10019 musings

the longest day

2012-02-06T15:35:00.000-05:00

I have traveled enough that I recognize before a trip even begins to expect the unexpected. Trains, planes, weather, traffic and glitches in the alignment of the stars can trigger minor bumps and annoyances or result in catastrophic scrambles to optimistically well-planned itineraries. I try to go with the flow with these experiences by maintaining a good attitude and not yelling at anyone. Especially not the people who are experiencing the disaster along with me.

On December 26, 2011, I believe I managed to maintain a good attitude and I did not yell at anyone despite the fact that I think the universe needed a good chastisement with a "was cancer not bad enough?" thrown in for effect.

Our flight from Buenos Aires to El Calafate was scheduled for 4:45 am. Of course that means one must count backwards and factor in arriving at the airport an hour in advance, taxi driving time, getting ready time and a little buffer. I packed and showered the night before and was the last one up at 3 am. Yup, last one up at 3 am. How often do you say something like that? We were in our taxi by 3:30, the time the hotel promised gave us more than enough time to get to the local airport and make it through the lines and get on our flight.

They were partially correct. The taxi ride was quiet with no traffic and just a few extra long red lights but it went as expected. The hotel had provided us with a yogurt and granola breakfast before departing but I couldn't stomach more than a couple of bites. It was just too early. We were all silent throughout the ride.

When we arrived at the two roped off lines to check in a woman directed us to the line to her left because the line to her right was for people who had already checked in online. We had tried that the day before but the system wouldn't check us in for some reason. There were only a couple of people ahead of us in line but no one was moving. A sign said we had to check luggage 40 minutes prior to our flight. After standing in line for what felt like forever (but had only been 15-20 minutes), it was getting dangerously close to 4 am. I tried to plead our case with the woman directing passengers to the painfully slow line or to the speedy-aren't-you-lucky-you-were-able-to-check-in-online line. She told me to wait. I then spotted some ticket kiosks on the far wall and tried to check us in there. No luck. After a total of one person had been helped ahead of us, the line director woman moved us to the counter right around the 40 minute cut-off time.

We were then told the flight was overbooked and our seats had been given away since we failed to check in online.

Let me take a small step backwards and tell you that my traveling companions and I had spent a ridiculous amount of time communicating with this airline over the last several months for a variety of absurd reasons, a few of which I will list: 1) booking flights that refused to be booked online, 2) trying to understand the shifting, contradictory descriptions of luggage fees online, and 3) attempting to reconcile the contradiction in flight times listed on the boys' itinerary as 5 pm and mine as 8 pm for the same flight number for our flight from Punta Arenas to Santiago (yes, we were on the same flight but the time had been altered by 3 hours with no notice to the boys who booked a few days before me). Not to mention the ridiculous number of emails I received that were constantly shifting the times of our flights (some by as many as 3 hours and others just by 5 minutes here and there). So, if there was some warning about checking in online or risk losing your seats, one of us would have seen it. The website does allow passengers to check in up to 48-hours in advance. But when we weren't able to check in, we really didn't worry about it too much.

Add this to the "Lesson Learned The Hard Way" category for overly paranoid, cautious traveling. And we did in fact check in for the rest of our flights at the earliest possible hour. One particular subsequent flight (from Easter Island to Santiago) the boys were unable to check in online once again. But this time the hotel reception explained this happens all the time and spent a considerable amount of time calling the airline to get them checked in. Z was able to spend the afternoon snorkeling in blissful ignorance not realizing John was convinced the two of them would be bumped again and stranded on Easter Island while I flew home.

But I'm getting ahead of myself.

Once we were told we had been bumped we were told to wait for the ticket agent's supervisor. We were clumped awkwardly near the ticket counter with all our bags near some other forlorn looking travelers with all of their oversized baggage as other lucky travelers were able to turn over the large bags and granted tickets, free to walk away unencumbered towards security.

Before long an efficient, navy-uniformed clad woman approached, spoke to the people next to us in fast Spanish and started leading them away. With my non-existent Spanish and hand gestures and general look of despair, we were told to follow as well. All of us traipsed along the aisle between the ticket counters and the roped-off lines wheeling our suitcases down the terminal to another airline's ticket counter. I believe I had already taken over as manager of the tickets and passports and after some wait I was handed some freshly printed standby tickets along with our passports and we were relieved of our luggage. Only one of our three names had been spelled correctly (hard to mess up a name like John too much) and those of us whose names were mangled were so bad as to be mistaken for different people. I asked the supervisor woman about this and she waved me off as being overly worried and indicated it wasn't a problem. Our bags were checked and we were then told to follow a second uniformed airline employee up to security. No one ever looked at our passports or tickets and while Z got hung up in security briefly when he was asked to unpack a stuffpack, there wasn't much of a line or wait. We were taken to a gate and sat down to wait. Anxiously.

At this point no one had really told us what was happening and we were just assuming we were on a standby flight to our destination of El Calafate. I handed the boys their tickets and passports and after a few tense minutes of sitting Z asked me why our tickets said "USH". Without looking at the ticket I told him that meant Ushuaia, the city in Tierra del Fuego where the plane would land before continuing on to El Calafate. I then looked at my ticket - it read USH and that was all, no indication that we were to continue to El Calafate. I looked at the gate and sure enough, the flight was going to Ushuaia. I approached our original airline representative who was kind of hanging around waiting to get all of us on the flight. She confirmed that yes, we were going to Ushuaia and it took some back and forth before she realized no, that was never our intended destination.

We were told to go down to the luggage area, request to have our bags taken off the flight and go back to LAN's service desk (our original airline) and request further help. We were devastated. We all briefly questioned whether it would be easier to just straighten it out in Ushuaia or here in Buenos Aires but ultimately realized our best option was to try again from BA. When we got to the luggage area we agreed to split up to be more efficient. John agreed to talk to the luggage people so I handed him our claim tickets and I went to the LAN service desk. Z remained with John so he could help with luggage and act as the go-between. I once again collected everyone's passports and itineraries and tried to sort through my limited Spanish phrases - how to explain this? Where to begin? So I started with "habla ingles?" Unfortunately I got a feeble answer in return and a blank look when I tried to explain my situation. The woman next to the one helping me spoke English and turned to help but both agreed I needed to once again wait for the supervisor.

They handed me three vouchers with Breakfast checked off and pointed me to a cafe and told me to wait there, they would come find me. I was a little skeptical of their promise to look for me but went to the cafe anyway. I sat down and tried to figure out how to order. No one was coming to me so I wondered if I needed to go to the counter. I stood at the counter trying to interpret what I could have with this voucher and was ultimately waved back to my seat. A woman then brought me a plate with two small, sticky croissants and a coffee. I was a little confused but assumed this was just what was covered and I apparently did not get a choice. I was starting to get hungry so I ate one of the croissants and watched for my friends and tried to read.

Z wandered up after I'd been waiting for a while and I asked him to sit with my things while I went back to the service counter. No luck. But as I walked back toward the cafe I spotted the uniformed supervisor. She had a genuinely sympathetic face and shook her head and apologized. Her English was, thankfully, excellent. She asked what happened and I explained how we were ticketed for the wrong destination. I get the exact sequence of events confused around this time (since this was still pre-5 am) but at some point Z went back to get John from the luggage area and when the two of them returned they only had two suitcases. Z's bag was on its way to Ushuaia, under my luggage claim ticket. Or at least, under the luggage claim ticket that most closely resembled my name. All of this was explained to the supervisor and she clucked her tongue and shook her head and asked us to follow her once again to the other airline where we once again went to the front of a line, handed over passports and luggage and were granted standby tickets (to El Calafate this time!) and luggage claim tickets. The supervisor wished up luck and passed us off to yet another LAN employee. This one was around our age, pretty and also very sympathetic to our situation. The boys liked her the best. But then, so did I. She once again took us up the stairs and through security where we were recognized and the only hiccup was they wanted to look at the trailmix I had in my bag. We then waited at a gate for a flight we did not get on.

To say we were disappointed and deflated is an understatement. We were exhausted, angry, sad, upset . . . a whole list of emotions. At one point, Z - not normally the empathetic, comforting type - came up to me and patted me awkwardly on the shoulder and said "there there, there there." It made me laugh and almost cry.

Z "Tebowing" for us to get on a flight

We had to start all over again - Ground Hog Day style. John took the bag claim numbers and went to the luggage area, Z and I went with the blonde woman to the ticket counter. She had spoken with her supervisor and tried to offer us guaranteed seats on the first flight the next morning as well as a hotel. We asked for a list of all the flight times and said we weren't ready to give up. Z asked if we could drive. I tried to explain how far it was and that there weren't exactly normal roads - so I did a google map route and it calculated that it would take us 1 day and 9 hours to drive there. Our original flight was supposed to land around 10 am in El Calafate and we were to be picked up by a guide and taken to the Perito Mereno Glacier for a trek across the glacier. John had sent an email or two to the tour company and I believe left a voice message as well. We were only scheduled for one day in El Calafate and at 8 am on the 27th we were supposed to be picked up and driven to our hotel in Torres del Paine in Chile. Waiting another day to fly to El Calafate would just continue to destroy our itinerary.

Between flights two and three Z decided to use his breakfast voucher while we waited. We were at a cafe near the gate that was almost empty. John asked for a coffee and I sat at the table with all our carry-on bags while Z attempted to order with the vouchers. But he wanted water. I don't know if I just really needed some comic relief right then or if I was so tired and annoyed that pretty much anything was funny but I watched him stand in the middle of this cafe repeating "agua" to a woman who responded "cafe? cafe con leche?" over and over. Z kept pointing to the voucher and saying agua and the woman kept shaking her head no and telling him he could only have coffee. Exasperated he turned to me with his arms in the air in defeat. I walked over and somehow told her he would pay for the water but we needed one coffee. Z looked at me and said, isn't that what I just said. I laughed about this interaction the rest of the trip. But we didn't make it on that flight so we still had to do this whole thing over again.

After we were ticketed for our fourth attempted flight of the day we went through security again and were told to meet the LAN agent at gate 5 at a certain time. This was our longest break so I chose a long row of seats that wasn't near any departing flight. It was facing a bright sunny window. I put my bag in the end seat, removed my eye mask, neck pillow and headphones, selected a playlist called "In A Funk" which I made years ago to soothe sour moods and stretched out to try and sleep. I took three or four seats and didn't say a word to the boys. I don't believe I actually slept but the act of closing myself off from all external stimulation helped settle the panic that was rising deep inside me. The panic that wanted to shout "EVERYTHING IS RUINED!!!!!" The panic that wanted to scream and yell and throw a fit. Instead I listened to selections from Beck's Sea Change album and Radiohead's "How To Disappear Completely" and "Exit Music (For A Film)" followed by Me'Shell Ndegeocello's "Bitter" with bits of Moby and Death Cab for Cutie thrown in. After a while I sat up but continued to listen to the music, then I went on a hunt for water and tried not to get angry when a woman refused to accept the equivelent of a $20 bill for a $3 bottle of water and instead went to the Duty Free store and bought a box of alfajores cookies to take home to break the bill and went to a different counter to get water - all the while listening to my music to soothe me.

As the time for our latest standby flight grew near we packed up our things and moved to the departure gate. I left the boys there and went back to gate 5 to meet our LAN guide, we were back to the first one Z had named "the little chubby one." She wasn't as nice as the pretty blonde and seemed annoyed she had to babysit us. I tried to be cheerful and nice in return, hoping this would help somehow. She hung out near the gate agent as the flight boarded and the boys and I kept our expectations in check but longed for this to be the one. John had informed our tour company in El Calafate of our latest flight attempt. It was nearly 11 am.

When the line had dwindled to just a handful of people I hovered near the counter hoping to overhear what our odds were of getting on. The LAN woman was hopeful. I am pretty sure she was begging to be rid of us at this point and get back to whatever her normal job duties were. I started to fill with hope and I secretly cursed each straggler I saw make their way to the ticket agent.

Then, finally, miraculously, we were told we could board. We were given seat numbers and we felt like we had won the lottery. I thanked and thanked the LAN woman but refrained from hugging her and the boys and I practically skipped down the jetway. Near the end there was a sign - I forget what it said - but I reached up and tapped it in farewell and for whatever reason the boys each did the same. We were just beyond elated that we were finally getting on a flight we didn't care about the other details. And the other details were bad. We were in the next to the last row near a bathroom that reaked of urine despite the shut door. I was at the window but any possible view was blocked by the engine. John was in the aisle and Z was across the aisle but joined us when no one sat between us. Each of us was crammed in there with our knees touching the seat in front of us but we were just so happy to be on the plane we didn't care. The flight was about 5 hours with a stopover in Ushuaia where we weren't allowed to get off the plane but did walk up the aisle and look out the window at the beautiful mountains. We wondered whether Z's bag might get loaded on our current flight and John continued to tease Z about how we would share our clothes with him (offering up sundresses from my wardrobe, of course). We did receive some food on this flight - although I am at a loss for how to describe it. We were handed a ziplock bag with a spongey square of cake-like bread that Z said resembled corn bread but I cannot attribute any known flavor to it. It was closer in color to ginger bread but there was almost no flavor, just dry-ish texture. We both ate it anyway. And that was lunch.

The view of Ushuaia out the plane window during our stopover

e finally landed in El Calafate around 4 pm and John and I were reuninted with our luggage. We looked around for a lost luggage window for Z to discuss his situation but there wasn't one. This was a very small airport and we had previously been given a number to call so we agreed to just go to the hotel and try from there. Our tour company had a guide waiting to collect us and we soon arrived at our hotel. The guide agreed to return in 15 minutes to take us to the glacier. We wouldn't get the much-anticipated (and, of course, already paid for) tour on the glacier, but at least we would still get to see it.

I asked the receptionist for help calling about Z's lost luggage. She dialed the number and handed me the phone. It was soon clear this was not the right number to call. I asked the woman for more assistance and she brushed me aside. So I went up to inspect our room and get what I thought I would need for our visit to the glacier - a fleece and my camera.

By this time I think we were all running out of niceness and were getting snippy with each other and just misreading each other. But you never realize that in the moment. While we waited for the guide to return I went on the airline's website to try and track down Z's suitcase. I was able to update our hotel information and track the bag - it was supposedly en route. Z was not feeling overly optimistic and did not share our enthusiasm about arriving in El Calafate knowing his suitcase was still out galavanting around the ends of the earth (Ushuaisa is literally the southern-most city in the world).

Our driver and guide - the landscape looked a lot like Utah - dry desert with mountains in the distance

The drive to the glacier was long and conversation felt a bit forced as we tried to overcome our fatigue and frustrations. It didn't help that our pert little guide kept telling us how unfortunate it was we weren't able to stay in El Calafate longer and that we really should have done a trek on the glacier. Apparently she did not understand our situation.

Perito Mereno Glacier

Perito Mereno Glacier Calving #1

Perito Mereno Glacier Calving #2

The glacier was beautiful and the boys occupied themselves by taking lots and lots of photos with their fancy new cameras and I congratulated myself with my ability to walk up and down all these endless flights of stairs at the viewpoint of the glacier without too much trouble. The place was empty since it was so late in the day. The sound of ice cracking as the glacier calved into the lake was immense. We tried to imagine what it would be like to have crampons strapped to our feet and be walking on that massive, living hunk of ice. We lingered and admired the ice under the late summer sun before reluctantly returning to the car for the long drive back to our hotel. We bickered a little and I realized for the first time how little I had eaten during this excessively long day. I made Z sit in the middle seat for the return drive claiming I couldn't face the discomfort again.

an attempt to capture the immensity of the glacier

me with the glacier

I have no idea what time it was by then but my guess is it was close to or after 8 or 830 pm. We were mostly quiet, including the guide, when the driver pulled off to the side of the road. Something was wrong. It wasn't a flat tire but something was wrong - loose lug nuts or axel or something that was never really explained. Another vehicle stopped to help. We sat where we were feeling defeated by the entire day. There wasn't a way to ask one more time "what else could go wrong?" because there always seemed to be one more thing. I have no idea how long we were pulled off on the side of that desolate road. John mostly pulled into himself while Z and I played Uno on my phone for a while and then he or I poked at the compartment in the ceiling above him and discovered a tv. Our guide offered to show us some videos of the area and we accepted. I don't think it occurred to any of us to get out and try to help. We felt so helpless and just resigned to whatever obstacles fate was delivering. I rummaged in my purse and longed for the giant bag of trail mix I had left in our hotel. I found some old Starbursts in a side pocket and shared them with Z and John declined. We watched a movie about the glacier trek we should have done that day and it made us more depressed. Z was especially disappointed when the movie showed the guide chipping ice off the glacier and clinking it into glasses he then filled with whiskey. Z asked if they would have done that on our tour and our guide said yes, it was a tradition. Z loves whiskey. He knew he would have had a double portion when I declined mine so I think this made him doubley sad.
At some point we were told we could resume driving again but that we had to go more slowly - for safety. We shrugged our shoulders and remained quiet in the back. We arrived back at our hotel at 10 pm. Our hotel was located a little ways outside of town but had a complimentary shuttle. Z asked the front desk when the next shuttle was (10:15) or, alternatively, if there was a way to just order pizza (he was told no). We were told there were two items delivered to our room. Z had a joyous reunion with his bag wherein he got down on the floor and hugged it and John read us the letter we received from the driver who would be picking us up at 7:45 the next morning. We were back out front waiting for the shuttle before 1015. We waited and waited. While we waited a truck drove up, a man got out and walked inside with pizza. The shuttle didn't arrive until 10:30. We were just not doing anything right since we couldn't even get proper information from the front desk. I tried not to blame Z. I knew he struggled to communicate here, no need to blame him.

The shuttle dropped us in a parking lot just behind the restaurant that had just delivered the pizza. Pizza sounded like the most amazing thing in the world to eat right then. I asked the shuttle driver when he would be back and a couple who overheard us showed us the schedule they were given by the front desk. One more thing to make me feel like the world was out to get us - no one had offered us a schedule. I memorized the times and thanked them and bee-lined for the restaurant. We were told there was a 15-minute wait which felt like an eternity. I asked in broken Spanish mixed with pantomime if there was a way to just get a pizza to go. They said yes. John waited outside. I ordered a pizza and Z got a glass of wine while we waited. All around us people were enjoying their vacations and I wanted to fall into bed.

We got our pizza and returned to the parking lot to wait for the shuttle. John confessed to a stomach ache and Z and I stood in the dark eating the pizza from the box. We were hoping we could laugh about this day someday - the day we got up at 3 am and didn't eat anything until 11 pm standing in a dark parking lot. Looking back, I'm amazed we didn't turn on each other that day. That was the real miracle.

still smiling!

Radiation Routine

2012-01-26T21:08:00.002-05:00

Now that I have been through ten radiation treatments I can say it is starting to feel routine. That first week back was jarring - the jolt of returning from vacation, the shock of going back into treatment and the usual adjusting necessary for finding balance in a new pattern.

After that first week of scattered afternoon appointments, I am now scheduled for radiation every week day at 4:15 pm (except Tuesdays when I see my doctor and go in earlier). I actually like being one of the last patients of the day because the waiting room is generally cleared out and I am sent back to change without much sitting around. When I had earlier afternoon appointments I waited anywhere from 15 minutes to 2 hours. I wasn't a big fan of that.

So here is my daily routine. I generally allow myself to sleep in without waking up to an alarm because my doctor and the nurses have emphasized how I need to get a lot of sleep and my good sleeping habits are once again slipping away from me. I blame Tamoxifin - the hormone therapy I will be on for the next five years - which gives me hot flashes, which always seem to flare up as I'm going to bed. I then go into the office for a few hours before I head to Chelsea for my daily zapping. It isn't so bad.

After a short (or sometimes lengthy) wait in the main waiting room, my name is called and I go back to a small locker room to change from the waist up into a hospital gown. The one downside to scheduling my appointment at the end of the day is the good gowns - the long sleeve seer sucker ones - are often gone and sometimes I end up with the kind that are meant to be open in the back. These are a little tricky to wear since they are very large and can't be tied off at the waist so my second choice - the kind I usually get - are the pink, short sleeve hospital gowns that wrap in front with a tie at the waist. I then wait in a second, smaller waiting room just outside the changing area and wait for my name to be called.

After a short wait (usually), one of the the radiation techs retrieves me and leads me to the treatment room. Before entering they ask me my birthday. I've learned this is kind of the secret password for everything at hospitals - nurses asked me my birthday before giving me chemotherapy drugs, the techs and nurses and orderlies who wheeled me around the hospital for surgery or sent me in for a scan always asked for my birthday before proceeding.

all prepped and waiting for me (those blue things in the background are other molds)

this is at the end of my treatment so you can see how the whole machine turns - you can also see the red laser on the table

I am then ushered into a room that looks like almost every other radiology and nuclear medicine room I've encountered in the last year - clean, cold, well lit with a giant machine as the primary focal point. In this case the machine is called a linear accelerator. The linear accelerator delivers a special kind of high-energy beam to damage cancer cells. (Other types of energy beams include light and x-rays.) These high-energy beams, which are invisible to the human eye, damage a cell’s DNA, the material that cells use to divide. While my last scan in December showed no evidence of cancer in my body, there is always the possibility that tiny little cancer cells went undetected and can start growing again to create another tumor - or worse, get loose somewhere else in my body. Research has shown that people who are treated with radiation after lumpectomy are more likely to live longer, and remain cancer-free longer, than those who don't get radiation. Not getting radiation can increase risk of recurrence by as much as 60%!

But back to the procedure - in front of the machine is a table that has been prepared with the blue mold they made of my upper body back in December during my simulation that is covered with a white sheet. I sit down on the table, take off whichever gown I'm wearing and lay down with my arms folded over my head with my head turned to face the right wall. The table is then elevated off the ground 3-4 feet. The wall I am staring at has a red laser beam shooting out of it, as does the wall to my left, the wall near my feet and the ceiling. All these lasers are helping to line the machine up with the tattoos on my body, or so I presume. The radiation therapists instruct me not to move and shift me this way and that by tugging on the sheet underneath me or adjusting my arms or the tilt of my head. At this point, I'm pretty good at folding into the right position without a lot of adjustment . . . most days. There is a monitor to the left of the table attached to the ceiling like a TV in a bad motel that has information about me - Left Breast and a bunch of numbers. I assume the formula for how I am supposed to be situated. The therapist has a large remote control with a cord they poke at and fuss over.

And just before leaving the room he or she covers my breasts with a smaller white cloth. After sitting there out in the open for the whole adjustment phase it seems a bit silly to cover me for modesty's sake just as I am being left alone so I assume there is probably some other reason for the covering, maybe it gives my skin a little bit of protection against the radiation, I don't know. Or maybe it because there is also a camera on the ceiling pointed down at me. I was told they can see and hear me when they aren't in the room. I've never tested this. I should note that unlike with a mammogram or most x-rays, no one wraps a lead apron around my waist to protect my other organs. I assume this is because the radiation is so specifically targeted to my breast and underarm area.

The therapist then leaves the room and a giant steel door that is nearly three feet thick closes, locking me in. There is a beige hospital curtain on my side of the door which is usually drawn shut so I can't see when the door is firmly shut but the curtain gives a little wave as the door seals and then blows back in a bit when it is being opened signaling my treatment is over.

Once I'm alone, I hear a prolonged beeping noise followed by a series of noises I can only describe as Star Wars and robotic - some whirring and shifting and the machine adjusts, stops and another long beep. I have to remain still. I stare at the laser on the wall to my right and the rather patronizing words scrawled onto the drab, beige curtain - "be gentle with yourself", "peace," "speak your truth" and "calming" do not have much soothing effect when written on a curtain. I wonder who those words are there for - the patient or the therapists, technicians, nurses and doctors, who probably stopped seeing the words after their first day, if they ever saw them to begin with since they were never told to lie still on that table and either stare at a wall with a red laser or a curtain with impotent words.

More loud beeps and the machine shifts its position around me and at some point - sometimes at the beginning or sometimes at the end, the machine adjusts itself so that I am staring at the round face of it. Behind a plexiglass window are giant metal teeth which open and shut in some programmed pattern. I usually wonder whether I should be looking at those metal teeth that make me think of Star Wars.

The whole process takes only 10-15 minutes unless I have to get "films", which is a once a week event. This involves the exact same procedure only the machine is in x-ray mode rather than radiation mode and the plexiglass window is covered by a thicker, removable plexiglass plate that is removed after the x-rays are completed so my treatment can commence. Film days are more in the 20-25 minute range.

Once a week, on Tuesdays, I see my nurse practitioner and radiation oncologist. The NP walks through a form of questions with me and weighs me - my least favorite activity these days. Despite my return to a regular exercise schedule and normal (not vacation mode) eating, I continue to gain weight. I think a combination of things are at play here starting with chemo messing with my metabolism, followed by Tamoxifin which messes with my hormones. Breast cancer message boards are full of complaints of weight gain from women who went through similar chemotherapy treatment as I did followed by Tamoxifin. Some advise that the good news is the weight comes off very easily once you stop taking Tamoxifin. That won't be for five years. The bad news? Gaining 15-25 pounds seems to be the norm. I'm frustrated that my doctors, nurses and the other specialists who ask me about side effects and issues brush this off as no big deal. I guess the hard thing is my vacation gave me a glimpse at reclaiming my body - the active, strong body that can do challenging things - and I hate sitting back and letting it slide into disrepair again because I fear I will never have my old self back.

In terms of other side effects, I really haven't had anything related to the radiation crop up as of yet. But from what I have read and from what my doctor has said, it takes at least two weeks for anything to manifest - that is right about now. The biggest concern is the skin in the area being radiated. Currently I put Aquaphor - a greasy Eucerin balm - on my breast, under arm and chest area two or three times a day. I am not allowed to shave that arm pit and I am not allowed to use deodorant other than the hippie crystal kind that honestly doesn't have a fighting chance against hot flashes. I have also been told to stop using any type of scented soap and avoid scrubbing the area and can only pat it dry with a towel. I'm doing all of this although without any evidence yet of side effects some of it feels a little premature. I don't have any pain or burning or even fatigue as of yet. Although I have noticed I am more tired in the evenings and have a hard time getting up in the morning but compared to chemo this is nothing. Two weeks down, about four more to go.

Buenos Aires

2012-01-23T13:27:00.001-05:00

A good vacation always alters me. I believe this is due to the exposure to new people, new food, new sights, new sounds, new smells and experiencing a culture and way of life that is completely removed and different from my own. This vacation was no exception. As a result, I find it interesting, once it is all over, to step back into my own shoes at the beginning of the trip and relive those early adjustment days when everything is still anticipated, nothing has played out yet and nothing has become familar or routine. Since the goal of this particular trip was always Patagonia, every stop before and after was scheduled to break up the excessively long distances one must travel to reach Patagonia - the not so well defined region at the very southern tip of South America. Easter Island was tacked on at some point as a sort-of "while we're down there" type destination. But ultimately, the goal was always Patagonia and even the way we talked about it was always in terms of Patagonia.

I realize Buenos Aires is an amazing destination in and of itself but since it was never a goal destination, anything we saw or did there was kind of a bonus. Especially since we were there on Christmas Eve and Christmas Day I saw very little point in getting my hopes pinned on doing or seeing anything specific since we had no way of knowing what would be open or closed.

After over a year of planning and several threats of cancellation due to that uninvited interloper in my life - Cancer - I arrived in Buenos Aires with my two friends on Christmas Eve, 22 hours after I left my apartment. Granted, a significant portion of that time was spent in the Delta lounge in the Atlanta airport in the hopes of avoiding the travel debacle I experienced a few years ago on my way to Peru. But despite only grabbing a few hours of sleep, I was excited to get started on my long-anticipated and fought-for vacation.

As I feared, our first challenge of the trip was how to fit the three of us and our three large bags into one small cab. Let me back up and defend my packing for a minute. I purchased a rolling duffel bag for this trip because I was worried about my ability to lug a regular old duffel around - the same duffel I have hauled to Peru, Panama and a number of river trips. I decided that with all of our flights and hotel changes it would help me to have something on wheels since I wasn't sure how my strength and energy would hold out. In packing this wheeled duffel I was constantly removing items and winnowing down my clothing selection to the absolute basics. And I was very successful at this. However, for some reason, my bag still seemed overly stuffed and enormous once I was actually traveling with it despite the fact that I literally used every last item I packed and - as evidenced by my photos - I wore the same clothing over and over and over again. The boys had the same problem with their luggage. But I think the ultimate problem was that we were traveling for nearly 18 full days in two countries through a variety of climates doing a wide variety of activities. Shoe selection alone was tricky. If I did it again, I'm not sure I would be able to pack much differently unless I opted to take only one pair of trail shoes rather than the two I packed. And honestly, I would probably swap one or two t-shirts for one or two extra tech shirts as I somehow elimanted all but two. But at least I only had one carry-on bag and one rolling duffel. The boys weren't quite as efficient . . . However, I will say, once we met others along the way we realized we were traveling far lighter than some in our situation.

So the cab driver had to be a little bit creative. After trying to maneuver a couple of bags this way and that he gave up on trying to fit even two in the back and instead shoved one of our seemingly ridiculous sized bags into his tiny little trunk and then added all of our hand baggage. He then stacked the two remaining bags on top of each other in the middle of the back seat so that they jutted up towards the front. John climbed into the front seat and Zaven and I squeezed into the back and peered over our luggage at one another, happy that we managed to fit in one cab.

We arrived at our hotel too early to check in but the desk clerk directed us to the small dining area for breakfast where we had the best yogurt-fruit-granola parfait ever. Seriously, it was amazing. We were all pretty tired but since we didn't have a room we decided to head out for some exploring. I spent a ridiculous amount of energy asking for directions to an ATM in my terrible Spanish but ultimately was successful enough to get us some money and a little tour of our area. An area that was quickly closing up since it was, after all, Christmas Eve. Although the sunshine and newness of the place made that fact seem a bit surreal.

By the time we returned to our hotel we were able to check into our room - a nice sized suite at the Miravida Soho, a small boutique style hotel in a restored old mansion. The boys shared the bedroom and I took the pull-out couch. We opened the windows and agreed to indulge in a little siesta to rest up before our scheduled dinner with my friend that evening. I think I slept for about an hour. I was tired but I really wanted to get out and explore the city, see new things, taste new tastes. But the boys were out.

I showered and puttered around in my half of the room until I ran out of things to do and when one of them stirred asked how long they planned on sleeping and what was our planning for the afternoon. I wanted to get over to Recoleta, the neighborhood where we were meeting my friend, a little early because according to the guidebook there was a lot more to see over there. They reluctantly got up and showered.

We decided to exchange Christmas gifts before heading out and pulled out some snacks for a little bed picnic and unwrapping. I gave the boys little crocheted penguin tree oranaments to hang off their backpacks (mine was already on my pack) and small leatherman tools. I also gave them chocolates which were opened and shared immediately. Zaven gave me the Bananagrams game and John gave me toe socks and a Hangman book. It all felt like such a cozy way to start a trip we were still anticipating despite the fact it had already started.

We left the hotel around 5 pm and took a taxi to the Recoleta market, which was surprisingly just closing. Our cab driver enjoyed playing tour guide on the drive over and encouraged me to practice my Spanish on him and praised my feeble attempts. John finally confessed to taking over six years of Spanish! This after I was the one stumbling around asking strangers for directions and struggling to follow their responses. I really need to take some Spanish courses.

Recoleta was beautiful and people were lounging around on the lawn in the sunshine and lingering at booths in the market that were mostly closing down for the day. I was hoping to visit the cemetery but it closed just as we arrived so we walked around the Plaza Francia some more and were rewarded with some street tango! That was one of the very few things on my list of must-sees in Buenos Aires!

The dancers were near this beautiful rubber tree with spider-leg like branches that spread out in all directions and - I later learned - is 50 meters wide! Some of the branches are supported by wooden stilts. The tree is known as Gran Gomero and was planted in 1878.

We meandered around somewhat aimlessly for a while and then decided to try and find a bar that was recommended in my guidebook and by a friend for its beautiful architecture and garden. We thought it sounded like the perfect pre-dinner resting spot. However, we had no idea whether it was open. Relying on the miracle of Google maps via iphone, I navigated us to the address only to discover, as I had feared, it was closed.

By this time it was close enough to 7 pm that I figured we could show up at my friend's apartment since we said we would meet between 7 and 730 pm. I navigated us back to his street only to discover that Parera between Quintana and Guido did not have a number 84. An 80, yes. A 90, yes. But no 84. In fact, nothing was between 80 and 90. Stumped, I searched back through my emails to see whether I had transposed the numbers when I copied them to my calendar. Nope, Parera 84. I shot off an email to my friend and prayed he would check his blackberry. We wandered up and down the street and even checked the next block over. We looked at buzzers on the various buildings to see if names were listed. No luck. I was also concerned because in addition to having the wrong house number, we were not given an apartment number. I considered asking a doorman to one of the buildings but they had suddenly all vanished. And I knew my Spanish was inadequate for that type of conversation.

At one point some concerned strangers approached us to offer assistence. Realizing there was nothing they could do they shrugged their shoulders apologetically and continued on their way to their own festivities. About 15 long minutes of trying to call my friend's U.S. cell phone number unsuccessfully and standing in the street fretting, I received an email saying he was at 68 and included the apartment number. 68 was just up the street and very different from 84. Baffling until he confessed that was the street number of his old apartment . . . .oops!

We had pre-dinner drinks and cheese in his beautiful apartment and John helped him get his printer working. Then he took us on a short walking tour of his neighborhood on our way to dinner. We had reservations at his favorite Italian restaurant - Sottovoce. We learned that the few restaurants that remained open on Christmas Eve in Buenos Aires had very high priced set menus. Ron was disappointed in the food, claiming it didn't live up to its usual caliber, but I thought it was good and we all got along well so I considered it a successful dinner. Plus, there was fantastic people watching. For example, the table next to us were German or Swiss and had decorated their table with a small Christmas tree (we were initially jealous they had a tree on their table until we realized they were the only ones and must have supplied it themselves) and at a certain point in their meal they started pulling out gifts for one another. We speculated about whether the older couple was the younger man or woman's parents and whether they younger couple was married, engaged or just dating. The number of gifts and the rounds of hugs and kisses was somewhat riveting. There was also a singer in the restaurant who was quite good but had the most bizarre song choices for Christmas Eve. It was like fancy karaoke - the Celine Dion song from the Titanic followed by some classic Guns & Roses, for example.

We realized as we walked back to Ron's apartment that our pre-arranged cab ride back to our hotel may be a problem since he too was given the wrong address. As we turned down his street we saw a black car with its hazards flashing and wondered if that was it, but there was no driver. We continued walking until we saw a young man who was indeed our driver and had been dutifully waiting there an extra 20 minutes past our prearranged time at an address that didn't exist. Nice guy.

We agreed to meet Ron in the morning (he talked us out of our idea to go to Colonia, Uruguay by ferry for the day) and returned to our hotel just past midnight when the locals took to the streets to light fireworks like we do on the 4th of July. Only they had the kind that are illegal most everywhere but Wyoming. The ones that launch into the sky and burst open. I leaned out the large window of our hotel room and watched the fireworks before reluctantly going to bed for the first time in two days.

We had a leisurely Christmas morning and at breakfast we met a nice gay couple from San Francisco with whom we swapped travel stories and itineraries. I liked them enough that we ultimately exchanged information when we saw them again in the evening and now we are Facebook friends. We initially thought maybe we would walk to Ron's since it was such a beautiful day but after we had wandered for a while I realized how far a walk it was and we hailed a cab. After introducing us to Alfajores - an Argentinian sandwich cookie filled with dulce de leche and covered in chocolate or meringue. Delicious.

He took us on a lengthy walking tour of the city pointing out embassies, government buildings and churches along with shopping areas and monuments. He gave us some political and historical context for some of the things we saw as well. Plus, we had a chance to catch up with one another since I hadn't seen him in over a year.

We had lunch at the Faena Hotel+Universe in the Puerto Madero area (since he knew the restuarant would be open). The food was good but the most memorable part of lunch was how ridiculously long it took for Zaven to get his pasta. I think I was finished with whatever I had ordered before he even got anything. We had shared some empanadas as appetizers and he was brought a small dish of cheese for his pasta but otherwise he just watched us eat and waited.

Ron and me after Christmas lunch

After our lengthy lunch we took a cab back to Recoleta and happily the cemetery was still open. The Recoleta Cemetery is one of the top recommendations for visitors for BA and once inside I understood why. It is beautiful. And, of course, along with all of the other tourists, we had to hunt down Eva Perone's tomb and snap the obligatory photos of the famous Evita's final resting place.

After the cemetery we thanked Ron for his excellent tourguiding and said goodbye as he went home and we set off in the other direction. We wandered through the market again for a bit but it felt too early in our journey to shop for souveniers yet so we kept walking. And happily stumbled upon the giant Steel Flower - Floralis Generica. It was beautiful and kind of fascinating since the big steel petals open and close as the sun rises and sets.

After that we returned to the hotel for an early night in an attempt to rest up for our far too early 3 am wake-up call. We had a 4:45 am flight the next morning that we felt was the beginning of our true vacation.

back to reality

2012-01-12T14:39:00.000-05:00

For the last month I've been able to live in a tiny bit of denial and pretend I'm a regular - albeit, out of shape - person to the extent I allow myself that fantasy. I got up early, I stayed out late, I flew on planes, crossed international borders and climbed mountains. I was also bumped from a flight, evacuated from the most heavenly place I have ever been lucky enough to visit and a passenger in a van that was run off the road into a ditch. I constantly bumped up against my own limitations and challenged myself to go just a bit farther and surprised myself in the process. But I also had my frustrating moments where I mourned for the trip I had originally dreamed about and for the return to full health I was so desperately grabbing at which often felt just beyond my reach. Adventure travel at its best because where is the true adventure in a vacation that goes exactly as planned?

For anyone willing to listen, I will tell you story after story about the ups and downs, the things I saw, the food I tasted (love my new taste buds) and the fascinating people I met along the way. Not to mention forcing photos of all of this on anyone I encounter. But for now, I need to talk about the last step in my treatment. It has been emotionally jarring to be back in the world of hospitals and tests and treatments. I went to what I believed would be my first radiation treatment yesterday by myself. I thought I was ready for it. I consider myself physically and mentally tough and consequently, I sometimes underestimate a challenge. I went into the office in the morning and then took the subway down to the clinic in Chelsea where I will receive my radiation therapy. I had previously never been to this particular clinic as I had met with my radiation oncologist and had my simulation at their other location at Union Square. Everything was new and I went alone. A mistake, I admit. I didn't have my insurance card with me and felt out of sorts at the registration desk and felt very lonely in the waiting room filling out the now-familiar forms about my medical history. It didn't feel right to be back at a starting point again and I felt the same bubbles of anxiety about the unknown I felt way back in April when I received my first mammogram. I don't know what I was expecting but it wasn't this.

The wait was long but I am used to this and tried to soothe myself with a book I struggled to concentrate on. Everyone else in the room looked very old and frail. Sick. They all had their hair. They seemed to know the routine. Everyone knew their names. When the receptionist left for lunch she asked me if I was waiting for someone. This was the same woman who had me fill out the forms a half hour or so earlier, she claimed she didn't recognize me with my beanie on. I was chilly and put it on for warmth. I waited some more and finally someone called my name and I was taken to a changing room and handed the nicest hospital gown I've seen yet. I swear it was made of seersucker and it had long sleeves! These rooms are always freezing so the long sleeves felt like a nice bonus. I locked my things in a locker but kept my Kindle as I rightly anticipated another long wait in the next waiting room. I was right but I wasn't given much of a chance to read.

A guy around my age soon came in dressed in street clothes carrying a purse. He greeted me and I said hello politely and tried to return to my book. He sat near me and was intent on striking up a conversation - asking me how I was feeling, how I was doing and telling me he was waiting for his mother who joined us a few minutes later. Oddly, she asked if I was from Brazil and commented on my accent. Maybe I picked up some South American inflections after all my time in Argentina and Chile I thought as I tried to replay what I had just said in my head. No, this woman was just confused.

After a few minutes the son asked me for my number. I was still trying to read my book, calm my nerves and not think about the unknown beyond the door on the opposite wall. His mother was sitting next to me and had just been telling me about her pancreatic cancer and had opened her gown to show me that her skin was not burned (one of my great fears of radiation). "Are you asking me out?" I blurted out in shock. He said "yeah, why not?" It was awkward. I did not want to go out with this guy. I was barely tolerating having a conversation with him in the waiting room and now he wants to call me? He insisted so I gave him an email address instead, an account I rarely use. I didn't know if I should feel flattered or insulted. It was just strange and got even more strange later when I saw him again when I returned to that little waiting room and he introduced me to his girlfriend. I was raw enough by the newness of the whole process I did not need strange men asking me for my number and then subsequently introducing his girlfriend. I have to go there every day, now I have to worry about avoiding a creepy guy.

When my name was called and I was able to escape the bizarre situation in the waiting room I was given an introduction to the process and asked to lie down on the table that held the mold they had made of me last month. I had to remove my arms from the sleeves and was told they would keep me as covered as possible. I told them it didn't matter at this point since they had to move me this way and that to get my tattoos and the lasers and the mold all ligned up properly. My head was turned away from the radiation point and I stared at red lasers on the far wall and concentrated on not moving. The machine clicked and whirred and at a couple of different points the technician came in to make adjustments to the machine. I hated that I had to keep my head still and couldn't see what he was doing. It took 15-20 minutes and then I was told that was all for the day - just x-rays, no radiation today. I was a little disappointed to be honest. I asked if this meant the session did not count as one of my 30 treatments and he said not to plan any vacations or trips because I can't be too tied to that schedule. I'm not planning anymore trips but I admit I was disappointed to hear there is a possibility (even if slight) that this could stretch longer than the forecasted six weeks. Because that is what I was told: five days a week for six weeks. Yes, that is every working day.

I changed back into my clothes and waited for the nurse to retrieve me. He then rattled off all kinds of practiced information that washed over and around me but didn't really seep in. I felt overwhelmed and slightly numb. Ready to cry if provoked because I did not want to be back in this world of limitations. I was given several pamphlets and sheets of papers and a few business cards and a number of names were thrown at me. I stashed it all in a folder in my purse and was sent on my way with yet another piece of paper to take to the lab for baseline blood work. It had been over a month since my last blood work was run.
And then it was over. I had a card instructing me to return today at 4:30 pm with instructions not to arrive early because it will just make for a longer wait. I'm going alone again but this time I'm not worried about that part. I've seen it, I know what to expect. This isn't something I feel I can ask for volunteers because it is every day, a heavier time committment than chemotherapy.

The list of anticipated side effects is not as lengthy as it was with chemo and fatigue and changes to the skin of the treated area are the most likely. I was advised to start wearing sports bras and that running, weight lifting and stretching exercises may be too strenuous. I don't want to slide back into a sedentary lifestyle but I will listen to my body and respect my own limitations.

What I need right now is emotional support. I am feeling a bit of whiplash being thrown back into treatment and also feeling very lonely. I came home to a small disaster in my apartment. At some point some other tenant backed up their drain and it exploded in my kitchen. Exploded. My rugs were stained and one is ruined. The cabinets had black bits all over them and everything in my junk drawer was destroyed - all the napkins and menus and plastic ware and plastic wrap and tin foil. My rice cooker was full of fetid looking water that nearly caused me to lose my lunch. I threw it and several other pans I could never picture myself cooking with again in the trash. The building cleaned it up but claim there isn't anything they can do to prevent this again. Terrible. They cleaned my rugs but only one came clean. They are sending a cleaning service in to give everything a more detailed scrub. But honestly, being back and starting treatment put me on edge and I do not feel I have the proper coping skills to deal with the mess. Hopefully it will all be taken care of by tomorrow as promised.

What I'm saying is I need one more bit of rallying. I need to meet friends for dinner, have plans for the weekend, get emails and phone calls and texts that let me know I am not entering into this last phase on my own. Because right now, it is feeling kind of lonely and I am wishing there was a way I could run home to my family for a couple of days.

this moment

2011-12-15T16:37:00.001-05:00

On Monday I sent the following email to family and friends:

This morning I met with my oncologist and got the absolute best early Christmas gift one could ask for . . . a clear scan!! Which means, there are no signs of cancer left in my body!!!!!! Even that pesky spot on my sternum which has been in the back of everyone's mind (at least mine, my family and my doctors) has vanished. Completely.
This news does not mean I get to skip anything else. I will still be on hormone therapy for five years (not a fan of hot flashes) and I will still have to go through radiation starting in January but all of that is just to keep it from coming back. I can now say I HAD cancer - past tense! Which means, with all of your love and prayers and support and thoughts and whatever - I have kicked cancer's ass and can go celebrate in Patagonia! I leave next week :)

And now I'm off for my tattoo . . . don't worry, it is part of my radiation simulation.

Have an amazing Monday!!

***************************

Today, I sent the following update:

First of all, let me tell you straight away that no, I have not yet recovered from Monday's amazing news. I feel a significant burden has been lifted. A burden I would have denied was there a week ago and yet its absence has left me floating.

Yes, I was anxious waiting for the results of my last PET scan but part of me was resigned to there being one more step left. I assumed that spot on my sternum that first showed up on a PET scan in May would pop up again and there would be decisions to be made about how to treat it. I just didn't expect to be set free so soon. As usual, I still asked my oncologist a number of questions and she had me make an appointment in two months and reassured me that I can always call with questions before that time if I need to.
Of course the first call I made as I left the hospital was to my mother as I tried to figure out where to go. My next appointment was still a couple of hours away and I hadn't planned on going to the office but it didn't seem right to go home so I went to my office where I could see real, live people and relay the news. I also sent out the email announcement and posted it on Facebook. I wanted everyone to know that I no longer have cancer. I collected some hugs in the office and then told a crowded elevator that I was cancer free after someone innocently asked how I was feeling. I think people cheered. I was hugged. Most of the people in the elevator work at my firm - a couple do not. I was beaming. In the lobby I didn't just nod and say hello to co-workers walking into the building, I shared my news and then floated out the door. In the subway on my way to my next appointment I couldn't stop smiling.
I think I was worried at some point about the radiation simulation because I remember Googling it and reading about possibly getting fitted for a mask to keep my head in place if radiation to the brain is necessary. I was also told I would be tattooed and I wasn't really clear on the details of that process despite the fact that this is the part I have been telling people about. But when I walked into the reception room I felt absolutely carefree. I was introduced to a music therapist who explained a study they were conducting that sounded similar to the one in which I participated during chemo. But this time, unfortunately, I was told I was chosen for the control group and would not get any music during my simulation. But I still had to complete some surveys and talk about my anxiety level. I told the guy right off that I wasn't even thinking about the simulation because I got such good news that morning and he congratulated me and then had me answer some "I feel vulnerable," "I feel strong," "I feel anxious," "I feel silly" questions on some scale and then I had to color any pain or tension or anxiety I was feeling on the outline of a person. I did this same coloring activity during chemo and never understood it. What is the significance of me randomly choosing red, blue, orange or green to color in the tension I always carry in my shoulders? The therapist gave me a short little lecture on how some people cope with new things by acting strong and confident, I agreed with him but said this time my strength and confidence is real.
I was then passed off to a radiation tech who showed me a little movie about the simulation in the freezing cold room with the giant donut shaped MRI machine that looks just like the fancy ones in that GE commercial where the cancer patients meet the employees who made the "machines that saved their lives" or something like that. And sure enough, this machine was made by GE. After the movie I was directed to a changing room and told to remove all my clothing from the waist up and to put the gown on with the opening at the back. I was also advised to empty my bladder. When I returned to the dressing room I pulled a blue hospital gown off the stuck on top of the locker (where I was instructed NOT to leave my belongings) and struggled to decide what to do. When I was told to put it on with the opening in the back I had envisioned a certain type of hospital gown that is basically reversible in terms of having the closure in the front or back. But this one . . . it was the wrap style type that seemed incomprehensibly ridiculous if it was put on backwards. I had also seen a couple of women in the hall with this same type of gown on and they were not wearing theirs in reverse. So I put it on the normal way.
I left a beanie on my head for some warmth and returned to the chilly room. The tech took my picture and I asked if I needed to remove my glasses and she said I could decide. I took them off and waited. My doctor came in beaming and gave me a big hug after she said how happy she was to see the results of my scan. This is only my third meeting with this doctor and that enthusiastic reaction was more than enough resassurance that I had indeed selected the right doctor to oversee the last of my treatment. She told me she would be reviewing all the MRI pictures in the next room and wished me luck before she left me with two techs I will endearingly refer to as Tweedle Dee and Tweedle Dum. I don't mean to disparage them in any way, but the situation was comical.
I sat on a chair and snapped a couple of photos of the room while they retreated to a corner where they commenced a fairly complicated art project. As it turns out, the tattoo is the least artistic portion of the simulation. Since it is vitally important that the radiation is repeated in exactly the same spot, with the body in precisely the same position each time, they were making a mold of my body. Not my whole body, just the upper half so each time I go to get treatment I will have to contort myself into the same position in this specially crafted mold. Tweedle Dee and Tweedle Dum had the type of familiar repartee that only comes after working in close proximity for a long time . . . or from being family. They half-bickered, half-joked and mostly teased each other as they layed a large piece of bright blue plastic on the floor, halved it and taped it up envelope style with masking tape leaving one open end. While one person held the plastic that was thicker than a garbage bag but still flexible up, the other shook up the contents of a plastic jug which I presumed contained some sort of plaster mold material. She then dumped it into the taped up plastic thing.
I was then instructed to lay on the table and was promptly harrassed about not trusting them by putting the gown on the correct way. I pled confusion and allowed them to put a bolster under my knees as they raised my arms over my head. When they went back to their craft project in the corner I switched the gown the proper way since they were just going to be pulling it almost off me anyway and all sense of modesty about these things left me long ago. You really can't have breast cancer and be shy about anyone actually seeing your breasts.
I returned to my place lying on my back on the table that slides into the donut hole of the MRI machine and waited. While I waited I stared up at the lighted "window" on the ceiling that wasn't actually a window since we were in the basement of a building at Union Square. It had six panes like a window and gave the illusion of looking up at a brilliant blue sky with a couple of puffy white clouds with tree branches arching slightly against the "glass." Two of the trees had bright pink cherry blossoms and the other unidentifiable to me yellow blossoms. It was pretty and comforting. More comforting than the red laser beams I could see on the wall to my right. I was covered with a white sheet which I noted was not heated despite an earlier promise of blankets being warmed for me and Tweedle Dee and Tweedle Dum had me take my arms out of the hospital gown and guided me to slowly lean back into the blue plastic project they situated under my head and shoulders. It was warm to the point of almost being hot and felt really good after the chillyness of the room.
And then it was like I wasn't even in the room as they went to work completing their art project and critiqueing each other's taping styles. My arms were placed folded over my head and I had to turn my head clear to the right with my chin a certain way. It wasn't necessarily uncomfortable or awkward but I hated that I couldn't see anything they were doing. I had one on each side of me taping the plastic to me so the mold could conform to my body. I tried to make a comment once or twice and they either didn't hear me (hard to imagine when they were hovering over top of me) or just chose to ignore me. I was warned when they taped up my surgical scars with something I never got to see that had a wire in it so the scars would be visible on the MRI image. I was getting molded and positioned to their satisfaction and then I was left alone taped into place in the warmth of the mold. Once everyone had exited the room the machine whirled to life. I read the warning on the inside to not stare directly into the lasers and closed my eyes and wondered why the other MRI-like scanning machines didn't have a similar warning because I remember being a little bit mesmerized by the spinning thing inside the machine during past scans.
I believe it took about twenty to thirty minutes for them to get all the pictures they needed but it is hard to gauge time when you have to sit completely still as part of a strange sciency-art project. My left arm was definitely asleep and had reached the tingley stage where I really wanted to just shake it out but I wasn't sure I could move it if I had tried with all the masking tape strapping me in. But even after the whirling airplane noise of the MRI machine was shut down and the techs were allowed to enter the room again, I still had to keep still with my head turned away from all the action. The penultimate step in the art project was the drawing of magic marker X's in three spots around my left breast. I was marked for my upcoming tattoo.
Finally, all the tape was pulled off of me and the mold was pulled out from under me and I tried to shake my tingling arm back into feeling. But before I could leave I had to get my tattoos. I was told it would pinch. It felt like three small shots. Two were barely noticable and one stung a little bit and bled a little. If you didn't know where to look, you would miss them altogether. I actually have freckles that are bigger. And yet, I can now say I have a mysterious tatoo!
After I got dressed again I had to answer some more anxiety-seeking questions with an intern of the music therapist before I was free to go.
I tried to do a little Christmas shopping but I was distracted by my good news. I wanted to stop strangers on the street and inform them how significant December 12, 2011 is to me. I wanted to explain that this is the date that will stand in sharp contrast to April 28, 2011 when I was told "it's cancer" because now it is over. Everything I have to do from this day forward is to prevent the return rather than attacking what is already there.

I went to the outdoor Christmas market at Columbus Circle that pops up there every year in search of a favorite item I will not repeat here because the recipient should be surprised. As I wandered I picked out gifts for my niece and nephew and stopped at a couple of jewelry stands with the idea of giving in my head. But the necklaces I was inspecting cried out with a different purpose. They were lockets with images and messages from old postcards and one read "Be happy for this moment. This moment is your life." The quote snatched something deep inside me and I knew I needed to commerate this day in a tangible way so I purchased it and informed the vendor that I was doing so to commerate my first day of being cancer free. Strangers congratulated me and I fought back more tears of happiness as I put it around my neck. My plan is to put the date and "Cancer Free" on the inside as soon as I find someone with better handwriting than mine to complete the task.

I have since learned the quote is an excerpt of a poem by Omar Khayyam, a Persian poet and mathematician. It is a simple, almost trite statement that can feel almost hollow with too much repetition similar to "seize the day" but without even looking I found a talisman to symbolize the end of a nearly nine month journey through illness which has changed me in ways I cannot yet comprehend. But one thing I can comprehend right now is that this is a moment I am truly happy with because it marks the beginning of a new life of health.

waiting

2011-12-09T19:47:00.001-05:00

At some point I will stop marking time in terms of weeks post-chemo and days until Patagonia but today I am 9 weeks and two days past my last chemotherapy treatment and 14 days away from my long-anticipated trip to Patagonia which is a comforting shift in balance as I slide toward an adventure and away from illness. October and November were rough months for me. It was almost as if I went through all of chemotherapy without understanding what everyone was so worried about. . . . and it all caught up with me. It didn't seem quite right to have the shock and fear and sadness of having cancer settle onto my shoulders just as I was putting the worst of my journey behind me. But there is something unsettling about leaving behind the defensive position of attacking the cancer as my body exhibits delayed reactions and attempts to return to some form of normalcy that don't feel quite normal. This in between period is what messes with my head and leaves me with raw emotions.

I should back up slightly and clarify that I am steadily improving and while I was home over Thanksgiving I felt I made some significant leaps forward in terms of energy levels. Before I went home I had difficulty leaving the house for more than three or four hours at a time. I would return home feeling leaden and something far beyond tired. My whole body longed to retreat into hibernation but sleep was not readily restorative so I allowed myself a goal of just one thing a day. And sometimes that one thing was a walk to the store and back. But while I was home some of my missing energy snuck up on me and I managed to do things I have missed. I say it snuck up on me because it arrived so suddenly. My first day at home I decided to go snowboarding but allowed myself time to sleep late and take my time getting to the mountain. Delta forgot to send my snowboard on the same flight as me so I had to rent gear which added more time. I won't pretend I am the type to get to the lift as it opens at 9 am with any consistency but I usually like to be making my first turn by 930 or 10 but that day I don't think I was on a lift before 11 am. I purchased a 20-ride pass which could be used at any time throughout the season and half-way down my first run as I sat in the beautiful, fresh powder I fought back tears. I had no energy. Everything hurt. My body wasn't listening to what I was telling it to do and I worried I wasn't ready for this. With great effort I managed to get myself vertical again and down the rest of the mountain for a rest in the lodge. I reminded myself there was no hurry, I could go at any pace because no one was watching or waiting. I managed four runs that day.

But I went back the next day with my own equipment and was greeted with the type of blue sky you pray for. On my own snowboard I doubled the prior day's runs and strayed onto tougher terrain - including a black diamond off the newly opened Powderhorn lift, just to show myself I could do it. And I did. Two days of exertion in a row meant a lazy day before Thanksgiving spent primarily on the couch as my mom and sister shopped, prepped the turkey and made pies. Oh, how I wanted to rouse myself enough to make pie but I never managed it. I reminded myself it is all about focusing on where I want to exert my energy and the next morning I had a 5k to run! And I did it. I had 7 wonderful people who tore themselves away from their own thanksgiving preparations to run with me. My sister, her husband and I had run our first turkey trot together two years prior but this time instead of trailing behind them on my own I was flanked by two long-time friends. Their company fueled my resolve to run as much as possible and just as I was talking myself into one final push for the finish line we saw the rest of our group lined up a block or two from the finish cheering us on and we finished a handful of seconds shy of the 40 minute mark. Such a good milestone to hit surrounded by people I love.

My last full day in Salt Lake I returned to Solitude Mountain Resort which, in my opinion, is one of the most beautiful places on Earth and never fails to put a smile on my face. The mountains do something else for me, they refuel my spirit. My mind clears, other fears, concerns, stresses and distractions fall away and I fill up with love and awe and gratitude for everything I have. The mountains have always restored me this way and sometimes I wonder how I have managed to live 2,000 miles away from them for so long. On that day, for the briefest time, I stopped focusing on my own limitations. I stopped worrying about what was still to come and I stopped counting the days and weeks ahead or behind. I sat in the moment and breathed the crisp winter air, felt the warmth of the late November sun, pointed my board downhill and glided over the snow and felt the rush of the wind in my face. I no longer felt like I was a conspicuously bald chemo girl. I was myself. Energy and stamina had crept their way back into my body and were promising to make a longer stay.

I still get tired. I still have to pace myself. I still get unbelievably frustrated with my own limitations. But, I know it is getting better. Of course, my impatient nature doesn't always allow myself to recognize this improvement. And some things are still very difficult to accept. Chemo ravaged my body in many ways with which I am still forced to cope. My fingers and toes still have remnants of neuropathy leaving my sense of touch oddly different. Sometimes I feel a slight electric charge shoot down the soles of my feet. I have to keep my nails extremely short so they don't tear away and they are ringed with white lines I think correspond with each round of toxic chemotherapy. I have gained enough weight that even the largest clothes I own are significantly strained or don't fit. My hair is slowly growing and filling in bit by bit but my eyebrows and eyelashes continue to fall out. Although today, for the first time, I noticed tiny little sproutlings of eyelashes growing on my bottom lids. Those were the first lashes to go so I'm hoping the top lashes will start growing soon as well. Without makeup I feel like a different person is returning my gaze in a mirror. There is a certain blankness to my face without the definition of my normally overgrown brows and lashes. While I appreciate the reassurances I receive from friends and family, I can't say I will ever feel comfortable with this look and the extra weight exasperates it all for me. I'm tired of baldness as well but honestly, I could endure that a lot longer if I could just have my brows and lashes back and return to my normal size.

While I was home for Thanksgiving I asked a photographer friend to take photos of me. I thought it would be nice to have photos of me at the end of treatment without the makeup. But when I got the photos back I was not prepared to look at the woman staring back. I felt an alarming disconnect I was not prepared for. Somehow seeing myself caught looking so vulnerable made it all so very real. I looked like all those other cancer patients I have been seeing all these long months from whom I thought I was so distinct and different. I have posted a few of the photos because I am ultimately glad I had them taken despite the fact my vanity screams they aren't actually of me. I still have a lot of healing to do that goes beyond regrowing hair.

In terms of where I am in the overall process, I had a PET scan this last Monday and am anxiously awaiting the results. I see my oncologist Monday morning and my radiation oncologist Monday afternoon and I'm hoping between the two appointments I will have some answers for myself. Both doctors are still being very cautious about my sternum and the spot that was biopsied back in May, which I appreciate. I think we are all anxious to see what has become of that pesky spot. Whatever has happened, I look forward to having some sort of answer on Monday. After that I can focus on final trip preparations and leave the worrying about radiation for January when I return.

pathology results!

2011-11-15T14:07:00.001-05:00

Late yesterday afternoon I received a call from a nurse practitioner from my surgeon's office saying she had good news - my pathology came back and my "invasive cancer had regressed" to the point of a few "in situ cancer cells" with the sentinel node that was removed also having a few cancer cells. She was telling me to be happy about these results but, to be honest, I was having a difficult time understanding because all I kept hearing was "cancer cells." So I cried as soon as I hung up the phone.
Then I called my mom. Then I started googling to figure out how this was good news. Then I realized it would be best to talk to my surgeon about it.
This morning I saw my surgeon for the first time since the surgery and after having him explain the pathology report, asking some questions, reviewing the pathology report for myself and giving it all a little time to sink in, I think I finally understand it and can say - I HAVE GOOD NEWS!
What I failed to comprehend when both the nurse and the surgeon were explaining the report to me was they found cancer cells in the tissue they removed. For some reason I kept hearing that I still have cancer cells, not that the tissue they removed had cancer cells. Now that I am over that mental hurdle, I am feeling much more relieved about the news.

Basically, the tissue they removed from the breast (measuring about 4.4 cm) had no evidence of invasive carcinoma and the margins (the 2mm area around the tumor site) are negative. The lymph node they removed contained 0.1 mm of metastatic deposit which means no more than 200 cells. This means Stage 1 cancer. I started off with invasive carcinoma and positive lymph nodes which resulted in a diagnosis of Stage 2b breast cancer. I am told this is a huge improvement and shows chemo did its job.
My surgeon went on to explain that this is better results than he sees in many patients and there is a possibility that I am cancer free right now (YAY!). He also explained that since I am still so close to the end of chemotherapy that there is a likelihood that the chemo is still fighting whatever cancer cells might be left and had we waited a bit longer to do the surgery, I may have had completely clean results. He explained that in the past when the sentinel node still contained cancer cells they would go back and take out more lymph nodes but there have been significant studies which have shown there is no difference in recurrence between the women who had more lymph nodes removed and those who didn't. So I will go ahead and keep the rest of my lymph nodes.

I meet again with my radiation oncologist tomorrow to start planning the last stage of my treatment - radiation - which will be five days a week for six weeks starting in January when I return from Patagonia. In the mean time, I am starting to take Tamoxifin, the pill I will be taking for the next five years to block the estrogen receptors in my breasts. I also have a PET scan scheduled for December 19th and will have at least one or two more appointments with my radiation oncologist before I leave to get everything primed and ready to go to start radiation as soon as I am back. I feel reassured and comforted that I will be seeing my oncologist every three months and my surgeon every six months. I don't have a stamp of remission to brag about yet but I'm definitely starting to feel like chemo and surgery worked and I'm hoping for similar results with radiation.

lumpectomy, NYC Marathon cheering and that lingering jerk - chemo

2011-11-10T22:18:00.001-05:00

I have a few thoughts bouncing around my head lately that I feel like capturing for myself or possibly for anyone out there facing a lumpectomy. I will also probably ramble into the realm of post-chemo life because I'm in need of some writing therapy on that front. I may even share my thoughts/reaction to the movie 50/50. Yes, I saw it. By myself. And I recommend it.

First, I was skeptical when my surgeon told me the "procedure" would be pretty simple, especially since I knew he would be removing my sentinel node. If you do any amount of googling, you will discover that removing any lymph nodes will almost certainly result in lymphedema - fluid retention and tissue swelling in the arm in which the lymph nodes are removed. According to the fear mongering internet, this can result in a loss of range of motion in the arm and even permanent disfigurement. My surgeon reassured me (a number of times) that he was not concerned as this is now very rare when only the sentinel node is removed and that they monitor it very closely.

At any rate, tomorrow will mark one week post-lumpectomy and other than some tenderness at the point of the incisions, I feel pretty much recovered from surgery. I have two incisions between 2-3 inches in length. This may not seem like a large incision for those of you with more ample breasts but for me, the incision on my breast covers the whole left side and the one closer to my underarm (for the removal of the lymph node) covers most of that space as well and is conveniently located in precisely the location where all bras end. Meaning, whether I wear a regular bra (just managed to do this successfully for the first time today) or a sports bra, the seam rubs right at the incision point. Not exactly comfortable. But not terribly painful at this point, just irritating. Also, the rubbing resulted in the steri-strip on that incision falling off much earlier than my other steri-strip which is still firmly in place. After consulting my post-op instructions which indicated I should wait for them to fall off or let the surgeon remove them, I peeled the last remnant of it off this morning to get my first real glimpse at my scar.

It isn't pretty. But it isn't hideous either, despite the fact that I have been referring to my breast as "franken-boob." The worst of the bruising has changed from the blue-black-purple phase to a yellow-violet phase.

Oddly enough, for the first time in my life, wearing a bra has been more comfortable than not wearing a bra. Yes, even with the rubbing issue. I had read this pre-surgery and purchased a zip-front sports bra since I wasn't sure how easy it would be to maneuver my way in and out of a sports bra. This was my best pre-surgery planning. I wore that bra day and night for the first three days straight. When I took it off for the first time Saturday night to shower for the first time, I couldn't believe how heavy my breast felt when set free. It pulled a bit on the stitches and was just plain uncomfortable.

I realize this is all very scattered but I'm just going to let this spill out as it comes to me and mention here that pain wise, I only really had pain the day of surgery. I took a Tylenol 3 shortly after getting home, mostly because I didn't want to get to the point of pain and then took one more before bed - again to stay ahead of the pain and to help me get some sleep. Saturday I may have taken one or two extra strength Tylenols and possibly one on Sunday but after that I haven't had any pain to complain about.

I stayed home all day Saturday but got really bored and restless and when my mom and sister returned from shopping (which I encouraged them to do, they didn't abandon me), I was irritable and picked a fight with my sister for no reason other than frustration. Frustration that I am not myself and incapable of being myself. Then I blamed her for not cutting me some slack and having patience with my terrible moods. Not my best moment.

Sunday all was better and we watched the New York Marathon for a bit of cheer and inspiration. We cheered the elite men and women and the wheel chairs run along Central Park South for their last mile. It was amazing. We took a short break to have brunch with my mom (who, incidentally, ordered the best pancakes I have ever eaten!) and then returned to Central Park South to cheer on the masses who were now constantly running by. I didn't know how long I could last and whenever we were near any kind of tight crowd I got a bit anxious, just afraid someone was going to knock into me. My sister stayed on my left to protect me and we found a good spot where no one jostled us. Just as I was getting tired from yelling at strangers, I saw someone I knew run by! He was one of three people I knew running and I didn't expect to see anyone since I hadn't made any plan. I yelled his name and he glanced over his shoulder as I clapped the big balloon clapper things (no idea what they are called) at him. This made me want to stay longer in the hopes of seeing his sister, a friend I was hoping to see. Unfortunately, my stamina didn't last that long. My sister encouraged me to head home before I went past my tolerance level.

As a result of Sunday's exertion, I spent most of Monday sleeping. My mom and sister ventured out to Ellis Island and shortly after they left I was struck with that weird eye-closing headache that forced me back to bed. I didn't get up until 2 pm.

Chemo and surgery may be behind me but real recovery from chemo is still ongoing. I get worn out after about 40-50% effort of what might be deemed my "normal" and I need about 9 hours of sleep a night to even have the energy for that 40-50%, but this is slowly improving. Tuesday was the last day my mom and sister were here and the weather was unbelievable - around 70 degrees in November! We went out to do some shopping and walking and cookie purchasing and luckily for me the first store we went to conveniently sold bras because my decision to wear a normal, underwire bra was a bad one. The bra dug in all the wrong places and didn't compress the way I had become accustomed to. So I bought two more sports bras that turned out to be super comfortable. Today I went into the office and couldn't bear the idea of wearing a sports bra to work so I dug out the one bra I own that doesn't have under wire and managed to tolerate it for the 5 hours or so I was out.

I went to the oncologist yesterday and expressed all my frustrations with the lingering side effects and the after effects of chemo. My number one complaint? Why had I suddenly gained ten pounds since my last chemo? I am now back up to the heaviest weight I have ever been and the only time I was here was back in May when I was giving myself hormone injections for my egg retrieval. She pointed out the obvious - I was eating about 2/3 my normal amount of food and now I am back to eating my normal (and sometime more than normal) portions but not exercising the way I used to so my metabolism was thrown off. Plus - wacky hormones. Not to mention all those ridiculous chemicals that were pumped into me for months. The hardest part is everyone has it in their head that chemo patients lose dangerous, scary amounts of weight. But that isn't the case for everyone. Chemo is such a roller coaster and everyone's body reacts so differently that weight gain is actually a very common side effect. I was actually happy that I was more or less maintaining my weight throughout. There was a point in August when I was still adjusting to Taxotere and the thrush that came with it when I got down to my thinnest point and worried that two more rounds of chemo would leave me thinner than I wanted. But for some reason, I gained weight with the next two rounds and finished on October 5th at about my "normal" weight, meaning the weight when I want to lose 10-15 pounds.

One of the uglier, unmentionable chemo side effects I experienced was extreme constipation. I think I went about a week at one point without a bowel movement. Painful, yes. And bloating, gas, abdominal pain and diarrhea usually followed. Those last two rounds of chemo these side effects hit harder than early on and I think that is why, even without eating much, my weight came back up a little. But honestly, I feel like the massive bloating and these extra ten pounds are like a giant, last "F*#@ You!" from chemo. A parting gift of sorts. Combined with the very emotional un-tethering from the routine and schedule of chemo treatment, bad days, good days, rinse and repeat, I've been struggling more in the last few weeks than I ever have. I'm not finished yet. I still have cancer. No one is telling me I'm in remission yet. I still have radiation treatment ahead of me. I am still bald. I am still losing my eyelashes and eyebrows. I am still tired all of the damn time. I am still not well enough to go back to work. I am more alone than I have been since this all started and now I feel fat.

Cancer is finally crashing in on me, around me, through me. I am realizing there is no going back to "normal." That life I had back in April is over, it is forever behind me. Yes, there will be a new sense of normal once this is over but my innocence is gone. I never seriously considered cancer even a remote possibility for me. Not now, in my 30s while I am single. Before I even had a chance to "settle down."

A couple of weeks ago as surgery loomed just ahead of me and I struggled to find pants that fit, I snagged one of my odd fingernails on a drawer. I have been keeping my nails really short as the top layer of several of them have been pulling away from the nail bed and they all have several white rings and ridges on them. In the last month or so of chemo my nails started getting really sensitive and I worried about losing them. One pulled off several weeks ago but it was relatively painless. But this one I caught on a drawer was bleeding and hurt. A lot. I was trying to get out the door during a freak October snow storm to make a bus to visit friends upstate. But everything was conspiring against me and I ended up missing my bus by 3 minutes.

I nearly collapsed in tears at the Port Authority. I couldn't face trying to get another cab in that terrible weather so I went across the street to the movie theater and bought a ticket to see 50/50. I knew I was already an emotional wreck and I wanted to wallow in it. You may question this decision but honestly, I have only allowed myself a few brief glimpses of these feelings and I just needed to dig around in them for a bit in a dark movie theater.

The movie was perfect for me at that moment. I cried, yes. But mostly in a good, cathartic way. I also laughed. And tried not to nitpick details I felt were unrealistic. It was my first glimpse at a cancer experience I could actually relate to. I've read books. I've read blogs. I've read articles. I've watched movies. I've even spoken with a few people. Nothing rang true for me. The feelings people expressed at diagnosis did not resonate with me. Various people's experiences with chemo either left me feeling like a giant baby for not pulling it together and trying harder or made me feel guilty for slipping through the whole process relatively easily.

But mostly, I have found myself secretly resenting people with a built-in support network. Sure, it has to be hard to continue to take care of kids while also taking caring of oneself but I can't help but think those people also have a purpose, someone to get well for. I am not complaining about all of the people who have been there for me but ultimately, as a single person with no one person to rely on, it is hard not to have a little resentment towards those who can turn over some of their care to someone else. I have been unbelievably blessed by people in my life willing to step up and help me. But I have had to organize all of it. And I've had to learn to rely on people who are not in my close circle which ultimately takes more effort on my part. There are very few people throughout this process with whom I can absolutely let down my guard and let in. I constantly feel the need to reassure everyone around me that I'm doing great and improving and getting better. To the point that I realize many of those people who only see me periodically through my treatments believe I've just sailed through it all and pretty much all better now. Especially since I don't have that gaunt "cancer" look they expect. Maybe if they saw me in the morning when my face is extra puffy, before I put makeup on for color and fake eyelashes to look like a person, they would realize it still sucks. It isn't over just because you can't see it.

A couple of scenes in the movie truly resonated with me. In one, the guy is sitting on the couch exhausted and his phone rings. The caller ID shows it is his mom and he doesn't pick up. The look of fatigue on his face is one I related to so well. She calls his cell and he picks up. It is hard, as an adult, to once again be reliant on ones parents. It is also difficult to place this kind of burden on anyone, especially my parents. Especially my mom. In another scene, the guy loses it and just gets angry and yells at his friend.

There is more I wanted to share about the movie but, at this point, my mind is turning to mush and I'm having a hard time forming complete thoughts. So, in an effort to get myself back into writing, I'm going to go ahead and publish this without attempting to fix the rambling, stream of consciousness mess of it all.

I'm tempted to give some reassurance here at the end that all is well and I'm just great and all of that. But that isn't entirely true. Yes, last night I went for a run and felt so much better to get out of my apartment and out of my head. And then this morning I worked out with my trainer and told her I was ready to lose the weight and be strong again. And I felt better. But that doesn't mean the darkness and loneliness don't creep in at night when I'm alone trying to pass the time until my next doctor's appointment or social outing. The hardest part about realizing you may be struggling with depression is doing something about it. When I feel terrible I have no energy to research options and when I feel good I don't feel I need to worry about it. This, right now, is the worst part of cancer.

surgery

2011-11-05T16:11:00.003-04:00

My last chemotherapy treatment was four and a half weeks ago and while my body has been slowly recovering little bits at a time, I am nowhere close to feeling recovered. Which means now the real mental test has started. Of course I had some concerns heading into surgery but I coped with that the same way I have coped with all of this, by researching lumpectomies - the procedure and recovery. On the surface I had convinced myself the surgery was no big deal - just like my surgeon told me. But early this week, as my surgery date grew closer, I stopped sleeping. It started to occur to me that maybe it isn't the actual surgery I was anxious about, it was what the surgeon might discover once he opened me up. I've also started realizing that recovery from months of chemotherapy takes longer than four weeks. Much longer. I don't have a lot of significant side effects but there are a number of lingering oddities, more specifically, and most frustrating, is the fatigue. A word I don't think I ever actually understood until now. Fatigue is not a synonym of tired. My fatigue is teamed up with gravity to just pull me into the earth with dragging feeling that can lead to dizziness and almost total shut down if I overexert myself. I can rest up enough to get out of the house and the energy of being around friends or co-workers will boost me up for a while but when the crash comes I have to retreat to my bed. A half a day at the office wears me out more than working a week of late nights and back to back all nighters. I want so much to bounce back and get past the fatigue but it does not work that way. I guess when the three phases of chemotherapy, surgery and radiation were outlined for me I just assumed the four weeks I was allotted between my last chemo treatment and surgery for "recovery" meant RECOVERY! When in fact, it was just enough recovery to give me the strength for surgery, that is not the same as my 100% normal self. To be honest, I'm probably operating at about 50% of normal. I can give a big push for certain events but I have no stamina and when I crash - I crash pretty hard. I still need to work on patience with myself. I tell you all of this to give some background on my mental state leading up to surgery and also to give you a preview of my recovery which I think will be more chemo recovery than surgery recovery.

My mom and sister arrived on Wednesday night and Thursday I felt like we had to fill the day with fun things because I was afraid of being wiped out even more for the rest of their stay (which is kind of the purpose of their stay to begin with!). We managed the important things - we went to a bakery on the Upper West Side with the greatest cookies ever (Levain Bakery if you are interested), went to the hospital for my isotope injection, did a little shopping, picked up some soup for dinner and I was beyond worn out. No stamina. No endurance.

The isotope injection was mostly uneventful. My surgeon had explained I would need to report to the Nuclear Medicine department of the hospital to get this injection of isotopes so he could locate the sentinel lymph node for removal. What I should have realized, or perhaps I should have asked, is where they would be giving me this injection . . . since the purpose was to follow the path the cancer would take out of the breast I suppose it is implied that the isotopes would be injected into the breast. I just wasn't focused on this part. And as it turned out it was kind of awkward and a little painful. At this point I really don't have any shyness about all the doctors and nurses who need to poke, prod and inspect my breast but this particular doctor happened to be the voice doppelganger of a male friend of mine. They don't necessarily look alike but lying on an MRI table with my arms over my head and the doctor standing behind me, I wasn't looking at him as he talked me through each step he was taking and I giggled and felt a little mortified inside my head (and no, I am not saying who this male friend is). The injection hurt since it was directly into my breast but it wasn't just the needle that hurt - the isotopes stung as they were slowly plunged through the needle. But I've been through worse and it was over quickly so I can’t complain. I had to wait thirty minutes for it all to seep in or whatever and then they did a brief scan to make sure it was working. This particular MRI-like machine had a plate that lowered over my chest and head and as it got closer and closer to my nose I kept picturing that trash compactor scene in Star Wars and worried that the technician would accidentally lower it too far and squish my face. Happily she performed her job well and stopped it a few millimeters from my nose.

I was scheduled to report for surgery at 7:45 am so Thursday night I took an ambien at 10 pm to get plenty of sleep and not have my nerves take over. But I underestimated my nerves and despite the sleeping pill, I did not sleep at all. And I don't mean I would sleep for a bit and wake up, I mean I never fell asleep. Actually, I did finally fall asleep – sometime between 530 and 6 am when I had to get up at 7, so I probably slept just over an hour. It was terrible. And it also meant I felt rotten walking out the door for surgery. When I don't get enough sleep my eyes get especially sensitive and do this weird thing where I cannot keep them open and I get these waves of pain trying to force all light out like I’m on the verge of a migraine but I don’t actually get the headache. I don’t know how to explain it but it is really awful. And without eyelashes my eyes tear a lot more than usual so I was a mess, dabbing a tissue at my eyes and trying to keep them open.

The surgery did not take place at the hospital, but across the street in the same building as my surgeon's office and the radiology clinic. On Thursday, as we sat in the Nuclear Medicine waiting area I created a bit of an expectation with my mom and sister when I told them how beautiful and comfortable my surgeon’s office is – not like the sterility of the hospital. They never got to see the surgeon’s waiting area. Instead, at 7:45 am we reported to the 4th floor Ambulatory Surgery office as instructed. When I opened the door I thought I must be in the wrong room. Or building. Or perhaps I had unwittingly walked into the movie Joe Versus the Volcano somehow – the scene at the beginning where Tom Hanks sits in that terrible little office with the flickering lamp. Instead of a hospital, we appeared to have walked into the waiting room of an auto repair shop. The woman at the metal desk to my right was immediately abrasive and before I had a chance to tell her why I was there or even figure out for myself why I was there she asked if we were all together and as we nodded she informed me “you only get one person.” I was already a wreck physically and emotionally from not sleeping and was not prepared for this level of surliness. I was also unprepared to send either of them home after they flew across the country to be with me for the purpose of waiting there with me and for me.

The room was uncomfortably small with the utilitarian desk filling the space to my right and six chairs with stained cushions in a small u-shape crowding the rest of the room to my left. There was barely room for the three of us to stand at the desk but I wasn’t sending either my mom or my sister home. I think I asked where they were supposed to go and she begrudgingly allowed them to both stay since there were three empty seats. Actually, there were two open seats and one seat piled with someone’s stuff. My mom and I sat in the two open seats and a man with long red hair that appeared to have been permed slowly moved the piles and piles of stuff he had out of the chair next to him. I just wanted to close my eyes and fall asleep. Or better yet, I wanted to skip ahead to the part where the anesthesiologist knocked me out. Instead the surly woman at the desk kept making me get up and down to hand over my credit card or sign something or just to annoy me. The room was uncomfortably quiet with the other two women waiting sitting in what felt like a shamed silence. At one point one of them answered her phone and the other tried to shush her up (I think they were afraid of being ejected by the woman behind the desk).

A very nice nurse rescued me from the tiny room to ask me a few more admission questions and she told me I could just keep my eyes closed. She then had me go in another awkwardly small room with a few lockers and two doors and told me to change only from the waist up. This puzzled me as I was wearing jeans and I couldn’t imagine I would be keeping them on for the surgery. She explained I would be taking the elevator so I would change out of the rest of my clothes later. The lack of sleep made me very foggy and I wasn’t clear on the fact that I would be returning to this same little room and I kept thinking I would be leaving my jeans and shoes in some other locker on another floor and apparently I muttered something about this to my sister at some point causing yet more confusion.

Once in my two hospital gowns – one with the opening to the back and the other worn over it like a robe with the opening to the front – I was introduced to an orderly who got me a warm blanket and draped it over my shoulders and together we walked back through the strange miniature waiting room and collected my mom and sister and took the elevator upstairs to the radiology clinic where I had that first mammogram that changed my life. A technician named Anna, introduced herself and took me into a room while my mom and sister waited in the very normal waiting. Once in the room I realized I was getting another mammogram. In all my research and questions this part was never disclosed. Or maybe I glossed over it or assumed when it said “mammogram or ultrasound” I was getting an ultrasound, but that was probably just wishful thinking. This was the worst part of the whole surgery.

Back when I had my biopsy in April, they inserted a tiny little “clip” into the tumor to aid in monitoring the tumor or in finding the location of it should it disappear. Anna explained the whole process and I think I almost passed out. She moved the mammogram machine this way and that and then had me sit in a chair (because I was clearly not capable of standing on my own) and she manipulated my breast into the machine and flattened it out. I then had to sit there, with it squished, waiting for the doctor to get the image in another room!! I was told not to move. I just squeezed my eyes shut and wished it all away. But this was just the beginning. Once the radiologist joined us in the small room (where I was still not moving or really breathing with my breast squeezed in the vise) he gave me a shot to numb my breast locally, then, once the area was mostly numb (more waiting with the squished boob), he injected a thick needle into my breast. With the needle still poking into me, they squeezed everything even more and took another picture and told me to hold still. I could glance down and see this needle sticking out of my breast and suddenly I was no longer tired and my eyes were not feeling so awful and I had this vision of them squeezing that machine too far and causing the needle to pop out and fly across the room. More fidgeting with the machine and the radiologist adjusted the needle once or twice to get it lined up with the clip and then he somehow used the needle that was already there to insert a long metal wire which was significantly thicker than the fishing line I was envisioning but smaller than the cable wire I initially thought of when my surgeon first explained the process. I thought I was done but the machine was once again moved around and converted and I was shifted into another possession for a couple more pictures to make sure everything was in the right spot – meaning a few more vice grip looks and then the wire was wound up a few times and taped into place with gauze and I was sent back to the waiting room.

After a short wait I was handed the films and we waited a bit longer for the orderly to come back and collect us. My mom especially liked this woman not just because her warmth was such a sharp contrast against the receptionist downstairs but because she sincerely told my mom she looked like our sister, not our mother. My mom does look young but doesn’t always believe it when we tell her. We were returned to the original waiting room where all of the seats were now empty but the red-haired guy was still there only now he was standing and talking very animatedly with the receptionist. Now that I could keep my eyes open I looked around the room some more and was even more shocked by how dingy, dark and bizarre it was. There were some Monet prints hung a little too high on a couple of the walls along with signs about patient rights. My surgeon is listed in New York Magazine as one of the top breast surgeons in the city and his office has photos of celebrities, is this where the fabulous people of New York have surgery? It is hard to imagine. Or maybe this is just one of those great equalizers. I just would have thought the great equalizer could have been nicer than the waiting area when one gets an oil change.

The surgery was the most uneventful part of the whole day – probably because I don’t remember most of it. The anesthesiologist explained that she would give me a sedative and that I would probably go to sleep but I wouldn’t necessarily be out completely. I told her I would prefer not to be awake and she said not to worry about it since I wouldn’t feel anything. She was right. After saying goodbye to my mom and sister, I was escorted into the operating room and the surgeon helped me onto the table while what seemed to me a large number of people bustled around the room. They put an oxygen mask on me and I was out. Except I have some strange memories about trying to talk during the surgery so I was clearly not out completely. Who knows what I said but I think I tried to tell them I knew they were cutting me open . . . or I was trying to ask them questions about what they were doing. I don’t know. But I did have a blue drape thing over my face because I remember opening my eyes at one point. Or maybe I didn’t since how could I have been talking with the oxygen thing on my face? At least I didn’t feel anything, I just worry what I may have said with all those drugs in me.

I woke up annoyed by the little oxygen tube in my nose but feeling fine otherwise. By the time I was completely awake my mom and sister were there with me and I was given apple juice and graham crackers and slowly sitting up. We didn’t wait too long before they told me I could change to go home. After I had changed my surgeon came to see me and told me how well the surgery went – no cancer, just normal breast tissue. He removed the tissue around the clip and my sentinel node but none of it appeared to be cancerous. It takes a week or so to get the final, definitive results from pathology but ultimately this is the best news we could get. He also commented that he thinks it will become standard to have chemotherapy before surgery because it is so successful. He also said (and I don’t think I realized this before) that I would have had a mastectomy had I chosen to have surgery instead of chemo back in May. I remembered him telling me surgery would be easier if I did chemo first but I don’t think I ever equated that with having a mastectomy. Ultimately, I’m happy with the result and pleased with the care I received – despite the weird waiting room.

We walked home after the surgery but I should probably clarify that the walk was very short and completely down hill. I live one long avenue block and two short blocks from the hospital and we walked very slowly with my mom holding one arm and my sister holding the other. I was home around noon and spent the rest of the day watching tv, sleeping and being taken care of by my mom and sister who fetched me food, water and timed my 30 minutes of icing altered with 30 minutes of non-icing. I didn’t have much pain as I took a Tylenol 3 and the ice and compression of a sports bra make it feel better as well.

Today I am still tired but I feel like that is just my normal state of being these days. The good news is I did manage to sleep all night last night which was a relief. I have a little bit of soreness today but nothing warranting pain medication since it is relieved by an ice pack. I am looking forward to tomorrow when I can remove the gauze and shower. I’m also one of those people who likes to look at what has been done to me so I am looking forward to removing the gauze to see how big the two incisions are.

I am also looking forward to watching the New York Marathon tomorrow with my sister to cheer on other people overcoming physical obstacles for a little inspiration. I still have a pretty long road ahead of me for physical recovery and I still have the final step of six weeks of radiation to complete so while I’m ready to celebrate having two out of three steps behind me, please be aware I still have a long way to go before I’m back to my self. I have high hopes for myself but I’m also having to remember to temper those expectations a bit with the reality that months of chemotherapy doesn’t disappear in a few weeks. As always, I appreciate everyone’s love and support and will continue to be a bit needy in that area for a few more months before we can definitively say it is behind us.

Post-Chemo, Pre-Surgery

2011-10-27T18:21:00.000-04:00

I realize it has been a long time since I posted. I will just blame chemo and be honest that the last couple of months have been the worst - not just physically but mentally. I have posted a couple of updates I sent to my family and friends that I failed to cross-post here for those of you kind enough to still be checking on me and who want to know the ins and outs of the past couple of months. Below is the update I sent out today. As I pulled up those posts I realized there are many other things I've been wanting to capture in words for myself that I have failed to write about so maybe as I gain more energy and as I pull myself into a more regular routine I will fill in the gaps. For now, here is the latest on where I am at today - three weeks beyond my last chemo treatment.

I am now just over three weeks past my last chemo treatment and it is starting to sink in that I am done. I have had a lot of post-chemo doctor's appointments and follow-ups and I feel like there is so much I want to share that I don't know where to start. So I will start with some really good news.
Yesterday I returned to the same radiology clinic for a mammogram where I began this journey back in April. It was a little surreal to be sitting in the waiting room filling out paperwork and remembering the thoughts and fears and concerns I had back then. This time I knew I could only get neutral or good news. The lump that led me to that first mammogram four months ago is no longer palpable which means chemo shrunk it, by how much we didn't know but all the doctors I've been seeing recently (my oncologist, my surgeon, the radiation oncologist I met a couple of weeks ago and her physician's assistant) have remarked on my excellent clinical response to chemotherapy. Plus, there was no unknown. I knew what was coming. Although I must say I felt conspicuous in that waiting room. Instead of being surrounded by other cancer patients in various stages of treatment, I was waiting with women whose worst outcome for the day could be to end up like me. I felt like a reminder sitting there with my bald head. After I was called into the second waiting room where I had to change into a pink gown and sit in a nearly refridgerated room I pulled out a wrap to keep myself warm. An older woman commented that I was smart to bring something since it was so cold and I said I learned the hard way as I was unprepared last time. I could tell women wanted to talk to me, ask me questions, make comments. Another woman came out of the changing room in her street clothes and leaned over to tell me she was a three year survivor and asked me how I was doing. Another woman then joined the conversation indicating she was a fifteen year survivor and we swapped treatment stories and chemo side effects and they left me with promises of returning hair and eye lashes. My wait felt much shorter than last time and before I knew it I was back in the mammogram room with a technician wrapping a lead apron around my waist and positioning my left breast between the plexiglass plates and squeezing it in the vice grip. I held my breath and gripped the bar on the machine just as I did last time but it felt like a different view into my future than that first one. Rather than a glimpse at being the first step towards an altered world I envisioned this as a regular checkup I will be doing for the rest of my life to ensure I am never at this point again. Before long I was back in the waiting room waiting for my name to be called for my ultrasound. The ultrasound was also quick and the technician dismissed me without having a doctor barge in and scare me with details of biopsies and surgeons and closer looks at my lymph nodes. No, this time I asked to see the doctor before I left. I wanted to know for myself what they saw in those images. When the doctor came in he was difficult to understand through a thick accent and seemd a bit dismissive and unconcerned. I asked if the tumor had shrunk and by how much. He didn't appear excited to inform me that it wasn't visible on the mammogram (YAY!) and that on the ultrasound it had shrunk to a small "nodule" as he put it. Why he couldn't be more enthusiastic about this excellent news, I do not know, but I was excited. I asked him a few more questions to ensure I was hearing him correctly and he said I still needed to see my surgeon even with the near disappearance of the tumor. I agreed and told him my surgery is scheduled for next week and I wasn't planning on skipping that step.

Then I called my mom. And my dad. And posted the good news on facebook. I realize there is still a "nodule", whatever that means and that there are still several steps to go before I can be declared in remission or cancer free or whatever it is they will say, but I am spreading this good news because it confirms that I made the right decision to start with chemotherapy. All that pain and inconvenience and side effects have accomplished something. It wasn't for naught. Back when this all started, that first time I met with my surgeon and he asked how I felt about starting with chemotherapy and I asked "how should I feel about starting with chemo?" he told me if we could shrink the tumor I would have an easier surgery. And now, just a week away from that step, I'm looking forward to having an easier surgery because that tumor has shrunk - a lot. I saw my surgeon again on my last day of chemo and he walked me through what would happen with the lumpectomy and once again answered all my questions about how I should prepare and what would happen and what might happen and what could go wrong and how will this effect me and while I realize this is still surgery, I think I'm primarily just fascinated at what doctors are able to do. I mean, I know that fluke things can happen but my surgeon is good and he is confident that this will be pretty easy - especially relative to what I've been through. He will remove the sentinal node from my under arm so I will have two incisions but even that he does not believe will hamper or impair me for long and he encourages me to start my daily activities right away. He also encouraged me to start exercising right away and indicated I will be able to run again about a week after surgery.

Of course, I will update everyone on how all of this actually plays out next week since I have definitely learned that things don't always play out in quite the same manner as doctors predict. For example, you may recall that back in early August when I started my taxotere infusions I was told this would be a lighter, easier chemo drug. Unfortunately that was not the case. While it was good in many ways to be on a three week cycle to allow me time to recover, my side effects grew with each treatment to fill that entire three week with a parade of difficult, annoying or distracting issues. Plus, the cumulative effect of all of those chemicals has flat out worn me out and dragged me down. I was tired of organizing my own care, tired of asking, tired of taking, tired of the simplest thing taking so much effort. I was also growing tired of traveling. I gained so much from my first two trips home to Utah that occupied my "good" weeks that I decided to schedule another and then just one more. And now, having just returned from another long weekend in Salt Lake, I have to say I am ready to embrace a life back here in New York City. Each trip boosted me in some way despite the effort it took to get there and back. At the end of September, just before my last treatment, I was able to attend my ten year law school graduation (putting my wig to use for the first and possibly last time), hike (slowly, with many breaks) in the beautiful fall foilage at Guardsman's Pass, attend the homecoming football game at Utah and catch up with family and a few friends. This last trip I helped pull off a surprise 60th birthday party for my mom with a significant portion of our family that included one of my brothers and his one-year old traveling with my from the East Coast as well as her parents and several of her siblings. The surprise was absolutely worth the sacrifice.

But as much as I would love to continue to travel around and catch up with everyone who has supported me along the way, I have to admit that it will likely be a while before I am 100% again. I went for a run this morning in the wind and a light rain and was reminded as I slowly ran through the nearly empty park along the Hudson River that I'm not going to always be on an up and up and up trajectory - I still have bumps in the road and setbacks that might come. So I fell slightly short of my 2-mile goal. For example, a couple of weeks ago I had some side effects cropping up that had never appeared in the entire course of treatment. Despite the fact that I was coping with thrush (a horrible side effect that burns out my taste buds and makes it difficult to impossible to eat), I was extremely bloated and suddenly none of my pants fit. When I finally called the doctor about it I had convinced myself in the middle of the night that my cancer had spread and this was the sign. I was in a bad spot in my head because I was tired of being sick, tired of the ever changing reactions of my body and feeling extremely disconnected from my own life. When I saw my oncologist I had gained five pounds in two weeks - two weeks when I was probably only eating about 800-1,000 calories a day. I broke down in her office and then apologized because I wanted to continue to be strong but didn't know how to keep carrying this burden because I felt like I was past the deadline and it should all be over. She reassured me that this is normal - the bloating we would monitor but the emotional breakdown is often what comes at the end of treatment because I was feeling unhinged from the cycle and schedule of the chemo. While I wanted to celebrate the end and appreciated all the texts, emails and phone calls to celebrate the end of chemo, it didn't feel over when my body was still reacting and it doesn't feel over while I still don't know if I am absolutely done with cancer. Moving on to the next step is a relief but also scary. I consoled myself with research into the next steps. And feeling my body get a little bit stronger each day helps as well, as long as I allow myself plenty of rest.

Another bright light at the end of the tunnel - my hair is coming back. I'm still bald and the growth is not significant but it is happening. The little stubbles of hair that never fell out are growing and when I run my hand over my head I feel longer, softer hairs instead of prickles. Also, there is a little bit of white downy hair that has cropped up. It is most noticeable in the bright sunlight and from what I have read this is a common sign of first hair growth post-chemo. I am baffled that my hair knew to start growing within about two weeks after my last treatment but happy it is ready to move on. The truth is, I'm tired of being bald. Not tired enough to commit to wearing a wig full time but tired of the novelty of it, tired of the effort it takes to coordinate a scarf or hat or something to put on top of my head each day, especially now that the weather is getting cold and instead of protecting from the sun, I need to keep myself warm. But to be honest with you, I think the reason being bald has suddenly become more of a burden, I think it is because I have lost the majority of my eyelashes. I noticed them falling out sometime in September. I'm lucky that I've always had a lot of eyelashes and that my eyebrows have always been something I've needed to tame rather than worry about filling in. I no longer have any bottom eye lashes and my right eye has about 8-10 lashes left while my left has held on a bit more firmly but is pretty thinned out. When I went to my law school reunion last month I had false eyelashes put on and suddenly I realized where my own vanities lie - I suddenly felt like me again. Not because I was wearing a wig, but because I recognized my own eyes. In the morning especially, when my face is often puffy and more often than not I have dark circles under my eyes, I look in the mirror and I miss the healthy version of myself. Lacking eyelashes I feel more like a cancer patient. I don't see any signs of regrowth there and I'm pretty sure I won't feel like myself until I have them back and who knows how long that will be.

Before I close out on this overly long update (but do I really know how to write anything that isn't long-winded?) I should share one more bit of good news. I met with a radiation oncologist a couple of weeks ago and held my breath and crossed my fingers when I told her the timing of my Patagonia trip. I met with her hoping she would accept me into a clinical trial which would cut radiation down from six weeks to one week! I researched and research the brachytherapy hoping I was a candidate but unfortunately, I am not. Since my cancer had advanced into my lymph nodes she could not recommend the newer, less definite form of radiation. So I told her I am planning on being out of the country from December 23rd to January 10th and she pulled out a calendar and started calculating. This was on October 12th, after my mom and sister had booked their flight for my surgery, after I had booked my flight to Utah for my mom's surprise party and for a moment the doctor suggested we move surgery up to the following week (last week) and rush into radiation immediately after a short recovery. My face must have conveyed my concern over this rushed and amended schedule because before I could respond she nixed that plan and said there wasn't any reason we couldn't wait until I return and suggested we have everything else done - a PET scan and a simulation of the radiation so they know exactly where they will radiate - before I leave. I agreed to that plan and will have all of November and December to devote to recovery and building my strength and endurance for the trip. Time I realize I really need to give my body and my mind to recover from week after week of chemicals being pumped into my body. The fight is not yet over and I fear the finish line is being pushed a couple of months into 2012 but my hope is that the worst is behind me.

Red Rock Relay and Chemo #7

2011-09-15T18:13:00.001-04:00

Recovering from my last chemo treatment felt long and drawn out. Harder than my prior treatments not just physically, but mentally. I went nearly ten days without eating solid meals due to flush and mouth sores which destroyed my appetite and ruined all taste buds. My concentration and patience were shot and I just wanted to curl up and sleep through the middle of October when all of this chemo stuff would be over.
Lucky for me my visitor that week was my dear friend Shannon - a psychiatrist and excellent care taker. She was perfectly content to sit and read in my apartment and listen to my whining and tolerate my moods. She was also at the ready when I needed to talk me through my dilemmas about medicines to take and frequently pushed Ensure and Boost shakes at me when I didn't realize hours had passed without any desire for food. Oh, and she tolerated me forgetting that maybe she wanted to eat despite my lack of appetite.
But the best thing Shannon did for me was near the end of her stay when I started seriously questioning my decision to not go to Southern Utah for the Red Rock Relay race I as supposedly captaining. I did my first relay race last summer a couple of days before my 35th birthday and surprised myself with how much I enjoyed spending over 24 hours in a van driving and running through the Wasatch Back mountains between Logan and Park City, Utah. I bonded with old friends, made new ones, learned that I could run three separate challenging runs in roughly 24 hours and discovered a 2 hour nap on a blow up mattress in a teammate's family cabin plus a steamy shower and the most delicious egg sandwich ever was fuel enough to get me through a gorgeous run in Heber Valley with hot air balloons rising on my left and the snow capped back side of Mt Timpanogous to my right. I knew I couldn't run but I felt this emotional draw to just being at the relay I had been planning for close to a year with my oldest friend - the one I met in junior high gym class, the one who gleefully ran her laps around the junior high "track" while I cursed every step and wondered what was stabbing me from the inside of my side while she trotted along with me after she was finished to encourage me.
With only a week to go before I needed to be in southern Utah for the race I looked up flights to St. George - which also happens to be home to my grandparents and some other relatives. I was suddenly craving the opportunity to see them along with the race and my sister and the friends who I had helped talk into running this crazy relay. I knew I couldn't possibly run. The race started at Brian Head ski resort at an altitude over 11,000 feet and ran past Cedar Breaks and over to Duck Creek Village on top of Cedar Mountain - a mountain that is near and dear to my heart from childhood camping trips and my early years of independence as a freshman and sophomore at Southern Utah University when I would escape up that mountain at every possible opportunity. The race runs down Cedar Mountain to my college town of Cedar City and then continues west into the desert to the tiny hamlet of New Castle before turning south to Veyo and on toward St. George before turning east through such towns as Washington, Hurricane, La Verkin and finally to the finish line in Springdale - just shy of the entrance to Zion National Park. I have memories as far back as my chronology reaches of these places and roads and scenes. I ached to see the mountains, the red rock, my little university where I showed up as an 18-year old in search of mountain air and independence, and maybe a little education. In my head I ran through the hikes I had memorized from Cedar Mountain with the thin air pounding in my chest and glimpses of red rock through the pines, Navajo Lake, the view of Zion from the top of the mountain and it was hard for me to imagine anything more bolstering. My soul reached out and craved it.
A flight to St. George from JFK via Salt Lake City turned out to be only $400 with only a week to go. It was a sign. I wasn't going to be financially punished for my procrastination. Plus, I could see my grandparents. I couldn't remember the last time I had seen them and I longed to sit with them and look out the front window toward the Red Hill I scrambled all over as a child. Simple, familiar sites called to my soul.
Before hitting purchase I called my sister. No answer. I called my mom. No answer. I called my co-captain, Amanda, who for the last few months had taken over all captaining of our team as I pulled the covers over my head, depressed that cancer was taking yet another planned event from me. Amanda answered the phone and as I blurted out that I wanted to come my enthusiasm was matched and she told me she knew before she picked up the phone that I was coming. She just knew it despite the fact that a few weeks earlier I had confessed that I didn't see how it was possible. When I called her I still wasn't eating solid meals. My last run was a week prior but it was a slow, plodding trot at sea level. I knew I couldn't run hills at altitude. I was lethargic and in danger of spiraling into the worst wallowing period since I heard the words "It's cancer." I didn't want to go to that place and talking to Amanda pulled me out.
I booked my flight and began studying every page of the Red Rock Relay Zion website. The next morning, September 1st I was inspired to try and run. I made it one mile in 13:59. Slower than slow but I did it. A few days later I ran a mile and a half in 20 minutes and missed my two mile goal when I just couldn't manage to put one foot in front of the other again without fear of collapsing or puking. So I bought an ice cream bar to cool my mouth and sat on a park bench to watch the river and the people. People who were healthy. And I thought to myself, it can never be as difficult as it is right now to run. If I can get through this next month I will be so much stronger for it. I will never again be this slow. It can't possibly be as difficult to run a mile as it is right now when I have to stop every half mile and walk and then every quarter mile only to collapse before my simple two mile goal.
I was closing in on two weeks post-chemo and I managed to return to the office for brief appearances and by Wednesday I began eating solid food. I also met with my surgeon. That visit bolstered me. He examined me and confirmed that the lump was no longer palpable - chemo was doing what we had hoped, shrinking the tumor. He reminded me of my favorite statistic (the one I have tried not to pin all my hopes to for the last few months) - that 25% of lumps disappear when chemo is administered prior to surgery. He then said he is "due" for one. These were magic words to me. Words we urge my mother to iterate during tight sporting events because my family has a superstitious belief of their power when she says an opposing team member is "due" to miss a free throw or field goal. I wrote the words in my notebook with a smiley face next to them and tucked them away in my hopeful heart.
He described the outpatient surgery in detail, including the part about removing the sentinel node from my armpit and answered all my questions about the dreaded lymphodema reassuring me how closely he would monitor that and how rare it is in his patients. I asked when I could start exercising after surgery and he said as soon as possible I should return to all my normal activities. I liked that answer. I asked about incisions and he calmly walked me through a book of photos and showed me what his incisions look like and how they differ from some in the book and why (so as to not pull the nipple off center). We made an appointment for October 5th after my last chemo treatment to set a date for surgery and all of the other scans and whatnot that will have to be done.
That night I packed for Utah and exchanged a flurry of texts with Amanda and my sister. My enthusiasm kept me up too late and my 415 am alarm went off far too early Thursday morning. I was upgraded to first class and ready for my 7 am departure. Unfortunately we managed to taxi out to the runway where we stopped. This isn't so unusual but as I finished the end of the first book I had with me I noticed that other planes were passing us in line and the captain hadn't made any announcements. Plus the flight attendants hadn't sat down yet. Not good. When we finally turned back onto the runway the flight attendants sat down without prompting from the captain and I thought it was time to take off. Unfortunately the captain finally decided to deliver the bad news - we had some sort of check engine type light illuminated and we were heading back to the gate. Ugh.
Nothing to do but sit and wait and open book number two and chit chat a little with my seat mate. Oh, and call Delta to rebook my connecting flight I was sure I would miss. Bless the iphone and the Delta app for having easy access to flight schedules so I could be reassured before I even had an agent on the phone that there was a later flight available. We were delayed about two hours, just enough time to land when my connection to St. George was taking off. But I was confirmed for a 3 pm flight which gave me plenty of time to have lunch with my dad at Su Casa during my layover. Thank goodness for the timely return of my taste buds.
I kept in touch with my teammates as they piled into cars and vans for the drive to Cedar City as I waited for my flight and looked around to see if anyone else appeared to be heading for the race. When I finally boarded the tiny little prop plane I had already noticed the woman who was talking - far too loudly for my taste - to everyone she encountered, including the gate agent while I impatiently waited for a seat assignment. I should have listened to her a bit more carefully because as luck would have it, she was my seat mate for the flight. She was already talking when she entered the plane and didn't stop until I hurried down the ramp to leave. When she stopped pestering the poor boy returning from his mission in the row behind us she turned as asked me "who are you?" I was trying to bury myself in my book and was caught off guard by the question and told her she doesn't know me, I'm not from the area.
But I didn't guard my southern Utah roots closely enough because she continued to ask questions and I eventually confessed to staying with my grandparents. And of course this woman knew them. And went to high school with my aunt. And had opinions on them and others in my extended family to share. She talked without stopping and without transitions as she flitted through whatever thought passed through her head on the 45 minute flight that felt significantly longer. She overshared about every piece of family information that entered her head, never pausing to consider that maybe I wasn't interested. Eventually I gave up on my book and gave in to her ceaseless monologue despite enduring questions such as "why are you bald? Is it cancer?" that seemed to drop out of nowhere and to which she really didn't want an answer. Welcome to the small town world from which I am only a generation removed.
My aunt and her new husband (both of whom knew my seat mate from high school) were waiting in the airport for me and they paused to greet this woman briefly and we laughed about the whole thing all the way to my grandparents house where I was able to visit for an hour or two before getting a tour of my aunt and uncle's condo which they had kindly offered as a home base for my relay team while they were away for the weekend. Then Amanda and her mom picked me up and we drove to Cedar City to meet up with our teammates who were gathering at the Spring Hill Suites. My sister was there with the team t-shirts and a surprise "Pink Power" tank top she made for me to run in. Amanda's husband, Matt, my high school friend Michele and a couple of returning teammates from last year's relay team were also there as well as new relay friends. We had two suites we all piled into for the night after decorating our team vans - an Excursion affectionately known as the Canyonero borrowed from Michele's generous and trusting parents - and the very awesome Sprinter van contributed by a new team member who also gave me a Honey Badger t-shirt (for my team code name) despite the fact he had never met me. I was exhausted but adrenaline kept kicking in and pushing me forward as team Technical Running Ponchos bonded in the parking lot and prepared for our first sleep over.
The next morning I woke up far too early. I could blame east coast time or hearing cars pulling out of the parking lot since I was sleeping next to the window or the air conditioner that was too cool when on and not cool enough when off. But really, I was just so happy to be there that I was ready for it to all get started. So I got up way too early and showered which prompted others to rise earlier than planned as well. Our room was full of "van 2" runners and while our first van of runners had to be at Brian Head before 8 am, according to my rough timeline estimate we didn't need to be at the first exchange at Duck Creek Village until 130 pm. But we were up and eating breakfast and packing up long before then. Afterall, we needed to get gas, a few extra grocery supplies and, of course, stop at D.I., the local thrift store, so a few of us could fashion some ponchos from ugly blankets and, in my case, an odd shower curtain. I also discovered a little ceramic mule/burro which fit our van theme rather well who got strapped to the tray on the back of the Canyonero next to the coolers where he stayed until the last leg of the relay when it was his turn to run and cross the finish line.
I drove up Cedar Mountain and was overwhelmed by memories and the beauty of the mountain in the morning. I pointed out whose running route we were possibly driving through and warned my teammates when we were close to an especially impressive vista so they wouldn't miss the sites - like the view of Zion where we would be finishing our race the next day.
It was sunny and cool and just a little breezy when we reached the exchange. The parking lot was packed with festively decorated vans and people in a variety of running clothes and costumes. We donned ponchos to keep the breeze at bay and snacked in the parking lot and our in-van barista made coffee for the caffeine addicts. When the breeze took a sharp turn I joined Michele under her extra large, authentic poncho from Tijuana and we all watched the dark storm clouds approaching from the west.
Before we knew it, they were on top of us and the lightening and thunder that had been off in the distance was cracking within seconds of where we were standing. By the time our first van reached the exchange to wait for their last runner it was pouring rain, thunder was bouncing around the mountains in rolling succession and lightening felt nearly instantaneous. They opened the back doors of their van and most of our team stood in or just outside the doors while people took turns staring down the road looking for our sixth runner. I had layered capri leggings over my running shorts, pulled on my hoodie and a rain jacket and still was chilled. Soon it was hailing, just to make the whole thing a bit more epic. The parking lot had thinned out significantly and when we finally saw our runner, we yelled and cheered and the team met her with hugs and sent van 2's runner off into the elements. Her husband wrapped a fleece around her and despite the goose bumps and having just run her longest distance ever in her short running career in thunder, lightening, rain and hale, she was smiling. Inspirational, right from the start.
My half of the team said goodbye to van 1 until Cedar City and piled into the Canyonero for our legs. After two more exchanges it was my turn. I was running with Michele for a 2.9 mile leg called "Top of the World". I didn't know how much of it I could run and warned Michele I would be super slow. We were running back up to the summit of Cedar Mountain starting at an elevation of approximately 9,700 and finishing at 10,000 feet. The terrain was primarily open fields just past Navajo Lake with sheep grazing peacefully, except when Michele happily ran through a cluster of them to make me smile at one point as I walked to catch my breath. I started out running for a solid half mile. I needed to warm up in the chilly mountain air despite the fact the rain and thunder was gone, the sun wasn't out and it was possibly as low as the low 40s or high 50s and I longed for the long sleeved shirt I opted not to bring with the sleeves that reached over my hands with thumb holes. After that first half mile I was never able to run for long. I walked until I could breathe normally again and trotted along slowly with Michele dropping behind me when a car approached as we were running on a narrow shoulder in reflective vests. Before we reached a mile and a half I was entertaining thoughts of quitting. My lungs were burning and the distance felt insurmountable. Our support van was stopping every half to one mile to cheer us on and crossed the street to offer water and words of support and an excuse to stop for a moment. But I didn't get back in the van. I gave myself permission to walk as much as I needed - and that was most of the way. Other vans cheered for me. Perhaps for my bald head, perhaps they could read the "Suck It Chemo" mantra I had my sister write on my back that was half-hidden by my reflective vest. Perhaps they were just nice to weak runners. We were passed by many runners but one will always stick out in my head. A woman ran past and then paused. She explained that she is a ten year cancer survivor and was a beacon of hope. She had had a brain tumor and yet there she was - running. Running with strength. I thanked her and wished her well on her run. Her team van was the most supportive in yelling out support each time we saw them.
With just a few hundred yards left to go I told Michele I was running it in. I took the slap bracelet baton from my wrist and pushed and pushed. I heard Michele comment over my shoulder that I really was picking up the pace as my heart pounded harder and harder out of my chest and I took short, gasping breaths. When I finally made it to the exchange I wanted to collapse and there was my team mate waiting to receive the baton but instead of sticking out his arm to take the bracelet and run, his arms were wide open ready to receive a hug. I collapsed into his embrace and fought back tears of victory. I took 45 minutes to go just under 3 miles with an average pace of 15:37/mile. A far cry from my 3.6 mile corporate challenge race back in June which I completed in 40 minutes just two weeks after my first round of chemo but the important part is that I finished. I didn't quit. And my team encouraged me and supported me and was just proud of me for showing up.
I took a leg to recover and then resumed my driving responsibilities to witness my sister's fastest run ever down a steep and fast 6.6 mile stretch called Speeder to Cedar. She barely waved to us when we stopped to offer support. After just one more runner we were at the next major exchange around 7 pm to pass the baton to our first van and take a break.
While we were there I ran into one of the race directors, Matt Ward - one who shortly after I registered as captain early this year sent me an excited email asking if I was really coming all the way from New York City to run the race. Despite confessing to my Utah ties, he still sent me a free hoodie for my travels (a hoodie I wore most of the flight there). In April I stopped in Utah for a weekend after a work trip to San Diego and went to the Salt Lake Marathon expo with my sister while she picked up her race bib and met Matt Ward in person. We introduced ourselves and expressed our enthusiasm for the still far off relay. That was April 15th and despite a grueling work and travel schedule I was training for a half-marathon and my sister convinced me to sign up for the 5K that was the next day along with her marathon. I ran that 5K at an unaccustomed altitude with some not so insignificant hills in 32 minutes. The following Tuesday my doctor discovered a lump in my left breast and within 12 days I was told it was cancer. The 10K I was registered for in May was missed due to fertility preservation efforts, the half-marathon I was to run in Seattle was canceled and every run grew slower and harder as the summer progressed and more and more chemicals were pumped into my body on a bi-weekly and then tri-weekly basis.
In Cedar City, I had dinner with my van-mates and then wished them luck over night as I returned to St. George to pick up groceries for breakfast and supplies for Saturday and then some rest. I talked to my mom on the 45-minute drive to keep myself awake and after wandering through the grocery store with "Suck It Chemo!" still emblazoned across my back. I was at the condo by 1030 pm and ready to pass out. I showered and set up an aerobed with more difficulty than it required in the front room and drafted a note to Van 1 about 3 times explaining where the beds and bathrooms were. I set an alarm for 3:45 am hoping to get up in time to make them some breakfast before their 5 am start time.
But I never saw them. Never even heard them. I missed them by about 15 minutes. I don't think they made a sound as they came, showered, slept and made breakfast. The only reason I knew they had been there was a note apologizing for the dirty pan on the stove. I dozed for another hour or so until I heard the sucking of air that came from the front door opening announcing the arrival of my van - apparently I was much more tuned into their movements. I poked my head out over the loft railing and whispered - despite me being the only one sleeping in the place - that I was awake. They stared at me dazed with fatigue. I went downstairs and explained where the bedrooms were. They stared. So I pointed at people and directed them to bedrooms and told them where they could find showers and towels. They collapsed.
A couple of text updates from Amanda in Van 1 made me nervous about being late for the exchange in Washington but after consulting the routes I knew there wasn't too much rush. Her husband wasn't quite so reassured and, as he explained it later, he was in a bit of a "dither" cooking eggs, making coffee and packing supplies back out to the van as I roused various teammates from their 1.5-2 hour naps asking what they wanted to eat. We managed to get everyone awake and fed and into the van with near perfect timing since we drove the short 15 minute drive to the exchange only to arrive at the parking lot at the same time as our first van. We caught up on overnight happenings and warned them how we had left the condo in much poorer shape than they had and congratulated the on finishing all three of their legs and they wished us luck on our last leg of the course - a grueling 37.2 miles across the heated red sand desert in the sun. No one dreaded their last leg more than my sister. We had a long morning and afternoon ahead of us.

But we stopped for ice and slurpees (at least I made my sister drink one) and once again enjoyed the camaraderie of our van-mates and made sure to stop frequently for our runners to squirt them down with a spray bottle and dump water over their heads and encourage the drinking of water and electrolytes. I was proud of every single one of them but mostly my sister for facing her greatest fear - running in heat. She ran 7.5 hard miles in the heat and ran them better than she anticipated - with a cold. Her perseverance inspired me as I geared up for the last of my running - the last mile of the last leg to Zion.

But before I get to that I have to share one of my favorite anecdotes from the race. Humorous anecdote, I should add. I was driving the Canyonero during Erin's last leg and pulled off to the side to wait for her. I was sitting in the driver's seat glancing in the rear view mirror as other teammates stood in the sun watching for her approach from behind the vehicle as well. A man from another van pulled off in front of us paused at my window and asked if he looked sunburned. I told him he wasn't quite red but probably could use some sunscreen in the brutal sun and at this altitude (which had dropped from the 10k from the day before down into the 3-4,000 foot range, but still, this is the desert - when in doubt, add more sunscreen). I offered him some of mine that was readily at hand. He declined and then added, with a sarcastic smirk "I'll just get skin cancer some day." I quickly removed my hat and retorted "I've got cancer, trust me, you don't want it." I was trying to be funny, mostly. But his face fell. I know he felt foolish and he said he would take some sunscreen to make me feel better. I squeezed a generous amount into his palm and wished him well. Then, after he disappeared I told my teammates and we all had a good laugh. I mean, what are the odds? We say those types of things all of the time but when do you ever imagine you will say it to someone with cancer? I saw the man again after the race and he approached me and said something very gracious which I forget because I was so dazed and overwhelmed by emotion at that point. But I appreciate the interaction all the same.
When our last runner set out, there was the tiniest bit of cloud cover and a handful of rain drops fell. Michele took over the driving and I readied myself to run. I told Matt I would meet him for the last mile of his 6.7 miles to the finish. We parked in a familiar parking lot in Springdale near a restaurant I love for its bumbleberry pie. I didn't think about it then but now I wish I had picked one up, it is so rare I have the opportunity to eat it. I had time to nervously go through my pre-running routine with a little tai chai and active stretches. I sprayed down a few passing runners and watched for Matt's approach. Nervous. And bubbling up with emotion. I was already a little teary in anticipation of finishing the race.
When Matt reached me he slapped the bracelet around my wrist and we took off. He slowed down but I was full of adrenaline and started to fast - close to a 9 minute mile, way beyond my abilities. I warned Matt I needed to slow down and he complied. I also warned him this would be emotional for me and I would probably cry. He said "yeah, me too." And we continued in silence until he asked "did you ever picture us here when we were in high school?" again, my emotions were caught in my throat and all I could say was "no" and we continued in silence again. I made it to a half mile before walking and cursed the fact that the last mile had to be uphill. I alternated walking and running for that last half mile and paused once to pluck a sunflower from the side of the road to place behind my ear and Mumford & Son's lyrics to "After the Storm" bounced around in my head "And there will come a time, you'll see, with no more tears. / And love will not break your heart, but dismiss your tears / Get over your hill and see what you find there, / With grace in your heart and flowers in your hair." I knew I just needed to get over the hill, I felt grace in my heart and now I had a flower, despite my lack of hair. We made a left turn off the highway towards the finish line and ran into our teammates piling out of the van. I was walking to catch my breath and the sight of them flooded my heart and we all started running together despite the fact I kept saying I couldn't run anymore. We made a right turn and on the other side of a short downhill and uphill dip I saw the rest of my team - showered and rested and beaming at me. The tears poured down my face and I believe I once again said I couldn't do it but someone took my arm briefly and at the top of that last hill I was told to just make it across the grass. I pushed through the first gate where an announcer gave our name over the P.A. system and we ran across the grass to the finish line where I collapsed with my team members surrounding me, hugging me, kissing my head as I cried tears of joy and tried to slow down my heart. That mile took 13 minutes but it felt so much more epic than that. I felt I had overcome so much more than a short little mile. I completed a modified version of a goal I thought was unattainable for me this year, after 6 rounds of chemotherapy. The ending was such a blur of emotions. I stuck my head under a sprinkler set up for cooling runners before posing for team photos and various combinations of teammate photos. Time stood still and raced ahead all at once.

I needed to swap t-shirt sizes at the gear booth and waited for Michele and Erin to retrieve my size small from the car while my team members browsed through the gear for sale and sucked on snow cones. I secured a size medium as I waited, promising to give the volunteer my small as soon as my friends returned from our van as a girl smaller than me glared at me for getting the last medium. The emotions swelled back up and I started to feel abandoned. I sent another teammate off in search of my sister and stepped away to get a snow cone, promising the volunteer I would be right back. Eventually another team mate took my space while I looked around a bit and she convinced the volunteer to just let me have the shirt without waiting. Of course, eventually, Erin and Michele arrived and added our too small, small shirt to the pile. Our team congregated once again as we readied to head back to the condo for food and rest when I spotted Matt Ward, the race coordinator I met at the SL Marathon Expo.
I walked over to thank him for the experience, for the beautiful scenery, for the chance to participate against all odds, to explain what had changed for me since I met him and to commit myself to returning to run for real next year. He greeted me with a hug and said he had seen my bald picture on facebook and had his suspicions. He introduced me to his dad and then told me I could run for free next year. I thanked him profusely and once again my emotions swelled as I returned to my team to inform them of his generosity. As tears streamed down my face once again, he was back at my side, asking if I would mind joining him as he made an announcement. I have learned over the last few months that the more I put my cancer out there, the more I share it with others, the more I gain in return so I had no choice but to say yes. This journey of mine was not meant to be mine alone.
We ran across the grass to the P.A. announcer and after asking the DJ to turn off the music, Matt Ward took the microphone and began telling his version of the story of meeting me, interrupted from time to time to announce the finish of other teams, including the team with the cancer survivor who encouraged me at the top of Cedar Mountain the day before. I do not remember reminding him of my name but he introduced me as "Alyssa Englund, my friend." It touched me deeply that he knew my full name. It touched me even more when he choked on his words as he describing meeting me months ago, before cancer was discovered, while I still had hair. And I nearly collapsed when he told me I was welcome to run his races for life. Amanda got it all on video and I honestly do not trust my memory of all of it until I am able to watch it because I was so overcome with the beauty of the moment.
I still am.
I often feel guilty for sucking everyone I encounter into the black hole of cancer that has dominated my life since April. I find myself repeating symptoms and prognosis and treatment schedule and anticipated surgery and radiation schedules ad nauseum. I don't want to be one note. I don't want to pull everyone into this dark place.
But the surprising thing is that it isn't always a dark place. By opening up to others, by sharing this journey, my load is lightened and grace enters my heart and I am buoyed up to a point where I am now a stronger, better person for it. When I left for the Red Rock Relay I hoped it would be a salve to my wounded soul and what it gave me was so much more than that. I returned to New York with the positive dedication to kicking cancer's ass that I shouted out at my diagnosis. The lull I felt through August is behind me.

I went to chemotherapy treatment number 7 yesterday with a smile on my face and no anxiety. I had - no, I have - no fear of the side effects to come for I know they are temporary and I know that I have each and every one of you cheering for me along with countless strangers, some of whom made comments to me as my team returned to our van. Some of whom include people like my drycleaner who Tuesday commented how often he thinks about me as I dropped off my bag of laundry despite the fact that I don't recall the last time I saw him. During music therapy yesterday I sang with abandon, especially the words to Mumford & Son's Timshel of "you are not alone in this / you are not alone in this" and Tom Petty's words "Because I'm free!! / Free falling!!" I do not have a good voice, I never have and that was confirmed years and years ago as a freshman at SUU when my sight singing professor grew frustrated with the fact that I knew where the words should be but couldn't make my voice follow. But yesterday I felt I could sing. Nurses commented on my voice and I felt grace in my heart again. I actually felt a slight twinge of sorrow that I only have one more music therapy session left, despite the fact that the reason for that is I only have ONE MORE CHEMOTHERAPY TREATMENT LEFT!!!
My journey isn't yet over, my side effects from yesterday's treatment are still ahead of me but my doctor reduced my dosage by 25% so I am hopeful that means I will feel 25% better than before in the coming days. My greatest hope is that I will be able to make it to the Susan Komen 5k on Sunday in Central Park to greet - and possibly slowly walk - with the co-workers and friends who have registered on my team. I have not yet had an opportunity to thank all the individuals who have donated but know that I appreciate every cent and someday I hope to thank every single person who has stood by me through all of this. Your love and generosity and support is more meaningful than you can ever imagine. There is still time to donate and/or register for the race. I would love to see you there on Sunday morning as I anticipate it being one more bolstering moment in this journey to carry me through my last treatment.

Chemo #6 and Irene

2011-08-29T18:11:00.002-04:00

This "lighter" dose of chemo was supposed to be easier but it has been much harder than the first half. I have more side effects that stretch out for longer and are more severe. It is hard. To say the very least. Each day post-chemo I feel more and more fatigued and some new thing flares up in my body that I have to question whether I just suck it up and deal or call the doctor and figure out a solution.
On Saturday morning I woke up feeling better than expected but in retrospect I think most of that was adrenaline from all the Hurricane Irene hype. I didn't sleep well the night before despite artificial assistance, I was restless. I knew there were things I needed "just in case" and I wanted to get out to the store early. I was up by 7 am and managed to slowly make my way to the grocery store by 8 am. There wasn't anything in particular that I needed but I did have one crazy craving . . . avocado. Earlier in the week when my parents were in town I had made my favorite Mexican salad and after polishing it off a couple of days earlier I was craving more - especially the fresh avocado. So I went to the store not necessarily for water (though I did grab a gallon) but for avocados and lettuce and tomato. Oh, and why not some hummus, milk and orange juice? For a Saturday morning at 8 am, there were a lot of people at D'Agastino's. In fact, I don't remember when I have ever seen that many people in that grocery store, let alone before noon on a weekend. As you may have heard, NYC is known as the city that doesn't sleep. What you may not realize, is that it primarily likes to sleep on weekend mornings. If you want a good brunch table Saturday or Sunday just get out there before 10 am when the only other people around are those walking their dogs, their kids or runners. But this last Saturday morning was bustling. The shelves were being restocked by employees asking if you have a water preference and people clutched odd necessities . . . it wasn't frantic but there was definitely a rush about the whole thing.
Until it came to the check out line which I ran into about half-way to the back of the store. There were two check stands open and each had a line stretching into the freezer aisles. I set my hand-held cart on the floor and responded to a couple of text messages while I waited. I watched people debate various items in the freezer case to the left and the candy and chips lined up on the wall to the right. I was fine for a while. Trying to be patient and just think about how this is part of the Irene experience. But then I felt really hot. I looked around to see if anyone else noticed me fanning my hat across my face and wiping sweat off my bald head even though no one else was hot. It was clearly me. I kicked my cart forward and tried to just wait it out. I debated calling on the mercy of the people in front of me and begging to move to the front of the line due to my special post-chemo state.
But here is the thing - I don't like admitting weakness. I wanted someone to see that I needed to help and volunteer, I didn't want to ask. So I waited in line. When there were just a couple of people ahead of me in line I squatted down on the floor and put my head down to avoid the feeling that I might pass out. I managed to put my odd collection of hurricane supplies on the conveyer belt and pay and collect my two bags without anyone asking why I was so bald and pale. I took my two bags to a bench near the exit and sat there for a few minutes to collect myself. Wanting someone to offer to help and also wanting to go unnoticed at the same time. I got the second wish and walked myself out to the curb where I hailed a cab who had to be at least a little disappointed in the address I gave him . . . . three short blocks north and one long avenue west - the meter barely had an opportunity to move beyond the base fare. I gave him a couple of extra dollars and stumbled into my building, up the elevator and into my apartment where I put the most critical items in the fridge and passed out on my bed. Chemo was catching up with me.
But Saturday wasn't all that terrible. I took naps, I watched too much news coverage of the hurricane barreling its way toward New York City, I reassured friends and family that I had everything I needed, I made my salad, I filled things with water, I moved everything away from the windows . . . by the evening I was exhausted but felt I was prepped for whatever Irene had to give since I wasn't planning on leaving my apartment for a few days anyway. At my sister's urging I gave up my comfortable bed and slept on the not so comfortable (but normally not uncomfortable) futon in my windowless alcove. My joints were sore and achy and I felt like I was getting an advanced peek into what it might feel like to be 80 but otherwise I was just tired. I put my laptop and cell phone and water bottle and flashlight all next to my bed and tried to sleep with the aid of some Advil PM.

It was a long night. Not because it was scary. Because I was uncomfortable and couldn't sleep. I tossed and turned and wondered what was happening outside. At one point I woke up thinking I had heard glass breaking. But I was in a fog of sleep and felt confused. Then I heard shouting and running in the hallway and the stairway door slamming. I was a little scared right then. I drifted in and out of sleep thinking the building was without power and thinking we were being evacuated. At some point I remember realizing the air conditioner was still on so clearly I still had power. I also remember thinking if glass had broken in my apartment then surely the wind would be louder.
And that's the odd thing about that night. I don't really remember hearing any wind. I live right on the Hudson River - about a block away actually - and my street can be a terrible wind tunnel. In the winter I refer to my corner as the secret portal to the arctic circle for the crazy arctic blast winds that blaze past. During a nor'easter it feels like the internal walls might come down as the creak and crack with the pressure. In the six years I've lived here I have seen the wind take down trees they tried to plant out front, rip down a car dealership sign off a building across the street and blow out the rotating entry to my building. The wind often creates a little whirlwind of debris next to the building's entrance. I've had winter hats blown off in the street and had to bend in half to avoid being carted off myself. What I am saying is my little corner of Manhattan is accustomed to wind gusts over 50 mph. I know what they sound like, I can almost say I know what I feel like. A year or so ago I went running one rainy Saturday and fought and fought that wind along the Hudson River and didn't realize until I was home that I had been running in a nor'easter. Like a crazy person, yes.
But Irene? I really didn't notice her. I don't know if it was because I was in the alcove or because it just skipped us somehow but either way, it was the madness of people in the building that kept waking me up, not Irene.
In the morning I was greeted by a dark sky and empty streets outside - except for one lone parking garage attendant who was on the street looking down toward the river. It was quiet and stormy but nothing like the chaos I expected. The only odd thing was that the two low buildings across the street which serve as parking garages didn't have any cars on the roof while normally they are packed. Actually, there was one 80-something Lincoln limousine on one of the roofs. The small trees in front of my building were being whipped around a bit in the wind but nothing excessive. The orange cones someone had put out across the street to warn of some hazard or another were stable.
I took the blanket off my tv. The blanket you ask? Yes, at the last minute I thought that might help if something blew in my windows. I also put a blanket over my cream couch as protection. At least I didn't do the whole window taping that I noticed others had done. I read online that it didn't do anything to help. But I think we all felt like we had to do a few nonsensical things just in case. Mine was covering my tv with a blanket for the night. I watched some hurricane coverage and then sought refuge in my cozy, comfortable bed for a few hours.
Yesterday was a long day of news and watching the sky outside my window. The wondrous, beautiful sky. One of the best things about my apartment are the south facing windows that face so much open sky. The sky was so active and beautiful with clouds moving west to east with the occasional glimpse of blue among the gray.
But more than the sky, I spent yesterday obsessed with the storm inside my body. Sunday is definitely the lowest point in the chemo cycle. My whole body ached and felt leaden. The web of skin between my thumb and index finger on each hand turned red and blotchy and felt stiff to move and a little sensitive. The blotchieness continued to spread across my palms bit by bit. My mouth lost the ability to taste and the now-familiar burned out sensation returned from last time. I was still able to eat but just didn't enjoy it. I ate my Mexican salad with lime chips but my other "meals" were two ensure shakes.

I thought bed would be a relief but despite my Advil PM, I was restless and didn't sleep well. I tossed and turned and ached and generally felt sorry for myself. And to add to my discomfort I had some fearsome abdominal pain strike in the middle of the night. It all passed slowly and painfully and left me weary and fatigued for most of today.

By around 4 pm today I finally thought maybe I should call my doctor about some of the side effects. I know, I should have thought of it earlier but I can't say I was in my normal head space. When I finally called, the doctor was gone but I spoke with the nurse practitioner who confirmed the whole burned out mouth thing is flush. The good news is they have drugs to help with that so she called in a prescription for me. And happily for me, my friend Shannon who was supposed to arrive here on Saturday but was diverted by Irene, managed to get on a plane first thing this morning and arrived this evening. We took a short outing to the pharmacy to pick up my new prescription and had dinner at the diner downstairs where I managed to eat most of a grilled cheese sandwich and most of a milkshake. I felt like I had eaten an entire Thanksgiving meal. One solid meal is just not enough. I'm really hoping this prescription kicks this nasty flush thing so I can resume eating more than nutrition shakes.

chemo #5

2011-08-18T16:48:00.000-04:00

Wow, I can't believe I let so much time slip by without an update. I think the last few weeks have been the hardest ones so far which has made it difficult to respond to much of anything that isn't absolutely necessary.
To take a step back to the end of July, as you know I had a celebratory half-way trip planned to New England. I managed to fly up to Boston but I picked up some sort of cold a day or so beforehand that ballooned into an ear infection which complicated my celebratory mood. Not to pile on or anything but I also ended up with a freakishly sized blister on the bottom of my foot for absolutely no apparent reason (was wearing normal shoes and somehow got it walking home from work). My friends put up with my whining and complaining and we managed to have a great weekend anyway. We had an excellent dinner in Boston at a place called Ten Tables and Friday morning we drove to Portland, Maine where we wandered around (I hobbled) then went sailing. It wasn't exactly the most idea weather for sailing since it was gray and cloudy and rain was threatening and 60 degrees feels a lot colder than it should when it dips that low in July but I was happy to be out of the NYC heat catching up with friends. After our chilly sailing we were off in search of a lobster dinner. And we found it at The Lobster Shack located on a bluff over the ocean with the obligatory lighthouse close by. The lobster was buttery and delicious and I was able to eat it without any trouble despite some growing mouth sores . . . one of my newer side effects. That evening we drove to Waterville Valley area in New Hampshire in the pouring rain (at least it didn't rain on us while we were sailing!) and stopped for some ice cream along the way. Ice cream was on our agenda each night and I discovered New England knows how to make excellent ice cream! The next morning we were greeted with a sunny sky and set out on our hike. I won't lie - it was a struggle for me. I had to walk more slowly and stop more often than I would ever care to admit but it still felt good to be out in nature with friends. I spent the afternoon napping while my friends went mountain biking and was awake and alert enough (after I was told to drink some gatorade) to lose a game of miniature golf and enjoy some lobster mac and cheese for dinner. Unfortuantely my ear infection worsened over night and I decided I couldn't get back on a plane again so I booked a train as we drove back to Boston and left one night early.
When I went to the doctor it was confirmed that I did indeed have an ear infection and I was promptly put on antibiotics and I spent a day worrying about whether or not I would be able to get chemo the following day. I was also worried about flying home to Salt Lake the following week with an ear infection - my primary care doctor seemed pessimistic about my bodies ability to heal on a normal time table. When I met with my oncologist on August 3rd, I was expecting to be starting on the new drug taxol and continue on a two-week cycle. Unfortunately, I learned that there was a nationwide shortage of taxol so I would be starting a different, but similar, drug called taxotere every three weeks. I was devastated. Those first four treatments were difficult and part of the difficulty was scheduling volunteers to help me out. I appreciate everyone who has helped or even just volunteered to help but it is still so hard to organize. I had the last four treatments all planned out with family or friends scheduled to stay with me during the most difficult days. I was really looking forward to those carefully planned visits and not having to organize and schedule anymore. Besides, I have been zeroed in on everything being over by mid-September. Mentally, I was locked into it. Changing to a three-week cycle means I won't be finished until the first week of October. Sure, it isn't that much longer and my doctor promised me this is a lighter drug and it would be easier and I would have more time to recover between treatments . . . but I was upset. I was also worried about my longer term plans. I know I still have surgery 4 weeks after my last treatment and 6 weeks of radiation after that. I finally asked my doctor if there was time for everything before my long-planned trip to Patagonia on December 23rd.
She said there was not.
For the first time since meeting my oncologist, I broke down in front of her. Actually, I think I have only truly cried throughout this whole long cancer process three or four times. I told her that I just couldn't handle canceling this one last thing I have been counting on for so long. I explained that I have cancelled pretty much everything in my life and coped with that as best as I could but this was the one thing I just couldn't cancel. It has been planned for almost a year. We started booking reservations in January and my flight was booked the day before the lump was found. I needed this trip mentally, emotionally, physically. I just need to go. I asked her to explain to the student who joined us for this consultation that I do not cry and she told him I am always very strong and I pulled myself together. She said she has deferred radiation for a brief period in the past and to not cancel my plans. I will discuss it with her in more detail next week now that I've had a chance to process everything. I do not believe I will be taking a significant risk by delaying radiation but will continue to research it and for the time being, plan on the trip because my mental and emotional health are just as important as my physical.
My lighter, easier chemo didn't start off so light and easy. I had a substitute nurse. She is the only nurse I have not liked. She was flustered and distracted by having multiple patients and the fact that I didn't have a port and needed an IV. She normally works on the in-patient cancer ward and is definitely out of practice with needles because she poked me no fewer than five times before giving up and asking another nurse to try. The other nurse successfully got an IV strated on the first try. The nurse also ignored me the whole time I was getting music therapy while she waited for my blood work results which means once she finally got the results she had to get the IV going and give me saline and all of that just added more and more time. Instead of having a short couple of hours I was there for five. Tying with my longest treatment. As usual, I had good company and I am now comfortable enough with music therapy I sing without caring how it sounds - even with an ear infection.
On the afternoon of Friday, August 5th, both of my brothers arrived from Chicago and DC along with my nearly 1-year old niece. I slept a lot and spent the in-between times talking with my brothers or trying to play with my busy little niece. They made me smoothies and fetched me whatever I needed and went for a walk with me. I really enjoyed their company. After they went home on Sunday I continued to sleep and expected to wake up feeling normal on Monday. I didn't. I was still more tired than I could even comprehend. I was leaving for Salt Lake the next day and was still so completely wiped out I felt leaden. It took me all day to do a little laundry (which yes, my brothers offered to do and I stubbornly refused anticipating I would feel better on Monday) and pack. I worried about getting on a plane the next day.
Tuesday morning I left my apartment for the first time since Friday evening's walk to get in a car to the airport. I was already exhausted. Every step felt exaggerated in its difficulty. I checked my bag and kept my carry-on uncharacteristically light. I crossed my fingers that this would be the flight I get upgraded. No such luck. I had an emergency exit seat that was roomy and discovered that despite my fatigue and lack of appetite I could read again. During those first four treatments I hated my lack of concentration. I couldn't read or even follow a tv show or movie that was complex in any way. But for some reason, as tired as my body felt, I was able to read my whole flight to Salt Lake. Actually, the biggest distraction was a family sitting behind me who I managed to drown out with my headphones but the kicking of my seat and the hitting (yes, hitting!) in the head was not easily ignored. It was a long flight.

I discovered that night that it wasn't just a lack of appetite I was experiencing, I could no longer taste anything. My entire mouth felt like the taste buds had been burned off. I couldn't tell the difference in how my mouth felt before or after brushing my teeth. I learned that my appetite is directly related to my ability to taste food. I could eat cream of wheat or grilled cheese but anything where I anticipated much flavor did not work. I thought a quesedilla from Cafe Rio would help. I ended up just drinking the first of many Ensure shakes my dad had stocked the fridge with. For some reason ice cream still tasted good so I made sure to have a milkshake a day along with my toast or egg or cream of wheat or grilled cheese. I think that is what I ate primarily throughout the week. I grew stronger each day so friends who saw me when I first arrived, rest assured I looked a lot better by the time I left. I spent one evening catching up with friends far later than I should have, I managed to enjoy lunch with the judge for whom I clerked and my former co-clerk and even had a private tour of a chocolate shop owned by the brother of a friend while we caught up over frozen hot chocolate (yay, it tasted good!). I spent a beautiful day with my sister and another friend at the Snowbird Cliff Spa lounging by the pool, and then enjoying the solarium, the sauna and steam room. I had developed a rash that morning and grew more and more concerned about it as the day went along so I called my doctor and she told me to take a Benadryl. This definitely accelerated my fatigue for the day but I insisted we ride the tram to the top of the mountain after lunch because I needed the view. On the way back down I utilized the only chair on the tram and struggled to keep my eyes open on the car ride back down the mountain. I took another drive up to another favorite ski resort on Saturday in a friend's convertible. We sat on a chair lift and caught up until my energy started fading - again, I blamed the Benadryl. I arrived home to a visit from two aunts and enjoyed a relaxing afternoon of conversation with bits of dozing in between. The short naps were actually enough to get me through an evening I had been looking forward to for a long time - a John Butler Trio concert at Kingsbury Hall. Kingsbury Hall is a small theater venue on the campus of the University of Utah and was the absolute perfect place for me to see a concert. We had orchestra seats almost dead center with the greatest accoustics. The music energized me. It made me feel like I was normal and not sick. I loved it.

On Sunday I spent more time with my sister and met up with another friend to watch the Tour of Utah (a bike race similar to the Tour de France) and that evening we had a bbq with my dad's extended family where I was greeted with pink pom poms waving. My uncle has been telling me his is waving his pom poms for me and I discovered these weren't just pom poms of the figurative variety. I didn't have high hopes for enjoying the actual meal but when I tested my mouth with some pita chips and hummus I discovered I could actually taste it! I ended up eating more that night than I probably ate all week put together! Including two servings of homemade vanilla ice cream at the end. I spent Monday with my sister and Tuesday it was already time to fly home.
But this time I wasn't flying alone! My parents joined me on the flight and due to a bit of good fortune and the kindness of strangers willing to swap seats, we all managed to sit together in the exit row for the flight. They were originally scheduled to be here for my treatment but since that is deferred to next week, tomorrow we are heading to DC for a couple of days to see my brother before my dad flies home. My mom is staying through next Thursday.
It was so good to go home and see family and friends. I really wanted to have time to see everyone and I desperately wanted to have a big bbq and invite everyone but I am learning to accept my own limitations and take things one step at a time. I'm also learning I am not capable of filling every minute of every day the way I normally do. I keep telling myself that I can and will do that again very soon. For now, I need to learn a little patience and how to slow down and not have everything all at once. It will all still be there when this is over.

Acupuncture, Heat Waves, Half-Way and More

2011-07-25T20:47:00.000-04:00

Not sure if anyone is reading anymore but just in case, here is the latest update:

Once again I have to start off with a thank you that feels wholly inadequate for the overwhelming amount of support I've been receiving. As with any endurance challenge (and believe me, I view chemotherapy as the ultimate in endurance challenges), more than the physical toll, it is the mental and emotional marathon that is proving to be the most taxing. But each time I start to feel weak or down I have found someone comes through in some way to pick me right back up. And really, it doesn't take much - the fact that I am still getting cards and flowers and packages in the mail is amazing but the emails, text messages and facebook notes each lift me up as well - not to mention all of the people who have been so willing to give me their time to sit with me when I'm at my worst, especially those people who braved the New York City heat wave this weekend to come to my apartment that I will admit is not convenient to anything. Thank you just doesn't seem to express my gratitude enough but at the moment that is all I can give you. Except, I guess I can also give you all a long overdue update as to how I am doing now that I am officially half-way through my treatments.

Half-way means a few things. First, it means I have four treatments behind me and my oncologist has promised me those four are the worst. Which leads to the second thing - half-way means a change in drugs. I was taking adriamycin and cytoxan together but next week I will switch to what I am told is a more mild dosage of taxol. Forgive me if I've written about this before but now that these two drugs are behind me I think I can write about the worst of it. I think. Adriamycin is sometimes referred to as the "red devil" and as I explained in prior updates it is Kool-Aid red and is administered by hand pushed syringe. From what I had read and what I was told, this is the chemo drug most people have the worst reaction to. I cannot attribute any specific side effects to it other than red urine (strange but as long as a side effect doesn't hurt, I really don't care). The cytoxan, however, has been my enemy. Knowing it is still in my system makes it difficult to even type it or think about it without a rush of this horrible cold wave I can't quite adequately describe through my sinuses and across my forehead. Cytoxan feels like I am receiving something horribly toxic into my bloodstream from the minute the IV drip starts. The last couple of treatments I was given some Tylenol before the drip started which helped. The distraction of having music therapy during the drip helped as well. But both times, the mind-numbing headache snuck up on me near the end. I also blame my post-chemo migraines on the cytoxan as well and am hoping that these will end now that I'm moving on to a new, more mild drug.

Finally, half-way means I am just a few days away from ending what could be a near record for me of longest time away from an airport. I have not flown since my last work trip in mid-April. Since work or personal travel never allows me to be grounded for more than about 4-6 weeks at a time, I'm really anxious to get out off the island of Manhattan for an extra long weekend. I'm flying to Boston Thursday morning and then heading to Maine and New Hampshire - don't ask me for the details because I have stayed out of the planning (uncharacteristic of me, I know) and simply asked for lobster, relaxation and pretty scenery. I am confident all of my requests and more will be met - especially since I was informed ice-cream is on the itinerary every night. I'm just hoping I will be up for some hiking because I'm itching for it.

Speaking of hiking, let me tell you about my second encounter with acupuncture. I realize those two things do not appear to have anything in common whatsoever but if you bear with me a bit I will make the connection. As I've indicated before, my treatments have started to follow a pattern where day 3 (day 1 being chemo) is really the roughest. Friday was day three and sure enough, despite the fact that I felt mostly fine on Thursday, I woke up extra early in the morning with a migraine. I managed to fight it off fairly early but the fatigue and nausea and on and off head aches lingered. At my prior (and first) acupcunture treatment I was advised to schedule an appointment on a day when I was experiencing side effects so the treatment would do the most good. So Friday at 2 pm was the appointed time. I managed to shower and get dressed and my afternoon volunteer hailed us a cab without much delay despite the sweltering, record-breaking heat wave that had engulfed the city. The acupuncturist office is located, inconveniently, at 20th and Broadway. An easy cab ride and, under normal circumstances, a not so difficult train ride but I was not venturing underground in my condition. Our cab ride was jerky and bouncy but we arrived a few minutes early and the office was clean and air conditioned so the wait was tolerable.

I really wanted acupuncture to work this time. I was ready to will all of the pain in my body away if all it took was for me to lie still in a quiet room for a while. Before we started I confessed my tensions to the acupuncturist and he gave me a brief chair massage to work out some of the stubborn knots in my shoulders and to help ease the tension in my head using acupressure points and massage. It helped. I then settled onto the table on my back with a pillow under my head and a bolster under my knees. The lights were very low, a fan was blowing cool air on me and a nature sound cd was playing - I had been unable to sleep since around 6 am and was hoping this would all help. After listening to my list of aches and pains, the acupuncturist put needles in my ears, my arms, my legs and foot. The one in my right arm sent a jolt of electricity shooting down my arm and the one in my left foot left me briefly with a throb of voltage which I asked about before I was left alone and was told it would settle down but it was "powerful" because it was connected to the liver. I stopped asking questions and consented to an eye pillow before I was left alone.

My first treatment I was unable to relax. I could not stop thinking about all the needles in my ears, forehead and appendages. I felt stiff and couldn't shake a headache and really was focused on the time. But this time I went into the process with a plan - visual meditation. As soon as I was left alone I drifted from one destination to the next in my head. As has been my solace before, the visuals I kept returning to were mountain tops more than relaxing beaches. I relived not just the triumphant of standing on a peak soaking in the view and feeling the cool mountain breeze, but also the challenge of getting to the top. The slow, plodding motion of sometimes having to force myself to put one more foot in front of the other to reach the top. I recalled the time my sister and I hiked Wayna Picchu to look down on the ruins of Machu Picchu. How at one point she said she couldn't continue so I finished alone but was absolutely thrilled when I saw her head appear at the top of the stairway to the first plateau. She overcame a fear of heights to get there and we will forever have the memory of that place together. I also went back to Yosemite again from last summer when during a break in the descent of one hike I was posing for a picture at the bottom of a steep and rocky incline that looked to be a short jag to the peak when my guide asked if I wanted to run up it. I grew up running up rocky mountainsides so there are few things I love more than trusting my feet and bolting up a slab of granite. I dropped my pack (and abandoned my camera) and ran after my guide. Last Friday, I recalled each step as well as the tightness in my chest as I gasped for air at the near 10,000 foot altitude mark. I thought about the physical pain that made the accomplishment that much sweeter once we finally made it to the peak (each time we thought we were there, another one appeared). But mountain tops weren't my only visual on Friday. I also returned to my last day kayaking around a tiny, untouched island in the Pacific Ocean in Panama called Coiba. I did not love kayaking. It did not seem to love me either but that last day (after 5 prior days!) I finally found my rhythm and as we returned from our last snorkel, the sun was setting to my left leaving the cliffside of the island dripping in green jungle to glow in oranges and pinks while a giant full moon rose between silhoutted island peaks to my right. I never fully drifted off to sleep but I was definitely more relaxed as I allowed my mind to replay these scenes in my head, one by one. By the end I felt relaxed and almost normal. It worked!

Unfortunately I did not time my treatment well. As most New Yorkers are aware, for reasons that are entirely lost on me, pretty much every cab in the city changes shift between 3:30 and 4:30 pm making that time frame almost impossible to ever hail a cab. I walked back out to the street at approximately 3:30 pm on Friday. The Friday of an overwhelming heatwave where the heat index soared to 115 degrees. I was not wearing contacts or glasses but was instead hiding behind sunglasses to protect my eyes against the glaring sun but that left me moving through a fuzzy world. My friend and I tried and tried to find a cab but were met with off duty signs at every turn. We finally boarded the cross-town bus on 23rd Street and deferred our cab hunt to 10th Avenue. The bus was air conditioned but the semi-crazy atmosphere of the oppressive heat seeped inside as the bus lurched and jerked along. Before too long we were deposited at 10th Avenue and greeted with gridlock in all directions. I sat at the bus stop bench and tried to return to the relaxed state I had briefly attained and ignore the sweltering chaos around me but I couldn't help but feel I was in some sort of apocalyptic movie scene where all of Manhattan was attempting to flee. I also marveled at how quickly New York City can flip and feel like the developing world with a slide of the temperature. The exhaust of the cars, the glare of the sun, the stickiness of everything combined with my nauseated state to make me feel like I was on the verge of being the crazy one to stand in the middle of the street and demand a cab because I have cancer!!! (and possibly insert a few explitives as well). Happily, my friend managed to get a cab before it came to that. Although the cab we got was not exactly a prize with no shocks or air conditioning to speak of and a driving style that focused on flooring the gas or slamming on the brakes to move just a few feet at a time. Tenth Avenue was a parking lot so he moved impatiently to the West Side Highway and tried to talk us into returning to 10th Ave when that was gridlock as well. My companion fanned me with her hat and I prayed I could make it home without throwing up. And miracle of all miracles, I survived the ride and eventually made it home - I think it took close to an hour altogether.

And that was the last time I was willing to venture out into the heat wave. For the rest of the weekend I remained holed up in my apartment under the full blast of my air conditioning which gratefully powered through. I skipped my walks and did my best to sleep and enjoy the company of my visitors. On Sunday I went to a yoga class in the gym in my building and tried to forgive myself for a disproportionate amount of time in child's pose and then returned to sleep away the rest of the day.

Today I am in the office and feeling closer to normal but still a bit run down. As I said at the beginning the mental endurance is proving to be the most difficult part. I miss my own energy. I miss feeling like myself. And recently, I've started to miss my hair. All along I have said the hair loss is the easiest part of this because there is no pain involved but as the process drags on it gets harder and harder to talk myself up into heading into the world bald. The next round of treatments will possibly cause me to lose my eyebrows and eyelashes and I'm dreading that more than I ever feared the loss of my hair. I guess the truth is that while I am half way, I cannot say that it has flown by. It has felt long and drawn out and I am just hoping the next four treatments will be the ones to fly by because I feel my courage and determination dip much more frequently as time goes on. My emotions are closer to the surface which means the goodness of others touches me more deeply but I am also more sensitive to setbacks and challenges.

3 Down, 5 to Go

2011-07-07T09:53:00.000-04:00

Once again I am taking the easy way out and re-posting the update I sent family and friends. Hoping to have more energy to blog during this cycle as I picked up yet another ridiculous pamphlet at the hospital to add to the crazy one I think will be appreciated as a blog post. Thanks for all of your encouraging comments, they help keep me positive.

Yesterday I felt like a pro at chemo. I knew what to expect and even had the opportunity in the waiting room to talk to a woman waiting for her first treatment and swap stories about running through chemo with an inspiring woman who is back for her second round of chemo with a recurrence of breast cancer (this time Stage IV but she had an amazing attitude and didn't start running until her second diagnosis!). I still feel like the youngest, healthiest person there as I have yet to meet or even see anyone who is under 40 and it can be a harsh reality to see how sick so many other patients are.

I continue to rebound well so that by the end of the second week post-chemo I feel pretty much normal. It definitely helps when friends continue to spoil me and my work colleagues continue to bolster me up when I make it into the office. I have learned that I still need more sleep than I usually allow myself and that naps and downtime are the best way to get me through the tasks and outings I prioritize. This return to normalcy makes chemo go more smoothly but causes me some anxiety leading up to treatment as I start to dread the return of queasiness, excessive fatigue, a lack of attitude and possibly migraines. It is hard to start over every two weeks but it is encouraging to know that I can work back to normal.

I was definitely carried through my last treatment with the support of my sister so I appreciate everyone who has volunteered to step up this cycle. I had a really difficult time after my sister left but managed to meet friends for brunch on the Saturday she left and the following Sunday. I also had another friend in town for most of the week who insisted on straightening up my apartment, taking me for short walks and reminding me when to eat. Some may say having a whole slew of lawyers as friends isn't ideal but when you need people to swoop in and wrest control from an overly independent type A personality, nothing is better than a lawyer, especially one with a lot of mom experience (oh, except for an actual mom and sister :)).

I didn't start running quite as early with the second round which I think worked out well. My first run after my second treatment I felt much stronger and wasn't as worn out so I managed to go further (farther? I can never tell which is appropriate). I've also continued some semblance of my normal workout routine with one or two days in the gym doing strength training and pilates and last Sunday I got very brave (with the help of a couple of friends) and went to my first yoga class in at least three years. I used to practice yoga at least once a week but once I fell out of the habit I let too many excuses get in the way to the point that I stopped entirely. I did much better than I expected and only fell on my head once (um, on my third attempt at crow pose, a very difficult arm balance which I have never successfully pulled off for more than 30 seconds at a time and I don't think that actually counts). I will definitely be prioritizing yoga classes from now on because it has always been healing and I think it is a practice I can ease into earlier than running post-treatment.

Last week was also a good work week. My primary work responsibility has been working with the summer associates by serving on our assignment committee. This is my fifth summer in this role and I have appreciated the support and encouragement I have received from not only the firm but also the summers and my other colleagues for being so comfortable with my bald head and even complimenting me on it! I usually manage to keep a scarf on for a few hours before it gets hot or itchy and then I just take it off and walk around freely and am returned with smiles and hugs. The hugs are the best. New York City isn't exactly known for its warmth and law firms even less so but I have really enjoyed the support and love and hugs I receive from so many of my colleagues - both those with whom I was previously close and those who have stepped up to a more supportive role now. It speaks to the basic good in people. Of course, all of the check-ins and support can make it difficult to actually get anything done when I'm in the office as the time just flies right by. But last week I managed to work on finalizing an objection with a junior associate and it felt really good to finish something concrete. Up until yesterday I still had myself convinced that I could fly to San Diego next week to argue the objection at the hearing. While I still believe I am capable of it, I am trying to remind myself of the best ways to expend my energy. Even if I detour home through Salt Lake (one of the enticements for making the cross-country trip), the flying alone will likely suck most of my energy, energy I would rather put into other endeavors. Plus, I think I want to save my cross-country flight energy for a trip to Salt Lake in August. I haven't booked yet and will keep those of you in Utah posted on when that happens (if it happens) because I will want to see those of you I can - a good use of energy.

This past weekend was one of my best. It started on Friday when I saw a FREE fan performance of the Tony award winning and top selling, most difficult to obtain ticket on Broadway - The Book of Mormon! A few weeks ago I tried to get lottery tickets with a friend and although neither of us won then, I received a call about a week later saying I was a winner for the fan performance! My brother had been trying to track down tickets for me and I chalk the good karmic win up to him for helping the universe grant my Make a Wish. I will preface my feelings on the show with this - it isn't for everyone. It was crude, irreverent and the language was extreme and shocking, not just for Mormons. But I was warned by many friends who had seen it previously about all of that and a few things they deemed may be most offensive. But I loved it. It was funny and at times sweet and with a few exceptions, they nailed some missionary stereotypes and I felt the overarching message was even if the baffling conception story isn't true, it gives hope and happiness to many people and makes them better people. At least that was my interpretation. Of course, I couldn't help but nitpick the flaws - placing the Missionary Training Center in Salt Lake, giving out mission callings and two year companions at the MTC. But the biggest gap was the "scary Mormon hell dream" theme. I think the writers missed what motivates Mormons - it is a carrot, not a stick. Mormons don't overachieve due to a fear of hell, they overachieve with the incentive of a better heaven. But that concept doesn't translate as easily into a funny song and dance number so I get why they resorted to fire and brimstone. Other concepts they did get right - some of the varied stereotypes of missionaries (some of whom I am pretty sure I have met!) and the cultural (but not religious) phenomenon of suppressing bad thoughts, feelings and doubts by just "turn[ing] it off", a great parody of surface level emotions commonly displayed in more casual relationships. The whole show had the feel of a dirtier rendition of a Mormon pageant (summer musicals put on at various church historical sites with no relation to beauty pageants), road shows (which I have first hand knowledge of from my lead role at 14-years old playing Suzy who falls down the food storage pantry alongside "Peter Pantry" with parodies of classic Mormon children's primary songs such as "Choose the Rice" (as opposed to "Choose the Right") which won me best actress) and finally the Young Ambassadors at BYU of whom I have no personal knowledge but my friend saw parallels. In the end, I wouldn't recommend it to everyone - no Mom, you would not enjoy it at all - but it was a really great way to kick off the long 4th of July weekend.

After the show I rushed home to grab my bag and rush back out to the bus station but was happily caught by my friend before leaving the house who encouraged me to wait for a later bus since traffic heading upstate was terrible. Recognizing that I would rather hang out at home for a couple more hours rather than spend that time sitting in traffic, I deferred my 6 pm bus ride to 8 pm which was a great decision. I made it to Rosendale, New York around 10 pm and was collected by my weekend hosts Ryan and Michelle who are determined to turn me into a bad house guest and who may regret their hospitality when I start showing up at their place every weekend. Saturday morning Michelle made some amazing pancakes and then I enjoyed an extremely hilly 2.3 mile mountain run in the neighborhood which left me panting more than usual and walking more than planned but I believe I still ran more than walked so I called it a win. I cooled down on their porch watching the chipmunks scurry about and listening to the breeze blow through the tall trees surrounding me. So relaxing. We later donned our swimming suits for an afternoon at a pool belonging to friends of my hosts' friends. I kept myself lathered in strong sunscreen and built my own shade under a giant sun hat as I'm supposed to be extra cautious under the sun's rays these days. I didn't actually swim but sitting on the steps of the pool was refreshing, as was the bucolic surroundings and the conversation. Back to the house for a nap while my gracious hosts once again let me be lazy and cooked dinner when we were joined by more friends of theirs whom I have met enough times I am now claiming them as my own friends as well. Sunday Michelle, the neighbor and I went to yoga where no one blinked at me as the bald girl since upstate has enough hippy vibe that I could just as well could be sporting the bald look for my own weirdness and not due to chemo. Some torrential rain foiled our hiking plans so we instead ventured off to Poughkeepsie for a movie and then late lunch/dinner in New Paltz where the waitress complimented me on my baldness (something I am not going to get tired of because I am too often caught off guard by it myself to be quite comfortable yet). More relaxing and too much ice cream and Monday mid-day Michelle and I set off to visit another friend's new house in the Jersey suburbs where we enjoyed snacks around the kitchen table and I tried to lure her Brooklyn raised, nature-adverse toddler onto the lawn to kick the soccer ball with me. He kept insisting on returning the ball to the familiar concrete. I wonder how long it will take before he appreciates suburban life.

I finished my 4th of July weekend with one more ice cream sundae indulgence sitting at my living room window watching the Macy's fireworks and catching up with my mom. Yes, I had corn on the cob, watermelon, pool time and country time, all enjoyed with good friends, I couldn't ask for a better weekend. Oh, sure I keep getting hung up on not being able to go on my annual river trip this summer but I compensated for that while at the mall in Poughkeepsie by purchasing new water-ready hiking shoes so I'll be ready next time I'm able to hit the white rapids.

As for yesterday's chemo session, the highlights are that it went by much faster than the last 5-hour session. Plus I learned Wednesday is a much livelier day in the infusion suite with the music therapists. I agreed to participate in a research study that involved a questionnaire which revealed to the good doctor conducting it that I feel strongly about most everything she asked and left my chemo buddy laughing much of the time - after all, who knows my strong willed personality more than the partner for whom I have worked almost exclusively for the last six years? She was great company and, as usual, kept me laughing enough that the nurse told us we were having too much fun in our little corner. As part of my music questionnaire I was asked my music background which always brings me a twinge of regret for not keeping any of it up. I revealed my dabblings in various instruments and to my complete shock I was later presented with a violin to play. Ummm, in case you aren't aware (most of you have no idea!), I "played" the violin briefly in 6th and 7th grade. I loved it and really wish I could still claim to be able to play but my skills were limited to holding it correctly (I was complimented on that) and managing to bow a nice long A on open string. I also managed to squeak out twinkle twinkle with some effort and helping with fingering. After that I strummed a guitar for a bit and found my place with some bongos while Lorraine played the wave drum as the therapist played along with us. It wasn't the greatest of music but it was a welcome distraction and I didn't get a headache with the cytoxin until there was only about 30 minutes left. A massive improvement from the last two treatments.

I spoke with my doctor about the migraines and feel a lot more empowered to address them if they come back but am hopeful I can avoid them this time around now that I have permission to caffeinate and I know what to watch for. I still anticipate I'll be sleeping a lot and appreciate the volunteers who have agreed to check up on me over the next few days.

Some more good news from the doctor is that the drug I will be on for my last four treatments will be more mild than those I've been taking which means I only have one more round with the adriomycin and cytoxin (the cytoxin is the one I blame for the headaches)!! I also have a fun long weekend planned in Maine and New Hampshire on the good weekend between treatments number 4 and 5 which will be a great way to celebrate the half-way mark. Please keep your fingers crossed for good weather and no thunderstorms the weekend of July 29th because I really want to get in a kayak and do some hiking. I don't think that is asking too much. My oncologist also reassured me that there is no way she will be adding extra treatments so I can continue to fixate on the countdown of 8 treatments spaced 2 weeks apart so I will finish up mid-September as planned. I will also be scheduled to meet with my breast surgeon sometime in August when I have only two treatments left so I can get my surgery on calendar. It will be approximately three weeks after my last treatment so my mom and sister can start scheduling their next visit for that time.

Which reminds me, if we have discussed you coming to visit for one of my treatments or any time, please let me know when you have definite dates so I can set them aside on the calendar and coordinate. The first weekend in August is reserved for my brother (possibly brothers) and I'm aiming for a SLC visit the second week in August between treatments but not booking that until I get a little closer. I also have the weekend after my last treatment in September tentatively booked so email or give me a call to sign up. I really do love having someone here during my down time even if I have to fight my hosting instinct.

Once again, thank you everyone for stepping up to help in so many ways. The cards and pictures and texts and emails are all so bolstering whether they come from far away or close. While it feels like April 28th was so far away, the time is really passing quickly and I owe so much of that to those of you who are willing to adjust your own schedules to reach out to me so often to - as my uncle repeats to me - shake your pom poms in this fight.

chemo #2, my birthday and baldness

2011-07-01T00:56:00.000-04:00

First off, and most importantly, I have to admit that I resent the fact that I am bald and yet still have to shave my legs. Also, I miss my nose hairs. They aren't all gone, just most of them and I'm left with a constantly drippy nose and a fear of dribbly hangers on mortifying me without my knowledge.

Next, I want to apologize for the long silence. Among other factors, my sister was in town, it was my birthday and chemo number two hit me harder than anticipated. And then, once I'm feeling better I start running around trying to catch up and make up for the missed down time and I keep waiting for an opportunity to write all the posts I've been dreaming up in my head. Instead, I'm going to give you the update I sent friends and family and hope I manage to get better at blogging during chemo because there are so many interesting/funny/crazy/entertaining things happening I want to capture them.

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June 24, 2011

This post is a bit overdue considering how much has happened over the past week. For starters, I am now sporting a cool new summer hairstyle - a shaved head. By Friday morning I could not touch my hair without pulling out fistfuls of it. I wore one of my new silk scarves as a head band Friday to hide what I felt was conspicuously thinner hair - although my friends all reassured me I was the only one who noticed it. But I knew it was time for the hair to go. Besides, Thursday night I had a co-worker spray paint it all pink for the Corporate Challenge 3.5 mile run through Central Park and with fragile hair it was impossible to wash the pink out entirely so my scalp looked sickly.

Before I tell more about my wacky hair night I want to brag a little about the Corporate Challenge. Two years ago it was my first race. I had decided it was time for me to become a runner and in the spring of 2009 I dedicated myself to the couch to 5k program with the annual Corporate Challenge as my first race. I was nervous to debut my new runner self at a work event but it turned out to be the most welcoming of races since it is open to walkers and runners and everyone in between (I barely acknowledged myself as someone in between). The race is run in Central Park on a Thursday evening and can generally be counted on as the most humid or rainiest or some other extreme in weather. This year it was neither - it was perfect. I may have startled more than a few co-workers and summer associates when I returned to the lobby where everyone was gathering with bright pink hair and the following taped to my back: "Outrunning Cancer" and "Suck It Chemo". But it made me feel strong and empowered. Plus, it is much easier to tell people you have cancer when you are doing something strong and a little bit crazy (bright pink hair) than it is walking into their office and quietly shutting the door behind you. I never wanted my cancer to be a secret and my kind and gracious co-workers had been considerate enough not to gossip about me so the word had not really spread. Until the Corporate Challenge when I gave it a good kick in the pants.

People were amazing. They encouraged me and asked how they could help and a couple of people even took a streak of pink in their hair for me. One co-worker quietly decided to run the race with me. She did it in a way that was low-key. As we finally reached the starting line (20 minutes after the race started to give you some idea of how crowded this thing is and we were in the middle of the pack!) she started running at my side. I warned her that I have to keep my pace slow and that I take a short 60 second walk break every mile and she said fine, that works for her. She is 18 weeks pregnant so it probably appeared to the average onlooker who wasn't reading the sign on my back that I was slowing down for her and not the other way around but I knew the truth. I run alone so often it was nice to have someone to talk to and make the whole thing go by much faster. And near the end it was great to have someone motivating me to the finish line. We finished in 40 minutes. I actually think that isn't too far off my time from the first time I ran that race two years ago. It felt amazing.

But back to my hair. Friday night I decided all the hair had to go so at the last minute I managed to gather a few of my friends for some fun with scissors and clippers. At first everyone was a bit timid fearing they were somehow going to hurt me - I asked "when was the last time a hair cut hurt you?" and before long everyone was having a great time. There was pink and blue and gold glitter spray and of course they created a beautiful mohawk for me. It was so amazing we all wished I was going out somewhere to show it off! They tried to convince me to keep it for at least one day but the memory of that morning's shower with handfuls of hair kept me determined to be rid of it all in one swoop - with plenty of photos, of course.

By the end of the night I was left with a bald head. Mostly, at least. I tried to clean the patchiness up a bit the next morning but my scalp still had gold glitter and pink dye on it and it turns out shaving one's head evenly is not as easy as it might sound.

Saturday I covered up with a bandana and a large beach hat (and lots of sunscreen on my newly bald head) and attended an event in the suburbs with our summer associates. No one batted an eye as I felt my way through this new look of mine. I don't think the summers even cared when I took the bandana off for the car ride home (turns out being bald is much cooler than covering it all up!).

My sister arrived late Saturday night and has been here with me all week. She gave me another good shave on Sunday to even things out and I finally managed to scrub out all of the hair dye. I have a lot of strange squiggles of baldness but we decided that is just where the hair has fallen out permanently on its own and not random scars I wasn't aware of. Sunday was a beautiful day we spent wandering around the city shopping and getting me a new makeover to compensate for my lack of hair followed by a little photo shoot on my roof.

And Monday was chemo, round two.

Except before chemo, my sister and I went for a 3 mile run along the river - my run. It was a beautiful morning and happily not too hot, just a bit humid (or a lot humid if you are visiting from Utah). I ran most of the time with a hat but when it got too hot I took it off and we both wondered why people were staring . . . until we remembered it can't be every day that people see a bald woman running. I guess I was a bit of a spectacle. We had breakfast at a restaurant on the pier and had a leisurely morning until I realized we were going to be late to the hospital . . . oops!

On the good news side of things my oncologist told me she believes the tumor has already shrunk some since my first treatment. She asked me how I felt about that and I was a little startled. Of course I feel great because I didn't have any expectation that I would be able to notice any shrinkage that soon. I guess those nasty chemicals are doing their job.

Unfortunately chemo did not run quite as smoothly as it did on the first round. For starters, my veins have decided to turn on me and the nurse had to dig around in two separate veins before landing on a third that worked. One of the drugs I take in particular needs a perfectly functioning vein so maybe I was just lucky on that first go that the first vein she stuck worked. I'm going to try and steer the nurse to the good one on my next round.

Another problem with this round is it took forever. I was there five hours. Of course my sister was there with me but she was just as cold and bored as I was. Cold, you ask? Yes, it is freezing in there. I wear a hoodie and jeans. I also have zero attention span for anything so I think it is about time I stop packing 15 magazines and a book along with me. I did leaf through a couple of magazines but a book was out of the question. Perhaps for my next round I will try podcasts.

One of the reasons it took so long is the second medication I receive - cytoxin - gives me a pretty severe head ache - immediately. A head ache, it turns out, that lasts multiple days and eventually manifests itself in migraine form. The nurse slowed down the IV and gave me some Tylenol which basically just prolonged and slightly dulled the pain. Next time the nurse and I agreed we need to get some pain meds in the mix with my steroids and anti-nausea pills I pop before chemo starts.

Despite the relatively minor headache at the end of chemo, I decided to reward my sister for her long suffering in the freezing room on the hard chair (while I get a cushy recliner, visitors have a hard chair and are often asked to move this way or that by the nurses and staff) so we stopped at a tea shop near the hospital where I had the most delicious ginger iced tea. Ginger is one of my new best friends these days for its anti-nausea talents.

Tuesday I was tired but it was also my birthday and since I am part 5-year old when it comes to my birthday, I had a lot of excited energy. I don't necessarily have big expectations for my birthday but I love having it acknowledged and this year it felt acknowledged in a big way. I had the usual Facebook well wishers and more cards than I remember getting in a long time, texts and emails and phone calls stretched into the next day. Plus, I got flowers. Three separate bouquets of flowers. I loved them. I still love them!
I made sure to have a slow morning and we didn't actually leave the house until close to 2 pm when I had to be back at the hospital for an injection. The nurses all wished me happy birthday and sent me on my way in under an hour. Then it was time for pedicures after a stop at a favorite cafe for a smoothie. I'm a regular there and my favorite barista was startled by my new bald look and was amazingly supportive when I confessed to the reason for my baldness. When I told her it was my birthday she gave me a free cupcake and a gift card to the cafe convincing me even more that I put this all out there, I receive more support than I ever could have imagined back in return.

After pedicures we returned to my apartment for some down time keeping our fingers crossed that the predicted thunderstorms would not manifest themselves. I had invited a few local friends to join my sister and me at Shake Shack in Madison Square Park for an extremely casual birthday dinner. By 6 pm the sky was still blue despite weather.com's dismal predictions so I told my friends dinner was a go and Erin and I hopped in a cab. The line was long and the park was crowded but I had a great crew show up and we managed to pull together enough tables and chairs for everyone to have a seat. My stomach was still pretty stable and I managed to eat an entire 'shroom burger (which is far less healthy than its vegetarian nature might suggest since it is a portobello mushroom stuffed with cheese then fried!), a few fries and about half a milk shake. But even better than the food were the friends who came. I thoroughly enjoyed sitting outside with a variety of people I have managed to collect in my life over the years and meet some of their friends too. I just wish I had had more time with each person because the night went by far too quickly.

at the end of my birthday party at Shake Shack posing with another bald head

I won't dwell too much on the happenings of Wednesday and Thursday because that is when the chemo kicked in with full force. I felt terrible. The headaches were constant and while I wasn't sure it was a migraine while I was in the midst of it, now that I am feeling normal and separate from the whole experience I am pretty sure I had a migraine for two days. I've suffered from occasional migraines since I was a kid but this headache was so different from the ones I'm used to I was slow to label it as a migraine. I was so happy to have my sister here to urge me to eat small bits and encourage me to keep drinking water. The nausea was far more powerful than last time and even overcame me once. But only once. Wednesday I made it out for a walk along the river but yesterday was a dreary day and I felt even worse than the day before so I barely did much more than sleep. Reading, watching tv and even talking on the phone took more effort than I felt capable of exerting.

the Highline

But today - hooray for today (a week ago)! I feel almost normal! My energy is significantly better and the nausea is all but gone, just some slight queasiness and absolutely no headache whatsoever! To take advantage of my new found wellness my sister and I did a little touring along the High Line and then I took a break at my office while she explored MoMA (and yes, spending a couple of hours at my office was a break). And now I'm resting up for a farewell Italian dinner with my sister before she leaves me in the morning.

Rainbow World installation at the Highline - demonstrating how great I was feeling

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Today

Thanks again for all of your continued encouragement and support. I had some more low energy moments (okay, so I slept basically all day Tuesday) but I'm now at a point where I'm all but normal and wondering why I'm not getting more done. I am pretty much my own worst critic in this thing and reading about other people going through chemo is not always helpful because I tend to focus on all the things those people are doing that I am not rather than on what I might be accomplishing that they did not. Comparisons are bad. I need to keep reminding myself my body is going to react in its own unique way. And at least that unique way means I no longer have to shave my arm pits or worry about bikini waxes this summer . . . .

hair loss and other musings

2011-06-15T17:43:00.000-04:00

Of all the things I dread about chemotherapy, being bald is the least of them. I find myself almost excited about the opportunity to do something radical I never would do if I wasn't forced into it. Am I delusional? Unprepared? A little bit crazy? Maybe, but that is how I feel and from everything I have read, other women simply do not feel this way. At least, if they do, they don't write about it. Or I haven't found those women's stories. So here is how I feel right now. While I still have a full head of hair. I promise I will admit if this all changes once I am holding a chunk of hair in my hand and looking at my bald scalp in the mirror.

Books and websites and personal anecdotes passed from friend to friend to me all warn that hair loss can be the most traumatic part of chemotherapy. In fact, one of the very first questions I am asked when I tell someone I am in chemotherapy or that I was about to start chemo is "will you lose your hair?" There is generally a head tilt and genuine sympathy in the voice when this question is posed and I chalk that up to the asker's own fears about facing baldness.

Early in the process I had several people tell me about some person or another they knew rather remotely who went through chemo and never lost their hair. These stories were meant to be encouraging but hair loss doesn't hurt physically and doesn't seem nearly as traumatic to me as puking constantly, losing finger nails or having severe diaherrea alternated with constipation (to name a few of my fears). Plus, when it dawned on me that I might lose more than just the hair on my scalp, I started looking forward to a summer without waxing or shaving.

As early as that first weekend after the big C was dropped in my lap I started buying hats and scarves and planning for baldness because to me, chemo meant losing my hair. Not just because that is the stereotype I have seen on tv but because my oncologist told me - you will lose your hair. All of it. She wrote me a prescription for a wig and handed me some ridiculous pamphlets which I will share with you when I really need something to laugh about.

My next step was to cut off my long hair. I have since received so many compliments on my new look (not all of them cancer-related, pity compliments either) that I think this is a style I may happily return to when my hair comes back. Because guess what, it always comes back. It will grow back 2-3 months after chemo - possibly gray and curly or maybe initially very fuzzy, but that is just the last remnants of the damaged cells and once those grow out, back to normal I will go.

That may be the biggest reason I just can't get worked up about hair loss. It feels like the least tragic part of the whole cancer-chemotherapy situation because 1) it isn't painful; and 2) it goes back to normal in the end.

Besides, I never did anything remotely rebellious with my hair as a teenager or in college. I had long (very long), straight hair that I tried to color once and when I thought it looked purple (it didn't), I panicked and asked my mom to help me fix it. I was not self-assured enough or insecure enough (whichever of these extremes it takes) to pull off anything remotely crazy with my hair.

And truth be told, I regret that a tiny bit.

I have now been settled into the corporate, professional world of being a lawyer in New York City for the better part of a decade and that means conservative dress, conservative hair. There are blogs out there that would advise wearing a ponytail too high in that environment is unprofessional frowned upon. So why not seize this crazy opportunity to do something different? To do something a bit wild and rebellious with my hair before I get to do my best to rock the bald look? And in the process, why not have fun with it, embrace it and laugh about it?

On the day I was originally supposed to start chemotherapy, I declared a personal Pink Day and asked all my friends and family to wear pink to support me through my first treatment. Things didn't go quite as planned that day but before we knew about the detour I had my mom spray some pink streaks in my hair and I loved it! We went to a Broadway play that evening and sometimes I would forget I had these crazy pink streaks in my hair until I looked in a mirror and then I felt amazing! It just made me feel so brave in the face of adversity, like putting warpaint on my face as I prepared for battle.

This past weekend I confessed a strange fear to a friend - what if I don't lose my hair? I have been buying hat after hat after hat and scarf upon scarf. I even have a wig (her name is Brandi and I am sure you will all be meeting her later). But what if I have made all of these plans and I am the freak who keeps all her hair? What then? I keep thinking I should just start wearing the hats and scarves to transition to wearing them without hair but mostly I've been saving them - they are my chemo headgear and I will have plenty of opportunities to wear them once I'm bald. But again, what if I keep my hair? Does that happen?

Not with the drugs I'm taking it doesn't.

Sure, there is a chance my hair could just thin out over the course of the first four treatments but the drug I will have those last 4 treatments is crazy powerful and any remnants of hair will be blasted out. Pretty much from everwhere. But I don't want patches of hair - I want all or nothing. So my resolve is to shave it off at the first sign serious clumps coming out.

Yesterday in the shower I noticed an unusual amount of pubic hairs coming out. I inspected my head but didn't notice anything unusual. I have always been a heavy shedder and, if anything, it seemed I was experiencing less hair loss rather than more.

But this morning, it was undeniable. The shedding has begun in earnest.

Each time I run my hands through my hair I am rewarded with a number of strands. No clumps, just a few strands. My doctor told me it would starting falling out two weeks after my first treatment and would all be gone within the month. I am 12 days post-treatment and right on time.

Which means, it is time to start getting a little crazy with the hair dying. Yes, photos will follow. And don't worry, if I end up having an emotional break down when I shave it all off, I promise to confess that to you. If I don't, you can all continue to scratch your heads (as I do) over how oddly detached I am from the emotional side of cancer.

Outrunning Cancer

2011-06-10T15:16:00.000-04:00

Earlier this week both my inspirational running friend, Amanda and my sister asked me if I had received this month's copy of Runner's World magazine. I had not yet checked my mail so I confessed it could be waiting there but I hadn't seen it yet. They told me this month is a special issue with the headline "Outrunning Cancer" on the cover. On Tuesday evening, after a discouraging day of napping after a short, slow, very difficult 1 mile run left me exhausted, I checked my mail and picked up my copy of the magazine. Inspirational is an understatement. The issue is full of stories of amazing athletes who did not let cancer prevent them from running and stories of how cancer and fundraising races came together. The personal stories and even the snippet quotes make me tear up. They also inspire me to run.

I'm a new runner. I ran my first race just two years ago after using a version of the Couch to 5K training plan as a guide. My sister was my inspiration, as was the urge to just spend more time being active outside a gym. My two-year history of running is a slow and bumpy one riddled with injuries and obstacles. But I have grown to love it. Running is something I was told I couldn't do because of problematic knees - I made some modifications and made it work anyway. I have asthma and terrible seasonal allergies - I worked with my pulminologist and have learned to run through it. In fact, running has strengthened my lungs and helped my asthma.

So cancer, is that going to be the thing to stop me? Not if I can help it.

I am one week post-chemo and I ran two miles this morning. That second mile sucked. But it sucked in the same way a second mile would suck if I had stopped running for a 8 weeks for no reason at all. I had to stop running during my fertility treatments which meant all the training I had been squeezing into my once chaotic schedule were all but wiped out. I had to skip the 10K I was looking to run in May for the second year in a row. And I had to give up the goal of running my first half-marathon in June. But to me, those are temporary bumps in the big picture.

My doctor told me I can run. My body reminds me to run. My friends and family encourage me to keep running. And one professor of gynecologic oncology quoted in Runner's World this month claims "Researchers have found that people who remain active during treatment - exercising when they feel good, resting when they feel bad - tolerate their treatment better than those who try to exercise every day or don't exercise at all." Judith K. Wolf, M.D., University of Texas MD Anderson Cancer Center in Houston.

Next week is the Corporate Challenge fun run/walk in Central Park which my firm runs in every year. It was my first run two years ago and I am registered to run it again next Thursday. After today's run, I know it will be hard to push myself more than 3 miles but I also know that breaking it all into 1/2 mile segments with walk breaks and a slower pace makes it more manageable. And ultimately, I think the timing couldn't be better. I will be 13 days post-chemo treatment and I am optimistic I will be feeling even better than I do today.

As for other running goals, I have some.

I am co-captain of a relay team in September - the Red Rock Relay to Zion. My sister has volunteered to be my shadow/back-up runner. If I can run, she will pace me. If I can't run, she will run for me. If all goes as planned (and I recognize that is a big if), the race will fall the weekend before my last chemo treatment.

About a week later, the Susan G. Komen Race for the Cure comes to New York City. I have latched onto the pink cause with all my might these last few weeks and have devoured the unbelievably useful information contained on the Susan Komen website. Other resources have been informative and helpful but this one has been invaluable. I want to form a team and throw myself into fundraising for that particular race and will likely bring that up here some more once I get more organized. The Susan G. Komen Race for the Cure has raised $1.4 billion since it started in 1983 and let me tell you, a stage II breast cancer diagnosis in 1983 was a completely different animal than it is today thanks to all the research that has taken place since then.

In terms of an update on how I am doing 1 week after my first chemo treatment - I'm doing better than expected. Those first few days were challenging as I worried about all the terrible things that were going to happen to my body that never actually materialized. Last night I asked a friend who works in oncology if it is true that treatments can just keep getting worse and he told me to just stay positive and not worry about it. If I am doing well then I just need to focus on staying in tune with what is happening to my body and stop fearing the worse. He was so right. He gave me permission to stop preparing for misery and enjoy where I am at.

And where I am at is a pretty good place. I have stopped using an alarm clock and learned that my body needs 9 hours of sleep a night instead of my usual 7. And some days - like Tuesday - I will be struck with heavy fatigue and malaise and I need to just give myself a break and sleep if that is what I need. I was completely disinterested in food for several days but my appetite has returned to normal and I haven't experienced any noticable shift in taste or smell. My skin looks the same as always and I am wearing extra sunscreen daily but haven't noticed anything different.

Every morning as I shampoo my hair I wonder how many more days I will have that pleasure. If my doctor's calculations are correct, I get another week of hair before it starts falling out. I'm shaving it all off the first time I pull a clump out. No reason to let it shed and fall out in clumps for weeks like I'm molting. Besides, I'm more afraid of the day my eyelashes fall out than the hair on my head. Also, I have this deep fear that I will be bald, with no eyelashes or eyebrows but still need to wax my upper lip . . . how awful would that be?

Mostly I'm trying not to worry, focus on the positive and make fun plans with friends and family to enjoy my new found free time. My spirits are high and I owe that in a very diret way to the phenomenal support of family, friends and strangers on the internet :)

2011-06-05T20:35:00.000-04:00

I cried today. In public.

And not for the reason you might think. Well fine, yes, it was related to cancer and chemo but ultimately it was someone's reaction that made me cry.

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I am now finishing up my second post-chemo day and I will tell you the hardest thing I have encountered so far is my own psyche. There is something incredibly unnerving about waiting for bad stuff to happen to you. I've read and re-read about all the possible side effects of chemotherapy and what to watch for and what to monitor and what are red-flag-call-the-doctor symptoms. So I feel like I am trapped in my head checking on each and every twinge questioning what might be happening.

Yesterday I woke up feeling fine - normal, even. I had an appointment at the hospital with the doctor on call to get an injection at 10 am and I decided I had plenty of time before that for a run. I put on my favorite pink tank top and black shorts, picked some good music and strapped my iphone to my arm and my knee brace to my knee and ran out the door. I didn't run hard or fast and by the time I was at my usual path on the river my chest was already tight. My spring allergies hit late this year so I couldn't be sure if this was pollen-induced asthma or chemo-related shortness of breath. So I took a couple of puffs from my inhaler I stuck in my shorts at the last minute (the inhaler I often forget, neglect or just purposefully leave behind) and I kept going. I didn't run far and I didn't run fast but I felt like I was doing something amazing by running the day after my first chemo treatment, even if it was only 1.3 miles. I walked up the long hill to the hospital, stopping at Duane Reade to buy a Gatorade first. In the now familiar hospital lobby I handed the pager number of the on-call oncologist over to the security guard as directed and waited. I finished my Gatorade and put on the light long-sleeve shirt I had tied to my waist and wondered why there were birds flitting around inside.

The oncologist appeared and introduced herself to me and greeted another patient of hers waiting with me. She apologized for the wait and asked us to follow her back up to the 11th floor infusion room, which was empty on a Saturday. We each took a seat while she went off to collect our injections and the man in the next chair made small talk with me which primarily consisted of him telling me I shouldn't be running. I told him my doctor okayed it as long as I didn't over do it but he figured his mistakes should be a warning to me and told me about how he was off loading boats or something or other after his first treatment and ended up in the hospital for four days. I thanked him for the advice and tried to steer the conversation in another direction but was saved by the doctor who returned with my injection first.

Just like the fertility injections, this shot was stuck in my belly. Quick and painless. I told the doctor I had read/heard that the side-effects can come on stronger after the injection and she confirmed but also indicated, once again, it is a different experience for everyone.

So I went home and did a little more light exercise/stretching at my gym before showering and waiting for the dreaded side effects.

I drank lots of water and questioned whether I was hungry or queasy or nauseous or bored. I believe I was mostly bored. And scared. I wanted to sleep and I wanted to do something and nothing all at once. I felt restless and listless at the same time. I wanted someone to call or come over except I didn't want to see or talk to anyone.

By mid-afternoon I realized what sounded best of all was some lo-mein noodles with steamed vegetables so I ordered them. I didn't eat very much but at least I was eating. Although I was afraid to eat because I was (am) afraid to throw up. I refrained from my usual spicy noodles and got the plain ones.

By the end of the day I was exhausted from the sheer focus of paying attention to my body. My legs ached (they seem to do that at the end of the day now for no reason) and the glands in my neck feel tender and possibly swollen and I think I might always have a headache on a permanent basis but nothing unmanageable. No fever - I checked incessantly throughout the day since that is the biggest red flag.

I went to bed at 10:30 pm and I didn't get up until 11 am. And I was still tired.

That isn't like me. So I worried and waited for the dreaded second day after chemo parade of horribles to unfold.

I didn't want to get sucked into TV so I sat on my favorite orange egg chair with my feet propped on a blue stool and read. I played my Sunday morning classical playlist and drank glass after glass of water. First I continued reading "The Emperor of All Maladies" until my brain could no longer focus. Around noon I decided I had to shower and get dressed whether I left the house or not. Afterwards I even convinced myself to eat some more noodles. I returned to my chair and picked up a lighter book - "Beauty Pearls for Chemo Girls" by Marybeth Maida and Debbie Kiederer. It was great, to a point. The book is basically all about how to combat some of the uglier side effects of chemo. There are great tips and messages but after a while I felt like I was waiting for my skin to turn brittle, dry and sallow, for my hair, eye lashes and eye brows to fall off and my eyes may even turn yellow! To combat all of this I would need to throw out every beauty product I own and start from scratch and from here on out the only fabric I should allow to touch my skin should be cotton.

Time to put away the books and step out the front door. I feel fine.

One of the tips for managing pain and stress and fatigue in that book and on many websites and other books I have read and even from my own oncologist is massage. I was gifted some massage gift certificates to a fancy salon I have never been to which is closer to my office than my house. I considered calling there but it seemed like more effort and less likely they would have an immediate opening. Instead I called a spa I have been going to for years. A small, new agey type place I have loved. Just as I had hoped, they had an opening for 5:30 pm.

I put makeup on and left the house early so I could go for a walk in the unseasonably cool afternoon air. A block or two from my place my sister called so I walked and talked to her for a while and then sat in Central Park for a bit waiting for my appointment. It felt good to be outside but the crowds of tourists and other oblivious pedestrians outside made me feel fragile. Waiting for chemo side effects was reeking more havoc on my psyche than actually feeling sick.

Once I was buzzed into the spa and was walking up the steps to reception, I felt tension sliding away. The familiar but unidentifiable to me scent of the spa put me more at ease and made me grateful to be off the chaotic streets of Manhattan. I was disappointed to not be offered the berry tea I have grown to love but happy to be quickly whisked up to the massage room before I even had a chance to sit down.

As we walked in the room she asked if I had any health issues she should be aware of. I already had this part planned out in my head. After all, I told my stylist when she cut my hair off, I told the girl at the nail salon so I could buy my own manicure set, massage is touted as a complimentary treatment to chemotherapy so it would likewise be no big deal to tell this woman.

I was wrong.

As soon as I told her I was undergoing chemotherapy she told me she could not help me. I told her I have spoken with my oncologist about massage and she said it is fine - encouraged, even! This woman spoke to me like I was a child (although I am sure she is younger than I am) and explained that when she massages, she is moving the cells around and if she massages me while I'm getting chemotherapy, she would spread my cancer. I tried to dissuade her of this incredible notion by explaining to her that I am comfortable with the fact that my doctor and all my research has indicated massage is safe and encouraged but if she is not comfortable with it that is fine. Again, she went into her ridiculous speech about spreading my cancer.

We walked back into the hall and at the stairway I burst into tears. I tried to shoo her away as I explained how incredibly stressful this whole experience has been and that all I wanted was a way to relax. Then she told me "do not feel this way" and I was done. I told her I needed to be alone to compose myself and I walked back into the massage room and took large, deep breaths. I pulled my sunglasses out and tried to piece myself together enough to get out of there.

I expected her to still be waiting in the hall but she was gone. I walked down one flight of stairs to the reception area and she had pulled the guy from the front desk into the back hall where they were clearly discussing the whole ordeal. I waved goodbye and incredibly, I think I even said thank you.

I raced down the last flight of stairs to the street and called my sister in complete meltdown mode. I was devastated.

When the results of my breast biopsy came back positive and a doctor told me over the phone "It's cancer." I did not cry.

When I had to call my mother, my father, my siblings and friends I love like family and repeat over and over "I have breast cancer." I did not cry.

When I walked into the office of my mentor to tell her "I have cancer." I did not cry.

When the oncologist told me about that damn spot on my sternum - I did not cry.

Throughout this entire journey from diagnosis to the start of treatment I have felt incredibly lucky to be surrounded by supportive family and friends and work colleagues. People who understand and if they don't, they fake understanding. In almost all of the personal cancer stories I have been devouring these last few weeks I have been shocked by how many people have to wade through rude doctors, nurses, receptionists, obnoxious friends, etc. I have had none of that.

Until today.

I vented with my sister and walked to the river where I found an empty bench to sit on and watch the sun set over the water. I breathed in the cool air and we laughed at this woman's ignorance - and the fact that she missed out on my business. We even quoted the whole "big mistake - HUGE mistake!" line from Pretty Woman. Venting to my sister put my soul to rest and looking at the water smoothed over the other rough edges.

I hung up feeling better and finished the healing with Mumford & Sons playing in my ears as I flipped through a magazine.

I decided, for me, no more solitary weekends. I may not be debilitated by sickness at the moment but from here on out, I need people around me to save me from what is happening inside my head.

First Day of Chemo

2011-06-04T00:18:00.000-04:00

the t-shirt I chose to wear for my afternoon walk, a gift from a friend

Oh the nerves I had this morning. I tried to eat but the only thing I could convince myself to ingest before leaving the house at 8:30 am was a homemade iced soy chai latte. Oatmeal, cereal, even toast just seemed too much.

Chemo was not my fear, of course, it was the biopsy results I was dreading/anticipating.

My friend JooYun signed up as volunteer for day one and as our two other close friends commented - she is exactly the friend they would want with them in this situation. Calm, reassuring and completely in control of her emotions - good news or bad, she is a good friend to have at your side. I realized as I approached the hospital entrance that she was walking straight toward me. A good omen.

Once I signed in at the now familiar reception desk in the oncology ward and said good morning to one of the now familiar faces, I didn't sit very long before I was called back to get my vital signs checked. One of the nurses there attended to others as I dutifully waited my turn at the scale, weighed myself and took an empty seat. The man next to me snapped a photo of all his final blood pressure, heart rate and temperature as it beeped on the machine he was still attached to. I commented that was a good idea and he grunted. Something in me has been prompting me to keep track of these numbers myself and next time, I won't leave my phone in my purse with my friend. I'll bring it with me and snap a photo for later recording. As the nurse turned her attention to me she asked my weight as she strapped the blood pressure cuff on my arm and stuck a thermometer under my tongue and told me not to lie. After consulting my chart she turned back to scold me about the marked fluctuation. I reminded her this is normal for me and that a lot of it was influenced by my fertility treatments and now that I'm back on my period my temporary reprise from bloat is gone. She eyed me suspiciously and made her notes before turning to the sick people in the room - the elderly woman helped into a chair by her two visibly worried daughters, the extremely thin woman in a coat next to me with one of those scarves with suspiciously fake-looking bangs poking out the front like the ones in the hideous "Chemo-Savvy" pamphlet I was given a few weeks ago.

My turmoil was in the emotional category shoved down out of view as I cheerily thanked the nurse and took my chart to pay my $20 copay to billing with another smile. I then collected Joo and went to Exam Room 2 to wait for the news. We waited and waited and waited.

And waited.

We took turns in the bathroom without a sink attached to the room and I showed Joo where the secret garbage can is next to the sink by the exam table and then we waited some more.

Close to 10 I was told my doctor had an emergency and was on her way. Then I was told again she is close and they were going to have me wait in the infusion room . . . I tried not to read into the fact I was being escorted toward chemotherapy.

I met Marie Anne a nurse I presume I will become more acquainted with as the summer progresses. She was sweet and efficient and honest. I also met Jeanne (sp?) as she sang her way to my side brightening everyone around her with her snappy wit, quick smile and flaming red hair. I hope I see more of her.

Marie Anne hemmed and hawed over whether to get me set up with saline before the doctor arrived and while she was asking me more intake questions my oncologist rushed in apologizing for her delay - her father is in the hospital. Of course I understand. More than this, I understand the fear of having a father in peril.

Right off she told me the biopsy was negative but before I finished my initial cheer she said she is caution about this. When the radiologist performed the biopsy he accurately extracted cells from the "bone lesion" as it is termed in my chart and when he looked at the smear before sending it off to pathology he noted abnormal cells and discussed this with my doctor. She did not expect a negative result so she suggested rather than try another biopsy (thank you very much), she would talk with the pathologist personally to better understand the report and in the mean time, we will proceed with chemotherapy and just add radiation at the end as a precaution. For now - I am back to Stage II breast cancer, as one friend put it in a text this morning "Isn't it funny when the best news ever is that you have stage II breast cancer? Hallelujah!"

Hallelujah is right. Earlier this week I was introduced to the term "storming heaven" and let me tell you the advantage to amassing an eclectic, diverse group of friends - my posse has been storming heaven in multiple ways with prayers to Mormon, Catholic, Sikh, Hindu, Buddhist, Christian, Jewish and non-denominational deities as well as pleading with the great unknown forces of the universe. Believer or non, my family and friends have focused their influence on me and whether that force turned abnormal, cancerous looking cells benign, I will never know (and to be quite honest, if those cells were malignant I would never blame it on a lack of prayers) but once again, the force of the effort has raised me up.

That fear behind me, I was ready to move forward with chemotherapy. I was given a small handful of pills explained as anti-nausea and steroids I swallowed all at once. Marie Anne lecture me about drinking lots of water to help my veins and she didn't seem to believe me when I reassured her I am a dedicated water drinker. If you don't drink lots of water, let me tell you what will convince you - kidney stones. Oh, and headaches at the smallest hint of dehydration. I carry a water bottle with me almost always. I pee every hour, sometimes more. I like water. If you really want me to drink more of it, I will but that means I need to be practically tied to a bathroom because my kidneys work double-time.

The saline-solution was cold going into the IV and I realized next time I should put my hoodie on before the IV makes it impossible. I think it was close to 11 by the time all the forms had been signed and I was ready for my first real batch of cancer killing chemicals.

The first drug in today's 2-drug cocktail is called Adriamycin and it is described aptly as "an anti-cancer chemotherapy drug." Just what I need, right? In contrast to the IV bag of saline I had been receiving for the first 30 minutes or so, the Adriamycin was given to me by Marie Anne via syringe placed into my vein and diluted with the saline solution still running into the same line. The most startling thing about Adriamycin is that it is bright Kool-Aid red. It looks menacing. The nurse warned me that it will look exactly like that coming out through my urine so I shouldn't be startled (I was still startled).

Adriamycin - my first taste of chemo

I received two fat syringes of slowly injected cherry Kool-Aid and was left to absorb it all for a bit - and to take one of my frequent pee breaks (did I not warn her I drink a lot of water and now she was injecting all kinds of fluids!). Luckily I learned right away from Jeanne that my IV cart has a name - George - and that he is polite and while he does follow me to the restroom, he averts his eyes. Oh, but yes, my urine was red right away, if you must know (and sorry if you don't want to know, but you really should realize by now I'm kind of into the details).

The parade of horribles caused by Adriamycin include: pain at the site where the med is given, nausea or vomiting, low blood counts, mouth sores, hair loss, watery eyes, discoloration in urine (check!), darkening of nail beds and fertility problems. Happily I do not need to expect all of these side effects and 12 hours after the fact, I can't say anything has concretely manifested itself other than the red urine.

Next up - cyclophosphamide aka Cytoxan, classified as an "alkylating agent" this drug is also anti-cancer - yay! An interesting historical factoid about alkylating agent, did you know mustard gas derivatives fall into this same category? A devastating attack on American ships during World War II floating in a harbor just outside Bari in southern Italy (a city my brother lived in where my sister and I visited him 11 summers ago, coincidentally) on December 2, 1943 resulted in the explosion of seventy tons of mustard gas stockpiled on one of the ships. The German raid was far more terrifying and successful than anticipated and nearly a thousand men and women died of complications over the next months. However, the incident resulted in the discovery that the gas specifically targeted bone marrow cells, a key scientific advancement in the early wild frontiers of chemotherapy discovery.

Chemotherapy drugs work (hopefully!) because they kill cells that are rapidly dividing. The normal cells will grow back and healthy but in the meantime, side effects occur (blood cells, cells in the mouth, stomach and bowel and hair follicles are similarly fast growing cells that are impacted the most). The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division - the faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink - or induce cell suicide.

Marie Anne warned me that this particular drug could cause an immediate nasal congestion or head ache. I told her everything gives me a head ache so that is the most likely outcome. Sure enough, not long after the IV was started, a sinus-like, mild head ache moved across my forehead with stuffiness to follow. The Cytoxan was briefly halted so it would go away. It stayed with me but we eventually restarted anyway since it had mostly subsided.

Aside from the technical portion and the anxiety, I have to say it was a positive experience. I had a nice big corner recliner next to the window in the infusion room. The woman in the chair closest to me offered encouraging sentiments, especially after I indicated this was my first time. I tried to be very patient when Quincy the therapy dog spent a significant amount of time with her as his owner chatted away. I had to ask not to be ignored and was granted some lap time with the small Yorkie-Poo with his own calling card. My brief time with him only intensified my growing desire to have my own dog. A hole in my life I endure in New York but which has been augmented by my diagnosis.

meeting Quincy, the therapy dog

Later, while Joo was searching for some lunch for us, a reflexologist offered me a hand massage. I agreed to it and listened to her story. Jeanne told me I will do great bald because I have a beautiful face but when I thanked her she quickly told me she would not be saying it again and not to let it go to my head. I managed to eat half a tuna sandwich and drank my blessedly hot chai latte.

And after many hours at the hospital, close to 2 pm, I walked into the startlingly hot and bright sunshine of mid-day. I hugged Joo a couple of times and thanked her profusely and walked home wondering when I would start feeling rotten.

I made some phone calls, returned emails and texts and tried to focus on something, anything. Failing, I listened to Yo Yo Ma play Bach's unaccompanied cello suites and let the music bring me the comfort of Sundays at home, reminding me, as it always does of my cellist father.

trying to relax - I look tired but couldn't sleep

Soon, a distraction arrived at my front door. My friend Katharine came over to keep me company, talk, sit, or leave me alone - whatever I chose. I chose chatting and then a walk - with food! We walked along my running route on the Hudson River and had an early dinner at a cafe on the pier I've wanted to try for a couple of years. It was surreal and perfect all at once. I managed to eat half a veggie burger and most of my fries and all of my blueberry lemonade. We walked back to my place and she gifted me a number of fabulous books and left me to them as she made her way home to her family confirming her offer to take care of my insurance claims. An offer even stubborn me cannot refuse.

dinner at the pier - highlight!

Around 9:30 I felt a twinge of queasiness and real or imagined I decided to break out the pills because that was what my doctor and nurse recommended. I am tired now. Overly tired. But I could not go to bed without capturing the day while it was fresh, while I am still well. I cannot say good night without thanking each of you one last time for "storming heaven" for me in whatever way works for you. As one who struggles with formal personal prayer, I am humbled by the ready gift of it from others.

beautiful city sunset out my window

waiting

2011-06-02T21:34:00.000-04:00

My jumbled up, unedited thoughts this evening at the end of a long week of waiting on biopsy results written as an update to friends and family and copied directly here.

This last week has been a long one. It is jarring to switch from a week filled with daily tests and scans to one of simply waiting. But once again I must thank each of you for enduring the wait with me. No, it isn't quite over yet. I do not know the results of the bone biopsy since, as expected, I will have to wait for the appointment with my oncologist tomorrow. However, I have endured this week and made peace with myself in terms of being ready for the results with the help of this community standing behind me, beside me and with me as I absorb the possibilities and contemplate my choices. Whether you are one who has reached out by text, email, phone call or card or simply by carrying me in your heart, I am buoyed by you. A lesson I feel I will learn over and over as you help me fight my cancer, I believe, is that a shared burden is a lighter burden. . . sometimes even to the point of forgetting it is there.

After the initial shock of last week's news that my relatively mild initial diagnosis of stage II breast cancer could be upgraded to the alarming diagnosis of stage IV metastatic breast cancer, I forced myself to push reactionary thoughts of death and dying to the back of my mind. I was assisted in this effort initially by a visit from my brother and his 8-month old daughter, as I mentioned in my last update. Other distractions presented themselves via dinner invitations, phone calls, shared meals and another Broadway show.

But for me, nothing quells fear like knowledge. In between welcome distractions, I researched and studied and asked questions of people with experience. I now have a better understanding of metastatic cancer and treatment options. I understand that metastatic cancer is a chronic condition that can be treated and attended to but not necessarily cured (thus, the minuscule 5% chance of it being eradicated by chemotherapy). I have questions ready for my oncologist and I feel more prepared to make a decision on how I want to proceed.

That being said, last night the stress of the wait manifested itself through excessive fatigue and headache. I went to bed without setting an alarm and endured a restless night and could not bring myself to leave the confinement of my home. I needed restoration, the kind of restoration that, for me, comes from solitude. I spent the morning continuing to devour the book "The Emperor of All Maladies" by Siddhartha Mukherjee, a biography of cancer. Reading the books helps me feel like I am somehow helping myself - again, research and knowledge, regardless of the actual information gained, is a comfort. The oppressive humidity that has hung over Manhattan these last few days was blown away so I ventured out for a mid-day 2-mile run along the Hudson River with the wind at my back on my way out making me feeling fast and then at my head on my return leaving me somewhat discouraged. The run, however, helped solidify some decisions that had been percolating.

A friend had called just before I left and as I explained to her how I questioned whether I should dive in and proceed tomorrow with chemotherapy or if the biopsy is positive, should I be more deliberate and seek a second opinion. Second opinions are supposed to be reassuring. They are used to confirm a course of action or to offer alternative views and possibly, in my case, a third or fourth option for treatment than the two I am currently facing. But the small steps I have made in that direction over the last few days have struck me in the gut. I have an oncologist I trust. She spends a significant amount of time explaining everything to me. She has emphasized that she is the person I should call with my questions (and I have) and she is accessible. She levels with me. She gives me facts, explains the gray areas and levels with me when I ask a question that is outside her understanding. She follows up. Not to mention her excellent credentials. All of that matters.

But that isn't why I do not want to take the time to seek a second opinion. What gives rise to waves of panic is the idea of further delay. Since April 18th, the day my lump was first detected, I have had this sense of urgency propelling me forward from one appointment to the next. And I have been incredibly fortunate in how quickly doors have opened for me, appointments made, results and consultations given. I have read accounts online of this process stretching out for months for others similarly situated. At each step in this process I have felt confident in those doctors, nurses, techs and assistants who I have encountered. I still feel that way.

Throughout my life I have made decisions through research, careful analysis of facts, meditation and in the end an indescribable propulsion toward an answer that cannot necessarily be called a decision but is more action. These decisions can appear impulsive to an outside view and may not always be the "right" choice, but the action itself is always a relief. I do not fair well during interim decision periods where "wait and see" is the only course of action. Therefore, unless I am kicked in an entirely different direction by my subconscious in the next 12 hours (a phenomenon that has happened), I have decided to take action regardless of the biopsy results and move forward with aggressive treatment as soon as possible - hopefully starting chemotherapy tomorrow.

Lest you believe my own impatient nature is causing me to cast reason aside, the other outstanding factor tipping the balance is my emotional state. As many have noted, I have managed to stay positive and upbeat throughout this process. This is not a front. I have faked positivity in the face of crushing challenges in the past, but not now. Right now I am afraid of the worst case scenario coming to life but similarly to that long week endured waiting for the results of my breast biopsy a month ago, I feel powerful. I have endured hard things. I have conquered difficulties. I am inspired by others who have done the same and I feel as difficult as the months ahead may be, I am more ready now than I have ever been. I have family and friends who are praying for me, thinking about me, reaching out to me - ready to help carry whatever piece of this burden I am willing to give away.

But for me, if I have nothing to direct this fight and grit and attitude towards, I will feel defeated. Every time I think of choosing the second option given by my oncologist - taking Tamoxifin to control or shrink any metastatic growth - I feel my resolve slip. It feels passive and slightly defeatist. At my age and with all the armor I have gathered to endure the coming battles, I cannot fathom reducing the fight to a pill and giving up even the slim 5% odds of success. Depression would surely follow.

I will send an update as soon as possible after I get my biopsy results. Thanks again for your continued support and for reading my somewhat jumbled thought process this evening.

out out damn spot

2011-05-28T23:20:00.000-04:00

Thursday was hard. Possibly the hardest day I've endured since the start of this journey that has both dragged and flown by simultaneously. There was comfort food and of course pink pinging me all day by text, by email, by facebook and loving phone calls. Yesterday could have been so much worse without the groundswell of support.

My mom and I went to see Billy Elliot, a Broadway show I've been wanting to see for a while. It was perfect. Lively and upbeat with a heartwarming story of overcoming hardship. Full of hope. With tap dancing, sparkle and a stunning male ballet dancer who was riveting for the one scene he was onstage.

I fell asleep easily but slept fitfully until about 3:30 am. After an hour of spinning thoughts I caved and retrieved my computer to make myself useful and distract from the loop in my head. By 6 my mom was up as well. We didn't need to be at the hospital until 8 am but we wanted to be on time. And ready. By 7 we were ready to walk out the door and had to sit around pretending to be interested in what was on the Today Show while we waited. We left by 7:30 and I turned back at the elevator for an umbrella and a book and something else that seemed important at the time.

The hospital is one long cross-town block and a short uptown block away. We walked slowly in silence each carrying the weight of the prior day's news. I signed in at the reception desk for "Ambulatory Surgery" which I presumed meant outpatient surgery and sat staring ahead until I couldn't take the overly loud voice of the man sitting to my right giving his daughter/friend/sister a pep talk for an audition or job interview - it wasn't clear which but when he told her it was okay to make up an anecdote I couldn't take it anymore and I asked my mom to listen for my name and put my headphones on. Reading was out of the question.

After ten or fifteen minutes my name was called and I signed several forms and returned to my seat. Another five to ten minutes went by and I looked through the magazine my mom was flipping through and was grateful the loud guy had either run out of things to say or possibly realized a surgical waiting room might not be the place for loud lectures. My name was called again and my mom was told to wait while I was led to the back and handed off to a nurse who asked me lots of questions and handed me a gown to change into. I asked if I would be able to see my mom and she said they would call her when it was over. This panicked me a little. I needed her to wait with me. I needed her to hear what the doctor was going to do to me.

I texted her as I was walked by an orderly (or someone I presume was an orderly, I really don't know hospital titles very well yet) to a locker where I was to leave all my things. When I came out in the disposable purple gown with ready-made holes for strategic access I asked if I could see my mom again and this time I was told they would call her back.

The intake/recovery area was a long room with very few beds and lots of recliners on wheels with those curtains that can be pulled for semi-privacy. I was instructed to wait on one of the very few beds in the room while I watched many other people pointed to chairs to wait in their disposable gowns. I followed the instructions in the changing room and successfully put mine on but I saw one woman come out with an arm stuck through one of the holes made for IVs or catheters or something and the sleeve was pointing up out of her shoulder. I giggled a little knowing that could have easily been me.

Soon my mom walked in and sat in the chair to keep me company. But I was asleep before too long. After a short nap and about two hours of waiting I flagged someone down to see if I had been forgotten. We were told there had been an emergency downstairs so we continued to wait. By 10:30 or so I was collected by a large man named Andre who maneuvered me through the maze of hallways filled with sharp corners, abandoned equipment and people to the elevator and then down to the now familiar Nuclear Medicine floor. I was parked in another curtained off cubby and someone brought my mom a chair for another wait.

Before long we met Maria, the RN who assisted in my procedure, and all of our impatience and tension disappeared as she made small talk and joked around with us. She was upbeat and funny and exactly what we both needed after a tense morning of waiting. We went through more questions and forms and she inserted my IV and introduced me to the PA and reassured me that she would be generous with the medication. She also explained (for the first time) that although I would not be out, she would be giving me a combination of Valium and a morphine-like pain killer. She also said she hates assisting in these procedures because they look so painful . . . I told her about my breast biopsy and how nervous I was about more pain. Again, she reassured me she would be free-flowing with my drug cocktail.

The PA explained the entire procedure and then I met the radiologist who explained it all again and listened to my fear of pain. Both were reassuring. I also appreciated it when the radiologist explained he had studied my scans and told me in detail how he would perform the biopsy and how careful he would be about all the vital organs the sternum protects. He also said he wouldn't do the biopsy if he didn't think he could do it and while this one was difficult, he knew the angle he needed to use to get at it. I thanked him for squeezing me into his schedule on short notice.

I was taken into the procedure room around 11:15 - I think. I remember squinting (no contacts or glasses) at the clock on the wall shortly before I was no longer allowed to move. I was moved to the table of a donut-shaped scanner (CT or MRI, I don't know the difference) and the front of my gown, which was velcroed to my shoulders, was pulled down and I was given a warm blanket to compensate for the chill of the room. Maria placed heart monitors all over me and put the blood pressure cuff on my ankle while the PA put a plastic grid on my chest which is how they would locate that damn spot in my sternum. My arms were akimbo above my head where they would remain throughout the procedure.

I was soon left alone in the room while the scanner hummed into action and the table I was lying on slid further under the donut. The tech told me to breathe out, breathe in and hold my breath several times and at one point Maria came back into the room as everyone told me "DON'T MOVE!!!" Maria put an oxygen tube under my nose and left me to more scans. The oxygen in my nose made it more difficult to hold my breath.

The table slid out of the machine and I was again told multiple times "DON'T MOVE!" as everyone swarmed around me into action. It was soon discovered that this paper gown with all of the strategic access holes was unacceptable and the PA demanded scissors and it was cut off me and someone made sure to reassure me that I would be given another gown. I tried to hold still as much as possible as the PA and radiologist leaned over me and shouted the coordinates on the grid on my chest which marked the spot. The most painful part of the entire procedure was when someone pushed the marker really hard through the grid and onto my skin.

Then Maria said she was giving me the sedative and everything got warm. She patted my arm and held my hand above my head and urged me to relax as the doctor scrubbed and scrubbed my sternum and then gave me a couple of local anesthetic shots. I felt the prick and the doctor said I shouldn't feel anything more. I was awake throughout the rest but really didn't care what was going on - I guess that is what Valium is for. The doctor would periodically press down on my chest over and over and all I remember is thinking - that will be an ugly bruise. But I really didn't care.

It was over before too long and I was told I could relax and put my arms down as Maria took the heart monitors and blood pressure cuff off of me and then helped me into a fresh gown and I slid back to my original portable bed and wheeled back out to the reception to see my mom. I drifted in and out of sleep while she waited some more.

Shortly before one I was taken back to the recovery room of Ambulatory Surgery and a nurse took my vital signs again, moved my bed into an upright position and gave me juice, cookies and graham crackers. I was tired and a little loopy but felt no pain. After I finished my snack, the nurse helped me out of bed to see if I could walk. It was more difficult than I anticipated but I passed the test and was told I could go change by about 1:15 pm.

I was still a little chilly and was grateful for the heat when we stepped out of the hospital in the bright sun. I was also grateful the walk home was downhill. Yes, I walked home from my bone biopsy. I also walked home from my breast biopsy and a kidney stone at that same hospital a couple of years ago.

We were greeted at my apartment by my brother and 8 month old niece, Tori, who took the bus up from DC for a visit. Tori has been all light and sunshine and a beautiful distraction for both me and my mom - the happy grandma. I spent most of yesterday drifting in and out of sleep and took some Tylenol PM around 930 and went to bed. I had a little bit of soreness yesterday that was easily resolved with Tylenol but despite a little bit of visible swelling on my sternum and some mild discomfort when I sneeze, I have felt fine today.

We had some transportation adventures trying to get to Shake Shack for lunch and a nice walk through the park this afternoon and I was worn out. I realize fatigue is something I will face a lot in the coming months but it is frustrating, especially when I otherwise feel fine.

The radiologist told my mom the pathology would be finished Wednesday at the earliest. My next appointment with my oncologist is Friday so mentally I am not expecting anything before then. I have flashes of fear but am keeping up for the most part. I had a moment during lunch when we were sitting on a bench and I was holding Tori and I had a bubble of emotion rise up as I held her close smiling at me as I worried about her not knowing me. I shoved it out of my head with other fears because right now, before anything is concrete, all I am facing is Stage II breast cancer. I'll continue to prepare for the worst but be optimistic about the best. And the best would be for this damn spot to just disappear. I am optimistic.

Chemo's Eve and Test Run

2011-05-26T23:01:00.000-04:00

Below are two posts for the price of one - the first from yesterday, the second today.

Chemo's Eve (May 25th)

My mom arrived last night and we celebrated with a walk in the first summery feeling evening of the year. We walked up to Lincoln Center and happened upon a gelato stand we couldn't refuse. It was nice to get out of the house after feeling restricted by my high radioactivity levels and pistachio gelato is good for all ailments in my opinion.

This morning was supposed to be my rest day between tests and my first treatment. Unfortunately the day didn't go quite as I had planned. After an hour of training at the gym where I almost felt back to normal after the hormones, I showered and then received a call from my oncologist. Before I continue I have to say, I have learned in this process there is no reason to be alarmist or surprised or concerned until there is something concrete to focus on. That being said, the doctor did say that although the MUGA scan was all clear (I have a good heart), the PET/CT scan showed a couple of issues. The first she is not concerned about - fluid in my belly. She chalked that up to the hormones from the fertility cycle and I concurred that my belly is still not back to its normal size. But the second issue concerned her - a "tiny spot in the bone" in the middle of my chest. She asked if I was available to do a bone scan today. Of course I said yes and a few minutes later a radiologist called me to see if I could come in immediately. Again, I said yes.

As I was walking down the long hall toward the Nuclear Medicine reception desk, I heard the receptionist tell whomever she was talking to on the phone "she's here, we need the script now." She remembered me from Monday. Also, I was no longer a routine patient, I was a rush job. The receptionist assured me she realized I would arrive quickly since she could see how close I live but apparently I arrived faster than anyone expected. Within a few minutes a young resident radiologist took me into a room to explain why they were giving me a bone scan. Except she kept asking about my liver. I assured her a couple of times there is no problem with my liver and that no, I have never had a biopsy on my liver. For whatever reason she did not seem convinced.

Then my technician Igor (I told you they are all vaguely of Russian origin) entered the room and took over. He gave me yet another injection of a radioactive substance but explained this one was small enough I could wander around in public - it is just my urine that is toxic! He instructed me to return in three hours and encouraged me to drink lots of water to flush the toxins out of my kidneys (in case you were wondering, radioactive pee looks just like the normal kind).

While we waited for the radioactive juice to work its way through my system, my mom and I ate at my favorite neighborhood French bakery (of course we had an almond, chocolate croissant) and then did a little shopping to pick my first day of chemo outfit much like she used to help me pick out the all important first day of school outfit. I also did my part to help out my local Borders bookstore by purchasing a large stack of magazines, a couple of books and some madlibs for my chemo survival bag.

Back at the hospital, Igor strapped me to the third scanning machine variation I've seen this week. In this one my arms were once again strapped to my sides and the table I was lying on was moved such that my head was under this giant white square piece of machinery. Igor asked whether I was claustrophobic as he moved the square closer and closer to my face. I reassured him that I am not and wondered what he would have said if I had answered differently. I asked how long this test would run and he said 35-45 minutes since I am "so tall." Nice.

It actually went by faster than I expected and Igor often checked in to see if I was comfortable (not exactly, but bearable) and if I wanted another blanket (no, thank you). The table moved so slowly it was almost imperceptible until I felt my fingers, that were dangling from the edge of the yellow band strapping me to the table, sense touching a different surface. By the time my mid-section was under the machine a screen on top of the machine showing my skeleton came into view. I tried to watch it looking for that tiny spot in my chest or anything else but unlike ultrasounds, I couldn't figure out what was normal or not so I gave up and closed my eyes again.

Before I knew it, the body scan was done and I had just another five minutes to wait while they scanned my head from the side view. Again, I watched the monitor wondering if my neck was abnormally long or if it just looks extra long in bones-only view but couldn't really speculate on anything else.

I was released from the table and to the waiting room for dismissal by the radiologist. After a few more minutes of waiting we were left to our afternoon. I was exhausted from all the sitting still - oh, and the shopping, a couple of hours of shopping wears me out.

I'll just say the only other thought I really have tonight on the eve of my first chemotherapy treatment is how maybe I've made too big of a deal out of all of this. Absurd, I know. But there is this tiny little voice at the back of my head telling me this is not worth all the fuss. Like maybe I am just trying to get attention in a really bizarre way. I think this is the tiny fraction of modest shyness I inherited from my mother that is usually suppressed by my natural attention seeking bravado.

In short, I am humbled by the support I have received from those of you near and far. Every little piece of it is greatly appreciated and treasured as I am overwhelmingly grateful to have each and every one of you willing to take part in this journey I am on.

Now, go lay out your pink gear for the big day tomorrow. Mine is prepped and ready along with my chemo bag of supplies and entertainment. We've even done a test run with the hair dye - it makes me feel very punk rock.

Love to everyone!
Alyssa

TEST RUN (May 26th)

Right now I feel a bit like the little girl who cried chemo.

As my inbox flooded with emails, my phone buzzed with text messages and my facebook page filled with friends and family near and far (including Australia!) decked out in pink for my first chemotherapy treatment, I received the news that I would not be starting chemo today. My hair was already pink, I was wearing my new pink shirt, a nurse had already strapped the plastic hospital bracelet on my wrist and I had even paid my $20 co-pay. It is a bright, sunny, beautiful day. The kind where bad news is not supposed to be delivered. Not when my mom and I are dressed like cotton candy.

Right now I would like to write about the funny details, like how confused I was by the XL size hospital gown that I was told to put on that appeared impossible to close or how after jumping over a puddle my mom remembered how scared she was snow-shoeing at Yellowstone this last Christmas to jump across the tiniest of streams that was but a quarter (possibly even an eighth!) of that puddle's width. But unfortunate news is best delivered in a hurry and without delay and flowery details. My doctor paid me that courtesy so I will return it to you.

That tiny little spot in my sternum showed up again on the bone scan. The fear is the cancer has spread through my blood and into my bone. The first step is a bone biopsy which was quickly scheduled for first thing tomorrow morning. If the biopsy is negative, we proceed as planned just with a short delay. I already have a rescheduled appointment for chemotherapy next Friday. Today may have just been a test run (note, don't try to stuff everything in one heavy bag - two will work just as well).

If the biopsy turns out to be positive for cancer, things get more serious. My doctor explained I would then have two options: 1) proceed with chemotherapy and radiation therapy and everything I can throw at it, or 2) take a pill called tamoxifin and hope it doesn't spread. Tamoxifin is a drug I am already slated to take post-surgery for about five years. It is a drug that interferes with estrogen production which is one of the reasons why the fertility preservation procedures were so important as it will put me in a menopause-like state.

As I said, my doctor was direct and to the point and outlined all of the information, allowed us time to process and ask questions and when I asked her to repeat it all she had me explain it to her and corrected me along the way or answered my confusing questions. She answered what could be explained and admitted to the parts that are unknown or difficult to predict. She explained that the first option - the aggressive option - only has a 5% chance of working and all of the side effects and life interruption that chemo brings with it. The second option is - in my interpretation - more passive, kind of a wait and see approach. I would just live with cancer.

She asked for my gut reaction and my mom said it before I dared - I would be aggressive. I agreed. I can't imagine what would happen to my mental and emotional state if I just took a pill, sat back and waited. How would I just go to work and resume my normal life relying solely on a pill? Besides - I couldn't help but think - the cat is out of the bag now, I've bought hats, scarves, bandanas, my boss bought me a wig! I've made work arrangements. I even posted it on Facebook! I'm prepared for the down side and I have amassed support and love and thoughts and prayers from so many places. I don't want my hair to fall out or my toe nails to turn black or to gain weight despite the fact that I'm nauseous and can't eat because of something horrifying called mouth sores but I can do it knowing there is a purpose to it and it is for a finite period of time and then I run off to Patagonia to celebrate being cancer free. That was the plan.

And it still could be the plan. Just tweaked.

As I said, the bone biopsy is tomorrow morning, I got lucky that the Friday before Memorial Day my oncologist's preferred radiologist is available. And let me tell you, I strongly believe that once you get a good doctor, that doctor will only send you to other good doctors so I want to go to her favored radiologist for a procedure I know very little about as of yet.

My first biopsy was just over a month ago and that week of waiting was extremely difficult. I do not think this week will be as hard. This time, I know the options at the outset regardless of the test results. Also, this time, I have a constant stream of photos and emails and texts and packages coming at me supporting me through this. I will not tell you this doesn't scare me. It does. So much more than having the most common and treatable of breast cancers, this is scary and less predictable. Less tried and true.

But, BUT! I cannot shift my attitude, I cannot collapse under the possibility of something unknown, unfounded and possibly untrue. I'll bask in the support I'm receiving because while as everyone sports their pink and informs their friends, family and co-workers they are doing it for a friend who is starting chemotherapy today, I will know, it was for an even harder day. The day I learned this cancer may be more challenging than I thought.

PET/CT Scan

2011-05-24T15:46:00.000-04:00

This is a week for firsts. In addition to my first MUGA scan yesterday, I endured my first day ever deprived of carbs and sugar. I wouldn't recommend it. I just felt hungry all the time. Even when I wasn't hungry I craved carb-based foods I never even eat. And not having even the tiniest square of dark chocolate in the afternoon? Not my idea of a good day.

But seriously, it was only one day and I somehow managed to survive the torture of no bread, pasta or rice (or potatoes or citrus or juice or pizza or popcorn or . . . I'll stop now). This morning my scan was scheduled for 9 am and despite going to bed before 11 pm, I did not feel well rested. In fact, after the effort of showering and getting ready for the day, I was exhausted. Can I still blame this on hormones? The idea of walking three blocks - up a hill! - to the imaging center felt daunting. So I took my building's courtesy shuttle which dropped me practically at the doorstep of the clinic and fought the urge to take a nap for the short ride. I also realized taking doxycycline on an empty stomach was a huge mistake and texted this to my mom. My dad who takes this regularly with his fist full of pills was "horrified" because he always has to eat at least a granola bar before taking it. Oops. Lesson learned. Once again, I have to learn the hard way for myself.

Since I left according to the shuttle bus schedule, I arrived almost 20 minutes early for my 9 am appointment. I filled out the 5 pages of questions about every doctor I have ever seen in my life grateful that I always carry my own pen since doctor's offices always prefer black ball point pens which never fail to make my already poor handwriting look like it belongs to a 12-year old boy. I have no idea why I can't write with those skinny pens but they just annoy me. The nausea persisted and the blaring morning news show on a tv no one was watching suspended above my head and the shabby haphazard decor did not help.

I selected the playlist on my ipod usually reserved for red eye flights and extreme work stress situations (it is soothing and titled "In a Funk" and contains a disproportionate amount of Beck's Sea Change and Radiohead in case you were wondering) and concentrated on not being sick.

Only a few minutes after 9 I was led by a woman carrying a couple of dollars like she was stopping at a vending machine after she dropped me off down another elevator to the radiology lab that time forgot. Okay, maybe that is a slight exaggeration but it seemed kind of abandoned with its empty waiting rooms with storage items stacked behind the chairs with magazines from 1986 (I'm making that year up). I was instructed to sit in one of those chairs with the arm rest for drawing blood at the end of a hallway.

I then met the nicest technician I have ever encountered. Also, the first non-vaguely-Eastern-European-possibly-Russian-accented tech I have encountered in my journey from mammogram to MUGA scan. He was relaxed and funny and slightly competitive with the nuclear medicine people I had encountered yesterday asking me if the IV line he inserted was better than yesterday's (it was, actually). He thoroughly explained why I was asked to abstain from carbs and sugar (an explanation I promptly forgot, see fighting off nausea above) and went over the process and time line of today's procedure. Happily, his time line was only about 90 minutes rather than the three hours I was prepared for.

He injected some more radioactive something or other into my arm and allowed me to select a flavor for my "Readi-Cat 2" smoothie. I was actually relieved I was being given something - anything - to ingest and selected the berry "flavor" which turned out to be more of a slight scent of berries and a photo on the bottle rather than an actual flavor capable of being tasted. It was less chalky than I anticipated and I gulped it down and my stomach settled while I relaxed in a cold room off another short, abandoned hallway in a black, leather recliner. This time I could laugh out loud as I read "Bossypants" because there was literally no one else around. I was told I could shut the door if it was too cold and it would warm up but I was a little bit afraid I would be forgotten somehow if the door shut in this weird sub-basement clinic. I was startled when my mom called and my phone had perfect reception, something that can be difficult on the streets of Manhattan and non-existent in the subway which I was convinced was just a secret door and passageway away.

(aah, nothing like a Readi-Cat 2 Berry Smoothie to start the day - note the soothing ambiance of the room captured in the background of the photo, the black thing on the right is the heater that emitted absolutely no heat until the door was closed)

My thirty minute lounging time went quickly and just as I was trying to decide if I should brave the hallways on my own to find the bathroom that was supposedly "down the hall on the right", the jolly tech guy returned with instructions to go to the bathroom and change into a gown (no metal in the scan, including underwire bras although apparently jeans with rivets didn't matter) in whichever order I preferred. Taking advantage of him being right there I asked him to confirm the directions to the restroom and opted for that first. There was one of those hospital bed stretchers in the hallway outside the restroom with a woman sleeping on it. Or at least I think she was sleeping. She was still there when I left and I chose not to allow my mind to wander as to what events transpired to leave her presumably napping on a stretcher in a creepy radiology hallway. I walked by another MRI room with the door open and a person lying halfway in the machine and hurried back to my recliner room to change. Sure enough, when I shut the door to change the room went from vaguely cold to inferno in seconds.

For once in my life (or at least in the last 7 or so years in which I've had asthma), my asthma got me out of something unpleasant (as compared to the daily inhalants I am forced to take so I can just breathe normally). I only had to drink the gross smoothie - no "contrasting" IV something or other, so my IV was removed and I crawled up on the table and asked what I should do with my arms and wondered why the table was so narrow. The tech told me I could put them at my sides (which meant they just hung down to the ground) and then he pulled them up by velcroing me in with this giant strap around my chest.

He had earlier asked me if I had ever had an MRI. I am never quite sure how to answer this question. I realize it is a yes or no question but the problem is my only prior experience with MRI machines was when I had kidney stones and both times I was already heavily sedated with morphine and if you have never had morphine, let me tell you, in the light of non-morphine day, you question pretty much everything that you thought was happening while you were under the influence. At least I do since both times I have no idea if they gave me anything in addition to the morphine and both times I am pretty sure I fell asleep in the MRI machine (if there ever was one!) and only remember the part where I was once the mystery patient sleeping in a hospital hallway on a portable hospital bed where I was abandoned and forgotten by some orderly and woke to someone saying, "here she is!" like I had wandered off of my own accord with that bed and IV stand dangling above me.

Anyway, this was not necessarily my first MRI-type procedure but it was the first one where I was not heavily medicated and all I knew was how people complain about getting claustrophobic. I did not. I did however get restless toward the end. I was in there thirty minutes - or more accurately, I was slid back and forth in and out of the machine for thirty minutes and during the last ten or twenty-five minutes (it's hard to know the difference) I was convinced that instead of the somewhat padded head rest I had previously set my head on when the test began, there was now some sort of metal rod poking up through the head rest which made it very difficult to not fidget against. When the table didn't move for what I perceived was too long a period I also feared I had once again been forgotten about and abandoned in there, especially since the little radioactive sign was no longer illuminated in the tube above me (which really should have been more reassuring). This rising panic passed when the table moved out of the machine and the tech came in and I thought maybe it was over when he unstrapped the giant velcro band pinning my arms to my sides. Close, but not quite. I had to hold my arms awkwardly above my head as I slid back into the machine for a few more looks.

And that was that. I was back on the street by 10:40 am with enough time to call my mom before she got on her plane and while too early to pick up the fries and shake I was inexplicably craving while I was in the tube, I did enjoy a late breakfast bagel and iced chai at home. Aaaah, the soothing nature of good carbs and sugar enjoyed together.

MUGA

2011-05-23T20:00:00.001-04:00

Before I start chemotherapy, I have a couple more tests that need to be run. This morning I had my first MUGA (Multi Gated Acquisition) scan to see if my heart is strong enough for chemo. For whatever reason this is the test I did not thoroughly research before reporting to the Nuclear Medicine section of the hospital. My understanding was that it would be similar to an echocardiogram. To my surprise, the first thing the technician told me is she would be drawing blood. At this point, I should just roll up my sleeve as soon as I enter a hospital, clinic or doctor's office because that is the first thing they all want these days. I can't say that I enjoy this but I am lucky enough to not have any extreme needle aversions to contend with and I am that weirdo who prefers to watch what is being done to me.
When I seemed startled at the suggestion of a blood draw, the technician asked if this was my first MUGA - um, yes, does it show? She kindly explained the entire process, including giving me a timeline and commenting that it was a good thing I brought a book.
I will pause here to give a brief promo for the book I'm reading - Tina Fey's Bossypants. It is hilarious. At one point I was sitting in the waiting room of the Nuclear Medicine section of the hospital shaking with suppressed laughter to the point that I felt I was making a spectacle of myself and yes, I had tears streaming down my face. I am now convinced funny books are the key to enduring long wait times.
So the technician explained that she would draw some blood, take it back to a lab for about 30 minutes (the time where I was back in the waiting room trying not to cackle too loudly at my book), mix it up with some radioactive pharmaceuticals and then reinject it into me in preparation for the scan. Fun times.

According to Wikipedia (I know, but it is the simplest explanation available), "the MUGA test involves the introduction of a radioactive marker into the bloodstream of the patient. The patient is subsequently scanned to determine the circulation dynamics of the marker, and hence the blood. . . . The patient is placed under a gamma camera, which detects the low-level 140keV gamma radiation being given off by technetium-99m. As the gamma camera images are acquired, the patient's heart beat is used to 'gate' the acquisition. The final result is a series of images of the heart (usually sixteen), one at each stage of the cardiac cycle." I found the whole thing pretty fascinating and was a little surprised that at one point Wikipedia calls it "antiquated" since it all felt pretty high tech from my perspective.

I found it interesting that the tech wanted to draw my blood from the opposite arm from where the cancer is located. One of the nurses at my oncologist told me this a couple of weeks ago after I had a ridiculously low blood pressure and when she switched the cuff to my right arm it was within normal range. I asked the tech why this is an issue and she said she doesn't really know, they are just advised not to take blood from that arm. Another question for my list.

At the end of the scan, the technician handed me a "Security Personnel and Law Enforcement Notification" that states I have "undergone a nuclear medicine procedure involving a small quantity of short-lived radioactive materials. The residual radiation may be detected externally." The expiration date is May 26th - just in time for chemotherapy! I think I will avoid the subway, airports and crowded places to be on the safe side.

Of course, tomorrow's test is the one I'm annoyed about today. To prepare I have been instructed to follow a low carb/no sugar diet. Turns out most of my diet revolves around carbs so this is a challenge. But only one day. Tomorrow I will not be going to the office or really anywhere after the test since my preparation sheet advises "Stay AWAY from CHILDREN FOR 24 HOURS". I was also told to avoid pregnant women. I think my radioactivity level will rise signfiicantly so I will do everyone a favor and stay home. That way I can read Tina Fey's hilarious book in the confines of my own home and not have to supress my laughter. I'll just be the crazy radioactive woman with the banshee laugh (a term bestowed upon me by my 11th grade AP history teacher when she kicked me out of class for laughing too much).

retrieval

2011-05-23T15:40:00.001-04:00

This has been my hardest week so far. I think the fertility hormones have caught up with me, as have my emotions. I am just tired. The kind of tired that feels insurmountable when it hits. The kind of tired where showering and getting ready for the day uses up all my resources and some rest is needed before continuing on with the day. My walk to work is similarly exhausting.

This extreme fatigue has me worried about what lies ahead.

On Tuesday I had my oocyte retrieval (which sounds far better than saying egg harvesting!). My friend Tiffany came up for a sleep over Monday night and I was pretty confident I would snap back to my regular energy and life - and waist circumference - by Wednesday morning at the latest.

Like all good sleepovers, we stayed up late Monday night catching up . . . and eating chocolate souffles with ice cream and berries. If you ever have a crisis, I suggest having Tiffany around. She should have been a boy scout because she knows how to be prepared. She asked question after question about what I think I may or may not need to get ready for a summer of chemotherapy and how to help the visitors we anticipate may be traipsing in and out of my place be helpful. We put some good lists together and I reminded her that I do not believe I will be an invalid. She agreed but suggested it is better to have everything ready. Like I said, preparation.

My retrieval was scheduled for 11:30 am and I was not allowed to eat or drink after midnight so I ate half an asian pear at 11:55 and gulped down the last of the water I was allowed. When I finally crawled into bed after 1 am, I didn't set an alarm hoping I could sleep late to avoid too many hours of thirst and hunger. I'm not a good faster. Head aches don't take long to creep in.

I was nervous about the procedure but anxious to get it and all of the shots and hard decisions about the babies I may or may not one day think about having behind me. As I dressed that morning I felt the importance of the day resting on my shoulders as I tried to pick something comfortable but not too frumpy to wear. I thought about how this might be a day I later remember as the egg birthday of my future child. It is difficult to express that feeling. I am not saying I had some type of spiritual revelation, just a solemnity about what I was about to do and how it could possibly impact my future.

We walked across town to the clinic and I think I shocked Tiffany a little when I asked if we could slow our pace a bit. I am never the person to ask to slow down but these hormones have definitely taken a toll on me.

The procedure was performed on a different floor than my usual appointments so instead of a bustling, crowded reception area with no fewer than 5 women answering phones and questions and directing patients to the proper place at a time, the 9th floor waiting room was small, quiet and serene with only one recpetion and one couple there waiting. And yet, the same longing feeling was lingering in the air and was almost more palpable due to how quiet everything was with no phones ringing and no nurses calling out patient's names every few minutes as women scrambled to gather all their belongings for their turn at a blood draw or ultrasound.

We didn't have to wait very long before I was called back to change. Tiffany was shuffled off to recovery room something or other and I was sent to a changing room and given precise instructions on what to wear and how to wear it. However, I forgot everything as soon as I drew the curtain and stared at the little pile of hospital clothing with a disposable blue cap on top. Except I remembered she told me I could wait to put that on later. I knew what to do with the socks and I thought she had said something about the gown opening in the back so I did that but there was another blue something or other left in the pile and I didn't know how to secure the gaping back. I heard the woman in the changing room next to me slide her curtain open and fiddle with the locker, I peeked out and noted she was wearing the white gown with the blue hospital-type-pattern opened to the back and the folded blue thing I hadn't yet picked up was another gown which she was wearing like a robe, open in the front. So I copied her and wondered where my listening skills had gone.

After locking my clothes and purse in the locker (with my inhaler I had to send Tiffany back to retrieve), I exited the changing room and opened the door across the hall to another hallway where they sent Tiffany. I thought maybe it was "Recovery Room 2" and was relieved to find the door ajar and Tiffany waiting. I didn't feel nervous but I was definitely experiencing nervousness.

I lounged in what was possibly a comfortable recliner made awkward by being covered in hospital wax paper while we waited and swapped hospital and surgery stories in between discussing the incredible feeling that pulsated through the hallways.

A nurse arrived to take some vital signs and to deliver the unfortunate news that my egg sack belly (my term, not hers) was not going to immediately shrink post-procedure and could potentially continue to grow until my body realized the hormones were not still being stimulated. Awesome.

Again, not much more waiting before the anesthesiologist arrived to insert an IV in my hand and to shoot saline solution into my system prepping for the anesthesia which gave me a strange internal cold feeling running up my arm. I asked a few questions and then said goodbye to Tiffany as I was led to the operating room with the doctor toting my IV stand. I was surprised to see my doctor casually sitting at a desk in the corner of the darkened room talking to a nurse. They immediately started making small talk with me as I climbed onto the operating table and the anesthesiologist poked at various machines behind my head. I was surprised the room wasn't refridgerated and commented on that and the doctor said most patients complain that it is too cold, but I was tucked into blankets and it was nothing compared to my memory of my two prior knee surgeries in brightly lit, sub zero operating rooms. The doctor made a couple of comments about how orthopedists are notorious sweaters . . . or something to that effect and explained that hospitals are generally kept cool to avoid the growth of bacteria. The best explanation I've ever heard for that!

After some more chit chat where the anesthesiologist chimed in something about liposuction I don't remember, another nurse popped her head in the room and asked if we were about ready and the anesthesiologist noted that she had already given me the medication and then I made some brilliant comment about how the ceiling was getting wavy and I was out.

The next thing I knew I was waking up feeling well-rested and ready to jump up and go home. No headache, no nausea, I felt fine. I was quickly given graham crackers and water and the nurse whispered to me that they successfully retrieved 23 eggs.

Twenty-three.

She asked me to keep that number quiet since it is much higher than most women get.

I cried.

Tiffany was soon by my side and I quietly shared the good news and after a water refill and a second packet of graham crackers I was asked if I could try and go to the bathroom. Still carting an IV, I was guided to the bathroom and told it was okay if I wasn't able to go but to just let them know.

I felt like a proud toddler when I emerged to report that yes, I managed to pee. Anyone who has traveled with me knows I am a pretty proficient pee-er. Most would say to proficient.

Anyway, with that news, my IV was removed and I was allowed to change and go home. Just like that. It all seemed so easy.

We hailed quite possibly one of the worst cab drivers in the city* who questioned the address I gave him because of course we were on a one way road heading uptown and my address required him to go downtown. I impatiently told him to just turn at the next block and circle around because I was not changing my destination to suit his needs. Which proved to be many. When we were finally heading in the right direction and turning onto my cross-town street, a traffic cop waved him to continue straight. He was annoyed but I really didn't care. Except that he kept forgetting where the gas pedal was and was constantly distracted by his phone and his newspaper. I was recovering from minor surgery, talking to my mom on the phone and periodically reminding my driver that the light is green, or all of the cars have moved forward and so maybe he should to. As we climbed out of the cab at my building I almost warned the woman who was climbing in after us to just wait for someone else or confiscate his phone and paper before going anywhere.

We spent the rest of the afternoon feasting on sushi and trying out the milkshake delivery place I've been curious about and watching the premier of the Real Housewives of New Jersey. I thought maybe the lingering effects of the anesthesia were making me imagining the atrocities on that show but apparently those were all real. I napped a bit and Tiffany productively typed out all the information we'd been discussing for me.

The next few days my energy continued to lag and my belly continued to grow to the point where yesterday I could think of nothing better than to have one - just one! - day where I could feel normal before chemotherapy starts.

Happily, today is that day. This morning my belly appeared to be closer to its pre-hormone induced bloated circumfrence (although I may be mis-remembering a smaller gut) and my energy is back. For example, I do not feel the urge to nap after walking to work. Hooray for a few normal days before chemo starts! Only, two of those days I will be radioactive . . . more on that to come.

*Actually, the worst cab driver I've ever had was a couple of months ago when I was meeting friends downtown - way downtown. I asked the driver if he knew the street. He reassured me he did and then promptly made the decision to take the most ridiculous route possible. Even when I told him to please not take 42nd Street, he turned there. I talked him out of his next decision to take 7th Avenue but somewhere in the West Village he finally confessed he had no idea where he was taking me!!! Unbelievably aggravating.

Weekend Fun

2011-05-16T21:22:00.001-04:00

I had a great weekend, how about you?

Last night on a phone call I actually said "the great thing about cancer . . . " I forget what it was but my friend rightfully mocked me for the phrase. And yet, I'm going to go ahead and use it again:

The great thing about cancer is how it shifts priorities. All of those lunches and dinners and phone calls I've been meaning to coordinate, schedule and return over the last few months . . . done, done and done. By letting my own schedule go (you know, because of the cancer), I have managed to meet various friends for brunch, lunch and dinner, go to a Yankees game and a movie, set-up for an alumni event, host a dinner and even make spontaneous plans when my original plan regrettably falls through.

And that was just this week.

I had to purposely skip out on something Thursday night just so I could spend some quality time with my couch because I was getting a little socially overloaded! Always good to look on the positive side.

As for my weekend. This past weekend holds one of my personal favorite events of the year in New York City - the 9th Avenue International Food Festival. I've written about my love of this particular street fair before so I won't repeat myself. I will say I think this street fair is generally the first one of the summer I attend so it feels like an opening. Unfortunately, due to chemotherapy starting up soon, I won't be eating street food this summer . . . have to be cautious with a weak immune system.

I have also stopped eating meat (but seafood is still in the diet) so I was curious to see how the street fair would go without it. My friend Julia and I still found plenty of food to sample (we split everything so we could try more options) including a lobster roll, vegetable samosas and the best mango lassi I have ever tasted, spinach-filo something or other (Greek), mozzerepa (a delicious corn pancake thing with mozzarella cheese inside), three little cupcakes from a Japanese dessert place I love (2 of the 3 were good and one was blah) and I know there is something I'm forgetting . . . what I am not forgetting was this fun old fashioned soda shop place where you bought a tin mug or a cup to refill all day.

They definitely made money on me since I only filled up twice and neither time all the way. Plus, I was one who splurged on the tin mug. I had Birch Beer and Orange Cream Soda. Both were delicious.

Here's a shot of this year's crowd. Saturday was overcast and on the cool but not cold side and ended up being quite pleasant since the rain stayed away (at least while we were wandering around).

I found a tent selling hats and went a little nuts. I bought five. Also, I shamelessly used cancer to bargain for a good deal. I told the guy I would be bald in a few weeks and needed lots of hats and I got a great deal (at least, I think I did since the other woman working there seemed upset at what I paid!). Here I am modeling one of my new hats:

In other weekend news, the fertility shots got more intense as I neared the end of my cycle (my retrieval procedure is tomorrow - hooray!). There was a lot of mixing of potions and different procedures for each of the three injections I was shoving into my belly. By the end, I was having a hard time finding a new spot for the needles. Here's a photo of all the junk I needed on display for the nightly routine:

I was also being monitored more closely by the clinic which means I was there Saturday, Sunday and today - before 8:30 am! And last night I had to give myself my last shot at 12:30, get to the clinic between 7 and 830 am and be ready for work. Oh, and it was pouring rain making it difficult to get a cab and slow going cross town so I didn't arrive until about 8:45 am. Which wasn't too much of a problem, I just had a long wait. On top of the news that I have no more shots, the doctor monitoring me this morning counted 14 eggs - 7 in each ovary! I was told I would be lucky to get 8 or 9. Of course, I am tempering my expectations a bit because I recognize that a count of 14 does not mean they will successfully retrieve all 14. But I also like the little sliver of hope offered when the doctor told me there may be more . . . wow!

In other fertility news, I watched a little video on the crypreservation process that includes the statistics from the clinic I am using (something I normally would have asked about or research before starting treatment but in this situation, I really just didn't have the time or mental capacity!). After watching it all under a magnifying glass I am really questioning what I thought I heard a few days ago about my eggs measuring 14 mm . . . clearly I misunderstood something at that appointment. At any rate, all is going well so wish me luck tomorrow.

I finished off the weekend by hosting a mentor of mine and his wife for dinner. I love long-lasting friendships that survive time and distance. I worked for him in Sydney, Australia exactly 12 years ago as an legal extern. It was one of the first stepping stones in my legal career and I believe it put me on the right path. Before I ever got the diagnosis, we had plans to meet up when they came to town. Instead of going out, I offered to cook. You see, among the information I have read about side effects of chemotherapy, I have learned many people have issues with their senses - smell and taste - on top of nausea making it difficult to cook. So I cooked.

I made a big pile of roasted vegetables with chickpeas (tastes like spring!).

Mushroom and snow pea risotto:

Some bay scallops with cherry tomatoes which refused to be photographed and a new chocolate souffle recipe I was experimenting with.

They looked prettier when I served them with ice cream and fresh berries.

Even better than the food was the opportunity to have good people in my home with excellent conversation about interesting topics. You want to know the other great thing about cancer? It shines a warm, glowy light on friendships and brings them in real close in a way we (or maybe I) just don't allow or possibly even see under normal circumstances. I am absolutely amazed by the generosity of heart of the people I have been lucky enough to cross paths with over the years. There is a reason I feel so strong and untouched by this thing inside me - I am protected by the love of my friends and family.

the birds and the bees . . . and possibly frogs

2011-05-14T12:01:00.000-04:00

I have a number of things on my mind but thought I would give a warning up front that if you are at all squeamish about frank and open discussions about reproductive matters (albeit of the clinical, petri dish variety), you might want to skip this post. I'm not, so here we go.

I am nearing the end of my "cycle" which is how the fertility clinic people refer to this whole nightly-injection-to-grow-my-eggs process. At this point I am giving myself three injections each evening, plus a couple of pills and I am either kidding myself or I am somehow a master of emotions because I have not really had the emotional mood swings I anticipated. Unless you count how snappy I get with my mom sometimes. I don't because I think that is just me being an impatient jerk to loved ones - par for the course, can't blame anyone but myself for that.

What I can blame on the injections is how my belly now feels like a pin cushion. Also, the bloating. A day or two ago my stomach popped out into what I am fondly calling my egg sack. If I was more familiar with the reproductive practices of the animal kingdom I would draw a nice little parallel here. Instead, I will probably inaccurately claim I feel like a frog growing my little eggies waiting to deposit them onshore somewhere and hope one day they survive the elements and one day get fertilized. This morning I was told I have ten eggs. TEN! I realize that doesn't mean they will successfully retrieve all ten, nor does it mean they will successfully freeze all ten but the more they see growing in there, the better my odds are at having a few successfully frozen.

How do they know I have ten eggs growing in my bulging little egg sack? I'm glad you asked. Although you may not be since I'm going to right ahead and show you something that I find part hilarious and part horrifying:

At that first fertility appointment I walked into the exam room and was startled to see the ultrasound machine all prepped and ready to go with a condom. I was a bit dazed and overwhelmed that day already and this thing nearly sent me over the edge. But it isn't actually a condom, it is a sheathe:

So much better, right?

Well, if you have been through IVF none of this will be news to you but if you, like me, have never even thought about that sort of procedure let me tell you, I am so amazed by the women who go through this - many of them multiple times. During the 12-15 days of the cycle, I go to the clinic every two days for blood-work and a friendly visit with the ultrasound to count my eggs and see how they are growing (last appointment they were 14 mm! forgot to ask this morning). The same day as my appointment I get a call from a nurse who talks me through what injections I should be taking and advises me as to when I should return to the office. Yesterday I had both a nurse and my doctor call. My doctor has been especially attentive. For all I know he is this way for all of his patients and not just me because I'm the cancer girl but until today he has made sure he has done all of my ultrasounds. And today's doctor seemed extra attentive as well as if he was told I'm the special case who needs a little extra. And I appreciate it.

Although to be honest, they probably treat all of their patients this way. I mean I am on a bit different path because of my cancer and I am on a highly accelerated track with bended rules and modified procedures but every woman who is there is in a tense and emotional spot. Each visit I am acutely aware of the shift in environment as I enter the waiting room. The air feels charged with a longing or yearning, a palpable desire to do whatever it takes for a child. It is almost as if you can feel the extra hormones being injected directly into the room as a whole rather than each individual woman. At first I thought it was just the newness of the experience but each time I sit in the waiting room, I feel it. I want to hold each woman's hand and reassure her. Many sit with their presumed husbands but others are there on their own because this appears to have become just part of their routine. The men seem anxious as well and are often there on their own, looking just as nervous and possibly more jumpy than the women.

I'm happy to be nearing the end of this process. A week ago when I gave myself my first injection I thought maybe I was nervous about the whole process for nothing as it just didn't hurt after I pinched my skin so hard I didn't even feel the needle go in. But now I've moved on to more and more complicated injections and with three a night I am running out of fresh spots to poke. There are little pinprick marks and light bruises and one injection leaves a redness that is gone after 20 minutes or so.

On Tuesday morning I made my final decision on what exactly I will be freezing. Up until Monday night I was walking down the path toward embryos with a sperm donor, even though the whole thing seemed overwhelming with all the undetermined contingencies ahead of me. But as with all of my decisions, after devouring information and weighing the options and pushing forward, an answer spoke to me.

Tuesday morning I went to the clinic for my blood work and ultrasound at 8 am knowing I needed to just turn around and go back at 11 am for my appointment with a psychotherapist who would determine whether I was mentally sound enough to follow through with this process. This is one of those modifications in process I referenced earlier. Normally, there is a significant checklist to tic through before commencing the cycle but I was accelerated so despite the fact that I was already shoving hormones into my belly each night, I still had to pass the mental fitness test and turn in the oocyte or embryo consent packet.

After the first appointment I went to my office and opened the top folder to review the forms again. The first of the three identical folders I opened (the third was just general information) happened to be the oocyte option. On my walk from the clinic my thinking had shifted to oocyte only and when I opened that folder and re-read the forms I started signing. No more doubts or worries or anxiety, I just knew this is the option that is right for me.

What tipped the balance?

The research consent forms.

In all of my research on fertility preservation I have been surprised by how experimental oocyte cryopreservation is. For some reason - whether from the media or casual conversation - I had the impression although pricey, it was a viable option. But compared to embryo cyropreservation, it is still newer technology that needs a lot more data to improve since as one article I read put it - "the prospects of pregnancy are very low if only one treatment cycle is available." The article goes on to state

Freezing mature oocytes is a technical challenge because mature human oocytes are extremely sensitive to temperature changes and have limited capacity for repairing cytoplasmic damage. Cryoprotective agents (CPAs) and/or ice crystal formation during a freeze-thaw procedure can lead to depolymerization of the meiotic spindle and, consequently, aneuploidy (12, 13). Zona hardening can also occur as a result of the premature release of cortical granules from the ooplasm when oocytes are chilled or exposed to certain types of CPA (14), although this problem is circumvented using intracytoplasmic sperm injection (ICSI). Human oocytes can be cryopreserved at the metaphase II stage or at the germinal vesicle (GV) stage, although its efficacy and safety are unknown.

("Fertility Preservation in Female Cancer Patients: Current Developments and Future Directions", S. Samuel Kim, M.D. Jan. 2006.) In other words - freezer burn is a problem with freezing eggs.

For cancer patients, embryo cryopreservation is the most successful fertility preservation method with a pregnancy rate of 20-30% per transfer of two to three embryos. Due to the ice crystal issue, the success of oocyte cryopreservation is significantly reduced. The oocyte survival rate during the thawing process is only 37%, however the pregnancy rate per cycle is reported to be as high as 22-25% after sperm injection and embryo transfer, but this rate is not routine so the realistic rate of success is only 2.2, or 3% pregnancy rate per thawed oocyte. And as of 2005 (the date of the article where I'm getting these stats) fewer than 100 births have been reported from oocyte cryopreservation. ("Potential Options for Preservation of Fertility in Women", Rogerio A. Lobo, M.D., The New England Journal of Medicine, July 7, 2005.) More recent articles indicate improvement in the freezing process but I don't think the statistics have improved significantly on the actual success rate of the thawed oocyte achieving pregnancy.

All that being said, by selecting this as one article puts it "investigational, expensive, invasive" option, I am not only giving myself some peace of mind that I am taking steps to preserve my fertility - fertility which I may never have the need to call upon - but I am also adding a tiny little data point to the overall research which could eventually improve the options for other women in my position.

I don't say this to be noble. I also do not feel like I am making a sacrifice for this option. This is the right choice for me in my current position and the fact that it can make some tiny difference for others down the line - all the better.

But enough about fertility. Let's now talk genetics.

Last week, as I mentioned before, before my first appointment with the fertility clinic, I met with a genetic counselor. My oncologist wanted me to meet with her to map out my genealogy cancer chart (for my LDS readers, "genealogy, I am doing it" may be ringing in your head as it is in mine, although I don't think the primary song was referring to this type of family tree) and to get tested for the BRCA1 and BRCA2 genes. You may have heard about the breast cancer gene before. I had. But only in those passing news stories about young women who get double mastectomies because of the gene despite the fact they didn't have any sign of breast cancer . . . yet.

I didn't understand. I thought it was fear based.

The genetic counselor explained with pie charts and percentages I do not recall how the BRCA1 and BRCA2 genes greatly increase your chance of getting breast cancer or, in my case, increase the chance of recurrence. While double mastectomies are extreme for young women without cancer, it seems to be a different matter for someone in my position already queuing up for surgery. With chemotherapy to reduce the tumor, I will likely only have a lumpectomy this fall to remove what is left of the cancer. But if I have one of the two genes I will most likely opt for a double mastectomy to reduce the odds of recurrence.

This sounds pretty horrifying at first, I admit. But then I learned that the reconstruction is part of the same surgery - there just wouldn't be a time where I would have to be without breasts (an option some women might choose). The breast surgeon performs the mastectomy and a plastic surgeon swoops in to finish with his magic. And let me tell you what I learned about his magic . . .

I have long mocked implants. I do not understand them. I have never been much of a boob person. When I was younger (read: thinner) I mocked my own As and was soon content with the Bs I eventually grew into. And in running and other active sports, I am grateful for my relatively small size - they are easy to contain but substantial enough to give me some shape. Good enough.

So while I appreciate that very small women might have a desire for something more substantial, that desire has never been in me. I mean, I can get away with whatever v-necks I choose without fear of too much cleavage. I have to go to some effort with the right bra to even push things together enough to get cleavage! Choosing sports bras is relatively simple as no special structure is needed and it is rare I even notice much bounce.

But now friends are asking if I would go bigger if given the opportunity and I have to wonder . . . would I? Or would I choose to remain relatively the same size, just . . . perkier? I don't know. But I must say I am pleased with the other options. I learned that implants aren't the only choice in reconstruction. The surgeon can take "tissue" (which I am interpreting as "fat" but that's just me) from the stomach or butt and use that instead! That could definitely affect my decision on size. I mean, the bigger they are, the more I presume they take from my ass (and possibly inner thigh!). That sounds like a win-win cancer makeover - lipo and a boob job in one.

I'm getting ahead of myself. The results of my genetic testing should be back sometime this coming week and of course I prefer to not have the gene so I don't even have to consider all of this but if I do, it is nice to know there is sort of a consolation prize, if you will.

Before I finish this monster of a post, I want to share a little piece of happiness I stumbled upon as I sat in the waiting room at the breast surgeon's office waiting to meet the genetic counselor. I opened a magazine I had brought from home to this page:

It is a Jeep ad but for me at that moment, it was a sign. A sign that I am genetically engineered to be BRAVE and FREE. Brave for the coming months of treatment and Free of cancer at the end. Staring at that page, which I want to frame, I felt a cool breeze in my hair and the sun on my face as if I were standing triumphantly at the top of the mountain instead of down here in the muck and fog, trying to find the trail head.

Biopsy

2011-05-13T15:03:00.000-04:00

Below is a somewhat edited version (if you can believe it) of my biopsy, including my late-night nerves from the night before.

April 21, 2011 (wee hours of the morning of April 22)

It is no secret that I love memoirs. There is something so intimate about reading personal stories written by regular people who experience difficult things. It is inspiring.

A year or so ago, I’m not sure exactly when, I picked up a book called The Middle Place, probably at an airport but maybe during one of those rare times I allow myself to stop in Borders at Columbus Circle on my way home from work or while I’m running errands on the weekend. I don’t allow myself to stop in regularly because my apartment is already full to the brim with books and I find it difficult to walk in without buying a book or two. But back to this particular book. It was open and relatable and a super fast read. Tomorrow I am getting a biopsy on my left breast and I cannot sleep. A particular passage in this book kept flashing into my head. I remembered how much it jumped off the page at me and how right now, as I am waiting to find out if this is anything to worry about or not, I can once again relate to the author – Kelly Corrigan and her words. In my restlessness, my bed was no longer comfortable and my legs are achy for no reason and I keep having a small, non-painful, just inexplicable muscle spasm in that fleshy spot near my armpit, the spot I thought was my muscle when I was a little girl. It is on the right side and has been spasming off and on throughout the evening. Anyway, I got out of bed and knew exactly which bookshelf held the book even though I couldn’t remember the name – but there it was, waiting for me. I opened it up, curious to skim the beginning chapters to see if her whirlwind lump to biopsy story had any parallels. It does.

Except my reaction is more calm. I’m not emotional. I haven’t cried. I’ve questioned the lack of crying but haven’t really felt it. Mostly I have been distracted wanting to just get on with it one way or the other as I go over the possibilities in my head. Which brings me to the other feeling I’ve been questioning over the last couple of days. The feeling Corrigan captures so well in a passage I actually underlined when I initially read the book:

“A sick part of me actually wants the bad diagnosis, if only to prove that I know my body, that I am not a hypochondriac looking for unwarranted attention. . . . I almost want the lump to be a tumor so he sees that sometimes fears are justified. But it’s more than that.

“I want to know what it would be like. I want to know how I would perform. I remember a Poe story I read in college, ‘The Imp of the Perverse,’ about this elemental, radical impulse people have. In the story, a man stares into an abyss from the edge of a cliff. At first, he is dizzy with horror. He shrinks back. But eventually, he is consumed with the idea of falling, even jumping, just to feel the rush of the plunge.

“Nothing bad has ever happened to me. No disease, no disorders, not even a broken bone. What would it feel like.”

The part I related to so well then and now is the “I want to know what it would be like. I want to know how I would perform.” I told my mother today after I repeated the answers I received from my doctor (or I should say, the doctor who called me back from my doctor’s office) and told her about all of the information I had gulped down after googling and clicking and linking that I felt prepared. I am armed for the worst. I don’t want it to come but there is this little inkling of a voice in the back of my mind that is chanting “Bring it on, I will kick ass!”

Maybe it is the adrenaline, thrill seeking, competetitive side of me that wants to prove that I can beat something as big and scary as cancer and I can do it on my own. Why is that? I know relief would be the first sensation if the mass/lump/tumor whatever you want to call it is benign but there is another feeling I have an inkling of for which I cannot think of an adequate word. It certainly isn’t disappointment but there is an element of that let down to it. I am a soldier ready for action – locked and loaded, armed with questions for the breast surgeon, knowledge of my insurance options and work disability policies and procedures. If I researched all of this for nothing . . . then what? I just go about my business as if this lump never appeared?

80% of lumps are nothing. It is highly unlikely that I will be among the 20% to move on to the consultation of how to treat cancer – surgery, chemotherapy, hormone treatment. But if that is the outcome, I am ready.

I have drafted emails to friends in my head. Questioned who to tell and when to tell. Do I tell friends now while I’m in the scary anticipation phase? Even though I’m not emotional or upset, just distracted? Do I send one big mass email begging for everyone to think of me because my day to day life is truly lonely? Do I secretly want the worst to happen to test this network of people I have built up around me because part of me thinks they will fail and all I will have is my mom flying back and forth?

If it happens I feel I will want dinner parties and brunches and long phone calls for support. Will I get that?

Will my family urge me (beg me/guilt me) to return to church? I suppose I have my own kind of faith. The kind that doesn’t think of death – just inevitability of fate. I either have a malignant tumor in my breast or I don’t. Simple. Nothing I do at this point can change that fact. Will going to church, prayer, fasting by myself or others bring me comfort? Perhaps to some degree. I don’t know but what I do know is the knowledge that others are doing that for me would buoy me up somehow and that is what I think faith is about.

It is after 3 am and I really need to try and sleep. I have to be at the radiation center by 830 tomorrow for my 9 am poking. I will be thinking about Corrigan’s description of her biopsy: “for forty minutes, a nervous young doctor jams something that looks like a sixteen-inch harpoon into different parts of my breast while a cheery nurse guides her via sonogram.” Something to look forward to.

I am comforted to know that I reached outside my family and told a couple of friends about the biopsy. We are having dinner on Monday night and I knew I would be distracted by the waiting so I needed them to know. Plus, if the results are bad I need someone to go to the appointment with the breast surgeon with me next week. Both immediately sent reassuring emails. Joo will go with me if I give her some warning on timing. Michelle is traveling for work but offered to reschedule if I needed her. She also offered to talk. So I called her at the office at 8 pm while I sat in my office trying to finish the most essential of my neglected work to-dos. She is going home for Easter tomorrow but offered up her boyfriend and his lovely house up-state as a refuge this weekend.

I don’t think I will take Michelle up on her offer but I appreciate it immensely and hope for more offers to come. This weekend I will relax. Maybe work. Definitely clean my apartment. Maybe go running. If my boobs aren’t too bruised. Possibly attend a running expo and definitely have brunch Sunday with my friend Brooke. Maybe tell her about the tests.

I’m impatient and the last three days from lump detection to sleeplessness has dragged out far too long. I can only imagine how slowly next week will crawl along waiting for the biopsy results. I’m told my doctor will tell me as soon as she receives the pathology report, I don’t have to wait for the appointment Friday afternoon with the breast surgeon, that’s for sure. Unless the results aren’t in before then. Argh. One step at a time.

First, sleep.

Second, biopsy.

April 23, 2011

I should write about the biopsy instead of lying around on my couch emptying my dvr and avoiding showering because I don’t want to figure out how to saran wrap my bandage and still have an enjoyable shower. I’m also avoiding laundry. And wishing I could go running. Even if it is rainy and cold. My post-biopsy instructions said to avoid strenuous activities for 24 hours. It has been over 24 hours now, does that mean I can run? Even though yesterday walking caused more movement than I cared for even with a sports bra. A nice tight one. I didn’t realize my Bs moved that much while walking. I guess I’m learning a lot of new things.

I’ll back up.

After Thursday night’s insomnia, I managed to snooze past my alarm(s) and woke up at 750 am. I was scheduled to arrive at the radiation center at 830 am. Always a terrible feeling. I knew I couldn’t face the whole process without a good shower so I sped through my routine in record time – I even shaved and blew my hair dry – and was out the door at 820 am. I collected a banana from the gym downstairs and walked up the big one block hill to the center. Luckily it is close. I checked in at 831 am.

There really was no reason to rush. And I knew that all along. I was scheduled for my biopsy at 9 am and the paperwork took less than five minutes despite the 30 minutes they allotted to the task. I mean, it was one page requesting the same insurance information I provided on Wednesday that is already in their system. Oh, right, they announced shortly after I sat down that their system was down. Whatever that meant.

I read calmly for an hour or so with headphones playing soothing music. I ate my banana. I went to the bathroom. I drank some water. I couldn’t go back to reading. Close to 10 I was told they were finishing prepping the room. I waited some more. With headphones firmly in my ear, I leaned my head back on the wall and suddenly felt this was a scene from the movie of my life. One of those intense moments of stillness where the audience already knows what is coming based on the chords but there I sit with my eyes closed leaning my head against the wall. I felt over dramatic with that small gesture so I sat up straight and fiddled with my phone. Then my nervous bladder insisted I pee again since I had finished my bottle of water.

Waiting is the worst part.

When I returned from the bathroom a second time, the technician, Marina (the same one who performed my ultrasound on Wednesday) was waiting for me at the front desk claiming she had been looking for me. I wanted to respond that I had been waiting for her more than an hour and she could not have been looking for more than 90 seconds . . .

I tried to pay attention to the time but now, only a day later, I can’t remember what time I finally went back to the room. You see, I had to change and then wait some more. My only short wait was in the freezing secondary waiting room with all of the other pink robe clad women.

But there was still plenty of waiting left for me. Marina showed me my mammograms on the lightbox on the wall. She pointed out the larger lump from my left breast and told me it was close to 4 cm. Then she showed me the very small swelling in my lymph node under my arm pit and finally the 3 cm lump just behind my nipple. She reassured me that the doctor was excellent and showed me the tiny “clip” he would be inserting into the larger lump when he finished the core biopsy. I had read about clips being inserted but hadn’t expected it in my case. In my head I envisioned a paperclip for some reason. But this thing was a teeny-tiny s taped to a piece of paper inside the cupboard door at the end of a checklist of items to review with the patient – me.

The room was cold. I asked Marina questions and she gave me a blanket to cover the still clothed bottom half of me but it still helped as I lay shivering a bit both from the cold and nerves on the table, my left breast exposed, my right half covered by my pink robe and one of those paper coverings doctor’s always have over my right side.

Except the paper wasn’t there quite yet. The doctor took a while to arrive so I had more waiting.

I forget his name. I think it starts with a W . . . He was efficient and to the point. He answered questions and repeated answers Marina had already given me. Yes, he would be performing two fine needle aspirations for the smaller masses and a core vacuum for the larger one, that would come last. He was kind but not overly warm. That works for me.

I think it was 11 am by the time we actually got started. I think. It could have been earlier, but not by much.

Marina had laid out the wrong needles for him and he asked for the correct ones. She seemed a little embarrassed and nervous with him. But it didn’t affect me or the procedure. He had me turn onto my right side – but only partially – and bolstered my back. He had me put my left arm over my head and this is probably when that paper was draped over me. Marina operated the ultrasound machine while I watched the monitor I was facing with the doctor at my back. Taped to the side of the monitor was a list of 100 stress relievers. I read most of them before anything actually started.

I intended to watch everything. Ask questions, participate. Initially, that plan worked.

First, Dr. W did an ultrasound to locate the bulge or swelling or whatever you want to call it in the lymph node in my arm pit. The gel felt colder than the last time I had an ultra sound on Wednesday. I watched the monitor. He then cleaned everything off with alcohol and I got really chilly. I was a little embarrassed to know my nipple was a giant goose bump out in the open for viewing. But that passed quickly. The next step was a topical anesthetic of some sort, then a short prick indicating the first of many needles to come had injected anesthetic to start the first FNA.

The first “harpooning” expedition was under way. It was a little uncomfortable, like a prolonged pinching displaced from where I thought it should be. But I really couldn’t see where the needles were. I watched the monitor as the Doctor explained yes, that was the needle making its way towards the black blob. Fascinating that he could locate it that way. Once the needle made contact with the blob, it got more uncomfortable because he had to rock it back and forth a bit to collect the tissue he needed (and by it, yes I do mean my breast).

After extracting the needle I was able to put my arm – which had started tingling either from its overhead position or the anesthetic – down and rest for a minute. He and Marina were at the small counter looking at the sample he had extracted. After inspecting it, he said he would need to do one more.

The second one I didn’t feel the pinching and the wiggling around of the needle for the cells was not uncomfortable at all. He deemed this second collection a success and returned to do another FNA on the tiny lump. Again, he first looked at it with the ultrasound, then cleaned the gel off with alcohol and then a surface swipe to help with the pinch of the needle, talking me through each step. The first shot hurt more than the prior anesthetic because this one was inserted close to the nipple – “a sensitive area” he remarked. Um, yes, I'm well aware.
He gave the anesthetic a little more time to sink in this time and when he stuck the long FNA needle in, I really didn’t feel much at all. I think this one only took once. I was getting the hang of it. Not a problem, two down one to go.

I was feeling tough and like a good patient. Holding still, not interrupting the doctor by fidgeting or even breathing too deeply which I saw bounced the image around on the ultrasound a lot. I didn’t refrain from breathing, I just stayed steady.

Then it was time for the core biopsy. I read a lot about it and Dr W explained it once more. I thought all would be fine. Same routine – alcohol swipe, anesthetic swipe, shot to deaden everything else under the surface. I was facing away but when the Dr told me he was making a small slit for the needle (a needle too big to squeeze in on its own I guess), I didn’t feel anything. I had no idea what was happening on the left side of my breast. Nothing to worry about, just needed a larger opening for this needle that would be scooping a larger sample from the bigger lump. The one that gave everything away by its size to my doctor on Tuesday. The one no one was telling me might be a cyst. No one ever mentioned cyst.

As I waited for the next instruction, the doctor explained he had inserted the needle, which would stay there for each extraction. I think I could feel a slight pulling or pinch or heaviness there or maybe I was just remembering how it feels to have a needle in place for an IV, where it just sits there in the vein while nurses plug this and that into it.

As explained in one of the many explanations I’ve encountered online: “A core needle biopsy is a percutaneous ('through the skin') procedure that involves removing small samples of breast tissue using a hollow 'core' needle.” I also read this: “Patients may experience a slight pressure during core needle biopsy but should not experience any significant pain. As tissue samples are taken, clicks may be heard from the needle and sampling instrument.”

The doctor fired the “sampling instrument” before beginning so I would know what the supposed “clicks” sounded like. I would never describe it as a click, the sound is more akin to a kid’s cap gun – a distinct SNAP! that signified some effort was being made to pull the trigger.

Also, it wasn’t slight pressure.

I was so unprepared for what happened next.

The doctor said “go” or “fire” or “now” or something that in my head I remember only as “fire” each time he pulled the trigger or whatever it was he did to shoot excruciating pain into my chest. I gasped and possibly jumped. Or some other strong reaction, I don't know. He knew it hurt. I didn’t cry. I haven’t cried all week. I started taking deep, controlled breaths to get through it as I wiggled my toes. For some reason concentrating on flexing my toes up and down, up and down, still enclad in my laceless converse helped. The doctor apologized. I squeezed my eyes shut to breathe through the pain. It was terrible.

He warned me for the next one, the same as the first and apologized in such a sincere way I knew he hated doing it. No tears, just breathing.

Where is my happy place? A beach? I couldn’t envision anything but a trite desert island scene with a palm tree. The next thing that sprung into my head was the top of Half Dome in Yosemite last summer. A cool breeze, the thrill of reaching the top, the spectacular view, new friends surrounding me. Triumph. I concentrated on that image. Breathed, wiggled my toes and wished myself to the top of Half Dome.

I don’t know how many extractions were done. After the first two terrible pops the doctor stopped and gave me another shot and waited. He explained that patients react very differently. Some feel it far more than others. Some don’t feel anything. Oh to be one of those patients. We waited for the second dose to sink in and he apologized that he had to keep going. I think there were several more but my eyes were squeezed shut, my toes were wiggling and I was concentrating on my breathing and envisioning Half Dome and that cool breeze. When it was all over, I was terribly sore. I asked how many he did and he said three. That didn’t seem right at all. I could have sworn there were more pops.

After the other needles came out, they had asked me to hold the gauze over the spot where the needle was extracted. As I tried to reach for it, the doctor told me to just relax. They swiftly moved everything away and pressed gauze onto the spot where the fat needle had been and pushed really hard. I remember at some point, either during the biopsy or during this phase where they were cleaning me up, Marina was reaching across my body to hold something or other for the doctor and her arm rested on my right arm. It was reassuring somehow.

While the doctor fiddled with the sample and Marina cleaned me up I turned flat onto my back, dazed. The doctor asked if I wanted to see the sample since I seemed curious about all the details and I said yes. He showed me one of those little medical cups that you also see for urine samples, only smaller. It was clear plastic with a label on top of the ridged-side lid and floating in what I presume was my blood was a worm-like piece of my tissue. A sampling of that terrible thing growing in my breast that could be growing and taking over.

This may have been my first look at cancer.

It looked foreign floating there in my blood. Or was it just some red liquid?

I had read that if there was no blood then they didn’t need to test it, that meant it was just a cyst. Again, no one was mentioning cysts and no one was saying anything about not sending it to the lab. It was all going. All my samples were being sent off to be studied.

Marina was putting pressure on my breast to stop the bleeding. I did this for a little while as they cleaned up but apparently I wasn’t pressing hard enough because she seemed to be shoving everything from the left to the right. Doesn’t she know how much it hurts to push on a bruise? I was certain my breast would soon be black and blue.

The doctor asked if I had any questions. I asked about when to expect results and if everything would be sent to both my referring physician and the breast surgeon I was seeing next Friday. He said yes but advised me to call and confirm. He said yes, if the results were in before Friday, my doctor would call me. Then I asked a big question.

“If the results are negative, can I cancel Friday’s appointment?”

Dr. W paused, turned to look at me with Marina pushing on my breast.

That pause felt significant.

He spoke “The large one is” another dramatic pause “concerning.” I think he gestured to the xray of it still on the light box.

I couldn’t respond.

I don’t think we said anything else. We had been talking about kidney stones for some reason while he was cleaning everything up because I was telling him I had a high tolerance for pain but that core needle thing kicked my butt. He told me it was a “battle story” like he knew how much I like to turn hard things into mile markers.

We had been chit chatting but after “concerning” hung in the air I couldn’t say anything. I didn’t want to know more, especially since I assumed it was speculation without lab reports. But I also felt he knew. He knows. He has seen a lot of lumps and mine is concerning.

I was then given the terrible news that the next step was a mammogram. My breast hurt just sitting there and was worse with someone pressing on it and now you want to squeeze it in a vice? That was too much.

I almost cried.

Marina explained I wasn’t bleeding anymore but I needed to keep pressure on it while she went to arrange the mammogram so it didn’t start bleeding again.

Left alone I fought off the swell of panic. The what-ifs were starting. Principally, I thought, this could be the easiest step. This pain I have right now could be just the beginning. Something I look back on as minor. I could be opening the door to so much worse right now.

Marina came back and removed the gauze and taped me up. At some point she handed the samples all off to someone and whispered instructions I couldn’t hear. I wanted to ask what she was saying. Was she telling them it was a rush because that large lump is so “concerning”? Was there something else in there no one was willing to tell me about yet? Why whisper? Those samples came from me, I should know.

But I didn’t want to know right then. I was overwhelmed already.

After I was taped up with some steri-strips and left alone again, I couldn’t just sit with my thoughts so I retrieved my phone and before I had a chance to look at anything, Marina was back with the mammogram technician. I was dreading this part.

I struggled to get my purse off the hook on the back of the door as it was tangled with a hangar. Finally the hangar clattered to the floor and Marina told me to leave it as I was shuttled across the hall. I just couldn’t face the idea of any more pain and the technician explained again that the mammogram was just to ensure that the clip was in properly and she would squeeze as little as possible.

She could see the terror in my eyes.

I imagined that I could feel that tiny little s somewhere in my chest.

I opened my gown again and she wrapped the lead apron around my waist, warning me it was cold. She positioned me at the scary machine and I tried to keep myself calm and collected.

The first one was facing the machine and she did as promised, only barely squeezing my breast. Not as bad as I feared. It wasn’t even as bad as Marina’s two-handed pressure. One more side view and I was done.

I was told to wait to confirm the films came out okay. I walked through the long hallways to wait in line at the bathroom while someone stayed in there far too long. The place is being renovated so the main bathroom is closed and the one I used earlier was back in the other direction through several labrynth-like hallways in the main hall by the elevator where I doubt they want women in pink robes wandering. This was a single unisex bathroom next to the main radiology waiting room where patients weren’t just waiting to find out if that lump is breast cancer. No pink robes here.

I heard the toilet flush, the sink run, the hand dryer blow, then Lysol being sprayed. All of this was then repeated. I expected someone to come out with a child but a sole woman emerged. She apologized for taking so long and was embarrassed to come out to a line waiting.

She wasn’t wearing a limp pink robe with a pale, pain-stricken face.

She wasn’t thinking about cancer.

Neither was the man playing scrabble on his ipad as he waited against the wall next to me. I wanted to suggest a word that jumped out of his letters at me but I refrained and just confirmed that yes, I was waiting for the rest room. He was in street clothes. I think it was awkward for him to stand there next to me, clearly in pain, not overly concerned with cinching up my robe.

Back in the cold pink-robe waiting room I didn’t wait too long for the technician to tell me my mammogram was fine and I could leave.

Was I imagining the looks from people?

Was I being dramatic?

I looked in the mirror as I changed into the sports bra they recommended I bring with me. I was worried it would hurt. I worried everything would continue to hurt. I inspected the gauze, the nipple covering they gave me for the mammogram (purple this time) and noted the swelling. I was lopsided already.

Maybe this is just the beginning I thought again.

I hurried out the door to the street. Then slowed realizing movement hurt. I called my mom as I walked the half-block to Duane Reade to purchase some Tylenol and M&Ms. I described it all. The pain, the “concerning” comment. The waiting period.

Could be as early as Wednesday but not likely before Thursday or Friday.

Thursday I have a closing.

I talked to my Mom on the walk down the hill in the unseasonably cool air tucked under a hat and sunglasses oblivious to people around me who may be startled to hear biopsy, breasts, boobs, needles, cancer all intertwined in a conversation on the street.

At home I considered ordering food since it was right around noon. I wasn’t hungry.

I called my dad. Took some Tylenol and put an icepack on my chest and was relieved to discover it helped with the pain.

I watched some trashy reality tv waiting for me on my dvr and forced myself to keep my eyes open long enough to last through 30 minutes of icing.

I was asleep by 1 and didn’t stir until 4 pm.

I talked to my mom again and finally ordered food. Thai food, my comfort food.

Around 5, I responded to texts from Brooke and ultimately agreed to see a movie with her. I was still sore but figured I could get ice and discreetly tuck it under my sweater as needed during the movie.

We met at La Pain Quotidien pre-show and I told her about the biopsy. And we caught up on other things. It was nice to not be so single-minded. This thing has taken over my every thought and action all week. It is hard to think of anything else. All other matters seem unimportant and waiting seems to require my complete attention.

After the movie I came home and before I was too far into my DVR reservoir, I received a call from my dad’s sister. She is currently in radiation treatment and was diagnosed with breast cancer late last year. It was good to talk to her. She is strong. She takes action and she is upbeat. She gave me perspective. We talked for about an hour and I hung up emboldened. But also more convinced that the worst is just there, on the horizon waiting for me.

Another round of calls to my mom, my sister and my brother who was up late working, facing a long night of working. He was quiet and serious. He thanked me for telling him but I questioned whether it was the right thing. I could have spared him this.

I made a list of who I would tell if it is bad news. I quickly amassed a list of 40 and looking at it now, I know there are missing people. People who will support me and love me and pray for me and just be there.

I feel right now I am preparing for battle. Gathering my armor, itemizing my resources, counting my troops.

I want to run a half-marathon with Erin in Seattle in June.

I want to run the Red Rock Relay team I am co-captaining with Amanda in September.

I want to go on my Patagonia vacation.

I want to enjoy my summer.

I want to find someone to love me.

I want to retain the hope of having children.

I want to keep my breasts.

I don’t want to spend the next year with cancer.

But if I do. . . .

I will FIGHT.

I will ask for help.

I will still work.

I will reach out to friends.

I won’t push people away.

I will remain as active as I am allowed.

I will go to Patagonia.

I will throw a party when it is over.

I will shave my head if I have to lose my hair.

I will not be defeated.

I will keep a warrior’s attitude.

This will be a battle story.

I have endured hard things. I can get through this.

to freeze or not to freeze

2011-05-09T15:29:00.000-04:00

I have one significant fear: jumping into water.

I don't know the genesis of this fear or when it started. It wasn't there when I was young because I remember jumping (not diving) off the high dive at the pool and loving the rush of adrenaline as I climbed up the ladder.

But something changed and when I was on a boat for my first snorkeling trip at the Great Barrier Reef, I panicked when I was told to jump off the boat. Maybe it was the open ocean that was so startling but I remember standing at the edge of the boat after everyone else had jumped in talking myself into it.

Eventually I did it and was fine. Better than fine. I was snorkeling at the Great Barrier Reef! It was amazing!

Later that same year I went to Lake Powell with some friends and somehow got talked into going cliff jumping. I should rephrase that. I doubt anyone had to talk me into hiking up to the top of that cliff which in my memory was about 20 feet high. One friend opted out from the beginning and no one tried to convince her to jump off a cliff. But I guess I've always been one of those would have to respond in the affirmative to the old question of "if all your friends are jumping off a cliff would you do it?" But only if it looked like fun and was kind of daring.

Once at the top of the steep red cliff peering over the ege at the water so far below I had second thoughts. My stomach twisted up into itself and I think my friends questioned our advenutre as well. We all stood there offering the first jump to each other. I believe there were four of us - Michele, her boyfriend at the time (although maybe they weren't dating yet) and his 14-year old brother. I remember the brother because he was the one that just ran and jumped off that cliff leaving the rest of us to feel lame for being scared.

Eventually Michele and I screwed up the courage to do it. I don't remember which of us jumped first or if we ran and jumped off that cliff together. The part I remember is the falling, falling, falling.

My eyes were squeezed shut and I was holding my nose and pointing my toes prepared for impact.

The fall took forever and I remember wondering where the water was.

I must have looked down to check when that thought floated through my head because as soon as I thought it, I smacked the water.

I swam to the surface with my face stinging and Michele asked me where the blood was coming from. Turns out I had smacked my face on the water and torn that little flap of skin that holds your lip to your gums.

All weekend I have had that sensation of falling through the air. Friday I was at the top of a cliff not really sure how I ended up there and by the time I finished a particularly long appointment at a fertility clinic I felt like I had jumped off the edge and am now falling through space, trying not to repeat my mistake of looking down for the water for fear of being smacked in the face again.

One of the many, many things that never crossed my mind prior to being diagnosed with breast cancer a mere 11 days ago is what efforts I would make to preserve my fertility.

As a 35-year old single woman I have definitely thought about my fertility, even worried about it. The topic comes up often among women my age whether they are trying to have a baby, worried they may not be able to have a baby if they decide to later or reassuring one another about how many women they know who are able to have children in their late 30s and into their early 40s. There are also the statistics that are thrown at us in the media about women's eggs shriveling up the older they get. I vividly recall a ridiculous anecdote in which a man my aunt was potentially being lined up with told her something to the effect that her eggs were too old for him to date her. Even for a first date. Absurd but true.

In many ways I thought I was at peace with the idea that a) I might never get married and b) I may never have children. I was mostly okay with these two things because they were still very contingent and accepting that they might never happen but could still potentially happen allows me to be more content with where I am in my life now rather than yearning pointlessly for something I cannot necessarily control.

However, cancer changed some things.

At my first appointment with the breast surgeon all of ten days and a liftime ago one of the big points that stuck out to me as my friend and I walked out of his office was that because my cancer is estrogen and progesterine positive, I would be given a hormone supressing drug for five years after my treatment that would put me in a menopausal state. In five years I will be closing in on 41.

Sitting in another waiting room that morning my friend reassured me that I could just freeze some eggs. This is New York afterall and it was not a foreign concept by any means. In fact, I remember having a conversation a few years ago wherein I was joking about how one would bring up eggs on ice to a potential partner: "oh, right, I may be nearing 40 but no worries, I planned ahead and had my eggs iced just for this occasion."

As I moved through the process of calling friends and family I was given offers to carry a child for me and one friend even offered up her husband's sperm if needed. She pointed out how cute her kids are in support. Like with all of this overwhelming volume if information, the jokes helped neutralize it all.

And last week when I met with my oncologist for the first time, a few of my 52 questions were dedicated to fertility preservation. Since I have a hormone receptive cancer, any fertility treatments hold two risks: 1) delay in treatment and 2) potential for fueling the growth of my tumor. While my first instinct is to kill this thing inside me immediately, I greatly appreciated her telling me that if she was in my position, she would do everything she could to preserve her fertility.

Ultimately, I agree. Nothing is guaranteed but I have to do everything I can now so I don't regret it later.

She explained that we wouldn't delay anything. If fertility treatment took more than a few weeks then she advised me to get surgery first and then chemotherapy. She gave me a couple of names of reproductive endocrinologists and by noon on Wednesday I had an appointment for Friday afternoon.

I spent Thursday reading everything I could find about fertility preservation for cancer patients online. There isn't a lot out there. I also endured what I fear will be the first of many ridiculous conversations with my insurance company wherein the girl (she sounded very young) on the other end of the phone left me waiting for an extended amount of time while she looked up "fertility preservation" only to return to me and report that she couldn't find anything on "infertility preservation." I tried to suppress laughter as I explained that infertility preservation really isn't a thing - unless you count vasectomies and hysterectomies.

On Thursday I also started my period.

Now normally I wouldn't tell you something like that. Even I have some limits on what I will share on the internet but this turned out to be extremely fortuitous because the fertility treatments are started on the third day of your period.

I spent Friday morning with a genetic counselor and then went to the fertility clinic for a 1 pm appointment. My friend went with me and out of all of the doctor appointments I've been through in the past few weeks this is the one where I needed someone the most. We spent some time with the doctor where he re-explained everything I had been reading about and went into more detail and basically complicated my decision process.

Way back on Monday the idea of freezing my eggs was so overwhelming, I finally broke down and cried. Cancer is just not as daunting as the idea of prematurely losing my fertility. If I even have any to begin with! I'm older, there is a history of infertility in my family and honestly, I may never meet someone with whom I want to have a child so all of this time and money and delay could be for nothing.

By Friday I was comfortable with my new vocabulary which now includes oocyte cryopreservation (egg freezing). However, in my studies and discussions with doctors I learned that eggs don't freeze as well as embryos since they contain more water and are more suseptible to ice crystals aka freezer burn (my term). So now the question is not necessarily whether I am going to move forward with the freezing process but what will I freeze? Egg or embryo?

After a grueling four and a half hours of information overload at the fertility clinic that included an ultrasound confirming that yes, I do indeed have eggs in there and a mini class with a nurse to teach me how to give myself injections and a tearful goodbye when my friend had to leave after two hours, I was done. I was out on the sidewalk on the Upper East Side clutching a folder for the egg option and a folder for the embryo option and a bag full of sample meds. Dazed I made my way to the pharmacy where the doctor had sent my prescription for all of the drugs I would need to start taking the next day.

I felt so very fragile sitting on that bench as people went about their seemingly normal routines around me. I was in a free fall.

When my name was finally called I barely blinked at the total of $999. I was warned of the cost at the clinic and knew insurance wouldn't cover it and with everything else moving so fast I didn't feel there was much I could do about it anyway. But what makes me angry is thinking about those women who find themselves in my position who do not have the means to swipe their card and pay $999 for drugs to protect their ability to have children once cancer was out of the way. This is not something one should have to worry about on top of cancer.

And $999 is only a drop in the bucket of the costs associated with this process. On Friday I was handed an application for the Lance Armstrong Live Strong Foundation grant to cover part of the treatment. I have not even looked into that because there is no reason I should qualify for such a grant. I am lucky enough to have saved a significant amount of money and have a well paying job that allows me to cover the expenses. I don't have to make this decision based on finances. But what of those who do? I cannot even imagine. I spent this morning on the phone with the clinic finance department repeating the costs which I was told on Friday but have been lost in the blur of information. Tomorrow I have to pay another $10,000+ for the cycle of treatment. Then another $1,000 each year for storage. How do other women do this?

To add to the stress and bizarre nature of the whole thing, I spent Saturday night reviewing sperm bank websites. That's right, you can order up some sperm right here on the internet. I find these websites eerily similar to dating websites but without the mocked up photos and the ALL CAPS writing. One can run searches by hair color, eye color, ethnicity, religion (which seems odd to me because that isn't necessarily something a baby is born with, right?), height and weight. Some sites list baffling celebrity look-alike photos and others include baby photos if you pay an extra fee. The staff writes a little essay impression of the donor and one site has recordings of the donor answering some ridiculous question like "what is your favorite holiday."

I am one of the few single women I know who has no interest in online dating so shopping for a sperm donor as a potential biological father to a potential child I may or may not be able to or want to have in five years . . . so strange. It doesn't help that I flat out do not have a "type" and no, I am not going to date this donor but I cannot get away from the idea that I should be attracted to the donor because those are the characteristics I would want for my hypothetical future children, right?

After deciding browsing sperm banks was a bit too much for me, on Saturday evening I started the injections. Why not add a nice big dose of hormones to the process? I was so nervous I was going to do it wrong and so worried it would hurt that I ended up pinching the inch of skin on my stomach for the injection so tightly that I didn't even feel the needle when I poked it in! I did it! And it didn't hurt. Success.

My heart goes out to women who have to do this multiple times in an effort to conceive. It is an overwhelming, expensive and daunting process with absolutely no guarantees. I won't get any guarantees either and won't know for years if my efforts will allow me to have a child or if I will ever have to break the news to a potential suitor that - oh, don't worry about that cancer thing, I put some eggs on ice for later. Or possibly, hey, no worries, I chose a dark haired-dark-eyed-6'2"-Mormon-Irish-Guatemalan sperm donor who values family and studied physics back in 2011 and froze some embryos. We're all good.

The Discovery

2011-05-05T21:52:00.002-04:00

[I wrote the below way back on April 21st, it is about finding the lump and my first mammogram, I will post what I wrote about the biopsy in another post.]

I am bad at sharing hard things. I carry them around in my heart until they burst. I may reach out and share the surface level items. The part that isn't difficult to spread around because it is easily brushed aside as no big deal but it is hard for me to admit when something is too heavy to conceive - even to myself. I am just too damn independent. I also don't know when to share the burden. Do I share early when it is stressful to imagine all the what ifs or do I hold back until it is time to celebrate because it all turned out to be nothing? Or wait until there is something real to worry about and then disclose and ask for support? Will I be able to ask for support even then?

So here is the story of my week. I want to capture it now while I'm in the midst of it. Not because I'm freaking out or scared or even particularly worried but because I want to remember how this feels - in the middle. Not at the end. Maybe I'll share this when I know the outcome.

On Tuesday I went to my annual not-very-fun-but-necessary gynecological exam. The last months have been especially chaotic for work and this is the first week that hasn't been jam packed. Although I still have a lot on my plate for a closing next week. I went to the exam worried about a pesky yeast infection, thinking that was the worst of my concerns and mildly embarrassed to discuss it with my doctor since I've never had this sort of issue.

Soon I wasn't so worried about that and it became more of an afterthought because during the very routine breast exam she found a lump. A not so insignificant lump. A lump that once located and felt and compared with the non-lump holding right breast feels big and unmistakable and makes me wonder how I never noticed before. Except, maybe I have noticed it before and wondered and brushed it off as no big deal. But then again, how often do I really feel my own breasts? Or, for that matter, how often does ANYONE feel my breasts since I live a rather celibate lifestyle.

Anyway, my doctor is amazing. She is by far the best gyno I've had and the reason I have been seeing her for about six years and the reason half my friends see her as well. She reassured me but also instructed me to get a mammogram and ultrasound. She explained that a lump doesn't mean cancer since there are a number of other things it could be that are no big deal but we should check to be sure. That was Tuesday, April 19th.

I made an appointment with a radiation center for the next day. The location closest to my office didn't have any openings until next week but the one closer to my house did so I signed up for a lunchtime slot thinking I could just be absent from my desk for a long lunch. That turned out to be wishful thinking. I arrived at 1230 and was immediately informed my doctor had checked the wrong box on the form and they needed to call her to get the right box checked. That took a couple of calls from them and then me before the properly checked box form was faxed over. By then it was after 1 pm. It was another 30-45 minutes before my name was called so I could remove my top and change into a pink gown and sit in a second waiting room. Which was very cold. And then they kicked the air conditioning on and it became freezing. I waited and waited, half dressed, freezing and reading my book. But distracted. After chatting with another woman for a bit about the wait my name was finally called and it was my turn for my first ever mammogram.

My technician was an older Russian woman with a thick accent. In the small room with the machine whirring it was difficult to hear and understand her as she quickly repeated what I assume was her usual speech. I asked her to repeat herself several times to make sure I was hearing her hurried instructions correctly. Within moments she was sizing up my breasts, strapping a lead apron around my waist and putting pink floral band-aid strips with rhinestone-like beads in the middle over my nipples and asking me to point out the lump. She felt around a bit and I questioned whether it was really there and then she marked it with another pink strip before instructing me on how to cozy up to the giant machine. She moved the shelf up and down and manipulated my breasts into just the right spot to be pressed like a panini sandwich between the plastic plates. I held my breath and squeezed my eyes shut while she told me to hold still as she moved behind the small wall to take the xray before returning to re-situate me with the machine. The side views were especially difficult and she had to tell me several times to loosen my grip on the handle she told me to hold. I thought it was there for squeezing but apparently only for positioning. Oh, well. The last position to get a good view of my lump was especially contorted and gave me a good view as my left boob was squished so flat I feared it may never plump back out to its normal size. I held my breath and once again squeezed my eyes shut and tried not to death grip the machine as she took one last xray.

Then I was dismissed back to the dreaded waiting room to wait for my next test.

For the most part the other women in the waiting area with their matching pink gowns and varied pants, skirts and shoes exposed on the bottom half were significantly older than me. They all seemed impatient or nervous or cold to varying degrees. Some were prepared with scarves or took the nurses' suggestion of utilizing the blankets scattered around the room. As new women came in, you could see the bewilderment of the novices as they were given instruction to strip up the top half of their clothing and don the pink gown with the gaping arm holes. Those who seemed more accustomed to the process bee-lined for their favored changing room and appeared prepped for the long wait. Others asked questions and took the wipes as they were instructed to remove deodorant (I read the sheet and hadn't worn any after reminding myself over and over not to put it on in the morning). One blind hispanic woman held onto the arm of her daughter/friend/relative/caretaker and was read to as she waited. She was the most careless with her gown and tied it loosely or not at all when she returned to the waiting room, her breasts covered but clearly drooping with her age.

One be-gowned woman was still in the waiting area after her procedures when a startled nurse/technician informed her she was all clear and free to leave. Startled, she responded that she wasn't used to that news and grabbed a tissue. She rushed out the door momentarily in confusion as my own eyes teared up assuming she was a cancer survivor before she hurried back, remembering the need to change back into her street clothes. She was still composing herself when she emerged from the changing room and I wanted to say congratulations but with the room so silent I just smiled with tears glistening in my eyes.

There was one woman significantly younger than me who I first saw in the initial waiting room with a friend. I overheard a piece of their conversation where one remarked to the other "how does it feel to be 20?" Clearly, the patient was not yet out of her teens. Later, I saw a woman who was my age or younger who seemed well prepared for the cold and accustomed to the place with her large shawl. I wondered about their stories. Is this new to you? Is this routine? Do you have a diagnosis or are you, like me, maintaining an outward appearance of calm and no-big-deal, just another appointment while internally your mind considers what cancer might mean to your life, your plans. Are others contemplating who and when they might tell people. Are they drafting an email in their heads of how to ask for prayers/support/love/thoughts and rejecting pity if the C word is ever used? Are they scared? Am I scared? Should I be scared? Is there a part of me that almost nearly, not really craves the diagnosis? Why would I ever want that? Even though I don't actually want it, why am I so curious about it?

I continued to read and selected a seat further away from the blast of cold air.

I was soon called back a second time by another Eastern European sounding accented technician for my ultrasound. I was instructed to lie down in the most awkward way on the table, half on my back, half on my side so she could get a good view of my left breast - my left arm draped over my head. This was fine initially but as the technician took more and more views and the scan went on, I fidgeted and longed to ask to just put my arm somewhere else. When she first squirted the gel stuff onto my breast I was surprised how it felt. When I had an echocardiogram years ago it was cold, this time I almost didn't feel it, it was warm. I was again asked to point out my lump since the pink strip marking its spot had vanished although my rhinestone nipple pasties were still in tact. Too bad I didn't have anyone waiting at home because how funny would that be as a post-mammogram surprise? Anyway, I strained to watch the screen as she moved the wand around and around my left breast, ignoring the right completely. I watched her concentrate on a menacing looking black blob but didn't ask her anything since my past experience with technicians from my echo is the only information they will give you will likely be wrong.

A knock came on the door and the radiologist asked to come in with a resident - the only male I encountered at the center. In a whirl of confusion they started discussing biopsies and measuring the black blobs and distance and she instructed the technician to search the lymph nodes in my arm pit and what do you know, there is another small black blob to be measured and recorded and viewed in color and without. I squirmed and the doctor asked if I had any questions. I said "a ton!" and she said she may be able to answer a few and paused, "is this your first time?" she asked and when I said yes she responded "of course, you are only 35." She made some comment about not being god for which I forget the context and told me they would assist me in scheduling the biopsy right away and asked if I had a breast surgeon. Um, no. Why would I have a breast surgeon? Should I have a breast surgeon? What the hell are you seeing and what do you know here? My questions were more simple and basic and I was outwardly calm and mostly focused on being allowed to put that left arm down so I didn't ask much else but I also did not care about my boob hanging out for the small audience. The doctor instructed the technician on what else to do and apologized for interrupting and informed me that they would walk me through all of the next steps afterwards.

I wondered if she came in because of what she saw on my mammogram. She clearly knew what was there before she barged in. She seemed concerned but was that her usual manner? Did she treat all lumps the same? Should I be worried? So many questions. And what is all this about a breast surgeon? Is that what they are really called? Am I being hurried along some crazy path towards surgery?

I needed a moment.

I was soon given one.

I was told I could wipe off the excessive amount of gel from my breast and arm pit and return to the waiting area and change out of the gown and someone named Melinda would collect me and make all the necessary appointments.

This time, feeling odd fully dressed among the pink-gowned women, I waited without reading. I was nervous. I pushed the rising panic down by texting my mom that I would be calling shortly. I also emailed a friend who is an oncology pharmacist to see if he could get a referral for any breast surgeons in NYC. I didn't say it was for me and he kindly didn't ask why when he responded later that afternoon. I'm sure he has questions and if this turns out to be something, I will definitely have questions for him. Perhaps too many.

I sat and waited. Watching the mostly familiar faces of the other women who I'd spent the afternoon with wondering if they could tell I was different now. Not just because I was in my regular clothes but perhaps because my face revealed my inner turmoil. I played some words with friends on my phone and the freak out stage passed. Nothing to worry about right now. Just more tests to endure.

And more waiting.

The woman named Melinda who was the only person I had seen not in hospital garb mangled my name and I stood up and followed her through the maze of hallways to a tiny little office. I noted her title of "breast imaging coordinator" and wondered what type of credentials were behind that title. She answered some questions and confirmed that yes, there are three lumps and scheduled my biopsy for Friday morning. Good, only one day to wait. She instructed me not to go to work afterward and was soon on the phone with a breast surgeon making an appointment for the following week. I waited. When she discovered her favored surgeon did not take my insurance she asked if I wanted to go out-of-network. I declined. For a consultation for what could be absolutely nothing, no, I will stay in my network thank you very much. She made an appointment with a second surgeon in the same office who she reassured me was also excellent but told me he isn't as deliberate with his patients as the first doctor and will answer all questions but just doesn't take as much time to explain things. Hmmm, that could be good or bad I guess. But I made the appointment for the following Friday already dreading the week long wait between biopsy and results.

And then I was set free. I walked back to work first talking to my dad, then my mom. I worked late to make up for the fact that I returned to the office at 4 and ate my lunch at my desk as I continued my conversation with my mom behind closed doors. I spent another hour reading about biopsies online preparing myself for Friday and consoled myself with the happy statistic that only 20% of biopsy tests return positive for cancer. I have an 80% chance of a benign result. Excellent.

Since Friday is Good Friday and notoriously empty in my office, I don't feel my absence will stand out since the office will likely be pretty quiet. It already is today. It has been difficult to work. I am just distracted wanting to know is it or isn't it? Once I know, I feel I can move on either fighting it or shrugging it off as a precautionary lesson. I still haven't spoken with my doctor about the results although I called this morning. I haven't eaten lunch and didn't have an actual breakfast. I could not peel myself out of bed this morning and wanted to stay there all day. I assume this is my stress poking out of my psyche. My mom is worried about me going to the biopsy alone but honestly, I think I would be more stressed and worked up if I had someone there with me. The clinic is two blocks from my apartment and although one online thing I read indicated some people get a valium, I assume I will only have local numbing for the needles. I won't go to work but will likely indulge in some couch time for the afternoon.

I waffle back and forth between wishing I had weekend plans and looking forward to a quiet weekend to clean my house and read and relax. Friends would be a distraction but I fear I will unburden myself and talk about it more than necessary if I'm around anyone. I have brunch plans Sunday but otherwise nothing. I just need to make it through another week and then I will definitely know which path I'm heading down.

It seems strange but I think I will be most upset if I cant' run my half marathon in June. I told Erin this last night and she said she will run anyway. I feel like either way I will go to Seattle and run or walk or crawl. If the result is cancer I will be fighting.