Monday, February 06, 2012

the longest day

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!

Thursday, January 26, 2012

Radiation Routine

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.

Monday, January 23, 2012

Buenos Aires

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.

Thursday, January 12, 2012

back to reality

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.
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