Saturday, May 28, 2011

out out damn spot

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.

Thursday, May 26, 2011

Chemo's Eve and Test Run

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.

Tuesday, May 24, 2011

PET/CT Scan

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.

Monday, May 23, 2011

MUGA

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

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.

Monday, May 16, 2011

Weekend Fun

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.

Saturday, May 14, 2011

the birds and the bees . . . and possibly frogs

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.

Friday, May 13, 2011

Biopsy

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.
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