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!
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.