I realize it has been a long time since I posted. I will just blame chemo and be honest that the last couple of months have been the worst - not just physically but mentally. I have posted a couple of updates I sent to my family and friends that I failed to cross-post here for those of you kind enough to still be checking on me and who want to know the ins and outs of the past couple of months. Below is the update I sent out today. As I pulled up those posts I realized there are many other things I've been wanting to capture in words for myself that I have failed to write about so maybe as I gain more energy and as I pull myself into a more regular routine I will fill in the gaps. For now, here is the latest on where I am at today - three weeks beyond my last chemo treatment.
I am now just over three weeks past my last chemo treatment and it is starting to sink in that I am done. I have had a lot of post-chemo doctor's appointments and follow-ups and I feel like there is so much I want to share that I don't know where to start. So I will start with some really good news.
Yesterday I returned to the same radiology clinic for a mammogram where I began this journey back in April. It was a little surreal to be sitting in the waiting room filling out paperwork and remembering the thoughts and fears and concerns I had back then. This time I knew I could only get neutral or good news. The lump that led me to that first mammogram four months ago is no longer palpable which means chemo shrunk it, by how much we didn't know but all the doctors I've been seeing recently (my oncologist, my surgeon, the radiation oncologist I met a couple of weeks ago and her physician's assistant) have remarked on my excellent clinical response to chemotherapy. Plus, there was no unknown. I knew what was coming. Although I must say I felt conspicuous in that waiting room. Instead of being surrounded by other cancer patients in various stages of treatment, I was waiting with women whose worst outcome for the day could be to end up like me. I felt like a reminder sitting there with my bald head. After I was called into the second waiting room where I had to change into a pink gown and sit in a nearly refridgerated room I pulled out a wrap to keep myself warm. An older woman commented that I was smart to bring something since it was so cold and I said I learned the hard way as I was unprepared last time. I could tell women wanted to talk to me, ask me questions, make comments. Another woman came out of the changing room in her street clothes and leaned over to tell me she was a three year survivor and asked me how I was doing. Another woman then joined the conversation indicating she was a fifteen year survivor and we swapped treatment stories and chemo side effects and they left me with promises of returning hair and eye lashes. My wait felt much shorter than last time and before I knew it I was back in the mammogram room with a technician wrapping a lead apron around my waist and positioning my left breast between the plexiglass plates and squeezing it in the vice grip. I held my breath and gripped the bar on the machine just as I did last time but it felt like a different view into my future than that first one. Rather than a glimpse at being the first step towards an altered world I envisioned this as a regular checkup I will be doing for the rest of my life to ensure I am never at this point again. Before long I was back in the waiting room waiting for my name to be called for my ultrasound. The ultrasound was also quick and the technician dismissed me without having a doctor barge in and scare me with details of biopsies and surgeons and closer looks at my lymph nodes. No, this time I asked to see the doctor before I left. I wanted to know for myself what they saw in those images. When the doctor came in he was difficult to understand through a thick accent and seemd a bit dismissive and unconcerned. I asked if the tumor had shrunk and by how much. He didn't appear excited to inform me that it wasn't visible on the mammogram (YAY!) and that on the ultrasound it had shrunk to a small "nodule" as he put it. Why he couldn't be more enthusiastic about this excellent news, I do not know, but I was excited. I asked him a few more questions to ensure I was hearing him correctly and he said I still needed to see my surgeon even with the near disappearance of the tumor. I agreed and told him my surgery is scheduled for next week and I wasn't planning on skipping that step.
Then I called my mom. And my dad. And posted the good news on facebook. I realize there is still a "nodule", whatever that means and that there are still several steps to go before I can be declared in remission or cancer free or whatever it is they will say, but I am spreading this good news because it confirms that I made the right decision to start with chemotherapy. All that pain and inconvenience and side effects have accomplished something. It wasn't for naught. Back when this all started, that first time I met with my surgeon and he asked how I felt about starting with chemotherapy and I asked "how should I feel about starting with chemo?" he told me if we could shrink the tumor I would have an easier surgery. And now, just a week away from that step, I'm looking forward to having an easier surgery because that tumor has shrunk - a lot. I saw my surgeon again on my last day of chemo and he walked me through what would happen with the lumpectomy and once again answered all my questions about how I should prepare and what would happen and what might happen and what could go wrong and how will this effect me and while I realize this is still surgery, I think I'm primarily just fascinated at what doctors are able to do. I mean, I know that fluke things can happen but my surgeon is good and he is confident that this will be pretty easy - especially relative to what I've been through. He will remove the sentinal node from my under arm so I will have two incisions but even that he does not believe will hamper or impair me for long and he encourages me to start my daily activities right away. He also encouraged me to start exercising right away and indicated I will be able to run again about a week after surgery.
Of course, I will update everyone on how all of this actually plays out next week since I have definitely learned that things don't always play out in quite the same manner as doctors predict. For example, you may recall that back in early August when I started my taxotere infusions I was told this would be a lighter, easier chemo drug. Unfortunately that was not the case. While it was good in many ways to be on a three week cycle to allow me time to recover, my side effects grew with each treatment to fill that entire three week with a parade of difficult, annoying or distracting issues. Plus, the cumulative effect of all of those chemicals has flat out worn me out and dragged me down. I was tired of organizing my own care, tired of asking, tired of taking, tired of the simplest thing taking so much effort. I was also growing tired of traveling. I gained so much from my first two trips home to Utah that occupied my "good" weeks that I decided to schedule another and then just one more. And now, having just returned from another long weekend in Salt Lake, I have to say I am ready to embrace a life back here in New York City. Each trip boosted me in some way despite the effort it took to get there and back. At the end of September, just before my last treatment, I was able to attend my ten year law school graduation (putting my wig to use for the first and possibly last time), hike (slowly, with many breaks) in the beautiful fall foilage at Guardsman's Pass, attend the homecoming football game at Utah and catch up with family and a few friends. This last trip I helped pull off a surprise 60th birthday party for my mom with a significant portion of our family that included one of my brothers and his one-year old traveling with my from the East Coast as well as her parents and several of her siblings. The surprise was absolutely worth the sacrifice.
But as much as I would love to continue to travel around and catch up with everyone who has supported me along the way, I have to admit that it will likely be a while before I am 100% again. I went for a run this morning in the wind and a light rain and was reminded as I slowly ran through the nearly empty park along the Hudson River that I'm not going to always be on an up and up and up trajectory - I still have bumps in the road and setbacks that might come. So I fell slightly short of my 2-mile goal. For example, a couple of weeks ago I had some side effects cropping up that had never appeared in the entire course of treatment. Despite the fact that I was coping with thrush (a horrible side effect that burns out my taste buds and makes it difficult to impossible to eat), I was extremely bloated and suddenly none of my pants fit. When I finally called the doctor about it I had convinced myself in the middle of the night that my cancer had spread and this was the sign. I was in a bad spot in my head because I was tired of being sick, tired of the ever changing reactions of my body and feeling extremely disconnected from my own life. When I saw my oncologist I had gained five pounds in two weeks - two weeks when I was probably only eating about 800-1,000 calories a day. I broke down in her office and then apologized because I wanted to continue to be strong but didn't know how to keep carrying this burden because I felt like I was past the deadline and it should all be over. She reassured me that this is normal - the bloating we would monitor but the emotional breakdown is often what comes at the end of treatment because I was feeling unhinged from the cycle and schedule of the chemo. While I wanted to celebrate the end and appreciated all the texts, emails and phone calls to celebrate the end of chemo, it didn't feel over when my body was still reacting and it doesn't feel over while I still don't know if I am absolutely done with cancer. Moving on to the next step is a relief but also scary. I consoled myself with research into the next steps. And feeling my body get a little bit stronger each day helps as well, as long as I allow myself plenty of rest.
Another bright light at the end of the tunnel - my hair is coming back. I'm still bald and the growth is not significant but it is happening. The little stubbles of hair that never fell out are growing and when I run my hand over my head I feel longer, softer hairs instead of prickles. Also, there is a little bit of white downy hair that has cropped up. It is most noticeable in the bright sunlight and from what I have read this is a common sign of first hair growth post-chemo. I am baffled that my hair knew to start growing within about two weeks after my last treatment but happy it is ready to move on. The truth is, I'm tired of being bald. Not tired enough to commit to wearing a wig full time but tired of the novelty of it, tired of the effort it takes to coordinate a scarf or hat or something to put on top of my head each day, especially now that the weather is getting cold and instead of protecting from the sun, I need to keep myself warm. But to be honest with you, I think the reason being bald has suddenly become more of a burden, I think it is because I have lost the majority of my eyelashes. I noticed them falling out sometime in September. I'm lucky that I've always had a lot of eyelashes and that my eyebrows have always been something I've needed to tame rather than worry about filling in. I no longer have any bottom eye lashes and my right eye has about 8-10 lashes left while my left has held on a bit more firmly but is pretty thinned out. When I went to my law school reunion last month I had false eyelashes put on and suddenly I realized where my own vanities lie - I suddenly felt like me again. Not because I was wearing a wig, but because I recognized my own eyes. In the morning especially, when my face is often puffy and more often than not I have dark circles under my eyes, I look in the mirror and I miss the healthy version of myself. Lacking eyelashes I feel more like a cancer patient. I don't see any signs of regrowth there and I'm pretty sure I won't feel like myself until I have them back and who knows how long that will be.
Before I close out on this overly long update (but do I really know how to write anything that isn't long-winded?) I should share one more bit of good news. I met with a radiation oncologist a couple of weeks ago and held my breath and crossed my fingers when I told her the timing of my Patagonia trip. I met with her hoping she would accept me into a clinical trial which would cut radiation down from six weeks to one week! I researched and research the brachytherapy hoping I was a candidate but unfortunately, I am not. Since my cancer had advanced into my lymph nodes she could not recommend the newer, less definite form of radiation. So I told her I am planning on being out of the country from December 23rd to January 10th and she pulled out a calendar and started calculating. This was on October 12th, after my mom and sister had booked their flight for my surgery, after I had booked my flight to Utah for my mom's surprise party and for a moment the doctor suggested we move surgery up to the following week (last week) and rush into radiation immediately after a short recovery. My face must have conveyed my concern over this rushed and amended schedule because before I could respond she nixed that plan and said there wasn't any reason we couldn't wait until I return and suggested we have everything else done - a PET scan and a simulation of the radiation so they know exactly where they will radiate - before I leave. I agreed to that plan and will have all of November and December to devote to recovery and building my strength and endurance for the trip. Time I realize I really need to give my body and my mind to recover from week after week of chemicals being pumped into my body. The fight is not yet over and I fear the finish line is being pushed a couple of months into 2012 but my hope is that the worst is behind me.