Some of you already know this from Facebook or PMs, but I wanted to give y'all an update on my adventures with esophageal cancer.
In the thread I just linked, I explained that the standard treatment protocol was simultaneous chemotherapy and radiation therapy, and then assuming the cancer had not spread while that was going on, an esophagectomy.
I had the chemo and radiation in May and June, and hoo boy, those were NOT fun times. I had an allergic reaction to the first chemo regimen they tried and had to switch to a different one. And the chemo/radiation just wiped me out... no energy to do anything, every bad side effect under the sun, felt crappy all the time, etc. etc.
On July 11th I had a post-treatment PET scan, and that scan was promising, suggesting no metastasis and even that the tumor had shrunk substantially. So I was scheduled for the esophagectomy for this past Monday, and my family and I went into the surgery feeling quite upbeat and confident that I had a good chance of beating this cancer. Unfortunately, once my surgeon opened me up, he discovered that the tumor had advanced to the chest wall near the spine and penetrated the lung. Given where it was located against the spine, it could not be removed, and so there was no point in doing the esophagectomy.
Needless to say, this was devastating news, and a review of my remaining options was equally discouraging. My team (radiation oncologist, chemo oncologist, surgeon) were in consensus that any further chemotherapy would at best just buy me a little more time, and I have no interest in pursuing time for time's sake, especially if that time is spent being miserable from chemo side effects. We discussed targeted immunotherapy, but again it was clear that would only buy me time (if it worked at all, and the odds of success were very low) rather than being curative, and the side effects of the immunotherapy are pretty gruesome. Not to mention that it takes 3-4 months of immunotherapy before it starts really having any positive effects at all, and my team was not sure I have that much time left.
In short, I have decided to decline further treatment efforts on the reasoning that I prioritize quality over quantity of time, and I would vastly prefer to spend the limited time I have left building memories with my loved ones, instead of being miserable and in pain from chemo/immunotherapy. I have enrolled in Hospice and am already impressed by how compassionate and efficient they are in their care--they had a nurse at my house within hours of my discharge from the hospital. My main priority is my comfort and pain control, and they are doing a great job of helping me in those concerns. (And here I will give an enthusiastic two thumbs up for fentanyl patches!
My team could not give me a very precise estimate of how much time I have left. This is completely understandable (everybody is different) although also frustrating, and my situation is apparently especially complicated. Based on the typical progression of people with tumors my size and spread, I could have as much as 6-9 months. But part of the tumor is also very close to my aorta, and if it decides to move in that direction, well, it could be bad news within a matter of weeks.
As for the immediate future, well, I am going to concentrate on my family. I also have an Einaudi piece that's about 75% worked up that I am going to try to record for the upcoming quarterly recital. Extending and finishing my streak at #55 seems like a good bucket list item.
Piano and music continue to be sources of great comfort and reward to me, as are friends. This past week has been a whirlwind of emotions, and I have been overwhelmed and touched by how many people, including those from this forum, have reached out to me and my family. I may not have the time/energy to respond individually to messages or emails you send me, but I read and appreciate each and every one.