high dose round 2

I am sitting in the exit row, flying back across this vast country, hopefully doing this stretch for the last time. We are on our way back to Indianapolis, after an absolutely essential break in Palo Alto. It was not the break that I had imagined: I had hoped to leave it all behind, to relegate all of the unpleasantness to the time when I was “working” on things in Indiana, and to have a real vacation, unfettered by side effects. Coming from as low as I had been, though, this was of course wishful thinking. Obviously, I immensely enjoyed being home, relaxing outslde, walking around, eating (and appreciating!) wonderful food, sleeping in my own bed for as long as I wanted without being awoken by nurses or alarm clocks, seeing friends and being able to hug them, having conversations without the distracting smell of the hospital seeping out of my pores, and generally participating in the big wide world out there. But it was actually less of a vacation than a wonderful time and place to recuperate. In the grand scheme of things I surely bounced back quickly, but it has felt agonizingly slow from the inside. I spent way more time lying down than I expected. Ten days later, many of the symptoms I described last time are still present – the blotch in the middle of my visual field still makes reading slow, the neuropathy in my feet makes a short walk around the block feel like I have been running barefoot on gravel, and the combination of the dissonant tones constantly screaming in my head with the perception that everyone is only voicing 75% of the words in each sentence makes conversation require eye contact, focus, and repetition.

The prospect of even more damage being done by the next dose that I will be getting, starting tomorrow, is very scary. I know that hearing aids have gotten better over the years. I know that many of my symptoms will diminish in severity, and may even disappear entirely. For instance, my sense of taste has completely returned! But projecting in to the future, the route I had laid out for myself was ambitious enough without factoring in these and other possible handicaps, and there are moments when I can’t help but allow doubt to creep in from the dark corners of my mind. I know that lots of people go through life much more incapacitated than I will be, no matter how bad side effects from chemo get, and no matter how extreme a surgery I may have to undergo. But contemplating someone else’s disability is diffferent from thinking about my own. It turns out that not only is sympathy really not the same as empathy, but that being able to understand what it is like to be in someone else’s shoes doesn’t mean that I have figured out how to tie my own.

For some reason, this second and final round of high dose chemo with stem cell transplant is supposed to be easier to get through than the first one. Maybe it’s because there are fewer unknowns, maybe because the whole process will be a few days shorter because we have already collected enough stem cells and so don’t have to repeat that procedure, or maybe it’s simply because I know that no matter what the outcome, I will not be doing this again. In any case, despite the tone of this entry, I am heading into this feeling (relatively) strong, energetic, and optimistic. There is so much water under the bridge at this point that there is no way to see it other than just another ripple that will crest, break, and move on.