Headed to the doctor yesterday, twice
Yesterday I saw both my primary care physician and my palliative care physician. I wanted to bring them up to date on our NIH adventures, and also seek help for this stupid persistent cough, as well as discuss my general fatigue and lassitude. They were both productive consultations. Amusingly, each doctor had a very different approach to the cough. My palliative care doctor was most concerned with symptom reduction, prescribing Tessalon Perles. My primary was most concerned with addressing the root cause, and ordered a chest x-ray and an Albuterol inhaler. We eventually determined that these medications played well together, and I’ve gotten permission from my NIH doctors to proceed with treatment.
Back to NIH on 3/4
I have my new schedule schedule in hand. I’m flying back to NIH on Tuesday, 3/4. I’ll check into the hospital that evening. Wednesday 3/5 I have a CT scan mid-morning, and two MRIs that evening. One for my brain, the other for abdomen. MRIs are a pain the neck, though not especially painful in an objective sense. Having two in a row is going to be a real treat. Thursday 3/6 I am having my central line put in, a dual-lumen catheter that I believe will have a left subclavian placement. I suspect that will be rather painful in an objective sense. Friday 3/7 I commence seven straight days of kamikaze chemotherapy. (I’ve been asked by my doctors to gain some weight before I come back, which given that I am already medically obese is a strong commentary on what they expect to happen during treatment.) Friday 3/14, I commence the TIL cell infusions. At that point, the schedule becomes unpredictable due to possible variables in my response both to the infusion and afterwards as I recover from being profoundly immunocompromised.
So game on.
Will I be too sick to resume treatment?
Anent the above items, one of the things I worry about is whether I will be too sick to resume treatment. I have felt terrible this last week and half, in some sense worse than I felt even in the immediately post-operative period. My palliative care doctor thinks it’s not unreasonable for me to expect to get better in the next two weeks before I return to NIH, but at this point in my disease progression, nothing is certain. All I know is that there will have been an enormous amount of time, trouble and money spent on not much outcome if I wash out at this next step.
I’m pretty sure that’s an emotional fear on my part rather than a reasonable clinical expectation. Nonetheless, it’s real and powerful.
On the plus side, I feel better this morning than I have in the better part of two weeks. So maybe progress is being made.
Weird ideas about living through my own death
Even now, as I feel my body winding down and my mind wandering further and further away, I still marvel at being alive. Sometimes an odd fantasy occurs to me. It’s actually a trope I’ve seen in science fiction now and again, a form of solipsism. In effect, sometime I wonder if I cannot experience my own death, or perhaps I’m already deep in the midst of the experience, while my mind continues to create a simulacrum of reality around me. Logically, I’d eventually be the last man on the empty Earth if this were somehow true.
I don’t think it’s an escapist fantasy on my part. I’m escaping nothing. More of a weird fillip of my literary brain. Like my occasional expectation of a deus ex machine sweeping in at the last moment and saving me from the grave. An odd twinge in my thinking, to say the least.