There are some developments regarding my cancer treatment, and others regarding my emotional well-being. I thought I’d offer an update on both, and on how they relate.
Starting with the physical stuff, readers will recall that my tumour was deemed inoperable because, despite two rounds of chemo and one of radiation over the fall and winter, it remained intertwined with my aorta. The next phase, which began last week, is a combination of those chemo drugs that seemed to help previously, with immunotherapy. The latter was only recently approved by Health Canada for my kind of cancer, so it’s quite new.
Immunotherapy is a bit of medical magic, and I understand only the basics, but I’ll try to explain in simplified terms. Every successful cancer has a means to defeat the body’s immune system — that’s why they don’t get killed off immediately. There are about half a dozen strategies that cancers have developed, but they all result in the immune system mostly leaving the tumour alone. In immunotherapy, the medical team takes a biopsy of your cancerous growth, analyzes its DNA, and figures out how it is tricking the body’s immune system. They then develop and deploy a sort of intravenous vaccine which tells your body: “Don’t be tricked. The material with this DNA sequence really is dangerous. Kill it”. The immune system, thus supercharged, then attacks the cancer.
There’s a massive range of potential outcomes, we’ve been told. None is individually probable. They run the gamut from:
a) the immunotherapy is so successful that surgery becomes viable after all, the surgical team can resect the tumour, and I am cured
to
z) the immune system goes haywire and starts attacking vital organs (the liver, the pancreas), thereby shuffling me off this mortal coil in short order.
As best I can make out, the likeliest outcome is that the drug cocktail slows down the progress of the disease; meanwhile, I experience mild, tolerable side-effects; such that I can continue to receive chemo-plus-immunotherapy as treatment, every few weeks or so, for the rest of my days.
How am I feeling about all this? Not good.
I find the uncertainty extremely difficult to take. I can’t make any kind of reasonable plan for the months ahead. Will I be cured by Fall term? Or will I be dead by Fall term? Will I be so incapacitated by the tumour and the treatment regime that I’m alive but unable to work, travel, etc.? My psychiatrist Dr. D. tells me that the most important step for me here is to do the Buddhist thing and forego control. Let the world unfold, and find joy where I can. That’s excellent advice. But that is so hard for me in particular: when I was a young child, moments of chaos in the family were moments of danger; unsurprisingly then, in adulthood I’ve learned to really relish being in the driver’s seat. Radical acceptance of a lack of control is thus very, very hard.
I also dread the potential of cancer as a chronic illness, such that I never get “back to normal”. That’s a bad enough scenario if the side-effects are mild. It’s a very unhappy scenario if I am left fatigued, nauseous and in pain for the rest of my days, with my usual activities curtailed. In the latter situation, I will face hard choices about how bad my quality of life can become before I decide I’ve simply had enough. Which takes me again to “I can’t plan”: As my friend Samantha pointed out to me, it’s hard to foresee what “too much suffering” will be, because we humans are very adaptable, and what may seem unbearable in the abstract sometimes turns out to be no big deal.
Finally, I don’t know why my bipolar symptoms subsided back in the fall. Now they are back in spades, and I don’t know why they’ve returned. Granted, it does make sense that someone diagnosed with inoperable cancer would sometimes feel sad and frightened. But I feel suicidally sad these days. Desperately sad. And I feel bizarrely frightened – scared in ways that lack rhyme or reason. Yesterday, for instance, I was attending fascinating and entertaining grad student presentations. Suddenly, the fear came rushing over me. I could no longer follow the students’ talks because I was so afraid. That continued for about 45 minutes, then subsided as mysteriously as it had appeared. Two hours later, chatting with the presenters over beer and pizza at the Grad Club, the fear came back. Again, out of nowhere. I had to hurry home.
I’ve stumbled across an analogy that seems to help non-sufferers understand what it’s like to be bizarrely frightened. We all have experienced waking up from a nightmare and continuing to have the sensation-of-fear for a minute or two, even though we know that the scary thing was an illusion. Now imagine being stuck in that unnecessarily fearful state for an hour or so, fully aware that there’s no grounds for it. That’s what it’s like for me several times a day nowadays. I really don’t like it.