For several months, we have been uncertain about my health. On the one hand, the two most recent CT scans showed no tumour growth or new metastases, suggesting that immunotherapy successfully held cancer at bay. On the other hand, I was experiencing increasing throat pain, coughing, and swelling of my mouth and tongue. These symptoms might have been caused by tumour growth or the accumulation of side effects of the immunotherapeutic drug.
On April 11th, I met with a palliative care doctor to see how to relieve the pain. I described my experience of increasing background throat pain, punctuated by sudden attacks of acute pain radiating from my throat to my inner ears and head. He thought this could be the pressure of a growing tumour against the major nerve that serves the tongue, which runs close to the tumour site.
Two days later, my wife and I had an appointment with my radiation oncologist to examine the tumour site. He used a long, thin, flexible cable with a tiny video camera and an LED at one end. The other end was plugged into a large video monitor. He inserted the cable into my nostril, pushed it through my sinus passage, and down my throat. It’s uncomfortable but not as bad as it sounds. I’ve done this twice before. The first time was just before I started radiation treatment. The tumour was a surprisingly large reddish hemisphere. I saw it again at the two-month follow-up appointment after the end of radiation, by which time it had shrunk to a barely visible lump.
What we saw now was horror.
A large, irregular gray mass covered the root of my tongue. It was as if a fungus had colonized the back of my mouth. We were silent; no one expected this. I believe I spoke first, saying, “What is that?” Either my wife (a physician) or the oncologist answered: “Necrotic throat tissue, killed by the tumour.” The oncologist remarked, “CT scans are often misleading.” I wasn’t looking at his face, but I imagined he was rolling his eyes. Indeed, my CT scans have been consistently unreliable. Contrary to what the scans had indicated, the tumour was growing. Moreover, the palliative care doctor had been right; the pressure of the tumour on a cranial nerve was the source of my pain.
The upshot is that I am now in a second cancer recurrence. As the days passed, my pain and coughing continued to increase. My tongue became so swollen that I could not speak or eat for several days. My physicians rallied to my side. My palliative care doctor switched my pain medication to a fentanyl patch, which controlled my pain. My medical oncologist prescribed steroids to reduce the swelling of my tongue. I’ve recovered most of my voice and can now eat a few soft foods. It has made a world of difference.
My medical oncologist stopped my immunotherapy; cancer had defeated it. I am now on a ‘palliative’ chemotherapy protocol, giving me a 40% chance at more time but no chance of a cure. Every three weeks, I will get a 5-hour infusion of drugs that may shrink the tumour. I’ve had the first infusion: the side effects are fatigue and malaise, but not nausea. There may be more side effects to come, but so far, so good.
I’m slowly recovering from all of this and exploring the limits of this new cancer stage. The most striking difference is that, once again, my doctors tell me I am dying, although they are careful not to give me a definite time. This could be a mistake: everything in cancer is uncertain. But this is likely to be the beginning of the end.
So now I need to triage my projects again and choose something I can do well to finish in good form. I wish I could do more, but I am undaunted. I can’t defeat cancer, but I think I can beat death. By this, I mean I will continue to affirm life and live my best life to the end.
I truly admire your spirit. God bless you.
God, I'm so sorry, Bill. May there be yet another turn.