Writing about my cancer journey, I recount important events that affected my care. These events were precipitated by health crises, which means you were reading about when my health was the worst. These posts have generated many letters of support, and I deeply appreciate those letters. But I also owe you an account of where my health is today.
I have oropharyngeal squamous cell carcinoma. Translation: cancer of the surface tissue (squamous cells) at the back of my mouth (the oropharynx). My primary tumour is near the centreline of the root of my tongue. But the diagnosis does not tell you what cancer is like. So here are my symptoms.
I’m frequently tired, so I must take half a day off every two or three days. I have pain at the tumour site and painful lesions in other areas in my mouth and the back of my throat. A kind of thick sputum accumulates in my throat, and it causes frequent coughing fits, and it feels as if someone is abrading the inside of my throat with a rake. Because my mouth and throat are so sensitive, I can only eat soft, unspiced, non-acidic foods. (I now make the best scrambled eggs in North America.) I manage this pain with the disciplined use of Dilaudid and Advil, but it doesn’t go away.
I also have red, inflamed plaques covering the skin on my legs. Smaller patches are on my arms, buttocks, and trunk, and my cheeks are bright red. These patches itch ferociously, like a bad case of poison ivy. Sometimes, I have edema in my neck, meaning my neck swells and the flesh hardens. It’s a bit frightening and looks weird, but it goes away. Finally, I sometimes experience flickering ‘pins and needles’ pains in my hands or feet.
These symptoms are puzzling. How could a tumour in my tongue cause a skin rash? It doesn’t: most of my symptoms have been caused by cancer treatments. The edema and most of the throat pain are the side effects of seven weeks of radiation, which burned the tissue in my neck.
The lesions on my skin and mouth are caused by my immunotherapy. My tumour grew because the cancerous cells evolved a receptor that suppressed the activity of my immune system’s T cells, which normally would kill the cancer cells. The immunotherapeutic drug, pembrolizumab, binds to those tumour cell receptors. The T cells now see the tumour. “Tally ho!” they call as they swoop on the attack. The problem is that pembrolizumab activates my immune system, and the T cells aren’t terribly clever. They abuse other parts of my body and, for example, cause inflammation in my skin. Similarly, pins and needles are a symptom of neuropathy. My immune system attacks my nervous system, starting in my extremities.
Regardless, life is good. The data from other patients with recurrent head and neck cancer say that I should be dead. But that’s a grim benchmark. By any standard, my happiness is well-grounded: I’m enjoying time with my wife, children, and friends. I’m still doing science and writing about cancer.
Are there reasons to worry about the future? Absolutely, but so what? The discipline is to live in the present. There are acts of love and service that I can give and receive today, so let’s make that happen.
What about the tumour itself? I have had two consecutive CT scans that show no growth in the primary or secondary (metastatic) tumours. Nothing in cancer is certain, including CT images, but this is encouraging. It seems that immunotherapy is at least holding cancer at bay. I must be cautious about this. I have walked Cancer Road with several friends who had “clean” images following treatment, only to quickly succumb months or years later. Yet it’s also possible that the immunotherapy has killed the tumours and that the small masses visible in the images are dead tissue. If that’s true, and there are no undetected metastases, then perhaps I am cured
Focusing on the chance of a cure is tempting, but I don’t want to get attached to that hope. I value the life I have today. I could have just six months to live, or I could have 20 years; neither affects the value of this moment. Matthew 6:34 has it just right:
Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.