I’ve just completed a period of intense conferencing. Three in-person conferences in five weeks. Plus a number of Zoom talks on top of it. For me, it was wonderfully social and intellectual. In addition to getting to meet and see work by a new generation of grad students and assistant profs, whom I’d not “discovered” due to the pandemic, I also got to catch up with old friends in Washington DC, Cambridge MA, and Toronto.
It’s been great to see so many people again after the pandemic.
However. I always get questions about my health, and I realize it’s been quite some time since I said anything publicly, and there’s always the possibility of messages getting transformed in a game of telephone, so here’s the latest.
I’m fine! Or “fine.” My cancer is best understood as a chronic illness now. It could get worse; but I could also live indefinitely on my current treatment regimen. My endocrinologist, whom I refer to as “the Terminator” due to his non-touchy-feely-ness which will be evident in the next clause of this sentence, says I will “die of something else.” My oncologist says I’m one of his patients doing the best on my current drug regimen, which is great, though there is always room to fall.
State of the cancer: ideally, not going anywhere
I have a rare form of aggressive papillary thyroid cancer, which has metastasized to my lungs. My thyroid is gone, so there’s that.
On a CT scan, the insides of my lungs still look like “night on Earth” photos. Lots of small spots light up, but I have plenty of lung volume, and the Lenvima has slowed their growth. There are a couple bigger ones, and in my twice-annual CT scans, the radiologist measures their growth in millimetres. My neck remains clear and there are no other mets besides my lungs. There is no surgery or chemo to get rid of this kind of cancer. If a few spots get too big, they can be subjected to external beam radiation. But external beam radiation bites, so I would rather avoid that if possible.
How I’m feeling: “fine”
The irony of this particular chronic illness is that I don’t feel the actual cancer. What I feel is the iatrogenic side effects of my drugs. Fatigue, digestive issues, hand-and-foot syndrome (where the medicine leaks out of my smallest capillaries and causes pain in my hands and feet), occasional dizziness, “interesting” muscle pains, proneness to bleeding and slowness to heal, and very occasionally other weird shit, for which I have a rule: if it doesn’t last a week, it’s not a side-effect. Oh, and I am immunocompromised to some degree, but we don’t know exactly to what degree.
For the most part I have strategies for dealing with all of this, more or less. I sometimes hit a wall in the winter and had to miss band practice after teaching. Even though I wear gloves to cook, play music, do laundry, etc., sometimes I have to work through pain to do something I want to do. I would sometimes have to teach with enough Imodium in me to feel like I’m on recreational drugs. I asked a few introverts how they “do” conferences, and then tried to follow their leads instead of my old practices that amounted to attending absolutely everything all the time.
Chronic illness means you have good days and bad days. It’s not constant like some disabilities can be. I probably “look fine.”
Me, my condition, and the pandemic
This has meant that I have been slower to come out of the pandemic than others; I still tend to mask in crowded public spaces; and as someone who was never good with understanding my own limits, I have a tendency to overdo it and then hit a wall in the fashion of Wile E. Coyote.
This fall was particularly complicated, as McGill forced all teaching staff back into classrooms, immunocompromised or not (this is not in line with Quebec employment law, despite what they say). In my case, I wanted to go back but wasn’t sure how wise it was, so I just took the plunge with masks on. I asked my students to mask and had good compliance, even in my 200-student lecture course (no, 200 people don’t show up every day, at least not after add-drop). This was because the university provided free masks for us to distribute. It was extra work, but it was something.
The struggle for me was actually breaking a number of habits that had built up during the pandemic when I was working from home. I don’t know about you, but work and meetings somehow colonized more time — most notably the time that used to be for commuting — and that meant at the beginning of the term I was unprepared to protect my time the way I needed to in order to actually do my job. With chronic fatigue this is particularly difficult to work out.
At my last meeting with my oncologist, I asked about masking and his sense of where we are at in the pandemic, as I always do. He gave me the go-ahead to start, well, effectively taking more chances and “live my life” as he would say. I am still masking up in crowded public places, public transit, etc., but I’ve also been out to eat a lot as a result of all the recent travel, so the seal has been broken there for sure. For now, I’ll still be careful when I can, but will be a little less careful than I have been. That said, I’m not under any illusions that any of this is an individual choice about “assessing your own risk” — it’s just as much about my risk to other people.
I’m skeptical of recent federal and provincial public health policies that have amounted to an official position of “fuck it, some people will die” given the history of eugenics in health disability policy. Masking and free tests are imperfect but easy and effective. But that is for another post.