The latest cancer update is that after this week’s CT scan, everything is steady and controlled, which is how it’s been for awhile. Sometimes I wonder if I should even keep doing these updates unless something goes south.
Here’s where we are at.
I’m on a kind of oral chemotherapy called a TKI. It works to stop the “innumerable” nodules in my lungs from growing. My twice-annual CT scan showed minimal growth, once again. The tumour marker in my bloods is barely there, which is also good. But the drugs won’t make the mets go away. There is no cure. So I’m in this weird situation where I can never be in remission from metastatic cancer, but I am also “under control.” This is difficult to explain to people and difficult for some to accept. “But you’re in remission, right?” No. Maybe someday that will change, but I don’t spend any energy on that possibility.
The TKIs come with a suite of side effects. The main ones for me are: fatigue, pretty much constant pain and skin peeling on my hands and feet; elevated blood pressure that can be controlled by BP meds; they also wreak havoc on my digestive system which can lead to nausea, or diarrhea, and a slowed digestion; I am frequently and easily dehydrated; I am told I am “allergic to the sun”; I get dizzy and my balance is shit; I am immunosuppressed, which is not a good thing to be in a global pandemic. Occasionally other weird stuff shows up and then goes away. When some new symptom appears, I sort of step back and assess it and don’t immediately start worrying. For instance, I once got a migraine–I’m thankful that it was only once, but also because now I understand a little more of what my friends with migraines and cluster headaches go through.
All of it is manageable but it essentially means I am disabled because of the treatment for a chronic illness. But to me it’s also normal now. Susan Wendell and Ellen Samuels both have profound things to say about this state of being in the world.
This is how it’s been for over a year now. It’s more or less how it is.
I do complain about all the side effects–last night I slept 10 hours and woke up tired and immediately complained to Carrie. But I’m also basically ok with it as long as I get to complain. I still like living and I mostly like my life.* It also helps to be married to someone who has lived with a chronic illness since 18 months (type I diabetes)–I have a good role model.
My health goals for this fall are simple: in a situation where faculty mental health is the worst I’ve ever seen it (and I mean everywhere), I am going to look after my own.** That’s #1. I will try to be kind to people. I also think it’s time to find a new physical discipline–maybe meditation, maybe yoga for fat people, maybe some kind of weight work for my legs to help with balance. And to break up my workday with more 15 minute breaks, when I can run an exercise on my touch guitar, or do something “in” my body.
*Would I rather not be living in a global pandemic? Yes, I would rather not be living in a global pandemic. I would like to see my friends more and to be able to teach in person and maybe travel once in awhile. Would I rather not have spent about 20 hours last week going to the Jewish, getting tests, waiting to see people, commuting? Yes, I would rather not have had to do that.
**I had been meaning to write about this mental health crisis, possibly for a periodical rather than in this space. But then all of the schools decided to enact sociopathic back-to-school policies for high risk faculty and students, so that’s been on my mind but apart from my first ever tweet storm I have been doing behind the scenes things there.