Image: Jenn and me, chemo #2
I started this post days ago, attempting to wrap a quick narrative around my week and share some of the side effects of treatment. However: things shift rapidly on this path, I’m learning.
The most startling and challenging thing that happened this week was the moment on Thursday afternoon when I bit into a McDonald’s double cheeseburger (a guilty favorite of mine) and tasted, literally, nothing. Same for the fries. Between breakfast that morning and a late afternoon snack, my sense of taste had disappeared. This is a side effect of radiation therapy in the mouth/throat area, and my medical team had prepared me for it.
It’s hard to explain the surprisingly negative impact of this change, but basically it boils down to an absence of joy. I definitely took for granted how much enjoyment we all take in eating. When you can’t taste food, your mouth and your stomach feel disconnected from each other. You’re not hungry for anything, because nothing tastes good. It’s somewhat nausea inducing to force yourself to eat. And then, finally, there’s the issue that the medical team has warned me about from the beginning: that some patients who can’t eat enough need to have a temporary feeding tube installed so that they can manually add calories into their diet through the tube. That is definitely a development that I want to avoid if I can.
It’s this weird mind game: eating, chewing, swallowing becomes an equation. A machine-like function. It might very well be like this for the next several months, so I’ll be looking forward to the time in mid/late summer when the joy of eating returns!
Other things . . .
My friend Ori provided our family dinner this week, and impressed everyone with Cuban sandwiches, rice, beans, and plantains. Some of my kids were out of town; my parents came; and Jenn and two of her kids joined us. We played a fun game that’s new to the family — Cockroach Poker — which we’re all enjoying testing out.
I finished Percival Everett’s novel James, a book that I’m discussing with a group of friends on Discord. I’m interested in writing something about the novel on the front-facing section of my blog, but in short: I enjoyed it, especially the conversation that it inspires in readers. It reveals the absence of a human center in The Adventures of Huckleberry Finn, and it reminds us of the slipperiness of Enlightenment-era “rational thinking” and its own internal biases. Most of the novel made me feel very sad, until the end, which is frenetic and cathartic.
Today I downloaded Emmanual Carrère’s 2020 memoir, Yoga. I’ve been following this writer for years because of his ability to tell a good story while blurring the line between observer and subject. I’m curious to see what happens when someone sets out to write a book about meditation, yoga, and stability, and then their life kind of explodes and takes over the story.
Next week begins the adventure of having a new friend every day taking me to treatment. I’ve started sending out an email at the end of each week that reminds folks of the support they’ve signed up for and expectations around drive time, meal prep, etc. I do worry that some treatment days I won’t be feeling great or chatty, but I will remind myself that friends who want to help aren’t showing up to be entertained but to offer practical support.
Lastly: I went for a quick walk today around my neighborhood today, a task which I’d gotten used to in the last several weeks but which, this week, felt beyond my capacity. I cycle pretty quickly through being tired and awake, alert and foggy, but I felt a window of moderate energy open, so I headed out the door. It felt like a win.
