Image: Jenn and me, chemo #6
If I were to distill one functional lesson from my cancer treatment so far, it would be this: things. change. quickly. The discomforts, limited abilities, new meds, new doctors to talk to — what seems like the most important thing today, pales by comparison to some new thing that happens two days later. This is perhaps a function of how time-boundaried my treatment plan is. I’ve talked to plenty of people who have been treated for other, more aggressive forms of cancer who have had much longer, more arduous paths. Here, close to the end for me, so much happens in the space of three days, that I have stopped thinking about weeks entirely.
For most of the last two weeks, the main concern has been my narrowing ability to swallow food. In two weeks I’ve lost about 26lbs., and I’ve only been eating a little bit of applesauce per day in order to get down my meds (thankfully, I’ve been able to keep up my water intake). All of this means that a G-tube or PEG tube is probably a foregone conclusion for me; I have my first consult with that surgical group tomorrow morning, so we’ll see what they say.
Then suddenly, a new issue came up. For several days, I started having severe bouts of coughing and gagging spasms that last minutes and do to damage to my throat. Anything sitting in the back of my throat makes me feel like I’m going to be sick, and that’s what kicks off the episode. Two nights ago, I tried something new during one of these bouts and realized that, with a certain amount of mental focus, I could convince myself that I wasn’t going to be sick and basically “calm” my way out of the bathroom. Since then, I’ve been pretty successful in warding off these stressful spasms, and distracting my body with other things to focus on. Another issue is that they happen more when I’m laying down, so I’ve had to get used to sleeping upright in a chair.
I have pretty much ceased talking. It’s not that I can’t, it’s that talking stirs up things in my throat that make me start coughing and feeling sick. Jenn and I built some workarounds this morning so that I could type to her on my computer quickly, and she can read it on her phone. We’ll use a strategy like that when we go into my consult tomorrow morning.
It’s going to be tough for at least the next three weeks. I complete my treatments this week (I’m ringing the bell on March 28!), but the team says that side effects continue to worsen for two weeks beyond that. In addition, getting the PEG tube installed is going to be a separate and potentially painful procedure (though it will calm my worries about lack of nutrition). But still. Three weeks, maybe five, of things being challenging before they start to turn the corner? It can do that.
Sidenote: one downside to all of this is that this week I had to suspend our weekly family dinners. I knew by Monday that I just wasn’t going to be able to keep it together in front of other people that long. My friends who had signed up to cook for us and all the kids understood the decision, but I was bummed that it had to come to that. Whereas last week I saw a lot of people, this week, it’s been purposefully quieter over here. Jenn and I are learning more all the time about being together when there’s not that much to do or say.
I thought it would also be interesting to share the various things that I’m doing to distract myself during the last week. It’s been harder to sit still and read lately, so I haven’t made much progress in the books I’m reading. I am, however, reading a lot of the internet and cycling through a bunch of topics that typically interest me (critical internet studies, new movies coming out, genAI hit pieces, etc.). But in addition to that, here are some things that have caught my attention . . .
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A recent book, The Right to Oblivion: Privacy and the Good Life by Lowry Pressly looks really interesting, and I am contemplating using it in my online Composition classes this summer. Essentially, the author is claiming that we should think about privacy differently, with respect to our online and offline lives, in order to reclaim parts of ourselves that we have too quickly ceded over to companies and public consumption.
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I spent way more time than I should have building resources for a group of people who are attending Shaky Knees (the Atlanta music fest that we go to every year) from out of town this year. I recruited them all off of Reddit, introduced them to each other on Discord, and wrote a 10 page “Visiting Atlanta for Shaky Knees” resource document for them. (I’m happy to share that document with anyone who would like it 🙂 I know this sounds ridiculous, but it pushes a lot of buttons for me: Atlanta recommendations, indie music, online community building, etc. And, it was something I could do in the middle of the night when I could not sleep. One good thing is that we’ll have 10-20 new people to hang out with at the festival this year (Sept. 19-21).
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I’ve been working my way through a series of online WordPress classes to learn better how to design content better given some significant tweaks WordPress has made to its core platform. I do a lot of this work with students (and with community partners), so coming out of treatment with more robust website building skills will be great. I’m already working on a redesign of my own domain (that you’ll probably see in a couple of weeks).
These are the things that I can still enjoy when I have to sit still, not talk, sometimes not sleep, not feel awesome, and focus a lot of attention internally. I’m making it work.
