Super Bon!

One of my favourite Loony Tunes scenes is a rare speaking part for Wile E. Coyote. He is in some kind of hut that reads “Explosives: Keep Out”, filling up carrots with explosive liquid in a plan to finally “get” Bugs Bunny, who is meanwhile using a tractor to pull said hut (which is inexplicably on wheels) onto train tracks. As the Coyote fills the carrots, he laughs to himself and says “Wile E. Coyote, Super Genius” over and over. At one point, in the distance, we hear a train horn. His ears perk up, then he goes back to filling the carrots and repeating his koan, until it is too late. C/W — extreme cartoon violence.

That is how my Monday went.

You’ll recall on Sunday I posted that things were going ok with fever and I was hoping to at least get to three weeks. I got to 2 weeks and change. Sunday night I had a bit of a chill. I threw on my sweatshirt and went back to sleep. The apartment has a “smart” thermostat (scare quotes necessary) and it often gets quite cold at night. I then had a coughing fit before going into work. I shrugged it off and headed in. At work, I had a green tea at a meeting, which after a few minutes occasioned a cyclical vomiting episode that went from 0-100 before I could get the drugs in. It took me over an hour to settle down enough to get an Uber home and the simple trip home and up the stairs was a real challenge. When I get into the apartment and catch my breath, I take my temperature and . . . 101.3. It took a double dose of meds and six hours to get the fever under control. So I’m on break from the cancer meds for 48 hours and today is a recovery day. I wouldn’t say I was as cocky as the Coyote (in this particular episode anyway–see also MRI expectations in December for the real blown expectations). But sometimes life deals you a blow and you have to roll with it.

The unfortunate thing here is the fever came last, so I got the warning after the explosion. Before the 101.3, I was in the high 98s all day. It would be really convenient if the fever hit first before the other symptoms. I will leave a request in the suggestion box. I’m sure my meds will take it under advisement.

This week was supposed to be my “back to work” week and while I did a little email and sent out a couple letters, I did not get very far into my own work. I did successfully go into Radcliffe two days, but Friday was the coughing fit I describe below–which started in the Uber on the way to work, which meant I got stoned* at work for the first time since, well, possibly ever. (The driver asks “are you ok?” And I answer “what I have, you can’t catch.” That seemed to put him at ease.). Tuesday I just felt bad and did a little outlining but couldn’t get past that. Happily I’m also working on a little art project at work and was able to do that instead.

* I once smoked so much weed as an undergrad that I woke up the next morning high and took a quiz in that state. Also, stoned on pharmaceuticals is very different from stoned on marijuana.

My cancer therapist is on a 3-week break and she gave me homework for during her absence. Or, more accurately, she told me I was her first-ever patient to ASK for homework. (NERD ALERT.) One of her big things is that all cancer patients need to have clarity on end of life matters because they can come suddenly and without warning–and that doing so provides it for those around us. To be honest, this is probably good advice for every mortal person reading. So she gave me Atul Gawande’s Being Mortal to read, which I highly recommend, and the Five Wishes website to fill out. It turns out despite my relative comfort with my own debility and ambiguity, it is hard to contemplate one’s own finitude and sonic AI at the same time.

I also got through Ivan Illich’s Medical Nemesis (1975). His critique of Western medicine follows his usual schtick about radical monopoly, which I rather like. For those unfamiliar, radical monopoly is the dominance of a type of product or institution rather than a particular business to the point where it becomes difficult to participate in society without using it. Computers would be an example now (try being a prof and not using email); cars are an example from his earlier work (try going for a walk on a freeway); and Western medicine is yet another. To be sick means you have to interact with Western medicine, which inevitably makes you sick in new ways and/or finds new things wrong with you.

For me, this is a multiple things can be true situation, since I largely agree with that assessment, but have been happily living with the contradictions of cancer treatment keeping me alive and making me sick in one way or another since 2009. Illich popularized the term iatrogenesis, which I have used quite a bit to describe my situation before fall 2024.

But there is so much bullshit in Medical Nemesis about what medicine has or has not accomplished that I found it very frustrating. For instance, he claims that Western medicine has not extended average lifespan in the U.S., when it clearly had by 1975. He also doesn’t distinguish between different areas of medicine, like public health, that actually make a difference. The book is full of arguments like that, which I think are unnecessary to make his bigger point about medicine taking over vast swaths of life that might be better run by individuals or other kinds of collectives or institutions.

Gawande is a surgeon who also critiques the medical / safety orientation of assisted living and nursing home facilities, as well as hospital end-of-life care. He would be sympathetic to the radical monopoly point — he repeatedly argues that doctors are not equipped to have the kind of conversations necessary for end of life, that they aren’t prepared for the contradictions involved in the treatments they offer, and that quality and quantity of life are two entirely different concerns. He also shows how medicine (and probably liability, though he doesn’t touch on that–let us not forget the U.S. is one of the world’s most litigious cultures) encroaches even where it’s not wanted. For instance, assisted living started out as a way for elderly people to live more independently and on their own schedules, but today assisted living facilities have many of the same coercive safety and nursing dimensions one finds in nursing homes, where residents are kept safe, but may struggle to lead meaningful lives.

Symptoms and Side-Effects

Carrie left a little over a week ago and I’m still alive and doing things, so we are going to call it a success. The first couple days I was fairly bereft, but I anticipated that and made social plans. I quickly realized too many social plans created a problem of their own and what I needed was a good chunk of alone time. I’m still figuring out the right balance (<–story of my life) but am doing better now. And of course we talk every day. And I have been getting a lot of cat video.

I also had a few mini-crises this week which actually helped give me confidence. Twice I got into nonstop coughing cycles, which are a relative of the vomiting cycles I know and love. Both times involved delicious frozen things. The first was vegan ice cream at a friend’s on Friday night; the second was a new smoothie recipe using frozen fruit that I got from a friend on Wednesday. Both times I recovered, and the second one I treated like a vomiting fit and hit it with Ativan and Zofran, which worked much faster but left me stoned for the day. That’s the bargain I’m striking. I am apparently off ice cream and other frozen desserts for now. (Popsicles have been fine for some reason.) That ENT appointment can’t come fast enough.

I’ve also been quite vigilant about body temperatures, well mostly. I have twice now forgotten to check before cooking dinner and then discovered that there was a reason why cooking dinner seemed so tiring. But otherwise I’ve mostly managed to keep myself under 99.5F and fight back rising temps as they happen. I don’t know how long this will go on–I usually manage about 3 weeks before I need a break from the meds. But so far so good.

My current challenge is middle-of-the night coughing fits. Friday night I was up for a solid 2 hours, though I confess part of that was me getting some heavy music stuck in my head and then deciding to listen to the record, which might not have been the most sleep-friendly approach. I am experimenting with Tessalon Pearls, which numb the throat and lungs (?!?) as a way to get through it. Last night I took one at 3am and got back to sleep quickly. I might try one at bedtime tonight to see if it can get me through the night, as they are slightly sedative so I wake up groggier. I already wake up feeling kind of crap until I get meds and caffeine into me, so would prefer not to make it crappier if I can avoid.

In happier news, it was really cold and dry a couple days this week and that was GREAT for my walking and stair-stepping. I’ve even left my oxygen off for some bathroom trips and other Very Small Excursions. Yesterday with the snow I found breathing a little more challenging, but oxygen saturation looked to be about the same.

Tests: Next week I have a spinal MRI, for which I’m slightly nervous. Not the exam, but the results. Still, better to know. I also have an appointment with the nurse practitioner at the cancer center. I am secretly hoping for another walking test and reduction in oxygen flow, which might get me over the line of being able to fly to California in March (pending the rental or purchase of some equipment), assuming my various tests between now and then don’t turn up anything more urgent.

Housekeeping

I’ll keep posting at least weekly updates here. If I successfully get into the AI writing I want to do this month, that may take me away from some of the philosophizing here (blablabblabla spoons blablabla brain). We’ll see. So the blog could get quieter.

Although I regularly assign Audre Lorde’s “Breast Cancer: Power vs Prosthesis” in my disability course, I don’t know that I’d ever sat down and read her Cancer Journals straight through. Having now done so I’m not sure that’s how it was intended. The book consists of three essays, and some of the examples that stuck with me I now realize may have done so because they repeat across chapters: the lambswool prosthetic Lorde is offered and tries (unsuccessfully at first) to refuse, the story about masturbation as a rediscovery of her body after surgery, the nurse who tells her she is ‘bad for morale,” the potlucks and community among her friends, etc.

In the disability class, I focus on prosthetics as technologies that introduce all sorts of ambivalence for both their users and those around them–observers and professionals alike. The lambswool fake breast is inherently tied to the stigma around breast cancer. As Lorde explains, people who have had mastectomies all wearing prosthetic breasts makes it impossible for breast cancer survivors to see and find one another. It hides the illness away. She uses the language of silence and voice, which I’m less fond of (not that visibility doesn’t also have its issues), but the point is solid. Prostheses balance cosmetics and function in different ways. My nasal cannula is on the opposite side of a continuum from a fake breast (function over form) but both mark their wearers, visibly or invisibly.

Lorde also draws a connection between the fake breasts made for cancer patients and cosmetic surgery on breasts more broadly, calling out the industry as not primarily being for or about women. This is a common theme throughout the book: things that are about personal experience, about “just” cancer become political, ranging from cosmetic surgery to environmental poisons. At the same time, she also says that each woman (a term to which I will return in a moment) has to make her own choice and all choices are valid, so long as they are made consciously.

In other ways, what struck me is how long ago the late 70s and early 80s really are now. One of the striking points in the book that I did not remember is that for her, physical pain had to precede emotional pain. And when I think about the physical pain I shudder. Pain management was not a thing like it is today when she was hospitalized, and add to that her status as a Black lesbian woman, and I wonder whether she got adequate pain treatment even for the time (the active participation of her partner may have helped–it’s hard to know). All of the hospital scenes strike me like this, which is not to say everything is all good now, just that things were even worse then.

Lorde’s language is also a weird mix of timeless and of her moment. Her address is sometimes to women as a category–one that has been so fully challenged in contemporary feminism (TERFs excluded)–sometimes to Black women (a category that still seems to resonate in its specificity), and sometimes to Black lesbians. I feel like that world was slowly moving out of focus as I came to my own political consciousness in the late 80s and 90s–despite the persistence of the potluck as a social form–and now is a kind of memory. Lesbian culture means something very different when there is a spectrum of genders more fully available to more people. And the kinds of gestures I find across that book, from how she discusses her sexuality to how she discusses her community, are very much of that earlier moment, before same sex marriage, before the flowering of trans and non binary politics, and at a time where lesbian culture was shaped even more by heterosexism in all its violent and nonviolent forms than it is now. At the same time she understood her sexuality, her relationships, and her culture to be radical acts simply because they existed and sustained her. Her world no longer exists. That’s both and good and a bad thing.

The book also has repeated reflections on fear and mortality that I hadn’t clocked as seriously in past readings. “In becoming forcibly and essentially aware of my mortality, and of what I wished and wanted for my life, however short it might be, priorities and omissions become strongly etched in a merciless light, and what I most regretted were my silences” (18). This point is echoed later in a comment on activism, after discussing widespread systemic violence in the U.S.: “the only truly happy people I have ever met are those of us who work against these deaths with all the energy of our being, recognizing the deep and fundamental unhappiness with which we are surrounded, at the same time as we fight to keep from being submerged by it” (77.) I connect these two thoughts because they inform one another. It’s something of a cliche that near-death experiences can lead to people putting their lives more in focus. (This cliche is worth unpacking on its own but that will have to be for another post.) But for Lorde, that death has to be understood in a broader context: individual death has to be set against collective death. In this way, she was at the forefront of politicized cancer writing to come: yes, my disease is individual, but it is also social and environmental. The question “why me” can only be asked if we ask why the disease exists as it does, why the medical system works the way it does, and why the systems of values around both exist as they do.

Happy new year! I have boring resolutions: keep taking my cancer drugs (hardly counts–I am a compliant patient) and keep doing PT and related exercises in an effort to regain strength and endurance. (Also don’t need much motivation here.)

My 2024 in review is absurd and not worth recounting here–you can look back to older posts if you’re curious for some highs and lows. It was a year of extremes for me.

This post is mostly an update from my last post regarding strategies for living alone while chronically ill. I received some long and thoughtful messages from friends near and far, I got lot of good suggestions. Thank you friends! Every chronic illness is different so the flareups and remedies take different forms. Take what’s useful for you–that’s what I did.

Beyond monitoring and stations, here are some suggestions:

Everyone agrees with “don’t wait to take the drugs” — getting out ahead of symptoms with medications that treat them is essential and appears to be the best thing a person with any kind of flareup can do. So I will be much more aggressive with taking drugs.

On the emergency call list, people differed in terms of execution. Ellen Samuels suggested having a rotating group of people so nobody is on duty all of the time and nobody gets worn out. Sara Grimes suggested having one primary person and one backup, and giving them one another’s contact information. In the end, I am going to be optimistic and go with option 2 here. Less overhead for me. I really don’t think I’ll need the list, but better to have it.

I have already drafted an emergency document with too much information in it, and on Lisa Henderson’s suggestion, created codes for different messages so I don’t have to type anything out or try to talk. (Someone else suggested emoji). EG, 911-v is vomiting. Charming, I know. I would need to redact some things to share it publicly but if you want to see it for some reason, ping me.

“Witchcraft list” / “Comfort Supplies”: This is the most intriguing to me, but also slightly puzzling for my situation. The witchcraft list is from Sam Thrift, who also taught me the term “migraineur,” which I love. She says she has to remember to do non-medical things to make herself feel better when having an episode. The list includes all sorts of things she can do for herself. Sara Grimes’ idea of comfort supplies is similar but objects–blankets, heating pad, etc. Ellen Samuels also suggested the heating pad for chills, and so there is now one plugged in next to the bed. She calls hers her “boyfriend.” I will need to name mine.

I am wracking my brain a bit as to what other comfort supplies/witchcraft practices would be for me, but I think self-distraction might be the way to go. Even just putting on some music. I’ve also got blankets ready to go in the living room (and extras in the bedroom).

Bringing in help: This was Sam’s suggestion. I don’t want full on home care but I do hire people to clean, change the bed, wash towels etc. And I will have friends help me carry stuff up stairs when I need that. Ellen suggested https://lotsahelpinghands.com which an interesting resource. Or a Google spreadsheet. I go this route if my needs are at all complicated. For now I’ll just text people. It seems a lot of these tools are set up for bringing people food, which I mostly don’t want or need.

(A side note: resisting offers of food is quite a job. It’s the first thing people want to do for the sick, and part of many cultural traditions. It’s the “obvious” thing to do, except in a situation like mine, it turns out.)

Old standbys: These aren’t good in acute episodes like mine, but they are good as general practices and also for episodes of depression or other “slower” kinds of flareups. Get as much sunshine as possible. Stay vigilant with meds. Practice anxiety-reducing breathing.

Techy stuff:

Alexa or other smart speaker device: Sam set this up for a relative. It allows you to operate with your voice and not have to have your phone on you to request medical support.

Extra backup phone battery in case of ER trips. Waits are long everywhere. I have one for other reasons but it’ll be useful if I needed to go.

Sara suggested a smart watch to monitor body temperature. I’m considering this one. Not sure if it’s accurate enough, and right now I’m making do with thermometers at all my stations.

—

Symptom and Side Effect Update:

It’s been a few days, so time to check in. First of all, a mental health check. As of yesterday, Carrie is in California so this whole solo thing is now happening. To say I am having a lot of mixed feelings about it would be an understatement. But it’s early days and I am figuring things out. She has sent tons of cat footage though, so that’s something. I think the issue is partly that we are on break until almost the end of the month, so it’s a lot of unstructured time and many of the other fellows are away. Whereas Carrie’s fellowship starts up again on Monday. The plan had been for me to be out there with her. But I actually do need some alone time for reflection, and I also need some time to write, so I will start leaning into that next week.

No major fevers since my last update. I do often wake up around 99.5 but I think that’s because there’s an 10-12 hour break with the Tylenol between going to bed and getting up. It goes down after I get drugs in me.

No vomiting or shakes. Yay!

This week’s mystery is extra blood in the phlegm I’m coughing up, which the nurse practitioner at the Cancer Center doesn’t seem worried about unless a lot more comes out. But my throat does feel irritated, and last night I had a long and nasty coughing fit where it felt like I couldn’t get stuff out of my throat. I have an ENT appointment later this month. I’m guessing it’s related to my irradiated pharynx, ie, cancer treatment from 15 years ago. It seems very cold things, like ice cream, can trigger it. At least I’m hoping that’s it.

Last Friday and this Monday we had hour-long calls about my brain mets. Friday we spoke with my Montreal oncologist, and Monday with a radiation oncologist at Mass General. The plan for now is to do nothing and see what the next scan shows. If things are stable, we wait for the next scan, and on and on. Watch-and-wait.

But here’s what we learned in more detail:

The mets are small. On Monday’s Zoom call, the radiation oncologist took us through the MRI scan so we could see them, which we clearly could. He also showed us the October scan for comparison. I don’t know how metastasis actually works, so it’s not clear to me when or why things “escaped containment” in my lungs but my guess is it happened as the cancer morphed from normal metastatic thyroid cancer to my current “high grade” version.

Everyone thinks the mets are small as of this scan, and wants to watch-and-wait. That could change at the next scan, or the scan after that, but it’s the plan for now. We are in full favour of going slow.

Treatments are tricky. It’s possible the drugs I’m on will help, but it’s also possible they won’t. There might be another drug that could help, but we were told that brain mets don’t generally respond well to drugs because of the blood-brain barrier. It’s also not clear what that would mean for my lungs–you can only be so toxic at any given time.

IV chemo also generally isn’t used for brain mets.

That leaves radiation if the mets grow or more of them appear and drugs don’t work. One approach is to wait for lesions to get a bit bigger and zap them individually as they become problematic. That’s what happened in my lungs this summer. There’s a point where there are too many, or they are growing too fast.

Another approach is called “whole brain radiation.” Except it’s not really the whole brain anymore. They spare the hippocampus and there’s a clinical study where they leave out other areas, and they can also still focus on targeting individual mets while they are at it. (I am not sure if I would be eligible for the clinical trial, or able to do it since my US medical insurance ends May 31st). Radiating the “whole brain” can lead to all sorts of short term and long term side-effects, which like all side effects are undesirable. Most of the talk about side effects is very euphemistic, using terms like “cognitive function,” and we really pressed the radiation oncologist on what that meant in the concrete. I don’t like euphemism in medical talk. We got into details, which I will spare you for now. I do believe it would be possible for me to lead a fulfilling life post-recovery (which might be a few months). But it might include new disabilities. And as one of my favourite lines from Alison Kafer goes, just because one has some disabilities and has accepted them, one doesn’t necessarily want more. Ok, I don’t actually care that much about hair loss at this point.

So whole brain radiation sounds to me like a treatment of last resort or near-last-resort, but also, there aren’t a ton of other treatments, so this decision could come sooner than I’d like it to.

—

I have a couple small achievements to report that have been left out due to the whole “it’s in my brain” thing that’s been our focus of attention since last Thursday.

I walked up all 14 stairs from the first floor to the second floor, and then into my apartment, while carrying a 10 pound oxygen tank. I did not stop to rest in the middle, and I was not panting when I finished. I didn’t walk fast but it means the physical therapy has been working.

Speaking of which, I have just “graduated” from home physical therapy (ie, insurance won’t pay for more), which means I will soon start outpatient. In the meantime, I will continue the exercises I have. There’s a place two blocks away where I’d like to be seen.

Finally: I am able to comfortably breathe room air again–not only while I am sitting, but also when I am sitting with people and talking. My blood oxygen saturation does go down to the 91-93 range, which means if I exert myself it drops into the 80s, but I’m hopeful that will improve over time. Also, after a bit of adjustment, 2.0 litres of oxygen is as good as 3 for when I need it, which is when I’m moving around doing stuff or exerting myself at all.

Up next: Susan Sontag.