Super Bon!

Cancer Crawl, 31 Jan 2025

The tests have all come back, so I have news. Strap in because it’s a bumpy ride.

Bad news: the mets in my brain have grown, and there is one spot where there is some bleeding. I am probably not symptomatic apart from twice getting a numb tongue for 10 minutes. Carrie and I spent an hour on a video call with the radiation oncologist here, who is great. There are really three options all of which are “bad” options in that they all contain risks. If I do nothing, he estimates I’ll start seeing side effects in two months, at which point we could do targeted radiation as a sort of palliative strategy. A second option that I am not at all keen on is using medical treatments to treat symptoms but doing nothing about the cancer itself. The third option is whole brain radiation, maybe minus the hippocampus. This comes with a lot of potential side effects but good chance of extension of life, and my odds in side-effects roulette are slightly better because I’m 54. At the moment we are leaning towards option 3, but that depends on discussions that will happen this weekend and next week. There is a lot more detail I can add about whole brain radiation and its various risks, but for now I’ll leave it at this: not radiating is at least as risky as radiating as far as I can tell.

The good news is that my lung mets continue to react to the meds I’ve been taking. So at least that is working (which is also why we are leaning towards the whole brain option).

Tuesday I see my medical oncologist, and the radiation oncologist is going back to the tumour board. We might make a move as soon as late next week. If I do choose the whole brain radiation, I can do a full half-day neurological panel of tests to set a baseline, which is something I would definitely want to do.

Symptom and side effect report:

Sleep’s been decent, all things considered. I got two vaccines Tuesday eve that caused some fever spikes alone or in tandem with the cancer meds. I was able to handle it and the second spike came with chills so I used “the boyfriend” to warm up my core, which worked like a charm. I hesitate to write this for reasons that will be clear at the end of the sentence: I last vomited Friday evening.

Housekeeping:

“Cancer Crawl” used to be a sub-feature of the blog (like a news crawl), but it’s more or less what I’m writing about these days. I’ve taken it out of the title because it’s ugly and takes up lots of space. So future posts will look like this. You can always find my 15+ years of cancer posts by hitting the “cancer” category.

It’s been a week so here is a check-in.

Things have been pretty rough on the symptom/side-effect front. I did have friends in town this weekend and got to see them a couple times, which was very nice.

I’ve been coughing up lots of blood and/or bloody phlegm (a known side effect of several of the drugs I’m on), and had a lot of congestion in my chest and throat. On Thursday’s visit to the cancer center, my nurse practitioner listened to my lungs and said the congestion was probably in the upper chest, not lungs, which was confirmed by an x-ray. I’m now nebulizing albuterol 2-4 times a day, which seems to be helping. I’m also pausing baby aspirin and trying to avoid Advil, which I’d been using to (unsuccessfully) help manage fevers. The NP asked me “who prescribed baby aspirin?” and I had to answer “you did.” I think it was as a precaution to prevent a stroke from afib? I’m on metropolol and may or may not have afib at this point–my heart rate feels relatively well controlled.

It is really hard to keep track of all the drugs and their interactions. I keep a list that I edit as needed. This week I’m pausing montelukast, an asthma med that I may not need with the albuterol, and which lists “difficulty swallowing” among its side effects, to see if I feel any different. I feel like there’s just a lot of body experimentation to do–trial and error to see what works, because what worked before is no longer a good guide. Speaking of which….

The cough has also been messing with my sleep. I’d wake up around 3am and cough terribly for an hour or two. It’s simple gravity: if there’s a bunch of crap in my lungs and I’m laying down, it’s going to creep up on me. Eventually–I can’t say exactly when–I started going out to the recliner in the living room for the last few hours of sleep. The last two nights I’ve experimented just sleeping in the recliner. 3 hours vs 9-10 is a whole different proposition for my body — it’s not a new recliner and doesn’t have amazing back support and I had to figure out how to position my neck. But after two nights of experimentation, it’s an option if it’s needed. Starting tonight, I am going to try the bed again, this time with two foam wedges (one 15 degrees, one 25, for 40 degrees total) and have blankets and pillow ready to go in the living room if I need to crawl out to the recliner in the middle of the night. We will see how this goes. Sleeping in a recliner feels like “giving up” to me in some way. I’m sure people with COPD or other respiratory ailments do it all the time, but I really love the bed (I have a rare rental with a Very Comfortable Bed) and don’t want to give it up.

After fighting a losing battle with fever last week, I went into the “prednisone protocol” on Friday, which involves stopping the cancer drugs for five days and taking — you guessed it — prednisone. Friday I noticed no improvement but I might have puked it out in the morning. Hard to tell. But this weekend I definitely feel like I’m on steroids, and as of yesterday, my temperatures were back in the normal range. Wednesday morning I go back on my cancer meds.

Friday I had my spinal scan. Hoping that turns up no new news. My remaining scans (CT chest, MRI brain) are a week from Tuesday.

This Tuesday I see an ENT physician’s assistant, which will be for my swallowing / throat burning / vomiting issues. We will see what they come up with, if anything. I realize my problem is that my condition transcends specialties — it’s probably a mix of throat issues, stomach issues, and cancer meds.

There’s a post to be made about being “in my body” and self-experimentation, but I’m not there yet. In the meantime, wish me luck-: with scans, sleeping, fevers, blood/phlegm, and balancing meds. More news as it happens, or in a few days’ time.

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.