Super Bon! – Page 4 – Naturalized, but not natural

Definitely Cancer Crawl: 19 October 2024

I’m writing to you from the cancer ward at Mass General Brigham Hospital, where my local oncologist works. I’m currently on an intense Dilaudid and Ativan hangover so this won’t be the usual thoughtful post. However, I can tell you that today is the first day I have felt better than the previous day for at least a couple weeks.

Thursday morning, after days of decline, I checked in to the hospital with extreme shortness of breath. Since then, the following things have happened:
People have drained about 3L of liquid from my right lung. Supposedly someone will come do my left lung today. I’ve had CT, MRI, Ultrasound, and X-ray scans of my body since Thursday. and a followup visit with a neurologist in the morning. Lots of new info, included a new diagnosis unrelated to the current crisis. I will save those details for later.

I have been diagnosed with pneumonia for a 5th time. The 4th course of antibiotics is currently in my bloodstream.

But the headline? I’M ON NEW CANCER DRUGS as of last night. I am really hoping they actually attack the stuff generating my symptoms. Which is probably a shift in my cancer. There are theories here but since we don’t know yet, I’d rather not run through them while also tripping balls.

I am not able to keep up with email, calls and messages for time being, but am grateful to receive them. I’ll keep you posted as best I can.

Cancer+ Crawl 12 October 2024

My news and the absurdity of modern industrial medicine. Or, how I got diagnosed with pneumonia for the third time in less than a month. This is a long one.

I realize that being a cancer patient is a weirdly privileged position. Of course, fuck cancer, but the infrastructure and level of care is a cut above everything else. Most sick, chronically ill, and disabled people have to fight their way through the thicket of a medical system that is not designed for them, and certainly not designed to treat people as whole persons. Having now wound a very tangled path through 4 different medical institutions in the Boston area, things are getting a little messy but I feel like things are finally moving in the right direction. I still feel awful but we’re taking some steps to help with that as well.

—

First the major good news. My new local oncologist was sick, but had a Zoom meeting with Carrie and I. Which was good because there was a LOT of information and I was honestly starting to feel desperate. I wish that somehow I could have started with her, but that’s not how medical care works. She took her time, really listened, and walked us through all of the possibilities. A full hour. I explained that I can be infinitely patient around testing and uncertainty but I was desperate for symptom control so I could enjoy life a little more in the meantime. She prescribed codeine to see if that will control my cough at night. I hate the wooly feeling from opiates but sleep is nice. She prescribed something for my throat in case I have thrush. And she set in motion a series of events that should result in the delivery of oxygen today.

So then there’s the cancer, and my lungs. Based on comparing recent CT scans, her interpretation is that the pattern of growth on in my lungs is probably not typical disease progression for my kind of cancer. I will spare you the possibilities for now because we should have more information soon and rainbow of possibility is incredibly broad, with each possibility meaning completely different things. I will be having a bronchoscopy, hopefully next week, which will let them look into my lungs, and take a biopsy of the tissue that appears to be behaving differently, and also make sure that the blood I sometimes cough up is from my Very Raw Throat and not deeper down.

This is the course of action also recommended by my Montreal oncologist as well, and they also both seem to think I will be switching cancer medications sooner rather than later. I am totally fine with this.

I am also now wearing a Zio heart monitor for the next two weeks. Most of the doctors I have seen seem to think that my low oxygen and breathing issues are causing the erratic heart rate and not the other way around, but at least there will be some more data. This involved a visit to a cardiologist I’d never seen before, about whom I have mixed feelings. She’s obviously very knowledgable, and in the end her plan worked, but it was a problematic interaction. Afterwards I asked Carrie if she felt I was being listened to, and she agreed that I was not. The caridiologist is not American but her approach was my stereotype of American medicine: trusts data over testimony; listens to other doctors, not patients; extremely aggressive in attitudes toward treatment (ie, surgery).

Because the oncologist could not see me in person, she wanted me to convey to the cardiologist to get some oxygen numbers so that the oncologist could order home oxygen for me. This led to a bizarre series of exchanges that escalated quickly:

“I don’t see a message from her in the system.”

I was the messenger.

“We don’t do that kind of testing, that’s pulmonology.” The oncologist knows that, she just needs some numbers since she couldn’t see me in person today. There is literally a pulse oximeter right there on the desk, and I also have one.

I convinced her to do a test, but it is the stupid walking test they do, where my blood oxygen sits at 92. If you have me raise my arms over my head to put on a sweatshirt, or walk up a small incline, or generally change the vertical position of my body, it drops into the 80s. If I lay down, it drops into the 80s and gets harder for me to breathe. I know this because I have been tracking my oxygen multiple times per day with a pulse oximeter. So despite my testimony and request to show her, we return to her office after the walking test and she says she can’t write a prescription for home oxygen. I proceed to put on my sweatshirt over my head, which has the predicted result, and put on my pulse oximeter to show her.

Things escalate quickly from there. She goes out, comes back in, says I need to go to the ER and be admitted to the hospital. The numbers, in case you are curious, are 92 resting and 87 with movement, which were the numbers that got me discharged from Newton-Wellesley hospital in September. She keeps saying “it’s not safe” for me not to be in the hospital without home oxygen, and that “in this country” (meaning the US) going to the ER is how you get things done.

There was then a lot of back and forth and phone calls here and there. The caridologist managed to get me sent down to another office to get the Zio thingy attached (#appnotavailableonCanadianAppStore), which to be fair to her, is some impressive institutional wrangling.

Carrie and I talk it over. I. do. not. fucking. want. to. be. admitted. with no real change to my condition and a weekend coming up, where nothing will happen in the hospital. But we decide to take the chance that going to the ER will expedite the oxygen delivery and head down there around 2pm. We’d arrived at cardiology at 11:30am.

The ER is your typical American urban ER. Lots of down and out people, crowding, not beautiful, prison-like toilet. TVs blaring in the waiting room. The admitting nurse looks at us funny when I say I’m here for oxygen and please ignore all of my other conditions. Reader, they did not ignore the other conditions. I got a full EKG, a chest x-ray, and lots of blood work. For the O2, I got the same stupid walking test, and the person who was administering it to me was not listening to me either. At least the PA overseeing my case admitted to us afterwards that the test is a bullshit racket for insurance.

The X-ray comes back, and it’s not quite the usual “sir, I’m sorry to say you have cancer” mirth but it’s good and cloudy as usual. A blood test comes back with elevated white blood cells. I’m still tapering off steroids, which elevates white blood cell count. But there’s another test that suggests there might be an infection. I explain that I have already been around this block twice. Nevertheless she persisted, and now I have been diagnosed with pneumonia for a third time since September, and have been given a third course of antibiotics.

With just a couple more rounds of antibiotics, I should soon qualify as USDA beef.

We were discharged at 5:30, which is fast for an ER but both of us were pretty crispy by then. On the way out the TV is blaring an ad for Wegovy, and as I trudge by with my cane I hear that I should not take Wegovy if I have thyroid cancer.

This morning, we received a call from a company that’s going to deliver home oxygen this afternoon. So it worked. The cardiologist was basically right.

—

In other news, there are too many cooks in the kitchen. I’m concerned that some of my medications (prescribed by many, many doctors) are fighting one another, and worsening symptoms rather than relieving them. Again, I can be very patient with uncertainty but I want symptom relief in the meantime. I came up with a plan, pitched it to my primary care doctor, and she wrote back almost immediately with a couple small tweaks but basic agreement. So lots of changes are about to happen.

—

Patient portal news: doctors have staff who filter their messages in the patient portal, so my message doesn’t always reach them because a staff member filters it out. Also, there are currently 15 conversations in my patient portal. 5 are with doctors about real stuff, 10 are about insurance.

America.

Maybe cancer crawl: update Oct 5

So the most important news is that Carrie is here. I wake up several times a night to cough up phlegm in a fairly horrific sounding fashion. It was nice to feel a warm hand on my back as I was trying to hork (<–technical term) something up. And of course the apartment is lit up with her company. A big part of our relationship is constant ridiculous banter, and that’s lovely as a constant rather than something I get in a couple doses during the day. When we decided to live separately this year the mission I took for myself was to see what it was like living independently while chronically ill. Since I got sick with whatever THIS [gestures at own lungs] is, I’ve managed with the help of a lot of friends old and new, but I feel like the point has been made and it will be nice to depend on my spouse for awhile.

—

I have lots of doctoring news to report but no conclusive anything. I saw my pulmonologist on Thursday, who took lots of time with me. His latest thing is I am probably not having any kind of asthma attack, so we are going to try diuretics for three days to see if they help my breathing (WILL SUCK but that’s how empiricism works). In the absence of anything conclusive, he suggests that I stay on any meds that make me feel better, and drop any meds that make me feel worse. We are in the phase of “symptom management.” I’m also tapering off steroids which means I should hit rock bottom Tuesday or Wednesday when there are no more pills. That will be some dark night of the soul shit but that’s the deal one makes with prednisone.

Friday I met my new primary care doctor here, who is one of the only PCPs in my plan to also be an osteopath. She suggested wearing a heart monitor just to check if I’m going into afib. The current theory is that my afib in the hospital was related to the breathing, not the other way around, as all evidence suggests my heart is healthy. But it’s always possible they missed something. I have a referral to cardiology for that (she can’t prescribe directly) and I have a referral to speech therapy to work more on my swallowing. But the osteopath part was also great. She laid hands on me, and I felt considerably better after being adjusted. She also gave me a stretching exercise to do which has helped some.

Through the miracle of screenshots and email (and my permission to do it this way), doctors on both sides of the border can now compare stills of my CT scans from August and September. Interpretations are varied. The pulmonologist here says he sees no change in the cancer. Conversely, my oncologist in Montreal, with whom I spoke at length on Friday, is now concerned that the fluid that appeared in my lungs (and their current limited capacity) could represent some kind of progression of disease, though it would not represent a standard progression of disease. On Friday the 11th, I am going to see a local oncologist with expertise in my disease, and she will give her opinion. If they both agree, one option here is to change cancer treatments. If my diminished lung capacity is a result of the cancer somehow, the new drugs theoretically could make me feel better. Though there are some steps between here and there, both decision-wise and then insurance-wise. And there’s not a lot of certainty there either whether this will help my symptoms, which for the moment, is the thing I care most about.

Update and a Brief Detour into Existentialism

You know how people sometimes post really personal stuff on social media and then say “I might delete this later?” Yeah, this is one of those posts.

The update: I am surviving ok at home. I’m in some kind of steady state where I am not in immediate danger, but I also hate this. My oxygen is still too low and I need to rest after prepping breakfast or cleaning up thereafter. The coughing fits also just kill me. I am still having trouble swallowing and have to eat and drink very slowly and intentionally or my throat goes into spasm and I gak (<–my technical term). Relearning how to eat is hard! But I think my throat is healing some as there is now almost no blood in my phleghm. I am still in that phase of figuring out what med to take when. Yesterday my heart rate was all up and down in a most unpleasant fashion. Today it’s more steady because–I think?–I timed my new asthma drugs differently.

I am being well looked after by friends. I can socialize for a few hours as long as I am just sitting, and the people around me don’t mind an absolutely horrific coughing fit from time to time. I was ferried to a friend’s house last night for the US VP debate, which was predictably awful, but I had a wonderful time with the company. I am determined to go for a short walk today, with my cane, at whatever speed is slow enough, just to get some fresh air. Radcliffe has been great so I can at least remotely tune in to other fellows’ talks.

Doctoring: tomorrow I see the pulmonologist, Friday morning, I establish primary care, and the following Friday, I meet a local oncologist who is a world expert in my condition.

Carrie arrives late Friday afternoon, which will be fucking great.

—

A Detour Through Existentialism to Explain My Attitude:

In response to reading my writing about illness, some people ask me about the style with which I write. Some call it “optimistic” or “upbeat” or “inspiring” (<–I know this is a banned word in disability land but let’s give people some grace). How, they ask, do I maintain such a positive attitude?

Here’s your answer: existentialism. My suffering is utterly, inherently, fundamentally, meaningless. It is not a cosmic punishment for anything. It is also not a challenge thrown before me to improve my character. It offers me no moral authority, and it does not morally degrade me in any way. It just is. I have no motivation to lean into it or to continue to suffer.

Writing about my own illness, even making fun of it, is a way of giving it shape and form. Intellectualizing it–to a degree–helps me feel some distance, and offers me whatever perspective I need. Of course I have to be able to do that. The first couple days of hospitalization last week made that impossible. Now I have time to reflect, so I narrate.

As you may know, existentialism is a baggy collection of philosophies (and philosophers) who argued that for people, the primary challenge of existence is coming to terms with its givenness and with their own mortality. It is a rejection of the metaphysical meanings imposed by organized religion, as well as the social meanings often imposed by institutions <–This is a gross oversimplification but this blog is not where I am going to parse Jaspers, Buber, Heidegger, Sartre and de Beauvoir. Nobody wants that.

I think my conversion moment happened 12th grade in Mr. Mossberg’s humanities course. I was raised Jewish and to be Very Jewish. Because it was determined that I was good at book learning, I was supposed to pious, and was subjected to years of Hebrew school after school and on weekends. To me, so much of the religion I was being taught seemed hollow, authoritarian, and without any real meaning or joy (my views on religion have evolved but this is what I felt at the time). I did, however, get my love of close reading and footnotes from Mr. Blackman, who specialized in Qabbalic readings of scripture, so big thanks to him for that. Anyway, the Jewish education didn’t take, and neither did the Zionist education — but that’s a story for another time.

I was a person without religion, despite having been given a whole lot of it up to about age 14, when I finally convinced my parents to let me stop going to Hebrew school. This is where Mr Mossberg’s class came in. It was greatest hits of Western philosophy. We read a little Camus — I think — and then watched a filmstrip in class. In my mind, the filmstrip is the conversion moment. It was all in blue and brown hues. The illustrations were all that sort of empty post-war European modernist vibe tinged with the lonely overtones of American painting and social theory, and the music might as well have been Schoenberg. Knowing what I know about film and TV history, let’s say this filmstrip was made in the 1960s, and being shown in 1988 0r early 1989. It went something like this.

[Opening slide, including portentious title about existentialism, and some kind of overture.]

DING

[Man walking alone in the rain, in the city. Definitely wearing a hat and an overcoat.]

“Man must reckon with a simple fact. One day he will die.”

DING

[Another image of “mass man” walking in a crowded city, but utterly alone.]

DING

“Life has no meaning that is given to us. It is up to us to determine its meaning.”

DING

..and so on.

My 18 year old mind basically exploded. Here was a worldview that implied both freedom and absolute finitude, and that made clear both conditions imposed demands on the subject. I don’t claim that I fully understood all that either then or now. But this basic perspective has shaped my towards my own illness, my relationships to others, my relationship to others’ beliefs that are not my own (I consider myself the world’s least militant agnostic), to the various emotional and psychological struggles I’ve had in adulthood, to my sense of justice and fairness.

As narrated in that filmstrip, and in some of the more macho writings in the tradition, I think existentialism gives the subject too much credit and too much power. And its universalism is probably indefensible from any modern theoretical position. With cancer, anyway, apart from being a compliant patient, I’ve really ceded control to my doctors and those around me, and to the illness itself. Maybe my interest in modular synthesis lines up with that–an endless exploration of the possibilities of control in another space in my life as a sort of compensation, I don’t know.

Intellectually, I don’t do much with this strain of thought in my scholarship, apart from some edges of the phenomenology in Diminished Faculties. I’m too uncomfortable with the tradition’s universalism and I haven’t found existentialist writers with whom I connect politically. I prefer more radical and collectivist traditions.But I think that filmstrip somehow does a good job of explaining why I react to my illness the way I do. I can savour the moments of happiness and connection in my life even as I am suffering because I see those two things as morally unrelated. They can simply coexist.

There is also a disability studies critique in here. Western medicine, and its reflection in popular culture, is incredibly moralistic. It implies people have much more control over their health than they do. It implies that the sick, the dying, the injured, are a burden on the healthy, rather than a turn that we all take if we live long enough. This also means I have become shameless about asking for help when I want and need it, with the caveat that the help I want isn’t always the “standard” help that people expect to want.

So in asserting that there is no given meaning to my illness, I am emphatically rejecting the moralistic worldview of illness and debility and everything that goes with it. At the same time, I have had people say they felt bad about feeling bad about going through whatever they were going through while I was dealing with my mess “so well.” I’m sad to hear that. Misery has no means test. It’s normal and fine to be unhappy when you feel like shit. I spend a good chunk of my day annoyed at my limitations right now and feeling like I’m missing out on the joys of sabbatical. What I wouldn’t give to be able to go into the office every day right now! But that’s not the only thing I feel, and so I just try to go out there and confront the whole catastrophe.

All I can say is that it works for me, for now. If I’m true to that existentialist kernel, then that also implies how I think about it for others. This might not work for anyone else. It’s up to you to figure out what works for you.

Maybe cancer crawl: 28 Sep 2024

Big news. I’m writing this from my dining room table at home. It’s nice. The only beeping I’ll hear today is from appliances if I use them, or perhaps a synthesizer if I get frisky (maybe in a few days). I am definitely exhausted from 5 days in hospital but I can just chill here and I have friends who have offered to help me in various ways.

There was not much new information yesterday. I spoke with my oncologist in Montreal, who has been great. As you might expect the Quebec and Mass General Brigham medical systems are not totally compatible (more on that below) so we can’t look at Monday’s CT scan side-by-side with the CT scan from August right before I left. The written reports look very similar but there is a discrepancy in language that could indicate something important, or it could indicate two sets of people looking at nearly identical images and using different words to say the same thing. #communicationstudies. New information will be coming though.

Monday morning I have a biopsy to remove some fluid from my lungs for diagnostic purposes. I am secretly-yet-not-secretly hoping that it might also feel good if they remove enough liquid/there is enough liquid to remove. I have no idea if I am phlegm producing machine or it’s all just in there.

Thursday I see a pulmonologist. Friday I see an osteopath who can also be my primary care doctor (apparently the only one in the area, very cool). The following Friday I should have an appointment with a world-famous oncologist with expertise in my kind of cancer. I totally trust my Montreal doctor, but I’m here and he’s not. And he is fine with coordinating care for my time here.

—

Some more scattered observations on for-profit healthcare vs Quebec system:

Privacy and access to information. US systems now have this whole “patient portal” which is amazing. All of your test results and info from visits, etc., in one place and everything can be downloaded as a PDF. This is so convenient–I could email my home oncologist my CT scan report, and could also send him blood tests or anything else he wants. However, in a year or two I TOTALLY expect to get an email from a random law firm saying something like

“We are writing on behalf of Mass General Brigham. We are very sorry to inform you that there has been a data breach and all of you data have been stolen. He is a free 1-year subscription to some suboptimal credit reporting service to check your credit. Sorry for sharing all those questions about your sexual identity, religious beliefs, and ethnicity on the dark web. Please accept our sincere apologies. This was unavoidable.”

My evidence for this hypothesis: Eisai Care (I am not making that name up), the for-profit company that oversees the distribution of my cancer meds in Canada, sent me a letter more or less like that (minus some details) earlier this summer. I now have a free 1-year subscription to a credit-reporting agency, and info about my cancer diagnosis and treatment are floating around on the dark web.

Meanwhile, Jewish General in Montreal lets you walk into a room and request any kind of documentation you want–in person. If you want to do it remotely, you have to do it by old-fashioned postal mail, provide lots of documentation that it’s you, and be very specific in your request. Quebec privacy law (and practice) is fantastic this way. But obviously it would be nice to get an exception for treatment crises like this one. OTOH: I love that I can neither confirm nor deny to parents whether their kid is enrolled in my undergrad lecture course.

IMPORTANT EDIT: I was wrong about something important. I knew that unlike in the US, all Quebec doctors have access to all my information, whereas US doctors may work in different proprietary systems. But I thought I did not have access. My friend Francine corrected me: there is a patient portal in Quebec, it’s just not as fast as in the US. (Up to 30 days for reports to appear for patients.) Like in the US, you still can’t get the actual images so that’s still an issue for my case specifically. I CAN’T BELIEVE I DIDN’T KNOW I HAD A PATIENT PORTAL IN QUEBEC UNTIL NOW!

Professional structures and power. The power structures are totally different here and in Quebec. Last night I got home from the hospital around 6:30pm. They sent my prescriptions to the Walgreens around the corner. There was an error. This makes sense because I was being followed by a lot of people at the hospital, and a resident who was not the primary person following me wrote up the order. I was supposed to get Albuterol, plus a cocktail including Albuterol that could be nebulized through a…nebulizer. The prescriptions that came through did not include an inhaler or a nebulizer, so I was being given medicines that I could not actually take. Also one of my meds was not covered by my health plan.

In Quebec, I don’t think doctors could simply prescribe medicines not covered by the health plan, but pharmacists would have the authority to give me a nebulizer even though it’s not prescribed. Here, it’s actually illegal for the pharmacist to do that (I think in general pharmacy may be a better job in Montreal than here, but IDK). However, the pharmacist got ahold of the prescribing doctor at 8:30pm on a Friday night and got the nebulizer prescription. I also got ahold of someone on the floor where I’d been admitted and they also paged a doctor. Neither of those things would be likely to have happened in Montreal. No inhaler for now but I should be ok. So in short, this kind of routine mistake can be fixed in both places but the process through which that might happen reveals a lot about power and resources.

Labour and infrastructure: Of course the US hospital was more beautiful, though I also think my Sherpa’s advice to go to the suburbs made a difference here. I got admitted to the ER fast. I somehow got a private room, but most people don’t, whereas I was able to simply get a private room covered in Montreal when I was hospitalized in 2010. On my admitting floor, nurses appeared to have a caseload of about 4-5 patients per nurse, which I suspect is much lower than something like the Glen or the Jewish. Quality of care was great, but also similar. I’ve had exactly one bad nurse in my life (Nurse Mike, covered in Diminished Faculties) and all of the staff have been kind and careful here and at home. Food was ok, probably better than Montreal but one doesn’t get hospitalized for the cuisine. Vegan options limited but that’s expected. I did have a person on the food order line at Wellesley Newton get surprisingly cranky with me when I asked for a ripe banana with my meal. But the response to the request was so disproportionate it was easy for me to say “that’s obviously not about me.”

The banana I got for that meal was pretty green but it was good the next day.

Probably Not Cancer Crawl: 26 Sep 2024

There are so many things I want to tell you about! This is not that post.

On August 26th I moved into my Cambridge apartment. Carrie and I drove down a U-haul, and up and down the stairs we went carrying boxes. Sure I got winded but it was normal. I walked around and did stuff. We saw people and ran errands.

By last Wednesday, I knew something was really wrong. I’d thought I’d had a flareup of concussion symptoms from all stress of moving. But now I was short of breath. Like really. Tuesday I was so tired I left work early. Wednesday, I spent a day fumbling around the US medical system and missing Quebec (“you can’t get a referral without establishing primary care first” “there’s a big backup on primary care” “no, that person listed as accepting patients isn’t accepting patients” “how about an appointment for your acute symptoms on December 31st?”). By Thursday a triage nurse on the phone advised me to go to urgent care. So I did.

After a $55 copay, some interviewing and tests, the physician’s assistant at urgent care diagnosed me with pneumonia and sent me home with antibiotics and cough suppressants. I stayed home Friday and took it easy over the weekend. Monday morning I was worse, not better: I got winded while standing up from a chair. On friends’ advice, I went to an emergency room in the suburbs, specifically Newton-Wellesley. I was admitted immediately. (Trouble breathing gets you well triaged.) They did more tests. No pulmonary embolism. My heart is in awesome shape. Even if I have aspirated some food because of my paralyzed vocal cord, that’s unlikely to be the cause.

But I was un-diagnosed with pneumonia. Or downgraded to maybe. After 3 days of oxygen, IV antibiotics, IV steroids (RAWK!!!!), and a suite of asthma meds, I can breathe deeply again. My oxygen levels are good enough that I can walk around and don’t need extra oxygen.

I may be released today or tomorrow, depending on how I do on stairs and what doctors say.

But I still don’t know what really wrong with me. I have what can best be described as a “terrifying Old Jewish Man” cough. I could write you a book about phlegm, but will spare you. When I lie down, my oxygen levels drop. The current theories are:

My cancer. This is the local favourite but I’m not buying it. This is all from doctors who do not specialize in cancer, or my very specific kind. I had a CT in August that showed no significant progression. I had another CT on Monday and the report reads almost identical to August’s. I want to hear this from an oncologist who knows something about my cancer. The American medical system is very, um, aggressive, and goes straight to KILL MODE with cancer. Except counterintuitively, I don’t know that my kind of cancer (army specific case) actually affects breathing despite its residence in my lungs. I talk with my oncologist tomorrow.
Asthma. I have it. Maybe I just need stronger treatments? I am responding well to a nebulizer.
Some kind of lung infection that’s either sorta pneumonia or something else. Probably bacterial. If it’s viral, I’m not contagious. I am responding very well to steroids and maybe antibiotics.
Allergies. Maybe something in the environment or my apartment.
Very low possibilities: long Covid, obesity hypoventilation.

I will probably go home today or tomorrow. I will have followup with a pulmonologist next week, and this experience has also netted me a very useful referral to a local oncologist with expertise in my kind of cancer, which will be great for coordinating care with my Montreal team while I’m here.

The people at the hospital have been very nice. I may have actually convinced a nurse here who is a budding drummer to start her own punk band. I’ve had lots of medical professionals come through and learned a lot about my body, including some useful revelations about my swallowing. Yesterday morning felt like office hours before a paper was due, except it was all medical people coming to see me.

I’ve had a great support network here even though Carrie is three time zones away. She’s on a major grant deadline so this added to her stress big time. We discussed her flying out but in the end decided against it. All those years of teaching disability studies (#carewebs) have totally disinhibited me from asking for help. I have some old friends here who have been fantastic. One is a chronic illness sherpa who has helped me navigate the system. Two friends from Montreal who are also here on sabbatical, have driven me here, waited with me, and broken into my apartment for stuff. But also other fellows have really shown up. I got three lovely cards from the Institute with lots of great personal messages, along with some very nice personal emails. Someone broke into my office and got my computer so I could write this note. And I’ve had as many room visits from friends as I can handle.

I had a very intense medical year since last September and fantasized about just maintaining while I’m here and focusing on being a person. But with chronic illness you don’t get to choose. At least I should be back to sabbaticaling next week.

A few other thoughts on healthcare here vs home:

I am very glad to have a sabbatical gig with a proper health plan to cover all this. I a lot of other US sabbatical fellowships don’t come with full insurance. That would have put me in a position where I’d have to go back to Montreal for proper care. I would not want to be un- or underinsured in this system.

Despite all our complaining about Quebec healthcare, a place like Cambridge MA with a great reputation for healthcare has a lot of the same issues in terms of a new person accessing it. I was told that private equity sent a local hospital into bankruptcy here and issued a bunch of people out into the system needing primary care doctors. There was massive burnout and systemic breakdown during Covid, etc. etc. But also like Quebec, once you’re in the system, the wheels seem to turn a lot more smoothly. (I will be testing this over the next few weeks.)

The US healthcare system asks a lot of personal and somewhat invasive questions at intake. Race, ethnicity, religion, religious beliefs, history of drug use, lots of detailed question about alcohol (lol one drink in the last month), though oddly not much about chronic illness or disability (would seem more important for intake into a medical system?) I got asked about my gender identity and sexual orientation so many times I reached a point of saying “I am cross appointed in gender studies, I honestly don’t know how to answer those questions anymore.” Which is actually true, but a story for another time.

—

Image desc: a video monitor with waveforms for my heart rate, oxygen levels, and breathing rate and numbers next to the waveforms.

Bonus nerd content: I’ve been very intimate with this here monitor in my room for the last three days. There have been a couple moments where it almost looks like the three waveforms on my Buchla 208: spike waveform (the top), rounded square wave (bottom), and folded sine / triangle (middle). It’s not so close here but it’s the best I can do.

Ten Things I Learned From Will Straw

On Monday June 15th we had a wonderful retirement symposium for Will Straw. In addition to co-organizing, I was charged with giving an overview of his career. I concluded with a list of 10 things I learned from Will (lest you think this is original, Sheryl Hamilton had a similar idea). There will be a longer publication in the future, which may or may not include these 10 points, so here they are.

Always be reading. Will reads with a passion—and speed—that few others can match. But especially for mid-career academics, when so many other things are vying for our attention, Will’s commitment to books is something to be emulated. We are only good at our jobs if we are immersed in others’ ideas as well as our own.
Take advantage of where you are. Wherever you are, there are going to be multiple scenes. They will all have something to offer you, if you let them.
Follow your interests wherever they may lead you, especially if they lead you to the flea market over on St. Michel, or its metaphorical equivalent.
Step up when it’s your time to do so. Academic communities are fragile things, and we all need to contribute to keep them thriving.
Especially while you’re in the process of stepping up, ask what your time is worth. I think he originally said this to me as we were hopping into a taxi instead of taking public transit somewhere, and perhaps it sounds a little bourgeois. But for those of us with the resources to make these kinds of choices, sometimes it’s worth spending a little more to do a little more.
Meet and learn from the next generation of scholars, not just the last.
Use travel to continue your education.
Beware of empty ambition. For instance, if you are worried about the work you’ll have to do if you actually get the grant, you probably shouldn’t apply for the grant.
Don’t let the bustle of academic life take you away from everyday small pleasures or your bigger passions. Find a way to keep it all in proportion.
For those of us with these nice professor jobs: be aware of your privilege and exercise gratitude. Never be bitter or resentful. Be principled, but never give in to the urge to grandstand.
Linen.