Some good cancer news and hospital gossip

Just got the results of my CT scan yesterday, and there is no progression of disease–the spots are just hanging out in my lungs. That was the plan and it’s working. The tumour marker in my blood is also dropping. Also good news. I’ll be reducing my frequency of visits to once every six weeks–not sure if that’s because of the extra virulent Covid strains or because I’m being triaged down a tiny bit, but I’ll take it. Next scan is in six months, and again we will be hoping for no change in the spots.

In not-new side effects news, the big attention-getter the last few weeks, aside from ever-present fatigue, is difficulty regulating my body temperature. I go to bed roasting hot, wake up in the middle of the night freezing cold, and have a hard time getting warmed up or cooled off, as needed. Plus I’m so out of it when I wake up it takes awhile to figure out that I’m shivering. I’ve now got a bin next to the bed with a heating pad, hoodie, extra socks, and sweats, and we’ve got flannel sheets and a gazillion blankets on the bed that I can take off or put on as needed. And sometimes that’s not enough. It’s the best I’ve figured out so far. My doctor thinks it’s not related to the meds, but the people on my Facebook group think otherwise. Someone recommended “a big British hot water bottle” but I have not found a source for such a thing here. Another option is electric blanket. I literally have no idea what the room temperature is half the time.

Speaking of the people on my Facebook group: it’s a pretty consistent set of discussions as new people show up with the same questions over and over, and regulars tell their stories of disease or treatment progression. Sometimes someone dies, as you’d expect. But for the first time since I joined, this week, there was a “how long have you been living with metastatic thyroid cancer?” thread. At first is was the usual 10-20 year horizon. Then one badass woman chimes in that she’d been living with it for 53 years! Obviously, there’s no telling for any one case how it will turn out, but that certainly a longer horizon than I’d ever seen. Sure, it’s the “good cancer”* but stage IV is stage IV.

In other news: my doctor got Covid. He’s incredibly buff. Like extreme sports for fun buff. He was careful but works in a hospital, so the chance for even a tiny slip or bad luck is much higher. He said he had a fever for 11 days and hadn’t been that sick since he was a child. He says he’s feeling better now. But Covid is serious shit. Two of my friends also got it while being very careful. People: try not to get Covid!

I’ve only done two slightly “high risk” activities (for me) in the past few months: 1) I went to the optometrist to get set up for computer glasses because my neck is killing me. It was fine for store behaviour, but some of the other customers were not as careful about 2 meters as I would have liked, I was in there longer than I wanted to be. If I have to sit and wait again, I’ll probably go stand outside. 2) And the CT scan also felt a bit dicey. People weren’t really able to be fully 2 meters apart; everyone has to briefly take off their mask to drink the three servings of the not especially delicious chalky drink that they give you; and occasionally someone is wheeled in on a stretcher who does not have any mask on at all. All the staff are super careful, but it is a non-optimal situation. I’ve been wearing a KN-95 mask or that and a cloth mask over it, but still, it’s weird to feel that such basic activities are in some sense dangerous.

*Fuck that “good cancer” bullshit and, as always, fuck cancer.

Three Defence Strategies for Living at Work

This is written by an academic for academics, but maybe it’s useful for others. Tl;dr, here they are:

  1. Only have work email on your work computer and keep it in one place in your home. If you have other devices, keep it off them.
  2. Order your off hours.
  3. Have Zoom free workdays.

Sometime in the summer when it was possible to see people in person outdoors, my friend Derek (quoting someone else) said we academics are not working from home. We are living at work. I found it a profound and generative realization. Now as the year has gone on, despite the fact that I love most parts of my job, I have been feeling a bit more violated by the combination of confinement and specific demands on me. So I’ve built some separation from work through other means. It seems to be helping.

  1. Like many academics, in addition to my computer, I also have a phone and iPad. Those other devices used to have my McGill email on them, though I would shut it down for vacations. I did that for winter break, and I just…kept….going. So when it’s 9:30 at night and I’m watching a dumb show, and my mind wanders, and I scroll the internet, I don’t accidentally see anything for my job. The computer pretty much lives on my desk (though it’s a laptop so it can leave if it has to). That means work emails get dealt with in one place.
  2. I also have structured off days and times. I think parents already do this (though they also need downtime of their own). But not having kids, all time is potential work time, which is not good. I’ve been losing half a day to a day per week this term to fatigue or medical appointments or something else, but I only “make up” the stuff I have to make up; and I always make sure to have 1 day on the weekend where no “work work” gets done.
  3. Back in the “before,” research university profs like me were not constantly always available for meetings. We had days blocked off for working from home and days for being on campus (note: other people used their offices differently–this is just me). Maybe you’d take a phone call or something but there was a big difference between on-campus and off-campus days, and the off-campus days with longer stretches of unbroken time are super important for writing, course prep, grading, and letters of rec (among other things). Carrie installed Zoom-free days in the fall, and I followed.

Not everyone can do each of these things, but since I can, I’ve tried them, and they are helping a bit.

Sleepytime New Year

Here we are in 2021. I inaugurated the New Year in bed, reading. At one point, I checked the clock, it said 12:04, I rolled over and went to sleep and woke up 10.5 hours later.

Another month, another cancer update: blood are stable, side effects are basically stable, except holy shit am I tired. I think I felt like this at the end of last fall too, so it’s not a big shocker or anything. But the way the drugs multiply my fatigue and sometimes end my days when I don’t want them to is my current biggest complaint. The hand pain no doubt contributes to it some days as well.

My 2020 was better than lots of people’s. My main affects were horror at the state of the world and gratitude for my relative privilege given what things could be like. Sometimes I was angry. Sometimes I was happy. I know people who have had people close to them die of Covid–but I’ve been lucky that way. I have plenty of friends and acquaintances who lost jobs, job opportunities, or other access to income because of Covid. It fucking sucks.

I am fortunate. I have a steady job and income, good healthcare, the ability to properly socially distance, and a good home life with Carrie and the cats. Given the alternatives, I was glad to be teaching online, and all things considered it went as well as I could have hoped for. I also learned some new skills, producing at time 2 podcasts a week for my students. I’ve been giving the old landline a good workout, and it gets me into a comfy chair, usually near a cat, and away from the screen. The other thing I got good at it not working at designated times. I took days off because I needed to for both physical and mental health. That is a skill I’ve been developing over time, but Covid forced me to really build proper boundaries around my time, lest I always be available for everything, while simultaneously trapped in my (admittedly, very comfortable) apartment.

The downsides are predictable: I miss lots of things about being able to go out in the world — friends, playing music with my two pre-pandemic bands, shopping in the neighbourhood, etc. As an academic I have lots of experience working from home but working entirely from home definitely is not for me — there were more than a few times where I felt like things were invading my domestic space that I would normally keep outside it. Boundaries are good, it turns out.

I do worry about the world that we will re-enter at the end of the pandemic, though. Not because of the “everything has changed” but because of the insufficiency of our institutions and relationships. More on that another time.

My resolution for 2020 was to “press record” more and while I did, I didn’t do it as much as I planned. It was a good musical and audio year, though. I am continuing to improve at touch guitar and synthesizer programming and after all the podcasting I am very fast in Logic. Due to Covid, Carrie and I have formed a duo and are slowly writing some songs. We have 4 fully arranged and fragments of a couple more. We had originally thought we’d try and self-record an EP over break but came to our senses and chose downtime instead, which is what I needed.

I don’t make resolutions about my academic work because I have a setup that works for me and I mostly just do it. I was on sabbatical in the winter and spring, and while I lost research and presentation travel that I badly wanted to do, but after the obligatory couple weeks going “holy shit” about the lockdown like everyone else, I realized I had a job to do, and did it. I read a lot, and finished revisions on Diminished Faculties, which should be out in fall 2021. I redesigned three courses as well. Not bad at all.

My main resolution for 2021 is to keep my music space relatively clutter free, which is to say, “ready to cook” at all times. I often write amidst piles of books and papers, and that’s productive for me, but clutter interferes with music differently when I’m working with complex setups of modules or pedals. Especially because the synth lives on a table, there were times where stuff piled up and that that kept me from playing because I’d have to clean up first. I have to treat it more like the kitchen.

I would also really like to find a writing collective to be part of again. I co-write with people all the time and love it, but I’m thinking of something like Bad Subjects where there’s an online venue (other than this blog) where I can post occasional thoughts that are substantial but not long and not necessarily scholarly. Something like The Battleground or Crooked Timber or a group blog of some sort. That said, I am not going to push it. I have to find the right people and the right organization.

Other than that, I just want to keep doing what I’m doing. I have a fantasy that I’ll get the vaccine in May and then can take most of the summer off (except for talks I agreed to give) to savour being in the world, something I haven’t done since 10th grade. Dunno how realistic it is, but a man can dream.

Iatrogenesis and Gratitude for Online Teaching

It’s been about 10 days since I spoke with my oncologist (yay, telemedicine, boo: overwork). My tumour marker is trending back down after a month back on The Drugs: just above 10. Everything else looks good. The visit to the cancer floor was par for the course. The place was more organized thanks to the private security people managing patient traffic, but the nurses doing the phlebotomy are clearly way overworked, and either burnt out or nearing it. It’s really a bummer to see. And I don’t think I can bring them anything because of Covid protocols.

I’m back on all my blood pressure meds and BP is stable. And all the side effects are back. I had a brutal wave of fatigue a couple weeks back, combined with stomach problems, including having to teach the big class right after having an experience that can best be described as emitting lava. I don’t recommend it, but I managed ok. This week I’ve passed out on the couch after dinner a couple times and one day this week I had to lay down for half an hour in the afternoon. I am making do and in some senses, teaching online is probably both the problem and the solution: it’s making me more tired, but at least I can crash out for a few minutes if I need to.

I think everyone is tired from online teaching (and OMG meetings–#livingatwork) this term, and in that respect I’m no different from anyone else. But it’s not just that (see: the “everyone feels that way sometimes” square in Ableist Bingo).

Ableist Bingo card featuring cliched ableist statements life “everyone feels that way sometimes” and “You don’t look sick/Disabled”) — as always, the centre space is a “free space.” Hat tip: Lena Palacios.

I am actually grateful that I started the term off the drugs, even though a vacation from them might have been more fun in the summer. I’m not sure I would have survived the first 3 weeks of term otherwise. I am mostly able to muster the energy I need to do the things I have to do, it’s the things I want to do in the interstices that are falling by the wayside. And I hate waking up after 9 or 10 hours of sleep feeling tired.

I want to write more about online teaching and will have some things to say about the mechanics of it in an upcoming post. Here it’s mostly happy stuff. I feel good about it. I am really fond of my students and am really enjoying the meetings and conversations with both undergrads and grads. I know how to make a podcast lecture now and am pretty good at it, though I will have to work on my “um”s if I ever really want to be a media personality. But the undergrads seems to like the podcasts.

The graduate seminar discussions have been great. I’m exhausted afterwards but look forward to it every single week. And I’ve been enjoying the “backchannel” on the chat. We’ve had amazing visiting speakers, and co-teaching has been a real balm for the spirit (as has working with my TAs in my undergrad class). I wish I could actually socialize with my grad students — we normally throw a potluck at the end of term — but for now we will have to contemplate Zoom Pictionary or some other social contrivance, or just leave it be.

I realize online learning hasn’t gone well for everyone (and I am just talking about the university level–I cannot imagine the struggles of primary school teachers, students, and parents). But for higher education, we have a real reason to make it work. The alternatives are bullshit Covid protocol classrooms that fail as in-person operations and expose people to unnecessary risks. I’d rather be “doing-alright-considering-the-circumstances” online that doing anything that could lead to an outbreak as infection rates are spiking here and many other places. My efforts at teaching online–including some spectacular failures, as well as the successes–have extra meaning because they are about keeping me safe, and keeping lots of other people safe. My parents had to make all sorts of sacrifices as kids living through the Great Depression. All I have to do is stay the fuck home and do my job.

Lenvima vacation review/Cancer update

So, I’m back off vacation from the drugs. I started up again Monday. And I went to the Jewish yesterday. Here’s what I can tell you after 3 weeks off the drugs:

  • The sore on my foot healed, which was the point. Carrie said my feet look good. My doctor said my foot looked good. So that worked.
  • My tumour marker went way up. September, it was .8; October it was 17.1. This isn’t any thing to be worried about (and “may even just be some secretions” <–no idea what that means) but it does suggest the drug is effectively suppressing the processes by which my cancer cells grow and that without it, they will begin to party in most unfortunate ways.
  • I gained a couple pounds. This is not a surprise. I lost my lactose intolerance, and was fully intent on enjoying pizzas, etc., while I could. Also I had my full appetite and no diarrhea for a month.
  • My blood pressure dropped.

My other side effects also pretty much disappeared. No hand pain, no foot pain, no weirdo fatigue, and I could regulate my body temperature. IT WAS GREAT. How great? It was “Dear Tripadvisor: the beaches were perfectly calm and sandy and we had them all to ourselves and the food was amazing and different every day and oh my the sunsets and the staff at the resort all mysteriously spoke English and did I mention the pool and the gift shop. Five stars!” great.*

In fact, last night when I was suddenly, inexplicably hot, Carrie had to remind me that was a side effect of the drug (sometimes I’m hot, sometimes I’m cold). This Ellen Samuels piece on “sick and well time” came out last month and more or less exactly captured the experience for me. It was miraculous to be back in my “well body” for a few weeks, and I couldn’t even fathom some of the things I had been feeling only weeks before. The extra twist for me is now in that tumour marker number: when I feel better, I am sicker. When the cancer is under better control, I feel worse. Iatrogenesis: it will fuck with you.

I do not feel bad about going back on the drugs. I understand this is the deal, and in fact, there was a point in September where Carrie was suggesting things with cheese on them and I was like “nah, I’ve had enough.” It’s always hard for me to tell if I really get something emotionally (as opposed to intellectually) but in this case, I think I do.

Speaking of things I don’t feel as bad about as I should, let’s talk about Montreal’s code red (which puts us in semi-lockdown. So I’m at the Jewish yesterday for my bloods. First, the difference from last time: there is a private security guard directing traffic on the cancer floor. Here is a sentence I never in my life though I would type: I am so happy they hired a private security firm. There was just one guy, but he was well-trained, seemed to understand that he was working to help the nurses, and made an effort to put patients at ease, keep track of whose turn it was, etc. But when people got agitated, which started more or less the moment I got off the elevator (in point of fact, I couldn’t exit the elevator right away because of people just sort of standing where they shouldn’t have been), he organized people and was the person whose job it was to tell people what to do even if they didn’t want to hear it. Better him than the nurses. So that part is good. They still need more people working in the blood centre but there’s no place to put them.

But everyone is supposed to wear a mask the minute they walk into the Jewish. The. number. of. noses. I. saw. was. not. good. The minute they were past the entryway where you get checked, people were pulling out their noses. ON THE ELEVATOR IN A SMALL ENCLOSED SPACE. WTAF? People pulling off their masks to talk loudly to someone across the hall. Again, WTAF? This is so not cool! It’s a hospital! Staff are risking their lives to help you, have some basic consideration! Just because you’re old or have cancer doesn’t mean you don’t owe others some basic decency. I’m not usually a scold-people-on-social-media type but I am honestly beside myself about the level of disregard for others on display.

So if people can’t get it right in a hospital setting with clear instructions and staff everywhere modelling proper behaviour, it’s no wonder Montreal is going into semi-lockdown for the next 28 days. No social gatherings of any kind. Though apparently you can still go shopping (?) and children in schools don’t have to wear masks (?). You can get an on-the-spot fine $1000 ($1500 with “service fees”) for being out in the park with people not in your household. This is a drag, especially because I’ve been able to enjoy a few outdoor gatherings with people at a safe distance (though I also attended two events where people did not keep a safe distance–the temptation to be near people is strong, I get it) and outdoor band practice has been a wonderful consolation for not being able to play indoors. But I understand why it’s happening.

As a friend put it to me, “I do not get the problems white people have with masks.”

Some other tidbits:

  • My oncologist is still optimistic about vaccines starting to be available in the spring, and thinks that not everyone will need to get it in order for it to be effective (this part I honestly do not understand, but am sharing since presumably he’s in the loop).
  • I’ll be back to phone appointments for awhile
  • We both expect my tumour marker to go back down now that I’m back on the drugs. Nobody is particularly worried.

*Your obligatory footnote: going off the drugs coincided with the ramp up of online teaching. Which was insanely hard. And coming off sabbatical is always an escape-velocity kind of thing. So it’s not that I wasn’t tired but it was a different kind of tired than fatigue. I asked Carrie about it and she said with the fatigue my personality recedes. When I was tired, I just acted sleepy. So there you go.

Here’s why online teaching is sort of like chaos right now

I just got a query from a student reporter, who asked, “did McGill provide professors with enough Zoom training this summer?”

I can only imagine what students are seeing!

The institution provided a lot of training.  So much so that by mid summer I was “webinar-ed out.” Specifically, credit must go to Teaching & Learning Services, who really rose to the occasion.  (And if I didn’t think they’d done a good job, I promise I would tell you.  I’m not shy about criticizing the university.)

BUT, there are a number of other factors contributing to difficulties right now:

1. Zoom wasn’t designed as a teaching tool.  It still isn’t, and some basic things (like the TAs and I going from group to group in our meeting yesterday) involve workarounds, and that is according to Zoom’s own manual!  Keep in mind that in March, the company wasn’t any more prepared to deal with the pandemic than any other institution.  They basically got lucky because their interface happened to handle group meetings a little differently than (eg) Skype, Microsoft Teams, and other options.  6 months sounds like a long time but it’s not when you’re talking about the sheer scale of the undertaking.  On the first day of class at many US institutions (10 days before we started) Zoom crashed.  

2. No amount of training or practice can fully prepare anyone for dealing with a new technical or social arrangement.   It’s like performing on a musical instrument or playing a sport.  There’s practice, and then there’s the heat of performance.  I’ve been putting some part of my courses online since the 1990s (back then you had to hand-code a course website), and I have never worked harder to get my courses up and running than this term.  

3. Now scale that up to a whole big university, and add in wide range of technical skill-levels and literacies among faculty.

So if the students are looking for someone to blame, I’d blame the virus first.  Covid cost everyone something.  If our main complaint is about some rocky first classes, we should count ourselves fortunate.  

That said, I would expect things to smooth out in a couple weeks as people get used to it.*

EDIT: Also, people should feel free to complain to their friends and loved ones! The rule in our home is we can complain about anything we want whenever we want if it makes us feel better.

*One thing I didn’t say in the reply that I wish I did was that faculty are also people, and if you’ve got care responsibilities, it’s really hard to do a full-time job at home on top of that right now. Also, we should just expect stuff to go wrong. It will!

Cancer update: an unexpected vacation

Last week I had my monthly meeting with my oncologist. I would have written sooner but HOLY SHIT ONLINE TEACHING IS A LOT OF WORK. Also I spent the weekend building a bed and wiring up a pedalboard (unfinished business from the summer). So here we are.

Everything is going well. My tumour marker is nice and low, my blood pressures are stable, and I totally forgot we didn’t get my neck scan results last month. Turns out they were fine too.

Getting my bloods done was a thing, though. I went in to the Jewish General Wednesday morning and the cancer centre was a zoo. Or rather, there were 2-3 nurses working for drawing bloods, social distancing rules in place, and a lot of unruly and angry elderly people. The patients were overwhelmingly white. Two of the nurses were black. At one point there was a woman who was refusing to move. People were crowding the door, and “taking a tone” with the nurses like they were slacking. I can’t believe the amount of rudeness and outright hostility they are having to put up with. They are doing their jobs well and carefully. I understand people have appointments and everything is behind schedule, but if I’ve figured out that if your bloods are delayed at the Jewish, your doctor is too, surely the other patients can as well. I was not sure how to intervene but if it happens next time I’m there (my October blood appointment is at 9am so I imagine it could well go down like that) I will need a plan in place. All I did this time was tell the nurses I appreciated them and was sorry for all the BS they had to put up with. But it was a really racist scene.

The big cancer news is I’m on a vacation from Lenvima for the next couple weeks. I have a sore on my foot that will not heal. So the idea is that I’m doing well enough to go off the drug for as long as it takes to heal. Then I’ll go back on. I’ve been off since Friday night. I already had to go off one of my blood pressure meds as I was getting super dizzy Saturday while building the bed (Carrie wound up having to do more bending because I kept almost falling over). My digestion is changing as well–for the better. Tonight I ate a salad and…so far so good. And my foot isn’t all healed but I went for a walk tonight without taping it up and there was no pain, so it’s already better. My hands also feel better, though they’re still a bit sensitive. But I played bass for a few minutes today sans gloves and…my hands didn’t mind.

I’m curious what else I’ll notice going off it. I’d been wondering how I was ever going to get to eat a pizza (you know, the kind with mozzarella) again. Well, I think soon I’ll be able to once my stomach repopulates its biome. That’s probably not how stomachs work but whatever, you get the point.

I’m rooting for my foot to heal, but perhaps not so fast I don’t get to optimum pizza readiness. I think I’ll also get some ice cream while I’m at it.