The new normal implies that I know what normal is

I saw my oncologist today and things are basically the same as last month. I didn’t get my tumour marker readings but will update this if and when they come in. My tumour marker is down again, to 4.1. My next CT is in 3 months and we’ll see how that’s going, but it seems the drugs are doing what they’re supposed to do. I showed the doctor the moonscape under my right big toe but alas all there is to do is use a topical cream.

As to the rest, I know people with chronic illness and disability talk about “the new normal” but as of yet, I haven’t figured that out because my body feels like a variable. In part, it’s because the drugs I’m on have shifted in kind and dosage–this time around we are messing with a blood pressure medication because my BP is a little high. In part it’s just unpredictable: I have good and bad days with my hands (though my nail beds always hurt when I trim my nails now…weird), with sleep, with my feet (#moonscape), with energy. I can tell you what “normal” is like today, or this week, but in three months, who knows?

On the last, I’d say that’s what I learned most about this past month. I’ve had a couple weeks with back-to-back 13 hour days, and I mean 13 contact hours (teaching, meetings, events, doing stuff with people), not 13 hours of work while sitting at my desk. I used to be able to do that and maybe feel a little tired the next day. I’m a classic extrovert in that way–I draw energy from people, and I used to love it. This month, I was pretty wiped both times, and my recovery time is longer as well. So I need to adjust how I schedule (and overschedule) myself. I’ve always been an overscheduler, but the goalposts have moved, so I have to figure out where to aim the ball now. In the end, it will probably mean taking meetings on more days to spread it out, which will cut into time to do other stuff during the term (since I need to be vigilant about time off in order to be on when I need to be on), or taking fewer meetings. I do use Skype now and then but it’s not great for my voice (land line is better), so it’s really a fallback rather than something I want to do more of.

Here are some hot Canadian election takes for you

  1. As always, remember that an election is just an election. It has real implications, but party politics is the tip of the iceberg. If you want real change, there is a lot of organizing and work to be done outside the party politics system.
  2. I am relieved the conservatives didn’t win.
  3. It is impressive that after Trudeau’s last long stretch: India, buying a pipeline, SNC-Lavalin, firing the first Indigenous justice minister, brown face, black face, that he actually was able to stay prime minister. That says something either about the status of the liberals in Canada, or the abilities of his team, or how truly awful the Scheer conservatives are.
  4. We should be VERY concerned about the foreign money and fossil fuel lobby money behind right wing propaganda campaigns: pictures, rumour bombs, memes, hashtags, and bots.
  5. No party had a serious plan for decarbonization. WE SHOULD BE VERY CONCERNED.
  6. Alberta’s “alienation” is a complex phenomenon: it is a historically conservative province. On that level, I don’t know what to do about that. People are going to vote for values I find abhorrent. But: Alberta is also at the very centre of Canada’s petroleum economy and the reason the Canadian dollar is essentially a petrocurrency. I am not one for appeasing conservatives, but any serious decarbonization policy also needs something that can be pitched to people who work in and benefit from the industry. I don’t mean the rich: I mean the people who actually do the work of extraction. Retraining, using their skills for renewable energy, anything that make sense. I do get being scared about losing your job in the current economy. Scheer’s climate change denial resonates as a jobs program. So, there should be an alternative jobs program.
  7. Jagmeet Singh was great and should stay on as NDP leader. But the NDP needs a more concrete plan if they want to retake seats in Quebec, or build a base elsewhere and they need to do better on climate change.

And now…some good news

Tl;dr: It was a drug interaction. And my tumour marker dropped even more. I’m recovering now and eating normal food again. I love flavour!

I figured it out on Weds the 25th, as I was having a downright painful morning that made me 45 minutes late to my undergrad seminar. Between that and flying, I was pretty dehydrated by the time I got to Minnesota. I have no idea what clicked after all that time, but I realized something had indeed changed before I got sick. It took just over a week for the drugs to get out of my system, but I am now back to normal, except for needing some recovery time. The Minnesota trip was hard physically — I actually cut it short a day so I’d have time to recover here before this past week started, and I’m glad I did. I don’t think I’ve ever done that before. It was absolutely the right thing to do.

Okay, so about that drug interaction…

I’m on more different medications than I’ve ever been in my life, and they keep changing, so it’s hard to keep track. When my stomach troubles started on the first day of school (September 4th), it appeared to me that nothing had changed to occasion it. But in fact, exactly two weeks before that, my laryngologist had switched my proton pump inhibitor from Nexium to Dexilant because “it’s new and it’s stronger.” It took 4 weeks of misery for me to figure out that that could have been the cause. This is complicated by the fact that I have multiple pharmacists and doctors — so while everyone should have a full picture of my situation, nobody except for me really can or does, unless I am hyper vigilant in reporting and following up.

I emailed my oncologist a week or so into the diarrhea madness and he wasn’t terribly worried. But when we spoke on Thursday (I am only seeing him every 4 weeks now), he apologized, saying he should have realized it was Dexilant that was the problem, and that he never prescribes it to his patients. It was nice of him to apologize.

I have to say of all the side effects, this is the one that made me most miserable. Why, you might ask, versus the pain that means I need glove to cook or play bass, or blood pressure, or foot blisters, or dizziness? Or the brief periods of noun loss? Simple: none of those interfere with my enjoyment of life.

Imagine spending a month working full time and leading your normal life while you have the stomach flu. It’s usually a periodic thing that lasts 2-3 days and people take time off to recover. I pushed through. Maybe I shouldn’t have, I don’t know. It was brutal at time but because I thought it was the Lenvima, I was determined not to give up my daily life to the drug. At some point, I will write a post on what a friend of mine calls “self-overcoming.” It’s going to be something I’m thinking a lot about in the next few years. It’s also something that’s discussed a lot in disability circles: just because you feel like crap is not always a good reason not to do things. But sometimes it is.

While trying to complete a scheduling exercise for next year (and worried that my condition was “the new normal”) I also learned how shockingly few rights faculty with disabilities have at McGill. But that will be for another post.

Eulogy for Gary Thomas

Gary Thomas, one of my undergraduate mentors at the University of Minnesota, passed away on 29 August. I happened to be in town for the memorial on September 28th (I was at a conference upstairs!), and Richard Leppert–my undergraduate advisor and Gary’s close colleague, friend and confidante–asked me to speak as a representative of his students. I tried to reach back into my age 19-23 mindset to write this….


I’m here talking with you today because of how I met Gary.  Back in 1989, the U of Minnesota honours program had installed a 2-credit course called “Intro to the Arts and Sciences” where profs from different department would come speak to us about their discipline.  I was a first year undergraduate that year, trying to figure out what I was going to do in university. About halfway through the term, Gary came in to talk about the new humanities curriculum they were installing.  He was spellbinding lecturer on any subject, but I remember the hook that got me interested when he did a psychoanalytic reading of Star Trek that involved Spock being the brain, McCoy being the heart, and Kirk being the penis. My immediate thought was “you can do that in college?” It wasn’t too long before I was a humanities major.

My first class with Gary was his first ever offering of Gay Men and Homophobia in the modern West.  I think in 1991.  This was the first time he’d taught it and it was offered at night so that people who weren’t full time students could take it.  It was a major community event. People from all over the queer community flocked to the class.  I was maybe one of two straight men in the class, and in 1991 homophobia was still very thick and powerful, and it was still probably a rare or odd thing for straight men to mix with gay men.  When classmates asked why I was there—which was a frequent event in the first couple weeks—I replied that it was my first opportunity to take a class with Gary. Everyone seemed satisfied with this as a plausible answer.  That class was incredibly important for me as a teacher now, with students who are not only queer but genderqueer, gender fluid, and all shades of different.  On one level, they need to learn how difficult and dangerous it was to be gay way back in the 20thcentury—and I make a point of reminding them of the hard work of ACT UP, queer nation, and the queens at Stonewall (whose rebellion has taken on new meaning in the wake of trans liberation).  On another, the envelope-pushing nature of the class got me ready to make the same kind of space for my own students. And I have also tried to use my professor position to be useful to communities in Montreal.

Gary was a role model for me — a self-actualized adult, living the life of the mind, but with plenty of other interests besides his job, and who was confident in who he was.  When students came to his home at the end of a term somewhat later in my career, I remember being impressed at the kitchen and the organ. Our tastes run differently, but I now live in a place with a nice kitchen and a lot of musical instruments. Draw your own conclusions. And he was totally unpretentious. I remember he once said to a group of us that he was proud that he had students calling him at home—remember, this was in the days before email at universities, and he was unusually accessible. He encouraged students to be themselves around them and he made things easy for us in the right ways.

Gary also gave me some of my first tastes of academic research: I helped build a bibliography for his then brand-new Music as Discourse class.  Later when he suddenly had another research need, I got the call to go through old issues of Christopher Street in an archive in St Paul.  That was for Queering the Pitch, the first book of queer musicology. I remember being over the moon when I opened it up and saw my name in the acknowledgments. But Chip Whitesell, another Gary student who is now my colleague at McGill in the School of Music, reminded me that that work was a revolution in musicology, and that for gay musicologists, it wasn’t just the academic substance that mattered, it was about making space in the field to be out.

We didn’t keep in touch that much after I went off to grad school, but I remember visiting him once in Folwell Hall, with my partner Carrie, and we were joking about the awkwardness of some of our straight male professors. In fact, my education at Minnesota had failed to prepare me for graduate school in only one important way: large swaths of the rest of the world had not caught up with what was happening at Minnesota in those days.  Gary was a huge part of that. But more importantly for me, he was something every university student fresh out of their parents’ home needs: an adult I could look up to.  He wasn’t perfect—more that once we had to reschedule an appointment because he wasn’t so good at keeping a calendar—but even his faults spoke to his love of life. I will never forget his power as a lecturer, the gentle way he made space for us to just be, his unending kindness, and his love for life.  Rest in power, Gary!

Drugs update for September

That was an intentionally innocuous title.

So the last post was nice and sentimental about starting school. I meant everything I said, but it is true that that post is not an entirely accurate reflection of what Wednesday September 4th was like for me. This one will be slightly darker. It will also involve explicit talk of excretion, so I am posting this as a warning to readers. Only keep reading if you don’t mind some body humour. This definitely crosses the TMI boundaries.

The short version: I am in week 2 of a very upset stomach. I hate it because it interferes with things. There is a name for my condition that sounds like a bad punk band.

Other side effects are more or less the same. Except I think the Lyrica was making me tired, so I went off it. It was also “fixing” the wrong pain–it did nothing for my feet or my hyperaesthesia. I’m already feeling more perky so I am inclined to believe my own theory.

That’s all the news you absolutely need. But as you know, part of my therapeutic practice is to report things in detail. So there is more to read, but if you read it, you can’t un-read it.

Scroll down at your own risk.

Here is a picture of a cat, to take up space.

Now I am going to take up more space…

Fuck Andrew Scheer.

Now I am still taking up more space.

Still here?

Okay, this post is about a phenomenon called the Lenvima Shits. It is not a punk band, though it should be. It is the reason why I uttered the phrase last week “I miss being nauseous.”

As you may know from prior entries, Lenvima messes with people’s digestion. Mine has slowed down radically, so I basically don’t eat much of anything after 8pm and nothing at all after 9 or I wake up with indigestion. I have had bouts of nausea on and off, which come and go, and are actually strongest when I’m hungriest, which is a weird phenomenology: one minute “I feel sick” the next “OMG I’m starving how about some nachos” and then “I feel sick” again, all within a couple minutes. Well, that’s all gone now.

You may recall that I treated my Europe trip as a sort of test for the semester. In a lot of ways it wasn’t, but I put my body under a lot of stress figuring I could bail out at any time. It convinced me I was ready to teach in the fall. Tuesday, before classes start, I was thinking “I can do this!” I was all excited.

So: it’s Wednesday morning. I’ve posted a sentimental post on this very blog. I get on the metro to go into school: it’s meet the grad students and then go into class. Everything is fine.

Then all of a sudden, it isn’t.

Oh. No.

Every time the train slows down, I am in agony. In my calmest possible voice, with my eyes watering, I say to Carrie “I’m going to get off at Berri-UQAM. Where do you think the nearest bathroom is?” I exit the train. I go into UQAM. I am clearly not the first person to suss out the right bathroom in my time of need. I make it to the toilet and feel like my entire insides, along with whatever metaphysical stuff may make up a human subject, have exited my body.

Frankly, I’m fine with being rid of whatever parts of my humanity I lost if it meant I no longer had an urgent feeling of needing to go to the bathroom. I am, in fact, as relieved as the people who may have need for the needle deposit bin in my stall.

I take the Imodium in my bag. It seems to work.

On my way out of UQAM, I express my solidarity to my striking workers, though even the word “solid” is upsetting to me at this moment.

I go into school. I don’t eat anything. I look suspiciously even at my water mug. But apart from that, the rest of the day is actually great.

But now, it’s a recurring thing. If I don’t take Imodium, I am sick — it’s not always full-on diarrhea but lots of intestinal cramping and surprise trips to the bathroom.

I try the BRAT diet for 3 days. Nothing helps. My discussion group suggests not worrying about it. Peanut butter helps, someone says. So I try peanut butter. That seems to work. Things start working again. Then they don’t. More Imodium. And on and on.

So, if I want to go out now, it’s drop an Imodium.

Teaching and meetings? Imodium.

Bar mitzvah? Imodium.

Band practice? Imodium.

My rule about side effects is that they have to exist for a week in order to be real.

Welcome to the desert of the real.

I am actually loving being back in the classroom (or my office) with students. That part is a sheer delight, but this whole “in the term” thing is a lot more physically demanding than I expected. I couldn’t hack it with the tiredness I was getting from the Lyrica–I would be fine and then hit a wall, and it was a hell of a wall. And I did not think I’d need an extra hour in the morning to get out of the house just to make sure my digestive situation isn’t going to cause a riot on the metro.

I have learned that there are people who more or less take Imodium every day and that that’s ok as long as I drink lots of water. This is from calls to the pharmacist and from my discussion group. This isn’t that surprising, since in cancer world, people take all sorts of drugs in amounts you’re not normally supposed to. I have also learned that people eat the weirdest things while having the Lenvima Shits, because, well, if it doesn’t matter what you eat, why not?

I’m still being conservative, but there are times (SO MANY ADS FOR PIZZA DURING THE US OPEN) that I have contemplated other foods. I may give in at some point.

In the meantime, I feel like one of those tech bros who want to live to 120 years old by being on some insanely restricted calorie diet.

They did say weight loss is a side effect. I’ve been dropping the pounds but I suspect we’ve moved from a drop to a freefall in the last 10 days.

20 Years In

I taught my first class as a professor in the fall of 1999. As I enter class today, this will begin my 21st year as a professor (my first class as a teacher was in fall of 1994, so that’s 25 years ago, not 20 but whatever). Undergrad and grad school were 10 years combined for me. This feels like a long time. Everything I can say to describe the feeling sounds like a useless cliché, or just a jumble of confused emotions (which would be correct).

Lots has changed since I walked into my University of Pittsburgh office sometime in August 1999 and found an “officially up to date” computer with no sound card (they weren’t wrong in terms of most professors’ needs at the time), and an unplugged 300 baud modem. I don’t have a scientifically accurate sample of how students have changed over the years, since I spent my early career at mid-level public US institutions and am now at a fancier Canadian institution, with all that implies. What I can say is the politics have shifted mightily, and contrary to all the whinging about millennials (I don’t think this year’s entering class even are millennials) the students are an absolute joy to work with. They’re serious, engaged, and ready to talk about complex and difficult stuff. In the 1990s people warned us new teachers about not mentioning the word feminism as it would turn the students off. Well that particular problem no longer exists, at least in media studies courses.

I always joked that my career goal was to get to “graduate student,” minus the poverty and angst. I am still happiest doing the intellectual parts of the job: conversations with colleagues about their ideas; conversations with students about their ideas; reading and writing and workshopping my ideas; doing research. It is also often a challenge preserving those parts of the job against the bureaucratic-paper-pusher-middle-management part of being a professor, which seems to grow each year as well. My own goal now is simply to focus as much as possible on the good or at least meaningful stuff and try and give less energy to the rest (especially now that I am acutely aware that I have limits in that regard).

If you know anything about the current politics of university, you should be able to tell from this entry that mine is a case of tremendous privilege, both in a global and in an institutional sense. So today, I’m taking a moment to be grateful both for the experience I’ve had, and for the positive role that higher education can play in the lives of the students who pass through our classrooms on the way to other things. That’s one of the main reasons we professors do what we do.

Here’s some good news

The drugs appear to be working.

Last week I had my semi-annual CT scan, and I got my results Thursday. The two largest tumours have shrunk by just under 1cm each. Now, before you get too excited, remember that remission is not on the table here. The goal of this therapy is to stop the cancer from growing. This is a chronic illness scenario, not a magic bullet scenario (at least on this protocol). So the shrinkage is visual evidence, confirming the blood evidence, that the Lenvima is working.

Yes, I am absolutely delighted.

I also don’t have to see my Onco for another month. So things are getting routine.

Side effects report:
I started taking Lyrica for my hand pain. The first week I started forgetting nouns again, though not as much. Nothing changed. 10 days in I was all like “this is bullshit, I’m getting off this” and the next day I woke up with no tingling in my hands. BUT: it does nothing for hyperaesthesia–my hands are still super sensitive. AND after talking with some people, I’m starting to think it may be the source of my tiredness. So, I may go off it. We’ll see. Tingly hands is better than needing 90 extra minutes of sleep per night and tiring out more easily.

Digestion is still a wild card from day to day. I will spare you the details.

I am still having foot issues, though epsom salt baths help. Carrie and I have cooked up all sorts of metaphorical descriptions for what the bottom of my heels look like.

I still get dizzy really easily. I am probably going to bring a cane to tonight’s Galaxie/Tribe Called Red show to see if that helps in stand up rock show contexts.

Blood pressure is still a little on the high side.