A year ago today, I took my first dose of Lenvima.

It’s been a good year, all things considered.

The drug seems to be doing what it’s supposed to do — which is stopping the growth of my lung mets. It’s also brought with it a host of side effects, and the treatments for those side effects bring side effects. Still, for the past few months I’ve been quite stable, and so I think I’m at the point where I can actually step back and evaluate things. For the search engines, I’m on 18mg and have been since last May. My oncologist started me on 14mg, we went up to 20mg, and then tapered back down and haven’t messed with the dose since May 2019. The plan is to keep me on it “forever,” which actually means “until it stops working” or “until they invent something else.”

First and foremost, my mood has been overall good despite whatever issues I’ve been encountering. That’s not the case for a lot of other people on the drugs, and anxiety seems to be really common. So far, so good there. The only anxiety I’ve had has been in anticipation of taking the drug last winter, which culminated in a (retrospectively) hilarious nightmare involving the glossy pamphlet the drug company sent me. I think conducting this thing in public has been very useful for me in terms of getting the support I need from other people. My doctors have been great other than the fact that seeing all of them amounts to a part time job or hobby. Overall, I would say I’ve had a good year, though two semesters of sabbatical has a way of helping with that.

I do think of myself as somewhere between chronically ill and disabled now, mostly because I can compare my current condition with the condition from a year ago, but it’s effectively just “the new normal” and in some cases, a worse version of what people experience by dint of aging. However, I have also been able to live my life: teaching, travel, music, writing, seeing friends. Maybe a little less of each, and a lot less of some other things to make room for what really matters, but it’s worked out ok.

For people considering going on the drug, I’d say to do a genetic test if you can to find out your particular cancer mutation. But if it’s right for you, and you don’t have to worry about the finances of it, then it’s probably worth it. At least it is for me.

The cost of the drug is outrageous: it’s about $5500 a month in Canada (covered by my insurance so I don’t pay out of pocket) and over $22000 a month in the US. I get that drugs cost money to develop, but that’s what public funding for health research should be for….

Given that we’re social distancing for COVID-19 right now, I don’t have any party plans other than eating the bean soup I’m making for dinner, along with fresh baked bread and goat cheese. But I turn 50 this summer, so that seems like a good option to celebrate that I’m alive.

The rest of this post is just a catalogue of my side-effects for the curious and for the search engines.

I need more sleep. 9-10 hours instead of 7-8. This is a major adjustment. I now will sometimes sleep longer than Carrie, which before was more or less unheard of. I get tired more easily and when I’m done, I’m done. There’s no hidden “second wind” to access. Sometimes I wake up fatigued and not feeling rested. It will be tough when teaching two courses in the fall (unless they have to be moved online because the virus is still rampaging, who knows…) but I expect I will find a way. Last fall I severely limited travel and turned down a lot of other stuff on top of it, and that more or less made it possible for me to teach two classes. And I really enjoyed them.

How I’ve dealt with this: forced myself to do less than I am normally inclined to do, listen to my body most of the time so I can ignore it once in a great while for a special occasion.

In the last year I’ve had a variety of gastrointestinal adventures temporarily made worse by a drug interaction. I’m now taking probiotics and a separate supplement when I consume dairy, which helps. And a nightly colace, which also helps with constipation. I still have digestive problems about once a week and the cause is unpredictable but I just expect it. I could live on a permanent BRAT diet and maybe avoid it but there is no fun in that. My digestion is also slower, which means I need to be done eating by about 8:30 at night or I wake up with an upset stomach in the middle of the night.

How I deal with this: I learned that my old ideas about Immodium were no longer relevant, and I take it when I need it. For constipation, I tried a bunch of different things, but have found a colace before bed has been most helpful. And I just expect to lose some time to it each week.

My blood pressure is elevated and I take three different medications now to keep it down. They seem to be working. I get dehydrated easily, and am now allergic to the sun. Right before all the COVID-19 stuff took off in our part of the world, we returned from a vacation in Barbados. I joked that I was the “whitest person on the beach” and my afternoon leg covering on the beach chair was definitely of the “19th century sanitarium chic” variety, but luckily there are no pictures. From a couple unforced errors, I can confirm that my skin is much more sensitive to the sun.

I have a weird version of hand and foot syndrome. On my feet, I get blisters underneath blisters, and my left heel looks like the surface of the moon. On my hands, sometimes the skin just randomly peels off (like now), and I have some kind of hypersentivity, which means I wear nylon gloves to play bass and kevlar gloves to cook. A hassle but do-able. Sometimes the feet are painful enough that it interferes with my ability to walk but this is an occasional thing. If I’m not careful, I get throbbing, tingling pain in my hands. Except sometimes I don’t, or sometimes I’m careful and I get it anyway. I thought it might have something to do with pressure changes in the weather, but no. I lubricate my hands constantly and my feet as often as I remember. I tried various nerve pain relief pills, but they all made me forget nouns. I think the chronic pain probably contributes to the fatigue.

How I deal with this: epsom salt baths help, lots of the red Eucerin on my hands during the day, blue Eucerin on my hands and feet at night, and sometimes I wear cotton gloves at night as well. A regular dose of Advil can help when the foot pain gets really bad.

Other side effects: I get dizzy when bending over, and at some other times. I am sometime nauseous at random times. I get dehydrated really easily. I make a lot more typos than I used to.

How I deal with these: Metonia for really bad nausea, though usually it passes. I try to drink a lot of water, and once a day or so try to have coconut water or sugar-free gatorade or something. Typos? Well, fuck it.

And last but not least, weight loss is a common side effect, and I’m one of the few people to really benefit from it. I learned from some very diet-conscious people (not usually my relationship with food) about intermittent fasting, which is effectively what I do on days that I sleep in. It’s the first time in my life where weight loss seems easy rather than impossible, and I still very much enjoy food, so I’ll take it. I imagine at some point that will plateau, but it hasn’t so far.

..and a quick update on me

I’m fine. No really. You can write to say “hi” if you want, but you can worry about someone else (like all your friends who live alone).

I am “somewhat immunocompromised” according to my oncologist, so I’m doing what everyone else is, mostly staying home. For stuff outside the house, I am being careful.

I’ve been sleeping fine, and eating well, and reading and writing. I got bored watching the Sanders-Biden debate last night. I’ve got writing to do and recordings to nudge and an instrument to practice. There is a lot of stuff on TV. We have made some good food. The cats are happy to have us around.

We are not under self-quarantine, because we arrived back in Quebec several days before 12th of March, but we’re still playing it safe.

I’ll write a longer post about stuff on Wednesday, which is the 1-year anniversary of being on Lenvima.

…and some something about musicians

tl;dr if you care about music and musicians, and you have some spare money, now would be a good time to send it their way. You could buy recordings, subscribe to support people on platforms like Bandcamp or Patreon, hire them for a lesson or studio work if you are yourself a musician, or just give them money. A list of resources will appear at the bottom of this post.

This post is mostly addressed to my bourgeois friends and readers who are on salary and have secure employment.

A lot of people are about to have a lot of financial hardship. That sentence is supposed to end “because of the virus,” but it’s really not true. It’s because of how capitalism works. Tim Wu has a great piece in today’s NY Times about American Airlines squandering their profits and now expecting a bailout despite continuing to screw over workers and customers. And that’s pretty much every industry. I understand how someone living pay check to pay check doesn’t have cash reserves. I don’t understand how a corporation raking in millions of dollars does not. Well, I do, I just don’t approve. Ditto for the corporate welfare that’s happening right now. That money should be going to individuals and groups affected by rapacious profit seeking rather than those who have benefitted from it.

One group I am particularly aware of is musicians because I happen to know a lot of them. Most of the professional musicians I know make their living through touring, lessons, and other for-hire work. All of that is drying up fast–even lessons, because many people who take music lessons are also living pay check to pay check and have to cut back. Markus Reuter, with whom I’ve been taking touch guitar lessons (and will continue to) just posted a GoFundMe. For reference, he’s a prog rock musician, has toured with King Crimson and Devin Townsend, and is one of the best in the world at what he does. And he estimates he needs €10,000 to get by in the next six months. Chris Bates, a friend from high school who is a pillar of the Minneapolis jazz scene, just made a Facebook post asking people to buy his back catalog of records.

I’m seeing a lot of talk about live-streaming gigs for income. To me, this is a bad idea. The business model didn’t work in the first place, and it’s not something you can just wake up and do well.

But the real problem here isn’t a virus drying up a gig economy. The real problem is the gig economy itself. One person who has figured this out is Steve Lawson, who is about as niche a musician as you can get: solo, free improvised bass guitar, in the tradition of house concerts. I am not making that up. He’s a virtuoso in the old fashioned sense, but exceptionally, he is also a very skilled writer. Steve has set up a subscription service via Bandcamp with about 250 subscribers (yes I’m one–I also support a bunch of other musicians this way, and a few on Patreon). I’ll let him explain how this works and why this is a better model:

right now there are two places that do that better than all the others combined – Bandcamp and Patreon. It can be a massive struggle to get your listeners to care. People with huge audiences that are vaguely interested in you can find that their core audience who actually care is tiny

Focussing on that audience and its growth can feel insane. Like, why wouldn’t you try and reach out to the 500,000 people who’ve watched your stuff on someone else’s channel YouTube? Because the clickthrough rate to buying music from YouTube is appalling. It happens, but it’s not a solid strategy.

If you want and need a bunch of people who will sustain you, you need to work at it, and that may initially be really small. I have a HUGE diffuse audience of people who know my stuff through YouTube, ScottsBassLessons, Bass Guitar Magazine, radio etc. But I have 250 subscribers who sustain me, materially and spiritually.

Growing that 250 is what matters to me. Feeding them, nurturing them. So almost all my output is subscriber only. I could stick it all on streaming platforms or YouTube and it’d be worthless. There’s enough stuff of mine on YouTube sending people my way. I’m building the tribe. So many things about what I do are utterly specific to how and why I make music. They’re things that rely on me having had a 20 year career, an incredibly high rate of production, being a writer and audio engineer, collaborating widely. NONE OF THAT HAPPENED BY ACCIDENT.

Steve’s case is a personal solution, and it makes sense for him, but it points to the structural problem. The ideal model for supporting the arts, as far as I can tell, it essentially patronage at a cultural level. Rather than per-item sales, or per-gig payment, some kind of sustained income allows people to create freely. I don’t have a brilliant solution mapped out, except to note that most orchestras don’t turn a profit and essentially exist on this basis already. In the meantime, it’s on us, people who care about the arts, to support the arts.

(Some of you are closer to writers, or visual artists, or people who work on film sets–if they’re in the gig economy, they have the same problem, so be generous to them!)

…and don’t forget to give some money to your local food shelf as well.

This list will be updated as I come across more stuff

change.org petition for freelance artists to be paid

COVID-19 Freeland Artists and Writers, CANUCK EDITION

Virtual Music Events Directory

Steve’s top tips for running a live stream gig

Sweet Relief Musicians’ Fund (US)

American Federation of Musicians


Academic advice from cancer for the COVID-19 epidemic: let it go

Compared to the massive life and death issues people are facing, this is a tiny thing, for a tiny segment of the world. But with that caveat, it is still worth saying.

In 2009, I was diagnosed with a very aggressive version of papillary thyroid cancer. I had to bail on my courses, and lost the better part of an academic year (and more) to treatment for cancer. And if you have been following this blog, you know over the last year I have had to turn down all sorts of invitations and back out of some gigs I really, really wanted to do because of a new treatment regimen I’m on.

That’s what it’s like living with acute cancer, or chronic illness.

Now that many societies are essentially moving indoors and toward social distancing, events are being cancelled, courses are going online, and I see a lot of academics in my social media feeds worrying about the talks not given, the events not attended, the work that will be unfinished, the failure to deliver the same course online that they would in the classroom (or they worry that it’s a case of disaster capitalism on the part of university administrations, or they fume that universities are willing to do this but not offer basic accommodations to their crip students).

Maybe this is just deeper existential anxiety being worked out on the challenge to everyday life that we’re experiencing. But it may also be a conditioned response given how many academics go about their work lives (including me).

My advice: let it go for now.

This sounds like a privileged thing to say, and it is. But it’s also your only choice, even if you’re not enjoying the perks of tenure and stable employment. Even if it’s a big opportunity for you, like a job talk, you can’t control whether it’s cancelled or not. Let the work stuff go, little or big.

Letting it go is not a passive thing to do, it’s an active choice. For people who are driven, or perhaps anxious, it is incredibly hard to do. Certainly, it’s a self-preservation skill I have had to learn, and relearn, and am not particularly good at. As one reader pointed out to me, “you keep discovering you have limits.”

Maybe all that stuff your are worrying about will still be there when the current pandemic has mostly passed through. Maybe some of it won’t be. Focus on what you can do now for yourself and the people around you. Now is a good time to stick your head up above the chaos and busywork that, with each year, plays an ever-bigger role in defining academic life.

Let it go. You can choose to focus on what matters.

I hope to follow this up with a bit about how to support musicians, artists, and other gig-to-gig workers, but I’m still reading up on that.

Some bass players I have recently been enjoying

KT Chang: Elephant Gym.

Math rock! Chang has developed an interesting hybrid technique of tapping and melodic playing, and the band is happy to write around her bass lines (Elephant Gym is in fact a bass reference). Not everything is this busy or elaborate, but “Games” gives you an idea of her approach. I heard about these folks from a friend who also tells me there is a big Chinese post-rock scene. I look forward to learning about it.
Bonus: she’s also hilarious in an interview. From an interview with the band on their first visit to Manila:

KT Chang: I have a question, what is your favourite Filipino food? [Because] yesterday, we tried something. (turning to Tell and Tu) Do you remember the name? What we ordered yesterday. It had some shrimp and the noodle was soup … but it was not delicious.

Source: Bandwagon.asia

Junius Paul

He plays electric and double bass. I learned about him because Carrie has super gotten into Makaya McCraven, a jazz drummer (because Jaszziz covers the Chicago scene very well). He fuses lots of influences, and is great as a supporting player in lots of jazz settings, but he can also carry a tune.

He is also a tights model. That’s unusual in a bass player for sure.

Junius Paul on Makaya McCraven, ”Gnawa.”

I should do this more often.

Latest scan results are in!

Yesterday, I got the results from my latest scan (we do them every six months or so), and the metastases in my lungs continue to get smaller: two examples are a met dropping from 15x23mm to 13x21mm and another down to 23x17mm down from 27x20mm.  The report also says my gallbladder is “present and unremarkable.”  We should all want unremarkable gallbladders.  (For the record, my bladder is also “unremarkable.”). That’s about all the relevant news in the report. The tumour marker in my blood has dropped again. The drugs are doing what they are supposed to do.

It’s worth remembering that the goal here is to manage a chronic illness. The shrinkage in the mets is great and unexpected news–our goal is simply to stop their growth. Remission is not the goal: it is extremely unlikely in my case, at least given the state of the medicine today. So the mets probably won’t disappear altogether, and I am not looking forward to a time when I will be done with the treatment. It’s possible something else will be invented at some point, or I will need to switch to a different drug, the goal here is maintenance, not cure.

Side effects are there, as always. Last week, after 4 days and something like 12 consecutive meals out in NYC last week my stomach totally gave out. It was like fireworks in the hotel bathroom. And I was exhausted to boot; recovery time last weekend was slow at best. But the visit to the AI Now Institute was otherwise great and I will be back.

Meanwhile, back on the ranch, I seem to have a rager of a cold. I’m not sure, but I feel like this might be the first illness of this sort on the drugs. I’ve been up the last two nights coughing: in addition to the sick person cough, I have the cough of a person with a paralyzed vocal cord, and the cough of a person taking a drug with “dry cough” listed as a side effect. It’s a lot of coughing.

Medical News–not much of it is pretty good

Suddenly, it’s been two months since my last cancer blog. No news is good news! I had a CT scan on Friday which I’ll learn about in 2 weeks, and my tumour marker keeps going down. I had a heart ultrasound last week and my heart looks great. My favourite side-effect, weight loss, continues steadily. After dropping 6 pounds in January, my oncologist actually asked me “are you eating enough?” If you made a ranked list of least-likely questions for me ever to receive from a doctor or any other medical professional, “are you eating enough?” would be firmly at the top. For the record: I am eating enough.

Other side effects are more or less stable. The one most on my mind is sleep. Being on sabbatical, I have had the opportunity to sleep as much as I want/need, and I am logging a lot of hours unconscious. I used to be a 7.5-8 hours a night kind of person (sometimes more if I needed to catch up). Now I’m more like 9-11. I’m not sure I could sustain an 11-hour a night routine while teaching, and it starts to feel like I’m “losing time” for either work or leisure when sleeping for 11 hours (which means I’m in bed for like 12, since I like to read before falling asleep). I asked the doctor about it and he just said to enjoy it for now, and figure out what I need to do when I’m back in the classroom in the fall. I have had to get up to an alarm some days and so far that’s been ok. I’m also not often hitting an energy wall at night like I did sometimes in the fall term, probably because I’m sleeping as much as I want and not pushing it the rest of the time. The one exception was a conference in Ottawa, where I tried to attend everything and my body rebelled during the penultimate panel.

I am writing this from the airport, as I’m heading to New York City for the week to be at the AI Now Institute. So that will be a test for 5 days.

My hands and feet have their good and bad days but for the last few months they have been moving within a predictable range. With gloves, I’ve been able to play music enough to satisfy and without great pain. For the past 3 weeks or so, I’ve also been spending a lot of time recording other people doing vocal overdubs (and some guitars) which is a nice, totally painless way to be musical.

Digestion continues to be an adventure. Sometimes everything is fine, sometimes, everything is not, and it’s kind of hard to predict, except that I should pretty much always stop eating by 8:30pm. I lose about half a day a week to something going wrong, give or take. I’ve got a suite of drugs for every contingency, and am not shy about using them. I drink those little probiotic shots in the morning every day now. I have no idea if they actually help but I like to imagine that they do. I am tempted to get into more detail here, but I’ll leave it at this for now.

My mood remains surprisingly good. I’m sure being on sabbatical helps.