Super Bon!

The title actually should be “you have to live your life.”

“You have to live your life” is one of those phrases I have heard a lot, to explain or justify a lot of things, since I came to Quebec in 2004. I don’t know its origins, if it’s an Anglo translation of a French cliché, or if it’s a uniquely Anglo Quebec thing to say.

Perhaps you’ve seen those surveys going around social media “How isolated is everyone right now?” with a 1-5 scale.

1: Living normal
2: Being cautious, but still going out
3: Going out as needed, mostly staying home, still seeing friends and family
4: Very limited, only going out when unavoidable and very careful contact with people
5: Full lockdown

I’d said “3.75” but I’m downgrading to 5, or 4.75 if walks outside count. Carrie’s now responsible for shopping in the neighbourhood.

I’d been staying home with one exception since the 12th, when Quebeckers were told to stay home.

The big exception is that I’d planned to record this weekend and next weekend with Volte. We’d booked studio time months in advance. We’d rehearsed the shit out of the music (though in classic Volte style also added new and difficult things to songs shortly before recording). I was confident and excited to do it.

I’d asked my oncologist if I could do it. My rationale: I could drive to the studio and back. I’d be six feet apart from everyone almost the entire time (it’s a big space) and a recording studio is sort of like quarantine anyway. It’s certainly less risky than going to the grocery store or pharmacy.

Last Thursday, he agreed, and told me I could do it so long as nobody else was sick. Friday morning he called back and said new directives had come down and I shouldn’t do it.

He told me they have new data from China that say people with cancer–whether or not they’re undergoing treatment at the time–are more susceptible to covid-19 and are more likely to have a worse case of it if they get it. So no recording for me. It is only the second time he’s ever told me not to do something.*

Every other time I’ve asked him if I could or should do something, he has always said “you have to live your life.”

But sometimes, you just have to live.

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*The first time was when I went on The Drugs. He banned travel for a few months to make sure I didn’t have any adverse reactions.

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.

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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.

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.