Super Bon!

So, here we are in quarantine. My medical condition is pretty stable, and my spirits remain good. I’m excited to get back to writing my book this week, and I played a bunch of music this weekend. I am making the best of things, and being grateful for the comforts I have.

I’m suddenly doing a lot of telemedicine. I really don’t mind. It’s good of the doctors to keep me out of the hospital and I don’t miss the travel or sitting in the waiting rooms.

Mood is good. Feet are so-so. Hand pain is alright though after a lot of instrument playing today my fingers are really sore. Rock and roll.

There is one problem, however, and involves defecation, so if you don’t want to read about me and excretion, this is your chance to click off.

Here’s a little thing from the internet apropos of nothing in case you want to click away.

So for the last 4-5 weeks, I’ve been having diarrhea on and off. It’s a Godfather 3 situation where every time it seems to get better, I wind up back at ground zero the minute I try anything serious, or perhaps a day later at best. So I have had a few good meals over the last 4 weeks but it’s always after some recovery and not for more than a couple days a shot. At first I thought it was a drug interaction, like in September. I stopped my newest drug, two weeks ago, and nothing changed, except that I missed the effects of the drug (an asthma pill that doesn’t mess with my vocal cords). So today I returned to the thread I started in September in my patents’ group and I discovered two things, both of which are relevant to me now.

1. A couple people noted that Lenvima made them effectively lactose intolerant. I have found the same thing. I am not allergic to dairy, but high levels of lactose don’t work for me all of a sudden. This is mostly fine being “more vegan plus goat and sheep cheese” but I’m not willing to stop eating mac and cheese and deep dish pizza for the rest of my life/however long I’m on Lenvima. So I’ll figure something out, or just do it once a year and suffer the consequences.
2. I learned that people take Immodium proactively. Again, I might have learned that in September, but I’d forgotten I’d learned it. As in, if they’re in a spot like I’m in, they’ll take it before they eat. I am so sick of rice and white bread, that I decided to try it tonight. Two Immodiums, then I cooked pasta with porcini mushrooms and assorted vegetables. IT WAS SO NICE TO EAT VEGETABLES AND HAVE FLAVOUR. My last real meal was Friday for Carrie’s birthday (and there was cake), and that was after a couple days of recovery last week. So far so good. No pain, nothing. I will be experimenting with this. UPDATE: this worked. I slept through the night. I feel ok. I have no idea what this means long term.
3. Bonus: it turns out you can get a hangover from diarrhea. Who knew? A couple times it’s been so bad I haven’t really been able to drink anything until my stomach settles down, and I went to bed dehydrated. The next morning I was fine after some Gatorade or coconut water, but wow, that’s a messed up feeling. All the unpleasantness of having too much to drink and none of the benefits.

On the upside, I’ve been making the “well, at least I’m not full of shit” joke a lot around the house. Because where else would I be?

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.