Health Update: Mostly Fine, Some Defecation-Related Content

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?

Locked Down Reviews: The Best Soup

Okay, we’re here for awhile. I’m going to start reviewing stuff. The usual caveats apply. My tastes aren’t yours, they might suck to you and certainly cannot withstand political scrutiny.

Today: a soup, but not just a soup.*

Do you have more beans than you did a few weeks ago? Probably?

Do you have more time than you did a few weeks ago? That depends on the presence and age of kids in you household and your employer’s work-from home policy and whether you’ve had to construct an online course from scratch.

If you have beans and time, I am going to tell you about the Best Soup, which comes with a special bonus for vegetarians.

People have been posting pictures of food on social media. I like food, and I like pictures of other stuff, but I don’t like pictures of food that much. Yes, I’m glad you’re cooking, but if you’re cooking, I want to know how to do it. Otherwise it’s just a picture of something you did that I didn’t do. Now, pictures of PETS, that I am fine with because I don’t want to know how to cook your pets.

Onto today’s business.

The recipe is here. It makes a lot of soup, so either eat soup for awhile (this is what we do when we aren’t serving it to friends because IT IS THE BEST SOUP) or freeze some, or halve it. It’s difficulty level is, well, Punjab. You double cook things.

The reason I am recommending this soup is not just that it is delicious, but that if you like to cook, it is also an education. At least it was for us.

If you are vegetarian like I am, you may have discovered that store-bought vegetarian boullion is not all that great. It’s fine. But it doesn’t do to things that meat boullions do. A fresh vegetable stock, on the other hand, can do amazing things that meat stocks cannot in terms of depth and complexity.

The sachet: This is where this recipe shines. Once you learn how to make a sachet, it’s a skill for life. A few weeks ago in THE BEFORE Carrie had made some rosemary cannellini** beans which were good and we ate. But there were some left over. So I made a minestrone with them, and I used a sachet. It was the best minestrone. As a bonus, you can put parts of vegetables you might not eat (like the green parts of leeks–recipes never call for them) in a sachet and they can work their magic.

Also, you can make small sachets: stuff aromatics into that metal tea ball in your drawer that you never use. It works for anything with a cooking liquid.

A note on beans: do you need to use the expensive Rancho Gordo beans? No. Yes, I have spent the money and found that they are actually delicious. But we’ve done this successfully with navies and great northerns and bean perfectly happy. BAM!

This is where, if you missed the initial Corona Hoarding, you are actually in luck if and when you acquire your next dry beans. The problem with most store-bought dried beans is that they have been sitting on the shelf forever, or at least for far too long. You want fresher dried beans. The other tip, less relevant now but more relevant in more plentiful times, is to buy your dried beans from a place where vegetarians shop (bulk stores, Co-Ops, etc), since they tend to cook more beans. Vegetarians aren’t the only ones, but High Bean Turnover is key to good dry beans from the store.

*I started a review on pants but my feelings on pants are so ambivalent right now it’s hard to write anything cogent.

**WordPress keeps trying to correct words like boullion and cannellini (which it converts to cannelloni). If this it’s the bad at food names, how do all those people have all those cooking blogs stuffing up our search engines?

“The economy basically works.” No, it doesn’t.

Last week, I saw the U.S. fed chairman Jerome Powell utter these absurd words on the news in response to the precipitous decline in the stock market and the swelling ranks of unemployed people.

No, it doesn’t.

[Tl;dr: capitalism sucks. If you have money, give some away right now.

Here are some organizations I like. Find your local equivalents.

Moisson Montreal–Montreal Food Shelf

North 99’s Cancel Rent, Evictions and Mortgage Payments during COVID-19 Petition.

Montreal Resto Workers’ Relief Fund

Montreal Rapid Response Fund “for sex workers, service industry workers, freelancers, and those who are most affected by COVID-19” (please note on this one: the anonymous nature of the project precludes full accountability so there’s a slight risk here in giving, but they really do seem on the up-and-up)

So…”the economy basically works”? Powell was talking about the stock market plummeting, specifically. His assumption is spectacular for its willful ignorance: the 2008 crash was some kind of “flaw” in capitalism, but the 2020 crash is a result of circumstances “outside” the economy and so it’s not the economy’s fault.

The idea that a natural cause, like a virus, is an externality to the economy is part of the problem as we look forward to what will happen to capitalism in the 21st century. Beyond the coronavirus and whatever other epidemics will happen (and they will), environmental catastrophes are already happening, and will continue to happen. These are not externalities to the economy, but rather the results of that capitalist economy. Yes, the virus is actually killing people and the solution to that problem is not entirely economic. But the economic havoc currently being “caused” by the virus is mostly human made: capitalists and corporations have no savings despite squeezing workers, consumers and citizens for profits (see: airlines); states have insufficient safety nets limited by false choices about what they can and cannot “afford”; and even in countries with socialized medicine, hospitals have been run according to cost-cutting measures rather than the mission of serving people (to be clear, I’m talking about budget decisions here, not the everyday work of hospital staff, most of whom care profoundly about the people they see). Even the mass firings are a result of how the economy is set up: it is “better” for even small businesses to fire their workers so their workers can collect unemployment rather than keep them on the payroll when they can’t pay them.

Better universal healthcare, real disaster planning, resource stockpiling, universal basic income, real estate markets regulated according to the right to affordable housing would have cushioned the blow for a lot of people. It won’t protect them from the virus, but it would help protect them, somewhat, from the economic cost of the virus.

The idea that the stock market is any indicator of general economic health should be thoroughly discredited by now, though it’s reported that way on a daily basis by almost all mainstream media outlets. It is true that far more working people are invested in stocks than, say, 1929, where it took up to four years for people to feel the full effects of the crash. But even that reality is the result of socializing risk and privatizing benefits. Where before middle class jobs came with pensions, now retirement is a form of investment for which each individual is responsible, even though there is no way most individual investors could possibly compete with the people at the top of the market. It’s something like a socially enforced gambling addiction.

And capitalism itself, as we well know, is a kind of Ponzi scheme. I read a letter to the editor this week where a retired person argued against a rent freeze because rent on the units attached to his were his only income. If we had real old age pensions and a right to decent housing, that would not be a problem either.

In case you are wondering what has occasioned this rant, it is not that I saw these two things in the news. It is that I just paid my bills for this month. For a lot of people, this month’s round of bills will be where the shit starts to hit the fan. I am incredibly privileged. I don’t have to worry about any of these things myself.

But so many people have to. It is just wrong.

In the meantime, if you’ve got money, spend some of it to support local business, and give some of it away.

Locked-Down Reviews: TV

Okay, we’re here for awhile. I’m going to start reviewing stuff. The usual caveats apply. My tastes aren’t yours, they might suck to you and certainly cannot withstand political scrutiny.

Today is television shows. There are minor spoilers included but nothing that would ruin it for me if it was the other way around. There is a lot of pointless violence in what we watch. And then we are all like “wouldn’t it be nice to watch something with people talking” and we do that for awhile. YMMV. This is just stuff we watched recently, which appears to be a pointless violence phase.

Babylon Berlin: The. best. opening. credit. sequence. ever. I usually skip opening credits these days, but I could watch an hour of the opening credit sequence. The show is good too. The 1920s mostly look like shit but occasionally they look amazing. This seems like the right balance, and frankly, it appears that they may be ahead of the 2020s right now. The anachronisms are wonderful if you are a complete nerd, which I am. For season 3: there were no drum kits, Germans didn’t use condenser microphones until the 1930, and insulin wasn’t fast acting. Women do not generally fare well. Also, I love knowing where all the places in Berlin are. Bonus: before each episode Netflix puts up a warning about sex, language, and smoking, but not violence. Someone is usually killed before the opening credits.

Star Trek: Picard. Pretty good. I get it: “a new, darker Jean-Luc Picard.” I am mostly entertained. I could do without all the TNG cameos, but whatever. Borg do not generally fare well.

Manifest. I’m a science fiction fan who will watch pretty much anything about time, space, or dreams. Ideally in some combination. So I started watching this show. It is terrible. Every week, I ask myself why I am watching it. The men are all wooden and the women are all whiny. Everyone looks the same. The writing and dialogue are awful. They spent a whole episode mourning a character who turns out not to be dead, which is the apex of pointless TV writing. As the mystery of the passengers’ disappearance for 5 years gets ever more pointlessly complex, I keep saying things like “if this time travel turns into some kind of Hobbit shit I’m done.” And yet, I keep tuning in. Carrie just groans or surfs the internet to humour me.

Better Call Saul: Note perfect.

High Fidelity: I loved music, but I was not the cool guy at the record store. I did not look cool, I did not listen to what was cool at the time even in an alternative way, though my friends and I had lots of shared tastes. The dude clerks listening to Nurse With Wound (ACTUAL EXAMPLE) or some out of tune local band (ditto) would makes faces at me and say dismissive things if I asked for recommendations. All this is to say I love music but I do not identify with the characters in the novel, the movie, or the show even though some people seem to think I am supposed to. Zoë Kravitz is great. The music is updated but seems all wrong for who the characters supposedly are. I keep waiting for a scene in her apartment where she puts on a record and it’s Lenny Kravitz “Let Love Rule.” That would be meta-awesome.

Intelligence: A post-Wire crime drama little known outside of Canada but very entertaining. The first show we are re-watching in a long time. Both Carrie and I have become fans of shows where you are presented with apparently competent people working in ensembles, and then very quickly everything goes to shit. On Berlin Station I think someone actually yells “everything has gone to shit” into the phone at some point, which was outstanding. Nobody does that here, but it is wound very tight. Women mostly do not fair well except for the protagonist, though the men mostly hate her too. [UPDATE: Now that we’re finished, I can say that season 2 takes a bit of a nosedive towards the end. The plot about water is fine, but one minor character gets WAY too much screen time (the decision makes no sense, honestly) and it kind of drags the whole thing down. Still watched it all and I have no regrets.] We might rewatch Breaking Bad next to see if we can tell the exact point when Walter White becomes evil.

Homeland: Claire Danes has an infinite number of facial expressions. I have stopped trying to count them. Also very suspenseful. Yes, the show is still racist. I am not proud. But at least it’s not like 24 where somehow it got us to start rooting for Jack Bauer to torture the human rights rep to get emergency information. In a particularly good episode, characters will say things like “there’s not enough time.”

Probably irrelevant news shows: The Circus (which WordPress keeps autocorrecting to “the virus,” draw your own conclusions). Before everything got shut down, it was a weekly news show about American politics. Two journalists and a former speechwriter with great access. Good editing and half an hour. Other newsy stuff we watch: NewsHour, sometimes (we call it “TV for Grownups” or “News Talking”); John Oliver, always (“news yelling”); Bill Maher, sometimes (also “news yelling”), an asshole and a hypocrite but has good guests sometimes and is sometimes funny; Pardon the Interruption (“sports yelling”).

…and a movie: Uncut Gems: We saved this for vacation in Barbados. We were very relaxed on vacation. This movie was not relaxing. In fact, it was so not relaxing that we had to “microdose” it over several sittings. Probably not good for the Jews.

“you have to live your life”

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.


*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.

Levimaversary

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.