On the side effects of treatments for my side effects

I sometimes like to think of my current condition as “shitty puberty.” Not that puberty is a fun ride for anyone, but this experience seems like a cut-rate version. Instead of well thought out, illustrated “what’s happening to my body?” books and parents talking to me about things I don’t want to hear about, plus all my friends going crazy at the exact same time as me, I’ve got glossy pamphlets and internet forums with random advice. Okay, maybe this comparison isn’t working….

But in this post I will talk about what is happening to my body. There’s a long menu of possible side effects for Lenvima. Here are the ones I have so far:

–The hand part of hand-foot syndrome. We’ve been over this. There is peeling and constant moisturizing. There is hypersensitivity to texture and to heat. For that I use hand creme (Eucerin: extra urea!) and sometimes my hands are too slippery to take a credit card out of my wallet, and my touch screens are hideous. And gloves for things that didn’t used to need gloves. Sudden online shopping for oven mitts and barbecue gloves isn’t on the side effect list but I’ve got that one.

The ambient pain appears to be well treated by Gabapentin, but as I’ve already written about, that leads to forgetting nouns. And I think it’s blurring my vision from time to time. Which suck, when I can’t properly see the screen or read a book. I’ve been in a pretty good mood most of the time lately, but is that my actual emotional state or is it the excessive euphoria that listed as a potential side effect? Though if this is excessive euphoria, that would make me actually depressed….

–My blood pressure is going up. I started at 120/80, and got up to 150/100. So now I’m on blood pressure meds and am creeping back down. They make my legs swell. Also I have to pee a lot, which wakes me up more at night. But I’m supposed to stay hydrated. Did I mention they also make my balance worse? And the blood pressure meds and the Gabapentin can lead to dizziness?

–Lenvima can raise hell in your digestive system. I had serious nausea at various times. But I got to the point of taking my anti-nausea meds preemptively, then I would sleep for 10 hours a night and wake up tired. Drag. Though the cause of the fatigue could also be the Lenvima, or the Gabapentin, or the combination of everything. A week ago Saturday I woke up, had breakfast, forgot to take my nausea meds, and felt ok. And I wasn’t tired. So now, I take the anti-nausea meds only as needed, and I’m less tired. I’d rather feel a little nauseous a couple times a day than exhausted all the time. But something else is also sapping energy, so I’m not at 100%. But then, I am bombing my body with what is essentially a combination of the best of modern medicine and late-medieval alchemy. Did I mention entirely random indigestion? Constipation? I’ll spare you the details on the latter, but thanks to advice from my pharmacist, I have learned that they have made some impressive advances in stool softeners since the last time I needed one, and things are getting better there.

–Weight loss is also a side effect. I realize I am a special case, but I kid you not, this one is awesome. The Lenvima Diet Cleanse: It Really Works! I’m going to shut up while I’m ahead here.

–This week’s new thing is waking up super early. I started writing this entry at 6am, and I’ve been awake since 4:30. I’ve had early wake-up insomnia before on and off for years, but this is different. My usual treatment is if I’m up early enough, get a physical copy of Harper’s (interesting but not too stimulating) and read it in the living room under low light until I’m sleepy and go back to bed. My problem? I can’t focus my eyes well enough to read Harper’s. So instead, I’m catching up on my blogging.

My rule on symptoms is that they don’t exist until I’ve had them for a week. So it’s not a symptom yet. It may be because of the bladder action. It might be something else. Or maybe it’s not.

It’s too early to tell. </rimshot>.

Of Nouns and Pain

I am way overdue for an update and there are multiple posts to be made. Today’s topic is in the header.

First: no tumour marker news. The cancer centre at Jewish General was a mad house yesterday* and the blood tech somehow forgot to do a test for thyroglobulin. It’ll likely be another two weeks before I know how that’s going, but it’s been going well, so I am feeling optimistic there.

Second: pain news is mostly good. I have had a few headaches but nothing like the really bad one. The Gabapentin handles the ambient pain, though my hands are still pretty sensitive. The gloves work for bass playing, and I have a pair of giant Mr. Clean gloves for cleaning things to keep my hands away from chemicals. Doing laundry in gloves sucks but is better than if I don’t wear them. I am going to have to figure out something for cooking. Food and water are fine, but the open heat of sautéing vegetables is a problem. Last night I handled some pasta in boiling water and felt it afterwards in my hands.

I’m starting to get the blistered or calluses or whatever they are and the peeling that goes with hand-and-foot syndrome. But it’s relatively manageable. I’m just way more aware of it.

Third: Gabapentin is the reason I have no ambient pain. But one of its side effects is cognitive. Some people describe it as a brain fog, but for me, it is much more specific: I forget nouns, and especially proper nouns. And only in speech. Writing seems fine. At band practice on Tuesday we had a discussion about whether it was worse to forget adjectives (and presumably adverbs) or nouns. I argued nouns are way worse. Let me demonstrate. I will replace specific nouns with vague nouns like “deal” or “dude” in the following sentences, all of which actually happened the last week. Dude made traditionally be gendered but in our house it has been used to refer to cats and objects from time to time.

“Please pass me the silver deal.”

“I reread that dude’s classic essay on artificial intelligence and had a major realization.”

“You probably need to run that deal in order to fix your computer.”

Now, for comparison, let’s keep the nouns and replace adjectives and adverbs with “fuckin’.”

“Please pass me the fuckin’ remote control.”

“I reread Alan Turing’s fuckin’ essay on artificial intelligence and had a fuckin’ realization.”

“You fuckin’ need to run recovery mode in order to fix your computer.”

The second set of statements is much clearer than the first, and “fuck” is such a flexible word in the English language that I believe that if necessary it could replace all adjectives and adverbs with comparably less loss of meaning.

I rest my case.

Coming up in the near future: Fatigue and Nausea: notes on a dialectic; still later: Thoughts on what makes people with cancer angry, based on a tiny bit of evidence; even later: What does “tolerate” mean?

* People were seriously stressed out. Lines were long. It honestly didn’t seem that bad to me but people around me were all worked up.

ALSO, Public Service Announcement: if you are sitting in a cancer centre waiting room, it is not okay for you to blast country music from the tiny, shitty speakers on your phone. I NEED QUIET, I AM READING ALAN TURING. Thank you.

Foggy Middle

So we enter week six and things are a little unstable. The good news–very good news–is that my tumour marker is down to 10, from over 40 when I started.

The bad news is that the hand pain hasn’t abated. It’s different from day to day and I seem to have good days and bad days.

I saw my oncologist on Thursday and we discussed dropping down. We are taking two more weeks to see if I can get by on a higher dose, but right now I’m thinking I will drop from 20 back to 14 or 16 in two weeks when I see him again. The hand pain interferes with a lot of stuff, from bass playing to cooking, to concentrating enough to write something interesting. My writing has slowed to a crawl in the last couple weeks, which is not satisfying, but at least I am able to make music. And I have done some bureaucratic stuff that requires less concentration, so that’s good.

To his credit, my Dr reminded me: “remember, this is permanent, so you have to be able to live with it.” I’m taking Gabapentin now on top of everything else as an attempt to deal with nerve pain. I may get used to it (I was on it once before) but right now it adds to dizziness and nausea, or at least I think it does.

Also, Friday late morning we had a close call where I had an overwhelming headache. It was like nothing I’d ever experienced: a wave of intense nausea, followed by intense pain behind my left eye, so much so that I couldn’t do anything for about 30 minutes and had to lay down and close my eyes. It seemed like what my friends who get migraines describe. Also, the brochure for Lenvima says if you have a sudden acute headache, consult medical professionals. Everyone basically said to take some pills and lay down in the dark and not do anything for awhile. My Dr’s secretary said to go to the emergency room, but I suspect she has to say that, and I really didn’t want to sit in an emergency room for 16 hours to discover I had a headache.

I wound up dropping some pain pills and sitting in a dark room for an hour listening to avant-garde piano. It was relaxing, and the atonality of some of the compositions was reassuring somehow.

Today I’m feeling fatigued. So maybe it was my first migraine, or maybe the nerve drugs and the cancer drugs aren’t playing nice. Either way, it’s couch time for me tonight.

Hypersensitivity Phenomenology, or Touch-and Learn with Hand-Foot Syndrome

So I appear to have the “hand” part of hand-foot syndrome. It’s a relatively mild case, as hand-foot syndrome can be so bad that it’s painful to touch anything with your hands or impossible to walk. In my case, it’s just in the hands. I’ve got the tight skin, tingling and burning, and extreme sensitivity to touch. But it’s also been different every day this week. You saw the account from Monday. Tuesday it was different, yesterday it was different, and today it’s different (actually, today it’s better–at least so far).

As is my practice, I have thoroughly intellectualized the feeling in my hands, treating it as an opportunity for sensory exploration. Carrie is calling me a “super toucher” and indeed, my hands are incredibly sensitive to textures. Yesterday I was going around touching things to see how they felt. I have made a list of some of my discoveries:

Feels Terrible:

  • Towels, textured sweatshirts
  • Tortilla chip surface
  • Round wound bass strings (SEE EXCITING UPDATE below)
  • Textured steering wheel (yes, this is a theme)
  • Keys to my apartment
  • Washcloth, hot shower
  • Wool blanket

Feels Ok:

  • Cotton shirt, sweatpants
  • Tortilla chip covered in cheese
  • Low tension flatwound bass strings, synthesizer knobs, Linnstrument surface
  • Pens, tablets, iPhone, computer keyboard, trackpad
  • Bar of soap
  • Cotton sheet, comforter


  • Glass of ice cold water (not textured, preferably a pint)
  • Petting cats
  • Eucerin hand creme (get the creme, not the lotion)
  • Cool shower, washing hands with cold water (but apply lotion after)

So, in sum, if you have hand-foot syndrome, wear smooth clothes, hold glasses of cold water, take cool showers, go nuts on the Eucerin, and pet cats as much as possible.

Also, it turns out I do a lot of things with my hands. Today I have considerably less discomfort. I’m wearing the same textured sweatshirt I put on yesterday morning and it’s not bothering me.

Tuesday and yesterday were worse. In addition to the heat, tightness and hypersensitivity, I also had a painful sensation, like a cactus growing outward in all directions from inside my hand. Or was it a glove made of pins and needles? the direction is unclear? The pain was distracting but I didn’t want it to stop me from doing anything. So I didn’t. But I am hyperconscious of my hands, holding them up in the air in weird positions, rubbing glasses or tables, cradling them. It’s like they have replaced my head as the seat of consciousness and bodily orientation.

I queried my Facebook group and the responses weren’t encouraging. It doesn’t appear that not using my hands will make things better. Which is good because I didn’t let it stop me from playing bass at band practice Monday and Tuesday night. Monday night is Volte and by the end of the night the round wound strings on my bass were quite uncomfortable, especially if I slid, muted, or did anything with parts of my hands other than my fingertips. So for Tuesday I restrung one of my other basses with Thomastik Jazz Flats (which are a story in and of themselves) but they have a very non-reactive surface, and they are smooth and floppy. I took it to practice Tuesday and it worked great for Hard Red Spring. The sound isn’t exactly what I want but I don’t think I can afford to be picky when it’s a question of playing vs not playing.

Nobody reports drugs helping much. I’m using this Eucerin creme and it feels great, and greasy. How greasy you ask? So greasy I couldn’t get a credit card out of my wallet yesterday. I have been taking ibuprofen since it’s an anti-inflammatory and am at least getting a good placebo effect from that. Though since I don’t know if it’s a nerve thing or an inflammation thing or something else, it’s hard to know if that’s really the right pain killer to use.

Whatever works. I have no idea if this is my body just adjusting to 20mg of Lenvima or a permanent condition of being on 20mg, but the fact that it’s different every day means I need to reserve judgment. The first go-around in 2010 I learned not to take any non-debilitating side-effect or symptom seriously until it had been around for a week or more. There was a point where it was actually painful to taste onions (or when I lost all taste for sour), and that passed. So I’m just in watch-and-learn with this one for now. Or maybe touch-and-learn.

EXCITING UPDATE: about a week ago when my skin was peeling, I ordered some of these in black. (The white looks too Vaudeville for me.) They arrived this afternoon. I can now play round wound bass stings, and guitar, more or less pain-free. There will be a few adjustments but it’s good news to be sure.

Week 5: Good days, bad day, side effects

I saw my oncologist again on Thursday. Things continued to be good so I was promoted to 20mg. My tumour marker in my blood is a tiny bit lower than last time but no magical drop. Because I told him about my skin peeling off and being bummed to lose a callous, I also learned that he plays bass and is particularly into slap bass (not my thing but hey!) and listens to 80s hard rock. So I turned him on to Living Colour and Doug Wimbish.

I have to say, other than not liking spending so much time going to, waiting for, and being at doctors, I am completely at peace. The pills are not just not causing anxiety or distress, they are like some kind of totem or discipline. The fact that my work right now is primarily about writing is also relevant, since I always feel very centred when I’m writing. I have also had TREMENDOUS support from friends all over, and that’s made a huge difference. I will write more about the psychology or phenomenology of it at some point.

Today, it’s side effects. Some of this may be TMI. Keep reading at your own risk.

My blood pressure is going up slowly, and I think at some point I will be on BP meds (or have to lower my dose).

My skin has stopped peeling and has even healed some. But, there is new soreness and “tightness” in some places on my hands like the sides of my index fingers, which are also red. And they are sensitive, which of course means I can’t stop rubbing my fingers together in exactly those places. Happily, it’s not my fingertips, so typing, bass playing, and synthesizer-knob-turning should all be good for now. Advice about what to do if you have hand-foot syndrome includes such helpful tips as “don’t touch hard things–like tools.”

Also, there’s my digestion. I feel like I’m in a Nietzsche book. Every time the dose goes up, my body has to readjust. I don’t jump to conclusions about what’s happening for the long haul until it’s about a week in. A bout of diarrhea made me late to the endocrinologist appointment that I wrote about last week, though the immodium worked for that.

Nausea has been another thing. On 14mg I would get these rapid cycles–we’re talking about less than 5 minutes here–of nausea, then feeling very full (or vice-versa), then feeling like my stomach was empty and I am starving. It was weird but totally tolerable and because it happened so fast, I didn’t do anything about it. At 20mg (I’ve taken doses Th, F, Sat, and Sun), I’ve had more serious nausea, and an indigestion basically robbed me of my night’s sleep on Saturday night. Sunday for the first time I broke open the anti-nausea drugs. They seem to work ok, but not 100%. So yesterday was officially my first “bad day” on the drugs. I was physically uncomfortable but not miserable. This morning, as I type, there is some burning in my stomach but no nausea. I found with going on the drug, and up to 14mg that it took my digestion a few days to get used to the dosage, as well. It’s not an instantaneous thing where you take the pill and something happens (whereas calcium pills made me sick instantly when I had to be on those). It’s more like a generalized effect that gets easier over time.

The burning indigestion and nausea are not constant at all, so sometimes I’m able to eat normally, but overall I am eating less, which is how I guess “weight loss” gets listed as a side effect. So far, I haven’t radically adjusted my diet. I go to bed on a more or less empty stomach (indigestion seems worse at night), and I go easy on the acids and hot sauces. Once I have a settled sense of how it’s going to be I may make some more sweeping changes regarding how, when, or what I eat. But since right now I feel different every week right now and sometimes every day, I honestly don’t see the point in doing anything other than just noting how I feel, and as my touchy-feely surgeon says, “listening to my body.”

Onto Week 4: Let’s Kill Some More Disease

I saw my endocrinologist on Friday. I’ve nicknamed him The Terminator, because he kills disease. I’m told the usual scenario is that the neck surgeon is the hard-core one, and the endocrinologist is touchy-feely but it goes the other way in my world. Anyway, my tumour marker was down again over the previous week, so he was happy. And then, he told me the results of the double blind test on lenvatinib were even better than they sounded. I’m paraphrasing here, but “you get kicked out of the study if one of your tumours grows. But if the drug works for everything else, we can go in and take care of that tumour with radio ablation, radio surgery, or surgery, and then the drug can take care of the rest,” he said with a big grin. It’s true the Terminator didn’t take actual joy in his duties, but otherwise the metaphor works.

Meanwhile, back at home, I am at that stage where everything that happens to my body could be a side effect of the drug, or it could just be my body doing its thing. Probably the latter. I woke up with a cold on Thursday, which featured that “head full of bricks” feeling and of course my first thought was IS THIS THE FATIGUE THEY TOLD ME ABOUT? No, it was a cold. The skin on my fingers is peeling, which is probably just a stress reaction to the drug (I’ve had this before) but someone in my patients’ group was all like YOU HAVE HAND AND FOOT DISEASE. No, not yet anyway.

My oncologist said of the side effects setting in: “you’ll know.”

Advertising makes the internet worse; here’s what that means

I remember standing in Microsoft Research New England, talking with a few brilliant mathematicians and computer scientists. Twitter had just started including ads in their feed, and there was much grumbling and surprise. I responded that Twitter only had a few choices–fewer, given that they were giving away their service for “free.” A quick look at media history shows basically three business models have existed for media institutions: direct sales (eg, you buy a book), patronage (rich people hire painters, or states sponsor broadcasters), or by selling the audience to a third party. Many media industries combined these: buy a magazine, and it had ads. Some cable networks also had ads. In the Twitter case, since they had already been giving their “product” to users (let’s face it, the users were making the product for them), they didn’t feel they could start charging. They were already running on one business model, patronage (venture capital in their case, but patronage all the same) and that was running out. So short of another patron, it had to be ads unless they invented a new way of making money off media. One of the people there said something to the effect of “wow, I never knew it was that limited–I wish someone had told me.” I said “that’s why it’s good to have a media historian around.”

We see this pattern over and over: venture capital in the form of patronage makes an internet service or platform attractive to users in a “too good to be true” fashion. Later, advertising or some other marketing scheme is brought in to make money, and the platform or service is worse for it. A great case study for academics would be what happened to academia.edu when they ran out of runway.

In my intro media studies course back in the early 2000s I’d bring in the fall or spring Vogue fashion issue, topping out over 700 pages, and have the students compare how much it costs them vs the science textbooks they carried around (I never use textbooks for my courses). Then I asked them in what way they did and did not trust each publication, and why (and what it would mean to have ads in textbooks).

Visual capitalist recently released an infographic on how the “tech giants make their billions.” Facebook and Google bring in most of their revenue from advertising: Facebook at 98.5% and Alphabet at 70.4%. But advertising also lurks behind Amazon’s profits, since the site advertises object to you all the time.

One of the promises we were sold in the 1990s and 2000s was that the internet was fundamentally different from other media, and including its business model. But a passing familiarity with media history shows why this never made much sense.

The internet was supposed to be different. The fact that it’s not should give us pause. All media that have ads in them–newspapers, broadcast, magazines, and on and on, are subject to considerably more regulation than Facebook, Amazon, and Alphabet/Google. Maybe it’s time we treat them like the media businesses they are.