Taking it on the road

Things are relatively stable here in Lenvimaville. After being “grounded” in Montreal from February through May, I finally got back on the road at the end of the month. First, I flew to Aarhus for a seminar at the Center for Sound Studies (BECAUSE OF COURSE THEY HAVE A CENTER FOR SOUND STUDIES) and then a conference on Music and Artificial Intelligence at the Aarhus Institute for Advanced Study. Then I came to Berlin, where I participated in a workshop on the history of compression, and then another one on African Phonography (hot tip to American scholars who reside in the United States: apply for a 4-month fellowship in spring, summer or fall at the American Academy of Berlin).

Under the best of circumstances this is an exhausting itinerary: fly across the Atlantic, then spend a week doing all day events, then get on a train, then do it again for 10 days, which a couple breaks. I am happy to report that whatever tiredness I have felt does not seem different from how I would feel if I weren’t on Lenvima. One of the big concerns with the drug is endurance and fatigue, and I seem to be passing this endurance test, though it’s all true that my overall stress level is very low because I’m on leave. In any event, I gave myself the option to bail on any event at any time, and have been good about doing what I feel like.

I’m holding steady at 18mg. I notice my hands a lot but am not in ambient pain without Gabapentin–there is just tingling from time to time, plus the ongoing hypersensitivity. And I’m remembering more nouns now. My blood pressure is slowly dropping back towards normal, if not quite there. I’ve got some stiffness in my joints that I’m going to need to do something about–it could be caused by Lenvima and it could be caused by the blood pressure meds. Ibuprofen helps but I can’t be on that forever. My nausea seems to be down to once a day or even a little less, though my digestion is still slllllooooowwwww compared to what it used to be.

There is slightly nasty stuff in this paragraph: Flying was hard on my hands. After a transatlantic flight and then a shorter flight in Europe, it felt like there were chemical burns on the sides of my fingers despite frequent and liberal application of Eucerin. It must be the dryness. Anyway, that went away in a few days. My hands are still sensitive–I find opening a sealed bottle of fizzy water somewhat painful–but that seems to be the new normal. But then…I started getting the foot part of hand and foot syndrome. As best I can understand, you get something like blisters under the skin. This makes every step painful, sort of a combination of walking on a giant blister and walking on a giant patch of raw skin. One intrepid member of my social media support group suggested that I try blister bandages. The German ones are surprisingly good, and today was my first real pain-free walking day since the 27th of May. Maybe they’ll come back, maybe they won’t, but I am stocking up on the German bandages just in case (the Quebec ones are a bit…flimsier).

One of the weirdest things about this trip was hauling around a two-month supply of Lenvima, which is more valuable than my computer, not that anyone looking to steal stuff would know that. Still it’s strange to be hauling around some kind of weird booty in my carryon, worth an inordinate amount of money.

7 is a lucky number/WTF is thyroglobulin and why is it a tumour marker/didn’t want to be “that guy” at the Broken Social Scene Show

Good news!  My tumour marker keep dropping.  It is down to 7.  That’s pretty amazing given where I started out.  It’s not the absolute numbers that matter, but the relative numbers that do.  If the numbers doubled in a short period, my doctors would be worried.  So that I’m down from 45 is a very good sign in the opposite direction.  I haven’t said much about the nature of the tumour marker, but it’s very easy to understand.  The marker is called thyroglobulin.  It is a substance in the blood that is made by thyroid cells.  If I don’t have a thyroid, which I no longer do, then the only thing that could be producing thyroglobulin is the metastatic thyroid cancer cells in my lungs.

More news: 18mg doesn’t seem that different from 20mg.  Maybe I’m a bit less nauseous.  I’m on 3 different meds that make me light headed.  For instance: 2 hours and 45 minutes into the Broken Social Scene/Besnard Lakes show on Tuesday night I had to make a decision.  I could either keep standing up and risk falling over and fainting from the stuffy air (which was also nauseating), or I could go in back and sit down against the wall.  I knew that was a possibility going in, but it has been proven to me as a going concern.  I did not want to be the guy that passed out or fell over at the penultimate Broken Social Scene show in Montreal.  I also want to still be able to go to a rock show now and then.
ALSO: the Besnard Lakes keyboardist played electric autoharp on one song.  Rock and roll!

I’m going to try quitting Gabapentin.  My dose is pretty low, so it’s entirely possible I will have no withdrawal side effects, but even if I do, I’m hopeful that this will mean less frequent blurred vision (mild enough not to be a danger but powerful enough to be annoying for reading from time to time) and fewer forgotten nouns.  If the pain in my hands comes back (we won’t know for about a week), then I can try Lyrica and see if the side effects are any better.  

My hands are holding steady, but I’m starting to have issues with my feet.  I’m wearing softer socks, and applying various ointments.  Also, foot pain is annoying but not distracting like hand pain.  See: the sensory homunculus.

My blood pressure is still not great, so I’m going on another med to see if we can get it down to where it’s supposed to be.

In other news, I made a slap bass playlist for my oncologist, and there are angry people in my cancer group.  

How to delete Adobe Acrobat MS Word Add-in for Mac desktop apps

Just because I lost two hours to this yesterday and it’s hard to find this information online* hopefully this will pop up in the search engines.

Search in finder for the file linkCreation.dotm and then delete it. Reopen MS Word and the problem should be gone.

This works on MacOS Mojave; I haven’t tested elsewhere.

Why would you need this solution? Here’s why I needed it. I installed a desktop version of Adobe Acrobat, which I had purchased before they went to their execrable subscription model. It added some code to MS Word (also desktop) that froze the application every time I opened a new document. NOT helpful. I deleted Acrobat using their Acrobat deleter app. The garbage code was still freezing Word. I found it listed in Word’s macros but was unable to delete it using the “minus” button in the macros list. Why? Who knows?

Since Preview does most things I need with pdfs, I just needed Acrobat for redaction. There are two options I have found outside Acrobat: 1) PDF Expert and 2) In Preview: add a black box over the text you want to redact, export as tiff image, reimport as pdf. That will destroy all the OCR but also make the redaction “stick.”

*It was buried in a thread on the Adobe support forums where the wrong answer was marked as the right answer.

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.