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

Feels GREAT

  • 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.

Today was an unusually good day

10 days on the drug and my tumor marker (thyroglobulin level in the blood) is already down. Today was my “hobby” day at Jewish General — 5 hours in total for a variety of tests and waiting to see the oncologist. It was a short meeting but he seemed unusually pleased at the effects of the drug.

I’m increasing my dosage tonight and go back in two weeks. He warned me that at some point the side effects would hit, so we’ll see. . . .

Other good stuff happened too, but that’s the big news for now.


An allegory about this website getting hacked on Friday night

I grew up in a house in a first ring suburb of Minneapolis. The plot of land was clearly designed by an architect who was not from the area: an unpaved driveway went down a hill to a detached garage. In the winter, the driveway was slippery and it was easy for cars to get stuck, and it took a long time to snowblow–shoveling would have been a nightmare.

In the summers, there was the hedge. Planted in a slight depression along the property line with our neighbours (aka, a ditch), the hedge ran the length of the driveway. It was not particularly beautiful, but when left untrimmed, it started to grow wildly. When I was old enough to do lawn work, it fell to me to trim the hedge. As a kid I was never much for any chores, but the hedge occupied a special place of abjection in my young mind. It symbolized the pointlessness of suburban plots of property and all its extra upkeep: it basically existed to cause problems. Nobody appreciated it much except when it got out of control, when they sent me outside to trim it. And that chore was never satisfying to do. At least mowing the lawn resulted in interesting patterns and you could see your progress. It’s also possible I just wasn’t good at trimming the hedge.

All I can tell you is when I read The Myth of Sisyphus in 12th grade humanities, I thought of the hedge.

Years later, Carrie and I moved into a house of our own in Pittsburgh–on a considerably smaller plot of land. One day our slightly cranky neighbour Ellen stood out front her house, surveyed ours, and said to Carrie, “your bushes are out of control.”

We now live in an apartment.

Drugs update

So far so good. I’ve taken it 3 times. 4pm is a terrible time to have to take a pill, so I’m moving it to bedtime.

My rumbly stomach was much better yesterday evening. I crunched a couple antacids before bed and the only thing that woke me up during the night was a pummelling cat.

Only other side effect: my radiated patch of skin from the external beam radiation in 2010 is hella itchy. Trying a new lotion today.