Or more accurately, I am losing my taste. I probably do have a flavour.
This particular side effect of RAI can set in a few days after treatment, and in this case it did. I noticed it this morning at breakfast. It’s sort of like having a badly burned tongue–everything is muted, some flavours more than others. Last time this happened I couldn’t taste sour at all. This time I sort of can, but I’m trying to figure out what has taste and what doesn’t. At least I still have smell….
All things considered, radioactive iodine treatment is “getting off easy.” It lacks the existential fatigue and sunburn from within that sets in with external beam radiation. It lacks the utterly disjunctive transformation and bizarro pain from unexpected places that comes with surgery, and it lacks the body-falling-apart poison experience of chemo (I’ve only heard about the last one; the other two I can speak to more directly). But it was still shitty in its own unique way. People complain about the low iodine diet, but that was mostly a challenge. The lithium and RAI together, though, gave me a little window into why sometimes you hear about people not taking their meds. Once the lithium built up, I felt like I had a head filled with sand, dry mouth and eyes, and once I took the RAI pill, I was tired all the time. I woke up Monday morning worried that the condition would last indefinitely. Happily, it hasn’t. I’m returning to life but it’s a slow process. I would say I’m still around 80% or so in terms of energy. I can think clearly, though, which is a welcome relief.
This morning I had the blood test and scan that follows after radioactive iodine. I wish I could say it was a big relief, since it marks the final stage of the treatment process. But honestly, it felt a little ominous. So now I just have to wait to hear from my doctor.
So much for food blogging. I was spending too much time cooking. And for the last week I have felt pretty crappy. Today was my first “good day” in just about a week.
Tomorrow I expect to be released from the low iodine diet after my 8:30am scan. It hasn’t been that bad this time. I really miss milk in my morning tea, and yogurt with breakfast. I really crave a pizza. But that’s about it. Oh, I did have a stray thought about eclairs the other day.
The cost, of course, was spending tons of time in the kitchen, and eating a fairly repetitive diet. It turns out Mexican and Indian work really well for vegetarian low iodine. I’d say my legume intake went WAY up over the last 3 weeks, which I could probably stand to stick with.
The first thing is that everything from week one got us to week 1.5. After that, we did a few other things that were quite good. And a big portion of last week I was by myself.
Ubuntu’s Bean soup — which goes very well with salad and fresh bread, and/or roasted vegetables. This is without question the best soup we have ever made, or tasted. I would like to tell you that the co-op’s great northern or navy beans are just as good as the super expensive mail order rancho gordo yellow eye heirloom beans. But it turns out those are pretty delicious. Nevertheless, with great northern beans it’s still the best soup we’ve ever had.
I made a pasta that lasted 3 or 4 meals:
1 onion
several nance carrots (the super sweet ones)
24 oz mix of button and cremini mushrooms
plenty of crushed garlic
salt, pepper, thyme and oregano to taste, plus some crushed red pepper for kick
big handful of dried porcini, soaked in boiled water for 30 minutes, then strained (reserve the liquid, rinse off the porcinis, chop them)
Sautée carrots and onions till soft, add fresh shrooms and garlic until they give up their juice, add in soaked porcinis and reserved liquid and cook the liquid down until it’s a thick sauce. Meanwhile, boil a pound of whole wheat pasta. Toss everything together, serve. Truffle oil is a nice topping if you can’t put a little parm on.
“Cuban” black beans and rice (from New Recipes from the Moosewood) NOTE: although this is a delicious recipe, I am very skeptical of their “Cuban” origin. I prefer to use orange juice rather than tomato juice, and instead of plain brown rice, we make a Mexican red rice recipe from The Border Cookbook (naturally, with veggie stock rather than meat stock–actually, The Border Cookbook is an amazing vegetarian cookbook despite the fact that most of the recipes require meat).
Tonight I made tacos with the leftover beans and some sautéed veggies. I topped them with a red onion I’d sliced thin, and cooked in half a cup of cider vinegar and half a tablespoon of sugar (then I added more sugar).
For breakfasts, it’s been grits, or quick breads. Especially: a couple rounds of whole grain banana bread, modified from this recipe: 1/4 cup coconut oil instead of butter (I think that may improve it), no nuts, no chocolate chips, and egg whites only, oh, and 2T wheat germ. It’s definitely heavier than your regular banana bread, but I really like it. The corn muffins from the Low Iodine Cookbook have also been good, though I got a bit tired of them. And now I’m enjoying some banana and blueberry oat bran muffins.
There were a lot of lunches of toast with peanut butter and fruit (or jam), and snacks of carrots and hummus.
That’s about it. I will NOT miss rice milk in my tea. Most of the rest of this stuff, I would eat for pleasure anyway. So it’s worked out okay.
I’m happy to announce a new special section of the International Journal of Communication, co-edited by Dylan Mulvin and me. The section was Dylan’s idea — part pun, part taking a metaphor seriously. Read it here.
The International Journal of Communication Publishes a new Special Section
on Temperature and Media Studies
The 21st century will be the century of temperature. As global temperatures
rise, polar ice melts, and drought becomes a permanent way of life,
temperature has become the single greatest challenge to human life on the
planet.
Temperature is also a media problem in many ways: from the heat generated by
new media–whether in our hands or in giant server farms; to the
technologies used to measure, represent, and understand temperature; to the
contribution of new media systems themselves to the problem of global
warming. But this is not a new phenomenon. For centuries, media and
mediation have been at the center of experiments in and beliefs about
temperature and its relation to culture, gender, language, and life. In
this special section, we take the 50th anniversary of Marshall McLuhan’s
Understanding Media literally to ask “What are hot and cold media?”
“Media, Hot and Cold” (guest-edited by Jonathan Sterne and Dylan Mulvin)
is a special section of the IJoC, that tackles questions of temperature in
media studies. Just as the intersection of media and temperature is hundreds
of years old, this special section shows that work on this intersection is
already happening. “Media, Hot and Cold” brings these existing research
threads together as a contribution to what promises–and needs–to be a
growing area of study.
Contributors
– Alice Christensen, Princeton University, USA
– Wolfgang Ernst, Humboldt University, Germany
– Brenton J. Malin, University of Pittsburgh, USA
– Jessica Mudry, Ryerson University, USA
– Dylan Mulvin, McGill University, Canada
– Lisa Parks, University of California Santa Barbara, USA
– Rafico Ruiz, McGill University, Canada
– Nicole Starosielski, New York University, USA
– Jonathan Sterne, McGill University, Canada
– Marita Sturken, New York University, USA
Read this special section that published October 30, 2014 at
http://ijoc.org.
Larry Gross
Editor
Arlene Luck
Managing Editor
_______________
We are now in the home stretch. Another long night of sleep (thank you daylight savings). This morning I took my final lithium (good riddance). Carrie and the kittens come home this afternoon, though nobody gets a hug yet. I want to put up a “welcome home, girls!” banner. But first, I have a lot of laundry to do — all of the bedding, and everything I wore, and I also need to clean the bathroom very thoroughly.
This morning’s Geiger counter reading is 27.4 µSv/hr, so we’re moving in the right direction. It definitely varies around my body. And you have to be pretty close to me to get any radiation at all. I made a recording for you. The Geiger counter is no longer screaming so you get a clearer sense of how much radioactivity there is depending on my position.
So there you have it.
In other news, when Carrie stopped by Friday night, she picked up our older, bigger cat carrier because they no longer fit in the small one. In some kind of poetic convergence, the RAI stickers for our last two cats (one and two) are still on the carrier. There was a time when Carrie was the only being in the house with a working thyroid. Now we’ve got 3 working thyroids again. And so turns the circle of life….
So we’re getting close to 48 hours of radioactivity here at chez Berri.Yesterday I was up and down and today feels more of the same. I’m pretty tired (though I may in fact, just be tired) and so have slept a fair amount. I get headaches from time to time. My mouth and eyes are dry. So far, everything tastes pretty normal. I think.
But of course, the real question is what it’s like to be radioactive? Since I don’t have access to that particular part of my being through my own senses, I turn to my delegate, the Geiger counter, which is getting more interesting as I get slightly less radioactive. But how radioactive am I and what does that mean?
I’m using the “microsieverts/hour” measurement because that’s what the Jewish General used on me. It’s a measurement of exposure if you’re close to me. If you want some comparable dosages, here’s Wikipedia:
.098 µSv = a banana
.25 µSv = airport screening
1mSv (100µSv) = US recommended dose limit per annum
1.7mSv (170 µSv) = estimated annual dose received by flight attendants
10 to 30 mSv = whole body CT scan
50 mSv = US annual occupational dose limit
60 mSv = estimated dose to Fukishima evacuees
Yesterday, I came in at 137 µSv/hr and change around 2pm, and 120 by midnight. A few minutes ago, I was down to 84 and change.These are measurements in close proximity. 3 feet away, the numbers drop significantly. Just now, when I ran the Geiger counter, I moved it all around my body. Levels were highest around my chest (where the metastatic thyroid cancer is) and my neck (ye olde thyroid bed). My arms, legs, and the top of head were much lower.
So if I understand these measurements right (and I may not), last night, if you cuddled up with me while we slept, you would have awakened having received a dose of radiation higher than a Fukushima evacuee. Carrie came by for dinner but was generally 3 feet away from me or further, so her exposure was considerably lower. When she arrived, I think she was a little skeptical but after seeing my Geiger counter demo, she was more than happy to sit across the table from me and on the next couch over as we caught up on the week’s episodes of Scandal and How to Get Away With Murder.
Another way to “know” my radioactivity is to do something with the real-time response of my Geiger counter. So I’ve been recording my Geiger counter output once a day. It produces a series of ticks. Those ticks can be turned into sonic events in a number of ways. Below is a recording. On the left channel, you’ll hear the ticks of the Geiger counter (this is different from the beeper you heard yesterday). On the right channel, I have transformed them into percussion instructions (MIDI data, kids) and applied them to a set of sampled gongs. It’s not an exact science, but you can get some pretty subtle gong playing.The last hit is a cheat–it’s the pop when I turn off the Geiger counter’s output and therefore not a sign of anything:
I also ran the sounds into my modular synthesizer. If you’re not a sound nerd, just play the file below. Otherwise, keep reading: last night I sent the recording through an envelope follower and out to my modular synth. The follower interpreted the sounds as pitches and gate triggers. I then ran the pitches through a quantizer with 3 outputs–one to a modulated wavetable, one to an analog synth, and one to the pitch shift of a digital delay, and the gates to some VCAs. Here is a tiny clip of what I got:
So yes, there’s some kind of art project in this. Perhaps a couple more cancerscapes.
The tech had just invited a resident to watch me taking my dose of radioactive iodine. I remarked that I was eager to photograph the pill. That wasn’t allowed–once the pill was out, it was going into me. No fun and games.
We walked into a small room with a list of regulations on the door. We went over the protocols for my being radioactive. I asked lots of questions–about dos and don’ts in my domestic space (more on that in a moment). Then out came the pill. Sort of. First there was giant lead locker. Inside the lead locker was a lead cylinder that was about half the height of a pint glass. I didn’t take any pictures (no fun and games) but imagine a canister sort of like this but orange and with a flat top:
(photo courtesy The Annoyed Thyroid)
Then the tech and the resident left the room. She peeked in through a window and told me to open the canister. Inside was a little plastic pill jar like you’d get at the pharmacy, and inside the canister was a capsule that had been filled with my exact dose. The capsule wasn’t particularly large. I was to open the lid and dump the pill directly into my mouth without touching it with my hands. Except she wasn’t quite fast enough, so I took it out, then put it back in, then dumped it into my mouth. After that, I had to leave the premises immediately.
Standing outside, waiting for my friend Rob to pick me up to give me a ride home, I positioned myself about six feet away from anyone else, in a spot where nobody would be inclined to stand next to me. He showed up 5 minutes later, and home I went for three days of (sort of) isolation.
—
This experience of radioactive iodine is totally different than my last one. For one thing, I’m not locked away in the hospital; for another, the protocols are much more lax. Last time, I was under the impression that I had to worry about electronics — so much so that I rigged up an elaborate arrangement with my iPhone inside a latex glove and an extra keyboard and mouse so I wouldn’t touch my laptop for three days. My clothes were put in the basement for 3 months after my time in the hospital.
This time, they said I should do laundry before Carrie comes home. In fact, if we had two toilets, Carrie could be home right now (except that I timed my dose so that it would coincide with her trip to Michigan for a panel on gender studies institutes). I have to have my own toilet until Sunday afternoon.
For the next 2.5 days, Carrie can spend up to two hours within a meter of me, and the rest of the time we could sit across the room from one another.
As for electronics, they said not to worry about them.
My radioactivity apparently spreads two ways.
1. One, it emanates from me, like exposure to the sun. In the file below, I turned on my Geiger counter, hit record on the phone, put the phone down and started walking away from the Geiger counter. At first you get a steady stream of beeping, because the rates are so high it can’t separate them. As I walk toward the other end of the next room (about 25 feet away) the rate goes down.
I am like a theremin in reverse.
A theremin emits an electromagnetic field which the body interrupts and manipulates to make sound. I am giving off a radioactive field that the Geiger counter interrupts to make sound.
Yes, I am planning to make some audio on this basis.
2. Radioactivity also comes out of me in liquid form. I sweat it, I excrete it, and so forth. Hence the toilet issue. The other big thing besides the toilet issue is not throwing up. At the first hint of nausea, I’m to take gravel so I don’t throw up. Luckily, I haven’t felt really nauseous.
—
As for how I feel? A bit tired, but otherwise ok. I have had a couple waves of light headedness, but other than that I’m just lolling around the house. I have dry mouth and eyes something fierce but that’s been going on since I started taking lithium earlier in the week (3 days before the dose and 3 days after to stimulate uptake of the radioactive iodine in my lungs). No of the more bizarre side effects have manifested yet (like loss of taste, though that can come later).
The weird thing about the experience is precisely that I can’t feel it. I need the Geiger counter to tell me something is different about my body. Which is no different from the CT scans that diagnosed my condition in the first place. It’s a complete alienation from my own senses. Phenomenally, it is an experience of submission, and an experience of the limits of my own faculties. A lot of recent scholarship on perception has tried to develop accounts of perception beyond consciousness in one way or another. But this is a completely different feeling. I am left to experience myself not experiencing my own chronic condition, and my own radioactivity.
