Well, that didn’t work out as hoped

So the radioactive iodine didn’t work.  Of course “didn’t work” is a bit of an abstract concept. You will recall that the possible outcomes ranged from complete annihilation of the metastatic thyroid cancer cells in my lungs to, well, nothing. It definitely didn’t get rid of the cells.  If it slowed or stopped the growth, we wouldn’t know yet. Unless they have a way to tell.

I am not sure how I feel about it. I went in knowing that there were a range of possible outcomes, the risks seemed more than worthwhile and frankly I was just so relieved they were finally going to try it that it didn’t occur to me to place huge expectations on its success. I am of course not happy, and if I am honest, at this point I have some rather inchoate anger at the cancer itself–nobody wants to be a patient and live the bureaucratic and emotional existence that comes with it. (Though it is better than the alternative.) But mostly I feel like it’s on to the next thing.

The next thing is a consult with a medical oncologist. You don’t do regular chemo for metastatic thyroid cancer in the lungs, but they sometimes do something the doctors call “soft chemo” which is basically pills you take forever. I don’t know if it’s time for that yet or not, but I’ll at least get an opinion on Thursday, which is my appointment. Yes, Americans, that’s American thanksgiving (Canadian thanksgiving is in October).  That’s okay.  This year, like every year, I’m thankful for socialized medicine.

I have tried to not read up too much on tyrosine-kinase inhibitors, which is the kind of drug they’d likely use, before I know for a fact that that’s the way it will go.

But I did decide to get back in touch with the advanced thyroid cancer community, which I had left behind in 2011 after my treatment stopped.  This was an American group–Canada is simply too small a country for me to find people online whose experience is similar to mine.  What I need right now are other people with lung mets so I can compare my experience to theirs, especially if they have had some kind of interaction with pharmaceutical oncology. I have lots of questions about the drugs, and also whether treatment is warranted right now in my case.

As it turns out, that was no easy trick.  First I tried to rejoin the advanced thyroid cancer listserv that was run off Yahoo’s site. Their interface is a mess, and I couldn’t make it work.  There was no tech support, and no way to talk to a human. I think contacted the US thyroid cancer survivors’ group, which runs it.  The director of ThyCa wrote back (impressive!) suggesting I go to Facebook or the execrably-named inspire.com, because the listserv was mostly abandoned. Which is probably better since Yahoo’s listserv interface is a joke and visiting the groups page I see that several groups I once visited are now filled with porn spam. Oh, well. Fuck Yahoo.

So I joined inspire.com. I am not inspired (it seems more appropriate to say “I AM NOT FUCKING INSPIRED” but that’s perhaps a bit melodramatic). It appears to be a kind of generic social network for people with various kinds of conditions to exchange information, blog, etc. But what happens when a single company tries to conglomerate all illness-based virtual communities under one roof? I don’t know yet, but I will say it’s definitely got a little of the “Smile or Die” vibe, and I was not surprised to find, when I went to set my email preferences, that the default was checked for me to “receive messages of potential interest from our commercial partners.” And I can’t just bail. So far, it looks like it might be the only place with a high enough population concentration to actually have other people with lung mets.

Yes, I have been broadcasting my cancer experience to the world from this blog, but that’s for free. I am really not cool with someone else repackaging and selling it to advertisers, who can sell it back to me. I am reminded of Lochlann Jain’s rumination on cancer and the American dream:

A culture that has relished such dazzling success in every conceivable arena has twisted one of its staunchest failures into an economic triumph. The intractable foil to American achievement, cancer hands us, on a silver platter and ready for dissection, our sacrifice to the American dream.

For all I know there is a large body of scholarship on the commercial capture of online patient communities, but if not, well, I’m about to become a participant, if not a participant observer.

Tuesday Dinner / Today Lunch Report

Tastebuds are mostly back!

Tuesday night I arrived home tired, and didn’t feel like cooking. t took out some left over tabbouleh from the weekend. I ate it and thought “wow, this tastes good.”  When I realized that 3-day old tabbouleh doesn’t usually taste better than newer tabbouleh, I went over to the butter dish, rubbed my finger on a little butter and tasted it.  Wow!  Butter!  Then I tasted some salt.  Wow!  Too salty!  So my taste appears to be mostly back.  I’m still not sure I’d season food for other people but soon I’ll get up the courage to try.

Today I ate a corporate burrito for lunch, which was surprisingly good, though it still has a certain number of errors that can only be called Canadian.  For instance, it was grilled. The company may advertise “mission style burritos” but I have never had a burrito grilled for me in the actual Mission.  At least the salsa wasn’t sweet (also a common problem in Quebec).

The other problem with the burrito is that I bought it from a big corporation that has a deal with McGill, instead of from an awesome student group like I usually do, because the administration has put a stop to students selling burritos in the building next to mine.

I Haz No Flavor

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….

A typology of shitness

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.

Vegetarian Low Iodine Diet: Weeks 2 and 3

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.

New Text (a lot of it): Temperature and Media Studies

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
_______________