Cancer Blog!

Once again, I’m back. I have what has turned out to be an unusual case of thyroid cancer and I think I’m going to blog about it.

Summer’s hiatus was a plain, vanilla blog hiatus. My disappearance in October was directly tied to the discovery of the illness, the extra “part time job” that ensued as I went from test to test, and the fact that I was not fully public about the illness until such time as I was able to tell my undergraduate class shortly before my first surgery. Hence the silence here.

For some people, illness is an intensely private and personal matter. I have chosen the other route: being “out” about it in all the ways that a queer or trans person might be “out” about his and/or her sexuality. I’m not sure if it’s been a transformative experience for me (time will tell) but it certainly has been moving. The blogging will no doubt be a very public part of the coping or coming out process, but that’s what a blog is for, no?

As a bonus, this might be the only blog in your rss feed running over the Christmas holiday. We’ll see how that goes. I’m all about keeping you entertained.

In case this is the first you’ve heard and you are worried, it does not look like I’m going to die from this, though cancer does have a way of returning years down the road. I do have a few crappy months ahead of me, though, in terms of treatment. I’ve had one surgery and will have another in January or February. I will have radioactive iodine treatment and I will also probably have external beam radiation therapy, as my thyroid cancer has turned out to be especially aggressive. My voice is totally messed up and I am more or less unintelligible on the phone. I sleep a lot and take a nap every afternoon. The fog left over from the opiates and general anesthesia (from my first surgery) appears to be lifting. Those are the headlines.

If you don’t want to read about my own personal cancer stuff, then just look for other posts, when they come (and they will, eventually).

A few ground rules:

–> This is experimental and I’m hoping to take “cancer discourse” in another direction than the one it usually goes. I notice that Steven Rubio has had issues blogging about his kidney stones, and I am painfully aware of all the bizarre medical discourse circulating on the internet. I have strong opinions on how to deal with illness and I’m going to make them known, but as a hint: I am not looking for alternative cures, esoteric studies or explanations for the cause of my illness.

–>I am also not looking to turn this space into a support group for ThyCa survivors (yes, it has its own internet jargon). There are several really good support groups online, and I’ve learned a lot from reading and asking questions, but while some people really need the support group discourse, I have been blessed with very supportive friends and family in great quantity. I do enjoy talking with other cancer patients who share my dark sense of humor and particular worldview, so if you do, I’ll look forward to hearing from you. Otherwise, I recommend that you seek out one of the big survivor groups in your country.

–>I am on short term disability leave from work. The fact that I am blogging does not mean that I can go back to my job full time or do that “just one thing” you need done. Part of being an academic is being personally responsible for a lot of stuff, but part of being a person is occasionally turning inward to tend your own garden. If I did all those “just one things” I’d be working full time again and not necessarily doing the things that absolutely need to be done. In the winter term, I will be phasing in and out of my job as I am able to, with a clear sense of what I can and can’t do. If I can help you on your timeframe, I will. But if I can’t, I’ll need your understanding.

Establishing the Facts of the Situation

Thanks for the good wishes in the last post!

Before I get into my crazy man blogosphere rantings (okay, that might be a little bit of an overstatement), I suppose it would be appropriate to establish the facts of the situation.

First of all, they call thyroid cancer “the good cancer” because almost nobody dies from it if it is treated. At least papillary thyroid cancer, which is what I have. The usual treatment is surgery to remove the thyroid, and a course of radioactive iodine. The doctors then spend some time experimenting with getting your right calcium and thyroid hormone levels (with pills, of course) and eventually you reach the “new normal” (they can get it right quickly or it can take many months to get the thyroid hormone right). It’s not fun, but it certainly beats chemo or worse, death. One imagines other cancer patients looking at us and laughing. What, no chemo? What, no 60% chance of death? How can you call that cancer?

At the same time, this whole “good cancer” thing has a certain ironic tone to it. Unless we’re talking about astrology, there is no such thing as a good cancer. The word has a certain punch-you-in-the-gutness whether or not it comes with a death sentence. As with any kind of bad news, there’s not just my own emotional reaction, but others’ reactions to consider.

As my case got more complicated, I started feeling less and less okay about the good cancer schtick. But I’m getting ahead of the story.

I started out as a more or less regular case. In the spring of 2009 I started experiencing a set of weird, disassociated symptoms that were hard to figure out (though a local friend reminds me of health complaints I’d made in Fall of 2008 — I’d forgotten about those but it’s possible that I had symptoms even earlier). There were lots of tests and a good deal of waiting. I was diagnosed with asthma and given drugs (which helped some), cleared of any heart conditions (well, that’s good news!), and subjected to even more tests.

By fall 2009 they were zeroing in on the thyroid. I’d had a large goiter for some time but it had appeared to be benign, other than compressing my trachea and thereby aggravating the asthma symptoms. A biopsy done in September came out positive for papillary thyroid cancer.

The surgery was maybe 5 weeks after the diagnosis, and the plan was to remove the whole thyroid, take the rest of 2009 off to recover, and then be back in effect for winter term 2010. Oh, how I love a good plan. The tumor was nothing like what they expected. Your usual papillary tumor is soft and about 1cm in diameter, give or take. Mine was hard as a rock, jagged and sharp, and 7.5cm in diameter. It was working its way around my trachea and esophagus and was essentially slowly strangling me (which explains a whole lot about my mysterious symptoms). When the tumor came out, we weren’t even sure what it was. It could have been anaplastic thyroid cancer (the extremely deadly kind) or Reilly’s thyroiditis (benign but damaging because it takes up space). The biopsy came back as advanced papillary cancer. Apparently it had been in me for quite awhile–long enough to become unusually aggressive. Anyway, I walked out of the appointment to go over the biopsy results basically feeling like I had cheated death.

To add injury to insult, they couldn’t find my right vocal nerve. There was no evidence that it was broken, but there was no evidence that it was there. And even as I write today, there as yet is no evidence of it working. So they had to stop after taking out half the thyroid. If you lose both your vocal nerves, that means a tracheostomy and possibly total loss of the voice. With only one working vocal nerve, my left side has to compensate, and my voice is a shadow of its former self. When I first got out of the hospital the sound of my voice was somewhere inbetween Tom Waits and Marge Simpson’s sister (I’m not such which one). I can’t talk on the phone, and for awhile had to swallow to the right to close off my trachea. More on that in a subsequent post but so far this is my only major complication (not that there won’t be more, just that there aren’t any now). Of course it’s a total drag, but my voice changes every week or two so we don’t know what the final result will be like. I’ve got a speech therapist and will eventually see a laryngologist.

So as I write today, I am in recovery from the first surgery. AS I still have half a thyroid, my calcium and thyroid hormone levels are normal, and so I haven’t had to go through that particular hell yet. I’m going to have the second surgery sometime in January. This is now a “high risk” surgery (to my voice, not to my life). They will hook up all sorts of electrode to my left vocal nerve and apparently buzzers will go off every time they get close to it. I imagine a game of Operation:

Following that, I will still do the radioactive iodine pill, and there will be a period of a month to six weeks where I go to the hospital every day for an hour and they a beam of shoot radiation at me:

Of course there are risks and possible side effect with everything. As they’ve done scans for this cancer, they’ve also found some other mysterious stuff which of course leads to more tests. The ontological condition of cancer is uncertainty.

I’ve had lots of great support from people. My mom came up for the surgery (which was good for Carrie as well), and she will return in January. I’ve had a nonstop parade of friends visiting, which has been very good for me, since I haven’t gotten out that much. I’m starting to do a little more. I’m lucid enough to blog, and I’m starting to reply to emails (but good lord, there are so many). I’d entertained fantasies of a vacation in Florida for some sun over winter break, but that’s probably not going to happen. A vacation nearer to home, perhaps. I am still sleeping a lot. Surgery and general anesthesia affect everyone differently and I think I’m still dealing with some aftereffects.

So those are the broad contours of the situation. In the coming weeks, I’ll write more about different parts of it: the diagnosis, being “out”, the surgery, my voice, the condition of uncertainty, the Quebec healthcare system, and lots of other things.

Anyway, I thought a general overview would be good. The point of this is not to leave people hanging in suspense about my prognosis or condition.

On Being “Out”

We live in a world where people are more private about their ailments than their sex lives (the same has been said about money, but that’s a whole other subject). If I had to guess, such privacy stems from stigma, the desire not to be perceived as weak and the death taboo. No matter the cause, almost all protracted illness carries with it a certain stigma in many social quarters, and stigma is something that can be wielded against people at unfortunate times. As I’m fond of pointing out, one of the unfortunate side-effects of broad secularization (overall a great historical achievement) is that people no longer seem able to deal with the fact that they, and everyone they know will one day die. So people stay quiet about their ailments. I was one of them. I kept to myself about my various symptoms before I got my diagnosis, despite the fact that I’d had problems for months.

When I learned I had cancer, I had a decision to make. I could treat the illness as a private matter, telling only my closest friends and family. But that would mean all sorts of unexplained behaviors and absences for months on end. By the nature of my job, I lead a public life. Professors don’t just disappear from large lecture courses in the middle of the term. Department chairs don’t just suddenly abandon their posts in the middle of term, and even casual friends don’t just stop returning phone calls and emails without raising questions. Moreover, creating a divide between those who know and those who do not meant a whole lot of extra work for me in managing my identity and who knew what about me. So I decided to take the plunge. I would just tell everyone. I suppose there’s still and inside and outside as you won’t be seeing photos of my scar here (healing nicely, thanks to my surgeon’s artistry and nightly doses of neosporin) or reading various gory details of various, ahem, post-surgical events (apologies to Gone Feral readers who may have wandered over). But basically, I’m out.

Living as half of a heterosexual couple, I can’t really say what it’s like to be queer and out, but I have read enough and talk with enough people that there must be some parallels in the liberation that one feels. I am, of course, tremendously privileged and lucky to live and work in an incredibly supportive environment. From my time on two survivor listservs, I know that this is not the case for everyone. So there’s probably a class and education element. But it’s been incredibly eye-opening for me. Maybe it’s just me, but I feel like health and the body are still places where ideology does its work most effectively. I get on the metro car in the morning, and apart from someone who is obviously hurting in some way, I assume I am in a car full of healthy bodies who have no interaction with the medical and psychological complex. I go to work and assume the same thing. My problems are my own, theirs are their own. The death taboo does it work: we live as if we are surrounded by undamaged bodies.

But of course this is not the case. Almost everyone has some level of interaction with medicine or psychology, and it’s a fact of bodies that they break down, they do not work as they are supposed to, and they create all sorts of mysteries within themselves.

I opened myself up to a tremendous wave of emotional support from friends and strangers alike, and that’s been great. But something else happened that because of the ideological blinders, I never really expected. I started hearing about other people’s medical issues. A lot. Once I took the first step, there was a conversational space for other people to talk about their issues and tell their stories. It has been tremendously freeing to talk openly about things that are not often openly discussed, not for some kind of thrill of breaking taboos, but for the much more mundane pleasure of connecting with people. I’m not saying people should sit around talking about their illnesses and bodies all day. But they shouldn’t feel like they can’t when the subject is apropos or it’s an issue on their minds.

That is not to say that there isn’t awkwardness. I did not ever envision the day I’d stand in front of 230 undergraduates and declare to them that I have thyroid cancer (complete with CAT scans of cat thyroids for illustration in a powerpoint). Being McGill students, I got a ton of incredibly nice emails, many of which are still owed a response (keeping up with the email and cards has proven impossible though of course I’m grateful for every single note). Today I had to explain to my grad seminar what was wrong with my voice and why I was using a microphone. And why I might disappear for part of the semester.* That’s not the first-day vibe I usually go for.

The same is true with strangers. At least once a day when I’m out or get a phone call, someone asks what is wrong with my voice. So I tell them that I’ve got a paralyzed vocal cord from thyroid cancer. I don’t know who said that coming out is a constant, ongoing process, but again I feel that there is some kind of parallel between what disability studies scholars sometimes call normalism (you can guess what that means) and heterosexism. In both cases, you’re assumed to belong to a dominant category until suddenly, you do not. And when you do not, you must explain yourself.

So I explain myself. I figure it’s good to raise awareness, it’s easier than making something up, and it’s made life with cancer immeasurably more tolerable and simpler.

————-

* Teaching while undergoing treatment sounds insane, but it’s not. That’s for another post. Just trust me. Also, I’m co-teaching the class so if the going gets rough at the wrong time, the students are not hung out to dry.

Disability Studies 101: Saturday Night Practicum

This is a post about some issues I encountered at someone else’s birthday party, which makes it inherently pathetic and self-centered. But then, this is a blog, so I get to be pathetic and self-centered once in awhile, right? I apologize up front. For the record, it was a fun party and any non-fun issues are strictly my own and not the responsibility of my hosts or friends. I was totally glad I went.

So, onto the story.

As I have mentioned here, my voice has not been the same since the surgery. Assuming that there isn’t further damage in the next surgery–if there is a next surgery (or from the cancer itself) I will get back about 70-80% of what I have. I’ve been going to an excellent speech therapist (it’s like singing lessons) and every few weeks there is some improvement.

But for all that, I am functionally disabled in the meantime. I used to have much more vocal power than other people. Now I have considerably less, and what is projected is harder to hear. That said, I am not the kind of person who wants to sit at home and be depressed about a disability or being in the middle of treatment. If I feel good on a given day, I should do something. There’s a Quebec saying that is something to the effect of “you have to live your life.” And so I am trying to figure out how to do that.

Since the surgery, I hadn’t been out to anything more than a dinner party, and even dining out has been kind of fraught because even moderate restaurant noise makes it difficult for my voice to be heard. It is easily masked. Carrie and I dined recently at Bombay Mahal and while she could hardly hear anything I said, I had an entertaining time watching her try to eat the “extra spicy” dosai she’d ordered, so that sort of made up for it. (The waiter said “have you had our food before?” she answered “yes, but I’d still like some extra spice.”)

Anyway, Saturday night was a party celebrating two of my friends turning 40 so I thought it would be a good time to give this whole outside world thing another try. Sooner or later I have to, so if not now, when? The party was held at a bar, starting at 8:30 and then migrating upstairs two hours later for dancing. I figured I can at least dance if I can’t talk, right? And I was clever–or so I thought. This whole being disabled thing means I’ve got to experiment and figure out something that works for me in the big bad normalist world. So I took some index cards and a sharpie, and came up with a series of stock phrases that I could flash at people, such as:

“How, how’s it going?”

“My voice is messed up so I made these cards.”

“Cancer sucks. I feel fine. Thanks for asking.”

“I don’t know yet. I’ll know more Monday or Tuesday.”

“Tell me how YOU’RE doing.”

“Yes, please. Water.”

“Great party!”

“Happy 40th birthday!”

“Tell me more.”

“That’s awesome/I agree/I’m happy for you.” (select whichever one is appropriate)

“That sucks/I disagree/That’s too bad” (select whichever one is appropriate)

“If you could hear me, I would have a clever 1-liner right now.”

and so on. I brought my sharpie and some more blank cards to improvise on the spot.

My hope was that with a little prompting, other people would talk and I would listen, aided by the cards. But two things happened.

First, people were self conscious about asking me stuff. So I tried to talk. Today I was incredibly hoarse as a result. I should know better. They were trying to be nice. And I do like to talk, so the temptation is great.

Second, it turns out I wasn’t the only disabled person at the table. In more than a few cases, each time a card came out, friends had to reach for their reading glasses in order to be able to see them. Foiled! Some disabilities, like farsightedness are “normal” but I obviously didn’t even consider them, since they are not my own. Others, like my voice, are “abnormal” and therefore marked. Though marked disabilities are equally unconsidered by those unaffected–I always hated phone menus that require you to speak; now they do not even recognize my voice as a voice.

As the disability studies motto goes, “someday, you will join us.” That is what is so difficult in thinking about anything like systematic accommodation. Bodies fall apart or are “absent” in different ways, and accommodations may themselves introduce new issues into play.

I still plan to get some kind of portable voice amplifier (or more likely, buying whatever is out there as a template for something more advanced that I help design). But first we have to have some decisions about my course of treatment. I don’t want to drop a few hundred bucks on something I won’t be able to use.

I am happy to report that I can still dance. If by dancing we mean “semi-rhythmic movements on a dance floor.” I was never very good at the whole “particular-body-part-in-a- particular-place-at-particular-time” thing.

——

Postscript: I learned that film critic Roger Ebert is a thyroid cancer survivor, though he’s had a particularly rough go of it. He’s written a few things about it, but they’re pretty sobering, since he no longer eats or speaks with his own voice.

Latest news

Part of chronic illness is managing others’ responses to it. In the sense that lots of people want to know what’s happening and I can’t possibly update everyone individually. So I have resorted to mass emails. Here’s tonight’s.

——–

Dear Friends and Colleagues Near and Far,

I’m writing with another brief cancer update.

Today was a big medical day. In the morning I had a PET scan, which is a whole body scan where they look for cells that take up radioactive material (which was injected into me). On first glance at the scan, the only area that appears to be abnormally lit up (brains, hearts, livers, etc usually light up) is the remaining part of my thyroid. But we need a proper report, which will be another week or two. Late this afternoon, I met with my surgeon and my endocrinologist (who also serves as an oncologist). They both suggested that I hold off on surgery for now while we assess some things. They are also referring me for what is essentially a third opinion. There is also apparently some (very slim) possibility that my right vocal nerve might start working again if it is still there. I’m not holding out for that one but of course it would be nice.

To an observer, the moving surgery dates and all might sound maddening. But given the risks posed by another surgery (especially to my voice), I am 100% in favor of a cautious approach. So for now it’s more appointments, more consultations and possibly more tests. And Synthroid.

As always, my apologies for not writing back to everyone. I’m finding it hard to keep up with email, but I’m hopeful that in the coming weeks I can catch up.

More news here as it happens.

My Radioactive Best,
–Jonathan

Cancer Crawl — 25 January

There’s some bloggable backstory here. For instance, today I saw a videotape of the inside of my throat. My right vocal cord remained paralyzed but the left one moved all the way over to compensate. Also, it turns out that the insides of people’s throats look an awful lot like meat. But here’s the update, and I will write more soon.

———–

Dear Friends Near and Far,

Welcome to another exciting installment of Cancer Update, which I am both the subject of the news and its author.

HEADLINES: surgery is back on again, for the 12th of February. As always, there is a chance that the surgery date will be changed, but if it is changed, it will probably be the 19th of February. So no Mexico vacation for me but if the drugs are good enough, I won’t care. Once we know how the surgery goes, I will be scheduled in for various radioactive treatments. There are some serious-but-not-mortal risks to the surgery but the risks for doing nothing are higher, so I am as certain as I can be about the decision.

You can stop reading here, but as always the gory details are included for the curious (and to spare me the trouble of repeating them in a lot of separate emails). Apologies for droning on.

THE LONG VERSION:

When we last left off, my surgery had been suspended and I’d been referred for a 3rd opinion. Thanks to some help from a doctor friend here, I got in for a “clinic” pretty quickly at Montreal General. It consisted of a senior endocrinologist (who also acts as an oncologist—he trained my endo), a senior surgeon who is very well respected in these parts, and a med student. They went over my case in great detail and discussed my various options. It turns out that the non-surgical option is not really an option. Given the size of my thyroid and the probable size of my tumor, they would have to give me enough radioactive iodine to kill me in order to kill it. Even with the highest tolerable dose, followed by external beam radiation, they would not get rid of it. It would then likely grow back and surgery might be necessary a few years down the road. Except that a later surgery would be much more difficult and dangerous because of all the burnt tissue inside of me. Worse yet, there is no real evidence-based medicine for a non-surgical option in my case, so we would more or less be flailing around in the dark. They were both very clear that they would recommend surgery to me even with the risks, and that they themselves would choose that path if they were in my place.

One other nice outcome besides a clear path forward is that the consulting surgeon volunteered to be present for my surgery, so I will now have two surgeons instead of one. They will also have various gadgets in place to minimize the risks, and the surgery will take place at Montreal General instead of Jewish General. I guess I’m on a tour now; at least I am collecting cards and proliferating dossiers around Montreal hospitals. The surgery will begin with an all-forces effort to locate and protect my left vocal nerve.

That said, there are still serious risks to the surgery. Because I have only one vocal nerve left, if the second one is damaged or wrapped in cancer, I will have to have a tracheostomy. A trach will not be particularly fun, but is certainly a livable disability. The odds I’ve been given are between 1% and 10% of having to have it, but of course I’m a person, not a population so it’ll either be 0% or 100% when I wake up in the recovery room. I guess the inbetween is if they have to do a temporary trach, which could also happen if the nerve is stunned. Last time, there was some risk of the unfortunately-named “Sternal Split”, and there’s still a very small chance of that, but it’s basically more pain in the short term if they need to dig in a bit to protect my nerve. There’s a long menu of other, weirder risks (such as inability to smile on one side of my face or to lift one of my arms above my head) but as I’ve said from the beginning, it’s likely I’ll get one out of a bunch of possible outcomes, and so I will deal with whatever happens when it happens. I told the surgeons to save the nerve if they can, but if they can’t, then I don’t want clean margins in my neck, I want clean highways in there. If they can save the nerve, they may leave in a little bit of thyroid to be taken out with radioactive iodine. I’m fine with that, too. The condition of my voice after the surgery is a big question mark. If they can save the nerve, it is likely that it will at least return to the condition it’s in now. If they can’t, I’ve heard some pretty divergent things about speech with a tracheostomy. The surgeons seem confident, but a laryngologist I met with today was considerably less reassuring (her answers were a lot of “it depends”).

GOOD NEWS DEPARTMENT:

In the meantime, my voice continues to improve in plateaus. Last Monday I woke up and sounded like “me” (at least in my head) for the first time since November. My voice is still much quieter than it used to be, but the quality is so good that when I saw my surgeon last week he scoped me to see if my right vocal nerve had started working again. My right vocal cord is still paralyzed, but my left vocal cord has compensated nicely. On the telephone people almost can’t tell anything’s wrong, though it’s still harder for me to talk on the phone than in person. Also, I saw another surgeon today who’s been tracking my lungs. He went over the PET scan and there are no clear signs of malignancy outside of my thyroid, though we’ll do another PET scan in 4 months to be certain. If the Quebec healthcare system wants to spend the money on me, I’m happy to oblige.

I have been sneaking into work a little bit, but I’ve been unable to do much of my own writing. That part of my brain seems to be preoccupied and/or diverted to anxiety management. At least the musical part of my brain seems totally uninhibited by the goings on elsewhere in my head.

I will write again if there’s a big update or a change of date for the surgery. Otherwise, the next message you get will likely be post-surgery.

Best to you all, and as always, more news as it happens.

Sincerely,
–Jonathan

On Diagnosis (Attitude Part 1)

I get a lot of questions about my attitude toward having cancer. I don’t actually feel as though I am exercising an act of will, or being stoic, or heroic, or brave or anything else. These are clichés, as well illustrated by the Onion article “Loved Ones Recall Local Man’s Cowardly Battle With Cancer”:

“Most people, when they find out they’ve got something terrible like this, dig deep down inside and tap into some tremendous well of courage and strength they never knew they had,” said Judith Kunkel, Russ’ wife of 11 years. “Not Russ. The moment he found out he had cancer, he curled up into a fetal ball and sobbed uncontrollably for three straight weeks.”

That’s the thing, it actually takes more effort to run around screaming “oh shit oh shit oh shit!” than to simply, well, deal with it. (Though I guess I’ve never tried the running around screaming part, so I will have to defer to those who have more experience than I do).

So let’s start with the diagnosis. A cancer diagnosis, even a thyroid cancer diagnosis, is supposed to be devastating. To me, it was a relief.

I don’t know how cancer diagnoses work in other medical systems, but the medical culture here is that one does a test and either schedules a follow-up a few weeks later or gets a “we’ll call you by X date if there’s anything to worry about.” I had a biopsy in September and I had an appointment 3 weeks after the biopsy. Maybe 8 days after the biopsy, I get a phone call asking me to come in at 8:30 the following morning. You don’t need a PhD to figure that one out–they weren’t calling me in urgently to tell me it’s benign. So in a way, the phone call tells you.

Carrie and I spent that night worrying but we couldn’t really do anything, and there is still reasonable doubt since nobody has actually said the words “you have cancer” to me. I imagine that is one of the crappiest parts of the medical profession. I’ve had to dole out my share of bad news as professor and chair but it’s not life-and-death bad news. I remember the appointment only in pieces, and in fact could not tell you how I was told. But I do remember in vivid detail the surgeon going over the risks of surgery and its necessity. That’s where I first learned about the anatomy of my neck–the parathyroids, the thyroid lobes, and the recurrent laryngeal nerves (you’d think I would have come across that one in all that physiology reading for the Audible Past but since they weren’t ear-related, I more or less tuned it out).

In my case, the diagnosis turned out to be a relief, especially in retrospection. I had been feeling like crap for months, with a diffuse set of symptoms that were hard to explain and impossible to attribute to a cause. Some were outright bizarre. For instance, I had become incredibly sensitive to pressure changes. Some old farmers can predict the weather from their knees. I was able to predict the weather from my neck, and pressure changes made me feel pretty sick. Once the right lobe came out and the surgeon looked inside, it was clear that one of my major causes was that the tumor was essentially strangling me. If cancer had not been found and if the surgery would not have been performed, it might have eventually killed me. Though probably my diffuse symptoms would have become more and more acute and I would simply have wound up in a hospital in much more unfavorable conditions. Instead, I can no longer predict the weather. That’s what the internet is for, anyway.

With a thyroid cancer diagnosis, anyway, I went from not knowing what was wrong with me to understanding exactly what was wrong, and what it would take to make it right. Yet, cancer itself is incredibly abstract. In its advanced stages, it is intensely painful. But it is not causing me any physical pain. Nevertheless, I know it has to go.

Oops

Well, I’d planned to blog a whole lot more but the last couple weeks have been surprisingly busy, which is good, since it’s not much fun to contemplate the countdown to surgery. More musings, possibly deranged (but don’t get your hopes up), will be forthcoming when I get home from tomorrow’s surgery. Carrie will post an update in this space when there is one.

In the meantime, I have become quite concerned about the lack of visibility of thyroid cancer in the stuffed animal world. As you may know, breast cancer has an enduring association with teddy bears. So, in the interest of promoting thyroid cancer stuffed animal awareness, I give you the thyroid cancer hedgehog.

Update on Jonathan’s Surgery

Jonathan got out of surgery this afternoon at 4pm and is now resting in the recovery room at Montreal General Hospital. He’ll be in recovery tonight and will move to the ICU for the weekend. Following Jonathan’s lead, I too will tell you exactly how it is, without overwhelming you with too too much detail.

Jon’s surgery took almost all day, from 9:30am-4pm, a long haul that culminated in the surgeon successfully removing the rest of his thyroid and 30+ cancerous lymph nodes in his neck. The vocal nerve on his left side that was at-risk due to the surgery is intact and working, though at present it is not working well enough for him to breathe on his own. The nerve is “stunned,” as the surgeons said, which is likely a result of the physical trauma of the surgery itself. One surgeon said the nerve had been stretched. As a result of the nerve being stunned/stretched, Jon will be intubated (have a tube down his throat and be hooked up to a breathing machine) from now until Monday afternoon, at which point one of his surgeons will check to see whether the vocal chord is fully working, thereby enabling him to breathe on his own. The surgeons decided to keep him intubated over the weekend to see whether the nerve just needs a few days to recover. While I cannot fully explain the relationship between the vocal chords and our ability to breathe, I know that there’s an intimate relationship between them and our ability to control the esophagus/windpipe interface. What I know is that he needs that left vocal chord to be able to breathe and swallow properly without outside intervention.

If on Monday he is unable to breathe by himself, the surgeon will give Jon a tracheostomy — making a hole in his windpipe (covered by a valve) bypassing the vocal chords so that he can breathe. Most likely this would be temporary. Everyone involved with the surgery indicated to me and Muriel (Jon’s mom), that they think the nerve will become fully functional. The issue at present is whether it will be fully functional by Monday afternoon, when the tube will be removed.

Muriel and I are hanging in there. We are a bit exhausted from the anxious waiting we did today. We will see Jon tomorrow morning. I do not expect him to really be that aware of us when we do see him, since being intubated requires that he be sedated (being intubated is apparently very unpleasant if you’re not sedated; it induces a gag reflex). He won’t be able to talk while that tube is down his throat, but I’m sure he will appreciate our being there. From his two surgeons’ estimates, it is sounding like Jon will be in hospital for at least 6-9 days.

We are grateful to you all for your support and concern. As things progress, I will send make additional posts.

–Carrie

Update on Jonathan’s Surgery

Jonathan got out of surgery this afternoon at 4pm and is now resting in the recovery room at Montreal General Hospital. He’ll be in recovery tonight and will move to the ICU for the weekend. Following Jonathan’s lead, I too will tell you exactly how it is, without overwhelming you with too too much detail.

Jon’s surgery took almost all day, from 9:30am-4pm, a long haul that culminated in the surgeon successfully removing the rest of his thyroid and 30+ cancerous lymph nodes in his neck. The vocal nerve on his left side that was at-risk due to the surgery is intact and working, though at present it is not working well enough for him to breathe on his own. The nerve is “stunned,” as the surgeons said, which is likely a result of the physical trauma of the surgery itself. One surgeon said the nerve had been stretched. As a result of the nerve being stunned/stretched, Jon will be intubated (have a tube down his throat and be hooked up to a breathing machine) from now until Monday afternoon, at which point one of his surgeons will check to see whether the vocal chord is fully working, thereby enabling him to breathe on his own. The surgeons decided to keep him intubated over the weekend to see whether the nerve just needs a few days to recover. While I cannot fully explain the relationship between the vocal chords and our ability to breathe, I know that there’s an intimate relationship between them and our ability to control the esophagus/windpipe interface. What I know is that he needs that left vocal chord to be able to breathe and swallow properly without outside intervention.

If on Monday he is unable to breathe by himself, the surgeon will give Jon a tracheostomy — making a hole in his windpipe (covered by a valve) bypassing the vocal chords so that he can breathe. Most likely this would be temporary. Everyone involved with the surgery indicated to me and Muriel (Jon’s mom), that they think the nerve will become fully functional. The issue at present is whether it will be fully functional by Monday afternoon, when the tube will be removed.

Muriel and I are hanging in there. We are a bit exhausted from the anxious waiting we did today. We will see Jon tomorrow morning. I do not expect him to really be that aware of us when we do see him, since being intubated requires that he be sedated (being intubated is apparently very unpleasant if you’re not sedated; it induces a gag reflex). He won’t be able to talk while that tube is down his throat, but I’m sure he will appreciate our being there. From his two surgeons’ estimates, it is sounding like Jon will be in hospital for at least 6-9 days.

We are grateful to you all for your support and concern. As things progress, I will send make additional posts.

–Carrie

Source: Thyroid Cancer Superbon

Monday Night Update on Jonathan (Update #2)

Hello friends, family and colleagues:

Thanks so much for all of the well wishes you have sent to Jon and I in the past few days. I wanted to write with a brief update to tell you how he’s been doing since his surgery Friday.

Jon spent the weekend in the post-op recovery room, because there wasn’t a bed for him in ICU. The care he received there was fantastic, nonetheless. To every last person, the nursing staff at Montreal General Hospital is simply incredible. Last night, Jon was able to be moved to ICU, where it’s a bit more peaceful. And this morning he was extubated (the tube that enabled him to breathe was removed). After his surgeon took a look at his vocal chords and throat, he determined that there was a lot of swelling, so much that he didn’t think Jon would be able to adequately breathe on his own without a tracheostomy, so they put one in. A tracheostomy is a breathing tube that is surgically implanted into your windpipe via your neck/throat. It looks a little bit like Jon has a “spout.” Sounds unpleasant, I know — and from the look on Jon’s face, it isn’t very comfortable for him right now. But he’s managing. He’s not speaking right now — the tube is very large, and in the next couple of days he should have a smaller one that makes it more possible for him to speak. We do know that he can speak, because he did one time, when his doctor showed him how with the trach.

The surgeon tells us that his tracheostomy will be temporary. It might be in for 4-6 weeks. Each week they will switch to smaller tubes, toward the goal of permanently removing the tube. Over this time, the remaining vocal nerve in his neck should have the time it needs to heal. Basically, all of this will happen in, and only in, its due time.

Muriel and I are spending lots of time with Jonathan—as much as we can—-reading him the newspaper and having light conversation and otherwise just being there — he doesn’t talk, but occasionally writes us and the nurses notes.

Jon cannot have any other company except us yet until he is moved out of the ICU into his own room. He’s eager for company, so when he’s able to receive visitors, I’ll get the word out. Even now, with pain meds and under various states of sedation, he’s the uber-social man we all know him to be.

All my best,

Carrie

#3: Update on Jonathan

Jon got his own hospital room on Tuesday and is no longer a nomad in Montreal General Hospital. He’s becoming more and more self sufficient, and is going for walks down the hallways of the hospital–not running any races, mind you, but able to ambulate on his own. On Friday his surgeon extraordinaire, Dr. Richard Payne, will be visiting to see how his left vocal chord is doing. He’s scheduled to be in hospital until at least next Thursday, Feb. 25th. On Wednesday the 24th, he’s scheduled to get a smaller (thinner) trach tube, which should enable him to swallow more easily and begin to talk a bit. He needs to have that smaller tube to leave the hospital, and must be able to swallow. He’s making great strides each day.

I’ll have another update Friday, after we talk to Dr. Payne.

–Carrie

#4: Update on Jonathan

Jonathan has made great strides in the past two days — needing less and less pain meds, up and walking laps through the hospital hallways, and fully able to bathe himself and dress. He’s no longer on any IVs, and has had his feeding tube removed, which is a relief. Interestingly at Montreal General, you eat by ordering room service. I literally pick up the phone in his hospital room, and order from a menu of food options that include several vegetarian choices. Amazing. I can’t tell you how tasty it is. Jon is just happy to be eating on his own, so it all probably tastes good. Everything he eats has to be thickened, so his apple juice is like pudding. Mmmm…..

We thought Jon might get a smaller tracheostomy tube today, but it sounds now like he’ll get a smaller one on Tuesday, with the idea that he will no longer need any tracheostomy by Friday the 26th. We are hopeful that this will be the case. With a smaller tube he’ll do more breathing through his nose and mouth, and be able to move more air through his vocal chords, enabling him to speak.

All in all, he’s doing remarkably well. Will make another update in a day or two!

–Carrie

Cancer Crawl Feb 20th

Well, it’s more like a slow amble up and down the hallways of the 18th floor of the General, back and forth. At least 4 times a day. Through the miracle of tethering, I have managed to get onto the internet with Carrie’s laptop and type something, and I am probably breaking a rule. Didn’t Foucault say something about hospitals and jails?

Anyway, I have been gradually coming back to personhood over the fast few days. 2 days in pants. 24 hours narcotic free now, though the tradeoff is, well, pain. My neck feels like it has been rearranged. Because of course it has. There’s a new hole in my head. It’s hard to describe the “new tracheostomy feeling” but I can offer an exercise that probably works for any major body modification. Imagine a range of things that you would find it disturbing for others to do to your neck. Now imagine that you’ve become comfortable with half of them. Congrats, you have accepted your new trache.

I still can’t talk at all. In my head, it’s all logorrhea (see: this post) but all I have is a pen and a pad of paper. And gestures. I sort of eat and drink, which is better than the prior arrangement. And everyone seems optimistic that I will leave the hospital without a tracheostomy at all. But right now that could be a week away or longer, and will probably end with me still coming back here to sleep for observation but going out on “day passes” (like jail). And nights are the worst part of being in the hospital.

All I’ve had time to do is think and listen to music. Tom Rice’s work on sound in hospitals convinced me that the risks of bringing in an iPod were well worth the possibility of theft and the music has been a lifeline. On a tip I downloaded the new Massive Attack album and while it’s no life changer like the 90s stuff, half the songs are really, surprisingly good. Lots of spacey electronica too. Also it’s been an avenue of exploration as it turns out I am one of a small group of people who experiences vivid visual hallucinations with dilaudid (I’m not sure I will write about them here but I will be happy to describe them to anyone who wants to know–now I understand bad heroin art a little better, and I will not soon forget them though I’m happy to be past that stage). I’ve also written what feels like books in my head. They sure were interesting at the time though I am somewhat skeptical of their longer-term potential as next-project potential as the opiates exit my system.

A smartphone is even better in that regard and now that I’m 100% lucid, I will be gradually getting back on line at least as a consumer. I will finally watch the Yacht Rock series on YouTube.

There are a million other things I want to say but it’s not yet time to say them. I just want to say thanks to everyone who has written, paid attention, or been able to arrange a visit. Getting sick is a quintessential experience–it’s intensely depersonalizing, personal and national all at once. It has meant a lot to me to hear from everyone, and even when I was only a little lucid and had just gotten out of effectively 3 days in anesthesia, Carrie was reading to me from emails and it was great. So thanks for that. I will now be able to read emails directly, so you can write to me and save Carrie the trouble of mediation, though you can write to her too. Obviously, I’m not “back in the office” and have no interest in what lies in wait for me at work, but it seems that being in touch is good so I’m going to roll with that since I’m in here for a good few more days. So I would be happy to hear about your life. Apologies for necessarily short responses when I’m not sitting at a laptop which is definitely not staying with me in the room.

Anyway, maybe I’ll write more in a day or two when a) there’s real news or b) I am inspired. I could do 1-liners via the iPhone, I guess, but there’s Facebook status update for that.

Cancer Crawl Feb 21st

Weekends here are pretty quiet, which is actually kind of nice if you’re going to be trapped here. We had a couple visitors and the neighbors complained about the laughing (wasn’t mine–I’m inaudible).

The latest news, though still unofficial, is that I will be home, with my neck sewn (back) shut, by a week from tomorrow. But of course that’s an estimate and a lot can happen between now and then. I’ve been taking pictures of the place and documenting it, as not everyone winds up in the ostomy ward. I also have lots of thoughts on socialized medicine, hospitals as modern institutions, and all the usual academic banalities that I want to compose. But right now I’m just happy for internet tethering. Meantime, I was thinking of doing a “gross Q&A” post where all questions of that sort could be dealt with, if there are such questions. The pain is fresh, the hole is new, so ask away and I’ll answer later in the week. Plus everyone else who is too freaked out can just ignore that post.

People are not shy about suggesting pain medication around here, and so I am actually going to upgrade a little bit tonight in hopes of improving sleep. Believe it or not, I’m down to chewable Tylenol right now.

Cancer Crawl Feb 22nd

I just downloaded WordPress for iPhone. They do think of everything, don’t they?

For better or worse, I have settled into a routine here. Part of that is coercive– no full blinds and they come and wake you up at all hours, because in hospitals theories of pharmacology trump those of sleep.

But I am also a creature who imposes order on my environment (Carrie is this way too). The hospital room began its life as bleak and drab as any dorm and I guess dorm living is the model I bring to it. Certain zones for certain things. We’ve got a couple posters up (Carrie’s idea) and have rearranged things as best we can. Today after waiting since Wednesday for a chair, I just stole one. I assert control over space in other ways, assuming control of an ever growing range of functions that used to be done by orderlies and nurses.

In this way, the hospital is like any other modern institution in that roles tend to aggrandize themselves and occlude other roles. Another way of thinking is that like the student, the draftee or the convict, the patient enters the hospital, is stripped of external subjectivity (initially), placed in the system and then developed, sometimes allowed to become self developing in certain directions to occupy a niche (the staff are perfectly happy to let me look after myself but I won’t be getting the keys to the medicine cabinet.)

I’m good at institutions and so since Friday have begun using those skills (as has Carrie with our systematic campaign of staff food bribes). The result? Better niche. At the same time, class privilege can backfire. I can’t speak but I can write. But what if my orderly does not read very well in English (or any other language)?

Okay, long and rambling and full of typos and hard to edit but we will see how this develops.

Updates: thanks to all who mocked me on pain meds. It turns out that codeine and Ativan go very well together at bedtime.

Also, I keep discovering stuff about the area of my body below my eyes and above my armpits. For instance, my taste is all off, I keep finding numb spots and I can breathe in through my nose but not out. One friend wishing me well before surgery said “it would be just like Avatar except you’ll wake up in Jonathan”. Boy was that right!

Cancer Crawl, Feb 23rd

Today I spoke for the first time since February 12th. Technically that’s not true since in the ICU they got a “1 2 3 4″ out of me on the 15th but I was under heavy sedation. Apart from that, I have been communicating with a pad of paper and with keyboard devices when given the opportunity.

I got my trach downsized first thing this morning and it makes a world of difference to my swallowing, my breathing and my speaking. I can plug the hole and breath through my nose in and out, and my voice sounds more or less like my voice. Not quite as good as before surgery but certainly worth feeling good about. Or rather it did at 7:30am. By the time my mom left for the airport at 2:15, it was pretty hoarse (though still not as bad as after the surgery in November). Totally worth it. Also, the taste thing seems to be subsiding. If I am lucky, I will be drinking water tomorrow like a normal person and off those insipid thickened liquids (there will be test results in the morning). But there is more weird diet stuff for me in the near future.

I’ve been scheduled for Radioactive Iodine Therapy (RAI) on March 10th at the Jewish General, which is great. The sooner, the better. I do not want to be fully recovered from surgery only to get beaten back down again. I’d rather take my shots now and then do all my recuperation in one shot. RAI can also mess up your taste buds and offers a number of other unpleasant side effects which I won’t bother detailing, but there you go. It’s 2.5 days in isolation and at the end you have to throw out your clothes. Both my cats went through it, except if I’m lucky I’ll find a way to have internet. In preparation, I will be on yet another special diet, so locals please hold back on the food gifts for now. When I get home, it’s going to be all “vegan low-iodine chef” for awhile. I will make it be better than it sounds.

Cancer Crawl Feb 24th

This one will be brief as I’m beat. This morning, they tried to “cork” me, which is what it sounds like. You put a “cork” in the trach tube to force beeathing through the nose and mouth only. I had a hard time breathing out–probably because my trach is still pretty big. Later in the day I was “taped” — an imperfect solution but more practice for corking than anything. I’ll spare you the details but it was a difficult and I’m pretty sore. Here’s hoping tomorrow’s corking goes better.

Cancer Crawl Feb 25th

After all the talk of corking, there was no cork. I wore tape all day, gradually re-learning to breathe through my nose and mouth without the help of an extra airway (I was allowed to remove the tape if I couldn’t get enough air). As I mentioned last night, the difficulty is not breathing in but exhalation, probably because there’s a giant tube in my trachea that’s now blocked. Struggling to exhale is a strange sensation, though. Like the inverse of drowning. It got easier as the day went along, and prompted by a resident who said i should do more to push myself, I was close (though not quite) to full speed in the halls and late in the day on the stairs. My next test, which begins now, is to make it through the night with the tape. We shall see what morning brings.

Cancer Crawl Feb 26th

Today was the big day: around 7:30am the residents (not the band) came by and removed my trache. In its place are some stitches, though they don’t close the hole perfectly. So there is still some healing to be done and i need to be observed for a few nights. But overall it feels great. Much easier to breathe than being taped and and it feels good to be back “in” my nose and mouth. On the downside, I seem to be a victim of a long hospital stay and have picked up some kind of nasty intestinal bug (of course they are doing tests to see what it is). This morning, after a particularly rough night I was prepared to check myself out today or tomorrow, but my doctor stopped hy and talked me down, so it is at least a couple more nights in here. On the plus side, I may get a day pass tomorrow. After 15 days, I sure could use it.

Cancer Crawl Feb 27th

I’m now getting so close to out that I can taste it. Literally. Today, after a visit from a resident and signing a liability waiver for the hospital, I was let out on a day pass with an 8pm curfew. Of course all I did was go home but the drive through the city was almost magical, and it was nice to be in a beautiful space with Carrie and the cat. Carrie took a long nap, of which she no doubt needs dozens more. I took a shorter one on the couch with the cat. Other highlights include sitting in comfortable chairs, reading today’s news today, listening to music on speakers and preparing my own dinner with actual fresh vegetables (the worst of the GI distress appear to be passing, although I played it safe).

Not everything is perfect by any means. In my mind being home was all going to be easy, but I’ve still got enough pain and constriction that doing a load of laundry or preparing food is a little more involved than I remember or imagine it being. The stoma is healing slowly, no doubt slowed by my use of a CPAP at night (a treatment for sleep apnea). And there is an unpleasant swelling behind my right ear that ebbs and flows. I guess I would normally find it somewhat alarming but after the last 16 days I find it mildly bothersome, and since the medical professionals are in wait and see mode, so am I. My voice is pretty weak, probably because my trachea is still healing, making it hard to talk on the phone. I’m not supposed to talk much anyway for the next few days. And just so I don’t forget, I have to press where my trache was every time I talk, cough, sneeze or swallow. Otherwise, I can sometimes hear a little air escape. So now I will relax with some magazines or YouTube, go to bed early, and hope for the best in the morning.

Cancer Crawl Feb 28th

Home after 16.5 days in the hospital.

Tonight, I sleep without being awakened for scheduled doses of drugs I may or may not need. Tomorrow, I bum around the apartment and cook dinner for Carrie. Anyway, the last “hospital” update unless things suddenly go south, and I really hope they don’t.

Here’s the letter I sent to my “distribution list” since not everyone follows this blog. I’ll keep posting big news here, and I have some reflections and pictures to share, but the updates might not be daily. We shall see. Given what’s going on in the US, and what the news has been reporting here, I am dying to write about my experience of Canadian healthcare. And my mom’s. Though in a way it’s premature since I’ve got a ways to go yet. On the other hand, jotting things down as I go has been helpful, as I imagine I will write more about this whole experience at some point. At least I’ve gotten encouragement to do so both from colleagues and doctors so we’ll see if something of substance develops as I gain some distance from the whole thing.

Dear Friends and Colleagues,

I know some of you have been following the saga on the blog, others have been waiting for news via email. After 16.5 of the most difficult days of my life, I am finally back home from surgery and hospitalization (I did have a day pass yesterday but it was with an 8pm curfew). I am lighter one full thyroid gland, dozens of lymph nodes and several pounds (wow, these jeans are kind of loose) and I’ve been trached and de-trached. I’m not totally out of the woods yet. Although, the trache is out, the stoma is closing slowly, which means I need to limit my talking for the next few days, which means I will stay off the phone and probably limit visitors until at least the middle of the week. I also have some unpleasant swelling elsewhere in my neck but the doctors are in wait-and-see mode and therefore I am too. Other than that it’s basically bumps and bruises and a hospital-grade GI virus that has worked its way out of my system after a 48 hour riot (happily, I learned today that I tested negative for c difficile).

On March 10th I am due to receive radioactive iodine, which will take me out of circulation for at least 3 more days and may bring with it other unpleasant side effects. But it can’t possibly be worse than what I’ve been through (strange metallic taste in my mouth rendering food unpalatable? Been there, done that.) When I do start accepting visitors, I won’t be accepting gifts of food (no exceptions) as I’m on this esoteric low-iodine diet so that my cells will be more receptive to the radioactive iodine that I get dosed with on the 10th. (The diet is esoteric enough that Montreal General’s kitchen actually couldn’t accommodate it, although in practice all it means is that I’m a vegan chef for 11 days–no dairy allowed–and must use non-iodized salt and avoid certain other random foods high in iodine) It’s unusual for things to happen this fast, but I told my doctors I wanted to get it over with and they have been very accommodating.

There’s always more to say and to tell, but for now please accept my broadcast thanks for all the messages of support, emails intended to relieve boredom and efforts by locals to cheer me up or to look after Carrie. It’s all appreciated and has made a major difference in my recovery and morale during a very difficult time.

For those seeking greater detail about the last 16 days, it’s all up there for the world to see on http://superbon.net so I won’t repeat it here. Again, my sincere thanks. More personal notes to come.

Sincerely,
–Jonathan

What’s the equivalent of “Stockholm Syndrome” for Hospital Patients?

Yesterday was one hell of a lesson for me. By the end of my hospital stay, I had an unrealistically positive view of my physical state: I hardly did anything except sleep, sit and stroll up and down the halls (and stairs). Compared to the other patients, I was in great shape, and I needed less and less help from the nursing staff and orderlies. There’s no question I was ready to go home. The doctors signed off and said to go to the ER if there was anything serious.

And yet, getting home was another matter. Yesterday I tried to do way too much. “Taking care of myself” in the hospital involves ordering my own food, bathing myself, administering most of my own meds (except for controlled substances), and asserting some control over my schedule. That is not the same thing as living a normal life at home, which I thought I could do. Over two days I cooked, did laundry, talked on the phone (an especially bad idea right now), talked some more and zipped around the apartment. I even talked Carrie into making a couple stops on the way home from the hospital yesterday. Predictably, by the evening I was totally exhausted, dizzy, weak and even a little disoriented. I went to bed early and woke up around 2:30am wondering if there was something really wrong. And if there was something really wrong, should I go to the ER and wait hours to be seen? (Don’t get smug, Americans–it’s happened to me in the US.) Had I made a mistake and come home too early from the hospital? After sitting up contemplating that riddle and changing my bandages, I listened to music until I fell back asleep. Of course, there wasn’t anything acutely wrong. My body has been rearranged and rendered strange to me and I’m in recovery from it all, so everything is a little wrong.

My surgeon was kind enough to see me this morning and he reassured me that I’m fine (“you look great,” he said, after admiring his handiwork on my scar–”great” clearly being a relative term), but that I need to slow way down and talk even less. He explained to me what signs of real distress might be. And so today it’s been sitting at the computer, playing video games, eating prepared food (last night I cooked dinner–seemed like a good idea at the time) and napping with the cat. I’m spoken almost not at all. I still feel weird but much better. Tonight, Carrie and I will continue catching up on TV.

He also mentioned a couple other things: people start to go crazy after awhile in the hospital (he’s not the first to mention that) and people often get depressed after radioactive iodine treatment so I should watch out for that as well. It’s “the body’s way of dealing with it, he said.” And apparently, the mind’s. I’ve spent most of my adult life fairly confident in my self-knowledge. The challenge before me now is to retain a certain openness toward my experiences of self, as so much is different all at once.

Losing Myself

It’s been an up and down couple days. Sleep is erratic–sometimes great, sometimes terrible–which of course leads to erratic feelings of wellness or lack thereof. I also learned that I may have to spend an extra two days in the hospital next week essentially to keep a room for when I really need it starting Wednesday. That’s really disappointing (though certainly not beyond the absurdities of bureaucracy one finds in hospitals or for that matter universities). But of course I am grateful to my doctor for setting it up that way if that’s the only way I can be guaranteed a room (which I very much do need for the two days I am radioactive). We shall see if I can at least finagle day passes again for Monday and Tuesday, but I probably won’t know until immediately beforehand. It’s a different doctor on my team and a different hospital–Jewish General. If you feel like peeling off a very long and descriptive email to someone next week (especially Wednesday or Thursday, if I can manage to get email in the joint again), I would be a grateful recipient.

I also spent a couple hours reading and commenting on some student work today, and I have to say that I felt more alive doing it than at any other time in the past few weeks. It wasn’t always easy to stay focused, and who knows if my comments are any good in my present condition, but it was nice to be operating in the world of ideas. I don’t think I’m quite ready to revise my own writings or read any thick theory or anything but the combination of ideas and other people took me out of myself, which was really, really good. I will try that again tomorrow. It sure beats sitting around and thinking about how I feel, what particular aspect of my condition is making me feel that way, and how I might feel at some later point.

Also on the good news front, there was evidence of healing when we changed the bandage today. Slowly but surely.

Source: Thyroid Cancer Superbon

Cancer TV Reviews

My tastes in audiovisual entertainment tend to run toward the escapist in good times, and in tough times even moreso. Luckily, even though we do watch the usual “high middlebrow” TV (HBO shows, Battlestar, Damages, etc) we can’t keep up with all of them, which has left a nice little backlog for my recovery period. However, my criteria for watchability have changed somewhat. For instance, I normally like medical dramas (I watched ER for years) but I never got into House. A friend loaned it to us and I thought it would be perfect. Except that it’s not perfect for my state of mind. Every episode there is a mystery illness that Dr. House and his team must figure out and cure, and in the process the patient gets better, gets worse, and gets better again. In my current state? Not fun to watch. Especially because there’s a certain medieval dimension to cancer treatments. I mean, they’re thoroughly up to date, but they are clearly a case where the body is brutalized in order to be cured. The Canadian show, Bloodletting and Miraculous Cures showed more promise as a more straight up medical drama (aka “nighttime soap opera”), though the last episode I watched (a few weeks ago, granted) was kind of unwatchable so it’s on notice.

Based on my reaction to House, you would think I would find Breaking Bad also too difficult to watch. A high school chemistry teacher in New Mexico discovers he has inoperable lung cancer even though he never smoked. Worried about providing for his family after he’s gone, he turns to cooking crystal meth while telling his family he’s borrowing against his pension. Mayhem ensues. The show is very dark. This one should also hit too close to home. My uncle, who never smoked, died of lung cancer (though one wonders about asbestos in the Library of Congress, where he worked). I had that mystery spot in my lung, etc. etc. But I love it. Perhaps it’s the dark humor (not a comedy per se, it has its hilarious moments). Perhaps it’s the absurdity of the show and the prominent role that money and insurance play in the characters’ decision making (or in their denial). But somehow it perfectly fits my mood.

In recovery news, things are still moving slowly. I spoke (more like whispered) a little more to Carrie last night because I was sick of not speaking, but I’m still writing notes. I appear to have a new diurnal rhythm for the time being as well. It used to be that I would wake up fresh and do my best thinking in the morning. That is no longer the case. It seems afternoons are much better. Even late afternoons, which used to be my worst time. Weird. It’s not quite the hospital where every day I was discovering or learning something new. But there is still this process of basic discovery going on, trying to figure out what works and what doesn’t.

Also, my endo returned to town and swooped in to the rescue (I should also credit his assistant, who took pity on me when I called). So I will only be in hospital next week when I need to be, ie, while I’m radioactive enough to be a danger to other people. Wednesday, Thursday and part of Friday. Somehow, that seems much easier to take. Monday and Tuesday I go in for shots, but that’s just a glorified errand.

Look Who’s Glowing Now

…and I don’t mean to announce that I’m pregnant.

I’ve timed this post to appear at approximately the moment that I receive a rather large dose of radioactive iodine at the Jewish General Hospital. I have hatched a scheme so that I may be able to blog from inside my isolation room, but we will have to see how things go and how I feel (as with everything, there’s a long menu of side effects and I don’t know which ones I will get). In case that’s not possible, I just wanted to join the other two men of the household who have had radioactive iodine therapy in blog fame. You can see previous posts on the topic here and here.

I will be in isolation for approximately 48 hours, and then sent home. I’ve got old clothes, my own food (the hospital does provide food but they don’t do vegetarian low-iodine), and loads of entertainment and reading. And I bought the TV and brought the TV guide. Someone will go over me to make sure my levels are acceptable and Carrie will come pick me up on Friday.

After isolation, some residual radioactivity remains for a week or so though the levels are actually quite low and safeguards are largely symbolic. I am not supposed to cuddle small children or animals for long periods of time, at least not on my neck, and it would be mildly dangerous for a person to drink my urine or saliva. Happily, none of these things is a concern–except for the cat (but he’s more into laps than sleeping on my face).

So it all comes down to this. After a lifetime of opposition to nuclear arsenals and nuclear power, nuclear medicine is going to contribute to saving my life. I have no idea what that means.

Source: Thyroid Cancer Superbon

Houston, We Have Liftoff

I feel like I must be living in the future. First, I am radioactive. I don’t actually glow, but I am in this isolation room and people are afraid of me. Radioactive iodine comes in different forms but I got it in capsule form. Actually, they gave me so much it was divided between two capsules. The resident walked in around 1:30, and he had this small drum on wheels with a long handle. Inside was a small pills bottle with two capsules. He explained various things to me, told me not to drop the pill on the floor about 10 times. I took them. Well, I took one. I thought of a question and started asking it. He interrupted me and told me to take the second pill. Then he took a reading of my radiation levels and basically ran out of the room And the isolation began. If the staff gives me something, they leave it on a table outside my room and if I open the door, everyone stands at least 10 feet away. By Friday I should be safe to reenter society, but for now I’m effectively in jail, or weaponized. Or a little of both.

But that’s not all. This room is pretty nice compared to my digs at Montreal General. it’s recently renovated and in classic Jewish fashion there’s a plaque on the wall commemorating the person who made the donation (the irony here is that the mitzvah of charity is supposed to be anonymous and not self-aggrandizing, which is one of the Jewish values, along with the idea of the sabbath, that I have always thought was a great idea). Which isn’t to say it shines like a US hospital room, but the paint is new, the TV is decent (not HD but whatever), and the bed and chair are comfortable. Curiously for an isolation room, there is no shower, but there is a sink and a bathroom and the drinking water is nice and cold so I’m not complaining. I’m supposed to drink a ton of water.

Without a doubt, I overpacked for this trip. I’ve got too much reading, too much to watch and too much to eat. Kind of wasteful but also a good idea since I didn’t know how I’d feel. So far the side effects are mild–mildly dry mouth and eyes and I get a tiny tinge of nausea after I eat, but it could also be a) the thyrogen shots I had M and T in preparation for my radioactive iodine infusion or b) all the pills I have to take with food right now, each of which warns about upsetting my stomach. I’m like an old person all of a sudden. Anyway, they say the worst feelings are in the first couple hours after they give you the pills, but until I’m out of here Friday, I’m not assuming i’m out of the woods.

I have teched up the room to an extent that I’m pretty sure there’s more computing power in here than a lunar mission. I’ve got my laptop, which I turned on before I went radioactive, and which I am controlling with an old keyboard and mouse from Carrie’s old imac. when I’m done, they will go into isolation for 3 weeks after which any residual contamination will have dissipated. My internet connection is via bluetooth through my iphone, which I have suited up in a latex glove. Oh, and I brought my broken PSP (used a lot to pass time on transoceanic flights, but the analog stick is broken when means that when I play Madden, I can’t kick) in case I got even more bored.

So, to sum it up, I am writing to you while radioactive from a room nobody can enter, via a radiation covered keyboard that will spend 3 weeks in isolation, a computer I can’t touch for the next 39 hours or so, and a latex-covered iPhone. This is the future, but it’s more a Battlestar Galactica than Star Trek.

During the next 24 hours, long descriptive emails will be especially appreciated. I’m also trying to catch up on the massive backlog, though I think it’s time to stop writing and watch a DVD. I still can’t really talk on the phone, alas. Tomorrow, assuming I continue to feel well, I read.

So close I can taste it (cliché appropriate)

If all goes well in about 19 hours I will be walking out of here with a bag full of stuff to hide in our storage locker for 3 weeks while its half-life expires, and a plan to eat a maximum-iodine dinner (oh how I love to transgress). Today was largely uneventful. I received many wonderful emails which helped distract me, and I also spent many hours reading offline–some magazines, some newspapers, and the manuscript of a book I promised to blurb (I figured I can toss the ms as I’ll get the book). I’ve still got the dry mouth and eyes, but as per my instructions I started on the sour candies around 2pm. the very mild nausea after meals seems to have subsided. You’re supposed to have sour lemon drops after 24 hours but I had no luck searching in my neighborhood, around the Jewish General, and in Westmount (near my doctor’s office). Must be a Quebec thing, or maybe I need a specialty candy store. So I bought these sour gummy-things. And I ate some and thought “these aren’t really that sour.” Then I stopped eating and continued drooling so I guess they are doing what they’re supposed to do–stimulate the salivary glands.

In other ways, I’m feeling great. it could be the time of day, as in my new body, mornings are slow and later afternoon is strong (this is the opposite of how I’ve been my entire adult life). it could be the prednisone, as one of the side effects is euphoria (and of course depression when you stop it. between that and the post-RAI depression I’m supposed to expect, I’ll be doing Pink Floyd and Bauhaus covers in my living room and brooding like Marvin the Depressed Robot in two weeks–I promise not to turn this blog into a whine-fest though–I will simply make my friends suffer me in person). Also I’m sitting here doing nothing and taking afternoon naps, so it’s easy to feel like I have all the energy in the world. I will try not to be an idiot when I get out tomorrow (as I was last time I got out of jail) but there is a way I can feel a return to my life, or at least parts of it, is just beyond my fingertips, and I want to reach out for it. That begins with taco nite tomorrow night, because I have calculated that our vegetarian tacos violate the tenets of the low-iodine diet in the largest number of simultaneous directions–soy protein, cheese, yogurt, bottled hot sauce (Valentina!) and beans with iodized salt. Now I just need something with red dye #3 in it to complete the collection (if I ate fish or seafood, that would be the other natural place to go).

Of course, I’m not done with cancer. Thyroid cancer is considered a chronic illness. It’s something that will be with me for the rest of my life and certainly in the near future. There are follow-up tests starting next week. There could well be another course of radioactive iodine. There will likely be external beam radiation, which can be a month of pain and debilitation. And I was given a 33% chance of needing another surgery within 10 years (now that I dread after the last one, and i know my surgeons do too). But all that is in the future. Other than the tests, we’re talking about a few months’ time or a few years’ time. Not next week, not even next month. So I will have a chance to recover now, which is good.

I’ve had lots of time over the past few months to evaluate my life. It’s about time. I am ending an unplanned 5-year stint as an administrator as of June, a lot of people just spent a lot of energy saving my life and my voice (or some part of my voice anyway), a lot of other people just put a lot of energy into providing me with all sorts of personal and emotional support (you’re not done yet! sorry.), and I turn 40 in August, and which means it’s about halftime if I’m lucky (looking at lifespans in my family). The time alone in here has actually been helpful for that as well, though of course it’s also been great to be in touch with the outside world. Speaking of which, I have some emails to reply to before settling in for a little bad prime-time TV. The rest I’ll do tomorrow morning, as I’m sure I’ll be antsy while waiting for the resident to show up with his Geiger counter. I’m not kidding. I was 96 microsieverts per hour at 2 meters on Wednesday right after the pills went down.

Free!

I’m down to 10 microsieverts per hour so I’m free to go. But no public appearances for 3 days as I can’t be near pregnant women and you never know who’s pregnant. So Carrie’s doing the shopping. Also, I can’t prepare food for you and you can’t snuggle with my neck for 3 days. Also for 3 days, in general you should maintain a 3 foot distance from me. That is all for now. I’m going to touch the computer to close it. Thanks to everyone who read and wrote. Because of you (and possibly because of prednisone) I’m sure this was the Best. Radioiodine. Isolation. Ever.

Cancer Crawl, 13 March

This is the email I sent out to my distribution list today. Now, for a high-iodine lunch!

Dear Friends and Colleagues,

Here’s the latest cancer update. For those of you following the blog (http://superbon.net — I’m on a roll) the RAI news immediately below the headlines is old news.

HEADLINES: I was really radioactive, now I’m only a little radioactive. I was in the hospital for 48 hours (for safety and isolation purposes, not because anything was wrong) but now I’m home and recovering. We’re on a wait-and-see with the next steps. My voice is starting to recover a little. I feel surprisingly good but it might be steroids so we’ll see how I am in a few days when I’m off them. So for the next week I am laying low and not doing too much of anything while I try and get a sense of where my body really is at. But I am really ecstatic to be home.

Details for those who want them. As usual, apologies for the long rambling email but I didn’t have time to write you a short one.

Radioactive iodine treatment:

Yesterday I arrived home from the hospital, again, after completing my radioactive iodine treatment. Checking out is almost a routine now, though if I’m lucky I won’t have to spend an overnight at a hospital for a good long time. For “normal” thyroid cancer patients (which I am not), RAI happens after the removal of the thyroid to clean up and kill off any remaining thyroid cells in the body, so that the thyroid cancer can’t come back or develop. Although there are years of followup afterward, for those “normal” patients, RAI is the last step in the acute phase of treatment. For me, it will likely be the 2nd of 3 steps.

Wednesday morning I checked into Montreal Jewish General, and I received two pills containing 175mcg of radioactive iodine around 1:30pm (that’s a very large dose for one sitting). The resident checked me out with a Geiger counter and then ran out of the room. I spent the next two days in isolation. The nurses contacted me by phone or by yelling through the door, and if I needed anything, they left it out on a table right outside my door and then ran away while I reached out for it. Anything that came into my room stayed there for the full 48 hours I was in isolation. But it was not really isolation . I rigged up a somewhat elaborate system so I could use my laptop and have an internet connection and yet not contaminate my laptop or my iPhone. Which was great, because even though I had a phone to talk on, my voice wasn’t good enough for real phone conversation. I blogged prolifically, and many people sent me long emails or even shorter ones (which I’d asked for), including some who were a total surprise. The nursing staff was great and solicitous, as was my endocrinologist, and the room was “nice” by Quebec standards, which means comfortable and sunny. Friday, the resident came back, scanned me, said I was good to go, and gave me a list of restrictions, the most serious for 3 days (no sleeping in the same bed as Carrie, use all my own towels and dishes, don’t prepare food for others, don’t be around pregnant women, don’t go out in public since I “never know who’s pregnant,” etc.) and then a few other minor things to do that continue for a week or two. The radioactive iodine dries you out, upsets your stomach and can do all sorts of other things to you. My side effects have been (thus far) blissfully mild. I feel like I finally caught a break. I have the dry mouth and eyes, and my voice got worse, and I notice that my taste is slightly diminished (though thankfully nothing tastes wrong or weird as can sometimes happen). Maybe there was some fatigue too the first couple days and I got nauseous once but brought in Gravol for that eventuality, and that handled it. All of these should be temporary. They also gave me a short course of steroid (prednisone) to prevent inflammation of my one vocal nerve. That may be having bigger side effects as I’ve been feeling a little manic or euphoric. Or maybe it’s the synthroid is kicking in, or maybe I’m finally starting to feel better after a month of hell. It’s hard to say, really. Every day feels like some post-hippie experiment with my body, but it’s never boring. They say depression can set in post-surgery, post-RAI and upon withdrawal from steroids (my course is only for 5 days) so next week I may be sulking like Marvin the Depressed Robot and playing old Bauhaus records. But I will force myself to get out of the apartment a little bit and do some activities to keep myself occupied and not excessively focused on being a cancer patient.

Pathology:

The remainder of my thyroid that was removed had “only” a 2.5cm tumor (which is closer to the normal range) with no necrosis and no calcification. Of 38 lymph nodes removed on the right side of my neck, only 4 had cancer. Lest you think my surgeon went nuts, we had a discussion before the 2nd surgery where I told him to be extremely aggressive on the side where I’d lost my vocal nerve (and the same on the other side if I had lost my other vocal nerve, which I didn’t, and so he was more careful). So he was, and I’m totally pleased about it. Although keeping the scar on my neck out of the sun for the next year is a tall order. I don’t see wearing turtlenecks on the beach. Will have to figure something out.

What’s Next:

Lots of followup and tests. I’ve had blood tests, and more will be done in a month. I have a whole body scan next week and will get the results a few weeks after that. A week from Tuesday I have an appointment with a radiation oncologist because I may well be having external beam radiation as the “final” step in this round of treatment. We’ve also got to figure out my correct hormone levels with medication now that I don’t have a thyroid.

External Beam Radiation:

My case was heard last Wednesday at “tumor board” and it seems there’s some consensus that I should have external beam radiation but not regarding some of the finer details including when. I’ll know more after my radiation oncology appointment on the 23rd. There are some serious downsides to EBR, but there are also downsides to another surgery in 5, 10, or 25 years. Statistically, my odds of needing another surgery in 10 years are a whopping 33%, which are not odds I like, so I will be keen to hear how the EBR affects that, versus the downsides (like the increase risks of other cancers near my neck). Neither surgeon ever wants to have to operate on my neck again, and I share their reluctance, so this will be a big factor for me. That said, EBR is extremely rare for thyroid cancer, and while I’ve found a few people who’s had it, the “survivor pool” is considerably smaller so the collective wisdom is thinner.

Endgame:

Just to be clear, there is no “cure” for thyroid cancer. It doesn’t kill you but it can keep coming back because it’s so hard to kill off all the tiny cells that may have become cancerous. So in a sense it’s a good thing that it’s a chronic condition because it’s not fatal, but untreated it can turn into something fatal (as it almost did with me) and certainly the treatments themselves can lead to other complications. It is not unheard of for thyroid cancer patients to have multiple surgeries or multiple courses of radioactive iodine, sometimes close together, sometimes years apart or more. But I probably won’t be sending out these updates forever. Things are acute now and I’m getting lots of questions. But I’m through the “normal” parts of the treatment and most of the major things that could go haywire already have or haven’t, so I’m definitely over the big hump on the roller coaster. They do say it takes the body a full year to recover from surgery and I’ve had 3 (plus the RAI now) so I’m expecting a slow climb to normality, which will be aided by my sabbatical and at some point briefly punctured by EBR if I go that route.

That’s it for now. I’m feeling surprisingly good, but that may change in a few days. I still don’t have a clear timeframe on a return to work but I am itching to return to a normal life (external beam radiation will eat 1-2 months of that somewhere down the road if I do it but it could be as long as a year from now—not because of “wait times” but because of the specifics of my case and that I want to spend 9 months of my sabbatical in California, where I won’t be undergoing major treatments). Already my voice is improved today over yesterday. Sometimes I can make the vocal cords hit one another and then my voice sounds like my voice, sort of. But it’s still hard work. It took me weeks to get to this point after the first surgery, so I’m optimistic about where this is all headed.

As always, thanks for your support and keep in touch.

Sincerely,
–Jonathan

The Vegetarian Low Iodine Diet and Strategies for Surviving Radioactive Iodine Treatment With The Aid of Consumer Electronics

I’ve written a bit about our adventures with the low-iodine diet, or as carnivorous Carrie calls it, “worse than vegan.” This post is for search engines and the vegetarian thyroid cancer patients who may use them in anticipation of radioactive iodine treatment, but of course you’re welcome to read on if you don’t fall in either category. I also detail how I rigged up internet in my hospital room to keep me occupied and in touch with the outside world for 48 hours.

It’s a long document, so I’ve made it a .pdf, available here.

What’s that Steven Wright joke about “around the block?”

First day off the ‘roids. I don’t know if they’re out of my system yet but I successfully took a short nap. Every day’s a new thing, though. This whole discover-my-body-all-over-again thing just keeps morphing. I can’t tell if it’s like some hippie drug experiment or puberty. Or both.

Since yesterday afternoon, I’ve been getting these mild dizzy spells which seem to be apropos of nothing. I have no idea what causes them, and nothing seems to make a difference when I have them. So I just do whatever I was going to do anyway (okay, not anything that requires me to be nimble on my feet or to operate heavy machinery). It turns out you can sort of get used to being dizzy part of the time.

I am going slow, but I am trying things. I was too sedentary after the first surgery, and since the second surgery I already have spent close to 3 weeks in hospital rooms not moving much, so it’s good for me to get out even a little. Today I took a walk around the neighborhood because it was nice out and because I could–my radiation levels are low enough that I’m allowed near pregnant women and therefore can go out in public. I just sort of weaved down the sidewalk. When I turned to go up St. Dominique, the street kept turning for a minute so I just stood there until it stopped. Weird. I stopped in a couple stores–to get my glasses adjusted, to pick up a couple provisions in the neighborhood, and there’s something reassuring about quotidian neighborhood transactions.

I also looked into the possibility of some kind of portable speech amplifier. Surprise: they appear overpriced for what they are, there is very little information about them online (like how they sound and how they can be modified), and the Canadian sales reps don’t seem to know much about their products. Also they’re kind of tacky and don’t seem to be built for the purposes for which I want to use them (social interaction, as opposed to public speaking–a speaker on my belt isn’t going to work at a party, a seminar, or a restaurant). So I am looking into other options. After the flash card experiment post-first-surgery, I’m keen to be able to actually go out and do things, but I need a way to be heard. In the meantime, there will be more speech therapy this week.

I’ve got a few more days of minor radiation precautions and then it’s all over. Apples still taste strange, though. Or rather, I don’t seem to taste the tart part.

On Language (Attitude Part 2)

M sent me this nice New York Times Blog piece. The language critique seems spot on, though I am still waiting for a proper “Politics and the English Language” of cancer. I think the author may also have gone a little too far in the “language can never describe it” direction, since of course language always fails but we use it anyway. No, the problem is the specific ways in which cancer language fails (at least in English).

1. As Barbara Ehrenrich has pointed out, it is inaccurate. The “battle” metaphor treats cancer as something that comes from outside the person when in fact cancer is inside the cancer patient. I can’t “battle” cancer because it’s not something exterior to me, and it’s not something over which I exercise will in any particular way. This is also a problem with a lot of the people who say attitude matters so much, and with some homeopathic remedies. They wrongly attribute intention to cancer. It’s not “out to get me,” it’s an aberrant behavior in my cells.

2. The emotional language is largely projection. People who haven’t been through it imagine how they would or wouldn’t act. The “brave” metaphor is fascinating because it has so little to do with my recovery and so much to do with how people think about what they would do in my shoes. The identification is good. “You’re my friend, let me imagine myself going through what you are going through and try to empathize”; or maybe it’s just people freaking out about my mortality and their own since we’re all living under a death taboo. But bravery or stoicism has nothing to do with cancer treatments. It’s all algorithms. The patient does not do much and in most cases, the doctor doesn’t even have many decisions to make (unfortunately not my personal experience but I’ll tell you that I wish it was). Mostly, the patient is. This is not to excuse myself from aspects of my own recovery over which I do have control, some of which are attitudinal (like making sure I take walks, trying to keep the lost weight off, etc). Only to say that the actual cancer treatment happens at a level over which my status as an intending subject has very little relevance.

3. There’s a certain seriousness and sanctimony to cancer language that is also debilitating. People have asked about or commented on my sense of humor through this thing and while I’ve managed to maintain it at least in this space, there are other times it has not been so funny (and I’ll eventually write about some of those too). Still, there is something fundamentally and existentially absurd about the experience, both because cancer puts you in positions you didn’t imagine (there’s that mortality thing again) and because it doesn’t actually have a given cause or meaning. Especially in the US, but even here, I feel like there’s a way that people want the sick or disabled to be somehow responsible for their afflictions or morally elevated by them. But this is rarely the case (I do admit to playing the “cancer patient” card now and then to do stuff I probably would have done anyway when I was well). There is nothing I personally could have done to not get thyroid cancer or to save my now-MIA vocal nerve. Cancer has not arrived with a moral message of any kind, and yet the symptoms and the treatment certainly have their punishing dimensions. As far as I can tell, my suffering has no pre-given meaning except that which I make for it. So we’re in absurd and existential territory. And absurd things, like nurses backing away from me and iPhones in latex gloves, are kind of funny when you write about them in a certain way. And why not laugh at it?

4. I really, really, totally and absolutely despise the “good cancer” language. I don’t want to hear it and I have no patience for it, even though I know people mean well. There is nothing “good” about it apart from the support I’ve gotten from family and friends. In point of fact, even though thyroid cancer is not usually deadly, it could well have killed me. I am not glad or grateful for it, nor should I be. I should be thankful for my privileges in life–the people around me, a stable job with good benefits and enough money (more on money in another post) and relative comfort, health and safety. Those are privileges. Getting papillary thyroid cancer instead of anaplastic or another deadly cancer is not a privilege, and it is not something for which I owe anyone or anything gratitude. I am, I suppose, “fortunate” (in the sense of “lucky”) because I’m not about to die from cancer. But by that logic, everyone who doesn’t have my particular aggressive thyroid cancer at this moment should be even more grateful and thankful, and that renders me pathetic and pitiful in some way that I’d rather not be (not that a little pity in certain situations has been so bad–sometimes that’s the best thing available on the menu, so I take it).

5. The NYT blog ends with this:

Strangely enough, although cancer threatened my life it also exalted it, brought with it a bright and terrible clarity.

So, no, cancer isn’t a battle, a fight. It’s simply life — life raised to a higher power.

The whole “cancer changed my life” discourse is also unfortunately close to “cancer is the best thing that ever happened to me”–the kind of revelation by limit experience that is the stuff of Hollywood movies. Sure, it puts things in relief since a) the cancer patient must confront his or her own mortality and b) the treatment gives you tons of time to think, even if you’re not thinking clearly. I turn 40 this summer, I’m stepping down as chair in June (I am not chairing at the moment, of course, but still), I’m going on my first sabbatical after 11 years of professing and 5 years of heavy admin, and there are a few other changes happening as well in the household. It’s a time of life to reflect, so a few weeks of inability (or limited ability) to speak, a ton of time alone in a hospital room (once the hallucinogenic effects of the dilaudid wore off) and more time at home afterward have naturally occasioned a head start on that life-assessment process, but I don’t think I will ever say that cancer was the best thing that happened to me or that it exalted my life. What it did and does is threaten to shorten my life, which does put a few things in perspective. Maybe something much crappier is coming in 5 or 10 years and so I shouldn’t put off things that I want do anymore. But that’s the case anyway and a good way to be whether or not I have cancer, since there are countless ways in which a life can be transformed or ended in an instant. If I had a choice, I would rather not have cancer and hope that I come upon whatever realizations I come upon without it.

There are a couple things for which we cannot blame cancer language. We can’t blame cancer language for being full of clichés. Most people aren’t poets, and I think one of the hardest things for people to get their heads around is that even though their own emotions may be deeply felt and meaningful to them, the actual range of human emotional experience is not all that great. We all feel the same stuff (in differing ways and amounts, sure), and so even though my experience is mine it may not be quite as special as I’d like to imagine that it is. Of course in my actual case, I have the unfortunate distinction of being a “special” thyroid cancer patient, but be that as it may, whatever I feel about it (or felt about my hospital stay or whatever) is certainly as well expressed by cliché as by some magical poetic phrase I enjoyed dreaming up because I am good at playing with words. At the same time, we can’t blame cancer language for being inadequate to the experience, because if language is never wholly suitable to reality, than “getting the cancer language right” isn’t going to suddenly make it full or coextensive with the experience. There will be gaps between how it’s described and how it’s felt and that will always be the case, not the least because there are certain things that can or can’t be said in certain situations.

Because of an extremely limited but still-present sense of propriety, I have, for instance, spared you details on this very blog regarding the “excretion” part of getting the radioactive iodine out of my system. The details aren’t particularly gory or harrowing, but you’re welcome.

The Loaner

My recovery this week has descended into the “slow slog” part. The good news is that I’ve avoided (so far) any sign of the crushing depression that’s been promised me (oh, there’s still time) but the bad news is that my voice seems to have gotten a little worse. I was warned that this might happen with the radioactive iodine, and probably the steroids took a few days to get out of my system and once they were gone some swelling returned to boot. I am starting to want to go back into work but the mechanics are simply impossible. Merely entering the Arts building would require to talk more than I am physically capable of doing right now. I am also refusing to talk on the phone at this point as the phone is particularly hard on my voice.

I had a killer speech therapy session on Wednesday, in the sense of “difficult” and “exhausting.” Speech therapy is a cross between physical therapy (moving stuff around) and singing lessons, more or less. It’s pretty fun, but there was a lot of trial and error. My speech therapist suspects that my trachea still isn’t fully closed and was actually able to make me make myself dizzy doing certain exercises — which we promptly stopped — but that suggests there is still a leak somewhere in the system. Also, my voice is still weak enough that talking at normal volume for me is sort of like yelling at full volume for you. Now imagine trying to have a normal conversation for an hour or two.

Thus, while I’m not depressed, you could call me impatient and slightly frustrated. I am lucid enough and energetic enough to take visitors, but I can’t really do a whole lot of socializing yet because the temptation to talk is too great and too taxing over time. So clearly I need a technological solution. I need a cane for my voice.

I spent time Thursday and Friday researching portable voice amplifiers, and next week one and possibly two may arrive for me to try out. They universally look lame, but they do seem to work work. I know this because my speech therapist kindly lent me a “loaner.” It’s reminiscent of the kind of “loaner” you get when a car dealer fixes your car and has to wait a week for a part–not the nicest unit on the lot, but it works.

Both the mic and the speaker are over 25 years old as far as I can tell. Radio Shack no longer exists in Canada and while “The Source” has countless things into which you can plug your iPod, there are no electronics nerd amplifiers like this for sale anymore. Which leaves me in considerably more pricey medical supplies markets. Anyway, the voice amp does really help, though I have to watch out for feedback. Friday night I was able to go out to dinner with friends, and while I was considerably less loquacious than I might be under better circumstances (pick up the mic to talk), I was able to make myself heard while more or less speaking at whisper volume. Of course I look like some dork televangelist sitting at a table with a mic and speaker, but I could make myself heard and participate in real time, as opposed to writing notes, which has been established as inferior. The units I ordered come with head or neck-mounted mics (you could use a lapel mic but since I want the speaker near my chest, the opportunities for feedback are too great) so I’ll look more like a call center worker and less like a televangelist. For a pretty penny, I can upgrade to one of the slightly more discreet mics that broadway actors use. Yes, I might seriously consider doing that if this is going to be a long term thing.

I should note that while whisper volume is my normal voice volume right now, I am not in fact whispering. Yet I noticed this winter when my voice was in similar shape that people would whisper back at me. Which it turns out is super annoying because they probably aren’t consciously doing it–it’s that thing where people raise or drop their voices to match your levels (useful knowledge if you ever want to diffuse an escalating conflict: speak more quietly and flatly). But I don’t want to be whispered to. I kind of feel like I’m being addressed like a child. Which is not really how I want to be addressed.

—-

In other news, M introduced me to the Hope&Cope Wellness Centre, where for the price of a possibly slightly demeaning intake interview you can get a free personal trainer and access to a surprisingly beautiful building about a block away from the Jewish General Hospital. The mean age of the clientele is closer to that of my mom than me, but it still has a certain appeal. All you need for access is to have cancer and to go through the interview–which I’ll do next week. I figure I’ll take all the perks I can get.

Friday was the Whole Body Scan–no news on that for a few weeks, probably. Easiest scan yet, though, and the I was grateful that the tech was thorough enough to do my neck twice just to be sure he got it.

USA Today ran a story on radioactive iodine treatment. The actual issues regarding decay of isotopes are not subject to interpretation or debate, but different organizations are setting different regulations and because it is radiation everybody freaks out and reverts to superstition. As a former radiation safety officer put it on the Thyroid Cancer Canada list, the “cooling off” period for radioactive iodine leaving the body is like the cooling off period for taking a pie out of the oven. If you know the composition of the pie, the temperature of the oven and the temperature of the room, then you know how long it will take to cool off. If it’s an hour, you can wait 3 hours but you don’t get any added benefit beyond peace of mind by doing so. That said, from the algorithms provided by said radiation safety officer, I don’t think I’d send someone with a high RAI dose to a hotel right after dosing, especially given cleaning standards in hotels. But I am no longer a public threat, even though I may set off alarms at the border for awhile.

Hope and Cope Retraction

My public apologies to Hope & Cope. The intake forms were a little repetitive and I had to write in a few things as thyroid cancer isn’t really a category for them. But that’s as far as my criticism can go. My intake interview was done by a retired teacher named Gwen who volunteers there and is a 25-year ovarian cancer survivor who must now be in her 70s. The word “badass” comes to mind although I’m pretty sure that’s not how she would describe herself. Also she regaled me with stories about how rough McGill was for Jews when she was an undergrad. I have gotten a weird feeling the few times I’ve been in posh downtown clubs at dinners for donors. Every time I go into a place like the University Club, I wonder how far back into the past I’d have to go in order to not be allowed in the door, and I fear it’s not all that far.

Anyway, my personal trainer seems pretty great. My routine is, well, harder than it looks. The words “stiff” and “incredibly out of shape” come to mind. But she clearly knows what she’s doing, which is what I wanted.

I can’t return the cancer, so I might as well enjoy the fringe benefits, right?

Confession

I posted the following note in our building’s basement garage this afternoon after sweeping up some plaster.

Cher Neighbors:

You may notice the new hole in the wall. If you happen to walk by our car on the street, you may notice the right side-view mirror hanging off the side of the car.

Yes, there is a connection between the two.

Rest assured we will pay for the repairs to the wall (it shouldn’t come out of the common fund) and we will purchase a smaller car when we return from California in the spring of 2011 (which will hopefully reduce the number of occasions we have to apologize for damage to the garage).

Sincerely,
–Jonathan (for App #2)

I haven’t had a dizzy spell since Saturday, so I decided (after consulting with Carrie) to take the car for a spin. I had a little retail therapy in mind for the afternoon and wanted to pick up some more onion bagels from Fairmount, as they are one of the breakfast foods that taste more or less like how I remember it tasting. The thing is, our car is this hulking Dodge Intrepid we bought in Pittsburgh in 2000, and our garage isn’t really designed for such a big car. We’ve scraped both back doors turning the corner to come in from the alley, and there’s a whole set of “tricks” to getting up the incline to the exit and backing out. When we return from sabbatical, we intend to purchase a smaller car, as this one was always on a 10-year plan. But today, I didn’t even make it out of the garage without screwing up. The passenger side mirror is now hanging by its cable and there’s a big hole in the plaster.

Was it an error in judgment after not driving at all for 6 weeks? Is my sense of distance off? Is it that it’s harder to turn my neck to the right? As with everything else that’s part of recovery, nothing is simply explainable by a single factor. (Both of us have come close to doing that before, so it’s theoretically an error I could have made pre-cancer.) Still, when I called Carrie to tell her the news, she said something like “how about I keep driving for awhile?” I think I’ll let her.

In case you’re wondering, once out of the garage, I successfully navigated my way around and did pick up the bagels. I had no success on the retail therapy end but that’s how it goes sometimes. I don’t think I was otherwise a threat to public safety, and I don’t really use the passenger side view mirror anyway, so I hardly noticed it. . . .

Speaker Voice Phenomenology, or “Just Another Asshole with a Bluetooth Headset”

One of the non-loaner headsets arrived last week. It is shockingly overpriced for what it is, and the amp has the hilarious name “Spokeman” which must be a mistranslation of either “Speakman” (as in “Walkman”) or “Spokesman.” You choose a headset to go with it and as I have a rather large head (hence outside the “one size fits all” range), I chose the most flexible one that could be worn over the top of my head, around the neck, or around the back of the head. It turns out the latter is the best for comfort, which means the mic sort of reaches around the corner of my mouth (that’s the big picture in the diagram):

The speaker hangs around my neck on a lanyard. It’s big and clunky, but so am I, and so that allows me to rock the chunky jewelry in this case. Although not by any means perfect, the system works way better than the loaner. We tried it for a couple short social events, and then yesterday the big test was a trip out to the Musée de beaux-arts, to see the incredibly commercial Tiffany exhibit. (What can I say? Glass is cool.)

As everyone knows but nobody reflects upon much, different compensations for different disabilities carry different levels of stigma with them. Eyeglasses are one thing, a cane is another, crutches are another, an artificial limb another, and so forth. A guy in a restaurant with a handheld mic gets a look from everyone walking in the door. The loaner stood out. But a head mounted mic actually appears to stand out less, at least in a crowd. So my flip assessment after one trip to a loud public place is that people are so used to other people walking around with extra equipment on their heads (earpieces, mics, headphones) that a guy walking around a museum with a head-mounted mic and speaker around his neck is just another random thing you see in a crowd and therefore not of much interest.

As to the sound, I’d call it tinny, but the truth is that I don’t hear it that well. The speaker projects out from my chest and is fairly directional. It allows me to speak quietly and be heard–which is the point–but it means I have to get used to not hearing myself and trusting the prosthesis. One of the reasons you sound so weird to yourself when you hear your own voicemail message (for instance) is that your normal perception of your voice has a bunch of bone conduction in it. You’re hearing it through your ears and through the bones in your head. I’m hearing my voice through neither, and the people around me hear it through a speaker.

I don’t know if this will be a permanent thing–probably not. But it will allow me to go out in public and/or operate vocally in groups of people while my voice continues to recover. My voice is finally showing some improvement over the last week (and speech therapy was much better), which is good news, though it is still slow going. It gets better in plateaus, rather than incrementally, so I have to just sort of wait to wake up with a new voice one day. That finally happened this week for the first time (this is how the recovery went after the first surgery so I am fairly confident that it will proceed in the same fashion again). The thing is, no matter how much better it gets, there will be another round of decline with the external beam radiation, but that’s such a giant can of worms that it must wait for another post.

Playing Asteroids with my Neck

Despite the levity in the title and whatever other cheap laughs I can elicit in the upcoming lines, this is a deadly serious post about making impossible choices.

You will recall that my doctors put the choice regarding the second surgery in my hands, which was not a decision I particularly wanted to have to make. Happily, I have been relieved of the decision regarding external beam radiation. Well, I could refuse it I suppose, but I appear to be getting unanimously told to do it. My surgeon said he’d send me to a psychiatrist if I decided not to do it. And last Tuesday, Carrie and I met with the doctor who is now “my” radiation oncologist, and he gave us the hard sell. So it was an easy decision to make. Right? Wrong.

The evidence pool for external beam radiation and thyroid cancer is considerably thinner than anyone would like, both in terms of doctors and in terms of patient lore. The medical algorithms all point in my case to doing it, but it’s not like breast cancer where it’s a standard procedure. In fact, it’s very rare. Back in the late fall when I started looking into external beam radiation and people who’d had tracheostomies for thyroid cancer, I had to go to the US thyroid cancer listerv because there was nobody on the Canadian list who’d had it. I’ve since connected with a 60-year-old woman in Ontario who’s had it, and now a couple others are appearing on the Canadian listserv. The US stories are well, scary. Partly it was the emotional state I was in when I got lots of helpful replies from generous people who’d been through all sorts of hell. And many stories had an insurance angle which was frankly also not something I was emotionally prepared to hear. Now that’s in the distance, and Obama’s new healthcare bill is in the can (far from perfect but I will grant that it’s a major improvement–now if only we could just get rid of the insurance industry).

Part of it is how people describe external beam radiation on the throat. More than one person said “the most painful experience of my life.” It’s not the treatments themselves that hurt but the cumulative experience over six weeks of radiation cooking your throat from the inside out, as well as a burn on your skin akin to a very bad sunburn. That phrase makes it sound cruder than it is–the radiation guns are very precise, and I get to wear some kind of Hannibal Lecter-like mask during the treatment (happily, I will not have to wear it in public, though it might be a nice match with my head-mounted microphone and portable voice amp just to get people to stare a little more). Apparently the machine they do it on costs more than our condo. So that’s good. And they seem to have a pharmacy of pain medications they’re willing to offer me, from topical salves to something called “magic mouthwash.” I will not be shy in availing myself of them. And although I’ll be going in five days a week for six weeks, the actual visit is about 15 minutes and happens like clockwork, and the waiting room is pretty gorgeous.

But the acute temporary side effects are rough. In addition to the pain, which will develop over time (not immediately but over the six weeks), I will gradually lose the ability to swallow solid food, so I’ll be on a liquid diet. Good for the waste line but not fun. I guess it’s the sequel to my “feeding tube and hospital-grade GI infection diet” from February. Though maybe ice cream will still be good. Except that EBR will also affect my taste buds again. As with the radioactive iodine, that too will be temporary but unpleasant. My voice will get worse again, and I’ll have a nasty cough and cough up all sorts of stuff. Then there’s the radiation fatigue. The acute side effects will subside over several weeks after the treatment.

All that is scary, right? Now here’s the even scarier part: EBR makes it much harder to operate on the area that is radiated. Now, I’m doing EBR because it cuts the chances of recurrence more or less in half. But half of the chances I’d been given is still a significant number. My surgeon gave me a statistic that 33% of thyroid cancers come back and require additional surgery, so EBR would cut my odds from 1 in 3 to 1 in 6. But my radiation oncologist said he recently saw a study where thyroid cancers that not only jumped the thyroid bed but got into the trachea came back at a rate closer to 70%. Cutting either number by 50% is great, but since I’m already in the “3 of 200-odd” category, even the better odds aren’t great. In addition to greater difficulty for the surgeon, it’s apparently harder for the skin to heal.

Compared to that, the other permanent side effects like decreased saliva production (I’ll be seeing more of my dentist, but I like her) and inability to grow part of my beard seem laughable. Though since I’ve worn a beard since age 19, I may be consulting some adult male friends on the mechanics of shaving if the remaining facial hear just looks too weird.

But that’s some serious consider-your-mortality decision making. Or more accurately “consider-your-morbidity,” since it is still unlikely the cancer would kill me, but if it comes back, it might be disabling in one way or another that I will have to deal with. My case was heard before tumor board, so a lot of people talked about it and all my doctors are singing the same tune (and it passes the rigorous medical test of “would you recommend this procedure to your brother?”). So I am not doubting them. My radiation oncologist said some borderline cases refuse treatment but that I am not a borderline case.

The upside is that this will all be over sometime this summer and I should be recovered enough to arrive at Stanford right on time to start my sabbatical.

And once I get through all this, I’m in some kind of strange permanent liminality: I’ve cheated an early death, but all of a sudden I’ve got odds placed on my quality of life 10 years down the road (or ideally, more). As I’ve said in this space before, I’m not sure what it all means, but I think there are a lot of things pointing to my 40s as a decade of not-putting-off-the-things-I-care-about.

“The Day”

Things have been quiet here, so here’s the random blog update. I’m working on a big review of the two speech amplifiers I’ve tried out but that’s gotten a little involved.

After the long winter, there is one day every year in Montreal where everyone pours out onto sidewalks, wears too little clothing and sits out on terraces to soak up the warm weather. Our friend Darin calls it “the day” and said “if you have to ask if it’s ‘the day’ then it’s not ‘the day.’” With record temperatures yesterday, it was “the day.” We spent several hours on the porch (the cat spent more), photographed the apartment for an ad on sabbaticalhomes.com (feel free to contact me if you’re looking for a posh rental in Montreal September 2010 – June 2011, but this isn’t going to be a good bargain for your friend who just finished a PhD and is moving to town to start a postdoc and wants to rent a place for $800 a month). Last night we went out to dinner to celebrate M’s completion of external beam radiation for her cancer. I wore shorts all day. It was excellent.

Dinner was its own adventure, as Ouzeri is one of our favorite restaurants but we haven’t been there since well before my first surgery. It’s simply too loud. It’s one of those places where the only soft surface is other people, which appears to have become a fashionable feature of 21st century restaurant design, at least in Montreal. And when it’s full of people it is so loud that people without speech disabilities are hard to hear. We decided to try out the speech amp there, especially once I discovered the “high” setting (a full review of my two speech amps is forthcoming). It sort of worked. Not really, though. The idea was that since there were more than just Carrie and I, I could just shut up and listen to the conversation if it got too loud. We arrived early at 6:30 and at first it was surprisingly successful. As the night went on, it got harder and harder for people to hear me. So the speech amp isn’t a panacea, but it did work fine on a bar terrace later in the evening.

More importantly, in domestic and less intense social setting, the speech amp has had one very good effect. I strain my voice less, which may or may not be the reason for its quickening recovery. I sort of sound like “me with a cold” some of the time now and may well try a venture into school next week. So that’s nice. Carrie can understand me reasonably well without the amp now if we’re just together at home and I manage to not raise my voice at all so that’s good.

In addition to the voice, side effects continue. I’m just bemused by the taste thing, since everyone says it’s temporary. But it’s still there so every meal I eat that I haven’t eaten since before the surgery is a surprise in terms of what it actually tastes like. I’m also still not fully healed from the trache, which just means changing a bandage every day for now. There’s still some swelling. My mouth, eyes and nose are dry.

But the most annoying is the fatigue. It could be all I’ve been through, or I could be hypothyroid. We just don’t know. It’s not constant. It comes and goes. I find myself calculating: “if I do this, I will need to make sure I don’t do this other thing.” If I do too much in one day, I pay for it the next (this was always the case but the threshold of “too much” was much much higher). But it’s not actually quite predictable like that. Now that I can more or less talk, that is the part I like the least.

Healthcare and Taxes

Despite its obvious shortcomings, I have never questioned that Obama’s healthcare plan is a major step forward for the United States, since it takes a positive step toward moving American healthcare from a privilege to a right.

This is exactly why I was horrified to see the new proposal by the Quebec government on provincial healthcare, which has been the subject of much local coverage and debate in the past week. The proposal institutes a new flat tax for healthcare (starting at $25, climbing to $200) as well as $25 co-pays per doctor visit up to 1% of a family’s income, which is some kind of perverse combination of flat taxes and a levy on the sick (and large families, which Quebec is elsewhere trying to encourage). This is one of those moments where it is important to remember that Quebec has no real functioning provincial conservative party, and our current “liberal” premier defected from the progressive-conservatives some time ago. This is also evident in that sales taxes, another regressive tax, will also be going up.

This proposal makes no sense to me. The point of socialized medicine is that the whole society carries the burden of the sick rather than the sick themselves. People are debating over whether the Quebec system is as efficient as it could be with the money it has, but I would defy anyone to have spent the 16-odd days I spent in Montreal General (not to mention the dozens of visits to doctors I’ve made in the past year) and not leave thinking the system could use some more money.

So here’s a counterproposal: raise marginal income tax rates on the richest Quebecers. That would raise just as much if not more money, and it would place the financial burden on the people most able to carry it. Now, before you get all huffy with me that I am some do-gooder class-traitor lefty (guilty) pointing my finger at a class of rich people to which I’ll never belong, let me establish a few facts:

the Quebec liberal government recently cut taxes, in what can only be called a spectacularly and short-sighted move. Surveys of Quebec residents showed clear popular opposition to those tax cuts.

–the top marginal tax rate in Quebec has a surprisingly low threshold for people like me who are used to US tax brackets: just under $77,000. So I am asking for higher income taxes for myself, so that my less-fortunate neighbor down the street does not have to pay $25 every time he or she goes to the doctor. The issue is not that I am sick and would be therefore disproportionately affected by this fee, although I would be. The issue is that in socialized medicine, the sick should not shoulder a disproportionate burden of the cost of healthcare. It should be spread fairly across the society. And fairness dictates those with greater means should pay more.

I have been meaning to post about my hospital stay for some time. Maybe I’ll start with financials.

The Cost of (Getting Sick Under) Socialized Medicine

I wanted to start this line of posts with the observation that there is no more nationally-specific experience than getting sick. But that’s not necessarily true. In Canada, provinces manage their own healthcare, and when I show you some pictures of where I stayed, you will understand why Michael Moore picked a nice Ontario clinic for his visit in Sicko. My illness has been a Quebec experience as much as it has been a Canadian experience.

When American friends would ask us about the Canadian system, we always said it had its quirks but that we liked it just fine. Carrie and I were both concerned about what would happen if someone got really sick and needed to be hospitalized. Fear of the unknown and all that. Also, some of the hospitals are just plain ugly. Still, when the diagnosis came down that I had thyroid cancer, I was shocked by how many Americans asked me if I’d be coming back across the border to get my healthcare. The idea seemed preposterous to me. I’m not insured to use the US system and we are talking about tens of thousands of dollars in healthcare, healthcare that I could get here for a fraction of that cost. In fact, when I joined the US thyroid cancer survivors listerv last fall, one of the things I found most emotionally overwhelming was the way in which healthcare costs and insurance figured into people’s narratives about their own experience and how their illness was managed.

I really have no Canada-specific complaints about my care, but I will leave complaints for another post. Instead, I thought I would start with the money end. We have socialized medicine here, supplemented by a private medical system. I really didn’t understand it when I first got here, and I still don’t understand a lot of it, but in addition to the provincial system, I pay for private insurance that covers some of my healthcare costs. That also means I can go to some private clinics and have tests done without paying the full cost. Though I gather that it is possible to be seen in a private clinic whether or not you have private insurance. I do know from watching my doctors that most of them have more than one office and are in different places on different days. But I won’t say more about that yet as I don’t fully grasp it yet.

Acute Costs of Cancer Treatment

So, to puncture the myth, we do not live in a socialist utopia up here. It is not actually free to get sick in Quebec, or anywhere else in Canada, though we like to think of it that way. To begin with, I have been drawing my salary while on short term disability (the unfortunately acronymed “STD,” as it is called). Up to six months at full pay, and you need a note from your doctor every month. After that, there’s long-term disability. That’s an amazing benefit of working at McGill. If I had some other kind of job, there might be real issues around lost income. Socialized medicine or no, that can mean that people can’t afford to get sick. Many people on my thyroid cancer listserv are not so fortunate. True, I lost some income on talks I wasn’t going to be able to give, but that’s just walking around money, not basic household income.

Second, there is the cost of the drugs. My drugs are relatively cheap for the most part, but the way it works in Quebec is that provincial healthcare will cover a portion of approved prescription healthcare costs if you don’t have supplemental private insurance, which almost every person with a professional-managerial job has. So i have an insurance company to whom I submit receipts, just like in the US. That said, everyone I have ever spoken to on both sides of the border says that drugs are cheaper here. I have done no research to confirm or refute that, but since I pay very little to begin with, I am not complaining.

Third, in addition to Quebec’s public system, there is a supplemental private system that caters to privileged people like me. If you are in a hurry and have good private insurance coverage (or a lot of disposable income), you can jump the queue on certain tests by going to a private clinic and paying for them. I did that for my biopsy ($200), and an early CT scan last fall (closer to $900). My insurance covered about 75% of those costs. If I hadn’t done that, I probably would have set my treatment back 2-3 months, which in my case, because thyroid cancer is a slow-growing cancer, probably wouldn’t have made a big health difference in the end, though it certainly would have messed up my sabbatical. Now, things move very quickly and I am getting all my tests for free in hospitals.

To review: so far, my total cost out of pocket for treatment for aggressive and nasty thyroid cancer is $250.

Now that I am a bona-fide cancer patient, I get all my tests and procedures for free in that I do not directly pay for them, and things have happened quite fast. Except there’s hospitalization.

Technically, hospitalization is also free, but if you go that route, they put you in a ward with 3 other people. In may case, after wandering around between recovery and ICU for a few days, I finally landed in a private room at Montreal General, which is what I wanted. I also spent a couple nights in a private room at the Jewish General in the fall after my first surgery. The private room for radioactive iodine was medically necessary and therefore not charged to me. Once again, insurance enters the picture. They cover a semi-private room (that’s with one other person). Since I selected a room with no roommates, I was charged half the cost, which is about $70 a day. That’s still a pile of money: my 17 days at Montreal General will cost just under $1100 when they get around to billing me for the part insurance didn’t cover, though our car repairs last week were close to that as well. And even if I had no private insurance, the total cost would only be about twice that at just under $2200 for 17 days’ hospitalization in a private room. And I could have had it free if I was willing to put up with roommates.

So, the total cost of my thyroid cancer thus far appears to be: about $1450 (plus lost talk income, which I’m not counting). Oh yes, I also bought 4 extra large hospital gowns through mail order, as the Jewish General gowns didn’t fit well. Montreal General had nice big gowns but they sort of hung over my trach, which wasn’t comfortable, so I was glad to have the gowns I bought. Total cost: $42 plus shipping.

But wait, there’s more. Let’s say you’re married to someone who looks after you in a devoted and exhausting fashion. Let’s say your mom comes and visits you and stays with you. Those costs are also part of getting sick. Here, things get a little fuzzier. I did not ask my mom the cost of her tickets but I’m sure they were hundreds of dollars, especially after having to switch her flight when my second surgery was delayed for a month while we explored our options. Public transit to Montreal General isn’t great and my mom’s mobility is such that we usually just drive her everywhere, so there were the options of parking for close to $20 a day — if you could find a spot — or taking a cab, which was over $20 each way (but no parking hassle). When Carrie was alone, or going by school, she did a combination of metro, walking and cabbing. Still, that’s another pile of cash. Some of this is mitigated by the fact that our leisure expenditures dropped to zero: no nights out for nice dinners and movies, no shows, no dinner parties, etc. But again, if you don’t live like us, this could add up to a lot of money quickly. On the other hand, you would probably have just taken the hit on time and found the bus that goes to and from MGH and combined that with the metro.

So I don’t know how to factor in those costs. They would have existed in the US as well, so I’m not sure that the comparison even matters, but clearly our privilege played a role in my experience of my illness and Carrie’s as well. We’re also lucky that my long hospital stay coincided with “study break” (=McGillspeak for “spring break” except it’s in February so spring is a distant fantasy), as there is no “care for your family leave” at McGill.

Therefore, I’ll say the really significant figure so far is $1500 and all of it was optional and the only impact on my end outcome was morale and convenience. These are not negligible at all, and totally worth $1500 to me. Of course, there may be hidden costs to external beam radiation. We shall see. In any event, on top of my “optional” services listed above, I got the following:

3 surgeries
second opinions
supervision by a team of doctors
daily visits from doctors while in the hospital
22 total days in the hospital
so many x-rays, blood tests and scans that I can’t count (including both a PET scan and a whole body scan)
radioactive iodine
thyrogen
a whole array of medications for pain, hormone levels and calcium
weekly speech therapy
access to the Hope & Cope centre (including a personal trainer)
and a surgeon and “team leader” who actually returns my emails
–I am sure I am forgetting some things

So there are some financials for you. Judge for yourself whether this system is superior to that of the United States or not.

Healthcare Costs as a Portion of Middle Class Income: One Case Study

The assumption is that Canadians pay for socialized medicine in higher taxes, which is probably true in some absolute sense but is also a meaningless statement. I can’t speak for others since I haven’t the economic data, but let’s use me as an example of someone who has lived under both the US and the Quebec systems. Every year I have enough withholding to warrant an income tax return after I contribute to my RRSP (=”IRA” for Americans), but leaving that aside, after taxes and fees were removed from my last paycheck, I took home just under 56% of my gross pay.(1) When I worked at the University of Pittsburgh, my fees for healthcare were much higher, I was paying local, state and federal income taxes and various fees, I took home just under 57% of my gross.(2)

These figures are meaningful because they are an aggregate of the costs of buying health insurance and income tax withholding (mixed in with some other benefits such as retirement, life insurance, old age security, and a few others which are themselves much smaller fractions of the amount withheld from my regular paycheck).

In other words, on a month to month basis, I am paying a roughly equivalent amount of money out of pocket for healthcare here, except that it is considered a right and not a privilege. Now it’s true that some Quebec emergency rooms are overcrowded (news flash: so are some American emergency rooms), that the hospital infrastructure is decaying and some people have to wait for some services an inordinately long time. The system is not perfect and could certainly improve in many ways. At the same time, it would be wrong to say that we are paying more for less, as although privileged people like me may pay a little more, nobody in Quebec will be dropped from insurance for being sick or go broke because of healthcare costs. And I pay less for prescription drugs, have no copays (for now), and can get in to see all sorts of specialists much faster than I could under the UPMC system, which was considered to be “excellent” healthcare in the US and was a point that the University of Pittsburgh used in their recruitment of new faculty.

Notes;

1. McGill employees know that that 57% is not actually a fair number, since certain provincial fees and taxes are paid off over the course of the year, and for the last few months of the year, you take home a higher percentage of your gross–in December, I has bringing home over 60% of my gross.

2. Again this isn’t the whole story. In the US I could deduct mortgage interest, but had to pay water, sewer, garbage collection so on. Here, we’ve got much higher sales taxes and can’t deduct mortgage interest (but the RRSP deduction makes a bigger impact on your return). So I probably do pay more taxes when you add it all up, but not by as much as you’d think given all the complaining people do around here.

News + Spicy Foods Question

So, it seems that my voice is improving now by leaps and bounds. I attended seminar yesterday for the first time since the surgery and it was fun. As predicted, I was totally wiped out in the evening but that was hypothyroidism and not anything voice-related. Also, my friend Kembrew McLeod is giving a talk on telelphones and music at the EMP conference and asked if he could call and record me reading a couple lines from my mp3 manuscript about phones. I counterproposed that I record myself and run it through a phone filter (I actually gave him a choice of 3 different ones from the bizarre and amusing “Speakerphone” plugin). It turns out that was a good idea. It was a little more trouble than I expected but it was interesting to try and see how difficult it would be. I discovered that I don’t have the vocal power to read my usual long sentences and so had to cut them up. Also, I needed a few takes but “nailed it” at the end (by “nailing it,” I mean my voice didn’t crack like a 13 year old after a smoking binge). Since the goal here is to be able to deliver lectures and given academic talks again, it’s good to have a little test, even if my voice will be temporarily decimated one more time.

In more important news, I got a call from my endo yesterday with test results. The blood test says my tumor indicator is very low and that as of March 12th I was “profoundly hypothyroid,” which is two kinds of good news. The tumor marker means that the radioactive iodine “worked” and that I don’t need another round of it right now. He agreed that my continued fatigue is probably just hypothyroidism and not something else (I don’t know why I’m so relieved by a diagnosis but I am). I will still have to wait another month to do anything as my synthroid dose was too recently changed to change again. The whole body scan showed nothing as well, which is also great news. The report indicated some liver uptake, which I guess is normal, but it’s small enough that they can’t see it on their own equipment. I’m having a liver ultrasound as a followup just to be safe, but he seemed totally unconcerned.

Mostly I trust my doctors, as they have not steered me wrong and have been very careful and doting in their treatment. But I am skeptical on one front. I asked about my continued taste bud issues. My endo also told me to avoid spicy food and that that would help my taste buds. I must confess that I am suspicious that this is some anglo thing about blandness. I got the same recommendation regarding my vocal cord and M and I have talked about whether this spicy thing is a bit of a colonial myth. Large swaths of humanity each heavily spiced food every day. My understanding is that capsicum actually stimulates the pain receptors on your tongue and not your taste buds at all. Is there really sound medical evidence for avoiding spice to encourage taste bud recovery post RAI (or any other trauma)?

I did a quick google search and got nothing of significance, and pubmed has no hits on “taste buds” and “spicy foods” together as search terms (ditto for “vocal cords” and “spicy foods”). Of the 150 hits on spicy foods, a 2007 study of reflux sufferers concluded that fat was a much bigger issue than spice in causing reflux (note: it’s only one study, I’m not saying it’s proven fact). A review article offered a similar conclusion. No studies in my 150 hits showed any causal relationship between spicy food and acid reflux, vocal cord trauma or issues with taste buds. Now, a lot of commercial spicy food is also high in fat. That delicious curry down the street may be full of 35%mf cream and high fat content does seem to be an issue for reflux, which is bad for vocal cords.

So, where’s the evidence?

My pubmed search also turned up this hilariously titled article:

“Optimizing the sensory characteristics and acceptance of canned cat food: use of a human taste panel.”

I wonder what they had to pay the test subjects for that one.

Generic Update in Lieu of Something More Clever

I’m not sure why my big review is taking so long but it is. In the meantime, a more mundane general update.

My voice continues to improve. I still don’t have the vocal power I once did and I noted that when visited by a friend who has attended lots of rock concerts that he said “what?” to me more than usual, but in normal speech I seem to do okay without the voice amp. I snuck into campus again Thursday for my last seminar to see the rest of the student presentations and have taken a few student meetings this week. It is nice to have some sense of normality back even if it is only temporary.

Speaking of normal, Friday night I took Carrie out for a pre-birthday dinner at a pupuseria. I dipped a chip into the salsa expecting to taste only the slight sweetness of the tomatoes and a bit of spicy on my tongue. Instead I was hit with a wave of sour and salty. “This salsa is A-MAY-ZING,” I said to Carrie. But of course it wasn’t. I was just tasting sour and salty for the first time in weeks. I’m not sure why it happened that way. A query to my survivor listserv earlier in the week produced responses from people who had a variety of stories. For some, the taste buds just turned back on. My speech therapist suggested Biotene mouthwash–which could be branded “The Pavlov of Mouthwashes”–and I have been using it religiously.

This is especially good because external beam patients with whom I have corresponded suggested that I should make a point of enjoying foods that I enjoy because a) it may be awhile and b) some of my taste may never come back after the next round. Morbid sounding but sound advice. Everyone I’ve told has asked what my favorite food is. The truth is that I have no idea. I am pleased, though, as I joked that my taste would come back the day before EBR, and now I’ve got a few weeks to enjoy it.

On the other hand, the fact that my voice is improving means that other symptoms are starting to annoy me more. Most notable is the fatigue, which I did not have this long after the first surgery. Granted, I didn’t spend a bunch of time in the hospital and I didn’t have radioactive iodine, but I suspect this is garden-variety hypothyroidism. I am trying to strike a balance between looking after it and ignoring it, as I don’t want to spend my whole life on the couch complaining about being hypothyroid. So some days I take naps and some days I try and “power through.” I don’t find that I am sleeping a lot longer at night. I’m still at about 7.5 hours per night as usual. Last night some friends visited and I didn’t feel good at all. But my not feeling good was outweighed by my desire to see my friends. In a way I take this as a good sign. My voice is healed enough that I am more annoyed by something else. I don’t think the fatigue is worse than it was*, I just think it is more apparent as my “worst” symptom now.

In addition to fatigue, I notice some other symptoms. I’m moody. Hormonal, even. I don’t like it. I even lost my temper at someone on the phone Monday and while I believe I was “in the right” on the substance of the matter, it still isn’t how I want to behave toward people regardless of whether I am right about something (Carrie, the cat and close friends and coworkers have thus far escaped my wrath and I’d like to keep it that way). I also find that I feel an aching weakness in my hands and forearms, and am somewhat clumsy (these somehow feel like “the same” symptom). And when the temperature dropped back down last week, one morning Carrie woke up to find me wearing two sweatshirts, two pairs of socks and a stocking cap indoors. And she wasn’t particularly cold at all. I notice it takes me longer to warm up than other people, so the hat actually goes on indoors kind of regularly or stays on for awhile when I come in from the outdoors. Carrie calls it my new look. It’s funny. I used to complain about always running hot, but running cold is its own kind of a drag if you can’t get warm. Now I know how the other half lives.

I have two CT scans in the next two weeks–the second is in preparation for my Encounter With The Beam, which is tentatively scheduled to begin the 2nd week of May, though that could change. They were waiting for my trache to fully heal. I don’t know what’s happening on the inside, but on the outside the hole is closed and I’m no longer wearing a bandage, which is great news for my skin around the hole.

That’s it for now. More clever thoughts tomorrow or the next day when I have some.

——

* All those ecstatic posts around March 11th? That was definitely the ‘roids talking. When I asked my Endo about whether the reason I was feeling bad now and good in March had anything to do with them, he just laughed and said “people love the steroids.” Oh well, I guess that was my experiment with uppers if you’re not counting caffeine.

While waiting for EBR. . .work!

As it did in January, blogging has slowed down as life has sped back up, which all things considered is a good thing. My voice is good enough that I only use the speech amp in large groups and particularly loud settings. I am tired pretty much all the time and get downright, face-on-the-floor exhausted at the end of the night, but there is a point of diminishing returns with being hypothyroid, since sleep doesn’t work quite like it should. I can feel like crap at home by myself or I can go out in the world and be around people.

So I’ve been back at work. I am not as energetic and active as I will be when my hormones are right but I am enjoying seeing students and grading papers. And there’s nothing else to do except wait for external beam radiation to start, which is a maddening prospect to consider. Sitting at home is not an option. There were lots of tests this week as well, but I will get on to that topic in my next post.

The last two days featured a very successful pair of conferences in the department, ending with a 4-hour AHCS faculty symposium. I gave the opening remarks as chair, and let me say that my first post-paralysis foray into public speaking was a little difficult. I’ve spoken so much in public over the past 11 years that I am still used to projecting, which is physically impossible. I needed to use the mic more, which I didn’t properly do. So I will be working on my mic technique next time I give a talk. But it was a good experiment to see what I could manage and “opening remarks” are over within 5 minutes, so it long enough to see what would happen. Two colleagues who share my penchant for inappropriate jokes wanted to yell “speak up, I can’t hear you!”. They restrained themselves lest someone get the wrong idea, which was too bad since I had the perfect comeback — tapping my neck where my vocal nerve should be and saying “is this thing on?”

Anyway, the students did an amazing job organizing their conference, and the faculty symposium was a real treat as well. There is this idea that academic departments exist as intellectual communities, yet they rarely do. I am fortunate to work in a department where we actually get along and yet like faculty in most departments, we spend most of our time talking about bureaucratic matters or gossip. So it was nice to have a public occasion to interact as intellectuals. The evening ended for me with a spontaneous faculty dinner with the 8 of us who stuck around for the whole reception (along with a regularly-appearing special guest star at dept events and on search committees), which is also unique. I can’t remember the last time I dined with eight colleagues from my own department. There was a student-organized party and reception, but I was simply too tired to go. I was too tired to even walk two blocks to replenish our supply of my favorite onion bagels. We caught a cab and headed home.

Shaving Issues–Suggestions Needed

More news tomorrow but I am currently pondering shaving off my beard.

The thing is, if I go this route, I’ve been instructed to use an electric razor as it’s bad to cut yourself while undergoing EBR. I have been doing an informal survey of men and can’t seem to find any who use electric shavers of any kind. The responses I get from men I’ve talked to range from “no I don’t use one” to “electric razors are one of the most successful hoaxes perpetrated against men over the last 50 years.” If anyone out there can recommend a decent one (comfort is more of a concern than price), I’d be grateful. I was last clean shaven for about a month at age 19.

Carrie has never seen me without a beard.

The issue is that you need your facial hair or lack thereof to be roughly the same every day for six weeks during the EBR treatment. This sounds like not that big a deal–I could just trim my beard every two days. But it is quite likely all the hair below my jawbone will fall out. As one person on the US survivors list explained to me:

I lost all hair below the jaw line to upper chest. And that hair hasn’t come back and I had EBR aug-sept 2007.

Another wrote:

I imagine your beard would look pretty funny while doing EBR, and until it grew back it will be as smooth as a baby’s butt.

Comfort is definitely a bigger issue than cost.

The Week of Scans

Last week I had medical appointments: a CT scan of my chest to follow up on that dot they thought was nothing; an ultrasound of my liver to follow up on that light they thought was nothing; and a prep for my external beam radiation (EBR). The first two were uneventful and I expect no momentous news from either of them, so I will dwell on the third, which occurred Friday morning.

I don’t know why, but I went in expecting a chance to talk with the doctor one more time, perhaps because denial and fear of protracted pain and muteness dictate another round of “is this really necessary?” But I am clearly way past that point. There was no doctor, just radiation technicians, and the main event was the design of a mask for me to wear and getting a good mapping of my head.

The point of EBR is to shoot tiny beams of radiation in exactly the same place every day for a few weeks to kill off any remaining cancer cells and prevent them from coming back. To accomplish this, the patient must be in the exact same position each day, and the radiation “guns” must be in the same position each day. To accomplish this, they make a mask which they can then fasten to the table. It holds your head exactly in place so that you can’t move and the beams of radiation go exactly where they are supposed to. The mask looks like something straight out of a horror film.

Making it was a strange sensation. First a mouthpiece is made. Then you wear the mouthpiece and they pull a warm synthetic material over your face very tight, with only a hole for the mouth. This is followed by a lot of pressing and pulling, and then a cool sensation as the substance hardens into the mask. Then they take it off and cut out the eye holes with a very loud drill, and finish the job by testing it out, which includes screwing your head down to the table with it.

The blue ring is where they attach it to the table. I like that my name is on it, just like a jacket in kindergarten.

I know the claustrophobes among you are already freaking out at the close quarters and lack of movement. I want to suggest you have it all wrong. I want the thing to be tight and to be totally restrained. This is not because of some bizarre S&M proclivity on my part but because my fear is not of small spaces but of something I call false accuracy.

My favorite example of false accuracy is determination of the first down in American football. They have two officials holding chains (the “chain crew”) to see whether the ball is far enough at the end of a play for a first down. So it appears very accurate.

Except that the ball was placed there by a referee who more or less had to eyeball where the ball landed at the end of the play, especially if the player carrying the ball ended the play at the bottom of a pile. It looks accurate, but the accuracy comes on top of guesswork. If you prefer an academic reference, try Donald MacKenzie’s history of nuclear missile guidance systems.

All this is to try and explain the level of concern that filled me when one of the techs said to me “you’ll need to make sure your beard is the same length every day.” In theory, that’s not a problem. Except nobody told me about this ahead of time (she was apologetic–I guess the doctors are supposed to say something), so I arrived with my beard at some random length which would be impossible to maintain. My two options are, as I mentioned in the previous post, to shave it all off and shave every couple days with an electric razor, or to crop it very short every couple days. You would think after having a beard for 20 years I’d be dedicated to keeping it, but since apparently half of it will fall out during the treatment, I’m not sure this is the best option. In any event, the blog query has gotten no answers and the Facebook query has gotten one suggestion and a whole lot of “use a razor!” replies. While a very interesting retort to all those electric razor ads they run during football games, the suggestions are irrelevant to my situation, since I won’t be developing 20 years worth of shaving skills in the next two weeks and I was expressly instructed not to use a razor because it would be very bad to cut myself.

Anyway, that will have to be resolved by Tuesday, when I return to get double-checked. I was heartened to know that I would have to come back with my facial hair “as it would be” so that they could be certain of their accuracy.

The other thing the tech said to me was “try not to lose any weight.” Besides this being the first time in my entire life than any medical professional has uttered that sequence of words to me (unless you remove the words “not” and “any”) it is very likely impossible. Most people get on a liquid diet very quickly, some even go to a PEG tube, and many EBR survivors tell me they lost a lot of weight. After inquiring about this on the US survivors’ list, it appears they check every week at least, and there are stents and things they can give you (or just make a new mask) so that you’re in the same place every time.

While I found the whole thing interesting and curious, and shot the photos of the masking thinking “hahahaha, this will be great to put on my blog,” a few minutes later as I was exiting the hospital, a creeping dread befell me. I was due at school in 90 minutes, but I wanted to be alone. I really wanted to be alone. For the first time in quite awhile. So I went to lunch, ordered a salad with croutons (two things I will unlikely be able to manage as the therapy goes on), and read a chunk of Music and Cyberliberties in an effort to get my head in a good space for Friday’s faculty symposium.

Shaved, Masked

Okay, first of all I went for it and shaved. It took 45 minutes on Sunday night, probably closer to an hour to get the whole beard off and to actually look clean shaven, no doubt because I used an electric and I don’t know what I’m doing. Yes I cut myself in a few places. I’ll get better with practice, I imagine.

The results are less dramatic than I expected. I look younger. A mole I last saw in September 1989 (yes kids, that’s before the fall of the Berlin Wall) is no longer dark, but is the same color as the rest of my skin. The swelling below my chin post surgery (perhaps lymphedema? who knows?) is a little more obvious. It’s weird to feel my skin exposed to air, but I think I will grow to like it. Carrie was worried she wouldn’t like the clean shaven look but I think she’s coming around to it.

I did it to “commit to the process” as they say. I’d rather look clean shaven than hold onto my beard for some “I don’t want cancer to change me” reason and wind up with a crappy looking beard with a bunch of holes in it. I stopped shaving after high school (with a brief break in 1st year of university) because I had sensitive skin, cut myself a lot, and figured a once-a-month trim was a lot easier to manage. But the beard brought its own skin issues, so we shall see.

——

Today, I went back with my shaven face to try the mask again. Did it fit right? Apparently. But I don’t really know. You don’t normally wear the mask for very long, but I got a special treatment. They needed to do a CT scan to plot a treatment plan, but the CT machine was a bit wonky. The result is that I sat on the platform, in the mask, screwed to the table and sitting on my hands for quite awhile. A 20 minute appointment stretched out to over an hour. I’m glad the technicians were thorough, but I can say that being immobilized like that gets less comfortable after the first 15 minutes or so. Eventually they came and took off the mask while they had someone troubleshoot the machine.

Looks like my “test run” will be midweek next week.

New Thyroid Cancer Canada Website

Thyroid Cancer Canada just launched their new website: http://www.thyroidcancercanada.org. I definitely don’t fit their main demographic but have found them to be an incredibly useful resource throughout my experience. Rita Banach their president, has worked tirelessly to update and modernize their web presence. Thyroid cancer is still underrepresented in the broader cultural discourse around cancer, and when it is, it is generally as “the good cancer,” which as you know, I hate. TCC has done lots to raise awareness and provide resources to people going through it, from all walks of life.

I’ve added links to them, and to the US-based Thyroid Cancer Survivors Association in my right panel.

If you’re looking for a place to donate some money, I would certainly recommend both organizations.

Promotional Photo for Saw XXIV + Holding Pattern

Neal Thomas graciously offered to photoshop the pictures of the EBR mask onto my faculty photo. The results are impressive, though I am as yet undecided as to whether this should replace my official faculty photo on the McGill site:

Is it more lucha libre or horror film? Please don’t answer that.

Meanwhile, I appear to be in a holding pattern. The original plan was to start EBR next week. But before that can happen, I need an appointment for a dress rehearsal. They keep promising to call me, but as of yet I have not been given a date. So it’s wait and see and make a lot of plans in tentative form. So it looks like EBR may not begin next Monday. We shall see.

I am confirmed for an appointment Friday to see my endo and get my synthroid raised, and that should be a happy occasion.

In other news, Carrie and I headed off to Stowe, Vermont for a couple days. We were so totally overdue for a vacation, we decided a small one was better than none. I’ve always preferred massive, soulless corporate hotels to “quirky” bed and breakfast joints, and we found a nice big resort that was also empty because it’s the off-season. Really empty. Carrie kept making jokes about The Shining although there were other guests there and we were not in danger at any time. We took a few treatments at the spa. I had my first-ever facial–called a “gentleman’s facial” of course so no man need fear for his masculinity. Though as far as I can tell I have exactly the same treatment as Carrie so I’m pretty sure that it’s a gentleman’s facial because I’m a man. I can’t say I’ll be having a second. It’s been an intense week or so for my face. The other treatments were pretty good, if overpriced. (But then, it is a spa in a resort hotel, so what do you expect?) I did find myself wondering what spa culture must have been like prior to the new age movement, though. It seems so influenced by that.

Anyway, we got into vacation mode in record time (we usually take a day or so to settle down into it), which is good because we only had a little over 48 hours. Left me wanting more, but that’s always the case.

Good News/Good News/Bad News

Yesterday was a big medical day.

Good News 1:

First up was an appointment with my endo, who upped my synthroid dose quite significantly–almost doubling it. Let’s hope that handles the hypothyroidism. I expected that. The bigger shock was that he told me my parathyroids were working. My sense was that they were damaged during the second surgery and I would be on calcium pills for the rest of my life. Which was a bummer because I hate the calcium pills. They come in a size appropriate for horses and elephants, and they upset my stomach at inconvenient times (like the middle of the night). So no more calcium pills. Though I guess he could always be wrong. If my lips are numb, I’ll know what’s up.

Good news 2/Bad News (it’s sort of both):

Next up was the “simulation” which is the last step before they start external beam radiation.

And now for a gratuitous Jean Baudrillard quote:

“Medicine and the army […] are favored terrains of simulation.”
– (Simulacra and Simulation)

(We now return you to your blog post)

I went into a room with a bunch of masks on a shelf (sort of like a costume shop, but different). Some looked a bit like mine. Others were mesh (I suspect that’s what the brain cancer people wear). They did a bunch of tests and x-rays. There was much talk about whether the mask was tight enough. So my anxieties are not totally off base. Then they drew some marks on my body and painted over them. it’s not quite tattooing, as I’m sure the stuff will eventually come off but right now it looks like someone painted a trident on my chest.

Now the world will think–erroneously–that I have a thing for Poseidon.

The EBR is supposed to start next week Tuesday afternoon, but I will get a call Monday to confirm that because they are not sure whether to adjust, use or remake my mask. So there might be a delay. I’d rather they take their time and get it right than rush into things. But the real bummer of it is that after Tuesday, they’ve scheduled me for 7:45am every day for six weeks. It was late on Friday so the scheduler had already left, but the nurse got a few of my times changed. I’d asked for an afternoon time–any time. So I will try a range of strategies starting with reason and appeals to human decency to get the time changed to something approaching humane. Failing that, there is always begging. I don’t care if it’s a different time every day, I just don’t want to have to get up before 7am five days a week for six weeks in the summer. If they tell me the 32 people scheduled after me each day have a more important medical reason to have those slots than I do, I am willing to go with it, but somehow I kind of think that’s not the case.

I also met the dietician, which was interesting since her instructions varied a bit from the written instructions I’d gotten.

Well, that’s a relief

This morning, when I had planned to be writing up the AHCS strategic plan, I got a call from Jewish General asking if I could come in so they could adjust my mask. I was delighted to oblige. It turns out that whatever the mask is made of, you can mold it some by making it hot and then cooling it off again. So I lay down on the table, they heated it up, and then I got a hot mask pressed down onto my face. They followed this with cold towels. It might have looked a little like a cross between a spa treatment and waterboarding, but it was fine. The result was a much tighter fit, and I’m delighted to learn that they can do this again should I lose weight–and not just a beard. Though again I was treated to the spectacle of a medical professional advising me not to lose too much weight. I won’t get used to that.

The re-sizing was followed by a trip back into the testing room, where they did another simulation on me. For just a moment, as the x-ray machine passed over my face with the light turned off, I could see my reflection. There I was, strapped to the table, looking out from inside the mask, with my hair in pigtails hanging down either side of the table (Carrie insisted that I be sure to include the pigtails detail). Then the light turned on. I think it’s probably better that way, but I would definitely say that the look is a little more “executioner” and a little less “horror flick” or “lucha libre” than I had originally thought. There was much talking and adjusting, and drawing on the mask and on my body. It took quite awhile but I wasn’t uncomfortable, and the mask sure did fit nicely.

When it ended, I almost got to take a picture of the wall of masks, which is really impressive. I did confirm that the mesh ones were for head and brain patients, and there are also these mysterious white ones. I’m wearing yellow, as you know. But there is, alas, no picture: they changed their mind because of privacy concerns. I keep forgetting that it’s actually kind of weird to be having a completely public bout of cancer.

If that wasn’t enough, a saintly woman named Bridget changed my treatment schedule for me. I still have 7:45 W and Th this week, but otherwise all the times are eminently humane. After wandering around the schedule for a couple weeks, I will settle in at 12:30, which breaks up the day but is well-situated for a trip to the Hope and Cope gym beforehand and if necessary a nap afterward when the radiation fatigue sets in.

I even ran into my radiation oncologist, who doesn’t think there will be any major pain for at least a couple weeks, if not longer. I like the sound of that.

More news after I actually go through one of these tomorrow.

Quick Update

I had the first treatment today. It was uneventful and painless. It took a little longer than 15 minutes since they were getting used to me and adjusting my body on the bed. The mask was nice and tight. I was hoping there would be a laser or light sabre or something spectacular but I couldn’t even figure out which part of the machine was taking pictures and which part was shooting radiation into me. The tech had to explain it to me after. More tomorrow, since I’ve got an early-morning wakeup.

28

There are two running counts on our chalkboard at home. The first is a counter of actual days until my term as department chair is up (31 May is the last day of my term). That number is at 19, though the chairing is pretty light in May and I’ve had lots of help from colleagues. Still, I’m going to feel like I can really bookend an accomplishment (is that a metaphor?) when that number hits 0.

The number in the subject heading of this post is the number of external beam radiation treatments I have left. I hope it’s not approximate but I don’t really know. I was told I’ve ben scheduled for 30 treatments, so today would have been #2/29. The measure is in treatments, not days. So weekends and holidays at the Jewish General (including the next two Mondays) don’t get me any closer to 0. Perhaps it’s not healthy to count down like this, perhaps it is. I kind of like it. This is my last course of thyroid cancer treatment for the near term anyway, and the final obstacle to whatever approximation of a full recovery I can make.

I learned more about the machine today. There are these different parts that swirl around you. The beam shoots at me as it’s moving around, so the noises that it makes while it is sitting there looking at me are its “getting ready” noises. The staff were also faster at moving me around, so I was in and out much quicker.

The whole thing definitely feels a bit “I’m living in the future” science-fiction-y. The machine is very, well, machine-like and there is a small fleet of technicians (okay 3) whose official job is to attend to my treatment. But really their relationship is with the machine, and I’m just an intermediary. Of course, from my perspective it’s the opposite, since it’s me and the machine that get to spend 15 minutes of quality time together, utterly shut off from the rest of the world.

As M told me, there is something different about radiation oncology. Everyone is so nice and friendly. The spaces are beautiful. When I first visited endocrinology at the Jewish I joked that someone had redecorated it after a visit to Ikea. If that’s the case, then radiation oncology is more like Zone (a higher-end modern housewares store, for the non-Montrealers who don’t get the joke). So of course I call endocrinology Ikea and radiation oncology Zone, because in classic American fashion I like to give everything nicknames. It makes sense, though. The treatment is slowly debilitating, so they want to make the space as welcoming as possible so you keep coming even when it gets rough. I joked at one point that the waiting room was nice enough to make it worth the side-effects. Except that patients in EBR go into a secret, super-special waiting room that’s not as sunny. They call it the “green room” because there is green glass on the outside, but the broader cultural resonance is also pretty thick.

Anyway, the EBR room is gigantic and separated from the rest of the hospital by a massive concrete door (with the obligatory “warning–radiation”) sign and thick walls. The machine itself cost more than our condo, and can do these sort of pirouettes with its different parts during the treatment. I started to discern a pattern of movements. Once I decode it, I will know what marks the beginning, middle and end of my treatment, assuming they do the same thing each time.

Today I also had a getting-to-know-you meeting with a resident, but not much news was to be had on that front, as he hadn’t really looked over my treatment program yet and I don’t have any symptoms yet. He did tell me to try and avoid using creams and lotions until I need them as they actually adjust where the maximum impact of the radiation is–too thick a layer of lotion on your skin and the radiation effectively burns closer to the surface. Interesting theory and the opposite of what I read on the advanced ThyCa listserv, so I don’t really know what to think.

I keep getting these burning feelings on my skin and then I remember; that’s razorburn from the electric shaver. Duh. I haven’t had that in over 20 years. I’m a little hoarse now and then and maybe my mouth is a little dry. Or maybe I’m just noticing how things always are but anticipating their transformation.

Anyway, the numbers/how many treatments I have left in the title seem like a good conceit for the time being, so I’ll keep with it.

Tomorrow I’m back at 7:45, then I’ve got more reasonable times.

Endnote: I have picked up this odd habit of dropping the first person pronoun in my writing. I typed “Haven’t had that” instead of “I haven’t had that” and had to go back and fix it. I keep doing this. It’s probably just hypothyroid brain fog but it’s fun to think there’s a more profound existential explanation.

Cancer Crawl, 12 May 2010

This went out to my email distribution list last night. Not much of it is new news, except maybe the part at the end where I talk about my feelings, which as usual are somewhat inappropriate to the situation. But hey, they’re mine and I’m keeping them.

Dear Friends Near and Far:

Here’s your latest Jonathan Sterne cancer news. I’m Jonathan, your host and subject.

HEADLINES: This week, I started external beam radiation. I’ll have 30 daily treatments over 6.5 weeks. The treatment is outpatient and I’ll be able to more or less lead a normal life for part of it. It’ll be fine at first and then will get pretty unpleasant, but most of the really nasty stuff is temporary. In the meantime, my voice has sort of come back (until EBR steals it again), and I’m still hypothyroid but getting closer to normal. I’ve been working and seeing people. After 20 years of having a beard, I shaved it off since it was going to fall off anyway. Carrie and I are looking forward to sabbaticals together in the fall. A picture of my radiation mask photoshopped onto my faculty photo is available here: http://superbon.net/?p=1286 (note that the news in the accompanying post is out of date).

WHAT I WANT: Lots of people are asking what I want. I got so much stuff from the first couple rounds of treatment that I don’t need any more stuff. I am still behind in my reading, watching and playing from that bounty. I also don’t need food brought over since at some point eating will be difficult and tasting will be strange, and I don’t really know when that will be. So mostly, for the locals, I would say the thing you can offer me is company. For now, I want to keep up a regular but not-too-brisk social life while I’m going through this. What that will consist of will depend on where I’m at in the treatment and whether the World Cup has begun. So if you’re around, drop me a line. If things get really ugly, I’ll make Carrie social coordinator again, though she always prefers it when I’m doing it.

———-

THE LONG VERSION including gory details:

Since your last update, lots and nothing has happened, depending on how you look at it. Until this week, I’ve had no new treatments. But that has allowed time for actual recovery. My voice sounds better than it has sounded at any time since my first surgery. I still won’t be lecturing without a mic, and am still sometimes misheard in loud environments, but my voice is sort of like a normal person’s that cracks once in awhile. All of the side effects from my radioactive iodine are gone, and I can taste again. Miraculously, my parathyroids are now working which means that after all I won’t be on calcium pills the rest of my life. I am still “hormonal” and they are experimenting to get the right synthroid dose. I have been hypothyroid for a couple months now and it’s not particularly fun. My main symptoms at this point are related to that. I also had a bunch of tests and scans since March and if they were done a year from now, I think I’d be pronounced in remission. So now we just wait until next year and do it again.

I have been officially back at work for a few weeks. My capacity to get stuff done is still diminished by the fog and exhaustion that accompany hypothyroidism, but it’s really nice to be around people and I am keeping it to a regular full-time job instead of all the extra hours I usually log. I have been keeping a semi-regular social schedule as well, and Carrie and I escaped to Vermont for a 72-hour mini-vacation.

So now that I appear to be on the road to recovery, I am taking a final detour: external beam radiation. Over the next six-odd weeks I will have 30 daily treatments of external beam radiation to my neck. It’s 5 days a week, minus holidays, so I will go into a 7th week. The treatments themselves are a little weird but painless. I go into a room, put on a custom-fit mask and get attached to a table. Everything is aligned just so: they have drawn a bunch of dotted lines and crosses on my body for aligning the radiation machine. It looks like I have some lame tattoos. The one on my chest looks a little like a fork or a trident, the one on my shoulder looks like a crucifix and a dotted line. Very heavy metal.

Once the machine is set up, everyone runs out and some radiation beams are aimed at very precise places on my face. The whole thing takes 15 minutes, plus commute. On Wednesdays I see the doctor and on Thursdays or Fridays the dietician. Beforehand, I hope to get into the habit of visiting the gym at the Hope and Cope. So I’ll have a little routine in the middle of my day. The problem is that the radiation effects are cumulative. I’ll start by offering a lightly edited version of what I wrote in my March 28th email since it’s the same information:

My voice will probably get worse again. There will be “sunburn-like” pain both on my skin and inside my throat. I will be coughing up all sorts of stuff. 2-3 weeks in I will probably find it too difficult to swallow solid food, though some patients have managed to do so. They did assure me I wouldn’t need a port or feeding tube—I’d just be on some kind of liquid diet. My taste will be affected again. Radiation fatigue also sets in after awhile. All of this will eventually go away some weeks after the treatment and they will give me various pain medications.

Long term side effects range from the comical to the abstractly scary. I will have decreased saliva production, which means drinking lots of water and more dentist visits; but I like my dentist. I will likely be unable to grow part of my beard on my neck.

The scary permanent side-effect is that the irradiated area becomes much more difficult to operate on and heals much more slowly (though this appears to still be in the range of morbidity, not mortality). The point of EBR is to greatly reduce the chances that another operation will be needed, so there’s some yin and yang to it.

I’m not exactly excited, but I’m eager to get it over with. I have a feeling that this treatment is somehow different. It is exceptional: even the staff in my surgeon’s office don’t know much about EBR because it’s so rare for thyroid cancer patients. It also occupies an ambiguous status between curative and preventative. People have asked if I am afraid, but fear isn’t exactly the right word. I woke up Tuesday morning excited to begin so that it might end. But that feeling is mixed with something more like dread. I know what it’s like to be in pain (though this will be a new, different pain), to have my senses dulled, to lose my voice, to be “off” food and to generally feel debilitated. I am certain I won’t like it and that there will be a period of a few weeks where I am really down and out. But it will happen gradually, at least, and I’ve certainly had enough practice at this sort of thing at this point.

To use a term sometimes applied to chemo patients, I have “committed to the process.” I shaved off my beard, since large clumps of it will likely fall out, and I may not get them back. I actually kind of like being clean shaven, though I don’t like shaving. Other EBR survivors told me to eat my favorite foods in case they never taste the same again. That’s kind of hard for me to figure out, since there are so many contenders. But I’ve tried to take the advice without going too nuts since it’s very easy to gain weight while hypothyroid. There will also be some milestones unrelated to being a cancer patient that I can celebrate during the treatment: the official end of my 3-year term as chair on May 31st, Carrie’s tenure letter (which should arrive by sometime in early June) and our 20th anniversary.

Given the good outcomes on my tests, this is the last stretch of cancer treatment for now, and it has a definite end-date. That is perhaps my favorite part of the whole thing, even if I can’t quite pinpoint it. My current estimate is June 22nd for the last treatment, but I can’t be certain since the radiation department does like their holidays. After that, I will recover and then get on with my life. We are already making plans: we have a rental agreement for a place in Mountain View (near Palo Alto) and will be at Stanford as of September 1st for our sabbaticals (and our place here is up for sublet for the same period, though we don’t yet have a tenant). If I am very lucky, we be in Rio de Janeiro for my 40th birthday in early August. If I am too debilitated, we’ll stay here and enjoy it with friends.

I am not yet certain whether I will send another update to this list, as my fate is more or less laid out. This is either the ultimate or penultimate Cancer Crawl for now.

As always, much more detail, along with illustrations, may be found at http://superbon.net ; and continued cancer updates for the curious can be found via this link (if you want to skip the rest of the blog): http://superbon.net/?cat=74 .

And as always, thank you for your support and for reading. I can’t really recommend cancer. And I promise never to be one of those “cancer is the best thing that ever happened to me” people. But if I had to get cancer (and apparently I did), it has been positively liberating to conduct this illness in public, and to not worry about who knows what, to be able to write everyone with the same details so I don’t have to rehash them too much, and to be free of the little social melodramas that sometimes accompany major illness. For that, I thank you all again. I’ve gotten lots of nice gifts over the past 8 months, but the best gift has always been and will always be friendship and companionship.

Sincerely,
–Jonathan

26

Announcing an exciting new feature of cancer blogging: symptom Haikus! Since at the beginning of EBR I won’t be able to tell whether most symptoms are actual side effects or just things happening in my body, and they come on slowly and cumulatively, the minimalist form of the Haiku seems appropriate. It also gives form to “hmm, my neck itches. I wonder if it’s just itchy or if it means something more?” So, without further delay:

26

Seems my neck itches.
A bit of redness shows up.
Two days off. Try the cream.

25

Back in graduate school, one of our cats (Ya-Ya) was acting out and attacking the other cat. Like all cats, he is pretty terrified of the vet. We took him anyway, and they suggested a pet psychologist. (You know where this is headed, right?) So the pet psychologist comes into the vet examination room, and there is our cat on the vet table. The pet psychologist starts talking to us. She couldn’t talk to the cat, but she hardly even interacted with him. It was all about modifying our behavior. She said a lot of things that presupposed we lived in a big apartment with lots of space and could do all sorts of stuff to the cat that we really couldn’t do. She went on and on talking to us. For a like half an hour. Eventually, we all look down and our cat has fallen asleep on the cold, metal table in the terrifying vet office.

Waste. Of. Money.

I tell you this story because at one point in today’s treatment, while attached to a cold, metal table and immobilized via a form-fitting mask with a mouthpiece, I caught myself dozing off. So now I know how my cat must have felt. Alas, it also means I made no progress on learning the long middle part of the routine. There’s always tomorrow.

I have not much else to report. The weekend was largely uneventful, somewhat social and I felt okay, and Monday there was no beam. I’m getting some of my own work done and making some music. We are also hooked on the hockey playoffs now, though Game 1 was a real bust.

Today’s Symptom Haiku:

Drowsy after beam
No immediate effects
Psychosomatic?

23

I am definitely overthinking things.

I had originally said I don’t want to sit in the Green Room, I wanted to sit in the big sunny waiting room.

The thing is, then am I somehow ditching the other cancer patients going through EBR? There is a social scene in the waiting area. Of course everyone’s story is different. And it seems to me like the family members carry most of the emotional burden, rather than the other patients, which further supports my earlier thesis about the projection of “bravery” and all those other emotions that are supposed to go with cancer.

I am not certain if this actually happened, but I think a woman waiting for her father said something about them finding a cure for cancer soon, and I may have replied that I certainly hope so, but then something else will kill us all eventually. You know, because humans are not immortal. I was not trying to be morbid. I hope I didn’t actually say that but I at least thought it. Luckily, that was one of the 4:15 appointments, and I’m on 12:30 now. So maybe the other Green Room People need to be protected from me. Even if I do just sit there and put my hair in pigtails, mostly.

But of course who wouldn’t want a cure? Personally, I would settle for less medieval treatments to start.

Which leads to another existential question I am currently overthinking. My symptoms are now not symptoms of someone who has cancer but symptoms of someone who has been treated for cancer. Hypothyroidism because I don’t have a thyroid, a bit of a radiation burn (alas, it does not look like I’ve been in the sun). I have no immediate anxiety about the disease or my mortality. I know thyroid cancer is a chronic condition, not something that is cured, but I can live with that as it seems to be under control. For now, there is just some dread about EBR side effects, but that’s mostly still in the future tense and EBR certainly isn’t going to kill me. Does that make a difference? I have no idea. Maybe this is where that “good cancer” part comes in.

I do hate that phrase.

Today’s Haiku:

Redness visible.
Not like a suntan. Too bad.
Weak fashion statement.

22

Today’s word of the day is “iatrogenesis.” It means medicine-caused illness. I stumbled across it reading a Jody Berland essay on Chronic Fatigue Syndrome this morning. She attributes it to Ivan Illich’s usage in his writings on medicine (for instance, this piece. But I suspect the term has a longer history worth looking up.

In any event, it is the latest stop in my wanderings through the existential forest of “is it cancer or the ‘cure’ that is making me feel sick?” I wonder whether my side effects fall into the category of iatrogenetic. It would seem that they do, in the sense that the treatments I am undergoing actually do damage my body. The effects are more or less known and predictable. Does it change the meaning of the dry crackly feeling in my throat this morning as I swallowed my toast? What does it mean that it’s the treatment and not the cancer?

More Misbehavior in the Green Room

Thanks to my friend Derek, I present you with another Onion cancer classic “Man With Friend With Cancer ‘Going Through a Rough Time.’”

Symptom Haiku

Scratching without thought
Prince song “Cream” sounds in my head
Make the connection

21

Tough crowd today in the green room! No eye contact, no smiles, no nods from the other patients or hangers about. It’s like everyone has cancer and is going through a brutal treatment or something. Or maybe it was the awful Tilly hat I have taken to wearing because it actually provides shade for my whole neck, which is important when it’s insanely hot out. It was a t-shirt, sweat shorts and that. No sense in dressing up to go outside, walk fast, get covered in sweat and then get zapped. Luckily, I had a student paper to read and I just discovered the New York Times iPhone app, which downloads the whole thing into memory, so I read away, blissfully ignoring the socially awkward situation.

This whole slow onset of side effects thing is just surreal. The dry crackly feeling is slowing starting to flower into pain, and it’s surprising what bothers me and what doesn’t. Today I ate crackers with no problem, but long pasta with porcini mushrooms tonight kind of hurt. I ate it anyway, figuring it’s my last shot at it for awhile. You’d think the dry crumbly thing would be worse than the smooth, easy to chew thing. Go figure.

I’m sure that would have been better in haiku.

19

Fluoride gel, not paste.
Frustrated with pharmacies.
Magic mouthwash? Wait.

18

With any luck, the symptoms I am experiencing will develop and plateau, rather than simply increase on some kind of curve forever. At least, that seems to be how my various medical professionals tell it. From here on out, something new may happen every 3 days or so. Right now, there is some pain with the mechanics of swallowing but no pain related to kinds of food (such as tomato sauce). If I swallow a little too much, it hurts and I get this weird pain that shoots down my right arm. If I had to guess, that would be the result of swelling.

Which makes me glad for the magic mouthwash. The compounds vary from hospital to hospital, but the Jewish seems to prefer a combination of a steroid, an antifungal and an analgesic. So 4 times a day I now gargle and swallow what is essentially a hydrocortizone smoothie. I can hear the voice of Homer Simpson in the distance: “mmmm, hydrocortizone!”

It definitely helps with the swelling, and although the taste is awful, so far it is the only bad thing happening to my taste. I’m also maxing out on the Tylenol, as the next step is codeine, which will put me to sleep. I’m not a big fan, at least not during the daytime.

This next week is a big one with the Learneds in town, but I am going to have to take it easy. Fatigue usually hits sometime in the afternoon post-beam, and pretty soon I will need to get back into the habit of a regular nap, so that I can function better the rest of the time.

Oddly, weekends are hardest as a day or two away from the beam seems to allow new symptoms to sprout or show themselves. I don’t understand it, but at least I’ve got drugs to ward off whatever happens next.

17

At yesterday’s radiating, one of the technicians asked me about my symptoms with the implication that I am doing unusually well. There are at least a couple that show up by week 4 that I haven’t had, though truth be told with the days off I am slightly behind week 4 (if I was right on 5-per-week schedule, this post would be titled “15″ today). It made me feel good to think that I am “strangely asymptomatic” but I know that won’t last forever. As if in some poetic turn, yesterday two symptoms got worse. My burn suddenly looks uglier and more tender for reasons I can’t quite fathom, since I’ve been wearing the ridiculous Tilly Hat religiously to provide shade to my neck and it had been consistent for awhile. And my voice got a lot worse yesterday, though that is less of a mystery, between the smoke from the forest fire blanketing Montreal and all the talking I did yesterday in loud environments.

The “Learneds” are in town. For those who don’t know, most of the professional associations in the Canadian humanities and social sciences meet all at once each year. Which is good because they are all pretty small, but when you put them together, there are all sorts of interesting synergies, talks and chances to see what’s going on in other fields. I’m not going to very much this year since it’s a bit much to head out there, come back to get radiated, and then head back out (which is too bad because I have students presenting) but I am managing to see some people and attend evening social events. Last night was a really fun book launch party for 4 friends, followed by dinner. Foolishly, I resisted the allure of the dork-o-phone, so my voice is still pretty rough this morning.

Yesterday was a big day for other reasons, but that deserves a post of its own, which will come in good time.

(Stuck at) 16

Today’s post was supposed to be titled 15, marking the halfway point through external beam radiation (in terms of treatments, not days). But that’s not what happened.

I arrived 2 minutes late to my treatment, worried that I was holding things up. But upon arriving in the green room I found the family that’s always ahead of me, as well as another guy who has started hanging around after his treatment. It’s a full on social scene in there now. Anyway, it turns out that the x-ray machine which scans patients before we are zapped was broken. They gave us a 2pm estimate for the repair, and so we were shuttled back to the big sunny waiting room, which was an even bigger social scene. Hope & Cope was out in full force with a volunteer and there were also two clowns.

Yes, I said clowns.

They seemed keen to show me a magic trick, so standing there in my pigtails (I always “do my hair” in the waiting room while waiting, and hadn’t yet bothered to undo it), one of the clowns put a pen “through” a $5 bill, and then took it back out leaving no hole. I was satisfied, and they were too. File that under “psychedelic aspects of cancer treatment.”

So the ever-growing group of patients and I waited in Zone (aka, the sunny waiting room) for awhile. There was more talking with other patients. Wednesday is the day that I see my doctor, and so eventually I got in to see him. Since we had a little time (or he was in the mood to take the time, he had a medical student with him), after going over symptoms and asking for various drugs, I asked if I could know more about my treatment plan. That occasioned a trip into the “visualization room,” which I am delighted to say has nothing to do with “positive visualization” of any sort.

We sat down at a computer and he pulled up a CT scan of my head and neck and gave me a tour of the zone he was radiating. It’s from just above my clavicle to a little further below my jaw line than I had anticipated. In fact, he is deliberately trying to miss my salivary glands, which is perhaps why I can still taste stuff (except right after swilling the magic mouthwash, which has its own unique and unforgettable medicinal taste that stays and stays). He also explained that the treatment is entirely preventative, which I had surmised, but it was nice to have it confirmed.

After all that, I went back to the green room and inquired with one of the technicians, who said it would be at least two more hours before the machine was back online (this was well after 2pm; my daily appointment is for 12:30). Having been given my doctor’s blessing to take the day off and start up again tomorrow, I headed home. (I am sure I will have to make it up, which may alas push me into St Jean Baptiste weekend.) Tomorrow I am scheduled for a 7am treatment so I can make convocation. They assured me the x-ray would be fixed by then. I am disappointed not to change the number on my chalkboard, but I had to see my doctor either way, and it was nice to learn more about my treatment plan. And there will just be two day 16s on my sound art project.

I’d hoped to make a 4:30 keynote at the Canadian Communication Association today but alas, with transportation, a stop at the pharmacy, eating and showering, I wound up hopelessly late. At least there was the reception afterward. . . .

15

Finally, halfway! And still relatively asymptomatic. The skin on my neck and lower jaw is now pretty sore even with the cream (but less itchy). For now fatigue is steady in that I get bursts of it during the day but it’s not constant. Swallowing has actually improved a little since the 2nd day I was on magic mouthwash, perhaps because of its cumulative effects and also because I have been particularly attentive to the viscosity of the food I consume. And I drink vast quantities of water with meals.

After some inquiries this morning, I have it on good authority that the arrival of clowns and the breakdown of x-ray machinery yesterday was just a coincidence. They come once a month. Just in case you were wondering. One of the technicians said to the clowns that their timing was not so good. . . .

Yesterday, I awoke at about 6am for a 7am dose of radiation so I could attend convocation. Which is the subject of the rest of this post.

McGill splits convocation into several different batches, and the Faculty of Arts (of which our department is a part) is also split in two. We got the 10-12 slot. As part of the stage party, the other profs and I (and assorted others) gathered in the Arts building at 9:30 to put on our very medieval uniforms and hats. McGill’s regalia in red, black and various accent colors are far superior to the University of Illinois’, which are an unfortunate combination of orange and blue. Also, we got nice puffy brimmed hats instead of mortarboard caps. In any event, since the university loans faculty regalia if they don’t own any, we were happy to wear McGill’s. Actually, because I am a larger size and the regalia company is less than accommodating (despite several weeks’ notice), the rather ingenious convocation officer found me a larger sized gown that happened to be for a doctor of music. So while others in the arts procession who didn’t bring their own regalia got green trim, I got pink, which actually looked great. And I guess that will do until the Faculty of Music gets around to offering me a courtesy appointment.

Anyway, when the ceremony began, we put on our outfits and marched down the center of campus behind a guy with bagpipes. I was first in line on the right (not my decision) and it was loud, especially when we entered the tent set up for graduates. If you have never had the chance to march in step with someone playing bagpipes, I actually highly recommend it. It was an unexpectedly moving pleasure, especially walking into the space with the hundreds of people. We then took our place on the stage, sat through speeches, watched our students graduate, and then marched out two hours later (give or take). Alas, there is no opportunity to hood one’s own PhDs, and though some profs got up to congratulate their own students or students in their own program, I didn’t really figure out that this was normal in time to do it for my own student who was graduating and I had a slight fear of falling off the rafters in a most spectacular fashion, but it was still nice to be up there.

Also, completely by accident and not by choice, my face appeared behind the podium on the big screen on several occasions. As far as I know, this was not an issue except when the chancellor went on an unexpected excursus from his ceremonial speech to instruct the new graduates about how “you are in control of your health.” I’m sure it wasn’t in reality very long, but trying to keep a straight face at hearing about how we are all in control of everything was a real challenge, having just arrived from external beam radiation. Neither I nor any of the other cancer patients I encounter every day in the green room are “in control” of our diseases or our treatment. We have submitted, and maybe committed to the situation (at least I have), which is very different from being “in control.”

To be fair, maybe it was just how I heard it and my own state of mind given what I’m dealing with. But maybe it was the cognitive dissonance from the fact that it was the parents and grandparents in the audience who were more likely to be the cause of the healthcare-occasioned fiscal crisis than the hundreds of about-to-be-former undergraduates. Or maybe it was the fact that I don’t think the proper response to the fiscal challenges facing healthcare is to tell the sick not to be too much of a burden on the system. I don’t know anyone who wants to be sick. Or maybe it was just a dose of puritanism to go with those bagpipes I enjoyed. (Moral: there may be a social cost to enjoying bagpipes too much).

A portion of the most common causes of death are preventable (as he said, “eat right, exercise every day”). But death itself is not preventable, and neither is the breakdown of the body or mind given enough time and given the varying fortunes that life deals us. Every one of us will one day become subject to and in need of care from the healthcare system. The fact that healthcare costs will rise as the population ages is no doubt a cause for great fiscal concern, but I am pretty sure we will all eventually need some of it, no matter how well we take care of ourselves. That is not a fault; it is the human condition.

Happily, the other convocation speakers gave nice talks very fitted to the occasion (including my dean, who I did not expect to hear as a convocation speaker), the valedictorian got all the right laughs, the students smiled and occasionally showboated as they got their degrees, and the families and friend hollered and applauded, just as it should have been.

Healthcare policy and early-morning radiation aside, I would have to say that I have never really liked going to graduations, but I very much enjoyed this one, and would do it again sometime. And it was a delight to see our PhDs march across the stage.

As to bringing politics and morality into graduation speeches, I have probably spent a disproportionate number of words on what the chancellor said. But take it from someone who learned the hard way. It’s probably just not the right gesture for the venue.

14

Switching to silver.
Burn sometimes surprises me;
sometimes I forget.

13

Known when you feel it.
That’s radiation fatigue!
Drain closed, then open.

12

It’s Carrie here, doing a guest entry on the cancer crawl.

Today I accompanied Jonathan to radiation, for the first time. Jon’s got a routine down at this point: walk to the Jean Talon metro (getting some exercise in), take metro to Cote-des-Neiges, walk to JGH, enter swank cancer facilities, say hello to everyone he knows there (several people by now), drink a glass of water (or one of three kinds of juices, which is awesome), enter the green room, part hair into ponytails, remove overshirt (if wearing one), wait to be called into radiation room. This is where things get interesting, and rather awe-inspiring.

First off, the radiation room has a giant, 8″ thick steel and lead door, like something out of a Hollywood set for a Cold War drama or a hyper-security conscious “safe room.” This is radiation we’re facing here, so it’s good they have a thick metal door.

We walk through the door into this giant room. This is the biggest room dedicated to a medical procedure for one person that I have ever seen. It is really big. The machine that delivers the radiation is probably 10 feet high, and I would soon learn, it is attached to the wall but it rotates 360 degrees.

Jon has three radiation techs who help get him situated on the table. They all strike me as very young, and I noticed that they all have great hair. They were happy to see me, and filled me in on everything they were doing.

The techs line up Jon in part based upon a set of directions I see on a screen to my right. There are screens everywhere, and I know the screen is about Jon because it includes a photograph of his face. After they afix his mask to the table, there are also lines I see that have been drawn on the mask that will be used to orient him to the machine via 2-3 green lasers that the radiation machine casts from its right and left sides. I am relieved to see the green line lining up well with the right side of his mask, and just before I am told we must leave the room because the treatment is ready to begin, I see that a light is shining on the Jon’s masked chin, in a precise square shape. I think this is the “target area” — something about the lights and lasers feels very reassuring to me. Especially after having read that horrifying New York Times story a few months back about malfunctioning radiation machines, and the mis-targeting of several patients, to very detrimental ends.

The techs and I leave the room. The giant steel door closes behind us and Jon is now locked in, and we are locked out. Two of the techs take their positions at a computer with four screens. The far left screen is divided into four video camera shots of Jonathan lying on the radiation table. The second left screen is the one showing the radiation program running, with the amounts of radiation being given. The third screen shows an X-ray of Jonathan’s neck and face. This is the first screen the techs pay attention to, for it is how they line up the radiation beam to Jon’s physical position. Each day they start him on the table with an X-ray which they then use to calibrate the targeting of the beam based on the position of one of his verterbrae. This, I am told, is how his radiation oncologist told them to line him up. I guess there are other options.

He’s not lining up well today, so one of the techs goes into the radiation room, pulls the sheet under Jon, and returns to the control room. Radiation patients cannot move once they are on the table and afixed in their masks.

Once he’s lined up well and the machine is targeted, the radiation begins. The 10′ machine makes three turns, starting from his left shoulder and going across his body and around the right shoulder to the underside of his skull and then back around two times. While the machine is headed around, on the fourth screen I am able to see the exact shape of the radiation beam, which changes with each movement of the machine across and around Jon’s body. It’s pretty cool and weird. I hadn’t really considered that the beam itself could be manipulated so much. It seemed like there were about 40 different dimensions — or slices might be a better word — through which the radiation beam is directed.

Then radiation was over. In total it took maybe 10 minutes, or a little less. Jon went and put cream on his radiation burns and fixed his hair, and we were done. We validated our parking ticket — radiation patients pay $5 rather than $15 to park their cars — and headed out for a lunch of crepes near our old neighborhood before going to the license renewal place to update Jon’s provincial medical card. We hope after this he won’t be needing that for awhile.

P.S. After Jon took a short nap, we went on a suburban adventure to eat Italian and see The Trotsky, a new film with Jay Baruchel as a West Montreal high school student who believes he is the reincarnation of Leon Trotsky. With lots of Montreal inside jokes and great music, this movie was a treat.

11 (On Professional Websites)

In the comments to #13, Aimee-Marie asked:

I was considering putting together a simple website with some of my stuff (vita, pubs, etc) on it, but was given advice that this might lead to my information being “out of my control.” Since you’ve gone the other direction completely, I’m wondering if you had any energy to philosophize on this for a moment?

Yes, I have gone 100% the opposite direction. If I was an assistant prof on the market, I probably wouldn’t go into such detail about my cancer experience under my own name, but I certainly would have done it pseudonymously. I’ve written a bit about the experience of blogging and of being “out” so I won’t repeat that part, but then there’s the question about the professional website.

In general, I am totally in favor of a professional website for all academics looking to advance their careers. This is a preferable option to a website hosted by the department because you are in complete control of not only content and style but frequency of update. Departmental pages have a way of looking stale, and as the career develops, information proliferates on the web and it’s hard to keep track of. (In fact, I’ve got about five different sites all asking me for information right now, which I haven’t provided since I haven’t had a chance to even update my own site and have some other more urgent work priorities at the moment.) Of course, the downside is that you are are completely responsible for those things on your site, and you can’t really let it slip too much.

I’ll leave aside the how-to logistics (short answer: rent a domain name, and if it’s going to be a serious thing, rent hosted space; if not, use free space like wordpress provides). I recommend a simple and non-esoteric content management system, like WordPress, and a simple theme that looks good. The more flashy or complicated your site, the more dated it will look and the less compatible it will be. Set up pages with a CV that is updated once a year (don’t forget to remove your home address and phone if they’re on there, though anyone can find them if they want), links to your publications, a statement about ongoing research or forthcoming work, an “about” page, and a teaching page with philosophy and course syllabi. Do you give a lot of talks or travel a lot? Then add a section with that information so people can come see you. Then, make sure it’s part of your annual routine in August to update the thing.*

Anyway, do NOT add any content that will need extremely regular updating, or that will be a big hassle to update. The worst-looking site is one that has been dormant for a couple years.

A good example of a free, wordpress-based professional site would be that of my colleague, Becky Lentz. That path might be a good way to start, since you can always upgrade to something more expensive and elaborate (like the two-headed beast I’ve got going) if you get into it.

I cannot imagine a downside to having such a site in this day and age except for a neglected site, which is the internet equivalent of showing up to work in the clothes you slept in. As for the kind of personal blogging I do, or big confessions on Facebook, well, that’s a whole other thing. It does change the dynamic at work when everybody knows what’s up with your illness, but since it’s been 99% awesome and 1% annoying, I would definitely do it again.

That said, whoever said that the content on your site is “out of your control” is 100% correct in the sense that like all published material, it circulates freely and without your direction or permission, so you must exercise some caution in terms of what you put up. This blog has the air of full confession to it, which is fun, but I do leave things out. And for my five years as an administrator, there were many aspects of my daily life that simply could not be discussed here. So in part, it’s all an illusion.

——-

* In fact, this more or less describes the site I had as an assistant professor, though the section that’s now “academe” did exist in some form as well. I did host it on University of Pittsburgh’s server; I no longer recommend hosting on a university’s site. This blog didn’t start until 2004, after I’d arrived at McGill and set up shop independently of the university. And yes, Sterneworks is more or less a tweak on a 10-year-old design. I hired someone to transform the back end from plain html (that I worked up in Dreamweaver with “frames” and everything in 1998 or so) to a proper content management system in 2005. It worked out okay, but I think it’s probably time to update things a bit. I’ll try out some new looks and functionality over my sabbatical year. I’m running WordPress on Super Bon, and will probably switch Sterneworks to WordPress as well, just so I don’t have to keep track of the inner workings of two different Content Management Systems.

10

We’re getting close to some milestones: 2/3 of the way through today, and two weeks from tomorrow should be my last day of radiation treatment. Symptom-wise, I remain cautiously optimistic. I can still taste and talk, even if I do evaluate food choices in terms of viscosity. The swallowing pain seems steady and the fatigue comes and goes and means I sleep more than I have in a long time–about 9 hours a night plus an hour’s nap–but I am still able to do stuff. The burn pain isn’t fun and it’s the first thing I notice when I wake up, but if I’m occupied by something I can forget about it. Apart from skin creams, I am thus far free of exotic drugs. Oh yes, there’s the electrolysis-like effect of the lower part of my beard falling out. But there are enough fans of the clean shaven look that I may give that a try even when I don’t have to. In the last couple days, I have developed a strange dry cough that may blossom into something nastier by the time this is all over. For now, a little cough syrup at bedtime is all I’m taking.

“The time this is all over” is a little unsure. Radiation continues to work after the doses stop, so it is possible some symptoms may get worse for a week or two even after the count hits zero (though whether and how I will use negative numbers on this blog is as yet undecided). The exact arc of my recovery isn’t something I can chart out, but I am still looking forward to the end of treatments, even if there will be lots and lots of followup.

Today I saw the dietician and got a radiation nurse. The dietician is pleasant and chatty but not much has happened since her initial instructions. She takes my weight each week, which fluctuates a pound or two in either direction but hasn’t started to plummet. Maybe it will, maybe it won’t.

The nurse was a new thing. I mean, I’ve had lots of nurses in the last year but as of yet they hadn’t been part of the EBR routine. I guess they make sure patients get connected with a radiation nurse when the symptoms start to get serious. And if nothing else, I’ve got a nice radiant burn going at this point. She took down a list of my symptoms and treatments, and asks lots of questions about my state of mind as well, which I suppose is a good thing since no other medical professional has asked yet (apart from the radiation techs, in a more “how was your weekend?” sort of way). Not that they need to worry about me, but it seems like a good thing to have built into the process.

And now, a little gross-out haiku from this afternoon. You have been warned.

Radiation sleep.
Cat rests on top, then vomits.
Sleep now, clean later.

Category: Cancer

9

Suspicions confirmed.
Hormone levels almost right.
A few more mgs.

8 / Immigration and Denaturalization

I had a 7am zapping today because they have an emergency patient. Let’s hope that doesn’t have to happen again.

For years, my plan was to apply for citizenship the day I was eligible in fall 2009. Since you can be a dual citizen of the US and Canada, there is no downside, and given that we live here and contribute to the economy and affairs of state, it would be nice to be able to vote and get involved in formal politics.

Of course, cancer intervened, and now I’m more than eligible, which means Carrie is also eligible. Tonight we went out and got our photos taken for the applications, and in 13-15 months, we should be invited to a swearing-in ceremony. At least that’s the plan. Getting the necessary documents together was a trip, though. One of the required documents is the “IMM-1000″ — a “certificate of landing” — that is rather unfancy and unassuming. Nowhere does it say “THIS IS REALLY IMPORTANT. DON’T EVER LOSE THIS.” And yet, one gets complacent with one’s IMM-1000 when one is given a shiny, holographic Permanent Resident Card. Not only do we need it for citizenship, but apparently, we will also need it for some things related to retirement. So there’s been a lot of searching through old files, which I guess goes with spring cleaning.

6

Sorry to remain quiet on this front. Last night was my first use of anything narcotic in the process. Which is pretty good, I think. Codeine cough syrup. It worked for the intended purpose (preventing dry coughing fits as I fell asleep) and I don’t feel too wooly this morning.

As to the dreams, the only one I remember is arriving in California and forgetting the cat at the airport and having to go back and get him. (Though this may well have to do with dealing with his airline arrangements yesterday.) Also the highway was really messed up.

4

In honor of the World Cup, let us now say that EBR is in “additional time.” Substitutions are being made and players are making that last bit of extra desperate effort. It was supposed to be a six-week affair, but holidays and a broken x-ray have left me with 4 sessions next week, meaning Friday will be my last. After that, I will have an unspecified period of recovery.

After week 6, swallowing has grown more painful and the cough and soreness are enough to warrant some nighttime narcotics, which leave me wooly headed in the morning. The fatigue, happily, appears to be steady in its effects and I’m sort of living with it. Sunny days seem to help.

Also, Friday was a followup with the thoracic surgeon regarding a CT scan of my chest, the subject of today’s excessively literal haiku:

That blip in my lungs
they didn’t think was cancer?
It isn’t cancer.

Probably, anyway. No change since January. Followup in a year.

3

I am now officially at the “I am sick of this shit and ready for it to be done” point. This is the feeling I remember vividly from February: an absolute surplus of will and energy, all driving at getting me out. Of course, my confinement is only temporal now, with a 2.5 hour hole in the middle of each day. It’s way better than being in the hospital to be sure, and I’m in much better condition than I was then. But I am still sick of being sick. I do not want to “discover” any new symptoms or “explore” new bodily sensations. I am tired of the restrictive diet, the limited hours, the dulling from pain and fatigue and drugs, and the whole sick person routine. I know that when I walk out of the green room on Friday I will not begin healing immediately, but it will still feel good.

As happens in institutional cultures, I have become a kind of fixture in my 7th week of radiation. I have worked out my niche in the ecology of the radiation section. I know the movements of the machine intimately–I have mastered its choreography and even the sequence of noises it emits. I know the best ways in and out, the relative merits of different taxi routes, and the rhythm of the blue line trains. I have my routine in the place down to a science, or maybe it is its own kind of dance in counterpoint to the machine’s. And I’m the informant for new patients. Friday, N the brain cancer patient finished. He’d been before me the whole time since I’d come to the 12:30 slot. Now there are new people in the green room, and I get to tell them about how it is, the virtues of the barcode sticker you can get for the back of your hospital card, etc. Soon, they will take my place.

2

Click this and below.
Today’s post is audio.
Right click to download.

2

Click this and below.
Today’s post is audio.
Right click to download.

Source: Thyroid Cancer Superbon

1

(PS — Earthquake=Preparation for California)

There Is No Zero Because Zero is Not Exactly a Number

and because I have no more cancer treatments to count down. Sure, there’s weeks of recovery and years of follow-up, but the acute phase of treatment is officially over and I am a happy camper.

What I am doing to celebrate:
1. Completed and will mail out our application for Canadian citizenship.
2. Long nap.
3. Dinner and music with friends.
4. More socializing and napping over the weekend.
5. I am taking a leap of faith that I will be in good enough shape to go to Brazil in 5 weeks’ time, so we started looking into visa requirements.

In the end, EBR was kind of anticlimatic. I certainly experienced nothing approaching what other patients referred to as the “worst pain of their lives” although if I swallow the wrong thing or the wrong way, it does hurt like hell. The burn on my neck is also plenty unpleasant, but it’s just that. I take mostly over the counter medicines, and just one spoonful of codeine cough syrup at night to control a really nasty cough. How bad can that be? I also appear to have all my taste. Which is amazing. Either I got lucky or they really did aim “away” from my mouth and throat.

Recovery will be slow. In fact, for the first couple weeks I may not recover at all as the radiation continues to do its work. But at least I won’t have a 150 minute hole in the middle of every weekday. The burn may let up in about 3 weeks, but I will need to put heavy sunscreen on it forever, and I need to stay out of chlorinated pools for a good month. So I will still be rocking the dorky Tilly hat until the burn is healed enough to use sunscreen. The swallowing pain may stay with me for 6 weeks or more, though I expect that it will decrease slowly, just as it ramped up slowly. As to the fatigue, who knows? My guess is I will feel waves of it for a very long time, as I just got through about 9 months of intensive treatment including 2 kinds of radiation and 3 surgeries. But I’m hopeful that it too will start to remit in a few weeks and that I can get back to being me, at least most of the time.

Luckily, I have a very non-stressful year to look forward to.

As to the future of this blog, there will still be cancer blogging, as I left a few aspects of the year undocumented and would like to tidy that up while it is fresh in my mind. Though I certainly will feel empowered to address other topics, or take a summer break as I did last year. We shall see.

Without a countdown, I lose all sense of time

Not really, but I think the opiates are staying with me into the daytime, making the whole “get back to work” thing a little tougher and slower than I had imagined.

I can confirm that without daily treatments, the radiation’s effects continue to get worse. The burn is really ugly, and swallowing hurts more, not less. The fatigue is steady but I have a new theory on that, which would also explain my erratic sleeping and my sudden tendency to run hot: I’m slightly hyperthyroid instead of hypothyroid. Though the sleep may just be a cough issue.

Anyway, I guess I’m “done” but I still get to be a “sick person” awhile longer.

Symptom report aside, I have managed to socialize a bit, keep up with walks, and do some of the things that have been piling up on my desk when I wasn’t working at all. I’ve also been keeping up with the World Cup. Monday I had what seems to have become my annual Entourage disaster and spent several hours on the phone with tech support at McGill and Microsoft (and Carrie put in a call with Apple as my voice was giving out). Ugh. I had planned to revisit my choice of digital tools sometime during sabbatical. Email programs just went to the top of that list.

10 days out, the wave breaks

After a few days of stuff hurting more, the burn on my neck appears to have crested (although there’s a nasty raw part I won’t detail here–suffice it to say that I’ll be stopping by the nurses at radiation oncology tomorrow on my way to the respirologist; also I was motivated to buy some open necked shirts and v-necks today). My throat pain is also noticeably decreasing. I’m going to try it without narcotics tonight. It might be too soon, it might not be, but it’s worth a shot. My voice is still kind of crap, and definitely worse than last week, which means I am staying off the phone for now. I have managed to go out in public without too much trouble, though sometimes Carrie can’t hear me.

I had hoped to be “back to my life” at this point but that was of course both unrealistic and, well, silly since I’m only just over a week out of radiation and I still need a nap every day. I have started doing some things and will continue to try and clear off my desk next week. I’ve also got an art project to keep me occupied as well as the World Cup, and of course a social schedule.

Well, crap

Today was of mild medical interest and greater sociological interest. I visited the respirologist, and neither he nor I are any longer certain whether I actually have asthma, so there’s another round of tests in a couple weeks. It could be a misdiagnosis from when there was a giant dead tumor in my neck last summer.

I also visited the radiation oncology nurses for them to have a look at the skin on my neck. The consensus between them and a resident was that the skin was breaking down in the crease of my neck from the radiation treatment. I was hoping for a really bad heat rash. The prescription was — a dressing! File under “I thought I was done with this shit.”

The dressing consists of some revolutionary new antimicrobial fabric, gauze and some kind of gelatinous goo that is supposed to keep it moist. The whole thing is covered by another bandage that is affixed to the back of my neck and has already come off once. It’s supposed to stay on for 5-7 days but we’ll see how long I make it. It’s supposed to work wonders for open wounds like mine, and it is at least a change from the sticky grey goo I was putting on my neck 3 times a day (flamezine).

On the way home from the hospital I picked up some groceries and some bagels (as I appear to be able to swallow bagels again, at least once I’ve chewed them) and I am pretty certain every single stranger took a good long look at the giant bandage on my neck. So much for the joy of being out in public. I take consolation that it’s insanely hot outside and we have air conditioning.

Then again, Carrie just got home and dropped all the shades because she had her eyes dilated. She can’t see anything but is blinded by the sun.

EDIT: I forgot to mention that said bandage-staring caused a scene at the bagel shop. A young mother sends in her very young child to buy a bagel. He wants cinnamon-raisin, she keeps yelling for him to buy blueberry. I am next in line, and there is a quickly growing line behind me. The woman behind the counter retrieves the requested bagels, first cinnamon-raisin, then blueberry. Except the child has $.75 and this bagel costs $.90. The child is too young to understand how to count money or the concept of price. Or apparently that he wants a blueberry bagel and not a cinnemon-raisin one. By this point, the mother is outside the store, forced out by the growing line. The woman behind the counter keeps addressing the child who is staring obsessively at my bandage and ignoring her. I’m sure this went on for like 10 seconds but it felt like 30 minutes. Eventually the thing was resolved by getting the mother’s attention and order was restored. If I wasn’t so weirded out by the whole situation, I should have had the presence of mind to cover the $.15 difference and thereby end an extremely awkward situation. That would have been totally worth 15 cents.

Neck Bandage: Day 2

Is the magic fabric working? Maybe!

In the meantime, I feel like an animal just home from the vet with one of those Elizabethan collars so it can’t lick itself:

They’re hilarious on pets, but it turns out I’m not as fond of them on humans.

Also, the thing hates the heat. I got this creepy crawly feeling on my neck as I was running errands in the neighborhood. Good thing we have air conditioning.

Free, Again

A quick update on the cancer front.

Yesterday the neck bandage came off. The antimicrobial fabric is indeed a medical miracle and apart from the public spectacle part of it, I would recommend it highly. The open wound area was almost totally gone and the remaining area has responded very well to flamezine. That’s a relief. There is still a bunch of black crap on my neck (it looks dirty) and as usual my skin is sore from the adhesive, but I can live.

Otherwise, I seem to be recovering well, my head is clearing after being off opiates for awhile, and my energy levels are up, but only because of shameless use of air conditioning. My voice is still a bit gravelly and doesn’t project well but it is getting better too.

If all goes well, cancer updates will be replaced with some nerdy tech updates next week.

Asthma, Text, America

My medical appointments are slowing down, which is a good thing, but Monday I went in for an asthma test to see if I still had it, or whether the breathing issues were a side effect of the cancer. Turns out it’s a little of both. My test scores without medication were similar, but I respond much better to the drugs. So drugs it is. I also had the latest blood test so we will see what that says about my hormone levels. I imagine I’m pretty close to kosher at this point, but you never know.

My head is clear and I’ve been writing, though, which is delightful. It’s going to be hard to get into a groove with a month left of summer and moving to do, but even a little bit will get me good and warmed up for California, where I will have to spend the first couple months doing the final revisions on the book.

In other news, my passport ran out of blank pages, which turned out to be a real hassle but only because the information on the US passport site is unclear. After a bunch of calls to phone menus, completely incorrect information from an American agent I had to call via Skype because the 1-800 number doesn’t work here, and the operator at the embassy in Ottawa refusing to allow me to talk to a human being, I took a leap of faith and made an electronic appointment with the US consulate for this morning. The consulate is a bit of a fortress downtown and the entrance is super high security. On their website there are lots of warnings as to what you can and can’t bring in, so I brought my papers and a book to read in a clear plastic bag.

After the body cavity search (A JOKE–the security guys were actually very nice) I took the elevator to the 19th floor where it looked more or less exactly like where I go to get my driver’s license and healthcare card renewed, on down to the chairs and the strange ticketing technology where you get a number and a letter. $82 and about 30 minutes later I walked out with 20 new pages sewn into my passport. The moral of the story is that if you’re not in the US, and you want to figure out what to do about a passport issue, just make an appointment and go to the consulate. Then again, that may not have worked as well for the guy ahead of me in line, who entered Canada with a driver’s license and birth certificate, but who couldn’t get on a plane because his passport was expired. I felt bad, but then I also felt like issuing the following public service message.

Dear Americans,

Canada really is another country.

And why did I need extra pages, you ask? Because I can travel again. First up: Brazil.

The New Normal, or Is That a Summer Hiatus Coming On?

For those readers not accustomed to the ways of academic blogs (which is mostly academic only by virtue of its association with its author), there is a tradition called the “summer hiatus.” People spend less time on the internet reading blogs and writers take time away. I tend not to announce such things but since my last post was more than 10 days ago, it appears I am at the very least slipping into at least a summer slowdown. Today I leave for Brazil and while I sometimes think it would be cool to blog while away, that rarely if ever happens. When I get back, it’s a 20 day sprint through social events, defences and various wrappings-up to the 31st, when we again board a plane (this time with a bag-full-of-cat in hand) and fly to California to begin our sabbaticals.

I can assure you there will be a “special California edition” of superbon once we’re settled but August does not look promising.

The headlines:

I have no idea what the “new normal” is but even though I expect my body to continue to change over the next year, I appear to be feeling it. I still have some side effects but most of the time I forget about them, apart from my “new” voice, which I notice every day. I sleep a regular amount (I do tire out if I’m in loud spaces for too long without the voice amp), and I am effectively “back to work,” though “normal at work” is also hard to fathom since I was last not an administrator more than five years ago in June 2005. I have been spending my days doing scholarly things: writing, getting books together for a reader (which the help of an RA, of course) and reading people’s work. Sort of what my summers are supposed to be like. Evenings have been very social, which has also been great but not conducive to blogging.

The voice:

As I said above, the voice still isn’t where it “should” be in my mind. Part of it is probably me going out too much and talking too much. The more rest it has, the better. I practiced my keynote Saturday and talking for 45 minutes straight with long sentences is hard. I am really glad I have a year off from teaching the big class. The best analogy I can think of is a musician relearning an instrument. My old style of performance just doesn’t work and I haven’t quite figured out my new one yet. And speaking like that takes enough out of me that I can’t simply practice it over and over. So I will wing it. At least the ideas are very cooked.

Work:

I’ve cleared a couple essays off my desk, finally begun revisions on the mp3 manuscript, and am making penultimate decisions for the Sound Studies Reader while I still have access to my library. It is really nice to be able to think again and to be lucid. I also have a bunch of defences in August as students try to wrap things up before I go, or so they can move on to new things like postdocs.

Music:

The lo-boy CD cover has been designed and the whole thing will get shipping to the pressing plant in August, for a September “release” (watch this space). My new band (now a year old), tentatively named In the Unlikely Event of a Water Landing (aka, two guys who make mostly instrumental rock and electronica), is finishing up a 5-song EP which should be done but not out as of September. Again, watch this space. And I have another “art” project based on the cancer experience in the work that will get finished this fall.

Entertainment:

Summer blockbusters are totally disappointing, except for Inception, which is like The Matrix with a script. I was going to write a comparative blog post about bad action movies versus the spectacle of circus, as we saw three shows in July (in part because of the local circus festival). Let’s just say this year the circus won, by far. Of course, it’s not Ringling Brothers stuff. It’s much more avant-garde than that, and there are no animals other than people involved. The best show was definitely put on by les sept doigts de la main (literally, the “seven fingers of the hand”). If you like live spectacle (if I say “acrobatics, contortion, juggling and music” it doesn’t quite have the same impact), I can’t recommend them highly enough. They do tour.

We also went to our 2nd live Canadian Football League game, and I could see that becoming a regular thing. I am not as fond of it as NFL when it comes to TV, but live you are much closer to the field, and the vibe is just, well, different. We sat in the end zone which means that we couldn’t really tell what was happening when it got close to the goal line on the other end of the field, but the rest of it was just outstanding, and when it was close to our goal line it was line you could touch the players. Carrie says it’s more like a college football atmosphere, which makes sense since the Montreal Alouettes play on McGill’s campus. It helped that it was a beautiful, temperate night. I was smart enough to bring the voice amp for that (occasionally having to hold the speaker up to my neighbor’s ear so I could be heard) and I half hoped that the “dork-o-phone” would appear on national TV. It’ll get a shot at appearing on Monday Night Football later in September when we see the New Orleans Saints play the San Francisco 49ers in San Francisco.

Tech news:

I got an iPad. For music-making and as an e-reader, it’s amazing. I can lay my hands on my music software now, because it can act as a controller for my main computer. Awesome. The productivity apps are a revision or two away from being very good though I managed to get my talk for Brazil onto it and projected correctly onto a screen. It’s not quite a full laptop replacement, yet, though it’s good enough already for travel, and much lighter than my laptop. I wouldn’t try editing an essay on it, but then I rarely do that kind of writing on the road. It’s a great reader but not a proper newspaper replacement because who wants to spill coffee (metaphorically speaking; I drink tea) on their electronics? My rating: extremely useful for your digital recording studio, a fun reader and tech toy. But academics could wait six months or a year for the productivity software to catch up to reality and not miss much. Also, one wonders about the competition when it comes out. . . .

Brazil:

What’s there to say? it’s winter there and the weather appears to be exactly the same as here, except the days are shorter. And we are very overdue for an adventure.

Good News, Fishing for Bad

Brazil was amazing, as expected. Rio is a very interesting and intense city, my hosts were wonderful, the experience was totally unforgettable and I hope to go back. My visa is good for 10 years.

Yesterday I went to the radiation oncologist for followup. He pronounced me fine and said not to come back; and to email him if I have any issues. Apparently my remaining voice issues (compared with May — the issues I had in May were related to paralysis that’s not going away) are related to dryness that may persist for six months or more. Good to know. Otherwise, things are healing up well and apparently the 85 spf sunblock I put on each day is working. Unfortunately, soon it will be time for new scans — MRI or CT, which means doctors go fishing for problems, which in turn will mean more tests to confirm data found in those tests. Ugh. Probably, though, I will have a respite until December.

Back to catching up on email; it’s going to take days to get through this backlog.

Life on Sabbatical

I haven’t said much of substance in this space apart from my SSHRC post, which is a whole other story. So let me set the scene. This is my first sabbatical, and I’m still figuring things out.

I had wanted a fairly routinized life, and so far that’s what I’ve gotten. We spend all day every weekday at the Center in our offices working, with a few exceptions (like when we shoved off early to catch the 49ers game). I am keeping to a 40 hour a week work schedule, more or less. I try and divide it up so that mornings I’m reading and doing my own work and afternoons I spend taking care of other people’s stuff. It’s a big crunch time for letters and September is traditionally the time when academics need to write, revise and polish the templates for letters of rec they will use throughout the year. I don’t expect every afternoon to be devoted to others’ needs but for the next week or so it’s going to be like that. Wednesdays there’s a talk at 4:30, with socializing before and after. There have also been a number of receptions and informal social events. We cooked some but we’ve been going out to eat a lot for dinner, perhaps too much, though it’s fun to explore. Evenings are short because I’ve decided to try and be on an earlier schedule and Carrie is humoring me since we commute in together. Weekends vary depending on what else is going on. We’ve gone on day trips and explored, but last Saturday I spent the day working on an audio piece and then we went swimming in the afternoon and had dinner with friends in the evening. The pool was great but afterwards I felt like Don Draper looks in the episode of Man Men where he decides he has a drinking problem and goes for his first swim. (I wasn’t even allowed in a pool until sometime in August because of the radiation treatment.) Sunday is of course football-oriented but we’ve been taking walks in the sunshine.

I should be getting more regular exercise. We loved the salt water pool at Stanford (free with your ID!) so that’s an option, and I should be devoting more time to music and audio practice, but that will come when the rush of deadlines is through. (I’d hoped to send off the penultimate ToC for my Sound Reader this week but it looks more like Monday or Tuesday). We are in our car much more than in Montreal, but it’s easy to get around. I love the heat and sunshine but it turns out that radiated skin just doesn’t like 90-degree weather regardless of whether you’re in the sun or out of it.

I’ve met some other really interesting people at the Center and will join a reading group on postcolonial theory and politics. I talk with other fellows every day at lunch, sometimes about ideas, sometimes about more idle gossipy stuff. I’m also starting to get some distance for my job and am beginning to reimagine parts of it. I occasionally “sneak away” from a more teleological task and instead just read something I’ve come upon for interest. I’ve already checked out dozens of books, though most of them are for the sound reader.

Not bad for September. Among our biggest successes: not spending much time getting set up. It took just over a week.

That’s the basics. Now we can get on to bloggy subjects like why American paper money is inferior, comparative studies of burritos, reading newspapers online instead of on paper, and my conflicted reaction to the incredible ease of consumerism here.

Retroactive Hiatus Declaration

Oops. It’s been a month. Sorry! I’ll be back. Santa Barbara is beautiful. The Center is beautiful. Tomorrow, we head off to Vancouver where we will stay at the Sylvia and I will talk at the Surrey Art Gallery. I’m sure they’re beautiful.

Source: Thyroid Cancer Superbon

Blood!

It wasn’t my first encounter with the US healthcare system since moving to Canada but it was instructive. It’s time for my various thyroid-related blood tests. I have my orders from my doctor in Montreal. I need to pay out of pocket, at least at first (I can petition Quebec to cover the costs but who knows how much they will cover). I call the Stanford University Hospital. They want $800 freaking dollars for a standard battery of tests for someone who has no thyroid (TSH, T3, T4, thyroglobulin, etc). I ask about a discount. They say 40% off for people who pay out of pocket.* Then I call the Palo Alto Medical Foundation, a nonprofit. $300 for the same battery of tests. 30% discount for out of pocket*. You can guess where I went. The whole thing took about 3 hours or a little more. Most of that time was on the phone with different people, all of whom were helpful. And only about 10 minutes of medical attention (once I was “inside the gates,” everything happened really fast). But it should be a lot more smooth and straightforward next time. At least I hope so.

More news when I have it (maybe Friday, maybe next Friday) but suffice it to say that I have a hypothesis, and it involves the first four letters of the word “hypothesis.”

*I just read recently in the Haggler or somewhere that you always ask for a discount on expensive stuff. I figured with prices this insane, they probably had one. What was amazing was how easy it was. All I had to do was ask. Which begs the question of why billing isn’t instructed to offer that amount up without prompting, since we all know which class positions are most likely to feel comfortable enough to ask for some money off, and which aren’t. . . . The moral of the story: always ask for a discount. Nicely.

Srsly wtf

It’s a weird stage of life when one hopes for blood tests to return a result indicating that something is wrong.

Well, nothing’s wrong. I don’t have any detectable tumor marker — which is awesome.

My thyroid hormones are right where they should be, which also should be awesome.

Except I don’t feel awesome. And thus my bundle of wacky symptoms appears to be something other than hypothyroidism. So now it’s off to investigate other possibilities (I have some alternate theories but since my first stab at self-diagnosis was an epic fail, I’ll just look into them quietly. . . ).

Or maybe I’m just neurasthenic in that grand 19th century tradition. Excuse me while I go write some romantic poetry and consider the intensity of a blade of grass.

Medical Progress + More Medicine and Money

Today was a big medical day. I stayed home from the Center so that Ya-Ya could get his eye pressure checked (glaucoma) and I could talk with a local endocrinologist about my fatigue. We went over my blood results and determined that my TSH could be further suppressed (which means increasing my dose of synthroid) and that it might make me feel better. I’m not anemic and I don’t have a hangover from radiation fatigue (two alternate theories that were dismissed), so that’s a relief.

Of course what is more blogworthy is my visit to a non-profit medical center for this task. They may still be nonprofit but money suffuses all the interactions. My Quebec insurance requires that I put out the cash and then ask for reimbursement (and when I don’t get the full reimbursement, I go to my private insurance–this will take months as you can see). When I arrived at the endocrinology department, I got an intake form which I expected to be the usual case history thing. Nope — there was room for 3 insurers, and then a spouse and someone not living with me they could contact in “an emergency” (like if I didn’t pay my bill). After filling that out, I sat down in the waiting room. I was called back up to sign another form regarding a discount for prompt payment (it said 25%, I was told 30 on the phone, which they gave me when I asked). Then I saw the doctor and we talked. Though I am happy to go through whatever is necessary to feel better, I did feel the need to ask for no unnecessary tests since each one would mean more money out of pocket for me. He did a careful physical exam and asked me lots of questions which showed that he was thoughtful and thorough, and then we went over where my bloods ought to be vs. where they are. My TSH is at .68, which is in the “normal” range but the American Thyroid Association guidelines suggest that it should be lower for high risk patients and anecdotal evidence from other thyroid cancer patients suggests that .68 is a bit high to feel fully good. There is a balancing act between TSH, which you want low and T3 and T4, which you don’t want too high. Synthroid does suppresses the TSH and elevates the T3 and T4, so past a certain point it’s not good to increase my dose. Nevertheless we’re giving it a shot and that will be that.

After the visit, I paid — it was about $300 before the discount and I suspect they were being nice. Then I went down to billing to see if I could pay for the blood test I had just under two weeks ago. The results are in the system but not the bill. The billing office is not a happy place. I saw the two people ahead of me come out of there with long, serious faces and I could tell from the tone of one of the conversations that the topic was unpaid bills that needed to be cleared up for further service.

I left the building marvelling at how lucky I am to be able to afford my healthcare.

Oh yeah, the synthroid was $20 for a months’ supply, about twice which I pay in Quebec. Though I didn’t shop around — I got it while picking up a few groceries.

Oh yes: Ya-Ya’s glaucoma? It’s stable. His vision isn’t great, though and I suspect it’s gotten a bit worse. He’s spent the day in his “safe place” (ie, the carrier) since returning home. The vet bills are higher here as well.

As to today’s report in the NYTimes that a judge ruled part of Obama’s healthcare plan unconstitutional, all I can say is “meh.” It is kind of stupid to mandate that people buy insurance, instead of simply specifying medical care as a right.

Shhh!

It turns out that sabbatical is not all that conducive to blogging. I’d left Montreal assuming I’d get so much done with all this time on my hands, and I’d be recounting all sorts of exciting things that have been happening in California, finishing the book in no time flat, undertaking several music projects and traveling up and down the coast every weekend. It may have been a little unrealistic. (I need to do a better job of imagining myself as a person with limits.)

Instead, I’m just having all sorts of stuff happen in California. I’m currently making a Very Big Push to get a revised mp3 manuscript out the door and hope to have a fully revised version by the time my mom visits in mid-Feburary. It’ll require logging some extra hours above my no-more-than-40-a-week rule, but my last big conceptual challenge is close to being dealt with (though I am currently crowdsourcing a coinage which is a bigger-than-anticipated hurdle) and then it’s just a matter of doing what I’m told and cleaning up prose. Or so I think. It’ll still take tons of time, I’m sure.

I am feeling better than I was in the fall, and it’s amazing how productive I can be when I’m not hypothyroid. More than once this term, I’ve worked all day, gone swimming, come home and made dinner, and then got inspired to make music for an hour or two before watching TV and cashing in for the night. That would have been physically impossible for me in the fall. Now, it’s possible my thyroid medication is in fact overcompensated, but that is an issue I’ll deal with after the next blood test. I wouldn’t want it to be fixed too much the other way.

I also would love to tell you about the Center, which is a truly amazing place, and some of our adventures in California thus far, and get into some serious US-Canada comparison. For now, let me just say that mail order is SO MUCH BETTER here. It’s kind of dangerously easy to order stuff for not much money. The entire US appears to work like the app store. All that may happen in due time. But this weekend we are gone to Oregon, where I give two talk and then we spend a day in Portland.

Source: Thyroid Cancer Superbon

A little cancer reading for you

S. Lochlann Jain, “Be Prepared,” in Jonathan Metzl and Anna Kirkland (eds.), Against Health, NYU Press, 2010. See also some of the other offerings on her page.

I did not experience much of tomorrow last year

I’m not terribly big on anniversaries, and certainly not unhappy ones ones, but a year ago today I went into surgery and did not find my way back to consciousness again for several days. Looking back at the blog entries (Feb 2010 on the menu to the left if you dare) I’m struck by what I do and don’t remember from this period. I remember briefly waking up in the operating room while they tried to figure out if I could breath. I remember flashes of the recovery room and the ICU, and being wheeled into a room of my own the following Tuesday.

I don’t know how much more I’ll write about the experience right now as all of my writing energy is going into book revisions. It’s very close and I can feel it, especially when I talk about it. I can apprehend the totality in a way that’s only possible near the end of a project.

But I will post a few pictures from my stay to mark the time, since I took them and never posted them.

Dawn

I spent the better part of the weekend after Feb 12th 2010 unconscious. Valentine’s Day involved me in a recovery room and Carrie showing up in red. (This year it involved special valentine’s tacos with pineapple salsa, but like idiots we figured Whole Foods wouldn’t be crowded and we could just stop by after work). By the 17th I was getting my wits about me.

This is the first thing I’d see every morning upon waking up and I don’t have the exact date on the photo, but this is the view out of my room, taken by me probably around 6am. The Montreal General is not a pretty hospital. To the contrary, it’s in need of some serious infrastructure. But the real estate is prime and the view from my room was simply astounding, as was the view from the lounges.

I would ask that as these pictures appear to please separate in your mind the quality of care from the condition of the room. I do think Quebec ought to put a little more into the quality of spaces patients and their families inhabit, but as I wrote last year, we quickly got used to the room, just as I once got used to living in dorms.

Morning

The sun came blasting at whatever time it chose to rise each morning. But that was fine. Hospital activity was concentrated in the morning. Residents would come by and check on me before their surgery or whatever they did all day. The physical therapist would make me take a walk. I would just be happy to have made it through the night.

The Wall

I stared at that wall for days. Quickly Carrie and my mom got sick of it, so there’s a poster of a sculpture I like at the Minneapolis Institute of Arts, and a poster for a talk by Cornelius Borck, with whom I was co-teaching a class that term. Judging by the tape marks, we weren’t the first ones to decorate.

I confess to having some trouble processing the fact that I was effectively unconscious from the 12th through sometime on the 16th or 17th. But now that we’re past all those dates, I mostly feel grateful to be here in California and not in that room.

Put there to relieve the boredom, no doubt

I was surprised at how little TV I watched while here. It was mostly music for me. And some reading.

The psychedelic floors

This is the floor of the bathroom in my hospital room. While I was on dilaudid, it sometimes shimmered in interesting ways. One night I stumbled in obscenely thirsty. After several sponges worth of water in my mouth, I discovered it was physically possible to drink and swallow. And the water was cold. I wasn’t supposed to do it, but I did it anyway.

Walking up and down the hall

This was the space I travelled — frequently — at this time last year. Tonight, Carrie and I dine with a friend at Chez Panisse (the cheap part) and tomorrow we fly to Los Angeles for the Experience Music Project Pop Conference at UCLA. I remember that I kept asking the doctors whether I’d be able to make it to California, and they kept saying yes.

The view from the lounge

The Room

Not for the squeamish

This picture is below the line, since it’s my trache (outside of me). Looking at it now, it’s hard to believe the thing was inside of me. This was the smaller size of the two I’d had in. I could talk, eat and swallow with this one and sort of breathe around it when it was taped. It’s amazing how fast I was able to get used to these things, though it’s also amazing how uncomfortable it looks just sitting there. I guess there’s something in that about the resiliency of the human body, or our ability to adjust.

Left Behind

After they took out the trache, they left an emergency trache kit in my room. I was happy not to need it, and I wonder if it was even the right size. On the last couple trache-free nights it sat there, ready. I was happy to walk out of the room, the floor (the staff said nice goodbyes and “please don’t come back”) and the hospital into the daylight. Well, sort of. Even though the radiation was really unpleasant, I much preferred it as an outpatient experience. In terms of the actual experience, the 16.5 days in Montreal General–through no fault of theirs–was probably the longest single stretch of time in my life.

Embarrassing Man Stuff

I’ve now been shaving for 10 months, which means I have the skills of a 14-year-old or thereabouts. I’m still learning this whole thing. So I’m at the gym last week and shave after my shower. It was my first shave at the gym. I had my rig all set up, and a minute or two into the enterprise, two other guys walk in, plop down their shaving kits, and go to it. They finished well before I did and walked away. While I’m not normally a “compare yourself to other men at the gym” kind of guy, I somehow found this episode slightly humiliating. So I decided to try and shave faster.

You can guess what happened. Last evening as some friends arrived to go out to dinner, I hadn’t quite finished bleeding profusely from a giant gash in my chin.

At least now I know how it is that men come to have giant nicks in their chins from time to time.

To add insult to injury, I felt compelled to explain to them (none of whom had ever seen me with a beard) that I had only been clean shaven for a few months and was still figuring it all out.

No Brown M&Ms

I haven’t blogged much about CASBS, which I will do. But part of the deal (for now) is that each fellow delivers a lecture. We meet once a week. Yesterday was my day. I’ve given a few talks this year and each one has been an experiment to see what my voice will handle and how I can figure out a mode of delivery. This seems so simple, but given that my performance style was very much structured around a level of power in my voice that is simply not possible to reproduce now that I only have one vocal cord, I’ve been wandering in the wilderness a bit.

For now, I think I’ve finally found the solution:

1. Sit down. I have a lot of adrenaline pumping when I deliver a talk. Sitting forces me to, well, sit still rather than pace, and focus on my breath and delivery.

2. Don’t read. I’d originally though reading would be a good idea because it would allow me to focus on the mechanics of speaking. But that’s not actually true. Working from a script means bending my speech to written language. So yesterday I used notes and did a more “torture by powerpoint”* type of presentation.

3. Use the speech amp instead of a mic. The key here is that I’m wearing it on my head, rather than on my lapel, or leaning into a stationary mic. I guess if I had a nice strong mic on the table that would be one thing, but lapel mics and the like don’t give me the same feedback (the good kind), and I’ve had several podium mics this year that wouldn’t cooperate. Anyway, it’s sort of like walking with a cane instead of hanging onto the guardrail.

4. Know the material cold. For formal presentations, at least, I need to go in absolutely sure of what I want to say and how I want to say it. I don’t actually have to be finished with the project, but I have to be very comfortable with what I want to say. That way, I can focus on the delivery but in my own voice. How this will work with work in progress or things I haven’t been working on for seven years has yet to be seen.

All this means that I will be a more demanding guest speaker when people invite me to give talks. Which is fine–I already am. Now I just know what to ask for.

I also wonder whether this means I will be delivering large lecture courses while seated and how that will work. I have a year to figure that out and work on my delivery more. And to see my speech therapist in Montreal. We shall see.

—–

In other news, the mp3 ms is with my research assistant who is editing it. Then it goes back to Duke. I’ve got a few loose ends (acknowledgments) but sometime in April it will be off my desk.

* “Torture by powerpoint” was coined by Jenny Burman to describe the insipid practice of putting up slides and then reading them to the audience with additional content. I didn’t actually do that, but I did have a few bullet points.

Speech Impairment: in the news, in the booth, at some parties, and in situ

Yesterday’s New York Times had a story on sports figures with temporary vocal cord paralysis–announcers Joe Buck and Dick Vitale, and referee Mike Pereira. The piece more or less exactly describes my own difficulties. Here’s Pereira talking about himself and Buck:

“You have to reach more into your diaphragm to get the vocal cords to work,” he said. “When Joe reaches deeper, he has movement; he can get near his voice. I’d reach to my core to put out what people called a loud whisper. I remember being exhausted by the end of the day to get people to hear me.”

Buck, meanwhile, has to modulate his voice:

“Still, his voice strains when he becomes excited or tries to raise his volume quickly. When Prince Fielder and Adrian Gonzalez hit home runs at last month’s All-Star Game, Buck could barely be heard over the crowd. His call of a touchdown to the Pittsburgh Steelers’ Hines Ward during a N.F.L. preseason game last week was perfunctory, as if he were a quiet Pat Summerall.”

Although all the people in the story had recovered or expected to recover (I don’t), the problems are all too familiar. Where I used to be able to raise my voice, now my voice just cracks up if I push it too much. And there’s still a too much before “too much.” After Saturday’s two parties, and even with the speech amp around my neck, I was exhausted from simply trying to make myself heard. It sounds like I am speaking at normal volume, but inside, I’m yelling.

Part of it is on me, to let the excitement go and allow the amplifier to do the work. But I also find more and more that I avoid loud places when I can. Intellectually, I remain critical of the “noise is bad for us” line of argument, whether we are talking about public places, private homes, or aesthetics. But experientially a noisy room exerts a kind of weight on my vocal system. It does that to everyone, but to use a phrase from Tobin Seibers, my speech system–the voice, mouth, lungs, diaphragm–is considerably more tender. The air is thick with sound, and my speech swims more slowly, pulling my breath with it. I can literally talk so hard that I become light headed. I haven’t talked to the point of passing out since March 2010, when I was still learning, but I sometimes surprise myself by getting too close to the edge.

In any event, like the announcers, I worry about my voice as a significant source of my livelihood. I have been developing a kind of “rider” for talks I give, as experimentation has yielded some insights. But I wonder what it will be like to deliver lectures to big classes. Happily, this year I have seminars. And the mechanics of speech will be for another post or series of them.

In the meantime, and regardless of the game, you can bet I will be listening with interest to Buck’s first football call on the 11th.

[Insert reflexive comment about “why do we need celebrities to validate our disabilities?” here.]

Source: Thyroid Cancer Superbon

September is Thyroid Cancer Awareness Month

More information here and here.

It’s good that this is the month to be aware of thyroid cancer because boy, am I sure aware of it. After a year away, in which I could effectively spend most of my time living in denial, I’m back in the medical system with lots of followup appointments and tests. I haven’t done a lot of public post-cancer reflection on this blog, other than a brief stint in February, when I was working through my own struggles with the memory of lost time (start here and hit “next” for the series if you missed it).

But now I’m back and so it’s appointment after appointment. Mostly my doctors tell me I look good, which I mostly do since I’ve managed to achieve something approximating the expected sabbatical weight loss. A year later I have some lingering complications, and complications to my complications. Most of them are pretty minor when I catalog them: I learned in visiting with my radiation oncologists that the sudden, frequent and painful neck spasms I’ve been having since May are likely the result of scarred muscle from the external beam radiation treatment (as he put it, “we have to put the radiation somewhere, and it’s better than your bones). Massage and hopefully physical therapy will help with that but I have no idea what the long term prognosis is. A hernia I first experienced after waking from my 4-day-twilight in February 2010 bothers me from time to time. The worst flare up involved a car, bubble tea, coughing and laughing. And there’s other stuff I will leave off the blog for now. But of course the big thing is the voice.

People tell me my voice sounds fine, and if it’s not too loud around, I suppose it does. It resembles the way my voice used to sound. But ultimately, it’s not the sound of the voice (well, it is its sound in that people say “what?” to me a lot more and computers and phone menus don’t recognize my voice as a voice). AS I said in my August 29th entry, it’s the experience and the mechanics of speaking. I have been waiting to try and give a fuller description of what it is like to talk now. Wednesday I have an appointment with a laryngologist that should yield some insights. Not that my audience is waiting with baited breath or anything, but I will finally start to deliver on the impaired vocal phenomenology then.

Voice Lift: Why I Shouldn’t Have Been So Critical of All The Plastic Surgery in Los Angeles

During our six weeks in LA, we saw a LOT of people who had plastic surgery. At least in the wealthier parts of town, it is part of the culture, and one can talk casually of having “work done.” For example, a friend of ours who is 50, newly single, and drop-dead gorgeous was asked by her date whether she was “going to have her eyes done.” I don’t think he got a second date.

So imagine my surprise yesterday when I went to see a laryngologist and discussed my options. He told me that he could do a procedure that would inject a liquid that would “plump up” my vocal cord, thereby making it easier for me to bring them together. Over time the body absorbs it, so you have to do it repeatedly. It is a face lift for my voice, and indeed they are starting to cross over from restorative cases like mine to cosmetic surgery.

There is a more permanent procedure where they place a gore-tex stint in your throat to move your vocal cord over. I am, however, not a good candidate because they would have to cut through radiated skin. Which is too bad not only because the voice-lift is a temporary solution (well, like a pedicure is temporary, I guess) but because it would have been fun to know I was carrying around a little piece of Vancouver in my throat. As a bonus, you’re awake for the surgery and the doctor adjusts it and you talk. That would be an amazing experience. But I’m happy not to take any unnecessary chances with my neck. The spasms and weird twitches are enough, thanks.

Voice Lift Review: Or, Laryngology Phenomenology (not really, but it rhymes)

Well, I don’t really recommend the operation for a good time (graphic details below the line for the curious) but it certainly has had an effect on my voice. It sounds different and it’s easier to talk. I would definitely do it again. My friend Derek says that before my voice sounded like my old voice but with a cold, now my voice sounds like I have a different kind of cold. It’s still a little gravelly–possibly because I’m sore–since the laryngologist had to poke my vocal cord several times. But I can raise it a little and it takes a lot less effort to talk. I don’t feel light headed as easily. I still needed the speech amp at the Dirty Beaches show last night, but I didn’t have to work as hard. If I strained, it tickled, rather than felt like my breath was rushing out of me. This should be good for about three months. they’re hoping to get new goo from the US to inject next time that will last for six. I don’t think either the doctor or I would relish doing the operation more than once.

Oh, and on the speech amp: I still haven’t totally adjusted to it socially. I mean, I just use it but I do feel somewhat self conscious. Though it’s kind of ridiculous. Take last night. I’m in a room full of painfully decked out hipsters with all their little fashion details worked out just so; that perfect mix of conformity and sanctioned eccentricity. From a viewpoint above the room, one guy with a transistor radio around his neck and wearing a mic is just another hipster with a lame quirk.

Or not. Gory stuff below the line. Don’t say you weren’t warned.

Okay, so this is what happens when you get an injection medialization laryngoplasty, or at least when I did. This all happened in the ENT wing of Montreal general in a normal doctor-meets-patient ENT room.

I sit in the patient chair. The doctor makes it recline and has me stretch out my neck (with a towel behind me for support). Some of the usual stuff happens. They spray anaesthetic up my nose (this always happens) and then follow it up with a fiber optic camera (called “scoping”) which goes up my nose and down my throat so my vocal cords are on a big screen. Before the camera goes in, they spray stuff down my throat to numb it. This is especially difficult because I have a serious gag reflex, it turns out. It takes a few tries, and to everyone’s surprise at one point I puke a little bit. Don’t worry, that never happens, except to me! If you’re worried, have them put a towel over you or bring a change of shirt (I was able to cover up so nobody knew afterward). Anyway, there’s lots of injecting and freezing.

Once everything is numb, they insert the scope (the resident handled that part) and the doctor goes in with the needle through the front of my neck. There a tiny needle hole but I can’t get a good picture to show you (I tried) and it’s going to heal quickly. Anyway, at this point there is a lot of poking around, as the doctor watches what he’s doing on the screen and tries to hit the right parts of my vocal cord. it’s hard. The shit hurts. It also just doesn’t feel right. But I’m committed. I’m trying just to breathe through my nose and not think about what’s going on, and especially not to swallow, which is difficult because apart from the poking it also tickles. The needle gets bent. He gets some in and we take a break. Then everyone goes in again. I need some extra “freezing” as one part of my nose is getting more sensitive. The second time seems easier for all involved.

I can immediately feel it is easier to talk, though my voice sounds silly and hoarse. I rest for 15 minutes (I brought a tenure file to read through–don’t worry, it wasn’t yours!) and then head to the bathroom, clean up and walk to the metro. I have been instructed to talk a lot, and so I change my plans for the day to do stuff that involves talking with people.

I wish I’d started the pain killers while I was still numb, but it’s just a general soreness. Nothing too serious.

So now I understand a little bit of what some women go through for their idea of beauty (not mine, but whatever). All I can say is that if you’re really committed, it seems 100% worth it.

Cancer Crawl, 10 Oct 2011

And now, another post about cancer!

This is one of those “good news/bad news” situations.

I confess to some unwarranted cockiness in the cancer department upon returning from California. As Carrie put it, we thought we’d “beaten it” for now. I returned from sabbatical many pounds lighter and a few sizes smaller than I’d left, and in many ways in the best health I’d been in at least since I’d started administrating in 2005, apart from some lingering issues noted in an earlier post.

Returning, though, meant going back into the Canadian medical system, which meant seeing all the various people on the team that follows me, as well as other doctors and specialists whom I hadn’t seen in a year or in some cases almost two years. That took a lot of time, but then, I got a call on the morning of September 14th to “come see my endocrinologist” the next morning. At that point, I was still in cocky mode so I figured someone had just cancelled and I was going to get to see him sooner (I didn’t realize there is now a six month waiting time when I made the appointment*). Then I heard from my ENT surgeon–could I stop by after class that day? That’s when I knew there was bad news. They never call you with good news.

So, the bad news: you know those spots in my lungs that they were tracking in 2009-10? Well, two had grown a little, and a new one appeared. They’re not big but big enough the freak out doctors. Which of course freaked me out.

Also, it’s too fucking soon. I only had a year off. That’s it. But unlike certain so-called Christians who have morphed their email harangues from critiques of MUNACA to suggestions that I should suffer to prove my devotion to the cause, I take a more existential position on suffering. It is essentially meaningless. And shitty. And to be avoided (apart from things like the pain that tells you to take your hand off a hot stove and grief, which as an adjunct of death and finitude, is unavoidable).

Now that we’ve got existentialism covered, we move to crises of ontology and epistemology. Nobody knows what the stuff in my lungs is. The spots that haven’t changed are probably something else. Those that have changed are probably metastasized thyroid cancer. At least that’s what they look like. The PET scan showed two cases where the granulomas took up the radioactive material injected into me, which basically means they were hungry for carbs, which is how cancer behaves. But there’s some contradictory evidence: the tumor marker in my blood is undetectable, which suggests that it isn’t thyroid cancer. It’s also not likely to be lung cancer, both because I have no risk factors for that (other than a family member that had it) and because the pattern is metastatic, not primary. Or so they tell me. It could also be some kind of lung fungus or the leftovers thereof, and as a MD friend told me in New York, “most people have stuff in their lungs.”

The doctors’ first response was to want to be certain before following a course of treatment. Modern medicine is algorithmic, which means that if you don’t know which one to use you’re in a lot of trouble, and I think this seemed like a crisis, at least to some of them. But there’s a cost to certainty: surgery. Because of the location and size of the granulomas, there is really not much chance of success of a needle biopsy. So the next option is a surgical biopsy of the lung, which doesn’t involved cracking open my check, but it’s pretty invasive, introduces lots of risks and probably would lead to a long recovery. The thing is, even if they determined it was thyroid cancer, the options for treatment are limited: they could give me another dose of radioactive iodine; they could put me on some awful sounding regimen called “soft chemo” which is a lifelong thing. But you can’t cut it out. And regular chemo or external beam radiation isn’t indicated.

Once I learned about all this, I was very unenthusiastic about exploratory surgery to confirm a diagnosis that might lead to people doing nothing. Happily, the tumor board met a little over a week ago and determined that the risks of surgery were not worth the benefits of certainty. I spoke with my endocrinologist on Friday who told me that they’re simply going to watch it every six months and decide what to do from there.

I would have blogged about this sooner, but it was bad enough not to know without having to explain to everyone I saw that I still didn’t know. It’s been a tough month between seeing doctors almost every non teaching day in a four week period (or so it felt) and the heightened anxiety and sleep deprivation that comes from doctors calling me in and telling me something was going to have to be done.

All that is to say, the good news is that nothing’s happening now, but I am left with some serious long-term uncertainty. The endo said “we might need to go in in a year’s time, or in 10 years’ time, or never.” For now, I feel relieved, but still a little edgy. We’ll see if it settles over time. No more talk of “having beaten it” though, even in jest. This is a chronic condition and a fact of life from here on out. Which is all the doctors have ever said to me.

I was joking with a friend this weekend that my best strategy going forward is denial. Which on an everyday basis (apart from being a properly compliant patient with regard to tests and such) probably is my best strategy at some level.

So for Canadian thanksgiving, I guess I get to be thankful for the healthcare system and the support of friends and family, and perhaps too for the moment, for the ambiguity of lung spots. . . .

Other good news: after taking about a week to settle, the voice lift is great. My voice sounds better and it is easier to speak.


* Note to Americans: don’t be smug about wait times. It was 8 months to see a dermatologist when I lived in Pittsburgh.

A “Tipping Point” Just Happened Inside My Throat

Well, that was fun. As predicted in October, the voice lift I had was temporary, and it’s pretty much gone now as far as I can tell. I’ve noticed it in my voice, which has lost strength, low end and is more hoarse (the guy at our local fruiterie asked if I had a cold as I was checking out the broccoli and mozzarella last night). More like what it was in the early fall. But the place I really notice–and miss–is swallowing. After paralysis, I relearned to swallow. Then I relearned again after the voice lift but it was much easier. Now I am relearning my original relearning. Especially not fun with pills and, oddly, long pasta noodles.

I phoned ENT at the General yesterday for my next one. I don’t have a date yet, but this time, I will be ready.

Public Speaking 101b

Okay, so I’ve been going to the speech therapist to see if there’s a way I can get back to giving talks while standing without my head spinning after a few minutes. Last time we worked on breathing, which helps but not enough.

Today, I learned that I still use volume for verbal emphasis. Which is stupid because my voice just breaks up and it’s as if my breath is leaking out of my head, and my voice doesn’t get a whole lot louder. If I switch to pitch, I do a lot better. But it sounds a lot easier than it actually is. You don’t just will yourself into another style. I’m not really a sing-songy talker. Also? I try and avoid that Canadian guy uptalking thing?

Not being able to “turn it up” is also a problem at work and in my social ife. People get conversational space by speaking up — whether we’re talking about dinner parties or meetings. I used to be right at home in that milieu but now I can’t do that, even though my voice “sounds” normal. So when a person facilitating a discussion in a formal setting like a meeting says “let’s just be cool and talk” it’s actually a real problem for me. So I have taken to raising my hand even when nobody else does. It sort of works. As for dinner parties, there have been a few nights where I just wear out and listen instead of talking.

Other news forthcoming.

LID Day 1 + Bureaucracy, not in that order

And we’re back to cancer blogging. Yesterday I spent a couple hours at the Jewish General getting my records in order. I forgot how much bureaucracy there is to being a patient: Keeping files, updating files, moving between offices, the whole gig. Though I have to say that prior experience has meant I know how to work it, at least at JGH. Everyone was super helpful and nice.

Of particular importance was getting some forms to Manulife, my private insurer. In Quebec, there is a public system but private insurance covers lots of things, some of them not covered by the public system and some of them covered but foisted onto private insurers when possible.

As part of my radioactive iodine treatment, I need my thyroid hormones to be low enough for it to work. There are two ways to do this: 1) become hypothyroid. This involves stopping my synthetic hormone drugs for about six weeks and making myself very sick, soporific, and generally living in a miserable haze and being unable to work or do much of anything. 2) receive two shots of thyrogen, 24 and 48 hours before radioactive iodine respectively. You can guess which is preferable. Thyrogen costs about $1600 for a course of dosage and Manulife requires pre-approval.

You can guess what happens next. I have my Dr’s office fill out the forms and fax them to Manulife (and have the receipt to prove it). That was in August. Last week I call to ask why I haven’t heard back. They tell me they “never” received it. So I have to get the documents again, scan and email them, and find a responsible person. Luckily I did. This is the third time in my experience Manulife has “lost” a claim (or part of a claim) for an expensive treatment for which they require prior approval. What conclusion am I supposed to draw?

Also, for the record, I contracted McGill Benefits to ask for an advocate with Manulife, they refereed me to MAUT (aka, our fake faculty association), who promise me they will get back to me, just like they did in August. I’m still waiting.

Of course if worse come to worse, I will just pay out of pocket. It’s just that I shouldn’t have to, and I shouldn’t have to chase down my insurer on top of staying on top of various tests and other medical arrangements in advance of my treatment.

LID Day 1: I am now on my low-iodine diet, which requires that I (effectively) consume nothing prepared by anyone else. If you’re curious about how it works, Thyroid Cancer Canada has a fresh and up to date brochure, based on the latest science. The short version: for a vegetarian, it’s vegan, no soy, no dairy (duh), nothing from the sea, and nothing high in iodine (like iodized salt, which is in everything). But non-iodized salt is ok, so I can go with that.

My first LID meal was lunch, and involved home-made hummus (including boiling the chickpeas ourselves, with some baking soda following the Ottolenghi recipe; though Carrie’s hummus skills are quite formidable at this point) and toast from no-knead bread (half wheat, half unbleached white flour). Tonight is a salad and leftovers from a paella based on Mark Bittman’s instructions in How to Cook Everything Vegetarian, with short grain brown rice, a giant cauliflower from the Marché Jean-Talon, onion, garlic and bell peppers. And way more saffron than he suggests. In addition to the dry chickpeas, I had to track down salt-free vegetarian bouillon (thank you JTM Vrac), and vegan margarine for the toast (ok, not amazing, thank you Carrie for finding it at Loblaw’s).

Vegetarian Low Iodine Diet Redux [LID]: Week 1

It’s Sunday. Time to watch football and cook a lot.

Here are some vegan/low iodine things we’ve been making. Recipe links are posted when available. I’m too lazy to type things out if they’re not already typed out online or in our electronic recipe book already (there’s a lot of copy/paste in this post, but it’ll be new to you). Also, I had planned to do this daily but that’s too much. So instead you get massive weekly updates, like this one.

When on the low-iodine diet you can either make everything yourself, or eat boringly. I lean toward the make everything myself because it’s frankly enough unpleasantness to put a giant dose of radioactive material in my body at the end of this. Why shouldn’t I have a little fun now? The other thing is even if it’s boring, I still have to plan it out.

Dinner #1: Stew and sides. We made this Friday night.

–>Bulgarian Red Pepper Stew from Sundays at the Moosewood. We served it to guests and got another meal out of it.

Normally you have it with sour cream or yogurt. Since I can’t do that right now, I went for cashew cream courtesy of the Post Punk Kitchen and Isa Does It.

Soak 1 cup cashews in a bunch of water overnight. Drain. Put in the blender and puree with two cups water, a little fresh lemon juice and salt.

Serve the stew and put just a small spoonful of the cream into the bowl and you get some nice creaminess. I don’t find cashew cream all that good by itself but it works to add texture.

Our side was roasted brussels sprouts and cauliflower (also made a ton and ate leftovers for another meal):

Slice brussels sprouts in half

Cut cauliflower into florets

toss with olive oil and salt

roast at 425 degrees about 45 minutes or until the sprouts are melty.

I also made another no-knead bread, this time with 1 cup each of white, wheat and rye flour.

Coconut Milk Ice Cream

For LID people, you need to check the label for additives. The kind I got was organic with guar gum as the thickener. That’s LID-approved.

Two cans coconut milk

1t vanilla

1/2-3/4 cup sugar (to taste)

Put all the ingredients in a blender. Blend. Put blender jar in fridge for a couple hours. Then freeze it in your ice cream maker. We served it with berries. You could also flavour it however you like. Tonight we will try it with cardamom and rose water if we have it (to go with the Indian).

–>Corn muffins from Isa Does It (on a quick look online I don’t see a similar recipe). We both loved them for breakfast this morning. We had to substitute Yu rice milk for soy milk since YU is the only LID approved non-dairy milk in Canada (unless we made it ourselves).

–>Tacos (aka “breakfast tacos” aka regular tacos, but eaten at different hours than usual)

Fresh tortillas with no salt in them are fair game. Then it’s off to the races. I used the following veggies but any will do:

Onions

Garlic

Poblano Peppers (tons, they’re from the market)

Nance Carrots

I stir-fry them in oil, and add chill powder (we just happen to have a little free jar from Penzy’s that doesn’t have salt in it–otherwise I was prepared to roast and grind peppers), cumin, salt, pepper, and a little paprika. I do the spices visually. A big dusting of chill powder, and less of everything else to add a few “notes” to the flavour.

Then I added some seitan, which is the only veggie protein you can have on the low iodine diet. (Lentils are also an option, but there are lentils in the stew and lentils in the Indian, and so I wanted a break.)

Tacos were eaten for lunch Sunday and then will be rotated across different meals as the inspiration strikes.

I took the leftover cashew cream and made an experimental “nacho sauce” for the veggie tacos. It’s based on this recipe, except I substituted mustard powder for miso since I can’t have miso (homemade mustard would have been better but was too much work). I skipped all the veggies except for garlic, but I did put in a dried chipotle. The result is not exactly like nacho cheese sauce and not amazingly delicious straight, perhaps because I didn’t follow directions properly.I found it a bit strongly flavoured as a background to the tacos and not in a good way–I think I might just whip up more regular cashew cream instead, and/or make pickled onions since I can’t put on a vinegar based hot sauce.

Baked Seitan (adapted from Cooking with Seitan, a cookbook I bought mainly because the title is fun to say out loud)

(Skip this if you’re gluten free. This would be a bad thing to eat in that case.)

Preheat oven to 400 degrees.

2 cups gluten flour (you can make your own but it’s a hassle)

1 cup veggie stock (I used unsalted), cooled

1 cup rice milk (soy or whatever ok if you’re not LIDing)

1/2 t each garlic powder, dried onions, salt

Stir up the dry ingredients in a bowl, stir in the wet. The dough should be spongy and not too sticky. Roll into a log with about 3″ in diameter. Slice into 1/2″ cutlets. Lay them out on an oiled baking sheet. Bake for 10 minutes, oil the tops, flip and bake 10-15 minutes more. Seitan cutlets will get a bit puffy. This recipe is pretty bland but the texture is good and since I want to use them in Mexican and other recipes, I didn’t want to flavour it one way or another. For the tacos, I sliced the cutlets thin, added them in right before the veggies were done, dumped in all the spices and about half a cup of water with the heat on high and the seitan soaked up the flavour. Normally, you’d do something else with the cutlets, like simmer them in broth or stuff them.

–>Indian dinner This will make tons of good leftovers for the week that can be reheated in a few minutes. Key when you’ve got lots of late afternoon meetings like I do.

Biryani (adapted from Neelam Batra’s book)

6 medium cloves garlic, crushed (lots)

1-2” piece fresh ginger, minced (lots)

1/2 c fresh cilantro, chopped

1c tomatoes, chopped

1 large onion, chopped

6 or more cups fresh vegetables (carrot, cauliflower, bell pepper, frozen peas[leave out the frozen peas for LID], etc) — we got a beautiful cauliflower from the market, and have some left over broccoli and string beans. And some more bell peppers and carrots.

1 cake tempeh, cubed [skip if on LID–no soy allowed!–we made the lentils below for protein instead]

2t garam masala [for LID, you need a masala without salt–we have a rose masala with no salt that we have been wanting to try]

2t ground cumin

1t crushed red pepper

1-1.5t salt

½-1t turmeric

oil for stir frying (I recommend coconut oil)

+

2 cups brown basmati rice

4 cups water

5 black cardamom pods, lightly pounded

1 cinnamon stick

1.5t cumin seeds

1t salt

oil

Preheat oven to 350 degrees.

Heat oil in saucepan big enough to hold all the rice and water. When hot, add cinnamon stick, cumin seeds, cardamom pods. When they pop after a few seconds, stir in rice and water, crack a little pepper in (or use a few whole peppercorns if you dare), bring to boil, then simmer for 45 minutes or until done. Rice can be a little wet when it’s done.

In a very large, oven-safe dutch oven, stir-fry vegetables and tempeh in the usual order (hardest to softest), add spices, add tomatoes and coriander at the end and cook a few minutes more. Stir in cooked rice, put in the oven for 15 minutes. (or transfer to baking dish if you don’t have anything that works on the stove and in the oven).

Watch out for cardamom pods and cinnamon stick when eating.

To go with it, we made the everyday dal from Curries Without Worries, using red lentils. (this is the only adaptation I’ve found online, we do it a little differently)

–> Dinner if necessary. Stir fry as yet to be determined. With rice. Quick and easy, veggies available at the corner on the way out of the metro and left over seitan. As long as it’s not soy-based we’re good. Perhaps Carrie or I will make this:

Carrie calls this “Jon’s Dry Coconut Curry Delight” which means, when she makes it, I like to call it “Carrie’s Jon’s Dry Coconut Curry Delight”

1 large onion

1 leek

1 sweet bell pepper

2 cans mock duck (or 1 large cake tempeh or tofu) [for LID, it would have to be home-made seitan or just put lentils in the rice for protein]

½ cup desiccated coconut

oil for stir-frying (coconut recommended)

1.5 tsp black mustard seeds

1.5 tsp cumin seeds

¼- ½ tsp asafetida

1 dried hot chili or ½ tsp red pepper flakes or to taste

2 tsp good curry power [LID: make sure it’s a curry powder without added salt–and hey, we have fresh curry leaves in the freezer so we might try that]

½ tsp salt or to taste

Slice onion and leek thin, chop the bell pepper small and cut the protein as you see fit.

Heat the oil in a large skillet. When hot, dump in the mustard and cumin seeds. Once they start to pop (which will be almost immediately if the pan is hot; be ready), add the onion, leek and bell pepper. Sautee until almost done. Add the protein and coconut. Then add the spices and salt to taste. Serve over rice. Goes well with fruity hot sauce and yogurt if you’re not on the LID.

Other notes for LID people finding this via web search:

For lunches at work, I’m going to bring in leftovers some days and other days eat a variety of portables: we’ve got a metric ton of hummus and acres of carrots, fresh fruit, some nut bars from the corners with no salt in them, more muffins, and the like. I’ll also do PBJ at least once, since that’s easy, filling, functional, and portable.

“With over a hundred millicuries, there’s no fun and games”

lead capsule

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.


http://sterneworks.org/Geiger.m4a

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.

Day 2: Fun and Games With Microsieverts

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:


http://sterneworks.org/radioactive2.mp3

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:

http://sterneworks.org/radioactive3.mp3

So yes, there’s some kind of art project in this. Perhaps a couple more cancerscapes.

Radioactivity: Day 3

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.


http://sterneworks.org/Geiger3.mp3

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….

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.

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.

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….

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.

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.

Thanksgiving update

It’s American thanksgiving! I’m thankful for my wonderful family and friends (some of whom I will see tonight at a potluck), KITTENS and CARRIE, great colleagues and students, as well as for the kindness of strangers. Since I last posted, I got a little information on Inspire.com but the ThyCa people managed to manually add me to the advanced thyroid cancer listserv, where I got much more good information (including help with a list of questions for the doctor today). I am also grateful for socialized medicine and the fact that I like in a place where there are people who do research on thyroid cancer (and that the cancer wings of the Jewish are better funded and more functional than some others).

So, onto that.

I went to the medical oncologist today. The discussion was serious but inconclusive. There is another CT scan in my future and I’ll be talking with him again in a couple weeks while he gathers more information. Here’s what we know: My thyroglobulin (that’s a tumour marker in the blood) is down from 57.5 to 40.2 after the radioactive iodine. The CT scan report is woefully vague–it says there is no visible update but does not describe the size of the lesions in my lungs. So there will be another CT scan. Also, there is some confusion about prior RAI uptake in my lungs in 2010. So he will talk with my endocrinologist, we meet again in two weeks, and the CT scan happens thereafter at which point we come up with a program for treatment or non-treatment.

The options are:

1. Exploratory lung surgery to get an absolutely firm diagnosis. This isn’t likely to be necessary as everyone is pretty certain it’s thyroid cancer. If it weren’t thyroid cancer, there would be a whole other set of questions.

2. More watchful waiting, which means regular CT scans and followups.

3. Medical oncology treatment with tyrosine-kinase inhibitors, which can slow or stop the growth of metastatic thyroid cancer but do not reverse it.

I’ll know more in two weeks, but even then, it will probably be a bit longer before we’re certain how this particular episode will shake out.

I got what I wanted, sort of

So after having three (yes 3) of my doctoral students defend their dissertations Monday and Tuesday, my reward was to spend yesterday and today getting tests and doctoring. The good news is that they have decided to go back to watchful waiting for now. I will have another full body scan in three months (this time including brain) and after that, they will probably break it up into various different kinds of scans for different body parts. But I have to say meetings with a medical oncologist are nothing if not sobering. Right now the disease isn’t doing much of anything. It might continue to not do much of anything, but once it starts “trying to grow” it can move very fast and go from a slow-growing don’t worry about it cancer, to the standard aggressive, take over your body, lights out kind of cancer. And I’m now fully in their system, which is quite functional and efficient, but I’d definitely not be at the place I’m obviously at in triage. It means they think it’s serious.

Now more of the good news. The oncologist said “I’m not impressed by your tumour.” Music to my ears. The CT scan report shows my lung nodules are more or less unchanged since July. The big one was measured a little smaller, but within the realm of human error, so I don’t think the radioactive iodine had any effect. My thyroglobulin is down (that’s the tumour marker in my blood), which is very good.

They also assigned me a primary care doctor (oh the irony, I now have two and many people in Quebec have none), who specializes in young adult cancer patients. Because that’s my category.

2014 in Review

It’s been a really complicated year–some major highs and lows. We’ve spent the last couple days on unfinished business: seeing Laura Poitras’ gripping CITIZEN FOUR (highly recommended), doing our donations for the year, and it looks like I am actually going to get an article revised that I thought I might not be able to do.

2014’s highs included a semester at Microsoft Research and a month at Folger Shakespeare library, new friends and reconnecting with old ones, lots of opportunities to do original research of both the archival and ethnographic kinds, a really amazing graduate seminar and conference, five PhD students finishing, lots of great trips and talks and meeting new colleagues at distant places, and especially our first trip to Sweden. Also 2014 was the year I performed solo electronic music for the first two times (thank you Boston!), came out as a member of a country band, discovered the joys of modular synthesis, and bought an electric guitar and took a few lessons (I’m terrible but it was fun). The kittens have been a constant happy obsession since they arrived in August.

Lows included being apart from Carrie for weeks at a time, including when our 19-year old cat Ya-Ya died, and later when, her grandmother passed. My own medical adventures have been a bit of an emotional roller coaster and I’m still digesting it all. Carrie’s dad’s hospital visit was a bit of a scare and yesterday, I just learned of the passing of one of my best friends from graduate school, Greg Dimitriadis. Mortality is all around.

If I had the energy, I’d write a longer blog post (especially about Greg), but this will do for now. It’s okay by me if 2015 is a little less eventful.

Medical Research as Ideology: Cancer is Luck

A new Johns Hopkins study finds “luck” as a major cause of cancer.

This is a great example of how medical research turns social conditions into inevitability and writes ideology (the order of things is given and unchangeable) as if it were science.

While there is talk of personal responsibility as a possible cause for cancer (“behaviours”), there is no talk of social responsibility (which might have something to do with changes in the environment over the last few generations). The only known cause of thyroid cancer is radiation. Other cancers are well known to be environmentally caused. So if, as the article says, we know cancer is caused by a combination of “luck, environment and heredity,” and the luck is more important than we thought (duh), then the logical conclusion is that if we are concerned about the spread of cancer, we ought to be thinking about the environment.

Sure, I’m all for fatalism as an explanation for why I have cancer and the person who experienced the same conditions doesn’t. But since we know certain cancers –including mine–are greatly increasing in the population overall (at least in the US and Canada, I don’t know worldwide statistics), we might actually want to go looking for explanations and solutions.

More on Cancer, Luck, and Behavioural causes

A day later, I’ve been pointed to some nice writings but scientists and statisticians. See here: http://pb204.blogspot.co.uk/2015/01/science-by-press-release.html

A few things become clear: 1) the coverage is of the press release, not the actual paper but 2) there are still major problems in the assumptions of the paper. The “luck” appears to be mostly an artifact of the press release and the abstract, though the analysis remains flawed. The lack of social and environmental analysis is definitely a property of the paper. And of course most of the journalists reporting it are innumerate to boot.

Statsguy has a wonderful critique of the article, but winds up writing about lifestyle as a cause for cancer, and I’m sorry, without environment and social analysis, that’s just bullshit. Yes, HPV causes cervical cancer and smoking causes cancer, but what causes smoking? And neither of those things are good explanations for breast or thyroid cancer, whose increasing prevalence appear to result from a combination of changes in diagnostic technology and practice and environmental causes.

So it would be wrong to say cancer in general is “behaviourally” caused. Some cancers are behaviourally caused, though even there, how you could say smoking causes cancer and not also look at policies that promote the tobacco industry around the world, I don’t know. Ditto for the HPV vaccine. If HPV causes cervical cancer and the HPV vaccine prevents the cancer, then it suggests to me the important behaviour is vaccination, not sexual activity.

There’s a whole layer of moralizing that goes on top of the behaviour talk–which is typical of American (and I’m assuming some other) medical culture. But that will have to be for another post.

Health Update: Suspended Attention

After last November and December’s adventures in cancer world, it isn’t surprising that I get a lot of questions about my health and emails wishing me well, often based on incomplete information. Of course since I have incomplete information, that’s no wonder. So here’s some slightly more complete information.

We’re back to watch and wait. Ideally, forever. But maybe not.

When I saw my endocrinologist before I left for India on Jan 9th, he read my situation a little differently than the oncologist, as in he thinks I’m in a different class of patient (and was unworried enough to want to talk about teaching evaluations, which I took as a very good sign).

But both of them are singing the same tune in terms of next steps. In a couple months (give or take) I’ll have a scan that will give us a sense of what’s happened since the “new” baseline set in December, and then we’ll do partial scans throughout the year. What they are looking for is when the cancer starts “trying to grow” at a considerably faster rate than it is right now. When that happens, the slow-growing thyroid cancer is trying to start behaving like a more aggressive cancer, so the drugs start. Once I’m on drugs, I’m probably on drugs forever. At least with the medicine at where it is at today. The thing is that “trying to grow” phase could come soon, or it could come in 10 years or even later. And there are no other experimental treatments to try right now (the lithium/radioactive iodine was their best shot).

So now we pay attention every few months, and otherwise we suspend attention. “Watchful waiting” it’s called, but I like to think of it as blissful denial punctuated by periods of intense ambiguity.

More Suspended Attention

Since last fall, I’ve been on an every three months regime of getting scanned. Two have been chest and abdomen, other was just my lungs. They are tracking the speed of spots in my lungs, looking for anything to get bigger. The last scan, done at the end of June, showed my largest lesion at about 2cm diameter, and growing a couple mm every 3 months. It showed the other ones “unchanged.” This is too slow to be alarming, but they want to track it, along with a tumor marker in my blood.

One possibility is that they will shoot a beam of radiation at the big lesion if it’s growing faster than everything else. Another is that they’ll do nothing until they see a rapid increase in the pace of growth.

What all this means is that I’ve gone into a kind of cycle: the best parts of the year are between the time my doctor finishing the appointment where he says “we’ll do another scan in 3 months” and getting the scan in three months. Then there’s the waiting part in-between, which is less fun.