Super Bon!

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.

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.

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

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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

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.

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.