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.

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.

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.

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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.

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.

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.

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

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.