Landed, but not grounded

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.

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.

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.

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

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.

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.

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.

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.

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.

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!