#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

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

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

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.

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.

More Than a Few Words on the Form of Music

This week I received a CD from Owen Chapman, my colleague at Concordia. Entitled Calling the Voice-O-Graph, it is an album of sample-based music though he also plays some of the parts himself. If you click the link to the online part of the project, you’ll see the idea behind it is pretty interesting: free music in exchange for dialogue, or more accurately, commentary. That works well when you don’t have to sell your wares to get by. Owen’s attitude toward the record is like my attitude toward the articles in the “text” section of Sterneworks. We’re both more concerned about an audience than about revenue since we both draw a salary by other means (thank you, Canadian taxpayers). I read it as a slight escalation of the process you can see at places like bandcamp, where you have to give your email address to the band. In fact, there’s a great deal of free stuff available online in exchange for your email address and the implied right to promote to you.

Allowing for their differences, in both Owen’s case and the bandcamp case, there is a slightly coercive exchange dimension to replace the economic relationship with music that comes when you buy a record. The music isn’t truly “free” because you’ve got to give something to get something. Even if you are downloading music of bitTorrent or listening to a swooshy myspace track, you’re paying your ISP (and the hits no doubt generate some kind of “value” for myspace as well). Music is never really totally “free”–though what these new strategies do (bandcamp, Owen, but also Radiohead and Saul Williams, among others) is force the relationship into one between audience and performer, even if it’s just giving up your email address to allow some for some more marketing news to flow through email, the sewer of the internet.

The last chapter of MP3: The Meaning of a Format is called “Is Music a Thing?” and is an extended rumination both on the economic form of music and a debate that has ravaged music studies for at least a century. Stated roughly, one side argues that the primary “ontology” of music is artifactual–music is a “thing” that exists in scores, records or some metaphysical notion of “the work” itself. The other side argues that music only exists relationally, in process, and inbetween people. Of course there are many shades inbetween. The position you take on this debate subtends arguments about both what we should do about the music industry and what a better future for music might look like. If you are a historian of sound recording, it also shapes your understanding of what recording does. Here’s one of my favorite quotes in the chapter, from Evan Eisenberg (with some text around it from me). You’ll see Eisenberg was writing in the 1980s:

Eisenberg writes, “when I buy a record, the musician is eclipsed by the disk. And I am eclipsed by my money–not only from the musician’s view but my own. When a ten-dollar bill leaves my right hand and a bagged record enters my left, it is the climax. The shudder and ring of the register is the true music; later I will play the record, but that will be redundant. My money has already heard it.” Eisenberg’s argument is a pretty straight-up variation on Georg Lukacs’ account of reification, where relationships among people become relations among things. In Eisenberg’s world, relations that once existed between musicians and audiences are transformed into relations among cash and records.

I’m not entirely sure I believe this account since it assumes a prior relationship between musician and audience that is somehow less “damaged” by commerce. Let us not forget that before recording, many 19th century relationships among performers and audiences were mediated by money in other ways–whether we are talking about paying audiences in concert halls, cellists playing “middle music” in the back rooms of bars, or middle class women serving as home entertainment systems at the family piano. But let’s go with Eisenberg for now since there is also some bit of truth in his quote. If Eisenberg’s account is true, what happens when there is no cash and there are no records? My physical copy of Calling the Voice-O-Graph is a short run CD-R. The art on it is really nice, but it doesn’t even have a jacket. As far as I can tell, it is a “promotional” copy. But promotion for what? Promotion for the website and the project, of course.

I’m thinking about this not just as a scholar but as someone who makes music. I’ve now got two “music” projects in two states of incompletion, and one of my therapies during all this cancer crap has been composing soundscapes (and increasingly, beats) that will no doubt turn into some kind of recording as well. Then there are a couple random recording projects sitting around that I guess I would call capital S A Sound Art though I wish there were a better term (here’s an old one). I enjoy making the stuff (a lot) more than I think I enjoy the getting out and promoting it (not at all). And with bandcamp and other resources, I’d started to think of abandoning physical copies altogether. There is plenty of great music I’ve discovered online (for those who enjoy abstract electronica, try track 2 here for this week’s discovery). And yet, a physical record does something. I’m Facebook friends with Owen and no doubt got the invite to the release party for Voice-O-Graph. But I get so many invitations to so many things on Facebook that I don’t even remember getting it. And I might well not have been able to go anyway, since the whole out-in-loud-public-places thing isn’t working that well for me right now. (I also don’t really like the promotional culture of social-networking sites, and therefore don’t pay a lot of attention to it. It’s probably an age thing more than anything else.)

Conversely, I dutifully put on the CD this morning, a few days after receiving it, and then went and checked out the site. And here I am writing this post now (Owen, this is your comment!). In fact, the only times anymore that I put on a CD are when I buy them or receive them. Then they’re in the computer and I go back to them, or not as the case may be.

I won’t end this with any grand claims about how the materiality of music still matters. After all, it is a lie to call digital music immaterial (this is also a major theme in the mp3 book). And consumption patterns are intensely generational. I’m not in a position to judge the affective investments of people a whole lot younger than me, and I know that many people my age and older still populate their musical lives with recordings that live as artifacts, whether as CDs or records. That’s also the pattern I grew up with and so my reactions to a CD vs. a link are themselves second nature. So I guess I will be making some hard copies after all.

As for the mp3 book, I have yet to see (at least for me) a viable e-reader for something so thick as a scholarly book. I’m sure it will come someday. In the meantime, I’m going artifact all the way.

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