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.

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.

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* 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.

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.

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.

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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.

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 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.