I saw my endocrinologist on Friday. I’ve nicknamed him The Terminator, because he kills disease. I’m told the usual scenario is that the neck surgeon is the hard-core one, and the endocrinologist is touchy-feely but it goes the other way in my world. Anyway, my tumour marker was down again over the previous week, so he was happy. And then, he told me the results of the double blind test on lenvatinib were even better than they sounded. I’m paraphrasing here, but “you get kicked out of the study if one of your tumours grows. But if the drug works for everything else, we can go in and take care of that tumour with radio ablation, radio surgery, or surgery, and then the drug can take care of the rest,” he said with a big grin. It’s true the Terminator didn’t take actual joy in his duties, but otherwise the metaphor works.
Meanwhile, back at home, I am at that stage where everything that happens to my body could be a side effect of the drug, or it could just be my body doing its thing. Probably the latter. I woke up with a cold on Thursday, which featured that “head full of bricks” feeling and of course my first thought was IS THIS THE FATIGUE THEY TOLD ME ABOUT? No, it was a cold. The skin on my fingers is peeling, which is probably just a stress reaction to the drug (I’ve had this before) but someone in my patients’ group was all like YOU HAVE HAND AND FOOT DISEASE. No, not yet anyway.
My oncologist said of the side effects setting in: “you’ll know.”
I remember standing in Microsoft Research New England, talking with a few brilliant mathematicians and computer scientists. Twitter had just started including ads in their feed, and there was much grumbling and surprise. I responded that Twitter only had a few choices–fewer, given that they were giving away their service for “free.” A quick look at media history shows basically three business models have existed for media institutions: direct sales (eg, you buy a book), patronage (rich people hire painters, or states sponsor broadcasters), or by selling the audience to a third party. Many media industries combined these: buy a magazine, and it had ads. Some cable networks also had ads. In the Twitter case, since they had already been giving their “product” to users (let’s face it, the users were making the product for them), they didn’t feel they could start charging. They were already running on one business model, patronage (venture capital in their case, but patronage all the same) and that was running out. So short of another patron, it had to be ads unless they invented a new way of making money off media. One of the people there said something to the effect of “wow, I never knew it was that limited–I wish someone had told me.” I said “that’s why it’s good to have a media historian around.”
We see this pattern over and over: venture capital in the form of patronage makes an internet service or platform attractive to users in a “too good to be true” fashion. Later, advertising or some other marketing scheme is brought in to make money, and the platform or service is worse for it. A great case study for academics would be what happened to academia.edu when they ran out of runway.
In my intro media studies course back in the early 2000s I’d bring in the fall or spring Vogue fashion issue, topping out over 700 pages, and have the students compare how much it costs them vs the science textbooks they carried around (I never use textbooks for my courses). Then I asked them in what way they did and did not trust each publication, and why (and what it would mean to have ads in textbooks).
One of the promises we were sold in the 1990s and 2000s was that the internet was fundamentally different from other media, and including its business model. But a passing familiarity with media history shows why this never made much sense.
The internet was supposed to be different. The fact that it’s not should give us pause. All media that have ads in them–newspapers, broadcast, magazines, and on and on, are subject to considerably more regulation than Facebook, Amazon, and Alphabet/Google. Maybe it’s time we treat them like the media businesses they are.
10 days on the drug and my tumor marker (thyroglobulin level in the blood) is already down. Today was my “hobby” day at Jewish General — 5 hours in total for a variety of tests and waiting to see the oncologist. It was a short meeting but he seemed unusually pleased at the effects of the drug.
I’m increasing my dosage tonight and go back in two weeks. He warned me that at some point the side effects would hit, so we’ll see. . . .
Other good stuff happened too, but that’s the big news for now.
I grew up in a house in a first ring suburb of Minneapolis. The plot of land was clearly designed by an architect who was not from the area: an unpaved driveway went down a hill to a detached garage. In the winter, the driveway was slippery and it was easy for cars to get stuck, and it took a long time to snowblow–shoveling would have been a nightmare.
In the summers, there was the hedge. Planted in a slight depression along the property line with our neighbours (aka, a ditch), the hedge ran the length of the driveway. It was not particularly beautiful, but when left untrimmed, it started to grow wildly. When I was old enough to do lawn work, it fell to me to trim the hedge. As a kid I was never much for any chores, but the hedge occupied a special place of abjection in my young mind. It symbolized the pointlessness of suburban plots of property and all its extra upkeep: it basically existed to cause problems. Nobody appreciated it much except when it got out of control, when they sent me outside to trim it. And that chore was never satisfying to do. At least mowing the lawn resulted in interesting patterns and you could see your progress. It’s also possible I just wasn’t good at trimming the hedge.
All I can tell you is when I read The Myth of Sisyphus in 12th grade humanities, I thought of the hedge.
Years later, Carrie and I moved into a house of our own in Pittsburgh–on a considerably smaller plot of land. One day our slightly cranky neighbour Ellen stood out front her house, surveyed ours, and said to Carrie, “your bushes are out of control.”
So far so good. I’ve taken it 3 times. 4pm is a terrible time to have to take a pill, so I’m moving it to bedtime.
My rumbly stomach was much better yesterday evening. I crunched a couple antacids before bed and the only thing that woke me up during the night was a pummelling cat.
Only other side effect: my radiated patch of skin from the external beam radiation in 2010 is hella itchy. Trying a new lotion today.
I took my first pill at 4pm yesterday. The best time to take the drug is a bit of an algorithm considering my other medications (specifically: synthroid and iron, which should stay away from one another and from Lenvima).
There has been some indigestion which led to a restless night (could be related or unrelated), but otherwise I feel okay. Last night before band practice I had that metafeeling of “is this doing anything to me? I don’t think it’s doing anything to me, but maybe I feel strange.”
It’s only one day, though, so I’ll let you know in a week.
After over a two week wait, my drugs are finally here.
So this is what that looks like:
Next to my Lenvima in the picture above is a large container of loperamide (Immodium) that in my mind swells to the size of a barrel, and an anti-nausea drug.
I have not been writing about the wait because there was not much to say. I felt like I was supposed to be all “let’s just enjoy the last X number of days in my old body” “one moment at a time” and all that stuff, but honestly I was more in the mindset of “let’s get on with it” and “where the hell are my drugs?”* (The latter is a feeling, and not to be confused with criticism of any of the healthcare people I’ve interacted with). I have had a bit of anxiety, but only one nightmare, which featured the glossy pamphlet they send you with smiling people and dosage instructions. My conscious self cannot explain how a pamphlet is a vessel for fear in a dream, but there you go.
About a week ago they sent me a free blood pressure monitor, and I’ve been monitoring it each morning to establish a baseline. High blood pressure runs in my family and I’ve been happy not to have it (I credit being a vegetarian for most of my adult life), but it’s a common side effect of the drug.
Since I can’t report any effects yet, let’s talk political economy a bit. Thanks to insurance, possibly an intermediary company or the drug company itself, and possibly also Quebec or Canadian law, I am paying nothing out of pocket. The monthly cost of Lenvima has been given to me as $2500CAD (insurance company) and $6000CAD (intermediary company). In the US, I’ve read figures over $22,000US. On the Facebook group for people with my condition, there is generally positive regard towards the company that makes Lenvima, although there was a short discussion of drugs costs and their implications. As you can imagine, moderators try and keep those spaces as politics-free as possible, which I support.
My experience has been this: in addition to Quebec insurance, I have private insurance. Quebec insurance requires us to use private insurance first for anything that we can, for obvious reasons. The private insurer, Manulife, has a special form I had to locate for prior approval to take Lenvima. I fill it out, give it to my doctor, who fills it out, and then has it faxed to Manulife (the Quebec healthcare system is bizarre or intentional in its continued use of fax machines; I can’t tell).
But wait! There’s more: there are two other intermediaries I’m dealing with. First, there’s the drug company itself or some foundation associated with them. My oncologist referred me to them by filling out a form (and having it faxed), and they contacted me, assigned me a nurse, who took my information, consulted with people about medical questions, and appeared to negotiate directly with the insurance company.
Then there’s the pharmacy here, which is a specialized pharmacy, not my corner pharmacy. They also have a nurse with whom I’m supposed to talk if I have questions, as well as a pharmacist. It’s not the kind of drug that you can get at the corner pharmacy.
Now: why is the drug company–Eisai–providing patient services at all in Canada? I imagine it has something to do with the newness of the drug and getting it approved here, or some kind of deal they are striking with provincial governments,** or some other angle I don’t understand.
So, in sum: the drug is absurdly expensive, I have people outside the normal healthcare system working as intermediaries for me in ways I don’t understand, on top of my oncologist, I have two nurses reachable by phone, and I’m not paying out of pocket.
I’ll take it.
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*Also, I am happy that it is a pill and not chemo. **Note for people outside Canada: it’s a myth that Canada has nationalized healthcare. It is handled at the provincial level, and provinces set their own policies, though to my knowledge healthcare is a right everywhere in Canada.
