Well, that didn’t work out as hoped

by Jonathan Sterne on November 24, 2014

So the radioactive iodine didn’t work.  Of course “didn’t work” is a bit of an abstract concept. You will recall that the possible outcomes ranged from complete annihilation of the metastatic thyroid cancer cells in my lungs to, well, nothing. It definitely didn’t get rid of the cells.  If it slowed or stopped the growth, we wouldn’t know yet. Unless they have a way to tell.

I am not sure how I feel about it. I went in knowing that there were a range of possible outcomes, the risks seemed more than worthwhile and frankly I was just so relieved they were finally going to try it that it didn’t occur to me to place huge expectations on its success. I am of course not happy, and if I am honest, at this point I have some rather inchoate anger at the cancer itself–nobody wants to be a patient and live the bureaucratic and emotional existence that comes with it. (Though it is better than the alternative.) But mostly I feel like it’s on to the next thing.

The next thing is a consult with a medical oncologist. You don’t do regular chemo for metastatic thyroid cancer in the lungs, but they sometimes do something the doctors call “soft chemo” which is basically pills you take forever. I don’t know if it’s time for that yet or not, but I’ll at least get an opinion on Thursday, which is my appointment. Yes, Americans, that’s American thanksgiving (Canadian thanksgiving is in October).  That’s okay.  This year, like every year, I’m thankful for socialized medicine.

I have tried to not read up too much on tyrosine-kinase inhibitors, which is the kind of drug they’d likely use, before I know for a fact that that’s the way it will go.

But I did decide to get back in touch with the advanced thyroid cancer community, which I had left behind in 2011 after my treatment stopped.  This was an American group–Canada is simply too small a country for me to find people online whose experience is similar to mine.  What I need right now are other people with lung mets so I can compare my experience to theirs, especially if they have had some kind of interaction with pharmaceutical oncology. I have lots of questions about the drugs, and also whether treatment is warranted right now in my case.

As it turns out, that was no easy trick.  First I tried to rejoin the advanced thyroid cancer listserv that was run off Yahoo’s site. Their interface is a mess, and I couldn’t make it work.  There was no tech support, and no way to talk to a human. I think contacted the US thyroid cancer survivors’ group, which runs it.  The director of ThyCa wrote back (impressive!) suggesting I go to Facebook or the execrably-named inspire.com, because the listserv was mostly abandoned. Which is probably better since Yahoo’s listserv interface is a joke and visiting the groups page I see that several groups I once visited are now filled with porn spam. Oh, well. Fuck Yahoo.

So I joined inspire.com. I am not inspired (it seems more appropriate to say “I AM NOT FUCKING INSPIRED” but that’s perhaps a bit melodramatic). It appears to be a kind of generic social network for people with various kinds of conditions to exchange information, blog, etc. But what happens when a single company tries to conglomerate all illness-based virtual communities under one roof? I don’t know yet, but I will say it’s definitely got a little of the “Smile or Die” vibe, and I was not surprised to find, when I went to set my email preferences, that the default was checked for me to “receive messages of potential interest from our commercial partners.” And I can’t just bail. So far, it looks like it might be the only place with a high enough population concentration to actually have other people with lung mets.

Yes, I have been broadcasting my cancer experience to the world from this blog, but that’s for free. I am really not cool with someone else repackaging and selling it to advertisers, who can sell it back to me. I am reminded of Lochlann Jain’s rumination on cancer and the American dream:

A culture that has relished such dazzling success in every conceivable arena has twisted one of its staunchest failures into an economic triumph. The intractable foil to American achievement, cancer hands us, on a silver platter and ready for dissection, our sacrifice to the American dream.

For all I know there is a large body of scholarship on the commercial capture of online patient communities, but if not, well, I’m about to become a participant, if not a participant observer.

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