I got what I wanted, sort of

So after having three (yes 3) of my doctoral students defend their dissertations Monday and Tuesday, my reward was to spend yesterday and today getting tests and doctoring.  The good news is that they have decided to go back to watchful waiting for now.  I will have another full body scan in three months (this time including brain) and after that, they will probably break it up into various different kinds of scans for different body parts. But I have to say meetings with a medical oncologist are nothing if not sobering.  Right now the disease isn’t doing much of anything.  It might continue to not do much of anything, but once it starts “trying to grow” it can move very fast and go from a slow-growing don’t worry about it cancer, to the standard aggressive, take over your body, lights out kind of cancer.  And I’m now fully in their system, which is quite functional and efficient, but I’d definitely not be at the place I’m obviously at in triage. It means they think it’s serious.

Now more of the good news.  The oncologist said “I’m not impressed by your tumour.”   Music to my ears.  The CT scan report shows my lung nodules are more or less unchanged since July.  The big one was measured a little smaller, but within the realm of human error, so I don’t think the radioactive iodine had any effect.  My thyroglobulin is down (that’s the tumour marker in my blood), which is very good.

They also assigned me a primary care doctor (oh the irony, I now have two and many people in Quebec have none), who specializes in young adult cancer patients.  Because that’s my category.

Thanksgiving update

It’s American thanksgiving!  I’m thankful for my wonderful family and friends (some of whom I will see tonight at a potluck), KITTENS and CARRIE, great colleagues and students, as well as for the kindness of strangers. Since I last posted, I got a little information on Inspire.com but the ThyCa people managed to manually add me to the advanced thyroid cancer listserv, where I got much more good information (including help with a list of questions for the doctor today).  I am also grateful for socialized medicine and the fact that I like in a place where there are people who do research on thyroid cancer (and that the cancer wings of the Jewish are better funded and more functional than some others).

So, onto that.

I went to the medical oncologist today.  The discussion was serious but inconclusive.  There is another CT scan in my future and I’ll be talking with him again in a couple weeks while he gathers more information.  Here’s what we know: My thyroglobulin (that’s a tumour marker in the blood) is down from 57.5 to 40.2 after the radioactive iodine.  The CT scan report is woefully vague–it says there is no visible update but does not describe the size of the lesions in my lungs.  So there will be another CT scan.  Also, there is some confusion about prior RAI uptake in my lungs in 2010.  So he will talk with my endocrinologist, we meet again in two weeks, and the CT scan happens thereafter at which point we come up with a program for treatment or non-treatment.

The options are:

1.  Exploratory lung surgery to get an absolutely firm diagnosis.  This isn’t likely to be necessary as everyone is pretty certain it’s thyroid cancer.  If it weren’t thyroid cancer, there would be a whole other set of questions.

2.  More watchful waiting, which means regular CT scans and followups.

3.  Medical oncology treatment with tyrosine-kinase inhibitors, which can slow or stop the growth of metastatic thyroid cancer but do not reverse it.

I’ll know more in two weeks, but even then, it will probably be a bit longer before we’re certain how this particular episode will shake out.

Well, that didn’t work out as hoped

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.

Tuesday Dinner / Today Lunch Report

Tastebuds are mostly back!

Tuesday night I arrived home tired, and didn’t feel like cooking. t took out some left over tabbouleh from the weekend. I ate it and thought “wow, this tastes good.”  When I realized that 3-day old tabbouleh doesn’t usually taste better than newer tabbouleh, I went over to the butter dish, rubbed my finger on a little butter and tasted it.  Wow!  Butter!  Then I tasted some salt.  Wow!  Too salty!  So my taste appears to be mostly back.  I’m still not sure I’d season food for other people but soon I’ll get up the courage to try.

Today I ate a corporate burrito for lunch, which was surprisingly good, though it still has a certain number of errors that can only be called Canadian.  For instance, it was grilled. The company may advertise “mission style burritos” but I have never had a burrito grilled for me in the actual Mission.  At least the salsa wasn’t sweet (also a common problem in Quebec).

The other problem with the burrito is that I bought it from a big corporation that has a deal with McGill, instead of from an awesome student group like I usually do, because the administration has put a stop to students selling burritos in the building next to mine.

I Haz No Flavor

Or more accurately, I am losing my taste.  I probably do have a flavour.

This particular side effect of RAI can set in a few days after treatment, and in this case it did. I noticed it this morning at breakfast.  It’s sort of like having a badly burned tongue–everything is muted, some flavours more than others. Last time this happened I couldn’t taste sour at all.  This time I sort of can, but I’m trying to figure out what has taste and what doesn’t.  At least I still have smell….

A typology of shitness

All things considered, radioactive iodine treatment is “getting off easy.” It lacks the existential fatigue and sunburn from within that sets in with external beam radiation. It lacks the utterly disjunctive  transformation and bizarro pain from unexpected places that comes with surgery, and it lacks the body-falling-apart poison experience of chemo (I’ve only heard about the last one; the other two I can speak to more directly). But it was still shitty in its own unique way. People complain about the low iodine diet, but that was mostly a challenge. The lithium and RAI together, though, gave me a little window into why sometimes you hear about people not taking their meds.  Once the lithium built up, I felt like I had a head filled with sand, dry mouth and eyes, and once I took the RAI pill, I was tired all the time.  I woke up Monday morning worried that the condition would last indefinitely. Happily, it hasn’t. I’m returning to life but it’s a slow process. I would say I’m still around 80% or so in terms of energy. I can think clearly, though, which is a welcome relief.

This morning I had the blood test and scan that follows after radioactive iodine. I wish I could say it was a big relief, since it marks the final stage of the treatment process. But honestly, it felt a little ominous. So now I just have to wait to hear from my doctor.