On To Phase “The Next”

In Christianity, My thyroid, Peanut, Tolkien on May 29, 2012 at 4:10 pm

Friends, how have you been? I can hardly believe it’s been five weeks since surgery, it’s been such a whirlwind. Between starting back at work and getting ready for the next stage of treatment, I’ve hardly had a chance to breathe. Evidence of this is that I haven’t updated my other blog in ages. Sorry, you four people out there who read it!

So radioactive iodine treatment (RAI) begins next month. Being quite naive, (and not having studied endocrinology since med school), we didn’t realize it would literally take up the whole month. This is particularly irksome because June is both Tolkien’s and my birthday month, and while he like most adults would find it hard to care less about his birthday, I love birthdays. I don’t mean I’m one of those birthday-zillas Carolyn Hax is always writing about who demands that everyone throw me parties and buy me jewelry, I just mean I really like the idea of everyone on earth having one special day. I like planning what kind of chocolate cake I get to have on that day. I like going about my regular business thinking in my head “Hello world! It’s my birthday!” I like wearing my favourite shirt even though I just wore it the other day because I can, FOR IT IS MY BIRTHDAY. (Psychiatry friends, please keep your diagnoses to yourselves. Thanking you in advance.) I know, I know, who else really cares about your birthday after the age of 21? No one (although my poor family feels compelled to pretend otherwise), but that’s OK. I care, and I care about everyone else’s birthdays too — this totally goes both ways. On your birthday, I believe you should be the prince/princess (within reason; no expensive presents or genuflecting included) and eat/wear whatever you want. (Bathing of some sort is not optional though, I don’t care whose birthday it is.) So yes. Birthdays!

Where was I? Motherhood has made me so distractible. Oh yes, thyroid cancer treatment. So the full RAI dose is on June 21, but that event is only one in a series of appointments that will consume the last two weeks of June. And for the first two and a half weeks of June, I need to go on a low-iodine diet in preparation. (This is so that any remaining thyroid cells, which may or may not be cancerous, will be “hungry” enough for iodine to take up the radioactive stuff.) What is a low-iodine diet, you may ask? It is a quite restrictive instrument of torture wherein one is denied, or basically denied, many major food groups: no dairy, no store-bought baked goods or bread, no seafood, no meats where you didn’t personally raise the animal from birth and muck out its stall with your bare hands, no processed or canned foods, no chocolate, nothing with molasses, nothing with various specific food dyes, and on and on. But did you catch that? Because there is only one thing that matters: this diet is for the first half of June. I CANNOT HAVE CHOCOLATE ON MY BIRTHDAY.

I am still wrapping my mind around this impossibility. I mean, any day without chocolate is an impossibility, let’s be honest, but my One Special Day? I know, I know, I should be a grown-up, plus everyone’s saying once it’s all over, you can have as much chocolate as you want, we’ll just celebrate late, but you know what? I can’t substitute another day very easily. That just seems like a sham, to have a birthday dinner on, say, July 8, when I would know it wasn’t my birthday. (Yes I realize this birthday neurosis borders on crazy, why do you ask?) But then, my moral fibre isn’t going to be strong enough to actually prevent me from eating any chocolate that happens to be presented to me on July 8 or any other non-medical-diet day, so it’s really a moot point.

The diet is one part of what’s going to make June a challenge. The other part is that after RAI I need to go into isolation to protect those around me, particularly Peanut because she is under 5, from the radiation I will be emitting. The guidelines on how strict and how long isolation should be vary widely, even among medical literature, which is not that comforting when you’re on the patient side of things. The paperwork my own hospital sent me was blithely unconcerned (“Try to stay away from other people for 3 days. Also, try not to cheat on your taxes, but if you do, no biggie!”) But other reports have people renting apartments for weeks to stay away from their families. As you can imagine, the responsibility of not exposing your loved ones or anyone else weighs heavily. The radiation is contained in bodily fluids, so it is not passed on through touch or the air (unless you sneeze) but managing it until it’s all gone will still be complicated (using disposable dishes, using separate linens and a separate bathroom, covering electronics in plastic wrap in case you sweat, etc.). Trying to figure out exactly what to do and for how long has been somewhat stressful, because of the stakes. And during my research, I came upon a patient-information website that said “You will be admitted to the hospital the day before your RAI and your radiation levels will be checked every day. Once the doctors feel you are safe to go home, they will discharge you — usually about two weeks later.” Who in the what now? I soon realized it was a site from the United Kingdom. Oh right, I forgot we live in the U.S., the only developed country in the world without national healthcare! Anywhere else, I’d be admitted as an inpatient for this treatment, but here, because the FDA approved RAI for outpatient use in the 1970s, insurance companies promptly stopped paying for hospital admission (except in very narrow circumstances which don’t apply to me.) What this means is that protecting others from radiation depends solely on the dedication and/or ability of the patient. Some patients go to the hospital, get radioactive iodine, and take public transportation home (not maliciously — they may not have a car), thereby exposing us all.

Whatever — I don’t really want to segue into a discussion about socialized medicine, as it’s pretty obvious I think it’s a moral obligation. It’s not the point, and I am also aware that universal healthcare isn’t perfect either. Also, I don’t want to start complaining, because how incredibly fortunate are we to live in a place where this treatment is available at all? The actual point of this long-winded stream of consciousness is that Tolkien and I have to plan our own isolation using our limited resources. (For example, we don’t own a lead-shielded house.) The good news is that the radiation does degrade off surfaces and out of the patient; you just have to give it enough time. And as some of you know, I recently started a new job with a national company doing consulting for hospitals around the country, which I really enjoy, and I now work at home. Since I just started, I’ve already used up all my leave on the surgery, so I will still have to work while going through RAI, but it will be much easier when all that means is walking to the basement. And hopefully I’ll be one of the lucky ones who doesn’t get too sick.

The plan is that I’ll live in the basement for the last two weeks of June and Tolkien will stay upstairs. For the utmost protection, Peanut will go “on vacation” for two weeks to her grandparents’ houses — one week with each set. By the time she comes back, we should be all clear and back to normal. We’re so lucky to have them be able to do this for us, but I feel really bad at all the upheaval this has meant for poor little P. Don’t get me wrong — she remains the beneficiary of X-Treme Grandparent Spoiling, which will actually be an event at the 2012 London Olympics — but she’s still only two and a half years old. Your prayers that this will be a mere blip on the screen for her would be much appreciated!

The diet starts Monday, so I’ve been trying to cook low-iodine foods to freeze ahead of time (this cookbook that Tolkien found has been helpful) and steeling myself for the necessity of just stuffing this crap down my gullet no matter what it tastes like. (I haven’t taste-tested any of it because I’d like to delude myself a little longer that it might all be extremely delicious.) Last night I was up till 1 AM baking low-iodine bread in our bread machine. Now, I’ve used that machine before (back in, um, 2008) and I don’t remember the bread turning out like this (a dense, pentagon-shaped cube, if there could be such a thing) but maybe that’s how it’s supposed to look, you be the judge:


My mom and dad have also cooked and frozen some meals for me, which is awesome. (No one seems tempted to sneak a bite though.) Unfortunately this all comes at a bad time since Tolkien has to go out of town as his fellowship interviews have started, not that there’s ever a good time in medical training. He has just 2 years left to go though (at which point we will have had 13 years of education and training post-college.) Friends, don’t be mean to your doctors — have pity on them!

So that’s the latest update. I wanted to write it all in one place since so many people have been asking for details. We’re incredibly grateful for your concern and prayers, and would love if you would pray that June will go quickly and smoothly. In the meantime, have a little iodized salt for me. Sprinkle that stuff on your coffee if you have to. Ahhh … it’s as if I’m sipping it myself.

  1. Oh sweet Much, that you can find humor in this is amazing. I will of course be praying. Your June sounds a little like my May, minus the physical angst. At least you get to isolate. During my six weeks with daughter,kids and dog, I prayed for isolation to no avail. Just kidding…hang in there. After this intense and prolonged treatment….will you get a break?

    • Kerry, thanks so much for reading! I’m so glad we can keep in touch even though we were neighbours for such a brief time. I read about your May, and I’m glad you made it through! It’s a bit of a bummer that Tolkien’s residency makes a real break nearly impossible … but we are really hoping to wrangle a vacation next spring. God willing! Hope you are doing well!

  2. […] gotten so interested is because it’s an effective distraction from the fact that the next phase of cancer treatment started for me this week. On Sunday we took Peanut to meet her grandparents, so she can be away […]

  3. What are you talking about, that bread was delicious!

  4. […] months have passed since my last post, but I’ll quickly recap what we’ve been up to: recovering, working, being in the weddings of close friends, Peanut starting preschool, Peanut’s 3rd […]

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