didn't tell

Every week in my class, one student is selected as the "superstar." The superstar gets to sit in a special chair. Every day after morning meeting, the superstar gets to share some things about him or herself, or read from a favorite book. On Friday, the kids all write letters to their superstar classmate, and read each one aloud.

Last week, we ran out of students, so this week, as the newest member of the class (or at least, presence in the classroom), I got to be "it." It's a comfort to know that both the teacher and the aide who was in this class previously were also superstars over the course of the year.

So, since I'm old, I had to think about what to tell these kids. I printed out some photos of my extended and immediate families, some of the cool cakes I've decorated, and a really nice aerial photo of Cape Cod. I talked to them about Massachusetts and going to the beach and all kinds of things... but I didn't tell them about the cancer.

I just really did not want to get into it with them. They're second graders. There was no reason for them to know. If I had been doing a similarly-themed presentation to high school kids, I would have made different choices: family, obviously, but more focus on where I went to college, and what my jobs have been. And since one of my jobs is facilitating the support group, that would provide a nice segue, I think. But for these kids, right now, I'm not telling.

regarding salivary gland issues

From time to time (like today!) I get an email or a comment asking for good information about salivary gland damage from RAI, RadioActive Iodine treatment for thyroid cancer.

Unfortunately, post-RAI salivary issues are a lot more common than your doctor may let on. For the most part, the first flare up is (more) severe. Some people have one incidence, post-treatment, but many continue to experience periodic flare-ups, some triggered by eating certain foods (sour, spicy), or sometimes nothing at all.

If you're looking for some good introductory material about this condition, here is an article on ThyCa.org.

Here is the link to the article on MedScape about radiation damage to salivary glands. This is a much more technical article targeted at a medical professionals, but it also includes an illustration of a very beneficial massage technique (figure 7). (MedScape may require free registration.)

Last but not least, I recommend NSAIDs such as ibuprofen (Motrin, Advil) or naproxen sodium (Aleve) as both a preventative immediately after dosing with RAI and for the next 2 days, and as a treatment whenever the salivaries swell up and become painful.

An aside: I had trouble recently distinguishing jaw pain (TMJ/TMD) from salivary gland issues. Some ways to distinguish between the two: salivary gland issues will not cause clicking or popping when you open and close your mouth, as far as I know, and repositioning your jaw or opening or closing your mouth will not change the type of pain/pressure you experience from salivary glands. If you're hearing pops or your jaw joints hurt when you open or close your mouth, you're most likely suffering from TMD. Unfortunately, it's entirely possible to have both issues at the same time!

don't say it, don't even think it: what not to say to your thyca patient

Medblogger Life (and death) posts about a thyroid cancer patient, and begins:

"If I had to pick a cancer to have, I'd pick thyroid cancer."
That's what I tell my patients...

My reply:
Speaking as a thyroid cancer patient, I can tell you that I cringe every time I hear that "If I had to pick a cancer..." line. No one would ever, ever choose cancer, and your saying so is patronizing and annoying. Your patients may not appear to be annoyed when you say this, but that's because they're still in shock from hearing the diagnosis of cancer, and they've still got that word, CANCER, echoing in their brains and they're trying to figure out what's going to happen them, etc. Take my word for it, they'll be irritated later.

Thyroid cancer is not the cancer you'd choose, and it's not a good cancer, either. It is often a manageable, treatable cancer, and the management and treatment options are the good things, not the cancer.

You are correct in that, for the vast majority of patients, thyroid cancer is a die with cancer rather than a die from cancer, but it's still cancer, and it is a cancer that we patients must confront every single day of our lives, post-thyroidectomy. Can you name another cancer that forces its patients to take suppressive chemotherapy every day for the rest of their lives, or they'll die? Our thyroid meds do double duty, providing us the necessary thyroid hormones our absent thyroids would produce, and also keeping our thyroid stimulating hormone very, very low to help prevent the growth of any remaining cancer cells. We have to take this medication every day without fail; we cannot survive without our thyroid hormone supplements. And if our dosage is incorrect or we take it incorrectly, we may face a recurrence that could otherwise have been avoided.

That's not to say that thyroid cancer patients are doomed to a miserable existence. I'm 27 months from diagnosis, and 15 months from my second surgery, which involved four neck dissection procedures. I'd say it took about six to eight months after my diagnosis to get my medication levels correct, and that was rough. Having to go on the low iodine diet prior to follow-up scans is tedious and, because it's easy to make a mistake that can invalidate the scan, nerve-wracking. Day-to-day, I have an active, full life with family and friends and work. But I still have cancer, and my tumor markers are hovering in a gray area that means I have to go for follow-up every few months, so I never get to not-think about it for very long. And even on days when I don't have to think about, I still have to take those meds.

My 8-year-old daughter asked me when I could stop taking my meds. Her experience with medication is limited to analgesics and the occasional antibiotic for strep throat or an ear infection, all of which are limited in time. I told her, "When I'm dead," and she was startled. I had to explain to her that I have to take them every day, for the rest of my life.

I'm OK with it now, but the idea does require some mental adjustment. I urge you not to continue to downplay the significant impact that a thyroid cancer diagnosis will have on your patients' lives.

I also want to apologize if I'm giving the impression that I think you don't care, because it's obvious that you do care, and care a lot. I'm just trying to counsel you against committing the most frequent insult to thyroid cancer patients' intelligence.

diving in

I posted at the ThyCa Survivor's Yahoo group today -- that was like diving into this whole (thankfully limited, but still large) world where everyone knows what's like to have thyroid cancer and terms like TSH and Tg are tossed around effortlessly, not to mention LID and WBS and T4, etc etc etc.

I also continued my email correspondence with the Phoenix ThyCa rep, who is just awesome.

I feel as if I have uncovered a huge treasure trove of knowledge... the temptation to swim through it endlessly is very strong, but I'm limiting how much I get involved because I know me, and I can't let myself get obsessed with it.

I spent a good deal of time this evening answering emails about my history and treatment so far. Everyone has been helpful but it is hard going over the old ground again and again. I feel a little worn down by it, but I've also gained some new knowledge and perspective, and that helps a lot.

There are people out there who've been living with Stage IV for years -- sure, it's there, but it's not really causing problems and they can just get on with their lives. Even if I do have an aggressive cancer, the tracking and treatment protocols are the same -- so there isn't anything else I can be doing right now.

At least, that's how it seems, and that's a comfort. I may need more treatment down the line, but for now I'm going to just keep swimming.

Yes, the peewees did watch Finding Nemo today -- I recommend it. It is a nearly perfect movie.