Stop The Ride, I Want to Get Off

I love roller coasters. In January, B and I hit six parks in Orlando in three days, racing from one coaster to the next. (No, we didn’t have any kids with us. They would have cramped our Disney style. We managed to hit every roller coaster in Islands of Adventure in 45 minutes one day, which gave us more time to have a beer and listen to the Blues Brothers at Universal later that day.)

I dreamed of roller coasters last night. But instead of dreaming about the exhilarating feeling after a long drop, I woke up remembering that the shoulder harness in my dream didn’t work.

How fitting.

This last week has been a bit of a roller coaster. The highs: a clean radioactive scan, a clean chest CT, stable blood work showing no additional growth in my cancer marker (thyroglobulin) since March. That’s right–all good news. No indication that the cancer has spread.

But then there was the low: my doctors’ indecision about how to treat me, given all that good news and the fact that my case falls smack dab into the gray area of the treatment guidelines. As of Friday, there was a distinct possibility that they’d recommend against RAI–opting either for surgery sometime soon or just to “wait and watch” my tumor–which would have made the last two weeks of this diet all for naught.

Today was decision day. For me to have the iodine treatment on Wednesday, I needed to start my treatment prep today with the first of two more Thyrogen shots (aka, the shots that make my butt worth a lot more than my first car). They could have given me a shot and made the decision tomorrow if they needed to, but all things considered, they’d rather not administer a $1,500 shot–and I’d rather get off this stupid diet–if we were going to go in a different direction.

My doctor’s recommendation this morning: either watch and wait or RAI.

Huh? Wasn’t he supposed to say, “Here’s what we need to do”?

Nope, instead he reiterated what he’s said all along: that mine is a tricky case, that he’d feel totally comfortable watching this and treating it (likely with surgery) if the tumor continued to grow, that he was comfortable with trying RAI to see if that could knock this tumor out at its current stage.

And then he punted the decision to me.

There’s no slam dunk, easy decision here–for my doctors, or for me and B. We could take the most conservative approach, just to wait and have repeat ultrasounds every three months to watch for growth. There is a possibility that it won’t, but also one that it will, and that it will spread to other lymph nodes. That feels like a gamble we’re not willing to take.

Surgery was still undesirable, for all the reasons my surgeon laid out last month. That left radioactive iodine if we wanted to do something, and we do. Only…the big downside to RAI (besides the diet, the isolation, the destruction of salivary glands, the loss of the vacation I was supposed to take next week) is that there is an upper limit to the amount of RAI you can have in a lifetime without damaging your bone marrow. Right now, the nuclear medicine experts think it’s about 1000 millicuries; I’ve already had 146, and this dose is expected to be about 150. That leaves me with 700 more to stretch over many decades. It’s enough, for sure, to give me a mega-dose if I need one sometime in the future–but not much more. Did I really want to shoot one of the 150 mci bullets we have in the chamber?

Ultimately, after much discussion, we decided yes.

It’s not a perfect decision, but it’s the right one for us, right now. I saw my wonderful nurse–also a thyca survivor–at the hospital when I went in for my shot, and she reassured me that the team is fully behind our decision, and that she would have done the same thing.

So now it’s off to Target to stock up on sour candies and trashy magazines, and then back here to wash all the towels that my kick-ass girls sent for me to take to the hospital to help with my many showers, and finally to recap the LID cookoff. I’ve kept you all in suspense long enough, and I know how that feels. 🙂


3 thoughts on “Stop The Ride, I Want to Get Off

  1. I would like to think that what looks like indecision is very thoughtful consideration. As long as the proactive choices mean moving forward. Standing still is not a solution.


    • Dad, you are absolutely right that what I perceived as indecision was in fact thoughtful consideration on the parts of many doctors of the right path to take. And I’m certainly not wishing for less good test results that would have made the decisions easier!

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