Interesting Times: Update 19
Summary: I had a second round of radioactive iodine (RAI) treatment June 3. Now I wait.
No scans – and I’ve had many – have showed metastasis. But my blood work has always showed thyroid/cancer cells left. Not a lot, but increasing, and enough to make RAI worth doing.
So for six weeks I withdrew from my normal medication. For two weeks I went on a low-iodine diet. I took a pill of radioactive iodine and stayed isolated for a week while it passed through my system and was absorbed by any cells that needed killing off. I had another scan to see where that absorption was. And now I wait – for another scan in two weeks and another round of tests in five months.
I find it hard sometimes to find the appropriate balance between positivity and honesty. I am deliberately positive and I’m not lying – but I don’t want to be phony and act like that’s all there is. So let’s be very real.
RAI has sucked. A lot.
- Going off Synthroid, the hormone that powers my metabolism by replacing what a thyroid normally makes, has made me exhausted, depressed, unable to think (and resulted in six months of fitness progress disappearing in a few weeks). (Look up “hypothyroid symptoms” if you want a list, but to quantify how bad I got: Normal TSH is 0-3. A high TSH is 4-10. Mine had to get above 30 for this. I was above 218.) I am, thank God, coming back, but it takes six weeks. So even still, two weeks later, I’m having a hard time.
- Radioactive iodine is, frankly, not fun to experience. For a few days I was too nauseous to move, too exhausted to stand up, and locked up alone.
- The last scan, showing where the radiation was absorbed, lit up in four places: two spots where my thyroid was, one in my neck and some in my jaw. These could be cancer. They could be scar tissue. The first two could be thyroid tissue trying to regrow. The fourth could just be inflammation due to the stress-related jaw pain I experience.
I am so lucky:
- I have kept working and exercising every day it was physically possible. I’ve taken good care of rest, nutrition and immune system with the help of my wonderful doctor, nurse, family and friends.
- Faraway friends sent me care packages that made me cry and local friends have kept me supplied with meals for weeks. I can’t look around without seeing something that makes me so grateful I want to cry.
- My clients have been 100% understanding and supportive. I work for the best people in the business – not just the cleverest, most driven, most creative and successful, but also just the best people – the kindest and most thoughtful.
- My care team is so proactive and dedicated. I could not possibly feel more secure or more cared for.
- I have iodine-avid disease – meaning this treatment can work for me. It doesn’t for everyone.
But I am being both positive and honest, so here’s some honesty. This has been awful in a bunch of ways, it continues to be awful in a few ways, and it will continue to be awful in a couple ways a while longer.
- I am physically, emotionally and psychologically done. I’m drained and it’s going to take a long time to get back to “normal.”
- I haven’t been able to work, and freelancers do not get salary or leave. As I feel better, I want to do more – I miss work! – but can only do so much before I exhaust myself, and that happens maddeningly quickly each day. My finances are in fairly dire straits. I’m really excited about working hard again – I love what I do – but it’s challenging and I’m in a serious position right now.
- I am scared, and I will continue to be. In July I’ll have a CT scan of my jaw, though they think that is just inflammation, just to see. The radiation should be killing off anything bad in the uptake areas, but that takes time, so we wait and re-test in November. And I try not to think too much about what those spots could be or what they could mean.
I am trying not to think too much about the future. I could use your prayers to help me.
Background on these interesting times:
First post – Diagnosis
Update 1 – The plan / fear
Update 2 – Giving blood
Update 3 – Post-surgery
Update 4 – The other half of the time
Update 5 – Infection
Update 6 – Grossly unremarkable
Update 7 – All about RAI
Update 8 – Withdrawing
Update 9 – Isolation
Update 10 – A neck, in 5 pictures
Update 11 – Don’t look up
Update 12 – Business as usual
Update 14 – Yes, I skipped 13
Update 15 – Copy paste
Update 16 – What Allison said
Update 17 – Good results don’t get you off the hook
Update 18 – Here we go again