Glow in the Dark Odell, limited showing
The Glow in the Dark Odell for a limited appearance.
Posted early 2009
Let me start by updating you on my neurological conditions.
On January 21st I met with Dr. Prin, my lead neurologist. The battery of tests they ran back in September showed nothing. They still have no idea what has caused—or is causing—the wide range of neurological symptoms I’m experiencing. They don’t believe it’s Hashimoto’s Encephalopathy, but only because my cognitive abilities haven’t declined. Normally with any encephalopathy (brain injury), cognitive skills are affected.
The one thing they told me was that at this stage they would usually start looking for cancer somewhere in the body. But since I already have cancer, they don’t feel the need to look further. (Also, my PET scan in September only showed thyroid cancer.) In rare cases, when cancer is present, the immune system can go into overdrive—attacking not just the cancer, but also parts of the brain responsible for motor control, including breathing.
Basically, they told me, “If it gets worse, call us.”
Today I met with my endocrinologist. Unfortunately, she didn’t have many answers either, despite my 20-question list. We still need more information and more tests. The next step comes in June, when I’ll have another total body scan—my fourth so far. Two of the previous scans rank among the worst experiences of my life (and that’s saying a lot). The scan itself isn’t bad—it’s the preparation. To get accurate results, I have to stop my thyroid medication for about a month. Within a week I feel weak; after two weeks, I can barely move. All I do is sleep, and recovery takes months. I went through this in December and still haven’t recovered fully. I’m sleeping 9–10 hours a day and have only managed two full days at work without a nap. So, the “Glow-in-the-Dark Odell” will be returning in June.
As I said, there were no real answers—but plenty of questions.
When I asked whether she agreed with the radiologist that the uptake in my chest was in the supraclavicular region, she first said no, then admitted he was better at reading scans. The location doesn’t change treatment for now, but I believe the growth is lower in the chest, meaning it’s a distant metastasis—and my chances of full recovery drop sharply. Still, considering how many “unlikely” things have already happened, maybe that’s not a bad sign.
I asked if surgery in that area would technically be a mastectomy. She hesitated, then finally said yes. I guess I may be doing my part for equal rights. (Now that’s taking PC too far!)
When I asked if they might need to go back into the thyroid bed, she said she didn’t know—but when I asked whether I should start sign language classes, she admitted that might not be a bad idea. That’s scary. My surgeon wanted to go back in there before but said the risk to the vocal cord nerves—and my voice—was too high.
As for the uptake on the right side, my doctor said it could be leftover tissue from the last surgery—or it could be in the skeletal muscles. The only way to know for sure would be another biopsy, and we’re not ready for that yet.
She also told me I can have one, maybe two, more radioactive iodine treatments before the leukemia risk becomes too great. After that, we’ll need a different approach.
I asked about switching to the Thyroid Cancer Clinic at OHSU instead of continuing with her. She said she’d support whatever makes me comfortable. I respect her, and since my surgeon is already part of that clinic, I’ve decided to stay with Dr. Orr until at least after the June scan.
And the big question—“How long do I have?” She still believes my prognosis is good. Whether that means I’ll eventually be cancer-free or just live with recurring cancer for the rest of my life, she doesn’t know. But she didn’t dispute the American Cancer Society’s 49% ten-year survival rate.
So it’s back to one day at a time. My focus now is preparing for June and learning to cope with this recurring test—since I may have to repeat it every six to twelve months for the rest of my life.
Thank you all for your support. I’ll keep you updated.
Your friend,
Odell
Comments
Post a Comment