A few thought while I am waiting.
A few thoughts while I am waiting.
Right now, I’m in the waiting game. On Friday, I’ll see my surgeon to review the results of my latest tests and figure out a plan for going forward. I’m seeing the surgeon because my endocrinologist is currently on medical leave.
Before facing whatever comes on Friday, I wanted to look back at this year’s medical rollercoaster. The last time I wrote was in January. Since then, I’ve had my share of ups and downs — including four different cancer scares that, thankfully, turned out to be nothing.
I also went through some very painful physical therapy. It turns out I’ve had so much radiation that the muscles in my neck have begun fusing together, and they had to be gently pulled apart. In April, I needed to use my cane again for a few days until I could get more steroids. My doctor has now decided I’ll need extra treatments every three months to stay on my feet.
In June, I noticed my shoes were wearing out quickly because of what’s called a “gait problem,” and I was getting blisters on the balls of my feet. I bought new shoes with better arch support — that helped — but around the same time I began stuttering more and slurring my speech. I also took a bad fall while out walking and ended up face-down in the gutter.
July brought another relapse that nearly sent me back to the cane. In August, I had another setback just two days after treatment and ended up in the ER. It was then that I met my new neurologist — who promptly fired me. He said there was nothing more they could do for me. They didn’t understand my disease, or why the treatments they’d been giving me even worked. From now on, he said, my regular doctor could handle it.
In September, the “big test” phase began. I had four steroid treatments — the most I’ve ever had — and within two days I was relapsing again, very sick. After some research, I believe I wasn’t under-medicated, but rather suffering from steroid withdrawal. The symptoms are nearly identical, and I’m already at the highest allowable dose. I was sick for most of that week while the testing was underway.
The following Tuesday, I had an injection of Thyrogen — an artificial thyroid-stimulating hormone that activates any remaining thyroid cells in the body. Within an hour, I lost my voice, and I’m still having trouble speaking. That’s not a listed side effect anywhere, so I developed my own theory: as the thyroid cells activate, they swell, and some may be pressing against the nerves to my larynx. That would only make sense if I still have cancer.
On Wednesday, I had a PET scan, and on Friday a whole-body scan. I don’t yet know what the PET scan revealed, but on the whole-body scan I saw some uptake in the throat — nothing major, and nothing that would explain my voice problems.
So here I am — without good options. The best-case scenario would be if they found all the cancer gone except for one operable spot. My neurological symptoms are getting worse, and I may not be able to tolerate treatment much longer. If my condition is paraneoplastic (caused by the cancer), removing it could restore my health. If not, and I truly have full-blown Hashimoto’s Encephalopathy, then I’m running out of road. The treatments work less each time. So yes — strange as it sounds — I’m rooting for cancer.
One might think the whole-body scan results would be good news, and maybe they are. It’s possible that the last radiation treatment helped. But it’s more likely the cancer has mutated into a form that no longer absorbs iodine. If that’s true, my options are limited — and my life expectancy about a year. Two years ago, we found recurrence only on a PET scan, so we already know it’s heading that direction.
If the PET scan comes back positive, I’ll need to look hard at my choices. I don’t know if I can handle more RAI given how my neck reacted last time, and if the cancer has mutated, RAI won’t help anyway. Surgery could be an option — but only if the cancer is localized. A full neck dissection would remove not just fat and lymph nodes, but also muscles from my neck. I don’t know if I could live with that level of constant pain.
So the waiting continues. I plan to see my primary care doctor soon to help me find someone new — someone who truly understands steroid therapy and how to monitor it. Then, on Friday, I’ll see what news comes next.
I’ll write more then.
—Odell
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