Good news and bad new sort of!
Posted late December 2009
Yesterday I had an ultrasound of my neck and met with my endocrinologist. (For those who don’t know, thyroid cancer is treated by an endocrinologist, not an oncologist.) She had some good news to share.
My TG level—the antibodies my body produces to fight thyroid cancer—has dropped from 138 to about 40. Unfortunately, that number should be zero; anything above 10 still indicates the presence of cancer. So it seems my body isn’t fighting as hard—possibly because there’s less cancer to fight. The ultrasound and CT scan didn’t show any new growth, and a few of the spots we’d seen before have actually gotten smaller. So, on the whole, this is good news.
Unfortunately, that doesn’t explain why I’m feeling worse even as the numbers improve. Below is an excerpt from the report I gave my doctor during the visit.
How am I doing?
Most of the time I don’t feel well, and my new definition of a “good day” is one where I don’t need a cane to walk. Since my last visit (and the radiation treatment a week earlier), I’ve had increasing pain in my neck. Both the right and left sides have developed tender spots that weren’t there before, and my right shoulder has grown weaker near the base of the neck. There’s also pain and weakness along the incision line. I often find it difficult to hold my head up—something that’s been happening more often lately. In addition, I have a spot in my right breast that occasionally hurts. These symptoms don’t seem to respond to the steroid treatments and didn’t appear until after the radiation in September.
I’ve also started developing debilitating headaches that radiate from the left side of my neck and climb up my head. At first, I thought they were related to exercise, but now I get them even when I haven’t been working out (I’ve stopped that entirely). They feel somewhat like spinal headaches—changes in position or movement make them spike to a 9 or 10 on the pain scale for several seconds. When they hit, I can’t think or focus my eyes and often have to leave work.
The steroid treatments aren’t working as well as they did at first. About three and a half weeks after my October 23 treatment, my right side became so weak that I needed a cane to walk again (November 17). Other symptoms worsened as well. I had another treatment on November 20 and regained the ability to walk. Two weeks later, I relapsed again (December 6), and for a short period I couldn’t open my right eye—something that had never happened before. After consulting with Dr. Prin, I underwent another three-day treatment (December 16–18). I’m not sure if that latest treatment affected my TG level, but I can still walk—though my fatigue is awful. I’m sleeping around ten and a half hours a day and barely have energy for anything beyond work.
As for the neck pain and headaches, my endocrinologist thinks they could be side effects of the radiation. As the radiation continues burning away and killing the cancer over several months, it can scar the neck muscles. She’s ordered physical therapy to help with that.
As for the neurological problems—fatigue, partial paralysis, confusion—they stem from my Hashimoto’s Encephalopathy (HE). The question now is whether the HE is being triggered by the cancer (which would make it a paraneoplastic syndrome) or whether it’s a separate disease altogether. Either way, the news isn’t encouraging.
HE is considered a fatal condition with frightening complications. So far, I’ve been one of the mildest known cases in history. But if it’s being driven by cancer we can’t locate or treat, it will continue to worsen. If it’s not related to the cancer, there’s no cure—only treatment through steroids. That would mean switching from monthly IV therapy to daily doses, with all their long-term side effects.
The plan for now is to begin physical therapy, slightly reduce my thyroid replacement dose (since both too much and too little can cause fatigue), and follow up next month with my neurologist about next steps for HE. In three months, I’ll return to the endocrinologist, at which point they may order a combined PET/CT/whole-body scan to try to locate the remaining cancer.
On a personal note, the Christmas season has been especially difficult. Being alone has made me realize that I want someone in my life again. I’m nervous about that—it feels unfair to ask anyone to start a long-term relationship that might last only months. But then again, it could last for years. There are no guarantees. I just hope that whoever I meet will see me as a person, not as a patient. I’ve decided to take the chance and have posted a new profile on Match.com.
Well, that’s where I stand.
—Odell
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