How I See It: Reflections on spirituality, technology, and the art of everyday life

Well, how am I? Thanks for asking. It’s been a hell of a summer. When the season began, I needed a cane to walk. My blood work showed that my thyroid cancer was still active—but it couldn’t be located anywhere in my body to remove. I was also facing a long list of medical procedures and tests. Now that most of that is behind me, I can say I’ve seen major improvements… and received some, in my opinion, bad news. So I’m doing as well as I can. At the end of July, I had my first steroid treatment. Instead of a pill or shot, I received an IV bag full of the stuff. Within minutes of the infusion starting, I could see dramatic improvement—my smile returned somewhat, I had better control over my facial and right-side muscles, my fatigue lifted, and my mind cleared. I’d hoped the results would last for months, but it turns out I need to repeat the treatment every four weeks. So every fourth Friday I go to the infusion center and get another dose of steroids. September was the bigg...

What my Doctor had to say! Posted August 15, 2009 It’s been two weeks since my last treatment. Unfortunately, I’m already showing signs of relapse. My eyes are drooping more, and it’s getting harder to keep them open when I yawn or smile. On Tuesday, the numbness in my right leg returned—though thankfully, it hasn’t affected my ability to walk. On Thursday I met with my neurologist for the first time since treatment. She was shocked at how much I’ve improved since she last saw me. She told me that, because of the progress I’ve made and the likelihood that I still have thyroid cancer, what I’m dealing with is probably Paraneoplastic Syndrome —a condition caused by the immune system’s response to cancer elsewhere in the body. In other words, my immune system is producing thyroid antibodies to fight the cancer, but those same antibodies are attacking my nervous system. I asked if that meant I have Hashimoto’s Encephalopathy. She said that since my immune response has a known tri...

A note about my Treatment Posted mid-2009 I wanted to update you on how my treatment is going, but first I should review where things began. In April my health took a major turn for the worse. I developed extreme fatigue and partial paralysis on my right side. I saw both my endocrinologist and my neurologist. The neurologist believed I had advanced brain cancer, while my endocrinologist continued looking for a recurrence of my thyroid cancer. My thyroid hemoglobin (TG—thyroid autoimmune antibodies) count is elevated, indicating recurrence, but ultrasound, PET scan, and needle biopsy all failed to find it. The Thyroid Tumor Board at OHSU has recommended another round of radioactive iodine in hopes of eliminating it. That recommendation came before neurology’s latest test results were back. As for brain cancer, I’ve had about ten MRIs in three years, all clear. The spinal tap also showed no sign of cancer. For three years I’ve believed I might have a condition called Hashimoto’s...

What the Neurologist had to say Posted mid-2009 A little over a month ago I began having more trouble breathing, my fatigue worsened, and I developed what my doctors describe as partial paralysis on the right side of my body. It feels almost like I’ve had a small stroke. The doctors were convinced it was advanced brain cancer, but the MRI showed nothing. Today I met with the neurologists. I’ve spent the day trying to process what they told me. Frankly, I’m not pleased—though I do think they’re doing their best. The MRI is clear, and my tonsil isn’t the cause. What is? They still don’t know. But they’re almost certain it’s a form of Paraneoplastic Syndrome —an autoimmune disorder triggered by the presence of cancer in the body. It’s extremely rare in thyroid cancer, and there’s no standard treatment. We’re currently considering three possible treatments: intravenous Prednisone, IV Gammaglobulin, or Plasmapheresis (where antibodies are filtered from the blood). Before any of the...

Something new. (Medically) Posted Friday, April 17, 2009 at 4:21 AM I just wanted to keep you all up to date on my condition. I shared this on several thyroid cancer sites to see if anyone has experience with what’s happening to me. On April 6th, around 2:30 or 3:00 in the afternoon, I suddenly felt exhausted—not sleepy, just weak—and couldn’t concentrate. The next morning I felt better, but that afternoon it happened again. Since then the weakness has started earlier each day. Now I wake up feeling weak and get weaker as the day goes on. I’m experiencing weakness, tingling in my hands and feet, headaches with exertion, dizziness, and trouble concentrating. I can’t do many of my normal activities—journaling, evening meditation, reading, or climbing stairs. My endocrinologist checked my TSH level; it’s 0.25, so I’m not hypothyroid. My GP believes this may be Paraneoplastic Syndrome, possibly Myasthenia Gravis. Paraneoplastic Syndrome occurs when cancer causes the immune syst...

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 brea...

Does anybody know how I can get in touch with Dr House? Posted early 2009 I just spoke with my Endocrinologist. Here’s how this works: the only part of the human body that stores iodine is thyroid tissue—or, if you no longer have a thyroid, thyroid cancer cells will absorb it. So, a week after I took the radioactive iodine, any place that still showed radioactivity had to be cancer. That’s why they ran the total body scan. Ideally, after a week, all the cancer would have been burned away. The scan showed six “uptake” spots in my neck: three on the left side, one in the thyroid bed, and two on the right. The two on the right worry me most—because that’s the side where all the fat and lymph nodes were removed. Yet cancer still shows there. During the original surgery they found cancer in the lymph nodes, parathyroid, thyroid, and skeletal muscles. The thyroid bed is also risky; another surgery there could threaten my voice. In December I had a modified neck dissection on the ...