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

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 ...

Christmas Letter 2009 Dear Friends, It is my custom at this time of year to celebrate with my friends by giving them the gift of self — to share some of what the last year has brought me. If you remember the old Chinese curse, “May you live in interesting times,” I thought last year was interesting. But this year has been a real test, almost beyond any I’ve faced in a life full of challenges. In fact, considering all the events of the last ten years, I’ve decided to write off the entire naughts and move into the next decade with the hope of turning things around and building a new life for myself. While writing the first draft of this letter, I found it so depressing that I had to sit down and rewrite it completely. I could go through a long list of all the horrific things that happened to me in the last 12 months — but this is supposed to be a Christmas letter. I’d rather look at the year in that light. (If you’d like the gory details, I’ve published a lot of them on Facebook, ...

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...