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

Brief Case History for New Endocrinologist I’m meeting a new endocrinologist on Wednesday. Here’s the short case history I wrote up, since my treatment primarily affects the endocrine system. Overview • Apr 2009: Paraneoplastic syndrome worsened—needed a cane, brain fog, sleeping 12–14 hours/day. • Jul 2009: Began steroid pulse therapy (IV prednisone 1000 mg). Rapid symptom relief, but effects faded within weeks, so moved to 1000 mg IV every 4 weeks. Response and drift The infusions initially relieved most symptoms. By mid-Nov 2009 I relapsed for a few days before the next infusion; similar in Dec. We added extra pulses every 12 weeks. Over time, BP/pulse spikes lessened (by May my BP was 90/50 two days post-infusion), and benefits decreased: more stuttering/slurring, right foot turning out, odd shoe wear, blisters between big toe and ball of right foot. Gait video showed ankle turning in and poor lift; new shoes with extra arch support helped. Post-infusion illness Two day...

Late September Testing Update For the week of September 27, I underwent a series of tests to see where things stand with my thyroid cancer. Sept 27: Blood work, a Thyrogen injection (artificial TSH to stimulate any thyroid cancer cells), and a neck ultrasound. Sept 28: Second Thyrogen injection. Within hours my voice became very hoarse. Nurses, doctors, and my own searches haven’t seen this listed as a side effect. Sept 29: PET scan and 3.9 mCi of radioactive iodine. Oct 1: Whole-body scan. Lab results: TSH is where it should be (0.03). Free T4 is 1.3 (slightly high). The troubling number is Thyroglobulin (TG). Four years post-thyroidectomy it should be 0; anything >10 suggests recurrence. Mine is 81. I thought my prior TG was 40 (which would be bad because it’s rising), but the only value found in the system was 160 (which would mean it’s falling). Either way, only thyroid cells make TG, so something is still out there. Ultrasound: No changes from six months ago. Wh...

Posted late 2010 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 o...