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

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 ...

Here we go again. AGAIN!!! Posted Monday, January 5, 2009 at 6:34 PM My Endocrinologist (thyroid cancer is treated by endocrinologists, not oncologists) called me today. The results of the total body scan are back. The cancer they just removed was on the right side of my neck. Unfortunately, they’ve now found cancer on the left side of my neck—and worse, in my thyroid bed. They’re still deciding what to do next. Hopefully (though not likely) the radiation will take care of it—though this test was supposed to confirm that it already had. The good news is there’s no sign of cancer anywhere else (though I’ve heard that before). As long as it’s confined to the neck, there’s a good chance of surviving. The biggest concern is the recurrence in the thyroid bed, since I’ve already had surgery there. The main risk of the first surgery was damage to the nerves controlling my vocal cords. This time, the staples left behind make it very likely I could lose the ability to speak...

A post opp update Posted Tuesday, December 2, 2008 at 3:58 PM Well, Tuesday I had my surgery and now I’m well on the road to recovery. There were no major surprises—“everything seemed to go well,” according to the surgeon. I was rolled into the OR at 3:00 PM; by 7:00 PM my surgeon was updating my parents, and by 10:00 I was in my room. The staff seemed surprised at how well I did. They kept waking me to ask about pain, and I kept telling them I wasn’t in any. All I really wanted to do was sleep. Around 2:00 AM I woke up and asked for something to drink. I’d been told the most important thing was to get up and walk as soon as possible, so by 3:00 AM (12 hours after surgery started) I was walking the oncology corridors, listening to other patients’ screams. I don’t know whether to feel lucky I’m not that bad off—or worried that I could get that bad. Wednesday morning I had pancakes while I waited to see my surgeon. I was told to expect a two-night stay, but when the surgeon s...

Christmas Letter 2008 Dear friends, It’s my custom this time of year to share the gift of self—to tell you a bit about what the last year has brought me. The happiest surprise was finding Facebook and reconnecting with so many friends. If you’re not on it, I recommend it—it feels more “grown-up” than other sites. As for the year itself… you know the Chinese curse: “May you live in interesting times.” That about covers it. But here’s more. The year began bittersweet. On Christmas Day I looked up from writing and saw snow—a light dusting, but still snow on Christmas. I was thrilled, then sad, thinking how much Linda would have loved it… or how our never-born children would have loved it. In February my old friend Mike Auerbach (since 2nd grade) visited to give me “hanging out” lessons—skills he thinks I’ll need to meet someone new. I wasn’t a great student. I’m following my mentor Weaver’s advice instead: “No hurry. Let the right woman find you. Make yourself beautiful wit...

Back to Knife Dear Friends, This morning I received a phone call from my Endo (Endocrinologist). He told me that the results of the MRI are back and that the growth is 1.2 x 10 mm. This is slightly larger than what can be treated with radiation alone, so I’ll (unless they change their minds again) be going under the knife — again. My Endo said, “We want to scrape out whatever we can before the radiation.” That doesn’t sound like fun to me. I have an appointment with my surgeon — the same one who did my last surgery — on Monday. He does good work (although he could use a personality transplant). Last time there was very little pain, and it healed well (see the pic). This week I also received my copy of the pathology report. This time it indicates that they found architecture of both papillary and follicular thyroid cancer. Last time it was only papillary cancer. Follicular is a much more aggressive strain. I asked my Endo about this, and he told me that I’m still considered to ...