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

New Doctor 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 I 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 ill...

So what did all the test show? 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. W...

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 of what’s called a “...

Why can’t we make time go faster? I was talking on the phone with my sister while she was driving my nephew to an appointment. He’s about six. I won’t tell you how old she was. He kept interrupting, asking how much longer it would be. Finally, he said something that stopped me: “Why can’t we make time go faster?” After we hung up, I realized I hadn’t really answered his question. Most adults might say, “Because,” or “We can’t.” But I wish I had told him that there is a way to control how time feels — and it’s simpler than most people think. The problem is that time works backward. If you try to make it go faster, it slows down. If you try to slow it down, it speeds up. Remember the old saying: a watched pot never boils. That was not an easy lesson for me to learn. In school, I would sit down to take a test and rush through it, constantly checking the clock in a race to finish before time ran out. Most of the time, I lost that race. Then one day I tried something ...

I'm starting to write a new chapter in my life, but I need a leading lady! Posted early 2010 One of my deepest pleasures is simply showing the woman I love that I love her. I’m affectionate and take time to show I care — listening, holding your hand, and, when I step on your toes, saying I’m sorry and meaning it. (Yes, I was taught that love means always having to say you’re sorry.) I’m a remarkable person — just ask anyone who knows me! They’ll tell you I’m funny, intelligent, romantic, shy, honest, spiritual, dependable, and above all — different. I enjoy peaceful pursuits like dining out, cooking at home (I’m a great cook!), watching a movie, going to the theater, taking long walks, holding hands, and gazing into someone’s eyes. I love an early-morning swim when the pool is empty, or listening to the rain while watching a fire and holding you close. It all sounds good to me. The last few years have been a time of trial and growth. They’ve given me a new respect for who...

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, ...