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

My Search goes Nationwide. Letter Requesting Medical Assistance My most recent attempts to contact my doctor here in Portland have gone unanswered, so I am expanding my search. I have located two doctors—one in Houston and one in Kansas City—who have experience treating Hashimoto’s Encephalopathy, and I am writing to them for help. Salutations, I am writing to see if you might possibly be able to help me. In January 2006, I began developing various neurological symptoms, including facial paralysis, right-sided weakness, numbness, gait problems, and others. Around the same time, I was diagnosed with thyroid cancer. The cancer is being treated, but the neurological symptoms have continued and are getting worse. After being told twice that I had brain cancer, and undergoing multiple MRIs, CAT scans, and other tests (including four spinal taps—three in one month), it was decided to begin treating me for Hashimoto’s Encephalopathy. The treatment involved three days of Methylpredn...

Still waiting Feb 2011 A Letter to My Doctor I’ve been having trouble reaching you to discuss my treatment plan and next steps. I’m not sure if you’ve been receiving my messages. I’ve called your office and left voicemails but haven’t heard back. I understand you’re very busy and caring for many patients, but please let me know how I should proceed. On February 9th, I had the last steroid treatment covered by my current prescription. The next round should be a three-day course on March 9th, 10th, and 11th. I’ll need a new prescription for that and future treatments. I’m not certain who will be issuing these going forward. I saw Dr. XXXXXXX last month. He doesn’t believe any additional treatment for the thyroid cancer is needed right now, though we’ll do more studies in September. He did recommend that I see a new neurologist. I’d like to know if you can suggest someone or refer me to the MS Clinic at OHSU to see a neuroimmunologist—or should I try to make those arrangements myse...

Endocrinology Update This afternoon I met with one of my new endocrinologists—this one focuses on thyroid cancer. We reviewed all my tests. He tells me that the blood work from December looks good. Unfortunately, my thyroglobulin level is about the same as it was in September. Normally, that would indicate persistent cancer, but since my levels have never dropped, it’s unclear what it means. We’ll continue to monitor it, with the next test scheduled for June. As for the PET and whole-body scans I had in September, they also look good. The only concern is a small hot spot in the thyroid bed, but since it shrank between 2009 and 2010, that’s a positive sign. It’s too small to treat, so we’ll keep an eye on it for now. Regarding the suggestion from my other endocrinologist that chemotherapy might be needed, this doctor feels that it is not indicated. We also discussed my neurological symptoms. According to this thyroid cancer specialist, thyroid cancer does not produce the chemic...

Letter updating my Endo  Dec 2010 Medical Update – December I wanted to update you on how things have been going before I see you on the 22nd. As we discussed, I skipped my Prednisone treatment on Oct 22. My next treatment would normally have been on Nov 19, but I postponed it until Nov 24 to allow more recovery time if I had a bad reaction. As you know, I started feeling sick two days after the treatments on: August 27 (lasted about a week) September 24 (lasted about two weeks; never fully regained energy) Before the Nov 24 treatment, my right side was slightly numb but walking and breathing were fine. I responded well—better than early treatments. My numbness went away, my pulse peaked around 100, and I managed 4–5 hours of sleep instead of the usual 1–2. On Nov 26 I slept most of the day, but instead of numbness on the right, my left arm, leg, and face were numb. On Nov 29, while at work, I developed severe nausea, breathing difficulty (likely from the nausea), b...

Christmas Letter 2010  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 with you some of what the last year has brought for me. Frankly, I am very surprised to be writing this letter at all. Last year I didn’t think I would make it to this Christmas — but you never know. If I had to name the year that’s ending, I would call it the year of change and anxiety . After I mailed last year’s Christmas letter, I learned that my Pater Seraphicus , Weaver Stevens — my teacher, mentor, spiritual guide, priest, analyst, and friend — had passed away. Weaver was one of the major forces that shaped who I am, and I miss him deeply. I am grateful for his writings, the videos we made before he retired from the priesthood, and most of all the memories, guidance, and wisdom he shared with me. The greatest compliment I ever received came from him over twenty years ago. I had asked whether he thought I should try to become ...

Grace My God, My Love, My Gift! I humbly ask you, the most wonderful of all beings, who by being sacrificed for me made sacrifice the most wonderful thing to be. Please bless the sacrifice that this meal truly is. Bless the sacrifice of those who gave time, love, and sweat to plant it, harvest it, ship it, sell it, and prepare it. Bless those of us who by partaking of it, make it a sacrifice and those who are sacrificing by going hungry. But most of all bless those who like you died to become this sacrifice. Amen Next: Prayer for Maundy Thursday Previous: Even if there is a God, why do we worship?

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...