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

Christmas Letter 2011  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 that I am writing this letter at all. Last year I did not think I would make it to this Christmas — but you never know. If I had to give a name to the year that is ending, I would call it the year of change and anxiety . After I mailed last year’s Christmas letter, I received news that my Pater Seraphicus , Weaver Stevens — my Teacher, Mentor, Spiritual Guide, Guru, 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 very thankful for all the writings he left behind, 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 was something he said to me over twenty ...

The Results are in for the cancer! I would like to write a report on all the things that have been going on medically with me since September.  But I do not have the energy right now.  So I will limit myself to my cancer. I have now had blood work, CT scan, PET scan, whole-body scan with radioactive iodine. Today I met with my doctor.  I was nervous about this meeting because my doctor had given me a 45-minute block of time instead of the normal 20.  I tried to calm myself by saying that when they made the appointment they did not have the test results yet, so he did not have reason to think I would need more time.  Turns out I was right and wrong.  He had given me the larger block of time because he expected to have bad news and would need the larger block of time. The results, however, proved him wrong.  The whole-body scan showed nothing.  I do not know if I agree with that — I saw the scans while they were being taken and could ...

Just another day in the ER! For some time now, I have been wanting to make a post about how I am doing since I started my IVIG treatments, so I will do that here and bring you up to speed on what happened today as well. Monday, August 15, at 6:30 AM, I found myself in the ER of my local hospital. I was there primarily because I was having a very difficult time breathing. This had all started last Thursday when I noticed that I was having trouble speaking. My voice was hoarse; for the last year I had been having bouts of hoarseness, so I was not overly worried. Friday, I was still hoarse and noticed that I was having problems breathing—nothing major, just that it took more effort than normal to breathe. Again, this was something I had been dealing with for several years, so I noted it but did not do anything about it. Saturday, I was feeling worse and having a very hard time talking. Sunday, it got very bad; I noticed that when talking or eating, I would get very short of breat...

The Blood work is back and it’s Not Good! I just heard from my doctor’s office, and my most recent TG (Thyroglobulin) level is back. It’s 148 — up from the test they did in June (130) and up from the test last September (81), which was one of the lowest levels I have received since they started testing me. Thyroglobulin in the blood is an important laboratory test for checking whether a patient still has some thyroid present. The value of a serum Tg measurement lies in the fact that Tg can only be made by the thyroid gland — either the remaining normal part or the tumorous part. Normally, after a thyroidectomy, the TG level goes down to zero. In the five years since mine, the TG level has never gotten anywhere near zero. So we knew that somewhere in my body there were still some thyroid cells left behind. This is despite the fact that I have had three rounds of radioactive iodine, but we could not find those cells on any of the imaging studies they have done. As long as the ...

My Intravenous immunoglobulin (IVIG) experience days 1, 2, 3 Day 1 1 st , I should say that each person will have a different experience, but this is what happened to me. I am getting Intravenous immunoglobulin (IVIG) because I have an autoimmune encephalopathy — in my case we think it is Hashimoto’s Encephalopathy (HE) or steroid-responsive encephalopathy. I have been on intravenous methylprednisolone for nearly two years, but as time has gone by my symptoms have been getting worse, and it was finally decided to move me from methylprednisolone to IVIG. I must say I was not prepared for what lay ahead when I walked into the infusion center. I had done a little reading on the treatment, but nowhere did I read that before they started the IVIG, first I had to have IV Benadryl. It was explained to me that they would start the IVIG at a very slow rate of speed, then after half an hour increase the rate, and increase it again every half...

A Scary Night Last night I was lying in bed reading when I felt a pop in my head (on the left side). Suddenly the foot of my bed sprang into the air while the head sank into the ground. It took all my considerable powers of concentration to convince myself that my bed was not spinning through the air and that this was some new symptom of my condition. When my bed landed, I found that it was still slowly spinning and my limbs were all numb and very weak. I just lay there for half an hour while my book continued to play, and I thought about calling an ambulance. But I knew there was nothing they would do except charge me a large amount of money. So I lay there until I felt strong enough to get up and update my contact list’s ICE (In Case of Emergency) entry. It is now a little over a week since I returned from the Mayo Clinic and nine weeks since my last steroid treatment. My condition is getting worse by the day. I met wi...

My (1st) Trip to the Mayo Clinic. To begin at the bottom line: it has been decided to stop giving me Methylprednisolone (steroids) and instead try treating me with Intravenous Immunoglobulin (IVIG). IVIG is a human blood product. Basically, the two treatments are similar— both try to override my immune system and stop it from attacking my brain. Prednisolone is (sort of) an artificial form of immunoglobulin. The difference is that Prednisolone is man-made (in a lab) while Immunoglobulin is man-made (in someone’s body). IVIG does not have the side effects of Prednisolone, but costs a lot more and takes more time to infuse. The plan is, as soon as my insurance company approves the treatment, to give me the treatment for three days in a row, then once a week for twelve weeks, and see how I am doing at that time. How was the trip? It was a trip. I feel like I have been to the Vatican—there in the middle of the cornfiel...

The Guard was Asleep.(A Good Friday Story) It had been a long day; he was up with the sun, and then when he thought he would have a night of enjoyment, he and his unit were ordered to stand by for a special assignment. After waiting for what seemed like forever, they were marched to a nearby park. There, with the help of a trader, they arrested a radical and took him away to meet his fate. They took him to the jail and told the guard to make sure he did not escape. Now the guard was asleep. In any army in the world that would have meant death! But on this one night, the guard was safe — no harm would come to him, because the prisoner would not escape and would wake him before anyone found him asleep. Yes, the guard was asleep, but was quite safe, because the prisoner loved him and everyone. For the radical was the Son of God, who came into this world to save sinners — even the man who would nail him to the cross later that day. — Odell Sneeden Hathaway III Previou...

A Prayer for Maundy Thursday Dear God On this day when you were turned over to face death on the cross, let us remember that only you are God and only you can say what is bad or good. Help us to remember that the evil done this night led to the greatest good that mankind could ever have wished for. It is only our ignorance that makes us condemn those who killed you instead of praising them as the heroes who made Easter possible. Only you know how you perceive them, and us. So help us to know that we are here to love you and one another — not to condemn, but to love. The love that Jesus showed us every day of his life and death. Amen — Odell Sneeden Hathaway III Next: Guard Was Asleep (Good Friday Story) Previous: Grace (Prayer for Meal Times)

My search, my Journey to the Mayo Clinic Preparing for the Mayo Clinic When I last wrote, I mentioned that I had contacted two doctors who were said to treat this condition. Unfortunately, neither of them replied. So, I began reading medical journals and reached out to several of the authors of studies I found. Two or three of them responded, advising that the best place in the country for this kind of case is the Mayo Clinic. I also found several articles written by Mayo Clinic doctors, but the clinic’s website doesn’t provide a way to contact them directly. So, I called the clinic and scheduled an appointment. I was honestly in shock — I had imagined flying in one day and out the next, but they told me to plan for a stay of five to seven business days, and that was before I even spoke to a doctor. My insurance covers care at the Mayo Clinic, but not travel, lodging, or food while I’m there. I had hoped they would review my chart and order any needed tests before asking me to c...

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...