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...