Friday, March 07, 2008

Mystery solved: Radiation injury to brain

Loved ones: Dr. Forman came in yesterday afternoon and informed us that he neurology "tissue committee" met yesterday with a crowd of pathologists who specialize in brain pathology and they concluded the same thing Mason and I figured out (via net surfing on phrases we had picked up from the doctors) to be what is going on in John's brain---good brain cells are being damaged by the radiation he had May-June 2006. Dr. Forman calls it "radiation injury" and from what I have read, it is not good. It typically occurs 6-24 months after whole brain radiation and risks are highest with folks under 2 or over 50 and/or people who have had chemotherapy after the radiation. John had a lot of chemotherapy after that timeframe, both through the spinal fluid and through the bloodstream. What is not typical is that it usually occurs with people who have had more than double the amount of radiation John had. John had 24 rads and the threshold number is 50 rads for higher risk.

Anyway this is what we are dealing with. Symptoms are ataxia (lack of coordination), urinary incontinence, and many other brain-related symptoms John has been experiencing.

Dr. Forman was very upbeat and feels strongly that an 8-week program of hyperbaric chamber oxygen treatments has a good chance of reversing some of the symptoms and arresting the process. Also they will prescribe 2 oral medications, one a blood thinner (as the blood vessels are being damaged) and another one that acts as an extreme antioxident (as the injury unleashes massive amounts of "free radicals"). Basically all of the treatments are like anti-aging treatments. The doctor even recommended that John eat lots of fresh fruits and vegetables and take alpha lipoic acid and N-acetyl carnitine. Dr. Forman has done research on the value of the oxygen treatments for radiation injury and he has had good results with it. He also said there is much skepticism about it as well.

Today Dr. Andersson and his team will visit us and adjust the other medications to eliminate unneeded infection medications for fungus infections, viruses, etc., prescribe the new medicines, and arrange the hyperbaric treatments which will start out with half-day trips from here to nearby Hermann Hospital Monday or so (and continue later in Austin). Also John had a CT scan yesterday of the chest and lungs so they will give us an update on that. I think he has already improved again on the pneumonia but will have to finish out this round of vancomycin. Dr. A's plan is to keep us around here for another week or two and then continue treatments in Austin.

You have supported us sooooo much and we thank you for every single kind word and deed you have done. Two examples from yesterday were 1) a package of 20 or more beautiful cards and written messages Katie Raver arranged from folks we knew (and some we didn't know yet) from their NLP course and 2) tortilla soup for John brought by Hope Lipnick.

We will continue need a lot of support and good vibes plus paid help, as John is still pretty much unable to walk or do things on his own and it will be unsafe for me to leave him alone in the house, at least at first. I am planning to return to work from Houston and Austin, starting with a twice postponed training in Austin on March 17-19. More details about our schedule as it emerges. And I will be asking some of you to help me plan for the next few months.

One thing for sure is that we wish to celebrate our wedding anniversary (March 17) and may postpone a party until we get back to Austin. John is happy that my sister Patti and brother in law Dennis are coming from Albany tonight and will visit here til Monday. Also John's father Myles will be visiting next week. Andrew Bost has been in Houston to work lately and visited us Wednesday, took me to lunch yesterday, and will stay with John this afternoon. Allison Orr is planning to visit and stay with John awhile on Monday.

I am sad, happy to be with John, and grateful for the love that surrounds us. More later.
Love, Anna


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