Over the past several months I have noticed a decreased range of motion and significant pain in my right shoulder. The condition has gotten increasingly severe. I went to the Methodist Sports Medicine Clinic several weeks ago and was examined by one of the team physicians for the Houston Astros. Dr. J ruled out a rotator cuff tear. Instead, he feels that I have adhesive capsulitis which is commonly known as “frozen shoulder”. It’s a painful condition which will resolve itself but usually takes one to two years to fully resolve. It is sometimes seen in patients who spend a great deal of time in a hospital bed or who have undergone chemotherapy. To help with my recovery Dr. J gave me a steroid shot in my shoulder joint with the longest needle I’ve ever seen. I have been working on rehabilitating my shoulder since then. I see some improvement in my range of motion and decreased pain so the steroids must be working.
Yesterday was a long day at M.D. Anderson. My blood test in the morning revealed that two of my liver enzymes have continued to escalate. On top of that, I have developed an itchy rash on my upper torso, very dry and scratchy eyes, and brittle splitting fingernails with pronounced ridges. All of these are indicators of GvHD. GvHD is a condition which often arises after a stem cell transplant. My new immune system apparently is mistaking my liver, skin, and other organs for foreign invaders and is attacking them. GvHD is common after a stem cell transplant and is sometimes fatal, especially if not treated aggressively. I had hoped to avoid GvHD and had beat the odds until this week. Now I have to deal with it. GvHD is a mixed blessing. On the one hand, it is a painful and potentially fatal condition. On the other hand, mild GvHD like mine is a sign that my brother’s immune system is different enough from mine that it might do a better job of recognizing the leukemia cells than my immune system did. Apparently people with some GvHD have a lower rate of relapse than people who suffer no GvHD so I will remain optimistic.
Dr. C decided to put me back on Tacrolimus, an anti-rejection drug designed to tamp down the new immune system to decrease the effects of GvHD. Tacrolimus has a host of side-effects but I’ve managed to deal with those in the past so they don’t worry me. Dr. C is also concerned about a deep cough I developed over the weekend. He sent me over to the Mays Clinic for a chest X-ray. I don’t have the results of the X-ray yet but I suspect I’m just suffering from seasonal allergies.
This has been a tough year for both Mary Pat and me. We’ve spent the better part of the past 9 months in hospital rooms and hospital waiting rooms. We’ve had to wind down our law practice, find new homes for our clients, sub-lease our office, move to a new apartment, and deal with our new lifestyle which swings from me being relatively healthy to very neutropenic and isolated at home every few weeks. We’re hoping 2017 will be a better year for us and for all our friends and relatives.
Sounds like a tough week in the midst of a very tough year. Robert and I send you lots of love and good thoughts, and we’re sending up fervent prayers! Martine often asks us how you’re doing. She just had a paper she co-authored published in Lancet Oncology. You are so good to share your story with all of us! Thank you so much, Richard!
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Thanks Kathleen. Tell Martine I appreciate her asking after me and congratulations on getting published. I read her paper. I think that individualizing cancer treatment by cell type is the way of the future so she and her colleagues are on the cutting edge. I am sure that you and Robert are rightfully proud of her. My youngest son Matthew is working as a research assistant at Baylor College of Medicine. His team is doing research work on genetic links in diseases that have no known cause.
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You and Mary Pat are in our prayers, daily. 2016 was a truly awful year, but i believe 2017 will be the beginning of a healthy life for you. I hope your shoulder continues to improve each day. I would like to wish you and Mary Pat a very Happy Thanksgiving! God bless you both!
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I have been checking daily for an update. Hang in there….I agree…maybe your brothers immune system is so good…it will go to “battle” in a heart beat….and thats a good thing. We are so blessded to have met you. I have learned a lot and continue to….as always….hugs to you and Mary Pat! 😉😉😉🙏🙏🙏👼👼👼
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