Friday ~ 23 April: Day 280

I haven't posted a medical update in quite a while, so let me catch you all up on where things stand. First and foremost, I continue to improve. During March I was still having to spend most of my time in bed. My shoulders remained in intense pain and I was on oxycodone every 4-6 hours round the clock for that. Liver functions remained high, but my red counts, white counts and platelets continued to maintain and improve.

In late March Mike and I went to The Monroe Institute for their Professional Division meeting. It was my first time to go anywhere since we got home from Nashville in October and I was really using the trip as a goal to meet in getting better. TMI is located in the Blue Ridge Mountains of Virginia and I always consider it a retreat when we go there. I have used several of their Hemi-Sync CDs during my whole illness and transplant process. Those have been extremely helpful to me in meditation, sleeping and healing. I am actually not sure how well I could have coped with a lot of the stresses of the MDS and transplant without them.

This trip was one of the most productive for me healthwise. While there I had two deep tissue massages from a masseuse who also does energy work. A friend of mine, Patty Ray Avalon is one of the residential trainers at TMI, as well as an artist and energy healer. She was formerly on the faculty of the Barbara Brennan School of Healing. One evening Mike and I went over to her home and she did an energy healing session for me. That was one of the most amazing healing sessions I've ever experienced. I also met Theresa Bullard. We've known her Mom, Barbara, for some time, but this was our first time to see Theresa. She is a doctor of physics who also does energy DNA alignment. It seemed fortuitous that we should run into each other, so I also did a DNA alignment session with her before we came home.

The results of all this were amazing! I stopped needing any oxycodone after my session with Patty and have not needed it in the month since. After being on this narcotic for some 18 months, this is wonderful. Also, since I've been home I have been able to get up and get dressed almost every day. I've been able to start cooking some again, as evidenced by the flurry of blog posts this month. I have to take it slow and easy, doing some things, resting and then doing some more things. But it's so much fun to be able to be in the kitchen again.

Now not every day is wonderful. I'm still having a lot of joint pain, particularly where my legs join my hips. That makes it difficult to stand and walk. The only way to sit comfortably for more than a few minutes is on the bed or sofa with my legs stretched out in front of me. I am also staying very tired. If I go to the grocery store (and I've only been a couple of times) I must park in the handicapped spots and ride around in the motorised carts. Both of these things are symptoms of excess iron. Because I had over 100 red blood transfusions, I took in a lot of iron that has nowhere to go, so it stays in my body. This is not a good thing. Excess iron damages organs and joints. Two of the top symptoms of excess iron are joint pain and chronic fatigue.

The doc in Nashville has been having me get blood tests every two weeks and we've been adjusting my medications since November to see what kind of reactions I experience. It's all a juggling act and quite complicated. We have to be sure the Graft vs Host Disease of my liver is under control before I can start on Exjade - the drug that will bind to the iron and get it to pass from my body. Also, before I can start the Exjade, I had to have a baseline audio test, because extended use has been known to damage hearing. (Pretty good news there! Loud rock concerts of my youth and driving a convertible for years only resulted in a small loss of higher treble tones in one ear. Otherwise I did well.) I also have to be cleared by the eye doctor. When I last saw her, she saw no more evidence of Graft vs Host Disease of my eyes, but wanted me to continue the Restasis drops for the full six months and see her again. I have developed cataracts from all this and will need to have lens replacement surgery for that in the somewhat near future. That will be after the first year post-transplant, but we don't know exactly when yet.

So where I stand today: My liver functions are remaining high, but stable. This is likely due to both the GvHD and the elevated iron levels. I go back to my transplant doctor on Wednesday of next week. He says he will give me the prescription for Exjade then. I will remain on Gengraf, an antirejection drug, with no change in dose. I will also remain on the anti-viral and anti-biotic drugs. All this means my immune system remains compromised, so I must continue with all the precautions that go along with that, including wearing my mask when around groups of people, avoiding anyone who is ill, etc. I will have a Pentamadine treatment (the breathing tent with the medication to help prevent PCP pneumonia). On Thursday I see the eye doctor, for hopefully my final visit regarding Graft vs Host Disease of the eyes. If all is well I will stop the Restasis drops.

I again want to take this opportunity to thank all of you for your healing thoughts, prayers and good wishes. They continue to mean more to me than I can ever express. I know that these are the things that have truly helped so much with my healing.

I also want to thank each and every person who donates blood or volunteers to be a bone marrow donor. You may not realise it, but you save people's lives every single day. Yesterday DD#2 was so proud to be a blood donor for the first time. They had a blood drive at her school and the Red Cross will now let 16 year olds donate with parental permission. She wanted to do this all on her own with no input from us. Another reason I am proud of her.


namasté,


P.S. In my blood tests last week my red count, white count and platelets were they highest they have ever been, according to the records we have. Better even than when I was in my 20s with no idea of what was to come. It really is a miracle.