(note: Mark wrote this on Tuesday, and I forgot to publish it. Oops, sorry. ~t)

Take what life gives you, use it to make you stronger and keep moving forward

Take what life gives you, use it to make you stronger and keep moving forward

Hey there,

Our St Louis Doc visit was not unexpected. Good and bad news. So lets start with the bad news first and see how it affects me. I am NOT one of the lucky ones, where the transplant will just work, that 25% where everything goes smoothly and at the end of 6 – 12 months I am what they like to refer as cured. Like I said this is NOT unexpected.The irony is that I am in remission, and the doc did use that word. I have 100% Donor cells, and the FISH test came back with NO chromosome 7 abnormalities. Sounds pretty damn good to me. But I also have Chronic GVHD, on my skin and in my gut and they basically told me I could be on immunosupressing drugs for the rest of my life.What does that actually mean to me? Exactly what has been happening to me for the past 3 months. I will continue to get infections… I will continue to have GVHD. The graft (my donor cells) is not “sticking to my bone marrow like it should. It’s producing just enough of the three blood types to keep me going. But the donor cells have not made peace with the host, which is the rest of me. Perhaps they will someday, perhaps not. The doctors sure as hell do not know.But like I said in my last post, my doctors can do their medical specialty and give me pills and treat the symptoms that come up. And from my perspective (supported by the research I’ve read), if this is my treatment plan… To be passive and just take my pills, an infection will eventually kill me, or I will relapse. And as much as I love my doc, he just can’t see holistically. So I’m going back to my health routine before I had the transplant, but with more effort. I have the time now to devote to it.
As you know I am not going to be passive about this. Using a Go with the Flow attitude will slowly “cure” me, or at the very least stabilize me. It did for over 6 years before the transplant. Go with the Flow is NOT passive, take a minute and please see our original blog (http://tealflow.wordpress.com/what-is-the-flow/), and read my piece, “What is the Flow?” ¬†As you can see Going with the Flow is far from passive. And that is a huge positive, I finally have more control of my medical treatment and health.
Mark
PS: We live with this everyday and talk about it everyday. But I realize that when we throw out GvHD, it doesn’t always make sense. Graft vs. Host Disease is when the graft (that’s the donor cells) and the host (that’s Mark) and not in total harmony with each other. The donor cells are living and dividing and creating new cells, but they don’t feel at home yet and see the host as foreign and attacks host cells. And it hits certain areas hard, the digestive tract, the liver, the skin. Don’t ask me why these areas over other areas, it’s just what happens. And while the cells are fighting fitting in, the host (that’s Mark) suffers the consequences. Eventually the donor cells may settle in and decide that the host is not such a bad place to live, then again, they may be stubborn and continue to cause the host problems. A good site for more information and that explains all this is here. The GvHD is what is keeping Mark on the immunosuppresents that consequently put him at risk for infections (thus all the stupid viruses he keeps getting).
~terri

1 Comment

  1. Fight on, Mark!