Tuesday, June 13, 2017

Here's what I know

I went to NY and met with my old doc, Azra Raza. She's a big deal MDS doc and VERY opposed to transplants. The NY consult was good. She says I don't have abnormal blasts (which leads to Leukemia and was why I had the first transplant) just my old blood, that DOES have the potential for trouble- bad DNA. It's not ideal but she suggests I get blood work every month, a biopsy every 3 months and if something changes, look at clinical trials. She is VERY opposed to a 2nd transplant. The UVA docs say the same thing except I should def consider a transplant if things deteriorate and the clinical trials aren't useful.  James and I like the head of transplants and my UVA hematologist. We go to Texas, MD Anderson, to talk to them on June 25th and check out their clinical trials. Also Dr. Raza reached out to me a few days ago with a clinical trial at Columbia in NYC that might be helpful. So I'm kind of hopeful this will take some time to become critical or, as the NY Doc says, it could stay the way it is. No one has seen anything like this so they are not quick with an instant solution. 
In the meantime I am exercising, juicing, doing lots of EMDR and spending time with my family and friends. We just moved into our new house so there's lots of renovating and unpacking going on, as well.
I'm still processing everything and my head is all over the place. I'm trying to stay in the moment and not freak out with worse case scenerios. Most of the docs feel I have an excellent chance to recover from a second transplant but fortunately that is not a decision I need to make now. If I can wait this out 20 more years I'll be golden!
Meanwhile Thomas is turning THREE in a few months and continues to keep me focused on fun and love. He is really really really beautiful and smart and adorable and perfect. A lot like my sons. James  as always, is by my side, keeping me focused, talking with Doctors and making me juice. My friends and family are a constant source of power and love. Here's a picture of Thomas waiting for pancakes!

Thanks for holding me in light and health.

1 comment:

  1. Thanks for the update friend! Loving you huge. Lunch again soon please! xoxo