So Jittery

I've been wanting a transplant for so long and like Arpine said, sometimes you get nervous when you get what you've been asking for. It's true. Like when you wait nine months for a baby and then it arrives and you're all thumbs. But, just like with babies, it's one day at a time. 

We've scheduled a phone call with Marty for tomorrow. I'll be on the line with Andy, Susanne, and Amal. Susanne has lots of good questions. About FLAMSA, about RIC, about outcomes, and about Thiorizadine.  The docs don't seem to be behind this it's not been through any trials for cancer even though it has been an approved drug since 1978. 

Susanne thinks the doctors in England really have their hands tied and I should go to NY for a year.  The whole incident with the Azacytidine is a good example. Using it like I did, at Marty's suggestion, to take it for ten days, is not even licensed in England for that use. The only way I could do it was because my American health insurance approved it. 

Susanne also says that in the paper Panos sent us to read, with a FLAMSA transplant, the outcomes are the same whether you have 6% or 90% disease. So why did I do the Azacitadine? Why didn't I just go to transplant? Panos said that I can not do a RIC (reduced intensity) transplant even if my counts go less than 5% because in England it's required as well that you have perfect bloodwork (platelets etc...). He said it's true in the US too. So that's a question for Marty...

So what about the Thiorizadine? Do I just do it? Like next week? Just get some, find a psychiatrist to monitor me, and just do it? 

These are such giant huge jittery decisions. And just like when it was left up to us whether or not to do a transplant, it's now up to us whether I sneak in a trial drug, or go to another country for a year. It's clear that no one else can make these decisions for me. It sure is a shame I didn't go to medical school! 

As we all struggle to figure out what is right, I want you to know that it is not lost on me that I have the luxury of these choices. I have health insurance and money to go to another country if that is what seems the best. I have highly educated friends and a smart organized husband. I have a healthy donor waiting in the wings. Let's just be clear here, without all this, I would be dead.