I am unlucky...that's putting it mildly but it's unfortunately true. First, I had NHL and was treated with chemo, which is a natural treatment option for cancer. It turns out that the Adriamycin in the chemo regimen can cause post-treatment MDS and I'm just that unlucky one to have it happen. Adriamycin is a pretty nasty chemo drug (aren't they all?) but this one they really watch to make sure patients don't have a bad reaction. I never liked that Adriamycin stuff anyway, it reminded me of that Adriana character on the Sopranos (Christopher's girlfriend). She was pretty unlucky too. In my case, I have a weird-to-treat "9/11 T chromosome" type of MDS, which is not the "standard" MDS so a little harder to treat. Unlucky me.
My brother is not a match. Today's doctor asked if he was a half-match and I don't know the answer so I've got to contact NIH again to ask for all of my records in the last month so I know exactly how much an "un-match" Michael is. I met with Hopkins today and they do half-match transplants, or haploidentical, and they also do matched unrelated donor, or MUD, transplants. However, their program is geared more towards the haploidentical transplant. Dr. Gore was very personable and I liked him very much. He's going to present my case to the team tomorrow to see what their consensus is for treatment.
I have a couple of options at Hopkins. Their goal would be to get me treated and into remission from the MDS prior to doing any transplant. The first would be taking Vidaza on an outpatient basis at Shipley Hospital, which is closer to home, for six months until remission is achieved. The second is going for the gusto and treating me with hard-core chemo for a month at Hopkins prior to starting the transplant (bye-bye hair). There are pros and cons to both. Obviously, with a six-month treatment on an outpatient level I could continue to work and live "normally". However, is that really going to kick MDS to the curb later when I undergo the transplant? I don't know if going the "soft" route is what I want to do. On the other hand, what if the hard-core chemo makes me really sick prior to transplant and I don't recover enough to do the transplant? I didn't handle chemo really well the last time and was down for the count with low WBCs and RBCs all the time. Then there is the other side where the Vidaza could buy me more time to find that perfect 10/10 match. The doctor's concern is that this "thing" could rear it's ugly head at any time and become leukemia and then it's harder to treat. I don't want that either.
I meet with the doctors at MD Anderson in Houston in September. I'm curious as to what their treatment options will be. After MD Anderson, I will need to make a decision soon before something terrible really does happen. I have so much to think about and every meeting with a different doctor gives me new information that only adds to the general confusion. None of this is easy, that's for sure.
The only lucky thing I have going for me is that I have Mike. We celebrated 12 years yesterday with a nice weekend in Ocean City. I'm extremely lucky and greatly blessed to have found someone like him. This can't be easy for him either and I'm grateful that I have him in my life.