Monday, August 30, 2010

Doctor's Visits

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.

Tuesday, August 3, 2010

To-Marrow, To-Marrow, I Love Ya To-Marrow

First, I stole the title of today's blog from a friend. It was too awesome not to use again. I have officially been diagnosed with a pesky little sucker called myelodysplastic syndrome (MDS) and I'm going to need a bone marrow transplant (BMT) in the near future. My friends Blair and Julie are either registering with the national marrow registry ( or signing up everyone they know to help me out in finding a match. In addition to me, my friend Traci's 13 year old nephew desperately needs a minority match to save his life from leukemia.

Most people, including myself, tend to think that donating marrow is painful but I've found out through lots of reading that most marrow donation is taken through an IV, much like donating plasma, rather than the older procedure where they tap your hip bone. In fact, they take the blood through an IV, separate out the stem cells, and give the donor back their own blood - all in one sitting. I think more people might be willing to donate if they knew it wasn't that bad.

Registering is simple - go to and fill out a simple questionnaire that asks your medical history. Then a couple of weeks later you're receive a packet with some cotton swabs. It takes about 2 minutes to swab your cheeks. Then you send the swabs back to the registry program. It's THAT simple. If you are already registered or regsitered a long time ago, you might want to call the National registry people to make sure your contact information is up-to-date so they can find you if they need it.

I know I would appreciate it and I'm sure Traci's nephew would appreciate it too. He was on tv last week looking for a match. All he wants to do is get better so he can play football next year with his high school team.