Will that be Mustard or Mayo with that BMT

Met with Dr. Duvic and the Bone Marrow Team on the 10th and 11th of January. It was not very enlightening! First, Keith and I left Austin at 7am for our 11:00 am meeting with Dr. Shpall (pronounced like the shu in shudder). We get to MDA and they tell us Dr. Shpall won't be in until 1:00 pm. But wait, there are lots of other people we can talk to... So don't go to Photopheresis yet. Ok, we say. And we wait, and wait, and wait. Now they tell us, well go to lunch and come back. We do. We finally get to see Dr. Shpall. It wasn't very informative. She has just started working with Dr. Duvic on BMTs and thus with patients with MF. So she really can't tell us much. [See Keith and Renee's blank faces as they ponder why they are having this meeting.] Then we met with somebody else, I can't even remember now, and finally I got to go to Photopheresis at 4:30 p.m. I send Keith back to the hotel for much needed rest while my white blood cells suntan. At about 7:30 pm I'm finally tanned and taped and ready to go. Wish could say rested, but this trip was not restful at all. The next day brings much of the same. Waiting to talk more people in the BMT department.

Here are a few exciting things I learned:

• It costs $2500 to have your blood drawn and your HLA typing done (that's what they need to determine a match)
• They take 40 ccs of blood for the HLA
• It costs $12,000 to do a search to find a match
• I'm looking for a MUD... a matched unrelated donor... it's because I'm adopted and unless my children are a match they will have to search the world-wide databases which have a membership of over 10 million [We've not told them yet they have to give 40cc's of blood for mom, but what the hey don't we give blood for our kids everyday?]
• And the cost of the BMT is $500,000.

Fortunately, insurance pays for most of this.

Here is more on what Duvic had to say about the BMT: We won't consider doing one until I'm almost in remission. She had done 11 BMT on patients with MF and one has died. I thought she said 4 had died, but Keith corrected me.

Here are my top 10 reasons for NOT having a BMT:

1. 8 weeks of Skin Radiation
2. 2 weeks of Chemo (still never got an answer if that was every day, or what)
3. The possibility of having to shower 3x a day [I don't even like showering once a day... because it's borrrring]
4. Swishing stuff every 2 hours to keep mouth sores at bay [I'm impressed if I brush my teeth once on the weekends... I know too much info]
5. Using a collection hat [if you don't know what that is, you probably don't want to]
6. Keeping a record fluid intake... i hate having to keep records on myself!
7. Have my blood taken every day between 4am and 7am... just don't wake me
8. Not eating fresh fruits or vegetables
9. Learning to flush my central venous catheter (CVC)
10. Having a CVC

Two good reasons to have a BMT

1. Cured for life as long as everything goes well
2. Getting to order my meals every day that I'm in the hospital ... yep that's under the heading: inpatient, self-care activities.

The above is taken from the Blood and Marrow Transplantation Patient Education Manual.

But you know what??? I'm praying, and hope you will too, that God will heal me without the BMT. That HIS bone marrow would infiltrate my body!

Oh one more thing on the good news side: My CD4 cells are down to 794. This is good! Also, I've got a lot more energy and if I just wasn't itching (not as bad, but still an irritant) and if my fingers would quit splitting... why I'd be just peachy keen!

Keep praying and thank you all for standing with me, loving me, praying for me! ~ Renee