Happily Surviving at the Beach

To my dear loyal friends:

Sorry it's been so long since I've last written but I've been at the beach and at HUP. I survived round #2 of Vidaza with not too many side effects other than extreme fatigue and mild nausea. I made it down to the shore for the 4th of July with everybody: the boys and Laurie, Jessie, Walid and the kids. We had great weather and fun with the children.

After the 4th, I stayed down the shore for ten days with Jessie and the kids and then Joe took me home for a week to receive round #3 of Vidaza. I had the last infusion on Friday morning and Joe and I headed straight to the shore. The dizziness is worse, I'm not exactly sure why, and it makes it difficult to get back and forth to the beach. When it was just Jessie, the kids and I, the poor thing would have to drag the kids, a huge cart full of toys, chairs, and boogie boards, and then me. The most challenging part was that walk from the stairs down to the uneven sand.

We had a surprise visit from Uncle Joe one weeknight when he was working over in Egg Harbor. He's the only one that can take the kids on the rides so he, Jessie, the kids and I ventured over to the boardwalk. The evening crowd and noise was quite overwhelming but watching the kids' faces on the rides (Emma the thrill seeker, Christian the cautious sticking to only the train) was totally worth it.

I'm headed home tomorrow to catch up on my rest (I need two naps a day) and then I will be back for another week at the beach with Jessie and the kids.

We've had some very long days at HUP - matching me for blood and platelets has become more challenging due to the presence of antibodies. They estimate I've now had over 200 transfusions each of blood and platelets. When I needed platelets after Round #2, it took eight hours to receive them do the difficulty matching them. There is talk of having to progress to a more complicated HLA-type matching for the blood and platelet transfusions, which would take an estimated 48 hours to complete. This past Thursday Heather was able to schedule two units of blood, one unit of platelets, one unit of fluids, plus the chemo and we were in and out of HUP in about five hours. This was pretty remarkable considering all they were able to accomplish. Thank you to my dear friends for transporting me to and from HUP and for your patience and presence with me during these HUP visits.

We got word that Dr. Porter will be leaving on sabbatical on August 1 and will be gone for six months. I'm quite upset about this, as he knows me so well and has allowed me to call the shots (within reasonable limits) for so long. Heather will continue to see me and work with the doctor I will be reassigned to.

Thank you so much for continuing to support me and my family - for the cards I receive every day, for our friends at the beach who help me back and forth and all the things that all of you do for me each day. It means so much. Happy Summer!

Love,

Debbie