[Al's Wife]

Patti and Sally,

I've been reading the boards but just too tired to post. I'm so happy that Dean is tolerating the Dacogen and I can't believe he found a doctor who will go in and meet him on Sunday. We should be so lucky. I can't even get Al's local oncologist to call us back. I have been trying to get in touch with him since last Friday, when I hand carried a letter stating that he would need to get his labs done locally and sent to Moffitt. I have called his office, left word with his nurse, the receptionist, and an email, and it is now Monday afternoon and still NOTHING! We still have the option of going to Quest for the labs, but what if Al needs platelets. We have to have a local doctor to order those. If we don't hear anything tomorrow, I'm going to try and get in touch with the doctor at Emory that we were referred to earlier and see if he will take over Al's care locally. I just can't keep hanging like this, it's driving me crazy. Not to mention that Al is feeling awful. He lay around all weekend, taking several naps a day, and just not himself. I don't know if his body needs time to adjust to the new medicine, or if he's just depressed, or what, but he's certainly not been himself. He's also run a low-grade fever off and on. Sally, did Don have any problem feeling worse when he was on the Promacta?
Okay, enough about us.
How are y'all doing? Sally, I hope Don got a good report at NIH. I know you won't have the results back for a few weeks but I'll sure be praying for good news. Hope you have a safe trip there and back.
Patti, I'm sure you look better with your haircut - at least I bet you feel better. It's hard not to get so wrapped up as caregivers that we forget about ourselves but everything you read says that we have to take care of ourselves. If you get a chance to go to one of the Conferences put on by the Leukemia and Lymphoma Foundation you should try to go. They are very well done and give a lot of helpful information. We went to the one in Atlanta this year and while Al wasn't receptive to it, I learned a lot. The only way I got him to go is that his doctor from Emory was one of the speakers. But that is how we met Dr. Komrojki, his doctor at Moffitt, he was also one of the speakers and talked a lot about research and new treatments.
Just wanted to check in and tell y'all I really hope things are going well with all of you - Sally and Don and Patti and Dean - and with all our MDS friends. God bless you all. Lots and lots of HUGS!