[milliken2]

Hi Everyone;

Well - Earl went for his blood draw this AM - and his Hgb was down to 7.9, They had trouble withdrawing blood from his mediport, so they had to do a peripheral stick - but did finally get it. Tomorrow we have to be there at 9:00 AM to get Activase in the mediport, wait for 30 minutes to see if it works - and if it doesn't work then - you wait another 90 minutes. This all has to happen before he gets the 2 units of blood, the desferal, and the platelets.

Then we went for the appointment with the hema/onc. Prior to the appointment, I had talked to my friend at the lab, and they said Earl's Hgb was down to 7.9. Mind you - last Friday and this past Tuesday he got 2 units of blood and one large bag of platelets each time. So - this will make 6 units of blood in an 8 day stretch. Earl and I talked, and he hasn't had one good week since he started on the Dacogen. He was due to begin round six next week, Since I already knew what his numbers were before the Doc came in - I was prepared. Earl said "You tell him" - and I did. I said that we thought that the Dacogen was not working, and that we did not want to continue. He looked at the past labs, and said "I agree." much to my surprise. Then he suggested we try Vidaza - I left that decision up to Earl, and he agreed to start the Vidaza next Monday - 5 days on then 3 weeks off - and then repeat the cycle. I asked the Dr. about giving it to him sub-Q, and he said "No, No - not in his case." I then said that I thought the absorption might be better since it is not going directly into the vein and quickly kiling off what good blood he has. He again said no, but ordered him a Neupogen injection (the first one he has had). So - we went back to the infusion lab for the injection, and while we were waiting - the hema/onc came in - in front of all the patients and nurses "I am going to change your Vidaza to Sub-Q injection, as I feel it has better absorption and stays in the body longer." He then turned on his heel and walked out. HMMMM - didn't I just say that to him in the exam room when no one else was present?

Then, this AM before we left - the cardiologist's office called here and wanted to schedule an appointment. Said we were going to see Dr. Sim Yuk So(?sp) - the Physician's Assistant. To which I promptly replied - No - we are not. I want the appointment with Dr. Paul Wayczynski and only Dr. Paul. The receptionist said "Oh - you know Dr. Paul" And I said yes. I did not tell her that not only do I know him professionally from being in the hospital - when I was working Hospice years ago, I took care of his Mother. Paul and I are on a first name basis, and he will be honest with me - I still don't think Earl has a heart murmur, and I will NOT see the PA we saw yesterday again for sure.

It seems like we have been living at the Dr's offices, and the hospital. This house is showing my lack of attention, but when I get home with him, I am worn out too.

Hoping that everyone improves - and know my MDS 'family' is always in my thoughts and prayers.

((((HUGS))))

Beth