[Al's Wife]

Maria,

It's been a very hectic week. After not hearing from my local oncologist office, I kept checking, of course, to see if they were getting everything in order to begin the Dacogen. I asked our doctor's nurse (who I had several run-ins with earlier) if Al should get platelets before beginning the Dacogen since his platelets were less than 4,000. She said, Dr. S said that Dacogen was not going to help Al's platelets anyway.
I wanted to tell her that wasn't my question. Instead I just repeated the question. She again repeated what Dr. S had said. I told her we wanted to begin the treatment ASAP anyway and she said she would tell Dr. S. His office was just going to administer the drug because they are closer to home, more convenient, etc. but Emory is where we have switched.
I lay in bed and prayed about it that night. I contacted Dr. S's office and asked them if we could switch to a different office because I just could not deal with Dr. S's nurse and her rude, insensitive behavior. So everything was switched to a city about the same distance from our house. It is the same group but they only have one doctor at this office. I called, got an appointment for the next day, and we've been rolling ever since. Al's numbers are still awful. The new doctor said virtually what the others had said, he just said it in a much gentler and compassionate way, and his nurse is an angel.
He said if Vidaza doesn't work, Dacogen won't work. I said but it has in some patients. He said, yes, it has, but not usually. He said he had a patient a year and a half ago who did, but that the chance of it helping Al is 3 to 4%. I said, if we do nothing, the chance is 0%. He said, you are right.
So we left the office with some things to think about. This is totally in Al's hands - no, let me rephrase - this is totally in God's hands. But I'm leaving the decision to Al whether he wants to go forward with it or not. He had to have two units of blood today (his last transfusion was 8 days ago) and one unit of platelets, in hopes that it will help when he begins the Dacogen on Monday.
He has been so sick and weak that I really wasn't sure he would make it through the night a couple of times. The cough is horrible and it tears me up every time I hear him. The doctor gave him Z-pack but it hasn't helped. The warm water, tea, honey and other suggestions have helped but nothing really stops it.
Today has been his best day and strongest day all week, probably because we spent all day (and it is his birthday - 75th birthday) getting blood and platelets. The last word from him was "I'm going to try the Dacogen and if it makes me feel worse, then I'm going to stop and that's it."
He has been so tired and so sick and I can't believe he has gone downhill this fast.
Our priest came by yesterday. I have told Al goodbye (but I confess, I didn't mean it - how do you tell someone you love and have been married to 40 years goodbye) but I did tell him I'm not holding him here if he is ready to go. He asked me who is holding him here and I said, I don't know, it's in God's hands. Al has always been a controlling type person and I told him he couldn't control God. He said, I know I've tried all my life and it didn't work.
Ya gotta love this man. So you can see we've had some tears (okay - maybe a LOT of tears) and laughter.
I'm still hoping for the miracle and will as long as there is a breath in his body. If the Dacogen gives him a longer quality of life, it will be a wonderful blessing. If not, then it is out of our hands.
Sorry I'm a Chatty Cathy but if I'm not talking or typing, I'm crying, so I just ramble on and on and on.
Praying for a miracle.
Love you all,