Quote:
Originally Posted by Al's Wife
Billy, Tina, Patty and Dean,
That overwhelming tiredness seems to be the
biggest problem with AML. As I type this Al is still
in bed. I feel sure he'll need a tranafusion when
he goes for labs this week. Such a rollercoaster
ride. The fear of the "what if" is heavy on my
heart today so I'd better get up and get busy.
God please give us all strength.
Prayers for all,
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Linda, I just said a prayer for you and Al.
Dean seems to be more weak than tired, and has a great deal of difficulty breathing, even if he just walks across the room. They measured his oxygen levels at Moffitt, and they were fine. Dean saw his cardiologist two weeks ago, everything looked good, so we have no idea if this is the MDS or something else.
The doctor in Moffitt said the weakness and shortness of breath were because of Dean's low counts, but his oncologist locally says that isn't the cause. So who is right?
Dean had two transfusions last week, Wednesday and Friday, one unit of packed red blood cells each day, and six units of platelets. For a few hours afterwards Dean feels better, but it doesn't last for long.
Last night we went out to dinner with our neighbors. We dropped Dean at the entrance to the restaurant, he had to sit down before he could even walk to our table, and then had trouble breathing when we were seated. Of course, Dean hardly ate anything, just a bowl of soup, but at least he was trying.
Dean has an appointment with his oncologist tomorrow afternoon and labs, we are wondering what they will be. When does Al have labs again?
I can understand your fear of "what if". Right now Dean and I aren't really getting any answers, we are given options, but no one is telling us where Dean is at with this disease. Dean feels as though he is too weak to go through the tests for the trial study, and then have to wait until the middle of September before he can start the drug.
We want to ask his oncologist about starting Vidaza, even though his oncologist says it won't help. At least Dean feels like he has some hope if we do try. Doing nothing won't give us any hope, and the way Dean feels right now, he isn't sure he will be here in September for the trial.
Love, hugs, faith, hope and prayers Linda and Al.
Patti and Dean