[Al's Wife]

Beth,

Thank you so much for all the great information, especially about the in network hospital for transfusions. That makes sense. I'm thinking our local oncologist is upset with us for going to Moffitt and that is why he isn't returning my calls. He's always been supportive before when we went out of state for treatment, but this time he recommended a trial somewhere other than Tampa, and it would have required 72 hours IV in the hospital each month and staying close to the hospital out of state for several more days. We opted to try a different trial and chose Moffitt. So that might be why he's being a jerk. But if I don't hear something today, I'm definitely going to find another local oncologist. This is getting way past ridiculous!
I am sorry to hear about what you and Earl are going through. Believe me, I know how hard it is to be strong and try to keep on a happy face for them, and always in the back of your mind (even though we try not to think this way) what IF this doesn't work.
I hope the Dacogen kicks in soon and Earl's numbers begin rising. When Al was first diagnosed, they had him on Vidaza right off the bat, and he didn't improve. It was so frustrating each week to get those disappointing numbers. Every time they draw labs, I'm bugging them for a copy the minute it's finished (and of course it takes awhile to get the results so I have to learn to be more patient) and my stomach is in a knot until I see the numbers.
And Earl's BMB reminded me of Al's first one, which is the reason he now says, "I won't have another BMB without sedation." He has a VERY high tolerance for pain, so I knew it was bad when he said that. And with one exception, he has had sedation with all the rest and it has been so much better. Except for the one at M. D. Anderson where they used a different kind of sedation and when it wasn't working (they were in a hurry because it was quitting time - if you know what I mean) they zapped him with more. He was wide awake when they wheeled him out, passed out by the time we got in the car, slept through me getting him into the motel (not sure how I did that), got him into bed, and he didn't remember anything until the next day. That was not a good experience either.
Well, now I'm rambling. We're all in this together, so hang in there. I know it's hard on you. But just take it one day at a time and remember you are only one person. We probably didn't appreciate our husbands as much as we should have before they got sick. I know Al still tries to bring in the groceries, take the garbage out, etc. But when he's not looking, I run around trying to do it, so he won't have to. I don't think I have him fooled.
But I am fortunate that he does tell me every day how much he loves me and appreciates me. Having MDS has brought us closer. I mean, how could it not when we spend so much time sitting together in the doctors' offices and hospitals! lol
You've got to find humor where you can; right?
Hope all of us have a good day. Lots of prayers and HUGS going out to all.
Since writing the above, Al is up and called our local oncologist's office himself. They said they were in the process of setting him up for labs, just hadn't got around to it. Oh, well, at least he accomplished something I couldn't - an appointment tomorrow at noon! So we'll be getting the labs he needs for the clinical trial faxed to Tampa and if he needs platelets, hopefully, local oncologist will set them up for in network hospital.
Linda