Thursday, February 25, 2010

Thurs - 2-25-10. Life has been rather boring but that is fine and that is the reason I haven't written for a couple of weeks. Roy's blood work has been good enough so that he only has to have blood drawn 3xs a week for the last couple of weeks. His hemoglobin was low enough last week that he had a unit of blood but that is all he has had to have for a long time. He count was not as low as what they usually transfuse at but since he had that episode of shortness of breath about a month ago, they set his level higher to transfuse because they didn't want this happening again.

Also, the last couple of weeks I have been sending him by himself instead of me going with him and sitting for 3 hours while he gets a bag of fluid. I know, this probably isn't right but I was just getting worn down - after all I am older than he is. This morning he has an appointment with a pain doctor about his neck. He has had neck problems for about 18 months now - it is a herinated (sp) disc (is it 'c' or 'k'? - don't remember) and when he was in Topeka before we came down here, he had had a couple of injections of steriods (we think it was ) and that seemed to help but that is wearing off. They gave him a prescription for Darvon but that doesn't seem to help too much so the SCT doctor is sending him to a pain doctor. I told Roy this morning to be very frank and honest with them and whatever they want to do or give him, let them. He has kept saying up until this point that he just wanted to fight the leukemia and deal with his neck later but the doctor and everyone says they can do both at one time and it will make him feel better and be more enjoyable to be around.

Otherwise, nothing is new. A gal in an rv parked next to us is from Mineral Springs, Tx and is a quilter so we have hit a couple of quilt shops. Her husband is getting proton shots for prostate cancer and they will only be here through next week but it has been fun talking with her and going shopping.

The sun is shining this morning and the trees are starting to bud out. The weather man says it is about 10-15 degrees below normal here but it does seem nice. We ran out of propane in one tank during the night so went outside about 4a.m. and switched tanks so when Roy gets home today I will send him down to get the empty one filled. See that is our excitment. One day I did defrost the refrigerator and freezer part and cleaned the oven so I do do a little housework.

Roy is now at day 52 post transplant - that means 48 more to go so he is over halfway through. The doctor said last week that he is doing fantastic but he had a long way to go and I realize that but we are thankful for each day with no signs of rejection. His WBC and platlet count are both in the normal range - it is just his hemoglobin that is a bit low but it hasn't dropped really low.

Thursday, February 11, 2010

Thursday, Feb. 11. Life has been going along fairly uneventful and that is good for us. We saw the doctor yesterday and he is real pleased with the way is going; the only thing is they would like him to drink more water but he has a hard time doing that. They had decreased him to two hours of fluids but today they upped it to 3 hours. They have also changed that he only needs blood work Monday, Wednesday and Friday; so that cuts down part of what needs to be done each day. The doctor gave us a report on his bone marrow test "The post-transplant microsatellite polymorphism pattern is identical to the donor pattern MRN 816533 (Tommy and his medical number - this was not in the report but for you all) which is compatible with successful engraftment. No chimerism is observed." From what I understand chimerism to be, this means Roy's blood type has not changed yet to Tommy's blood type, but this will be happening soon. It also says "No morphological or immunophenotypical evidence of acute leukemia." So as far as they can say, he has no more leukemia. He is taking a lot of pills, but not as many as I thought he might have to take, so hopefully that will keep him from getting the graft v. host disease. I know one of the pills he takes they said he will be taking for six months but that is the only one they have given a time on. We just get what they prescribe and take them as they say. The nurse said that hopefully within the next week or two, as long as Roy is doing good, they might be able to give us a day off from coming in every day. But so far Roy has to go in every day. I don't go in with him on Saturday and Sunday and I think I might not go in some of the other days either.

Wednesday, February 3, 2010

Wed. Feb. 3. It has been a while since I have written but it has been rather quiet and uneventful here in Houston. As a quilting friend of mine told me (her husband also has AML and had a transplant about 8 years ago) those of us that are dealing with AML like boring. That means things are going along good.

Roy had a bone marrow yesterday and today when the doctor saw him he told Roy that his blast was 1% which is really, really good. In fact Roy is doing so good that the doctor said he won't have to have another bone marrow until day 90. Today is day 30 and they usually do them on day 30, 60 and 90 but we get to skip day 60. Roy has had some diaherra off and on but so far it is just caused by magnesium and not a graft/host problem as it can be controlled by Imodium - not the over the counter kind but a prescription kind. They have also taken him off one of his virus antibiotics as it was making his liver function go high. So they are giving him a different kind by IV for a few days. They are also going to be checking his blood to see if he has any signs of the donor blood type yet. They said it should start showing up.

We go every day for blood work and IV therapy. It is a bag of fluid with magnesium in it and then today he also had the antibiotic. Since Roy is on Medicare, Medicare won't let him bring a pump home as those not on Medicare can, so we go in every day. We can't figure out why Medicare won't let him bring home a pump instead of paying for a hospital call every day.

The doctor and nurse are real happy with Roy's progress. They said his body has been through a lot but is doing great. It still amazes me that KU Med Center in Kansas City couldn't, or wouldn't, fix up a regime for him to have a transplant but that they would here, without any qualms in doing it.

So hopefully, the next several weeks will be boring.