Monday, 6/1/09
I am scheduled to get my growth shot at 5:00 today and go for collection at 10:00 tomorrow morning. They said I will be overall achy like having the flu. I can do this only twice...about 6 days apart. The cells will stay alive in him for only a couple of days.
The new doc for the month of June is a lady that we only saw once or twice when we were here before, but I like her. Peter declared that he does not want the bone marrow biopsy and doesn't want anymore tests. He said it's not going to do any good. I asked him if he wants me to just take him home and he said yes, but after the doctor talked to him a little bit he said he just wants to be left alone and sleep and get stronger.
She did an excellent job of pointing out how much he really has improved since he was admitted and how much better off he is compared to last year when he was a patient for four months. I don't think he really cared because he still feels so wiped out that he can't keep his eyes open and it's not due to any drugs.
I talked to the doctor privately in another office and believe that she understands a lot of our confusion and misinformation and desire to know what really might happen. I tried to explain to Peter that the only way to know for certain is with the bone marrow biopsy, but he said not right now. The doctor did say that when his involvement went from 0 to 20% to 95% that it was aggressive and was going to come back that much no matter what was done. She said that in private with me so he didn't hear it. She admitted that it is very tough to fight when it is that aggressive. It's not impossible, but is tough.
I told her that Peter has been going through all this since his relapse in Dec. '07 because he remembers how great he felt through all of 2007 after his 2006 transplant. He feels we lost our shot at long term remission because they didn't do it right in Richmond. No saved cells and no maintenance therapy.
I told her that a P.A. in the doctor's office had told us that there are all sorts of studies, protocols, and fantastic treatments available. I explained that while medicine may be able to prolong his life for months or years with all of these advancements, if it means more time in the hospital, at the clinic, constantly being tested, taking pills, and not feeling like he did in 2007, then that is not the quality of life he wants.
Part of why he is putting himself through a lot of this and trying to just hang on is because of some unresolved legal issues that just never end. Part of it to is that the only income we really have right now is his disability and he thinks that if he gives up I'll lose out. Silly reasons, I know.
I also had contact with a nice young man that is the social worker on this floor now. We talked about all the different issues going on at home and our prolonged stay here last year and the problems we are facing today. He said that he sits in on the Thursday meetings where they go over each patient and will make sure to ask some questions and make it known with our new doctor that we want to know what kind of choices there are.
Between the two of them I feel confident that maybe they can get this point across and even if he does not have the bone marrow biopsy they can tell us that "if you have the test and the results are not good, here are your choices" or "if we see the results we think we will based on your reduced free light chains, then these are your choices".
So, for now we'll just continue to see his improvement in labs and see what information comes from the meeting and take a day at a time right now. I'm o.k. with that.
The new doc for the month of June is a lady that we only saw once or twice when we were here before, but I like her. Peter declared that he does not want the bone marrow biopsy and doesn't want anymore tests. He said it's not going to do any good. I asked him if he wants me to just take him home and he said yes, but after the doctor talked to him a little bit he said he just wants to be left alone and sleep and get stronger.
She did an excellent job of pointing out how much he really has improved since he was admitted and how much better off he is compared to last year when he was a patient for four months. I don't think he really cared because he still feels so wiped out that he can't keep his eyes open and it's not due to any drugs.
I talked to the doctor privately in another office and believe that she understands a lot of our confusion and misinformation and desire to know what really might happen. I tried to explain to Peter that the only way to know for certain is with the bone marrow biopsy, but he said not right now. The doctor did say that when his involvement went from 0 to 20% to 95% that it was aggressive and was going to come back that much no matter what was done. She said that in private with me so he didn't hear it. She admitted that it is very tough to fight when it is that aggressive. It's not impossible, but is tough.
I told her that Peter has been going through all this since his relapse in Dec. '07 because he remembers how great he felt through all of 2007 after his 2006 transplant. He feels we lost our shot at long term remission because they didn't do it right in Richmond. No saved cells and no maintenance therapy.
I told her that a P.A. in the doctor's office had told us that there are all sorts of studies, protocols, and fantastic treatments available. I explained that while medicine may be able to prolong his life for months or years with all of these advancements, if it means more time in the hospital, at the clinic, constantly being tested, taking pills, and not feeling like he did in 2007, then that is not the quality of life he wants.
Part of why he is putting himself through a lot of this and trying to just hang on is because of some unresolved legal issues that just never end. Part of it to is that the only income we really have right now is his disability and he thinks that if he gives up I'll lose out. Silly reasons, I know.
I also had contact with a nice young man that is the social worker on this floor now. We talked about all the different issues going on at home and our prolonged stay here last year and the problems we are facing today. He said that he sits in on the Thursday meetings where they go over each patient and will make sure to ask some questions and make it known with our new doctor that we want to know what kind of choices there are.
Between the two of them I feel confident that maybe they can get this point across and even if he does not have the bone marrow biopsy they can tell us that "if you have the test and the results are not good, here are your choices" or "if we see the results we think we will based on your reduced free light chains, then these are your choices".
So, for now we'll just continue to see his improvement in labs and see what information comes from the meeting and take a day at a time right now. I'm o.k. with that.
posted by BethPowell at 2:48 PM
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