Friday, 6/5/09-What's Next?
Pete was on strike for any tests. He refused the bone marrow biopsy and an EKG the other day. He demanded to see the top doc, who is also his doctor that he sees at the clinic.
We had a number of people that were aware of his wishes and our concerns and questions. The doctor that is assigned to us in the hospital for the month of June, the social worker, the pastor, and the head of nursing. All attended the weekly Thursday conference where each patient is reviewed and spoke up for us.
After the meeting the doctor flew by with our other doctor and the pastor in attendance and a woman who never did identify herself. She wasn't on my good list as she came flying in ahead of the group and turned on the overhead lights blinding Pete and startling us both as we were trying to relax and remain calm before this meeting.
The visit was very brief and fast and the only thing we got out of the whole thing was that the plan is to keep giving Peter chemo and letting his counts recover and then do it again and again and again as many times as it takes to knock the Myeloma down. It was suggested that we should plan to stay here for the next few months with no real end in sight.
We didn't get to discuss options or ask questions and "poof" the doctor was gone. We might not have gotten the information that we wanted to a discussion that we wanted, but at least we know that this is not going to end anytime soon.
Peter is doing better "on paper" with numbers and is actually alert and said that he wants to fight. I told him that I would not deny him that, but that we would need to make some major life changes because we could not continue to survive any longer in the current arrangement.
Physical therapy started coming in and we discovered that he doesn't even have the strength to stand on his own after the past two weeks in bed and out of it. They are close to wanting to release him back to the hospitality house where we are staying, but will have to wait a week or 10 days or more for him to be more mobile.
I met with a social worker and with the head nurse today who both suggested to me that even though the doctor tells everyone they must stay here during the entire time, realistically people do go home and just get what they need at their home clinics while they are recovering counts before the next chemo round.
Today he has had the bone marrow biopsy and will have the PET Scan shortly. Next week we will know those results. I will also ask our doctor what the parameters are for what we're aiming for not only for bone marrow results but for counts before chemo.
Meanwhile I'm trying to brainstorm how to make enough of a living to pay the bills and how to make all this work. It is probably going to mean that he will need to stay an inpatient without a caregiver and I will have to live at home and work at anything I can find.
Will post more next week as we learn more.
We had a number of people that were aware of his wishes and our concerns and questions. The doctor that is assigned to us in the hospital for the month of June, the social worker, the pastor, and the head of nursing. All attended the weekly Thursday conference where each patient is reviewed and spoke up for us.
After the meeting the doctor flew by with our other doctor and the pastor in attendance and a woman who never did identify herself. She wasn't on my good list as she came flying in ahead of the group and turned on the overhead lights blinding Pete and startling us both as we were trying to relax and remain calm before this meeting.
The visit was very brief and fast and the only thing we got out of the whole thing was that the plan is to keep giving Peter chemo and letting his counts recover and then do it again and again and again as many times as it takes to knock the Myeloma down. It was suggested that we should plan to stay here for the next few months with no real end in sight.
We didn't get to discuss options or ask questions and "poof" the doctor was gone. We might not have gotten the information that we wanted to a discussion that we wanted, but at least we know that this is not going to end anytime soon.
Peter is doing better "on paper" with numbers and is actually alert and said that he wants to fight. I told him that I would not deny him that, but that we would need to make some major life changes because we could not continue to survive any longer in the current arrangement.
Physical therapy started coming in and we discovered that he doesn't even have the strength to stand on his own after the past two weeks in bed and out of it. They are close to wanting to release him back to the hospitality house where we are staying, but will have to wait a week or 10 days or more for him to be more mobile.
I met with a social worker and with the head nurse today who both suggested to me that even though the doctor tells everyone they must stay here during the entire time, realistically people do go home and just get what they need at their home clinics while they are recovering counts before the next chemo round.
Today he has had the bone marrow biopsy and will have the PET Scan shortly. Next week we will know those results. I will also ask our doctor what the parameters are for what we're aiming for not only for bone marrow results but for counts before chemo.
Meanwhile I'm trying to brainstorm how to make enough of a living to pay the bills and how to make all this work. It is probably going to mean that he will need to stay an inpatient without a caregiver and I will have to live at home and work at anything I can find.
Will post more next week as we learn more.
posted by BethPowell at 1:06 PM
<< Home