Looks like I have recovered from the infections and Pneumonia with the help of my home nurse (Lynn). This nurse thing got a little testy at times but we got through. It looks like she qualifies for caregiver status when I am done with the transplant, and I may have to start a new blog for that one.
On to the latest and greatest results and schedule...
We met with the infectious disease doctor Monday and got a good report, cultures were taken to confirm that the infections were gone and we have not heard otherwise. That meeting basically concluded the treatment from my oncologist and his team. I will reconvene with them after the transplant treatment in a few months.
On to Karmanos Cancer Center in Detroit where we had a full day of consults and tests on Thursday with the transplant team. First in line was the pharmacist who outlined all of the drugs, side effects, and more drugs to treat the side effects. Once I complete this whole transplant thing, watch for me on season 5 of celebrity rehab. Actually, he did a very nice job of showing us the time lines for drugs and why they administer the whats and when. This will not be the same chemo I got initially, and will be a tougher set of drugs to get ready for the transplant. I am scheduled to check in on Wed 12/8 and will get a day of pre-treatment and start the chemo on the 9th.
Once the chemo is completed, its a 6 day cycle, I will go straight to the transplant stage. The transplant itself takes only 20-30 minutes. This totally surprised us. I'm not sure what we thought would take place, but we didn't think it would be that quick. The transplant is essentially administered like a blood transfusion and then we wait for the good cells to grow...
From the pharmacist, we proceeded to the inpatient clinic where I had to get another bone marrow biopsy. Since I hadn't had one in about 3-4 weeks, it was time to assess where I am now in the process of recovery and if the Cancer cells have taken over. This was #10 and it provided the most entertainment of them all. As the nurse is preparing to do the biopsy I let her know that I have very hard bones, and she told me she has never had a problem (she did say she hoped she didn't jinx herself). After 15 minutes of having a needle in my hip and a lot of trying and trying, she had to call in the closer to get it done. Consequently, the doctor who finished the biopsy gave up on her attempt and started over. I'm not sure if this can be considered #11, but he did get it done, again with a lot of effort. I knew this one was going to make me pretty stiff for a couple days (and it has).
The last meeting of the day was with the transplant doctor (Dr. Uberti) to cover his latest thoughts and how he felt about the timeline. We had met with him a month a so ago for an introduction to the process, and it was probably the toughest meeting/discussion we've had to date. While we discussed the transplant process, we came away feeling like all we discussed were the risks and problems that could occur. Since that time, all of us have done a lot of reading and in doing so, you start to feel like they are trying to cover every possible scenario, and most of them are the things that could go wrong. In fact, not once does the literature reference transplant success. But, this meeting was far less formal and relaxed. Dr. Uberti and the coordinating nurse went through our latest records, hospital visits and the the timeline as established last week. His main concern right now is that I may have too much Leukemia in my body to go straight to transplant next week because I haven't had any chemo in the last few months and that I had the lung infection with the pneumonia. They want your health (relatively speaking of course) to be as clean as possible. The biopsy results will guide them in making this decision and those are due Monday or Tues.
IF I don't go straight to the transplant, it appears I will still be admitted for chemo (referred to as consolidation) which will bring the cancer back to a manageable level so that they can then let me recover a little bit and then, of course, give me the heavy dose of chemo for the transplant. (I'm sure another biopsy will be in order...)
In hoping the results are good and we head to the transplant on the 15th, we do know that the donor is a "perfect" match. There are a couple different ways of defining the criteria for a perfect match, but it was explained that in my case, the donor is 10 for 10 in the criteria they want to see. We asked what "perfect" means and they explained that 10 for 10 is equivalent to having a match from a sibling (remember, my brother Charlie was not a match). I think this eased (if they can be eased) our concerns a little bit.
You may be wondering where my head is in all of this... I guess I'm just ready for it to get moving again. We know all of the risks, but there really is no choice. I know all of the chemo side effects, and while they aren't any fun, I got through it once, so why not again (plus, I look pretty damn good bald, if I do say so my damn self). The part that scares us all with the transplant is the Graph Versus Host Disease (GVHD) which you are almost guaranteed to get. The odd thing about GVHD is that the doctors want some in you because it helps fight the bad cells, but too much can start to affect your organs, which is not so good. They think most of the complications from GVHD and other complications can be controlled with drugs, but then there are side effects from those... what a cycle.
More on GVHD here.... (if interested, it starts on page 5 of the recovery link below)
http://www.marrow.org/PATIENT/Survivorship_Ed/assets/pdfs/Survivorship_Treating_Complications.pdf
Overall though, they wouldn't be doing this if it didn't work, right?
In any event, I have a CT scan on Monday morning to have the lungs viewed and in conjunction with the biopsy results, I'll be able to post an update on Tues or Wed. If you have any questions, etc... feel free to email me or some of the family.
Thanks for all of the support and even supporting Lynn as she made it to bowling last month with a phenomenal average of 98 or something.
