There is still a fair amount of assimilation in progress, but I know people are waiting to hear how the Ottawa Hospital visit panned out.
The fellow we met with there is the head of the BMT team. Along with him were 2 ladies who are also part of the team, one for out patients and the other was I think the head nurse (so she had the best information). Dr Bredeson was pleasant enough, is sincere in wanting to “cure” me, and I have to face that there really is no question about how to proceed, as he stated 98% would do the transplant. I should have asked him what the other 2% would do. The bottom line is, if I don’t get this transplant now, then leukemia is more than possible. He said that they talk about my case twice a week, Mondays and Wednesdays. This was a surprise to us as things had been so quiet and I was beginning to wonder if I had been forgotten, like that first day in the chemo room at KGH. I am not sure where the communication break down was, but we feel better knowing that I am being taken care of even if I don’t know it. I made it clear to Dr B that he is dealing with a patient who is at opposing ends of the medical spectrum. He indicated his understanding by demonstrating with his hands on an invisible scale: This is where homeopathy is…..and this (on the extreme opposite) is where we need to be. To this I feel I must resign myself, but it doesn’t mean I can’t do other things to make this transition (I like that better than transplant!) as smooth as possible.
Dr B described in detail the transplant procedure from my end as preparation takes place. The donor is the one who decides if they are available (in case one is pregnant or has developed hepatitis, for example) and which type of donation they make: bone marrow directly or peripheral stem cells from the blood. The former is the better option and which is what they request from the hospital. As I do not have a matching sibling I must get an allogenic non-related match. There are 2 confirmed donors so far, both males, and each of the matches are 10/10 (the first numbers in my favour!). The fact that the donors are male is also fortuitous because female stem cells can have added complications with hormones. I asked about the ethnicity question and he was surprised that I had learned one of the donors was in Germany. Pete and I looked at each other and said= oops! Hope someone doesn’t get in trouble about letting that out. I mean, it’s a big country, and anonymity is secure. One reason Germany had a good match is because their donor program is top notch. It makes no difference about being German or not, because it is actually the WBC that determine the match, not the blood type, though being Caucasian helps. Asians and other ethnicities have a more difficult time finding donors, for example. When the cells are “harvested” they are fresh, not frozen, so the closer the better. The way it works is, while I am getting prepped with drugs to kill off what faulty immune system I have left, the donor is contacted and he goes to the local hospital to have the cells removed. If he does donate the marrow directly, he goes under anesthesia while they remove the cells from his hip bone, gets topped up with extra RBC and maybe platelets if necessary, then goes home with maybe some pain in the hip where the marrow was taken. The cells go into a cooler and an RCMP person who is waiting on standby takes the cooler and gets on the next plane to Ottawa to deliver them. The cells are then infused into me for about 20 minutes, so it is all very quick and time sensitive. As the new cells go in, the blood cell counts go down as my bad cells get bumped out and then the new cells settle in, a process called engraftment, and then the numbers go up again. How this happens, that is how the cells, once in the blood stream, know where to go, is a mystery even to the medical profession. It is one of those things that demonstrates the body’s intrinsic healing mechanism.
While this happens, I am to be watched 24/7 for any signs of rejection or infection, particularly GVHD or graft vs host disease which is a whole other ball of wax wherein my new immune system may be attacked as foreign and unwanted and present me with a plethora of nasty side effects that are to be further blasted with more drugs. I assume with an already poor IS this may not be as serious an issue, but other organs can be involved so there will be masses of antibiotics flowing through me to head off any potential infection. What this also means is I will be monitored constantly and in striking distance of the BMT team for about 3 months and the team will see me daily. (This adds further complications I don’t want to get into right now.) It takes about 6-8 weeks from the moment they get things going, so I am looking at February for the transplant. It would be ironic if it was on my birthday. The sooner I give the go-ahead, the sooner they can pick the date and activate everything. I wasn’t ready to decide on the spot. I made it clear what my feelings/beliefs were so they knew what they were up against. Overall we were impressed with the organization of the team and their genuine concern and care for me. What sucks, among other things, is that it could take as long as a full year to get back to a normal life and even after that I need regular follow ups in Ottawa, first weekly then monthly and then it should taper off.
I don’t see any other way to get through this. Where I am now is too far past the point of return for any nutritional or supplemental intervention. All I can do is eat well as much as I can, take basic supps., be positive, use energy healing and meditate. One thing I am grateful for is the timing– to be indoors in the middle of winter is not too much of a hardship for a sun worshipper like me. It will be like hibernating. As spring comes, I think of it as a rebirth.
We are trying to get on as normally as possible but then it hits me and I want to bust a wall in. I tried looking at the marrow support forums but they are more depressing than I was expecting so I will save that for when I feel stronger. As you can see, it has taken me three days to be able to even write about this. Things have been pretty overwhelming and I find myself at turns exhausted, spaced out, blank, engaged with my family, then disengaged, trying to get in the holiday spirit, and depressed. All of these things I know are normal. In order to be able to read about transplants and complications, I need to be a bit more removed. On the other hand, this is the kind of research that is a good distraction, and I’ve always loved learning new things. I can think of a million other things I would have preferred to learn, however…