There are so many things that I want to say, that I HAVE wanted to say, but I don’t know where to begin… Let me start with the most recent things and try to work my way back. I went to see the Hematologist today and I guess it went well. That is to say, I got my point across that I want to be 100% involved in what is going on with my “treatment” and that I don’t appreciate decisions being made for me or assumptions made on my behalf. That’s about the best thing that came from today’s appointment. Apparently I am now dealing with two or more doctors, which I suppose is good in that I have a “team” working on my case, but I need to know that they are communicating well with each other AND with me. The ME part is key, at least from my perspective.
The other thing that I got from today’s appointment is this; I can certainly try Thalidomide but the fact is that it won’t really change anything, only prolong the inevitable and in the process there is a very real possibility that irreparable damage can be done to a good many vital organs that can neither be reversed nor prevented as the disease will continue along it’s path. The ONLY possible (that word causes some trepidation) cure for Myelofibrosis is a Bone Marrow Transplant, period. If I choose to try the meds and put the transplant off until later and the organs begin to fail, then the x-plant will not be an option. If I choose to forego the x-plant altogether, the disease will eventually run it’s course and I don’t think I need to tell you where THAT leaves me.
So, why not just man up and go with the x-plant? I’ll tell you why… There is a very real chance that the procedure itself can kill me. There is also a very real chance that I could go through all this and it just plain won’t work. Also, there will be drugs involved that are so toxic that if they are spilled in the hospital a HAZMAT team is called in to clean up the spill. They want to put this crap inside my body to “prep” it for the new marrow… Not a pleasant thought in my mind and I would be lying if I said I was not scared. I am scared as HELL! I want no part of any of this, I just want it to go away, but it won’t. At least not on it’s own. I could really use some advice here, your opinions, what you think, what would you do. This is some pretty important stuff here and obviously NOT a decision to be taken lightly.
This is all contingent on them even FINDING a suitable donor. They even discussed using the kids… I just don’t know if I could even ask them to go through this. Haven’t they gone through enough already? Many of you have asked me what you can do to see if you are a match. All I can tell you is to go here: http://www.marrow.org/JOIN/index.html and follow the steps to see if you are a match. Be advised that this will put you in a National Registry and you may very well be called to give to someone else, whether or not you are a match for me. You can donate multiple times; YOUR marrow will grow back, unlike SOME people… You can always decline later if you like and the process to see if you are a match is, I believe, a simple swab of the inside of your cheek. The donation process is quite another thing. I imagine it would be something very similar to my bone marrow biopsies where they “tap” into your pelvic bone and draw out what they need. I can assure you that you WILL be sore for several days afterwards… Because of this, and my nature in general, I cannot ask you to donate. I will just leave it up to you each as individuals to make the decision yourselves. If you don’t, I will still love you anyway… nothing can ever change that.
I have to meet with the VA psychologists on Friday and also a caseworker to make sure I have the proper mind set for this and also a good support system. IF I decide to go through with this Sarah and I would basically be moving to Seattle for several months (up to six I think) and we have the kids, the dogs… Then there is the thought of what happens if things go horribly bad and I simply don’t come back? Sorry… I didn’t intend to let this go “there” but I guess it’s sort of unavoidable at this point. Time to face reality. Time to decide where I want to be buried, IF I want to be buried or cremated, what kind of beer will be served at the wake… I have tried all throughout to remain as positive as possible but this is simply wearing down my resolve, my will to keep on fighting. I honestly don’t know how much more I can take… what reserves I have left in me. I have not done a whole lot of anything except think of the “what-ifs” for the past month and I don’t like any of them to be quite honest. And I have finally gotten mad about the whole thing, as in why me? What did I do to deserve this? How can the Osama Bin Laden’s and the Jeffery Dahmer’s and the Charles Manson’s just keep on living and I have to get cancer. And not just your run of the mill cancer but THIS! Please understand that I certainly don’t mean to make light of cancer at all, in any way. I’d like to think that I have been a relatively good person throughout my life. Sure I have made mistakes but I think I have already paid for them. I CERTAINLY didn’t cause thousands of deaths or start a war or eat anybody… SO WHY?!?!? I guess I am just supposed to accept that some things just are, that there is no explanation… I don’t like it but then again, I don’t like taxes and yet… ya still gotta pay…
Well, there were other things that I wanted to talk about but I guess I had a lot to get off my chest about that one thing. There are some pretty fun things that we did this month too but maybe I’ll save that for another update.
Until next month, may your Jack-O-Lanterns shine bright, your candy basket’s be full, and your car avoid any eggs this Halloween.
All my love, Tracy
You asked for advice, and that is so hard to give. Of course, no one can put themselves in your shoes unless they've faced something similar.
ReplyDeleteMy only advice is that I would not want you to do anything that might close off your chance for being able to get the transplant. I know it is a very iffy thing, but the fact that there is a chance for a cure through it is very heartening. I am not speaking from experience though, so my two cents are not worth even two cents.
You have some very tough decisions ahead, and I know that you already know you are loved and supported by prayer through it all.