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
Tuesday, October 27, 2009
Thursday, October 1, 2009
Culture shock!
Well, we have been here in California for about two months now and it hit me full force today that we ain't in Kansas (or Michigan) anymore Toto...
See, we went to the funeral of my wife's Uncle Ron today. Now, funerals I expect are much the same across the country with the exception being the religion practiced by the individual and/or their family. But it is what happened AFTER the service that left me in awe and made me realize that I am definitely NOT from around here. What follows is my account of the events directly after the service at the Funeral Home...
After the conclusion of the service folks sorta milled about until Uncle Ron was placed into the hearse and then they started making their way to their respective means of conveyance. The parking lot was laid out in such a way that the vehicles were parked into rows to facilitate a smoother exiting of the parking lot and into the funeral procession. Or at least that was clearly evident to me... such was NOT however the case! Some people started jockeying their way around other parked vehicles toward the exits in a most disorderly fashion and the hearse had not even moved yet but it was what followed that sorta had me ill at ease... as the hearse left the parking lot there was no rhyme nor reason to which vehicle left after or followed this way or that... it was CHAOTIC to say the least! You'd have thought the hare was racing around the track rail and all of us were hounds trying to catch it. Then as we finally made our way into the procession there was noone to direct traffic and the other motorists simply went about their business as if we in the procession were just leaving a softball game or some such. There was simply no consideration made whatsoever for the deceased or the family and friends of said person!
Now I know that I come from a rather small town in the Midwest and that we do things a little differently there but COME ON! Seriously?!? Where I come from, when a funeral procession passes by (you'll know them because all the vehicles have their lights on and there are little magnetic flags fluttering on the hoods of the cars and trucks) people take a second to pay their respects, even if they don't know who the person is/was. Traffic on the other side of a divided highway comes to a stop, construction workers will pause and take of their hats holding them over their hearts and bowing their heads, the procession stops for nothing short of a police car or fire truck... in short, all who are witness to such an event act in a far different manner than I witnessed today. Is life in this "Golden State" so incredibly hectic and fast paced that a person can't take a minute or two to at the very least be respectful to the newly departed? Perhaps say a prayer on his/her behalf? WOW... This is really very sad to me, that so little attention is paid to those that are now gone from us. What is next? Are we to be sent to a recycling facility and that's that? Where's Aunt Josie? Oh, she passed away last week and we mulched the garden with her...
Now most of you know that I am still trying to find my spiritual path. I don't consider myself a religious person but I DO consider myself a spiritual person. And as most of you are very aware, I am battling a life threatening disease and death is a very real possibility as I know that it is for all of us. Any one of us could try to cross the street and be hit by a bus at any given moment, but for me, it is so much more than real, it is literally IN MY FACE with every waking minute. As you may imagine, I have thought a lot about death... where I want to be buried after I am gone, what I want the service to be like, it is after all MY party right? But if this is how it is to be... well, I may just want to go home and have my coffin placed on a hay wagon and have it pulled by a team of draft horses through downtown on my way to the cemetery. Maybe even have it put in the back of my old pick-up truck and have my friends take me out to the woods for a good old fashioned bonfire... At least I'll get a little respect along the way.
Until then (yeah, I plan on it being quite a long while...) lets all slow down just a little and help a stranger along on the final leg of his journey, can we?
Rest in peace Uncle Ron, I hope the pace is just a bit slower up there...
See, we went to the funeral of my wife's Uncle Ron today. Now, funerals I expect are much the same across the country with the exception being the religion practiced by the individual and/or their family. But it is what happened AFTER the service that left me in awe and made me realize that I am definitely NOT from around here. What follows is my account of the events directly after the service at the Funeral Home...
After the conclusion of the service folks sorta milled about until Uncle Ron was placed into the hearse and then they started making their way to their respective means of conveyance. The parking lot was laid out in such a way that the vehicles were parked into rows to facilitate a smoother exiting of the parking lot and into the funeral procession. Or at least that was clearly evident to me... such was NOT however the case! Some people started jockeying their way around other parked vehicles toward the exits in a most disorderly fashion and the hearse had not even moved yet but it was what followed that sorta had me ill at ease... as the hearse left the parking lot there was no rhyme nor reason to which vehicle left after or followed this way or that... it was CHAOTIC to say the least! You'd have thought the hare was racing around the track rail and all of us were hounds trying to catch it. Then as we finally made our way into the procession there was noone to direct traffic and the other motorists simply went about their business as if we in the procession were just leaving a softball game or some such. There was simply no consideration made whatsoever for the deceased or the family and friends of said person!
Now I know that I come from a rather small town in the Midwest and that we do things a little differently there but COME ON! Seriously?!? Where I come from, when a funeral procession passes by (you'll know them because all the vehicles have their lights on and there are little magnetic flags fluttering on the hoods of the cars and trucks) people take a second to pay their respects, even if they don't know who the person is/was. Traffic on the other side of a divided highway comes to a stop, construction workers will pause and take of their hats holding them over their hearts and bowing their heads, the procession stops for nothing short of a police car or fire truck... in short, all who are witness to such an event act in a far different manner than I witnessed today. Is life in this "Golden State" so incredibly hectic and fast paced that a person can't take a minute or two to at the very least be respectful to the newly departed? Perhaps say a prayer on his/her behalf? WOW... This is really very sad to me, that so little attention is paid to those that are now gone from us. What is next? Are we to be sent to a recycling facility and that's that? Where's Aunt Josie? Oh, she passed away last week and we mulched the garden with her...
Now most of you know that I am still trying to find my spiritual path. I don't consider myself a religious person but I DO consider myself a spiritual person. And as most of you are very aware, I am battling a life threatening disease and death is a very real possibility as I know that it is for all of us. Any one of us could try to cross the street and be hit by a bus at any given moment, but for me, it is so much more than real, it is literally IN MY FACE with every waking minute. As you may imagine, I have thought a lot about death... where I want to be buried after I am gone, what I want the service to be like, it is after all MY party right? But if this is how it is to be... well, I may just want to go home and have my coffin placed on a hay wagon and have it pulled by a team of draft horses through downtown on my way to the cemetery. Maybe even have it put in the back of my old pick-up truck and have my friends take me out to the woods for a good old fashioned bonfire... At least I'll get a little respect along the way.
Until then (yeah, I plan on it being quite a long while...) lets all slow down just a little and help a stranger along on the final leg of his journey, can we?
Rest in peace Uncle Ron, I hope the pace is just a bit slower up there...
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