Appreciation and awareness!
These are the two things that I came away with from the first day of the Bone Marrow Transplant Survivor's Conference. After listening to today's speakers and participating in a group session with 12 other transplant survivors, I got a new appreciation as to how fortunate I have been. The speakers dealt with the many physical and emotional problems that often accompany a bone marrow transplant while the survivors told stories of suffering that ran the gamut from excessive fatigue to breathing and gastro-intestinal issues that subjected people to many months in the hospital.
As to awareness, it was reinterated many times that graft vs host disease can crop up at any time down the road. Even after four or five years! I have to admit that that was an eye-opener but it doesn't change my current thoughts on things. I take it one day at a time - not worrying about tomorrow. To do so would only spoil the current day and there is nothing to be gained by doing that.
Another interesting tidbit is that fact that the same disease is treated in so many different ways by so many different doctors at so many different facilities. Other AML patients underwent procedures that I never heard of or that were never even mentioned as possibilities for me. I can't argue with their relative success because everyone there, obviously, is a bone marrow transplant survivor.
Now, I know that I am not the only one to come through this relatively unscathed. And that was confirmed by a few others who told their stories as well. But the emphasis is on the word "few". There aren't many of us.
The other nice thing to see was that, all in all, people had a positive attitude about things - even though they had suffered much. I don't know if I could be as upbeat as them. I'd like to think so. But, having no reason to get down on myself, I haven't had to directly face the issue.
This brings me to a conversation that was held at the restaurant last night where we went to dinner with my brother-in-law and sister-in-law. Those two and my wife did not know how they would respond should they have been given the diagnosis of having cancer. I can understand where they are coming from but, obviously, for me I know the answer and I know how I would conduct myself afterwards. I now realize how strong I can really be and, truthfully, it has surprised me.
Not that I ever wanted this disease - but, having done so, I am a very fortunate man, indeed...
Bob
March 18, 2010 11:30 PM
The "new normal"!
It consists of doing more and more of the things that I like to do and things that need to be done. Yesterday I hooked up the vanity and toilet in my bathroom downstairs, we went to a medicare seminar(need to enroll should I get laid off when I try to return to work), and I ordered a couple of video boards for our ancient computers(it's easier to upgrade them than to transfer all the data, pictures, software, music, etc. to a new machine, and, anyway, we both like Windows XP). Lastly, our friends invited us to an actual Passover Seder to be held at their house on the 29th. It's the first time that all of our ducks seemed to be in a row and that we can actually do it. We're looking forward to it! Life always gives us new things to experience and enjoy. I certainly enjoy them all the more at this point in my life than I ever would have before.
Today, I went to my docent class at the Currier Art museum, did a little more work on the bathroom, entertained company late in the afternoon, and went out to dinner tonight. All in all a busy two days.
I still haven't forgotten about the TV interview. I know that they are working on it and getting ready to air it. However, the trremendous wind storm of a few weeks ago and the horendous rain storm of this past weekend have pushed everything else aside as the destruction and recovery process deservedly gets first priority.
It seems hard to imagine all of that has happened when we look at the beautiful weather that we currently have. Another spring that I get to see! The season of rebirth. And, since it somewhat coincides with my bone marrow transplant anniversary it makes it all the more meaningful to me. This beautiful pre-spring weather makes you glad to be alive! And it's great that I have the opportunity to say that!
Take nothing for granted...
Bob
It consists of doing more and more of the things that I like to do and things that need to be done. Yesterday I hooked up the vanity and toilet in my bathroom downstairs, we went to a medicare seminar(need to enroll should I get laid off when I try to return to work), and I ordered a couple of video boards for our ancient computers(it's easier to upgrade them than to transfer all the data, pictures, software, music, etc. to a new machine, and, anyway, we both like Windows XP). Lastly, our friends invited us to an actual Passover Seder to be held at their house on the 29th. It's the first time that all of our ducks seemed to be in a row and that we can actually do it. We're looking forward to it! Life always gives us new things to experience and enjoy. I certainly enjoy them all the more at this point in my life than I ever would have before.
Today, I went to my docent class at the Currier Art museum, did a little more work on the bathroom, entertained company late in the afternoon, and went out to dinner tonight. All in all a busy two days.
I still haven't forgotten about the TV interview. I know that they are working on it and getting ready to air it. However, the trremendous wind storm of a few weeks ago and the horendous rain storm of this past weekend have pushed everything else aside as the destruction and recovery process deservedly gets first priority.
It seems hard to imagine all of that has happened when we look at the beautiful weather that we currently have. Another spring that I get to see! The season of rebirth. And, since it somewhat coincides with my bone marrow transplant anniversary it makes it all the more meaningful to me. This beautiful pre-spring weather makes you glad to be alive! And it's great that I have the opportunity to say that!
Take nothing for granted...
Bob
March 16, 2010 11:35 PM
Nothing exciting!
Yesterday, other than working on my bathroom(which was today's major activity as well), I took my grandson to the high school wrestling banquet because they recognized the incoming eigth graders for next year. He was pleased to be able to go as his parents were not available to take him.
No news on the medical front, but we are looking forward to going to the Bone Marrow Transplant Surviver Symposium this Saturday and Sunday. It should be interesting and I'll pass on anything of merit that crops up. One thing that I've learned through all of this is that I still have a lot to learn. Fighting leukemia and it's aftermath is the major activity of a small subculture that exists right under our noses and we don't even know it. Certainly this is true of many, many other diseases as well and we are just oblivious to it. It's good that we don't have to experience it but we should be aware that it exists and how it affects other people's lives.
There are many people fighting battles that we don't know about and there are many more people who do all that they can to help these people fight those battles. I don't want to call them all heroes but I do want to say that they do go above and beyond the call of duty.
As for me, I choose to forget all that stuff and just proceed apace to do the things that need to be done around the house and elsewhere. No reason to dwell on the past as it won't change it and no reason to worry about the future because I can't control it.
Enough pontificating for one day...
Bob
Yesterday, other than working on my bathroom(which was today's major activity as well), I took my grandson to the high school wrestling banquet because they recognized the incoming eigth graders for next year. He was pleased to be able to go as his parents were not available to take him.
No news on the medical front, but we are looking forward to going to the Bone Marrow Transplant Surviver Symposium this Saturday and Sunday. It should be interesting and I'll pass on anything of merit that crops up. One thing that I've learned through all of this is that I still have a lot to learn. Fighting leukemia and it's aftermath is the major activity of a small subculture that exists right under our noses and we don't even know it. Certainly this is true of many, many other diseases as well and we are just oblivious to it. It's good that we don't have to experience it but we should be aware that it exists and how it affects other people's lives.
There are many people fighting battles that we don't know about and there are many more people who do all that they can to help these people fight those battles. I don't want to call them all heroes but I do want to say that they do go above and beyond the call of duty.
As for me, I choose to forget all that stuff and just proceed apace to do the things that need to be done around the house and elsewhere. No reason to dwell on the past as it won't change it and no reason to worry about the future because I can't control it.
Enough pontificating for one day...
Bob
March 14, 2010 11:55 PM
What weather!
Winter won't go away without a fight. Lot's of cold, bone-chilling rain from last night and, supposedly, on into tomorrow evening. Then it does a complete 180 and the temperatures sore into the mid to upper 50's. As they say, in New England, if you don't like the weather - wait awhile.
So what has gone on over the past two days? I continued to get out as we went to the local mall to do some shopping, we visited friends last night and played bridge, we went to church this morning(what a pleasure to be able to make that claim), and then we stayed home to avoid going out in the horrible weather.
Life continues apace and I have a lot of things on my plate - working on the bathroom, studying for my docents course, updating my wife's artist web site(or trying to anyway - having problems find a new web authoring tool to allow me to do it), framing my grandson's wrestling chart from his state championship meet, framing another painting that my wife has done for an upcoming art show, putting together a poster for an event at church,... The list goes on.
Oh! And I have to order some new video boards because the latest web authoring tools won't run with our archaic graphic cards. This requires some research as well. Fun to do but time consuming. I don't know how I will be able to accomplish all of these things if I ever have to go back to work. So we'll just pray that the status quo remains exactly that for a while.
People continue to ask how I am feeling and I appreciate the interest and concern. In a nutshell, I am still feeling fine. Of course, it's only at the doctor's visits when my blood counts are taken that such feelings can be confirmed or denied. But, I'll take feeling fine during the interim.
We're also making plans to visit our friends in New York during April or May. Another huge step forward for me.
With all that's going on, I don't have much free or spare time anymore.
As my wife said, "You wanted your old life back - don't complain!"
She's right - and I love it...
Bob
I
Winter won't go away without a fight. Lot's of cold, bone-chilling rain from last night and, supposedly, on into tomorrow evening. Then it does a complete 180 and the temperatures sore into the mid to upper 50's. As they say, in New England, if you don't like the weather - wait awhile.
So what has gone on over the past two days? I continued to get out as we went to the local mall to do some shopping, we visited friends last night and played bridge, we went to church this morning(what a pleasure to be able to make that claim), and then we stayed home to avoid going out in the horrible weather.
Life continues apace and I have a lot of things on my plate - working on the bathroom, studying for my docents course, updating my wife's artist web site(or trying to anyway - having problems find a new web authoring tool to allow me to do it), framing my grandson's wrestling chart from his state championship meet, framing another painting that my wife has done for an upcoming art show, putting together a poster for an event at church,... The list goes on.
Oh! And I have to order some new video boards because the latest web authoring tools won't run with our archaic graphic cards. This requires some research as well. Fun to do but time consuming. I don't know how I will be able to accomplish all of these things if I ever have to go back to work. So we'll just pray that the status quo remains exactly that for a while.
People continue to ask how I am feeling and I appreciate the interest and concern. In a nutshell, I am still feeling fine. Of course, it's only at the doctor's visits when my blood counts are taken that such feelings can be confirmed or denied. But, I'll take feeling fine during the interim.
We're also making plans to visit our friends in New York during April or May. Another huge step forward for me.
With all that's going on, I don't have much free or spare time anymore.
As my wife said, "You wanted your old life back - don't complain!"
She's right - and I love it...
Bob
I
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