Kind of a bummer of a day!
Today was my wife's birthday(that's not the reason that it was a bummer) and she was out shopping all day with one of my daughters and then went to a friend's birthday party attended by a lot of people that we haven't seen for quite a while. She had a great time - and I'm glad that she did. But, unfortunately, I could not attend and that's the bummer part!
This is when the recovery period really gets you down - when you feel great but you can't do anything. If I were the usual patient, I'm sure that I would be tired and suffering from Lord knows what in the way of side effects - all of which would make me not desire to do things. But feeling as well as I do, it really hurts to miss events.
I know that you can try to rationalize your way through this but, as with most things, there is the universal tug of war between the brain and the heart. So far the brain is still holding firm but I can feel the heart gaining ground.
My biggest battle is with church and my singing in the choir. I really miss the service, the people, and my weekly opportunity to commune with God. There is no choir in the summer so that is currently a non-issue. But in a few weeks, that won't be true and the longing will begin in earnest once again. However, no matter what my feelings are, the doctor's desires will rule the day. This year it may be even more risky as they are warning us of the supposed widespread nature of the H1N1 flu virus. We'll see! As I said before, the doctor told me that with my being on immuno-suppressants the flu vaccination will have no affect on me. It'll just be a waste of time.
So, days like today can be somewhat depressing for me.
But, this too shall pass...
Bob
August 28, 2009 10:05 PM
We've come so far!
I was watching the movie "The Express" - the story of Ernie Davis, a great college football player who died of leukemia at the age of 23 in 1963 without ever playing a down of professional football.
Today the disease is not the death sentence that it once was. In the late 50's, bone marrow transplants only took place between identical twins! It was 1968 when the first sibling transplant took place and 1973 when the first unrelated donor transplant occurred. But it was in 1979 when the first SUCCESSFUL unrelated donor(allogeneic) transplant was accomplished.
This was done without the benefit of a bone marrow data base - a member of the hospital staff was deemed to be a good match. This, of course, prompted the need for a large bone narrow data base and the effort took off.
The National Bone Marrow Donor Registry was federally funded in 1986, in 1987 the first donor match was made. The data base now includes a network of donor registries in 30 countries. It contains more than 5.5 million donors and facilitates an average of 200 transplants each month. Boy, have we come a long way!
Of course, I went out on a web search for the above info. This also revealed a lot of other information that points to the seriosness of the whole procedure. One site had the following quote, "Depending on a number of factors, the treatment-related death rate from (bone marrow transplantation-BMT) ranges from 1% to 40%, making it the MOST DANGEROUS of all organ transplants. On the other hand, the potential benefits are enormous...In each individual patient considered for (BMT), the potential benefits of the transplant must outweigh its potential risks."
Not that I had too much choice in this matter - I had to go for it! But the way that everything has gone for me has totally belied the huge risk and all the side effects that you read about.
The more that I read, the more I can truly say that this has been a miracle...
Bob
I was watching the movie "The Express" - the story of Ernie Davis, a great college football player who died of leukemia at the age of 23 in 1963 without ever playing a down of professional football.
Today the disease is not the death sentence that it once was. In the late 50's, bone marrow transplants only took place between identical twins! It was 1968 when the first sibling transplant took place and 1973 when the first unrelated donor transplant occurred. But it was in 1979 when the first SUCCESSFUL unrelated donor(allogeneic) transplant was accomplished.
This was done without the benefit of a bone marrow data base - a member of the hospital staff was deemed to be a good match. This, of course, prompted the need for a large bone narrow data base and the effort took off.
The National Bone Marrow Donor Registry was federally funded in 1986, in 1987 the first donor match was made. The data base now includes a network of donor registries in 30 countries. It contains more than 5.5 million donors and facilitates an average of 200 transplants each month. Boy, have we come a long way!
Of course, I went out on a web search for the above info. This also revealed a lot of other information that points to the seriosness of the whole procedure. One site had the following quote, "Depending on a number of factors, the treatment-related death rate from (bone marrow transplantation-BMT) ranges from 1% to 40%, making it the MOST DANGEROUS of all organ transplants. On the other hand, the potential benefits are enormous...In each individual patient considered for (BMT), the potential benefits of the transplant must outweigh its potential risks."
Not that I had too much choice in this matter - I had to go for it! But the way that everything has gone for me has totally belied the huge risk and all the side effects that you read about.
The more that I read, the more I can truly say that this has been a miracle...
Bob
August 27, 2009 10:55 PM
A continuation of yesterday!
Everything's A-OK as they say. It feels funny eliminating a pill from my morning and evening cocktails - now down to 5 in the morning, 1 at 2:00, and 2 at bedtime. A far cry from the 30 something pills they were giving me when I was in the hospital last February.
My wife's birthday is Saturday, so we are having a little family get together on Sunday to celebrate the momentous occasion. I know at our age that we don't like to be reminded of such things but it's as much an opportunity for her mother to be able to participate in celebrating one more time - she is almost 92!
The get together has pre-empted my opportunity to begin painting the kitchen - my wife does not want it looking a mess with everyone coming on Sunday. I guess that I'll begin on Monday! I suppose that I could use a little time off but I really am itching to get going for two reasons. One - it gives me something to do and two - it looks so nice when the job is done.
Still no liquor, however, and we didn't press the doctor on the issue as I still have at least two more months of immuno-suppressants in front of me.
So...
tomorrow will be another day of rest...
Bob
Everything's A-OK as they say. It feels funny eliminating a pill from my morning and evening cocktails - now down to 5 in the morning, 1 at 2:00, and 2 at bedtime. A far cry from the 30 something pills they were giving me when I was in the hospital last February.
My wife's birthday is Saturday, so we are having a little family get together on Sunday to celebrate the momentous occasion. I know at our age that we don't like to be reminded of such things but it's as much an opportunity for her mother to be able to participate in celebrating one more time - she is almost 92!
The get together has pre-empted my opportunity to begin painting the kitchen - my wife does not want it looking a mess with everyone coming on Sunday. I guess that I'll begin on Monday! I suppose that I could use a little time off but I really am itching to get going for two reasons. One - it gives me something to do and two - it looks so nice when the job is done.
Still no liquor, however, and we didn't press the doctor on the issue as I still have at least two more months of immuno-suppressants in front of me.
So...
tomorrow will be another day of rest...
Bob
August 26, 2009 10:15 PM
"Remarkably normal!"
Those were the doctor's words this morning when he first looked at my counts. If he knew more about me, he wouldn't be so prone to calling me "normal". The bulk of the short meeting with the doctor was spent on idle chit-chat. However, my monthly immuno-suppressant weaning continued(as I thought it might) when the doctor told me to stop taking the pro-graf. So I am now down to 1 immuno-suppressant which should be halved in October and then discontined in November. The beat goes on!!! Unfortunately, the drug that I am still taking is the one that contributes to raising your cholesterol level so I have to remain on Lipitor for the next 2 months anyway. With my low dosage of Lipitor, it's currently 174 - so I am doing OK.
The doctor always does a check of my mouth looking for evidence of graft vs host disease(finding none) and asks me a few questions regarding possible other symptoms of the disease. When I always answer no to each question, he is quick to say that I have to be ever vigilant about looking for such things. So far, so good - nothing has ever surfaced. But, of course, he always states that we are not out of the woods yet - and, in truth, he is right.
Frequently, when we visit the clinic, I run into a fellow who had his transplant 12 days before me - and today was no exception. When I asked how he was doing, he responded that he was frequently tired, has had some eye problems, and his legs were weak and he had to go for frequent walks. I must admit that I have not gone for a lot of walks, but I have been doing all kinds of projects around the house that are probably much more strenuous than any walking might be. I am not tired, have suffered no eye issues, and my legs don't bother me. Needless to say, I have been extremely fortunate to be further along in my recovery than he appears to be.
As I mentioned the other day, with my new found desire to eat, I thought that I might have gained a few pounds - and I was right. Three to be exact! But, more importantly, my blood pressure still remains low - 132 over 66! So good health seems to be at hand.
A lot of good stuff today - I am so grateful to you all for keeping me in your thoughts and prayers. This run has been both "amazing" and "remarkable" to use the doctor's words.
I'll gladly take it...
Bob
Those were the doctor's words this morning when he first looked at my counts. If he knew more about me, he wouldn't be so prone to calling me "normal". The bulk of the short meeting with the doctor was spent on idle chit-chat. However, my monthly immuno-suppressant weaning continued(as I thought it might) when the doctor told me to stop taking the pro-graf. So I am now down to 1 immuno-suppressant which should be halved in October and then discontined in November. The beat goes on!!! Unfortunately, the drug that I am still taking is the one that contributes to raising your cholesterol level so I have to remain on Lipitor for the next 2 months anyway. With my low dosage of Lipitor, it's currently 174 - so I am doing OK.
The doctor always does a check of my mouth looking for evidence of graft vs host disease(finding none) and asks me a few questions regarding possible other symptoms of the disease. When I always answer no to each question, he is quick to say that I have to be ever vigilant about looking for such things. So far, so good - nothing has ever surfaced. But, of course, he always states that we are not out of the woods yet - and, in truth, he is right.
Frequently, when we visit the clinic, I run into a fellow who had his transplant 12 days before me - and today was no exception. When I asked how he was doing, he responded that he was frequently tired, has had some eye problems, and his legs were weak and he had to go for frequent walks. I must admit that I have not gone for a lot of walks, but I have been doing all kinds of projects around the house that are probably much more strenuous than any walking might be. I am not tired, have suffered no eye issues, and my legs don't bother me. Needless to say, I have been extremely fortunate to be further along in my recovery than he appears to be.
As I mentioned the other day, with my new found desire to eat, I thought that I might have gained a few pounds - and I was right. Three to be exact! But, more importantly, my blood pressure still remains low - 132 over 66! So good health seems to be at hand.
A lot of good stuff today - I am so grateful to you all for keeping me in your thoughts and prayers. This run has been both "amazing" and "remarkable" to use the doctor's words.
I'll gladly take it...
Bob
August 25, 2009 11:10 PM
As the song goes "Up in the morning..."
Yep, it's time for the 5 AM roll call tomorrow morning for our visit to the doctor for the month of August. (It's hard to believe that August is coming to an end and with it, the summer). I do expect it to go well but I always have a little fear and trepidation about being "stuck" for my blood test. Usually it goes well, but I have been known to have a few "experiences" if you will. Even though tomorrow is the day, it's only once a month. I don't know how we did it once a week for over three months but you gotta do what you gotta do, I guess.
Anyway, that's the big news because nothing else is really going on - which is the way that it's supposed to be.
I did do a caulking task today. Boy, do I hate caulking! The stuff can get all over the place and its really not water soluble so that it sticks like glue to your hands and you can't wash it off! The best way to get it off, I've found, is to let it cure on your skin and then rub it off. What a pain. But, anyway, the task is done and I can forget about it for quite a while.
So, tomorrow will be a newsworthy day for all...
Bob
Yep, it's time for the 5 AM roll call tomorrow morning for our visit to the doctor for the month of August. (It's hard to believe that August is coming to an end and with it, the summer). I do expect it to go well but I always have a little fear and trepidation about being "stuck" for my blood test. Usually it goes well, but I have been known to have a few "experiences" if you will. Even though tomorrow is the day, it's only once a month. I don't know how we did it once a week for over three months but you gotta do what you gotta do, I guess.
Anyway, that's the big news because nothing else is really going on - which is the way that it's supposed to be.
I did do a caulking task today. Boy, do I hate caulking! The stuff can get all over the place and its really not water soluble so that it sticks like glue to your hands and you can't wash it off! The best way to get it off, I've found, is to let it cure on your skin and then rub it off. What a pain. But, anyway, the task is done and I can forget about it for quite a while.
So, tomorrow will be a newsworthy day for all...
Bob
August 24, 2009 11:10 PM
1 more day!
Yup! One more day and then it's back to the doctor's office. At least that will give me some news with a little bite to it that I can pass on to you. Because today was another uneventful day. Other than a couple of small projects, it was just another day on the road to full recovery.
I keep hearing that these blog entries still purport to inspire people and I am most assuredly grateful that they do. But, for the life of me, sometimes I just can't see how that goal is achieved.
I just keep plodding ahead and I pass on to you the, what I feel, are the dull and boring activities of my day. I certainly remain upbeat about it all because I am really doing so well but it's not the kind of material that makes for the great American novel.
I am sure that as I continue to write, my impatience shows through. I really feel great and yet I am not supposed to do much - it's such a dichotomy. Yesterday, for example, I walked up 2 flights of stairs to get to my niece's apartment without any problems. A year ago, that would not have been the case. When we went on our cruise just before I went into the hospital I was having a dickens of a time just trying to walk up one flight! So there I was doing whatever I wanted to do while being ill and now being unable to to do whatever I want when I feel so much better.
I guess that I am really in need of prayers for patience...
Bob
Yup! One more day and then it's back to the doctor's office. At least that will give me some news with a little bite to it that I can pass on to you. Because today was another uneventful day. Other than a couple of small projects, it was just another day on the road to full recovery.
I keep hearing that these blog entries still purport to inspire people and I am most assuredly grateful that they do. But, for the life of me, sometimes I just can't see how that goal is achieved.
I just keep plodding ahead and I pass on to you the, what I feel, are the dull and boring activities of my day. I certainly remain upbeat about it all because I am really doing so well but it's not the kind of material that makes for the great American novel.
I am sure that as I continue to write, my impatience shows through. I really feel great and yet I am not supposed to do much - it's such a dichotomy. Yesterday, for example, I walked up 2 flights of stairs to get to my niece's apartment without any problems. A year ago, that would not have been the case. When we went on our cruise just before I went into the hospital I was having a dickens of a time just trying to walk up one flight! So there I was doing whatever I wanted to do while being ill and now being unable to to do whatever I want when I feel so much better.
I guess that I am really in need of prayers for patience...
Bob
August 23, 2009 9:20 PM
A little earlier post tonight - gotta catch a 10:00 TV show!
The only event of the day was that we went to our niece's apartment in Boston for a house warming party. She is studying to become a chef after graduating from Georgetown this past May. If today's meal is any indication of where she can go in the future - her future is very bright! The food was excellent! And this after only a couple of months at the school.
Other than that, no projects, etc. Sunday is supposed to be a day of rest!!!
I'm feeling fine - as usual - and I'm kind of looking forward to visiting the doctor on Wednesday to see how things are going. I don't expect any surprises - but it's nice to get confirmation of that.
That's basically today in a nutshell.
Another uneventful day...
Bob
The only event of the day was that we went to our niece's apartment in Boston for a house warming party. She is studying to become a chef after graduating from Georgetown this past May. If today's meal is any indication of where she can go in the future - her future is very bright! The food was excellent! And this after only a couple of months at the school.
Other than that, no projects, etc. Sunday is supposed to be a day of rest!!!
I'm feeling fine - as usual - and I'm kind of looking forward to visiting the doctor on Wednesday to see how things are going. I don't expect any surprises - but it's nice to get confirmation of that.
That's basically today in a nutshell.
Another uneventful day...
Bob
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