My second entry for the day - as promised!
A quiet day though I did install the new modem that Comcast sent(free!) that was supposed to dramatically increase my internet speed. The only problem is that my computer is so old and so under configured that even though the input may get there faster, the computer is so slow that you never notice the difference. So much for progress.
Another beautiful day. Enough so that, when friends stopped by for a moment this afternoon, they noticed those wonderful irises, that I commented on the other day, shining in the bright sun. I stayed home all day, though my wife was out at 3 events. She still has a life to live outside the home even though I cannot be much of a part of it. Tomorrow, we will visit my brother-in-law's and sister-in-law's place on lake Winnipesaukee. It's supposed to be a pleasant day weatherwise and we are looking forward to it.
Healthwise, life continues apace. I cannot and will not complain about a thing.
I've been working on that sermon that our priest has allowed me to do and it's just about done. As I said before, I know that there is a long way to go but the bulk of the major health milestones have come and gone. There is certainly time to tweek it because I can't see myself doing it until January at the earliest. But there is another reason for getting it done now and that is that the thoughts as to what I wanted to say would continue to plague me until I had entered them into the computer. Once that was done, my brain kind of relaxed because it didn't have to continually remember the points that I wanted to make.
God works in strange ways. I have never been one who enjoyed standing up and speaking in front of a group and yet, here I will be doing this not for the first, but the second time. Our priest offered the pulpit a few years ago to anyone who wanted it and I was the only one to take advantage of his offer. Each time, I have felt compelled to do it. I was glad that I did it the first time and I know that I will be thankful that I had a second opportunity as well.
That's about it for today. I'll fill you in on all the lake visit details tomorrow.
Bob
June 6, 2009 1:35 AM
Please accept my apologies for being this late - especially those of you who like to read this blog before going to bed! But my wife and I went to the drive-in movies tonight. It was the first time that I had been to the movies in 4 months and it was the perfect way to go because you stay in your own car the entire time. But, boy, it's getting expensive - 20 bucks! I admit that you see two movies but that is still a chunk of change!
I won't cheat here and let this be my entry for Saturday as well. I'll still post at, hopefully, the usual time.
I am feeling fine even though I am up at this hour of the night. Of course, I can sleep in tomorrow(as I do most days) because I am still not supposed to be doing anything. To some extent, it almost makes you feel worthless because you see things that need to be done and you can't do anything about it. Come July, I think that I'll start getting into painting some of our rooms. It's a job that you can stop whenever you want and pick up on another day. I would like to move fast here but I am sure that I won't have the stamina that I think that I have!
But, that's for another day. Right now, I think that it is time to go to bed, don't you!
Bob
I won't cheat here and let this be my entry for Saturday as well. I'll still post at, hopefully, the usual time.
I am feeling fine even though I am up at this hour of the night. Of course, I can sleep in tomorrow(as I do most days) because I am still not supposed to be doing anything. To some extent, it almost makes you feel worthless because you see things that need to be done and you can't do anything about it. Come July, I think that I'll start getting into painting some of our rooms. It's a job that you can stop whenever you want and pick up on another day. I would like to move fast here but I am sure that I won't have the stamina that I think that I have!
But, that's for another day. Right now, I think that it is time to go to bed, don't you!
Bob
June 4, 2009 11:00 PM
What do I write about today?
The only thing that comes to mind are the beautiful flowers that are in full bloom around our patio area. Neither my wife nor I can remember their being so gorgeous the past two years. The irises are absolutely stunning. Maybe it's because I have a new appreciation for the world around me. Maybe it's because I have more time to look at them. I don't know. But it is just so exhilarating to be able to sit out there and smell those flowers. But as much as I do enjoy their beauty, I dislike gardening tremendously! Fortunately, my wife does not.
I know that in the past, the hustle and bustle of life would just leave little or no time to sit outside and enjoy them. The flowers would come and go and their beauty would fall on blind eyes. Maybe this just serves as another way for God to convey to each of us that He has created a such a magnificent world for which we should stop every once in a while to appreciate what we truly have and not take everything for granted.
I certainly appreciate the fact that I continue to feel fine. Why I have been chosen for this type of journey I do not know. Someday the reason will be revealed.
Let's all stop every once in a while and smell the roses...
Bob
The only thing that comes to mind are the beautiful flowers that are in full bloom around our patio area. Neither my wife nor I can remember their being so gorgeous the past two years. The irises are absolutely stunning. Maybe it's because I have a new appreciation for the world around me. Maybe it's because I have more time to look at them. I don't know. But it is just so exhilarating to be able to sit out there and smell those flowers. But as much as I do enjoy their beauty, I dislike gardening tremendously! Fortunately, my wife does not.
I know that in the past, the hustle and bustle of life would just leave little or no time to sit outside and enjoy them. The flowers would come and go and their beauty would fall on blind eyes. Maybe this just serves as another way for God to convey to each of us that He has created a such a magnificent world for which we should stop every once in a while to appreciate what we truly have and not take everything for granted.
I certainly appreciate the fact that I continue to feel fine. Why I have been chosen for this type of journey I do not know. Someday the reason will be revealed.
Let's all stop every once in a while and smell the roses...
Bob
June 3, 2009 10:50 PM
And the days keep marching on...
Uneventful as usual. But especially nice since we did not have to get up real early and make our way to the hospital. It really felt good for the two of us.
We had company tonight and they brought the pizza. Just think, a week ago that would not have been possible. It's really a nice blessing to be able to spend some time like this and see that things are moving forward. To talk with other people is so refreshing. I know that it doesn't mean much to most of you because you do it every day. But there are many days that the only person that I see and talk to is my wife. I often wonder how people go through this who do not have anyone living with them? It must be really tough!
It's going to be a long ramp up period before I get all the way back - was I ever all the way there? But there is a light at the end of the tunnel and I know that it's not an oncoming train.
So much for today, I think that I'll call it a quick one tonight...
Bob
Uneventful as usual. But especially nice since we did not have to get up real early and make our way to the hospital. It really felt good for the two of us.
We had company tonight and they brought the pizza. Just think, a week ago that would not have been possible. It's really a nice blessing to be able to spend some time like this and see that things are moving forward. To talk with other people is so refreshing. I know that it doesn't mean much to most of you because you do it every day. But there are many days that the only person that I see and talk to is my wife. I often wonder how people go through this who do not have anyone living with them? It must be really tough!
It's going to be a long ramp up period before I get all the way back - was I ever all the way there? But there is a light at the end of the tunnel and I know that it's not an oncoming train.
So much for today, I think that I'll call it a quick one tonight...
Bob
June 2, 2009 11:10 PM
Another uneventful day medicalwise.
I did take my grandson to his baseball game and just before the game I went to a pizza/sub place and got a BLT sub. This was totally impossible a week ago with the fresh lettuce and tomato being off limits. It was a real taste treat.
It was also nice, once again, to be able to sit outside on a beautiful evening and watch the game. There is some sense of "normalcy" returning to my life.
Tomorrow is the first Wednesday that we don't have to go to Boston in over 3 months. That's a joy in and of itself. Obviously, no updated medical report from the clinic will be forthcoming tomorrow night - I'll give you my usual patient report.
Being able to do some things helps to break up the monotony and sets the stage for bigger and better things to come. It also makes me more appreciative of the things in life that we so often take for granted. It's difficult for those of you who have never lost those kinds of privileges and I can fully understand that - I was the same way myself. As they say, health first. With good health you can cope with almost anything. I really don't mean to philosophize here but I do want to share with you what's going through my little mind at this point.
That's about it for today as we make way toward enjoying our day off tomorrow...
Bob
I did take my grandson to his baseball game and just before the game I went to a pizza/sub place and got a BLT sub. This was totally impossible a week ago with the fresh lettuce and tomato being off limits. It was a real taste treat.
It was also nice, once again, to be able to sit outside on a beautiful evening and watch the game. There is some sense of "normalcy" returning to my life.
Tomorrow is the first Wednesday that we don't have to go to Boston in over 3 months. That's a joy in and of itself. Obviously, no updated medical report from the clinic will be forthcoming tomorrow night - I'll give you my usual patient report.
Being able to do some things helps to break up the monotony and sets the stage for bigger and better things to come. It also makes me more appreciative of the things in life that we so often take for granted. It's difficult for those of you who have never lost those kinds of privileges and I can fully understand that - I was the same way myself. As they say, health first. With good health you can cope with almost anything. I really don't mean to philosophize here but I do want to share with you what's going through my little mind at this point.
That's about it for today as we make way toward enjoying our day off tomorrow...
Bob
June 1, 2009 10:25 PM
Not much to talk about today. But, I did receive some information the National Marrow Donor Program. It was the first of 6 issues of a periodical entitled "Living Now - A guide to life after transplant". It's intent is to address various aspects of life after transplant, from 3 months after transplant, to two years, and beyond. It does set the stage for the entire recovery process by stating up front that "Recovery generally takes longer than treatment. If you have been looking forward to 'getting back to normal' soon after transplant, you may be disappointed." I can certainly attest to that. I'm not necessarily disappointed, but it is frustrating that your life is so restricted.
It goes through all the possible side effects of graft vs host disease(GVHD), dietary concerns, how to keep yourself in good health, how to handle your medications, and the mental iisues that go with having contracted such a serious disease as leukemia.
Having been so upbeat from the beginning, it is hard for me to relate to the comments that are made about being down on yourself and expressing feelings of hopelessness and dispair. The same goes for all the side effects that GVHD can generate. According to the periodical, there are 2 types - acute which occurs during the first 100 days and chronic which can occur any time thereafter. Obviously, the time for acute has come and gone and, so far, there have been no signs of the chronic. It's supposedly a 50/50 shot whether or not you suffer any GVHD side effects.
But that's only part of the battle. They start listing all of the side effects from your medications - both physical and mental. Here again, I have seemed to escape these as well.
About the only thing that applies is the advice for protecting your health - the no crowds, the eating suggestions, and keeping out of the sun.
It's a big boost to see that other people seem to have to deal with many issues that I have avoided. I don't wish any harm to anyone, but knowing that I have come through this so well up to this point is a real blessing.
About the only comment that struck a chord with me was that those patients who experience some sort of GVHD have a lower risk of cancer returning than those who do not develop GVHD. No numbers are given, so I have no idea what that means. I think that the doctors expect something to occur during this weaning period. But given the fact that I was taking a lower dose of my drugs for almost 2/3rds of the 100 day period - I would find that unlikely to happen.
In any case, as I said before, my faith has prepared me for any eventuality and I'll deal with whatever happens when it happens.
Let's all remain upbeat...
Bob
It goes through all the possible side effects of graft vs host disease(GVHD), dietary concerns, how to keep yourself in good health, how to handle your medications, and the mental iisues that go with having contracted such a serious disease as leukemia.
Having been so upbeat from the beginning, it is hard for me to relate to the comments that are made about being down on yourself and expressing feelings of hopelessness and dispair. The same goes for all the side effects that GVHD can generate. According to the periodical, there are 2 types - acute which occurs during the first 100 days and chronic which can occur any time thereafter. Obviously, the time for acute has come and gone and, so far, there have been no signs of the chronic. It's supposedly a 50/50 shot whether or not you suffer any GVHD side effects.
But that's only part of the battle. They start listing all of the side effects from your medications - both physical and mental. Here again, I have seemed to escape these as well.
About the only thing that applies is the advice for protecting your health - the no crowds, the eating suggestions, and keeping out of the sun.
It's a big boost to see that other people seem to have to deal with many issues that I have avoided. I don't wish any harm to anyone, but knowing that I have come through this so well up to this point is a real blessing.
About the only comment that struck a chord with me was that those patients who experience some sort of GVHD have a lower risk of cancer returning than those who do not develop GVHD. No numbers are given, so I have no idea what that means. I think that the doctors expect something to occur during this weaning period. But given the fact that I was taking a lower dose of my drugs for almost 2/3rds of the 100 day period - I would find that unlikely to happen.
In any case, as I said before, my faith has prepared me for any eventuality and I'll deal with whatever happens when it happens.
Let's all remain upbeat...
Bob
May 31, 2009 11:00 PM
It was really great to get out to the graduation party today. Another step in the right direction. It was outside, putting us at the whims of the weather, and we saw it all - bright sunshine, overcast skies, and heavy rain. Fortunately, they had a tent which sheltered us from all but the worst of it. At which point, we obviously went inside.
I warned everyone at the beginning that I was out of practice at such events and that I might be rude, crude, and say things that are socially unacceptable. My wife said that I never knew how to act properly to begin with and the others all said that they would never know the difference! It was nice to know that I was, once again, among people who loved me :)
It helped greatly that I was, at last, able to eat food prepared outside of the house. Now such events can be put on the schedule as long as the number of people are limited and not on a regular basis. We are still going to take it easy - there's a long way to go here.
All in all, a good day. Though I guess I have to admit that at this point in time every day is a good day as they are no longer really mine anymore - they really do belong to God. As I said before, it's days like today, when events occur, that I do think about the fact that I might have missed them.
Again, I thank you all for your prayers and I thank God for answering them...
Bob
I warned everyone at the beginning that I was out of practice at such events and that I might be rude, crude, and say things that are socially unacceptable. My wife said that I never knew how to act properly to begin with and the others all said that they would never know the difference! It was nice to know that I was, once again, among people who loved me :)
It helped greatly that I was, at last, able to eat food prepared outside of the house. Now such events can be put on the schedule as long as the number of people are limited and not on a regular basis. We are still going to take it easy - there's a long way to go here.
All in all, a good day. Though I guess I have to admit that at this point in time every day is a good day as they are no longer really mine anymore - they really do belong to God. As I said before, it's days like today, when events occur, that I do think about the fact that I might have missed them.
Again, I thank you all for your prayers and I thank God for answering them...
Bob
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