Wow! Two thirds of the way there. The days seem to move by fairly quickliy.
It was a very warm and sunny spring day today which gave me the opportunity to sit outside. However, the sun is far from my friend! The immuno-suppressants make me highly vulnerable to sunburn and one thing that they do not want to get is sunburned. It leaves the door open to infection and could quite possibly wreak havoc with my body. The solution is lots of sunblock. Historically, I do not use sunblock and I don't get sunburned but I guess that that's all going to change this year.
So, even though the weather is absolutely gorgeous, I still have to watch my step. In the winter, it's too cold. In the summer it's too sunny. I can't win for losing!! It seems that warm, cloudy days are the best for me!
So far, I have avoided sunburn but we have a long way to go here.
Otherwise, there was nothing out of the ordinary for the day. I feel fine.
Tomorrow we are expecting company which will make for a nice day.
Until tomorrow night...
Bob
April 24, 2009 10:10 PM 34 days to go
A beautiful day weatherwise and a beautiful day healthwise as well.
Other than having some company early this afternoon, it was the usual quiet day here. It's always nice to have company as it helps break up the day and it allows you to touch base with what's going on in other's lives. My life, of course, is an open book or should I say open blog!
Not much to dwell on here. We did go for a walk around sunset with the weather starting to cool off rapidly as the sun fell from view. But, it still doesn't take away from the fact that spring is becoming more and more evident everyday and that my day count continues it's inevitable march to zero.
So, I think that that will conclude the entry for today...
Bob
Other than having some company early this afternoon, it was the usual quiet day here. It's always nice to have company as it helps break up the day and it allows you to touch base with what's going on in other's lives. My life, of course, is an open book or should I say open blog!
Not much to dwell on here. We did go for a walk around sunset with the weather starting to cool off rapidly as the sun fell from view. But, it still doesn't take away from the fact that spring is becoming more and more evident everyday and that my day count continues it's inevitable march to zero.
So, I think that that will conclude the entry for today...
Bob
April 23, 2009 9:35 PM 35 days to go
Oops! I forgot to mention two things yesterday that I said that I would in earlier entries...
The first concerned how my weight was doing. Well, this week I was exactly the same as last week even though we had Greek Easter during that stretch. So, I guess that I didn't eat too much.
The second is about the nurse that my wife gave the pedometer to(never end a sentence with a preposition)! She used it on Tuesday and logged 8,000 paces. She forgot it on Wednesday. If we were to assume that a normal pace was about 2 feet, that would translate into 16,000 feet or over 3 miles! That's a lot of walking in a day!
I got to thinking today - bad idea! "They" say that God does not give us more than we can handle. In truth, I do not believe that God inflicts any harm on any one. God is the main force of good against evil in a world that harbors both good and evil. Having said that, I think that God has been astute enough to recognize the fact that I really am not able to handle much and has tried to rectify the situation by making my illness go as well as it possibly could! How else to explain what has transpired over the past, almost 6 months! Nowhere along the way has there been a step backwards or even a step sideways! That is hard to fathom with a situation like mine. It has truly been a miracle ride that only God can provide.
Now for the obligatory, "I'm feeling fine"! And, I'm looking forward to a beautiful spring day tomorrow and an even better weekend as they forecast temperatures in 70's for tomorrow and in the 80's for Saturday and Sunday. I'll try to spend as much time outside as I possibly can.
So much for today's entry...
Bob
The first concerned how my weight was doing. Well, this week I was exactly the same as last week even though we had Greek Easter during that stretch. So, I guess that I didn't eat too much.
The second is about the nurse that my wife gave the pedometer to(never end a sentence with a preposition)! She used it on Tuesday and logged 8,000 paces. She forgot it on Wednesday. If we were to assume that a normal pace was about 2 feet, that would translate into 16,000 feet or over 3 miles! That's a lot of walking in a day!
I got to thinking today - bad idea! "They" say that God does not give us more than we can handle. In truth, I do not believe that God inflicts any harm on any one. God is the main force of good against evil in a world that harbors both good and evil. Having said that, I think that God has been astute enough to recognize the fact that I really am not able to handle much and has tried to rectify the situation by making my illness go as well as it possibly could! How else to explain what has transpired over the past, almost 6 months! Nowhere along the way has there been a step backwards or even a step sideways! That is hard to fathom with a situation like mine. It has truly been a miracle ride that only God can provide.
Now for the obligatory, "I'm feeling fine"! And, I'm looking forward to a beautiful spring day tomorrow and an even better weekend as they forecast temperatures in 70's for tomorrow and in the 80's for Saturday and Sunday. I'll try to spend as much time outside as I possibly can.
So much for today's entry...
Bob
April 22, 2009 11:15 PM 36 days to go
It was a great day at the clinic today. My counts were right on target indicating that the transplant is working as it should.
Last week, I was wondering why they took so many tubes of blood. Well, unbeknownst to me and my doctor they did another chimera test. The results showed that my bone marrow is now 100% that of my donor and the T-Cells are now 89%. These counts are up for 98% and 75% respectively. The good thing about these ever-increasing numbers is that it appears that I will not need another bone marrow biopsy in the near future.
Of course, the concern is now that graft vs host disease could take hold. However, given the fact that there are currently no symptoms that this is occurring, the staff at Dana-Farber thinks that it is less of a possibility. That was also a bit of good news.
We made appointments through the end of May which will complete the weekly visit regimen(and the 100 days) should all continue to go as it has. Likewise, we talked about having my Hickman catheter removed on the 29th of May. This will be a major milestone. The catheter will have been in for almost 7 months at that point in time and it will be nice to be rid of it.
At the conclusion of the once a week visits, the schedule changes to once a month for the remainder of the 12 month period. Most significantly, at that time, they will begin to wean me from the immuno-suppressants. The nurse practitioner said that they would not monkey with the immuno-suppressants at this point because things are going so well.
One interesting little tidbit did surface today. At the conclusion of the 12 month period I was told that they would begin to give me shots. When we questioned what kind of shots they were to be, we were told that they would be my "baby shots". That's right! I have to have all my baby shots once more! So I guess that when they say that the transplant is a kind of rebirth - they really mean it! The appointment interval will again be readjusted at this time to once every 2 months.
There is a downside to the 12 month milestone - they will schedule another bone marrow biopsy. What fun!
Boy, it's so easy to write an entry on Wednesdays...
Bob
Last week, I was wondering why they took so many tubes of blood. Well, unbeknownst to me and my doctor they did another chimera test. The results showed that my bone marrow is now 100% that of my donor and the T-Cells are now 89%. These counts are up for 98% and 75% respectively. The good thing about these ever-increasing numbers is that it appears that I will not need another bone marrow biopsy in the near future.
Of course, the concern is now that graft vs host disease could take hold. However, given the fact that there are currently no symptoms that this is occurring, the staff at Dana-Farber thinks that it is less of a possibility. That was also a bit of good news.
We made appointments through the end of May which will complete the weekly visit regimen(and the 100 days) should all continue to go as it has. Likewise, we talked about having my Hickman catheter removed on the 29th of May. This will be a major milestone. The catheter will have been in for almost 7 months at that point in time and it will be nice to be rid of it.
At the conclusion of the once a week visits, the schedule changes to once a month for the remainder of the 12 month period. Most significantly, at that time, they will begin to wean me from the immuno-suppressants. The nurse practitioner said that they would not monkey with the immuno-suppressants at this point because things are going so well.
One interesting little tidbit did surface today. At the conclusion of the 12 month period I was told that they would begin to give me shots. When we questioned what kind of shots they were to be, we were told that they would be my "baby shots". That's right! I have to have all my baby shots once more! So I guess that when they say that the transplant is a kind of rebirth - they really mean it! The appointment interval will again be readjusted at this time to once every 2 months.
There is a downside to the 12 month milestone - they will schedule another bone marrow biopsy. What fun!
Boy, it's so easy to write an entry on Wednesdays...
Bob
April 21, 2009 10:20 PM 37 days to go
A very rainy day today so there was no outside activities. Beyond walking, I have no other outside activities unless you consider lounging to be an activity.
Tomorrow it's up at 5 AM again for our weekly trek to Dana-Farber. But, the days are dwindling down and, after tomorrow, there will only be 5 more weekly appointments if all continues to go well.
And it does continue to go well for me. I'll be a little curious to see what my weight is tomorrow as some of my pants are now getting a little "large" for me. The scale at the clinic is a rather fancy one, as you can well imagine, and is much more accurate than our own plain vanilla bathroom scale.
Since I have discussed just about everything of relevance over the past week or so it's hard for me to find subjects to elaborate on that you will find of interest. I, of course, still desire that all of you continue to keep me in your thoughts and prayers as they have worked so well for me. Each day I feel so blessed that nothing seems to rock the boat. But, vigilance is still the watchword as there is a long way to go before we can consider ourselves to be in the final stretch.
All in all, today was another positive step in our journey...
Bob
Tomorrow it's up at 5 AM again for our weekly trek to Dana-Farber. But, the days are dwindling down and, after tomorrow, there will only be 5 more weekly appointments if all continues to go well.
And it does continue to go well for me. I'll be a little curious to see what my weight is tomorrow as some of my pants are now getting a little "large" for me. The scale at the clinic is a rather fancy one, as you can well imagine, and is much more accurate than our own plain vanilla bathroom scale.
Since I have discussed just about everything of relevance over the past week or so it's hard for me to find subjects to elaborate on that you will find of interest. I, of course, still desire that all of you continue to keep me in your thoughts and prayers as they have worked so well for me. Each day I feel so blessed that nothing seems to rock the boat. But, vigilance is still the watchword as there is a long way to go before we can consider ourselves to be in the final stretch.
All in all, today was another positive step in our journey...
Bob
April 20, 2009 9:25 PM 38 days to go
A very quiet day today.
I am feeling as good as I can feel. There were no issues of any kind today. Once again, when I hear what others have endured during this process, I have to be so thankful that I've avoided all of that! Your thoughts and prayers are continuing to do the job.
I really have nothing of any significance to say. Wednesday, of course, will provide the most information for the week.
I hate to make the entry short, but there is no reason to ramble on about things that would have little or no interest to you.
So, I will conclude at this time...
Bob
I am feeling as good as I can feel. There were no issues of any kind today. Once again, when I hear what others have endured during this process, I have to be so thankful that I've avoided all of that! Your thoughts and prayers are continuing to do the job.
I really have nothing of any significance to say. Wednesday, of course, will provide the most information for the week.
I hate to make the entry short, but there is no reason to ramble on about things that would have little or no interest to you.
So, I will conclude at this time...
Bob
April 19, 2009 10:45 PM 39 days to go
It was a really wonderful day today. The weather was great and we had the Greek side of the family over to celebrate Greek Easter. All that Greek food was terrific - those Greeks really know how to cook! And it's always a pleasure to have my wife's cousin come in from Kansas city to enjoy the day with us.
But the highlight is still the famous Johnson Easter Egg Hunt. It's always nice to have the choice of 2 Easters on which to do it because we can, hopefully, get good weather. When we started it back in New York for our own children, the kids almost enjoyed it more than Christmas. Needless to say, the grandchildren are now into it and to watch the joy on their faces brings even more joy to all of us adults. The day was made even more special as one of my granddaughters had a soccer game and scored 3 of her team's 7 goals.
As I said yesterday, I would go a little easy and not venture into overindulgence in any way and the day went well with no mishaps of any kind. So, I am guessing that Friday's bout with nausea was more food related than anything else. I do feel fine at the moment. About the only thing that seems to happen now is that I get a little tired once in a while. I am sure that some of this is related to the fact that my body is now really starting to mount its battle against the transplant. It's kind of ironic that the body tries to fight off the very thing that is helping to keep it alive! If it wins the battle, the war is most certainly lost.
All in all, a great day to have the family together and to celebrate all the good things that have happened to us and all the blessings that we do have. A time to celebrate the promise that God has for us all - eternal life!
Meanwhile, my mortal life continues apace...
Bob
But the highlight is still the famous Johnson Easter Egg Hunt. It's always nice to have the choice of 2 Easters on which to do it because we can, hopefully, get good weather. When we started it back in New York for our own children, the kids almost enjoyed it more than Christmas. Needless to say, the grandchildren are now into it and to watch the joy on their faces brings even more joy to all of us adults. The day was made even more special as one of my granddaughters had a soccer game and scored 3 of her team's 7 goals.
As I said yesterday, I would go a little easy and not venture into overindulgence in any way and the day went well with no mishaps of any kind. So, I am guessing that Friday's bout with nausea was more food related than anything else. I do feel fine at the moment. About the only thing that seems to happen now is that I get a little tired once in a while. I am sure that some of this is related to the fact that my body is now really starting to mount its battle against the transplant. It's kind of ironic that the body tries to fight off the very thing that is helping to keep it alive! If it wins the battle, the war is most certainly lost.
All in all, a great day to have the family together and to celebrate all the good things that have happened to us and all the blessings that we do have. A time to celebrate the promise that God has for us all - eternal life!
Meanwhile, my mortal life continues apace...
Bob
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