Got interrupted last night as company arrived before I got a chance to lay a few more things on the table.
First of all, not much doing vis-a-vis doctor's visits - after all it's Saturday! But we had a wonderful night tonight as friends of ours came by as well as my sister-in-law and brother-in-law and we all went to dinner at a local Chinese restaurant where the help treated us very well and the food was excellent. It was a great evening!
Now back to the more mundane stuff. Of course, I am blessed that such a perfect donor has been found. As I said the other day, God's angels are everywhere and it's wonderful to think that, once again, I have been touched by one. Why me! The other part of the equation is that I cannot even begin to find out who the donor is for at least a year! Here is someone who is giving me the gift of life and I cannot even say a simple thank you. Likewise, in a year's time, if the donor still wishes to remain anonymous then I will never find out who the individual might be.
The other thing that I would like to comment on is how fortunate I am! That's correct, how fortunate I am!
When we go down to the Dana-Farber clinic on Fridays, we wait in a waiting area that may hold about 40 people. When you see the condition of some of these people, you realize just how lucky you are! I have no right to complain about anything that I might be suffering from. Not that I do, mind you(yah, right!). I have been so blessed to feel as well as I have from the get-go that sometimes it's easy for me to forget that I am ill. These other people do not have that luxury. So every Friday I get exposed to another of life's teachings - that no matter how desperate or disasterous your situation may appear to be, there is always someone worse off than you are. As they say, "There, but for the grace of God, go I" How true, how true. And I have all of you to thank for that. Even though I know that none of you expects anything in return, it's still a gift that I can never repay. Such is God's grace...
It's getting late... I'm getting tired... So, that's all for now....
Bob
January 16, 2009 7:00
Well, you have all done it again!
Your prayers(and mine) have been answered - a bone marrow donor HAS BEEN FOUND and the bone marrow donor is a PERFECT MATCH!!!!! Thank you God! Surprisingly, if a donor is found, there is about an 80% chance that the match will be perfect. But that is "if" a donor is found.
So, the schedule is somewhat set that I will go back into the hospital on February 11th, undergo a mini-chemotherapy session for 4 days, take a day off, and then have the transplant. About 2 days after the transplant, I get to go home. So the total hospital stay is about 8 days. Amazingly, not but 10 years ago, they would not have done the transplant. For whatever reason, they capped the age at 40! Those of us who are seniors are eternally grateful that some people had open minds and have provided us with a chance.
Once the transplant has been performed, of course, we are back in God's hands once again as the delicate game of adjusting immuno-suppressive medication begins to control the marrow such that it attacks the leukemic cells in my body and avoids attacking my liver, my kidneys, and my whatever. The doctors (and me) are going to need all the support that can be mustered for them at this time. Needless to say, my medicine cabinet is going to look like a pharmacy at this point in time.
After about 6 weeks, a DNA test will be done to see if my DNA is really now only 20% me and 80% that of the donor. If so, the indication would be that the new marrow has taken hold. So that will be the next big-big-big milestone.
While all that is happening, I'll be in the delightful 100 day window after the transplant whereby my diet and activities are highly restricted and my alcoholic intake is to be non-existent. But I'll get into the gory details of that at another time.
I also had 2 tests today as well. One being an EKG which I passed with flying colors - the other being the MUGA test which is designed to capture the functionality of my left ventricle. It is used as a baseline test that can be run again after the transplant, if necessary, to confirm how the status has changed - if at all. Since it basically takes movies, I never saw the results of the test. However, to perform it, they had to inject a radioactive tracer into me which will remain with me for 3 days. I was disappointed to see that tonight, when I turned off the lights, I did not glow in the dark! In any case, you simply lie motionless on a slab for approximately 15 minutes while the machine does its thing taking the movies. You do this 3 times so that the angle of the machine can be altered.
Company has just arrived - so I'll call it quits for tonight and continue tomorrow.
Again, thank you all for your prayers, we successfully passed over another hurdle. I could not have done it without you!
Bob
Your prayers(and mine) have been answered - a bone marrow donor HAS BEEN FOUND and the bone marrow donor is a PERFECT MATCH!!!!! Thank you God! Surprisingly, if a donor is found, there is about an 80% chance that the match will be perfect. But that is "if" a donor is found.
So, the schedule is somewhat set that I will go back into the hospital on February 11th, undergo a mini-chemotherapy session for 4 days, take a day off, and then have the transplant. About 2 days after the transplant, I get to go home. So the total hospital stay is about 8 days. Amazingly, not but 10 years ago, they would not have done the transplant. For whatever reason, they capped the age at 40! Those of us who are seniors are eternally grateful that some people had open minds and have provided us with a chance.
Once the transplant has been performed, of course, we are back in God's hands once again as the delicate game of adjusting immuno-suppressive medication begins to control the marrow such that it attacks the leukemic cells in my body and avoids attacking my liver, my kidneys, and my whatever. The doctors (and me) are going to need all the support that can be mustered for them at this time. Needless to say, my medicine cabinet is going to look like a pharmacy at this point in time.
After about 6 weeks, a DNA test will be done to see if my DNA is really now only 20% me and 80% that of the donor. If so, the indication would be that the new marrow has taken hold. So that will be the next big-big-big milestone.
While all that is happening, I'll be in the delightful 100 day window after the transplant whereby my diet and activities are highly restricted and my alcoholic intake is to be non-existent. But I'll get into the gory details of that at another time.
I also had 2 tests today as well. One being an EKG which I passed with flying colors - the other being the MUGA test which is designed to capture the functionality of my left ventricle. It is used as a baseline test that can be run again after the transplant, if necessary, to confirm how the status has changed - if at all. Since it basically takes movies, I never saw the results of the test. However, to perform it, they had to inject a radioactive tracer into me which will remain with me for 3 days. I was disappointed to see that tonight, when I turned off the lights, I did not glow in the dark! In any case, you simply lie motionless on a slab for approximately 15 minutes while the machine does its thing taking the movies. You do this 3 times so that the angle of the machine can be altered.
Company has just arrived - so I'll call it quits for tonight and continue tomorrow.
Again, thank you all for your prayers, we successfully passed over another hurdle. I could not have done it without you!
Bob
January 15, 2009 10:45 PM
There is really nothing to say today since I did not have to go anywhere and it was too cold to go outside anyway. I don't look forward to tomorrow when the projected high is to be in the single digits. As Jimmy Buffet says in the song Boat Drinks, "I want to go where it's warm!" Boy, does he have that right.
Anyway, tomorrow it all starts at 8:30 and ends sometime in mid-afternoon at Dana-Farber consisting of tets and consultations. So I expect to have a lot to share tomorrow evening.
Until then......
Bob
Anyway, tomorrow it all starts at 8:30 and ends sometime in mid-afternoon at Dana-Farber consisting of tets and consultations. So I expect to have a lot to share tomorrow evening.
Until then......
Bob
January 14, 2009 9:30 PM
The big news of the day has nothing to do with anything that I was involved in. The company that I work for(Nortel), filed for chapter 11 bankruptcy protection today! So what does it all mean? For me, there is no immediate impact. However, for all those layed off back in December the news is devastating - their severance packages come to a screeching halt! This includes health insurance coverage and any other benefits that they might have had as well. Furthermore, should there be any future layoffs, the company is now not obligated to provide any kind of a severance package!
As for more personal news, I spent several hours at the dentist's office today. Part of the effort was to update my records and send the information on down to Dana-Farber, I got my teeth cleaned as well, and finally got the crown put on that was supposed to have happened in November.
What a teeth cleaning! When they use the sonic cleaner, they usually use water with it - not today! The hygienist used some kind of antiseptic cleaner as well so that each and every tooth was antiseptically cleaned right down into the gum line. Additionally, another antiseptic was deposited in some of my "deeper pockets" to further ward off bacteria. All this extra effort was done to make sure that my mouth was completely ready when I went into the hospital the next time. My mouth is now so antiseptically clean that my teeth squeek when I rub them together!
The crown replacement went off without a hitch as well! I am so eternally grateful to my dentist and his staff for rearranging their schedules to accommodate me - they are certainly all very caring people. This is another example of people coming forward to help someone in a time of need. This is the one true blessing that I have seen from all that I have undergone up to now.
The average person is a good person and will, without any hesitation, step forward and demonstrate that when the need arises. Sadly, the news does not focus on this kind of thing and we get a jaded view of people and of our society. But, rest assured, that God's angels are many and they are everywhere - what a comforting thought!
Bob
As for more personal news, I spent several hours at the dentist's office today. Part of the effort was to update my records and send the information on down to Dana-Farber, I got my teeth cleaned as well, and finally got the crown put on that was supposed to have happened in November.
What a teeth cleaning! When they use the sonic cleaner, they usually use water with it - not today! The hygienist used some kind of antiseptic cleaner as well so that each and every tooth was antiseptically cleaned right down into the gum line. Additionally, another antiseptic was deposited in some of my "deeper pockets" to further ward off bacteria. All this extra effort was done to make sure that my mouth was completely ready when I went into the hospital the next time. My mouth is now so antiseptically clean that my teeth squeek when I rub them together!
The crown replacement went off without a hitch as well! I am so eternally grateful to my dentist and his staff for rearranging their schedules to accommodate me - they are certainly all very caring people. This is another example of people coming forward to help someone in a time of need. This is the one true blessing that I have seen from all that I have undergone up to now.
The average person is a good person and will, without any hesitation, step forward and demonstrate that when the need arises. Sadly, the news does not focus on this kind of thing and we get a jaded view of people and of our society. But, rest assured, that God's angels are many and they are everywhere - what a comforting thought!
Bob
January 13, 2009 10:15 PM
The days seem to kind of blend each one into the following one. Yes, there have been a few unique things that have had to be done such as today's chest x-ray and tomorrow's dentist appointment for a cleaning(boy, they're going to be somewhat upset with me because for the better part of the last three months I haven't been able to actually brush my teeth! I'll really get my money's worth on the cleaning, however) and to finally have the crown put on the temporary that I have had in my mouth since the day that I first went into the hospital to be diagnosed. This far exceeds the 3 week gap that was originally scheduled but the temporary has held up very well - maybe because I couldn't brush my teeth that often!
From the doctor's standpoint on Monday my mouth looked fine. Now we'll see what the dentist has to say!
That's about it right now. Mum still seems to be the word on the bone marrow transplant at this point. So we are kind of traveling in the dark here not knowing exactly where we are going or when we will get there.
Bob
From the doctor's standpoint on Monday my mouth looked fine. Now we'll see what the dentist has to say!
That's about it right now. Mum still seems to be the word on the bone marrow transplant at this point. So we are kind of traveling in the dark here not knowing exactly where we are going or when we will get there.
Bob
January 12, 2009 11:00 PM
Well, one of my doctor's told me that with my disease I would have to look at each day differently than I ever did before. I have to admit that, because I have felt as well as I have, that I have not really done that and to my way of thinking that is good because I feel no sense of urgency about my condition . Maybe I should - but I just look at this whole episode as kind of a speed bump on the highway of life.
So, what am I driving at here? For me, today was a day to look at and to relish. I went to clinic this morning, found out that my counts were excellent(as expected); got to talk to the doctor early so that the entire clinic experience lasted from 8:00 to 8:30(unexpected - but a wonderful gift); went to an early afternoon movie(finally, I can start to live life again!); and, finally, went to dinner at a friend's house(which was wonderful all around - the food, being able to be with friends, and getting out of the house). It truly was a wonderful day!
The whole day was capped off by my Boston doctor leaving a phone message during which she also agreed that my counts looked excellent as well.
So we have reached the highpoint of my existence once again whereby I can almost function as a normal person. (As an aside, my tastebuds still seem to be improving as well and are almost back to normal.) As I said before, we don't appreciate things until they are taken away from us - that's just human nature.
Once again, I thank you for all your thoughts and prayers, they continue to hold me up and they continue to generate the results that we are all looking for(well... me for sure!!).
God bless you all!
Bob
So, what am I driving at here? For me, today was a day to look at and to relish. I went to clinic this morning, found out that my counts were excellent(as expected); got to talk to the doctor early so that the entire clinic experience lasted from 8:00 to 8:30(unexpected - but a wonderful gift); went to an early afternoon movie(finally, I can start to live life again!); and, finally, went to dinner at a friend's house(which was wonderful all around - the food, being able to be with friends, and getting out of the house). It truly was a wonderful day!
The whole day was capped off by my Boston doctor leaving a phone message during which she also agreed that my counts looked excellent as well.
So we have reached the highpoint of my existence once again whereby I can almost function as a normal person. (As an aside, my tastebuds still seem to be improving as well and are almost back to normal.) As I said before, we don't appreciate things until they are taken away from us - that's just human nature.
Once again, I thank you for all your thoughts and prayers, they continue to hold me up and they continue to generate the results that we are all looking for(well... me for sure!!).
God bless you all!
Bob
January 11, 2009 9:15 PM
A really quiet day today. Since we got about 9 inches of snow, it was just a day to stay at home. In fact, friends of ours, who were to visit, cancelled out because of the weather. This was certainly understandable considering that there was a 59 vehicle pileup on route 93 northbound in New Hampshire which closed the road for about 5 hours.
Tomorrow's visit to the clinic in Manchester is just a maintenance visit which I am sure will result in nothing since my last 5 maintenance visits have required no infusions of any kind. In any case, I'll report on the results tomorrow night as I have always done.
So that's really it for the day. We are in the calm before the storm mode as in a few weeks there will certainly be a lot of developments during the bone marrow transplant.
Bob
Tomorrow's visit to the clinic in Manchester is just a maintenance visit which I am sure will result in nothing since my last 5 maintenance visits have required no infusions of any kind. In any case, I'll report on the results tomorrow night as I have always done.
So that's really it for the day. We are in the calm before the storm mode as in a few weeks there will certainly be a lot of developments during the bone marrow transplant.
Bob
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