Another day of feeling fine.
Tomorrow we'll have a crowd of family members over to celebrate my sister-in-law's birthday. It will be the first time that I'll get to see my mother-in-law since I had the transplant. I know that she is looking forward to it. Truth be told, family is important and when you are 91 that is just about all you have left in life. And, to her, I am still "just a kid". It's all so relative, isn't it.
There was a bit of excitement to the day if you are a college hockey fan. UNH pulled out a miracle win this afternoon. Tomorrow they face high-powered BU and it will certianly be a challenge to duplicate today's result.
So, the beat goes on - just the way we want it to...
Bob
March 27, 2009 11:15 PM 62 days to go
Nothing of any importance to report today on the medical front. I still continue to feel fine.
About the only thing that I can address for the day is the fact that we have to do constant battle with our medical insurance company, the long term disability insurance company, and now the internet prescription provider company. Today it was the latter 2. Calling these companies always generates the usual push 1- enter your member ID, push 3 - enter the last 4 digits of your social security number, push 4 -enter your birth date, push 2 - on a scale of 1-10 enter your frustration level, etc. I don't think that any of these companies actually have any live people working for them!
We did "finally" resolve the issues - but you never really know for sure.
So the day count continues to diminish and I continue to hold the fort. I must say that feeling as well as I do, limiting myself to walking around the neighborhood(as we did today) is nothing but a tease for me because there is literally nothing else that I am allowed to do and I feel that I am able to lead a "normal" life.
Well, that's my story for the day...
Bob
About the only thing that I can address for the day is the fact that we have to do constant battle with our medical insurance company, the long term disability insurance company, and now the internet prescription provider company. Today it was the latter 2. Calling these companies always generates the usual push 1- enter your member ID, push 3 - enter the last 4 digits of your social security number, push 4 -enter your birth date, push 2 - on a scale of 1-10 enter your frustration level, etc. I don't think that any of these companies actually have any live people working for them!
We did "finally" resolve the issues - but you never really know for sure.
So the day count continues to diminish and I continue to hold the fort. I must say that feeling as well as I do, limiting myself to walking around the neighborhood(as we did today) is nothing but a tease for me because there is literally nothing else that I am allowed to do and I feel that I am able to lead a "normal" life.
Well, that's my story for the day...
Bob
March 26, 2009 11:55 PM 63 days to go
There is obviously nothing that I write that can top yesterday's news. In fact there really is no news today other than I am feeling fine.
About the only that comes to mind is a little off topic. I was reading an article today about the fact that only a handful of hospitals in this country keep their medical records in electronic format. If that is truly the case, then let me tell you, Dana-Farber is at the forefront of technology in this area. Everything is computerized such that things can be accomplished instantly. From the setting up of appointments to the dispensing and referencing of medical test results - it is all done online and done such that everyone has reference to the information. The moment that my blood samples are run in the lab, the results are automatically put online and everyone can instantly access them. One of the nicer features of their system is that they can columnize my blood test results, for example, and immediately compare today's result with those from the past few weeks in order to look for trends. And this can be done on any computer!
So much for the computer lesson. But it is part of my overall experience and it is very impressive!
A little more on topic, I did go for a walk today. Ever since that first walk whereupon my legs were somewhat sore upon its completion, I do not suffer any more soreness. The weather here is still so-so, but we'll take walks as the weather allows.
That's about it for today - got to go back and watch a little March madness...
Bob
About the only that comes to mind is a little off topic. I was reading an article today about the fact that only a handful of hospitals in this country keep their medical records in electronic format. If that is truly the case, then let me tell you, Dana-Farber is at the forefront of technology in this area. Everything is computerized such that things can be accomplished instantly. From the setting up of appointments to the dispensing and referencing of medical test results - it is all done online and done such that everyone has reference to the information. The moment that my blood samples are run in the lab, the results are automatically put online and everyone can instantly access them. One of the nicer features of their system is that they can columnize my blood test results, for example, and immediately compare today's result with those from the past few weeks in order to look for trends. And this can be done on any computer!
So much for the computer lesson. But it is part of my overall experience and it is very impressive!
A little more on topic, I did go for a walk today. Ever since that first walk whereupon my legs were somewhat sore upon its completion, I do not suffer any more soreness. The weather here is still so-so, but we'll take walks as the weather allows.
That's about it for today - got to go back and watch a little March madness...
Bob
March 25, 2009 10:45 PM 64 days to go
The earlier really says it all. But as I mentioned, there is more to the story for those of you who might be interested in getting the full scoop.
My blood counts, as usual, were on the money and the nurse practioner, who we saw today, says that they indicate that my body is making its own blood cells just fine. Just to let you know, not everything is fully back to "normal", but it is where it's supposed be at this point in time.
As for the 98% number - they were looking at anything in in excess of 70% as being OK. So we are way above the benchmark. Some of you have already asked if the number will go to 100%. I guess that my wife and I were bowled over by the great news that we heard because we never asked that question. There was also one other funky number that my wife and I did not fully grasp that they were looking at 40% as a target and I was at 70%. So everything is tracking perfectly at this point in time. They will, however, do another chimera test in a month to make sure that I am maintaining the status quo. This is no big deal as it is simply a blood test - not the pain in the butt that a bone marrow biopsy is.
And to know that there is no sign of the cancer anywhere has been a great relief. Since we could not go out to dinner to celebrate, my wife stopped at the supermarket and bought a couple of lobsters. They were somewhat expensive - but worth every penny of it!
When you add to all of the great news, as detailed above, the fact that I am suffering no side effects from anything at this point in time, one could not ask for a better situation given the circumstances. The nurse basically said that I am sailing through this part of the recovery process as well as I have sailed through the 2 rounds of chemo that I had earlier on.
I thank you all so much for your prayers and support. We are winning battle after battle at this point so, hopefully, that translates into winning the war as well.
One little side comment. With the warmer weather approaching, I have to be very careful about not getting a sunburn. Obviously, a sunburn triggers a reaction by the body to overcome it and, according to the nurse, with my immune system being compromised I don't have all the resources to fight an I leave myself open to infection. So I guess that I will have to forego being that bronzed Adonis for this summer. But there will be others.
I think that about says it all for this milestone day on my way to making a full recovery.
Thank you all again...
Bob
My blood counts, as usual, were on the money and the nurse practioner, who we saw today, says that they indicate that my body is making its own blood cells just fine. Just to let you know, not everything is fully back to "normal", but it is where it's supposed be at this point in time.
As for the 98% number - they were looking at anything in in excess of 70% as being OK. So we are way above the benchmark. Some of you have already asked if the number will go to 100%. I guess that my wife and I were bowled over by the great news that we heard because we never asked that question. There was also one other funky number that my wife and I did not fully grasp that they were looking at 40% as a target and I was at 70%. So everything is tracking perfectly at this point in time. They will, however, do another chimera test in a month to make sure that I am maintaining the status quo. This is no big deal as it is simply a blood test - not the pain in the butt that a bone marrow biopsy is.
And to know that there is no sign of the cancer anywhere has been a great relief. Since we could not go out to dinner to celebrate, my wife stopped at the supermarket and bought a couple of lobsters. They were somewhat expensive - but worth every penny of it!
When you add to all of the great news, as detailed above, the fact that I am suffering no side effects from anything at this point in time, one could not ask for a better situation given the circumstances. The nurse basically said that I am sailing through this part of the recovery process as well as I have sailed through the 2 rounds of chemo that I had earlier on.
I thank you all so much for your prayers and support. We are winning battle after battle at this point so, hopefully, that translates into winning the war as well.
One little side comment. With the warmer weather approaching, I have to be very careful about not getting a sunburn. Obviously, a sunburn triggers a reaction by the body to overcome it and, according to the nurse, with my immune system being compromised I don't have all the resources to fight an I leave myself open to infection. So I guess that I will have to forego being that bronzed Adonis for this summer. But there will be others.
I think that about says it all for this milestone day on my way to making a full recovery.
Thank you all again...
Bob
March 25, 2009 11:15 AM 64 days to go
NEWS FLASH!!!
WE DID IT!!!!!!!
Dana-Farber had the results from both the bone marrow biopsy and the chimera test and the results are....
-THERE IS NO SIGN OF THE CANCER!!!
-MY BONE MARROW IS 98% THAT OF THE DONOR'S SO THE TRANSPLANT HAS TAKEN!!!
I'll provide a more detailed entry later on today.
Bob
WE DID IT!!!!!!!
Dana-Farber had the results from both the bone marrow biopsy and the chimera test and the results are....
-THERE IS NO SIGN OF THE CANCER!!!
-MY BONE MARROW IS 98% THAT OF THE DONOR'S SO THE TRANSPLANT HAS TAKEN!!!
I'll provide a more detailed entry later on today.
Bob
March 24, 2009 10:45 PM 65 days to go
Tomorrow is going to be a rather telling day...
- does it look like the bone marrow transplant took?
- is there any sign of the cancer?
Needless to say, I feel like a schoolboy waiting to see my test results after the big exam - except that there is a lot more riding on passing and failing that just a letter grade. Don't get me wrong, I feel very confident about what the results will be - but there is a big difference between feeling confident and actually knowing!
So it'll be somewhat of an early rising day - we have to be there by 8:30. Though Lord knows why, we never seem to get taken at the appointment time. After, the lab session, it's the doctor at 9:15(not too likely!) and then it should be home once again. Not a long day, but it's certainly going to be an eventful one.
Once we know that there is no cancer; once we know that the transplant has taken; we are down to only one more hurdle - my reaction to graft vs host disease. This should occur sometime in the next month or two. Lasting for how long, I do not know. And then it's just let the days go by until I have reached full recovery.
As for today, once again I am doing fine. And, I did feel good about finally solving a Microsoft Frontpage problem for a friend. I am certainly no expert here and it's taken a whole week to do it - but it does make me feel good that I can still contribute to society even though I can't leave the house.
So that's it for another day, big doings tomorrow...
Bob
- does it look like the bone marrow transplant took?
- is there any sign of the cancer?
Needless to say, I feel like a schoolboy waiting to see my test results after the big exam - except that there is a lot more riding on passing and failing that just a letter grade. Don't get me wrong, I feel very confident about what the results will be - but there is a big difference between feeling confident and actually knowing!
So it'll be somewhat of an early rising day - we have to be there by 8:30. Though Lord knows why, we never seem to get taken at the appointment time. After, the lab session, it's the doctor at 9:15(not too likely!) and then it should be home once again. Not a long day, but it's certainly going to be an eventful one.
Once we know that there is no cancer; once we know that the transplant has taken; we are down to only one more hurdle - my reaction to graft vs host disease. This should occur sometime in the next month or two. Lasting for how long, I do not know. And then it's just let the days go by until I have reached full recovery.
As for today, once again I am doing fine. And, I did feel good about finally solving a Microsoft Frontpage problem for a friend. I am certainly no expert here and it's taken a whole week to do it - but it does make me feel good that I can still contribute to society even though I can't leave the house.
So that's it for another day, big doings tomorrow...
Bob
March 23, 2009 11:00 PM 66 days to go
Well, I'm a third of the way there. It's hard to imagine - but the time seems to be going by relatively quickly.
As usual, I feel fine. About the only side effect from my last visit to the hospital is that I, once again, lost a lot of the hair on the top of my head. But that seems to be it. Unlike the first time, my facial hair has remained and I'm forced to shave. Having that "baby-ass" smooth face came in handy because I didn't have to shave for weeks! How convenient!
One thing that I did not mention from last Wednesday was the fact that they had a nursing student view my bone marrow biopsy. She had never seen one before and they were a little concerned that she might pass out. I know that if I saw it, I would definitely pass out. But, fortunately, it's taken from the hip bone just above your butt so I never have the "opportunity" to view it - try as I may.
When we were all done, the nurse practitioner then put some ointment and bandages on the spot in order to aid the healing process. When I suggested that she kiss it to "make it all better", with a laugh, she politely declined - so much for professional, supportive nursing care!
I'm still waiting for the weather to warm up once again so that I can go out walking. Of course, the one year when I can really take advantage of nice warm spring weather - we don't seem to get any!
That's about it for today's entry as we slowly advance to getting the first of my major results back on Wednesday.
Bob
As usual, I feel fine. About the only side effect from my last visit to the hospital is that I, once again, lost a lot of the hair on the top of my head. But that seems to be it. Unlike the first time, my facial hair has remained and I'm forced to shave. Having that "baby-ass" smooth face came in handy because I didn't have to shave for weeks! How convenient!
One thing that I did not mention from last Wednesday was the fact that they had a nursing student view my bone marrow biopsy. She had never seen one before and they were a little concerned that she might pass out. I know that if I saw it, I would definitely pass out. But, fortunately, it's taken from the hip bone just above your butt so I never have the "opportunity" to view it - try as I may.
When we were all done, the nurse practitioner then put some ointment and bandages on the spot in order to aid the healing process. When I suggested that she kiss it to "make it all better", with a laugh, she politely declined - so much for professional, supportive nursing care!
I'm still waiting for the weather to warm up once again so that I can go out walking. Of course, the one year when I can really take advantage of nice warm spring weather - we don't seem to get any!
That's about it for today's entry as we slowly advance to getting the first of my major results back on Wednesday.
Bob
March 22, 2009 11:55 PM 67 days to go
As I sit down to write today's entry, I'll share with you what I feel like everyday when I do this. To my way of thinking, it's somewhat like a radio personality who sits behind a microphone with no idea how many people are out there listening. I have no idea how many people follow this blog and no way of ascertaining that number.
Whatever the number may be, it won't change the fact that I fully intend to keep on doing the daily entries until the doctors tell me that I can return to my usual, boring life. However, it won't be very routine for me anymore as I will have a whole new perspective on eating out at a restaurant, going to the movies, attending church, etc. We take all that for granted until circumstances deprive us of those activities.
As usual, for me, today is just like any other day - I am still doing fine. I do enjoy the fact that I am now down to only 5 medications a day and that the days do seem to go by rather quickly. This is probably the only time in my life that I will ever wish my life away.
I have to admit that I am eager to get the results from Wednesday's bone marrow biopsy. Though I assume it will be OK, it will be nice to have a confirmed result.
A total change of subject, my wife and I just finished a very challenging jigsaw puzzle today but were very annoyed to find out that there was 1 piece missing. This is the second time in the last 3 puzzles that a piece has been missing. Why can't the puzzle makers institute better quality control? It does get disappointing to get to the end and have this hole in the completed puzzle. See, this is what life has come to for me - something like a missing puzzle piece takes on a level of importance that would never have existed before!
And so, another "non"-eventful day comes to a close...
Bob
Whatever the number may be, it won't change the fact that I fully intend to keep on doing the daily entries until the doctors tell me that I can return to my usual, boring life. However, it won't be very routine for me anymore as I will have a whole new perspective on eating out at a restaurant, going to the movies, attending church, etc. We take all that for granted until circumstances deprive us of those activities.
As usual, for me, today is just like any other day - I am still doing fine. I do enjoy the fact that I am now down to only 5 medications a day and that the days do seem to go by rather quickly. This is probably the only time in my life that I will ever wish my life away.
I have to admit that I am eager to get the results from Wednesday's bone marrow biopsy. Though I assume it will be OK, it will be nice to have a confirmed result.
A total change of subject, my wife and I just finished a very challenging jigsaw puzzle today but were very annoyed to find out that there was 1 piece missing. This is the second time in the last 3 puzzles that a piece has been missing. Why can't the puzzle makers institute better quality control? It does get disappointing to get to the end and have this hole in the completed puzzle. See, this is what life has come to for me - something like a missing puzzle piece takes on a level of importance that would never have existed before!
And so, another "non"-eventful day comes to a close...
Bob
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