A pretty good day today. There was no nausea but I tend to feel a little punky today - for want of a more technical term. It's probably the start of graft vs host disease as I am now right on track for that to possibly begin(2-3 month timeframe from the date of the transplant). Another possibility is that I was requested to increase the dosage of one of my immuno-suppressants on Wednesday with nausea being one of the side effects of the drug.
However, I did eat all my meals today with no repercussions of any kind. So, we'll pay close attention to that. It will be a little tough with tomorrow being Greek Easter with all the trappings. But, I'll watch myself and I'm sure that everything will be fine.
For sure, I'll discuss all of this with the doctor on Wednesday.
One other subject that is probably love overdue to be discussed is the status of my hair. As we all know, it basically disappeared after the first round of chemo. The second round seemed to have no affect on my hair growth as it started to come back being basically dark in color. The third round, just before the transplant, again caused me to lose all that beautiful black hair. It started to come again a while later - but this time it was all white. For the past month or so that has been the story until just recently. Though I can't see it, my wife and daughter said that black hair is slowly returning on the back of my head. Maybe it will be a slow return this time. I still retain the buzz cut, however, as, without it, I kinda look like a puff ball. The white hair sticks straight up at all different lengths. In fact, we trimmed it today and the improvement was immediately evident(the hair that is - not me). This has not been a hair-raising experience! I just couldn't resist!
That's it for today, I'll let you know tomorrow night how I fared during the day.
Til then...
Bob
April 17, 2009 10:45 PM 41 days to go
Well, today was a first for me from the day that this all started - almost 6 months ago. It was not a first that I wish to repeat, however. After lunch, I had a bout with nausea and the nausea got the best of me. It seemed to go away after that and I had no problem eating dinner so I am theorizing that it was the food that did not agree with me and not something systemic. At this point there seems to be nothing to be concerned about. I guess that I can say that I still feel fine but, boy, it was a wakeup call that the situation can change in a heartbeat! Now I have a better understanding of how blessed I have been up to this point.
By the way, my dinner tonight was that delicious steak that I was given the go ahead to eat by the doctor on Wednesday!
Taking advantage of the beautiful spring day that we had today, we barbecued the steak. Likewise, we took a walk to get some fresh air and then sat outside for awhile as well in order to get as much from this really good spring day as we could.
One of my daughters was here today helping my wife prepare for Sunday's Greek Easter extravaganza. The smells emanating from the kitchen filled the house and added to the springtime atmosphere of the day.
Later in the afternoon, some neighbors stopped over and it put a nice cap on the day.
In conclusion, I guess that I can rightfully say that it was kind of a mixed day. But the good certainly far overshadowed the bad...
Bob
By the way, my dinner tonight was that delicious steak that I was given the go ahead to eat by the doctor on Wednesday!
Taking advantage of the beautiful spring day that we had today, we barbecued the steak. Likewise, we took a walk to get some fresh air and then sat outside for awhile as well in order to get as much from this really good spring day as we could.
One of my daughters was here today helping my wife prepare for Sunday's Greek Easter extravaganza. The smells emanating from the kitchen filled the house and added to the springtime atmosphere of the day.
Later in the afternoon, some neighbors stopped over and it put a nice cap on the day.
In conclusion, I guess that I can rightfully say that it was kind of a mixed day. But the good certainly far overshadowed the bad...
Bob
April 16, 2009 10:50 PM 42 days to go
As I was standing outside today and watering the springtime plants that are now coming to life once again, I got to thinking how, if things had gone for me as they well could have, I would not be here to enjoy the beauty of this renewed life. It certainly gives one pause to think that what you are looking at is something that you might very well have not been expected to see again. I tend to get wrapped up in and dwell upon the mundane activities of my day. But, I have to admit that, this year, I view quite differently the spectacle of the earth coming alive once more. And, I know that I will view quite differently the seasonal transitions that we so much look forward to as well. Everyday is a gift to me and I, in my limited capacity, will do my best to repay God for a gift that I know that I can never repay.
I know that each of you will take the daily changes in stride and I can fully understand that as I did so myself. But when I look at my condition and compare that to the passing of my coworker friend a few weeks back who had a disease similar to mine - it puts it all in perspective and it makes me wonder, at times, why have I been so fortunate? How can I convince you all to look at things a little differently? I don't think that I can. The daily grind of everyday life seems to take the luster off of what we have all been given - life itself! I know that baptism is a rebirth into the life of Christ but a bone marrow transplant is a physical rebirth that can't help but change your outlook forever. I do not recommend that each of you get one! I hope that you can vicariously experience the wonder of it all through this blog.
It's not only the seasons that I view differently. This Sunday is Greek Easter which we will celebrate together here. How different the day would be for everyone else if I were not here to join in the celebration(it's most certainly not because I am the life of the party)!
Today a friend came to visit and we had a good time talking sharing stories and ideas. I did help him with his problem of how to record your voice on the computer with a microphone. So, even though I am constrained to living within these 4 walls, I can still provide assistance to others in some capacity. It does help the ego a bit to know that you are still able to offer some of your expertise to help someone overcome a problem.
To conclude with the mandatory medical update - there is still no change in my medical condition...
Bob
I know that each of you will take the daily changes in stride and I can fully understand that as I did so myself. But when I look at my condition and compare that to the passing of my coworker friend a few weeks back who had a disease similar to mine - it puts it all in perspective and it makes me wonder, at times, why have I been so fortunate? How can I convince you all to look at things a little differently? I don't think that I can. The daily grind of everyday life seems to take the luster off of what we have all been given - life itself! I know that baptism is a rebirth into the life of Christ but a bone marrow transplant is a physical rebirth that can't help but change your outlook forever. I do not recommend that each of you get one! I hope that you can vicariously experience the wonder of it all through this blog.
It's not only the seasons that I view differently. This Sunday is Greek Easter which we will celebrate together here. How different the day would be for everyone else if I were not here to join in the celebration(it's most certainly not because I am the life of the party)!
Today a friend came to visit and we had a good time talking sharing stories and ideas. I did help him with his problem of how to record your voice on the computer with a microphone. So, even though I am constrained to living within these 4 walls, I can still provide assistance to others in some capacity. It does help the ego a bit to know that you are still able to offer some of your expertise to help someone overcome a problem.
To conclude with the mandatory medical update - there is still no change in my medical condition...
Bob
April 15, 2009 11:20 PM 43 days to go
I find that writing Wednesday's entry is a little easier as at least something of interest happens when I visit the clinic. I hope it's of interest to you - it certainly is of interest to me.
I find the trip to Boston to be fairly easy. Traffic moves at 5:30 in the morning. Whether it's because of the early hour or because of less traffic due to the economy or a combination of both I don't know. But it always seems to be a straightforward trip with no hassles - much appreciated.
Today's visit did not run quite true to form because even though they took my labs in plenty of time to have the results back for the doctor's visit - they weren't. Since my counts have always been fine, the doctor was unconcerned at the turn of events and said I could stay until they were ready or just have them e-mailed to me - we chose the latter so that we could leave ASAP. It's always a pleasure to minimize the time.
However, the visit was not without some some substance to it. As I mentioned yesterday, I did have a few questions that needed to be addressed. The first concerned my love for rare steak. I asked if that was going to be a possible delight at the end of the 100 days and he said that there was no reason why I could not have a rare steak now! This was a most unexpected response as we were told up front before we left the hospital that rare meat was a no-no! I have not had a steak in over 2 months so I am looking forward to this treat in the near future.
Rare hamburgers are still a not on the acceptable list and he launched into a few personal stories of people being affected with meningitis by eating rare hamburg. He said that no one should ever consider eating rare hamburg no matter what the status of their health.
The next question evolved around earlier comments that they were looking for a little graft versus host disease as part of the recovery process. I asked him why. He further qualified the comments by saying that, ideally, they would like none. However, a little can be handled and is not to be unexpected. Anything more than a little is cause for concern and can result in extended stays in the hospital. Let's all pray that that does not happen in my case.
Visiting others outside my home is still of concern to him at all times during the first year. I can understand the avoidance of crowds during this period but I think that controlled and limited visits outside while I'm being weaned off the immuno-suppressants would not be out of the question. This one we'll just have to play by ear as events unfold. The weaning off the immuno-suppressants will commence around the 90 day timeframe and he alluded to the fact that the dietary restrictions may start to be relaxed at that time as well.
The weaning period is probably going to be a little longer than initially thought. The reason for this is that my counts were e-mailed to me as I requested and, fortunately, were great as always. However, the results did show that the reading for one of my immuno-suppressants was a little low and it was recommended that I double my dose from 1 mg twice a day to 2 mg twice a day. This I have already started to do.
So, a rather long entry for a rather short visit - we left the clinic about 8:15. But, hopefully, it was as newsworthy for you as it was for me.
Just as aside here. Last week my wife and I commented to one of the nurses that she never seemed to sit still and was always on her feet walking from here to there. We asked if she had any idea how far she walked in a day and she said that she had no clue. So my wife picked up an inexpensive pedometer and gave it to her this morning. We're going to be very curious, when we go back next Wednesday, to see how far she travels in a day. I'll let you know.
Time to bring this entry to a close...
Bob
I find the trip to Boston to be fairly easy. Traffic moves at 5:30 in the morning. Whether it's because of the early hour or because of less traffic due to the economy or a combination of both I don't know. But it always seems to be a straightforward trip with no hassles - much appreciated.
Today's visit did not run quite true to form because even though they took my labs in plenty of time to have the results back for the doctor's visit - they weren't. Since my counts have always been fine, the doctor was unconcerned at the turn of events and said I could stay until they were ready or just have them e-mailed to me - we chose the latter so that we could leave ASAP. It's always a pleasure to minimize the time.
However, the visit was not without some some substance to it. As I mentioned yesterday, I did have a few questions that needed to be addressed. The first concerned my love for rare steak. I asked if that was going to be a possible delight at the end of the 100 days and he said that there was no reason why I could not have a rare steak now! This was a most unexpected response as we were told up front before we left the hospital that rare meat was a no-no! I have not had a steak in over 2 months so I am looking forward to this treat in the near future.
Rare hamburgers are still a not on the acceptable list and he launched into a few personal stories of people being affected with meningitis by eating rare hamburg. He said that no one should ever consider eating rare hamburg no matter what the status of their health.
The next question evolved around earlier comments that they were looking for a little graft versus host disease as part of the recovery process. I asked him why. He further qualified the comments by saying that, ideally, they would like none. However, a little can be handled and is not to be unexpected. Anything more than a little is cause for concern and can result in extended stays in the hospital. Let's all pray that that does not happen in my case.
Visiting others outside my home is still of concern to him at all times during the first year. I can understand the avoidance of crowds during this period but I think that controlled and limited visits outside while I'm being weaned off the immuno-suppressants would not be out of the question. This one we'll just have to play by ear as events unfold. The weaning off the immuno-suppressants will commence around the 90 day timeframe and he alluded to the fact that the dietary restrictions may start to be relaxed at that time as well.
The weaning period is probably going to be a little longer than initially thought. The reason for this is that my counts were e-mailed to me as I requested and, fortunately, were great as always. However, the results did show that the reading for one of my immuno-suppressants was a little low and it was recommended that I double my dose from 1 mg twice a day to 2 mg twice a day. This I have already started to do.
So, a rather long entry for a rather short visit - we left the clinic about 8:15. But, hopefully, it was as newsworthy for you as it was for me.
Just as aside here. Last week my wife and I commented to one of the nurses that she never seemed to sit still and was always on her feet walking from here to there. We asked if she had any idea how far she walked in a day and she said that she had no clue. So my wife picked up an inexpensive pedometer and gave it to her this morning. We're going to be very curious, when we go back next Wednesday, to see how far she travels in a day. I'll let you know.
Time to bring this entry to a close...
Bob
April 14, 2009 10:45 PM 44 days to go
It's the eve of tax day here in the states and it's the eve of my next visit to Dana-Farber. That gets to be(check that - IS) the highlight of my week. It's the only time that I travel anywhere!
So, tomorrow, we'll be up at 5 AM and out on the road by 5:30. Hopefully, it goes like last Wednesday and we conclude our visit before 8:00. Schedulewise, it shouldn't be a problem - but you never know. I do have a few questions to ask, so I'll have some more definitive information on a few items for tomorrow's entry.
Talking to a visitor today, I am still somewhat surprised that people continue to follow this blog on a daily basis even though there is not much of substance regarding my condition. Believe me, I really do appreciate it and I'm glad that people feel so compelled to read it every day. As I said before, I'll try to keep this blog interesting - but it does get challenging at times.
Now for the obligatory "I'm still feeling fine" comment.
That's about it for today. Even though I'll be rising at 5, I am still taking the time to watch the late starting , dreadful Red Sox game...
Bob
So, tomorrow, we'll be up at 5 AM and out on the road by 5:30. Hopefully, it goes like last Wednesday and we conclude our visit before 8:00. Schedulewise, it shouldn't be a problem - but you never know. I do have a few questions to ask, so I'll have some more definitive information on a few items for tomorrow's entry.
Talking to a visitor today, I am still somewhat surprised that people continue to follow this blog on a daily basis even though there is not much of substance regarding my condition. Believe me, I really do appreciate it and I'm glad that people feel so compelled to read it every day. As I said before, I'll try to keep this blog interesting - but it does get challenging at times.
Now for the obligatory "I'm still feeling fine" comment.
That's about it for today. Even though I'll be rising at 5, I am still taking the time to watch the late starting , dreadful Red Sox game...
Bob
April 13, 2009 11:30 PM 45 days to go
A verrry quiet day today. It was even too chilly to continue my onslaught on our windows.
As I said early on, I am not going to bore you with such scintillating details of my day such as what I had for breakfast, lunch, etc. I guess the most important thing, though, is that I still have an appetite and there are no side effects to be concerned about. I do have a lot to be thankful for.
Amazingly, I did my medication in only 1 business day instead of the 3 to 5 as communicated to us. I will never understand the postal service. So, now I am set until at least June which is a big relief. Hopefully, by then, I'll forget how frustrating the process really is.
So, a short entry for the day...
Bob
As I said early on, I am not going to bore you with such scintillating details of my day such as what I had for breakfast, lunch, etc. I guess the most important thing, though, is that I still have an appetite and there are no side effects to be concerned about. I do have a lot to be thankful for.
Amazingly, I did my medication in only 1 business day instead of the 3 to 5 as communicated to us. I will never understand the postal service. So, now I am set until at least June which is a big relief. Hopefully, by then, I'll forget how frustrating the process really is.
So, a short entry for the day...
Bob
April 12, 2009 9:40 PM 46 days to go
I hope that everyone had a wonderful Easter. I did have a quiet day(missing church was certainly a downer) as you can well imagine. Two friends did call today and that was really much appreciated and certainly helped to make my day more enjoyable.
I spent the day with my son and, as you can well imagine, we watched sports most of the time that he was here. So I was not alone for the day. My wife went to her sister's for the day and I am glad that she had a chance to get out. I have to remain here for awhile but there is no reason that she has to make herself a captive here as well.
I am still feeling fine. I sometimes wonder if I should only comment on my health if things get a little bit out of alignment - which, mind you, has yet to happen! Then I could cease the incessant, everyday "I feel fine" mantra. It must be boring to all of you unless you only intermittently tune in. Then, of course, you pay the price by missing all of the sage comments that I had to say on those days that you skipped!!!
Now, to prepare for next Easter. I have to have goals even if they seem so far away at this point in time...
Bob
I spent the day with my son and, as you can well imagine, we watched sports most of the time that he was here. So I was not alone for the day. My wife went to her sister's for the day and I am glad that she had a chance to get out. I have to remain here for awhile but there is no reason that she has to make herself a captive here as well.
I am still feeling fine. I sometimes wonder if I should only comment on my health if things get a little bit out of alignment - which, mind you, has yet to happen! Then I could cease the incessant, everyday "I feel fine" mantra. It must be boring to all of you unless you only intermittently tune in. Then, of course, you pay the price by missing all of the sage comments that I had to say on those days that you skipped!!!
Now, to prepare for next Easter. I have to have goals even if they seem so far away at this point in time...
Bob
Subscribe to:
Posts (Atom)
