It's Saturday, so life is quiet on the medical front.
But I did have the opportunity to see 4 of my grandchildren today and that was certainly a treat. I had to go out to see 2 of them and it emphasizes how unprepared I am winter. Since I stay in most of the time, I have not had the opportunity to adjust to the cold winter weather and every time I go out it seems so cold - even if the temperature is around 30 degrees! Usually by this time in the winter, my body has adjusted to the cold weather and I have no problem with it - but not this year! I suppose that I could blame it on the chemotherapy - but I don't feel that way about it. This year, this gives me another reason to hate January and I hear that it's going to get even colder this coming weekend. Spring can not come soon enough!
As my father used to say, "Many are cold, but few are frozen!"
Bob
January 9, 2009 11:20 PM
As expected, my counts were acceptable at Dana-Farber this morning and I did not need any infusions. That's always great news because it allows you to leave the clinic early and does not have a serious impact on your day. It afforded us the luxury of eating lunch with my mother-in-law today (much to her pleasant surprise). So it was a good day.
The other news is that yesterday while we were for dinner, someone called from Dana-Farber and left a message to contact them concerning an update as to where we stood on the bone marrow transplant front. We tried to contact them today and were unsuccessful. So no actual details exist. However, the Dana-Farber people called my dentist's office and said that they needed to provide x-rays and details of my oral health by this coming Thursday. So I have an appointment on Wednesday and they will overnight the information to Boston. From this, we are concluding that the transplant will occur in early February as forecast earlier. This further implies that a donor has been found! Alleluia!!!
Likewise, I have an appointment on Tueday for a chest x-ray that is part of this process as well. So everything seems to be falling place. They also (finally!!!) located the records for my colonoscopy which must be current as well. I had it done about 8 years ago and was told not to come back for 10 years(I was heartbroken!) and they had all kinds of problems trying to track down the test results. The prospect of undergoing such a fun procedure again along with everything else would literally have been a case of "taking one for the team"!
All good news! Let's get the next step going as fast as we can so that I can get back on my feet as fast as I can.
Again, please don't forget the bone marrow drive to held on February 7th at Hampshire Hills in Milford, NH from 10 -2.
Bob
The other news is that yesterday while we were for dinner, someone called from Dana-Farber and left a message to contact them concerning an update as to where we stood on the bone marrow transplant front. We tried to contact them today and were unsuccessful. So no actual details exist. However, the Dana-Farber people called my dentist's office and said that they needed to provide x-rays and details of my oral health by this coming Thursday. So I have an appointment on Wednesday and they will overnight the information to Boston. From this, we are concluding that the transplant will occur in early February as forecast earlier. This further implies that a donor has been found! Alleluia!!!
Likewise, I have an appointment on Tueday for a chest x-ray that is part of this process as well. So everything seems to be falling place. They also (finally!!!) located the records for my colonoscopy which must be current as well. I had it done about 8 years ago and was told not to come back for 10 years(I was heartbroken!) and they had all kinds of problems trying to track down the test results. The prospect of undergoing such a fun procedure again along with everything else would literally have been a case of "taking one for the team"!
All good news! Let's get the next step going as fast as we can so that I can get back on my feet as fast as I can.
Again, please don't forget the bone marrow drive to held on February 7th at Hampshire Hills in Milford, NH from 10 -2.
Bob
January 8, 2009 11:30 PM
Really quiet day today. Though I did finally get to go out to a restaurant this evening - the first time since before I went into the hospital in mid-December. It's amazing how you begin to appreciate more things in life when you have been deprived of them for a while.
So, tomorrow it's more blood tests and an infusion if it is necessary - but I don't think that will be the case. So it should be a quick day at the clinic. However, getting there at 7:30 means getting up at 5 AM. I don't know how people do that every day - it's the middle of the night!
Gotta go get my beauty sleep!
Bob
So, tomorrow it's more blood tests and an infusion if it is necessary - but I don't think that will be the case. So it should be a quick day at the clinic. However, getting there at 7:30 means getting up at 5 AM. I don't know how people do that every day - it's the middle of the night!
Gotta go get my beauty sleep!
Bob
January 7, 2009 10:15 PM
Well, I took hunkering down to its ultimate today - just stayed in pajamas and a robe all day while the snow gently fell outside and the condo staff diligently worked to clean us out. Oh the joys of not having to go to work!
Things are certainly advancing with the transplant preparations. Today we received an e-mail detailing the events ofor the next few weeks. Two more tests will be done on the 16th - a MUGA scan and an EKG. I didn't know what my MUGA was - so I looked it up. It involves injecting a radioactive marker into your bloodstream and looking at how well your heart works. It supposedly provides a movie-like image of the beating heart, and allows the doctor to determine the health of the heart’s major pumping chambers. The advantages of MUGA is that it is more accurate than an echocardiogram and it is non-invasive. I am sure everyone knows what an EKG is.
The following week - on Wednesday - is a bunch of consultations with a number of people - all revolving around the transplant process. The week concludes with the always pleasant bone marrow biopsy - a highlight in my life!
But still no word as to whether or not we have a donor or when the transplant will occur. I assume things are proceding apace since they have developed the comprehensive schedule for the next few weeks.
Not much else for the day but it turned out to be more eventful than I thought it would be - what with the schedule being forwarded.
Lastly, I have to mention that the original bone marrow drive scheduled for December 13th has been officially changed to February 7th - still at Hampshire Hills in Milford, NH and still from 10 AM to 2 PM. I have no idea if I can be there that day or not. Please make an effort to attend. Only a swab is taken so the procedure is painless and you may be saving someone's life - no greater gift can you give!
Bob
Things are certainly advancing with the transplant preparations. Today we received an e-mail detailing the events ofor the next few weeks. Two more tests will be done on the 16th - a MUGA scan and an EKG. I didn't know what my MUGA was - so I looked it up. It involves injecting a radioactive marker into your bloodstream and looking at how well your heart works. It supposedly provides a movie-like image of the beating heart, and allows the doctor to determine the health of the heart’s major pumping chambers. The advantages of MUGA is that it is more accurate than an echocardiogram and it is non-invasive. I am sure everyone knows what an EKG is.
The following week - on Wednesday - is a bunch of consultations with a number of people - all revolving around the transplant process. The week concludes with the always pleasant bone marrow biopsy - a highlight in my life!
But still no word as to whether or not we have a donor or when the transplant will occur. I assume things are proceding apace since they have developed the comprehensive schedule for the next few weeks.
Not much else for the day but it turned out to be more eventful than I thought it would be - what with the schedule being forwarded.
Lastly, I have to mention that the original bone marrow drive scheduled for December 13th has been officially changed to February 7th - still at Hampshire Hills in Milford, NH and still from 10 AM to 2 PM. I have no idea if I can be there that day or not. Please make an effort to attend. Only a swab is taken so the procedure is painless and you may be saving someone's life - no greater gift can you give!
Bob
January 6,2009 10:50 PM
Back to quiet mode again as I wait to go to the clinic on Friday. Though we did have company today which, as always, is much appreciated, breaks up the day, and allows us to touch base once again with friends.
With tomorrow's snowstorm, I'm glad that we can just hunker down and ride it out without having to worry about going out in it. One of the several "benefits" of having this disease!
I did forget to mention yeaterday that the doctor told me that my counts were high enough that I could start to brush my teeth again. We don't appreciate the small things in life until we are deprived of them and I must say that it felt really good to actually run a toothbrush covered with toothpaste over my teeth. My dentist generously gave me an electric toothbrush which I think I will begin to use next week after I ascertain that a regular toothbrush does not cause any problems.
Likewise, come Thursday, I will shave once again. I have not shaved for 3 weeks and the mini-stubble that I have is getting just a bit too long. However, with low counts, shaving is a big no-no. With my counts rising, it becomes less of a concern. When I'll need to shave again, Lord only knows! Thats another of the "benefits" of this disease.
I have to admit that having peach fuzz for hair is really convenient. Hair care drops to zero - especially since it does not seem to be growing back yet as well. Ah! A third "benefit"! Maybe I shouldn't be complaining so much now that my life seems to be so "easy"!
Speaking of my daily living, I received a call from the insurance company yesterday that pays my disability insurance. The wanted to know what my average day was like, what kind of care I needed, what my need for hospital care was, what was my projected course of treatment, etc. I am not quite so sure what the reason was for the phone call. They certainly know what I suffer from and to appear to question that if I am not in the hospital that I should be able to go to work is a little bit of a stretch here! Years ago, someone from an insurance company told me that the only person who stands between me and being independently wealthy is the claims adjuster! I am sure that we can all relate very well to that comment.
So, that's it for today's entry. Though it does seem strange, that for a nothing kind of a day, I was still able to conjur up something! I have no idea if it is of any interest to anyone but it certainly is an accurate description of what is going on in my life at this point. I thank you all for putting up with the mundane as well as the more salient issues that I have to deal with. <- Oooh, never end a sentence with a preposition!
I guess that I don't suffer from "writer's block". If I did, could I get disability insurance for that as well?
Bob
With tomorrow's snowstorm, I'm glad that we can just hunker down and ride it out without having to worry about going out in it. One of the several "benefits" of having this disease!
I did forget to mention yeaterday that the doctor told me that my counts were high enough that I could start to brush my teeth again. We don't appreciate the small things in life until we are deprived of them and I must say that it felt really good to actually run a toothbrush covered with toothpaste over my teeth. My dentist generously gave me an electric toothbrush which I think I will begin to use next week after I ascertain that a regular toothbrush does not cause any problems.
Likewise, come Thursday, I will shave once again. I have not shaved for 3 weeks and the mini-stubble that I have is getting just a bit too long. However, with low counts, shaving is a big no-no. With my counts rising, it becomes less of a concern. When I'll need to shave again, Lord only knows! Thats another of the "benefits" of this disease.
I have to admit that having peach fuzz for hair is really convenient. Hair care drops to zero - especially since it does not seem to be growing back yet as well. Ah! A third "benefit"! Maybe I shouldn't be complaining so much now that my life seems to be so "easy"!
Speaking of my daily living, I received a call from the insurance company yesterday that pays my disability insurance. The wanted to know what my average day was like, what kind of care I needed, what my need for hospital care was, what was my projected course of treatment, etc. I am not quite so sure what the reason was for the phone call. They certainly know what I suffer from and to appear to question that if I am not in the hospital that I should be able to go to work is a little bit of a stretch here! Years ago, someone from an insurance company told me that the only person who stands between me and being independently wealthy is the claims adjuster! I am sure that we can all relate very well to that comment.
So, that's it for today's entry. Though it does seem strange, that for a nothing kind of a day, I was still able to conjur up something! I have no idea if it is of any interest to anyone but it certainly is an accurate description of what is going on in my life at this point. I thank you all for putting up with the mundane as well as the more salient issues that I have to deal with. <- Oooh, never end a sentence with a preposition!
I guess that I don't suffer from "writer's block". If I did, could I get disability insurance for that as well?
Bob
January 5, 2009 11:30 PM
It was a good day today. My blood counts showed, indeed, that they were on the rise again and I did not need anything. So normalcy looks like it's just around the corner.
I finally got to have a session this morning with the doctor who originally diagnosed my disease. When I described to her how well I had been able to handle the chemotherapy in both my rounds, she shared that that only happens to about 1 out of 10 people. So I guess that I was fortunate enough to really be able to defy the odds here. Having spoken to a number of people who had dealt with all kinds of side effects from chemo, I knew that my situation was certainly not the norm. But I never thought that it was as rare as it was. Now if this ability to defy the odds could only carry over to the lottery - I would have it made!!!!
Seriously, though, your thoughts and prayers helped greatly to ease me through the process and I am greatly appreciative.
Bob
I finally got to have a session this morning with the doctor who originally diagnosed my disease. When I described to her how well I had been able to handle the chemotherapy in both my rounds, she shared that that only happens to about 1 out of 10 people. So I guess that I was fortunate enough to really be able to defy the odds here. Having spoken to a number of people who had dealt with all kinds of side effects from chemo, I knew that my situation was certainly not the norm. But I never thought that it was as rare as it was. Now if this ability to defy the odds could only carry over to the lottery - I would have it made!!!!
Seriously, though, your thoughts and prayers helped greatly to ease me through the process and I am greatly appreciative.
Bob
January 4, 2009 11:55 PM
It has only been 2 months to the day since I was first admitted to the hospital. In many ways, however, it seems like an eternity since so many things have happened since then. Things that have been so foreign to anything that I have ever experienced or ever thought that I would experience. And, for sure, things that I hope and pray none of you have to experience.
It does seem a shame that when I go to the clinic (especially the Dana-Farber clinic) that there are so many people who have suffered or are still suffering from some form of cancer. However, the upside is that everyone you meet there is so positive, upbeat, and encouraging - the other patients, the doctors, the administrative staff, and the nursing staff - that they make you feel as though what you are suffering from is something that just happens to people and that there is nothing to worry about. It helps tremendously because you know that you are far from alone in undergoing your own personal battle.
But, tomorrow I go off to our local clinic here in Manchester. I am very curious to see what my counts are as I am sure that I am on the rise again and I am looking forward to being able to go out again to a movie, maybe visit someone else, or whatever. As I said before, house arrest is better than the hospital but it can still get to you.
The other thing that I have to say after these 2 months is that my wife has been the bedrock of my existence. I don't wish to read up on my disease or my chances because all the information is so clinical and certainly not encouraging. She, however, does, and passes on to me whatever is pertinent to my situation sparing me the gory details of what I don't need to know. Likewise, she has been at my side from the beginning of all this - everyday at the hospital in Boston, driving me to the clinics each time, staying with me at home, seeing that my various needs are met, etc. She is the one who has really been at the forefront in this battle and deserves much of the credit as to how well I have done and continue to do. To some extent, I am just the lowly foot soldier following orders from the doctors and nurses with only one goal in mind - and that is,obviously, to get well. But life goes on regardless of my condition and someone has to live it and face it and my wife does that. And, as we all know, life can be very demanding and my wife faithfully handles all of that as well as looking after my needs as well. It can sometimes be a daunting task that few of us would like to tackle.
We get married "in sickness and in health" never thinking that we'd actually have to live up to those words. My wife has, however, brought those words to life every day. I thank God that she is there at my side.
Bob
It does seem a shame that when I go to the clinic (especially the Dana-Farber clinic) that there are so many people who have suffered or are still suffering from some form of cancer. However, the upside is that everyone you meet there is so positive, upbeat, and encouraging - the other patients, the doctors, the administrative staff, and the nursing staff - that they make you feel as though what you are suffering from is something that just happens to people and that there is nothing to worry about. It helps tremendously because you know that you are far from alone in undergoing your own personal battle.
But, tomorrow I go off to our local clinic here in Manchester. I am very curious to see what my counts are as I am sure that I am on the rise again and I am looking forward to being able to go out again to a movie, maybe visit someone else, or whatever. As I said before, house arrest is better than the hospital but it can still get to you.
The other thing that I have to say after these 2 months is that my wife has been the bedrock of my existence. I don't wish to read up on my disease or my chances because all the information is so clinical and certainly not encouraging. She, however, does, and passes on to me whatever is pertinent to my situation sparing me the gory details of what I don't need to know. Likewise, she has been at my side from the beginning of all this - everyday at the hospital in Boston, driving me to the clinics each time, staying with me at home, seeing that my various needs are met, etc. She is the one who has really been at the forefront in this battle and deserves much of the credit as to how well I have done and continue to do. To some extent, I am just the lowly foot soldier following orders from the doctors and nurses with only one goal in mind - and that is,obviously, to get well. But life goes on regardless of my condition and someone has to live it and face it and my wife does that. And, as we all know, life can be very demanding and my wife faithfully handles all of that as well as looking after my needs as well. It can sometimes be a daunting task that few of us would like to tackle.
We get married "in sickness and in health" never thinking that we'd actually have to live up to those words. My wife has, however, brought those words to life every day. I thank God that she is there at my side.
Bob
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