Well, I finally did it and added my self portrait to the blog. It really is a self portrait as I held the camera at arms length and snapped the shot. Well, actually a bunch of shots until I got one that I kinda liked and only required a minimum of Photoshop effort to make it look good! I got myself to looking somewhat like Fabio with Photoshop but then I decided to ratchet it back a couple of notches. I look good but I don't look that good!
For some of you, you have already seen the new me. For the rest of you, the major difference is that my hair is now of the buzz cut variety and I now have those new glasses that I spoke of a while back. I will probably keep the buzz cut as it is so convenient. Certainly for the foreseeable future. Some say that the new look makes me look younger. At this point in my life that matters little to me - ease of maintenance is much more important! So now all of you will be able to recognize me the next time that you see me.
Today, in southern New Hampshire, the weather was very Springlike and I had the opportunity to get out and walk around the neighborhood. I did the usual walk that we used to do when we had our dog and there were no problems. It was obvious to me, however, that I do need to build up the strength in my legs somewhat. But there will be plenty of time for that as the weather improves and I can get out more often.
Well, I gotta go and turn all my clocks ahead. What a pain in the butt...
Bob
March 6, 2009 11:20 PM 83 days to go
The countdown continues for me. But today it ended for the coworker that I told you last week had only a week to live. It is rather ironic that he has passed away the day before we turn the clocks ahead. For all the years that I knew him, he hated turning the clock ahead because he always felt that we lost that hour and we never got it back. We had many discussions about this. And, even though we turn the clocks back in the fall to get the hour back, he could never bring himself to the point of accepting that all it evened out in the end.
My condolences and prayers go out to his wife and son. He was a quiet man - but a good man and a good worker. He will be missed by all who knew him. I know that he was suffering and in great pain near the end. Bruce, may you now rest in peace.
This is one of the most frustrating parts of my recovery period. I cannot go out to directly pay my respects to him and to offer my sympathies to his family.
As for me, it was another quiet day and I still feel fine. It now seems that more people are beginning to question whether or not I am really ill. All I can say is that I've gone through an awful lot of treatment to pull off this sham. What I have gained by undergoing all of this, I have yet to determine.
In fact, there are a few other small side effects that I have to contend with during this recovery period. As my close friends know(I do have some!), I have never really been a coffee lover. But, I always craved that first, and usually for me the only one of the day, cup of coffee in the morning. That craving has now completely gone away and I really have no desire for coffee at all. I had a cup or 2 when we would go out for breakfast just before my last hospital stay. But I have not had any since I went in on February 11th. This is a direct byproduct of the chemotherapy as I know that others have lost their taste for coffee as well.
One other side effect that I currently have is that all day long I have a taste in my mouth that I cannot get rid of. It's not like losing your sense of taste due to the chemotherapy because it does not affect my appetite or the taste of the food that I am eating. I think that it is caused by all the medications that I am taking and, hopefully, it will go away as I gradually wean myself off of them. I say this because I do not remember having this taste after each of the 2 rounds of chemo that I went through. There does not seem to be any way of ridding myself of this as, no matter what I eat or what I try to cleanse my mouth with, the taste always comes back. It's not overly unpleasant, but it is definitely there.
I also had a New York friend call today to touch base and start to make plans for them to come up and visit after the 100 days are over. Looking forward to these type of things is what's going to fuel my drive back to full health once again.
So that's all that I have to comment on for today...
Bob
My condolences and prayers go out to his wife and son. He was a quiet man - but a good man and a good worker. He will be missed by all who knew him. I know that he was suffering and in great pain near the end. Bruce, may you now rest in peace.
This is one of the most frustrating parts of my recovery period. I cannot go out to directly pay my respects to him and to offer my sympathies to his family.
As for me, it was another quiet day and I still feel fine. It now seems that more people are beginning to question whether or not I am really ill. All I can say is that I've gone through an awful lot of treatment to pull off this sham. What I have gained by undergoing all of this, I have yet to determine.
In fact, there are a few other small side effects that I have to contend with during this recovery period. As my close friends know(I do have some!), I have never really been a coffee lover. But, I always craved that first, and usually for me the only one of the day, cup of coffee in the morning. That craving has now completely gone away and I really have no desire for coffee at all. I had a cup or 2 when we would go out for breakfast just before my last hospital stay. But I have not had any since I went in on February 11th. This is a direct byproduct of the chemotherapy as I know that others have lost their taste for coffee as well.
One other side effect that I currently have is that all day long I have a taste in my mouth that I cannot get rid of. It's not like losing your sense of taste due to the chemotherapy because it does not affect my appetite or the taste of the food that I am eating. I think that it is caused by all the medications that I am taking and, hopefully, it will go away as I gradually wean myself off of them. I say this because I do not remember having this taste after each of the 2 rounds of chemo that I went through. There does not seem to be any way of ridding myself of this as, no matter what I eat or what I try to cleanse my mouth with, the taste always comes back. It's not overly unpleasant, but it is definitely there.
I also had a New York friend call today to touch base and start to make plans for them to come up and visit after the 100 days are over. Looking forward to these type of things is what's going to fuel my drive back to full health once again.
So that's all that I have to comment on for today...
Bob
March 5, 2009 11:55 PM 84 days to go
We are now in what I'll call potato mode. Since I only go to the clinic on Wednesdays, that day obviously generates the most noteworthy medical updates and really is the meat of what I have to say to you. So it kind of "boils down" to 1 day of meat and 6 days of potato(e)s (where's Dan Quayle when you need him?).
But I can still report on other "major" events that do occur...
For example, today, I had my wife buzz cut my hair as it was growing at all different rates and she was saying that I looked like a puff ball and a Chia pet. This is the first time that my hair has been trimmed since November 3rd but I would not recommend chemotherapy as a way to avoid having to get your hair cut.
Also, now that my counts are coming back, I can actually brush my teeth again. So, today, was the first day that I have done that since February 10th and it does feel good to have your teeth nice and smooth again. Now don't get the idea that my mouth must be some kind of skeevy mess at this point - other oral healthcare products have kept my mouth in excellent shape. In fact, they are surprised at Dana-Farber that I have never had mouth sores as they are one of the most common side effects of chemotherapy even if you do the prescribed oral regimen. From what I understand, that is not a very pleasant thing to contract as it affects your appetite and tends to greatly limit what you can and want to eat.
I am going to greatly change the subject here because I have always shared what's going through my mind and there is something that has always been going through my mind from the day that I was informed of my illness. I am prompted to do this because I just emailed a friend and I shared this with her. And to be honest with you, I have gotten so wrapped up in the other things that I have written that I have been negligent to mention this.
You all obviously know that I have always been very upbeat about what is going on and with my own prognosis as to attaining a full recovery. Rest assured, those have been and still are my exact feelings. As a man of faith, I have felt the touch of God's healing hand so many times during this experience that, in my mind, there can be no other outcome for me.
But, you all have to realize that AML M5 is one of the worst types of leukemia to have. Depending upon what you may read and from what my doctor said, in simple terms, the prospects of surviving the first year are about 50-50 and only 25% after year 2. This is not an attempt to evoke anyone's sympathy, it is just a fact. From my standpoint, those are only numbers,however, and we are all individuals. So the numbers mean little to me - especially so since I have continually defied the odds up to this point.
So what has been on my mind?
Last year a fellow parishioner in my church died from leukemia. As I understand it, he had a different form of leukemia than I and it was, for whatever reason, difficult to find a donor for him requiring that they constantly try to keep him in remission via chemotherapy. Ultimately, it was not possible to do so and the disease overtook his body before the bone marrow transplant could be done - even though they finally located a donor for him. He was someone that I had the opportunity to work with at the church and it was especially hard to see him pass on - even moreso as he was a younger man than I. Obviously, I had no idea that only a few months later that I would be placed in his position. So every time I sit down here to write, I can always see his face and I always wonder why I am doing so well and he had the misfortune to not make it through.
So, maybe, just maybe, I am writing this blog for the two of us...
Bob
But I can still report on other "major" events that do occur...
For example, today, I had my wife buzz cut my hair as it was growing at all different rates and she was saying that I looked like a puff ball and a Chia pet. This is the first time that my hair has been trimmed since November 3rd but I would not recommend chemotherapy as a way to avoid having to get your hair cut.
Also, now that my counts are coming back, I can actually brush my teeth again. So, today, was the first day that I have done that since February 10th and it does feel good to have your teeth nice and smooth again. Now don't get the idea that my mouth must be some kind of skeevy mess at this point - other oral healthcare products have kept my mouth in excellent shape. In fact, they are surprised at Dana-Farber that I have never had mouth sores as they are one of the most common side effects of chemotherapy even if you do the prescribed oral regimen. From what I understand, that is not a very pleasant thing to contract as it affects your appetite and tends to greatly limit what you can and want to eat.
I am going to greatly change the subject here because I have always shared what's going through my mind and there is something that has always been going through my mind from the day that I was informed of my illness. I am prompted to do this because I just emailed a friend and I shared this with her. And to be honest with you, I have gotten so wrapped up in the other things that I have written that I have been negligent to mention this.
You all obviously know that I have always been very upbeat about what is going on and with my own prognosis as to attaining a full recovery. Rest assured, those have been and still are my exact feelings. As a man of faith, I have felt the touch of God's healing hand so many times during this experience that, in my mind, there can be no other outcome for me.
But, you all have to realize that AML M5 is one of the worst types of leukemia to have. Depending upon what you may read and from what my doctor said, in simple terms, the prospects of surviving the first year are about 50-50 and only 25% after year 2. This is not an attempt to evoke anyone's sympathy, it is just a fact. From my standpoint, those are only numbers,however, and we are all individuals. So the numbers mean little to me - especially so since I have continually defied the odds up to this point.
So what has been on my mind?
Last year a fellow parishioner in my church died from leukemia. As I understand it, he had a different form of leukemia than I and it was, for whatever reason, difficult to find a donor for him requiring that they constantly try to keep him in remission via chemotherapy. Ultimately, it was not possible to do so and the disease overtook his body before the bone marrow transplant could be done - even though they finally located a donor for him. He was someone that I had the opportunity to work with at the church and it was especially hard to see him pass on - even moreso as he was a younger man than I. Obviously, I had no idea that only a few months later that I would be placed in his position. So every time I sit down here to write, I can always see his face and I always wonder why I am doing so well and he had the misfortune to not make it through.
So, maybe, just maybe, I am writing this blog for the two of us...
Bob
March 4, 2009 11:05 PM 85 days to go
As I used to tell my children, today is the only day of the year that is a command - March 4th!
Not very funny I know, but they used to get a kick out of it!
Much more importantly, however, is the results from my visit to the clinic this morning. Everything is going exactly according to plan and - maybe even a little faster(unlike most of the projects that I used to work on). All the appropriate counts were on the rise and I did not need any any transfusions or platelets which I told you yesterday was my presumption for what would happen. All indications are that my kidneys and liver are functioning perfectly as well and my other vital signs are right on target. Therefore, as much as I hate to admit it, drinking all that water is paying off big time! However, the many bathroom breaks are a killer at night - not so bad during the day. As much as it might help, I cannot bring myself to wearing Depends to help ease the problem!
Most importantly, it was obvious from the counts that my bone marrow is now making blood cells as it is supposed to do. The only question to answered is - whose marrow is it? Mine or the donors? The implication from the nurse practitioner was that it was the donors based upon what some of the numbers were revealing. But we won't know for sure for 2 more weeks and I don't really want to get my hopes up now and be sadly disappointed later should that not be the case. However, all signs are good at this point and we can't ask for more than that!
Another medication bit the dust today so progress is being made on that front as well. I know that there are a number of them that I will need to take for the next year but they are chiefly antibiotics and vitamins. The obsoleted drug that I need longer need to take was needed to prevent any infections.
During the visit, it was reiterated that I cannot return to work for at least a year. Not that I am necessarily heartbroken about that - but I don't know as yet if that imposes other restrictions along the way that I will not find so acceptable. However, I don't think that anything can possibly be as restrictive as this 100 day period.
We were also told to go real easy on visitors for the next few weeks as well. The obvious reason is not to expose me to colds, flu, and whatnot. I must say thank you to all of those who earlier had planned to visit but were responsible enough to cancel out when you thought that you might be coming down with something. You have played an important part in my recovery by keeping me from contracting anything that could possibly cause a return hospital visit. I (and my wife) are very grateful.
So continue to keep me in your thoughts and prayers, because whatever you are doing - it's working perfectly!
I guess that's enough information for one day. But now, at least, you know as much as I do...
Bob
Not very funny I know, but they used to get a kick out of it!
Much more importantly, however, is the results from my visit to the clinic this morning. Everything is going exactly according to plan and - maybe even a little faster(unlike most of the projects that I used to work on). All the appropriate counts were on the rise and I did not need any any transfusions or platelets which I told you yesterday was my presumption for what would happen. All indications are that my kidneys and liver are functioning perfectly as well and my other vital signs are right on target. Therefore, as much as I hate to admit it, drinking all that water is paying off big time! However, the many bathroom breaks are a killer at night - not so bad during the day. As much as it might help, I cannot bring myself to wearing Depends to help ease the problem!
Most importantly, it was obvious from the counts that my bone marrow is now making blood cells as it is supposed to do. The only question to answered is - whose marrow is it? Mine or the donors? The implication from the nurse practitioner was that it was the donors based upon what some of the numbers were revealing. But we won't know for sure for 2 more weeks and I don't really want to get my hopes up now and be sadly disappointed later should that not be the case. However, all signs are good at this point and we can't ask for more than that!
Another medication bit the dust today so progress is being made on that front as well. I know that there are a number of them that I will need to take for the next year but they are chiefly antibiotics and vitamins. The obsoleted drug that I need longer need to take was needed to prevent any infections.
During the visit, it was reiterated that I cannot return to work for at least a year. Not that I am necessarily heartbroken about that - but I don't know as yet if that imposes other restrictions along the way that I will not find so acceptable. However, I don't think that anything can possibly be as restrictive as this 100 day period.
We were also told to go real easy on visitors for the next few weeks as well. The obvious reason is not to expose me to colds, flu, and whatnot. I must say thank you to all of those who earlier had planned to visit but were responsible enough to cancel out when you thought that you might be coming down with something. You have played an important part in my recovery by keeping me from contracting anything that could possibly cause a return hospital visit. I (and my wife) are very grateful.
So continue to keep me in your thoughts and prayers, because whatever you are doing - it's working perfectly!
I guess that's enough information for one day. But now, at least, you know as much as I do...
Bob
March 3, 2009 10:45 PM 86 days to go
It was a very quiet day in eager anticipation of going to the clinic bright and early tomorrow morning. I don't know how bright I'll be but it most certainly will be early as we have to get up by 5 AM to be at the clinic by 7.
The upside is that, if all goes according to my plans, we'll be out before 9:00. Of course, that all depends on those ever popular counts. As I said quite a while back, we seem not to be people - just a set of numbers. Everything that happens is based upon the numbers on the printout that we get about half an hour after my blood is drawn. That, of course, is augmented by the rest of the numbers concerning heartrate, blood pressure, etc.
Again, at this juncture, I feel fine.
Oh, bringing up an old topic, I have not yet heard anything back from my donor after sending my note almost two weeks ago. Some people wish to remain under the radar and, quite possibly, my donor is that type of person. If I hear anything, I'll let you know.
So, once again, short and sweet. But tomorrow there most definitely will be a more definitive medical report.
Until then...
Bob
The upside is that, if all goes according to my plans, we'll be out before 9:00. Of course, that all depends on those ever popular counts. As I said quite a while back, we seem not to be people - just a set of numbers. Everything that happens is based upon the numbers on the printout that we get about half an hour after my blood is drawn. That, of course, is augmented by the rest of the numbers concerning heartrate, blood pressure, etc.
Again, at this juncture, I feel fine.
Oh, bringing up an old topic, I have not yet heard anything back from my donor after sending my note almost two weeks ago. Some people wish to remain under the radar and, quite possibly, my donor is that type of person. If I hear anything, I'll let you know.
So, once again, short and sweet. But tomorrow there most definitely will be a more definitive medical report.
Until then...
Bob
March 2, 2009 10:20 PM 87 days to go
As predicted, it snowed last night and into this morning giving us about a foot. Not as much as it could have been, but certainly more than it needs to be.
So it was certainly a good day to hunker down again. We really did nothing except while away another day in eager anticipation of the coming of spring. However, the weather is hardly cooperating as it is supposed to be cold until Friday.
Everything is still running smoothly here. Of course, without the hospital to use as a frequent foil (it is such an easy target!), there are really no interesting little twists and turns or stories to share.
I am, however, looking forward to Wednesday (when we visit the clinic again), in order to see how my counts are doing so that (hopefully) we can at least open our the house to visitors. Company is always most welcome as it allows us to catch up on what is going on with our friends. Self imposed house arrest can be (can be! it is!)boring.
So another short entry for the day as it remains uneventful. Fortunately, that was so, because they did not clear us out until early afternoon. Any emergency before that and it would have been challenging indeed to get out!
As everyone says, uneventful is what we are looking for...
Bob
So it was certainly a good day to hunker down again. We really did nothing except while away another day in eager anticipation of the coming of spring. However, the weather is hardly cooperating as it is supposed to be cold until Friday.
Everything is still running smoothly here. Of course, without the hospital to use as a frequent foil (it is such an easy target!), there are really no interesting little twists and turns or stories to share.
I am, however, looking forward to Wednesday (when we visit the clinic again), in order to see how my counts are doing so that (hopefully) we can at least open our the house to visitors. Company is always most welcome as it allows us to catch up on what is going on with our friends. Self imposed house arrest can be (can be! it is!)boring.
So another short entry for the day as it remains uneventful. Fortunately, that was so, because they did not clear us out until early afternoon. Any emergency before that and it would have been challenging indeed to get out!
As everyone says, uneventful is what we are looking for...
Bob
March 1, 2009 9:30 PM 88 days to go
The days are marching on. As I said yesterday, winter won't go away and tomorrow we expect 12-18 inches of snow. Thank goodness we do not have to go out to the clinic tomorrow as we had to do last Monday. Not having to go out in it is one of the very few benefits of my illness.
I still feel fine. The lower back pain of yesterday is a thing of the past and is now all gone.
We had company today, my brother-in-law and sister-in-law visited. They brought the meal for the day which was great. My son was here as well. The five of us played cards and had a lot of fun. The banter during the game is actually more fun than the game itself.
I should mention that on Friday as we talked to one other couple in the waiting room, it came out in the conversation that they drove down to Boston from Augusta, Maine - a three hour trip! When the clinic visit was over, they were going to get in their car and drive all the way back! That's like driving to New York city from here, something that I would never think of doing. They did this once a week during the 100 days after his transplant in September. Now they "only" have to do it once a month. Everybody in the clinic has a story to tell...
It's going to be a short entry tonight because there really is not much that goes on on a Sunday.
Until tomorrow...
Bob
I still feel fine. The lower back pain of yesterday is a thing of the past and is now all gone.
We had company today, my brother-in-law and sister-in-law visited. They brought the meal for the day which was great. My son was here as well. The five of us played cards and had a lot of fun. The banter during the game is actually more fun than the game itself.
I should mention that on Friday as we talked to one other couple in the waiting room, it came out in the conversation that they drove down to Boston from Augusta, Maine - a three hour trip! When the clinic visit was over, they were going to get in their car and drive all the way back! That's like driving to New York city from here, something that I would never think of doing. They did this once a week during the 100 days after his transplant in September. Now they "only" have to do it once a month. Everybody in the clinic has a story to tell...
It's going to be a short entry tonight because there really is not much that goes on on a Sunday.
Until tomorrow...
Bob
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