35 to 40%!
That's what the doctor said a year ago when I asked her directly what my chances were to survive my leukemia. That estimate also came with a caveat - it assumed that they could locate a bone marrow donor for me! Otherwise, the percentage plunged to a very slim 5%! Nothing on Halloween could be as scary as that!
That was at the conclusion of my doctor's appointment. During the time in her office she stated that my treatment would begin with a 7 and 3 day regimen of chemotherapy. Seven days of cytarabine(24 hours a day) with the first three days including an injection of doxorubicine as well. Then we would wait for 7 days to have a bone marrow biopsy and, depending upon the results, the following would happen - if the leukemia were still present, I would immediately begin a 5 and 2 day regimen of chemo consisting of the same 2 drugs and stay in the hospital another month, if no leukemia was found, I would stay in the hospital about another 2 weeks until my counts returned to normal. After that, everything depended upon finding a bone marrow donor. So the remainder of the schedule was somewhat up in the air.
So, I was looking forward to a minimum of a month in the hospital. Since I was "feeling fine", the doctor said that I could go home and enjoy the weekend and look to enter the hospital on Monday or Tuesday. I was kind of surprised by how fast they were moving but the doctor said that in a very few weeks I wouldn't be "feeling fine". There was certainly nothing to be gained by waiting - that's for sure!
I did ask why it was necessary to go through all this if a blood transfusion would appear to bring me back to "good health" and she said that that was only a temporary fix. In the long term, blood transfusions would not achieve that goal as the affects of the disease grew worse. Since I didn't need to enter the hospital for a few days, I could kind of put everything aside and continue on with my life "as usual". And, that is what I did.
We had plans for Saturday night(a night with friends) which we kept and we went to church on Sunday. It would be my last Sunday for over a year. When I go back is still up in the air.
So, a year ago my weekend was like that song "Pack up your troubles in your old kit bag and smile, smile, smile...."
Bob
October 30, 2009 10:30 PM
Saying goodbyes!
As the yearly anniversaries now begin to occur almost daily, it was a year ago that I went to the office for the last time to say my goodbyes and give my fellow employees the opportunity to wish me well.
As I think back on that day, I recall that, truthfully, I was in a kind of a fog. I had a doctor's appointment the next day at Dana-Farber but I had no idea what my schedule would be for entering the hospital or how the treatment process was handled. I only knew that chemo-therapy was the next step and, like most of you, I only knew it to be a pretty rugged road to travel - to the point that, sometimes, you never even reach the end of the road! Now, when I look back on it - I was such a novice. I knew nothing about what was going to happen to me!
The people at work were very kind, upbeat, and positive. Those that had first or second hand leukemia stories told me the positive ones and how things worked out so well for the cancer victims. They wished me well and continued to do so by periodically sending me cards over the months since that time.
Of course, none of us knew if that would be the last goodbye or not. As it turns out, it was a last goodbye for a number of us as layoffs have trimmed the staff way down. Thankfully it was not a last goodbye on my part.
In my ignorance, I passed on what I knew about the my proposed recovery timeframe which was estimated to be the beginning of May! That was quickly corrected the next day when my Dana-Farber doctor said that a bone marrow transplant took you out of commission for a whole year from the date of the transplant! However, that presumes that a bone marrow transplant takes place and that is not a given even though it is part of the desired treatment regimen - they have to locate a compatible donor! Could one be found for me?
So, I left the office after a few hours and came home to await going to Dana-Farber for the first time the next day. Now it seems like a home away from home for us. We know so many of the staff and, everytime we visit, we swap stories of the things going on in our lives. But at that point I only knew that I, for the first time, would be getting the detailed plan of attack on how they intended to tackle my disease.
Needless to say I was very nervous. But it was now in God's hands. There was nothing that I could personally do to change the situation. Phone calls kept coming in from friends and acquaintances and that tenede to fill up the rest of the day.
With nothing else to do, I set myself to enjoying (probably not the right word!) the remaining days (hours?) until I was admitted to the hospital...
Bob
As the yearly anniversaries now begin to occur almost daily, it was a year ago that I went to the office for the last time to say my goodbyes and give my fellow employees the opportunity to wish me well.
As I think back on that day, I recall that, truthfully, I was in a kind of a fog. I had a doctor's appointment the next day at Dana-Farber but I had no idea what my schedule would be for entering the hospital or how the treatment process was handled. I only knew that chemo-therapy was the next step and, like most of you, I only knew it to be a pretty rugged road to travel - to the point that, sometimes, you never even reach the end of the road! Now, when I look back on it - I was such a novice. I knew nothing about what was going to happen to me!
The people at work were very kind, upbeat, and positive. Those that had first or second hand leukemia stories told me the positive ones and how things worked out so well for the cancer victims. They wished me well and continued to do so by periodically sending me cards over the months since that time.
Of course, none of us knew if that would be the last goodbye or not. As it turns out, it was a last goodbye for a number of us as layoffs have trimmed the staff way down. Thankfully it was not a last goodbye on my part.
In my ignorance, I passed on what I knew about the my proposed recovery timeframe which was estimated to be the beginning of May! That was quickly corrected the next day when my Dana-Farber doctor said that a bone marrow transplant took you out of commission for a whole year from the date of the transplant! However, that presumes that a bone marrow transplant takes place and that is not a given even though it is part of the desired treatment regimen - they have to locate a compatible donor! Could one be found for me?
So, I left the office after a few hours and came home to await going to Dana-Farber for the first time the next day. Now it seems like a home away from home for us. We know so many of the staff and, everytime we visit, we swap stories of the things going on in our lives. But at that point I only knew that I, for the first time, would be getting the detailed plan of attack on how they intended to tackle my disease.
Needless to say I was very nervous. But it was now in God's hands. There was nothing that I could personally do to change the situation. Phone calls kept coming in from friends and acquaintances and that tenede to fill up the rest of the day.
With nothing else to do, I set myself to enjoying (probably not the right word!) the remaining days (hours?) until I was admitted to the hospital...
Bob
October 29, 2009 10:50 PM
Leukemia!
One year ago today I was given that diagnosis by my doctor who was surprised by it as much as we were. On the way to the doctor's office I said to my wife that it couldn't be that bad because a simple blood transfusion would get me back on my feet again. How prescient of me!!!
With a disease like this, they waste no time. They asked if I wished to go to Dartmouth-Hitchcock in Hanover, New Hampshire or Dana-Farber in Boston. We chose Boston for a number of reasons and it is a decision that we have never regretted. Having made the choice, an appointment was set up for Friday(2 days away). The doctor then layed out the probable course for my treatment.
She also asked if we wanted any counseling - which we declined. There was no point in feeling sorry for myself or asking why me? We were now in the hands of God and the doctors and that's what really mattered. I would follow their lead.
I came home and telephoned my boss with the news and we agreed that I would go into work the next day for a while to say my goodbyes - whether permanent or for some period of time we did not know!
Of course, I had to begin calling family members and friends with the news.
The rest of my world was now becoming aware...
Bob
One year ago today I was given that diagnosis by my doctor who was surprised by it as much as we were. On the way to the doctor's office I said to my wife that it couldn't be that bad because a simple blood transfusion would get me back on my feet again. How prescient of me!!!
With a disease like this, they waste no time. They asked if I wished to go to Dartmouth-Hitchcock in Hanover, New Hampshire or Dana-Farber in Boston. We chose Boston for a number of reasons and it is a decision that we have never regretted. Having made the choice, an appointment was set up for Friday(2 days away). The doctor then layed out the probable course for my treatment.
She also asked if we wanted any counseling - which we declined. There was no point in feeling sorry for myself or asking why me? We were now in the hands of God and the doctors and that's what really mattered. I would follow their lead.
I came home and telephoned my boss with the news and we agreed that I would go into work the next day for a while to say my goodbyes - whether permanent or for some period of time we did not know!
Of course, I had to begin calling family members and friends with the news.
The rest of my world was now becoming aware...
Bob
October 28, 2009 10:30 PM
Ahead of the curve!
That was the doctor's concise words to describe where I stand today.
My visit to the clinic today went exactly as I had hoped. I am now off all immuno-suppressants and the accompanying Lipitor that I needed to fend of the rise in cholesterol caused by the Rapamune. I am now officially off the wagon as well. I can have alcohol and, in fact, I had a glass of wine tonight for the first time in almost nine months. I most certainly did not want to overdo it - so one glass was more tha enough for now.
When asked, however, the doctor said that I COULD NOT GET A TATTOO! What a major disappointment that was!!!!!
My hemoglobin has now crept up to 12 - the highest it has ever been. Thirteen is normal - so I am almost there. As for my immune system, one particular number that he looked for was in the 500 range which he said was perfectly normal. Oftentimes, at this juncture, patients are in the 100 range.
But I did get some disappointing news. We visited friends from our church today for lunch and they told me that someone else in the church has been diagnosed with leukemia. Knowing this wonderfully kind lady, I am really bummed to hear the news. This is the 4th person to be so diagnosed in the past 2+ years. What is happening?
Another step forward and my miracle run continues...
Bob
That was the doctor's concise words to describe where I stand today.
My visit to the clinic today went exactly as I had hoped. I am now off all immuno-suppressants and the accompanying Lipitor that I needed to fend of the rise in cholesterol caused by the Rapamune. I am now officially off the wagon as well. I can have alcohol and, in fact, I had a glass of wine tonight for the first time in almost nine months. I most certainly did not want to overdo it - so one glass was more tha enough for now.
When asked, however, the doctor said that I COULD NOT GET A TATTOO! What a major disappointment that was!!!!!
My hemoglobin has now crept up to 12 - the highest it has ever been. Thirteen is normal - so I am almost there. As for my immune system, one particular number that he looked for was in the 500 range which he said was perfectly normal. Oftentimes, at this juncture, patients are in the 100 range.
But I did get some disappointing news. We visited friends from our church today for lunch and they told me that someone else in the church has been diagnosed with leukemia. Knowing this wonderfully kind lady, I am really bummed to hear the news. This is the 4th person to be so diagnosed in the past 2+ years. What is happening?
Another step forward and my miracle run continues...
Bob
October 27, 2009 10:45 PM
Up in the morning!
Yup! It's that time again - the last Wednesday of the month and our monthly trip to the doctor's office. So it's up at 5 AM to beat the traffic and to beat the crowd at the clinic. I fully expect no surprises and look forward to being taken off the immuno-suppressants for good.
We went to a friend's house for dinner tonight and had a great time. In fact, we just got home.
As I said yesterday, our deacon was here this morning for a quick visit as her day was really busy since it was her last full day before leaving for Illinois. Of course, we had communion and wished each other well as we will not being seeing each other for quite a while as she is headed to Florida after her Illinois visit to spend the winter there.
Such luxuries are denied to me at present as I must still remain somewhat under house arrest. With all the flu and illness that's going around, I really cannot risk crowds and the very real possibility of coming down with something. I'll have to ask the doctor how fast(or slow) my immune system will recover now that I am off of any medication.
So tomorrow promises to be a real newsworthy day...
Bob
Yup! It's that time again - the last Wednesday of the month and our monthly trip to the doctor's office. So it's up at 5 AM to beat the traffic and to beat the crowd at the clinic. I fully expect no surprises and look forward to being taken off the immuno-suppressants for good.
We went to a friend's house for dinner tonight and had a great time. In fact, we just got home.
As I said yesterday, our deacon was here this morning for a quick visit as her day was really busy since it was her last full day before leaving for Illinois. Of course, we had communion and wished each other well as we will not being seeing each other for quite a while as she is headed to Florida after her Illinois visit to spend the winter there.
Such luxuries are denied to me at present as I must still remain somewhat under house arrest. With all the flu and illness that's going around, I really cannot risk crowds and the very real possibility of coming down with something. I'll have to ask the doctor how fast(or slow) my immune system will recover now that I am off of any medication.
So tomorrow promises to be a real newsworthy day...
Bob
October 26, 2009 10:45 PM
Counting down to zero!
Only one more day left for my last remaining immuno-suppressant. It's hard to believe but my medications will be cut down to almost nothing - and certainly not anything of consequence! And, it's hard to believe that my immuno-suppressants will be done in eight and a half months when the doctor stated up front that they strived to accomplish this in twelve months! I'm hoping that now that the immuno-suppressants are gone, I'll be able to have an occassional glass of wine or a drink once in a while. I'm no alcoholic(I haven't had a drink for almost nine months!), but I did enjoy that glass of wine whenever I had it.
Otherwise, I continued working on my basement as my daily activity. Tomorrow, our deacon visits in the morning and we visit friends for the evening so it will be a full day. Wednesday, we make our trip to the clinic for 7 AM and then we visit friends for lunch. So, another somewhat full day.
This time last year we were still awaiting the results of the bone marrow biopsy. Kind of looking forward to a Tuesday meeting with the doctor...
Bob
Only one more day left for my last remaining immuno-suppressant. It's hard to believe but my medications will be cut down to almost nothing - and certainly not anything of consequence! And, it's hard to believe that my immuno-suppressants will be done in eight and a half months when the doctor stated up front that they strived to accomplish this in twelve months! I'm hoping that now that the immuno-suppressants are gone, I'll be able to have an occassional glass of wine or a drink once in a while. I'm no alcoholic(I haven't had a drink for almost nine months!), but I did enjoy that glass of wine whenever I had it.
Otherwise, I continued working on my basement as my daily activity. Tomorrow, our deacon visits in the morning and we visit friends for the evening so it will be a full day. Wednesday, we make our trip to the clinic for 7 AM and then we visit friends for lunch. So, another somewhat full day.
This time last year we were still awaiting the results of the bone marrow biopsy. Kind of looking forward to a Tuesday meeting with the doctor...
Bob
October 25, 2009 10:45 PM
Building up an appetite!
That's what one of my friends noticed about me today as I was wolfing down hor d'oeuvres before we had dinner. I suppose that it's true as I have slowly been putting on weight over the past two months. I guess that the immuno-suppressants might have been one of the culprits that kept me from enjoying food. But, as I have been slowly weaned off of them over the past 6 months my appetite has seemed to have returned.
Other than having our friends for dinner, it was a very quiet day and a far cry from a year ago when we were all wondering what was wrong with me. It's a lot better to just sit back, relax, and enjoy life - even if it is somewhat of a sheltered one at this point in time.
You read in the newspaper about all the illness that is inflicting the local school districts and you realize how important it is to remain isolated from society at this point in time. In fact, one of my granddaughters currently has strep throat.
So, we have to be verrrry carefulllll...
Bob
That's what one of my friends noticed about me today as I was wolfing down hor d'oeuvres before we had dinner. I suppose that it's true as I have slowly been putting on weight over the past two months. I guess that the immuno-suppressants might have been one of the culprits that kept me from enjoying food. But, as I have been slowly weaned off of them over the past 6 months my appetite has seemed to have returned.
Other than having our friends for dinner, it was a very quiet day and a far cry from a year ago when we were all wondering what was wrong with me. It's a lot better to just sit back, relax, and enjoy life - even if it is somewhat of a sheltered one at this point in time.
You read in the newspaper about all the illness that is inflicting the local school districts and you realize how important it is to remain isolated from society at this point in time. In fact, one of my granddaughters currently has strep throat.
So, we have to be verrrry carefulllll...
Bob
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