3 down – 2 to go!
A really uneventful day. My wife did manage to visit today and arrived around noon time. It lightly snowed here all day and they are saying that it will start again in earnest in the early morning which will most likely prevent her from coming here tomorrow. However, the weather for Monday is projected to be good so I should get to go home as planned.
My counts are still fine and I still feel fine. So basically, my activity has been nothing but finding ways to occupy the daytime hours. And this is compounded by the fact that hospital life on the weekends is very quiet.
So I am about to watch the Dallas-Baltimore football game tonight. Hopefully the result is more to the Patriot’s favor than Thursday night’s game. Go Dallas!
Bob
December 19, 2008 7:45
2 down – 3 to go!!
It was an uneventful day – just the way that I want it! For the first time my wife did not come to the hospital but that was understandable with the bad weather that had been forecast and the snow that we already have on the ground. I just spoke to her on the phone and there is about 6” on the ground and it’s supposed to snow until midnight.
I have a new room mate - a man who was in ICU. News break! They are moving him again! They say that because of his state of health, he needs a private room. This just adds to my observation since I’ve been here. I happen to sit right by the door to the room and I watch patients walk by during the day and I observe their condition and I say to myself, “These people are sick – so why am I here?” I am still feeling fine – suffering no side effects from the chemo.
So after commenting on the midnight vitals visit Wednesday night, I got the nurse to agree to have them come in at 10:00. And sure enough at 10:00 someone came in to take my vitals. And sure enough…..someone came in at midnight to take my vitals as well. I guess that I have to be more specific!
Bob
It was an uneventful day – just the way that I want it! For the first time my wife did not come to the hospital but that was understandable with the bad weather that had been forecast and the snow that we already have on the ground. I just spoke to her on the phone and there is about 6” on the ground and it’s supposed to snow until midnight.
I have a new room mate - a man who was in ICU. News break! They are moving him again! They say that because of his state of health, he needs a private room. This just adds to my observation since I’ve been here. I happen to sit right by the door to the room and I watch patients walk by during the day and I observe their condition and I say to myself, “These people are sick – so why am I here?” I am still feeling fine – suffering no side effects from the chemo.
So after commenting on the midnight vitals visit Wednesday night, I got the nurse to agree to have them come in at 10:00. And sure enough at 10:00 someone came in to take my vitals. And sure enough…..someone came in at midnight to take my vitals as well. I guess that I have to be more specific!
Bob
December 18, 8:00 PM
Well, 1 down and 4 to go – but who’s keeping score!
As I said in yesterday’s entry, I share a room. This, I find, is not always the best of ideas. This morning his whole family gathered around his bed to have a 10:00 meeting with his doctor. The essence of the meeting was how best to send him home so that he could peaceably live out the last months of his life. To his credit, he maintains an upbeat attitude and, to their credit, his family was also bearing up very well. But, I have to admit, it was not something that I wished to be so intimately involved in.
This floor does not run on as rigid a schedule as my last floor. Upstairs they do vitals at 2, 6, & 10 skipping the 2 AM time. Down here the times are random and you have no idea when it will be done. So saying, the woke me up 3 times from a sound sleep at midnight, 5:15 AM, and 7:15 AM to take my vitals and to try to draw blood. I say try because the 7:15 wake up was to do precisely that when it had already been done at 5:15. I wish that they could get their act together.
This morning, one of the nurse assistants commented that she remembered me from my first room up in 6D pod. When I responded that it must have been my good looks that she recalled. She immediately, replied, “No, that’s not it!” I just have to think that she was lying to me!
Nothing eventful today. I am just marking time until I can go home on Monday. The nurse told me that they have already started drafting the discharge papers so I am hoping that the process goes a lot faster this time and that Monday afternoon is a reality – not Monday night.
With the weather prediction of a major snowstorm tomorrow – I am going to be hard pressed to find something edible in the food department because my wife will definitely not be driving to Boston in the storm. Today, I dined on delicacies from Au Bon Pain once again – what a delight! I’m going to have to get creative tomorrow or fall back on good old PB&J which is always a safe bet!
So far round 2 of chemo has gone as well as round 1 and I am thankful for your prayers that are helping to keep it so.
Bob
As I said in yesterday’s entry, I share a room. This, I find, is not always the best of ideas. This morning his whole family gathered around his bed to have a 10:00 meeting with his doctor. The essence of the meeting was how best to send him home so that he could peaceably live out the last months of his life. To his credit, he maintains an upbeat attitude and, to their credit, his family was also bearing up very well. But, I have to admit, it was not something that I wished to be so intimately involved in.
This floor does not run on as rigid a schedule as my last floor. Upstairs they do vitals at 2, 6, & 10 skipping the 2 AM time. Down here the times are random and you have no idea when it will be done. So saying, the woke me up 3 times from a sound sleep at midnight, 5:15 AM, and 7:15 AM to take my vitals and to try to draw blood. I say try because the 7:15 wake up was to do precisely that when it had already been done at 5:15. I wish that they could get their act together.
This morning, one of the nurse assistants commented that she remembered me from my first room up in 6D pod. When I responded that it must have been my good looks that she recalled. She immediately, replied, “No, that’s not it!” I just have to think that she was lying to me!
Nothing eventful today. I am just marking time until I can go home on Monday. The nurse told me that they have already started drafting the discharge papers so I am hoping that the process goes a lot faster this time and that Monday afternoon is a reality – not Monday night.
With the weather prediction of a major snowstorm tomorrow – I am going to be hard pressed to find something edible in the food department because my wife will definitely not be driving to Boston in the storm. Today, I dined on delicacies from Au Bon Pain once again – what a delight! I’m going to have to get creative tomorrow or fall back on good old PB&J which is always a safe bet!
So far round 2 of chemo has gone as well as round 1 and I am thankful for your prayers that are helping to keep it so.
Bob
December 17, 2008 7:40 PM
Well, it’s deja vu all over again – but not quite. I’m back in the hospital for chemo until Monday but I am on a different floor than the first time so other than 1 of the nurses, they are all new to me and me to them. My new room number is 5B 31. Also, I have to share the room with another gentleman who is hoping to go home tomorrow. Maybe that will happen and I’ll once again have a private room. I don’t need a private room because my counts won’t bottom out until 10 days from now.
It’s been a day of adventure starting with the power going off at 12:15 last night. Fortunately, it came on a half hour later. However, when we got up, it was snowing and there was an inch or 2 on the ground. Leaving just before 6:00 for an 8:30 appointment we were only about 15 minutes late! The traffic was horrible! The good news was that they took me right away – the bad news was that they did not begin the chemo at that point and we waited around until noontime before they actually started it. This means that the 5 days will expire sometime early Monday afternoon. And, with any luck, I should be able to go home later that afternoon.
Given the fact that it seems that every time we come down here, the weather seems to be miserable – my doctor suggested that it might be possible to go to a facility in Manchester to get my blood drawn and counts taken. This would be a Godsend - especially the way that the winter weather seems to be taking a turn for the worse. It appears that the watchword is now “patient safety” (I know, I know – that’s 2 words). It seems that a New Hampshire patient ran into a tree that had fallen across the road on Friday trying to get here for his appointment. Up until that point in time, getting work done in New Hampshire was deemed not to be an option.
So I dodged the cafeteria bullet again tonight as my wife, once again, bought me supper from the Au Bon Pain downstairs – delicious soup and a pastry.
So, for now, we are just going to ride out the 5 days and keep tabs on the bone marrow search as well.
I certainly still need everyone’s continued prayers and support as there is most definitely a long way to go before this problem is licked.
Bob
It’s been a day of adventure starting with the power going off at 12:15 last night. Fortunately, it came on a half hour later. However, when we got up, it was snowing and there was an inch or 2 on the ground. Leaving just before 6:00 for an 8:30 appointment we were only about 15 minutes late! The traffic was horrible! The good news was that they took me right away – the bad news was that they did not begin the chemo at that point and we waited around until noontime before they actually started it. This means that the 5 days will expire sometime early Monday afternoon. And, with any luck, I should be able to go home later that afternoon.
Given the fact that it seems that every time we come down here, the weather seems to be miserable – my doctor suggested that it might be possible to go to a facility in Manchester to get my blood drawn and counts taken. This would be a Godsend - especially the way that the winter weather seems to be taking a turn for the worse. It appears that the watchword is now “patient safety” (I know, I know – that’s 2 words). It seems that a New Hampshire patient ran into a tree that had fallen across the road on Friday trying to get here for his appointment. Up until that point in time, getting work done in New Hampshire was deemed not to be an option.
So I dodged the cafeteria bullet again tonight as my wife, once again, bought me supper from the Au Bon Pain downstairs – delicious soup and a pastry.
So, for now, we are just going to ride out the 5 days and keep tabs on the bone marrow search as well.
I certainly still need everyone’s continued prayers and support as there is most definitely a long way to go before this problem is licked.
Bob
December 16, 2008
Well, we just returned from the hospital after speaking with the bone marrow transplant specialist. As with all things that are new to you - you learn quite a lot and the doctor is very patient and a very good teacher.
The bottom line is that with a continued regimen of chemo without a transplant there is about a 5% chance of making a full recovery - certainly not the best of odds. Likewise, should there be a relapse(obviously there is a 95% chance of that) - the cancer cells that come back would be very hardy because they would have survived all the chemo up to that point. It would then take even stronger doses of chemo to try to get rid of them. Given the fact that I am taking the 2nd strongest set of chemo drugs - there is only 1 option left - if that does not work then I would be out of luck. A bone marrow transplant would not be feasible at that point because I would no longer be in remission.
Now for the transplant option. Statistically, there is about a 40% chance of success with the transplant. For me this is an increase from my first visit to the doctor who said that there was about a 30% survival rate for someone my age. However, these are just numbers and do not necessarily apply to me!
Now for the normal vs reduced transplant approaches. Knowing that I would never explain it properly, I have excerpted the following explanation for a reduced intensity bone marrow transplant. Once the bone marrow has been transplanted, the....
"Reduced intensity conditioning refers to a conditioning regimen that uses less chemotherapy and radiation than the standard myeloablative conditioning regimen. Myeloablation is the result of an intensive conditioning regimen in which the bone marrow cells are destroyed. The goal of using a reduced intensity conditioning regimen is to decrease the transplant-related complications, toxicity and mortality. However, since myeloablation may not be achieved with this approach, the risk of rejecting the transplant may be higher compared to a full-intensity (myeloablative) conditioning regimen."
According to the doctors a full regimen of chemo and radiation would most likely be too much for an older person to withstand. However, the amount of reduction is somewhat based upon a person's overall health. The idea is to increase the likelihood for the patient to survive the procedure even though the overall likelihood of enacting a cure may be somehat reduced. It's trying to avoid the old joke about the operation being a success but the patient died. As I read further on this, the reduced intensity is also supposed to apply to the pre-transplant treatment as well which could result in not having all the cancer cells removed. That is most certainly not my situation and further explains why I have to go in tomorrow for the 5 and 2 regimen which is intended to keep me in full remission.
A few other points of interest were also discussed. I found out that my sister was only a 50% match for the transplant having matched 3 of the 6 criteria that make up the HLA values that the doctors use to seek compatible donors.
The doctor did a quick search of the bone marrow bank while we were there and came up with approximately 90 donors from around the world that will have to be further checked in detail to winnow it down to the most compatible ones. So it seems that we are off to a good start. It will probably be a good 2 months before the transplant will actually take place given the holidays, the donor filtering process, contacting the possible donor(s), etc.
Lastly, the doctor stated that the reduced intensity transplant only involved a hospital stay of about 8 days. Boy was that good news! People were telling me that I would be in for weeks. It does mean frequent trips to the hospital to monitor my recuperation - but I'll gladly pay that price! Unfortunately, my wife will have to pay it, too(she's been doing the driving)!
That's enough for today. Tomorrow I should be starting round 2 of chemo with the expectation that I will be back home on Monday. So it looks like the next installment will be from the hospital.
All for now....
Bob
The bottom line is that with a continued regimen of chemo without a transplant there is about a 5% chance of making a full recovery - certainly not the best of odds. Likewise, should there be a relapse(obviously there is a 95% chance of that) - the cancer cells that come back would be very hardy because they would have survived all the chemo up to that point. It would then take even stronger doses of chemo to try to get rid of them. Given the fact that I am taking the 2nd strongest set of chemo drugs - there is only 1 option left - if that does not work then I would be out of luck. A bone marrow transplant would not be feasible at that point because I would no longer be in remission.
Now for the transplant option. Statistically, there is about a 40% chance of success with the transplant. For me this is an increase from my first visit to the doctor who said that there was about a 30% survival rate for someone my age. However, these are just numbers and do not necessarily apply to me!
Now for the normal vs reduced transplant approaches. Knowing that I would never explain it properly, I have excerpted the following explanation for a reduced intensity bone marrow transplant. Once the bone marrow has been transplanted, the....
"Reduced intensity conditioning refers to a conditioning regimen that uses less chemotherapy and radiation than the standard myeloablative conditioning regimen. Myeloablation is the result of an intensive conditioning regimen in which the bone marrow cells are destroyed. The goal of using a reduced intensity conditioning regimen is to decrease the transplant-related complications, toxicity and mortality. However, since myeloablation may not be achieved with this approach, the risk of rejecting the transplant may be higher compared to a full-intensity (myeloablative) conditioning regimen."
According to the doctors a full regimen of chemo and radiation would most likely be too much for an older person to withstand. However, the amount of reduction is somewhat based upon a person's overall health. The idea is to increase the likelihood for the patient to survive the procedure even though the overall likelihood of enacting a cure may be somehat reduced. It's trying to avoid the old joke about the operation being a success but the patient died. As I read further on this, the reduced intensity is also supposed to apply to the pre-transplant treatment as well which could result in not having all the cancer cells removed. That is most certainly not my situation and further explains why I have to go in tomorrow for the 5 and 2 regimen which is intended to keep me in full remission.
A few other points of interest were also discussed. I found out that my sister was only a 50% match for the transplant having matched 3 of the 6 criteria that make up the HLA values that the doctors use to seek compatible donors.
The doctor did a quick search of the bone marrow bank while we were there and came up with approximately 90 donors from around the world that will have to be further checked in detail to winnow it down to the most compatible ones. So it seems that we are off to a good start. It will probably be a good 2 months before the transplant will actually take place given the holidays, the donor filtering process, contacting the possible donor(s), etc.
Lastly, the doctor stated that the reduced intensity transplant only involved a hospital stay of about 8 days. Boy was that good news! People were telling me that I would be in for weeks. It does mean frequent trips to the hospital to monitor my recuperation - but I'll gladly pay that price! Unfortunately, my wife will have to pay it, too(she's been doing the driving)!
That's enough for today. Tomorrow I should be starting round 2 of chemo with the expectation that I will be back home on Monday. So it looks like the next installment will be from the hospital.
All for now....
Bob
December 15, 2008 12:05 PM
Well, it's been an interesting few days. The ice storm wreaked havoc here at home and we were without electricity from 1 AM on Friday until 11 PM Friday night. However, when it came on at 11, it only stayed until on until about 5 AM and went off until 9 AM when it came on for good. We were without cable until 3 PM on Sunday so we had no phone, no TV, and no internet access until then.
The biggest casualty of the weekend was the bone marrow drive at Hampshire Hills scheduled for Saturday. Because of the storm damage - downed trees, downed wires, bloced roads, no electricity to hundreds of thousands of people - it had to be postponed until Saturday, January 17, 2009. Wow! What happened to 2008?
The major problem with the power going out early Friday morning was that we had to be at the hospital at 7 AM. So after the power went out, we slept fitfully until 4:45 when we got up and made ready for the ride to Boston while the storm was still going on. The trip was not the easiest of rides as it was pouring rain at times and trees were down close to the highway - some even blocking a lane here and there. But, fortunately, traffic was not too heavy at that hour and we arrived in plenty of time. Of course, when we finally saw the doctor she said that we really shouldn't have jeopardized ourselves by making the trip. Again, she doesn't know us too well - unless there was a blizzard, we were going to be there!
Now for the news of the visit. Great news! Monday's bone marrow biopsy results showed NO evidence of the leukemia and my blood counts further confirmed that finding. However, the big concern is to keep me in that state. So, the doctor said that when I came in on Tuesday to talk with the bone marrow specialist, I would be admitted once again for 5 days to undergo the 2 and 5 chemo regimen. This is a reduced version of the 3 and 7 that I initially had. Since I am already cancer free, there is no reason to keep me in the hospital beyond the 5 days to see what the results of the chemo would be. This means that when I do get home all my counts will be very low and my resistance to infection will be the same. So I will not be able to venture out for a couple of weeks. Thus, Christmas day will be spent here at home. I'm not complaining, mind you, because it is certainly far better that spending it in the hospital. I will then be required to go to the hospital twice a week after that to have my blood counts checked. As to the duration of my time at home, and what's next, we'll have to defer to what the doctor says on Tuesday. Again, a pain in the neck, because you cannot plan anything!
It was also explained to me, because of the risks that go along with it, that I would be having a reduced level of bone marrow transplant because of my age. Is this another example of a senior citizen discount?
Since Friday, it has been confirmed that I will actually be admitted on Wednesday which means that I will most likely be discharged on Monday. Still in time to be home for Christmas.
A little off subject here. But on Friday, without any power, we ate out for lunch and dinner and then tried to find an open movie theater to while away the evening. So we ended up seeing "The Day the Earth Stood Still" since it was the next movie to play. What a dog!!!! But it did accomplish what we wanted.
So we are fortunate in many ways. Medically, things are going as well as they can be. And, we are completely up and running here at home. So many people are still without power and have been told that it will still be days before it is restored.
Once again - life is good.
Bob
The biggest casualty of the weekend was the bone marrow drive at Hampshire Hills scheduled for Saturday. Because of the storm damage - downed trees, downed wires, bloced roads, no electricity to hundreds of thousands of people - it had to be postponed until Saturday, January 17, 2009. Wow! What happened to 2008?
The major problem with the power going out early Friday morning was that we had to be at the hospital at 7 AM. So after the power went out, we slept fitfully until 4:45 when we got up and made ready for the ride to Boston while the storm was still going on. The trip was not the easiest of rides as it was pouring rain at times and trees were down close to the highway - some even blocking a lane here and there. But, fortunately, traffic was not too heavy at that hour and we arrived in plenty of time. Of course, when we finally saw the doctor she said that we really shouldn't have jeopardized ourselves by making the trip. Again, she doesn't know us too well - unless there was a blizzard, we were going to be there!
Now for the news of the visit. Great news! Monday's bone marrow biopsy results showed NO evidence of the leukemia and my blood counts further confirmed that finding. However, the big concern is to keep me in that state. So, the doctor said that when I came in on Tuesday to talk with the bone marrow specialist, I would be admitted once again for 5 days to undergo the 2 and 5 chemo regimen. This is a reduced version of the 3 and 7 that I initially had. Since I am already cancer free, there is no reason to keep me in the hospital beyond the 5 days to see what the results of the chemo would be. This means that when I do get home all my counts will be very low and my resistance to infection will be the same. So I will not be able to venture out for a couple of weeks. Thus, Christmas day will be spent here at home. I'm not complaining, mind you, because it is certainly far better that spending it in the hospital. I will then be required to go to the hospital twice a week after that to have my blood counts checked. As to the duration of my time at home, and what's next, we'll have to defer to what the doctor says on Tuesday. Again, a pain in the neck, because you cannot plan anything!
It was also explained to me, because of the risks that go along with it, that I would be having a reduced level of bone marrow transplant because of my age. Is this another example of a senior citizen discount?
Since Friday, it has been confirmed that I will actually be admitted on Wednesday which means that I will most likely be discharged on Monday. Still in time to be home for Christmas.
A little off subject here. But on Friday, without any power, we ate out for lunch and dinner and then tried to find an open movie theater to while away the evening. So we ended up seeing "The Day the Earth Stood Still" since it was the next movie to play. What a dog!!!! But it did accomplish what we wanted.
So we are fortunate in many ways. Medically, things are going as well as they can be. And, we are completely up and running here at home. So many people are still without power and have been told that it will still be days before it is restored.
Once again - life is good.
Bob
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