Finally! The end of February and spring is rapidly approaching - but winter won't go away yet with snow predicted to fall during some part of the next 3 days.
I am still feeling fine - there have been no repercussions from the 2 pints of blood that I received yesterday.
I am getting used to taking all the medications and drinking all that water. It seems that my internal clock is now programmed to keep me aware of what has to be taken when. So, taking my medications has become somewhat second nature to me now - like breathing out and breathing in(as the song goes).
However, I wish the doctors at the hospital would get together and decide how much of everything I really needed. Some things that I need to take for a year - they gave me a two week supply. While others that would only be necessary for a few weeks - I think that I got a lifetime supply.
At the doctor's office yesterday, they commented that if I started to feel any lower back pain or bone pain in any way it would be time to stop the neupogen shots that I have been taking every day because it would mean that my own white blood cells were starting to come back. I didn't think much of it until I got up this morning and started to experience the predicted lower back pain - making it uncomfortable to sit in some positions. So now I have stopped the shots. No loss for me as I found it not to be the most pleasant of experiences! I don't know how people with diabetes can do that every day - but I have a newfound respect for them! I guess that you just do what you have to do.
By the way, the pain has subsided and I guess that I am taking another step on the road to getting my counts back to normal.
So, it's getting near time to watch for the snow...
Bob
February 27, 2009 11:10 PM 90 days to go
It was a longggggggg day....
We left the house at 8:00 to get to the clinic a little after 9 AM. My blood was drawn just before 10 and then the problems started. My 11 AM appointment with the nurse practioner did not occur until 11:50. At which time, she told us that my need for 2 units of blood had been put in only 20 minutes beforehand - meaning that the earliest that it would arrive would be 1:00. No such luck! It came after 2:00 and then it took over 2 more hours for the infusions and we did not leave the clinic until about 5.
Ah! But the ordeal is still not over. It's Friday night. And the northbound traffic on Rt 93 is messier than usual as the Friday night commute always is. So... long story short, we arrived home about 7:00.
11 hours door to door - it was exhausting. And, of course, the stay at the clinic is further complicated by the fact that I cannot eat lunch with large crowds of people (I find that eating with a mask on has drawbacks to it) - so we had to find a somewhat secluded spot for lunch (how romantic). We had brought a peanut butter sandwich for me because I can only eat prepared food that has been prepared at home. My wife went to the cafeteria, bought her lunch, and backfilled the sandwich with chips, etc. and we ate off to the side in the main lobby sitting in 2 chairs next to the wall with a lamp table between us - not so romantic after all!
Now that you've heard my tale of woe, let's cut to the chase. How am I doing? I am doing fine. The need for the 2 units of blood was fully expected as some of my counts were very low. However, it appears that my white blood cell count is starting to turn around along with my platelets. So everything is still on schedule.
When I return to the clinic next Wednesday, I fully expect to see an additional rise in my counts as I continue my rebound back to normalcy. This should be the last time that I go through the neutropenic phase. With my counts back to normal, each clinic visit should then consist of a blood draw, an office visit, and possibly a readjustment of some of my medications as revealed by my blood results. All in all, a relatively compact time - totally unlike today which was my longest day ever at Dana-Farber.
The saddest part of the day was that with the weather being so beautiful, my wife and I talked about going out for a walk some time this afternoon as we travelled to Boston this morning - but that was certainly countermanded by the events of the day. I know that the next several days will not be conducive to an outdoor walk - so losing the opportunity is even more disappointing.
However, with spring coming, there will be other days...
Bob
We left the house at 8:00 to get to the clinic a little after 9 AM. My blood was drawn just before 10 and then the problems started. My 11 AM appointment with the nurse practioner did not occur until 11:50. At which time, she told us that my need for 2 units of blood had been put in only 20 minutes beforehand - meaning that the earliest that it would arrive would be 1:00. No such luck! It came after 2:00 and then it took over 2 more hours for the infusions and we did not leave the clinic until about 5.
Ah! But the ordeal is still not over. It's Friday night. And the northbound traffic on Rt 93 is messier than usual as the Friday night commute always is. So... long story short, we arrived home about 7:00.
11 hours door to door - it was exhausting. And, of course, the stay at the clinic is further complicated by the fact that I cannot eat lunch with large crowds of people (I find that eating with a mask on has drawbacks to it) - so we had to find a somewhat secluded spot for lunch (how romantic). We had brought a peanut butter sandwich for me because I can only eat prepared food that has been prepared at home. My wife went to the cafeteria, bought her lunch, and backfilled the sandwich with chips, etc. and we ate off to the side in the main lobby sitting in 2 chairs next to the wall with a lamp table between us - not so romantic after all!
Now that you've heard my tale of woe, let's cut to the chase. How am I doing? I am doing fine. The need for the 2 units of blood was fully expected as some of my counts were very low. However, it appears that my white blood cell count is starting to turn around along with my platelets. So everything is still on schedule.
When I return to the clinic next Wednesday, I fully expect to see an additional rise in my counts as I continue my rebound back to normalcy. This should be the last time that I go through the neutropenic phase. With my counts back to normal, each clinic visit should then consist of a blood draw, an office visit, and possibly a readjustment of some of my medications as revealed by my blood results. All in all, a relatively compact time - totally unlike today which was my longest day ever at Dana-Farber.
The saddest part of the day was that with the weather being so beautiful, my wife and I talked about going out for a walk some time this afternoon as we travelled to Boston this morning - but that was certainly countermanded by the events of the day. I know that the next several days will not be conducive to an outdoor walk - so losing the opportunity is even more disappointing.
However, with spring coming, there will be other days...
Bob
February 26, 2009 11:45 PM 91 days to go
Today was another good day for me healthwise.
But it was not a good day newswise because I found out that someone I had worked rather closely with at times over the years has about 1 week to live. If I understand it correctly, he has some kind of blood disorder - whether leukemia or not, I don't know. A friend of mine went to the hospital to see him once he heard the news and said that the situation didn't look good even though, in conversation, the sick man said that he fully intended to get back to work. I certainly hope and pray that that comes to pass - but from all indications, I sincerely doubt it. That's one of the most frustrating things about all of his, I can't go to the hospital to visit him and I cannot go to the wake and funeral to offer my condolences to his wife and son. All I can do is offer prayers for both him and his family which I am doing.
I tried to call him on the phone but I was unsuccessful in reaching him. Honestly, I would have to say that maybe it was for the better that I didn't reach him because I really was not sure what I would have said to him. I know that God would have given me words to say, but I would always wonder how comforting they would have been to him. My friend had the same problem as well. So they talked about old times and I guess that I could have fallen back on that as well.
It is so hard when things are not going well to find things to say that could possibly cheer someone up. Fortunately, for all of you(and me!), things have gone extremely well in my case and that makes it so much easier to talk about everything that I have undergone. Unlike my dying coworker who wished to keep his condition to himself and his family - and I can understand the reasons for that - I chose the exact opposite approach at the very beginning when I had no clue how this was all going to play out. I was fully prepared to keep the blog going even if things did not go the way that we have all wanted to see them go. It probably would not have been an every day endeavor, however, if my condition had worsened. I know, for example, one day late in my first chemo treatment, I was so tired that I really did not have the energy to do that day's entry. However, they gave me 2 units of blood and I perked right up and was able to continue on with no problem.
Change of subject here. Every month, the Milford fire department has a general meeting for the firefighters for which dinner is provided by one of the members. As payback for the extreme generosity of the firefighters, my wife and daughter stepped in tonight to furnish that need. I am deeply indebted to both of them for their hard work. I am sure that the firefighters were pleased as well by the homecooked food.
Tomorrow is the third and last visit to the clinic for the week. Next week starts the once a week Wednesday schedule. Hopefully, I am on the rebound and get in and out quickly. However, it is more important that I get the treatment that I need even if it means a lengthy stay.
So, I'll let you know tomorrow how it all worked out...
Bob
But it was not a good day newswise because I found out that someone I had worked rather closely with at times over the years has about 1 week to live. If I understand it correctly, he has some kind of blood disorder - whether leukemia or not, I don't know. A friend of mine went to the hospital to see him once he heard the news and said that the situation didn't look good even though, in conversation, the sick man said that he fully intended to get back to work. I certainly hope and pray that that comes to pass - but from all indications, I sincerely doubt it. That's one of the most frustrating things about all of his, I can't go to the hospital to visit him and I cannot go to the wake and funeral to offer my condolences to his wife and son. All I can do is offer prayers for both him and his family which I am doing.
I tried to call him on the phone but I was unsuccessful in reaching him. Honestly, I would have to say that maybe it was for the better that I didn't reach him because I really was not sure what I would have said to him. I know that God would have given me words to say, but I would always wonder how comforting they would have been to him. My friend had the same problem as well. So they talked about old times and I guess that I could have fallen back on that as well.
It is so hard when things are not going well to find things to say that could possibly cheer someone up. Fortunately, for all of you(and me!), things have gone extremely well in my case and that makes it so much easier to talk about everything that I have undergone. Unlike my dying coworker who wished to keep his condition to himself and his family - and I can understand the reasons for that - I chose the exact opposite approach at the very beginning when I had no clue how this was all going to play out. I was fully prepared to keep the blog going even if things did not go the way that we have all wanted to see them go. It probably would not have been an every day endeavor, however, if my condition had worsened. I know, for example, one day late in my first chemo treatment, I was so tired that I really did not have the energy to do that day's entry. However, they gave me 2 units of blood and I perked right up and was able to continue on with no problem.
Change of subject here. Every month, the Milford fire department has a general meeting for the firefighters for which dinner is provided by one of the members. As payback for the extreme generosity of the firefighters, my wife and daughter stepped in tonight to furnish that need. I am deeply indebted to both of them for their hard work. I am sure that the firefighters were pleased as well by the homecooked food.
Tomorrow is the third and last visit to the clinic for the week. Next week starts the once a week Wednesday schedule. Hopefully, I am on the rebound and get in and out quickly. However, it is more important that I get the treatment that I need even if it means a lengthy stay.
So, I'll let you know tomorrow how it all worked out...
Bob
February 25, 2009 11:45 PM 92 days to go
The day went very well at Dana-Farber. As expected, my counts were approaching their nadir - requiring that I have an infusion of platelets. Fortunately, no blood transfusions were required because we would have had a much longer stay at the clinic. As it was, we arrived around 7 AM and left about 10:30 with an hour and a half wait in the middle while they had to order the platelets. I'm hoping that by Friday my counts will be on the rise and I won't have to have any infusions at all. It makes the time at the clinic so much shorter and more pleasant when you can simply undergo the blood draw, talk to the doctor, and then go home.
The methotrexate chemo was completed on Monday, so that element of our clinic visit is no longer present. We asked the nurse practioner why the addition mini-chemo after the transplant? She stated that it helped to kill the T-cells which fight the transplant and it makes the integration of my blood and the donors take place more effectively.
Today is a bummer, in a way, because it is Ash Wednesday and I was unable to go to church tonight to get my ashes. However, I was glad that my wife did go with some friends. She did not want to go alone. I can understand that - but, fortunately, that was not the case. Now that Lent is underway, it makes not going to church that much more of a loss. But, I have no choice and, as one doctor said, we don't look at this year - we look to the years after that. That's what keeps me going, I know that ultimately I'll be back on track.
One thing I have not discussed is the scene around the construction of the new Yawkey Cancer Center that is going on and is in plain view as we take the walkway over the street from the parking lot to the clinic. Several years ago, the children taped their names to the windows of their rooms and the iron workers then spray painted the names on the girders of another building that they were constructing.
This time, the names are taped to the glass of the walkway. The iron workers then spray paint the names on the girders and hoist them into place. But the sight that is so heart wrenching is to see bald-headed children, seated in wheel chairs, connected to an IV, with their parents offering encouragement and endeavoring to cheer them up as they see their names on the girders.
It seems so unfair that little children should have to go through the rigors of cancer treatment and miss out on what should be the most enjoyable part of their lives. I don't know how the staff can bear up under this injustice. I know that every time my wife and I view this sight, it just tears us apart. Having to view this is about the worst part of my treatment regimen.
As I said(wrote!) at the outset, my counts are fine. This includes my creatinine which they closely monitor because it indicates how well my kidneys are working. So I guess that I am drinking enough water even though it makes me feel like a camel.
I guess that I have written enough for today even though when I sat down, I had no idea what I was going to write. I know that I have rambled on a bit, but I want to share with you all aspects of this experience. Because I am praying that none of you will undergo this, I want you to have a full understanding of what is involved so that you can better relate to those you happen to meet that might have had to undergo some sort of cancer treatment. Though treatments differ depending on what type of cancer you have and how virulent it is, you will still have some knowledge of the process and can be more supportive of their illness and the recovery process.
Enough, enough, Bob! I have to stop, otherwise I'll not have anything to write about in the future.
That's it for today...
Bob
The methotrexate chemo was completed on Monday, so that element of our clinic visit is no longer present. We asked the nurse practioner why the addition mini-chemo after the transplant? She stated that it helped to kill the T-cells which fight the transplant and it makes the integration of my blood and the donors take place more effectively.
Today is a bummer, in a way, because it is Ash Wednesday and I was unable to go to church tonight to get my ashes. However, I was glad that my wife did go with some friends. She did not want to go alone. I can understand that - but, fortunately, that was not the case. Now that Lent is underway, it makes not going to church that much more of a loss. But, I have no choice and, as one doctor said, we don't look at this year - we look to the years after that. That's what keeps me going, I know that ultimately I'll be back on track.
One thing I have not discussed is the scene around the construction of the new Yawkey Cancer Center that is going on and is in plain view as we take the walkway over the street from the parking lot to the clinic. Several years ago, the children taped their names to the windows of their rooms and the iron workers then spray painted the names on the girders of another building that they were constructing.
This time, the names are taped to the glass of the walkway. The iron workers then spray paint the names on the girders and hoist them into place. But the sight that is so heart wrenching is to see bald-headed children, seated in wheel chairs, connected to an IV, with their parents offering encouragement and endeavoring to cheer them up as they see their names on the girders.
It seems so unfair that little children should have to go through the rigors of cancer treatment and miss out on what should be the most enjoyable part of their lives. I don't know how the staff can bear up under this injustice. I know that every time my wife and I view this sight, it just tears us apart. Having to view this is about the worst part of my treatment regimen.
As I said(wrote!) at the outset, my counts are fine. This includes my creatinine which they closely monitor because it indicates how well my kidneys are working. So I guess that I am drinking enough water even though it makes me feel like a camel.
I guess that I have written enough for today even though when I sat down, I had no idea what I was going to write. I know that I have rambled on a bit, but I want to share with you all aspects of this experience. Because I am praying that none of you will undergo this, I want you to have a full understanding of what is involved so that you can better relate to those you happen to meet that might have had to undergo some sort of cancer treatment. Though treatments differ depending on what type of cancer you have and how virulent it is, you will still have some knowledge of the process and can be more supportive of their illness and the recovery process.
Enough, enough, Bob! I have to stop, otherwise I'll not have anything to write about in the future.
That's it for today...
Bob
February 24, 2009 11:30 PM 93 days to go
Well, tomorrow it's back to the hospital just to make sure that everything is on track. The ride is always tough and tomorrow we have to be there by 7:15 so we're up at 5 AM and out the door by 5:45. Reluctantly, no beauty sleep for me - not that I need it!
My sister-in-law and brother-in-law came for dinner tonight and it was nice to have company. The first since I had the marrow transplant and, hopefully, the first of many visits from both family and friends.
More important than my having visitors is the fact that my wife has to get out! Fortunately, I feel as great as I do which means that I really do not need a caretaker all day long. A few friends have offered to take her out in the ensuing weeks which has provided her with something to look forward to. Even though I am at home, you can certainly suffer from "cabin fever" after a while. Unfortunately, there is no medication for it among the many that I have to take so I am just going to have to tough it out. This part of the whole process is probably going to be the hardest part of my journey. Admittedly, the food was lousy in the hospital and it was only one room, but you at least had the hospital staff to converse with on a daily basis.
While the food is great here at home and my wife is certainly good company, I miss the opportunity to go out in the real world and co-mingle with others. Right now, even work sounds intriguing. Boy, I never thought the day would come when I would make that statement!
But, we look forward to getting out to the great outdoors when the weather breaks and spring is just around the corner. Thank God!
Gotta go get some sleep, 5 AM will be here before you know it...
Bob
My sister-in-law and brother-in-law came for dinner tonight and it was nice to have company. The first since I had the marrow transplant and, hopefully, the first of many visits from both family and friends.
More important than my having visitors is the fact that my wife has to get out! Fortunately, I feel as great as I do which means that I really do not need a caretaker all day long. A few friends have offered to take her out in the ensuing weeks which has provided her with something to look forward to. Even though I am at home, you can certainly suffer from "cabin fever" after a while. Unfortunately, there is no medication for it among the many that I have to take so I am just going to have to tough it out. This part of the whole process is probably going to be the hardest part of my journey. Admittedly, the food was lousy in the hospital and it was only one room, but you at least had the hospital staff to converse with on a daily basis.
While the food is great here at home and my wife is certainly good company, I miss the opportunity to go out in the real world and co-mingle with others. Right now, even work sounds intriguing. Boy, I never thought the day would come when I would make that statement!
But, we look forward to getting out to the great outdoors when the weather breaks and spring is just around the corner. Thank God!
Gotta go get some sleep, 5 AM will be here before you know it...
Bob
February 23, 2009 11:15 PM 94 days to go
Well, we dodged a mini-bullet today when we went to the clinic and I didn't need any unscheduled infusions. Admittedly, I was skating on thin ice here as my counts were near their baseline limits that would require blood and/or platelets. Not having any infusions shortens the visit by about 3 hours. It was also the last day for the short methotrexate chemo infusion. So that is now behind me.
On the other hand, as my counts are where they are, they wish to monitor me very closely so we now have to go back on Wednesday and possibly Friday this week. At this juncture, my counts are starting to make the expected decline as I become neutropenic. Thus, I don't expect that on Wednesday we will be as lucky as today. The lowered counts are expected to last about a week.
Otherwise, my test results showed that there is nothing outside what is expected so I am doing fine. Each time I go to the clinic, they also do a mini-check of my heart/lungs/mouth, they take my vitals (oxygen level, weight, temperature, and blood pressure), they check for fluid retention, and they ask the usual litany of questions including nausea, appetite, rashes, etc. Each time all of these items are fine as well.
So I am still very fortunate to maintain my status as the perfect patient poster child. Thank you, God. I am very grateful for it.
And, thank you all very much for keeping those prayers coming...
Bob
On the other hand, as my counts are where they are, they wish to monitor me very closely so we now have to go back on Wednesday and possibly Friday this week. At this juncture, my counts are starting to make the expected decline as I become neutropenic. Thus, I don't expect that on Wednesday we will be as lucky as today. The lowered counts are expected to last about a week.
Otherwise, my test results showed that there is nothing outside what is expected so I am doing fine. Each time I go to the clinic, they also do a mini-check of my heart/lungs/mouth, they take my vitals (oxygen level, weight, temperature, and blood pressure), they check for fluid retention, and they ask the usual litany of questions including nausea, appetite, rashes, etc. Each time all of these items are fine as well.
So I am still very fortunate to maintain my status as the perfect patient poster child. Thank you, God. I am very grateful for it.
And, thank you all very much for keeping those prayers coming...
Bob
February 22, 2009 10:20 PM 95 days to go
Happy birthday George Washington. Isn't it a shame that by celebrating his birthday on the third Monday in February, it can never be celebrated on the 22nd.
Well, back to business, I guess. Tomorrow is our next visit to the hospital and our luck holds true once again - it is snowing on the evening before we have to go. Though tomorrow's appointment is at 9:00, we'll have to leave extra early to give ourselves the opportunity to get there on time.
I am holding steady at this point and I feel fine. I have even drunk the cool-aid, so to speak, when it comes to drinking all that water. The downside of course is that you can never leave yourself in a position where a bathroom is not in view. Those lengthy trips back and forth from Boston now take on a whole new dimension!
So today's entry will be short as it was a quiet Sunday for us.
Tomorrow we will get a formal update of my status.
All for now...
Bob
Well, back to business, I guess. Tomorrow is our next visit to the hospital and our luck holds true once again - it is snowing on the evening before we have to go. Though tomorrow's appointment is at 9:00, we'll have to leave extra early to give ourselves the opportunity to get there on time.
I am holding steady at this point and I feel fine. I have even drunk the cool-aid, so to speak, when it comes to drinking all that water. The downside of course is that you can never leave yourself in a position where a bathroom is not in view. Those lengthy trips back and forth from Boston now take on a whole new dimension!
So today's entry will be short as it was a quiet Sunday for us.
Tomorrow we will get a formal update of my status.
All for now...
Bob
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