The good news is that I am still bored. I feel pretty good - but I have to admit that the appetite is diminishing even more. All part of the process. If all I have to worry about is loss of appetite, then I am doing well.
One would think that by reducing your oral intake, you would begin to lose some weight. Not true! My weight has actually increased somewhat over the past few days - all due to the fluid that they keep flowing into you. So I cannot recommend this as a viable way to lose weight! I was viewing this whole process as a sure fire way to being svelte once again - that was approximately 35 years ago!
Not much going on today. Had some visitors which was nice and Nancy ended up going home shortly after 7. I keep telling her to leave at a reasonable hour so that she can go home and get some rest.
I do have a TV. But, not being a big TV fan, I have not turned it on for the last 2 days. Maybe I’ll watch the BC - Notre Dame tonight.
So, it feels good to be over the 3 day-2 drug hurdle and now only concentrate on the 1 drug for the last 4 days. The doctors keep asking me about feeling any nausea and/or the need to vomit. Neither issue has surfaced. So the medication and my asking God to make this as pleasant as possible all seen to be working.
Sorry that I can’t be more interesting - but boredom is wonderfulllllll!!!!!!
Bob
November 7, 2008 7:10
OK. Time for another update as day 2 of the chemo is starting to come to a close. The main difference between today and yesterday is that my appetite is waning. As you can well imagine, this is a standard reaction to everything that is going on. According to the doctors, it is more important that I get liquid in my body than food. I am still allowed to eat anything that I want - even if I only desire to eat a bite or two.
That’s really the only negative at this point. I still feel fine and all my numbers are as they should be. So we are still proceeding according to plan.
My day was punctuated by a visit from a friend of mine whom I have known since I was 8 years old. It was a great time. Shortly after he left, my wife and daughter, Jennifer, arrived. We were joined by a hospital provided counselor who gave Nancy the greatest gift of all - the way to get free parking! The parking garage next to the hospital is a privately owned facility. The daily parking charge is $31 and there are no discounts offered! Figure it out! A minimum of 4 weeks(28 days) * $31 is $868 - what a rip! If I’m here for 6 weeks, its even worse! I think that the new administration should seriously consider offering free parking to everyone as well as all the other stuff we‘re supposed to get!
Unfortunately, the free parking is only made available to those who are closely related to patients in the hospital.
I am looking forward to concluding the 3 day portion of the chemo whereby I get 2 drugs so that I can get to only 1 drug which, supposedly, is the milder of the 2.
All in all, a quiet day - and that’s what everyone is looking for.
Bob
That’s really the only negative at this point. I still feel fine and all my numbers are as they should be. So we are still proceeding according to plan.
My day was punctuated by a visit from a friend of mine whom I have known since I was 8 years old. It was a great time. Shortly after he left, my wife and daughter, Jennifer, arrived. We were joined by a hospital provided counselor who gave Nancy the greatest gift of all - the way to get free parking! The parking garage next to the hospital is a privately owned facility. The daily parking charge is $31 and there are no discounts offered! Figure it out! A minimum of 4 weeks(28 days) * $31 is $868 - what a rip! If I’m here for 6 weeks, its even worse! I think that the new administration should seriously consider offering free parking to everyone as well as all the other stuff we‘re supposed to get!
Unfortunately, the free parking is only made available to those who are closely related to patients in the hospital.
I am looking forward to concluding the 3 day portion of the chemo whereby I get 2 drugs so that I can get to only 1 drug which, supposedly, is the milder of the 2.
All in all, a quiet day - and that’s what everyone is looking for.
Bob
November 6, 2008 5:55
OK, let’s start again.
The battle is now joined. Last night at 10:00, the chemo therapy began. This begins the regimen of 7 days for the IV chemo drug and 3 days for the “push” chemo drug. The latter requires about 10-15 minutes of a nurses time to push it into your system. Sounds kinda gross but its really not. Then comes the real fun. With all that liquid being put into you - it has to come out. So you spend half the night urinating and, since you are now awake, the other half thinking. Believe me when I say that the former accomplishes something while the latter does not. Needless to say, I felt some level of fear and trepidation before it began as this whole process is new to me - the need for chemo therapy, unfortunately, only befalls other people - never on us.
At present, I feel fine. This is completely normal as it takes several days for the effects of the drugs to take over. At that time, with my cell counts being low, any of a number of things could happen. But since each of us is a unique individual, no one can predict how it will play out. The nurses say that it can run the gamut from only being tired to having to undergo an extensive battle to fight off some kind of ailment. I should also state that before the process began, I received an anti-nausea drug which appears to be working fine. I have eaten both breakfast and lunch today with no problems.
Now for a bit of good news. I was talking with one of my doctors this morning about my blood count numbers. To a large extent they are normal with a few obvious exceptions caused by the leukemia. I asked him if there was any significance to that and he stated that it implied that I had a “light” case of leukemia. I hope this is not like being a “little bit” pregnant. In any case, because of this situation, he felt that my chances of achieving a full recovery are enhanced. As I had mentioned before, since the rest of my body was in “perfect” health(who needs a gym?), the doctors have the luxury of not holding back in my treatment which, once again, increases my chances for a full recovery. All of this was music to my ears. It’s a tune that I want to hear but it is the only music that I will be listening to for quite a while. It brings home the fact that I do miss the enjoyment of singing in my church choir. I love the camaraderie and it has always served as a great way to put the cares of everyday life aside for a while and just do something for the sheer fun of it.
The rest of this entry is going to be a mixed bag of things that have happened since yesterday’s entry and things that I have neglected to mention. So let’s start with some of the mundane. I am not allowed to brush my teeth. Pretty skeevy, eh? However, they give me a pill to dissolve in my mouth 4 times a day and a mouthwash to swish around twice a day. Even better, I am not allowed to shower for the next 7 days. So, if any of you are so inclined to want to visit me - it would appear that the sooner the better would be a good approach to take. I am sure that next week, even I would not like to visit me. Also, on the advice of several people, I decided to get a buzz cut on Monday prior to my entering the hospital on Tuesday. Everyone tells me how much younger it makes me look - no one tells me how much more handsome it makes me look. I’m bummed!
Bob Johnson the living, breathing person no longer exists! That’s right. I have been reduced to nothing but a bunch of numbers - height, weight, blood pressure, oxygen %, heart rate, temperature, and a set of blood counts. Thankfully, none of the numbers is zero but some of them are going to get pretty close. I’m counting on heart not being one of them!
As most of you know, a bone marrow transplant is also a part of my recovery program. At present, the only person of interest(to use a police term) is my sister. She, of course, is willing to help in any way possible - but, according to the doctors, the odds are only 1 in 4 of a match. Strangely, if you have 4 or more siblings, the odds do go up somewhat that you will find a match - but no where near 100%. Should my sister not be a match, the next step is a bone marrow bank. The doctors say that with my ethnicity, there should be an excellent chance that a match will be found. Still, until a true match is found, there is an element of doubt.
To further assist in the hunt, one of my daughters is starting a bone marrow drive that is to occur on December 13th, at Hampshire Hills in Milford, NH. More details will become available as the particulars are ironed out. The process as I understand it to be is a simple one - all that is required is a mouth swab. The likelihood of anyone on that day being a direct match for me is very slim. But the chance that anyone who participates can help someone else is not slim and people helping people is what life is all about.
So, what’s the major activity of my day? Boredom! However, the doctor says that I should be extremely grateful that that is the case. And, you know, he is right! Because boredom means that things are going along fine. Of course, my wife Nancy is always at my side. She is up everyday before 5 and here by 7. She cannot continue to maintain this pace as it will ultimately wear her down. Life has to go on for the healthy. I keep telling her to take a day off now and then but she won’t hear of it. I think that she is in need of a hearing aid.
I want to thank Ann Foster for the wonderful dinner basket that she brought to the house and I want to thank all of my co-workers at Nortel for their thoughtful food basket gift - flowers and plants are verboten! I also want to thank all of you who have taken the time to send me cards and e-mail. This whole experience has been a very humbling one for me. I’m just an average guy who happened to contract a not-so-average ailment. I do not know the significance or purpose of this adventure. But I do know that I cannot possibly come out at the end without being changed in some way. How will that outcome affect my life and that of others I do not know. It’s in God’s hands and He works in mysterious ways……
As a final note, given the fact that I will more than likely become more tired as the week progresses, it is my thought that the best way to contact me is via this blog or my e-mail. This allows me the luxury to respond to you when I am at my best.
Thanks,
Bob
The battle is now joined. Last night at 10:00, the chemo therapy began. This begins the regimen of 7 days for the IV chemo drug and 3 days for the “push” chemo drug. The latter requires about 10-15 minutes of a nurses time to push it into your system. Sounds kinda gross but its really not. Then comes the real fun. With all that liquid being put into you - it has to come out. So you spend half the night urinating and, since you are now awake, the other half thinking. Believe me when I say that the former accomplishes something while the latter does not. Needless to say, I felt some level of fear and trepidation before it began as this whole process is new to me - the need for chemo therapy, unfortunately, only befalls other people - never on us.
At present, I feel fine. This is completely normal as it takes several days for the effects of the drugs to take over. At that time, with my cell counts being low, any of a number of things could happen. But since each of us is a unique individual, no one can predict how it will play out. The nurses say that it can run the gamut from only being tired to having to undergo an extensive battle to fight off some kind of ailment. I should also state that before the process began, I received an anti-nausea drug which appears to be working fine. I have eaten both breakfast and lunch today with no problems.
Now for a bit of good news. I was talking with one of my doctors this morning about my blood count numbers. To a large extent they are normal with a few obvious exceptions caused by the leukemia. I asked him if there was any significance to that and he stated that it implied that I had a “light” case of leukemia. I hope this is not like being a “little bit” pregnant. In any case, because of this situation, he felt that my chances of achieving a full recovery are enhanced. As I had mentioned before, since the rest of my body was in “perfect” health(who needs a gym?), the doctors have the luxury of not holding back in my treatment which, once again, increases my chances for a full recovery. All of this was music to my ears. It’s a tune that I want to hear but it is the only music that I will be listening to for quite a while. It brings home the fact that I do miss the enjoyment of singing in my church choir. I love the camaraderie and it has always served as a great way to put the cares of everyday life aside for a while and just do something for the sheer fun of it.
The rest of this entry is going to be a mixed bag of things that have happened since yesterday’s entry and things that I have neglected to mention. So let’s start with some of the mundane. I am not allowed to brush my teeth. Pretty skeevy, eh? However, they give me a pill to dissolve in my mouth 4 times a day and a mouthwash to swish around twice a day. Even better, I am not allowed to shower for the next 7 days. So, if any of you are so inclined to want to visit me - it would appear that the sooner the better would be a good approach to take. I am sure that next week, even I would not like to visit me. Also, on the advice of several people, I decided to get a buzz cut on Monday prior to my entering the hospital on Tuesday. Everyone tells me how much younger it makes me look - no one tells me how much more handsome it makes me look. I’m bummed!
Bob Johnson the living, breathing person no longer exists! That’s right. I have been reduced to nothing but a bunch of numbers - height, weight, blood pressure, oxygen %, heart rate, temperature, and a set of blood counts. Thankfully, none of the numbers is zero but some of them are going to get pretty close. I’m counting on heart not being one of them!
As most of you know, a bone marrow transplant is also a part of my recovery program. At present, the only person of interest(to use a police term) is my sister. She, of course, is willing to help in any way possible - but, according to the doctors, the odds are only 1 in 4 of a match. Strangely, if you have 4 or more siblings, the odds do go up somewhat that you will find a match - but no where near 100%. Should my sister not be a match, the next step is a bone marrow bank. The doctors say that with my ethnicity, there should be an excellent chance that a match will be found. Still, until a true match is found, there is an element of doubt.
To further assist in the hunt, one of my daughters is starting a bone marrow drive that is to occur on December 13th, at Hampshire Hills in Milford, NH. More details will become available as the particulars are ironed out. The process as I understand it to be is a simple one - all that is required is a mouth swab. The likelihood of anyone on that day being a direct match for me is very slim. But the chance that anyone who participates can help someone else is not slim and people helping people is what life is all about.
So, what’s the major activity of my day? Boredom! However, the doctor says that I should be extremely grateful that that is the case. And, you know, he is right! Because boredom means that things are going along fine. Of course, my wife Nancy is always at my side. She is up everyday before 5 and here by 7. She cannot continue to maintain this pace as it will ultimately wear her down. Life has to go on for the healthy. I keep telling her to take a day off now and then but she won’t hear of it. I think that she is in need of a hearing aid.
I want to thank Ann Foster for the wonderful dinner basket that she brought to the house and I want to thank all of my co-workers at Nortel for their thoughtful food basket gift - flowers and plants are verboten! I also want to thank all of you who have taken the time to send me cards and e-mail. This whole experience has been a very humbling one for me. I’m just an average guy who happened to contract a not-so-average ailment. I do not know the significance or purpose of this adventure. But I do know that I cannot possibly come out at the end without being changed in some way. How will that outcome affect my life and that of others I do not know. It’s in God’s hands and He works in mysterious ways……
As a final note, given the fact that I will more than likely become more tired as the week progresses, it is my thought that the best way to contact me is via this blog or my e-mail. This allows me the luxury to respond to you when I am at my best.
Thanks,
Bob
November 6, 2008 2:30
I lost my original post for whatever reason. So I am stuck rewriting it. Please bear with me.
November 5, 2008 12:00
Let's get this underway. It's a good day. The election is over and the incessent political TV ads have mercifully come to a halt. It's also going to be a good day because the expectation is that later in the day my chemo will begin and the first positive step toward bringing my illness to a successful conclusion will have finally begun.
I want to lay down a few ground rules before I launch into the details of what's gone on, how I feel, what's next, etc. The first is that I am basically going to take a stream of consciousness approach to this whole thing. So looking for well thought out, well written entries most likely will not be in the cards as I flit from topic to topic as they enter my mind. Also, do not expect me to be able to post entries on a daily basis as I have been forewarned that there will be some days that the only activity that I will be able to handle is bed rest. Lastly, do not expect any high falutin' messages about the meaning of life, the important things in life, how we should enjoy each day as is it comes, etc. Why? Because....that's not me! That being said, however, I do not in any way wish to diminish the tremendous impact that every one of our family members, friends, coworkers, and others have already had on my wife and me and our collective journey has only begun. Let me also say at this time that I do not mean to slight anyone's contributions and support if I should make reference to someone's name and yours is not included.
I look for this blog to serve purposes. The first one is a little selfish in that I need some kind of catharsis mechanism to allow me to express the thoughts that are going on in my head. To me, this is going to be just as important a part of my healing process as any of the medications that I will be given. Secondly, it is just as important that each of you who is concerned about my condition - both mentally and physically - be allowed access to that information. Likewise, through the marvels of the internet and this blog you will be able to communicate with me as well. Those responses are, obviously, public. If you would like to communicate with me on a more private basis - my e-mail address is RLJemail@comcast.net. The snail mail address here is Brigham and Women's hospital, 75 Francis St., Boston, MA 02115. I am currently in room 6D722. The last reason is that this blog will relieve my wife of the tremendous burden of trying to field phone calls from each of you and also from feeling obligated to call people as various milestones occur along our march. I have only one job to do while she has the unenviable task of trying to hold the rest our lives together and to maintain some semblance of a normal life while, at the same time, supporting me through this endeavor.
One last thing before I get underway. As I said before, my room # is 6D722. It is a double sized room with only 1 bed in it and a little shopworn with its painted and wallpapered walls. It is somewhat pie shaped with its own private bath and an additional sink outside the bath. The view out the window is absolutely gorgeous - a rooftop down below and the sides of buildings. It is to be both my home and my prison for the next 4 to 6 weeks. I say prison because the door to the room is always closed and, whenever I leave the room, I must wear a surgical mask and gloves. However, currently my limitations are not yours. I am allowed healthy visitors but I am NOT allowed flowers and plants.
With the preliminaries over - lets now cut to the chase.
My name is Bob Johnson. I am 65 years old and I have been diagnosed as having leukemia. My life has come to a screeching halt with all aspects of it now funneled into one goal - to get well! I know that at various points in my life I asked myself the question - how would I respond if a doctor told me that I had cancer? When the moment arrived, I found myself being surprisedly calm. There was no need to launch into the 5 stages of denial, anger, etc, before one finally arrives at acceptance. The doctor might as well have told me that I had a cold, the measles, or whatever. A fact is a fact,however, and there is no getting around it. My only response was to say what's next?
Perhaps this was based upon any of several factors. As a child my parents were(and my mother still is) always realistic about addressing problems. When they arose - you faced them head on! Likewise, I am a Christian. How could I deny my faith by bewailing what had happened to me? How could I not possess full faith and confidence in the fact that God's healing hand will see me through this journey to a successful? The thought of "Why me?" had never crossed my mind.
In fact, I can see God's hand in this battle already. During our wonderful cruise of a few weeks ago, one of our side trips was cancelled forcing us to choose a substitute that involved climbing a large number of stairs which made my situation visible to my wife and sister-in-law and brother-in-law and causing my immediate visit to the doctor upon my return. At church on Sunday, a total stranger who was a cancer survivor spoke openly with me about what lies ahead and helped to set my mind at ease. Lastly, though I have never been a physical fitness devotee, my visit to the hospital 2 weeks ago revealed that, other than the leukemia, my body is in perfect health. This has allowed the doctors the wherewithal to fight this disease with every weapon that they can bring to bear thus increasing the likelihood of success.
I sit here today having had a "Hickman catheter" placed in me yesterday that allows for ready access for IV fluids and for drawing blood without the need to "stick me". This is a great relief as, having a blood disorder, there is a constant need to either inject or remove fluids and the body can only take so much. I have felt like a human pincushion over the past 2 weeks.
Currently, I am in the final stages of preparation for chemo. I am currently have a transfusion after having had x-rays, an EKG, and an electrocariogram. They tell me the chemo will occur today even it starts at 9:00 tonight.
Lastly, I want to thank all of you who have so thoughtfully sent cards and gifts and who have volunteered to help my wife in so many ways. Your kindness allows me to really see God working among his(no political correctness here!) people. And that is a true blessing!
I think that this will conclude today's entry for now!
I want to lay down a few ground rules before I launch into the details of what's gone on, how I feel, what's next, etc. The first is that I am basically going to take a stream of consciousness approach to this whole thing. So looking for well thought out, well written entries most likely will not be in the cards as I flit from topic to topic as they enter my mind. Also, do not expect me to be able to post entries on a daily basis as I have been forewarned that there will be some days that the only activity that I will be able to handle is bed rest. Lastly, do not expect any high falutin' messages about the meaning of life, the important things in life, how we should enjoy each day as is it comes, etc. Why? Because....that's not me! That being said, however, I do not in any way wish to diminish the tremendous impact that every one of our family members, friends, coworkers, and others have already had on my wife and me and our collective journey has only begun. Let me also say at this time that I do not mean to slight anyone's contributions and support if I should make reference to someone's name and yours is not included.
I look for this blog to serve purposes. The first one is a little selfish in that I need some kind of catharsis mechanism to allow me to express the thoughts that are going on in my head. To me, this is going to be just as important a part of my healing process as any of the medications that I will be given. Secondly, it is just as important that each of you who is concerned about my condition - both mentally and physically - be allowed access to that information. Likewise, through the marvels of the internet and this blog you will be able to communicate with me as well. Those responses are, obviously, public. If you would like to communicate with me on a more private basis - my e-mail address is RLJemail@comcast.net. The snail mail address here is Brigham and Women's hospital, 75 Francis St., Boston, MA 02115. I am currently in room 6D722. The last reason is that this blog will relieve my wife of the tremendous burden of trying to field phone calls from each of you and also from feeling obligated to call people as various milestones occur along our march. I have only one job to do while she has the unenviable task of trying to hold the rest our lives together and to maintain some semblance of a normal life while, at the same time, supporting me through this endeavor.
One last thing before I get underway. As I said before, my room # is 6D722. It is a double sized room with only 1 bed in it and a little shopworn with its painted and wallpapered walls. It is somewhat pie shaped with its own private bath and an additional sink outside the bath. The view out the window is absolutely gorgeous - a rooftop down below and the sides of buildings. It is to be both my home and my prison for the next 4 to 6 weeks. I say prison because the door to the room is always closed and, whenever I leave the room, I must wear a surgical mask and gloves. However, currently my limitations are not yours. I am allowed healthy visitors but I am NOT allowed flowers and plants.
With the preliminaries over - lets now cut to the chase.
My name is Bob Johnson. I am 65 years old and I have been diagnosed as having leukemia. My life has come to a screeching halt with all aspects of it now funneled into one goal - to get well! I know that at various points in my life I asked myself the question - how would I respond if a doctor told me that I had cancer? When the moment arrived, I found myself being surprisedly calm. There was no need to launch into the 5 stages of denial, anger, etc, before one finally arrives at acceptance. The doctor might as well have told me that I had a cold, the measles, or whatever. A fact is a fact,however, and there is no getting around it. My only response was to say what's next?
Perhaps this was based upon any of several factors. As a child my parents were(and my mother still is) always realistic about addressing problems. When they arose - you faced them head on! Likewise, I am a Christian. How could I deny my faith by bewailing what had happened to me? How could I not possess full faith and confidence in the fact that God's healing hand will see me through this journey to a successful? The thought of "Why me?" had never crossed my mind.
In fact, I can see God's hand in this battle already. During our wonderful cruise of a few weeks ago, one of our side trips was cancelled forcing us to choose a substitute that involved climbing a large number of stairs which made my situation visible to my wife and sister-in-law and brother-in-law and causing my immediate visit to the doctor upon my return. At church on Sunday, a total stranger who was a cancer survivor spoke openly with me about what lies ahead and helped to set my mind at ease. Lastly, though I have never been a physical fitness devotee, my visit to the hospital 2 weeks ago revealed that, other than the leukemia, my body is in perfect health. This has allowed the doctors the wherewithal to fight this disease with every weapon that they can bring to bear thus increasing the likelihood of success.
I sit here today having had a "Hickman catheter" placed in me yesterday that allows for ready access for IV fluids and for drawing blood without the need to "stick me". This is a great relief as, having a blood disorder, there is a constant need to either inject or remove fluids and the body can only take so much. I have felt like a human pincushion over the past 2 weeks.
Currently, I am in the final stages of preparation for chemo. I am currently have a transfusion after having had x-rays, an EKG, and an electrocariogram. They tell me the chemo will occur today even it starts at 9:00 tonight.
Lastly, I want to thank all of you who have so thoughtfully sent cards and gifts and who have volunteered to help my wife in so many ways. Your kindness allows me to really see God working among his(no political correctness here!) people. And that is a true blessing!
I think that this will conclude today's entry for now!
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