Certainly another quiet day today. They are all going to be that way until the 11th. Received a full set of supplies today that need to be used to keep my Hickman cather flushed. The critical care team here in Bedford is very good at keeping on top of these things. Making sure that you have enough supplies and making sure that your other medical needs are addressed as well. My hats off to them. Not literally, though. With my relatively bald head, I don't take my hat off for anyone at this time - it's too darn cold!
It's kind of funny how different things crop up that you have somehow forgotten. One of my daughters and her family were over for dinner tonight and, of course, we talk about how things are going, who said what, what's next, etc. During the conversation, we mentioned that the woman that we spoke to on the 16th commented that 75 to 80% of the people who are sent home after having chemo return with the advent of a fever. They are very strict about this. Any temperature over 100.5 and they want you right back in the hospital. Since I have been home from the 22nd of December, my temperature has not exceeded 98.5. We have certainly played it very close to the vest when it comes to mixing with large crowds of people and it looks like it has paid off big time. But it is hard, because you feel like such a hermit at times. However, the downside here is much too risky to contemplate and it is much better to err on the side of caution.
Because of my good health through all of this, the doctors are both amazed and dumfounded. I have dodged every bullet and I stand before you as the poster child for the ideal manner in which a person is to undergo chemotherapy. I, again, thank you all so much. God has been so good to me through this entire ordeal up to now that I often wonder what I did to deserve such treatment. I do get the feeling that I am being set up for something but I have no idea what it is. We all know that God continually opens doors( and, likewise, closes others) in our lives and I have to admit that I am somewhat excited to see what doors will open for me in the future. Where is this journey really leading me?
Today, my priest called, and tomorrow he will stop by after church to bring communion. This is something that I have not had in quite a while and I miss it.
Once again, the words just seemed to flow tonight. When I sat down in front of the computer, I had no idea what I was going to say to all of you. But, writers block never seems to set in for me. Maybe that's another blessing(hopefully, not a curse) that I have. I know that what I just committed to the electronic page did some good for me - I can only hope that it did some good for some of you as well.
Bob
January 23, 2009 11:30 PM
It was literally a lazy day today.
In an effort to make the bone marrow biopsy less traumatic, they gave me some Atavan and morphene. Neither of which really took hold during the procedure because they did not wait too long after administering the drugs before they started. Fortunately, it was not as hit-or-miss as the last one and it went as well as possible. Believe me when I say that the most beautiful words that I like to hear during the procedure are "we're done!" "Almost done" doesn't cut it, and "we're about to get underway" just sends shivers throughout my body.
However, by the time that I got home, I was wiped out and immediately went to bed for about 3 hours. Even after "waking", I was still somewhat of a dishrag and, after eating lunch, I went for another nap. Some of this, I know, is also related to the fact that I did not sleep super well last in eager anticipation of the event so that when I got up this morning, I was definitely somewhat tired.
Anyway, it was an uneventful day - whatever I can remember of it.
Before the procedure, we spoke to the doctor so stated that I had done exceedingly well bouncing back from round 2 of the chemotherapy. So much so, that she even questioned "did they actually give me chemo for round 2". The reason was that, unbeknownst to her, my counts came back to "normal" so fast that she would go through the infusion lab on Fridays looking for me and I would have gone home already!
So, once again, my actual condition belies what would be expected from any "normal" person. The doctor considered it a huge blessing that that was the case and so do I. As I said before, God answers prayers - but you have to ask! Up to now, I would say that we are all doing pretty well in that category. So I thank you!
Today's bone marrow biopsy is, hopefully, going to confirm what all the blood tests/counts have indicated for the past month or so and that is that there is no sign of the disease. They do not want to launch into the transplant phase without knowing whether or not I am in full remission. If I am not, then some additional chemo regimen will be necessary to get me back to full remission. I will not look forward to that at all!
I have been called the "man who defied the odds", a "miracle man", a "fraud", and other terms because I have gone through the chemo stage so very, very well. Again, I thank you all for making that happen. I have definitely been the recipient of God's healing touch and I want everyone to be aware of that. Your efforts on my behalf have been extremely successful - so keep up the good work!
Bob
In an effort to make the bone marrow biopsy less traumatic, they gave me some Atavan and morphene. Neither of which really took hold during the procedure because they did not wait too long after administering the drugs before they started. Fortunately, it was not as hit-or-miss as the last one and it went as well as possible. Believe me when I say that the most beautiful words that I like to hear during the procedure are "we're done!" "Almost done" doesn't cut it, and "we're about to get underway" just sends shivers throughout my body.
However, by the time that I got home, I was wiped out and immediately went to bed for about 3 hours. Even after "waking", I was still somewhat of a dishrag and, after eating lunch, I went for another nap. Some of this, I know, is also related to the fact that I did not sleep super well last in eager anticipation of the event so that when I got up this morning, I was definitely somewhat tired.
Anyway, it was an uneventful day - whatever I can remember of it.
Before the procedure, we spoke to the doctor so stated that I had done exceedingly well bouncing back from round 2 of the chemotherapy. So much so, that she even questioned "did they actually give me chemo for round 2". The reason was that, unbeknownst to her, my counts came back to "normal" so fast that she would go through the infusion lab on Fridays looking for me and I would have gone home already!
So, once again, my actual condition belies what would be expected from any "normal" person. The doctor considered it a huge blessing that that was the case and so do I. As I said before, God answers prayers - but you have to ask! Up to now, I would say that we are all doing pretty well in that category. So I thank you!
Today's bone marrow biopsy is, hopefully, going to confirm what all the blood tests/counts have indicated for the past month or so and that is that there is no sign of the disease. They do not want to launch into the transplant phase without knowing whether or not I am in full remission. If I am not, then some additional chemo regimen will be necessary to get me back to full remission. I will not look forward to that at all!
I have been called the "man who defied the odds", a "miracle man", a "fraud", and other terms because I have gone through the chemo stage so very, very well. Again, I thank you all for making that happen. I have definitely been the recipient of God's healing touch and I want everyone to be aware of that. Your efforts on my behalf have been extremely successful - so keep up the good work!
Bob
January 22, 2009 11:00 PM
This should be a relatively quick one since I did nothing but stay home today.
Had company over for dinner tonight and we had a great time. Tomorrow brings forth bone marrow biopsy IV(I can hardly wait!). I have to start numbering them like the Super Bowl because each one seems like an unforgettable event to me. I hope that the number does not climb into the 40's as the Super Bowl has done.
Otherwise, I get my TB test read tomorrow and it's the last day at the clinic for over 2 weeks and that's a good thing.
I'll keep you posted...
Bob
Had company over for dinner tonight and we had a great time. Tomorrow brings forth bone marrow biopsy IV(I can hardly wait!). I have to start numbering them like the Super Bowl because each one seems like an unforgettable event to me. I hope that the number does not climb into the 40's as the Super Bowl has done.
Otherwise, I get my TB test read tomorrow and it's the last day at the clinic for over 2 weeks and that's a good thing.
I'll keep you posted...
Bob
January 21, 2009 11:15 PM
Having called the health insurance company as I said that I would yesterday, the women on the other end of the line remained unflappable. She claimed that no mistake had been made and that the double charged items had been paid for only once. Try as I may to get an understanding as to why my statement was so incorrect, she basically told me to ignore it and go by the company's web sit which shows the bill only being paid once. I am still a little dumfounded that the statement could be so wrong and that the insurance company will make no effort to correct it!
At the lab this morning, they took 24 tubes of blood. This was an alltime record for me, but the fellow who drew the blood said that he had done as many as 42 in the past! Also when I asked to get my results, because of the large number of tubes, the blood results were far more inclusive than what I normally see. Knowing that I am such a stickler for following good health practices(burgers, fries, regular sodas, gravy, stuffing, sweets, etc.), my wife was a little put out to see that my cholesterol level was 153 - well below the 200 number that they look for. Likewise, they did a urinalysis and that came out fine as well. So, basically every test that has been run, I have been able to pass with flying colors. As the doctor said later on, it's all in the genes.
After the lab session, we spoke to the social worker who really did not offer much new information to us. But she did say that the bone marrow specialist that I have(Dr. Joseph Antin), is world famous which is sure a comforting thought. In fact, he heads the Stem Cell Transplant Program of the Department of Medical Oncology at Dana-Farber.
The day concluded with a meeting with Dr. Antin. He explained the various drugs that are used to prepare for the transplant - which, as was said before, is a reduced intensity transplant. As a quick refresher, this means that the chemo beforehand is not quite as strong and there is no radiation treatment before the transplant either. The transplant itself is exactly the same and the likelihood that it will take is exactly the same as well. The overall difference is that there is more of a possibility for the leukemia to return with the reduced intensity that with the normal transplant procedure. Given the fact that 10 years ago, they would have done little or nothing for someone my age, I'll gladly take my chances. Dr. Antin is also known for being very conservative with his recuperation procedures and has basically laid out a 1 year program before I can get fully back on my feet again.
As we all agreed, however, we have to take it one day at a time because no one can predict the future as to how I'll react to the transplant and the medication that follows. He did say, however, that the goal is to be completely off of immuno-suppressant drugs at the end of the one year period. This is something to strive for! I thought that it was given that I would be taking these drugs for the rest of my life - you learn something new every day!
In the short, there was a further bit of good news in that after Friday's visit to the clinic, I do not have to make any more clinic visits before going into the hospital on February 11th. With my counts being fine, he said that I could take the 2 weeks off. Hallelulia!!
Lastly, I want to thank my coworkers at Nortel for once again sending me a thoughtful card. I know that times are tough there and to think that they will still spend a few moments of their time to think of me is very moving for me. I can't say enough about how much of a boost it gives my spirits. Thank you so very much!
Bob
At the lab this morning, they took 24 tubes of blood. This was an alltime record for me, but the fellow who drew the blood said that he had done as many as 42 in the past! Also when I asked to get my results, because of the large number of tubes, the blood results were far more inclusive than what I normally see. Knowing that I am such a stickler for following good health practices(burgers, fries, regular sodas, gravy, stuffing, sweets, etc.), my wife was a little put out to see that my cholesterol level was 153 - well below the 200 number that they look for. Likewise, they did a urinalysis and that came out fine as well. So, basically every test that has been run, I have been able to pass with flying colors. As the doctor said later on, it's all in the genes.
After the lab session, we spoke to the social worker who really did not offer much new information to us. But she did say that the bone marrow specialist that I have(Dr. Joseph Antin), is world famous which is sure a comforting thought. In fact, he heads the Stem Cell Transplant Program of the Department of Medical Oncology at Dana-Farber.
The day concluded with a meeting with Dr. Antin. He explained the various drugs that are used to prepare for the transplant - which, as was said before, is a reduced intensity transplant. As a quick refresher, this means that the chemo beforehand is not quite as strong and there is no radiation treatment before the transplant either. The transplant itself is exactly the same and the likelihood that it will take is exactly the same as well. The overall difference is that there is more of a possibility for the leukemia to return with the reduced intensity that with the normal transplant procedure. Given the fact that 10 years ago, they would have done little or nothing for someone my age, I'll gladly take my chances. Dr. Antin is also known for being very conservative with his recuperation procedures and has basically laid out a 1 year program before I can get fully back on my feet again.
As we all agreed, however, we have to take it one day at a time because no one can predict the future as to how I'll react to the transplant and the medication that follows. He did say, however, that the goal is to be completely off of immuno-suppressant drugs at the end of the one year period. This is something to strive for! I thought that it was given that I would be taking these drugs for the rest of my life - you learn something new every day!
In the short, there was a further bit of good news in that after Friday's visit to the clinic, I do not have to make any more clinic visits before going into the hospital on February 11th. With my counts being fine, he said that I could take the 2 weeks off. Hallelulia!!
Lastly, I want to thank my coworkers at Nortel for once again sending me a thoughtful card. I know that times are tough there and to think that they will still spend a few moments of their time to think of me is very moving for me. I can't say enough about how much of a boost it gives my spirits. Thank you so very much!
Bob
January 20, 2009 11:00 PM
Well, the glasses purchase went off without a hitch but with a couple of interesting points...
The eye exam revealed that my prescription was basically the same as it was 4 years ago which was no surprise to me. The interesting part was the doctor said that my eyes are correctable to 20-15 which is not very common for someone my age(how did she know how old I was?)
As I said yesterday, the main reason for this purchase was vanity - not mine - my wife's! She said that the lenses in my old pair were just too big. They were also scratched quite a bit which did make them an ideal candidate to be replaced. After the newer, smaller pair were made, the people in the eyeglass store then told me that they no longer carry lenses the size of my old ones implying that I was the only one on the planet to be wearing glasses that were so out of style. I must admit that no one has ever called me a slave to fashion - but I can dream can't I!
Lastly, I guess that we really have to start scrutinizing the hospital charges as they come in from the insurance company. We got a rather large hospital bill/statement from the insurance company today and in looking it over, it turns out that the hospital double billed charges in excess of $135,000. I can hardly wait to hear what the insurance company has to say about this!
Bob
The eye exam revealed that my prescription was basically the same as it was 4 years ago which was no surprise to me. The interesting part was the doctor said that my eyes are correctable to 20-15 which is not very common for someone my age(how did she know how old I was?)
As I said yesterday, the main reason for this purchase was vanity - not mine - my wife's! She said that the lenses in my old pair were just too big. They were also scratched quite a bit which did make them an ideal candidate to be replaced. After the newer, smaller pair were made, the people in the eyeglass store then told me that they no longer carry lenses the size of my old ones implying that I was the only one on the planet to be wearing glasses that were so out of style. I must admit that no one has ever called me a slave to fashion - but I can dream can't I!
Lastly, I guess that we really have to start scrutinizing the hospital charges as they come in from the insurance company. We got a rather large hospital bill/statement from the insurance company today and in looking it over, it turns out that the hospital double billed charges in excess of $135,000. I can hardly wait to hear what the insurance company has to say about this!
Bob
January 19, 2009 10:30 PM
Just a couple of unrelated things for the day.....
The doctor/lab visit went without a hitch. As usual, I did not require any kind of infusion as my counts are fine. However, in our discussion with the doctor afterwards, it was interesting to note her comments when we mentioned that up to 2000-2001 they would not even attempt to perform any kind of a bone marrow transplant on someone my age. When I mentioned that any chance was better than none at all, she commented that the real problem was trying to control the side effects from the transplant. They just did not understand why things went wrong and, when things did go wrong, it was a very unpleasant situation for the patient that offered no possibility of recovery.
Today, great advances in that area, have made transplants at my age a much more common practice and the side effects have been greatly reduced by the introduction of new drugs - now giving the patient a fighting chance. However, though it's still somewhat of a risky game, it is not being portrayed as a procedure that is perilously risky and the doctors look for a straightforward path to recovery. Medicine has certainly come a long way in a relatively short period of time. Much to my benefit - thank God! It really is hard to believe that less than 10 year's ago, my disease was a one way ticket to the checkout counter - I shudder at the thought!!!!!!
Well, I also took the potato chip plunge today and suffered no ill effects thereby - my taste buds are continuing to improve! So, I guess that I can put potato chips back on the menu at this time. The Frito-Lay company, I am sure, can now stop the plant closure.
I also just happened to notice that the hair on the back of my fingers is gone! I am not sure if this is a new phenomenon or not. But, the time is right, it has been a month since I had round 2 of chemo. So maybe this is a reaction to that - I don't know.
My wife wants me to get new glasses now that I am basically bald because she says that my large lenses make now me look like an owl - who'd a thunk it! So tomorrow we go for the new ones. I'll let you know how it goes.
Bob
The doctor/lab visit went without a hitch. As usual, I did not require any kind of infusion as my counts are fine. However, in our discussion with the doctor afterwards, it was interesting to note her comments when we mentioned that up to 2000-2001 they would not even attempt to perform any kind of a bone marrow transplant on someone my age. When I mentioned that any chance was better than none at all, she commented that the real problem was trying to control the side effects from the transplant. They just did not understand why things went wrong and, when things did go wrong, it was a very unpleasant situation for the patient that offered no possibility of recovery.
Today, great advances in that area, have made transplants at my age a much more common practice and the side effects have been greatly reduced by the introduction of new drugs - now giving the patient a fighting chance. However, though it's still somewhat of a risky game, it is not being portrayed as a procedure that is perilously risky and the doctors look for a straightforward path to recovery. Medicine has certainly come a long way in a relatively short period of time. Much to my benefit - thank God! It really is hard to believe that less than 10 year's ago, my disease was a one way ticket to the checkout counter - I shudder at the thought!!!!!!
Well, I also took the potato chip plunge today and suffered no ill effects thereby - my taste buds are continuing to improve! So, I guess that I can put potato chips back on the menu at this time. The Frito-Lay company, I am sure, can now stop the plant closure.
I also just happened to notice that the hair on the back of my fingers is gone! I am not sure if this is a new phenomenon or not. But, the time is right, it has been a month since I had round 2 of chemo. So maybe this is a reaction to that - I don't know.
My wife wants me to get new glasses now that I am basically bald because she says that my large lenses make now me look like an owl - who'd a thunk it! So tomorrow we go for the new ones. I'll let you know how it goes.
Bob
January 18, 2009 10:00 PM
Since it snowed all day, we obviously stuck it out in the house. But there are a couple of things that deserve to be mentioned.
The first is just a reminder about the bone marrow drive that will be held on February 7th at Hampshire Hills in Milford, NH from 10 AM to 2 PM.
The second is just to provide an update as to how my taste buds seem to be doing at this point in time. Even though I used to really crave that first cup of coffee in the morning, coffee has no appeal to me now. I can drink it again, but it is just not enjoyable as yet. This is one of the most common items that people who have had chemotherapy cannot readjust to. As one of the doctors said, if you can't drink coffee, it's no big deal. And since that first cup was usually my last cup, I really don't miss it.
Also, since I went into the hospital back in early November, my taste for alcohol has diminished somewhat as well. Though I have certainly had glasses of wine since I have been home, I have yet to make a mixed drink(maybe I've just gotten lazy!). When we go out, I may have a mixed drink now and then but not every time. Again, this is certainly no real loss either - especially given the fact that once I have the bone marrow transplant, there will be no alcoholic beverages allowed for 100 days thereafter.
As an aside, I have yet to try potato chips since I had the unpleasant experience a while back. I'll guess that I'll have to take the plunge in the near future. That's really been it at this point. I hope that the mini-chemo that I will have to undergo when I go back into the hospital will not cause any further damage to my taste buds.
Other than that, things are fine and we'll see the Manchester doctor tomorrow and get another update to my blood counts. I really expect that tomorrow will be a nothing kind of a day as it relates to my getting any kind of treatment.
Too bad the Steelers won - but I am glad that Arizona won. Go Cardinals - but I just can't see it happening, the Steeler defense is too good.
Bob
The first is just a reminder about the bone marrow drive that will be held on February 7th at Hampshire Hills in Milford, NH from 10 AM to 2 PM.
The second is just to provide an update as to how my taste buds seem to be doing at this point in time. Even though I used to really crave that first cup of coffee in the morning, coffee has no appeal to me now. I can drink it again, but it is just not enjoyable as yet. This is one of the most common items that people who have had chemotherapy cannot readjust to. As one of the doctors said, if you can't drink coffee, it's no big deal. And since that first cup was usually my last cup, I really don't miss it.
Also, since I went into the hospital back in early November, my taste for alcohol has diminished somewhat as well. Though I have certainly had glasses of wine since I have been home, I have yet to make a mixed drink(maybe I've just gotten lazy!). When we go out, I may have a mixed drink now and then but not every time. Again, this is certainly no real loss either - especially given the fact that once I have the bone marrow transplant, there will be no alcoholic beverages allowed for 100 days thereafter.
As an aside, I have yet to try potato chips since I had the unpleasant experience a while back. I'll guess that I'll have to take the plunge in the near future. That's really been it at this point. I hope that the mini-chemo that I will have to undergo when I go back into the hospital will not cause any further damage to my taste buds.
Other than that, things are fine and we'll see the Manchester doctor tomorrow and get another update to my blood counts. I really expect that tomorrow will be a nothing kind of a day as it relates to my getting any kind of treatment.
Too bad the Steelers won - but I am glad that Arizona won. Go Cardinals - but I just can't see it happening, the Steeler defense is too good.
Bob
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