It's half time for the UNC/Villanova game so I'll take the opportunity to do today's blog entry.
Again, there has been no change in my condition - I still feel fine. We had company for dinner - my daughter, son-in-law, and their 2 children. It certainly is nice to have company to break up the day. Not a great day to go outside, so staying inside is the only option while hope that spring will finally arrive. So far we're not off to a great start.
I did get some news that the company that I work for(Nortel) had another layoff with 5 more people in our department now out looking for non-existent jobs. I have no idea what life is going to be like when I can supposedly go back to work sometime in early 2010. Will Nortel exist? Will our department exist? Having been gone for a year and a half at that point, will my old job exist? It will be an interesting time.
As a pleasant surprise, I would have lost that last quarter that I was not willing to bet yesterday as, believe it or not, my medication actually did arrive today! Will miracles never cease!
So, with the basketball game now back underway, I'll bring an end to today's entry.
Bob
April 3, 2009 11:55 PM 55 days to go
It's going to be a really short entry today as there is not much to say other than the usual - I am feeling fine and I am enjoying the fact that I am able to maintain that status.
The dog slow US Postal Service has still not delivered my prescription and the on line prescription outfit says that it should take 3-5 days for it to arrive. So, tomorrow is the 5th day and I wouldn't bet my last quarter on its arrival. It is going to have to come pretty soon as I will run out sometime in the next few days.
Other than that a real quiet day but one in which I could not go out as it was raining all day. Hopefully, tomorrow will be better. It would be nice to get out and get some fresh air.
More importantly, the count keeps going down...
Bob
The dog slow US Postal Service has still not delivered my prescription and the on line prescription outfit says that it should take 3-5 days for it to arrive. So, tomorrow is the 5th day and I wouldn't bet my last quarter on its arrival. It is going to have to come pretty soon as I will run out sometime in the next few days.
Other than that a real quiet day but one in which I could not go out as it was raining all day. Hopefully, tomorrow will be better. It would be nice to get out and get some fresh air.
More importantly, the count keeps going down...
Bob
April 2, 2009 11:35 PM 56 days to go
It's been another good day today other than the fact that I finally had to complete my taxes and get them ready for my wife to mail tomorrow. I still have about 2 weeks to go but waiting until the last moment involves such a hassle at the post office so we might as well get it done now.
Another wonderful moment was my dealing with the on-line prescription outfit. The first call finally ended up with my being disconnected after being on hold for quite a while. With my frustration level rapidly rising, I called again and was told that they would "take care of it". I have my doubts, but I'll wait a few days before I pursue the matter again. also, according to their website, they also mailed out a prescription for me on Monday which was sent via our intrepid US Postal Service and has yet to arrive. Maybe, with all the new cost cutting measures that they want to put in place, they decided to walk it here - certainly running would be to much to ask for!
So, I am still feeling fine. The possibility of some reaction to graft vs host disease is now just around the corner but the doctor does not seem concerned at this point in time and I have yet to see any indication of it.
So, the wait goes on...
Bob
Another wonderful moment was my dealing with the on-line prescription outfit. The first call finally ended up with my being disconnected after being on hold for quite a while. With my frustration level rapidly rising, I called again and was told that they would "take care of it". I have my doubts, but I'll wait a few days before I pursue the matter again. also, according to their website, they also mailed out a prescription for me on Monday which was sent via our intrepid US Postal Service and has yet to arrive. Maybe, with all the new cost cutting measures that they want to put in place, they decided to walk it here - certainly running would be to much to ask for!
So, I am still feeling fine. The possibility of some reaction to graft vs host disease is now just around the corner but the doctor does not seem concerned at this point in time and I have yet to see any indication of it.
So, the wait goes on...
Bob
April 1, 2009 11:35 PM 57 days to go
Well, at last March is behind us and April fool's day is here. It is no April fool's joke that my counts today were perfect. It is probably the only time in my life whereby I have done anything perfectly but I would say that this is the time and place to achieve perfection.
Thus, the doctor's visit was short but, as usual, the lab was behind once again in drawing my blood so that a 2 hour visit turned into about 3 hours. During the doctor visit, I had to have him contact my on-line prescription provider as they were no longer honoring one of my prescriptions for some stupid reason. The issue appears to be resolved. We'll see if that's so when I go to reorder once again.
To answer last week's question from several of you about the 98% becoming 100% - the answer is yes, that should happen. The results from the blood based chimera test confirmed the bone marrow chimera test results. The only additional information that was gleaned was that the T-cell donor to me ratio is 75/25 at this time. The T-cells are the main fighters against foreign elements coming into the body. At this point they were looking for at least a 50/50 split so the doctor was happy with the result. If the ratio continues to increase, it indicates that I will not have any real problems with graft vs host disease. Ultimately, they are looking for a 100/0 ratio. However, the doctor stated that sometimes that does not happen and some of my T-cells could remain. In a few more weeks they will do another chimera test to see how things are progressing.
A couple of asides. During the visit the doctor kiddingly stated that my visiting the clinic on Wednesdays is probably the only "social life" that I have. He is sooooo right. Also, while sitting in the waiting room, you either overhear or engage in conversation with some of the other patients and you continually hear of people who have had a problem or problems along the way. What they speak of never became a part of my experience. I know that I have been extremely fortunate and these episodes only serve to highlight that even further. However, one thing that everyone did agree on was that a positive attitude was a major factor in achieving a positive outcome. Thank you all once again for your thoughts and prayers - this was also mentioned as playing a critical part in one's recovery as well.
So, obviously, I am doing better than well. I feel great and all of my test results confirm that I should. This makes it somewhat frustrating as I would like to be able to do more. But, following the doctor's instructions have brought me to this point and I certainly do not wish to rock the boat at this time.
One step backward in order to take many steps forward...
Bob
Thus, the doctor's visit was short but, as usual, the lab was behind once again in drawing my blood so that a 2 hour visit turned into about 3 hours. During the doctor visit, I had to have him contact my on-line prescription provider as they were no longer honoring one of my prescriptions for some stupid reason. The issue appears to be resolved. We'll see if that's so when I go to reorder once again.
To answer last week's question from several of you about the 98% becoming 100% - the answer is yes, that should happen. The results from the blood based chimera test confirmed the bone marrow chimera test results. The only additional information that was gleaned was that the T-cell donor to me ratio is 75/25 at this time. The T-cells are the main fighters against foreign elements coming into the body. At this point they were looking for at least a 50/50 split so the doctor was happy with the result. If the ratio continues to increase, it indicates that I will not have any real problems with graft vs host disease. Ultimately, they are looking for a 100/0 ratio. However, the doctor stated that sometimes that does not happen and some of my T-cells could remain. In a few more weeks they will do another chimera test to see how things are progressing.
A couple of asides. During the visit the doctor kiddingly stated that my visiting the clinic on Wednesdays is probably the only "social life" that I have. He is sooooo right. Also, while sitting in the waiting room, you either overhear or engage in conversation with some of the other patients and you continually hear of people who have had a problem or problems along the way. What they speak of never became a part of my experience. I know that I have been extremely fortunate and these episodes only serve to highlight that even further. However, one thing that everyone did agree on was that a positive attitude was a major factor in achieving a positive outcome. Thank you all once again for your thoughts and prayers - this was also mentioned as playing a critical part in one's recovery as well.
So, obviously, I am doing better than well. I feel great and all of my test results confirm that I should. This makes it somewhat frustrating as I would like to be able to do more. But, following the doctor's instructions have brought me to this point and I certainly do not wish to rock the boat at this time.
One step backward in order to take many steps forward...
Bob
March 31, 2009 10:35 PM 58 days to go
Well, we've made it through the month of March - less than 2 full months to go. I've gotta hang in there. It does get somewhat frustrating when you can't really go anywhere or do anything and you feel fine. It seems like life is going on around you and, other than connecting via the internet or watching television, you have no part in it whatsoever other than to be an observer. I can see that I would go nuts if I were locked up in prison.
I guess that's why I felt so satisfied when I was able to help that friend of my wife's with her web page issues. She stopped by today and we went over what she needed to do. She was very relieved to see how easy it was for her to accomplish what she wanted to do.
Tomorrow is going to be somewhat of a pain in the neck at the clinic because we had to make a late appointment. My labs are set for 12:30 and the doctor's visit for 1:00. Given the fact that the place is a madhouse around noon time, neither one of these times can be expected to be happen. And, if we get really delayed, it means that we travel home during rush hour traffic which is always a lot of fun.
As an aside, on Friday we placed an order with our critical care provider for some heparin syringes that are used for my daily catheter flushing. Of course, the order arrived today and it was all screwed up. When you call them on the phone to correct the mistake, the voice over, while you wait for the one live person who works there, stated over and over again how proud they were about the "quality and excellence" of their service. I guess standards have been lowered over the years. Either that or we have all now become so numb to getting poor service that we are grateful for whatever we can get and just accept it as "quality".
Here I go - digressing again. But when I feel as well as I do, then I do get involved with all these people and it becomes a major part of my life. My advice to all of you - don't become severely ill. If the disease doesn't get you, then the incompetence of all the ancilliary support institutions you have to deal with will just drive you crazy. As the Kingston Trio(boy, am I dating myself here) sang in the song "Everglades", "if the skeeters don't get you, then the gators will".
Tomorrow I'll fill you all in on how the battle is going with the latest input from Dana-Farber...
Bob
I guess that's why I felt so satisfied when I was able to help that friend of my wife's with her web page issues. She stopped by today and we went over what she needed to do. She was very relieved to see how easy it was for her to accomplish what she wanted to do.
Tomorrow is going to be somewhat of a pain in the neck at the clinic because we had to make a late appointment. My labs are set for 12:30 and the doctor's visit for 1:00. Given the fact that the place is a madhouse around noon time, neither one of these times can be expected to be happen. And, if we get really delayed, it means that we travel home during rush hour traffic which is always a lot of fun.
As an aside, on Friday we placed an order with our critical care provider for some heparin syringes that are used for my daily catheter flushing. Of course, the order arrived today and it was all screwed up. When you call them on the phone to correct the mistake, the voice over, while you wait for the one live person who works there, stated over and over again how proud they were about the "quality and excellence" of their service. I guess standards have been lowered over the years. Either that or we have all now become so numb to getting poor service that we are grateful for whatever we can get and just accept it as "quality".
Here I go - digressing again. But when I feel as well as I do, then I do get involved with all these people and it becomes a major part of my life. My advice to all of you - don't become severely ill. If the disease doesn't get you, then the incompetence of all the ancilliary support institutions you have to deal with will just drive you crazy. As the Kingston Trio(boy, am I dating myself here) sang in the song "Everglades", "if the skeeters don't get you, then the gators will".
Tomorrow I'll fill you all in on how the battle is going with the latest input from Dana-Farber...
Bob
March 30, 2009 11:05 PM 59 days to go
Well, with nothing better to do with my time, I played around with several programs that I have on hand and changed the header. I have never really been able to familiarize myself with some of the software that we have acquired over the years so now, obviously, seemed like a good opportunity. So don't be surprised if it changes again when another "brilliant" idea strikes me.
As you might surmise, I am still feeling fine. This Wednesday will not offer much new in the way of information but it is always nice to get an update on my blood counts just to make sure that everything inside seems to reflect what is going on outside.
So it will be a very short entry today with the major significant item being that the downcount is now into the 50's - so time is marching ever onward...
Bob
As you might surmise, I am still feeling fine. This Wednesday will not offer much new in the way of information but it is always nice to get an update on my blood counts just to make sure that everything inside seems to reflect what is going on outside.
So it will be a very short entry today with the major significant item being that the downcount is now into the 50's - so time is marching ever onward...
Bob
March 29, 2009 11:15 PM 60 days to go
It was a great day with family gathered around to celebrate my sister-in-law's birthday. Since I can't get out, the event had to be held at our place. And it does place a burden on my wife as everything must be cooked within our four walls - including the birthday cake. Nothing can be ordered from the outside.
Two weeks from now is Easter and my sister-in-law will host for the day. This means, of course, that I cannot attend - so it is going to be the loneliest Easter that I have ever spent. Obviously, I cannot go to church and I am forbidden to eat anywhere outside these four walls for the duration of the 100 days. But, as one of the doctor's said, we are not looking at this year - we are looking at the years to come. And, for sure, that prospect looks pretty bright at this time.
I was reading a newspaper column today that included the reaction of two people to chemotherapy and it was certainly not pleasant. The experience for each of them was horrible. Each time that I hear of stories like this, I feel so blessed that I have suffered none of the debilitating side effects that so many people have to endure.
Why has God chosen this path for me? What lies ahead for me? There must be a reason! But it almost makes it impossible for me to share my experience with anyone because I did not undergo any of the usual effects of that experience. I am not complaining, mind you, but it is hard to relate to these negative experiences that I hear and read so much about.
The last hurdle is rapidly coming up and that is the graft versus host disease(GVHD) and, if anything is to happen, that could begin to commence in the next few weeks. We'll just have to pay close attention and watch for any bodily changes.
So, to cap off today's entry, of course I am feeling fine. This, of course, begged the question that was raised once again today. Did I ever actually have leukemia? My only comment was that even if you were perfectly healthy - undergoing chemotherapy is no walk in the park for 90% of the people.
I am so blessed...
Bob
Two weeks from now is Easter and my sister-in-law will host for the day. This means, of course, that I cannot attend - so it is going to be the loneliest Easter that I have ever spent. Obviously, I cannot go to church and I am forbidden to eat anywhere outside these four walls for the duration of the 100 days. But, as one of the doctor's said, we are not looking at this year - we are looking at the years to come. And, for sure, that prospect looks pretty bright at this time.
I was reading a newspaper column today that included the reaction of two people to chemotherapy and it was certainly not pleasant. The experience for each of them was horrible. Each time that I hear of stories like this, I feel so blessed that I have suffered none of the debilitating side effects that so many people have to endure.
Why has God chosen this path for me? What lies ahead for me? There must be a reason! But it almost makes it impossible for me to share my experience with anyone because I did not undergo any of the usual effects of that experience. I am not complaining, mind you, but it is hard to relate to these negative experiences that I hear and read so much about.
The last hurdle is rapidly coming up and that is the graft versus host disease(GVHD) and, if anything is to happen, that could begin to commence in the next few weeks. We'll just have to pay close attention and watch for any bodily changes.
So, to cap off today's entry, of course I am feeling fine. This, of course, begged the question that was raised once again today. Did I ever actually have leukemia? My only comment was that even if you were perfectly healthy - undergoing chemotherapy is no walk in the park for 90% of the people.
I am so blessed...
Bob
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