It's been a while!
And it's been a while for a reason - there is really nothing new to report. I can relate details of what I have done since the last post - but it consists of meeting with friends and being with family at various sporting events, at activities, at dinners, etc. Nothing of any medical significance has happened.
On Wednesday, I will start week 19 of photophoresis with - maybe - some little improvement having been realized over the first 18 weeks. Some days I really think so, other days I am not quite so sure.
Doctors visits are now at the three month interval time frame. My medications have remained the same for a year now. Nothing new appears to be on the horizon.
Lastly, it will be three years on the 29th since I was diagnosed with leukemia. Thank God the disease is in full remission and I have had these three years with the prospect of having many more.
I guess that I am politely saying that I think that it is time for me to bring this endeavor to an end. Google now has statistics so that I can see how many people have actually accessed this blog. Over the past year or so, the number has not been staggering. As readership has declined (and with good reason), it does not seem worthwhile to continually report a status quo of no new developments.
So after over 750 postings, I am making this my last one.
I wish to thank all of you who have supported me over the past three years with cards, phone calls, visits, etc. It has meant a lot to me and brought me to where I am today. I am so grateful and so blessed to have a wide circle of friends and a supporting family - I know of many others who have not been so fortunate.
So thank you again. Good bye and may God bless you everyone...
Bob
September 26, 2011 10:55 AM
I'm so fortunate!
Why? Well, over the weekend I received updates about the conditions of two people that I know who suffer from serious diseases. One fellow is the husband of one of our choir members who is suffering with ataxia (this I didn't know) - a genetic debilitating disease that affects the muscles. For him, today is as good as it gets. The second person is a fellow bridge player who is suffering with brain cancer and has now been given only a month or two to live. How grateful I am to not be in either category.
Could I be better? Sure! But as I said before, I can basically do the things that I really want to do - although at a slower pace. Getting from point A to point B is usually the issue. We played cards Saturday night, choir still is a go on Thursday nights and Sunday morning, grandchildren's soccer games are always on the list, etc. However, my son has moved into a condo and moving furniture is not on my to do list. His muscular friends did a great job in that area. By the way, he is getting better. He no longer wears a knee brace and it is just a matter of doing physical therapy. Some of which he got by simply pushing himself to assist with the moving over the weekend.
I should also comment that I still continue to walk on the treadmill whenever I can for at least half an hour. There are many advantages to that over walking outside: you have something to hold onto, it's flat, you can stop at any time and you are at home, and the weather is always perfect.
I am pushing myself to do a small project that is to be a surprise for one of my granddaughters. It's amazing to think that a year ago it would have been a no-brainer - but I look for it to be a no-brainer next year. As long as I am here, I can fight the battle and there is no reason to have any doubt about that.
So much for my Monday morning start to the week...
Bob
Why? Well, over the weekend I received updates about the conditions of two people that I know who suffer from serious diseases. One fellow is the husband of one of our choir members who is suffering with ataxia (this I didn't know) - a genetic debilitating disease that affects the muscles. For him, today is as good as it gets. The second person is a fellow bridge player who is suffering with brain cancer and has now been given only a month or two to live. How grateful I am to not be in either category.
Could I be better? Sure! But as I said before, I can basically do the things that I really want to do - although at a slower pace. Getting from point A to point B is usually the issue. We played cards Saturday night, choir still is a go on Thursday nights and Sunday morning, grandchildren's soccer games are always on the list, etc. However, my son has moved into a condo and moving furniture is not on my to do list. His muscular friends did a great job in that area. By the way, he is getting better. He no longer wears a knee brace and it is just a matter of doing physical therapy. Some of which he got by simply pushing himself to assist with the moving over the weekend.
I should also comment that I still continue to walk on the treadmill whenever I can for at least half an hour. There are many advantages to that over walking outside: you have something to hold onto, it's flat, you can stop at any time and you are at home, and the weather is always perfect.
I am pushing myself to do a small project that is to be a surprise for one of my granddaughters. It's amazing to think that a year ago it would have been a no-brainer - but I look for it to be a no-brainer next year. As long as I am here, I can fight the battle and there is no reason to have any doubt about that.
So much for my Monday morning start to the week...
Bob
September 18, 2011 9:30 PM
It's been a week!
Probably the longest time between postings. But, then again, not much has transpired over the past seven days. Week 15 of photophoresis has concluded with, in my opinion, not much change. Is that good or bad? I don't know. All I know is that I keep this up into December. Hopefully the weather cooperates as we progress towards winter.
Today was the first day of choir during the church service and, I must admit, it's a little bit of a struggle. But I managed to get through it and it's good to push yourself. I need to walk as much as I can and use my legs as much as I can.
Otherwise, it was a quiet week - playing bridge on Friday and Saturday nights. Not very sressful, but it keeps the mind going while you're having fun. Monday was my scleral lens appointment. Again, uneventful and we go back in a few months. The cloudiness still persists at times. However, they say that they have a possible fix for it but they have to work out the kinks over the next few weeks so they have put off having people try it until they are confident as to how to make it work effectively. We'll see!
I did go to two docent meetings at the Currier Museum as I am able to handle that without a problems. But, for now, doing Zimmerman house tours will have to be put on hold. It's not a real issue for the museaum as there are plenty of docents to fill the available tour slots. But, it's a bit of a guilt trip for me as I feel that I am not pulling my share of the load. When I share this with others, they all agree that doing what is necessary to regain good health is most important. While I can't argue the point, it still bothers me somewhat.
This upcoming week it's kind of back to normal. A couple of trips to Boston are on tap and that's about it.
All in all, I can't and won't and don't complain.
I'm doing all that is required to get me to where I want to be...
Bob
Probably the longest time between postings. But, then again, not much has transpired over the past seven days. Week 15 of photophoresis has concluded with, in my opinion, not much change. Is that good or bad? I don't know. All I know is that I keep this up into December. Hopefully the weather cooperates as we progress towards winter.
Today was the first day of choir during the church service and, I must admit, it's a little bit of a struggle. But I managed to get through it and it's good to push yourself. I need to walk as much as I can and use my legs as much as I can.
Otherwise, it was a quiet week - playing bridge on Friday and Saturday nights. Not very sressful, but it keeps the mind going while you're having fun. Monday was my scleral lens appointment. Again, uneventful and we go back in a few months. The cloudiness still persists at times. However, they say that they have a possible fix for it but they have to work out the kinks over the next few weeks so they have put off having people try it until they are confident as to how to make it work effectively. We'll see!
I did go to two docent meetings at the Currier Museum as I am able to handle that without a problems. But, for now, doing Zimmerman house tours will have to be put on hold. It's not a real issue for the museaum as there are plenty of docents to fill the available tour slots. But, it's a bit of a guilt trip for me as I feel that I am not pulling my share of the load. When I share this with others, they all agree that doing what is necessary to regain good health is most important. While I can't argue the point, it still bothers me somewhat.
This upcoming week it's kind of back to normal. A couple of trips to Boston are on tap and that's about it.
All in all, I can't and won't and don't complain.
I'm doing all that is required to get me to where I want to be...
Bob
September 11, 2011 8:10 PM
A time to remember!
It's a day to remember all those who lost there lives 10 years ago - the brave firefighters, police officers, and others who raced into the burning towers to save the lives of others. And, of course, all those innocent people who were unfortunate enough to be in the towers or on the airplanes. May God rest their souls and may today provide some additional closure to all of those who suffered the loss of a loved one or acquaintance on that day.
Fortunately for me, I did not suffer a personal loss on that day. But, in a strange turn of events, we went out to dinner with some friends several months beforehand prior to attending a concert and they brought along a coworker who ended up treating us to the dinner. That coworker was on one of the planes!
That day and one other stands out in my life as you remeber exactly what you were doing when you first got the news. The other! The day that President Kennedy was assassinated. It's hard to conceive, but a fair number of people that we know were either not around on that day or were much too young to be aware of the events of the day. I am beginning to feel so old!
Getting back to the more mundane, choir practice started Thursday night. It's nice to get back into a routine once again and to get back to something that I can do as the physical requirements are not too strenuous. I had to give un docenting at the Currier Museum this summer because the photophoresis treatments tend to tire you out and weaken you and I could not undergo much exposure to the sun as well. Hopefully next year will be a different story.
I did find out that I am a member of a rather exclusive club, however. I asked my doctor on Tuesday if he had any idea how many people were walking around with bone marrow transplants. He said that he didn't really know but that 10 to 15 thousand people have a transplant every year. From this he surmised that maybe 100 to 200 thousand people are living with a bone marrow transplant. Not a very large number when you look at the overall population of the world. That's not a lottery one wishes to win! However, I've won the bigger lottery by surviving and having a favorable prognosis for the future. I can't ask for more than that!
Tomorrow it's back to the scleral lens doctor for a visit. Just another stop on the way back to my "new normal".
Life must be lived...
Bob
It's a day to remember all those who lost there lives 10 years ago - the brave firefighters, police officers, and others who raced into the burning towers to save the lives of others. And, of course, all those innocent people who were unfortunate enough to be in the towers or on the airplanes. May God rest their souls and may today provide some additional closure to all of those who suffered the loss of a loved one or acquaintance on that day.
Fortunately for me, I did not suffer a personal loss on that day. But, in a strange turn of events, we went out to dinner with some friends several months beforehand prior to attending a concert and they brought along a coworker who ended up treating us to the dinner. That coworker was on one of the planes!
That day and one other stands out in my life as you remeber exactly what you were doing when you first got the news. The other! The day that President Kennedy was assassinated. It's hard to conceive, but a fair number of people that we know were either not around on that day or were much too young to be aware of the events of the day. I am beginning to feel so old!
Getting back to the more mundane, choir practice started Thursday night. It's nice to get back into a routine once again and to get back to something that I can do as the physical requirements are not too strenuous. I had to give un docenting at the Currier Museum this summer because the photophoresis treatments tend to tire you out and weaken you and I could not undergo much exposure to the sun as well. Hopefully next year will be a different story.
I did find out that I am a member of a rather exclusive club, however. I asked my doctor on Tuesday if he had any idea how many people were walking around with bone marrow transplants. He said that he didn't really know but that 10 to 15 thousand people have a transplant every year. From this he surmised that maybe 100 to 200 thousand people are living with a bone marrow transplant. Not a very large number when you look at the overall population of the world. That's not a lottery one wishes to win! However, I've won the bigger lottery by surviving and having a favorable prognosis for the future. I can't ask for more than that!
Tomorrow it's back to the scleral lens doctor for a visit. Just another stop on the way back to my "new normal".
Life must be lived...
Bob
September 7, 2011 12:30 AM
As you would wish it!
A great day for my counts and for everything else as well. The doctor was pleased to see how things were going with the photophoresis and that my counts were fine. As for my MRI - it was actually an ultrasound. And, there is absolutely nothing wrong there as well. Bottom line! Stay the course and come back in three months while maintaining all my meds and the two a week photophoresis sessions.
Other good news about my son. He went to the hospital with some pain. They did a thorough checkout and found that his blood clot was shrinking and that the pain was nothing to be concerned bout and that it would slowly subside as well.
All in all a good day for everyone.
Thabk God...
Bob
A great day for my counts and for everything else as well. The doctor was pleased to see how things were going with the photophoresis and that my counts were fine. As for my MRI - it was actually an ultrasound. And, there is absolutely nothing wrong there as well. Bottom line! Stay the course and come back in three months while maintaining all my meds and the two a week photophoresis sessions.
Other good news about my son. He went to the hospital with some pain. They did a thorough checkout and found that his blood clot was shrinking and that the pain was nothing to be concerned bout and that it would slowly subside as well.
All in all a good day for everyone.
Thabk God...
Bob
September 5, 2011 11:05 PM
Well, I forgot my computer!
When we went to the lake on Friday, I realized when we got there that I had forgotten to bring my laptop. In a way, it was not a big deal as not much really happened over the weekend. It was really R&R time(as if I do anything else anyway), in preparation for our three trips to Boston this week.
Tomorrow is my MRI and my visit to my oncologist. We'll see how they both go. Wednesday is a day off and Thursday and Friday are my photophoresis days. A busy week. I saw in our local newspaper that a massage facility is going to offer free massages to cancer patients currently undergoing treatmen during September and, possibly, October. I'll mention this to my oncologist and see if he feels that there is any benefit to my having any massages. I've never had one before so this would be another new adventure for me as well(add it to the list).
I'm still trying to connect with my San Francisco marathon team in training people but have been unable to do so as of yet. We're hoping to meet sometime during the next few weeks.
Other than that, life is quiet. Though last night a horrendous thunderstorm went right over us with lightning and claps of thunder like I have never heard before, Fortunately, there was no damage to anything. But it was extremely unsettling to listen to it at 5:00 in the morning.
Got home easily tonight as traffic was light. I guess that they all left early.
Gotta hit the sack, as 5 AM comes early...
Bob
When we went to the lake on Friday, I realized when we got there that I had forgotten to bring my laptop. In a way, it was not a big deal as not much really happened over the weekend. It was really R&R time(as if I do anything else anyway), in preparation for our three trips to Boston this week.
Tomorrow is my MRI and my visit to my oncologist. We'll see how they both go. Wednesday is a day off and Thursday and Friday are my photophoresis days. A busy week. I saw in our local newspaper that a massage facility is going to offer free massages to cancer patients currently undergoing treatmen during September and, possibly, October. I'll mention this to my oncologist and see if he feels that there is any benefit to my having any massages. I've never had one before so this would be another new adventure for me as well(add it to the list).
I'm still trying to connect with my San Francisco marathon team in training people but have been unable to do so as of yet. We're hoping to meet sometime during the next few weeks.
Other than that, life is quiet. Though last night a horrendous thunderstorm went right over us with lightning and claps of thunder like I have never heard before, Fortunately, there was no damage to anything. But it was extremely unsettling to listen to it at 5:00 in the morning.
Got home easily tonight as traffic was light. I guess that they all left early.
Gotta hit the sack, as 5 AM comes early...
Bob
September 2, 12:10 AM
Off to the lake in the morning!
Another chance to enjoy the beautiful New Hampshire summer as Labor Day Weekend is upon us and the weather is supposed to be georgeous. Labor Day kind of marks the end of summer even though there are officially 3 weeks left of summer according to the calendar. It's getting darker earlier and cooler in the evenings = all pointing to the fact that fall and winter(ugh!) are approaching.
For us it means that we enjoy 3 days of R & R and go back to Boston on Tuesday to see my oncologist and to get an MRI taken of a swelling in my Adams Apple area. It's been seen by two doctors already who say that it is nothing. But, they just wish to be sure. I've never had an MRI before so this will be a new experience for me. Add it to the list! I've had so many "new experiences" over the past, almost three years that they just seem to be another routine part of my ongoing story.
Meanwhile, life continues apace. Week thirteen of photophoresis is done. Looking at my arms tonight, one could surmise that visible progress has been made. My wife certainly feels that way. I don't wish to jump on the bandwagon just yet, but, for sure, there has been no detrimental effects from the treatment.
Tomorrow morning we pack, we'll leave after lunch and return on Monday in the afternoon.
It's time to enjoy the world as God meant us to...
Bob
Another chance to enjoy the beautiful New Hampshire summer as Labor Day Weekend is upon us and the weather is supposed to be georgeous. Labor Day kind of marks the end of summer even though there are officially 3 weeks left of summer according to the calendar. It's getting darker earlier and cooler in the evenings = all pointing to the fact that fall and winter(ugh!) are approaching.
For us it means that we enjoy 3 days of R & R and go back to Boston on Tuesday to see my oncologist and to get an MRI taken of a swelling in my Adams Apple area. It's been seen by two doctors already who say that it is nothing. But, they just wish to be sure. I've never had an MRI before so this will be a new experience for me. Add it to the list! I've had so many "new experiences" over the past, almost three years that they just seem to be another routine part of my ongoing story.
Meanwhile, life continues apace. Week thirteen of photophoresis is done. Looking at my arms tonight, one could surmise that visible progress has been made. My wife certainly feels that way. I don't wish to jump on the bandwagon just yet, but, for sure, there has been no detrimental effects from the treatment.
Tomorrow morning we pack, we'll leave after lunch and return on Monday in the afternoon.
It's time to enjoy the world as God meant us to...
Bob
Subscribe to:
Posts (Atom)
