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
August 31, 2011 10:25 PM
Not my update!
I'm doing as well as usual. Nothing is new on the scene. Tomorrow is the end of week 13 of my photophoresis. With 27 treatments under my belt, I will have racked up over $250,000 in treatments costs. Not bad! And when you consider that this will probably extend into November, I'll be pushing over a $500,000 with no end in sight. The physician's assistant keeps insisting that I'm still new in the program and that it's going to take time before noticeable progress can be seen.
Anyway, this is more of an update for my son's condition. He's back at home after being released yesterday afternoon. Do they really know what his issues are? My wife and I think not. But, he is on medication to thin his blood and start to dissolve the clot. However, he also had excess around his lungs that they drained. But the doctors could not collectively agree that there was no problem with what the fluid. One said that there was aproblem while the other said exactly the opposite. So he's at home and we'll just have to wait and see what happens.
Otherwise, my impatience sets in and I wish to get back to some semblance of normalcy. Being tired and weak all the time is not where I want to be. There are things that I wish to do with my life that I just have to postpone because I'm not currently capable of doing them.
At least I have the opportunity to wait...
Bob
I'm doing as well as usual. Nothing is new on the scene. Tomorrow is the end of week 13 of my photophoresis. With 27 treatments under my belt, I will have racked up over $250,000 in treatments costs. Not bad! And when you consider that this will probably extend into November, I'll be pushing over a $500,000 with no end in sight. The physician's assistant keeps insisting that I'm still new in the program and that it's going to take time before noticeable progress can be seen.
Anyway, this is more of an update for my son's condition. He's back at home after being released yesterday afternoon. Do they really know what his issues are? My wife and I think not. But, he is on medication to thin his blood and start to dissolve the clot. However, he also had excess around his lungs that they drained. But the doctors could not collectively agree that there was no problem with what the fluid. One said that there was aproblem while the other said exactly the opposite. So he's at home and we'll just have to wait and see what happens.
Otherwise, my impatience sets in and I wish to get back to some semblance of normalcy. Being tired and weak all the time is not where I want to be. There are things that I wish to do with my life that I just have to postpone because I'm not currently capable of doing them.
At least I have the opportunity to wait...
Bob
August 28, 2011 11:15 PM
The storm that wasn't!
At least for us! I know that there was extensive damage up and down the east coast. Here in New Hampshire, the western part of the state suffered a lot of flooding. Fortunately, where we are, there was little wind and some rain. We never lost electricity - although there are several hundred thousand without electricity in our state. All in all, we were very fortunate.
It's hard to believe that they cancelled school for tomorrow on Friday without waiting to assess what, if any, damage there might be. Tomorrow is suposed to be a beautiful day.
What did we do all day? In anticipation of lots of rain and elevated winds, my wife did not wish to go to church - so we stayed home and played Scrabble all afternoon! Later on, it was movie time on TV.
On to much more parochial interests. They let my son come home from the hospital yesterday. It appears to be premature as he still suffers extreme pain from the blood clot. Tomorrow, he goes for more testing with the expectation that they may resubmit him. They are having problems dissolving the clot which raises our concerns every day. What are the risks that he faces?
As for me, no changes. The lenses basically work as advertised. However, the left one tends to be cloudy while the right one seems to have progressed beyond that point. It seems funny to have my right eye be the good eye when the lenses are in and to have my left eye be the good one when they are removed.
Still no noticeable improvement with the photophoresis results from what I experienced earlier.
Time will tell...
Bob
At least for us! I know that there was extensive damage up and down the east coast. Here in New Hampshire, the western part of the state suffered a lot of flooding. Fortunately, where we are, there was little wind and some rain. We never lost electricity - although there are several hundred thousand without electricity in our state. All in all, we were very fortunate.
It's hard to believe that they cancelled school for tomorrow on Friday without waiting to assess what, if any, damage there might be. Tomorrow is suposed to be a beautiful day.
What did we do all day? In anticipation of lots of rain and elevated winds, my wife did not wish to go to church - so we stayed home and played Scrabble all afternoon! Later on, it was movie time on TV.
On to much more parochial interests. They let my son come home from the hospital yesterday. It appears to be premature as he still suffers extreme pain from the blood clot. Tomorrow, he goes for more testing with the expectation that they may resubmit him. They are having problems dissolving the clot which raises our concerns every day. What are the risks that he faces?
As for me, no changes. The lenses basically work as advertised. However, the left one tends to be cloudy while the right one seems to have progressed beyond that point. It seems funny to have my right eye be the good eye when the lenses are in and to have my left eye be the good one when they are removed.
Still no noticeable improvement with the photophoresis results from what I experienced earlier.
Time will tell...
Bob
August 25, 2011 4:50 PM
Maintaining status quo!
Week 12 of my photophoresis treatments has come to an end. As I balance where I am against others who are currently going through the same treatments, I see that I am doing fairly well and I see that improvement should be on the horizon. Every time a go, a physician's assistant comes by to check my lungs as it is fairly common for graft vs host disease to strike there. I have no such issues.
My regular doctor's appointment on Tuesday did not reveal any news that I did not already know. Any counts that were high were still high - though most of them had come down from previous levels. Therefore I am in the "medical watch" category - not the "medical warning" category to borrow terms used by the weather people on television.
Speaking of that. this weekend we expect to see our first hurricane in 20 years go over us. By the time they get to New Hampshire, they are usually greatly weakened. However, 70 mph winds and heavy rain can still inflict a lot of damage.
We got some disconcerting news regarding my sons condition. His physical recovery from the surgery that he had back in July is going well. However, since he was immobile for an extended period of time, he experienced some pains in his chest and went to the emergency room today. They found a blood clot in his right lung! He was immediately admitted to the hospital to begin a regimen of blood thinners with the expectation that he will come home tomorrow. Let's pray that that happens.
Gotta run as we are off to ballpark to see our local minor league team play tonight...
Bob
Week 12 of my photophoresis treatments has come to an end. As I balance where I am against others who are currently going through the same treatments, I see that I am doing fairly well and I see that improvement should be on the horizon. Every time a go, a physician's assistant comes by to check my lungs as it is fairly common for graft vs host disease to strike there. I have no such issues.
My regular doctor's appointment on Tuesday did not reveal any news that I did not already know. Any counts that were high were still high - though most of them had come down from previous levels. Therefore I am in the "medical watch" category - not the "medical warning" category to borrow terms used by the weather people on television.
Speaking of that. this weekend we expect to see our first hurricane in 20 years go over us. By the time they get to New Hampshire, they are usually greatly weakened. However, 70 mph winds and heavy rain can still inflict a lot of damage.
We got some disconcerting news regarding my sons condition. His physical recovery from the surgery that he had back in July is going well. However, since he was immobile for an extended period of time, he experienced some pains in his chest and went to the emergency room today. They found a blood clot in his right lung! He was immediately admitted to the hospital to begin a regimen of blood thinners with the expectation that he will come home tomorrow. Let's pray that that happens.
Gotta run as we are off to ballpark to see our local minor league team play tonight...
Bob
August 22, 2011 11:10 PM
Well, I did it!
I managed to break one of the lenses. It's not easy to do - but I did it! Each night both lenses must go into a special holder that is inserted into container that has a special wash in it. It's purpose is to sterilize the lenses. I know that there is only one way that the lenses fit into the holder, but, unbeknowst to me, one of them got inverted. When I closed the case, the lens got cracked. Of course, I didn't notice this until this morning when I went to put them in. Now, I have a backup lense for the left eye - but not the right one. Give a guess which one broke!
Fortunately, this happened last night. So, a quick call went out to the Boston Foundation for sight and they agreed to make me a new one that I could pick up later in the day. This we did. Now, I sit with my fingers crossed as to whether or not my insurance company will pay for the new lens as it cost a measly $600.
That was the highlight(lowlight!) of the weekend. Otherwise, I continued to get used to the lenses. Enough so, that they felt fine when I wore them all day on both Saturday and Sunday. No more constantly inserting eyedrops because my eyes were uncomfortable. So the lenses are certainly doing the job in that regard. The cloudiness seems to be dissipating somewhat as well. We'll see how that continues to progress until my next appointment on the 12th.
However, there is still one regarding clarity of vision. The lenses correct to 20/20 at a distance and drug store "cheater" glasses help immensely with close up reading. However, distances of 2 to 4 feet remain blurry in either state. This manifests itself when we play bridge with our friends. I have a great deal of difficulty making out the suits of the cards that have been played. One solution on Saturday night(when I was declarer) was to wear my wife's glasses as they are progressive bifocals and bring all distances into focus. It appears that a new pair of glasses is going to be necessary. This will mean that I will always have to have two pair of glasses with me - one pair when I wear the lenses and a second pair whan I do not(this pair I currently have).
It's taking time for me to grope my way into what the "new normal" is to be. By the way, the lenses work great at the movies, We went to see "The Help" on Saturday(a great movie) and the screen was easy to see - including reading the credits at the end which was giving me a problem before I had the lenses.
All in all, no real complaints which explains why I don't make daily entries anymore as there is not much meaningful information to impart. Tomorrow is my appointment with my primary care physician. It's a routine checkup - though I do get to find out all the wonderful things that the prednisone is doing to me.
Life marches on with a heavy emphasis on the word life...
Bob
I managed to break one of the lenses. It's not easy to do - but I did it! Each night both lenses must go into a special holder that is inserted into container that has a special wash in it. It's purpose is to sterilize the lenses. I know that there is only one way that the lenses fit into the holder, but, unbeknowst to me, one of them got inverted. When I closed the case, the lens got cracked. Of course, I didn't notice this until this morning when I went to put them in. Now, I have a backup lense for the left eye - but not the right one. Give a guess which one broke!
Fortunately, this happened last night. So, a quick call went out to the Boston Foundation for sight and they agreed to make me a new one that I could pick up later in the day. This we did. Now, I sit with my fingers crossed as to whether or not my insurance company will pay for the new lens as it cost a measly $600.
That was the highlight(lowlight!) of the weekend. Otherwise, I continued to get used to the lenses. Enough so, that they felt fine when I wore them all day on both Saturday and Sunday. No more constantly inserting eyedrops because my eyes were uncomfortable. So the lenses are certainly doing the job in that regard. The cloudiness seems to be dissipating somewhat as well. We'll see how that continues to progress until my next appointment on the 12th.
However, there is still one regarding clarity of vision. The lenses correct to 20/20 at a distance and drug store "cheater" glasses help immensely with close up reading. However, distances of 2 to 4 feet remain blurry in either state. This manifests itself when we play bridge with our friends. I have a great deal of difficulty making out the suits of the cards that have been played. One solution on Saturday night(when I was declarer) was to wear my wife's glasses as they are progressive bifocals and bring all distances into focus. It appears that a new pair of glasses is going to be necessary. This will mean that I will always have to have two pair of glasses with me - one pair when I wear the lenses and a second pair whan I do not(this pair I currently have).
It's taking time for me to grope my way into what the "new normal" is to be. By the way, the lenses work great at the movies, We went to see "The Help" on Saturday(a great movie) and the screen was easy to see - including reading the credits at the end which was giving me a problem before I had the lenses.
All in all, no real complaints which explains why I don't make daily entries anymore as there is not much meaningful information to impart. Tomorrow is my appointment with my primary care physician. It's a routine checkup - though I do get to find out all the wonderful things that the prednisone is doing to me.
Life marches on with a heavy emphasis on the word life...
Bob
August 16, 2011 10:10 PM
Improvement!
At least that what it seems like. Both my wife and I feel that the skin on my arms and legs is getting softer. Tomorrow starts week 11 with the photophoresis treatments - so the timeframe is about right to start to show some signs that the treatment is working. Of sourse, even after 11 weeks, it's still somewhat early in the estimation of some of the medical folks.
As for my eyes, I did manage to get the lenses in with only two tries for a second time. But I have to admit that my left eye always seems more difficult than the right one for some reason. As for the cloudiness, there seems to be no rhyme or reason as to why it is better or worse from one day to the next. Some days have been pretty good - I would never say perfect, however, Other days, I am constantly putting in drops to clear them up. On Saturday, I only wore them for an hour because they hurt. But, since then, the pain issue really hasn't surfaced again.
As for my life in general, it's been very quiet. Since we cannot take advantage of the summer weather to do anything because of my treatments and the after effects of being somewhat tired and weak - this summer is going to be somewhat lost with regard to any sort of a vacation or time away. But, the idea is to be able to better enjoy the summers to come and I tyhink that we are on the right track.
All is not lost, however. We still go to church, we still visit friends, we still see the grandchildren, etc. In the long run, those things are far more important than what a vacation can do for you. Maybe I'm just rationalizing here, I don't know.
As I've said before, I've got much to be thankful for and I do realize how blessed I have been throughout this journey because I have seen how so many others have been overtaken by graft vs host disease that they cannot mange to do much of anything.
Up at 5 AM tomorrow - I so look forward to that every Wednesday and Thursday;)
Bob
At least that what it seems like. Both my wife and I feel that the skin on my arms and legs is getting softer. Tomorrow starts week 11 with the photophoresis treatments - so the timeframe is about right to start to show some signs that the treatment is working. Of sourse, even after 11 weeks, it's still somewhat early in the estimation of some of the medical folks.
As for my eyes, I did manage to get the lenses in with only two tries for a second time. But I have to admit that my left eye always seems more difficult than the right one for some reason. As for the cloudiness, there seems to be no rhyme or reason as to why it is better or worse from one day to the next. Some days have been pretty good - I would never say perfect, however, Other days, I am constantly putting in drops to clear them up. On Saturday, I only wore them for an hour because they hurt. But, since then, the pain issue really hasn't surfaced again.
As for my life in general, it's been very quiet. Since we cannot take advantage of the summer weather to do anything because of my treatments and the after effects of being somewhat tired and weak - this summer is going to be somewhat lost with regard to any sort of a vacation or time away. But, the idea is to be able to better enjoy the summers to come and I tyhink that we are on the right track.
All is not lost, however. We still go to church, we still visit friends, we still see the grandchildren, etc. In the long run, those things are far more important than what a vacation can do for you. Maybe I'm just rationalizing here, I don't know.
As I've said before, I've got much to be thankful for and I do realize how blessed I have been throughout this journey because I have seen how so many others have been overtaken by graft vs host disease that they cannot mange to do much of anything.
Up at 5 AM tomorrow - I so look forward to that every Wednesday and Thursday;)
Bob
August 12, 2011 11:00 PM
Very quiet!
But, as I mentioned the other day, I've added my postcard image. That may be the only highlight of the past few days.
On Wednesday, I had an appointment with the glaucoma doctor and everything was fine. I do not have to return until January.
As for the scleral lenses, I find that I am still getting used to putting them in. I have had only the one time where it took me only one try with each eye. For whatever reason, my right eye seems easier to do than my left one. As for the cloudiness, once on a while I have a good day where the cloudiness is not really a problem. I wish I knew what made the difference!
I'm still weak and tired but there is lots of cause for hope as a woman who has 20 weeks under her belt has noticed great improvement with her stamina. I am only half way there, so we'll be going to Boston twice a week into October. It would be great if the number of visits could decrease as the winter approaches.
However, I still cannot complain as I look at others who are undergoing treatment similar to mine. Most are either much younger - such a shame - or have suffered worse side affects than me.
I still enjoy my life with friends and family. That's what counts...
Bob
August 8, 2011 10:45 PM
Time for an update!
Even though there is not an awful lot to be updated, I can comment on a few things. The most relevant is the status of the scleral lenses. The good news is that they definitely improve my distance vision. I even got a replacement left lens on Saturday that does an even better job. However, because the distance is set properly, my close up vision is unacceptable unless I wear a pair of those drugstore "cheater" glasses. It's no big deal. But, without the lenses, I can read close up and see at a distance - even though the distance viewing is not as clear as with the lenses.
The major drawback of the lenses is that they tend to "cloud up". So, even though the vision is 20/20, it is not as crystal clear as it should be. This I'll discuss with the doctor when I go back on the 12th of September. There is, however, the upside to wearing the lenses which is that they do the job regarding keeping my eyes moist. There is less need for eyedrops. Now, the major function that eyedrops perform is to clear up the cloudiness. Maybe what I need is miniature windshield wipers to constantly clean the lenses.
The tiredness and weakness are still there. As I have been told, I'm still a little "early" in the photophoresis process and shouldn't look for any improvement for at least another month. My oncologist has approved continuing the treatment until November. That means twicw a week Boston trips at t least until that time. What fun! When winter starts, it will be more of a concern. We'll cross that bridge when we come to it.
Today, I did get a copy of the postcard featuring me to be used for upcoming October road race in Boston. I'll see what I can do about getting it on this blog. There are 5 of them altogether. I do know one of the other 4. It's really quite exciting.
On Saturday we are supposed to meet the team from Manchester that is running in the San Francisco marathon. I look forward to that as well.
As an aside, Friday was my grandson's 15th birthday. We ate outside at the health club restaurant located in his town. The grandchildren just seem to grow up so fast. In six months, he can drive a car(and he's counting down every last minute). I have no concerns about him, he is a very responsible young man.
It's just nice to be there to see these moments occur...
Bob
Even though there is not an awful lot to be updated, I can comment on a few things. The most relevant is the status of the scleral lenses. The good news is that they definitely improve my distance vision. I even got a replacement left lens on Saturday that does an even better job. However, because the distance is set properly, my close up vision is unacceptable unless I wear a pair of those drugstore "cheater" glasses. It's no big deal. But, without the lenses, I can read close up and see at a distance - even though the distance viewing is not as clear as with the lenses.
The major drawback of the lenses is that they tend to "cloud up". So, even though the vision is 20/20, it is not as crystal clear as it should be. This I'll discuss with the doctor when I go back on the 12th of September. There is, however, the upside to wearing the lenses which is that they do the job regarding keeping my eyes moist. There is less need for eyedrops. Now, the major function that eyedrops perform is to clear up the cloudiness. Maybe what I need is miniature windshield wipers to constantly clean the lenses.
The tiredness and weakness are still there. As I have been told, I'm still a little "early" in the photophoresis process and shouldn't look for any improvement for at least another month. My oncologist has approved continuing the treatment until November. That means twicw a week Boston trips at t least until that time. What fun! When winter starts, it will be more of a concern. We'll cross that bridge when we come to it.
Today, I did get a copy of the postcard featuring me to be used for upcoming October road race in Boston. I'll see what I can do about getting it on this blog. There are 5 of them altogether. I do know one of the other 4. It's really quite exciting.
On Saturday we are supposed to meet the team from Manchester that is running in the San Francisco marathon. I look forward to that as well.
As an aside, Friday was my grandson's 15th birthday. We ate outside at the health club restaurant located in his town. The grandchildren just seem to grow up so fast. In six months, he can drive a car(and he's counting down every last minute). I have no concerns about him, he is a very responsible young man.
It's just nice to be there to see these moments occur...
Bob
August 3, 2011 9:45 PM
Time for an update!
Today was my first visit to my oncologist in three months. The bottom line was to maintain the status quo - keep going with the photophoresis and don't change any of my medications. I did tell him about a swelling that exists in the area of my thyroid gland which he seemed unconcerned about but decided that I should have an MRI anyway. Long story short - we go back in a month to see how the photophoresis is doing and to get the MRI done. Otherwise, he does not feel that anything of concern exists - all my counts are fine.
As for the scleral lenses which I have had for a week, I'm still trying to get the hang of how to put them in efficiently. So far my record is three tries to get them in both eyes - not far off from a perfect two. But, this has happened only three times. Usually, its about six or seven total tries to get them in. If that were the only problem, I could live with it. However, they tend to fog up. So, even though I now have 20/20 vision in both eyes, it's like looking at the world on a London morning. They are coming out with some new lenses that are "new and improved" when it comes to "defogging" so maybe I'll have to go down that path. However, these lenses are still in the experimental state so nothing is guaranteed.
What else is new? Not much. My overall issue with being tired and weak still remains which makes the long walk at the hospital from the car to the photophoresis lab a challenging one. And, it costs me time with the grandchildren. Yesterday, my wife took the oldest two to Canterbury Shaker Village. I had to beg off because there would be no way that I could have kept up with the tour. However, looking at photophoresis patients who have been treated for a while, there is a corner to be turned and you do get back to "normal". I haven't turned that corner yet, but I have no doubt that I will in due time.
Tomorrow, it's up at 5 AM as I complete week nine of my treatments. It's hard to believe that that much time has gone by already.
It's hard to believe that the the two and a half year anniversary of my transplant is in exactly two weeks...
Bob
Today was my first visit to my oncologist in three months. The bottom line was to maintain the status quo - keep going with the photophoresis and don't change any of my medications. I did tell him about a swelling that exists in the area of my thyroid gland which he seemed unconcerned about but decided that I should have an MRI anyway. Long story short - we go back in a month to see how the photophoresis is doing and to get the MRI done. Otherwise, he does not feel that anything of concern exists - all my counts are fine.
As for the scleral lenses which I have had for a week, I'm still trying to get the hang of how to put them in efficiently. So far my record is three tries to get them in both eyes - not far off from a perfect two. But, this has happened only three times. Usually, its about six or seven total tries to get them in. If that were the only problem, I could live with it. However, they tend to fog up. So, even though I now have 20/20 vision in both eyes, it's like looking at the world on a London morning. They are coming out with some new lenses that are "new and improved" when it comes to "defogging" so maybe I'll have to go down that path. However, these lenses are still in the experimental state so nothing is guaranteed.
What else is new? Not much. My overall issue with being tired and weak still remains which makes the long walk at the hospital from the car to the photophoresis lab a challenging one. And, it costs me time with the grandchildren. Yesterday, my wife took the oldest two to Canterbury Shaker Village. I had to beg off because there would be no way that I could have kept up with the tour. However, looking at photophoresis patients who have been treated for a while, there is a corner to be turned and you do get back to "normal". I haven't turned that corner yet, but I have no doubt that I will in due time.
Tomorrow, it's up at 5 AM as I complete week nine of my treatments. It's hard to believe that that much time has gone by already.
It's hard to believe that the the two and a half year anniversary of my transplant is in exactly two weeks...
Bob
July 28, 2011 9:45 PM
Back to 20/20!
Yes, on Tuesday, I got my first pair on scleral lenses to take home and try until tomorrow when I go back again. They are set up for 20/20 distance viewing which means that I need a pair of those marvelous drug store glasses for reading. Not a bad tradeoff when you consider that I have had my right eye issue for about a year at this point.
The major issue is putting them in. You need a special tool to do so because the lenses are hard, they have to be oriented just right, and they are larger than normal contact lenses 18 mm vs 14 mm. Not to worry, they have you go through several training sessions to try to get the knack of it. For someone who has always been fearful of shoving stuff in their eyes, this is quite an about face. After Tuesday's training sessions whereby I had to successfully put them in each eye at least seven times(forget the many failed attempts) my eyes were so red that I thought that the world was covered with ketchup!
Fortunately, you can wear them all day long. But you must take them out at night(it's easy to remove them with another gadget that they give you). However, the past two mornings we had to make our early trip to Boston for my photophoresis treatments which meant that the pressure was on to get the lenses inserted so that we could leave at a reasonable time. It took a while but I did manage to get them in. I took them out for a while this afternoon and reinserted them in both eyes with only three tries - so either I'm improving or I got awful lucky. We'll see tomorrow morning.
What does it all mean? For one, I have more stuff to buy to rinse off the lenses. Because the solution has no preservatives, it can only be used for two days. That's fine except that they give you fairly large size bottles of this stuff and charge a lot for it. You're trapped! Either you buy the stuff or you don't use the lenses - lose/lose! Somebody said that they sell the stuff at the Christmas Tree Shop so we'll check that out tomorrow. Likewise, every night there is a protocol that must be followed to sterilize them for the next day. I guess that it all will become second nature to me and be a part of my "new normal".
Otherwise, when I have the lenses in, my eyes stay moist and I really do not need to constantly douse them with drops all day long. However, they due tend to fog up once in a while, so that the use of eye drops helps to alleviate that problem. Tomorrow's visit should give me my final set of lenses and complete the fitting and training components of the program.
Lastly, today marked the completion of my eighth week of photophoresis treatments which should finally start us all looking for some sort of improvement. So far, there doen't seem to be much change. But I am scheduled for four more weeks and I see my oncologist on Wednsday to determine what's next.
It's been a busy summer driving from one medical appointment to another. I don't think that a medical facility exists within fifty miles of my house that we haven't visited or that a doctor exists in the same area that we haven't seen!
The bottom line is how do I feel? I'm still somewhat tired and weak from the photophoresis treatments. But when I see how others have benefitted from them, I know that this is just a bump in the road. And, my eyesight is back!
As I have said many times before, life is good...
Bob
Yes, on Tuesday, I got my first pair on scleral lenses to take home and try until tomorrow when I go back again. They are set up for 20/20 distance viewing which means that I need a pair of those marvelous drug store glasses for reading. Not a bad tradeoff when you consider that I have had my right eye issue for about a year at this point.
The major issue is putting them in. You need a special tool to do so because the lenses are hard, they have to be oriented just right, and they are larger than normal contact lenses 18 mm vs 14 mm. Not to worry, they have you go through several training sessions to try to get the knack of it. For someone who has always been fearful of shoving stuff in their eyes, this is quite an about face. After Tuesday's training sessions whereby I had to successfully put them in each eye at least seven times(forget the many failed attempts) my eyes were so red that I thought that the world was covered with ketchup!
Fortunately, you can wear them all day long. But you must take them out at night(it's easy to remove them with another gadget that they give you). However, the past two mornings we had to make our early trip to Boston for my photophoresis treatments which meant that the pressure was on to get the lenses inserted so that we could leave at a reasonable time. It took a while but I did manage to get them in. I took them out for a while this afternoon and reinserted them in both eyes with only three tries - so either I'm improving or I got awful lucky. We'll see tomorrow morning.
What does it all mean? For one, I have more stuff to buy to rinse off the lenses. Because the solution has no preservatives, it can only be used for two days. That's fine except that they give you fairly large size bottles of this stuff and charge a lot for it. You're trapped! Either you buy the stuff or you don't use the lenses - lose/lose! Somebody said that they sell the stuff at the Christmas Tree Shop so we'll check that out tomorrow. Likewise, every night there is a protocol that must be followed to sterilize them for the next day. I guess that it all will become second nature to me and be a part of my "new normal".
Otherwise, when I have the lenses in, my eyes stay moist and I really do not need to constantly douse them with drops all day long. However, they due tend to fog up once in a while, so that the use of eye drops helps to alleviate that problem. Tomorrow's visit should give me my final set of lenses and complete the fitting and training components of the program.
Lastly, today marked the completion of my eighth week of photophoresis treatments which should finally start us all looking for some sort of improvement. So far, there doen't seem to be much change. But I am scheduled for four more weeks and I see my oncologist on Wednsday to determine what's next.
It's been a busy summer driving from one medical appointment to another. I don't think that a medical facility exists within fifty miles of my house that we haven't visited or that a doctor exists in the same area that we haven't seen!
The bottom line is how do I feel? I'm still somewhat tired and weak from the photophoresis treatments. But when I see how others have benefitted from them, I know that this is just a bump in the road. And, my eyesight is back!
As I have said many times before, life is good...
Bob
July 24, 2011 11:05 PM
Lunch with the other "parents"!
We went out to lunch today with the people who had our dog for his last two and a half years. They are nice people and confirmed agian that we made the right choice as to who should take care of him in his final years. Of course we talked about his life, his foibles, and his love. Without the latter, he would have been a dickens of a dog to contend with because he got into and chewed everything from the day he was born until the day he died. But he overcame all of that with his love and will always be fondly remembered.
After the Norway bombing this week, I e-mailed the woman who lives there and was a bone marrow donor and came here as part of my "coming out" party in February 2010 for my 1 year anniversary. Though her family does not live in Oslo, you never know if thety could have traveled to the city for the day. Fortunately, everyone is OK. It's a small world(a Disney World favorite ride!). To think that I would actually know somebody in Norway to be concerned about!
None of that would have happened without this blog. Again, another blessing from this disease.
This week, it's more photophoresis and round one of getting my new scleral lenses! That begins on Tuesday. I'm looking forward to it because it gets my vision back to 20/20 and, hopefully, diminishes my need for so many eyedrops and solutions during the day. But, there is no such thing as a free lunch. The care and feeding of these special lenses are quite involved in an effort to keep the disinfected and to keep my eyes from getting infected. However, if others can do it, there should be no reason why I cannot.
The secret is to take it one day at a time...
Bob
We went out to lunch today with the people who had our dog for his last two and a half years. They are nice people and confirmed agian that we made the right choice as to who should take care of him in his final years. Of course we talked about his life, his foibles, and his love. Without the latter, he would have been a dickens of a dog to contend with because he got into and chewed everything from the day he was born until the day he died. But he overcame all of that with his love and will always be fondly remembered.
After the Norway bombing this week, I e-mailed the woman who lives there and was a bone marrow donor and came here as part of my "coming out" party in February 2010 for my 1 year anniversary. Though her family does not live in Oslo, you never know if thety could have traveled to the city for the day. Fortunately, everyone is OK. It's a small world(a Disney World favorite ride!). To think that I would actually know somebody in Norway to be concerned about!
None of that would have happened without this blog. Again, another blessing from this disease.
This week, it's more photophoresis and round one of getting my new scleral lenses! That begins on Tuesday. I'm looking forward to it because it gets my vision back to 20/20 and, hopefully, diminishes my need for so many eyedrops and solutions during the day. But, there is no such thing as a free lunch. The care and feeding of these special lenses are quite involved in an effort to keep the disinfected and to keep my eyes from getting infected. However, if others can do it, there should be no reason why I cannot.
The secret is to take it one day at a time...
Bob
July 22, 12:10 AM
The only show in town!
Today marked a first for me as I was the only one getting a photophoresis treatment this morning. It was really quiet. The upside, of course, was the individualized treatment that I got. It makes you feel really special when you have four nurses crowding around you looking for something to do.
It's been seven weeks now and I can't say that I've found any real major changes to indicate that the treatment is working. As I said before, they use eight weeks as the starting point. So we'll see what happens.
Tonight we got to watch two of my granddaughters perform in a show at our local live performance theater in Manchester. It was the culmination of their two week camp at the theater and it really was a well done performance for children who are basically pre-teen and who have had on 9 days to rehearse for it. The two girls did really well. Maybe we have another Miley Cyrus(or two) in our midst!
Talking with the girls after the show, they were so animated and full of viatality as they discussed all the things that they want to do in life - play World Cup level soccer, go to college, start their own restaurant business, etc. I'm not sure how much of that I will be able to see, but it's great to see that they have dreams and goals and gives all of us a focus for the future as we strive to help them achieve their ambitions. It's especially significant when you realize that just over four years ago one of them coded twice and almost died. Living on borrowed time for me is nothing like the borrowed time that my granddaughter is enjoying. She is a remarkable child in many ways. One can only assume that God has a fantastic plan for this young lady.
It will be quiet for a few days until Tuesday when I go for round two of the scleral lens regimen. Meanwhile, there is nothing for me to do other than to practice opening my eyelids so that I can fit the devices(their word - not mine) in my eyes each and every time.
No rising at 5 AM Friday morning. Thank God...
Bob
Today marked a first for me as I was the only one getting a photophoresis treatment this morning. It was really quiet. The upside, of course, was the individualized treatment that I got. It makes you feel really special when you have four nurses crowding around you looking for something to do.
It's been seven weeks now and I can't say that I've found any real major changes to indicate that the treatment is working. As I said before, they use eight weeks as the starting point. So we'll see what happens.
Tonight we got to watch two of my granddaughters perform in a show at our local live performance theater in Manchester. It was the culmination of their two week camp at the theater and it really was a well done performance for children who are basically pre-teen and who have had on 9 days to rehearse for it. The two girls did really well. Maybe we have another Miley Cyrus(or two) in our midst!
Talking with the girls after the show, they were so animated and full of viatality as they discussed all the things that they want to do in life - play World Cup level soccer, go to college, start their own restaurant business, etc. I'm not sure how much of that I will be able to see, but it's great to see that they have dreams and goals and gives all of us a focus for the future as we strive to help them achieve their ambitions. It's especially significant when you realize that just over four years ago one of them coded twice and almost died. Living on borrowed time for me is nothing like the borrowed time that my granddaughter is enjoying. She is a remarkable child in many ways. One can only assume that God has a fantastic plan for this young lady.
It will be quiet for a few days until Tuesday when I go for round two of the scleral lens regimen. Meanwhile, there is nothing for me to do other than to practice opening my eyelids so that I can fit the devices(their word - not mine) in my eyes each and every time.
No rising at 5 AM Friday morning. Thank God...
Bob
July 18, 2011 11:55 PM
A look at the future!
Today was the first of my scleral lens appointments. It involved some fitting time(for comfort) and getting some readings for vision correction. I wore a "practice" pair of lenses for about an hour. But they were not the proper prescription so my vision was blurry. However, it was possible to correct my vision to 20:20 including my right eye which has the scar on it from the cornea injury that I got somewhere along the way. It was interesting to hear from the doctor that I should have felt some pain whenever the injury occurred - but, quite honestly, I never felt any pain at any time. Currrently, I have a little spot on my left eye now that needs attention. My doctor, once again, said that I should feel some pain - but, here again, it's not happening.
I also underwent my first training session for inserting and removing the lenses from my eyes. With the left eye issue, we only worked on the right eye. It's going to take a while to get used to putting them in and taking them out because it's not done like regular contacts. You have special devices to assist you in the process. More importantly, you must open your eyes quite wide because the lenses are bigger than normal contact lenses. I succeeded a few times once I got used to stuffing something into my eye which took a few minutes to get used to. I thought that that would be the big issue. However, the issue is that I must open my eye more fully to allow for room to properly insert the lens. Next Tuesday the process continues with the first crack at lenses that have been designed for me.
Needless to say, with my left eye issue, I got more drops and ointments for my eyes. I don't think that there is an eye product out there that I don't use! However, if all goes well here, I get back to 20:20 vision and I won't need to wear glasses. I'm looking forward to it.
Meanwhile, snother small concilation is that fact that on August 1st the cost for all of this goes from $7600 to $10000! Lucky me! I got in just under the wire.
Our weekend was great with our friends from New York. We do what older folks do - eat, watch movies, and shop! But it is always fun to catch up with what's going on in other's lives and allow them the time to do the same with you.Come October, we plan to go back down there.
Wednesday starts week 7 of the photophoresis treatments and we should begin to start to look to see if there is any improvement. It's hard to believe that 6 weeks have already come and gone. Time seems to fly so fast, in another month it will be two and half years since my bone marrow transplant.
It's been two and a half years that I would not have had otherwise - maybe that's why it seems to fly by so fast.
I am grateful for each day and what it brings.
Life is good...
Bob
Today was the first of my scleral lens appointments. It involved some fitting time(for comfort) and getting some readings for vision correction. I wore a "practice" pair of lenses for about an hour. But they were not the proper prescription so my vision was blurry. However, it was possible to correct my vision to 20:20 including my right eye which has the scar on it from the cornea injury that I got somewhere along the way. It was interesting to hear from the doctor that I should have felt some pain whenever the injury occurred - but, quite honestly, I never felt any pain at any time. Currrently, I have a little spot on my left eye now that needs attention. My doctor, once again, said that I should feel some pain - but, here again, it's not happening.
I also underwent my first training session for inserting and removing the lenses from my eyes. With the left eye issue, we only worked on the right eye. It's going to take a while to get used to putting them in and taking them out because it's not done like regular contacts. You have special devices to assist you in the process. More importantly, you must open your eyes quite wide because the lenses are bigger than normal contact lenses. I succeeded a few times once I got used to stuffing something into my eye which took a few minutes to get used to. I thought that that would be the big issue. However, the issue is that I must open my eye more fully to allow for room to properly insert the lens. Next Tuesday the process continues with the first crack at lenses that have been designed for me.
Needless to say, with my left eye issue, I got more drops and ointments for my eyes. I don't think that there is an eye product out there that I don't use! However, if all goes well here, I get back to 20:20 vision and I won't need to wear glasses. I'm looking forward to it.
Meanwhile, snother small concilation is that fact that on August 1st the cost for all of this goes from $7600 to $10000! Lucky me! I got in just under the wire.
Our weekend was great with our friends from New York. We do what older folks do - eat, watch movies, and shop! But it is always fun to catch up with what's going on in other's lives and allow them the time to do the same with you.Come October, we plan to go back down there.
Wednesday starts week 7 of the photophoresis treatments and we should begin to start to look to see if there is any improvement. It's hard to believe that 6 weeks have already come and gone. Time seems to fly so fast, in another month it will be two and half years since my bone marrow transplant.
It's been two and a half years that I would not have had otherwise - maybe that's why it seems to fly by so fast.
I am grateful for each day and what it brings.
Life is good...
Bob
July 15, 2011 11:00 AM
Ouch!
Yesterday's photophoresis session was a little out of the ordinary in the fact that the nurse initially missed my vein and they had to go probing around with the needle. As you can imagine, it was a little uncomfortable while they manipulated that needle in search of my vein. Even at the end when they removed it, my arm was sore when they put on the bandage. Admittedly, the nurse apologized for the incident but it still didn't ease the physical pain. It's the first time that anyone has had any problems so I can't really complain.
Good news on another front! On Monday, I start with the first of three appointments for my scleral lenses. We'll see how that goes(pardon the pun). They are nicely working around my Wednesday and Thursday photophoresis appointments thus tying up lust about every day over the next two weeks. These appointments are all day affairs so you do not leave until 4 in the afternoon - just when commuter traffic gets underway. Ugh! Fortunately, through health insurance and the generosity of our local Lion's Club, it's all paid for. As you can imagine, as with everything I seem to get involved in, it's expensive. As my wife says, add it all up and I'm becoming the six million dollar man!
Today, friends from New York are coming for a few days. We're looking forward to that. It's nice to touch base and the change of pace will do us good! I just feel a little guilty in that, in my current condition, I can't assist more. However, the goal is that this, too, shall pass and that's what we look forward to.
So, the net result will be that, by the end of the summer, I expect to see improvement in several areas. Not that I'm wishing the time and all that good weather away, mind you. I like summer even though I cannot have much exposure to the sun. The warm weather, the beautiful flowers, the images of life all around you - summer is so much better than the cold reality of winter.
Thank God I can still experience them all...
Bob
Yesterday's photophoresis session was a little out of the ordinary in the fact that the nurse initially missed my vein and they had to go probing around with the needle. As you can imagine, it was a little uncomfortable while they manipulated that needle in search of my vein. Even at the end when they removed it, my arm was sore when they put on the bandage. Admittedly, the nurse apologized for the incident but it still didn't ease the physical pain. It's the first time that anyone has had any problems so I can't really complain.
Good news on another front! On Monday, I start with the first of three appointments for my scleral lenses. We'll see how that goes(pardon the pun). They are nicely working around my Wednesday and Thursday photophoresis appointments thus tying up lust about every day over the next two weeks. These appointments are all day affairs so you do not leave until 4 in the afternoon - just when commuter traffic gets underway. Ugh! Fortunately, through health insurance and the generosity of our local Lion's Club, it's all paid for. As you can imagine, as with everything I seem to get involved in, it's expensive. As my wife says, add it all up and I'm becoming the six million dollar man!
Today, friends from New York are coming for a few days. We're looking forward to that. It's nice to touch base and the change of pace will do us good! I just feel a little guilty in that, in my current condition, I can't assist more. However, the goal is that this, too, shall pass and that's what we look forward to.
So, the net result will be that, by the end of the summer, I expect to see improvement in several areas. Not that I'm wishing the time and all that good weather away, mind you. I like summer even though I cannot have much exposure to the sun. The warm weather, the beautiful flowers, the images of life all around you - summer is so much better than the cold reality of winter.
Thank God I can still experience them all...
Bob
July 13, 2011 11:45 PM
$10,000!
We got our first statements for the photophoresis treatments that I am undergoing and saw that EACH visit cost just over $10,000! Since I already have 12 under my belt and, at least, another 13 to go - this is going to be a costly venture. Thank God for medical insurance! And, to think, there are people there who have done this for years!
Upon looking at that, my wife and I thought that it would be a good idea to buy a couple of machines for our basement and start giving the treatments ourselves. What a money maker! The set up cost is only $1,200 per visit so there's a hefty profit to be made even when other expenses(such as liability insurance, trained help, etc.) are factored in.
Otherwise, a quiet two days withour usual trip to Boston this morning with the second one coming up tomorrow morning. Getting up at 5 AM is no pleasure but it beats fighting evening commuter traffic going home by a long shot.
As for my son, he goes for surgery on Friday to fix his ruptured quad. For this week, he has figured out a way to drive so he has driven himself to work every day. Even though he can't move his knee, he can still move his foot so that he can properly drive. The doctor said that evryone in his situation adjusts and comes up with a way to drive. After the surgery, he will most certainly be out of commission for a while as he will not be able to flex his knee at all.
Still feeling the same. The eyes seem to have stabilized with some days being a little better than others. This is good news because there really are times when I don't think about them at all. As for being somewhat tired and weak, that's par for the course and won't go away for a while. Meanwhile, I still get around and do what needs to be done. As the saying goes for all of us, "You do what you have to do." Not as catchy as "Live Fee or Die" (our state's motto), but it is more personal.
Gotta go, 5 AM comes up real quick...
Bob
We got our first statements for the photophoresis treatments that I am undergoing and saw that EACH visit cost just over $10,000! Since I already have 12 under my belt and, at least, another 13 to go - this is going to be a costly venture. Thank God for medical insurance! And, to think, there are people there who have done this for years!
Upon looking at that, my wife and I thought that it would be a good idea to buy a couple of machines for our basement and start giving the treatments ourselves. What a money maker! The set up cost is only $1,200 per visit so there's a hefty profit to be made even when other expenses(such as liability insurance, trained help, etc.) are factored in.
Otherwise, a quiet two days withour usual trip to Boston this morning with the second one coming up tomorrow morning. Getting up at 5 AM is no pleasure but it beats fighting evening commuter traffic going home by a long shot.
As for my son, he goes for surgery on Friday to fix his ruptured quad. For this week, he has figured out a way to drive so he has driven himself to work every day. Even though he can't move his knee, he can still move his foot so that he can properly drive. The doctor said that evryone in his situation adjusts and comes up with a way to drive. After the surgery, he will most certainly be out of commission for a while as he will not be able to flex his knee at all.
Still feeling the same. The eyes seem to have stabilized with some days being a little better than others. This is good news because there really are times when I don't think about them at all. As for being somewhat tired and weak, that's par for the course and won't go away for a while. Meanwhile, I still get around and do what needs to be done. As the saying goes for all of us, "You do what you have to do." Not as catchy as "Live Fee or Die" (our state's motto), but it is more personal.
Gotta go, 5 AM comes up real quick...
Bob
July 12, 2011 12:15 AM
Many thanks to my daughter!
Having been made aware of the Tufts 10K road race coming up this fall and being aware of my part in the postcard marketing campaign, one of my daughters has decided that she will actually run in the race! The effort is to collect donations for the Leukemia and Lymphoma Society which supports blood cancer patients in a wide variety of ways. Each runner needs sponsors in order to be able to compete.
My daughter has crafted the following e-mail message that explains her efforts and what is involved.
"I am raising funds fo the Leukemia and Lymphoma Society(LLS) as a participant in their Team in Training program and I'm asking you to help by making a donation to my fundraising campaign.
Of course, this is in homor of my dad, Robert Johnson, who is almost a three year survivor! He has been asked to participate whereby his picture and story will be used to promote this raceand to personalize that blood cancer happens to real people! I sure can attest to that!
Please use the link in this email to donate online quickly and securely plus learn more about my program. You will receive a confirmation of your donation by email and I will be notified as soon as you make your donation.
http://pages.teamintraining.org/ms/tufts10k11/jparkhurst
Each donation helps accelerate finding a cure for leukemia, lymphoma, and myeloma. Nearly 958,000 Americans are battling these blood cancers. I am hoping that my participation in Team in Training will help bring them hope and support.
On behalf of The Leukemia and Lymphoma Society, thank you very much for your support. I greatly appreciate your generosity.
Thank You,
Jennifer Parkhurst"
Your donation will not directly benefit me in any way but will benefit many other future victims of blood cancer diseases and will make my daughter's efforts all the more worthwhile.
If you feel so inclined to contribute in any way, I also thank you...
Bob
Having been made aware of the Tufts 10K road race coming up this fall and being aware of my part in the postcard marketing campaign, one of my daughters has decided that she will actually run in the race! The effort is to collect donations for the Leukemia and Lymphoma Society which supports blood cancer patients in a wide variety of ways. Each runner needs sponsors in order to be able to compete.
My daughter has crafted the following e-mail message that explains her efforts and what is involved.
"I am raising funds fo the Leukemia and Lymphoma Society(LLS) as a participant in their Team in Training program and I'm asking you to help by making a donation to my fundraising campaign.
Of course, this is in homor of my dad, Robert Johnson, who is almost a three year survivor! He has been asked to participate whereby his picture and story will be used to promote this raceand to personalize that blood cancer happens to real people! I sure can attest to that!
Please use the link in this email to donate online quickly and securely plus learn more about my program. You will receive a confirmation of your donation by email and I will be notified as soon as you make your donation.
http://pages.teamintraining.org/ms/tufts10k11/jparkhurst
Each donation helps accelerate finding a cure for leukemia, lymphoma, and myeloma. Nearly 958,000 Americans are battling these blood cancers. I am hoping that my participation in Team in Training will help bring them hope and support.
On behalf of The Leukemia and Lymphoma Society, thank you very much for your support. I greatly appreciate your generosity.
Thank You,
Jennifer Parkhurst"
Your donation will not directly benefit me in any way but will benefit many other future victims of blood cancer diseases and will make my daughter's efforts all the more worthwhile.
If you feel so inclined to contribute in any way, I also thank you...
Bob
July 8, 2011 10:45 PM
15 minutes and growing!
Andy Warhol's claim that everyone gets 15 minutes of fame seems to be extending itself for me. I have received 3 e-mails recently asking for my participation in various events...
The first concerns my being willing to have my story and photo featured along the golf course at the Elbit Systems Light The Night Golf Tournament. They plan on having me be one of ten people to be featured. The idea is to take the issue of blood cancer and personalize it for the golfers.
The second involves my being a "Patient Ambassabor" as part of the Team in Training project for two New Hampshire women who are running in the NIKE Woman's Marathon in San Francisco. Again, it involves my sharing my story with them and attending one practice at the end of their training. (I hope that they are not looking for me to keep up with them during their practice - walking on a treadmill isn't quite the same kind of training that they do!). Similar to the golf event, it personalizes blood cancer and gives them another purpose for running.
Lastly, I have been asked to be part of another Team in Training project whereby my photo and story would be part of a postcard project. A graphic designer is going to create postcards as part of the marketing for the Tufts 10K running event coming in the fall. The postcards will be mailed, handed out, and placed in race bags for the runners. Again, the purpose is to personalize blood cancer and help the runners realize that they are raising money for "real people".
I find this all very ironic as I have never really been an athlete. Golfing and running are most certainly not my favorite activities. Bowling is about as strenuous as it ever got for me. Today, the most exercise that I get is dealing cards when we play bridge. But, in truth, I am honored to do it and my initial thought at the beginning of all of this that there was a greater purpose for my contracting leukemia seems to be bearing fruit. I can't and I won't say no because if there is anything that I can do to help others who have contracted some type of blood cancer - count me in.
My journey always seems to be taking new and wonderful turns into a life that I never would have imagined just three short years ago.
A life that I can't imagine being any other way today...
Bob
Andy Warhol's claim that everyone gets 15 minutes of fame seems to be extending itself for me. I have received 3 e-mails recently asking for my participation in various events...
The first concerns my being willing to have my story and photo featured along the golf course at the Elbit Systems Light The Night Golf Tournament. They plan on having me be one of ten people to be featured. The idea is to take the issue of blood cancer and personalize it for the golfers.
The second involves my being a "Patient Ambassabor" as part of the Team in Training project for two New Hampshire women who are running in the NIKE Woman's Marathon in San Francisco. Again, it involves my sharing my story with them and attending one practice at the end of their training. (I hope that they are not looking for me to keep up with them during their practice - walking on a treadmill isn't quite the same kind of training that they do!). Similar to the golf event, it personalizes blood cancer and gives them another purpose for running.
Lastly, I have been asked to be part of another Team in Training project whereby my photo and story would be part of a postcard project. A graphic designer is going to create postcards as part of the marketing for the Tufts 10K running event coming in the fall. The postcards will be mailed, handed out, and placed in race bags for the runners. Again, the purpose is to personalize blood cancer and help the runners realize that they are raising money for "real people".
I find this all very ironic as I have never really been an athlete. Golfing and running are most certainly not my favorite activities. Bowling is about as strenuous as it ever got for me. Today, the most exercise that I get is dealing cards when we play bridge. But, in truth, I am honored to do it and my initial thought at the beginning of all of this that there was a greater purpose for my contracting leukemia seems to be bearing fruit. I can't and I won't say no because if there is anything that I can do to help others who have contracted some type of blood cancer - count me in.
My journey always seems to be taking new and wonderful turns into a life that I never would have imagined just three short years ago.
A life that I can't imagine being any other way today...
Bob
July 6, 2011 11:15 PM
I won't grow up!
Not me, my son. Every summer he plays softball. This summer he added lacrosse to the mix. So, last night he notified us that his lacrosse game was at our town high school. We went to watch him play. He plays goalie - how can he get hurt? Well, he went down on one knee and bent it too far an ruptured a quad! In a men's over 40 lacrosse league game! Each team is allowed two ringers to play who are under 40 and he was one of them.
As you can guess, mom and dad took him to the hospital and tomorrow he goes to see an orthopedic doctor to get a better determination of his situation. He's on crutches, of course. And, the leg he damaged is his right leg, so that driving does not appear to be an option either. It was an unfortunate turn of events but, when men play boys games, injuries always seem to ensue. But that only happens to "other people" and not to ourselves! Sounds familiar to me as well.
On that note, the first of the two weekly photophoresis visits always includes a CBC blood count update. Looking at today's numbers, I noticed that my hematocrit and hemoglobin have been steadily declining. There is a doctor who comes around and visits each of us while we are there. I asked her about this. She said that the procedure does not return all of the red blood cells that are drawn, thus leading to the change in the numbers. What is supposed to happen is that the body, seeing that decline, begins to ramp up the production of new ones. This takes a while and should not be visible until the 7th or 8th weeks. This is week 5 for me.
Meanwhile, because of the lower counts, I feel more tired than usual and weaker as well. Climbing stairs is more of a chore. I have to admit that I was getting concerned about this as I was told that there were no side effects from photophoresis. Now I am not worried. I can continue my daily activities but I just have to take it somewhat slower. Actually, I have no choice! My body won't let me function at "full speed" as of yet. "Full speed", at my age, means that I can climb a flight of stairs and chew gum at the same time , that I can carry a load of laundry that consists of more than a pair of socks, and that I can outpace anyone who utilizes a walker.
As with everything, this too, shall pass...
Bob
Not me, my son. Every summer he plays softball. This summer he added lacrosse to the mix. So, last night he notified us that his lacrosse game was at our town high school. We went to watch him play. He plays goalie - how can he get hurt? Well, he went down on one knee and bent it too far an ruptured a quad! In a men's over 40 lacrosse league game! Each team is allowed two ringers to play who are under 40 and he was one of them.
As you can guess, mom and dad took him to the hospital and tomorrow he goes to see an orthopedic doctor to get a better determination of his situation. He's on crutches, of course. And, the leg he damaged is his right leg, so that driving does not appear to be an option either. It was an unfortunate turn of events but, when men play boys games, injuries always seem to ensue. But that only happens to "other people" and not to ourselves! Sounds familiar to me as well.
On that note, the first of the two weekly photophoresis visits always includes a CBC blood count update. Looking at today's numbers, I noticed that my hematocrit and hemoglobin have been steadily declining. There is a doctor who comes around and visits each of us while we are there. I asked her about this. She said that the procedure does not return all of the red blood cells that are drawn, thus leading to the change in the numbers. What is supposed to happen is that the body, seeing that decline, begins to ramp up the production of new ones. This takes a while and should not be visible until the 7th or 8th weeks. This is week 5 for me.
Meanwhile, because of the lower counts, I feel more tired than usual and weaker as well. Climbing stairs is more of a chore. I have to admit that I was getting concerned about this as I was told that there were no side effects from photophoresis. Now I am not worried. I can continue my daily activities but I just have to take it somewhat slower. Actually, I have no choice! My body won't let me function at "full speed" as of yet. "Full speed", at my age, means that I can climb a flight of stairs and chew gum at the same time , that I can carry a load of laundry that consists of more than a pair of socks, and that I can outpace anyone who utilizes a walker.
As with everything, this too, shall pass...
Bob
July 4, 2011 11:45 PM
Happy 4th to all!
It was a bittersweet weekend for us. Yesterday, upon returning home in the morning and opening our mail, we learned that our dog that we had given away two and a half years ago had to be put down this past week. Even though we had not seen him over that time span, his new owners had constantly updated us with pictures so that we were still considered to be "surrogate" parents.
But, more to the point, we knew that we had chosen the right people to take care of him when thay returned the check that we sent monthly to pay for his shot for his Addison's Disease which he has had for the past seven years. They have been wonderful to him and, in his own way, he was wonderful to them as well. They are heartbroken just as we are; but, you have to look at all the positives over the years as you knew that eventually the day would come when he would no longer be around. Tomorrow would have been his eleventh birthday.
To celebrate his life and love we have decided to take that last check and use the money to go out to dinner at the restaurant at Canterbury Shaker Village where they frequently went to walk with him. Regis' life has come and gone(I can't cry, but I'm still emotionally upset by the news) and left us with many stories and memories. Our friendship with his other owners has blossomed and continues to grow. There is always a silver lining somewhere in that black cloud.
The rest of the day yesterday was great as we spent it a July 4th(3rd) party given by the brother of a friend of ours. He does this every year but that has been the first time in four years that we have been able to make it. The opportunity to connect with peopl ethat we haven't seen for a while was wonderful and gave us a chance to somewhat forget about the earlier news that we had received. Fine people, fine food, and fine weather - the recipe for a perfect day and fond memories.
Today was a relaxing day spent here at home and then, later in the day, we had a friend over for a simple barbecue, some wine, and some chit chat. A fine way for people of our age to celebrate our country's birthday.
Certainly not a "quiet" weekend with fireworks going on all around us. However, it's another holiday that I've had the opportunity to see. Each day is a blessing in its own way and I thank God that I'm able to be able to say(check that, write) that.
God bless America...
Bob
It was a bittersweet weekend for us. Yesterday, upon returning home in the morning and opening our mail, we learned that our dog that we had given away two and a half years ago had to be put down this past week. Even though we had not seen him over that time span, his new owners had constantly updated us with pictures so that we were still considered to be "surrogate" parents.
But, more to the point, we knew that we had chosen the right people to take care of him when thay returned the check that we sent monthly to pay for his shot for his Addison's Disease which he has had for the past seven years. They have been wonderful to him and, in his own way, he was wonderful to them as well. They are heartbroken just as we are; but, you have to look at all the positives over the years as you knew that eventually the day would come when he would no longer be around. Tomorrow would have been his eleventh birthday.
To celebrate his life and love we have decided to take that last check and use the money to go out to dinner at the restaurant at Canterbury Shaker Village where they frequently went to walk with him. Regis' life has come and gone(I can't cry, but I'm still emotionally upset by the news) and left us with many stories and memories. Our friendship with his other owners has blossomed and continues to grow. There is always a silver lining somewhere in that black cloud.
The rest of the day yesterday was great as we spent it a July 4th(3rd) party given by the brother of a friend of ours. He does this every year but that has been the first time in four years that we have been able to make it. The opportunity to connect with peopl ethat we haven't seen for a while was wonderful and gave us a chance to somewhat forget about the earlier news that we had received. Fine people, fine food, and fine weather - the recipe for a perfect day and fond memories.
Today was a relaxing day spent here at home and then, later in the day, we had a friend over for a simple barbecue, some wine, and some chit chat. A fine way for people of our age to celebrate our country's birthday.
Certainly not a "quiet" weekend with fireworks going on all around us. However, it's another holiday that I've had the opportunity to see. Each day is a blessing in its own way and I thank God that I'm able to be able to say(check that, write) that.
God bless America...
Bob
July 1, 2011 10:30PM
The circle of life in operation!
We are back at the lake until Sunday when we have another party to go to. Anyway, it is the first time that we have been here without my mother-in-law who passed away in January. Now, as my wife says, we are the patriarch and matriarch of the group that is here. It seems hard to imagine that we have come this far in life that we are now the "old folks". But, that is how life goes and there is nothing that we can do about it except be thankful that we are still here to enjoy it. I have to admit that it is not the same with my mother-in-law not being here.
We always enjoy the lake and the time to be with family and to see the grandchildren enjoy themselves. We got here today for lunch, played cards, and awaited the arrival of the rest of the clan.
Not much to talk about. A rather typical week with two more photophoresis treatments. So far so good with the bathroom issue - I've not had to visit once while I've been hooked up. I have to admit that after three hours it's been a fairly close call. Yesterday's drive home was lengthened because Michelle Obama was in Boston and they stopped traffic for half an hour! Why couldn't they just helicopter her to her destination and spare all of us the aggravation.
On Tuesday night, my choir director gave me a one-on-one singing lesson that I am going to have to work on in preparation for the fall startup. It lasted 45 minutes and, believe me, it was well worth it. People pay good money for such lessons and four of us got them for free! Maybe the four of us were the most in need of such tutoring. That's another way to look at it.
So, a quiet week has brought us to the lake to enjoy the beautiful weather and each other's company.
Another event to be thankful for...
Bob
We are back at the lake until Sunday when we have another party to go to. Anyway, it is the first time that we have been here without my mother-in-law who passed away in January. Now, as my wife says, we are the patriarch and matriarch of the group that is here. It seems hard to imagine that we have come this far in life that we are now the "old folks". But, that is how life goes and there is nothing that we can do about it except be thankful that we are still here to enjoy it. I have to admit that it is not the same with my mother-in-law not being here.
We always enjoy the lake and the time to be with family and to see the grandchildren enjoy themselves. We got here today for lunch, played cards, and awaited the arrival of the rest of the clan.
Not much to talk about. A rather typical week with two more photophoresis treatments. So far so good with the bathroom issue - I've not had to visit once while I've been hooked up. I have to admit that after three hours it's been a fairly close call. Yesterday's drive home was lengthened because Michelle Obama was in Boston and they stopped traffic for half an hour! Why couldn't they just helicopter her to her destination and spare all of us the aggravation.
On Tuesday night, my choir director gave me a one-on-one singing lesson that I am going to have to work on in preparation for the fall startup. It lasted 45 minutes and, believe me, it was well worth it. People pay good money for such lessons and four of us got them for free! Maybe the four of us were the most in need of such tutoring. That's another way to look at it.
So, a quiet week has brought us to the lake to enjoy the beautiful weather and each other's company.
Another event to be thankful for...
Bob
June 27, 2011 11:00 AM
Time for a weekend recap!
I forgot to mention an unplanned highlight from our ballpark tour on Friday night. We encountered a scout from the San Francisco Giants. So what, you say! Well, if you recall, the Giants won the World Series last fall. What does that mean? Well, it means that the scout was sporting the World Series Championship ring that the Giants gave to all their players and staff. What a sight! It was huge! And, of course, he was very proud of it - especially after having been with the organization for 37 years. That was a special treat! I had never seen a championship ring before.
On Sunday, I made my "first connection" call - speaking to a woman in North Dakota for two hours. It's tough for some of these people because the path forward is not always clear cut. Options are presented in various ways and decisions have to be made. Obviously, making the wrong ones can have devastating results. I was fortunate(!) in that I really had no choice with what I had to do so there were no real decisions to make. Of course, I can't tell anyone what to do but I can suggest that they seek additional input from various sources in order to assist them in the process. Even with her predicament, this woman was very upbeat and positive and I find that so uplifting for myself as well.
One of my daughters sponsored a cosmetics party on Saturday run by a woman who donates all of the proceeds to our local Lions Club that uses them to help people with eye issues. I spent the day there talking with people and met a friend of my daughters whose 12 year old son was stricken with a blood cancer disease two years ago. She has had to devote her time to getting him back to "normal" ever since. We shared war stories. However, it is hard for me to project my story onto his as a child's life differs so much from mine. Why me, peer pressure, and other elements come into play that I did not have to directly face. It's especially tough for children and their families.
Are the photophoresis treatments working? The answer is a definite maye even though it is still early in the program. I used to get cramps in my legs at night - that does not happen anymore. Have there been other improvements? I think that it's a little too early to tell but, most certainly, there has not been an detrimental side effects.
So far, so good...
Bob
I forgot to mention an unplanned highlight from our ballpark tour on Friday night. We encountered a scout from the San Francisco Giants. So what, you say! Well, if you recall, the Giants won the World Series last fall. What does that mean? Well, it means that the scout was sporting the World Series Championship ring that the Giants gave to all their players and staff. What a sight! It was huge! And, of course, he was very proud of it - especially after having been with the organization for 37 years. That was a special treat! I had never seen a championship ring before.
On Sunday, I made my "first connection" call - speaking to a woman in North Dakota for two hours. It's tough for some of these people because the path forward is not always clear cut. Options are presented in various ways and decisions have to be made. Obviously, making the wrong ones can have devastating results. I was fortunate(!) in that I really had no choice with what I had to do so there were no real decisions to make. Of course, I can't tell anyone what to do but I can suggest that they seek additional input from various sources in order to assist them in the process. Even with her predicament, this woman was very upbeat and positive and I find that so uplifting for myself as well.
One of my daughters sponsored a cosmetics party on Saturday run by a woman who donates all of the proceeds to our local Lions Club that uses them to help people with eye issues. I spent the day there talking with people and met a friend of my daughters whose 12 year old son was stricken with a blood cancer disease two years ago. She has had to devote her time to getting him back to "normal" ever since. We shared war stories. However, it is hard for me to project my story onto his as a child's life differs so much from mine. Why me, peer pressure, and other elements come into play that I did not have to directly face. It's especially tough for children and their families.
Are the photophoresis treatments working? The answer is a definite maye even though it is still early in the program. I used to get cramps in my legs at night - that does not happen anymore. Have there been other improvements? I think that it's a little too early to tell but, most certainly, there has not been an detrimental side effects.
So far, so good...
Bob
June 25, 2011 10:15 AM
Low and to the right!
That's where my "first pitch" went. So, in spite of lousy weather, the game went on and my big moment came and went. We had a great time though. Before the game, we got a tour of the ballpark, we then went and ate, and then the "festivities" started on the field. They had a number of people who were throwing out "first pitches" (mostly kids) , but waited until the very end to introduce me and have me throw the final one. I brought along a pen to have the player who caught the ball autograph it. Hopefully, he'll be a star someday and it will make my momento of the occasion all more meaningful.
The award that I got was a hat with the New Hampshire champions logo on it. But, truth be told, for what I have done the hat is more than enough along with the whole concept of being able to go out on the field, etc.
The fun was continued further when my 6 year old granddaughter was askd to participate in one of the between inning activites. She ran the bases in a "race" with the team mascot. She had a great time as did we all when we watched her run. She actually got two tickets to a future game as a prize!
Now a change of pace. The American Cancer Society has started a "Create More Birthdays" contest whereby people(artists) submit an item to be voted upon. My wife(Nancy Johnson) has submitted the picture "Toasting Tomorrow" which features three of our granddaughters celebrating at a tea party. Their web site is http://my.morebirthdays.com and the category is "The progress we are making against cancer helps save 350 lives a day". So, I am asking for your support for her efforts and I thank you in advance.
Healthwise, things seem to still be the same. Which is a good thing! You would think that after over two years evrything would kind of stabilize. However, in speaking with other survivors, you find out that graft versus host disease abides by no timeline and can flare up at anytime - even years later!
I'm grateful for where I am...
Bob
That's where my "first pitch" went. So, in spite of lousy weather, the game went on and my big moment came and went. We had a great time though. Before the game, we got a tour of the ballpark, we then went and ate, and then the "festivities" started on the field. They had a number of people who were throwing out "first pitches" (mostly kids) , but waited until the very end to introduce me and have me throw the final one. I brought along a pen to have the player who caught the ball autograph it. Hopefully, he'll be a star someday and it will make my momento of the occasion all more meaningful.
The award that I got was a hat with the New Hampshire champions logo on it. But, truth be told, for what I have done the hat is more than enough along with the whole concept of being able to go out on the field, etc.
The fun was continued further when my 6 year old granddaughter was askd to participate in one of the between inning activites. She ran the bases in a "race" with the team mascot. She had a great time as did we all when we watched her run. She actually got two tickets to a future game as a prize!
Now a change of pace. The American Cancer Society has started a "Create More Birthdays" contest whereby people(artists) submit an item to be voted upon. My wife(Nancy Johnson) has submitted the picture "Toasting Tomorrow" which features three of our granddaughters celebrating at a tea party. Their web site is http://my.morebirthdays.com and the category is "The progress we are making against cancer helps save 350 lives a day". So, I am asking for your support for her efforts and I thank you in advance.
Healthwise, things seem to still be the same. Which is a good thing! You would think that after over two years evrything would kind of stabilize. However, in speaking with other survivors, you find out that graft versus host disease abides by no timeline and can flare up at anytime - even years later!
I'm grateful for where I am...
Bob
June 24, 2011 10:00 AM
Will it happen?
It's raining again today. It rained on Wednesday and Thursday as well. So, will the baseball game go on tonight or not? We'll see. The forecast is still iffy. Anyway, I'll report on all the exciting activities of the evening - the award ceremony, the first pitch, the game,... Or, whatever actually does occur.
We met another patient at the photophoresis center yesterday who had a bone marrow transplant 4 years ago. For at least a year things went very well until graft vs host disease began to set in and she began to get weaker and suffer from some hardening of the skin and muscles. The good news is that the treatment seems to be working for her. It took eight weeks to see any kind of results and she is up to thirteen weeks now.
Why do I mention this? Her situation somewhat mirrors mine and it gives me cause to feel that I can get back to being somewhat close to what I was before - not that I was Arnold Schwarzenegger! All the work that I was doing a year ago around the house would take me much longer to do today - though I could(and would) still do it.
I have another "first connection" call to make. The total continues to mount even though most people seem to be fortunate to get just one opportunity to make such a call. I know that I seem to get more from the calls than what I give so for me it is most certainly a pleasure to make these calls.
Three weeks down and nine more weeks to go of the twice a week photophoresis treatments. The actual treatment is nothing. The travel to and from Boston and the time of day(arising at 5:15) are the sticking points. However, as I've said before: "You do what you have to do."
Gotta go and warm up my pitching arm...
Bob
It's raining again today. It rained on Wednesday and Thursday as well. So, will the baseball game go on tonight or not? We'll see. The forecast is still iffy. Anyway, I'll report on all the exciting activities of the evening - the award ceremony, the first pitch, the game,... Or, whatever actually does occur.
We met another patient at the photophoresis center yesterday who had a bone marrow transplant 4 years ago. For at least a year things went very well until graft vs host disease began to set in and she began to get weaker and suffer from some hardening of the skin and muscles. The good news is that the treatment seems to be working for her. It took eight weeks to see any kind of results and she is up to thirteen weeks now.
Why do I mention this? Her situation somewhat mirrors mine and it gives me cause to feel that I can get back to being somewhat close to what I was before - not that I was Arnold Schwarzenegger! All the work that I was doing a year ago around the house would take me much longer to do today - though I could(and would) still do it.
I have another "first connection" call to make. The total continues to mount even though most people seem to be fortunate to get just one opportunity to make such a call. I know that I seem to get more from the calls than what I give so for me it is most certainly a pleasure to make these calls.
Three weeks down and nine more weeks to go of the twice a week photophoresis treatments. The actual treatment is nothing. The travel to and from Boston and the time of day(arising at 5:15) are the sticking points. However, as I've said before: "You do what you have to do."
Gotta go and warm up my pitching arm...
Bob
June 20, 2011 11:35 PM
Humbled once again!
I just received an e-mail from the Leukemia and Lymphoma Society asking if I would be willing to have my picture and story be featured as part of their annual golf tournament this coming September. It is all part of the "Light The Night" fundraising event that they do annually. Specifically, they wish to focus on my participation in the "First Connection" program which has proven to be very successful for them. I still don't feel that I have done that much for them. But, if they feel that my participation will help, I will gladly assist wherever I can.
This Wednesday is our 43rd wedding anniversary. It's hard tobelieve that it has been that many years and it's hard to believe that there was a possibility that I might not have made it. However, the events over the past few years have cemented our relationship all the more which is not so often the case these days. I know of several instances where a cancer diagnosis led to an almost immediate divorce. I am so grateful for all the support that my wife has given to me over the past two and a half years. We all said the words "in sickness or in health" and "for better or worse", but did we actually expect to have to live them? She probably did not! Yet, when the occasion arose, she immediately responded to that commitment without complaint. I cannot say enough about how lucky I have been to have such a woman at my side!
We chose to celebrate the event today because of my need for my photophoresis treatment on Wednesday. We had our first "fun" day in several years for just the two of us by going to the Foxwoods casino. Not that we are big gamblers - for we are not. In fact, it has probably been six years since we were there last. In any case, when all the dust settled, we actually came out a few dollars ahead of the meager budget that we allocated for the day and that included the meals that we ate there as well! So it was a good day; a relaxing day; and, hopefully, the start of our venturing out to do more things as time permits.
As I have said many times, I am so blessed...
Bob
I just received an e-mail from the Leukemia and Lymphoma Society asking if I would be willing to have my picture and story be featured as part of their annual golf tournament this coming September. It is all part of the "Light The Night" fundraising event that they do annually. Specifically, they wish to focus on my participation in the "First Connection" program which has proven to be very successful for them. I still don't feel that I have done that much for them. But, if they feel that my participation will help, I will gladly assist wherever I can.
This Wednesday is our 43rd wedding anniversary. It's hard tobelieve that it has been that many years and it's hard to believe that there was a possibility that I might not have made it. However, the events over the past few years have cemented our relationship all the more which is not so often the case these days. I know of several instances where a cancer diagnosis led to an almost immediate divorce. I am so grateful for all the support that my wife has given to me over the past two and a half years. We all said the words "in sickness or in health" and "for better or worse", but did we actually expect to have to live them? She probably did not! Yet, when the occasion arose, she immediately responded to that commitment without complaint. I cannot say enough about how lucky I have been to have such a woman at my side!
We chose to celebrate the event today because of my need for my photophoresis treatment on Wednesday. We had our first "fun" day in several years for just the two of us by going to the Foxwoods casino. Not that we are big gamblers - for we are not. In fact, it has probably been six years since we were there last. In any case, when all the dust settled, we actually came out a few dollars ahead of the meager budget that we allocated for the day and that included the meals that we ate there as well! So it was a good day; a relaxing day; and, hopefully, the start of our venturing out to do more things as time permits.
As I have said many times, I am so blessed...
Bob
June 18, 2011 9:50 PM
An early "Happy Father's Day" to all you dads!
Tomorrow we go to one of my daughters to celebrate the day. The weather promises to be good and so does the company. It's another Father's Day that I would not have had without all the good things that have gone on over the past two plus years. In any case, I'll have to practice my pitching for the big day on Friday.
What else has happened over the past few days? Well, the second week of photophoresis has come to an end with the realization that one of the nurses has gotten divorced from a Bob Johnson so I'm going to have to watch her rather closely as she jabs me with that long needle. Otherwise, no issues other than being bored to death(what a bad saying that is!) for almost three hours. This coming week, the two days are Wednesday and Thursday which will hold true for the next two months.
I do want to say that I am proud of one of my granddaughters who received an award for all the volunteer work that she had done as a fifth grader. More than any other award, this award recognizes what you are - not who you are. My granddaughter was upset that her award was only for third place and has vowed to do better next year. To me, that says even more!
Tomorrow starts the summer season at church - one service, no choir. It's funny, when the choir season ends it comes just when you want it tobe over. But, come September, you're ready to tackle it once again - not only ready, but eagerly looking forward to it.
Healthwise, the eyes are about the same. The only thing is that I feel weaker than I used to. So, some things take a longer to do or I just don't do them. Not a big deal at this stage of my life.
However, I have to make that big pitch on Friday so time to warm up...
Bob
Tomorrow we go to one of my daughters to celebrate the day. The weather promises to be good and so does the company. It's another Father's Day that I would not have had without all the good things that have gone on over the past two plus years. In any case, I'll have to practice my pitching for the big day on Friday.
What else has happened over the past few days? Well, the second week of photophoresis has come to an end with the realization that one of the nurses has gotten divorced from a Bob Johnson so I'm going to have to watch her rather closely as she jabs me with that long needle. Otherwise, no issues other than being bored to death(what a bad saying that is!) for almost three hours. This coming week, the two days are Wednesday and Thursday which will hold true for the next two months.
I do want to say that I am proud of one of my granddaughters who received an award for all the volunteer work that she had done as a fifth grader. More than any other award, this award recognizes what you are - not who you are. My granddaughter was upset that her award was only for third place and has vowed to do better next year. To me, that says even more!
Tomorrow starts the summer season at church - one service, no choir. It's funny, when the choir season ends it comes just when you want it tobe over. But, come September, you're ready to tackle it once again - not only ready, but eagerly looking forward to it.
Healthwise, the eyes are about the same. The only thing is that I feel weaker than I used to. So, some things take a longer to do or I just don't do them. Not a big deal at this stage of my life.
However, I have to make that big pitch on Friday so time to warm up...
Bob
June 14, 2011 9:25 PM
I'm somewhat embarrassed!
I was selected to be a "New Hampshire Champion" and will be honored at the New Hampshire Fisher Cats game on Friday, June 24th. How was I chosen? One of my daughters sent in a letter detailing some of the things that I have done on my road to recovery. From all of the entries that were submitted(one?), I was selected. So I will be the only one honored that night. I read the letter that my daughter sent and though it was truthful in every way, I just feel that it is not enough to deserve such recognition.
What do I get? A hat, some kind of award, and VIP treatment for the night. That's certainly nice and make for a once in a lifetime event. However, I get to throw out the first pitch. Not having thrown a baseball in a few years, I'm going to have to do a little(make that a lot) of practicing between now and then. Another side benefit is that the Fisher Cats play the Portland Sea Dogs(the minor league affiliate of our major league team - the Boston Red Sox).
Needless to say, I will report how well the evening went. I'm assuming that it won't be rained out!
Today, I completed photophoresis treatment number four. I don't think that there have been any noticeable improvements as of yet. A former patient stopped by while we were there and everyone remarked how well she has done - so we can assume that the treatment really does work! However, there was another fellow there who continues to be treated twice a week after two years. So it is possible to be on this for quite a while. We'll see!
Not much else to report as Sunday saw my niece's bridal shower and a good time was had by all.
Again, I am deeply humbled by the recognition coming my way.
Another blessing this journey of mine...
Bob
I was selected to be a "New Hampshire Champion" and will be honored at the New Hampshire Fisher Cats game on Friday, June 24th. How was I chosen? One of my daughters sent in a letter detailing some of the things that I have done on my road to recovery. From all of the entries that were submitted(one?), I was selected. So I will be the only one honored that night. I read the letter that my daughter sent and though it was truthful in every way, I just feel that it is not enough to deserve such recognition.
What do I get? A hat, some kind of award, and VIP treatment for the night. That's certainly nice and make for a once in a lifetime event. However, I get to throw out the first pitch. Not having thrown a baseball in a few years, I'm going to have to do a little(make that a lot) of practicing between now and then. Another side benefit is that the Fisher Cats play the Portland Sea Dogs(the minor league affiliate of our major league team - the Boston Red Sox).
Needless to say, I will report how well the evening went. I'm assuming that it won't be rained out!
Today, I completed photophoresis treatment number four. I don't think that there have been any noticeable improvements as of yet. A former patient stopped by while we were there and everyone remarked how well she has done - so we can assume that the treatment really does work! However, there was another fellow there who continues to be treated twice a week after two years. So it is possible to be on this for quite a while. We'll see!
Not much else to report as Sunday saw my niece's bridal shower and a good time was had by all.
Again, I am deeply humbled by the recognition coming my way.
Another blessing this journey of mine...
Bob
June 10, 2011 11:45 PM
I complained when I had no shoes. Then I met a man with no feet!
Not that I have been complaining, mind you. But everyday, I realize how fortunate I have been when I continue to hear stories of what has befallen other people that have been battling leukemia as well. On Thursday, during my photophoresis treatment(the 3rd and last for the week), one of the nurses told me of a patient who suffered from such severe dry eye that he could not even open his eyes! Also, the fellow across from me told us that he was Anthem's most expensive patient last year. He racked up a total of 1.6 million dollars in medical expenses! I never came close to that. That's not an honor that any of us would wish to have.
The remaining two photophoresis treatments went without incident other than the attendant boredom of lying there for 2 and a half hours. Likewise the commute in and out of Boston is horrendous especially during afternoon rush hour. On Thursday we left at 10:15 in the morning and did not get home until 6:15! Combatting traffic and a downpour made for a lengthy ride home. There's something to be said for a helicopter! Maybe Medicare will add it to the list of covered benefits.
Next week starts the easy(!) two day a week trips for a measly eleven weeks. As much as I would like to see this portion of the treatment come to an end, at the same time I don't want to wish the summer away.
I spoke to my mother today and she is in great spirits! She went grocery shopping today for the first time without needing a cane or any assistance whatsoever.
Not much else to say as a beautiful weekend approaches.
All I know is that I have been very lucky...
Bob
Not that I have been complaining, mind you. But everyday, I realize how fortunate I have been when I continue to hear stories of what has befallen other people that have been battling leukemia as well. On Thursday, during my photophoresis treatment(the 3rd and last for the week), one of the nurses told me of a patient who suffered from such severe dry eye that he could not even open his eyes! Also, the fellow across from me told us that he was Anthem's most expensive patient last year. He racked up a total of 1.6 million dollars in medical expenses! I never came close to that. That's not an honor that any of us would wish to have.
The remaining two photophoresis treatments went without incident other than the attendant boredom of lying there for 2 and a half hours. Likewise the commute in and out of Boston is horrendous especially during afternoon rush hour. On Thursday we left at 10:15 in the morning and did not get home until 6:15! Combatting traffic and a downpour made for a lengthy ride home. There's something to be said for a helicopter! Maybe Medicare will add it to the list of covered benefits.
Next week starts the easy(!) two day a week trips for a measly eleven weeks. As much as I would like to see this portion of the treatment come to an end, at the same time I don't want to wish the summer away.
I spoke to my mother today and she is in great spirits! She went grocery shopping today for the first time without needing a cane or any assistance whatsoever.
Not much else to say as a beautiful weekend approaches.
All I know is that I have been very lucky...
Bob
June 6, 2011 11:50 PM
From beyond the grave!
That's right! On Saturday night, a friend received a text message from another friend who has relocated to North Carolina asking for an immediate phone call. The local friend did so and responded to the news that, at a party in North Carolina, our friend heard from someone who used to live in our condo complaex and has since relocated to the area that I had died! If so, then death was certianly not very traumatic for me nor is heaven the paradise that I hear about every Sunday at church. Also, amazingly, all my current friends and acquaintances have passed away with me making the journey to the next life very transparent!
My death notwithstanding, today marked the first day of my photoporesis procedures. There really is not a lot to write about. All you do is lie there, they stick a needle into your arm, run your blood through a machine that spins and separates the components, treat the white blood cells with ultraviolet light and return the whole deal back to you. The problem is that it is a lengthy process(over 2 hours) requiring that you do not visit a rest room for that period of time. Today was a non-issue for me - we'll see what tomorrow brings. Also, you cannot move the arm that has the needle in it. being one handed greatly limits what you can do. So it is most assuredly a very boring time.
Now, the big question(s)! How does it work and what does it do to make things better? The answer is... They really don't know the answer. All they know is that they have employed tis procedure since the seventies and it has met with a lot of success.
As you can imagine, with others being treated as well, you swap war stories. Once again, I have come to realize how lucky I have been. A younger man was next me who was diagnosed just two weeks after his daughter was born - four years ago. He suffered tremendously with graft versus host disease especially with scleroderma(hardening of the skin and skin sores). Today he can barely walk and must ride a scooter - though the photophoresis treatments seem to be making some improvement. His GVHD was enough that they have him on a 400mg daily dosage of prednisone! Mine is 20. With all that prednisone, he has gained one hundred pounds and has swollen up excessively. None of these things have befallen me.
We also got our appointment schedule for the next 11 weeks - every Wednesday and Thursday at 8:00. This requires a 5:15 arising time. Ugh! But. as with all things, you do what you have to do.
The status is now - one down, many to go...
Bob
That's right! On Saturday night, a friend received a text message from another friend who has relocated to North Carolina asking for an immediate phone call. The local friend did so and responded to the news that, at a party in North Carolina, our friend heard from someone who used to live in our condo complaex and has since relocated to the area that I had died! If so, then death was certianly not very traumatic for me nor is heaven the paradise that I hear about every Sunday at church. Also, amazingly, all my current friends and acquaintances have passed away with me making the journey to the next life very transparent!
My death notwithstanding, today marked the first day of my photoporesis procedures. There really is not a lot to write about. All you do is lie there, they stick a needle into your arm, run your blood through a machine that spins and separates the components, treat the white blood cells with ultraviolet light and return the whole deal back to you. The problem is that it is a lengthy process(over 2 hours) requiring that you do not visit a rest room for that period of time. Today was a non-issue for me - we'll see what tomorrow brings. Also, you cannot move the arm that has the needle in it. being one handed greatly limits what you can do. So it is most assuredly a very boring time.
Now, the big question(s)! How does it work and what does it do to make things better? The answer is... They really don't know the answer. All they know is that they have employed tis procedure since the seventies and it has met with a lot of success.
As you can imagine, with others being treated as well, you swap war stories. Once again, I have come to realize how lucky I have been. A younger man was next me who was diagnosed just two weeks after his daughter was born - four years ago. He suffered tremendously with graft versus host disease especially with scleroderma(hardening of the skin and skin sores). Today he can barely walk and must ride a scooter - though the photophoresis treatments seem to be making some improvement. His GVHD was enough that they have him on a 400mg daily dosage of prednisone! Mine is 20. With all that prednisone, he has gained one hundred pounds and has swollen up excessively. None of these things have befallen me.
We also got our appointment schedule for the next 11 weeks - every Wednesday and Thursday at 8:00. This requires a 5:15 arising time. Ugh! But. as with all things, you do what you have to do.
The status is now - one down, many to go...
Bob
June 5, 2011 12:45 Am
Be prepared!
That's the Boy Scout motto and also the creed for us photophoresis patients.It's not just showing up for the treatments that is required. We have to go easy on the fats and/or carbs the day before and, most of all, no alcohol! Since I go Monday, Tuesday, and Thursday this week - that kind of sets the tone for not just Sunday but for every day through Wednesday. Hey, it's no big deal. I didn't havealcohol for eight months two years ago and all I have to do is not overdose on the fats - not eliminate them.
Saturday marked an epic day for myself and a friend of mine. It was his birthday! Hey, all of us who are still alive celebrate them - so that's no big deal! However, without revealing how young we are, we have now known each other for 60 years! We don't have any other friends who can attest to having known someone (other than relatives) for the length of time. We do see friends that my wife has known for 50 years. In fact, we'll see them on Friday. But 50 is not 60!
Otherwise, things are on hold regarding the contact lenses for my eyes while they research what my insurance will cover. It's funny, but taking my blood, treating it, and recycling it through my body does not bother me in the least. But, putting lenses in my eyes fills me with fear and trepidation! I just don't like shoving things into my eyes even though I fill them with all kinds of goop every day.
As I said before, I have some good days and some days that are not quite as good when it comes to my eyes. I think that the bright sun has something to do with it. As long as I wear sunglasses, I seem to be OK. But, if not, then they start to burn a bit. So I do have to be careful this time of year as the sun is the most intense that it will be. Even so, I really do enjoy the warm weather. I no longer find much redeeming value in winter.
I do, however, find redeeming value in life.
And I plan on maintaining it as long as I can...
Bob
That's the Boy Scout motto and also the creed for us photophoresis patients.It's not just showing up for the treatments that is required. We have to go easy on the fats and/or carbs the day before and, most of all, no alcohol! Since I go Monday, Tuesday, and Thursday this week - that kind of sets the tone for not just Sunday but for every day through Wednesday. Hey, it's no big deal. I didn't havealcohol for eight months two years ago and all I have to do is not overdose on the fats - not eliminate them.
Saturday marked an epic day for myself and a friend of mine. It was his birthday! Hey, all of us who are still alive celebrate them - so that's no big deal! However, without revealing how young we are, we have now known each other for 60 years! We don't have any other friends who can attest to having known someone (other than relatives) for the length of time. We do see friends that my wife has known for 50 years. In fact, we'll see them on Friday. But 50 is not 60!
Otherwise, things are on hold regarding the contact lenses for my eyes while they research what my insurance will cover. It's funny, but taking my blood, treating it, and recycling it through my body does not bother me in the least. But, putting lenses in my eyes fills me with fear and trepidation! I just don't like shoving things into my eyes even though I fill them with all kinds of goop every day.
As I said before, I have some good days and some days that are not quite as good when it comes to my eyes. I think that the bright sun has something to do with it. As long as I wear sunglasses, I seem to be OK. But, if not, then they start to burn a bit. So I do have to be careful this time of year as the sun is the most intense that it will be. Even so, I really do enjoy the warm weather. I no longer find much redeeming value in winter.
I do, however, find redeeming value in life.
And I plan on maintaining it as long as I can...
Bob
May 30, 2011 11:15 PM
Burgers and dogs!
If that's the best way to celebrate Memorial Day weekend, then I am truly at the top of the charts. Last week we planned a burger and hot dog barbecue with friends for today. On Saturday, we went to a birthday party for my niece's 4 year old son. Guess what they served? Burgers and dogs! Before we left for the party on Saturday, friends invited us for dinner Sunday evening. How wonderful you say! Guess what they served? I can't even answer the question anymore! If I don't see another hamburger or hot dog for a month - it will be too soon!
The highlight of the weekend, however, was to see my mother out of rehab and at the party on Saturday. She looks a lot better and she says that this is the best that she has felt in months - lots of energy and her appetite is back! So, now we take it one day at a time as she regains her strength. She now refuses to have any more treatments for whatever cancer may be left and who can blame her? So we will just have to ride this out until the end - whenever that may be. She is totally aware of this but she has always been the intrepid trooper who pushes ever onward with the utmost in positive thinking. Believe me when i say that such a spirit is very uplifting for all those around her.
Otherwise, this promises to be a quiet week before three trips to Boston next week to start the photopheresis treatments.
I'm going to come to love Boston this summer. I have no choice...
Bob
If that's the best way to celebrate Memorial Day weekend, then I am truly at the top of the charts. Last week we planned a burger and hot dog barbecue with friends for today. On Saturday, we went to a birthday party for my niece's 4 year old son. Guess what they served? Burgers and dogs! Before we left for the party on Saturday, friends invited us for dinner Sunday evening. How wonderful you say! Guess what they served? I can't even answer the question anymore! If I don't see another hamburger or hot dog for a month - it will be too soon!
The highlight of the weekend, however, was to see my mother out of rehab and at the party on Saturday. She looks a lot better and she says that this is the best that she has felt in months - lots of energy and her appetite is back! So, now we take it one day at a time as she regains her strength. She now refuses to have any more treatments for whatever cancer may be left and who can blame her? So we will just have to ride this out until the end - whenever that may be. She is totally aware of this but she has always been the intrepid trooper who pushes ever onward with the utmost in positive thinking. Believe me when i say that such a spirit is very uplifting for all those around her.
Otherwise, this promises to be a quiet week before three trips to Boston next week to start the photopheresis treatments.
I'm going to come to love Boston this summer. I have no choice...
Bob
May 27, 2011 11:45 PM
Just a quick update!
But a significant one. Yesyerday morning I spoke on the telephone to the fellow who was chosen to be a donor from the bone marrow drives that we had. It wasn't just that I was speaking to him on the phone, it was the fact that he was at Dana-Farber and actually donating while we spoke! It was to be at least a six hour time frame for him - not counting the preparation that he had to go through beforehand. He had the same observation that I did about what the fluid looked like - tomato soup!
I was really thrilled - but he sounded like he was absolutely beaming to be able to do something that could possibly save the life of another!
Otherwise, quiet times. My eyes are doing well. We are just waiting to get our ducks in a row before we can proceed with the testing, fitting, etc. That will be in a few weeks. Meanwhile, this week is the last one before the photophoresis starts. So I'm just going to be enjoying each day moreso because we won't have to make the trip to Boston. Starting June 6th, that all comes to an end and the fun begins.
New eyes, reworked blood - it will be an interesting summer...
Bob
But a significant one. Yesyerday morning I spoke on the telephone to the fellow who was chosen to be a donor from the bone marrow drives that we had. It wasn't just that I was speaking to him on the phone, it was the fact that he was at Dana-Farber and actually donating while we spoke! It was to be at least a six hour time frame for him - not counting the preparation that he had to go through beforehand. He had the same observation that I did about what the fluid looked like - tomato soup!
I was really thrilled - but he sounded like he was absolutely beaming to be able to do something that could possibly save the life of another!
Otherwise, quiet times. My eyes are doing well. We are just waiting to get our ducks in a row before we can proceed with the testing, fitting, etc. That will be in a few weeks. Meanwhile, this week is the last one before the photophoresis starts. So I'm just going to be enjoying each day moreso because we won't have to make the trip to Boston. Starting June 6th, that all comes to an end and the fun begins.
New eyes, reworked blood - it will be an interesting summer...
Bob
May 23, 2011 11:50 PM
20/20!
We went to Mass Eye And Ear this morning to see the contact lens doctor. Basically, the visit is just to determine whether or not I am a good candidate for the lenses. In order to determine that, the doctor first examined my eyes (no shock there!) and then placed a couple of lenses in my eyes and, in combination with some handheld lenses that she had, corrected my eyesight in my right eye to 20/20!
In fact, according to the doctor, the only way to correct the issues with my right eye is with a contact lens of some dort - eyeglasses cannot do the trick. Thus, it was determined that I am an excellent candidate for the lenses.
What's the next step? First of all, they have to ascertain what my insurance will pay. Once that's determined, then several days have to be spent in outfitting me with lenses that are designed just for me and "training" me how to use them. Unfortunately, with the photophoresis treatments coming up, I have no clue how I am going to squeeze in "several" days. It's going to be a busy summer.
Ultimately, the lenses will designed for farsightedness so that I will require reading glasses. No problem there since that's what my current glasses are. The actual lenses are a little bigger than standard contact lenses and, most likely, will require the use of fewer eye drops. That would be a huge side benefit. I must admit that I did not feel the lenses in my eyes at all. Nor was there any issue getting them in or out. So, maybe my concerns about utilizing them are somewhat misguided.
All in all, a good day.
With any luck, by the end of the summer, I'll be in great shape...
Bob
We went to Mass Eye And Ear this morning to see the contact lens doctor. Basically, the visit is just to determine whether or not I am a good candidate for the lenses. In order to determine that, the doctor first examined my eyes (no shock there!) and then placed a couple of lenses in my eyes and, in combination with some handheld lenses that she had, corrected my eyesight in my right eye to 20/20!
In fact, according to the doctor, the only way to correct the issues with my right eye is with a contact lens of some dort - eyeglasses cannot do the trick. Thus, it was determined that I am an excellent candidate for the lenses.
What's the next step? First of all, they have to ascertain what my insurance will pay. Once that's determined, then several days have to be spent in outfitting me with lenses that are designed just for me and "training" me how to use them. Unfortunately, with the photophoresis treatments coming up, I have no clue how I am going to squeeze in "several" days. It's going to be a busy summer.
Ultimately, the lenses will designed for farsightedness so that I will require reading glasses. No problem there since that's what my current glasses are. The actual lenses are a little bigger than standard contact lenses and, most likely, will require the use of fewer eye drops. That would be a huge side benefit. I must admit that I did not feel the lenses in my eyes at all. Nor was there any issue getting them in or out. So, maybe my concerns about utilizing them are somewhat misguided.
All in all, a good day.
With any luck, by the end of the summer, I'll be in great shape...
Bob
May 22, 2011 11:50 PM
Contact!
Lenses that is and maybe or maybe not. Tomorrow we go back to Mass Eye And Ear to visit a third doctor there. My goal is to see them all! Anyway, we discuss the possibility of employing special a scleral shell lens for eye protection and, possibly, some better vision. Although, these lenses are not meant to be corrective.
Now, I have always despised the idea of shoving lenses in your eyes having heard of people who have has trouble with such things. Plus, these lenses are bigger than regular contacts - making them, in my estimation, even more difficult to put in and take out. Anyway, we find out tomorrow what the scoop will. be.
Otherwise, no problems or concerns over the past few days. My mother had the staples removed from the surgery that she had a few weeks ago - 21 in all! My sister said the the incision is huge! I can believe it when you have that many staples to remove. It appears that she will go home later this week from the rehab center. She has made a remarkable recovery.
On Friday night, we went to the annual bridge party that is held to have everyone get together and to hand out the prizes to the winners. Wonder of wonders, my wife and I finished first. It's not the first time that that has happened but we figured that we were nowhere in the running. As for the men's bracket, we finished upper middle and it didn't help that someone did not reurn the scores from one of our matches. It would not have put us in the money but our overall score would have been more respectable.
Saturday, it was granchildren's soccer and then to my sister-in-law's for dinner.
A good day; a good weekend; and, hopefully , a great Monday as well...
Bob
Lenses that is and maybe or maybe not. Tomorrow we go back to Mass Eye And Ear to visit a third doctor there. My goal is to see them all! Anyway, we discuss the possibility of employing special a scleral shell lens for eye protection and, possibly, some better vision. Although, these lenses are not meant to be corrective.
Now, I have always despised the idea of shoving lenses in your eyes having heard of people who have has trouble with such things. Plus, these lenses are bigger than regular contacts - making them, in my estimation, even more difficult to put in and take out. Anyway, we find out tomorrow what the scoop will. be.
Otherwise, no problems or concerns over the past few days. My mother had the staples removed from the surgery that she had a few weeks ago - 21 in all! My sister said the the incision is huge! I can believe it when you have that many staples to remove. It appears that she will go home later this week from the rehab center. She has made a remarkable recovery.
On Friday night, we went to the annual bridge party that is held to have everyone get together and to hand out the prizes to the winners. Wonder of wonders, my wife and I finished first. It's not the first time that that has happened but we figured that we were nowhere in the running. As for the men's bracket, we finished upper middle and it didn't help that someone did not reurn the scores from one of our matches. It would not have put us in the money but our overall score would have been more respectable.
Saturday, it was granchildren's soccer and then to my sister-in-law's for dinner.
A good day; a good weekend; and, hopefully , a great Monday as well...
Bob
May 18, 2011 9:20 PM
Doctor, doctor, give the news!
Today I went to Mass Eye And Ear, Brigham And Women's Hospital(both in Boston), and then to the dentist in a neighboring town. I really could not have asked for a much better result from any of the three.
At Mass And Ear, my doctor said that mt eyes had improved remarkedly. So much so that he asked that my next appointment be scheduled six months down the road. However, he still suggested that I keep my appointment with the scleral shell contact lens doctor on Monday. The purpose of the lenses will bwe to improve my vision as the scarring on my right eye will probably never go away and he stated that he "would be a fool" to do any kind of surgery on it.
I admit it's a nuisance, but I can live with it.
There is an intersesting story regarding my appointment with the lens doctor. Last month my eye doctor said to schedule the appointment with her but only after I had my appointment with him. So we set his appointment for today and hers for Monday. A few weeks ago, I got a call from the lens doctor's office stating that they had an opening on the 9th. I said that I could not accept the appointment because it was before my eye doctor's visit and that I would maintain the appointment for the 23rd. So, today we went to confirm the appointment for the 23rd and were told that the doctor would not be at the hospital on the 23rd and that I had one on the 9th and, since I didn't go, I was listed as a "no show"! Ultimtely, I was able to get an appointment on Monday an hour later than my original one. Since we were told that the doctor would not be at the hospital that day, I wondered how that came to pass!
At Brigham And Women's, I went to have my veins checked to see if they were acceptable for the photopheresis procedure or if I would need to have a port installed. Fortunately, they were better than OK (a vampire would love me), no port is necessary, and I dodged that bullet.
We then rushed home, I grabbed a peanut butter sandwich and ran off to the dentist to have my three crowns installed. All went without a hitch there.
And thus ended my medical odyssey.
Not much else to say at this point. But I will share my photopheresis experience with you as it happens. Right now, the first appointment is scheduled for June 6th. It looks like it will be interesting and, most certainly, something that all of you will most likely never undergo - thank God!
So...
good news continues. Who can ask for more...
Bob
Today I went to Mass Eye And Ear, Brigham And Women's Hospital(both in Boston), and then to the dentist in a neighboring town. I really could not have asked for a much better result from any of the three.
At Mass And Ear, my doctor said that mt eyes had improved remarkedly. So much so that he asked that my next appointment be scheduled six months down the road. However, he still suggested that I keep my appointment with the scleral shell contact lens doctor on Monday. The purpose of the lenses will bwe to improve my vision as the scarring on my right eye will probably never go away and he stated that he "would be a fool" to do any kind of surgery on it.
I admit it's a nuisance, but I can live with it.
There is an intersesting story regarding my appointment with the lens doctor. Last month my eye doctor said to schedule the appointment with her but only after I had my appointment with him. So we set his appointment for today and hers for Monday. A few weeks ago, I got a call from the lens doctor's office stating that they had an opening on the 9th. I said that I could not accept the appointment because it was before my eye doctor's visit and that I would maintain the appointment for the 23rd. So, today we went to confirm the appointment for the 23rd and were told that the doctor would not be at the hospital on the 23rd and that I had one on the 9th and, since I didn't go, I was listed as a "no show"! Ultimtely, I was able to get an appointment on Monday an hour later than my original one. Since we were told that the doctor would not be at the hospital that day, I wondered how that came to pass!
At Brigham And Women's, I went to have my veins checked to see if they were acceptable for the photopheresis procedure or if I would need to have a port installed. Fortunately, they were better than OK (a vampire would love me), no port is necessary, and I dodged that bullet.
We then rushed home, I grabbed a peanut butter sandwich and ran off to the dentist to have my three crowns installed. All went without a hitch there.
And thus ended my medical odyssey.
Not much else to say at this point. But I will share my photopheresis experience with you as it happens. Right now, the first appointment is scheduled for June 6th. It looks like it will be interesting and, most certainly, something that all of you will most likely never undergo - thank God!
So...
good news continues. Who can ask for more...
Bob
May 17, 2011 1:45 AM
A nice couple of days!
On Sunday, we had five friends over for dinner after church. There really was no better way to soend a rainy Sunday afternoon. With four of us celebrating May birthdays, we had a great time doing what us older folk do - drinking, eating, talking, and drinking! Then we ended the day by going over to one of my daughter's houses and having another birthday cake there. All in all, a fine day.
Tonight, when we brought my grandson to a movie that involved a high school wrestler, the proprietor of the theater let him in for free since he is a high school wrestler. What a wonderful thing to do! However, he stopped short at giving a fifteen year old boy free food! I have no idea what that was all about!
So, a good couple of days as we our way to Wednesday and our next visit to the eye doctor. Of course, this is followed by a visit to my dentist as well. Talk about racking up the medical deductions for next year's income tax!
My mother called from her rehab center to wish me a happy birthday as well. She is doing great. She goes on Thursday to have the staples removed from her surgery and will most likely go home sometyime next week. For eighty eight, she bounces back well from situations like this.
Preparation for Wednesday is preceeded by Tuesday on which nothing happens other than the third of my four photography classes at night. I had been making plans to wash our windows sometime this week but it is supposed to rain every day until Saturday. It is so cold and raint right now that you would thing that it's November!
Oh well, there is no use in complaining about it. Just grin:) and bear it...
Bob
On Sunday, we had five friends over for dinner after church. There really was no better way to soend a rainy Sunday afternoon. With four of us celebrating May birthdays, we had a great time doing what us older folk do - drinking, eating, talking, and drinking! Then we ended the day by going over to one of my daughter's houses and having another birthday cake there. All in all, a fine day.
Tonight, when we brought my grandson to a movie that involved a high school wrestler, the proprietor of the theater let him in for free since he is a high school wrestler. What a wonderful thing to do! However, he stopped short at giving a fifteen year old boy free food! I have no idea what that was all about!
So, a good couple of days as we our way to Wednesday and our next visit to the eye doctor. Of course, this is followed by a visit to my dentist as well. Talk about racking up the medical deductions for next year's income tax!
My mother called from her rehab center to wish me a happy birthday as well. She is doing great. She goes on Thursday to have the staples removed from her surgery and will most likely go home sometyime next week. For eighty eight, she bounces back well from situations like this.
Preparation for Wednesday is preceeded by Tuesday on which nothing happens other than the third of my four photography classes at night. I had been making plans to wash our windows sometime this week but it is supposed to rain every day until Saturday. It is so cold and raint right now that you would thing that it's November!
Oh well, there is no use in complaining about it. Just grin:) and bear it...
Bob
May 14, 2011 11:55 PM
Almost happy birthday!
Yes, the 15th is my bithday(my real birthday) and an occasion that I would not have been able to celebrate except for the great doctors that I have had and the success of the treatment that they have prescribed. Needless to say, with all of the doctor's visits this past week, many people have wished me a happy birthday in advance.
Otherwise, it has been quiet. This week it's off to Mass Eye And Ear to see how I have progressed in that area. Also, I get three crowns put on this week as well. Visting, doctors, dentists, etc. just never seems to end. But, thank God, I'm around to be able to do these things.
Tonight we played our monthly cards with friends. It's always a good time to get together totalk about tyhings and have some fun as well.
I'll sign off now in order to get ready for the big day...
Bob
Yes, the 15th is my bithday(my real birthday) and an occasion that I would not have been able to celebrate except for the great doctors that I have had and the success of the treatment that they have prescribed. Needless to say, with all of the doctor's visits this past week, many people have wished me a happy birthday in advance.
Otherwise, it has been quiet. This week it's off to Mass Eye And Ear to see how I have progressed in that area. Also, I get three crowns put on this week as well. Visting, doctors, dentists, etc. just never seems to end. But, thank God, I'm around to be able to do these things.
Tonight we played our monthly cards with friends. It's always a good time to get together totalk about tyhings and have some fun as well.
I'll sign off now in order to get ready for the big day...
Bob
May 12, 2011 12:05 AM
Photophoresis!
That's the word of the day. I have a subcutaneous thickening under my skin around my thighs, abdomen, chest, and arms. Overall, it hampers your mobility and could possibly hamper your ability to breathe properly. Over time it could go away without any additional treatment, it could possibly get worse(doubtful as it appears to have plateaued at this level for a while), or it could stay like this forever. What's another solution? Photophoresis!
What does it do? It offers another way to try to suppress the donor lymphocytes (type of white blood cells) that stimulate immune reactions and aid in the development of GvHD(graft vs host disease).
How does it work? Blood is taken from one arm and processed through a cell separation machine. The machine removes and treats the lymphocytes and returns them and the rest of the blood back to your other arm. When the blood initially enters the machine, it is mixed with an anticoagulent to prevent it from clotting. Then the machine collects the lymphocytes and mixes them with a drug. This is a photosensitizing agent that becomes active when it is exposed to ultraviolet light. The mixture is then exposed to UV light before being reinfused into your body.
This is just another way of fending off GvHD. It has several benefits, however. There are NO side effects and it will reduce my need to take prednisone - a wonder drug that has not so wonderful side effects. My doctor even admits that in the long run one can consider it to be poison.
Of course, there is a down side. The first week, I need three treatments(each one taking at least two hours) followed by 12 weeks of two treatments each. All of this must be done in Boston thus extending the entire process to at least 4 hours. Lastly, it doesn't always work for everyone. But that can be determined over time and the procedure can be stopped immediately if there are no positive results.
I must admit that the thought of doing this would have grossed me out three years ago. But after having had my blood drawn so many times over the past two and a half years, it just doesn't matter anymore.
So, that was one outcome of my doctor's visit today. the other was that there continues to be no sign of the leukemia which, obviously, has been the goal of this whole process. The bottom line is that the mission has been accomplished but we've taken a few hits along the way. If the photophoresis works and I can get back to full "normal", life will be fine. Note, however, that it will have no effect on the status of my eyes.
As to the status of my eyes, today was one of those good days. No pain at all as long as I continue to pump in the drops. However, when you feel no pain, you sometimes forget that you are no longer like normal people and you forget to load up on the drops when things are going well which can then lead to some irritation.
Change of subject, my mother is out of the hospital and in a rehab center and faring very well after her surgery. She is the ideal patient, always doing what the doctors tell her to do which gets her back on her feet ASAP. When will she go home? Not sure yet. But it's only been a week since her surgery so we can't push it.
It's been a good day. I don't go back to the doctor for three months which is always a good sign.
As usual, the plan is to take things one day at a time...
Bob
That's the word of the day. I have a subcutaneous thickening under my skin around my thighs, abdomen, chest, and arms. Overall, it hampers your mobility and could possibly hamper your ability to breathe properly. Over time it could go away without any additional treatment, it could possibly get worse(doubtful as it appears to have plateaued at this level for a while), or it could stay like this forever. What's another solution? Photophoresis!
What does it do? It offers another way to try to suppress the donor lymphocytes (type of white blood cells) that stimulate immune reactions and aid in the development of GvHD(graft vs host disease).
How does it work? Blood is taken from one arm and processed through a cell separation machine. The machine removes and treats the lymphocytes and returns them and the rest of the blood back to your other arm. When the blood initially enters the machine, it is mixed with an anticoagulent to prevent it from clotting. Then the machine collects the lymphocytes and mixes them with a drug. This is a photosensitizing agent that becomes active when it is exposed to ultraviolet light. The mixture is then exposed to UV light before being reinfused into your body.
This is just another way of fending off GvHD. It has several benefits, however. There are NO side effects and it will reduce my need to take prednisone - a wonder drug that has not so wonderful side effects. My doctor even admits that in the long run one can consider it to be poison.
Of course, there is a down side. The first week, I need three treatments(each one taking at least two hours) followed by 12 weeks of two treatments each. All of this must be done in Boston thus extending the entire process to at least 4 hours. Lastly, it doesn't always work for everyone. But that can be determined over time and the procedure can be stopped immediately if there are no positive results.
I must admit that the thought of doing this would have grossed me out three years ago. But after having had my blood drawn so many times over the past two and a half years, it just doesn't matter anymore.
So, that was one outcome of my doctor's visit today. the other was that there continues to be no sign of the leukemia which, obviously, has been the goal of this whole process. The bottom line is that the mission has been accomplished but we've taken a few hits along the way. If the photophoresis works and I can get back to full "normal", life will be fine. Note, however, that it will have no effect on the status of my eyes.
As to the status of my eyes, today was one of those good days. No pain at all as long as I continue to pump in the drops. However, when you feel no pain, you sometimes forget that you are no longer like normal people and you forget to load up on the drops when things are going well which can then lead to some irritation.
Change of subject, my mother is out of the hospital and in a rehab center and faring very well after her surgery. She is the ideal patient, always doing what the doctors tell her to do which gets her back on her feet ASAP. When will she go home? Not sure yet. But it's only been a week since her surgery so we can't push it.
It's been a good day. I don't go back to the doctor for three months which is always a good sign.
As usual, the plan is to take things one day at a time...
Bob
May 9, 2011 12:45 AM
On the mend!
It being Mother's Day (and with my mother in the hospital), we went to visit her and saw that she was progressing well after her surgery. A lot of the tubes were removed and she was now on a liquid diet. Obviously not there yet, she still has taken a big step forward. Solid food, rehab, and then home seems to be the path ahead.
We attended a 50th birthday party on Saturday. That year is so in the rearview mirror for me that I almost forget what it was like to be "only" 50! My own birthday(the real one) is coming soon and just to be here and able to celebrate it is such a blessing for me. The American Cancer Society bills itself as "The Proud Sponsor Of Birthdays" and they are so right! Without all the medical advancements in that area, I wouldn't be here today.
And not being here today would have caused me to miss a fun day on Saturday with two of my granddaughters. They visited for a few hours in the afternoon and we all had a great time. Kids make us fell young again. Their energy levels and zest for life present with a perspective on things that we should be more aware of. That's why it's so much fun to have them around. And, it doesn't hurt that they like to be around us too. Why? I not quite sure, but I won't complain.
All in all, a great few days in so many ways.
Life is good...
Bob
It being Mother's Day (and with my mother in the hospital), we went to visit her and saw that she was progressing well after her surgery. A lot of the tubes were removed and she was now on a liquid diet. Obviously not there yet, she still has taken a big step forward. Solid food, rehab, and then home seems to be the path ahead.
We attended a 50th birthday party on Saturday. That year is so in the rearview mirror for me that I almost forget what it was like to be "only" 50! My own birthday(the real one) is coming soon and just to be here and able to celebrate it is such a blessing for me. The American Cancer Society bills itself as "The Proud Sponsor Of Birthdays" and they are so right! Without all the medical advancements in that area, I wouldn't be here today.
And not being here today would have caused me to miss a fun day on Saturday with two of my granddaughters. They visited for a few hours in the afternoon and we all had a great time. Kids make us fell young again. Their energy levels and zest for life present with a perspective on things that we should be more aware of. That's why it's so much fun to have them around. And, it doesn't hurt that they like to be around us too. Why? I not quite sure, but I won't complain.
All in all, a great few days in so many ways.
Life is good...
Bob
May 5, 2011 11:55 PM
Survival!
My mother survived her surgery today as the surgeon was more than pleased by the fact that she is such a fighter. First we talked to the surgeon after the procedure and he said that everything went as it should, That was good news! Then we went to see my mother in the recovery room shortly afterwards and she was both awake and alert - much better than what we had been prepared to see.
We left the hospital shortly thereafter as she needed her rest. Our plan is to go visit with her on Sunday - which is Mother's Day. My sister, who lives much closer to her than we do, will visit with her over the next few days.
What's next? It's get well first, then rehab, and finally home. Certainly the desired path that we all wished to see - but not necessarily the one that we expected to see. So, good news in this regard as my mother prepares to get back to some semblance of a normal life.
I thank God for this wonderful outcome!
As for me, next week involves two doctor's visits - Wednesday and Friday as efforts continue to make sure that I stay as healthy as possible. I noticed one major thing today. Having been in the hospital from 10:30 this morning until 6:00 tonight, my eyes were somewhat sore most of the time. When we went to my sister's house later on, there was no problem with my eyes. The major difference being that the hospital constanyly had air flowing and maintained a somewhat dry environment while that did not exist at my sister's place. The same can be said for the situation here at home such that I do not have problems with my eyes whereby I must continually fill them with drops.
Thus, the comfort level is there. However, as the day wears on and I keep loading up my eyes with drops of one kind or another, they tend to get blurrier and blurrier. Not such that I cannot see but most certainly not as clear as they used to be or even as clear as they were when I got up in the morning.
How long will this situation last? I don't know. For sure I'll get an update on the 18th.
My life continues to be run by doctors.
At least I have a life...
Bob
My mother survived her surgery today as the surgeon was more than pleased by the fact that she is such a fighter. First we talked to the surgeon after the procedure and he said that everything went as it should, That was good news! Then we went to see my mother in the recovery room shortly afterwards and she was both awake and alert - much better than what we had been prepared to see.
We left the hospital shortly thereafter as she needed her rest. Our plan is to go visit with her on Sunday - which is Mother's Day. My sister, who lives much closer to her than we do, will visit with her over the next few days.
What's next? It's get well first, then rehab, and finally home. Certainly the desired path that we all wished to see - but not necessarily the one that we expected to see. So, good news in this regard as my mother prepares to get back to some semblance of a normal life.
I thank God for this wonderful outcome!
As for me, next week involves two doctor's visits - Wednesday and Friday as efforts continue to make sure that I stay as healthy as possible. I noticed one major thing today. Having been in the hospital from 10:30 this morning until 6:00 tonight, my eyes were somewhat sore most of the time. When we went to my sister's house later on, there was no problem with my eyes. The major difference being that the hospital constanyly had air flowing and maintained a somewhat dry environment while that did not exist at my sister's place. The same can be said for the situation here at home such that I do not have problems with my eyes whereby I must continually fill them with drops.
Thus, the comfort level is there. However, as the day wears on and I keep loading up my eyes with drops of one kind or another, they tend to get blurrier and blurrier. Not such that I cannot see but most certainly not as clear as they used to be or even as clear as they were when I got up in the morning.
How long will this situation last? I don't know. For sure I'll get an update on the 18th.
My life continues to be run by doctors.
At least I have a life...
Bob
May 4, 12:30 AM
Wait until Thursday!
My mother(and us) must now wait until Thursday for her surgery. And then it's supposed to be as minimally imvasive as possible! What does that mean? The problems aren't fixed? Don't do anything that could possibly cause a fatality? What will life be like for her afterwards?
Unfortunately, I don't live as near to my mother as my sister does. And, when she visits the hospital - as she does every day = the doctor is conveniently not there for her to ask any questions. My mother, on the other hand, implicitly trusts the doctor's judgement and will not ask any questions.
What's going to happen is anybody's guess. We're going to have to take it day-by-day and see how things unfold - maybe a better word is unravel - since the surgery is not an option. On the plus side, she is feeling better.
So, tomorrow, we go to a friend's house and replace their vanity. On Thursday, it's the hospital. Thereafter, I don't know.
I'm feeling fine. As I said before, there are so-so days and good days for my eyes. Today was somewhere in between. But, overall, I feel fine. In fact, when I was walking on the treadmill the past two days, it did not seem as daunting as it had been. So, maybe things are looking up in other areas.
As with everything, it's all in God's hands...
Bob
My mother(and us) must now wait until Thursday for her surgery. And then it's supposed to be as minimally imvasive as possible! What does that mean? The problems aren't fixed? Don't do anything that could possibly cause a fatality? What will life be like for her afterwards?
Unfortunately, I don't live as near to my mother as my sister does. And, when she visits the hospital - as she does every day = the doctor is conveniently not there for her to ask any questions. My mother, on the other hand, implicitly trusts the doctor's judgement and will not ask any questions.
What's going to happen is anybody's guess. We're going to have to take it day-by-day and see how things unfold - maybe a better word is unravel - since the surgery is not an option. On the plus side, she is feeling better.
So, tomorrow, we go to a friend's house and replace their vanity. On Thursday, it's the hospital. Thereafter, I don't know.
I'm feeling fine. As I said before, there are so-so days and good days for my eyes. Today was somewhere in between. But, overall, I feel fine. In fact, when I was walking on the treadmill the past two days, it did not seem as daunting as it had been. So, maybe things are looking up in other areas.
As with everything, it's all in God's hands...
Bob
May 2, 2011 1:30 AM
A bad day, a good day!
Tha bad day does not refer to me, but to my mother. She has been battling cancer for four years now with some of that time spent with the disease in remission. In any case, it's return during the past year has caused her to have to undergo renewed chemo therapy and even radiation. Unfortunately, the radiation has caused some severe side effects that have forced her to enter the hospital.
A cat scan has revealed that the radiation has fused part of her intestines together such that, unless she has surgery to remove the blockage, she will have to remain bedridden for the rest of her life! Needless to say, she has lost a lot of weight because of this problem. And, with her being very frail, we(my sister and I) wonder about her ability to survive the procedure - whatever it may be. My mother will go forward with it as she, obviousy, has no other choice. So, either Monday or Tuesday, will see the occurrence of the operation and, hopefully, the end of the blockage and not my mother. Please keep her in your prayers.
The good part(s) were seeing one of my granddaughters play soccer - though in a losing cause and then, after visiting with my mother, going out to dinner with my sister and brother-in-law at the restaurant where one of my nieces works as the bartender. We had a good time eating at the bar a conversing with my niece as she waited on customers - even watching her venture out into the parking lot to corral a customer who tried to leave without paying!
As for me, it's still the eyes. They seem to be somewhat better. However, there are good days and days that are not quite as good. Today was a good day which I will gratefully take.
Also, over the past few days, we enjoyed the company of my grandson and had friends for dinner (including my son and his daughters). These days and times are all things that have been gifts to me (and, I suppose, to them as well) as I am still around to be a part of their lives.
I guess that it's somewhat like Christmas - lot's of gifts (days) with some of them being better than the others.
But, there always seems to be one more and you can't wait to unwrap it...
Bob
Please pray for my mother(Barbara).
Tha bad day does not refer to me, but to my mother. She has been battling cancer for four years now with some of that time spent with the disease in remission. In any case, it's return during the past year has caused her to have to undergo renewed chemo therapy and even radiation. Unfortunately, the radiation has caused some severe side effects that have forced her to enter the hospital.
A cat scan has revealed that the radiation has fused part of her intestines together such that, unless she has surgery to remove the blockage, she will have to remain bedridden for the rest of her life! Needless to say, she has lost a lot of weight because of this problem. And, with her being very frail, we(my sister and I) wonder about her ability to survive the procedure - whatever it may be. My mother will go forward with it as she, obviousy, has no other choice. So, either Monday or Tuesday, will see the occurrence of the operation and, hopefully, the end of the blockage and not my mother. Please keep her in your prayers.
The good part(s) were seeing one of my granddaughters play soccer - though in a losing cause and then, after visiting with my mother, going out to dinner with my sister and brother-in-law at the restaurant where one of my nieces works as the bartender. We had a good time eating at the bar a conversing with my niece as she waited on customers - even watching her venture out into the parking lot to corral a customer who tried to leave without paying!
As for me, it's still the eyes. They seem to be somewhat better. However, there are good days and days that are not quite as good. Today was a good day which I will gratefully take.
Also, over the past few days, we enjoyed the company of my grandson and had friends for dinner (including my son and his daughters). These days and times are all things that have been gifts to me (and, I suppose, to them as well) as I am still around to be a part of their lives.
I guess that it's somewhat like Christmas - lot's of gifts (days) with some of them being better than the others.
But, there always seems to be one more and you can't wait to unwrap it...
Bob
Please pray for my mother(Barbara).
April 27, 2011 11:50 PM
It's been a few days!
But, nothing of any real interest has occurred until today. I found out that, indeed, one of the people who participated in our bome marrow drives over the past two years has been called to be a donor. What a thrill that must be! And, once again, to think that another life can be saved because of what happened to me! God has shown that there is truly an ongoing purpose to be recognized as part of the outcome of my situation.
That purpose was further fortified when one of my "First Connection" callers called me back today to discuss the next step in his treatment protocol - the bone marrow transplant. His doctors have been reciting statistics to him that don't paint the rosiest of pictures and he needed to have some additional questions answered. In any case, he has decided to go forward with the transplant because he has been informed that a failure to do so will, undoubtedly, lead to a recurrance of the disease.
so, after three days of "normal" living whereby any thoughts of and reference to my diseased past were nicely packed away - the opportunity to hear good news and to help another brings back all the good things that have resulted from all of this.
Believe me, I appreciate just moving on with my life with only the constant pouring of eyedrops into my eyes serving as a reminder of where I am. But it's nice to know that in some small way I have been able to help others. I have been put in a place and doing things that I never would have thought I would be doing. All of which have been satisfying to me because it has given my life additional significance and meaning. I have been so blessed.
So much for how we plan our lives...
Bob
But, nothing of any real interest has occurred until today. I found out that, indeed, one of the people who participated in our bome marrow drives over the past two years has been called to be a donor. What a thrill that must be! And, once again, to think that another life can be saved because of what happened to me! God has shown that there is truly an ongoing purpose to be recognized as part of the outcome of my situation.
That purpose was further fortified when one of my "First Connection" callers called me back today to discuss the next step in his treatment protocol - the bone marrow transplant. His doctors have been reciting statistics to him that don't paint the rosiest of pictures and he needed to have some additional questions answered. In any case, he has decided to go forward with the transplant because he has been informed that a failure to do so will, undoubtedly, lead to a recurrance of the disease.
so, after three days of "normal" living whereby any thoughts of and reference to my diseased past were nicely packed away - the opportunity to hear good news and to help another brings back all the good things that have resulted from all of this.
Believe me, I appreciate just moving on with my life with only the constant pouring of eyedrops into my eyes serving as a reminder of where I am. But it's nice to know that in some small way I have been able to help others. I have been put in a place and doing things that I never would have thought I would be doing. All of which have been satisfying to me because it has given my life additional significance and meaning. I have been so blessed.
So much for how we plan our lives...
Bob
April 23, 2011 11:45 PM
Preparing for the big day!
Tomorrow is Easter Sunday - the holiest day on our Christion calendar and the culmination of several days of preparation commemorating the Last Supper and The Crucifixion of our Jesus. Tonight, for many, is the most significant service of the year - the Easter Vigil. However, I have a hard time accepting this service as it embraces the concept that the third day after the crucifiction has begun at sundown and that Jesus, has therefore, already risen from the dead giving cause for great celebration.
This may be true as nobody knows exactly when Jesus did arise from the dead. However, in the Bible it states that the confirmation of his departure from the tomb was only realized on the morning of the third day when the women went there to pay their respects. Therefore, for me, going to the Saturday night service would do nothing but diminish the significance of Easter Sunday by usurping that service as being the true celebration of Jesus' rising from the dead.
Tomorrow, of course, it is off to church to celebrate. The choir will sing the Hallelujah Chorus from Handel's Messiah - always a crowd pleaser and always fun to sing. Then ity is off to my sister-in-law's house for a family gathering. Hopefully, the weather cooperates as it was nothing but misewrable today - cold and rainy. Another year with no spring. But, once again, I can't complain as it is another year of life for me.
Not much else to report as I have spent my evenings at church and my days at home as the weather has been so-so.
Let me close by wishing everyone a "Happy Easter" as we celebrate the true meaning of God's gift to us...
Bob
Tomorrow is Easter Sunday - the holiest day on our Christion calendar and the culmination of several days of preparation commemorating the Last Supper and The Crucifixion of our Jesus. Tonight, for many, is the most significant service of the year - the Easter Vigil. However, I have a hard time accepting this service as it embraces the concept that the third day after the crucifiction has begun at sundown and that Jesus, has therefore, already risen from the dead giving cause for great celebration.
This may be true as nobody knows exactly when Jesus did arise from the dead. However, in the Bible it states that the confirmation of his departure from the tomb was only realized on the morning of the third day when the women went there to pay their respects. Therefore, for me, going to the Saturday night service would do nothing but diminish the significance of Easter Sunday by usurping that service as being the true celebration of Jesus' rising from the dead.
Tomorrow, of course, it is off to church to celebrate. The choir will sing the Hallelujah Chorus from Handel's Messiah - always a crowd pleaser and always fun to sing. Then ity is off to my sister-in-law's house for a family gathering. Hopefully, the weather cooperates as it was nothing but misewrable today - cold and rainy. Another year with no spring. But, once again, I can't complain as it is another year of life for me.
Not much else to report as I have spent my evenings at church and my days at home as the weather has been so-so.
Let me close by wishing everyone a "Happy Easter" as we celebrate the true meaning of God's gift to us...
Bob
April 21, 2011 12:35 AM
Over three hours!
That's the amount of time I spent in the dentist's chair today as I started the process to put in three crowns. Thank God they were all in the same area in my mouth so that I can still eat using the other side of my mouth. Fortunately, I am not bothered by any of the procedures at the dentist's office. Sure my mouth is a little sore, but it's a small price to pay for getting your mouth back in shape.
More amazingly, I received an Easter card from the prayer ministry at Christ Episcopal Church in Ansonia Connecticutt. In truth, it's not so amazing, these wonderful people continue to send me cards and let me know that I am on their prayer list. I know that they are one of several prayer groups that have me on their list. But, I want to single them out for their thoughtfulness. Their cards always provide a lift whenever I receive them.
Otherwise, my eyes seem to be doing much better and my wife is convinced that that is true because they just look better to her. In any case, the irritation seems to have diminished though my eyesight continues to be the same in my opinion.
No other ailments to report as Holy Week lauches into full force with Maundy Thursday commencing the first of four days of church services.
This is what our faith is all about...
Bob
That's the amount of time I spent in the dentist's chair today as I started the process to put in three crowns. Thank God they were all in the same area in my mouth so that I can still eat using the other side of my mouth. Fortunately, I am not bothered by any of the procedures at the dentist's office. Sure my mouth is a little sore, but it's a small price to pay for getting your mouth back in shape.
More amazingly, I received an Easter card from the prayer ministry at Christ Episcopal Church in Ansonia Connecticutt. In truth, it's not so amazing, these wonderful people continue to send me cards and let me know that I am on their prayer list. I know that they are one of several prayer groups that have me on their list. But, I want to single them out for their thoughtfulness. Their cards always provide a lift whenever I receive them.
Otherwise, my eyes seem to be doing much better and my wife is convinced that that is true because they just look better to her. In any case, the irritation seems to have diminished though my eyesight continues to be the same in my opinion.
No other ailments to report as Holy Week lauches into full force with Maundy Thursday commencing the first of four days of church services.
This is what our faith is all about...
Bob
April 18, 2011 11:55 PM
There seems to be improvement! My eyes seem to be doing better. My wife thinks that they are definitely more open than before and I can feel that they do not hurt as much. Maybe we've turned a corner. Of course, only my doctor can really assess any changes. Today was blood pressure day at the senior center. Every Monday 1:30 to 2:30(though I don't go every Monday because I play bridge on alternating Mondays). Anyway, my pressure is down to 128 over 84 so I guess that the little bit of medication that I take is doing its job. What else has happened over the past few days? We froze on Saturday watching one of my granddaughters play soccer. Spring has been slow to arrive though we did our bit to hasten it on Sunday by cleaning out our back patio area and planting some flowers. Along with our crocuses, the daffodils are now blooming as well. So, even though the weather has been a bit nippy, the flowers persevere anyway. I have to admit that old age and/or the bone marrow transplant are catching up with me as went went out to our local arena on Saturday night and it was a chore to walk up hill from where we parked the car to the arena. I never thought that this would be the case given the fact that I have been walking a mile and a half 4 times a week for over two months now. I guess that I can take some solace in that my wife said that she was winded as well and she goes to the gym 3 times a week. I suppose that I should complain and that I should just adjust to whatever life feeds me at this point in time since I'm not living on my time anymore. However, it is eyeopening to see just how much we change as we get older. All the things that we kidded our parents about have been taken from their shoulders and been bequeathed to us. Holy week began yesterday with Palm Sunday. This is the most intense week for the choir as we rehearse on Tuesday night and sing on Thursday, Friday, Saturday, and Sunday. A long stretch but it is a pleasure to sing. Yesterday's anthems went well. We can only hope and pray that the remaining ones are just as good. God will provide... Bob
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