It was a perfect day!
Weatherwise, you couldn't ask for more and companywise you couldn't either. We were at the lake for lunch and dinner and kind of sat around, played cards, and talked(as us old folks are wont to do).
We just got home a little while ago. Just trying to maximize the lake experience by staying as long as we could.
My health is great and, as long as I don't become a sun worshiper, it'll stay that way. Sunburn is a definite no-no!
I don't have much else to say about the day other than it was really great and it makes one glad to be alive!
It sure does...
Bob
July 31, 2009 10:35 PM
Wow! July is all done! We are beginning to look at the back side of summer(if you can call what we've had for weather summer!).
With July done, I look at mid-August as the halfway point through my 12 month(at least) odyssey. It's hard to believe that it's not even 6 months since I had the bone marrow transplant. I've felt great the entire time and yet the doctor is totally unwilling to release the reins in any way. This situation gets very frustrating for me because no one can really come up with any reasons why I can't do more except to say that the recovery period is the same no matter how good or bad it goes.
For today's activity, I used the usual rainy day to just about wrap up my bathroom paint job. On Monday, I will complete the task and later on move on to our bedroom. As we all know, the list of tasks never ends. No sooner complete one, then two more get added on.
Tomorrow is supposed to be a beautiful day(I'll believe it when I see it!) and we are headed to the lake for the day. On Sunday, we'll celebrate my grandson's 13th birthday which is actually on Wednesday. A teenager! Where does the time go? It seems like only yesterday that he was just a baby.
He's off to baseball camp next week so he'll be staying with us for a few days because we live closer to the ballpark and it's easier for us to give him rides back and forth.
Not a very newsworthy entry, I admit. But that's the news of the day which is always accompanied by my stating that I am feeling great!
This is about it for now...
Bob
With July done, I look at mid-August as the halfway point through my 12 month(at least) odyssey. It's hard to believe that it's not even 6 months since I had the bone marrow transplant. I've felt great the entire time and yet the doctor is totally unwilling to release the reins in any way. This situation gets very frustrating for me because no one can really come up with any reasons why I can't do more except to say that the recovery period is the same no matter how good or bad it goes.
For today's activity, I used the usual rainy day to just about wrap up my bathroom paint job. On Monday, I will complete the task and later on move on to our bedroom. As we all know, the list of tasks never ends. No sooner complete one, then two more get added on.
Tomorrow is supposed to be a beautiful day(I'll believe it when I see it!) and we are headed to the lake for the day. On Sunday, we'll celebrate my grandson's 13th birthday which is actually on Wednesday. A teenager! Where does the time go? It seems like only yesterday that he was just a baby.
He's off to baseball camp next week so he'll be staying with us for a few days because we live closer to the ballpark and it's easier for us to give him rides back and forth.
Not a very newsworthy entry, I admit. But that's the news of the day which is always accompanied by my stating that I am feeling great!
This is about it for now...
Bob
July 30, 2009 11:00 PM
It was an uneventful day!
I spent the bulk of my time painting my bathroom. It's great to see things can be spruced up with nothing more than a coat of paint. We bought some paint for our bedroom which I will start on sometime next week. I anticipate finishing the bathroom early in the week.
A nurse called from Dana-Farber to say that my creatinine was a little high which indicates that I should be drinking more water. When I informed the nurse that I was already drinking at least 80 ounces a day, she backed off somewhat because that is more than enough for one day. Since the situation arises as a direct result of the immuno-suppressants and I am cutting my dosage once again, we decided to just watch it for a month and see what things look like at the end of August. It's funny, but the solution to the problem is to get me off the drugs-not to simply keep on drinking more water. In a few months, hopefully, it will be a moot point as I should be off of the drugs.
I also asked her about the fact that my counts have remained rock solid. She said that, normally, they fluctuate up and down and, if someone gets an infection or has graft vs host disease symptoms and requires additional drugs these contribute all the more to the fluctuations. My case is highly unusual in that my counts quickly shot up to acceptable levels and have stayed there for months! This is a good indication that the bone marrow transplant is working like a charm.
But, as with the doctor, she said that they like to have patients like me because it makes their job that much easier. As she said, "it's all about us" :)
The people at Dana-Farber have been fabulous...
Bob
I spent the bulk of my time painting my bathroom. It's great to see things can be spruced up with nothing more than a coat of paint. We bought some paint for our bedroom which I will start on sometime next week. I anticipate finishing the bathroom early in the week.
A nurse called from Dana-Farber to say that my creatinine was a little high which indicates that I should be drinking more water. When I informed the nurse that I was already drinking at least 80 ounces a day, she backed off somewhat because that is more than enough for one day. Since the situation arises as a direct result of the immuno-suppressants and I am cutting my dosage once again, we decided to just watch it for a month and see what things look like at the end of August. It's funny, but the solution to the problem is to get me off the drugs-not to simply keep on drinking more water. In a few months, hopefully, it will be a moot point as I should be off of the drugs.
I also asked her about the fact that my counts have remained rock solid. She said that, normally, they fluctuate up and down and, if someone gets an infection or has graft vs host disease symptoms and requires additional drugs these contribute all the more to the fluctuations. My case is highly unusual in that my counts quickly shot up to acceptable levels and have stayed there for months! This is a good indication that the bone marrow transplant is working like a charm.
But, as with the doctor, she said that they like to have patients like me because it makes their job that much easier. As she said, "it's all about us" :)
The people at Dana-Farber have been fabulous...
Bob
July 29, 2009 9:45 PM
I am at a loss for words!
We made the monthly pilgrimage to the clinic today. When we reached the doctor's office and he looked at my blood counts, he commented that they were "amazingly" stable. Why me? Why has my journey through all of this defied the odds and surprised the doctors? As I write this, I have never felt the hand of God on me more than I do right now. It is inescapable! I am not supposed to feel this way! I am supposed to be exhibiting some graft vs host symptoms - especially as my immuno-suppressant dosage continues to be diminished. But it doesn't happen!
Of course, the bottom line from the visit is that the weaning process continues for the month of August as my 1 mg of Pro Graf twice a day is now cut to .5 mg twice a day. In a nutshell, the doctor, quite obviously, was more than pleased to meet with a patient that is doing so well.
We did ask the doctor a few questions. The answers are....
- no dentist until the 12 month period is over. Boy, is my mouth going to be a piece of work by the time next February rolls around!
- my current local doctor is retiring, I am not to seek a replacement until the 12 month period is over. My Dana-Farber doctor will handle all of my medical issues until then. This is certainly no problem as I have no other medical issues that I know of!
- the reason why there is not alcohol allowed is that alcohol is a drug and can interreact with the other drugs that I am taking in an unknown way. This is coupled with the fact that the alcohol will not be consumed on a regular basis which makes it's consumption harder to manage. However, the doctor was not willing to accept my offer to have two drinks every day at 5:00!
- I am not to get flu shots until the 12 month period is over. The doctor says that with my being on immuno-suppressants, they won't work and it will be just a waste of time. For me, the way to keep from getting the flu is to avoid people and limit the risk!
The mechanics of the visit went fine. My blood was taken immediately and we were ushered into the doctor's office right on time. The ride to and from the clinic was great - summertime traffic is less.
In conclusion, for me it's been a somewhat emotional day as I still try to fathom why I have weathered this process so well. I am not complaining mind you but I keep wrestling with it in my mind as I try to figure it out.
I can't...
Bob
We made the monthly pilgrimage to the clinic today. When we reached the doctor's office and he looked at my blood counts, he commented that they were "amazingly" stable. Why me? Why has my journey through all of this defied the odds and surprised the doctors? As I write this, I have never felt the hand of God on me more than I do right now. It is inescapable! I am not supposed to feel this way! I am supposed to be exhibiting some graft vs host symptoms - especially as my immuno-suppressant dosage continues to be diminished. But it doesn't happen!
Of course, the bottom line from the visit is that the weaning process continues for the month of August as my 1 mg of Pro Graf twice a day is now cut to .5 mg twice a day. In a nutshell, the doctor, quite obviously, was more than pleased to meet with a patient that is doing so well.
We did ask the doctor a few questions. The answers are....
- no dentist until the 12 month period is over. Boy, is my mouth going to be a piece of work by the time next February rolls around!
- my current local doctor is retiring, I am not to seek a replacement until the 12 month period is over. My Dana-Farber doctor will handle all of my medical issues until then. This is certainly no problem as I have no other medical issues that I know of!
- the reason why there is not alcohol allowed is that alcohol is a drug and can interreact with the other drugs that I am taking in an unknown way. This is coupled with the fact that the alcohol will not be consumed on a regular basis which makes it's consumption harder to manage. However, the doctor was not willing to accept my offer to have two drinks every day at 5:00!
- I am not to get flu shots until the 12 month period is over. The doctor says that with my being on immuno-suppressants, they won't work and it will be just a waste of time. For me, the way to keep from getting the flu is to avoid people and limit the risk!
The mechanics of the visit went fine. My blood was taken immediately and we were ushered into the doctor's office right on time. The ride to and from the clinic was great - summertime traffic is less.
In conclusion, for me it's been a somewhat emotional day as I still try to fathom why I have weathered this process so well. I am not complaining mind you but I keep wrestling with it in my mind as I try to figure it out.
I can't...
Bob
July 28, 2009 11:15 PM
We're off to see the doctor!
Up at 5 AM, out at 5:30, in Boston by 7. That's the routine. It's hard to believe that it's been 5 weeks since my last visit to Dana-Farber. Five weeks is a long time, but it seems like we were just there. I suppose that's good because maybe, just maybe, the remaining months will fly by as well. Of course, summer always seems to fly by while winter just keeps wanting to hang around.
Speaking of summer, it's finally arrived. Temperatures in the 90s with the humidity there as well. We'll see how long it lasts. The thunder showers that we were supposed to get the past few days have avoided us and done their damage elsewhere as we see from the TV news.
I did forget to mention yesterday that I won one more little battle. My long term disability check was directly deposited to my account - finally! If you recall, my first attempt was disallowed because I was supposedly not the primary account owner. However, no one else ever had any problems with EFT depositing before, so I figured that persistence will out and that I would eventually succeed. Fortunately, it came to pass. It's such a convenience.
So, tomorrow will generate some real news that I am looking forward to. I hope that some of you are interested as well.
Til then...
Bob
Up at 5 AM, out at 5:30, in Boston by 7. That's the routine. It's hard to believe that it's been 5 weeks since my last visit to Dana-Farber. Five weeks is a long time, but it seems like we were just there. I suppose that's good because maybe, just maybe, the remaining months will fly by as well. Of course, summer always seems to fly by while winter just keeps wanting to hang around.
Speaking of summer, it's finally arrived. Temperatures in the 90s with the humidity there as well. We'll see how long it lasts. The thunder showers that we were supposed to get the past few days have avoided us and done their damage elsewhere as we see from the TV news.
I did forget to mention yesterday that I won one more little battle. My long term disability check was directly deposited to my account - finally! If you recall, my first attempt was disallowed because I was supposedly not the primary account owner. However, no one else ever had any problems with EFT depositing before, so I figured that persistence will out and that I would eventually succeed. Fortunately, it came to pass. It's such a convenience.
So, tomorrow will generate some real news that I am looking forward to. I hope that some of you are interested as well.
Til then...
Bob
July 27, 2009 11:10 PM
Not much to say today!
I did my painting as I promised myself that I would. Tomorrow will be more.
But, other than that, it was a quiet day. Uneventful as they say. Looking forward to Wednesday so that I can, hopefully, take the next step and continue my weaning from the immuno-suppressants. There have really been no signs of graft vs host disease. The doctor said initially that if graft vs host disease would appear, it would be in the about 3 months after the transplant. For me nothing has appeared. In my ignorance, I am assuming that the worst(!) is now over and that it will be all downhill from here.
For me, there is another element to not having graft vs host disease and that is that I do not have to make the decision as to whether or not I wished to take part in the clinical trial of a new drug that is being developed to relieve the symptoms of the GvH disease. I was somewhat reluctant to do so because known side effects of the drug were devastating - death, brain damage, etc. Admittedly, this happened in only a very small percentage of cases, but I was very leery of taking the risk.
I am sure that the side effects from the drugs that I am taking offer similar opportunities(!). But the difference is that I have to take these - I have no choice. I have never looked up the side effects because I didn't want to know. Ignorance is bliss as "they" say.
Fortunately, I have suffered no side effects of any consequence.
The miracle keeps on rolling day after day after day...
Bob
I did my painting as I promised myself that I would. Tomorrow will be more.
But, other than that, it was a quiet day. Uneventful as they say. Looking forward to Wednesday so that I can, hopefully, take the next step and continue my weaning from the immuno-suppressants. There have really been no signs of graft vs host disease. The doctor said initially that if graft vs host disease would appear, it would be in the about 3 months after the transplant. For me nothing has appeared. In my ignorance, I am assuming that the worst(!) is now over and that it will be all downhill from here.
For me, there is another element to not having graft vs host disease and that is that I do not have to make the decision as to whether or not I wished to take part in the clinical trial of a new drug that is being developed to relieve the symptoms of the GvH disease. I was somewhat reluctant to do so because known side effects of the drug were devastating - death, brain damage, etc. Admittedly, this happened in only a very small percentage of cases, but I was very leery of taking the risk.
I am sure that the side effects from the drugs that I am taking offer similar opportunities(!). But the difference is that I have to take these - I have no choice. I have never looked up the side effects because I didn't want to know. Ignorance is bliss as "they" say.
Fortunately, I have suffered no side effects of any consequence.
The miracle keeps on rolling day after day after day...
Bob
July 26, 2009 9:10 PM
Everything in moderation!
So I moderated today and only did a little bit of prep work to set up for painting which I will do tomorrow - this I have promised myself! Not that I don't have lots of time but when the job is staring me in the face, I like to get it done.
Quite a muggy day today but we did go for a walk this evening anyway. It's always nice to stretch the legs. It hasn't been much of a summer so far - nothing but rain. And this week promises to be no different with showers in the forecast for every day. Painting seems like the appropriate activity to occupy those rainy days.
Healthwise, I'm still feeling fine and preparing myself for the doctor's visit on Wednesday. We still have to get up at 5 AM - but since it's only once a month there really is not much to gripe about.
It does feel nice to be able to have the luxury to put off an activity until the next day because you still have plenty of time on your side. Nine months ago, I could never have said that. Who knew how much time I had?
When you have your health, you have everything...
Bob
So I moderated today and only did a little bit of prep work to set up for painting which I will do tomorrow - this I have promised myself! Not that I don't have lots of time but when the job is staring me in the face, I like to get it done.
Quite a muggy day today but we did go for a walk this evening anyway. It's always nice to stretch the legs. It hasn't been much of a summer so far - nothing but rain. And this week promises to be no different with showers in the forecast for every day. Painting seems like the appropriate activity to occupy those rainy days.
Healthwise, I'm still feeling fine and preparing myself for the doctor's visit on Wednesday. We still have to get up at 5 AM - but since it's only once a month there really is not much to gripe about.
It does feel nice to be able to have the luxury to put off an activity until the next day because you still have plenty of time on your side. Nine months ago, I could never have said that. Who knew how much time I had?
When you have your health, you have everything...
Bob
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