Gonna be quick about this entry as it's halftime during the football game. Also, there really is not a whale of new information that I can share with you.
About the only thing that I still find aggravating is the fact that my taste buds have not as yet come back fully. After eating certain foods, I am sometimes left with a lousy taste in my mouth for hours afterwards and there is nothing that seems to make it go away. Today, the chief offender was potato chips. Hopefully this will dissipate over the next week or so as seemed to happen after the first round of chemo.
Other than that, I feel fine. But sitting down to eat with a lousy taste in your mouth does not make the meal very appetizing. I guess that this is just another hurdle that I'll have to overcome.
Now it's time to get back to the game, so I'll close out the entry for today.
Bob
January 2, 2009 10:10 PM
Gotta remember it's 2009 - not 2008. Still somewhat of a challenge.
Good news! My pulmonary is perfect!!!!!
Boy, they have your breathing in and breathing out every last bit of air that you possibly can for 4 different tests. The first 3 basically are used to provide parameters for the fourth one which is the only test of interest to the doctors. The set for the last test is a computer screen with 2 lines on it. One with the ideal amount of air that your should exhale and the second one 10% below the first. The line determinations are made from the results of the first 3 as I mentioned above. For the last test, you take as deep a breath as you possibly can; then you exhale as fast as you can; and then push out every last air molecule that's in your lungs. And you have to continue the test until you exceed the 10% line!
The bottom line is that the tests check out lung capacity and lung flexibility. Having done very well, I guess that I thank our church choir director for stressing how to properly breathe when singing because it does make a big difference in how much air you can take in and how well you can sustain a note when breating out having once taken a full breath. Thanks Mark!
So the first time, I exhausted myself and exceeded the ideal line! And guess what? You get to do it a second time because they have to make sure that the first result wasn't a fluke! That time I hit the ideal line and I was done... through... finished... exhausted... I don't know if I could have done it a third time.
But the real purpose of the test is not to see that my lungs are perfect - nor is it to simply satisfy an insurance company requirement. The real purpose is to get a baseline of how my lungs normally perform. The reason being that some of the medication that I have to take after the transplant could possibly affect the performance of my lungs. So, 6 weeks after the transplant, I will have to undergo this test again to see how I literally measure up at that time.
As for my counts from this morning, everything was above the threshhold levels so I needed nothing! This meant that we went home early and was also an indication that, overall, my counts are starting to rise again. However, my white cell count is still very low. So the nurse said that I was not allowed to go to the mall. Thank God!!!
Since a few questions have arisen that I have not directly answered let me do it now for everyone. Even though early February is the targeted bone marrow transplant date, I have not heard that there has been a determination of a specific donor. I can only infer that they must be getting close because thay wish to commit to that timeframe. Secondly, even though, at the beginning it was mentioned that they could possibly use my own marrow - that has been ruled out. Even if they take my marrow when I am in full remission(as I am now), there is now way to be 100% sure that the marrow is clean and there is no way to "decontaminate" it. So they deem the risk to be too high.
Lastly, a hair update. I know that this is an important topic for some and that I have been somewhat derilect by not providing an ongoing status. One reason is that there has been no change in the status. No additional hair loss has yet occurred after round 2 of chemo. The "peach fuzz" that I have on my head is still there. In fact my facial hair is slowly returning but I cannot shave as my counts are still too low. Maybe another week or so.
I've been rather long winded today(oh, that's a terrible, terrible pun - sorry, but I just couldn't resist). So it's time to bring the entry to a close for the day.
Bob
Good news! My pulmonary is perfect!!!!!
Boy, they have your breathing in and breathing out every last bit of air that you possibly can for 4 different tests. The first 3 basically are used to provide parameters for the fourth one which is the only test of interest to the doctors. The set for the last test is a computer screen with 2 lines on it. One with the ideal amount of air that your should exhale and the second one 10% below the first. The line determinations are made from the results of the first 3 as I mentioned above. For the last test, you take as deep a breath as you possibly can; then you exhale as fast as you can; and then push out every last air molecule that's in your lungs. And you have to continue the test until you exceed the 10% line!
The bottom line is that the tests check out lung capacity and lung flexibility. Having done very well, I guess that I thank our church choir director for stressing how to properly breathe when singing because it does make a big difference in how much air you can take in and how well you can sustain a note when breating out having once taken a full breath. Thanks Mark!
So the first time, I exhausted myself and exceeded the ideal line! And guess what? You get to do it a second time because they have to make sure that the first result wasn't a fluke! That time I hit the ideal line and I was done... through... finished... exhausted... I don't know if I could have done it a third time.
But the real purpose of the test is not to see that my lungs are perfect - nor is it to simply satisfy an insurance company requirement. The real purpose is to get a baseline of how my lungs normally perform. The reason being that some of the medication that I have to take after the transplant could possibly affect the performance of my lungs. So, 6 weeks after the transplant, I will have to undergo this test again to see how I literally measure up at that time.
As for my counts from this morning, everything was above the threshhold levels so I needed nothing! This meant that we went home early and was also an indication that, overall, my counts are starting to rise again. However, my white cell count is still very low. So the nurse said that I was not allowed to go to the mall. Thank God!!!
Since a few questions have arisen that I have not directly answered let me do it now for everyone. Even though early February is the targeted bone marrow transplant date, I have not heard that there has been a determination of a specific donor. I can only infer that they must be getting close because thay wish to commit to that timeframe. Secondly, even though, at the beginning it was mentioned that they could possibly use my own marrow - that has been ruled out. Even if they take my marrow when I am in full remission(as I am now), there is now way to be 100% sure that the marrow is clean and there is no way to "decontaminate" it. So they deem the risk to be too high.
Lastly, a hair update. I know that this is an important topic for some and that I have been somewhat derilect by not providing an ongoing status. One reason is that there has been no change in the status. No additional hair loss has yet occurred after round 2 of chemo. The "peach fuzz" that I have on my head is still there. In fact my facial hair is slowly returning but I cannot shave as my counts are still too low. Maybe another week or so.
I've been rather long winded today(oh, that's a terrible, terrible pun - sorry, but I just couldn't resist). So it's time to bring the entry to a close for the day.
Bob
January 1, 2009 9:40 PM
Wow! 2009! Thank God!
2008 couldn't end fast enough.
It was a quiet New Year's day with my brother-in-law, sister-in-law, and niece visiting. Played some cards and ordered out for food. Not super exciting. But, then again, my daily regimen is not supposed to be exciting - uneventful is what is expected. But it certainly was an enjoyable day.
Tomorrow its back to Boston for maintenance and for starting the ramp up process to the bone marrow transplant with a pulmonary test. Lord knows what's involved in that test - but I hope that my pulmonary tests out OK! I'll let you know!
So we'll see how the numbers work out in the morning and see where I am on the road to having my counts start their way back to normal levels.
Bob
2008 couldn't end fast enough.
It was a quiet New Year's day with my brother-in-law, sister-in-law, and niece visiting. Played some cards and ordered out for food. Not super exciting. But, then again, my daily regimen is not supposed to be exciting - uneventful is what is expected. But it certainly was an enjoyable day.
Tomorrow its back to Boston for maintenance and for starting the ramp up process to the bone marrow transplant with a pulmonary test. Lord knows what's involved in that test - but I hope that my pulmonary tests out OK! I'll let you know!
So we'll see how the numbers work out in the morning and see where I am on the road to having my counts start their way back to normal levels.
Bob
December 31, 2008 9:30 PM
I suppose that I should make this entry at midnight to formally close out the year at the last possible moment. However, nothing exciting is going to happen between now and then as my wife and I are at home alone with planned for company being unable to make it here because of today's snow.
Thank God 2008 is coming to a close. Besides the real estate and economic issues that affected all of us, our family had experienced near death illnesses, a severe auto accident, a death, and concluded the year with my illness - that's the downside. Pretty heavy stuff! Good events included the fact that the near death illnesses were that and nothing more (everyone is healthy now); my mother-in-law moved to a much better assisted living facility; and my wife and I went on a wonderful cruise with my brother-in-law and sister-in-law just before I was diagnosed with leukemia. In fact, the cruise actually helped to speed up the diagnosis because the others saw how I struggled at times to catch my breath and pleaded with me to see a doctor immediately upon our return. Because the disease had not had time to really put me in a debilitated state, I was best able to handle the 2 rounds of chemotherapy that I had to undergo at year's end.
However, the real blessing and high point for me this past year has been each one of you who have so faithfully kept me in your thoughts and prayers. As I have said before, it is very humbling to think that so many of you are concerned about my welfare. Words cannot express how appreciative I am and a simple thank you just does not seem to go far enough.
With the cancer in full remission at this point, I look to 2009 as the real start back to full recovery as the bone marrow transplant will take place early in the year and - according to the books - it will take another a year before I can get completely back on my feet. It will be interesting to see what my entry will be for December 31, 2009!
I want to wish each and everyone of you a happy, HEALTHY, and prosperous new year.
Gotta run back to the wild bash that's going on and see if I can stay awake until midnight!
May God bless you all!
Bob
Thank God 2008 is coming to a close. Besides the real estate and economic issues that affected all of us, our family had experienced near death illnesses, a severe auto accident, a death, and concluded the year with my illness - that's the downside. Pretty heavy stuff! Good events included the fact that the near death illnesses were that and nothing more (everyone is healthy now); my mother-in-law moved to a much better assisted living facility; and my wife and I went on a wonderful cruise with my brother-in-law and sister-in-law just before I was diagnosed with leukemia. In fact, the cruise actually helped to speed up the diagnosis because the others saw how I struggled at times to catch my breath and pleaded with me to see a doctor immediately upon our return. Because the disease had not had time to really put me in a debilitated state, I was best able to handle the 2 rounds of chemotherapy that I had to undergo at year's end.
However, the real blessing and high point for me this past year has been each one of you who have so faithfully kept me in your thoughts and prayers. As I have said before, it is very humbling to think that so many of you are concerned about my welfare. Words cannot express how appreciative I am and a simple thank you just does not seem to go far enough.
With the cancer in full remission at this point, I look to 2009 as the real start back to full recovery as the bone marrow transplant will take place early in the year and - according to the books - it will take another a year before I can get completely back on my feet. It will be interesting to see what my entry will be for December 31, 2009!
I want to wish each and everyone of you a happy, HEALTHY, and prosperous new year.
Gotta run back to the wild bash that's going on and see if I can stay awake until midnight!
May God bless you all!
Bob
December 30, 2008 11:15 PM
Late entry today - been working on a jigsaw puzzle with my wife and watching a movie. Exciting life isn't it! Though we did have some last minute visitors today and that was very refreshing as it breaks up the day and also helps to keep me informed as to what's going on in my friends lives.
As expected, we heard from Dana-Farber today concerning the bone marrow transplant. They are aiming for an early February date. That's fine with me because the earlier it begins the earlier it concludes. However, before we can commence with it, I must undergo an extensive battery of tests - not only for the doctors but also for the beloved insurance company. These tests must be done in Boston within 42 days of the transplant.
Dana Farber has been super in trying to schedule this testing as they are dovetailing the testing in with my weekly Friday visits. So, after my blood results are known and we wait the several hours while the appropriate refill items are being ordered, I will have this testing done. So Fridays will accomplish two things - keep me in maintenance mode and also ramp me up for the transplant - they're going to be busy days.
Now the testing that they want done consists of all kinds of blood tests, chest x-rays, echocardiograms, and a bunch of others that I never heard of. According to the person that called, the insurance company would also like to have a colonoscopy done as well. Kind of hard to figure out why but it sets the stage such that I won't be surprised if they also ask for a pregnancy test.
I want to offer a special thanks to my coworkers at Nortel for the Christmas card that they so kindly made(thanks Beth) and signed for encouraging and supportive messages. This is the second time that they have done this and it really brightens my day to know that in spite of all the things that are going there, they still take the time to think of me. It is still rather humbling and much appreciated.
Thanks again to all you for your support.
Bob
As expected, we heard from Dana-Farber today concerning the bone marrow transplant. They are aiming for an early February date. That's fine with me because the earlier it begins the earlier it concludes. However, before we can commence with it, I must undergo an extensive battery of tests - not only for the doctors but also for the beloved insurance company. These tests must be done in Boston within 42 days of the transplant.
Dana Farber has been super in trying to schedule this testing as they are dovetailing the testing in with my weekly Friday visits. So, after my blood results are known and we wait the several hours while the appropriate refill items are being ordered, I will have this testing done. So Fridays will accomplish two things - keep me in maintenance mode and also ramp me up for the transplant - they're going to be busy days.
Now the testing that they want done consists of all kinds of blood tests, chest x-rays, echocardiograms, and a bunch of others that I never heard of. According to the person that called, the insurance company would also like to have a colonoscopy done as well. Kind of hard to figure out why but it sets the stage such that I won't be surprised if they also ask for a pregnancy test.
I want to offer a special thanks to my coworkers at Nortel for the Christmas card that they so kindly made(thanks Beth) and signed for encouraging and supportive messages. This is the second time that they have done this and it really brightens my day to know that in spite of all the things that are going there, they still take the time to think of me. It is still rather humbling and much appreciated.
Thanks again to all you for your support.
Bob
December 29, 2008 9:40 PM
There was no entry for yesterday as I really did not have much to say and I was somewhat bummed by the fact that the Patriots won but the Jets played like to Jets of the last 5 games and not the first 11. Good season for the Pats and nothing to be embarrased about - especially with all the injuries.
So......
today was the first day at the Norris Cotton clinic in Manchester. We have to iron out a few kinks - but, in general, it went well. They have very few patients who have a Hickman catheter and it took the nurse a little while to get used to the care and feeding of it. With some instruction from me we got through it. However, after initially doing the blood draw, she had to come back to me and do it once again as she had not taken enough tubes.
The good news was that everything was in order with the exception of my platelets count which was very low - and expected to be that way! So they had to call to a local hospital to get them. Since this was going to take a few hours, it offered us the opportunity to go home and return later. This is such a boon as compared to having to sit in the clinic waiting room in Boston until the proper medication arrives.
All in all, the nurses in the infusion area were very pleasant and professional and the facility was very nice. So, I think that the next few weeks will go a lot better.
While were at the clinic a phone message was left from the bone marrow doctor's office indicating that a schedule was being prepared for the transplant. Unfortunately, we could not hook up after that so I am sure that I will find out all the details tomorrow.
I have almost forgotten to once again thank the Milford NH Fire Department for a cash donation that followed up the very generous gas card donation that they made earlier. These people take giving and caring to the next level and it so often goes unnoticed - but it is surely not unappreciated. A heartfelt thanks from me goes out to all of them!
So tomoorow may be an eventful day as I, hopefully, find out what the longer term schedule will be.
All for now.....
Bob
So......
today was the first day at the Norris Cotton clinic in Manchester. We have to iron out a few kinks - but, in general, it went well. They have very few patients who have a Hickman catheter and it took the nurse a little while to get used to the care and feeding of it. With some instruction from me we got through it. However, after initially doing the blood draw, she had to come back to me and do it once again as she had not taken enough tubes.
The good news was that everything was in order with the exception of my platelets count which was very low - and expected to be that way! So they had to call to a local hospital to get them. Since this was going to take a few hours, it offered us the opportunity to go home and return later. This is such a boon as compared to having to sit in the clinic waiting room in Boston until the proper medication arrives.
All in all, the nurses in the infusion area were very pleasant and professional and the facility was very nice. So, I think that the next few weeks will go a lot better.
While were at the clinic a phone message was left from the bone marrow doctor's office indicating that a schedule was being prepared for the transplant. Unfortunately, we could not hook up after that so I am sure that I will find out all the details tomorrow.
I have almost forgotten to once again thank the Milford NH Fire Department for a cash donation that followed up the very generous gas card donation that they made earlier. These people take giving and caring to the next level and it so often goes unnoticed - but it is surely not unappreciated. A heartfelt thanks from me goes out to all of them!
So tomoorow may be an eventful day as I, hopefully, find out what the longer term schedule will be.
All for now.....
Bob
Subscribe to:
Posts (Atom)
