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
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
December 27, 2008 9:20 PM
I would say that for the first time there really is not much to say. With my counts bottoming out, I cannot go out of the house and no one stopped by - so it was a quiet day.
As they said in the hospital, an uneventful day is a good day. So, by definition, today was a good day as well.
However, we must still be ever vigilant about watching for infections and any other side effects that the chemo might bring on.
So far, so good......
Bob
As they said in the hospital, an uneventful day is a good day. So, by definition, today was a good day as well.
However, we must still be ever vigilant about watching for infections and any other side effects that the chemo might bring on.
So far, so good......
Bob
December 26, 2008 9:50 PM
Well, today was the first of the maintenance visits that must be made every Monday and Friday until I have to be readmitted to the hospital - whenever that will be! The routine went as expected. Have the blood drawn, get the results, compare the results to a set of target levels, and implement a corrective action plan. Today my hematocrit and platelets were low resulting in my getting 2 pints of blood and 1 unit of platelets. This is all to be expected as my counts are definitely starting to fall right on schedule so there is no reason to be concerned about the findings. Similar treatment was done during this timeframe after my first round of chemo when I was an inpatient. I guess that I'm beginning to become an old hand at this.
Fortunately, for me, the nurses were able to locate a chair in the clinic for me much earlier than I was originally scheduled for. This meant that we were able to leave the clinic at 1:30 and not at 3:00 having arrived in the morning just before 8:00. As you can imagine, the trip to Boston was a joy this morning as traffic was very light. However, in the afternoon, we got caught in some construction which slowed down the drive.
Since I have been home, I find that I have to be more cognizant of the time - in fact, finding myself somewhat of a slave to the clock. Because I cannot brush my teeth, I have to perform oral mouthcare. This requires that I take an antibiotic lozenge 4 times a day and use a mouthwash twice a day. Of course the rules of the game require that the mouthwashing CANNOT be at the same time that the lozenges are taken. Additionally, I have to take a general antibiotic twice a day at 12 hour intervals. So, what's the big deal you say! Well, up until the end of August I had never taken any medications and, even at that date, I only started taking a Nexium when I got up in the morning which was simple enough.
In the hospital the mouthcare was a breeze - I had nothing to do and everything was right there in the same room. Likewise, all antibiotics were administered by IV which the nurses took care of. At home, I have to be conscious of the time, stop what I am doing, go to the bathroom, and take the appropriate medication. I sometimes find myself missing the times because I have been engrossed in some other activity.
As I write this, I know that it sounds like bellyaching - and it is! For sure, if that is all that I have to worry about during the day then I have nothing to complain about. This is all true. But the concept of being so regulated by the clock is so foreign to me that it gets to me. I suppose I'll get used to it over time and it will become second nature to me. Hopefully, that will be the case.
So, on that high note, I'll bring today's entry to a close.
Bob
Fortunately, for me, the nurses were able to locate a chair in the clinic for me much earlier than I was originally scheduled for. This meant that we were able to leave the clinic at 1:30 and not at 3:00 having arrived in the morning just before 8:00. As you can imagine, the trip to Boston was a joy this morning as traffic was very light. However, in the afternoon, we got caught in some construction which slowed down the drive.
Since I have been home, I find that I have to be more cognizant of the time - in fact, finding myself somewhat of a slave to the clock. Because I cannot brush my teeth, I have to perform oral mouthcare. This requires that I take an antibiotic lozenge 4 times a day and use a mouthwash twice a day. Of course the rules of the game require that the mouthwashing CANNOT be at the same time that the lozenges are taken. Additionally, I have to take a general antibiotic twice a day at 12 hour intervals. So, what's the big deal you say! Well, up until the end of August I had never taken any medications and, even at that date, I only started taking a Nexium when I got up in the morning which was simple enough.
In the hospital the mouthcare was a breeze - I had nothing to do and everything was right there in the same room. Likewise, all antibiotics were administered by IV which the nurses took care of. At home, I have to be conscious of the time, stop what I am doing, go to the bathroom, and take the appropriate medication. I sometimes find myself missing the times because I have been engrossed in some other activity.
As I write this, I know that it sounds like bellyaching - and it is! For sure, if that is all that I have to worry about during the day then I have nothing to complain about. This is all true. But the concept of being so regulated by the clock is so foreign to me that it gets to me. I suppose I'll get used to it over time and it will become second nature to me. Hopefully, that will be the case.
So, on that high note, I'll bring today's entry to a close.
Bob
Dece4mber 25, 2008 9:45
Christmas night of a wonderful Christmas day.
First of all, going to church last night was the bittersweet experience that I knew it would. Without the ability to commingle with people, I was frustrated that I could not connect with a large number of friends and acquaintances that I had not seen for 2 months. My wife and I left at the beginning of the last hymn in order to avoid getting caught up dealing with well meaning well wishers and creating something that might quickly get out of control. The frustrations were not solely mine, however, as a friend called today to say that he made a special effort after the service to try to see me - and I was no where to be found! This is one side effect of chemo that no one really mentions and yet it seems to be the most painful of all!
As for the service, it did its job and properly set the stage for the ride home. My wife and I commented on how different and strangely quiet everything seemed to be as compared to any other night of the year.
As for the day itself, all of our children and grandchildren were here for Christmas dinner. Including other family members, there were 20 of us gathered in our home. It was a family day to focus on the good things in our lives and we did exactly that!
But, as with all large gatherings, there is a lot of work involved and at this juncture my wife is very tired. But life goes on and we have to look forward to rising early tomorrow morning to be at the hospital by 8:15. We're counting on light traffic due to the holiday and we're also counting on my counts being where they should be so that we can go home shortly thereafter.
So I'll let you all know how tomorrow turns out. Please keep me in your thoughts and prayers as there is a long way to go before this journey nears completion. Your thoughts and prayers are the greatest gift that I have ever received and very much appreciated.
I hope you all had a wonderful Christmas day!
Bob
First of all, going to church last night was the bittersweet experience that I knew it would. Without the ability to commingle with people, I was frustrated that I could not connect with a large number of friends and acquaintances that I had not seen for 2 months. My wife and I left at the beginning of the last hymn in order to avoid getting caught up dealing with well meaning well wishers and creating something that might quickly get out of control. The frustrations were not solely mine, however, as a friend called today to say that he made a special effort after the service to try to see me - and I was no where to be found! This is one side effect of chemo that no one really mentions and yet it seems to be the most painful of all!
As for the service, it did its job and properly set the stage for the ride home. My wife and I commented on how different and strangely quiet everything seemed to be as compared to any other night of the year.
As for the day itself, all of our children and grandchildren were here for Christmas dinner. Including other family members, there were 20 of us gathered in our home. It was a family day to focus on the good things in our lives and we did exactly that!
But, as with all large gatherings, there is a lot of work involved and at this juncture my wife is very tired. But life goes on and we have to look forward to rising early tomorrow morning to be at the hospital by 8:15. We're counting on light traffic due to the holiday and we're also counting on my counts being where they should be so that we can go home shortly thereafter.
So I'll let you all know how tomorrow turns out. Please keep me in your thoughts and prayers as there is a long way to go before this journey nears completion. Your thoughts and prayers are the greatest gift that I have ever received and very much appreciated.
I hope you all had a wonderful Christmas day!
Bob
December 24, 2008 9:00 PM
Tonight for me is the most moving night of the year. And it is really not the entire evening - but only a 10-15 minute time span that I find so essential that I cannot deny myself. To set the stage for this, I am going to attend the 10:30 Christmas Eve service at my church. It will be a little tough for me because the choir has a half hour music program before the actual 11:00 service begins and I will not be part of it. The service is always somewhat moving especially the singing of "Silent Night" right after communion.
But its only when I leave church and head home that the true magic and meaning of Christmas sets in. It is cold and maybe snowy, Christmas music is playing on the car radio, the streets are barren of cars and people, houses are dark, children everywhere are asleep awaiting the arrival of Santa Claus, people around the world have momentarily packed away their everyday problems in preparation to share with their families and friends the joy of Christmas and the Christmas spirit.
The world around me is eerily quiet during the drive home and I can actually experience that mystical/magical feeling of peace that is the hope of Christmas. To me, the feelings that I get during that timeframe far transcend anything that the joy of Easter offers. Easter with its "He is risen" is the promise of tomorrow. Christmas with its "Peace on earth, good will to men" is the hope for all of us for today.
Unfortunately, the moment that I get home, reality sets in as we set our sights on the activities for Christmas day. Tomorrow, everyone comes by for dinner. It will be somewhat hectic, but it will be a wonderful day.
In closing, know that I am feeling as well as I possibly can and know that I think of each of you because of your kind thoughts, prayers, and support. They serve to sustain me so well!
In the true spirit of Christmas remember the song words, "Let there be peace on earth and let it begin with me". If we could all live those words we would not be talking about the hope of Christmas - but the reality of Christmas!
Merry Christmas everyone! May it be your most joyous one ever! I know that mine will be!
Bob
But its only when I leave church and head home that the true magic and meaning of Christmas sets in. It is cold and maybe snowy, Christmas music is playing on the car radio, the streets are barren of cars and people, houses are dark, children everywhere are asleep awaiting the arrival of Santa Claus, people around the world have momentarily packed away their everyday problems in preparation to share with their families and friends the joy of Christmas and the Christmas spirit.
The world around me is eerily quiet during the drive home and I can actually experience that mystical/magical feeling of peace that is the hope of Christmas. To me, the feelings that I get during that timeframe far transcend anything that the joy of Easter offers. Easter with its "He is risen" is the promise of tomorrow. Christmas with its "Peace on earth, good will to men" is the hope for all of us for today.
Unfortunately, the moment that I get home, reality sets in as we set our sights on the activities for Christmas day. Tomorrow, everyone comes by for dinner. It will be somewhat hectic, but it will be a wonderful day.
In closing, know that I am feeling as well as I possibly can and know that I think of each of you because of your kind thoughts, prayers, and support. They serve to sustain me so well!
In the true spirit of Christmas remember the song words, "Let there be peace on earth and let it begin with me". If we could all live those words we would not be talking about the hope of Christmas - but the reality of Christmas!
Merry Christmas everyone! May it be your most joyous one ever! I know that mine will be!
Bob
December 23, 2008 9:30
The big family event for the day is that it's my mother's birthday today. Somewhat of a bummer to have your birthday 2 days before Christmas but I think that that is more than offset by the fact that she is still able to celebrate them!
Anyway, during the conversation about some of the limitations that I will face during the bone marrow transplant phase, I commented that I will initially not be able to have pastry and baked goods from the outside - thus eliminating Dunkin' Donuts doughnuts. She responded by saying, "That's OK, Nancy will make doughnuts for you!" I thought that that was a brilliant idea! However, my wife took exception to the suggestion and threatened to disown her.
They called from the hospital today and gave me my Friday appointment schedule up until January 23rd. Basically each appointment has the following format. Arrive early and have the blood work done and then look at the counts. If everything is OK, I am informed of that and can go home. If not, then whatever needs to be administered has to be ordered at that time. Then, hopefully, three hours after the blood work was done, the appropriate fluid(s) will be administered and then I get to go home. This activity could take an hour or two as well - so Fridays could possibly be very long days. Something to look forward to! Mondays will be the same except that they will be done in Manchester and not Boston. Boy, I sure hope that Santa brings me a portable game player for Christmas! More than likely, however, I'll get a month's supply of No Doz!
As a final reward for surviving all the other appointments, on the 23rd I have another bone marrow biopsy scheduled. I can hardly wait!
So, I guess that I will be home for the next month. But it is where I have to be as my counts sink once again and I really cannot be out in public until they begin to come back (obviously hospital visits are the exception). This will probably take about 3 weeks time to happen.
The other major event of the day was that I got to eat home cooked food once again - you just don't appreciate how good that is until you are deprived of it!
Until tomorrow.....
Bob
Anyway, during the conversation about some of the limitations that I will face during the bone marrow transplant phase, I commented that I will initially not be able to have pastry and baked goods from the outside - thus eliminating Dunkin' Donuts doughnuts. She responded by saying, "That's OK, Nancy will make doughnuts for you!" I thought that that was a brilliant idea! However, my wife took exception to the suggestion and threatened to disown her.
They called from the hospital today and gave me my Friday appointment schedule up until January 23rd. Basically each appointment has the following format. Arrive early and have the blood work done and then look at the counts. If everything is OK, I am informed of that and can go home. If not, then whatever needs to be administered has to be ordered at that time. Then, hopefully, three hours after the blood work was done, the appropriate fluid(s) will be administered and then I get to go home. This activity could take an hour or two as well - so Fridays could possibly be very long days. Something to look forward to! Mondays will be the same except that they will be done in Manchester and not Boston. Boy, I sure hope that Santa brings me a portable game player for Christmas! More than likely, however, I'll get a month's supply of No Doz!
As a final reward for surviving all the other appointments, on the 23rd I have another bone marrow biopsy scheduled. I can hardly wait!
So, I guess that I will be home for the next month. But it is where I have to be as my counts sink once again and I really cannot be out in public until they begin to come back (obviously hospital visits are the exception). This will probably take about 3 weeks time to happen.
The other major event of the day was that I got to eat home cooked food once again - you just don't appreciate how good that is until you are deprived of it!
Until tomorrow.....
Bob
December 22, 2008 10:00 PM
Well, it's good to be home again!
We left the hospital about noontime and stopped on the way home to have something to eat.
This time the reaction to the chemo was a little different than the first time. Nothing severe mind you. The first time, I got a fever that was easily corrected by taking 2 Tylenol. However, they assume that any fever is caused by some kind of infection and immediately load you up with antibiotic and start collecting all kinds of stuff that eminates from your body to test if that really is the case. This time, fortunately, I had no fever. But I did get a rash. The chemo, coupled with the hospital environment, dries your body out. Now that chemo is over - the rash will go away.
I said fortunately regarding the fever. Because if there were any kind of fever, they would keep me in the hospital until my counts went down to zero and returned to their normal values. This, most likely would be several weeks!
This time, the hospital visit was very frustrating at times. Especially the way the collected my "vitals". I mentioned the 10:00 arrangement that I thought I had - but that lasted only the one night and it didn't even work correctly then. Last night was a doozy - they came in at 12:45 AM to do it! Needless to say, I had been sound asleep. They also compound this by making no attempt to be quiet with anything that they do. Doors are noisily closed. Trash containers are slammed closed, etc.
Additionally, last night, someone disconnected my IV from the wall to plug in the IV for the gentleman who had come in. I found this out at 3:30AM when I awoke for a bathroom call. Fortunately, there is a battery backup. But, still, to simply unplug the cord from the wall without looking to see what it powers is a little selfish and/or shortsighted.
So everything is in place for the short term. Off to Manchester on Monday and Boston on Friday; continue my oral health care exactly as in the hospital(I am not allowed to brush my teeth as yet); and take a fairly strong antibiotic twice a day. And, of course, the usual - avoid crowds, people who have colds, flu, etc., close contact with children,... In general, anything that could possibly cause me to get an infection.
Well, it is great to be home for the holidays although they most certainly are not going to be celebrated in a fashion that we would have preferred. But I look at it positively. The disease was diagnosed before it had a chance to overrun my body and do more severe damage which could possibly have prevented the aggressive course of treatment that I am now undergoing. Secondly, with that course of treatment, I am in full remission. Thirdly, I came through the process so far with flying colors. And, lastly, I have the support of an untold number of people who continue to keep me in their prayers. I have nothing to complain about!
Sharing a hospital room is lousy for a number of reasons. But, it does put everything in perspective for me as I see other people who are not as well off as I am. I have much to be thankful for! God is good!
Bob
We left the hospital about noontime and stopped on the way home to have something to eat.
This time the reaction to the chemo was a little different than the first time. Nothing severe mind you. The first time, I got a fever that was easily corrected by taking 2 Tylenol. However, they assume that any fever is caused by some kind of infection and immediately load you up with antibiotic and start collecting all kinds of stuff that eminates from your body to test if that really is the case. This time, fortunately, I had no fever. But I did get a rash. The chemo, coupled with the hospital environment, dries your body out. Now that chemo is over - the rash will go away.
I said fortunately regarding the fever. Because if there were any kind of fever, they would keep me in the hospital until my counts went down to zero and returned to their normal values. This, most likely would be several weeks!
This time, the hospital visit was very frustrating at times. Especially the way the collected my "vitals". I mentioned the 10:00 arrangement that I thought I had - but that lasted only the one night and it didn't even work correctly then. Last night was a doozy - they came in at 12:45 AM to do it! Needless to say, I had been sound asleep. They also compound this by making no attempt to be quiet with anything that they do. Doors are noisily closed. Trash containers are slammed closed, etc.
Additionally, last night, someone disconnected my IV from the wall to plug in the IV for the gentleman who had come in. I found this out at 3:30AM when I awoke for a bathroom call. Fortunately, there is a battery backup. But, still, to simply unplug the cord from the wall without looking to see what it powers is a little selfish and/or shortsighted.
So everything is in place for the short term. Off to Manchester on Monday and Boston on Friday; continue my oral health care exactly as in the hospital(I am not allowed to brush my teeth as yet); and take a fairly strong antibiotic twice a day. And, of course, the usual - avoid crowds, people who have colds, flu, etc., close contact with children,... In general, anything that could possibly cause me to get an infection.
Well, it is great to be home for the holidays although they most certainly are not going to be celebrated in a fashion that we would have preferred. But I look at it positively. The disease was diagnosed before it had a chance to overrun my body and do more severe damage which could possibly have prevented the aggressive course of treatment that I am now undergoing. Secondly, with that course of treatment, I am in full remission. Thirdly, I came through the process so far with flying colors. And, lastly, I have the support of an untold number of people who continue to keep me in their prayers. I have nothing to complain about!
Sharing a hospital room is lousy for a number of reasons. But, it does put everything in perspective for me as I see other people who are not as well off as I am. I have much to be thankful for! God is good!
Bob
December 21, 2008 7:50 PM
1 more to go!
Even though I feel OK, I still find it disconcerting to have all that chemo pumped into my system for 5 days. However, I have to admit that I do find the results very satisfying. And…what other option do I have?
My wife did not come today because of the inclement weather, so it was a rather quiet day though I certainly did watch football. At least the door is still open for the Patriots and we have to thank Seattle for providing another opportunity.
I have a new room mate who came in about 6:00 tonight. Once again, the doctors come in and discuss the patient’s condition and the game plan with the patient and family. It makes me feel uncomfortable to have no choice but to listen to a conversation that should be held in private.
I have spoken before about the efficiency of the cafeteria service here. Whenever I order a meal, it is always an adventure as to what you are going to get. Usually the issue is that most of the time you do not get everything that you ordered but today they outdid themselves. My usual breakfast is juice, cereal, and a yogurt – today was no exception. And….wonder of wonders, I did get what I ordered. However, they supplied me with only a fork and a knife with which to eat it!
In short, I’ll really be glad to get back home tomorrow. With the holidays here, it'll be great to be home. As I said before, what’s next in the short term is simply to come in on Monday’s and Friday’s to get my counts checked and, in the longer term, to wait what is to happen with the bone marrow transplant. Of course, that is a whole new process which comes with its own unique set of issues. So, obviously I possess a level of fear and trepidation regarding this step. But I have full faith in God that things will go well. If everything up to now is a harbinger of how I will handle be able to handle that - then I should have little to worry about.
As long as I am in everyone's thoughts and prayers - things will go well!
Bob
Even though I feel OK, I still find it disconcerting to have all that chemo pumped into my system for 5 days. However, I have to admit that I do find the results very satisfying. And…what other option do I have?
My wife did not come today because of the inclement weather, so it was a rather quiet day though I certainly did watch football. At least the door is still open for the Patriots and we have to thank Seattle for providing another opportunity.
I have a new room mate who came in about 6:00 tonight. Once again, the doctors come in and discuss the patient’s condition and the game plan with the patient and family. It makes me feel uncomfortable to have no choice but to listen to a conversation that should be held in private.
I have spoken before about the efficiency of the cafeteria service here. Whenever I order a meal, it is always an adventure as to what you are going to get. Usually the issue is that most of the time you do not get everything that you ordered but today they outdid themselves. My usual breakfast is juice, cereal, and a yogurt – today was no exception. And….wonder of wonders, I did get what I ordered. However, they supplied me with only a fork and a knife with which to eat it!
In short, I’ll really be glad to get back home tomorrow. With the holidays here, it'll be great to be home. As I said before, what’s next in the short term is simply to come in on Monday’s and Friday’s to get my counts checked and, in the longer term, to wait what is to happen with the bone marrow transplant. Of course, that is a whole new process which comes with its own unique set of issues. So, obviously I possess a level of fear and trepidation regarding this step. But I have full faith in God that things will go well. If everything up to now is a harbinger of how I will handle be able to handle that - then I should have little to worry about.
As long as I am in everyone's thoughts and prayers - things will go well!
Bob
December 20, 2008 7:30 PM
3 down – 2 to go!
A really uneventful day. My wife did manage to visit today and arrived around noon time. It lightly snowed here all day and they are saying that it will start again in earnest in the early morning which will most likely prevent her from coming here tomorrow. However, the weather for Monday is projected to be good so I should get to go home as planned.
My counts are still fine and I still feel fine. So basically, my activity has been nothing but finding ways to occupy the daytime hours. And this is compounded by the fact that hospital life on the weekends is very quiet.
So I am about to watch the Dallas-Baltimore football game tonight. Hopefully the result is more to the Patriot’s favor than Thursday night’s game. Go Dallas!
Bob
A really uneventful day. My wife did manage to visit today and arrived around noon time. It lightly snowed here all day and they are saying that it will start again in earnest in the early morning which will most likely prevent her from coming here tomorrow. However, the weather for Monday is projected to be good so I should get to go home as planned.
My counts are still fine and I still feel fine. So basically, my activity has been nothing but finding ways to occupy the daytime hours. And this is compounded by the fact that hospital life on the weekends is very quiet.
So I am about to watch the Dallas-Baltimore football game tonight. Hopefully the result is more to the Patriot’s favor than Thursday night’s game. Go Dallas!
Bob
December 19, 2008 7:45
2 down – 3 to go!!
It was an uneventful day – just the way that I want it! For the first time my wife did not come to the hospital but that was understandable with the bad weather that had been forecast and the snow that we already have on the ground. I just spoke to her on the phone and there is about 6” on the ground and it’s supposed to snow until midnight.
I have a new room mate - a man who was in ICU. News break! They are moving him again! They say that because of his state of health, he needs a private room. This just adds to my observation since I’ve been here. I happen to sit right by the door to the room and I watch patients walk by during the day and I observe their condition and I say to myself, “These people are sick – so why am I here?” I am still feeling fine – suffering no side effects from the chemo.
So after commenting on the midnight vitals visit Wednesday night, I got the nurse to agree to have them come in at 10:00. And sure enough at 10:00 someone came in to take my vitals. And sure enough…..someone came in at midnight to take my vitals as well. I guess that I have to be more specific!
Bob
It was an uneventful day – just the way that I want it! For the first time my wife did not come to the hospital but that was understandable with the bad weather that had been forecast and the snow that we already have on the ground. I just spoke to her on the phone and there is about 6” on the ground and it’s supposed to snow until midnight.
I have a new room mate - a man who was in ICU. News break! They are moving him again! They say that because of his state of health, he needs a private room. This just adds to my observation since I’ve been here. I happen to sit right by the door to the room and I watch patients walk by during the day and I observe their condition and I say to myself, “These people are sick – so why am I here?” I am still feeling fine – suffering no side effects from the chemo.
So after commenting on the midnight vitals visit Wednesday night, I got the nurse to agree to have them come in at 10:00. And sure enough at 10:00 someone came in to take my vitals. And sure enough…..someone came in at midnight to take my vitals as well. I guess that I have to be more specific!
Bob
December 18, 8:00 PM
Well, 1 down and 4 to go – but who’s keeping score!
As I said in yesterday’s entry, I share a room. This, I find, is not always the best of ideas. This morning his whole family gathered around his bed to have a 10:00 meeting with his doctor. The essence of the meeting was how best to send him home so that he could peaceably live out the last months of his life. To his credit, he maintains an upbeat attitude and, to their credit, his family was also bearing up very well. But, I have to admit, it was not something that I wished to be so intimately involved in.
This floor does not run on as rigid a schedule as my last floor. Upstairs they do vitals at 2, 6, & 10 skipping the 2 AM time. Down here the times are random and you have no idea when it will be done. So saying, the woke me up 3 times from a sound sleep at midnight, 5:15 AM, and 7:15 AM to take my vitals and to try to draw blood. I say try because the 7:15 wake up was to do precisely that when it had already been done at 5:15. I wish that they could get their act together.
This morning, one of the nurse assistants commented that she remembered me from my first room up in 6D pod. When I responded that it must have been my good looks that she recalled. She immediately, replied, “No, that’s not it!” I just have to think that she was lying to me!
Nothing eventful today. I am just marking time until I can go home on Monday. The nurse told me that they have already started drafting the discharge papers so I am hoping that the process goes a lot faster this time and that Monday afternoon is a reality – not Monday night.
With the weather prediction of a major snowstorm tomorrow – I am going to be hard pressed to find something edible in the food department because my wife will definitely not be driving to Boston in the storm. Today, I dined on delicacies from Au Bon Pain once again – what a delight! I’m going to have to get creative tomorrow or fall back on good old PB&J which is always a safe bet!
So far round 2 of chemo has gone as well as round 1 and I am thankful for your prayers that are helping to keep it so.
Bob
As I said in yesterday’s entry, I share a room. This, I find, is not always the best of ideas. This morning his whole family gathered around his bed to have a 10:00 meeting with his doctor. The essence of the meeting was how best to send him home so that he could peaceably live out the last months of his life. To his credit, he maintains an upbeat attitude and, to their credit, his family was also bearing up very well. But, I have to admit, it was not something that I wished to be so intimately involved in.
This floor does not run on as rigid a schedule as my last floor. Upstairs they do vitals at 2, 6, & 10 skipping the 2 AM time. Down here the times are random and you have no idea when it will be done. So saying, the woke me up 3 times from a sound sleep at midnight, 5:15 AM, and 7:15 AM to take my vitals and to try to draw blood. I say try because the 7:15 wake up was to do precisely that when it had already been done at 5:15. I wish that they could get their act together.
This morning, one of the nurse assistants commented that she remembered me from my first room up in 6D pod. When I responded that it must have been my good looks that she recalled. She immediately, replied, “No, that’s not it!” I just have to think that she was lying to me!
Nothing eventful today. I am just marking time until I can go home on Monday. The nurse told me that they have already started drafting the discharge papers so I am hoping that the process goes a lot faster this time and that Monday afternoon is a reality – not Monday night.
With the weather prediction of a major snowstorm tomorrow – I am going to be hard pressed to find something edible in the food department because my wife will definitely not be driving to Boston in the storm. Today, I dined on delicacies from Au Bon Pain once again – what a delight! I’m going to have to get creative tomorrow or fall back on good old PB&J which is always a safe bet!
So far round 2 of chemo has gone as well as round 1 and I am thankful for your prayers that are helping to keep it so.
Bob
December 17, 2008 7:40 PM
Well, it’s deja vu all over again – but not quite. I’m back in the hospital for chemo until Monday but I am on a different floor than the first time so other than 1 of the nurses, they are all new to me and me to them. My new room number is 5B 31. Also, I have to share the room with another gentleman who is hoping to go home tomorrow. Maybe that will happen and I’ll once again have a private room. I don’t need a private room because my counts won’t bottom out until 10 days from now.
It’s been a day of adventure starting with the power going off at 12:15 last night. Fortunately, it came on a half hour later. However, when we got up, it was snowing and there was an inch or 2 on the ground. Leaving just before 6:00 for an 8:30 appointment we were only about 15 minutes late! The traffic was horrible! The good news was that they took me right away – the bad news was that they did not begin the chemo at that point and we waited around until noontime before they actually started it. This means that the 5 days will expire sometime early Monday afternoon. And, with any luck, I should be able to go home later that afternoon.
Given the fact that it seems that every time we come down here, the weather seems to be miserable – my doctor suggested that it might be possible to go to a facility in Manchester to get my blood drawn and counts taken. This would be a Godsend - especially the way that the winter weather seems to be taking a turn for the worse. It appears that the watchword is now “patient safety” (I know, I know – that’s 2 words). It seems that a New Hampshire patient ran into a tree that had fallen across the road on Friday trying to get here for his appointment. Up until that point in time, getting work done in New Hampshire was deemed not to be an option.
So I dodged the cafeteria bullet again tonight as my wife, once again, bought me supper from the Au Bon Pain downstairs – delicious soup and a pastry.
So, for now, we are just going to ride out the 5 days and keep tabs on the bone marrow search as well.
I certainly still need everyone’s continued prayers and support as there is most definitely a long way to go before this problem is licked.
Bob
It’s been a day of adventure starting with the power going off at 12:15 last night. Fortunately, it came on a half hour later. However, when we got up, it was snowing and there was an inch or 2 on the ground. Leaving just before 6:00 for an 8:30 appointment we were only about 15 minutes late! The traffic was horrible! The good news was that they took me right away – the bad news was that they did not begin the chemo at that point and we waited around until noontime before they actually started it. This means that the 5 days will expire sometime early Monday afternoon. And, with any luck, I should be able to go home later that afternoon.
Given the fact that it seems that every time we come down here, the weather seems to be miserable – my doctor suggested that it might be possible to go to a facility in Manchester to get my blood drawn and counts taken. This would be a Godsend - especially the way that the winter weather seems to be taking a turn for the worse. It appears that the watchword is now “patient safety” (I know, I know – that’s 2 words). It seems that a New Hampshire patient ran into a tree that had fallen across the road on Friday trying to get here for his appointment. Up until that point in time, getting work done in New Hampshire was deemed not to be an option.
So I dodged the cafeteria bullet again tonight as my wife, once again, bought me supper from the Au Bon Pain downstairs – delicious soup and a pastry.
So, for now, we are just going to ride out the 5 days and keep tabs on the bone marrow search as well.
I certainly still need everyone’s continued prayers and support as there is most definitely a long way to go before this problem is licked.
Bob
December 16, 2008
Well, we just returned from the hospital after speaking with the bone marrow transplant specialist. As with all things that are new to you - you learn quite a lot and the doctor is very patient and a very good teacher.
The bottom line is that with a continued regimen of chemo without a transplant there is about a 5% chance of making a full recovery - certainly not the best of odds. Likewise, should there be a relapse(obviously there is a 95% chance of that) - the cancer cells that come back would be very hardy because they would have survived all the chemo up to that point. It would then take even stronger doses of chemo to try to get rid of them. Given the fact that I am taking the 2nd strongest set of chemo drugs - there is only 1 option left - if that does not work then I would be out of luck. A bone marrow transplant would not be feasible at that point because I would no longer be in remission.
Now for the transplant option. Statistically, there is about a 40% chance of success with the transplant. For me this is an increase from my first visit to the doctor who said that there was about a 30% survival rate for someone my age. However, these are just numbers and do not necessarily apply to me!
Now for the normal vs reduced transplant approaches. Knowing that I would never explain it properly, I have excerpted the following explanation for a reduced intensity bone marrow transplant. Once the bone marrow has been transplanted, the....
"Reduced intensity conditioning refers to a conditioning regimen that uses less chemotherapy and radiation than the standard myeloablative conditioning regimen. Myeloablation is the result of an intensive conditioning regimen in which the bone marrow cells are destroyed. The goal of using a reduced intensity conditioning regimen is to decrease the transplant-related complications, toxicity and mortality. However, since myeloablation may not be achieved with this approach, the risk of rejecting the transplant may be higher compared to a full-intensity (myeloablative) conditioning regimen."
According to the doctors a full regimen of chemo and radiation would most likely be too much for an older person to withstand. However, the amount of reduction is somewhat based upon a person's overall health. The idea is to increase the likelihood for the patient to survive the procedure even though the overall likelihood of enacting a cure may be somehat reduced. It's trying to avoid the old joke about the operation being a success but the patient died. As I read further on this, the reduced intensity is also supposed to apply to the pre-transplant treatment as well which could result in not having all the cancer cells removed. That is most certainly not my situation and further explains why I have to go in tomorrow for the 5 and 2 regimen which is intended to keep me in full remission.
A few other points of interest were also discussed. I found out that my sister was only a 50% match for the transplant having matched 3 of the 6 criteria that make up the HLA values that the doctors use to seek compatible donors.
The doctor did a quick search of the bone marrow bank while we were there and came up with approximately 90 donors from around the world that will have to be further checked in detail to winnow it down to the most compatible ones. So it seems that we are off to a good start. It will probably be a good 2 months before the transplant will actually take place given the holidays, the donor filtering process, contacting the possible donor(s), etc.
Lastly, the doctor stated that the reduced intensity transplant only involved a hospital stay of about 8 days. Boy was that good news! People were telling me that I would be in for weeks. It does mean frequent trips to the hospital to monitor my recuperation - but I'll gladly pay that price! Unfortunately, my wife will have to pay it, too(she's been doing the driving)!
That's enough for today. Tomorrow I should be starting round 2 of chemo with the expectation that I will be back home on Monday. So it looks like the next installment will be from the hospital.
All for now....
Bob
The bottom line is that with a continued regimen of chemo without a transplant there is about a 5% chance of making a full recovery - certainly not the best of odds. Likewise, should there be a relapse(obviously there is a 95% chance of that) - the cancer cells that come back would be very hardy because they would have survived all the chemo up to that point. It would then take even stronger doses of chemo to try to get rid of them. Given the fact that I am taking the 2nd strongest set of chemo drugs - there is only 1 option left - if that does not work then I would be out of luck. A bone marrow transplant would not be feasible at that point because I would no longer be in remission.
Now for the transplant option. Statistically, there is about a 40% chance of success with the transplant. For me this is an increase from my first visit to the doctor who said that there was about a 30% survival rate for someone my age. However, these are just numbers and do not necessarily apply to me!
Now for the normal vs reduced transplant approaches. Knowing that I would never explain it properly, I have excerpted the following explanation for a reduced intensity bone marrow transplant. Once the bone marrow has been transplanted, the....
"Reduced intensity conditioning refers to a conditioning regimen that uses less chemotherapy and radiation than the standard myeloablative conditioning regimen. Myeloablation is the result of an intensive conditioning regimen in which the bone marrow cells are destroyed. The goal of using a reduced intensity conditioning regimen is to decrease the transplant-related complications, toxicity and mortality. However, since myeloablation may not be achieved with this approach, the risk of rejecting the transplant may be higher compared to a full-intensity (myeloablative) conditioning regimen."
According to the doctors a full regimen of chemo and radiation would most likely be too much for an older person to withstand. However, the amount of reduction is somewhat based upon a person's overall health. The idea is to increase the likelihood for the patient to survive the procedure even though the overall likelihood of enacting a cure may be somehat reduced. It's trying to avoid the old joke about the operation being a success but the patient died. As I read further on this, the reduced intensity is also supposed to apply to the pre-transplant treatment as well which could result in not having all the cancer cells removed. That is most certainly not my situation and further explains why I have to go in tomorrow for the 5 and 2 regimen which is intended to keep me in full remission.
A few other points of interest were also discussed. I found out that my sister was only a 50% match for the transplant having matched 3 of the 6 criteria that make up the HLA values that the doctors use to seek compatible donors.
The doctor did a quick search of the bone marrow bank while we were there and came up with approximately 90 donors from around the world that will have to be further checked in detail to winnow it down to the most compatible ones. So it seems that we are off to a good start. It will probably be a good 2 months before the transplant will actually take place given the holidays, the donor filtering process, contacting the possible donor(s), etc.
Lastly, the doctor stated that the reduced intensity transplant only involved a hospital stay of about 8 days. Boy was that good news! People were telling me that I would be in for weeks. It does mean frequent trips to the hospital to monitor my recuperation - but I'll gladly pay that price! Unfortunately, my wife will have to pay it, too(she's been doing the driving)!
That's enough for today. Tomorrow I should be starting round 2 of chemo with the expectation that I will be back home on Monday. So it looks like the next installment will be from the hospital.
All for now....
Bob
December 15, 2008 12:05 PM
Well, it's been an interesting few days. The ice storm wreaked havoc here at home and we were without electricity from 1 AM on Friday until 11 PM Friday night. However, when it came on at 11, it only stayed until on until about 5 AM and went off until 9 AM when it came on for good. We were without cable until 3 PM on Sunday so we had no phone, no TV, and no internet access until then.
The biggest casualty of the weekend was the bone marrow drive at Hampshire Hills scheduled for Saturday. Because of the storm damage - downed trees, downed wires, bloced roads, no electricity to hundreds of thousands of people - it had to be postponed until Saturday, January 17, 2009. Wow! What happened to 2008?
The major problem with the power going out early Friday morning was that we had to be at the hospital at 7 AM. So after the power went out, we slept fitfully until 4:45 when we got up and made ready for the ride to Boston while the storm was still going on. The trip was not the easiest of rides as it was pouring rain at times and trees were down close to the highway - some even blocking a lane here and there. But, fortunately, traffic was not too heavy at that hour and we arrived in plenty of time. Of course, when we finally saw the doctor she said that we really shouldn't have jeopardized ourselves by making the trip. Again, she doesn't know us too well - unless there was a blizzard, we were going to be there!
Now for the news of the visit. Great news! Monday's bone marrow biopsy results showed NO evidence of the leukemia and my blood counts further confirmed that finding. However, the big concern is to keep me in that state. So, the doctor said that when I came in on Tuesday to talk with the bone marrow specialist, I would be admitted once again for 5 days to undergo the 2 and 5 chemo regimen. This is a reduced version of the 3 and 7 that I initially had. Since I am already cancer free, there is no reason to keep me in the hospital beyond the 5 days to see what the results of the chemo would be. This means that when I do get home all my counts will be very low and my resistance to infection will be the same. So I will not be able to venture out for a couple of weeks. Thus, Christmas day will be spent here at home. I'm not complaining, mind you, because it is certainly far better that spending it in the hospital. I will then be required to go to the hospital twice a week after that to have my blood counts checked. As to the duration of my time at home, and what's next, we'll have to defer to what the doctor says on Tuesday. Again, a pain in the neck, because you cannot plan anything!
It was also explained to me, because of the risks that go along with it, that I would be having a reduced level of bone marrow transplant because of my age. Is this another example of a senior citizen discount?
Since Friday, it has been confirmed that I will actually be admitted on Wednesday which means that I will most likely be discharged on Monday. Still in time to be home for Christmas.
A little off subject here. But on Friday, without any power, we ate out for lunch and dinner and then tried to find an open movie theater to while away the evening. So we ended up seeing "The Day the Earth Stood Still" since it was the next movie to play. What a dog!!!! But it did accomplish what we wanted.
So we are fortunate in many ways. Medically, things are going as well as they can be. And, we are completely up and running here at home. So many people are still without power and have been told that it will still be days before it is restored.
Once again - life is good.
Bob
The biggest casualty of the weekend was the bone marrow drive at Hampshire Hills scheduled for Saturday. Because of the storm damage - downed trees, downed wires, bloced roads, no electricity to hundreds of thousands of people - it had to be postponed until Saturday, January 17, 2009. Wow! What happened to 2008?
The major problem with the power going out early Friday morning was that we had to be at the hospital at 7 AM. So after the power went out, we slept fitfully until 4:45 when we got up and made ready for the ride to Boston while the storm was still going on. The trip was not the easiest of rides as it was pouring rain at times and trees were down close to the highway - some even blocking a lane here and there. But, fortunately, traffic was not too heavy at that hour and we arrived in plenty of time. Of course, when we finally saw the doctor she said that we really shouldn't have jeopardized ourselves by making the trip. Again, she doesn't know us too well - unless there was a blizzard, we were going to be there!
Now for the news of the visit. Great news! Monday's bone marrow biopsy results showed NO evidence of the leukemia and my blood counts further confirmed that finding. However, the big concern is to keep me in that state. So, the doctor said that when I came in on Tuesday to talk with the bone marrow specialist, I would be admitted once again for 5 days to undergo the 2 and 5 chemo regimen. This is a reduced version of the 3 and 7 that I initially had. Since I am already cancer free, there is no reason to keep me in the hospital beyond the 5 days to see what the results of the chemo would be. This means that when I do get home all my counts will be very low and my resistance to infection will be the same. So I will not be able to venture out for a couple of weeks. Thus, Christmas day will be spent here at home. I'm not complaining, mind you, because it is certainly far better that spending it in the hospital. I will then be required to go to the hospital twice a week after that to have my blood counts checked. As to the duration of my time at home, and what's next, we'll have to defer to what the doctor says on Tuesday. Again, a pain in the neck, because you cannot plan anything!
It was also explained to me, because of the risks that go along with it, that I would be having a reduced level of bone marrow transplant because of my age. Is this another example of a senior citizen discount?
Since Friday, it has been confirmed that I will actually be admitted on Wednesday which means that I will most likely be discharged on Monday. Still in time to be home for Christmas.
A little off subject here. But on Friday, without any power, we ate out for lunch and dinner and then tried to find an open movie theater to while away the evening. So we ended up seeing "The Day the Earth Stood Still" since it was the next movie to play. What a dog!!!! But it did accomplish what we wanted.
So we are fortunate in many ways. Medically, things are going as well as they can be. And, we are completely up and running here at home. So many people are still without power and have been told that it will still be days before it is restored.
Once again - life is good.
Bob
December 11, 2008 8:45
I somewhat apologize for having no entry yesterday, but there really was nothing to comment about. I basically spent a quiet day at home - no visitors, no doctors appointments,....
Tomorrow morning, of course, is when the results of Monday's bone marrow biopsy will be revealed. The weather won't make the commute to Boston very easy; but we travel on main roads so I am not expecting any real problems. My wife and I were hoping that the new Dana Farber Center that opened recently in Londonderry, New Hampshire would ease the commute but my doctor said that it does not apply to my situation - so Boston forever remains our destination.
A quick observation....
there is no more hair appearing on my pillow in the morning so I guess that have dodged the bullet of completely losing my hair as I do have that layer of peach fuzz on top.
So, tomorrow, I will let you all know the results of the biopsy and, hopefully, what lies ahead in the near future. That is one of the most frustrating aspects of this entire process - I cannot plan for the future beyond, possibly, one week at a time. As of this moment, I don't even know if I will be home for Christmas and/or New Years. If there is an event that I would like to attend several months down the road, I have to pass it up as I have no idea what I'll be doing or where I'll be doing it. The doctors call all the shots and those shots are determined by test results.
Before I sign off for the day, I just wish to remind everyone once again of the bone marrow drive that is occurring on Saturday, December 13 from 10 AM to 2 PM at Hampshire Hills in Milford, NH. I do plan on being there at the beginning for some period of time. My daughter, Jennifer, has worked hard to pull this all together even to the extent of getting vendors to donate items for a raffle that is being held during the proceedings. I do know that there are some large furniture prizes and a host of other smaller items that will be given away. Please try to attend - someone's life may very well hinge on the fact that you came forward.
Bob
Tomorrow morning, of course, is when the results of Monday's bone marrow biopsy will be revealed. The weather won't make the commute to Boston very easy; but we travel on main roads so I am not expecting any real problems. My wife and I were hoping that the new Dana Farber Center that opened recently in Londonderry, New Hampshire would ease the commute but my doctor said that it does not apply to my situation - so Boston forever remains our destination.
A quick observation....
there is no more hair appearing on my pillow in the morning so I guess that have dodged the bullet of completely losing my hair as I do have that layer of peach fuzz on top.
So, tomorrow, I will let you all know the results of the biopsy and, hopefully, what lies ahead in the near future. That is one of the most frustrating aspects of this entire process - I cannot plan for the future beyond, possibly, one week at a time. As of this moment, I don't even know if I will be home for Christmas and/or New Years. If there is an event that I would like to attend several months down the road, I have to pass it up as I have no idea what I'll be doing or where I'll be doing it. The doctors call all the shots and those shots are determined by test results.
Before I sign off for the day, I just wish to remind everyone once again of the bone marrow drive that is occurring on Saturday, December 13 from 10 AM to 2 PM at Hampshire Hills in Milford, NH. I do plan on being there at the beginning for some period of time. My daughter, Jennifer, has worked hard to pull this all together even to the extent of getting vendors to donate items for a raffle that is being held during the proceedings. I do know that there are some large furniture prizes and a host of other smaller items that will be given away. Please try to attend - someone's life may very well hinge on the fact that you came forward.
Bob
Devember 9, 2008 8:15
Not a whale of a lot to say today. The spot where the bone marrow biopsy was taken is rather tender unlike the previous 2 that I had. Of course, this will ultimately go away but you have to be a little careful when you sit down and sleeping on your back at night is a bit of a problem.
An appointment was made today for me to see the bone marrow specialist doctor next Tuesday.
On a more personal note, I was more that shocked to hear that my boss got laid off today. He was a hard worker and well respected by everyone for his fairness and for his genuine concern for everyone who worked for him. Through the years, I have come to realize that bosses like him are a rare breed and are to be much appreciated. I know that this is such a blow to the department and it will certainly do nothing to improve employee morale. He will be in my thoughts and prayers as he seeks new employment. This is truly a shame for he is such a good man! He will be sorely missed!
Bob
An appointment was made today for me to see the bone marrow specialist doctor next Tuesday.
On a more personal note, I was more that shocked to hear that my boss got laid off today. He was a hard worker and well respected by everyone for his fairness and for his genuine concern for everyone who worked for him. Through the years, I have come to realize that bosses like him are a rare breed and are to be much appreciated. I know that this is such a blow to the department and it will certainly do nothing to improve employee morale. He will be in my thoughts and prayers as he seeks new employment. This is truly a shame for he is such a good man! He will be sorely missed!
Bob
December 8, 2008 8:30 PM
Good news! My blood cell numbers are excellent! When you look at the counts as they currently stand, there is no indication of the disease. That's why it is necessary to look directly at the bone marrow to determine what is happening direcctly at the source.
That brings me to the fun part of the day! The bone marrow biopsy taken this morning. Since it was performed on an outpatient basis, I was not allowed to have any kind of general anesthesia - only a local such as you would get at the dentist. The first 2 times that it was done, I was an in patient so I got a little something to kind of put me in la-la land. Not so today! Needless to say of the 3 biopsies that I have had, this was the least "pleasant". However, I survived and I received word that there would be a very limited number of these in the future. Thank God for small favors!
The doctor also said that my resistance to infection is improving all the time but that I should still avoid large crowds and children. So, I can come and go as I please within reason - but who wants to go anywhere in this cold weather! The older I get - I find that I dislike this weather more and more! But, since the weather is not going to change - I think that I'm going to have to find some way to get younger! I have to admit that this peach fuzz that I have left for hair on the top of my head does not do a good job of keeping my head warm. I now have new admiration for all of you who buzz cut it or shave it altogether! This whole experience is changing my whole outlook on a lot of things!
Had some company bring over Kentucky Fried Chicken for dinner tonight and we had a great time. I always enjoy visitors!
So now we await the results of today's experience which will be known to us on Friday and also find out at that time what the next step is to be.
Bob
That brings me to the fun part of the day! The bone marrow biopsy taken this morning. Since it was performed on an outpatient basis, I was not allowed to have any kind of general anesthesia - only a local such as you would get at the dentist. The first 2 times that it was done, I was an in patient so I got a little something to kind of put me in la-la land. Not so today! Needless to say of the 3 biopsies that I have had, this was the least "pleasant". However, I survived and I received word that there would be a very limited number of these in the future. Thank God for small favors!
The doctor also said that my resistance to infection is improving all the time but that I should still avoid large crowds and children. So, I can come and go as I please within reason - but who wants to go anywhere in this cold weather! The older I get - I find that I dislike this weather more and more! But, since the weather is not going to change - I think that I'm going to have to find some way to get younger! I have to admit that this peach fuzz that I have left for hair on the top of my head does not do a good job of keeping my head warm. I now have new admiration for all of you who buzz cut it or shave it altogether! This whole experience is changing my whole outlook on a lot of things!
Had some company bring over Kentucky Fried Chicken for dinner tonight and we had a great time. I always enjoy visitors!
So now we await the results of today's experience which will be known to us on Friday and also find out at that time what the next step is to be.
Bob
December 7, 2008 8:45 PM
Real quick today as there really is nothing of substance to write about.
Just had a few visitors and had a delicious lobster/steamer dinner. Makes me long for that hospital food all the more!
Of course, tomorrow morning is the bone marrow biopsy and there will be an update on my blood cell counts as well. I'll check in with that after I return from the hospital.
Still feeling great!!
Bob
Just had a few visitors and had a delicious lobster/steamer dinner. Makes me long for that hospital food all the more!
Of course, tomorrow morning is the bone marrow biopsy and there will be an update on my blood cell counts as well. I'll check in with that after I return from the hospital.
Still feeling great!!
Bob
December 6, 2008 8:05
Just a quick entry for the day.
The newspaper interview took place this afternoon from 3 to 4. I thought that it went very well so we'll see how it all translates into the final article. He took some pictures as well. From my point of view, none of them were very flattering - but, then again, he did not have much to work with.
Time for another hair update. The hair on the top of my head continues to slowly fall out but even though I have what appears to be bald spots here and there; there is still some fine hair covering my scalp.
Since I shaved last Saturday, I have not needed to shave since. My facial hair is very slowly growing back. When I'll have to shave again - no idea.
Bob
The newspaper interview took place this afternoon from 3 to 4. I thought that it went very well so we'll see how it all translates into the final article. He took some pictures as well. From my point of view, none of them were very flattering - but, then again, he did not have much to work with.
Time for another hair update. The hair on the top of my head continues to slowly fall out but even though I have what appears to be bald spots here and there; there is still some fine hair covering my scalp.
Since I shaved last Saturday, I have not needed to shave since. My facial hair is very slowly growing back. When I'll have to shave again - no idea.
Bob
December 5, 2008 10:00 PM
Certainly not much to go into today.
Probably the most exciting thing was that I was mentioned in an article in one of our local newspapers in reference to the bone marrow drive that is to take place next Saturday(12/13). The drive is very important. My inclusion in the article only served as an introduction to that key message and that is the way that it should be. I'll gladly be the messenger to get the word out about how important it is to step up and offer to help save someone's life.
Of course, tomorrow is the newspaper interview and I will again reinforce the message.
As usual, things are going very well. I feel fine and I will continue to be on the mend as I go forward into next week with the bone marrow biopsy and the results on the schedule.
Once again, I cannot emphasize enough how much I appreciate your thoughts and prayers. Even after having spent a month combatting this disease, your cards and gifts still continue to arrive and continue to inspire me. Thank you so much!!!!!
My wife has been asked by several friends if I am starting to get cabin fever having basically stayed in the house for the past 6 days. Believe me, after spending a month in the hospital, home is like heaven on earth! I can't say enough about the food(my wife is an excellent cook)! People do stop by to visit. I am not teathered to an IV pole. I do not have to urinate into a container. I am not required to be awake at 5 AM to get blood drawn and have my vitals taken. I can actually brush my teeth. I do not have to wear the designer clothes that the hospital provides. The TV selections are much better and they are in HD.
Life is good!!!!!
Bob
Probably the most exciting thing was that I was mentioned in an article in one of our local newspapers in reference to the bone marrow drive that is to take place next Saturday(12/13). The drive is very important. My inclusion in the article only served as an introduction to that key message and that is the way that it should be. I'll gladly be the messenger to get the word out about how important it is to step up and offer to help save someone's life.
Of course, tomorrow is the newspaper interview and I will again reinforce the message.
As usual, things are going very well. I feel fine and I will continue to be on the mend as I go forward into next week with the bone marrow biopsy and the results on the schedule.
Once again, I cannot emphasize enough how much I appreciate your thoughts and prayers. Even after having spent a month combatting this disease, your cards and gifts still continue to arrive and continue to inspire me. Thank you so much!!!!!
My wife has been asked by several friends if I am starting to get cabin fever having basically stayed in the house for the past 6 days. Believe me, after spending a month in the hospital, home is like heaven on earth! I can't say enough about the food(my wife is an excellent cook)! People do stop by to visit. I am not teathered to an IV pole. I do not have to urinate into a container. I am not required to be awake at 5 AM to get blood drawn and have my vitals taken. I can actually brush my teeth. I do not have to wear the designer clothes that the hospital provides. The TV selections are much better and they are in HD.
Life is good!!!!!
Bob
December 4, 2008 8:15 PM
Last night, in my zeal to fully explain and get out the news from my doctors visit, I neglected to mention one other thing that happened at my mother-in-law's birthday dinner. My son-in-law who is a volunteer fireman for the Milford, NH fire department presented me and my wife with a generous gift of gasoline gift cards made possible from contributions made by the members of the fire department. Needless to say, they will certainly come in handy with the many upcoming trips that we have to take to Boston.
Also, needless to say, we were both taken aback by the thoughtfulness expressed by a group of individuals who do not even know who I am! Words cannot adequately express how grateful and appreciative we are for the gift. We hear so much in the news of the bad things that befall us in life - the good things that people do just seem to get little or no play! For sure, firemen certainly fill a vital role in our communities. And here is another way that they show it and I know that it will never be mentioned!
So.... if they won't mention it, I will.
To the Milford, NH fire department - thank you so much for your kindness and thoughtfulness!
Bob
Also, needless to say, we were both taken aback by the thoughtfulness expressed by a group of individuals who do not even know who I am! Words cannot adequately express how grateful and appreciative we are for the gift. We hear so much in the news of the bad things that befall us in life - the good things that people do just seem to get little or no play! For sure, firemen certainly fill a vital role in our communities. And here is another way that they show it and I know that it will never be mentioned!
So.... if they won't mention it, I will.
To the Milford, NH fire department - thank you so much for your kindness and thoughtfulness!
Bob
December 3, 2008 10:30 PM
Sorry for the late post today. But, I was out to dinner with the family celebrating my mother-in-law's 91st birthday. She had not been told that I was going to be there - so my appearance was a most pleasant surprise. At her age, we do get concerned somewhat that some surprises may be a little too much to take - but she was fine. Tonight's outing was (and will be) the highlight of my stay at home because I am limiting my exposure to crowds and people as the doctors have ordered.
Let's cut to the chase at this point. What transpired at the doctor's office this morning! The first thing that occurred is they drew blood and got the results to the doctor. These results definitely gated the course of the rest of the visit. My counts are rising as they should be and everything is on target.
Before I continue though, it's time for a quick lesson on how the body makes blood cells. Starting in the bone marrow from stem cells, the body starts differentiating the stem cells into several different paths. These individual paths end up being the various kinds of blood cells that we all have in our bodies. Each path has a number of steps that it goes through before the cells reach their final stage - at which point they are released into the body. Unfortunately for me, at one stage on one of the paths, all further progress stops! The stage in which it halts is the blast stage. Normally, because everyones cell development goes through this stage, the percentage of blasts in the body is about 5%. Of course, before the chemo, my blast count was higher than that - I have no idea what it was. After the chemo, the blast percent was 0.
OK, where am I going with all of this. Today, my blast percentage was around 2%. The doctor has no idea whether I will continue to generate the blast cells and stop around 5% or whether I will blow right past the number because the cancer is still present. She wanted a little more time to see what my body was doing. Therefore, it was decided to postpone the bone marrow biopsy, once again, until Monday and to schedule a follow up appointment for the following Friday to discuss the results. Bottom line - so far, so good!
Also, we mentioned to the doctor that my discharge papers from the hospital said that I could go back to work after staying home for 2 weeks! Her immediate response was, No! No! No! No! No! No! No! No! I have probably done an injustice to the number of no's that she said as she seemed to go on for quite a while. Perhaps if the timeframe was 3 weeks she might have looked at the matter in a more reasonable light.
We also asked if it would be OK for me to go to the restaurant tonight. She said that there would be no problem as long as I did not order sushi or steak tartare. It was obvious that she did not know me very well!
Lastly, on Saturday, I am going to be interviewed by one of the local newspapers. To be honest, I do not think that there is much of a story with me. There are many others who have walked in and are walking in my footsteps who, I am sure, have a much better story to tell. However, if I can get the word out to the community about the upcoming bone marrow drive in Milford on the 13th and how important it is to be able to give each leukemia patient a chance for survival then the interview will be well worth it. Just think about it - the finest doctors in the world employing the latest advances in modern medicine cannot cure those leukemia patients needing a bone marrow transplant if no match is found in the bone marrow bank! How frustrating that must be!
Bob
Let's cut to the chase at this point. What transpired at the doctor's office this morning! The first thing that occurred is they drew blood and got the results to the doctor. These results definitely gated the course of the rest of the visit. My counts are rising as they should be and everything is on target.
Before I continue though, it's time for a quick lesson on how the body makes blood cells. Starting in the bone marrow from stem cells, the body starts differentiating the stem cells into several different paths. These individual paths end up being the various kinds of blood cells that we all have in our bodies. Each path has a number of steps that it goes through before the cells reach their final stage - at which point they are released into the body. Unfortunately for me, at one stage on one of the paths, all further progress stops! The stage in which it halts is the blast stage. Normally, because everyones cell development goes through this stage, the percentage of blasts in the body is about 5%. Of course, before the chemo, my blast count was higher than that - I have no idea what it was. After the chemo, the blast percent was 0.
OK, where am I going with all of this. Today, my blast percentage was around 2%. The doctor has no idea whether I will continue to generate the blast cells and stop around 5% or whether I will blow right past the number because the cancer is still present. She wanted a little more time to see what my body was doing. Therefore, it was decided to postpone the bone marrow biopsy, once again, until Monday and to schedule a follow up appointment for the following Friday to discuss the results. Bottom line - so far, so good!
Also, we mentioned to the doctor that my discharge papers from the hospital said that I could go back to work after staying home for 2 weeks! Her immediate response was, No! No! No! No! No! No! No! No! I have probably done an injustice to the number of no's that she said as she seemed to go on for quite a while. Perhaps if the timeframe was 3 weeks she might have looked at the matter in a more reasonable light.
We also asked if it would be OK for me to go to the restaurant tonight. She said that there would be no problem as long as I did not order sushi or steak tartare. It was obvious that she did not know me very well!
Lastly, on Saturday, I am going to be interviewed by one of the local newspapers. To be honest, I do not think that there is much of a story with me. There are many others who have walked in and are walking in my footsteps who, I am sure, have a much better story to tell. However, if I can get the word out to the community about the upcoming bone marrow drive in Milford on the 13th and how important it is to be able to give each leukemia patient a chance for survival then the interview will be well worth it. Just think about it - the finest doctors in the world employing the latest advances in modern medicine cannot cure those leukemia patients needing a bone marrow transplant if no match is found in the bone marrow bank! How frustrating that must be!
Bob
December 2, 2008 6:50 PM
A very quiet day today. Several friends came to visit with some of them bringing lunch. One of them even called me a fraud because I looked so good! However, they did see me in the hospital, which lends some credence to my situation.
Of course, the big deal is the doctors visit tomorrow. Gotta get up at 5 AM to beat the traffic into Boston. Ugh - I am so not a morning person!!!!!
There is one thing that I have forgotten to mention since I got home is that when I first got on the bathroom scale - I found that I had lost about 20 pounds! So, once again, I am approaching that Adonis look that I had when I first got married. I must confess, however, I don't know whether Adonis had hair or not!
Much more info tomorrow after the doctors visit.
Bob
Of course, the big deal is the doctors visit tomorrow. Gotta get up at 5 AM to beat the traffic into Boston. Ugh - I am so not a morning person!!!!!
There is one thing that I have forgotten to mention since I got home is that when I first got on the bathroom scale - I found that I had lost about 20 pounds! So, once again, I am approaching that Adonis look that I had when I first got married. I must confess, however, I don't know whether Adonis had hair or not!
Much more info tomorrow after the doctors visit.
Bob
December 1, 2008 5:20 PM
Wow!! It's December already! Hopefully, I get to enjoy it a little bit more than the month of November.
Finally connected with the doctor's office today. I go in for an 8:00 appointment on Wednesday at which time they will check my blood counts and do that bone marrow biopsy that they have threatened me with for the last week or so. I assume that the biopsy results will be the major determining factor as to how we proceed from here. Obviously, I'll let you all know what transpires at that time.
As for today, my wife had scheduled people to come in and steam clean all the rugs to make them as disease free as possible. This was originally scheduled with the thought that I would be coming home a little later this week. But, no matter what, with the future prospect of a bone marrow transplant the place should be as disease free as possible. So even though I jumped the gun this time, it's still an important part my overall recovery program.
Now that I am home and they are not pumping me up with fluids - the evening bathroom calls are far less frequent and I can finally get a good night's sleep. ZZZZZZZZZZZZ!!!!
Also looking forward to having a few friends stop in during the week as well.
Not much to say as I don't have daily contact with the doctors anymore. Thank God! But, as we all know, this journey still has a long way to go and I continue to need each of you at my side each step of the way.
Bob
Finally connected with the doctor's office today. I go in for an 8:00 appointment on Wednesday at which time they will check my blood counts and do that bone marrow biopsy that they have threatened me with for the last week or so. I assume that the biopsy results will be the major determining factor as to how we proceed from here. Obviously, I'll let you all know what transpires at that time.
As for today, my wife had scheduled people to come in and steam clean all the rugs to make them as disease free as possible. This was originally scheduled with the thought that I would be coming home a little later this week. But, no matter what, with the future prospect of a bone marrow transplant the place should be as disease free as possible. So even though I jumped the gun this time, it's still an important part my overall recovery program.
Now that I am home and they are not pumping me up with fluids - the evening bathroom calls are far less frequent and I can finally get a good night's sleep. ZZZZZZZZZZZZ!!!!
Also looking forward to having a few friends stop in during the week as well.
Not much to say as I don't have daily contact with the doctors anymore. Thank God! But, as we all know, this journey still has a long way to go and I continue to need each of you at my side each step of the way.
Bob
November 30, 2008 6:00 PM
Just a couple of things for the day.
I found when I got home that my legs were a little rubbery so I will definitely need to walk around and go up and down stairs to get them back to where they ought to be.
I guess that my hair has stopped growing all together because after shaving yesterday, I find that my face is still baby butt smooth tonight. So I guess that I won't need to shave for a while - so there is some benefit to all this chemo!!! Even my wife says I'm baby butt smooth!!!!!
Lastly, we had a visting critical care nurse stop by this afternoon to bring us supplies and to be informed as to when I needed to have the dressing changed on my catheter. The catheter still remains because it will still be needed when I go back to the hospital. But, the interesting part of the visit was that she said that she had been doing this for 20 years and had never seen anyone in the great shape that I am in. Of course, I was holding a glass of wine in my hand when she arrived so that might have further added to the image.
Tomorrow, I call the doctor to see what's next. I'll fill you in when I get the details.
Now gotta go back to the Patriots game!
Bob
I found when I got home that my legs were a little rubbery so I will definitely need to walk around and go up and down stairs to get them back to where they ought to be.
I guess that my hair has stopped growing all together because after shaving yesterday, I find that my face is still baby butt smooth tonight. So I guess that I won't need to shave for a while - so there is some benefit to all this chemo!!! Even my wife says I'm baby butt smooth!!!!!
Lastly, we had a visting critical care nurse stop by this afternoon to bring us supplies and to be informed as to when I needed to have the dressing changed on my catheter. The catheter still remains because it will still be needed when I go back to the hospital. But, the interesting part of the visit was that she said that she had been doing this for 20 years and had never seen anyone in the great shape that I am in. Of course, I was holding a glass of wine in my hand when she arrived so that might have further added to the image.
Tomorrow, I call the doctor to see what's next. I'll fill you in when I get the details.
Now gotta go back to the Patriots game!
Bob
November 29, 2008 8:05 PM
HOME!!!!!!!!!!!!!!!!!!!!!
After 25 days (the usual stay is 28+ days), I am finally home! Of course, I spread the good news earlier that I was going home. Well, it took over 5 hours to cross all the t’s and dot all the i’s before I could actually leave the hospital. I am to treat my stay at home as an extension of my hospital stay – no contact with crowds; no contact with children; if I get any infection, or feel a cold coming on, I am to contact a doctor immediately and go to a hospital to get antibiotics as my resistance to disease is still not quite up to normal. I can, however, eat and drink whatever I want so I had 1 glass of wine with my dinner. It capped off a fantastic day.
How long I stay at home, I do not know. I am to call the doctor on Monday to find out the next step in the process. I guess that the doctors decided not to do the next marrow biopsy – I didn’t ask. When I heard that I could go home, I did not want anything to jeopardize that decree.
My mother, sister, and brother-in-law came by this afternoon not knowing that I was going to be leaving. But it worked out fine since it took so long to finalize the discharge papers and we had a great visit.
So it will be a little R&R tomorrow and until I find out what the next step in the process will be.
Please continue to keep me in your thoughts and prayers – you are all doing such a wonderful job!!!!!!!
Bob
After 25 days (the usual stay is 28+ days), I am finally home! Of course, I spread the good news earlier that I was going home. Well, it took over 5 hours to cross all the t’s and dot all the i’s before I could actually leave the hospital. I am to treat my stay at home as an extension of my hospital stay – no contact with crowds; no contact with children; if I get any infection, or feel a cold coming on, I am to contact a doctor immediately and go to a hospital to get antibiotics as my resistance to disease is still not quite up to normal. I can, however, eat and drink whatever I want so I had 1 glass of wine with my dinner. It capped off a fantastic day.
How long I stay at home, I do not know. I am to call the doctor on Monday to find out the next step in the process. I guess that the doctors decided not to do the next marrow biopsy – I didn’t ask. When I heard that I could go home, I did not want anything to jeopardize that decree.
My mother, sister, and brother-in-law came by this afternoon not knowing that I was going to be leaving. But it worked out fine since it took so long to finalize the discharge papers and we had a great visit.
So it will be a little R&R tomorrow and until I find out what the next step in the process will be.
Please continue to keep me in your thoughts and prayers – you are all doing such a wonderful job!!!!!!!
Bob
November 29, 2008 12:20 PM
It’s happened!!!!!!
The doctor came in a few minutes ago and informed me that my counts were high enough and continuing to rapidly climb so that there was no reason that I could not go HOME TODAY!!!!!!!
Fortunately Nancy brought my clothes back from home this morning otherwise I would leave here in my johnny, those lovely pants, my bathrobe, and those lovely sox that they provide you! That’s a sight that people do not deserve to see!
I also was given the go ahead to shave as well. And, boy does that feel good – the scruffy look doesn’t do it for me. As for the hair on the top of my head, my wife likens it to molting as I have a few bald patches scattered around here and there.
Needless to say, we are both very excited!!! No more hospital food, my own bed, and no more urinating into a container – life is good!!!!
More news to follow.
Bob
The doctor came in a few minutes ago and informed me that my counts were high enough and continuing to rapidly climb so that there was no reason that I could not go HOME TODAY!!!!!!!
Fortunately Nancy brought my clothes back from home this morning otherwise I would leave here in my johnny, those lovely pants, my bathrobe, and those lovely sox that they provide you! That’s a sight that people do not deserve to see!
I also was given the go ahead to shave as well. And, boy does that feel good – the scruffy look doesn’t do it for me. As for the hair on the top of my head, my wife likens it to molting as I have a few bald patches scattered around here and there.
Needless to say, we are both very excited!!! No more hospital food, my own bed, and no more urinating into a container – life is good!!!!
More news to follow.
Bob
November 28, 2008 7:45 PM
It was a very pleasant day for me as friends and my son stopped by. The visits, as always, are much appreciated to help while away the time but, more importantly, to have the opportunity to reconnect with people and share what’s currently going on in our lives – though I think that most people have a pretty good idea what’s going on in my life!
The good news is that my counts are really starting to rise now and the prospect of going home soon seems to be just around the corner. I think, before I go home however, that they will do 1 more bone marrow biopsy just before I leave. This is to get an updated status as to where I stand. The results do not gate going home – in fact, the results won’t even be back before I leave here. However, the results are very important to the doctors as it helps them to best determine the next course of action.
When I do go home, I fully intend to keep this blog going to report to you all what is going on. I do not intend to make the entries of a “Dear Diary” nature telling you what I ate for breakfast, what TV shows I watched, who I talked to on the phone, etc. As you all know, this is a long process with more visits to the hospital on the horizon, more chemo, more testing, chances of relapse, etc. and, I am sure, there will be some ups and downs as I make my way along the road to recovery. As you can tell, I am being rather positive about the outcome, here. But, it’s the only way to be! And why not! Because of all of you – your thoughts and prayers - I have been given a great jump start that I see making the next steps go easier.
Bob
The good news is that my counts are really starting to rise now and the prospect of going home soon seems to be just around the corner. I think, before I go home however, that they will do 1 more bone marrow biopsy just before I leave. This is to get an updated status as to where I stand. The results do not gate going home – in fact, the results won’t even be back before I leave here. However, the results are very important to the doctors as it helps them to best determine the next course of action.
When I do go home, I fully intend to keep this blog going to report to you all what is going on. I do not intend to make the entries of a “Dear Diary” nature telling you what I ate for breakfast, what TV shows I watched, who I talked to on the phone, etc. As you all know, this is a long process with more visits to the hospital on the horizon, more chemo, more testing, chances of relapse, etc. and, I am sure, there will be some ups and downs as I make my way along the road to recovery. As you can tell, I am being rather positive about the outcome, here. But, it’s the only way to be! And why not! Because of all of you – your thoughts and prayers - I have been given a great jump start that I see making the next steps go easier.
Bob
November 27, 2008 8:05 PM
It was a good day for me. I hope that it was a great holiday for each of you as well. For me, breakfast was brought in by wife and one of my daughters and her husband. They left to go to my sister-in-laws for the day and then my wife returned along with my sister-in-law, one of my nieces, and my wife’s cousin bringing my Thanksgiving dinner – appetizers, dinner, and dessert. I’m stuffed!!!!!!
Last night around 9:00, the original intern assigned to me stopped by for a personal visit. As I mentioned before, they rotate off once a month. This man is a super doctor; his concern is always for the patient and this was only reinforced by his personal interest in following up on my status by stopping by last night. I only mention this because he brought up something that I had completely forgotten about. During the early stages of chemo when I was feeling no side effects and seemed to be unfazed by the whole process, I had made a definitive comment to him that I was going to defy the odds by not being overcome by any side effects and that things were going to go well for me. He reminded me of that comment and how prophetic it has turned out to be when he stated that, amazingly, I have remained unfazed by everything that has been thrown at me so far – most certainly defying all the odds! Of course, I am not undergoing this alone. A huge support system that is provided by each one of you certainly helps a lot – something of which he was not aware!
It looks like my counts are beginning to increase as they are supposed to while the hair on the top of my head continues to do what it is supposed to – slowly fall out! So going home for me may be just around the corner – yahoo!!!!!
As an aside, my wife’s cousin told me that his family in Greece is following my blog as well. So now I have gone international!
Well, its time to watch 1 more football game. In so saying, I’m being kind when I refer to the first 2 games as “games” – Detroit and Seattle were pathetic!
Bob
Last night around 9:00, the original intern assigned to me stopped by for a personal visit. As I mentioned before, they rotate off once a month. This man is a super doctor; his concern is always for the patient and this was only reinforced by his personal interest in following up on my status by stopping by last night. I only mention this because he brought up something that I had completely forgotten about. During the early stages of chemo when I was feeling no side effects and seemed to be unfazed by the whole process, I had made a definitive comment to him that I was going to defy the odds by not being overcome by any side effects and that things were going to go well for me. He reminded me of that comment and how prophetic it has turned out to be when he stated that, amazingly, I have remained unfazed by everything that has been thrown at me so far – most certainly defying all the odds! Of course, I am not undergoing this alone. A huge support system that is provided by each one of you certainly helps a lot – something of which he was not aware!
It looks like my counts are beginning to increase as they are supposed to while the hair on the top of my head continues to do what it is supposed to – slowly fall out! So going home for me may be just around the corner – yahoo!!!!!
As an aside, my wife’s cousin told me that his family in Greece is following my blog as well. So now I have gone international!
Well, its time to watch 1 more football game. In so saying, I’m being kind when I refer to the first 2 games as “games” – Detroit and Seattle were pathetic!
Bob
November 26, 2008 8:00 PM
The first thing that I want to do is to wish everyone a happy and wonderful Thanksgiving tomorrow. Obviously, I will not be home for the holiday; but the plan is to have some of the family stop by in the morning and bring me breakfast and then, later in the afternoon, return with my Thanksgiving dinner.
As for me, I consider myself blessed to have so many people who have taken the time to call, to send cards, to send e-mails, to visit, and to pray for me. You are all a blessing to me and I am deeply appreciative of the fact that you do take the time in your daily lives to think of me. Its times like these that most certainly bring home the message that the important things in life are people – not things! So when you give thanks tomorrow – give thanks for your family, neighbors, friends, co-workers, etc. While the turkey and trimmings nourish your body its all those people who nourish your life!
The doctors continue to be amazed at my condition. One doctor said this morning that I must have great internal resources to feel the way that I do. We all know, of course, that the external prayer resources that all of you contribute certainly plays a major part in this as well.
Likewise, in the afternoon, someone from the nutritionist department (oh, that is such a misnomer – the food is barely edible, so how can anyone get any nutrition from it!) stopped by and asked how I was doing. Did I have any pain? Did I have any nausea? Was I able to eat OK? When I answered that I had no problems, she stated that I was very lucky! Again, I know that luck is not playing any role in my recovery.
Everything is still going according to plan which, hopefully, translates into going home in another week or so. They say that it’s usually 28 days from when the chemo started which would make the day be next Wednesday.
The hair on the top of my head continues to fall out at night as my head rubs on the pillow. So far, there does not seem to be any other loss of hair.
Tonight’s dining “delight” was the meatball sub. It was edible, but it had little or no flavor. I think that the first thing that they teach them at institution cooking school is to avoid the spice rack at all costs! I can hardly wait to get home, to actually eat real food 3 times a day, and to enjoy a glass of wine with dinner!
Enjoy the holiday everyone!
Bob
As for me, I consider myself blessed to have so many people who have taken the time to call, to send cards, to send e-mails, to visit, and to pray for me. You are all a blessing to me and I am deeply appreciative of the fact that you do take the time in your daily lives to think of me. Its times like these that most certainly bring home the message that the important things in life are people – not things! So when you give thanks tomorrow – give thanks for your family, neighbors, friends, co-workers, etc. While the turkey and trimmings nourish your body its all those people who nourish your life!
The doctors continue to be amazed at my condition. One doctor said this morning that I must have great internal resources to feel the way that I do. We all know, of course, that the external prayer resources that all of you contribute certainly plays a major part in this as well.
Likewise, in the afternoon, someone from the nutritionist department (oh, that is such a misnomer – the food is barely edible, so how can anyone get any nutrition from it!) stopped by and asked how I was doing. Did I have any pain? Did I have any nausea? Was I able to eat OK? When I answered that I had no problems, she stated that I was very lucky! Again, I know that luck is not playing any role in my recovery.
Everything is still going according to plan which, hopefully, translates into going home in another week or so. They say that it’s usually 28 days from when the chemo started which would make the day be next Wednesday.
The hair on the top of my head continues to fall out at night as my head rubs on the pillow. So far, there does not seem to be any other loss of hair.
Tonight’s dining “delight” was the meatball sub. It was edible, but it had little or no flavor. I think that the first thing that they teach them at institution cooking school is to avoid the spice rack at all costs! I can hardly wait to get home, to actually eat real food 3 times a day, and to enjoy a glass of wine with dinner!
Enjoy the holiday everyone!
Bob
November 25, 2008 7:30 PM
The really good news of the day was that yesterday they sliced deeper into my bone marrow sample that they had from last week and redid the test and once again there was absolutely no sign of cancer cells. The bottom line from all this was that I now do not need to have a second bone marrow biopsy done – a relief for me as they are literally a pain in the ass!
So now I am literally in waiting mode until my counts go up so that I can go home. They continually feed me the antibiotics as I said before but that is it!
Well, it was another adventure in dining tonight! I branched out and ordered the “grilled sirloin burger”. On the menu it states that, “Brigham and Women’s hospital Food Service cooks raw meats well done”. I think that what this means is that they start cooking all the hamburgers at 5:00 in the morning and leave them on the grill until someone dares to ask for one. When the hamburger arrived, it was completely devoid of any juices, whatsoever, and hard as a hockey puck. Feeling courageous, I took one bite anyway and told my wife that I couldn’t eat it. I then offered her a bite to prove my point. With some reluctance, she took her bite and immediately commented, “That’s gross!” So each time that I order something new, I get the opportunity to scratch another item off the list of options. Pretty soon we’ll get down to PB&J as the only edible option outside of breakfast.
Unfortunately, during the bone marrow transplant portion of the program, you are not allowed to eat any food from the outside. When you juxtapose that with the fact that you cannot eat the inside food either – its going to make for some pretty rough times! However, I’ll cross that bridge when I come to it.
Bob
So now I am literally in waiting mode until my counts go up so that I can go home. They continually feed me the antibiotics as I said before but that is it!
Well, it was another adventure in dining tonight! I branched out and ordered the “grilled sirloin burger”. On the menu it states that, “Brigham and Women’s hospital Food Service cooks raw meats well done”. I think that what this means is that they start cooking all the hamburgers at 5:00 in the morning and leave them on the grill until someone dares to ask for one. When the hamburger arrived, it was completely devoid of any juices, whatsoever, and hard as a hockey puck. Feeling courageous, I took one bite anyway and told my wife that I couldn’t eat it. I then offered her a bite to prove my point. With some reluctance, she took her bite and immediately commented, “That’s gross!” So each time that I order something new, I get the opportunity to scratch another item off the list of options. Pretty soon we’ll get down to PB&J as the only edible option outside of breakfast.
Unfortunately, during the bone marrow transplant portion of the program, you are not allowed to eat any food from the outside. When you juxtapose that with the fact that you cannot eat the inside food either – its going to make for some pretty rough times! However, I’ll cross that bridge when I come to it.
Bob
November 24, 2008 7:40 PM
Well, it was another quiet day here in paradise. I had 2 sets of visitors – in the morning a friend was here and in the early afternoon my boss and his wife stopped in. Both visits were very pleasant and much appreciated as every day portends another full day of boredom and the visits do help so much to make the time go by.
The bone marrow biopsy did not occur today – so I can look forward to possibly having it done tomorrow – we’ll see as it has still not been formally scheduled.
Tomorrow marks 3 weeks in here – time flies fast when you are having fun! And, right on schedule, it looks like some of my hair is beginning to fall out. Here and there on the pillow you can see whiskers or hair from the top of my head – you can’t tell the difference because both are about the same length!
Still have no idea when I will go home but I’m hoping that it happens some time in the next 2 weeks. I must admit that I am beginning to get antsy at this point and home seems mighty appealing right now. For sure, I will spend Thanksgiving here. As one of the doctors said we are not looking at this year’s holidays – we are looking at next years!
Not much more to share. No little stories to tell and no new details as to what’s next as I sit here every day waiting for my counts to rise. Looking at the bright side of things, I hear that the weather has been very cold lately. And, of course, I do not have to go out in it! I do, however, fully expect to freeze my butt off when the time comes that I can go outside – especially since I have not been exposed to the weather and have not had the luxury of gradually getting used to the beginning of winter! Hopefully, discharge day will be a warm day.
Please continue to keep me in your thoughts and prayers as they seem to be working very, very well!
Bob
The bone marrow biopsy did not occur today – so I can look forward to possibly having it done tomorrow – we’ll see as it has still not been formally scheduled.
Tomorrow marks 3 weeks in here – time flies fast when you are having fun! And, right on schedule, it looks like some of my hair is beginning to fall out. Here and there on the pillow you can see whiskers or hair from the top of my head – you can’t tell the difference because both are about the same length!
Still have no idea when I will go home but I’m hoping that it happens some time in the next 2 weeks. I must admit that I am beginning to get antsy at this point and home seems mighty appealing right now. For sure, I will spend Thanksgiving here. As one of the doctors said we are not looking at this year’s holidays – we are looking at next years!
Not much more to share. No little stories to tell and no new details as to what’s next as I sit here every day waiting for my counts to rise. Looking at the bright side of things, I hear that the weather has been very cold lately. And, of course, I do not have to go out in it! I do, however, fully expect to freeze my butt off when the time comes that I can go outside – especially since I have not been exposed to the weather and have not had the luxury of gradually getting used to the beginning of winter! Hopefully, discharge day will be a warm day.
Please continue to keep me in your thoughts and prayers as they seem to be working very, very well!
Bob
November 23, 2008 8:25 PM
Well, any day that the Patriots garner a win is a good day isn’t it?
A day for visits by the kids – my daughter JoAnne and son Steve in the morning and my daughter Jennifer and her husband Mike in the afternoon. Jen and Mike brought me my lunch – a turkey dinner from Boston Market. Very tasty! My son brought me letters that my 8 year old granddaughter, Marisa had written for me and they are always a great pleasure to read and very uplifting! All in all, had a good time with both visits.
The doctor stopped by this morning and basically stated that they would like to do the next marrow biopsy tomorrow as there is no reason to wait. So we will see how that works out as time goes by because no one has formally stated that it is going to happen for sure on Monday.
So that was the day, very quiet and nice!
Bob
A day for visits by the kids – my daughter JoAnne and son Steve in the morning and my daughter Jennifer and her husband Mike in the afternoon. Jen and Mike brought me my lunch – a turkey dinner from Boston Market. Very tasty! My son brought me letters that my 8 year old granddaughter, Marisa had written for me and they are always a great pleasure to read and very uplifting! All in all, had a good time with both visits.
The doctor stopped by this morning and basically stated that they would like to do the next marrow biopsy tomorrow as there is no reason to wait. So we will see how that works out as time goes by because no one has formally stated that it is going to happen for sure on Monday.
So that was the day, very quiet and nice!
Bob
November 22, 2008 7:30 PM
Did not think that I would get today’s entry in. The internet has been down all day. Just came up at 6:45. I suffered the same thing on Monday – but it came up early Monday afternoon.
Well, I think that I am the “patient that time forgot”. Things have been going so well that the nurses are basically just giving me antibiotics. This happens twice a day so that for a good portion of the day I am unhooked from the IV. Not that it makes much difference, I can’t really go anywhere anyway! The rest of the day, I am basically ignored as there are other patients here who require a lot of constant care. In fact, the nurse last night told me as much as she said that she was a fill-in for someone so they gave her a patient with high demands and me because there really is little or nothing to do for me.
My job now is to just sit here and watch my counts continue to rise as they should. Everyone’s timing is different. But, when I reach certain milestone numbers, I will then be able to go home. Won’t be for at least a week and, even though I am eager to leave, I do not wish to rush it. Everything in its due time!
As expected, the news came through that my sister was not a match for the bone marrow transplant. They have not yet started to peruse the bone marrow bank yet as they want to make sure that I can stay in remission for a while. So, as I said before, the future is a little cloudy at this point and we’ll just take it one day at a time.
I’ve shared with you that family and friends have been bringing me food as I have been valiantly trying to avoid having to order from the hospital menu at all costs. This was confirmed once again today, when Nancy was going to be late, forcing me to order lunch. I ordered the BLT on toast and fries. Sounds good! Uh! Uh! The fries were luke warm at best and the toast was so cold that I think you could have used it as one of those freezer bags that you put inside thermal containers to keep things cold.
Anyway! Yesterday, Nancy brought me one of my favorite dishes – sausages in tomato sauce that have stewed in the crock pot all day and spaghetti. At 1:00, as I am wolfing down this delicacy, a woman arrives from downstairs who proceeds to tell me, “Mr. Johnson, the nutritionist says that you have to eat!” Apparently, if you are not ordering food from the gourmet hospital menu – you must be starving yourself to death! I must admit, however, that given the overall food quality, the option does have a certain appeal!
Bob
Well, I think that I am the “patient that time forgot”. Things have been going so well that the nurses are basically just giving me antibiotics. This happens twice a day so that for a good portion of the day I am unhooked from the IV. Not that it makes much difference, I can’t really go anywhere anyway! The rest of the day, I am basically ignored as there are other patients here who require a lot of constant care. In fact, the nurse last night told me as much as she said that she was a fill-in for someone so they gave her a patient with high demands and me because there really is little or nothing to do for me.
My job now is to just sit here and watch my counts continue to rise as they should. Everyone’s timing is different. But, when I reach certain milestone numbers, I will then be able to go home. Won’t be for at least a week and, even though I am eager to leave, I do not wish to rush it. Everything in its due time!
As expected, the news came through that my sister was not a match for the bone marrow transplant. They have not yet started to peruse the bone marrow bank yet as they want to make sure that I can stay in remission for a while. So, as I said before, the future is a little cloudy at this point and we’ll just take it one day at a time.
I’ve shared with you that family and friends have been bringing me food as I have been valiantly trying to avoid having to order from the hospital menu at all costs. This was confirmed once again today, when Nancy was going to be late, forcing me to order lunch. I ordered the BLT on toast and fries. Sounds good! Uh! Uh! The fries were luke warm at best and the toast was so cold that I think you could have used it as one of those freezer bags that you put inside thermal containers to keep things cold.
Anyway! Yesterday, Nancy brought me one of my favorite dishes – sausages in tomato sauce that have stewed in the crock pot all day and spaghetti. At 1:00, as I am wolfing down this delicacy, a woman arrives from downstairs who proceeds to tell me, “Mr. Johnson, the nutritionist says that you have to eat!” Apparently, if you are not ordering food from the gourmet hospital menu – you must be starving yourself to death! I must admit, however, that given the overall food quality, the option does have a certain appeal!
Bob
November 21, 2008 7:50 PM
Well, I think that it will be a short entry for tonight. Obviously, the big news of the day came out earlier. Now, it gets to be a waiting game as to when my counts come up before I can go home. Additionally, there will most likely be another marrow biopsy coming up somewhere along the way because the doctor wants to err on the side of caution and make sure that I am in full remission. I have to be in full remission to have the bone marrow transplant.
Today’s news means that more than likely I have another few weeks to look forward to here in the hospital while my body gets back in shape (was I ever in shape?). I have to admit that I am now losing weight (~12 pounds so far), but I do not recommend the chemo diet plan for everyone! Also, the hair is still there -actually, there is more of it since I still cannot shave. But, I am told that in the next week or 2 that could all change. I can hardly wait!
The doctors continue to say that my counts are progressing as expected which is another good sign as well.
Still a lot of unanswered questions as to the timing once I go home – but we’ll cross that bridge when we come to it. I continue to take it one day at a time. If we continue to win the battles (big and little) – the war will be won!!!!
Bob
Today’s news means that more than likely I have another few weeks to look forward to here in the hospital while my body gets back in shape (was I ever in shape?). I have to admit that I am now losing weight (~12 pounds so far), but I do not recommend the chemo diet plan for everyone! Also, the hair is still there -actually, there is more of it since I still cannot shave. But, I am told that in the next week or 2 that could all change. I can hardly wait!
The doctors continue to say that my counts are progressing as expected which is another good sign as well.
Still a lot of unanswered questions as to the timing once I go home – but we’ll cross that bridge when we come to it. I continue to take it one day at a time. If we continue to win the battles (big and little) – the war will be won!!!!
Bob
November 21, 2008 11:20 AM
Special news break!!!!!
My test results came back from the bone marrow biopsy and there was NO SIGN OF THE LEUKEMIA.!!!!
So everything continues according to plan!!!
More updates later on today!
Bob
My test results came back from the bone marrow biopsy and there was NO SIGN OF THE LEUKEMIA.!!!!
So everything continues according to plan!!!
More updates later on today!
Bob
November 20, 8:55 PM
Well, it was another day in limbo. The results were not yet back from the bone marrow biopsy. And, of course, everything from here on out hinges upon that test. Foodwise, Nancy brought me a Wendy’s double cheeseburger along with the fries which made for a delicious lunch.
But it was a bittersweet day as well. Those of you who are dog owners will fully understand. For the past 8 and ½ years we have owned a weimaraner. He’s a lovable dog but very full of energy – which is the nature of the breed. However, we have now lived in a condo for the past 2 years and a large dog and condos do not mix very well. He has to remain inside except for “those moments”. Condo rules forbid tying him up outside. With my wife coming to the hospital all day, every day it makes it almost impossible for him to go outside when he needs to. Additionally, having to shoulder the clean up burden and shoveling out a “spot” whenever it snows further add to the upkeep list. Regrettably, there was no way that he could stay. As an aside, it is also not recommended that pets be around when I get home from the hospital.
Coupled with all this is the fact that he has had Addison’s disease for over 4 years which requires a percortan shot once a month to the tune of $120-$140. Without the shot, within a month he will die. With the shot – he is as healthy as he can be. This, obviously, further added on to the complications in trying to find him a new home. However, we were willing to pick up the shot costs. Long story short, Nancy has been working feverishly with friends to find him another home. Today, through a reference from a friend, she introduced him to a couple in Canterbury, NH who have agreed to take him. On Saturday, she will drop him off along with all his belongings and he can begin the next chapter in his life in a beautiful country setting where he can once again enjoy the lifestyle that a dog should enjoy.
This has, obviously, been a painful side effect to my disease. But, I have to rationalize it to myself that our loss has been more than made up for by the value of his gain. As I write this, I have tears in my eyes because a faithful friend will no longer be there for me when I get home.
As I said before, this blog is a catharsis for me and I need it to be able to express the thoughts and feelings that lie bottled up inside me. Thank you all for putting up with some of the stuff that I have chosen to write about.
Change of subject. Along with the hospital Johnny that you get, they also provide you with something that I will loosely call a pair of pants. These “pants” were obviously designed by someone who had no intention of ever wearing them. These, of course, are a “one size fits all” affair which, fortunately for me, are just about my size. Now, the most ideal solution for this application is the elastic banded sweat pant type of design. But, no! no! no! We have to go with the thin cord around the waist that you must tie and we must vary the cord length for each pair such that you never know if any particular pair will fit! Likewise, should you tie the tie in a comfortable position, the pants are designed to immediately fall down when you get up to walk. If you want them to stay up you must cinch them around your waist like you were fastening a load of lumber onto you car’s roof rack. It can get so bad at times that the nurses sometimes check you for bruises. But, never fear, the designers had the forethought to make the cord material such that the knot would eventually slip out over time and the pants ultimately fall down once gain.
So you are left with 3 modes, cinch mode which temporarily works as long as you are in abject pain, comfort mode which means that you must constantly walk around clutching the waistband of the pants with one hand otherwise they are on the floor, and no pants mode whereby you go sans pants at the expense of immediately losing all your family and friends as visitors!
That is my rant for the day!
I still feel fine. I feel the same today as I have every other day that I have been here. This tends to make this whole experience seem surrealistic to me at times and I sometimes wonder if I am just going to wake up at some moment and find out that it was all a bad dream……
Bob
But it was a bittersweet day as well. Those of you who are dog owners will fully understand. For the past 8 and ½ years we have owned a weimaraner. He’s a lovable dog but very full of energy – which is the nature of the breed. However, we have now lived in a condo for the past 2 years and a large dog and condos do not mix very well. He has to remain inside except for “those moments”. Condo rules forbid tying him up outside. With my wife coming to the hospital all day, every day it makes it almost impossible for him to go outside when he needs to. Additionally, having to shoulder the clean up burden and shoveling out a “spot” whenever it snows further add to the upkeep list. Regrettably, there was no way that he could stay. As an aside, it is also not recommended that pets be around when I get home from the hospital.
Coupled with all this is the fact that he has had Addison’s disease for over 4 years which requires a percortan shot once a month to the tune of $120-$140. Without the shot, within a month he will die. With the shot – he is as healthy as he can be. This, obviously, further added on to the complications in trying to find him a new home. However, we were willing to pick up the shot costs. Long story short, Nancy has been working feverishly with friends to find him another home. Today, through a reference from a friend, she introduced him to a couple in Canterbury, NH who have agreed to take him. On Saturday, she will drop him off along with all his belongings and he can begin the next chapter in his life in a beautiful country setting where he can once again enjoy the lifestyle that a dog should enjoy.
This has, obviously, been a painful side effect to my disease. But, I have to rationalize it to myself that our loss has been more than made up for by the value of his gain. As I write this, I have tears in my eyes because a faithful friend will no longer be there for me when I get home.
As I said before, this blog is a catharsis for me and I need it to be able to express the thoughts and feelings that lie bottled up inside me. Thank you all for putting up with some of the stuff that I have chosen to write about.
Change of subject. Along with the hospital Johnny that you get, they also provide you with something that I will loosely call a pair of pants. These “pants” were obviously designed by someone who had no intention of ever wearing them. These, of course, are a “one size fits all” affair which, fortunately for me, are just about my size. Now, the most ideal solution for this application is the elastic banded sweat pant type of design. But, no! no! no! We have to go with the thin cord around the waist that you must tie and we must vary the cord length for each pair such that you never know if any particular pair will fit! Likewise, should you tie the tie in a comfortable position, the pants are designed to immediately fall down when you get up to walk. If you want them to stay up you must cinch them around your waist like you were fastening a load of lumber onto you car’s roof rack. It can get so bad at times that the nurses sometimes check you for bruises. But, never fear, the designers had the forethought to make the cord material such that the knot would eventually slip out over time and the pants ultimately fall down once gain.
So you are left with 3 modes, cinch mode which temporarily works as long as you are in abject pain, comfort mode which means that you must constantly walk around clutching the waistband of the pants with one hand otherwise they are on the floor, and no pants mode whereby you go sans pants at the expense of immediately losing all your family and friends as visitors!
That is my rant for the day!
I still feel fine. I feel the same today as I have every other day that I have been here. This tends to make this whole experience seem surrealistic to me at times and I sometimes wonder if I am just going to wake up at some moment and find out that it was all a bad dream……
Bob
November 19, 2008 9:45 PM
Ok! Another somewhat quiet day as I anxiously await the results of yesterday’s bone marrow biopsy. As each day unfolds, you can see that the nurses have everything nicely scheduled out as to what happens to me when. From shower breaks, to IV fill ups, to meds, etc. everything basically runs like clockwork. How they manage to pull this off without using Microsoft Project; without setting up fixed deadlines with interim milestone checkpoints; without developing mitigation plans, and, most importantly, without holding frequent meetings is beyond me! I guess that there must be more than one way to schedule activities. Who knew?????
Had lots of company today – my sister-in-law, brother-in-law, and niece stopped by and while they were here, some other friends stopped by as well. At that point, the new, smaller room was really a handicap. It felt like having a convention in an elevator. We played cards and had a great time!
Once again, Nancy brought me lunch from downstairs – a steak sandwich – which was fantastic! It keeps me from having to order the hospital food which is a huuuuge plus.
One thing that I continually neglect to mention is that the TV around here actually offers the Al Jazeera channel! I’m going to have to push to see if Comcast can offer it as well! You get so hooked on it so easily!!!!!!!!
So, we are playing the waiting game. It’s the only game in town and it’s far preferable to the situations that exist with a number of my fellow patients. Again, things are going very well and I continue to ask for your prayers to maintain that status.
Thanks,
Bob
Had lots of company today – my sister-in-law, brother-in-law, and niece stopped by and while they were here, some other friends stopped by as well. At that point, the new, smaller room was really a handicap. It felt like having a convention in an elevator. We played cards and had a great time!
Once again, Nancy brought me lunch from downstairs – a steak sandwich – which was fantastic! It keeps me from having to order the hospital food which is a huuuuge plus.
One thing that I continually neglect to mention is that the TV around here actually offers the Al Jazeera channel! I’m going to have to push to see if Comcast can offer it as well! You get so hooked on it so easily!!!!!!!!
So, we are playing the waiting game. It’s the only game in town and it’s far preferable to the situations that exist with a number of my fellow patients. Again, things are going very well and I continue to ask for your prayers to maintain that status.
Thanks,
Bob
November 18, 2008 7:40 PM
It was a little different today what with having the bone marrow biopsy on the schedule. I was supposed to occur around 10;30 but did not get underway until around 11;45. At that point, Nancy had to leave and my sister arrived. Since my brother-in-law was undergoing a procedure elsewhere in the hospital – she thought that she might have the opportunity to catch lunch with my wife. Not to be as Nancy had to leave for a doctor’s appointment on her own.
I was no help either as they did their best to knock me out right after the procedure so that I slept the bulk of the afternoon. Believe me when I tell you that this was the best gift that I could ever have. The prior 2 nights were no different than Saturday night with frequent bathroom calls interrupting any form of sleep pattern. As bad as that is, I can usually make up for lost time by catnapping in a chair during the day. All in all I did feel bad that I could not see my sister but I was just too zonked!!!
The initial results from the biopsy were inconclusive. I was led to believe that this is rather normal. The real proof of the pudding will be available on Friday and we are hanging on pins and needles awaiting that result. If I could drink at this standpoint, a few gin and tonics would do the trick so nicely right now!
My counts have either stabilized, or in the case of the lowered counts, have started to give the appearance of turning around. This, and several other things that have happened over the past few days all indicate that a corner has been turned. Yeah!!!
I also want to thank all of you who continue to send me cards. Mail call at the end of the day is a highlight for me as I get to open cards from current friends, friends of friends, friends of family members, and from people whose lives touched mine a long time ago and who have long since moved away. As the word gets around, the support base gets stronger and stronger. I need all of that strength to get me through this.
Your support has been remarkable for which I can never thank you enough.
Bob
I was no help either as they did their best to knock me out right after the procedure so that I slept the bulk of the afternoon. Believe me when I tell you that this was the best gift that I could ever have. The prior 2 nights were no different than Saturday night with frequent bathroom calls interrupting any form of sleep pattern. As bad as that is, I can usually make up for lost time by catnapping in a chair during the day. All in all I did feel bad that I could not see my sister but I was just too zonked!!!
The initial results from the biopsy were inconclusive. I was led to believe that this is rather normal. The real proof of the pudding will be available on Friday and we are hanging on pins and needles awaiting that result. If I could drink at this standpoint, a few gin and tonics would do the trick so nicely right now!
My counts have either stabilized, or in the case of the lowered counts, have started to give the appearance of turning around. This, and several other things that have happened over the past few days all indicate that a corner has been turned. Yeah!!!
I also want to thank all of you who continue to send me cards. Mail call at the end of the day is a highlight for me as I get to open cards from current friends, friends of friends, friends of family members, and from people whose lives touched mine a long time ago and who have long since moved away. As the word gets around, the support base gets stronger and stronger. I need all of that strength to get me through this.
Your support has been remarkable for which I can never thank you enough.
Bob
November 17, 2008 8:20 PM
Well, my wife just left for the evening as I sit here and begin composing today’s entry. It was a pretty good day, however. The bummer being that I only dodged the “moving” bullet for 2 days and was forced to relocate to a single room. It seems so cramped in here. However, I know that if I initially started here, I would never have been spoiled like I was and the new room would be more acceptable. I tried to tell them that that moving me was going to be a huge setback on my road to recovery – but they wouldn’t buy it!
Also, they tell that there is a great view through the window. However, it was dark at the time we moved and I never really could see much of anything. Anyway, I would gladly trade for more space than for a view so the new room is certainly a comedown. The new room number is 6D77.
Some friends came by and brought me a Pizza Hut personal pan pizza for lunch. It was the perfect touch for the day. It sure beats any food that you can get in here – life is sooooo good!
My new attending physician and “entourage” came through for a whirlwind visit this morning.(they rotate every so often – I think its once a month) The only comment from his lips was that he heard that I have “breezed through everything”. I can only go by how I feel and that is still very good! I know that all your prayers have played a major role in my ability to cope with everything so far and I thank you all profusely. Believe you me – I’m no hero - I’ll gladly breeze through this process from start to end!!!
The only major side effect that I suffered during the chemo was the loss of my taste buds. But it was worse than that! You are left with this lousy, indescribable taste in your mouth that overpowers everything that you eat or drink. So even though you want to, you cannot physically get anything into your mouth! Fortunately, as I said a few days ago, my taste buds are making a progressive comeback and eating/drinking are not the problems that they once were. Obviously, since I have had chili, a pastrami sub, and a pizza over the past few days, food is definitely tasting a lot better. It was very nice that no one ever told me about this little tidbit. As for the losing of hair – everything is still there! In fact, because I cannot shave, I am looking grubbier than ever! So much for personal vanity!
Tomorrow is the day for the bone marrow biopsy – but the telling day will be near the end of the week when the results are known. Please pray for full remission which will require me to stay here for only another two weeks before going home in preparation for round 2 – whatever that will be.
Bob
Also, they tell that there is a great view through the window. However, it was dark at the time we moved and I never really could see much of anything. Anyway, I would gladly trade for more space than for a view so the new room is certainly a comedown. The new room number is 6D77.
Some friends came by and brought me a Pizza Hut personal pan pizza for lunch. It was the perfect touch for the day. It sure beats any food that you can get in here – life is sooooo good!
My new attending physician and “entourage” came through for a whirlwind visit this morning.(they rotate every so often – I think its once a month) The only comment from his lips was that he heard that I have “breezed through everything”. I can only go by how I feel and that is still very good! I know that all your prayers have played a major role in my ability to cope with everything so far and I thank you all profusely. Believe you me – I’m no hero - I’ll gladly breeze through this process from start to end!!!
The only major side effect that I suffered during the chemo was the loss of my taste buds. But it was worse than that! You are left with this lousy, indescribable taste in your mouth that overpowers everything that you eat or drink. So even though you want to, you cannot physically get anything into your mouth! Fortunately, as I said a few days ago, my taste buds are making a progressive comeback and eating/drinking are not the problems that they once were. Obviously, since I have had chili, a pastrami sub, and a pizza over the past few days, food is definitely tasting a lot better. It was very nice that no one ever told me about this little tidbit. As for the losing of hair – everything is still there! In fact, because I cannot shave, I am looking grubbier than ever! So much for personal vanity!
Tomorrow is the day for the bone marrow biopsy – but the telling day will be near the end of the week when the results are known. Please pray for full remission which will require me to stay here for only another two weeks before going home in preparation for round 2 – whatever that will be.
Bob
Novemebr 16, 2008 8:35 PM
Sunday is the 7th day – the day of rest. For me there is basically no change from the other 6 days but you could notice that the normal hospital hustle and bustle seemed to be turned down a notch. My daughter Jen and her husband visited today and, of course, my wife was here as she is everyday. We had a pleasant visit and they brought the sandwich the sandwich that I requested yesterday and it was delicious.
But there is something about Sunday that I now miss tremendously. And that is the opportunity to go to church! I need that time to help center my life, to look back on the prior week, to peek ahead at the week to come, to visit with my friends, to help me better put my life in perspective, and to better connect with God. For me, its absence leaves an emptiness that can be filled in no other way.
I was somewhat tired today as I think I responded to a record number of bathroom calls last night. Hopefully, that will not be the case tonight.
Other than that, the ever necessary numbers continue to look good and we continue on plan.
In closing for today, I want to thank every one who has taken the time to send me a card. The number of cards that I have received is overwhelming and it is a big boost to know that so many of you are thinking of me.
Bob
But there is something about Sunday that I now miss tremendously. And that is the opportunity to go to church! I need that time to help center my life, to look back on the prior week, to peek ahead at the week to come, to visit with my friends, to help me better put my life in perspective, and to better connect with God. For me, its absence leaves an emptiness that can be filled in no other way.
I was somewhat tired today as I think I responded to a record number of bathroom calls last night. Hopefully, that will not be the case tonight.
Other than that, the ever necessary numbers continue to look good and we continue on plan.
In closing for today, I want to thank every one who has taken the time to send me a card. The number of cards that I have received is overwhelming and it is a big boost to know that so many of you are thinking of me.
Bob
November 15, 2008 7:40 PM
Well, it certainly was a quiet day. But not one without any moments. Medicationwise, all that was needed was some potassium, the last day of the anti-nausea drug (yeah!!), and an anti-biotic.
I am now officially neutropenic which means that my white blood cell count (neutrophils) is so low that should I contact any type of infection – it could be life threatening. This is to last 7 to 10 days and the expectation is that my body will then start to build up those counts on its own. As to how your body feels – you have no clue that you are in this state. From a hospital standpoint, it means that they monitor everything verrrrry closely and backfill with various IV treatments as necessary to make sure that my other counts are at the proper. I think the doctor put it best this morning when I commented that we are in a holding pattern for a while – he said that it was more like “protective custody”.
My appetite and ability to eat have returned rather quickly with the cessation of the chemo on Wednesday. For lunch today, I had a bowl of chili from the Au Bon Pain downstairs and it was really tasty! When the nurse was informed of this later on, she was incredulous that I could eat something as spicy as that so soon after the completion of the chemo. Tomorrow for lunch, I’ve asked my daughter to bring me a pastrami and cheese sandwich – I am so looking forward to that!
I have to have food brought in. Because, other than some breakfast foods, the food that I have ordered ranges from barely palatable to completely inedible. When I informed the nurse of my opinion this morning she claimed that the quality of the food has improved! If so, I wonder what the rank below inedible is!
I had a substitute doctor drop by this afternoon. He could not believe how well I was doing for someone who had just come through chemo. Reading between the lines, my wife and I gathered that I was supposed to be so drained by the chemo experience that I would be barely able to function at this point.
Also had a minor scare when they came in and said that I would have to change rooms! As I said before, this is a double room with the other bed removed so it allows us to set up a “lounge area” without everyone being crowded around the bed. Reluctantly, we made ready to move. After having done that, they came back and said that the move was off! Thank God we dodged that bullet! Hopefully permanently – but I have my doubts.
No visitors today. My sister-in-law and brother-in-law were going to come but they had to take my mother-in-law to the hospital to be treated for bronchitis and rightfully decided to not risk coming here afterward. I am eternally grateful!
In a nutshell, my health is still excellent for someone in my condition and we are still moving forward according to plan.
Bob
I am now officially neutropenic which means that my white blood cell count (neutrophils) is so low that should I contact any type of infection – it could be life threatening. This is to last 7 to 10 days and the expectation is that my body will then start to build up those counts on its own. As to how your body feels – you have no clue that you are in this state. From a hospital standpoint, it means that they monitor everything verrrrry closely and backfill with various IV treatments as necessary to make sure that my other counts are at the proper. I think the doctor put it best this morning when I commented that we are in a holding pattern for a while – he said that it was more like “protective custody”.
My appetite and ability to eat have returned rather quickly with the cessation of the chemo on Wednesday. For lunch today, I had a bowl of chili from the Au Bon Pain downstairs and it was really tasty! When the nurse was informed of this later on, she was incredulous that I could eat something as spicy as that so soon after the completion of the chemo. Tomorrow for lunch, I’ve asked my daughter to bring me a pastrami and cheese sandwich – I am so looking forward to that!
I have to have food brought in. Because, other than some breakfast foods, the food that I have ordered ranges from barely palatable to completely inedible. When I informed the nurse of my opinion this morning she claimed that the quality of the food has improved! If so, I wonder what the rank below inedible is!
I had a substitute doctor drop by this afternoon. He could not believe how well I was doing for someone who had just come through chemo. Reading between the lines, my wife and I gathered that I was supposed to be so drained by the chemo experience that I would be barely able to function at this point.
Also had a minor scare when they came in and said that I would have to change rooms! As I said before, this is a double room with the other bed removed so it allows us to set up a “lounge area” without everyone being crowded around the bed. Reluctantly, we made ready to move. After having done that, they came back and said that the move was off! Thank God we dodged that bullet! Hopefully permanently – but I have my doubts.
No visitors today. My sister-in-law and brother-in-law were going to come but they had to take my mother-in-law to the hospital to be treated for bronchitis and rightfully decided to not risk coming here afterward. I am eternally grateful!
In a nutshell, my health is still excellent for someone in my condition and we are still moving forward according to plan.
Bob
November 14, 2008 6:55
Today was a busy day. Nurses, doctors, visitors, and other hospital help were in and out all day. The main reason was they had to fill me up with so much stuff – blood, platelets, electrolytes, antibiotics of several types, etc. that it took all day to accomplish the task. Believe it or not - because there are only 2 lines in, they actually go through the process of setting up a line time schedule for each bag! In some instances they can T 2 things together and buy another line for a while.
It was also an ironic day in a way. Because I am in here, I had to cancel my doctor’s appointment this morning. It was merely a precaution, but I wanted to have a small lump checked to make sure that it was not cancerous! I don’t think that I am not quite so concerned about it at this point.
I also got a visit from my parish priest. He spent most of the afternoon here and I think it was beneficial for both parties. For me, I think that the reasons are quite obvious. But for him - he said that he was surprised to see me in such good shape!
My daughter, Jen, and my wife were here for a while as well. They left early in order to go home and go out to dinner with her family to celebrate her birthday of yesterday. I have to admit that not being able to attend family events like that is really a bummer! But life must go on for all those around me and we can all look forward to the day when I will be back. I am sure that it will make next year’s celebration that much more special!
In any case, take it from my priest. Even though my counts are down low (the way they are supposed to be), I do look good for a man who isn’t supposed to look good and I do feel fine for a man who isn’t supposed to feel fine either! As I am writing this, I am also not tethered to my IV pole – and I don’t miss it a bit! Being able to walk around without that thing makes me feel like a human once again!
So there is now a bit of normality to my life. I can feel my appetite slowly returning and I think that my taste buds are also making a recovery as well. These are certainly good signs that I am starting on the road back.
Kind of a quiet entry for today. But, rest assured, it was most certainly a day full of positives.
The Jets were lucky!!!
Bob
It was also an ironic day in a way. Because I am in here, I had to cancel my doctor’s appointment this morning. It was merely a precaution, but I wanted to have a small lump checked to make sure that it was not cancerous! I don’t think that I am not quite so concerned about it at this point.
I also got a visit from my parish priest. He spent most of the afternoon here and I think it was beneficial for both parties. For me, I think that the reasons are quite obvious. But for him - he said that he was surprised to see me in such good shape!
My daughter, Jen, and my wife were here for a while as well. They left early in order to go home and go out to dinner with her family to celebrate her birthday of yesterday. I have to admit that not being able to attend family events like that is really a bummer! But life must go on for all those around me and we can all look forward to the day when I will be back. I am sure that it will make next year’s celebration that much more special!
In any case, take it from my priest. Even though my counts are down low (the way they are supposed to be), I do look good for a man who isn’t supposed to look good and I do feel fine for a man who isn’t supposed to feel fine either! As I am writing this, I am also not tethered to my IV pole – and I don’t miss it a bit! Being able to walk around without that thing makes me feel like a human once again!
So there is now a bit of normality to my life. I can feel my appetite slowly returning and I think that my taste buds are also making a recovery as well. These are certainly good signs that I am starting on the road back.
Kind of a quiet entry for today. But, rest assured, it was most certainly a day full of positives.
The Jets were lucky!!!
Bob
November 13, 2008 5:55 PM
Let’s begin with the really good news! Happy Birthday, Jen!!! (She’s one of my daughters)
Well, I am sitting here pondering what to say today. In many ways, it’s been uneventful. In other ways, it has its fair share of things that have gone on.
Of course, the biggy is that the 7 day chemo regimen is over. It means that I do not have to remain tethered to an IV pole 24/7. What does that mean? It means that I can now shower! Which is precisely what I did this morning! It also means that at times, I can feel like a real live human being because I do not have to be connected to it 24/7 any longer! When I first got here, the nurses told me that some patients were not only physically attached to the pole – they became emotionally attached as well and would give the pole a name! Personally, I think that there must be something seriously missing in your love life if you have to backfill it with an IV pole!
More importantly, everything is still going according to plan. But, for me, there is still an element of the surreal about everything. I have felt fine from the get go and continue to so. Other than being tired at times, I have never had any problems. I am certainly not complaining, mind you, and I am grateful for every “feel good” moment. I would certainly have to say that any and all prayers have been answered so far. And I thank each and every one of you who is thinking of me in that regard.
Next Tuesday is when the bone marrow biopsy will be done according to the doctor’s comments this morning. Final results will be available on Friday. That result is a BIG DEAL. Because if everything is in full remission, I get to stay here for another 2 weeks and then go home for a bit before we launch in part 2 of the program. If it is not in remission, then I go back to a 5 day chemo regimen and have to remain here for another 4 weeks. For all of you who are praying for me – let me give you a hint – I prefer the 2 week option!!
As an aside, so many of you have commented about my writing style. As I said at the outset it was just going to be a stream of consciousness thing about what is going on here. That is what makes it so easy to write about. I know that I get carried away with it at times and have a little fun. But, you know, I have the time and that’s me! And isn’t that what writing is all about – taking you and your thoughts and simply bringing them to the printed (in this case, electronic!) page. I’m glad that you enjoy the entries and I am happy to get such comments because it means that I am not writing simply to express myself but that there are many people who do care enough to take the time to read my meanderings and find them of some value. Again, thanks to all of you!
Funny, when I sit down to compose the entry for the day, I kind of wonder what I am going to say and before you know it - a whole page of ideas have been put down. I keep thinking that I have set the bar so high that I will feel like I’m shortchanging everyone if I don’t keep up the pace. But, you know what? I’ll get over it!
Tonight’s the Pats game which, obviously, I will watch.
Go Pats (sorry Paul)
Bob
Well, I am sitting here pondering what to say today. In many ways, it’s been uneventful. In other ways, it has its fair share of things that have gone on.
Of course, the biggy is that the 7 day chemo regimen is over. It means that I do not have to remain tethered to an IV pole 24/7. What does that mean? It means that I can now shower! Which is precisely what I did this morning! It also means that at times, I can feel like a real live human being because I do not have to be connected to it 24/7 any longer! When I first got here, the nurses told me that some patients were not only physically attached to the pole – they became emotionally attached as well and would give the pole a name! Personally, I think that there must be something seriously missing in your love life if you have to backfill it with an IV pole!
More importantly, everything is still going according to plan. But, for me, there is still an element of the surreal about everything. I have felt fine from the get go and continue to so. Other than being tired at times, I have never had any problems. I am certainly not complaining, mind you, and I am grateful for every “feel good” moment. I would certainly have to say that any and all prayers have been answered so far. And I thank each and every one of you who is thinking of me in that regard.
Next Tuesday is when the bone marrow biopsy will be done according to the doctor’s comments this morning. Final results will be available on Friday. That result is a BIG DEAL. Because if everything is in full remission, I get to stay here for another 2 weeks and then go home for a bit before we launch in part 2 of the program. If it is not in remission, then I go back to a 5 day chemo regimen and have to remain here for another 4 weeks. For all of you who are praying for me – let me give you a hint – I prefer the 2 week option!!
As an aside, so many of you have commented about my writing style. As I said at the outset it was just going to be a stream of consciousness thing about what is going on here. That is what makes it so easy to write about. I know that I get carried away with it at times and have a little fun. But, you know, I have the time and that’s me! And isn’t that what writing is all about – taking you and your thoughts and simply bringing them to the printed (in this case, electronic!) page. I’m glad that you enjoy the entries and I am happy to get such comments because it means that I am not writing simply to express myself but that there are many people who do care enough to take the time to read my meanderings and find them of some value. Again, thanks to all of you!
Funny, when I sit down to compose the entry for the day, I kind of wonder what I am going to say and before you know it - a whole page of ideas have been put down. I keep thinking that I have set the bar so high that I will feel like I’m shortchanging everyone if I don’t keep up the pace. But, you know what? I’ll get over it!
Tonight’s the Pats game which, obviously, I will watch.
Go Pats (sorry Paul)
Bob
November 12, 2008 9:10 PM
Boy, I never thought that I would get the opportunity to write today’s entry. For most of the day, my energy level was about zero. Obviously the chemo plays a big part in that; but it doesn’t help when you visit the bathroom every ½ hour either. Another major issue is that every night from about 4 to 7, the heating system goes into Amazon jungle mode and the temperature must be 85 degrees in here. It is so stifling that you cannot breathe, your clothing gets soaked and so does the bed linens. And there is nothing you can do about it! There is no reliable way to adjust the heat in the room. I think that I am going to have to ask 1 of the nurses to come in and fan me!
I feel better now because later in the day they have started to load me up with so much stuff to make up for the effect of the chemo. All day long when my wife was here, I was a dishrag. Now that she had to leave and go home, I feel a lot better.
My sister came by today to have her blood taken to see if she is a viable bone marrow donor candidate. As I said before it’s only a 1 in 4 shot but you have to try. She says that if she is the donor that I will owe her “big time”. Well I can see that she has neglected to take into account all of the wonderful things that I did for (to) her when we were growing up! I think that if she really puts it all in perspective she will come around to my way of thinking and see that this should just about draw us even!
While I was shaving this morning, the nurse came in and almost had a heart attack! No one told me that I was not allowed to shave! Having little or no white blood cells means that any cut has much less of a chance to heal. So now I will be growing a mustache and a beard. Come to find out, according to one of the nurses, you really have no idea what hair you will lose. Men do not always lose their facial hair – including eyebrows and eyelashes. We’ll see what happens in my case. As an aside, my wife wants me to lose the hair in my ears!
Big event later tonight – the chemo ends!!!!! It’s been 7 days – time flies when you’re having fun! It really has been uneventful – thank God. I wrestled with a little nausea 3 or 4 times but it was fleeting and it did not go beyond that. So a week of waiting now begins in preparation for the bone marrow biopsy next week.
In short, right now I am feeling fine and everything is still on track.
Bob
I feel better now because later in the day they have started to load me up with so much stuff to make up for the effect of the chemo. All day long when my wife was here, I was a dishrag. Now that she had to leave and go home, I feel a lot better.
My sister came by today to have her blood taken to see if she is a viable bone marrow donor candidate. As I said before it’s only a 1 in 4 shot but you have to try. She says that if she is the donor that I will owe her “big time”. Well I can see that she has neglected to take into account all of the wonderful things that I did for (to) her when we were growing up! I think that if she really puts it all in perspective she will come around to my way of thinking and see that this should just about draw us even!
While I was shaving this morning, the nurse came in and almost had a heart attack! No one told me that I was not allowed to shave! Having little or no white blood cells means that any cut has much less of a chance to heal. So now I will be growing a mustache and a beard. Come to find out, according to one of the nurses, you really have no idea what hair you will lose. Men do not always lose their facial hair – including eyebrows and eyelashes. We’ll see what happens in my case. As an aside, my wife wants me to lose the hair in my ears!
Big event later tonight – the chemo ends!!!!! It’s been 7 days – time flies when you’re having fun! It really has been uneventful – thank God. I wrestled with a little nausea 3 or 4 times but it was fleeting and it did not go beyond that. So a week of waiting now begins in preparation for the bone marrow biopsy next week.
In short, right now I am feeling fine and everything is still on track.
Bob
November 11, 2008 9:45 AM
I apologize for no blog entry for yesterday but at the end of the day when I have normally done it, I was a little bit under the weather battling a fever - which is to be expected. The fact that I am now doing this is a good indication that I have certainly overcome that minor setback and am feeling a lot better.
But I will tell you that the heating system in here leaves a lot to be desired. Either it kicks out cold air so that it feels like the arctic tundra or it kicks out warm air and you feel like you are deep in the Amazon jungle. Thus if you feel cold, you cannot be sure that it is simply the way the heat works or maybe you are actually running a fever. Ditto when you are feeling hot - it could simply be the heat once again.
My little IV pole yesterday had more stuff hanging on it than a Christmas tree - what with blood transfusions, chemo therapy, antibiotics, blood supplements, and a bunch of other stuff as well.
Had some visitors yesterday as well in the morning and afternoon - so in spite of my condition at the end of the day - it was a good day. Its always nice to connect with friends and family.
Now for the important stuff - my all important numbers are where they are supposed to be - so that is a good sign. I am now into day 6 of the chemo - only 1 more to go - but that is when all the fun starts because your counts are down and they have to be very watchful for any type of ailment because you have no resources to fight them.
I look forward to having an uneventful day today - will let you know later on.
Bob
But I will tell you that the heating system in here leaves a lot to be desired. Either it kicks out cold air so that it feels like the arctic tundra or it kicks out warm air and you feel like you are deep in the Amazon jungle. Thus if you feel cold, you cannot be sure that it is simply the way the heat works or maybe you are actually running a fever. Ditto when you are feeling hot - it could simply be the heat once again.
My little IV pole yesterday had more stuff hanging on it than a Christmas tree - what with blood transfusions, chemo therapy, antibiotics, blood supplements, and a bunch of other stuff as well.
Had some visitors yesterday as well in the morning and afternoon - so in spite of my condition at the end of the day - it was a good day. Its always nice to connect with friends and family.
Now for the important stuff - my all important numbers are where they are supposed to be - so that is a good sign. I am now into day 6 of the chemo - only 1 more to go - but that is when all the fun starts because your counts are down and they have to be very watchful for any type of ailment because you have no resources to fight them.
I look forward to having an uneventful day today - will let you know later on.
Bob
November 9, 2008 7:50 PM
It’s been a really good day - the Pats won! Other than that, as I said before, my appetite is ebbing and I definitely feel more tired. But, the good news is that the doctors are impressed with my numbers and continue to say that everything is going to plan. At 10:00 tonight, day 5 of chemo begins - leaving only 2 more after that. As you can see, I am not keeping score.
Speaking of keeping score, the nurses have placed a chart on the wall that monitors my counts as they go down and then as they go up. To make it interesting, we started a pool here to see which numbers get to zero first - my counts or the stock market! Likewise, I fully expect my numbers to back to normal faster as well.
Had some visitors today. Unfortunately, I think that I am fading as being good company because I require more frequent naps. Of course, I know that many of you will say “What’s the difference?”
I have been remiss in not thanking Michael Duffy’s mother for the beautiful shawl. Coincidentally, she knit it in my favorite colors. Many people say that there is no such thing as coincidences - only God incidences. I have seen it happen many times which only lends more credence to the saying for me.
All in all, a quiet day - just as the doctor ordered.
Bob
Speaking of keeping score, the nurses have placed a chart on the wall that monitors my counts as they go down and then as they go up. To make it interesting, we started a pool here to see which numbers get to zero first - my counts or the stock market! Likewise, I fully expect my numbers to back to normal faster as well.
Had some visitors today. Unfortunately, I think that I am fading as being good company because I require more frequent naps. Of course, I know that many of you will say “What’s the difference?”
I have been remiss in not thanking Michael Duffy’s mother for the beautiful shawl. Coincidentally, she knit it in my favorite colors. Many people say that there is no such thing as coincidences - only God incidences. I have seen it happen many times which only lends more credence to the saying for me.
All in all, a quiet day - just as the doctor ordered.
Bob
November 8, 2008 7:50 PM
The good news is that I am still bored. I feel pretty good - but I have to admit that the appetite is diminishing even more. All part of the process. If all I have to worry about is loss of appetite, then I am doing well.
One would think that by reducing your oral intake, you would begin to lose some weight. Not true! My weight has actually increased somewhat over the past few days - all due to the fluid that they keep flowing into you. So I cannot recommend this as a viable way to lose weight! I was viewing this whole process as a sure fire way to being svelte once again - that was approximately 35 years ago!
Not much going on today. Had some visitors which was nice and Nancy ended up going home shortly after 7. I keep telling her to leave at a reasonable hour so that she can go home and get some rest.
I do have a TV. But, not being a big TV fan, I have not turned it on for the last 2 days. Maybe I’ll watch the BC - Notre Dame tonight.
So, it feels good to be over the 3 day-2 drug hurdle and now only concentrate on the 1 drug for the last 4 days. The doctors keep asking me about feeling any nausea and/or the need to vomit. Neither issue has surfaced. So the medication and my asking God to make this as pleasant as possible all seen to be working.
Sorry that I can’t be more interesting - but boredom is wonderfulllllll!!!!!!
Bob
One would think that by reducing your oral intake, you would begin to lose some weight. Not true! My weight has actually increased somewhat over the past few days - all due to the fluid that they keep flowing into you. So I cannot recommend this as a viable way to lose weight! I was viewing this whole process as a sure fire way to being svelte once again - that was approximately 35 years ago!
Not much going on today. Had some visitors which was nice and Nancy ended up going home shortly after 7. I keep telling her to leave at a reasonable hour so that she can go home and get some rest.
I do have a TV. But, not being a big TV fan, I have not turned it on for the last 2 days. Maybe I’ll watch the BC - Notre Dame tonight.
So, it feels good to be over the 3 day-2 drug hurdle and now only concentrate on the 1 drug for the last 4 days. The doctors keep asking me about feeling any nausea and/or the need to vomit. Neither issue has surfaced. So the medication and my asking God to make this as pleasant as possible all seen to be working.
Sorry that I can’t be more interesting - but boredom is wonderfulllllll!!!!!!
Bob
November 7, 2008 7:10
OK. Time for another update as day 2 of the chemo is starting to come to a close. The main difference between today and yesterday is that my appetite is waning. As you can well imagine, this is a standard reaction to everything that is going on. According to the doctors, it is more important that I get liquid in my body than food. I am still allowed to eat anything that I want - even if I only desire to eat a bite or two.
That’s really the only negative at this point. I still feel fine and all my numbers are as they should be. So we are still proceeding according to plan.
My day was punctuated by a visit from a friend of mine whom I have known since I was 8 years old. It was a great time. Shortly after he left, my wife and daughter, Jennifer, arrived. We were joined by a hospital provided counselor who gave Nancy the greatest gift of all - the way to get free parking! The parking garage next to the hospital is a privately owned facility. The daily parking charge is $31 and there are no discounts offered! Figure it out! A minimum of 4 weeks(28 days) * $31 is $868 - what a rip! If I’m here for 6 weeks, its even worse! I think that the new administration should seriously consider offering free parking to everyone as well as all the other stuff we‘re supposed to get!
Unfortunately, the free parking is only made available to those who are closely related to patients in the hospital.
I am looking forward to concluding the 3 day portion of the chemo whereby I get 2 drugs so that I can get to only 1 drug which, supposedly, is the milder of the 2.
All in all, a quiet day - and that’s what everyone is looking for.
Bob
That’s really the only negative at this point. I still feel fine and all my numbers are as they should be. So we are still proceeding according to plan.
My day was punctuated by a visit from a friend of mine whom I have known since I was 8 years old. It was a great time. Shortly after he left, my wife and daughter, Jennifer, arrived. We were joined by a hospital provided counselor who gave Nancy the greatest gift of all - the way to get free parking! The parking garage next to the hospital is a privately owned facility. The daily parking charge is $31 and there are no discounts offered! Figure it out! A minimum of 4 weeks(28 days) * $31 is $868 - what a rip! If I’m here for 6 weeks, its even worse! I think that the new administration should seriously consider offering free parking to everyone as well as all the other stuff we‘re supposed to get!
Unfortunately, the free parking is only made available to those who are closely related to patients in the hospital.
I am looking forward to concluding the 3 day portion of the chemo whereby I get 2 drugs so that I can get to only 1 drug which, supposedly, is the milder of the 2.
All in all, a quiet day - and that’s what everyone is looking for.
Bob
November 6, 2008 5:55
OK, let’s start again.
The battle is now joined. Last night at 10:00, the chemo therapy began. This begins the regimen of 7 days for the IV chemo drug and 3 days for the “push” chemo drug. The latter requires about 10-15 minutes of a nurses time to push it into your system. Sounds kinda gross but its really not. Then comes the real fun. With all that liquid being put into you - it has to come out. So you spend half the night urinating and, since you are now awake, the other half thinking. Believe me when I say that the former accomplishes something while the latter does not. Needless to say, I felt some level of fear and trepidation before it began as this whole process is new to me - the need for chemo therapy, unfortunately, only befalls other people - never on us.
At present, I feel fine. This is completely normal as it takes several days for the effects of the drugs to take over. At that time, with my cell counts being low, any of a number of things could happen. But since each of us is a unique individual, no one can predict how it will play out. The nurses say that it can run the gamut from only being tired to having to undergo an extensive battle to fight off some kind of ailment. I should also state that before the process began, I received an anti-nausea drug which appears to be working fine. I have eaten both breakfast and lunch today with no problems.
Now for a bit of good news. I was talking with one of my doctors this morning about my blood count numbers. To a large extent they are normal with a few obvious exceptions caused by the leukemia. I asked him if there was any significance to that and he stated that it implied that I had a “light” case of leukemia. I hope this is not like being a “little bit” pregnant. In any case, because of this situation, he felt that my chances of achieving a full recovery are enhanced. As I had mentioned before, since the rest of my body was in “perfect” health(who needs a gym?), the doctors have the luxury of not holding back in my treatment which, once again, increases my chances for a full recovery. All of this was music to my ears. It’s a tune that I want to hear but it is the only music that I will be listening to for quite a while. It brings home the fact that I do miss the enjoyment of singing in my church choir. I love the camaraderie and it has always served as a great way to put the cares of everyday life aside for a while and just do something for the sheer fun of it.
The rest of this entry is going to be a mixed bag of things that have happened since yesterday’s entry and things that I have neglected to mention. So let’s start with some of the mundane. I am not allowed to brush my teeth. Pretty skeevy, eh? However, they give me a pill to dissolve in my mouth 4 times a day and a mouthwash to swish around twice a day. Even better, I am not allowed to shower for the next 7 days. So, if any of you are so inclined to want to visit me - it would appear that the sooner the better would be a good approach to take. I am sure that next week, even I would not like to visit me. Also, on the advice of several people, I decided to get a buzz cut on Monday prior to my entering the hospital on Tuesday. Everyone tells me how much younger it makes me look - no one tells me how much more handsome it makes me look. I’m bummed!
Bob Johnson the living, breathing person no longer exists! That’s right. I have been reduced to nothing but a bunch of numbers - height, weight, blood pressure, oxygen %, heart rate, temperature, and a set of blood counts. Thankfully, none of the numbers is zero but some of them are going to get pretty close. I’m counting on heart not being one of them!
As most of you know, a bone marrow transplant is also a part of my recovery program. At present, the only person of interest(to use a police term) is my sister. She, of course, is willing to help in any way possible - but, according to the doctors, the odds are only 1 in 4 of a match. Strangely, if you have 4 or more siblings, the odds do go up somewhat that you will find a match - but no where near 100%. Should my sister not be a match, the next step is a bone marrow bank. The doctors say that with my ethnicity, there should be an excellent chance that a match will be found. Still, until a true match is found, there is an element of doubt.
To further assist in the hunt, one of my daughters is starting a bone marrow drive that is to occur on December 13th, at Hampshire Hills in Milford, NH. More details will become available as the particulars are ironed out. The process as I understand it to be is a simple one - all that is required is a mouth swab. The likelihood of anyone on that day being a direct match for me is very slim. But the chance that anyone who participates can help someone else is not slim and people helping people is what life is all about.
So, what’s the major activity of my day? Boredom! However, the doctor says that I should be extremely grateful that that is the case. And, you know, he is right! Because boredom means that things are going along fine. Of course, my wife Nancy is always at my side. She is up everyday before 5 and here by 7. She cannot continue to maintain this pace as it will ultimately wear her down. Life has to go on for the healthy. I keep telling her to take a day off now and then but she won’t hear of it. I think that she is in need of a hearing aid.
I want to thank Ann Foster for the wonderful dinner basket that she brought to the house and I want to thank all of my co-workers at Nortel for their thoughtful food basket gift - flowers and plants are verboten! I also want to thank all of you who have taken the time to send me cards and e-mail. This whole experience has been a very humbling one for me. I’m just an average guy who happened to contract a not-so-average ailment. I do not know the significance or purpose of this adventure. But I do know that I cannot possibly come out at the end without being changed in some way. How will that outcome affect my life and that of others I do not know. It’s in God’s hands and He works in mysterious ways……
As a final note, given the fact that I will more than likely become more tired as the week progresses, it is my thought that the best way to contact me is via this blog or my e-mail. This allows me the luxury to respond to you when I am at my best.
Thanks,
Bob
The battle is now joined. Last night at 10:00, the chemo therapy began. This begins the regimen of 7 days for the IV chemo drug and 3 days for the “push” chemo drug. The latter requires about 10-15 minutes of a nurses time to push it into your system. Sounds kinda gross but its really not. Then comes the real fun. With all that liquid being put into you - it has to come out. So you spend half the night urinating and, since you are now awake, the other half thinking. Believe me when I say that the former accomplishes something while the latter does not. Needless to say, I felt some level of fear and trepidation before it began as this whole process is new to me - the need for chemo therapy, unfortunately, only befalls other people - never on us.
At present, I feel fine. This is completely normal as it takes several days for the effects of the drugs to take over. At that time, with my cell counts being low, any of a number of things could happen. But since each of us is a unique individual, no one can predict how it will play out. The nurses say that it can run the gamut from only being tired to having to undergo an extensive battle to fight off some kind of ailment. I should also state that before the process began, I received an anti-nausea drug which appears to be working fine. I have eaten both breakfast and lunch today with no problems.
Now for a bit of good news. I was talking with one of my doctors this morning about my blood count numbers. To a large extent they are normal with a few obvious exceptions caused by the leukemia. I asked him if there was any significance to that and he stated that it implied that I had a “light” case of leukemia. I hope this is not like being a “little bit” pregnant. In any case, because of this situation, he felt that my chances of achieving a full recovery are enhanced. As I had mentioned before, since the rest of my body was in “perfect” health(who needs a gym?), the doctors have the luxury of not holding back in my treatment which, once again, increases my chances for a full recovery. All of this was music to my ears. It’s a tune that I want to hear but it is the only music that I will be listening to for quite a while. It brings home the fact that I do miss the enjoyment of singing in my church choir. I love the camaraderie and it has always served as a great way to put the cares of everyday life aside for a while and just do something for the sheer fun of it.
The rest of this entry is going to be a mixed bag of things that have happened since yesterday’s entry and things that I have neglected to mention. So let’s start with some of the mundane. I am not allowed to brush my teeth. Pretty skeevy, eh? However, they give me a pill to dissolve in my mouth 4 times a day and a mouthwash to swish around twice a day. Even better, I am not allowed to shower for the next 7 days. So, if any of you are so inclined to want to visit me - it would appear that the sooner the better would be a good approach to take. I am sure that next week, even I would not like to visit me. Also, on the advice of several people, I decided to get a buzz cut on Monday prior to my entering the hospital on Tuesday. Everyone tells me how much younger it makes me look - no one tells me how much more handsome it makes me look. I’m bummed!
Bob Johnson the living, breathing person no longer exists! That’s right. I have been reduced to nothing but a bunch of numbers - height, weight, blood pressure, oxygen %, heart rate, temperature, and a set of blood counts. Thankfully, none of the numbers is zero but some of them are going to get pretty close. I’m counting on heart not being one of them!
As most of you know, a bone marrow transplant is also a part of my recovery program. At present, the only person of interest(to use a police term) is my sister. She, of course, is willing to help in any way possible - but, according to the doctors, the odds are only 1 in 4 of a match. Strangely, if you have 4 or more siblings, the odds do go up somewhat that you will find a match - but no where near 100%. Should my sister not be a match, the next step is a bone marrow bank. The doctors say that with my ethnicity, there should be an excellent chance that a match will be found. Still, until a true match is found, there is an element of doubt.
To further assist in the hunt, one of my daughters is starting a bone marrow drive that is to occur on December 13th, at Hampshire Hills in Milford, NH. More details will become available as the particulars are ironed out. The process as I understand it to be is a simple one - all that is required is a mouth swab. The likelihood of anyone on that day being a direct match for me is very slim. But the chance that anyone who participates can help someone else is not slim and people helping people is what life is all about.
So, what’s the major activity of my day? Boredom! However, the doctor says that I should be extremely grateful that that is the case. And, you know, he is right! Because boredom means that things are going along fine. Of course, my wife Nancy is always at my side. She is up everyday before 5 and here by 7. She cannot continue to maintain this pace as it will ultimately wear her down. Life has to go on for the healthy. I keep telling her to take a day off now and then but she won’t hear of it. I think that she is in need of a hearing aid.
I want to thank Ann Foster for the wonderful dinner basket that she brought to the house and I want to thank all of my co-workers at Nortel for their thoughtful food basket gift - flowers and plants are verboten! I also want to thank all of you who have taken the time to send me cards and e-mail. This whole experience has been a very humbling one for me. I’m just an average guy who happened to contract a not-so-average ailment. I do not know the significance or purpose of this adventure. But I do know that I cannot possibly come out at the end without being changed in some way. How will that outcome affect my life and that of others I do not know. It’s in God’s hands and He works in mysterious ways……
As a final note, given the fact that I will more than likely become more tired as the week progresses, it is my thought that the best way to contact me is via this blog or my e-mail. This allows me the luxury to respond to you when I am at my best.
Thanks,
Bob
Subscribe to:
Posts (Atom)
