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
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
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