Well today is a milestone day and not because it’s Valentine’s Day.
Today marks the 100th entry to be posted to this blog AND I have also finished the last scheduled dose of chemo. Now that the bone marrow transplant is just around the corner, there are no more plans to have me ever take chemo again. Thank God!!
More importantly, with the chemo done, they will stop the saline fluid infusion tomorrow so that I won’t be making a half a dozen bathroom visits during the night and getting little or no sleep in the process! I was just about to ask for a third kidney to be transplanted as a possible solution to the problem!
As for the 100th entry, it seems like just about yesterday that I just began this little website as an additional way for me to help assist me back to full health once again. Ironically, just this coming Tuesday, a much more important 100 days gets underway which we will count down together. Before you know it - it, too, will be over.
Having been on this floor in the hospital back in November, I have had the good fortune to renew old acquaintances with some of the nurses here. She, obviously, was most interested in my progress and, when she found out that I was doing so well, she immediately homed in on the power of prayer and how well it works. I am so grateful to all of you for supplying me with that essential need.
I mentioned yesterday that they intended to reduce the number of pills that I took during the day and they did so! Instead of over 30, the number was trimmed to 25 – they are all heart here! I don’t think that I have taken a total of 50 pills in the last ten years.
I have not commented on my room this time because there really is not too much to say about it. It, obviously, used to be a double room which they have converted to a single so there is plenty of room. However, unlike my prior stay in November, I do not have a refrigerator. But with only an 8 day stay, it really isn’t necessary. Most importantly, the heat seems to work OK. It does fluctuate from a little cool to somewhat warm but the temperature swings are not nearly as bad as the first room that I had here so they are bearable.
Again, I am doing very well. About the only thing that has happened to me is that my appetite has diminished somewhat – which is a good thing. Having dined on the Stouffer’s dinners the past few days along with desserts – I have actually gained a little weight since I arrived. The doctors are overjoyed with this – but I have to control myself so that I can still fit into that fashionable hospital clothing!
The next 2 days are designated as being days of “rest” for me. However, given that I have done nothing in the days leading up to that point, I will have to ask the doctors what their definition of “rest” really is. On second thought, maybe, I don’t want to know!
So, another uneventful day comes to a close for which I want to thank you all…
Bob
FRIDAY February 13, 2009 10:20 PM
“Everything is perfect!” “You look fantastic!”
These are just two of the comments from the doctors this morning.
The first comment is probably the more important because it refers to my blood counts and test results. However, the second comment probably resonated more because it was made by a young female doctor and it immediately appealed to my sense of vanity – if I ever had a sense of vanity. A hint to all you guys - it’s gotta be the buzz cut look!
So our stretch of being in good health continues to march on. And thank God for Stouffers – because I can actually eat the food and they don’t bug me about my appetite.
Today started the immunosuppressant treatment. So, this morning a nurse arrives with more pills than I have ever seen in one place before and says that I had to take all of them. As I said before, I take no medications for anything and when they show up with 19 pills – it’s rather daunting. Before the day was over, they added on another 12.
As I mentioned yesterday, the nutritionist came by today and basically went over my 100 day diet. There were no real surprises – everything must be well-cooked. So rare steaks, beef roasts, and hamburgers are out of the question. Even medium is not acceptable. Restaurants and takeout are not allowed and, of course, no alcohol. Just wait until day 101! Party time!
However, there are to be NO SALAD BARS and NO BUFFETS for ONE FULL YEAR.
Well it’s now three days down and one more to go on the chemo. And this should end my involvement with chemotherapy.
So, I continue to sit here reading the newspaper, watching television, and watching movies on my laptop. And the doctors continue to be amazed!
Thank you all, again, for your thoughts, prayers, and support because it seems as though a protective mantle has been placed around me - for which I am extremely grateful.
Bob
These are just two of the comments from the doctors this morning.
The first comment is probably the more important because it refers to my blood counts and test results. However, the second comment probably resonated more because it was made by a young female doctor and it immediately appealed to my sense of vanity – if I ever had a sense of vanity. A hint to all you guys - it’s gotta be the buzz cut look!
So our stretch of being in good health continues to march on. And thank God for Stouffers – because I can actually eat the food and they don’t bug me about my appetite.
Today started the immunosuppressant treatment. So, this morning a nurse arrives with more pills than I have ever seen in one place before and says that I had to take all of them. As I said before, I take no medications for anything and when they show up with 19 pills – it’s rather daunting. Before the day was over, they added on another 12.
As I mentioned yesterday, the nutritionist came by today and basically went over my 100 day diet. There were no real surprises – everything must be well-cooked. So rare steaks, beef roasts, and hamburgers are out of the question. Even medium is not acceptable. Restaurants and takeout are not allowed and, of course, no alcohol. Just wait until day 101! Party time!
However, there are to be NO SALAD BARS and NO BUFFETS for ONE FULL YEAR.
Well it’s now three days down and one more to go on the chemo. And this should end my involvement with chemotherapy.
So, I continue to sit here reading the newspaper, watching television, and watching movies on my laptop. And the doctors continue to be amazed!
Thank you all, again, for your thoughts, prayers, and support because it seems as though a protective mantle has been placed around me - for which I am extremely grateful.
Bob
February 12, 2009 10:10 PM
Happy 200th to Abraham Lincoln and Charles Darwin!
It may just be coincidence, but late last night, here on this floor – a few doors down from me, a 61 year old man got a bone marrow transplant from a woman who was known to live quite far from here. Could it be Skoja’s stem cells? One can only guess at this point in time, but quite a few pieces of the puzzle seem to fit together.
This information we got from the social worker who stopped by during the day. She did not know any more than what I related above.
As for me, day 2 of the chemo is now complete and there have been no side effects up now. In fact one of the nurses was surprised that I had not made use of the bed during the day – what for!!! So the chemo does not get to me, but they insist on filling you up with saline solution on a 24/7 basis “to clean out your kidneys”. I’ll say! You spend half the night answering bathroom calls and then they ask you in the morning if you slept well!
As I said yesterday, the pills just keep on coming. I must have had a dozen or so today and the nurse tonight said that I would start on some new ones tomorrow in preparation for the transplant. By the way, when the doctors came in this morning, they said that the transplant date had been moved to the 17th without providing any reason. They are still looking for me to go home on the 18th. This means that there will be 2 days of rest – Sunday and Monday instead of only 1. If, with the doctors’ visits and the chemo, each day is currently very boring – Sunday and Monday are going to seem like eternities. However, as was said before, uneventful is what everyone is striving for.
Now back to my favorite subject – the wonderful cafeteria downstairs. It is always a gamble when you order anything – will you or won’t you get what you ordered and, if you do, will it be edible? I’ve kinda licked the edible part by ordering the Stouffers frozen dinners as I said yesterday.
However, I ordered scrambled eggs with bacon for breakfast and got scrambled eggs and sausages. I had intentionally avoided ordering sausages because when I did so before, they were so overcooked that you could have used them for dowels. However, I must admit that this time the proved to be edible. For lunch I had asked for 2 bags of potato chips. I received a bag of cheese flavored nacho chips and a bag of corn chips instead. This, of course, comes after I repeat the order because I have been burnt so many times in the past. Businesses routinely record phone calls - maybe they ought to record our food orders here at the hospital!
Tomorrow we have an afternoon meeting with the nutritionist to go over my “100 day diet”.
I’m sure that will be interesting….
Bob
It may just be coincidence, but late last night, here on this floor – a few doors down from me, a 61 year old man got a bone marrow transplant from a woman who was known to live quite far from here. Could it be Skoja’s stem cells? One can only guess at this point in time, but quite a few pieces of the puzzle seem to fit together.
This information we got from the social worker who stopped by during the day. She did not know any more than what I related above.
As for me, day 2 of the chemo is now complete and there have been no side effects up now. In fact one of the nurses was surprised that I had not made use of the bed during the day – what for!!! So the chemo does not get to me, but they insist on filling you up with saline solution on a 24/7 basis “to clean out your kidneys”. I’ll say! You spend half the night answering bathroom calls and then they ask you in the morning if you slept well!
As I said yesterday, the pills just keep on coming. I must have had a dozen or so today and the nurse tonight said that I would start on some new ones tomorrow in preparation for the transplant. By the way, when the doctors came in this morning, they said that the transplant date had been moved to the 17th without providing any reason. They are still looking for me to go home on the 18th. This means that there will be 2 days of rest – Sunday and Monday instead of only 1. If, with the doctors’ visits and the chemo, each day is currently very boring – Sunday and Monday are going to seem like eternities. However, as was said before, uneventful is what everyone is striving for.
Now back to my favorite subject – the wonderful cafeteria downstairs. It is always a gamble when you order anything – will you or won’t you get what you ordered and, if you do, will it be edible? I’ve kinda licked the edible part by ordering the Stouffers frozen dinners as I said yesterday.
However, I ordered scrambled eggs with bacon for breakfast and got scrambled eggs and sausages. I had intentionally avoided ordering sausages because when I did so before, they were so overcooked that you could have used them for dowels. However, I must admit that this time the proved to be edible. For lunch I had asked for 2 bags of potato chips. I received a bag of cheese flavored nacho chips and a bag of corn chips instead. This, of course, comes after I repeat the order because I have been burnt so many times in the past. Businesses routinely record phone calls - maybe they ought to record our food orders here at the hospital!
Tomorrow we have an afternoon meeting with the nutritionist to go over my “100 day diet”.
I’m sure that will be interesting….
Bob
February 11, 2009 10:00 PM
As they say, the best laid plans of mice and men…
Having been directed to call the hospital at noon today to get my admission time, our phone rang at 8 this morning wondering where we were! It seems that someone was supposed to have called us yesterday and have me come in then. The whole process had been pulled in a day and Monday is now the projected date for the transplant to occur. Funny how that works, because my wife and I have been believing that to be the case when in fact the transplant was originally set for Tuesday.
The change in plans cost me my last visit to a restaurant to have breakfast. I was kind of looking forward to it – but it wasn’t meant to be. However, not getting the phone call yesterday allowed us to blindly go forward with our dinner plans for last night which would, otherwise, have been aborted.
However, as with hospitals, it’s the usual tale of hurry up and wait. We rushed to Boston to get here - assuming that they wanted to get the process underway immediately. I make it to the room before noontime and then wait until 5:30 before they actually began the day 1 chemo. Admittedly, some doctors stopped by in the meantime but it was mostly to introduce themselves to me and my wife. However, they did admit that they had heard “an awful lot about me” – whatever that means! Since I am back in the same pod as I was last November, it was also a lot of fun touching base with the nursing staff again.
Without a doubt, knowing the hospital routine makes it a lot easier to assimilate myself back into this environment. Mouth care, ordering food, when the vitals are taken, knowing what to bring from home, etc. have made the transition from home to here for the third time a rather smooth operation. I am counting on there NOT being a fourth time.
Still a few other details to mention. Now that I am in bone marrow transplant (BMT) mode, all guests must wear masks and gloves. My wife is finding it somewhat difficult because it gets hot in the mask and the mask hurts your ears after a while. You are not allowed to bring any personal belongings into the room – coats, hats, pocket books, etc. The few personal items that I brought with me had to be cleaned before they could be brought into the room. I am not allowed to leave the room unless it is specifically for medical reasons. So visiting me over these 8 days is not going to be a very pleasant experience for any of you. Strangely, all bets are off when I go home – but that’s another story.
Medicationwise, they have already started me on antibiotics and have warned me that when I leave next week, I will be taking anywhere from 12 to 13 medications a day. These they hope to winnow down rather quickly over the first month to a more manageable number. Over the next few days we’ll get lessons in what each medication does and how to administer it. This is a HUGE change for someone who currently takes no medications at all.
Now for the most important question of the next 8 days – how will I survive the hospital food this time when I am not allowed to have food brought in from the outside? It turns out that it is a lot easier than I ever thought! Thank God! They gave me a BMT menu today from which to order. It differs from the regular menu that I had twice before because it is devoid of salads, fresh fruit, any items with seeds, etc. However, it has one very important addition - a section containing a variety of Stouffers Frozen Entrees! So far, I have survived by having one of these for lunch and another one for dinner. I have to admit that the hospital cafeteria does do a great job at warming up frozen food and the Stouffers food is much more palatable than anything that the hospital has ever produced.
So, as I write this, I have just completed the day 1 chemo regimen and it’s been a case of so far so good. Now that I am here, some of the anxiety and concern has seemed to diminish as the pace of activities has picked up and I am now actually heading toward the transplant date. Rumor has it, by the way, that my donor is on the east coast and that the marrow blood type is A positive which is my blood type as well. We’ll get confirmation over the next few days.
A rather lengthy entry for the day but we are back into full activity mode and there is much going on.
Thanks for bearing with me…
Bob
Having been directed to call the hospital at noon today to get my admission time, our phone rang at 8 this morning wondering where we were! It seems that someone was supposed to have called us yesterday and have me come in then. The whole process had been pulled in a day and Monday is now the projected date for the transplant to occur. Funny how that works, because my wife and I have been believing that to be the case when in fact the transplant was originally set for Tuesday.
The change in plans cost me my last visit to a restaurant to have breakfast. I was kind of looking forward to it – but it wasn’t meant to be. However, not getting the phone call yesterday allowed us to blindly go forward with our dinner plans for last night which would, otherwise, have been aborted.
However, as with hospitals, it’s the usual tale of hurry up and wait. We rushed to Boston to get here - assuming that they wanted to get the process underway immediately. I make it to the room before noontime and then wait until 5:30 before they actually began the day 1 chemo. Admittedly, some doctors stopped by in the meantime but it was mostly to introduce themselves to me and my wife. However, they did admit that they had heard “an awful lot about me” – whatever that means! Since I am back in the same pod as I was last November, it was also a lot of fun touching base with the nursing staff again.
Without a doubt, knowing the hospital routine makes it a lot easier to assimilate myself back into this environment. Mouth care, ordering food, when the vitals are taken, knowing what to bring from home, etc. have made the transition from home to here for the third time a rather smooth operation. I am counting on there NOT being a fourth time.
Still a few other details to mention. Now that I am in bone marrow transplant (BMT) mode, all guests must wear masks and gloves. My wife is finding it somewhat difficult because it gets hot in the mask and the mask hurts your ears after a while. You are not allowed to bring any personal belongings into the room – coats, hats, pocket books, etc. The few personal items that I brought with me had to be cleaned before they could be brought into the room. I am not allowed to leave the room unless it is specifically for medical reasons. So visiting me over these 8 days is not going to be a very pleasant experience for any of you. Strangely, all bets are off when I go home – but that’s another story.
Medicationwise, they have already started me on antibiotics and have warned me that when I leave next week, I will be taking anywhere from 12 to 13 medications a day. These they hope to winnow down rather quickly over the first month to a more manageable number. Over the next few days we’ll get lessons in what each medication does and how to administer it. This is a HUGE change for someone who currently takes no medications at all.
Now for the most important question of the next 8 days – how will I survive the hospital food this time when I am not allowed to have food brought in from the outside? It turns out that it is a lot easier than I ever thought! Thank God! They gave me a BMT menu today from which to order. It differs from the regular menu that I had twice before because it is devoid of salads, fresh fruit, any items with seeds, etc. However, it has one very important addition - a section containing a variety of Stouffers Frozen Entrees! So far, I have survived by having one of these for lunch and another one for dinner. I have to admit that the hospital cafeteria does do a great job at warming up frozen food and the Stouffers food is much more palatable than anything that the hospital has ever produced.
So, as I write this, I have just completed the day 1 chemo regimen and it’s been a case of so far so good. Now that I am here, some of the anxiety and concern has seemed to diminish as the pace of activities has picked up and I am now actually heading toward the transplant date. Rumor has it, by the way, that my donor is on the east coast and that the marrow blood type is A positive which is my blood type as well. We’ll get confirmation over the next few days.
A rather lengthy entry for the day but we are back into full activity mode and there is much going on.
Thanks for bearing with me…
Bob
February 10, 2009 11:55 PM
That's it. My last day at home as me has been completed. When I return next Thursday, I will have the new bone marrow and the DNA of my blood and my blood type will become that of my donor. Kinda funky isn't it because the rest of me will still be me.
My daughter half kiddingly said that the 8 days that I will now spend in the hospital can be likened to the 8 days of Hanukkah. However, when you think about it, there really is a connection here. I am not Jewish, but I know that Hanukkah is the festival of lights commemorating a situation whereby there was only enough oil to light a lamp for one day and yet, amazingly, it stayed lit for 8 days. In my case, one small IV bag that only contains enough bone marrow to replace my marrow once will then give me a lifetime of days thereafter - hopefully many more than 8!
So tomorrow, I'll go out for breakfast(my last restaurant visit for a year), call the hospital at noon to determine when I need to be there, and then go to be admitted. Thursday the process starts and there will be much more news to report as the action picks up.
Stay tuned....
Bob
My daughter half kiddingly said that the 8 days that I will now spend in the hospital can be likened to the 8 days of Hanukkah. However, when you think about it, there really is a connection here. I am not Jewish, but I know that Hanukkah is the festival of lights commemorating a situation whereby there was only enough oil to light a lamp for one day and yet, amazingly, it stayed lit for 8 days. In my case, one small IV bag that only contains enough bone marrow to replace my marrow once will then give me a lifetime of days thereafter - hopefully many more than 8!
So tomorrow, I'll go out for breakfast(my last restaurant visit for a year), call the hospital at noon to determine when I need to be there, and then go to be admitted. Thursday the process starts and there will be much more news to report as the action picks up.
Stay tuned....
Bob
February 9, 2009 10:45 PM
Not much news today.
However, we looked in detail at the hospital schedule that has been laid out for me. Wednesday is admittance day(nothing else happens), Thursday througn Sunday are the 4 chemo days(they say it's easy stuff and should be "no problem"), Monday is the day of rest(truthfully, you don't do much any of the other days either), Tuesday is the transplant day, Wednesday starts the medication process, and Thursday I get to go home. Rather complete and compact.
Am I ready? I guess I am as ready as I am ever going to be. Let's just get the show on the road as they say. It's been nice to sit at home for the past 2 and a half weeks but it hasn't accomplished much other than to know that I am still in full remission. So we might as well start moving again and make some progress.
That's about it....
Bob
However, we looked in detail at the hospital schedule that has been laid out for me. Wednesday is admittance day(nothing else happens), Thursday througn Sunday are the 4 chemo days(they say it's easy stuff and should be "no problem"), Monday is the day of rest(truthfully, you don't do much any of the other days either), Tuesday is the transplant day, Wednesday starts the medication process, and Thursday I get to go home. Rather complete and compact.
Am I ready? I guess I am as ready as I am ever going to be. Let's just get the show on the road as they say. It's been nice to sit at home for the past 2 and a half weeks but it hasn't accomplished much other than to know that I am still in full remission. So we might as well start moving again and make some progress.
That's about it....
Bob
February 8, 2009 11:55 PM
Only 3 more days to go.
I have to admit that I get a little anxious as the day draws near. As usual, it's a step into an unknown that I cannot relate to anything that I have experienced in the past. I do not wish to go out on the web and see how others have made out in this process because the results will run the gamut from the highly successful to those that failed completely and I have no desire to see what my odds might be. Each person is unique and I choose to run with that thought and take my situation one day at a time. But, obviously, I have no choice here - it's a step that I have to take.
The support system that you have all provided me will definitely help me get through this. So many of us are convinced of the power of prayer and my journey has been a landmark in that area. So much so that even the doctors are amazed. So I am taking all of that with me on Wednesday.
Unlike "Skoja", there is no pre-preparation for me before I go on Wednesday. My first 5 days in the hospital will serve as the prelude to the actual transplant on the 16th. My first goal is to look forward to coming home on the 18th and, then, the lengthy recovery period thereafter.
Each small step gets us closer to the end....
Bob
I have to admit that I get a little anxious as the day draws near. As usual, it's a step into an unknown that I cannot relate to anything that I have experienced in the past. I do not wish to go out on the web and see how others have made out in this process because the results will run the gamut from the highly successful to those that failed completely and I have no desire to see what my odds might be. Each person is unique and I choose to run with that thought and take my situation one day at a time. But, obviously, I have no choice here - it's a step that I have to take.
The support system that you have all provided me will definitely help me get through this. So many of us are convinced of the power of prayer and my journey has been a landmark in that area. So much so that even the doctors are amazed. So I am taking all of that with me on Wednesday.
Unlike "Skoja", there is no pre-preparation for me before I go on Wednesday. My first 5 days in the hospital will serve as the prelude to the actual transplant on the 16th. My first goal is to look forward to coming home on the 18th and, then, the lengthy recovery period thereafter.
Each small step gets us closer to the end....
Bob
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