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
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
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