A quiet day. Just marking time until Monday when we have to hit the clinic again.
Still no sign of any problems. But it is still early for some things to happen so we're not out of the woods yet.
A woman came by from our "new" home care company in order to get a baseline on me and to get some forms filled out. It seems that the insurance company will cover the cost of my home supplies and any possible home care that I will need with a different company for the bone marrow transplant recovery phase than for the chemo phase. Why we need a different company I don't know, but it certainly is not worth my paying the first company out of my pocket for any care that I might need. As it turns out, I'll probably never need to avail myself of their services as my wife flushes my catheter every day and they change the dressing for at Dana-Farber once a week.
The Hickman catheter is literally my lifeline as everything is infused and drawn through it without the need to stick me all the time. The nurses love it and so do I!
That is one thing that you find out through this whole experience - the health insurance company controls everything! This last 8 day visit that I just completed did not have to be 8 days. All the preparation for the transplant could have been done on an outpatient basis. But, the hospital said, the insurance doesn't know how to handle that - so they admit me so that I will be covered. No wonder health care costs are so high - such a waste!
Other than my venting at my health insurance company, I feel fine. This really makes it hard for me in some ways because I feel that I could be doing more than simply hanging around the house. But, I certainly do not want to rock the boat - so I'll abide by the doctors wishes and curtail my activities. I'm not complaining, mind you. I am just relaying my feelings at this point.
On to Sunday and, as I said before, I miss being able to go to church.
But everything in its time...
Bob
Bob
February 20, 2009 11:45 PM 97 days to go
The visit to the clinic at Dana-Farber went better than I thought for I did not have to undergo any infusions other than the scheduled methotrexate chemo which is about a 15 minute process.
It's always nice to get feedback from "those in the know" and my nurse at the clinic said that I was doing extremely well - commenting that for many others in my position, it is a huge effort just to get out of bed in the morning and then get dressed. Lack of energy is not a problem for me - in fact, I have NO problems. It's funny, though, this nurse and I have bonded somewhat (because we are both New Hampshire residents) and when she sees that I am in the clinic, she goes out of her way to provide with good service. This is a huge help because the MO for the clinic is to "hurry up and wait" and it can take your forever to get something done that could have been done in munutes. She greatly reduces the wait times and it is much appreciated.
We had an appointment with the nurse practitioner who went over my medicines and talked about my counts. Everything is great! And, of course, they go through the litany of side effects that I could possibly be experiencing to which I always respond in the negative. She did say that come Monday, I would begin to become neutropenic and that it would last for about a week. This is the period that my counts fall to their lowest before they start their return to normal levels. Hopefully, this will be the third, and last, time that I have to experience this. She also commented that my having the same blood type as my donor was a big help at this time because it lessens the likelihood that I will suffer from a number of side effects that are typical at this juncture.
We saw the woman to whom I e-mailed my donor letter and she stated that she forwarded it on after reading it and being overcome with emotion. I didn't write it with that goal in mind, but, as you can imagine, this is most certainly an emotional situation. I can't publish the letter here and risk the chance that my donor somehow comes across this blog.
So, it's back to the clinic on Monday with a followup on Wednesday or Friday and then just weekly Wednesday appointments after that.
When you see everything come together so well for me, it is hard to believe that the hand of God is not touching me. A bone marrow donor was immediately found, the donor was perfect, our blood types are the same, I have this nurse/angel in the infusion lab, every bone marrow biopsy (other than the initial one) has showed no cancer cells, I have suffered minimal side effects throughout this time, the list goes on...
So keep those prayers coming, you have all done so well. And I am sure that it is rewarding to each of you to see that your prayers have been answered.
Til the next time...
Bob
It's always nice to get feedback from "those in the know" and my nurse at the clinic said that I was doing extremely well - commenting that for many others in my position, it is a huge effort just to get out of bed in the morning and then get dressed. Lack of energy is not a problem for me - in fact, I have NO problems. It's funny, though, this nurse and I have bonded somewhat (because we are both New Hampshire residents) and when she sees that I am in the clinic, she goes out of her way to provide with good service. This is a huge help because the MO for the clinic is to "hurry up and wait" and it can take your forever to get something done that could have been done in munutes. She greatly reduces the wait times and it is much appreciated.
We had an appointment with the nurse practitioner who went over my medicines and talked about my counts. Everything is great! And, of course, they go through the litany of side effects that I could possibly be experiencing to which I always respond in the negative. She did say that come Monday, I would begin to become neutropenic and that it would last for about a week. This is the period that my counts fall to their lowest before they start their return to normal levels. Hopefully, this will be the third, and last, time that I have to experience this. She also commented that my having the same blood type as my donor was a big help at this time because it lessens the likelihood that I will suffer from a number of side effects that are typical at this juncture.
We saw the woman to whom I e-mailed my donor letter and she stated that she forwarded it on after reading it and being overcome with emotion. I didn't write it with that goal in mind, but, as you can imagine, this is most certainly an emotional situation. I can't publish the letter here and risk the chance that my donor somehow comes across this blog.
So, it's back to the clinic on Monday with a followup on Wednesday or Friday and then just weekly Wednesday appointments after that.
When you see everything come together so well for me, it is hard to believe that the hand of God is not touching me. A bone marrow donor was immediately found, the donor was perfect, our blood types are the same, I have this nurse/angel in the infusion lab, every bone marrow biopsy (other than the initial one) has showed no cancer cells, I have suffered minimal side effects throughout this time, the list goes on...
So keep those prayers coming, you have all done so well. And I am sure that it is rewarding to each of you to see that your prayers have been answered.
Til the next time...
Bob
February 19, 2009 10:00 PM 98 days to go
Water, water everywhere - but not a drop to drink is far from the watchword in this household. At each of the 5 times that I took my drugs during the day, I drank at least 10 oz. of water. Coupled with the 16 oz. that I drank at lunch and at dinner - I think that I am getting the required 60+ oz. under my belly - or should I say - through my kidneys?
This post is a little earlier because tomorrow we have to be at the Dana-Farber center in Boston by 7:00. So we'll be up around 5, I guess. Lot's of fun - but it's still better than being in the hospital.
So, how did my day 1 at home go? I spent most of the day alone as my wife had to be out of the house But, I did do 2 things. I put together a spreadsheet to keep track of all the drugs that I take, when I take them, and what the requirements are. Being on the computer, it will be easy to update as the drugs and/or doses and/or times change. The second is that I crafted a letter to my donor and forwarded it on to Dana-Farber in the hopes that they will pass it on to the donor.
Also, I took 2 deliveries of medical supplies (boy, it sounds like I'm in some foreign location awaiting the supplies to be dropped as part of some kind of airlift operation); read the newspaper; watched some TV; and surfed the web.
Whoever would have thought that I would ever be writing such a letter? With everything else being in excellent shape, I would never have guessed that I would ever be in a position like this.
But life deals us strange cards at times and we have to play with the hand that we've been dealt. Fortunately, I have enough behind me that I can continue to play with an excellent chance of winning.
I feel fine. This is especially amazing to me as I keep hearing stories of people who were very, very ill after getting their transplant. Not the case here. In fact, we had veal parmesan for dinner so I don't think that I am contending with nausea in any way.
I think that tomorrow will be a big day because it will offer me the first time to actually see how my counts are doing - when your are admitted, they just tell you that things are fine. I want to know what fine really means!
So, tomorrow night I'll let you know what I know...
Bob
This post is a little earlier because tomorrow we have to be at the Dana-Farber center in Boston by 7:00. So we'll be up around 5, I guess. Lot's of fun - but it's still better than being in the hospital.
So, how did my day 1 at home go? I spent most of the day alone as my wife had to be out of the house But, I did do 2 things. I put together a spreadsheet to keep track of all the drugs that I take, when I take them, and what the requirements are. Being on the computer, it will be easy to update as the drugs and/or doses and/or times change. The second is that I crafted a letter to my donor and forwarded it on to Dana-Farber in the hopes that they will pass it on to the donor.
Also, I took 2 deliveries of medical supplies (boy, it sounds like I'm in some foreign location awaiting the supplies to be dropped as part of some kind of airlift operation); read the newspaper; watched some TV; and surfed the web.
Whoever would have thought that I would ever be writing such a letter? With everything else being in excellent shape, I would never have guessed that I would ever be in a position like this.
But life deals us strange cards at times and we have to play with the hand that we've been dealt. Fortunately, I have enough behind me that I can continue to play with an excellent chance of winning.
I feel fine. This is especially amazing to me as I keep hearing stories of people who were very, very ill after getting their transplant. Not the case here. In fact, we had veal parmesan for dinner so I don't think that I am contending with nausea in any way.
I think that tomorrow will be a big day because it will offer me the first time to actually see how my counts are doing - when your are admitted, they just tell you that things are fine. I want to know what fine really means!
So, tomorrow night I'll let you know what I know...
Bob
February 18, 2009 11:05 PM 99 days to go
Home at last!
We had to stay at the hospital today until about 6 o'clock to complete all of the medication for the day before I could be released. More importantly, we had to get my medications for home, to learn what they all do and to understand when and how to take them. Some you do once, some twice, some three times, some even four times a day. Some you take with food, some you don't, and some you must take with a lot of water while for others it makes no difference. And you take then all different ways - caplets, pills, liquid, and even as a shot(a la insulin). They consist of antibiotics, vitamins, oral health care, and immuno-suppressants. Just keeping track of this stuff is to be a full time job. So be it! What else do I have to do anyway!
Coming home is always nice even though I will be confined here for quite a while. Over the next couple of weeks while my counts go down as before and then recover - I am looking at being somewhat of a hermit restricting visits to family members until we are sure as to the success of the transplant and the doctors say it is OK. After that, any visits can be done just as before.
How do I feel? Well, I don't think that I have acquired the ability to play the piano, to be a stand-up comic, to now have rhythm, to be a serial killer, or to do anything different than before. I feel exactly as I did before I went into the hospital including the fact that, once again, I dodged all of the side effects inherent in the 8 day bone marrow process. The doctors were again pleased and amazed at how well I have held up.
The big issue is to drink lots of water every day - at least 60 oz. Otherwise, some of the immuno-supressants could start to crystallize in my kidneys causing a lot of unnecessary side effects that could damage them. To come this far and then blow it for that reason doesn't make much sense to me so I have chosen the way of the camel!
I didn't mention it yesterday, but the timing of the transplant was within minutes of the time of day when I was born. Call it irony, coincidence, or whatever - but I cannot help but think that the hand of God had something to do with it and it further lent an air of solemnity to the transplant moment.
So off we go back to the clinic on Friday and Monday for a truly mini-dose of chemo and to see how my counts are doing in order to properly adjust the levels of some of my medications to respond to how my body is acting. After that, we aren't sure what the shedule of visits will be.
So, as we now formally enter the recovery phase, please keep me in your thoughts and prayers as there are still battles to be fought and won. We know that no matter the fight, God is always at our side.
What a comfort...
Bob
We had to stay at the hospital today until about 6 o'clock to complete all of the medication for the day before I could be released. More importantly, we had to get my medications for home, to learn what they all do and to understand when and how to take them. Some you do once, some twice, some three times, some even four times a day. Some you take with food, some you don't, and some you must take with a lot of water while for others it makes no difference. And you take then all different ways - caplets, pills, liquid, and even as a shot(a la insulin). They consist of antibiotics, vitamins, oral health care, and immuno-suppressants. Just keeping track of this stuff is to be a full time job. So be it! What else do I have to do anyway!
Coming home is always nice even though I will be confined here for quite a while. Over the next couple of weeks while my counts go down as before and then recover - I am looking at being somewhat of a hermit restricting visits to family members until we are sure as to the success of the transplant and the doctors say it is OK. After that, any visits can be done just as before.
How do I feel? Well, I don't think that I have acquired the ability to play the piano, to be a stand-up comic, to now have rhythm, to be a serial killer, or to do anything different than before. I feel exactly as I did before I went into the hospital including the fact that, once again, I dodged all of the side effects inherent in the 8 day bone marrow process. The doctors were again pleased and amazed at how well I have held up.
The big issue is to drink lots of water every day - at least 60 oz. Otherwise, some of the immuno-supressants could start to crystallize in my kidneys causing a lot of unnecessary side effects that could damage them. To come this far and then blow it for that reason doesn't make much sense to me so I have chosen the way of the camel!
I didn't mention it yesterday, but the timing of the transplant was within minutes of the time of day when I was born. Call it irony, coincidence, or whatever - but I cannot help but think that the hand of God had something to do with it and it further lent an air of solemnity to the transplant moment.
So off we go back to the clinic on Friday and Monday for a truly mini-dose of chemo and to see how my counts are doing in order to properly adjust the levels of some of my medications to respond to how my body is acting. After that, we aren't sure what the shedule of visits will be.
So, as we now formally enter the recovery phase, please keep me in your thoughts and prayers as there are still battles to be fought and won. We know that no matter the fight, God is always at our side.
What a comfort...
Bob
February 17, 2009 9:40 PM 100 days to go!
Born again!!!!
Now the countdown begins…
After an all day wait, a little after 5:00, the bone marrow arrived looking basically like a bag of blood – just a little deeper red. A half hour later, the infusion was over. During that time, the nurse monitors your temperature, your heart, and takes your blood pressure. Rarely does anything of consequence happen during the infusion and I was no exception. So everything went like clockwork once again. My wife took a picture at the moment that the infusion began - for posterity sake I guess.
Truth be told, I was probably more relaxed today than I had been during the last few days. I guess that it might have been that the wait was finally over.
Once again, all my vital signs are exactly where they should be. I feel no different after the transplant than I did before which is what everyone is looking for. In fact, my appetite is even starting to come back. A young doctor came in this evening and asked if I was suffering any nausea while I was merrily eating lasagna! What do they teach them in medical school these days?
So tomorrow, after I receive a quick 15 minute infusion of chemo at the 24 hour mark from the start of today’s infusion – I get to go home. After 8 days, it goes without saying that I am looking forward to it.
Further grasping on to any good news that I can, a friend of ours discussed my status with the father of her son-in-law who happens to be an oncologist. His thought was that I had a great chance for a full recovery. It guarantees nothing, I know, but it’s nice to hear that someone with an intimate knowledge of cancer exhibits an optimistic outlook.
So I have an undying (what a choice of words!) gratitude toward the individual who literally gave of themselves in order to help another human being that they don’t even know!
As my sister-in-law says, it’s in God’s hands now. That’s where all of you come in...
Bob
Now the countdown begins…
After an all day wait, a little after 5:00, the bone marrow arrived looking basically like a bag of blood – just a little deeper red. A half hour later, the infusion was over. During that time, the nurse monitors your temperature, your heart, and takes your blood pressure. Rarely does anything of consequence happen during the infusion and I was no exception. So everything went like clockwork once again. My wife took a picture at the moment that the infusion began - for posterity sake I guess.
Truth be told, I was probably more relaxed today than I had been during the last few days. I guess that it might have been that the wait was finally over.
Once again, all my vital signs are exactly where they should be. I feel no different after the transplant than I did before which is what everyone is looking for. In fact, my appetite is even starting to come back. A young doctor came in this evening and asked if I was suffering any nausea while I was merrily eating lasagna! What do they teach them in medical school these days?
So tomorrow, after I receive a quick 15 minute infusion of chemo at the 24 hour mark from the start of today’s infusion – I get to go home. After 8 days, it goes without saying that I am looking forward to it.
Further grasping on to any good news that I can, a friend of ours discussed my status with the father of her son-in-law who happens to be an oncologist. His thought was that I had a great chance for a full recovery. It guarantees nothing, I know, but it’s nice to hear that someone with an intimate knowledge of cancer exhibits an optimistic outlook.
So I have an undying (what a choice of words!) gratitude toward the individual who literally gave of themselves in order to help another human being that they don’t even know!
As my sister-in-law says, it’s in God’s hands now. That’s where all of you come in...
Bob
February 16, 2009 10:20 PM
The waiting is over. Tomorrow the transplant occurs. Everything up to now has been the preliminaries leading up to this main show.
Am I nervous? Of course I am. I guess as evidence of that, my heart rate has been higher today than at any other time since I arrived. Not to worry, it’s not dangerously high by any means. But, obviously, the next (and last) step of my journey differs greatly from everything leading up to this moment and the unknown, for most of us, is most certainly accompanied with some level of anxiety. However, it is a step that I have to take and I have full faith that God is at my side as that step is made.
The transplant will occur some time in the afternoon but no one knows exactly when -because the delivery of the marrow is subject to the scheduling of the donor’s doctor.
I know that there will be no possible negative reaction on the part of my body tomorrow or even in the immediate days and weeks to follow. The real deal, so to speak, will not occur for at least 2 months when Graft Versus Host Disease (GVHD) could possibly start. As further testimony to this is the fact that I will go home within a day or so of the transplant and the doctor is only requiring 1 visit a week to the Dana-Farber Center in the weeks that follow.
As I mentioned yesterday, I did not know the impact of the fact that the donor’s blood type coincides with mine. The doctor said that it is definitely a plus because the transplant can take hold even quicker than otherwise. Though not a high priority criteria when selecting a donor, the doctors strive to get a blood type match, if at all possible. Again, thank you God that the most perfect of donors has been found.
Everything is still in perfect order regarding my condition, so let the show begin, I am ready….
Bob
Am I nervous? Of course I am. I guess as evidence of that, my heart rate has been higher today than at any other time since I arrived. Not to worry, it’s not dangerously high by any means. But, obviously, the next (and last) step of my journey differs greatly from everything leading up to this moment and the unknown, for most of us, is most certainly accompanied with some level of anxiety. However, it is a step that I have to take and I have full faith that God is at my side as that step is made.
The transplant will occur some time in the afternoon but no one knows exactly when -because the delivery of the marrow is subject to the scheduling of the donor’s doctor.
I know that there will be no possible negative reaction on the part of my body tomorrow or even in the immediate days and weeks to follow. The real deal, so to speak, will not occur for at least 2 months when Graft Versus Host Disease (GVHD) could possibly start. As further testimony to this is the fact that I will go home within a day or so of the transplant and the doctor is only requiring 1 visit a week to the Dana-Farber Center in the weeks that follow.
As I mentioned yesterday, I did not know the impact of the fact that the donor’s blood type coincides with mine. The doctor said that it is definitely a plus because the transplant can take hold even quicker than otherwise. Though not a high priority criteria when selecting a donor, the doctors strive to get a blood type match, if at all possible. Again, thank you God that the most perfect of donors has been found.
Everything is still in perfect order regarding my condition, so let the show begin, I am ready….
Bob
February 15, 2009 11:30 PM
Freedom at last! Finally, I am not hooked up to the IV pole and don’t expect to be for the remainder of my stay.
It certainly was a quiet day today being a Sunday and all. As I mentioned yesterday, my appetite has continued to diminish after the first few days when I was eating like a horse. This is an expected occurrence with the doctor saying that eating less food was not going to be an issue, but that I needed to drink lots of water during the day to prevent dehydration. As my wife can attest to, that has never been one of my strengths.
Other than that, the doctors continue to say that everything continues to be perfect – kidneys, liver, heart, lungs, and my blood test results. We can’t ask for more than that!
However, you certainly get to drink water when they make those pill deliveries which they are wont to do at least 3 times a day – each time varying now from 1 pill to about 10.
I forgot to mention yesterday that we had asked the doctors what the donor’s blood type was as I would assume that type after the transplant. It turns out that the donor’s type is exactly the same as mine – A positive – so that won’t be changing as originally thought. I don’t know if this makes things easier for me or not since the doctors were always unconcerned as to what the donor’s type was to begin with.
I was expecting the same nurse tonight that I had last night, but when another nurse appeared, I asked why the change? It turns out that she was injured early this morning when trying to lift a patient and will be out of work for a few days. I have never thought of nursing as being an overly dangerous profession. But that’s what happens when we really aren’t exposed to these things and simply make assumptions. Now I have to give them even more respect than I already have for undertaking this sometimes very trying profession.
So, tomorrow is scheduled to be another day of rest in preparation for Tuesday. I’ll be glad when this is all over and I can go home once again and begin my recovery period.
For now…
Bob
It certainly was a quiet day today being a Sunday and all. As I mentioned yesterday, my appetite has continued to diminish after the first few days when I was eating like a horse. This is an expected occurrence with the doctor saying that eating less food was not going to be an issue, but that I needed to drink lots of water during the day to prevent dehydration. As my wife can attest to, that has never been one of my strengths.
Other than that, the doctors continue to say that everything continues to be perfect – kidneys, liver, heart, lungs, and my blood test results. We can’t ask for more than that!
However, you certainly get to drink water when they make those pill deliveries which they are wont to do at least 3 times a day – each time varying now from 1 pill to about 10.
I forgot to mention yesterday that we had asked the doctors what the donor’s blood type was as I would assume that type after the transplant. It turns out that the donor’s type is exactly the same as mine – A positive – so that won’t be changing as originally thought. I don’t know if this makes things easier for me or not since the doctors were always unconcerned as to what the donor’s type was to begin with.
I was expecting the same nurse tonight that I had last night, but when another nurse appeared, I asked why the change? It turns out that she was injured early this morning when trying to lift a patient and will be out of work for a few days. I have never thought of nursing as being an overly dangerous profession. But that’s what happens when we really aren’t exposed to these things and simply make assumptions. Now I have to give them even more respect than I already have for undertaking this sometimes very trying profession.
So, tomorrow is scheduled to be another day of rest in preparation for Tuesday. I’ll be glad when this is all over and I can go home once again and begin my recovery period.
For now…
Bob
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