We're getting near to the end now and it becomes so tempting to jump the gun at this point but I have stayed the course up to now and have no intention of straying from it. I am going to treat it as somewhat of a personal accomplishment to make it through the 100 days without breaking any of the rules.
It was a little cool today - it's amazing how the 60's seem cool now that we have had some days in the 90's. So it was a day to read the paper and watch some TV. And the end of the day, some neighbors stopped by for a while so that helped to brighten up it up. Even though we could have gone to their place, as I mentioned above, we're not bending the rules.
As usual, I feel fine. The reduced immuno-suppressant dosage has had no effect on me so far.
I look forward to spending some time outside tomorrow as they are predicting a much warmer day.
We'll let it go with a quick entry for the day...
Bob
May 22, 2009 10:40 PM 6 days to go
A couple of things to mention today...
First of all, I dared to go back and have a some of the "hair of the dog that bit me" and I had a bowl of cereal of breakfast. Last week, as most of you will recall, I an an "episode" after this meal. But, today all went well and I am now sure that it was just a fluke. But, it did take about a week before I felt comfortable enough to try again.
Last night, I was talking with our friends a little bit about this blog and how some of you have taken to the time to tell me how inspirational it has been, etc. I was saying that I am not intentionally trying to generate such feelings and that I was a little surprised by the types of reactions that it has invoked. I guess I am missing the point here. Because, in response, they said that a lot of the reason is that I am doing battle with such a deadly disease. Because I have felt so well throughout this entire journey, I have to admit that I don't really think of myself as being locked in battle with the leukemia. Maybe I should be - I don't know. But, because I feel so well, I tend to forget about it. The only reminder is the limitations that it imposes upon me during this recovery period.
Though I most certainly did not wish to succumb to this disease, I was not afraid to die and that was a distinct possibility at the outset. Now, of course, it is far from being a likely outcome at this point in time at it makes it a lot easier for me to be upbeat and positive - though I have been that way from the getgo.
I thank God that I can feel this way about my progress and that I don't ever forget. But the battles that so many others have faced during their treatments have eluded me which takes away from the severity of the situation.
Now with only 6 days to go and the dietary restrictions about to be removed, it will be even more difficult to realize where I am and what I have gone through.
I never wish to be known as Bob Johnson the cancer surviver. My miraculous recovery should serve to reinforce our belief in the power of prayer and the wonderful healing powers of our God - that's the true essence of my story.
Bob
First of all, I dared to go back and have a some of the "hair of the dog that bit me" and I had a bowl of cereal of breakfast. Last week, as most of you will recall, I an an "episode" after this meal. But, today all went well and I am now sure that it was just a fluke. But, it did take about a week before I felt comfortable enough to try again.
Last night, I was talking with our friends a little bit about this blog and how some of you have taken to the time to tell me how inspirational it has been, etc. I was saying that I am not intentionally trying to generate such feelings and that I was a little surprised by the types of reactions that it has invoked. I guess I am missing the point here. Because, in response, they said that a lot of the reason is that I am doing battle with such a deadly disease. Because I have felt so well throughout this entire journey, I have to admit that I don't really think of myself as being locked in battle with the leukemia. Maybe I should be - I don't know. But, because I feel so well, I tend to forget about it. The only reminder is the limitations that it imposes upon me during this recovery period.
Though I most certainly did not wish to succumb to this disease, I was not afraid to die and that was a distinct possibility at the outset. Now, of course, it is far from being a likely outcome at this point in time at it makes it a lot easier for me to be upbeat and positive - though I have been that way from the getgo.
I thank God that I can feel this way about my progress and that I don't ever forget. But the battles that so many others have faced during their treatments have eluded me which takes away from the severity of the situation.
Now with only 6 days to go and the dietary restrictions about to be removed, it will be even more difficult to realize where I am and what I have gone through.
I never wish to be known as Bob Johnson the cancer surviver. My miraculous recovery should serve to reinforce our belief in the power of prayer and the wonderful healing powers of our God - that's the true essence of my story.
Bob
May 21, 2009 10:45 PM 7 days to go
A few hold over items from yesterday...
I mentioned on Tuesday that I was expecting that we would not be at the clinic very long even though I was getting the catheter removed - and I was right! They did a great job of taking me fairly quickly after my doctor's appointment. We left the hospital at 10:15 and were home before noon. My wife fully expected a much longer time there but the procedure is a relatively quick one and they let me go after waiting 15 minutes instead of 20 at it's conclusion. They wish to make sure that there are no problems.
There was no mention of doing another bone marrow biopsy next week and I was most certainly not going to bring it up! I guess that my counts are so good that they feel that it's unnecessary at this point. I still have the one next February to look forward to - I can hardly wait.
Next, however, they are going to do a cholesterol and glucose check on me because the immuno-suppressants can screw those things up. This means that for the first time, I will have to fast before going to the clinic. No big deal - but I'll just have to remember it next Tuesday, that's all.
That's the last of the weekly appointments. From then on, it'll only be a meaningful update on the last Wednesday of the month. What I'll do for filler for the remainder of the days in the month, I'm not sure - but, I'll think of something.
Otherwise, a hot day(temperature in the 90's) but another quiet day. I still feel fine.
Had company for dinner which made it a very enjoyable meal.
Until tomorrow...
Bob
I mentioned on Tuesday that I was expecting that we would not be at the clinic very long even though I was getting the catheter removed - and I was right! They did a great job of taking me fairly quickly after my doctor's appointment. We left the hospital at 10:15 and were home before noon. My wife fully expected a much longer time there but the procedure is a relatively quick one and they let me go after waiting 15 minutes instead of 20 at it's conclusion. They wish to make sure that there are no problems.
There was no mention of doing another bone marrow biopsy next week and I was most certainly not going to bring it up! I guess that my counts are so good that they feel that it's unnecessary at this point. I still have the one next February to look forward to - I can hardly wait.
Next, however, they are going to do a cholesterol and glucose check on me because the immuno-suppressants can screw those things up. This means that for the first time, I will have to fast before going to the clinic. No big deal - but I'll just have to remember it next Tuesday, that's all.
That's the last of the weekly appointments. From then on, it'll only be a meaningful update on the last Wednesday of the month. What I'll do for filler for the remainder of the days in the month, I'm not sure - but, I'll think of something.
Otherwise, a hot day(temperature in the 90's) but another quiet day. I still feel fine.
Had company for dinner which made it a very enjoyable meal.
Until tomorrow...
Bob
May 20, 2009 10:25 PM 8 days to go
It's Wednesday, so there's lotsa things to discuss today.
First of all, my Hickman catheter was removed. Not a big deal as things go - but still it's a surgical procedure and there is always some level of concern. Before they will deign to remove it, you have to have a couple of blood tests done to make sure that your blood will clot properly after it's removed. Needless to say, the doctor said that my numbers were way beyond what they considered necessary.
After almost 7 months, it had literally and figuratively beome a part of my body. According to the doctor who removed it, that was what it was supposed to do. So, after the application of a local anesthesia, it took a little time to work the skin away from the collar that was underneath it but everything went off without a hitch. Even after all this time and all the blood tests that I have had, I could not bring myself to look at the removal process - it's still too squeamish for me.
It's funny and difficult to describe, but, even though I had anesthesia, my body immediately felt a little different when the catheter was removed and I knew it even before the doctor told me that it was out.
For my regular appointment, we met with the nurse practitioner who always supplies us with an interpretation of what my counts mean. She said that my donor's marrow was working fine but that it wasn't up to full production level yet. So, some of my red blood cell counts, while still a little low, are fine for where I am in the recovery cycle. We should should expect to see them rise in the months to come.
The results from last week's chimera test were in also. Of course, the donor bone marrow was still at 100% while the T-cell count has crept up from 75% to 86% to 94% at this point. Everything is progressing better than well. In fact, she commented that it was a pleasure to deal with patients like myself who are doing so well. And here I thought that it was my infectious personality that brought her so much pleasure.
As expected, the weaning process has now begun as the dosage for one of the immuno-suppressants(prograf) has now been cut from 2mg twice a day to 1.5mg twice a day. This will continue to the end of June unless something unexpected happens. At that point, it will be reduced again.
We met a young man in the waiting area who had his bone marrow transplant done 2 years and 4 months ago and he looks super. At least he looked young to us. I can only hope that I will look that young as well when I am all finished with my recovery.
So, it was a busy day with nothing but positives to report once again.
Let's all pray that it stays that way...
Bob
First of all, my Hickman catheter was removed. Not a big deal as things go - but still it's a surgical procedure and there is always some level of concern. Before they will deign to remove it, you have to have a couple of blood tests done to make sure that your blood will clot properly after it's removed. Needless to say, the doctor said that my numbers were way beyond what they considered necessary.
After almost 7 months, it had literally and figuratively beome a part of my body. According to the doctor who removed it, that was what it was supposed to do. So, after the application of a local anesthesia, it took a little time to work the skin away from the collar that was underneath it but everything went off without a hitch. Even after all this time and all the blood tests that I have had, I could not bring myself to look at the removal process - it's still too squeamish for me.
It's funny and difficult to describe, but, even though I had anesthesia, my body immediately felt a little different when the catheter was removed and I knew it even before the doctor told me that it was out.
For my regular appointment, we met with the nurse practitioner who always supplies us with an interpretation of what my counts mean. She said that my donor's marrow was working fine but that it wasn't up to full production level yet. So, some of my red blood cell counts, while still a little low, are fine for where I am in the recovery cycle. We should should expect to see them rise in the months to come.
The results from last week's chimera test were in also. Of course, the donor bone marrow was still at 100% while the T-cell count has crept up from 75% to 86% to 94% at this point. Everything is progressing better than well. In fact, she commented that it was a pleasure to deal with patients like myself who are doing so well. And here I thought that it was my infectious personality that brought her so much pleasure.
As expected, the weaning process has now begun as the dosage for one of the immuno-suppressants(prograf) has now been cut from 2mg twice a day to 1.5mg twice a day. This will continue to the end of June unless something unexpected happens. At that point, it will be reduced again.
We met a young man in the waiting area who had his bone marrow transplant done 2 years and 4 months ago and he looks super. At least he looked young to us. I can only hope that I will look that young as well when I am all finished with my recovery.
So, it was a busy day with nothing but positives to report once again.
Let's all pray that it stays that way...
Bob
May 19, 2009 10:45 PM 9 days to go
Down to single digits now and it's also a red letter day for one of my granddaughters as it is her birthday. Unfortunately, I cannot be at the celebration at her home. But, there is always next year. It's nice to be able to write that down. Six months ago, who knew what next year would bring!
I got confirmation today that my catheter will be removed tomorrow. As with all things, there are pluses and minuses to this - but the pluses far outweigh the minuses. The major plus is that there will no longer be any need to purchase supplies in order to be able to flush it everyday. Of course, it also eliminates the possibility for infection as that was always a concern. Even though I never encountered anything close to an infection, I had heard stories of those who did.
The only minus is that from now on, when I go to the clinic, I'll have to be stabbed for my blood tests. Since we're almost to the once a month phase, that's no big deal. Normally, I would have waited until next week(the last of my weekly appointments) but I am now out of supplies and ordering a months worth(the minimum amount) makes no sense for one week.
I am getting to enjoy a few more things in life as I took my grandson to his baseball game and watched him play. Of course, I have to sit off to the side and avoid contact with people - but that's a small price to pay.
I am feeling fine and looking forward to tomorrow even though it will be our typical 5 AM start.
The removal procedure is quick, they tell me, and there is no real wait. Just show up and they'll do it.
So I envision another relatively short day at the clinic.
We'll see...
Bob
I got confirmation today that my catheter will be removed tomorrow. As with all things, there are pluses and minuses to this - but the pluses far outweigh the minuses. The major plus is that there will no longer be any need to purchase supplies in order to be able to flush it everyday. Of course, it also eliminates the possibility for infection as that was always a concern. Even though I never encountered anything close to an infection, I had heard stories of those who did.
The only minus is that from now on, when I go to the clinic, I'll have to be stabbed for my blood tests. Since we're almost to the once a month phase, that's no big deal. Normally, I would have waited until next week(the last of my weekly appointments) but I am now out of supplies and ordering a months worth(the minimum amount) makes no sense for one week.
I am getting to enjoy a few more things in life as I took my grandson to his baseball game and watched him play. Of course, I have to sit off to the side and avoid contact with people - but that's a small price to pay.
I am feeling fine and looking forward to tomorrow even though it will be our typical 5 AM start.
The removal procedure is quick, they tell me, and there is no real wait. Just show up and they'll do it.
So I envision another relatively short day at the clinic.
We'll see...
Bob
May 18, 2009 10:25 PM 10 days to go
It actually happened today! My meds arrived! Now, I am all set for a while having to order again in about 3 weeks. I'll be so glad when I am off these medications so that I will no longer have to deal with the "high quality of service" provided by the system.
Time marches on and there are only 10 days left. I still feel like I am rushing my life away here. I don't wish to, but the older we get the quicker the pace of time seems to be and we seem to be forever trying to keep up with it all the while falling further and further behind.
It's time to revisit our favorite topic once again - my hair. After about 3 months since my last round of chemo, the darker hairs are now making an appearance on the top of my head. White has been the color of choice for a while now and I was wondering if that was going to be it. Not that white isn't becoming on me - but I do appreciate the effort being put in to restore my original color.
So we continue toward a hoped for milestone day on Wednesday as my recovery continues on without a hitch.
So much for today's entry...
Bob
Time marches on and there are only 10 days left. I still feel like I am rushing my life away here. I don't wish to, but the older we get the quicker the pace of time seems to be and we seem to be forever trying to keep up with it all the while falling further and further behind.
It's time to revisit our favorite topic once again - my hair. After about 3 months since my last round of chemo, the darker hairs are now making an appearance on the top of my head. White has been the color of choice for a while now and I was wondering if that was going to be it. Not that white isn't becoming on me - but I do appreciate the effort being put in to restore my original color.
So we continue toward a hoped for milestone day on Wednesday as my recovery continues on without a hitch.
So much for today's entry...
Bob
May 17, 2009 10:45 PM 11 days to go
Another quiet day. Of course, there was no mail delivery today, but the ever efficient USPS has yet to deliver my medicine that was shipped on Wednesday. They are sooo slow.
We did try to go to a soccer game today that involved 2 of my granddaughters but the cold weather and the rain that started as the game began forced us to leave. My wife did not want to risk my being outside in such inhospitable conditions.
I am feeling fine and am very grateful that I am that way. God has looked upon me with great favor and I know that it is a debt that I can never repay. And, while I know that God is not looking for repayment, I will forever feel that I always have to do something more that constitutes a continuous attempt to do so.
A week of milestones is now underway. On Wednesday, I should be getting my catheter removed and I should be starting the weaning process for my immuno-suppressants.
So things will be happening once again...
Bob
We did try to go to a soccer game today that involved 2 of my granddaughters but the cold weather and the rain that started as the game began forced us to leave. My wife did not want to risk my being outside in such inhospitable conditions.
I am feeling fine and am very grateful that I am that way. God has looked upon me with great favor and I know that it is a debt that I can never repay. And, while I know that God is not looking for repayment, I will forever feel that I always have to do something more that constitutes a continuous attempt to do so.
A week of milestones is now underway. On Wednesday, I should be getting my catheter removed and I should be starting the weaning process for my immuno-suppressants.
So things will be happening once again...
Bob
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