A very quiet Saturday. A potato day to say the least. Everything is still on track.
It's a little chilly outside, so we did not go out for a walk. We'll wait until the weather starts to warm up at midweek. Other than that, there is really not much to say.
My wife went to an event at our church this morning and passed along all the well wishes that people had for me. I guess that they haven't forgotten about me yet. I can tell you that I certainly look forward to being able to return at some point. Right now that point looks like 2010.
With my not having much to say, I would expect that you people will start to desert me in droves as the news always seems to be that there is no news. Suffice it to say, I am still not out of the woods yet but I have no idea whether or not it's going to be simple journey or one marked with a few breakdowns along the way. Only time will tell.
As I mentioned the other day, I have started to reorder the medications that I will need in the upcoming months. The cheapest way to do this over the internet via Medco. They basically charge you 2 months for a 3 month supply - they only do a 90 day minimum. That comes in handy for some of the the drugs. Believe it or not, the immuno-suppressants go for about $900 and $1000. These two hopefully will be discontinued before the year is out. Another drug that I take, however, must be taken for the entire year and lists for $1286 for a 1 month supply! Thank God for insurance!
So yesterday, when I got delivery of the 3 month supply of the latter drug, I was looking at over $3500 in drugs! It's mind boggling. But, what choice do you have? As one of my daughters said, "you could buy a car with that stuff!" Not a very good one, I admit, but it could be done.
Anyway, that's about it from here for today. As they say, "no news is good news"...
Bob
March 20, 2009 10:05 PM 69 days to go
The "major" event of the day was that spring has finally arrived. No change in the weather - but it certainly gives us cause to hope that it will improve in the near future.
Likewise, no change in my condition. So we can't look for much improvement in that area but we can look for the transplant to take and for the graft vs host disease(known as GVHD in the vernacular), side effects to be minimal. Only time will tell and time is the one thing that I seem to have plenty of at this time.
I have been e-mailing Joan Barr-Smith over the past few days and, as much as I can assist her by sharing my experience, I find that being able to connect with someone who is somewhat paralleling my recent history has been of great benefit to me as well. So, just when things seem to come come to an ebb as I wait out my recovery period, they begin to pick up on another front. It was the same way back in January when Janne happened upon this blog and began sharing her experience from the donor's side.
God works in strange ways and I am never ceased to be amazed at the way things seem to go. Certainly they never seem to go the way that I had assumed they would. As much as this blog has been acknowledged as being a to help others, it is a two-way street and I look for(and receive) support from all of you as well. I cannot thank you enough.
So, as the arrival of spring sets our sights on new life and looking for better days to come, I look for the same...
Bob
Likewise, no change in my condition. So we can't look for much improvement in that area but we can look for the transplant to take and for the graft vs host disease(known as GVHD in the vernacular), side effects to be minimal. Only time will tell and time is the one thing that I seem to have plenty of at this time.
I have been e-mailing Joan Barr-Smith over the past few days and, as much as I can assist her by sharing my experience, I find that being able to connect with someone who is somewhat paralleling my recent history has been of great benefit to me as well. So, just when things seem to come come to an ebb as I wait out my recovery period, they begin to pick up on another front. It was the same way back in January when Janne happened upon this blog and began sharing her experience from the donor's side.
God works in strange ways and I am never ceased to be amazed at the way things seem to go. Certainly they never seem to go the way that I had assumed they would. As much as this blog has been acknowledged as being a to help others, it is a two-way street and I look for(and receive) support from all of you as well. I cannot thank you enough.
So, as the arrival of spring sets our sights on new life and looking for better days to come, I look for the same...
Bob
March 19, 2009 9:55 PM 70 days to go
Not much to discuss about today but there are a few items that are left over from yesterday...
First of all, I still feel fine - there is no change in my condition. Most certainly I want to keep it that way and God has granted my wish up to this point. Not to shed any doubt on my condition, but I have full faith and confidence that things will continue like this on down the road.
Now back to the leftovers...
The doctor mentioned that both me and my donor are subject to getting CMV. Reading up on this, I see that with my immune system compromised that it can be a problem. I am not sure why my donor stands to be at risk as well. In any case, this is the reason for the weekly visits at this point. If I show any symptoms - fever, swollen glands, or fatigue then they will give me a drug to counteract the disease. Unfortunately, according to the doctor, the side effects are not pleasant so they take the "wait and see" approach before administering it. In the past, they were more proactive by giving the drug up front to prevent CMV from occurring - but the cons far outweighed the pros so they are now taking this new approach.
Also, this time the bone marrow biopsy has a chimera component to it. Supposedly, the results from yesterday's biopsy will be ready by next Wednesday so we can get a preview as to whether or not the donor's marrow is doing the job that it's supposed to do. However, I guess that the blood test is the "real McCoy" and that won't be ready until the following week.
As for me, as much as I want to know that everything is OK in that department, I really want to know that my marrow is still cancer free. If it's not, then it's going to be a few steps back before we can take the necessary steps to go forward once again. To be honest with you, I really do not wish to undergo another round of chemo. So please pray for a clean marrow result.
That's about it at this point...
Bob
First of all, I still feel fine - there is no change in my condition. Most certainly I want to keep it that way and God has granted my wish up to this point. Not to shed any doubt on my condition, but I have full faith and confidence that things will continue like this on down the road.
Now back to the leftovers...
The doctor mentioned that both me and my donor are subject to getting CMV. Reading up on this, I see that with my immune system compromised that it can be a problem. I am not sure why my donor stands to be at risk as well. In any case, this is the reason for the weekly visits at this point. If I show any symptoms - fever, swollen glands, or fatigue then they will give me a drug to counteract the disease. Unfortunately, according to the doctor, the side effects are not pleasant so they take the "wait and see" approach before administering it. In the past, they were more proactive by giving the drug up front to prevent CMV from occurring - but the cons far outweighed the pros so they are now taking this new approach.
Also, this time the bone marrow biopsy has a chimera component to it. Supposedly, the results from yesterday's biopsy will be ready by next Wednesday so we can get a preview as to whether or not the donor's marrow is doing the job that it's supposed to do. However, I guess that the blood test is the "real McCoy" and that won't be ready until the following week.
As for me, as much as I want to know that everything is OK in that department, I really want to know that my marrow is still cancer free. If it's not, then it's going to be a few steps back before we can take the necessary steps to go forward once again. To be honest with you, I really do not wish to undergo another round of chemo. So please pray for a clean marrow result.
That's about it at this point...
Bob
March 18, 2009 11:15 PM 71 days to go
Well, I'm so glad that it's over! Even though things went well, having a bone marrow biopsy behind you(what a horrible pun!) and not staring you in the face is a great relief. Though I did find out that I may need another one in 3 months and for sure(lucky me!) another one in a year. I have to say that the nurse practitioner did an excellent job. Utilizing only a local anesthetic, the discomfort level was really at a minimum. Having gone this exact route before and having had a very unpleasant experience, I was somewhat on edge when we embarked on the same approach one more time. Each time that I hear those magical words "We're all done", I feel like a kid who got everything he wanted for Christmas. Thank you God!
The doctor said that my blood counts were still great - again music to my ears. We also had blood drawn for the chimera test to ascertain whose marrow is actually producing the blood cells - mine or the donor's. I could not believe it when the lab tech said that they had ordered the test to be done two ways and that each way required 8 tubes of blood to be drawn! Anemia, here I come! By the way, the word derives from an ancient Greek word meaning "without blood" - how appropriate!
We're also making progress on another front as well. As I mentioned the other day, it is time to re-up on my prescriptions. This we discussed with the doctor today. I was pleased to see that he knocked the magnesium oxide off the list and he said the prescription vitamin pills and folic acid pills could be combined into a simple over-the-counter vitamin that contained folic acid. This cuts my medications down to 5. Having started with 11, we're making progress toward that zero number. It will, however, be quite awhile before that can be achieved.
I got some disturbing news today, the deacon at our church has been very recently diagnosed with acute myelogenous leukemia - the same disease that I have! From her e-mail it sounds like she will be starting her 7 day chemo regimen around Sunday. This is exactly what I had to undergo last November as the first step on my road to recovery. My thoughts and prayers are with her and I pray that God grants her the journey that I have had so far.
Through the power of the internet, I know that I am reaching a lot of people and, more importantly, a lot of prayer lists. If you wish to send cards, etc., I will give you the details as I know them to be...
The Rev. Joan Barr Smith
1835 Lincoln St.
Evanston, IL 60201
Some of you will probably question why the Illinois address but she only recently came to our church here in New Hampshire from the Chicago area. I am sure that she is returning to longtime family and friends during this trying time.
We all know that prayer can work miracles and that it has no side effects.
So please keep her in your prayers....
Bob
The doctor said that my blood counts were still great - again music to my ears. We also had blood drawn for the chimera test to ascertain whose marrow is actually producing the blood cells - mine or the donor's. I could not believe it when the lab tech said that they had ordered the test to be done two ways and that each way required 8 tubes of blood to be drawn! Anemia, here I come! By the way, the word derives from an ancient Greek word meaning "without blood" - how appropriate!
We're also making progress on another front as well. As I mentioned the other day, it is time to re-up on my prescriptions. This we discussed with the doctor today. I was pleased to see that he knocked the magnesium oxide off the list and he said the prescription vitamin pills and folic acid pills could be combined into a simple over-the-counter vitamin that contained folic acid. This cuts my medications down to 5. Having started with 11, we're making progress toward that zero number. It will, however, be quite awhile before that can be achieved.
I got some disturbing news today, the deacon at our church has been very recently diagnosed with acute myelogenous leukemia - the same disease that I have! From her e-mail it sounds like she will be starting her 7 day chemo regimen around Sunday. This is exactly what I had to undergo last November as the first step on my road to recovery. My thoughts and prayers are with her and I pray that God grants her the journey that I have had so far.
Through the power of the internet, I know that I am reaching a lot of people and, more importantly, a lot of prayer lists. If you wish to send cards, etc., I will give you the details as I know them to be...
The Rev. Joan Barr Smith
1835 Lincoln St.
Evanston, IL 60201
Some of you will probably question why the Illinois address but she only recently came to our church here in New Hampshire from the Chicago area. I am sure that she is returning to longtime family and friends during this trying time.
We all know that prayer can work miracles and that it has no side effects.
So please keep her in your prayers....
Bob
March 17, 2009 11:15 PM 72 days to go
Happy St. Patrick's Day to all!
Everything went well today...
- I feel fine
- the printer that we ordered came and I set it up with no problem
- we took advantage of the weather and went for a walk
About the only thing that I wrestle with these days is that my medications tend to leave an aftertaste in my mouth such that it overrides whatever I've eaten for a meal and it tends to temporize my desire to eat. While consuming the meal, I have no problem - unlike chemo which affected the taste of everything and made just about everything distasteful. However, after the meal, the medicinal aftertaste sets in and it destroys all the enjoyment that you get from eating.
I suppose that that is minor in the grand scheme of things but I don't have much to enjoy at this point in time other than my meals. As the song goes, "I don't get around much, anymore".
Tomorrow is another early day at the clinic with the added fun of undergoing a bone marrow biopsy once again. So, I'll let you know how it all works out. However, I don't expect that there will be any issues and I look forward to a somewhat short clinic visit.
That's about it for today.
Tomorrow's entry should should be a little more significant...
Bob
Everything went well today...
- I feel fine
- the printer that we ordered came and I set it up with no problem
- we took advantage of the weather and went for a walk
About the only thing that I wrestle with these days is that my medications tend to leave an aftertaste in my mouth such that it overrides whatever I've eaten for a meal and it tends to temporize my desire to eat. While consuming the meal, I have no problem - unlike chemo which affected the taste of everything and made just about everything distasteful. However, after the meal, the medicinal aftertaste sets in and it destroys all the enjoyment that you get from eating.
I suppose that that is minor in the grand scheme of things but I don't have much to enjoy at this point in time other than my meals. As the song goes, "I don't get around much, anymore".
Tomorrow is another early day at the clinic with the added fun of undergoing a bone marrow biopsy once again. So, I'll let you know how it all works out. However, I don't expect that there will be any issues and I look forward to a somewhat short clinic visit.
That's about it for today.
Tomorrow's entry should should be a little more significant...
Bob
March 16, 2009 10:10 PM 73 days to go
Another quiet day. We did try to help a friend of my wife's using Microsoft Frontpage with a website that she has inherited and wishes to update. I'm no pro with Frontpage, so we did not make much headway. But, I have a copy of the site and I'll look at it in my "free" time(believe me when I say it's all free), and see what I can do to help her. It's certainly good knowledge to pick up and it will help to keep me occupied in the days to come.
Other than that, nothing has really changed with me. Tomorrow is the last of the "potato" days as I "eagerly" await Wednesday's bone marrow biopsy. Without a doubt, I am sure that the day will seem to fly by for me.
Also tomorrow, the new printer is scheduled to arrive. So, that will give me something else to do as well.
I know the entries are short at this point, but that's the ideal situation as nothing of importance is occurring. That, however, does not mean that I can be dropped from any and all prayer lists as we still have a long way to go and we are not out of the woods yet - though we are on track.
So, I'm going to sign off now and take my 10:00 meds...
Bob
Other than that, nothing has really changed with me. Tomorrow is the last of the "potato" days as I "eagerly" await Wednesday's bone marrow biopsy. Without a doubt, I am sure that the day will seem to fly by for me.
Also tomorrow, the new printer is scheduled to arrive. So, that will give me something else to do as well.
I know the entries are short at this point, but that's the ideal situation as nothing of importance is occurring. That, however, does not mean that I can be dropped from any and all prayer lists as we still have a long way to go and we are not out of the woods yet - though we are on track.
So, I'm going to sign off now and take my 10:00 meds...
Bob
March 15, 2009 10:35 PM 74 days to go
It was a beautiful day here in southern New Hampshire and we did take advantage of it by going for a walk. Unfortunately, it's still a little too early to have several consecutive days be this good so we'll have to probably pass up walking for a few more days until the weather improves once again.
Not much to talk about as there has been no change in my condition - which is certainly a good thing.
With my month's supply of pills provided by the hospital(provided! we had to ante up the money on the spot!) coming to an end, I am going to get on line tomorrow and see how ordering them on-line is going to work and how much money we can save. With some of my medications being required for the next year(mostly the antibiotics and vitamins), having to get a 90 day supply will not be a consideration. So, we'll see how that all works out.
So, another short entry...
Bob
Not much to talk about as there has been no change in my condition - which is certainly a good thing.
With my month's supply of pills provided by the hospital(provided! we had to ante up the money on the spot!) coming to an end, I am going to get on line tomorrow and see how ordering them on-line is going to work and how much money we can save. With some of my medications being required for the next year(mostly the antibiotics and vitamins), having to get a 90 day supply will not be a consideration. So, we'll see how that all works out.
So, another short entry...
Bob
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