"Just the Facts"-- Can't believe just how tired you can get. Can't get off the couch or can't get back to it quick enough. Gotta get through one more day, then infusion.
I have never really contemplated the relationship of blood to life before now. But today it is as plain as day before me, that Blood is Life. Without it we cease to function. It's hard to watch this normally healthy, active guy sit on the side of the bed in full concentration of having to get up. It takes thought to muster up the energy to do this simple task, one most of the rest of us do without a thought. We are not quite sure how our count got off track and we ended up in the low zone. It snuck up on us, bummer.
So we continue to progress in getting ready for the changes to our lives. I have successfully moved the bedroom/sitting rooms to accommodates B's recovery time in the home. We are beginning to practice the constant washing of the hands, wiping down of the house knobs, phones and remotes. The food research is beginning, but we still have some time there. We no longer will be out amongst the masses. We might go to one or two more restaurants before we can no longer do that. We are planning to live small and quiet for a piece of time in our lives, as we concentrate on getting back to health. Not sure that I would choose to do all this on my own, but there is an inner excitement about the things we will learn and the insights we will gain during this time. The Lord says countless times to Wait on Him. We surely will be doing this, as we wait for B to get better. I can't think of a better place to be, remember this is just a season!
Until next time
Hopeful Believer
Saturday, January 8, 2011
Friday, January 7, 2011
Vacation? or Treatment?
"Just the Facts"--Blood level is low, it's in the 6's and we have to go through the weekend yet. Getting blood on Monday, but will be in the low 6's at that time. Got to stay down and take it easy.
I once heard a description of a bone marrow transplant as having to go through hell and back. So who'd ever imagine someone would be looking forward to this treatment. Well, when you feel the life fading out of you because your blood level just cannot be sustained at an adequate level to perform basic functions, you begin to look at the treatment and everything involved as a welcomed respite, maybe even a vacation. No longer are you the one who has to vigilantly watch the levels and make sure you have enough to operate, but now there is someone else who will take care of that and any other issues you are having. Never mind that along the way you will be nuked and made to feel the worst flu symptoms of your life.
Now, keeping with the vacation train of thought, add in the recently visited Thorton Hospital accommodations and voila, you have a dream vacation pictured. I heard a comparison to a Westin there somewhere. Oh, and can I have a west sunset view? It's the Chemo (spa) treatment you have to watch out for. I guess the accommodations won't be a problem, as Thorton is really nice!
This UCSD Bone Marrow Transplant team is really top notch. The team is really on top of things for B.
B's blood type is A- and his donor's blood type is O-. At the last infusion in December we noted that they called for a change in the blood he was given. All this time he had been receiving A-, but they have now switched it to O-. They are trying to remove as much A- type blood from his system as they can before the transplant. How interesting is that? This way there is less of his stuff to put up a fuss with the new stuff. The idea is to reduce the amount of possible conflict between the fluids. Our bodies are amazing and most of the time operate automatically without our help. I know some may not believe in a creator, but I certainly do. And the stuff we are dealing with for B is right at the creation level. We have 2 weeks to go.
Until next time
Hopeful Believer
I once heard a description of a bone marrow transplant as having to go through hell and back. So who'd ever imagine someone would be looking forward to this treatment. Well, when you feel the life fading out of you because your blood level just cannot be sustained at an adequate level to perform basic functions, you begin to look at the treatment and everything involved as a welcomed respite, maybe even a vacation. No longer are you the one who has to vigilantly watch the levels and make sure you have enough to operate, but now there is someone else who will take care of that and any other issues you are having. Never mind that along the way you will be nuked and made to feel the worst flu symptoms of your life.
Now, keeping with the vacation train of thought, add in the recently visited Thorton Hospital accommodations and voila, you have a dream vacation pictured. I heard a comparison to a Westin there somewhere. Oh, and can I have a west sunset view? It's the Chemo (spa) treatment you have to watch out for. I guess the accommodations won't be a problem, as Thorton is really nice!
This UCSD Bone Marrow Transplant team is really top notch. The team is really on top of things for B.
B's blood type is A- and his donor's blood type is O-. At the last infusion in December we noted that they called for a change in the blood he was given. All this time he had been receiving A-, but they have now switched it to O-. They are trying to remove as much A- type blood from his system as they can before the transplant. How interesting is that? This way there is less of his stuff to put up a fuss with the new stuff. The idea is to reduce the amount of possible conflict between the fluids. Our bodies are amazing and most of the time operate automatically without our help. I know some may not believe in a creator, but I certainly do. And the stuff we are dealing with for B is right at the creation level. We have 2 weeks to go.
Until next time
Hopeful Believer
Thursday, January 6, 2011
My Knight
"Just the Facts"-- Dragging, levels must be getting low. Sleeping sounds so good.
To look at him, you'd never know he was ill! That is what we have heard repeatedly from several doctors. But to see his sleep pattern or watch him walk up the stairs tells a different story. But he was still able to take care of my flat tire yesterday. Yea! I'm going to miss that for a while.
Last test completed today and ended with another blood test. Ugh! Then went to "the specialist" and they took 13 vials....hey, we need another transfusion, fast! Wait, didn't we just get one? Yes, that is how this adventure has been going. This transplant couldn't be coming any too soon. So as of today we are in the 2 week countdown. Lots to do (and not to do) during this time. B has to stay well and avoid anything with a virus. I need to clean, clean, clean. B won't be able to be around people or crowds, or much of anything but home once he has the transplant, so do we go out and have a blast? I don't think so. Seems much of that was already taken care of by being sick for the last 2 months. We all had to get flu shots, even my brother-in-law did and this was his first. There is only one that still needs it (and you know who you are, sorry babe).
I heard a story the other day about a guy that for some time now has faithfully been providing platlettes for those in need. Then I recently found out that a co-worker of mine was actually a bone marrow donor 10 years ago. What are the odds? I also know a few others that have faithfully and without prodding given blood regularly over the years. I would just like to say that these people are heros. They save lives every day and don't even know it, get recognized or thanked. Well, I would like to thank each of you for your donation of life. I am reminded of your gift every day while looking at my husband! What great hearts you all have.
Until next time,
Hopeful Believer
To look at him, you'd never know he was ill! That is what we have heard repeatedly from several doctors. But to see his sleep pattern or watch him walk up the stairs tells a different story. But he was still able to take care of my flat tire yesterday. Yea! I'm going to miss that for a while.
Last test completed today and ended with another blood test. Ugh! Then went to "the specialist" and they took 13 vials....hey, we need another transfusion, fast! Wait, didn't we just get one? Yes, that is how this adventure has been going. This transplant couldn't be coming any too soon. So as of today we are in the 2 week countdown. Lots to do (and not to do) during this time. B has to stay well and avoid anything with a virus. I need to clean, clean, clean. B won't be able to be around people or crowds, or much of anything but home once he has the transplant, so do we go out and have a blast? I don't think so. Seems much of that was already taken care of by being sick for the last 2 months. We all had to get flu shots, even my brother-in-law did and this was his first. There is only one that still needs it (and you know who you are, sorry babe).
I heard a story the other day about a guy that for some time now has faithfully been providing platlettes for those in need. Then I recently found out that a co-worker of mine was actually a bone marrow donor 10 years ago. What are the odds? I also know a few others that have faithfully and without prodding given blood regularly over the years. I would just like to say that these people are heros. They save lives every day and don't even know it, get recognized or thanked. Well, I would like to thank each of you for your donation of life. I am reminded of your gift every day while looking at my husband! What great hearts you all have.
Until next time,
Hopeful Believer
Wednesday, January 5, 2011
Tuesday, January 4, 2011
Huff and Puff
"Just the Facts"-- Wow, we blew right through that pulmonary test! Get the pun? 5 of 6 tests completed, and we are getting our sense back. We could still sleep right through a tornado, but, hey, who wouldn't give for a really good sound sleep.
It feels like we are getting a bit back to normal after all the respiratory problems of November/December and all the extra medications. We still have one more test to complete and will begin that tomorrow.
Later this week we have a big appointment with "the specialist". This visit is always a little bit overwhelming as it is in the Moores Cancer Center. This is also where you hear all the really heavy stuff. So this visit is where we sign all the waivers and acknowledgment that we understand the risks involved. We also turn in the mandatory advanced directive. ugh! Guess we are officially grown up now that we have that.
So you may wonder what is going on in B's mind with all this scheduling and commotion. Dealing with this stuff is always a hassle and tiresome, but then there are always difficulties during training. Well, he has always been athletic, and for several years trained and ran marathons and triathlons. This transplant is what he considers his Ironman and has the mindset of training and gearing up for the biggest race of his life. He completely changed his diet 9 months ago, dropped 18 pounds and transformed his physique. Mentally he has been spending lots of time in his Bible and with the Lord. He has also been brushing up on his chess game. He even taught me to play. I will get to be his opponent during Chemo Brain. He still may win! Anyway he feels he is ready for this next big phase and is looking forward to it. Of course, it has been amazing to be the recipients of so much focused prayer. We feel it so much and can't thank you all enough.
Until next time,
Hopeful Believer
It feels like we are getting a bit back to normal after all the respiratory problems of November/December and all the extra medications. We still have one more test to complete and will begin that tomorrow.
Later this week we have a big appointment with "the specialist". This visit is always a little bit overwhelming as it is in the Moores Cancer Center. This is also where you hear all the really heavy stuff. So this visit is where we sign all the waivers and acknowledgment that we understand the risks involved. We also turn in the mandatory advanced directive. ugh! Guess we are officially grown up now that we have that.
So you may wonder what is going on in B's mind with all this scheduling and commotion. Dealing with this stuff is always a hassle and tiresome, but then there are always difficulties during training. Well, he has always been athletic, and for several years trained and ran marathons and triathlons. This transplant is what he considers his Ironman and has the mindset of training and gearing up for the biggest race of his life. He completely changed his diet 9 months ago, dropped 18 pounds and transformed his physique. Mentally he has been spending lots of time in his Bible and with the Lord. He has also been brushing up on his chess game. He even taught me to play. I will get to be his opponent during Chemo Brain. He still may win! Anyway he feels he is ready for this next big phase and is looking forward to it. Of course, it has been amazing to be the recipients of so much focused prayer. We feel it so much and can't thank you all enough.
Until next time,
Hopeful Believer
Monday, January 3, 2011
Jan 3- Early Day
"Just the Facts"-- New Milestone, 3rd bone marrow aspiration and biopsy in 10 months. Thank goodness for pain medication. Slept the rest of the day to get some sense back.
So, so thankful to Greta for her kind face and encouraging words while going through this procedure. It is always helpful finding a familiar face, so that you don't feel so alone, while going through something difficult or stressful. Nice, how those special blessings show up when you need it. B was emotional and silly when I got him today, it almost scared me, but he was saying just how really nice they had taken care of him and it blessed him to his core. See, he was fragile today, and all the caregivers were so kind and gentle to him. This is not the first time we have encountered this and it blesses us each time we run into it. So I am thinking that kindness is a universal language, and maybe we should all excercise it more, even if we don't know the other person is fragile today. Well, that is what I think.
B has been trying to wrap up a series of pre-transplant testing. We have been pushing to get them all done through the holidays, and it has proven no small feat. The first and most sad news was that B's Doctor, the one he has been seeing all this time and had diagnosed him, had a massive heart attack and died the week of Christmas. We have been so sad for his family, to have their husband/dad die so close to family gathering time. He was an excellent doctor and took such good care of B as I am sure he did with all his patients. Thishas caused some upset in the doctors office to see how to get everything covered. We are on a time clock and it all must be done before we begin the transplant process. So we still have 2 more tests to complete, one tomorrow, and one following that takes place over a 24 hour period. There are all kinds of test, I think medical ones may be the scariest. Anyhow all in all for a guy that had never been to a hospital before , B is fairing pretty well under the circustances and is looking to the next big step in a few weeks time.
Until next time,
Hopefull Believer
So, so thankful to Greta for her kind face and encouraging words while going through this procedure. It is always helpful finding a familiar face, so that you don't feel so alone, while going through something difficult or stressful. Nice, how those special blessings show up when you need it. B was emotional and silly when I got him today, it almost scared me, but he was saying just how really nice they had taken care of him and it blessed him to his core. See, he was fragile today, and all the caregivers were so kind and gentle to him. This is not the first time we have encountered this and it blesses us each time we run into it. So I am thinking that kindness is a universal language, and maybe we should all excercise it more, even if we don't know the other person is fragile today. Well, that is what I think.
Until next time,
Hopefull Believer
Sunday, January 2, 2011
January 2 -Second day of New Year
"Just the Fact"-- B was very tired today, still feels like he has an illness. No steriods today, so that should help. Slept a lot. Prelude to the near future.
We are sort of on a count down until B begins the catherter insert and then hospital admittance. We have to overhaul the entire house and clean it spic and span! Ugh! This is very difficult with a wild dog a foot. But I continue to work at this. I am moving rooms to accomodate his sleeping room and sitting room better so he doesn't feel so tuck away, but very safe and sanitary. Many things will be restricted for him once he comes home and this is what we are preparing the home and ourselves for. I have given the bath a facelift and am preparing to vacate as he can be the only one to use it. Thank goodness we have 2 bathrooms in the house.
2011 will have many reflections from me, many are still just formulating. We are looking forward to the things to come, sure some of it is unknown, but we know that we are not suppose to be able to see around the corner and that it takes action on our part to invite peace and hope into our hearts and wait to see what the "plan of good" is for us.
Bless you in this new year.
Hopeful Believer.
We are sort of on a count down until B begins the catherter insert and then hospital admittance. We have to overhaul the entire house and clean it spic and span! Ugh! This is very difficult with a wild dog a foot. But I continue to work at this. I am moving rooms to accomodate his sleeping room and sitting room better so he doesn't feel so tuck away, but very safe and sanitary. Many things will be restricted for him once he comes home and this is what we are preparing the home and ourselves for. I have given the bath a facelift and am preparing to vacate as he can be the only one to use it. Thank goodness we have 2 bathrooms in the house.
2011 will have many reflections from me, many are still just formulating. We are looking forward to the things to come, sure some of it is unknown, but we know that we are not suppose to be able to see around the corner and that it takes action on our part to invite peace and hope into our hearts and wait to see what the "plan of good" is for us.
Bless you in this new year.
Hopeful Believer.
New Years Day
"Just the Facts"-- B is very tired and cranky/edgy today. He is on his fourth round of steroids for the throat cold he couldn't shake for 7 weeks, that allowed us to visit his doctor 3 times, ER 3 times and Urgent care 2 times all in 3 weeks. Request for prayer for healing for that throat. Thanks!
Well, it's a new year and many unique and mysterious things to look forward to. January is going to be a busy month for us, as B will be receiving his treatment for his condition. He has been on medication since March that was an attempt to get the blood producing, but after careful and hopeful monitoring it was determined that the blood was not producing at all. About 4 months ago he was entered into the MUD search, (Matching Unrelated Donor) for bone marrow. His brother, who was totally willing, was not a match, so this was the next step. You see, his transfusions are not quite keeping up....sometimes he goes in for blood in 9 days rather than 14 and a couple of times he has gotten 3 bags instead of the usual 2. We have seen this slow progression over a few months, so the news that came mid November that a match was found was the most exciting news! And not just any match this was a perfect match.
Donors in the registry provide blood cells that are typed for genetic markers. There are 5 that are in pairs for a total of 10. They look for a match range from 80 to100%. B's donor matches 100% on all 10 genetic markers! Yippee! One additional tidbit is that, there is a virus about 70% of the population walks around with. B does not have this virus in his body and neither does his donor, which just eliminates a complication.
Another wonderful blessing!
So, he needs to get a catheter inserted into his chest to allow for ease of infusion for meds and blood. This will stay in for 6 to 9 months, we get that on January 18, then on the 20th he is admitted to the hospital, and January 21, he begins the journey for the transplant. See, first they have to kill all the cells he does have, yes we are talking chemo here, we are sad about this, but it is what has to be done. He will get nuked for 6 days and then on what they call day 0, he will get the new transplanted cells infused into his body. These are smart super cells that migrate to the bone marrow and settle in to do their job in producing new cells. B will be monitored constantly to assess whether the cells are doing their job and if anything is causing problems. If all goes well he will be in the hospital for 3 weeks, best case scenario. He will be weak and have no immunities in his body, so they will fill him up with meds to suppress his immunity and try to guard against any infection. The immunity meds will continue for almost a year, as they make sure the new cells are working hard to produce good cells and that no rejection happens. So this is our prayer, that no rejections issues happen and that all the processes work as a best case scenario.
I know that was a lot, but there has been a lot to get us here. We so appreciate your prayers for B and our family.
Until next time,
Hopeful Believer
Well, it's a new year and many unique and mysterious things to look forward to. January is going to be a busy month for us, as B will be receiving his treatment for his condition. He has been on medication since March that was an attempt to get the blood producing, but after careful and hopeful monitoring it was determined that the blood was not producing at all. About 4 months ago he was entered into the MUD search, (Matching Unrelated Donor) for bone marrow. His brother, who was totally willing, was not a match, so this was the next step. You see, his transfusions are not quite keeping up....sometimes he goes in for blood in 9 days rather than 14 and a couple of times he has gotten 3 bags instead of the usual 2. We have seen this slow progression over a few months, so the news that came mid November that a match was found was the most exciting news! And not just any match this was a perfect match.
Donors in the registry provide blood cells that are typed for genetic markers. There are 5 that are in pairs for a total of 10. They look for a match range from 80 to100%. B's donor matches 100% on all 10 genetic markers! Yippee! One additional tidbit is that, there is a virus about 70% of the population walks around with. B does not have this virus in his body and neither does his donor, which just eliminates a complication.
Another wonderful blessing!
So, he needs to get a catheter inserted into his chest to allow for ease of infusion for meds and blood. This will stay in for 6 to 9 months, we get that on January 18, then on the 20th he is admitted to the hospital, and January 21, he begins the journey for the transplant. See, first they have to kill all the cells he does have, yes we are talking chemo here, we are sad about this, but it is what has to be done. He will get nuked for 6 days and then on what they call day 0, he will get the new transplanted cells infused into his body. These are smart super cells that migrate to the bone marrow and settle in to do their job in producing new cells. B will be monitored constantly to assess whether the cells are doing their job and if anything is causing problems. If all goes well he will be in the hospital for 3 weeks, best case scenario. He will be weak and have no immunities in his body, so they will fill him up with meds to suppress his immunity and try to guard against any infection. The immunity meds will continue for almost a year, as they make sure the new cells are working hard to produce good cells and that no rejection happens. So this is our prayer, that no rejections issues happen and that all the processes work as a best case scenario.
I know that was a lot, but there has been a lot to get us here. We so appreciate your prayers for B and our family.
Until next time,
Hopeful Believer
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