"Just the Facts"-- Got more blood today, said good bye to the Sharp infusion nurses.
The nurses at Sharp are very kind people. They see patients at their worst, in pain or just feeling blah and maybe depressed and yet, they don't withhold an ounce of care to their patients. They are upbeat, but in a sensitive way, efficient, gentle and yet ever the professional, monitoring their patients vitals for any issues.
It was nice to be cared for in such a genuine manner. We don't know for sure, but we may not need to return to the Sharp infusion center, so today was significant. As we head toward transplant, the BMT center will care for B's future infusion needs until he is released from their care. They tell us that we should not worry or be surprise if B should need additional infusions, as it will take a while for full production to be in gear. This is something we whole heartily look forward to. Oh, I should mention that once things are back on track with blood production and volume his spleen should shrink back to normal size. (OK Mom!)
These last few days, we will try to take care of the loose ends and have some family time before this process begins. We know it will be longer than we expect and will be hard to go through, but it will be worth it if it means that B can live normally again. He will always be a transplant patient from this point on.
So life will change for us, but when doesn't life change? I think it way always intended to change so that we would continue to grow and learn. The older I get the more I realize that we need more grace in our lives. We are given plenty grace from above, but we need to learn to extend it to others. When things go amiss in relationships, it is usually because grace is missing. During this admittedly difficult year, I am going to do my best to be graceful and to extend grace. Hope I am successful.
Until next time,
Hopeful Believer
Friday, January 14, 2011
Thursday, January 13, 2011
Jan 13, Final Doc Visit
"Just the Facts"-- Feeling very tired, not sure why, but presume it is becasue the blood is low again.
Well B got to visit with "the specialist" today, this time without Karen. That was big! Guess he thought B was vunerable as he actually sat next to B and was very personable. This guy sees people dying every day and has been very reserve and cool with us at every visit, go figure! I was glad he was this way with B today, so it was easier to be there without me. We got the green light, so everything is a go.
Most people never ever have any interaction with their spleen. Some people can have it removed and have it not phased them. My understanding of the spleens job is to regulate the blood flow and balance of blood cells in the body. The spleen is normally the size of a large egg. B has an enlarged spleen due to all the work it has had to do over the year. It was the width of a hand last February and had dropped down below the rib cage, now it is double the width of a hand. eeeeek! We are excited to be going in next week.
B will be have another transfusion tomorrow. I know, he just had one on Monday, that's 4 bags in one week. See what I mean, we need this transplant! We are trying to get him to a 9 when he goes into the hospital. It will be a stretch as he is at a 7.3 now. If you wouldn't mind, he would like prayer for the procedure on Tuesday. He has to have a central line placed in his chest. This will be for ease in infusing him with meds, chemo, blood and anything else they want to put in him. He is a little nervous about this one. Really he hasn't every had any hospital procedures before. Guess we won't be saying that anymore after this year is over! Thank you again for all your care and concern for him, it is so uplifting and blesses us so.
Until next time,
Hopeful Believer
Well B got to visit with "the specialist" today, this time without Karen. That was big! Guess he thought B was vunerable as he actually sat next to B and was very personable. This guy sees people dying every day and has been very reserve and cool with us at every visit, go figure! I was glad he was this way with B today, so it was easier to be there without me. We got the green light, so everything is a go.
Most people never ever have any interaction with their spleen. Some people can have it removed and have it not phased them. My understanding of the spleens job is to regulate the blood flow and balance of blood cells in the body. The spleen is normally the size of a large egg. B has an enlarged spleen due to all the work it has had to do over the year. It was the width of a hand last February and had dropped down below the rib cage, now it is double the width of a hand. eeeeek! We are excited to be going in next week.
B will be have another transfusion tomorrow. I know, he just had one on Monday, that's 4 bags in one week. See what I mean, we need this transplant! We are trying to get him to a 9 when he goes into the hospital. It will be a stretch as he is at a 7.3 now. If you wouldn't mind, he would like prayer for the procedure on Tuesday. He has to have a central line placed in his chest. This will be for ease in infusing him with meds, chemo, blood and anything else they want to put in him. He is a little nervous about this one. Really he hasn't every had any hospital procedures before. Guess we won't be saying that anymore after this year is over! Thank you again for all your care and concern for him, it is so uplifting and blesses us so.
Until next time,
Hopeful Believer
Wednesday, January 12, 2011
Jan 12, Last day of Work
"Just the Facts"-- Was able to write (steno) supremely well, but crashed at the end of the day, just not enough steam.
Some of you may not know but B will not be able to work for some time to come. The recovery from having your cells annihilated and then have to produce from scratch while keeping rejection at bay is a formidable task for the body to work at. The fatigue and weakness will take a long time to overcome. They say any where in the 6 to 9 month range, hopefully. So it was a strange thing for B today to go to his deposition and know it was the last for many many months. He felt good at his craft, but the endurance has ebbed a bit, having been so low last week and being out for the last 2 months with the dragon in his throat. He had a slight chuckle as his deposition was just feet away from where he will be in the hospital. Seems like things are in some way always a preparation of sorts.
We are now taking every precaution to make sure B does not get sick. That would postpone everything and that just cannot happen. So the pressure is on all of us to stay well and keep away from anyone who is ill. That is not all that easy with all the flu bugs going around. So I guess you could add that as a specific prayer, to stay well for the next week. I guess the same could be said for his donor.
Many people have asked how they can help. Well I have given that quite a bit of thought. There are a lot of restrictions we have to work within. While he is in the hospital, there really won't be much need. But I am told no plants or florals allowed. Cards are acceptable, jokes, an e-mail a day, an encouraging word. I was thinking a vocab word a day (cure for Chemo brain), If anyone has a surf movie to lend, that would be cool. It's simple things that will work. When he gets home, well that will be another story and I will provide a list of things that would be a help and much appreciated. But the most favored help is prayer.
Until next time,
Hopeful Believer
Some of you may not know but B will not be able to work for some time to come. The recovery from having your cells annihilated and then have to produce from scratch while keeping rejection at bay is a formidable task for the body to work at. The fatigue and weakness will take a long time to overcome. They say any where in the 6 to 9 month range, hopefully. So it was a strange thing for B today to go to his deposition and know it was the last for many many months. He felt good at his craft, but the endurance has ebbed a bit, having been so low last week and being out for the last 2 months with the dragon in his throat. He had a slight chuckle as his deposition was just feet away from where he will be in the hospital. Seems like things are in some way always a preparation of sorts.
We are now taking every precaution to make sure B does not get sick. That would postpone everything and that just cannot happen. So the pressure is on all of us to stay well and keep away from anyone who is ill. That is not all that easy with all the flu bugs going around. So I guess you could add that as a specific prayer, to stay well for the next week. I guess the same could be said for his donor.
Many people have asked how they can help. Well I have given that quite a bit of thought. There are a lot of restrictions we have to work within. While he is in the hospital, there really won't be much need. But I am told no plants or florals allowed. Cards are acceptable, jokes, an e-mail a day, an encouraging word. I was thinking a vocab word a day (cure for Chemo brain), If anyone has a surf movie to lend, that would be cool. It's simple things that will work. When he gets home, well that will be another story and I will provide a list of things that would be a help and much appreciated. But the most favored help is prayer.
Until next time,
Hopeful Believer
Tuesday, January 11, 2011
Jan 11, Pretty Nice Day
"Just the Facts"-- It was a pretty nice day, a little tired but feeling the most normal in a long time.
Nice to have a few normal feeling days, before that will go away for a while. Something to cherish and not take for granted. Good day to enjoy some of the simple things in life....coffee with a daughter, solitude at the beach for a wave check, great dinner with dear friends. In the midst of this crazy time, it is always good to count your blessings. Sometimes they get all covered up with the stresses and trials of the current issues, but if you look for them, they are there. I think it was another great day that we were carried by prayers.
I can't say enough about how wonderful it has been to be prayed for continually. There are several things that should be really freaking us out, but just aren't. So I know that is the peace of God surrounding us from the prayers of the faithful! Bless you each and every one. And I hope this is an encouragement to you to prayer for others that may need it as well. Prayer has power and can be felt. It is an action that anyone can do on behalf of another, if your heart is willing.
Until next time,
Hopeful Believer
Nice to have a few normal feeling days, before that will go away for a while. Something to cherish and not take for granted. Good day to enjoy some of the simple things in life....coffee with a daughter, solitude at the beach for a wave check, great dinner with dear friends. In the midst of this crazy time, it is always good to count your blessings. Sometimes they get all covered up with the stresses and trials of the current issues, but if you look for them, they are there. I think it was another great day that we were carried by prayers.
I can't say enough about how wonderful it has been to be prayed for continually. There are several things that should be really freaking us out, but just aren't. So I know that is the peace of God surrounding us from the prayers of the faithful! Bless you each and every one. And I hope this is an encouragement to you to prayer for others that may need it as well. Prayer has power and can be felt. It is an action that anyone can do on behalf of another, if your heart is willing.
Until next time,
Hopeful Believer
Monday, January 10, 2011
Jan 10, Re-fueled
"Just the Facts"-- Infusion today, 2 bags-back up to 8.3 level. Took all day
to feel the effects of being refuled.
Most of you don't know, but to be infused with one bag of blood in the infusion center takes about 2.5 hours, and this is the fast track speed. So 2 bags take about 5 hours and then add 1 more watch/recovery hour before you are cleared to leave. You also are given benedryl for any adverse reaction and tested for fever and blood pressure every 20 minutes. You also have to be cross matched and typed up to 3 days prior to the infusion. What I am trying to say is that there is quite a time committment to the process. B has been doing this about every 2 weeks for the last 10 months. After all this, today, he is only at an 8.3 level. Most hospitals will infuse patients that are at a level 8. Anything below catches everyones attention. B has been operating the last year averaging between 7 to 8 for most of the time. We really feel that this transplant timing could not have been timed any better. He will get another infusion this Friday so that he will be above a 9 when he goes in. This will be good to help with the Chemo.
He was hoping to go surfing before going in, but the possibility of catching something is too risky at this point, so tomorrow he will clean his boards and prepare them to be tucked away for a bit. B has always taken great care of his equipment. It will be one of those symbolic meaningful days for him. He also will most likely hopefully work his last job this week for quite some time. A sort of transition week if you think about it.
I have always thought that life was a series of phases or seasons if you like. The nice thing about a bad or tough season is that the nature of seasons have a beginning and an end. This concept of life gives you hope for the future and endurance to make it through to the next season yet to come. So as we knowingly prepare for this next difficult season, keeping in our minds and hearts that it will eventually come to and end and a whole new season will be before us once again. At times I think I would like to hurry away the tough stuff, but I have found that it is during those times that the learning really takes place. So we will face each day as it comes, knowing we are not alone and that we are being held by our right hands.
Until next time,
Hopeful Believer.
to feel the effects of being refuled.
Most of you don't know, but to be infused with one bag of blood in the infusion center takes about 2.5 hours, and this is the fast track speed. So 2 bags take about 5 hours and then add 1 more watch/recovery hour before you are cleared to leave. You also are given benedryl for any adverse reaction and tested for fever and blood pressure every 20 minutes. You also have to be cross matched and typed up to 3 days prior to the infusion. What I am trying to say is that there is quite a time committment to the process. B has been doing this about every 2 weeks for the last 10 months. After all this, today, he is only at an 8.3 level. Most hospitals will infuse patients that are at a level 8. Anything below catches everyones attention. B has been operating the last year averaging between 7 to 8 for most of the time. We really feel that this transplant timing could not have been timed any better. He will get another infusion this Friday so that he will be above a 9 when he goes in. This will be good to help with the Chemo.
He was hoping to go surfing before going in, but the possibility of catching something is too risky at this point, so tomorrow he will clean his boards and prepare them to be tucked away for a bit. B has always taken great care of his equipment. It will be one of those symbolic meaningful days for him. He also will most likely hopefully work his last job this week for quite some time. A sort of transition week if you think about it.
I have always thought that life was a series of phases or seasons if you like. The nice thing about a bad or tough season is that the nature of seasons have a beginning and an end. This concept of life gives you hope for the future and endurance to make it through to the next season yet to come. So as we knowingly prepare for this next difficult season, keeping in our minds and hearts that it will eventually come to and end and a whole new season will be before us once again. At times I think I would like to hurry away the tough stuff, but I have found that it is during those times that the learning really takes place. So we will face each day as it comes, knowing we are not alone and that we are being held by our right hands.
Until next time,
Hopeful Believer.
Sunday, January 9, 2011
Jan 9, Sunday A day of Rest
"Just the Facts"-- We pushed a bit today and were able to be up and around, then crashed the rest of the day. But it was worth the push. Infusion tomorrow, yea!
We visited some dear friends today, and because we have known them so long and so well it was like we had seen them every day for years. Some friends are just like that! It was a special time and meant a lot.
We have been so blessed by prayers, and friend's words of encouragement and genuine care and concern. It is overwhelming at times, and brings a random smile to our faces at other times. I think the most important part is that each one makes some type of connection and lets you know you are not alone going through this challenge. That support provides strength and encouragement to carry on, even when it gets hard to do just that.
We were recently informed that B's donor had supplied some blood for testing prior to the actual donation of super cells, so that all kinds of potential problems could be eliminated. Then we were also told that the donor would come back a second day and provide a second batch of super cells to have in storage in case they would need them or if some hiccup occurred in the process, they would be there. We were amazed and touched by this act of going above and beyond the normal request. The bible would call this person a "second miler". Someone that doesn't just go the requested distance, but goes well beyond what is called or asked for. I don't know about you but I want to be known as a second miler!
Until next time.
Hopeful Believer
We visited some dear friends today, and because we have known them so long and so well it was like we had seen them every day for years. Some friends are just like that! It was a special time and meant a lot.
We have been so blessed by prayers, and friend's words of encouragement and genuine care and concern. It is overwhelming at times, and brings a random smile to our faces at other times. I think the most important part is that each one makes some type of connection and lets you know you are not alone going through this challenge. That support provides strength and encouragement to carry on, even when it gets hard to do just that.
We were recently informed that B's donor had supplied some blood for testing prior to the actual donation of super cells, so that all kinds of potential problems could be eliminated. Then we were also told that the donor would come back a second day and provide a second batch of super cells to have in storage in case they would need them or if some hiccup occurred in the process, they would be there. We were amazed and touched by this act of going above and beyond the normal request. The bible would call this person a "second miler". Someone that doesn't just go the requested distance, but goes well beyond what is called or asked for. I don't know about you but I want to be known as a second miler!
Until next time.
Hopeful Believer
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