"Just the Facts"-- Very tired, slept most the day, thinking is hard, trying to find just the right liquid to drink. No chemo today.
We have been married 34 years today. We have had a great time and are still so in love with each other. I am looking forward to 34 more years! It's doable, we got married young. I was at the hospital today to see B eat both his lunch and his dinner. Although it is becoming more difficult to find something to eat that will go down and stay down, he managed on both meals. He doesn't eat a lot and really isn't hungry but it is better to have some food in the tummy to help with all those meds roaming around. He slept the rest of the time I was there, which I was very glad for. I have seen interrupted sleep so many times, that you don't know if it is day or night, your sleep schedule is all out of whack. So some good long sessions of sleep were a welcomed gift. When I say long session, that is like 2 hours at a time.
One of the chemo cocktails B was given was directed at fast recurring cells. These are in the mouth, esophagus and stomach. When these cells are killed the cells begin to sluff off. That process will begin to disturb the digestive track. So the next few days B will start declining in how he feels as the effects of the chemo begin to manifest. Nausea is already hanging just under the surface. We are watching to see what happens to his hair, but we are expecting to get a new hair do very soon. We know this just comes with the territory, so we will deal with it when it gets here. The next 2 weeks with reveal a lot of things going on with B. They will be monitoring him every day for various developments. We are hoping for good responses as the new super cells set up house in B's body.
Until next time.
Hopeful Believer
Saturday, January 29, 2011
Jan 28, Eve Day +1 Starting the climb
"Just the Facts"-- Feeling very weak, tired, but hard to get good sleep. No immunity at all.
Full of fluids.
So I mentioned about how the transplant went very well. No reactions to the infusion of new cells. We need to get rid of some fluid so that was the activity of the day. We now begin a new regimen of low dose Chemo for the next several days. This is meant to continue to maintain no immunities and beef up anti rejection ability for the new cells. They tell us the next few days B will begin to feel the effects of the chemo. Food already doesn't sound good, taste good, soon it won't feel good. In the next few days we may not be able to handle nausea that is sure to be there. Also they take precautions and provide anti-biotics on drip. Any type of virus B is exposed to he will catch. So we have to take extreme caution that we are not near anyone ill. This is hard to do during cold/flu season. I am told he is just as susceptible before and after a cold as during a cold. They continue to check his blood levels and he will most likely get more blood in the night. Of course all new blood will be O neg his new blood type.
I reported a few days back about the amount of type A neg blood B still has in his body, even though they have been pumping him with O neg for over a month and half. So they have decided to do what is called a blood exchange. The will pump out all the A neg blood and pump in O neg blood. They wait a few days after the transplant to make sure the O super cells get fully in and established. But they may not be working just yet. This procedure uses the same premise as what the donor went through, actually it uses the very same type of blood collection machine. The only bummer is that they cannot use B's catheter to withdraw the blood, something about the tube not being big enough. They have to use an IV, but the clincher is the needle is an extremely large gauge needle. Sorry to all those needle phobia folks out there. B recalls earlier in the year a man was poked with this type of needle, he screamed and ran out of infusion. Of course he later came back. What choice did he have. This procedure is scheduled for Monday. The science of all this is just so amazing. Still we are all individuals and everyone responds differently. This is where the prayer comes in, and we desire this prayer on our behalf. We fully believe that things have gone so well because of it.
Until next time.
Hopeful Believer.
Full of fluids.
So I mentioned about how the transplant went very well. No reactions to the infusion of new cells. We need to get rid of some fluid so that was the activity of the day. We now begin a new regimen of low dose Chemo for the next several days. This is meant to continue to maintain no immunities and beef up anti rejection ability for the new cells. They tell us the next few days B will begin to feel the effects of the chemo. Food already doesn't sound good, taste good, soon it won't feel good. In the next few days we may not be able to handle nausea that is sure to be there. Also they take precautions and provide anti-biotics on drip. Any type of virus B is exposed to he will catch. So we have to take extreme caution that we are not near anyone ill. This is hard to do during cold/flu season. I am told he is just as susceptible before and after a cold as during a cold. They continue to check his blood levels and he will most likely get more blood in the night. Of course all new blood will be O neg his new blood type.
I reported a few days back about the amount of type A neg blood B still has in his body, even though they have been pumping him with O neg for over a month and half. So they have decided to do what is called a blood exchange. The will pump out all the A neg blood and pump in O neg blood. They wait a few days after the transplant to make sure the O super cells get fully in and established. But they may not be working just yet. This procedure uses the same premise as what the donor went through, actually it uses the very same type of blood collection machine. The only bummer is that they cannot use B's catheter to withdraw the blood, something about the tube not being big enough. They have to use an IV, but the clincher is the needle is an extremely large gauge needle. Sorry to all those needle phobia folks out there. B recalls earlier in the year a man was poked with this type of needle, he screamed and ran out of infusion. Of course he later came back. What choice did he have. This procedure is scheduled for Monday. The science of all this is just so amazing. Still we are all individuals and everyone responds differently. This is where the prayer comes in, and we desire this prayer on our behalf. We fully believe that things have gone so well because of it.
Until next time.
Hopeful Believer.
Friday, January 28, 2011
Jan 28, Day Zero again! Happy Birthday!
"Just the Facts"-- Got new super stem cells infused middle of the night, Its his Birthday. Feeling ok, weak and a little discomfort but all in all doing well.
Happy Birthday B, This is his real birhday as well and his new birthday. Is that amazing? This has been very intriguing for the hospital staff to realize that his new birthday is on his real birthday...they are tripping out over that one. The actual infusion went really well. They expect some headache, fever, or shakes, B didn't have any of that, all vitals presented really well. Being in the middle of the night he tried to sleep, but was awaken every 10 to 15 minutes to take vitals, that is how closely they monitor the infusion. So that was the only hard part. He is a bit puffy due to all the fluids they are pumping into him and that causes some discomfort, but really, that is not too hard considering all that is going on. The next 10 days will determine how these cell fare. The prayer will be to have the cells work their way to the bone marrow and start to produce and to not have B's existing cells not attack the new cells. We were really blessed to be at this place and time in our lives.
We have been blessed by so many people, B had a great visit yesterday from a dear friend. He got to sit in on a 5 doctor consult, so he got more for his money. Another great friend got my dishwasher working. I really needed that. I have had beautiful ladies walking our crazy dog, thank you! And there have been cards and gifts in the mail almost every other day. Some deliveries of gifts show up almost anywhere, even at the hospital. Some have provided meals to my girls! Great jokes and photos sent via e-mail. And I can't begin to tell you how many people are praying for us. That we could not go a day without. So a big THANK YOU to all. I do need to do a shout out to all about the opening today (a very good day) of El ReyTaco Shop over on Moraga. Be sure to stop by and get a taco and give our dear friend Victor a hug!
Well, we have come a long way, but we still have a long way to go to be out of the Woods, ha! So if you don't mind, please keep the prayers going, we deisre full health to the point of B getting in the surf again.
And a thank you to my co-workers and boss for their great support and understanding with my schedule during this time. They have been so great.
Until next time,
Hopeful Believer.
We have been blessed by so many people, B had a great visit yesterday from a dear friend. He got to sit in on a 5 doctor consult, so he got more for his money. Another great friend got my dishwasher working. I really needed that. I have had beautiful ladies walking our crazy dog, thank you! And there have been cards and gifts in the mail almost every other day. Some deliveries of gifts show up almost anywhere, even at the hospital. Some have provided meals to my girls! Great jokes and photos sent via e-mail. And I can't begin to tell you how many people are praying for us. That we could not go a day without. So a big THANK YOU to all. I do need to do a shout out to all about the opening today (a very good day) of El ReyTaco Shop over on Moraga. Be sure to stop by and get a taco and give our dear friend Victor a hug!
Well, we have come a long way, but we still have a long way to go to be out of the Woods, ha! So if you don't mind, please keep the prayers going, we deisre full health to the point of B getting in the surf again.
And a thank you to my co-workers and boss for their great support and understanding with my schedule during this time. They have been so great.
Until next time,
Hopeful Believer.
Thursday, January 27, 2011
Jan 27, the 7th day, a day of rest!
"Just the Facts"-- No Chemo, No Rabbit, No Blood, Just a bunch of liquids, anti-biotics and anti-rejection meds. Weak, but able to rest the day. New Cell in Transit.
Well, today was originally day zero. However the storm in the East caused a travel delay and re-directed the courier to a different route. I am happy to say that as of the now the cells have arrived. They are right now being processed for infusion. I am at home waiting for B to call me when they are ready to infuse. Hey, just go the call...got to go. I will write more tomorrow. Praise the Lord!
Hopeful Believer
Well, today was originally day zero. However the storm in the East caused a travel delay and re-directed the courier to a different route. I am happy to say that as of the now the cells have arrived. They are right now being processed for infusion. I am at home waiting for B to call me when they are ready to infuse. Hey, just go the call...got to go. I will write more tomorrow. Praise the Lord!
Hopeful Believer
Wednesday, January 26, 2011
Jan 26, Day -1 Made it!
"Just the Facts"-- Day 6 of chemo meds, all in all when well with the exception of Sunday. White count is low, getting weaker, and weaker and food has no appeal. Brain is a bit foggy. All to be expected.
My sister requested some pictures as she lives out of town, and this helps her to know more about how B is doing. I also added a picture of the "tube traffic jam". In this picture it has 7 bags hanging! B is trying to walk the halls as much as he can because after tomorrow, he will have to stay in his room always. No escaping. It takes a lot of energy to do 5 laps, but that is what he tries both in the early morning and later in the evening when there is not so much visitor traffic in the halls. He will be wearing a mask when out and about from now on for some time to come to keep all the germs out there at bay. All people around him will need to be fully healthy and not have been around anyone sick....So I think I have to keep my senior home from school for a bit as she says everyone is sick in her classes. ugh.
I may have mentioned earlier that during chemo they count the days down as negative days to day zero, which is transplant day also known as the "new birthday". When we were told the schedule I said wow, if only it could be delayed one day as his real birthday is the 28th. They said oh, well no, it will still be on the 27th. Today I got a call that the blizzard in Newark cause a delay, and the courier was rerouted to London, then from London to LAX, then a car will be waiting for transport to San Diego. It should arrive at about 6PM tomorrow the 27th. Then they have some lab work to do to prepare the blood and the end result of all this is that B will ultimately be getting his new donated cells infused early on the 28th.....his real Birthday! What are the chances of that? We certainly do know who is in control of this event, to the very last detail. What an amazing gift, new life on his birthday. If he had more energy he would be really super excited, but he is very happy that this is all going well. We have been so blessed in many ways. This is truly a gift, we recognize that the gift of life is a gift from above. B has been bless to have new life a few times over! He is certainly unique and I am blessed to be in his life.
Until next time.
Hopeful Believer
My sister requested some pictures as she lives out of town, and this helps her to know more about how B is doing. I also added a picture of the "tube traffic jam". In this picture it has 7 bags hanging! B is trying to walk the halls as much as he can because after tomorrow, he will have to stay in his room always. No escaping. It takes a lot of energy to do 5 laps, but that is what he tries both in the early morning and later in the evening when there is not so much visitor traffic in the halls. He will be wearing a mask when out and about from now on for some time to come to keep all the germs out there at bay. All people around him will need to be fully healthy and not have been around anyone sick....So I think I have to keep my senior home from school for a bit as she says everyone is sick in her classes. ugh.
I may have mentioned earlier that during chemo they count the days down as negative days to day zero, which is transplant day also known as the "new birthday". When we were told the schedule I said wow, if only it could be delayed one day as his real birthday is the 28th. They said oh, well no, it will still be on the 27th. Today I got a call that the blizzard in Newark cause a delay, and the courier was rerouted to London, then from London to LAX, then a car will be waiting for transport to San Diego. It should arrive at about 6PM tomorrow the 27th. Then they have some lab work to do to prepare the blood and the end result of all this is that B will ultimately be getting his new donated cells infused early on the 28th.....his real Birthday! What are the chances of that? We certainly do know who is in control of this event, to the very last detail. What an amazing gift, new life on his birthday. If he had more energy he would be really super excited, but he is very happy that this is all going well. We have been so blessed in many ways. This is truly a gift, we recognize that the gift of life is a gift from above. B has been bless to have new life a few times over! He is certainly unique and I am blessed to be in his life.
Until next time.
Hopeful Believer
Tuesday, January 25, 2011
Jan 25, Day -2 Almost there!
"Just the Facts"-- Currently B has 5 bags draining into him, he is a bit dingy and tired, but trying to stand and do twists and sit on the edge of the bed to keep from becoming a veg. So far today, handling the chemo well.
As I mentioned before the catheter B has in him has 3 lumens. One is reserved for some special medicine and cannot be used for anything else. Once they use it for this special medicine it becomes contaminated for all the rest. So that really only leaves 2 functioning lumens. Well, I am fully impressed by the creativity of the medical field as they have figured out a way to have multiple bags of meds all infuse into those 2 lumens, by connecting the tubes at different levels before it gets to B. It actually looks like a tube traffic jam! One bag's tube even honks it horn every now and again, because it gets some air blocking the way. B is handling all this medical attention very well, although he does have a mild anxiety med in him, but that is mostly for the chemo. He has the attention of the doctors as we are getting close to transplant day and they are measuring the amount of blood type A neg versus O neg. B has been getting O neg since mid December, actually he has had as of today (2 bags today as a matter of fact) 14 bags all together. But the quirk is that he still has a lot of A neg in him. He is a conundrum. Of course, I have always known this! Well as I am sitting here typing, the special med for that one lumen I just wrote about above, is being added to his tube. So now we have 6 bags in traffic. This drug will help assist with anti-rejection and will run every day 24/7. They will continuously check the level of this drug to make sure confusion does not set in....oooops might be a little too late. I have one correction from yesterdays blog....the rabbit meds are not for immunity, but anti-rejection. So back to the too much A neg....there is a plan for this and I will allude to it in a few days.
B had a new visitor today, it was very special. Our other daughter made it in, in the morning with her sister before the (meds bag) traffic got too bad. This is very hard on them. They love their dad so much, as he is their bud. They are trying to be strong but I can see where with just a look, they will become emotional. It is never easy seeing someone you care about deeply having medical difficulties. I just learned of a dear friend who lost their dad this past week. My heart goes out to this family. God made us to be sensitive and emotional, to be able to care about others. That is what He intended for us. It is not a sign of weakness to be tender, but rather a place where you can receive what He and others can provide. Like grace or comfort or kindness and hugs, even forgiveness. I got a hug just the other day from a sweet girl who felt I needed it. If you see my girls, will you send a hug their way? I would greatly appreciate it.
Until next time,
Hopeful Believer.
As I mentioned before the catheter B has in him has 3 lumens. One is reserved for some special medicine and cannot be used for anything else. Once they use it for this special medicine it becomes contaminated for all the rest. So that really only leaves 2 functioning lumens. Well, I am fully impressed by the creativity of the medical field as they have figured out a way to have multiple bags of meds all infuse into those 2 lumens, by connecting the tubes at different levels before it gets to B. It actually looks like a tube traffic jam! One bag's tube even honks it horn every now and again, because it gets some air blocking the way. B is handling all this medical attention very well, although he does have a mild anxiety med in him, but that is mostly for the chemo. He has the attention of the doctors as we are getting close to transplant day and they are measuring the amount of blood type A neg versus O neg. B has been getting O neg since mid December, actually he has had as of today (2 bags today as a matter of fact) 14 bags all together. But the quirk is that he still has a lot of A neg in him. He is a conundrum. Of course, I have always known this! Well as I am sitting here typing, the special med for that one lumen I just wrote about above, is being added to his tube. So now we have 6 bags in traffic. This drug will help assist with anti-rejection and will run every day 24/7. They will continuously check the level of this drug to make sure confusion does not set in....oooops might be a little too late. I have one correction from yesterdays blog....the rabbit meds are not for immunity, but anti-rejection. So back to the too much A neg....there is a plan for this and I will allude to it in a few days.
B had a new visitor today, it was very special. Our other daughter made it in, in the morning with her sister before the (meds bag) traffic got too bad. This is very hard on them. They love their dad so much, as he is their bud. They are trying to be strong but I can see where with just a look, they will become emotional. It is never easy seeing someone you care about deeply having medical difficulties. I just learned of a dear friend who lost their dad this past week. My heart goes out to this family. God made us to be sensitive and emotional, to be able to care about others. That is what He intended for us. It is not a sign of weakness to be tender, but rather a place where you can receive what He and others can provide. Like grace or comfort or kindness and hugs, even forgiveness. I got a hug just the other day from a sweet girl who felt I needed it. If you see my girls, will you send a hug their way? I would greatly appreciate it.
Until next time,
Hopeful Believer.
Monday, January 24, 2011
Jan 24, Day -3 moving forward
"Just the Facts"-- Had a much better day today, tired but no crazy side effects, little loss of appetite and some weight loss, but OK.
Some have mentioned that they need a better understanding of the rabbit. The is actually a rabbit serum and it is used to help suppress immunity. They give this to help prevent the more serious disease of bone marrow transplant patients, which is called Graph versus Host. GVH is where they new Grafted cells fight with the Host. The side effects of this condition can range anywhere from slight to severe and beyond. The interesting thing is that if you get a slight case of GVH it actually helps the transplant patient do better in the long run. Go figure. The rabbit serum is the drug that gives you the worst flu in your life. Well I can attest that it's reputation is accurate. B had the highest fever all night last night. Higher than any time during the entire year. I can count the number of fevers he has had on one hand, really on only 3 fingers. And the threshold for fever has been 100.5. His fever last night was 102.8 He was on antibiotic drip, anti fever drip, Saline drip, when I left tonight they added a liquid drip to hydrate him in preparation for a 3rd cocktail to be administered tomorrow. This one is short, a 30 minute drip, but wipes out your month in a major way. It works on all the fast turn over cells like in your mouth and stomach. I didn't previously know this but if you get chemo on your skin it will burn you. So all the nurses put on preventative clothing and gloves to protect themselves when changing the bags/tubes. Yikes! So we have 2 more days to get through before day 0, called the new birthday.
Some of you are not aware but B will require 24 hour care for the first 100 days once released. So we have plans to engage our oldest daughter to assist with this care. She attended a Chemo Patient training with me tonight. Let me just say that anything medical is really not her gifting, so the fact that she is willing to do this is amazing and makes us so proud. There will be many new things she will be responsible for that will challenge her, but I know she will do a great job. She has a heart like her dad, and is very generous. It will actually take more that me and our daughter to get B everything he needs. His brother and my mom will also be recruited to assist us in weekly infusion center visits. B will have to go 3 times a week for at least 100 days, then maybe taper off depending. What is that saying about it takes a village? I want to say a special thanks to a certain doggy care giver! She saved the day as well, helping with our tight schedule today! Yea for C.
Prayers were answered all around today, bless each of you.
Until next time,
Hopeful Believer.
Some have mentioned that they need a better understanding of the rabbit. The is actually a rabbit serum and it is used to help suppress immunity. They give this to help prevent the more serious disease of bone marrow transplant patients, which is called Graph versus Host. GVH is where they new Grafted cells fight with the Host. The side effects of this condition can range anywhere from slight to severe and beyond. The interesting thing is that if you get a slight case of GVH it actually helps the transplant patient do better in the long run. Go figure. The rabbit serum is the drug that gives you the worst flu in your life. Well I can attest that it's reputation is accurate. B had the highest fever all night last night. Higher than any time during the entire year. I can count the number of fevers he has had on one hand, really on only 3 fingers. And the threshold for fever has been 100.5. His fever last night was 102.8 He was on antibiotic drip, anti fever drip, Saline drip, when I left tonight they added a liquid drip to hydrate him in preparation for a 3rd cocktail to be administered tomorrow. This one is short, a 30 minute drip, but wipes out your month in a major way. It works on all the fast turn over cells like in your mouth and stomach. I didn't previously know this but if you get chemo on your skin it will burn you. So all the nurses put on preventative clothing and gloves to protect themselves when changing the bags/tubes. Yikes! So we have 2 more days to get through before day 0, called the new birthday.
Some of you are not aware but B will require 24 hour care for the first 100 days once released. So we have plans to engage our oldest daughter to assist with this care. She attended a Chemo Patient training with me tonight. Let me just say that anything medical is really not her gifting, so the fact that she is willing to do this is amazing and makes us so proud. There will be many new things she will be responsible for that will challenge her, but I know she will do a great job. She has a heart like her dad, and is very generous. It will actually take more that me and our daughter to get B everything he needs. His brother and my mom will also be recruited to assist us in weekly infusion center visits. B will have to go 3 times a week for at least 100 days, then maybe taper off depending. What is that saying about it takes a village? I want to say a special thanks to a certain doggy care giver! She saved the day as well, helping with our tight schedule today! Yea for C.
Prayers were answered all around today, bless each of you.
Until next time,
Hopeful Believer.
Sunday, January 23, 2011
Jan 23, -4 rough seas ahead
"Just the Facts"-- No blood today, yea but chemo then chased by the rabbit, the rabbit won!
First, let me just say I am writing this on an iPad in B's hospital room. So please forgive any errors, this is tricky for someone who can type. Wow, what a day, and it is not over yet. B did not need any blood today which was a mental relief after having 4units in two days. The morning went great with daughter #1 showing up to share coffee time and a movie. This allowed me to stay home and catch up on a few things at home. I arrived at 11am and in time to see chemo complete, lunch and then the bummer bag of juice. As I sit and type there is still an hour drip to go before it is done. I said at the beginning of this blog that going through this treatment is like going through hell and back. Well I saw a glimpse of hell today. And after today we have 3more days of this. I am glad I was here as when someone is that sick it takes an army to care for them. Things have settled in this last hour but that is after stopping the rabbit twice and giving all kinds of preventative and coping drugs.B has never been so drugged in his life.
The rabbit meds are given as a preventative medication for transplant patients. There is a common disease that they can get which is pretty bad and can prevent the new cells from grafting. So this is a case of the worser of two evils. At least the nursing staff did,nt see me as a threat and allowed me to pitch in and help. B was comforted by my being here. I wouldn't want to do this alone either. I know that many dear people were praying today and I will forever be grateful to each and everyone of you.
I was also encouraged today by a few words from a devotion..."rejoice in my love for you which has no limits or condition. ...I will never leave you or forsake you...the light of my presence filters through you to bless others...your weakness and woundedness are the openings throughout which the Light of the knowledge of Glory shines forth.". While I was reading this after a particular tough session the sunlight was shining through the shade as a filter right across B's entire body. It was very cool and gave me much hope. I felt that we were not alone through this tough day.
Until next time,
Hopeful Believer
First, let me just say I am writing this on an iPad in B's hospital room. So please forgive any errors, this is tricky for someone who can type. Wow, what a day, and it is not over yet. B did not need any blood today which was a mental relief after having 4units in two days. The morning went great with daughter #1 showing up to share coffee time and a movie. This allowed me to stay home and catch up on a few things at home. I arrived at 11am and in time to see chemo complete, lunch and then the bummer bag of juice. As I sit and type there is still an hour drip to go before it is done. I said at the beginning of this blog that going through this treatment is like going through hell and back. Well I saw a glimpse of hell today. And after today we have 3more days of this. I am glad I was here as when someone is that sick it takes an army to care for them. Things have settled in this last hour but that is after stopping the rabbit twice and giving all kinds of preventative and coping drugs.B has never been so drugged in his life.
The rabbit meds are given as a preventative medication for transplant patients. There is a common disease that they can get which is pretty bad and can prevent the new cells from grafting. So this is a case of the worser of two evils. At least the nursing staff did,nt see me as a threat and allowed me to pitch in and help. B was comforted by my being here. I wouldn't want to do this alone either. I know that many dear people were praying today and I will forever be grateful to each and everyone of you.
I was also encouraged today by a few words from a devotion..."rejoice in my love for you which has no limits or condition. ...I will never leave you or forsake you...the light of my presence filters through you to bless others...your weakness and woundedness are the openings throughout which the Light of the knowledge of Glory shines forth.". While I was reading this after a particular tough session the sunlight was shining through the shade as a filter right across B's entire body. It was very cool and gave me much hope. I felt that we were not alone through this tough day.
Until next time,
Hopeful Believer
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