"Just the Facts"-- Got more blood and some platelets today, major pain all night, no sleep, physical therapy exercises, now totally exhausted.
Well I am seeing quite a change from yesterday or the day before. B is one very exhausted man. The pain is still very high and hard to keep at bay, even with all the drugs. The lack of sleep this catching up and he is punchy and looks it. He can't remember things and repeats things and can't sit in a chair for longer than 10 minutes, then needs to do the unthinkable, lay down in the bed. So the big decision before going to bed is trying to determine the best medicine cocktail to get sleep and avoid pain. His appetite decreased a bit today as well. All in all not a better day. We are praying for some sleep tonight. I gave him a very gentle back/hip rub for a couple of hours with intermittent breaks just to allow circulation and soothing to the aching areas. Of course the pain is so deep, it didn't really help, but allowed him to relax a bit. Everything is so sensitive, you have to be very careful with him. With platelets so low you don't want to risk any break in the skin. The hematoma from yesterday gave way to an arm length bruise. He can compete with any of my Mom's bruises, and that is saying a lot! Right Mom?
B will get 2 more bags of blood and a bag of platelets again tomorrow. We will probably repeat this continually until the numbers start to move. This is what we are anticipating. I have always felt that this blood activity is in the creation zone. I know Who is in charge of this area, and I trust that He knows best, the work that needs to be done. So we will wait on Him and Know that He is busy working His plan.
One of our nurses, who we just met, turned out to be a daughter of some friends of ours who have also been praying for us. The nurse, herself, had been praying for B, from a pray list he was on. She had never met us before. Isn't that just the Lord, to sent you gifts when things get tough, just so you can Know He is still working on your behalf. Once again, we are so thankful for all the prayers.
Until next time,
Hopeful Believer.
Friday, February 4, 2011
Thursday, February 3, 2011
Feb 3, Day +7, Waiting on the numbers.
"Just the Facts"-- Another torturous night of no sleep due to pain. Trying to stay out of that bed for as much as he can. But doing better with food and not quite as foggy in the head.
So various Doctors have been in to check on B and the issue he is having with his pain. Skeletal muscular some think, some think the rabbit serum, but the big D, his specialist says that he just isn't one to be in bed and should be out on his board. B liked that. His Doctor is a surfer himself, however limited due to time constraints, but when visiting B, never fails to comment on the really nice picture B has in his room of him surfing. My brother in law took the shot, a great photographer, and it captures the Doctor sight every time. He mentioned that he would like a shot of himself like that! Anyway it was nice for B to find some common ground with this well known Doctor that wasn't medical.
B seems to me to be handling things a bit better. Now the course is to watch those blood counts start to rise. To that end he got his first injection of the rejuvenator. A type of catalyst if you will. This will come along side those super cells and give them a boost in the production center work. We won't start to see activity yet, but they say around day +11 or +12 something should start showing. Then the counts should grow exponentially once they begin to show. The only bummer is the shot, however little, burns when injected. Today for his first shot, he immediately got a hematoma where the injection was. This is primarily due to the low platelets. So his next shot will have to go in the tummy. ugh. So, one more new phase to wrestle with. But this is the beginning of the end of the hospital. Once his numbers begin to rise and sustain themselves and everything else stays under control, then home becomes a real possibility. Keep in mind this is still at least a week or more away, but that thought is still very nice. A prayer would be that he can handle these shots daily, and that they would perform as intended and help the super cells get to work. Also a good night sleep would go a long way!
until next time,
Hopeful Believer.
So various Doctors have been in to check on B and the issue he is having with his pain. Skeletal muscular some think, some think the rabbit serum, but the big D, his specialist says that he just isn't one to be in bed and should be out on his board. B liked that. His Doctor is a surfer himself, however limited due to time constraints, but when visiting B, never fails to comment on the really nice picture B has in his room of him surfing. My brother in law took the shot, a great photographer, and it captures the Doctor sight every time. He mentioned that he would like a shot of himself like that! Anyway it was nice for B to find some common ground with this well known Doctor that wasn't medical.
B seems to me to be handling things a bit better. Now the course is to watch those blood counts start to rise. To that end he got his first injection of the rejuvenator. A type of catalyst if you will. This will come along side those super cells and give them a boost in the production center work. We won't start to see activity yet, but they say around day +11 or +12 something should start showing. Then the counts should grow exponentially once they begin to show. The only bummer is the shot, however little, burns when injected. Today for his first shot, he immediately got a hematoma where the injection was. This is primarily due to the low platelets. So his next shot will have to go in the tummy. ugh. So, one more new phase to wrestle with. But this is the beginning of the end of the hospital. Once his numbers begin to rise and sustain themselves and everything else stays under control, then home becomes a real possibility. Keep in mind this is still at least a week or more away, but that thought is still very nice. A prayer would be that he can handle these shots daily, and that they would perform as intended and help the super cells get to work. Also a good night sleep would go a long way!
until next time,
Hopeful Believer.
Wednesday, February 2, 2011
Feb 2, Day +6, Got the clock fixed
"Just the Facts"-- Painful night of sleep once again. Pain meds have been doubled, 2 more bags of blood and 2 bags of platelets made for a busy and wearisome day, but felt good enough to eat!
Of all the things that have been bothering B, and there is quite a list as you can imagine, the biggest issue was the battery in the wall clock was running out. So he has been for the last couple of days always asking me the time. See he could not bring his watch, (a staple on his wrist, usually) and the clock just didn't seem to keep up with the TV at times. He knew something was off, but chemo brain kept him from figuring it all out. We finally had a break through late yesterday and got new batteries for the clock. Whew, glad that little crisis is over. See this little room is his world right now and he likes to have everything just so. I have seen that trait fade a bit in the last week, as things got foggy and weak, but today the correct time was all important. To me that was a huge improvement over the last few days. Even though there was still pain and lots of additives to him, he was eating and sitting up longer, 18 minutes over 10! I will gladly take these little signs of improvement and say thank you.
We have a day 6 round of low dose chemo tonight, again this is just for maintenance to keep both immunity down and anti rejection in force. I am told that he will need more blood and more platelets tonight, so sleep will be something he will long for. Hopefully he will get a sleep aid, something we have forgotten the last week and that may help with everything. By tomorrow B will have been in the hospital for 2 weeks, I can't believe that. Sometimes it seems like just yesterday we were anticipating this phase, and other times it seems he has been here for a year. We will all be glad when he is well enough to return home into our care. That means he will be out of pain, able to sleep and not need blood in the middle of the night. He sure has been a good patient for the staff here. I think they all really like him. And so do I.
Until next time,
Hopeful Believer.
We have a day 6 round of low dose chemo tonight, again this is just for maintenance to keep both immunity down and anti rejection in force. I am told that he will need more blood and more platelets tonight, so sleep will be something he will long for. Hopefully he will get a sleep aid, something we have forgotten the last week and that may help with everything. By tomorrow B will have been in the hospital for 2 weeks, I can't believe that. Sometimes it seems like just yesterday we were anticipating this phase, and other times it seems he has been here for a year. We will all be glad when he is well enough to return home into our care. That means he will be out of pain, able to sleep and not need blood in the middle of the night. He sure has been a good patient for the staff here. I think they all really like him. And so do I.
Until next time,
Hopeful Believer.
Tuesday, February 1, 2011
Feb 1, Day +5 More Sleeping Pain
"Just the Facts"-- B had another poor night, excruciating pain, waking you up several times in the night on two different kinds of strong paid meds, and still pain. Weak, hard to stand, but still trying.
So we knew this would get tough and it is getting more difficult every day, but we are hanging in there. It is hard to look at your bed, as the source of severe pain, when you are weak and nauseated and that is really the only place to hang out. B tries to sit in the side chair but after about 15 minutes he is too weak to continue sitting up. He just keeps trying to do the best he can. So we brought in the air bed and have a nausea drip now and pain meds on request. I tell him to keep eating, no matter how small. He's not hungry and the thought of food turns his stomach but he still did order some food and when it came he ate some. What a good patient. His platelet are going down, white count is down and red cells are low. So it is almost time to jump start the bone marrow. He will get some injections to get this going in a few days. The pain will return, (if we ever get rid of it) and even though it may hurt, it will translate into cell production and that is what all of this process was for.
Looking at the chart it looks like we only have 2 days of chemo treatments left. We are just now starting to see the effects of chemo. This is a process, a means to an end. We are checking the calendar and tracking the positive days to measure the progress. The hope is to be totally free from needing blood transfusions because B makes his own red blood cells. That's the goal and our hope. Thank you again for the prayers.
Until next time,
Hopeful Believer.
So we knew this would get tough and it is getting more difficult every day, but we are hanging in there. It is hard to look at your bed, as the source of severe pain, when you are weak and nauseated and that is really the only place to hang out. B tries to sit in the side chair but after about 15 minutes he is too weak to continue sitting up. He just keeps trying to do the best he can. So we brought in the air bed and have a nausea drip now and pain meds on request. I tell him to keep eating, no matter how small. He's not hungry and the thought of food turns his stomach but he still did order some food and when it came he ate some. What a good patient. His platelet are going down, white count is down and red cells are low. So it is almost time to jump start the bone marrow. He will get some injections to get this going in a few days. The pain will return, (if we ever get rid of it) and even though it may hurt, it will translate into cell production and that is what all of this process was for.
Looking at the chart it looks like we only have 2 days of chemo treatments left. We are just now starting to see the effects of chemo. This is a process, a means to an end. We are checking the calendar and tracking the positive days to measure the progress. The hope is to be totally free from needing blood transfusions because B makes his own red blood cells. That's the goal and our hope. Thank you again for the prayers.
Until next time,
Hopeful Believer.
Monday, January 31, 2011
Jan 31, Day +4 No blood to spare
"Just the Facts"-- Nauseated, in pain, and really feeling quite poorly, and then they take all my blood out.
But gave my 9 bags back.
Woke up at 5:40 to a call from the hospital. "Are you coming? I really don't feel good." B had new sleeping pain in the shoulder and was nauseated when I arrived. The blood exchange was delayed due to a doctor's schedule. I think I have entered a parallel universe with this blood exchange deal. It is amazing and kinda creepy all at the same time. This doesn't speak to what the patient is going through. But B is a trooper as you can see above. He has got needles and tubes in both arms and tubes still coming out from the catheter. First they begin the output blood (B's), once that gets going at an even rate, then the start the input blood. Keep in mind that the veins all have to work and maintain structure while the flow is passing through. They can speed up or slow down the flow depending on how the veins, pressure or patient is doing. But make sure you don't have to use the bathroom in this 2.5 hour procedure. Yikes, then it's a Broadway production. The input blood (new O neg) comes in small individual bags, so 9 in all. The output blood, (what B has inside his body) is all collecting into a giant 9 liter capacity bag hanging in the back. It is processed through a centrifuge, so the plasma is separated a bit. Whoa, biggest bag of blood I have ever seen! This is all done as a preventative move to help the new super cells. Once those cells set up house and begin production, they don't want any little type A cells trying to attack the new O cells. Remember they think they are defending their home territory. It's quite a production and frankly I am exhausted just watching it. I can't imagine how B is holding up. Thanks goodness for the new pillow and bed cushion we got yesterday, or today would have been just that much more uncomfortable.
The bible tells us that the Lord is our strength and our shield. He sets our day in motion and provides strength for what we have to endure. I can say that both B and I have leaned on His strength today and claim His protection and peace during this adventure. I am especially partial to this scripture, as it is a song that was given to me many years ago. Psalm 28:7 Thank you all again for your faithful prayers on our behalf. We are hoping to be able to cruise the balance of the day. At least that is what we are thinking...
Until next time,
Hopeful Believer.
But gave my 9 bags back.
The bible tells us that the Lord is our strength and our shield. He sets our day in motion and provides strength for what we have to endure. I can say that both B and I have leaned on His strength today and claim His protection and peace during this adventure. I am especially partial to this scripture, as it is a song that was given to me many years ago. Psalm 28:7 Thank you all again for your faithful prayers on our behalf. We are hoping to be able to cruise the balance of the day. At least that is what we are thinking...
Until next time,
Hopeful Believer.
Sunday, January 30, 2011
Jan 30, Day +3 Painful Sleep
Well we thought that all the much needed sleep was a welcomed respite, however that activity brought on an unexpected new development. Apparently with the 4 hours of sleep with a few breaks in between, cause some ware on the bones and muscles. This was further enabled by the nausea drugs, which made B want to lay down all day long. B is not one to just laze around, on the contrary, he is always up and on the go, even when he was sick you would never know it, as he is dressed, and up and moving around. The doctors mentioned that this was not related to the bone marrow as they hadn't begun those meds yet! What? Apparently later in the week B will be given drugs to help stimulate the bone marrow and this will cause some pain in his bones. Huh. We didn't know about this. So a few doses of morphine and then a standing order for Oxycontin later and his is good to go. Well, we rallied the troops today and brought in a new mattress pad and pillow to help with the bed padding. Add to that the quilt and throw blanket and yea we succeeded in making the bed much more comfortable. Hard to think that the bed you have to be in for the next, at least 2 weeks will certainly cause you excruciating pain. By the end of the day, we felt pretty good. B was allowed to walk in the halls again, when no one is around to get those bones and muscles moving again. I think that contributed to his feeling better.
B got 2 more bags of O neg blood this morning. They start this infusion in the early morning like 3 am. ugh. It usually ends by 8 or 9. So he should be filled up with O neg, but believe it or not, he still has some A neg blood in him. So tomorrow he is going to have what they call a blood exchange procedure. I mentioned this the other day. There are some possible issues with this process, so your prayers are coveted. Also, since today the pain thing was so weird and there is quite a lot of prayer going up for these super cells to take, maybe they started working all on their own? B said his pain was in his lower back all the way across. That sounds just about right where the largest concentration of bone marrow is on a person. We may never really know what this was about, but I do know there are unusual things happening that all seem to be good things, even if they may hurt a bit. So we do thank you for your continued prayer. It has power!
Until next time,
Hopeful Believer
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