I sincerely want to thank everyone who came to the condo to express their condolences. It was a pleasure to see how much Boone was appreciated by his co-workers, clients, consultants, and friends.
At the visitation $4, 470 was raised to benefit the Sarah Cannon Cancer Center for Blood Disorders.
I cannot thank those of you enough who donated. For those that took flyers, please remember to send your donations To Sarah Cannon in Boone's name.
Anyone else wishing to, should send their donations to the address listed in the prior post.
In my reading, it seems they are very close to finding a cure for Leukemias and Lymphomas, and other cancers. There is very promising research being done on mice that may well transfer to humans in the near future.
So please, help all you can. Either by becoming a Stem Cell Donor or by donating money for research.
Thank you so very much.
Monday, August 12, 2013
Visitation Register
Please send donations in Boone's name to:
Dr. Michael Savona, MD, FACP c/o
Sarah Cannon Cancer Center for Blood Disorders
250 25th Avenue North
The Atrium Suite 412
Nashville, TN 37203
Please use the comment section for visitation.
Dr. Michael Savona, MD, FACP c/o
Sarah Cannon Cancer Center for Blood Disorders
250 25th Avenue North
The Atrium Suite 412
Nashville, TN 37203
DAVID BOONE GREGORY
January 15, 1953 - August 5, 2013
Tuesday, August 6, 2013
Final Arrangements
We've had some plan changes since I started telling everyone that visitation would be at Woodlawn.
After finding out that Woodlawn wanted almost $5,000 to cremate Boone plus fees, of course, for the rooms that were higher than any 5 star hotel charges. I think it's criminal to charge such fees when people are distraught and maybe are not experienced in such things. But unfortunately for them, I have experience in such things. Daddy's cremation cost was about $700.
My "Other Husband" got on the Internet and found an Honest Funeral home; one fair with their pricing. For those of you in the Nashville area, and you find yourself in need, please check out Highland Hills Funeral Home on Brick Church Pike. They are going to go to Woodlawn to pick up Boone's body, provide the container to move him in a dignified manor, refrigeration, cremate his body, and provide an appropriate vinyl box for his ashes for $695 + tax. Pretty damn fair. Very professional. The Obituary will run in the Thursday edition of the Nashville Tennessean, and the next issue of the Portland (TN) Leader.
Needless to say, we are not going to do Woodlawn at all. Not being cheap, just trying not to be stupid.
Boone had two things that he wanted. 1) to see the critters, and 2) to get back to the condo.
Bless Harold, he brilliantly thought of having the visitation at the condo. Boone will get one of his final wishes, his ashes will be at the condo for visitation with family and friends.
Visitation will occur between 4 & 8 PM Thursday and Friday evening at our condo.
The address is:
700 12th Avenue South
Terrazzo Building
Unit 1511
37203
Boone's ashes will be, as requested, "blown up". Friends and family are invited to gather on July 3rd, 2014, at the farm, barring some catastrophic event. We will celebrate his life and offer him a farewell toast with the biggest firework I can get, even if I have to hire a professional company to launch him.
In lieu of flowers, we are going to have a collection bowl for donations to the Sarah Cannon Caner Center for Blood Disorders at the visitations. SCCC paid for all of Boone's treatments, drugs, everything beyond our OOP deductible. I have no idea what the final tab will be, but it could easily over $3 million. I understand that the transplant alone runs about $1M. I hope to hand deliver the donations to Dr. S. so that they may continue their good work.
If you live outside of Nashville, donations may be mailed to:
Sarah Cannon Center for Blood Disorders
250 25th Ave North
Nashville, TN 37203
Please indicate that your donation is for Boone. (And if all you know is "Boone", they will know who it's for.)
The doctors, nurses, techs, specialists of all kinds, even the housekeeping staff are the best I've ever seen. Not a slouch in the bunch. They are amazing people doing incredibly difficult work. They get attached to their patients, they know their friends and their families. They shared their stories with us and we got to know them as friends. I know I will miss these wonderful people.
After finding out that Woodlawn wanted almost $5,000 to cremate Boone plus fees, of course, for the rooms that were higher than any 5 star hotel charges. I think it's criminal to charge such fees when people are distraught and maybe are not experienced in such things. But unfortunately for them, I have experience in such things. Daddy's cremation cost was about $700.
My "Other Husband" got on the Internet and found an Honest Funeral home; one fair with their pricing. For those of you in the Nashville area, and you find yourself in need, please check out Highland Hills Funeral Home on Brick Church Pike. They are going to go to Woodlawn to pick up Boone's body, provide the container to move him in a dignified manor, refrigeration, cremate his body, and provide an appropriate vinyl box for his ashes for $695 + tax. Pretty damn fair. Very professional. The Obituary will run in the Thursday edition of the Nashville Tennessean, and the next issue of the Portland (TN) Leader.
Needless to say, we are not going to do Woodlawn at all. Not being cheap, just trying not to be stupid.
Boone had two things that he wanted. 1) to see the critters, and 2) to get back to the condo.
Bless Harold, he brilliantly thought of having the visitation at the condo. Boone will get one of his final wishes, his ashes will be at the condo for visitation with family and friends.
Visitation will occur between 4 & 8 PM Thursday and Friday evening at our condo.
The address is:
700 12th Avenue South
Terrazzo Building
Unit 1511
37203
Boone's ashes will be, as requested, "blown up". Friends and family are invited to gather on July 3rd, 2014, at the farm, barring some catastrophic event. We will celebrate his life and offer him a farewell toast with the biggest firework I can get, even if I have to hire a professional company to launch him.
In lieu of flowers, we are going to have a collection bowl for donations to the Sarah Cannon Caner Center for Blood Disorders at the visitations. SCCC paid for all of Boone's treatments, drugs, everything beyond our OOP deductible. I have no idea what the final tab will be, but it could easily over $3 million. I understand that the transplant alone runs about $1M. I hope to hand deliver the donations to Dr. S. so that they may continue their good work.
If you live outside of Nashville, donations may be mailed to:
Sarah Cannon Center for Blood Disorders
250 25th Ave North
Nashville, TN 37203
Please indicate that your donation is for Boone. (And if all you know is "Boone", they will know who it's for.)
The doctors, nurses, techs, specialists of all kinds, even the housekeeping staff are the best I've ever seen. Not a slouch in the bunch. They are amazing people doing incredibly difficult work. They get attached to their patients, they know their friends and their families. They shared their stories with us and we got to know them as friends. I know I will miss these wonderful people.
Monday, August 5, 2013
The End has Come
Dear friends, it is with great sorrow that I tell you of Boone's passing today. I'm experiencing gaps in my memory, so please understand if I get something backward.
Saturday he had a setback where he was unable to hold his O2 level above 90. He was put on a mechanical respirator that forced air into his lungs. After a while it was taken off to see if he could hold his oxygen level. He did fine for a while, then it started dropping into the mid 80's. They put him on normal O2 set at its maximum level. That was ok for a few hours, but then his oxygen level started dropping again. They put the mask respirator back on him.
Sunday morning I arrived earlier than normal to find the rapid response team in his room. They were stabilizing his oxygen again. I'm not really clear on exactly what happened, but Dr. B. was there and asked me what I wanted to do. Te question stunned me. When asked if this was a life and death decision and he said yes. The options were to send him to the ICU to have a ventilator put on him, and no doubt be tied down; which he hated, leave him in the ward on the respirator, or I think send him to Hospice. All I said was that I wanted him to stay on the ward. They would not restrain him the way the ICU would, and no telling what all tests the ICU doctors would want to do...It's more of a fog to me now. There were so many people in his room and so much urgency. I had no idea what I was walking into when I arrived. I expected him to be in bad shape, but certainly did not expect this.
Dr. B. turned around and said "DNR". Several people talked to me about what was happening, but honestly, I don't remember much of it, other than he now had an infection in his lungs and lots of fluid. They were going to give him Lasix, an anti seizure drug, and other drugs for palliative care. I asked Dr. B what was causing the horrible pain in Boone's knees that the pain meds were not controlling. He said it was because Boone's blood flow was no longer reaching the parts of the knee and so the cells were dying, and said it is excruciatingly painful.
Boone was semi conscious all that day. That evening Boone's brother and I discussed his situation and decided to ask Dr. S. on Monday morning if we could stop the respirator. If Boone had an infection, then that was pretty much the end of the line. I had been told this many times. His immune system couldn't fight off any infection of any kind.
Monday morning Dr. H the infection control Dr. came in and told me that all of Boone's organs had or were failing. Boone had not passed anything through his ostomy bag in 3 days, his urine was almost black, his skin was still getting more yellow, and now he has a gram negative infection in his lungs. I asked her if taking him off the respirator was the right thing to do, and she agreed that it was.
It was Dr. S's. first day back from his vacation. He heard something was up with Boone so after he did his clinic rounds he came to Boone's room. He didn't know what exactly was going on because the last reports he had heard Boone was doing pretty well. We asked him if we could remove the respirator. He was obviously shocked at the question, and "no" was the answer. He said he would do his rounds and be back around noon. At about 9 o'clock he came back in the room; he had talked to the nurses, looked at the charts, discussed it with Dr. B, and said yes it's time.
Boone's brother called their youngest sister that lives nearby. It was going to take her a few hours to get to the hospital. We told the staff we wanted to wait for her to arrive before we did anything. In those few hours, his closest friends from work came by. We went out into the corridor while they said their goodbyes. I could hear them laughing and talking. Boone could hear them too. Maybe he was laughing with them inside.
Nurses from other shifts had heard he was in bad shape and came to say how much they liked him and to shed tears with us, rub his arm, and tell him how much they enjoyed having him as a patient. Of course the ladies from Housekeeping came by with big hugs and tears.
When Boone's sister arrived we were pretty much left alone in the room to say our goodbyes. After many tears fell I went out and told the nurses we were ready. After a few minutes they came in and said they needed to bathe him and get him ready. Everyone excused themselves but me. Together we gave Boone his last bath. I washed his feet and one leg and one arm. It was deeply moving to get this privilege to do this for him one last time. As we rolled him to clean his back and change the bed pad under him he cried out in pain and fear. It was an awful sound. He was heavily drugged and still was screaming from the pain. It was then that I knew for sure we were doing the right thing. He was given another injection of Dilaudid, and then an anti anxiety drug so he wouldn't react when the respirator mask was removed. I asked for 10 minutes alone with him before they called the rest of the family back. After 20 minutes, I called the nurse to tell her I was ready. The rest of the family was brought back in and the nurses began the procedure. The mask was removed and Boone reached up to grab it and began to gasp for air.
We had been told it wouldn't take more than 10 minutes, but stubborn as he always was, he took about 30 to take in his last breath. Dr. S. came in and listened for a heart beat, found none, consoled us and left us with Boone's body.
I think most everyone left the room while I sat there holding Boone's hand. As the minutes went by, he became colder, more yellow, and his face muscles relaxed into a smile.
We cleaned out his room of his personal belongings, stayed as long as we could before the nurses had to prep him for the funeral home to come pick him up.
I kissed his head one last time and told him I loved him.
Saturday he had a setback where he was unable to hold his O2 level above 90. He was put on a mechanical respirator that forced air into his lungs. After a while it was taken off to see if he could hold his oxygen level. He did fine for a while, then it started dropping into the mid 80's. They put him on normal O2 set at its maximum level. That was ok for a few hours, but then his oxygen level started dropping again. They put the mask respirator back on him.
Sunday morning I arrived earlier than normal to find the rapid response team in his room. They were stabilizing his oxygen again. I'm not really clear on exactly what happened, but Dr. B. was there and asked me what I wanted to do. Te question stunned me. When asked if this was a life and death decision and he said yes. The options were to send him to the ICU to have a ventilator put on him, and no doubt be tied down; which he hated, leave him in the ward on the respirator, or I think send him to Hospice. All I said was that I wanted him to stay on the ward. They would not restrain him the way the ICU would, and no telling what all tests the ICU doctors would want to do...It's more of a fog to me now. There were so many people in his room and so much urgency. I had no idea what I was walking into when I arrived. I expected him to be in bad shape, but certainly did not expect this.
Dr. B. turned around and said "DNR". Several people talked to me about what was happening, but honestly, I don't remember much of it, other than he now had an infection in his lungs and lots of fluid. They were going to give him Lasix, an anti seizure drug, and other drugs for palliative care. I asked Dr. B what was causing the horrible pain in Boone's knees that the pain meds were not controlling. He said it was because Boone's blood flow was no longer reaching the parts of the knee and so the cells were dying, and said it is excruciatingly painful.
Boone was semi conscious all that day. That evening Boone's brother and I discussed his situation and decided to ask Dr. S. on Monday morning if we could stop the respirator. If Boone had an infection, then that was pretty much the end of the line. I had been told this many times. His immune system couldn't fight off any infection of any kind.
Monday morning Dr. H the infection control Dr. came in and told me that all of Boone's organs had or were failing. Boone had not passed anything through his ostomy bag in 3 days, his urine was almost black, his skin was still getting more yellow, and now he has a gram negative infection in his lungs. I asked her if taking him off the respirator was the right thing to do, and she agreed that it was.
It was Dr. S's. first day back from his vacation. He heard something was up with Boone so after he did his clinic rounds he came to Boone's room. He didn't know what exactly was going on because the last reports he had heard Boone was doing pretty well. We asked him if we could remove the respirator. He was obviously shocked at the question, and "no" was the answer. He said he would do his rounds and be back around noon. At about 9 o'clock he came back in the room; he had talked to the nurses, looked at the charts, discussed it with Dr. B, and said yes it's time.
Boone's brother called their youngest sister that lives nearby. It was going to take her a few hours to get to the hospital. We told the staff we wanted to wait for her to arrive before we did anything. In those few hours, his closest friends from work came by. We went out into the corridor while they said their goodbyes. I could hear them laughing and talking. Boone could hear them too. Maybe he was laughing with them inside.
Nurses from other shifts had heard he was in bad shape and came to say how much they liked him and to shed tears with us, rub his arm, and tell him how much they enjoyed having him as a patient. Of course the ladies from Housekeeping came by with big hugs and tears.
When Boone's sister arrived we were pretty much left alone in the room to say our goodbyes. After many tears fell I went out and told the nurses we were ready. After a few minutes they came in and said they needed to bathe him and get him ready. Everyone excused themselves but me. Together we gave Boone his last bath. I washed his feet and one leg and one arm. It was deeply moving to get this privilege to do this for him one last time. As we rolled him to clean his back and change the bed pad under him he cried out in pain and fear. It was an awful sound. He was heavily drugged and still was screaming from the pain. It was then that I knew for sure we were doing the right thing. He was given another injection of Dilaudid, and then an anti anxiety drug so he wouldn't react when the respirator mask was removed. I asked for 10 minutes alone with him before they called the rest of the family back. After 20 minutes, I called the nurse to tell her I was ready. The rest of the family was brought back in and the nurses began the procedure. The mask was removed and Boone reached up to grab it and began to gasp for air.
We had been told it wouldn't take more than 10 minutes, but stubborn as he always was, he took about 30 to take in his last breath. Dr. S. came in and listened for a heart beat, found none, consoled us and left us with Boone's body.
I think most everyone left the room while I sat there holding Boone's hand. As the minutes went by, he became colder, more yellow, and his face muscles relaxed into a smile.
We cleaned out his room of his personal belongings, stayed as long as we could before the nurses had to prep him for the funeral home to come pick him up.
I kissed his head one last time and told him I loved him.
Friday, August 2, 2013
It Was Tuesday Morning
It was the day after the chat I had in the corridor with Dr. B. that Boone wasn't supposed to see.
Since March 16, 2012, I've been researching CMML, transplants, prognosis's and treatment options. None of the information I found was good news. Maybe that's why I kept searching, in hopes of finding something that was newer, more promising. I did find the dandelion root extract which seemed to be the cause of Boone's blood work going into normal numerical ranges, even though his DNA was very messed up.
After the transplant, I did the same; searched the world over looking for post transplant outcomes, GVHD, protocols for it, and as before there was no good news. Like before, the later the studies were the worse the news became because of better record keeping and separating CMML from other myelodysplastic or proliferative disorders. CMML is the mother of all bitches.
Stubborn as Boone is, he beat the odds. His transplant engrafted 100%. 95% is considered complete. His PV samples, his bone marrow biopsy, and his spinal tap all were 100% donor cells. Then the GVHD happened and as you know, none of the protocols worked. Odds get really bad when the steroids in the first round don't control it. Odds get worse with each passing protocol with no response.
In all my research I couldn't find anything that the doctors had not tried; and they had had tried each in the apparent proper order. On Monday when Dr. B. frankly said he would have to do some research, I knew he was into territory where I don't have access. Thus Boone saw me in the hall asking questions, I couldn't ask in front of him.
As you know, Boone saw and asked, and I couldn't lie to him.
The rest of the day and evening for me was something beyond depressing, the feeling of loss and hopelessness overcame me.
Tuesday morning as I drove into town to see Boone, I called a few friends; no answers, no one to talk to. There were others I could have called, but after the 3rd attempt at getting our oldest friends, I was crying, sobbing loudly in the traffic. I couldn't seem to stop. The waves of tears just kept coming.
When I arrived that the Cancer Center, I was trying my best to vacuum the tears back into my eyes and get my face straightened out enough to be able to go into Boone's room smiling. I did fairly well through the lobby, but felt people were looking at me the same way they did at the CCU in Atlanta when Momma died. They know that face, that feeling, and are all hoping it doesn't come to roost with them. They just silently watch you pass by; all conversations put on hold.
After exiting the elevator and sterilizing my hands I hit the automatic door opener. The double doors swung open without a sound, and there just on the other side were the two housekeepers that have always been great about cheering things up. They saw that face. They know it well. They see it much too often.
Deschelle grabbed me and hugged me tight, "what's wrong baby?" I told her the prognosis from Dr. B.
Rose was within ear shot and came over to give me a big hug. "You can't go in there looking like that". She was right, I couldn't I had to get my act together before I walked into his room. My plan was to sit in the corridor until I could get it together.
But Rose and Deschelle (Sorry I know that's not the correct spelling) are experienced at making the worst of times into tolerable times. Times where you can smile and even laugh out loud. Rose told me to come on with her, she was going to dance her way into that room. And so she started shaking that booty for all it was worth. I got to laughing at her just as she flung his door open and sashayed in dancing all the way. She had gotten me into his room with a big smile on my face. Boone was laughing. Then here came Deschelle, who is always messing with Boone, and "sees" Rose dancing and proceeds to attempt to out dance her. By that time, I had to join in. So there we three were shaking our booties. Even tough I ain't got no rhythm; Boone was totally enjoying every second of it. He was grinning from ear to ear.
Just as we were getting good and wound up, in came the lady from Food Services with breakfast. She saw there was a party going on and began shaking that ass, shaking that ass. She had no idea what was going on but made it go over the top. We were doing Tina before it was over.
And so they each departed leaving me alone with Boone with a big grin on my face that I was able to hold on to for as long as I was there.
Ladies, thank you so much for caring, for giving everything you have, and for shaking that ass. You all deserve a big raise. You certainly have earned more stars in your crowns.
I hope the doctors know how much these ladies do for their patients and their families. They are at their best in the worst of times. Cleaning is the least (even though they are very diligent about it) of the things they do. Getting us all to laugh is their speciality, and they do it very well.
Shake on.
Kg
Since March 16, 2012, I've been researching CMML, transplants, prognosis's and treatment options. None of the information I found was good news. Maybe that's why I kept searching, in hopes of finding something that was newer, more promising. I did find the dandelion root extract which seemed to be the cause of Boone's blood work going into normal numerical ranges, even though his DNA was very messed up.
After the transplant, I did the same; searched the world over looking for post transplant outcomes, GVHD, protocols for it, and as before there was no good news. Like before, the later the studies were the worse the news became because of better record keeping and separating CMML from other myelodysplastic or proliferative disorders. CMML is the mother of all bitches.
Stubborn as Boone is, he beat the odds. His transplant engrafted 100%. 95% is considered complete. His PV samples, his bone marrow biopsy, and his spinal tap all were 100% donor cells. Then the GVHD happened and as you know, none of the protocols worked. Odds get really bad when the steroids in the first round don't control it. Odds get worse with each passing protocol with no response.
In all my research I couldn't find anything that the doctors had not tried; and they had had tried each in the apparent proper order. On Monday when Dr. B. frankly said he would have to do some research, I knew he was into territory where I don't have access. Thus Boone saw me in the hall asking questions, I couldn't ask in front of him.
As you know, Boone saw and asked, and I couldn't lie to him.
The rest of the day and evening for me was something beyond depressing, the feeling of loss and hopelessness overcame me.
Tuesday morning as I drove into town to see Boone, I called a few friends; no answers, no one to talk to. There were others I could have called, but after the 3rd attempt at getting our oldest friends, I was crying, sobbing loudly in the traffic. I couldn't seem to stop. The waves of tears just kept coming.
When I arrived that the Cancer Center, I was trying my best to vacuum the tears back into my eyes and get my face straightened out enough to be able to go into Boone's room smiling. I did fairly well through the lobby, but felt people were looking at me the same way they did at the CCU in Atlanta when Momma died. They know that face, that feeling, and are all hoping it doesn't come to roost with them. They just silently watch you pass by; all conversations put on hold.
After exiting the elevator and sterilizing my hands I hit the automatic door opener. The double doors swung open without a sound, and there just on the other side were the two housekeepers that have always been great about cheering things up. They saw that face. They know it well. They see it much too often.
Deschelle grabbed me and hugged me tight, "what's wrong baby?" I told her the prognosis from Dr. B.
Rose was within ear shot and came over to give me a big hug. "You can't go in there looking like that". She was right, I couldn't I had to get my act together before I walked into his room. My plan was to sit in the corridor until I could get it together.
But Rose and Deschelle (Sorry I know that's not the correct spelling) are experienced at making the worst of times into tolerable times. Times where you can smile and even laugh out loud. Rose told me to come on with her, she was going to dance her way into that room. And so she started shaking that booty for all it was worth. I got to laughing at her just as she flung his door open and sashayed in dancing all the way. She had gotten me into his room with a big smile on my face. Boone was laughing. Then here came Deschelle, who is always messing with Boone, and "sees" Rose dancing and proceeds to attempt to out dance her. By that time, I had to join in. So there we three were shaking our booties. Even tough I ain't got no rhythm; Boone was totally enjoying every second of it. He was grinning from ear to ear.
Just as we were getting good and wound up, in came the lady from Food Services with breakfast. She saw there was a party going on and began shaking that ass, shaking that ass. She had no idea what was going on but made it go over the top. We were doing Tina before it was over.
And so they each departed leaving me alone with Boone with a big grin on my face that I was able to hold on to for as long as I was there.
Ladies, thank you so much for caring, for giving everything you have, and for shaking that ass. You all deserve a big raise. You certainly have earned more stars in your crowns.
I hope the doctors know how much these ladies do for their patients and their families. They are at their best in the worst of times. Cleaning is the least (even though they are very diligent about it) of the things they do. Getting us all to laugh is their speciality, and they do it very well.
Shake on.
Kg
Monday, July 29, 2013
I'VE HAD BETTER DYS
The best thing that I say about today is that tomorrow
has to be better. I slept well last
night after midnight but was still quite tired this morning. Kathi was here and so was breakfast by the time
I woke up. J from PT arrived fairly early, which I hate
and don’t hide well (the early part not the PT part, well mostly not the PT
part) and after my usual whining about it we did manage to do two half
laps. Nothing earth shattering but much
better than I have been doing.
Dr. B and entourage showed up about 10:00. He’s putting me back on the TPN. Without it and with my system just passing
the food that I do eat straight through I’m back down to 114#. I am as skinny as a rail, it’s really
pathetic looking. He is also still
holding off on the photopheresis until the damage to the eye clears up. That may be another week or so. The major
news is that he is changing the steroid regimen. He explained the details but as usual I basically
understood them at the time but could explain them to you now. It is a different steroid, apparently a newer
one because the nurse was not very familiar with it. My take-away from the visit was “what we are
doing isn’t working so we are going to try this”.
It was right after Dr. B left that PT showed up. When I turned the corner to come back toward
my room I thought I saw Kathi talking with Dr. B in the hallway. After getting back in bed I asked and yes she
had gone out and talked to him. My take
away was correct. They have four typical
methods for treating GVHD and this new method is the fourth. If it doesn’t work then, well there is no
fifth. The next couple of hours involved
a lot of crying and holding each other. The
nurse came in at one point and found us lying together. She had come to check my blood sugar but
decided that it could wait. Finally Kathi had to go so she could deal with the critters
at home, that I miss dearly, and other assorted duties. I ordered a dose of pain meds. The nurse didn’t even ask about the level of
pain. She knew it was at least 10 and
why.
So while nothing is imminent the time has come to ponder
the possibilities and plans for things we don’t want to ponder or plan
for. Dr. B, it seems to me, tends to be
more pessimistic so we will wait to talk to Dr. S next Monday when he returns
from vacation to see what he thinks. In
many ways I am still just like any of you.
I could drop dead tomorrow of a heart attack unrelated to the disease. In some ways I am safer, i.e. I cannot die in a car crash unless the car is
flying and can make a sharp turn in midair at a high speed. For the other side of the coin we just don’t
have enough information and even then it is just for possibilities. I could still get rid of the GVHD. Dr. S told me about a patient he had here for
more than a year who recently kick the good Dr.’s ass at some sport.
Boone
Saturday, July 27, 2013
SUGAR SUGAR
Last night Nurses J and A were on duty and about midnight were taking my vitals and since I had to urinate, which I prefer to do standing, decided to check my weight. For some reason my body decided at that moment that it was too weak to stand or do much of anything else. Turned out it was a blood sugar issue. We decided to weigh later and they proceeded with meds and other nursing stuff. My back was hurting so after getting some pain meds I went to sleep about 3AM. I'm not sure how much longer they worked because I didn't wake up until the weekend Dr. woke me at about 9. My blood sugar had gone very low and I was shaking all over. It was a very strange sensation. Nurses A and L worked to get my sugar level up while I lay in bed and shaking like I had bad Parkinson's. Breakfast had arrived while I slept but I ate what I could but my hands were shaking so bad it was hard to get the food in my mouth. Finally after a lot of meds and juices the shaking settled and eventually cleared up. My sugar levels have been running high since then so I've had quite a bit of insulin today as well.
On the steroid front it turns out that you can't DC (discontinue) them all at once but they have lowered the dosage. II was so out of it this morning when the Dr. came by and forgot to ask if that would continue and if so at what pace. That answer may very well have to wait until Dr. B is back Monday.
She'll never know but I'd like to offer Cokie Roberts my condolences on the passing of her mother. Also my condolences to all of us on the passing of J.J. Cale. My both of them rest in peace.
Boone
On the steroid front it turns out that you can't DC (discontinue) them all at once but they have lowered the dosage. II was so out of it this morning when the Dr. came by and forgot to ask if that would continue and if so at what pace. That answer may very well have to wait until Dr. B is back Monday.
She'll never know but I'd like to offer Cokie Roberts my condolences on the passing of her mother. Also my condolences to all of us on the passing of J.J. Cale. My both of them rest in peace.
Boone
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