Sunday. June 30, 2013
LAZY SUNDAY, AS THEY SHOULD BE
Not much happening today. I woke Kathi up calling her this morning. Wish I hadn't done that. All the moving and coming to see me and getting the condo ready to lease is wearing on her. That is a lot to dump on one person. My back started hurting while she was here and I feel asleep. She's back at the farm now and I'm sure cleaning and unpacking. I wish there was something I could do to help but there just isn't. All of you who are the caregivers out there deserve a lot more thanks and help than those of us in my condition can give. I know that, at least at times, this effort is much harder on you all than us. So thank you.
I got some pain meds for my back and then won my first chess game against the computer in ages. Long ago I was a pretty good chess player but no longer. We didn't use a clock and games would easily last two hours or more. If any of you are interested in playing by email I would like to try it. I really do suck now but I'd love to get better again and I promise not to cheat.
Hope you're having a good day.
Boone
Sunday, June 30, 2013
Saturday, June 29, 2013
Saturday, June 29, 2013
FAMILIY DAY AT THE HOSPITAL
My donor sister has been in town since my trip to the ICU and visiting every day. Her husband has driven down to take her back to Wisconsin. Today is my baby sister and her husbands 28th anniversary. The later are flying out west today and the former are taking them to the airport so they came by to visit. My brother and his husband came by at the same time. I can't remember the last time we were are in the same room together. It was quite nice. Kathi had been by earlier but had to leave before they all arrived. She is still swamped with taking care of the move to the farm by herself. It is wearing her out and there is nothing I can do to help. I feel bad about that.
It is the weekend so there is nothing new on the medical front. I'm still NPO until Monday and still scheduled tor a photopheresis treatment Monday morning. That means more blood and platelets early Monday morning. Amanda I fully understand about the platelets and bruising. My platelets have been running as low as 20 so I have large bruises on my arms from all the needle sticks. The platelet count needs to be 50 for the photopheresis. Also I'm so sorry to hear about the recent deaths in your family. No one should have to put up with that much in one year, but I guess lots of people do and have to figure out a way to cope. I hope this, Jeri's blog and others help us all get though it a little easier.
Rest easy my friends.
Boone
FAMILIY DAY AT THE HOSPITAL
My donor sister has been in town since my trip to the ICU and visiting every day. Her husband has driven down to take her back to Wisconsin. Today is my baby sister and her husbands 28th anniversary. The later are flying out west today and the former are taking them to the airport so they came by to visit. My brother and his husband came by at the same time. I can't remember the last time we were are in the same room together. It was quite nice. Kathi had been by earlier but had to leave before they all arrived. She is still swamped with taking care of the move to the farm by herself. It is wearing her out and there is nothing I can do to help. I feel bad about that.
It is the weekend so there is nothing new on the medical front. I'm still NPO until Monday and still scheduled tor a photopheresis treatment Monday morning. That means more blood and platelets early Monday morning. Amanda I fully understand about the platelets and bruising. My platelets have been running as low as 20 so I have large bruises on my arms from all the needle sticks. The platelet count needs to be 50 for the photopheresis. Also I'm so sorry to hear about the recent deaths in your family. No one should have to put up with that much in one year, but I guess lots of people do and have to figure out a way to cope. I hope this, Jeri's blog and others help us all get though it a little easier.
Rest easy my friends.
Boone
Friday, June 28, 2013
Friday, July 28, 2013
PHOTOPHERSIS NUMBER 3
Again today the photopheresis treatment came off without a hitch. Treated the blood with light for 31 minutes this. You are supposed to wear sunglasses after the treatment but I haven't been and so far no headaches. I'm just not a big fan of sunglasses. That is my brother's department.
Treatment is being revised a bit. I'm going back on the clear liquid diet but also back on the full dose of steroids. I thanked Dr. S and pointed out that the NPO was OK after a day or so but the back and forth was tough. He agreed that was a bit cruel. Then he looked at the CD's my buddy from the office had brought by and we disgusts how many Jay-Z songs he knew vs. how many he could name (none).
They got me hooked back up with PT which is good. After three days on the ICU and four with not even any TPO I'm pretty weak. Haven't been for a walk yet but I' back on the rubber bands.
Not much else to tell which I guess is good. Here's hoping the food makes up for the higher dose of steroids. Hope Jeri and Amanda and the rest of you are doing well.
Boone.
PHOTOPHERSIS NUMBER 3
Again today the photopheresis treatment came off without a hitch. Treated the blood with light for 31 minutes this. You are supposed to wear sunglasses after the treatment but I haven't been and so far no headaches. I'm just not a big fan of sunglasses. That is my brother's department.
Treatment is being revised a bit. I'm going back on the clear liquid diet but also back on the full dose of steroids. I thanked Dr. S and pointed out that the NPO was OK after a day or so but the back and forth was tough. He agreed that was a bit cruel. Then he looked at the CD's my buddy from the office had brought by and we disgusts how many Jay-Z songs he knew vs. how many he could name (none).
They got me hooked back up with PT which is good. After three days on the ICU and four with not even any TPO I'm pretty weak. Haven't been for a walk yet but I' back on the rubber bands.
Not much else to tell which I guess is good. Here's hoping the food makes up for the higher dose of steroids. Hope Jeri and Amanda and the rest of you are doing well.
Boone.
Thursday, June 27, 2013
Thursday, June 6, 2013
SO FAR SO GOOD, AGAIN
Today they ran the photopheresis and it came off without a hitch so I get it tomorrow and then the plan is three days a week. The whole thing takes about two hours and I have to wear sunglasses afterwards. Maybe all the time after I've had a few. I'll have to ask about that. Nothing else new. Just see how this works. I'm back on NPO but I did talk Dr. S out of popsicle, just one. He said he guess I'd earned it.
Can't think of anything new to tell. Maybe that's good thing.
Boone
SO FAR SO GOOD, AGAIN
Today they ran the photopheresis and it came off without a hitch so I get it tomorrow and then the plan is three days a week. The whole thing takes about two hours and I have to wear sunglasses afterwards. Maybe all the time after I've had a few. I'll have to ask about that. Nothing else new. Just see how this works. I'm back on NPO but I did talk Dr. S out of popsicle, just one. He said he guess I'd earned it.
Can't think of anything new to tell. Maybe that's good thing.
Boone
Wednesday, June 26, 2013
Wednesday, June 26, 2013
I'M BACK
And glad to be back on the transplant floor.. I love all the nurses here. Last night I read what Kathi has written on the blog while I was in the ICU. It's hard to read that at least on of your doctors doesn't think you are going to make it out of the hospital, ever., It took me while to pull it together. Then I remembered a line of Jim Carry's, an overactor from the only movie of that I like "Dumb and Dumber". At one point he asks the girl that he chasing to tell him straight up what his chances are with her. She says "about a million to one" to which he replies with a large grin, "Show you telling me there's a chance then"'. People win lotteries and get hit by lighting everyday. The odds may be low but they are not zero.
I'm still week but I still feel good. That is the weird thing I feel like I could go home and be fine except that I'd be dead shortly if I tried that.
I believe it is "Tales of Power" where Castaneda tells Don Juan that he has a friend that is dying and asks if there is anything that she can do. Juan Genero tells him that if she is strong enough that when death comes to take her then she push her hand away from her chest, say "No" and push death way. I may not have the power but I deffinitley have the will.
So hang in there with me with all the thoughts, prayers and good vibrations. And for all the other folks in similar situations. I can tell you for sure that just knowing you are out there does help. Every night I send that ball of energy though my GI tract to attach the GVHD.
Boone
I'M BACK
And glad to be back on the transplant floor.. I love all the nurses here. Last night I read what Kathi has written on the blog while I was in the ICU. It's hard to read that at least on of your doctors doesn't think you are going to make it out of the hospital, ever., It took me while to pull it together. Then I remembered a line of Jim Carry's, an overactor from the only movie of that I like "Dumb and Dumber". At one point he asks the girl that he chasing to tell him straight up what his chances are with her. She says "about a million to one" to which he replies with a large grin, "Show you telling me there's a chance then"'. People win lotteries and get hit by lighting everyday. The odds may be low but they are not zero.
I'm still week but I still feel good. That is the weird thing I feel like I could go home and be fine except that I'd be dead shortly if I tried that.
I believe it is "Tales of Power" where Castaneda tells Don Juan that he has a friend that is dying and asks if there is anything that she can do. Juan Genero tells him that if she is strong enough that when death comes to take her then she push her hand away from her chest, say "No" and push death way. I may not have the power but I deffinitley have the will.
So hang in there with me with all the thoughts, prayers and good vibrations. And for all the other folks in similar situations. I can tell you for sure that just knowing you are out there does help. Every night I send that ball of energy though my GI tract to attach the GVHD.
Boone
Tuesday, June 25, 2013
Pauline here. Ok , I guess it's time to come out of the closet; Kathi here. I used "Pauline" in the blog we wrote about my Dad. I was afraid of the Interwebz, and thought it might be more private. Yeah right. Pauline was my Mother's name and is my middle name.
Early this morning I dropped by the Clinic to leave some paperwork and request a meeting with Dr. S.
They said they would text him with a request to call me.
I went to the ICU to see Boone. His color is better, only mildly yellow. His beard and 'stash are growing out pretty fast. The head hair is being slower, but it is coming back too. He was sleeping for the most part so I put my head down on the bed and tried to have a little cat nap.
My phone vibrated, but the call failed. It was a number I didn't have in my contacts. So I left the ICU, went to the main Atrium, and called. It was the clinic, Dr. S. got the message and will call. I explained that in the ICU, I can't get a cell signal anywhere on that floor. Nurse C said, to come on down to the clinic, Dr. S. was there seeing outpatients.
When I arrived they ushered me back to the infusion room. A large room with 4-5 chairs for patients to sit and get infused. I took a seat, and as soon as Dr. S. finished talking to the patient in the next room he came in to talk to me. He scooted his chair up close, knees to knees. I wanted to know where we are what's really going on, and why is there so much conflicting information.
He keeps total eye contact with you when you are talking. He said Boone is in a bad place right now. The spinal tap, or lumbar puncture, is to determine if there is a fungal or bacterial infection in his brain, or another type of Leukemia that sometimes can pop up in the brain. He clearly did not associate the seizure with the photopheresis. He said there appears to be something happening there and we need to find out what's going on. I told him Boone had been hit by a car at age 9 and had a scar on his head in the area they are seeing these "old clots". He just shook his head no. That's not it.
We discussed all the doctors and all the comments they've made that just seem strange and confusing. He in no way denied anything I said. What he told me was first of all, he is in charge. There is no other Dr. including Dr. H the ID doc that can over rule or change his orders. (Yeah!) He acknowledged that it looks like they are not communicating, and it's difficult because they can never all be in the same room at the same time. It's a 24 shift of doctors and rotations, so people can have days off. I totally get that. He said they are in close communication and he would make it clear to them who was in charge and to not make off hand remarks about something. Each, he said, have their own bedside manner and most dumb down what they say to the families. Agreed. They dumb it down so much it doesn't make sense. And that any formal communications to the family would be from Dr. S. to me directly. I think I love this man. When we finished our talk, I felt like it's clear Dr. S. was doing everything he could to help Boone. There is always the future unknown to deal with, but he was in no way confused or indecisive about the corse to be taken.
He said he would see me in the ICU when he made rounds. I explained to him I had to leave by 12:30 because I had friends coming to the condo to help me get the rest of our stuff out. He promised me he would be there in time to see me before I had to go.
Back up in the ICU, I was telling Boone what happened, and said Dr S. had promised to be by in time for me to be here. The nurse in the room laughed out loud.
Boone was awake and alert and making his normal smart ass remarks, in between short rest periods. Ann and I were making another nurse laugh from the stories we were telling. It was a good morning.
Our friend Mike came in to visit. He was there to help me with the moving. Then Dr. S. and his entourage entered the room. It was 12:15. He basically had the same talk with Boone, Ann, Mike, and me that we had earlier. He's in charge. Boone's in a tough spot. He's gonna fix it if he can. All communications are going to be from him to me or Boone directly.
He poked around on Boone, did the normal check up. As he was leaving he said he wanted the catheter removed, mostly because it's exercise for Boone to have to deal with peeing. The lumbar puncture was going to happen, and hopefully Boone will be back on the ward tomorrow, blogging instead of me.
Early this morning I dropped by the Clinic to leave some paperwork and request a meeting with Dr. S.
They said they would text him with a request to call me.
I went to the ICU to see Boone. His color is better, only mildly yellow. His beard and 'stash are growing out pretty fast. The head hair is being slower, but it is coming back too. He was sleeping for the most part so I put my head down on the bed and tried to have a little cat nap.
My phone vibrated, but the call failed. It was a number I didn't have in my contacts. So I left the ICU, went to the main Atrium, and called. It was the clinic, Dr. S. got the message and will call. I explained that in the ICU, I can't get a cell signal anywhere on that floor. Nurse C said, to come on down to the clinic, Dr. S. was there seeing outpatients.
When I arrived they ushered me back to the infusion room. A large room with 4-5 chairs for patients to sit and get infused. I took a seat, and as soon as Dr. S. finished talking to the patient in the next room he came in to talk to me. He scooted his chair up close, knees to knees. I wanted to know where we are what's really going on, and why is there so much conflicting information.
He keeps total eye contact with you when you are talking. He said Boone is in a bad place right now. The spinal tap, or lumbar puncture, is to determine if there is a fungal or bacterial infection in his brain, or another type of Leukemia that sometimes can pop up in the brain. He clearly did not associate the seizure with the photopheresis. He said there appears to be something happening there and we need to find out what's going on. I told him Boone had been hit by a car at age 9 and had a scar on his head in the area they are seeing these "old clots". He just shook his head no. That's not it.
We discussed all the doctors and all the comments they've made that just seem strange and confusing. He in no way denied anything I said. What he told me was first of all, he is in charge. There is no other Dr. including Dr. H the ID doc that can over rule or change his orders. (Yeah!) He acknowledged that it looks like they are not communicating, and it's difficult because they can never all be in the same room at the same time. It's a 24 shift of doctors and rotations, so people can have days off. I totally get that. He said they are in close communication and he would make it clear to them who was in charge and to not make off hand remarks about something. Each, he said, have their own bedside manner and most dumb down what they say to the families. Agreed. They dumb it down so much it doesn't make sense. And that any formal communications to the family would be from Dr. S. to me directly. I think I love this man. When we finished our talk, I felt like it's clear Dr. S. was doing everything he could to help Boone. There is always the future unknown to deal with, but he was in no way confused or indecisive about the corse to be taken.
He said he would see me in the ICU when he made rounds. I explained to him I had to leave by 12:30 because I had friends coming to the condo to help me get the rest of our stuff out. He promised me he would be there in time to see me before I had to go.
Back up in the ICU, I was telling Boone what happened, and said Dr S. had promised to be by in time for me to be here. The nurse in the room laughed out loud.
Boone was awake and alert and making his normal smart ass remarks, in between short rest periods. Ann and I were making another nurse laugh from the stories we were telling. It was a good morning.
Our friend Mike came in to visit. He was there to help me with the moving. Then Dr. S. and his entourage entered the room. It was 12:15. He basically had the same talk with Boone, Ann, Mike, and me that we had earlier. He's in charge. Boone's in a tough spot. He's gonna fix it if he can. All communications are going to be from him to me or Boone directly.
He poked around on Boone, did the normal check up. As he was leaving he said he wanted the catheter removed, mostly because it's exercise for Boone to have to deal with peeing. The lumbar puncture was going to happen, and hopefully Boone will be back on the ward tomorrow, blogging instead of me.
Monday, June 24, 2013
Pauline here.
I just don't know what to say.
Boone was taken off the respirator today, put on regular hose O2, and wonderfully taken off the Propofol. When I was having to leave he was just coming around. His sisters were both there with him. Reports are good that he is alert, and presumably comfortable.
It's so hard to get any sort of communications through in the ICU. I believe that floor is nothing but different ICU units; you can't get a decent signal unless you go outside. If we are lucky, we might get a single bar for a few seconds.
Stella, I was totally wrong in my assessment of his violent head shaking. I guess that's what I would have been trying to say if it were me. Today when he was able to nod responses, I asked him if he was giving up.
His eyes opened wide, and a puzzled NO shake came forth. So what do I know? Apparently not my husband of 36 years. When I said everything would be ok, he nodded yes.
He then tried to say 3 words to me. I repeated what I thought he was mouthing. No. Tried several times but I just could not understand. He looked like it was important. His hands are (hopefully were by now) restrained...Oh my...thats what he was mouthing: Un Tie Me....oh no!!
The curtain fell and time passed.....
After so many texts and a phone call, I found out Dr. S arrived shortly after I had to leave. Ann was straightening up Boone's covers and Dr. S saw he was in restraints. He immediately ordered them off. There was no need for them because Boone is definitely aware of what's going on and who all is in the room and he is not going to attack his tubing.
He was taken off the regular O2, and did fine.
The Infectious Disease Dr came in and went over Boone from head to toe and said she saw no indication of any infection. She wants the MRI of his brain to be repeated, because she said he was clearly moving during the scan and he was so sedated they weren't going to see anything anyway.
So.... why didn't the Neurologist notice this??
Ann said apparently the Neurologist had been unaware that the seizure happened during the photopheresis procedure. Seizures are a known side effect of the procedure. Maybe there's just too many doctors that aren't talking together but only getting snippets of information. Boone seems to always have his episodes on Friday and this time close to shift change. Not good timing.
The ID Dr also over ruled the talk about doing a spinal tap to see if they can isolate the fungus or bacteria that appears to be causing all these bad reactions. It made no sense to me either, or Ann. So glad she was there to query the Dr. about it.
In talking to Ann, her memory of when Boone was hit by a car at age 9 on the head, sounds like it is very close to where Dr. W said the old stroke was appearing. Could it just be the old bumper on the noggin?
The ID Dr. is supposed to round in the morning. Hopefully I can catch her and Dr S.
It's time to get everyone in one room and have a chat about what's really going on. To me, and again what do I know, it seems the liver is the big issue right now. He is incredibly yellow. His tears looked yellow to me. His urine is dark orange. His skin is between dijon and yellow mustard. We know he's had high bilirubin levels for a while.
Hopefully Boone will be back on the BMT ward tomorrow. He seems to be back to where he was Friday before all this upset. Wish I could call him...but his phone, lap top, and pad are all locked up in someone's office on the ward for safe keeping.
I just don't know what to say.
Boone was taken off the respirator today, put on regular hose O2, and wonderfully taken off the Propofol. When I was having to leave he was just coming around. His sisters were both there with him. Reports are good that he is alert, and presumably comfortable.
It's so hard to get any sort of communications through in the ICU. I believe that floor is nothing but different ICU units; you can't get a decent signal unless you go outside. If we are lucky, we might get a single bar for a few seconds.
Stella, I was totally wrong in my assessment of his violent head shaking. I guess that's what I would have been trying to say if it were me. Today when he was able to nod responses, I asked him if he was giving up.
His eyes opened wide, and a puzzled NO shake came forth. So what do I know? Apparently not my husband of 36 years. When I said everything would be ok, he nodded yes.
He then tried to say 3 words to me. I repeated what I thought he was mouthing. No. Tried several times but I just could not understand. He looked like it was important. His hands are (hopefully were by now) restrained...Oh my...thats what he was mouthing: Un Tie Me....oh no!!
The curtain fell and time passed.....
After so many texts and a phone call, I found out Dr. S arrived shortly after I had to leave. Ann was straightening up Boone's covers and Dr. S saw he was in restraints. He immediately ordered them off. There was no need for them because Boone is definitely aware of what's going on and who all is in the room and he is not going to attack his tubing.
He was taken off the regular O2, and did fine.
The Infectious Disease Dr came in and went over Boone from head to toe and said she saw no indication of any infection. She wants the MRI of his brain to be repeated, because she said he was clearly moving during the scan and he was so sedated they weren't going to see anything anyway.
So.... why didn't the Neurologist notice this??
Ann said apparently the Neurologist had been unaware that the seizure happened during the photopheresis procedure. Seizures are a known side effect of the procedure. Maybe there's just too many doctors that aren't talking together but only getting snippets of information. Boone seems to always have his episodes on Friday and this time close to shift change. Not good timing.
The ID Dr also over ruled the talk about doing a spinal tap to see if they can isolate the fungus or bacteria that appears to be causing all these bad reactions. It made no sense to me either, or Ann. So glad she was there to query the Dr. about it.
In talking to Ann, her memory of when Boone was hit by a car at age 9 on the head, sounds like it is very close to where Dr. W said the old stroke was appearing. Could it just be the old bumper on the noggin?
The ID Dr. is supposed to round in the morning. Hopefully I can catch her and Dr S.
It's time to get everyone in one room and have a chat about what's really going on. To me, and again what do I know, it seems the liver is the big issue right now. He is incredibly yellow. His tears looked yellow to me. His urine is dark orange. His skin is between dijon and yellow mustard. We know he's had high bilirubin levels for a while.
Hopefully Boone will be back on the BMT ward tomorrow. He seems to be back to where he was Friday before all this upset. Wish I could call him...but his phone, lap top, and pad are all locked up in someone's office on the ward for safe keeping.
Sunday, June 23, 2013
Me again.
I met with Dr. B this morning, again in the BMT ward, catching him as he was making rounds. He was clearly irritated and said he would see me in the ICU; but still he answered my questions. I told him I had gotten word that Boone's liver was ok. He looked at me like I had lost my mind. No the liver is not ok. I asked about prognosis. He said the same as it was yesterday. Then he lightened up a bit and said he had not yet talked to the Neurologist about the MRI results.
When I arrived at the ICU, Boone was the same as when I left; off in Propofol land. I held his hand, rubbed his arm, and had a good cry. I put my head down on his bed where my cheek could touch the back of his hand. The droning of the HEPA filter machine was lulling me to sleep. I didn't bother to look up when someone came in. No need to; all nurses, or techs, or housekeepers; a constant steady stream.
Then the Neurologist came in and in a loud commanding voice said "Mr. Gregory, how are you this morning?" Boone's eyes opened and he almost sat up. I guess I shrieked louder than I realized, be cause the doctor said "You weren't expecting that were you?" WT*!! Hell no! Scared the crap out of me. But Boone was back in Propofol land in seconds. The doctor started talking to him more, he gets yes nods, and nos from mild head wobbling as appropriate, so obviously Boone was hearing and understanding. The neurologist said he was going to order an MRI for Monday morning. I told him they took him away yesterday and did one, that Dr. B had ordered it. Dr W. then went out to look at the MRI.
Shortly he returned and said that it didn't really show much that wasn't apparent on the CT scan; he was ordering an EEG. He squeezed Boone's feet and hands and got Boone to squeeze back, then told him to squeeze my hand, and so he did. I squeezed back and Boone did too. Dr. W's assessment was that Boone was a tiny bit better today than yesterday. He said the Propofol had to be stopped by Dr. O since he was the one that started it.
About 30 minutes later a nurse from Neurology came in to do the EEG. I asked if I could watch her screen as she did it. That was fine with her, but she could not answer any questions if I had any. I asked, is that because you are not allowed or because you don't know? Not allowed. She knows a good bit about the scan image of course, but doesn't know the fine points. She proceeded to hook him up to a couple dozen sensors. She put a cap on him, marked his head all over with a red pen, then started glueing and taping each one in place. Just as she finished the the alarm went off on the monitor dripping the Propofol. The ICU nurse came in to change out the bottles. The Neurology nurse had her delay the exchange until after the EEG. She said they wouldn't get any sort of reasonable data if he were on the drug. I got up then and went around to her monitor. You could see his brain activity increasing over a period of about a minute, then she said ok looks likes he's clear and started the test.
She would holler across the room at him to open his eyes, the sensors went crazy. He'd shut his eyes everything would calm down. She went over and pinched his right big toe, the sensors again did their bouncing about. "Good, he feels pain" she said. Then she went to squeeze his left big toe, the one that is very sore from the nail falling off. I didn't say anything, I wanted to see what would happen. It looked like a 12 on the Richter scale. Then I told her about the nail. "Well good"... The test went on for about 15-20 minutes. By this time Boone was beginning to wake up a bit. He gagged some because of the ventilator but was calm. He was looking around the room and saw me standing there trying my best to smile. She unhooked him and departed.
I decided this might be my only chance to talk to him without him being so drugged. I stood beside him and asked if he could hear me. He nodded yes. I said "You are going the alright, don't worry". He started violently shaking his head no. I rubbed his head and reassured him he would be fine. Again he shook his head no as hard as he could and began to cry. I said "You know I love you, don't you?" he nodded yes and the tears continued to flow. He looked at me, and then they started gushing. Again I told him he would be ok. Again he was adament , that he was not going to get better. The ICU nurse came in and restarted the Propofol and his tears stopped.
Dr B came in, said he had spoken with Dr. W about the MRI and there were no signs of infection, still just these spots that looked like old strokes. He seemed upbeat and maybe things were better, then said he wanted to do a spinal tap to check for bacteria. I asked him at what point do we throw in the towel. He paused looked me in the eyes and said Dr S will be rounding tomorrow. We - not just me- would talk to him about further treatments and possible outcomes. He said Boone has less than 1% chance now. Obviously, they want to succeed and try everything, but I'm not so sure a spinal tap is worth the pain and agony to Boone. If they find a fungal or bacterial infection and the Dr. says he can treat it, ok fine, but to what end? If the liver is "shot" what does it matter? Not to mention the infection risk from the procedure is extremely high. He's on so many anti fungals, anti bacterials, anti virals, and he obviously feels like he's not going to make it, at some point, when do you just say no? Everything they've tried so far has had a negative reaction. He can't breathe without the ventilator machine, he can't eat except by IV, and he has zero quality of life.
It's like that old seventies movie They Shoot Horses Don't They? I wouldn't put my dog through such agony.
Several friends came by to say whatever they felt they needed to say. I try to step outside to give them privacy. Most were satisfied if they got any response. They just wanted him to know they were there and they care deeply for him.
I guess tomorrow morning with Dr. S is going to tell the tale. I'm not sure I'm ready for what I expect him to say.
I met with Dr. B this morning, again in the BMT ward, catching him as he was making rounds. He was clearly irritated and said he would see me in the ICU; but still he answered my questions. I told him I had gotten word that Boone's liver was ok. He looked at me like I had lost my mind. No the liver is not ok. I asked about prognosis. He said the same as it was yesterday. Then he lightened up a bit and said he had not yet talked to the Neurologist about the MRI results.
When I arrived at the ICU, Boone was the same as when I left; off in Propofol land. I held his hand, rubbed his arm, and had a good cry. I put my head down on his bed where my cheek could touch the back of his hand. The droning of the HEPA filter machine was lulling me to sleep. I didn't bother to look up when someone came in. No need to; all nurses, or techs, or housekeepers; a constant steady stream.
Then the Neurologist came in and in a loud commanding voice said "Mr. Gregory, how are you this morning?" Boone's eyes opened and he almost sat up. I guess I shrieked louder than I realized, be cause the doctor said "You weren't expecting that were you?" WT*!! Hell no! Scared the crap out of me. But Boone was back in Propofol land in seconds. The doctor started talking to him more, he gets yes nods, and nos from mild head wobbling as appropriate, so obviously Boone was hearing and understanding. The neurologist said he was going to order an MRI for Monday morning. I told him they took him away yesterday and did one, that Dr. B had ordered it. Dr W. then went out to look at the MRI.
Shortly he returned and said that it didn't really show much that wasn't apparent on the CT scan; he was ordering an EEG. He squeezed Boone's feet and hands and got Boone to squeeze back, then told him to squeeze my hand, and so he did. I squeezed back and Boone did too. Dr. W's assessment was that Boone was a tiny bit better today than yesterday. He said the Propofol had to be stopped by Dr. O since he was the one that started it.
About 30 minutes later a nurse from Neurology came in to do the EEG. I asked if I could watch her screen as she did it. That was fine with her, but she could not answer any questions if I had any. I asked, is that because you are not allowed or because you don't know? Not allowed. She knows a good bit about the scan image of course, but doesn't know the fine points. She proceeded to hook him up to a couple dozen sensors. She put a cap on him, marked his head all over with a red pen, then started glueing and taping each one in place. Just as she finished the the alarm went off on the monitor dripping the Propofol. The ICU nurse came in to change out the bottles. The Neurology nurse had her delay the exchange until after the EEG. She said they wouldn't get any sort of reasonable data if he were on the drug. I got up then and went around to her monitor. You could see his brain activity increasing over a period of about a minute, then she said ok looks likes he's clear and started the test.
She would holler across the room at him to open his eyes, the sensors went crazy. He'd shut his eyes everything would calm down. She went over and pinched his right big toe, the sensors again did their bouncing about. "Good, he feels pain" she said. Then she went to squeeze his left big toe, the one that is very sore from the nail falling off. I didn't say anything, I wanted to see what would happen. It looked like a 12 on the Richter scale. Then I told her about the nail. "Well good"... The test went on for about 15-20 minutes. By this time Boone was beginning to wake up a bit. He gagged some because of the ventilator but was calm. He was looking around the room and saw me standing there trying my best to smile. She unhooked him and departed.
I decided this might be my only chance to talk to him without him being so drugged. I stood beside him and asked if he could hear me. He nodded yes. I said "You are going the alright, don't worry". He started violently shaking his head no. I rubbed his head and reassured him he would be fine. Again he shook his head no as hard as he could and began to cry. I said "You know I love you, don't you?" he nodded yes and the tears continued to flow. He looked at me, and then they started gushing. Again I told him he would be ok. Again he was adament , that he was not going to get better. The ICU nurse came in and restarted the Propofol and his tears stopped.
Dr B came in, said he had spoken with Dr. W about the MRI and there were no signs of infection, still just these spots that looked like old strokes. He seemed upbeat and maybe things were better, then said he wanted to do a spinal tap to check for bacteria. I asked him at what point do we throw in the towel. He paused looked me in the eyes and said Dr S will be rounding tomorrow. We - not just me- would talk to him about further treatments and possible outcomes. He said Boone has less than 1% chance now. Obviously, they want to succeed and try everything, but I'm not so sure a spinal tap is worth the pain and agony to Boone. If they find a fungal or bacterial infection and the Dr. says he can treat it, ok fine, but to what end? If the liver is "shot" what does it matter? Not to mention the infection risk from the procedure is extremely high. He's on so many anti fungals, anti bacterials, anti virals, and he obviously feels like he's not going to make it, at some point, when do you just say no? Everything they've tried so far has had a negative reaction. He can't breathe without the ventilator machine, he can't eat except by IV, and he has zero quality of life.
It's like that old seventies movie They Shoot Horses Don't They? I wouldn't put my dog through such agony.
Several friends came by to say whatever they felt they needed to say. I try to step outside to give them privacy. Most were satisfied if they got any response. They just wanted him to know they were there and they care deeply for him.
I guess tomorrow morning with Dr. S is going to tell the tale. I'm not sure I'm ready for what I expect him to say.
Saturday, June 22, 2013
Dear Friends, Pauline here.
If you read the previous set of comments you may have noticed the ICU lurking in there. Shortly after Boone posted yesterday, he had a seizure. I wasn't there, but my understanding is that it happened during the Photopheresis. (Photopheresis is simply running any liquid through a UV light filter, just like is done in aquariums and ponds. The UV light kills bacteria.)
Dr O in the ICU put Boone on Propofol (the Michael Jackson drug) to stop the seizure. The hospital tried to reach me, but at that time I had plugged in the phone to charge, and gone outside so they called Boone's brother Harold. Harold's text to call immediately sent me flying to the hospital at about 7:30 PM. His night nurse on the BMT ward Nurse E, that he dearly loves came to the ICU to see him. They enjoyed talking movies, and music, and books. Boone cherished the visits from her when there was nothing going on she had to tend to.
When I arrived Harold and Randy were there. Boone was hooked up to a ventilator; a lot more scary looking than other ventilators. It was strapped onto his head, it kinda reminded me of the mask that Anthony Hopkins wore in Silence of the Lambs. It held the ventilator tubes into his nose and the hydrating tubes into his mouth. It was hooked up to it's own special computer/ monitor. Boone was very yellow and bloated. The yellow was deeper than it has been, the bloating was about the same, he just looks very overweight around his face and neck.
The ICU doc; Dr O came around to check on him and told us that Boone had been non responsive before the Propofol. The ventilator was there because his brain was not telling his lungs to breathe. Then he just said all (we) could do was just pray and pray hard. We all cried together and Harold and I spoke words that we know we are going to loose him, and they took him away for a CT scan.
Later Dr W, the Neurologist looking at the scan called to the nurses desk and they put me on the phone. He said Boone had apparently had a baby stroke sometime in the past, and there was some clumping there and a couple of other spots, but nothing that looked terribly alarming. He said that when a person's body is under this much stress, that the brain begins to shut down; a normal process of dying.
After that, I had to go home because of the stress, and critters, and frankly I have to sleep occasionally. A 1 hour drive in the Roadster with the top down did me a world of good. I needed air, lots of air, and there was plenty of it on an empty interstate in the late night hours. I got home, took my sleepy pills and laid down on the bare mattress (Our furniture was moved today from the condo to the farm) in my clothes, with the phone in it's charger right beside me, and stared at the ceiling most of the night.
Early this morning I caught Dr. B of the Transplant Team while he was making rounds in the BMT unit. He said they were very concerned about Boone. The Photopheresis can cause blood clots. He was ordering an MRI to look for a possible fungal infection in Boone's brain. He said if there is one, that's the end. Boone will be gone in a few days. If it turns out that it is a reaction to the immunosuppressant, then they could adjust the dosage to see if that might help. Then it might be a week or so. I asked him about the Bilirubin levels and Boone being so yellow. My question was "so basically his liver is shot?" he said yes. He then said he didn't think Boone would ever leave the hospital. He's had so many complications and bad reactions to everything they try. This man that I previously called an Ass, hugged me and said he was very sorry. I believe he truly is. All the Oncologists couch everything they say to put it in the best light possible; but this was direct and to the point.
When I walked into Boone's ICU room I was taken aback by the blood coming out of his mouth and nose. The nurse was prepared. Before I said anything, she said it just looks bad because it"s irritating his sinuses, but it's Ok, don't worry.
I pulled the visitor chair up to the bed and took Boone's hand. It was very cool, his arm was cool, his head under the cap knitted for cancer patients by little old ladies, was toasty warm. I got right up to his ear and fairly loudly said "Boone, It's me, can you hear me?" There was the slightest of nods; yes he could. Then I asked if he could feel me touching him. Another tiny nod yes. So I told him the things I needed to say and rubbed his head. He likes a good head rubbing. There was no other response. I rubbed on his arms and held onto his hand; there was no squeeze back.
After his normal rounds on the BMT ward, Dr. B came up to see Boone. He checked his feet, hands, arms, looked at the ostomy bag, the pee bag, checked all the ports, and looked over all the tubes and bags, then went to listen to his heart. I swear, when he went to listen to Boone's backside, Boone raised his shoulder a tiny bit. Has it become an automatic response? Even his breathing rate changed to the typical deep breaths. Nurse M, from the BMT ward came up to see him. She was clearly worried. I can't imagine doing the job these BMT nurses do, especially since the patients are there for so long, and they meet all the family and friends, and get to know the patient's life history, then they're gone. She was a bit stunned because he had been doing better and was trying so hard to do everything the doctors asked him to do.
Harold and Randy were both there by mid morning. We discussed possible final arrangements.
Our friend Rosie, who used to work the Oncology ward at Vanderbilt, came by. She went in and talked to Boone, giving him a pep talk then bless her heart, she got me out of there and to a local dive for a great fish sandwich. (Yesterday all I had to eat was Snickers Minis. That's my primary diet recently; I've lost about 20 pounds.) She thinks the situation is grim.
After lunch I went back up to the ICU and sat beside Boone. I held his hand, rubbed his arm, and had a good long cry. It wasn't too long before the nurses and techs were making him portable to go get his MRI.
Harold and Randy were at the hospital, so I drove home to try to get some sleep.
Harold texted later that the liver and kidneys looked OK and that their sister Linda had arrived.
So, I guess we don't really know all the facts yet, and please forgive me Harold if I twisted things, especially the sequence of events. I just cannot think straight. I can't complete a sentence; when talking, without forgetting the point.
It's all so very sad. I think if anyone out there wants to speak to Boone again, they should get on it. Maybe one of you can snap him out of this.
Im going to bed. Hope my Sleepy Time Time pills work tonight. I want try to catch Dr. B again for a private talk. He is a brilliant man. I'm sorry I called him an Ass.
If you read the previous set of comments you may have noticed the ICU lurking in there. Shortly after Boone posted yesterday, he had a seizure. I wasn't there, but my understanding is that it happened during the Photopheresis. (Photopheresis is simply running any liquid through a UV light filter, just like is done in aquariums and ponds. The UV light kills bacteria.)
Dr O in the ICU put Boone on Propofol (the Michael Jackson drug) to stop the seizure. The hospital tried to reach me, but at that time I had plugged in the phone to charge, and gone outside so they called Boone's brother Harold. Harold's text to call immediately sent me flying to the hospital at about 7:30 PM. His night nurse on the BMT ward Nurse E, that he dearly loves came to the ICU to see him. They enjoyed talking movies, and music, and books. Boone cherished the visits from her when there was nothing going on she had to tend to.
When I arrived Harold and Randy were there. Boone was hooked up to a ventilator; a lot more scary looking than other ventilators. It was strapped onto his head, it kinda reminded me of the mask that Anthony Hopkins wore in Silence of the Lambs. It held the ventilator tubes into his nose and the hydrating tubes into his mouth. It was hooked up to it's own special computer/ monitor. Boone was very yellow and bloated. The yellow was deeper than it has been, the bloating was about the same, he just looks very overweight around his face and neck.
The ICU doc; Dr O came around to check on him and told us that Boone had been non responsive before the Propofol. The ventilator was there because his brain was not telling his lungs to breathe. Then he just said all (we) could do was just pray and pray hard. We all cried together and Harold and I spoke words that we know we are going to loose him, and they took him away for a CT scan.
Later Dr W, the Neurologist looking at the scan called to the nurses desk and they put me on the phone. He said Boone had apparently had a baby stroke sometime in the past, and there was some clumping there and a couple of other spots, but nothing that looked terribly alarming. He said that when a person's body is under this much stress, that the brain begins to shut down; a normal process of dying.
After that, I had to go home because of the stress, and critters, and frankly I have to sleep occasionally. A 1 hour drive in the Roadster with the top down did me a world of good. I needed air, lots of air, and there was plenty of it on an empty interstate in the late night hours. I got home, took my sleepy pills and laid down on the bare mattress (Our furniture was moved today from the condo to the farm) in my clothes, with the phone in it's charger right beside me, and stared at the ceiling most of the night.
Early this morning I caught Dr. B of the Transplant Team while he was making rounds in the BMT unit. He said they were very concerned about Boone. The Photopheresis can cause blood clots. He was ordering an MRI to look for a possible fungal infection in Boone's brain. He said if there is one, that's the end. Boone will be gone in a few days. If it turns out that it is a reaction to the immunosuppressant, then they could adjust the dosage to see if that might help. Then it might be a week or so. I asked him about the Bilirubin levels and Boone being so yellow. My question was "so basically his liver is shot?" he said yes. He then said he didn't think Boone would ever leave the hospital. He's had so many complications and bad reactions to everything they try. This man that I previously called an Ass, hugged me and said he was very sorry. I believe he truly is. All the Oncologists couch everything they say to put it in the best light possible; but this was direct and to the point.
When I walked into Boone's ICU room I was taken aback by the blood coming out of his mouth and nose. The nurse was prepared. Before I said anything, she said it just looks bad because it"s irritating his sinuses, but it's Ok, don't worry.
I pulled the visitor chair up to the bed and took Boone's hand. It was very cool, his arm was cool, his head under the cap knitted for cancer patients by little old ladies, was toasty warm. I got right up to his ear and fairly loudly said "Boone, It's me, can you hear me?" There was the slightest of nods; yes he could. Then I asked if he could feel me touching him. Another tiny nod yes. So I told him the things I needed to say and rubbed his head. He likes a good head rubbing. There was no other response. I rubbed on his arms and held onto his hand; there was no squeeze back.
After his normal rounds on the BMT ward, Dr. B came up to see Boone. He checked his feet, hands, arms, looked at the ostomy bag, the pee bag, checked all the ports, and looked over all the tubes and bags, then went to listen to his heart. I swear, when he went to listen to Boone's backside, Boone raised his shoulder a tiny bit. Has it become an automatic response? Even his breathing rate changed to the typical deep breaths. Nurse M, from the BMT ward came up to see him. She was clearly worried. I can't imagine doing the job these BMT nurses do, especially since the patients are there for so long, and they meet all the family and friends, and get to know the patient's life history, then they're gone. She was a bit stunned because he had been doing better and was trying so hard to do everything the doctors asked him to do.
Harold and Randy were both there by mid morning. We discussed possible final arrangements.
Our friend Rosie, who used to work the Oncology ward at Vanderbilt, came by. She went in and talked to Boone, giving him a pep talk then bless her heart, she got me out of there and to a local dive for a great fish sandwich. (Yesterday all I had to eat was Snickers Minis. That's my primary diet recently; I've lost about 20 pounds.) She thinks the situation is grim.
After lunch I went back up to the ICU and sat beside Boone. I held his hand, rubbed his arm, and had a good long cry. It wasn't too long before the nurses and techs were making him portable to go get his MRI.
Harold and Randy were at the hospital, so I drove home to try to get some sleep.
Harold texted later that the liver and kidneys looked OK and that their sister Linda had arrived.
So, I guess we don't really know all the facts yet, and please forgive me Harold if I twisted things, especially the sequence of events. I just cannot think straight. I can't complete a sentence; when talking, without forgetting the point.
It's all so very sad. I think if anyone out there wants to speak to Boone again, they should get on it. Maybe one of you can snap him out of this.
Im going to bed. Hope my Sleepy Time Time pills work tonight. I want try to catch Dr. B again for a private talk. He is a brilliant man. I'm sorry I called him an Ass.
Friday, June 21, 2013
Friday, June 21, 2103
FOUR-FIFTEEN PM
The port for the photopheresis was found bleeding late this morning. Pretty bad actually. Long enough that it had some large blood clots. After a lot of new bandages, some ice and some pressure it seems to have stopped but still looks nasty. They have decided not to change the dressing until after the treatment at about 4 PM so that it doesn't start bleeding again. I glad because I'm anxious to try the new procedure. I'd never hear of it before. As I understand it they take out some white blood cells expose them to light and put them back. Guess I'll learn the details shortly. That will be good because we've never talked about this procedure in the office, did I mention I'm an Architect, so I can pass on some new info. That is provided I get back there. Not sure about that but I sure as hell want the chance and the choice. LSM if you are reading this I am planning on coming back. Just so you know.
Dr. B had the rounds today. Since I'm still getting blood in my stool he put me back on NPO. I do with that would settle down. Not eating at all is not a major deal but going back and forth really leaves me hungry. I'd almost rather not eat, almost.
I'll try to pass on the info about the photopheresis later.
Boone
FOUR-FIFTEEN PM
The port for the photopheresis was found bleeding late this morning. Pretty bad actually. Long enough that it had some large blood clots. After a lot of new bandages, some ice and some pressure it seems to have stopped but still looks nasty. They have decided not to change the dressing until after the treatment at about 4 PM so that it doesn't start bleeding again. I glad because I'm anxious to try the new procedure. I'd never hear of it before. As I understand it they take out some white blood cells expose them to light and put them back. Guess I'll learn the details shortly. That will be good because we've never talked about this procedure in the office, did I mention I'm an Architect, so I can pass on some new info. That is provided I get back there. Not sure about that but I sure as hell want the chance and the choice. LSM if you are reading this I am planning on coming back. Just so you know.
Dr. B had the rounds today. Since I'm still getting blood in my stool he put me back on NPO. I do with that would settle down. Not eating at all is not a major deal but going back and forth really leaves me hungry. I'd almost rather not eat, almost.
I'll try to pass on the info about the photopheresis later.
Boone
Friday, June 21, 2130
FIVE-THIRTY IN THE MORNING
Yesterday I was big time sleeping at this time. I was today up until about a half an hour ago. Nurse E cam in to draw labs and found I had bled around the new port site. She and the charge Nurse, Nurse D. got it cleaned up and put a bandage on so the proper folks can check it later. I think I have a road trip to see them anyway.
Nurse E then found that my ostomy bag was leaking a bit, complete with a little blood. So they got that changed along with my gown and bedclothes.
Just as E was finishing up, the Lab Tech Ms. F, one of my favorite folks here, came in to draw a different set of vials of blood. Ms. F is normally spot on time a 4AM but running late due to picking up another tech's vacation load.
So guess what, I'm wide awake. It's actually is kinda nice given how much I slept yesterday. Nothing else to tell you so far. Let's all go out and have a great day. Well I can't go out but maybe I'll get the great day part. That would be a really nice change of pace.
Probably talk to you later.
Boone
FIVE-THIRTY IN THE MORNING
Yesterday I was big time sleeping at this time. I was today up until about a half an hour ago. Nurse E cam in to draw labs and found I had bled around the new port site. She and the charge Nurse, Nurse D. got it cleaned up and put a bandage on so the proper folks can check it later. I think I have a road trip to see them anyway.
Nurse E then found that my ostomy bag was leaking a bit, complete with a little blood. So they got that changed along with my gown and bedclothes.
Just as E was finishing up, the Lab Tech Ms. F, one of my favorite folks here, came in to draw a different set of vials of blood. Ms. F is normally spot on time a 4AM but running late due to picking up another tech's vacation load.
So guess what, I'm wide awake. It's actually is kinda nice given how much I slept yesterday. Nothing else to tell you so far. Let's all go out and have a great day. Well I can't go out but maybe I'll get the great day part. That would be a really nice change of pace.
Probably talk to you later.
Boone
Thursday, June 20, 2013
Thursday, June 20, 2013
TIRED, TIRED, TIRED
I think I have fully completed the conversion to night person. I slept soundly last night and most of the day. The nurse was having a busy day so I got a nice sponge bath but no walking today. The procedure to insert the new lines for the photopheresis kept getting delayed. I finally got to imaging about noon but they were still swamped so it took the better part of another hour to get a room so I didn't get back to my room until almost five. But at least it was a road trip, some time away from the same old room. They did the procedure under sedation in a R/F room and everything went fine. I have two new lines in my chest under my neck. One with a red cap, the other blue. Artery and vein. Tomorrow I get another road trip for the first treatment. I'm quite interested to see exactly how it's done. Two of the more senior nurses tell me that they have seen the procedure work so I've got my hopes up a bit. Maybe this time we see some progress. Maybe not but I resigned myself to the fact that that is the way things are, at least for now I have just got to hold out and wait for the solution, at least the first steps of one to occur.
I hope things are going well for my fellow travelers. We'll have to figure out a way to meet for a celebration dinner after our battles are won. I'll buy.
Boone
TIRED, TIRED, TIRED
I think I have fully completed the conversion to night person. I slept soundly last night and most of the day. The nurse was having a busy day so I got a nice sponge bath but no walking today. The procedure to insert the new lines for the photopheresis kept getting delayed. I finally got to imaging about noon but they were still swamped so it took the better part of another hour to get a room so I didn't get back to my room until almost five. But at least it was a road trip, some time away from the same old room. They did the procedure under sedation in a R/F room and everything went fine. I have two new lines in my chest under my neck. One with a red cap, the other blue. Artery and vein. Tomorrow I get another road trip for the first treatment. I'm quite interested to see exactly how it's done. Two of the more senior nurses tell me that they have seen the procedure work so I've got my hopes up a bit. Maybe this time we see some progress. Maybe not but I resigned myself to the fact that that is the way things are, at least for now I have just got to hold out and wait for the solution, at least the first steps of one to occur.
I hope things are going well for my fellow travelers. We'll have to figure out a way to meet for a celebration dinner after our battles are won. I'll buy.
Boone
Wednesday, June 19, 2013
Wednesday, June 19, 2013
ANOTHER TEST OF THE SYSTEM
Today started pretty well. Nurse L (one of three Nurse L's) took me on a walk. I managed three laps, not great but not bad. It's the most I've had in one pass so far so it's progress. My legs are still week so my shoulders carry a lot of the wait and actually take longer to recover than my legs. They we had a nice, if somewhat cold, sponge bath and she changed the bed linens. Basically walked me, washed me and put me back in my stall.
Dr. B just came by on rounds and had news I didn't expect. They are putting me on the GVHD Grade 1 diet again, clear liquids, to see if the GI track can hold on to some of it. You know we have tried this before without success. Here's hoping that with the lower steroid levels it will work. If it does not work then it is time to acknowledge that that treatment is not going to be effective. That is not good because it is the standard treatment that is supposed to work the best. If this go around fails they are going to try a photopheresis treatment. That involves putting a small catheter in my chest and running the blood out through a light box and back. Apparently it helps the blood fight the GVHD. The treatment lasts a couple of hours at a time and will probably go on for a few days. I forgot to ask about the frequency of treatment. Hopefully I don't have to find out.
So we are back to wait and see and hope that the GI track cooperates. I'm hopeful but honestly not confident about the GI track cooperating given the past chances. I wish I felt better about that but I just don't.
That's all I know at this point. I'll let you know how it turns out. Here's hoping for the best.
Boone
P.S. They have already put in the order for the Photopheresis, just in case. Nurse H says that in this case a doctor installs the line, not a Tech like you get for a PICC line. I eaten most of my lunch and a lot of it has already passed through, not all of it but enough that I'm not very hopeful about any remaining behind. Nurse says many people get the light treatment so It's one more round of hoping for the best. Getting to eat is the goal and it's nice but some sign of progress would be oh so much better. Stella referenced Sisyphus in one of her comments and I'm really beginning to identify with the guy. I've got to find a way to get this rock to the other side and send it flying downhill.
ANOTHER TEST OF THE SYSTEM
Today started pretty well. Nurse L (one of three Nurse L's) took me on a walk. I managed three laps, not great but not bad. It's the most I've had in one pass so far so it's progress. My legs are still week so my shoulders carry a lot of the wait and actually take longer to recover than my legs. They we had a nice, if somewhat cold, sponge bath and she changed the bed linens. Basically walked me, washed me and put me back in my stall.
Dr. B just came by on rounds and had news I didn't expect. They are putting me on the GVHD Grade 1 diet again, clear liquids, to see if the GI track can hold on to some of it. You know we have tried this before without success. Here's hoping that with the lower steroid levels it will work. If it does not work then it is time to acknowledge that that treatment is not going to be effective. That is not good because it is the standard treatment that is supposed to work the best. If this go around fails they are going to try a photopheresis treatment. That involves putting a small catheter in my chest and running the blood out through a light box and back. Apparently it helps the blood fight the GVHD. The treatment lasts a couple of hours at a time and will probably go on for a few days. I forgot to ask about the frequency of treatment. Hopefully I don't have to find out.
So we are back to wait and see and hope that the GI track cooperates. I'm hopeful but honestly not confident about the GI track cooperating given the past chances. I wish I felt better about that but I just don't.
That's all I know at this point. I'll let you know how it turns out. Here's hoping for the best.
Boone
P.S. They have already put in the order for the Photopheresis, just in case. Nurse H says that in this case a doctor installs the line, not a Tech like you get for a PICC line. I eaten most of my lunch and a lot of it has already passed through, not all of it but enough that I'm not very hopeful about any remaining behind. Nurse says many people get the light treatment so It's one more round of hoping for the best. Getting to eat is the goal and it's nice but some sign of progress would be oh so much better. Stella referenced Sisyphus in one of her comments and I'm really beginning to identify with the guy. I've got to find a way to get this rock to the other side and send it flying downhill.
Tuesday, June 18, 2013
Tuesday, June 18, 2013
I'M NOT QUITE SURE WHERE THIS IS GOING
I'm not sure what happened yesterday afternoon. I never excepted this blog to go quite so personal. I'm not an extrovert. While I have very definite opinions on lots of subjects I'm not one to go spouting them off, especially in a public forum where I know folks like my friend, fellow transplant recipient and client Mr. S read what I write. What am I thinking?
I guess what I'm thinking is I have nothing to loose. My friend could kick me off the account but for that to happen I have to be out of here and cured. That is a trade I'll jump one. Some of you, including ones I love, my take some offense or at least cringe at something I say but I'm sure the love will remain. In any case I have a feeling things may get a bit deeper around here. It's a hard battle so I may be doing a lot of screaming.
Regarding the comments from the last post please allow me a few direct responses.
Stella, you never cease to amaze me. Very high on my bucket list now is a visit to your house. We promise to call first. The song I was thinking about is "When September Ends". It is a acoustic number written and sung by Billy Joe Armstrong after his father passed. You can easily find the video on the interwebz.
Bmax I do miss our discussions. Not to many folks are up to debates anymore, particularly civil ones. Very much looking forward to the next time we meet.
TLS I had no idea that you were lurking out there. Thanks for that last batch of music. Are you working on any new stuff of your own? I'd love to hear it if you are. Thanks for being there my friend and teacher.
And Donor Girl. I'm glad you believe in yelling at God. I have done it my self. For some reason I feel compelled to let you and the others out there know that if I was a believer I would not behave any differently than I do now. And I believe it is possible that one day I open my eyes and find myself standing before God, the God you believe in. I will be very surprised but I know from quantum physics that lots of surprising things are possible not matter how improbable. If I take the Bible literally then that God will condemn me to Hell, not upon the basis of how I acted but because I didn't follow some ritual (I know I was baptized but I don't believe that one counts anymore) and didn't acknowledge him/her to be my king. Condemning me to Hell on that basis seems rather egotistical and childish, not something that a god would do. Such a statement deserves much more detail but this doesn't seem to be the time and place. I don't want it to come off as just me being a smartass.
I've had a number of debates on the subject of religion and enjoyed every one. One of my standard question is "Why do you go to church?". The best answer I ever got was from friend RDF who just returned from a mission trip to Haiti. "Because it makes me feel better." No pretense, no the Bible told me to, no I'm supposed to. That answer I understand.
I'll try to get off my soapbox before I really do offend someone. This just seemed to be something I needed to say. All of you out there stay well. If you know someone in a battle like mine please visit them, send them cards, whatever you can do to help them get thru the day because believe me hospital days can get very long. If they can get them to start a blog. I can't tell you how much this has helped me cope. As for me, drop me a comment. It makes my day, especially a new commenter.
Stay tuned. I can't wait to see what I write next.
Boone
I'M NOT QUITE SURE WHERE THIS IS GOING
I'm not sure what happened yesterday afternoon. I never excepted this blog to go quite so personal. I'm not an extrovert. While I have very definite opinions on lots of subjects I'm not one to go spouting them off, especially in a public forum where I know folks like my friend, fellow transplant recipient and client Mr. S read what I write. What am I thinking?
I guess what I'm thinking is I have nothing to loose. My friend could kick me off the account but for that to happen I have to be out of here and cured. That is a trade I'll jump one. Some of you, including ones I love, my take some offense or at least cringe at something I say but I'm sure the love will remain. In any case I have a feeling things may get a bit deeper around here. It's a hard battle so I may be doing a lot of screaming.
Regarding the comments from the last post please allow me a few direct responses.
Stella, you never cease to amaze me. Very high on my bucket list now is a visit to your house. We promise to call first. The song I was thinking about is "When September Ends". It is a acoustic number written and sung by Billy Joe Armstrong after his father passed. You can easily find the video on the interwebz.
Bmax I do miss our discussions. Not to many folks are up to debates anymore, particularly civil ones. Very much looking forward to the next time we meet.
TLS I had no idea that you were lurking out there. Thanks for that last batch of music. Are you working on any new stuff of your own? I'd love to hear it if you are. Thanks for being there my friend and teacher.
And Donor Girl. I'm glad you believe in yelling at God. I have done it my self. For some reason I feel compelled to let you and the others out there know that if I was a believer I would not behave any differently than I do now. And I believe it is possible that one day I open my eyes and find myself standing before God, the God you believe in. I will be very surprised but I know from quantum physics that lots of surprising things are possible not matter how improbable. If I take the Bible literally then that God will condemn me to Hell, not upon the basis of how I acted but because I didn't follow some ritual (I know I was baptized but I don't believe that one counts anymore) and didn't acknowledge him/her to be my king. Condemning me to Hell on that basis seems rather egotistical and childish, not something that a god would do. Such a statement deserves much more detail but this doesn't seem to be the time and place. I don't want it to come off as just me being a smartass.
I've had a number of debates on the subject of religion and enjoyed every one. One of my standard question is "Why do you go to church?". The best answer I ever got was from friend RDF who just returned from a mission trip to Haiti. "Because it makes me feel better." No pretense, no the Bible told me to, no I'm supposed to. That answer I understand.
I'll try to get off my soapbox before I really do offend someone. This just seemed to be something I needed to say. All of you out there stay well. If you know someone in a battle like mine please visit them, send them cards, whatever you can do to help them get thru the day because believe me hospital days can get very long. If they can get them to start a blog. I can't tell you how much this has helped me cope. As for me, drop me a comment. It makes my day, especially a new commenter.
Stay tuned. I can't wait to see what I write next.
Boone
Monday, June 17, 2013
Monday Part Two
WITH APOLOGIES TO SOME OF YOU
After the Dr. left today Nurse D hung around for a minute patting my arm and shoulder with words of encouragement while I wept. Then Pauline and I lay together for a while, holding and hoping. I was really down so it was wonderful to hold her and kiss her head. I was really not in a good place. So this evening I turned to music.
I turned to Green Day, one of my favorite bands. Brash, loud, hard driving punk inspired rock with lyrics that make you scream them at the top of your lungs. Stella they even have a song I'm sure you would like if I can figure a way to send it to you.
So I called up the files on the computer, put in the earbuds and have been stretching rubber bands as fast and hard as I can for the last half hour. Finally wore my self out and I'm feeling much better.
Now for the part mentioned in the post title.
Some of you know that I am not a religious person. All of you do now. This is not the place for a monolog on the reasons why but I do find it a fascinating subject for debate and on the rare occasion that I find someone who wishes to engage I am very respectful, assuming it is mutual. Clarify that with the fact that folks like the Westborough Baptist Church in my opinion are completely evil and I'm hoping their God feels the same way about them and gives them a great big surprise when they see him/her.
The reason the apology is pertinent because after my round of bad news, feeling sorry for my self and lying in the bed staring at the wall in the dark for a while I have come to one thought............I AM GOING TO BEAT THIS GOD DAMN DISEASE NO MATTER WHAT IT TAKES !!!!...........For those of you who may take offense let me explain what I mean by God Damn. I mean exactly that. I want God to Damn the thing in question and in this case I want it damned and shipped off to whatever singularity can keep it locked away forever without even a chance of it riding out on a chance spike of Hawking radiation. Furthermore I want it to carry with it the CMML from all of us that are dealing with it. I don't consider that to be taking any God's name in vain. I consider it a request.
I am sorry if you are still offended but that is just something I had to say. I am more than aware that I may not win this fight but I am going to fight it with everything I've got. It's all I can do. So keep praying for me and all the others, keep the good vibes coming, at the risk of offending again, ask the Great Flying Spaghetti Monster to cast his meatballs down such that they flow though my GI tract with healing power. (Come on ya gotta smile at that.).
As always, thank you for stopping by and if I make ask a favor, comments on this blog totally make my day and I could use that right about now so I you got a minute leave me one. If you ever start a blog I promise to return the favor.
Here's to a better, if hungrier tomorrow.
Boone
WITH APOLOGIES TO SOME OF YOU
After the Dr. left today Nurse D hung around for a minute patting my arm and shoulder with words of encouragement while I wept. Then Pauline and I lay together for a while, holding and hoping. I was really down so it was wonderful to hold her and kiss her head. I was really not in a good place. So this evening I turned to music.
I turned to Green Day, one of my favorite bands. Brash, loud, hard driving punk inspired rock with lyrics that make you scream them at the top of your lungs. Stella they even have a song I'm sure you would like if I can figure a way to send it to you.
So I called up the files on the computer, put in the earbuds and have been stretching rubber bands as fast and hard as I can for the last half hour. Finally wore my self out and I'm feeling much better.
Now for the part mentioned in the post title.
Some of you know that I am not a religious person. All of you do now. This is not the place for a monolog on the reasons why but I do find it a fascinating subject for debate and on the rare occasion that I find someone who wishes to engage I am very respectful, assuming it is mutual. Clarify that with the fact that folks like the Westborough Baptist Church in my opinion are completely evil and I'm hoping their God feels the same way about them and gives them a great big surprise when they see him/her.
The reason the apology is pertinent because after my round of bad news, feeling sorry for my self and lying in the bed staring at the wall in the dark for a while I have come to one thought............I AM GOING TO BEAT THIS GOD DAMN DISEASE NO MATTER WHAT IT TAKES !!!!...........For those of you who may take offense let me explain what I mean by God Damn. I mean exactly that. I want God to Damn the thing in question and in this case I want it damned and shipped off to whatever singularity can keep it locked away forever without even a chance of it riding out on a chance spike of Hawking radiation. Furthermore I want it to carry with it the CMML from all of us that are dealing with it. I don't consider that to be taking any God's name in vain. I consider it a request.
I am sorry if you are still offended but that is just something I had to say. I am more than aware that I may not win this fight but I am going to fight it with everything I've got. It's all I can do. So keep praying for me and all the others, keep the good vibes coming, at the risk of offending again, ask the Great Flying Spaghetti Monster to cast his meatballs down such that they flow though my GI tract with healing power. (Come on ya gotta smile at that.).
As always, thank you for stopping by and if I make ask a favor, comments on this blog totally make my day and I could use that right about now so I you got a minute leave me one. If you ever start a blog I promise to return the favor.
Here's to a better, if hungrier tomorrow.
Boone
Monday, June 17, 2013
A PHIL MICKELSON KIND OF DAY
Dr. B has the duty of rounds this week. He did not exactly bring tidings of great joy. The clear diet is still flowing through with none of the liquid going to the urinary tract. So guess what, back to NPO, no food or water. They are going to drop the steroids by 25% and in a couple of days I get to try food again. It feels like I'm back almost to square one. It's a real blow to me but I'm pulling it back together. Can't say I feel like walking laps. I feel more like wallowing in the bed and playing sad songs on the laptop but I may just drink the Ensure left over from breakfast in defiance. Not sure yet. Hope you all are having better days.
Boone
P.S. I gave up the Ensure. I'm giving this bastard disease any chances that I can prevent.
A PHIL MICKELSON KIND OF DAY
Dr. B has the duty of rounds this week. He did not exactly bring tidings of great joy. The clear diet is still flowing through with none of the liquid going to the urinary tract. So guess what, back to NPO, no food or water. They are going to drop the steroids by 25% and in a couple of days I get to try food again. It feels like I'm back almost to square one. It's a real blow to me but I'm pulling it back together. Can't say I feel like walking laps. I feel more like wallowing in the bed and playing sad songs on the laptop but I may just drink the Ensure left over from breakfast in defiance. Not sure yet. Hope you all are having better days.
Boone
P.S. I gave up the Ensure. I'm giving this bastard disease any chances that I can prevent.
Sunday, June 16, 2013
Sunday, June16, 2013
SO FAR SO GOOD
It's closing in on suppertime and so far the other meals have pretty much passed right on through but without causing any discomfort. Here's hoping it continues or maybe even reduces a bit. I guess I'm like Dr. S said he was the other day, "cautiously optimistic".
Energy-wise it's been a bit of a down day. I could only do two laps around the unit but did come back to do two more with Nurse M. Hope to have more good new tomorrow.
Happy Father's Day to my dad and to Pauline's. We miss them.
Boone
SO FAR SO GOOD
It's closing in on suppertime and so far the other meals have pretty much passed right on through but without causing any discomfort. Here's hoping it continues or maybe even reduces a bit. I guess I'm like Dr. S said he was the other day, "cautiously optimistic".
Energy-wise it's been a bit of a down day. I could only do two laps around the unit but did come back to do two more with Nurse M. Hope to have more good new tomorrow.
Happy Father's Day to my dad and to Pauline's. We miss them.
Boone
Saturday, June 15, 2013
Saturday, June 15, 2013
WE'LL CALL IT A GOOD DAY
Medically I'm not sure where today should fall. I did get to eat but it all passed through in short order. The goal is for retain at least something for at least a period of time. But I think Dr. S is going to let me go at least a couple of more "meals" to see how it goes. I hope so.
He let me go outside and sit this morning and that was great. I haven't been outside in 30 days and Pauline and I got to sit together in the shade for a half hour or so. Very nice.
Pauline had to leave after the outdoor sitting so walking was left up to the nurse. They were all very busy today but eventually I did get in three laps. Not much but every little bit helps.
I confess I am worried about the input/output levels which seem the primary source of concern to the Dr's but all I can do is wait until the morning and see what they think. I'll let you know.
Boone
WE'LL CALL IT A GOOD DAY
Medically I'm not sure where today should fall. I did get to eat but it all passed through in short order. The goal is for retain at least something for at least a period of time. But I think Dr. S is going to let me go at least a couple of more "meals" to see how it goes. I hope so.
He let me go outside and sit this morning and that was great. I haven't been outside in 30 days and Pauline and I got to sit together in the shade for a half hour or so. Very nice.
Pauline had to leave after the outdoor sitting so walking was left up to the nurse. They were all very busy today but eventually I did get in three laps. Not much but every little bit helps.
I confess I am worried about the input/output levels which seem the primary source of concern to the Dr's but all I can do is wait until the morning and see what they think. I'll let you know.
Boone
Friday, June 14, 2013
Friday, June 14, 2013
TOMORROW WE TRY AGAIN
Dr. S and the entourage came by this morning and the decision is to try again tomorrow with the clear liquid diet. This time with out the apple juice as that may be too much. The goal is three meals and see if some of it will stay inside. I'm pretty you can have some idea of how much I want that too happen. Until that happens there's no progress.
I managed 2.5 laps around the unit today. That is a lap progress but still feels lame because I used to do 10 with no trouble. This part of my journey though is at a longer slower pace. Exercise is the only thing that I can do to help with the healing so I'm doing what I can and I'll get that 10 laps back before too long. In bed I do some rubber band exercises and so far I have only shot myself once and show the smaller band across the room once.
Sorry there's is not much else to tell. Days are very routine here, especially without meals. I sleep, in hospital terms meaning interrupted, till around 8 or 9 and wait for the entourage to come by. For a very few minutes we talk about where we are, or are not. I finally gave in to taking a medicine for anxiety and that has helped a lot with those conversations. Typically after that is when I go for a walk around the unit. Pauline walks with me and pushes the IV pole. I'm still using a walker but plan to take over the pole soon. Everything is baby steps here.
I always hope somebody is making coffee as I pass by the machine. They have pretty lousy coffee here as I remember but it still smells so good. I miss my coffee. Sometimes I nap after the walk. Sometimes I pull over the laptop and check on the world. I hardly ever turn on the TV. Later after varies a bit, nap, blog, rubber bandacise, stare at the wall. I have a bicycle in the room but I need help getting in an out because is sits really low so I don't get to it as much as I should. Then H and R come by most every evening. A great blessing to me. If not I read or compute or just go to sleep early. It's odd but it doesn't take long to get used to the routine. Meals help put a more regular day in place but I've learned to live without it.
I want to say thank you to all of you who are following this blog and tell all of you who leave comments how much they mean to me. I check several times a day just in hope that there is a new comment. Also it truly amazes me that people from a number of countries have visited. I expected the friends in Costa Rica but some folks from Germany, Russia, the Ukraine, Vietnam and other countries have stopped by as well. Please keep checking by and if you have the urge please leave a comment. I think they help reinforce that ball of energy that I draw from all of your thoughts and prayers..
Thank you for thinking of me and please extend that energy to Jeri, Jan and Amanda and all the other families that are being forced along similar journeys.
Boone
TOMORROW WE TRY AGAIN
Dr. S and the entourage came by this morning and the decision is to try again tomorrow with the clear liquid diet. This time with out the apple juice as that may be too much. The goal is three meals and see if some of it will stay inside. I'm pretty you can have some idea of how much I want that too happen. Until that happens there's no progress.
I managed 2.5 laps around the unit today. That is a lap progress but still feels lame because I used to do 10 with no trouble. This part of my journey though is at a longer slower pace. Exercise is the only thing that I can do to help with the healing so I'm doing what I can and I'll get that 10 laps back before too long. In bed I do some rubber band exercises and so far I have only shot myself once and show the smaller band across the room once.
Sorry there's is not much else to tell. Days are very routine here, especially without meals. I sleep, in hospital terms meaning interrupted, till around 8 or 9 and wait for the entourage to come by. For a very few minutes we talk about where we are, or are not. I finally gave in to taking a medicine for anxiety and that has helped a lot with those conversations. Typically after that is when I go for a walk around the unit. Pauline walks with me and pushes the IV pole. I'm still using a walker but plan to take over the pole soon. Everything is baby steps here.
I always hope somebody is making coffee as I pass by the machine. They have pretty lousy coffee here as I remember but it still smells so good. I miss my coffee. Sometimes I nap after the walk. Sometimes I pull over the laptop and check on the world. I hardly ever turn on the TV. Later after varies a bit, nap, blog, rubber bandacise, stare at the wall. I have a bicycle in the room but I need help getting in an out because is sits really low so I don't get to it as much as I should. Then H and R come by most every evening. A great blessing to me. If not I read or compute or just go to sleep early. It's odd but it doesn't take long to get used to the routine. Meals help put a more regular day in place but I've learned to live without it.
I want to say thank you to all of you who are following this blog and tell all of you who leave comments how much they mean to me. I check several times a day just in hope that there is a new comment. Also it truly amazes me that people from a number of countries have visited. I expected the friends in Costa Rica but some folks from Germany, Russia, the Ukraine, Vietnam and other countries have stopped by as well. Please keep checking by and if you have the urge please leave a comment. I think they help reinforce that ball of energy that I draw from all of your thoughts and prayers..
Thank you for thinking of me and please extend that energy to Jeri, Jan and Amanda and all the other families that are being forced along similar journeys.
Boone
Thursday, June 13, 2013
Tuesday, June 11, 2013
Tuesday, June 12, 2013
ANOTHER STEP BACK
So the tryout of clear foods didn't go so well. I'm back on NPO for a while until they adjust some of the meds and see what happens. Really not what I wanted to hear. It's been almost a month now and things aren't getting much better. I feel OK except for being so tired. And I'm frustrated because there is nothing I can do to help the situation. I do what I am told, I exercise, I try to keep my spirits up but none of that really pushes the disease.
So they are adjusting the way I get steroids and making so other tweaks. They put me on a testosterone patch to help with the weakness and anxiety.
Yeah it seems I can't handle the stress as well as I had thought that I could. You've read some about that. I met with the psychiatrist today. We had a good talk and she is going to prescribe some anti-anxiety medicine for me. We'll see how that goes. It's certainly worth a shot. I really wish I didn't have to go there but I think I need something to get me by for a while. At least until I can get some good news. Something without a caveat. Something positive that leads to the end of this tunnel.
In the meantime I'll do what I can do which is mostly wait. Stay positive and wait for some good news. I'll stay positive and not worry as best as I possibly can but the waiting and the uncertainty are really tough opponents.
Oh yeah, one more thing. My right arm has the PIC line in it. Basically that is a long needle inserted in your arm that feeds close to your heart. At the outside end there are three places to insert IV's. That is a very good thing because otherwise all those needles would have to be in your arm directly and that is just not possible. We'll for whatever reason the right arm has become quite swollen, a lot due to the steroids. So sometime this afternoon they will remove the line and place a new one in my left arm. This will be my third PIC. They first installation was textbook perfect. The second was not so perfect but has worked fine. I'm not terribly nervous about the third but it is another chance for infection so I'm not jumping for joy. It also means the things like tray tables around the bed get reversed because now all the IV lines are on the other side of the bed. The nurses computer is wall mounted so it won't be moving. Should be interesting to see how this little dance works out.
The one sort of positive note is that Dr. S says it is still possible that I could be out in 3-4 weeks. But you can tell he knows that is probably optimistic. On the other hand it's all odds, so why not three weeks.
Boone
ANOTHER STEP BACK
So the tryout of clear foods didn't go so well. I'm back on NPO for a while until they adjust some of the meds and see what happens. Really not what I wanted to hear. It's been almost a month now and things aren't getting much better. I feel OK except for being so tired. And I'm frustrated because there is nothing I can do to help the situation. I do what I am told, I exercise, I try to keep my spirits up but none of that really pushes the disease.
So they are adjusting the way I get steroids and making so other tweaks. They put me on a testosterone patch to help with the weakness and anxiety.
Yeah it seems I can't handle the stress as well as I had thought that I could. You've read some about that. I met with the psychiatrist today. We had a good talk and she is going to prescribe some anti-anxiety medicine for me. We'll see how that goes. It's certainly worth a shot. I really wish I didn't have to go there but I think I need something to get me by for a while. At least until I can get some good news. Something without a caveat. Something positive that leads to the end of this tunnel.
In the meantime I'll do what I can do which is mostly wait. Stay positive and wait for some good news. I'll stay positive and not worry as best as I possibly can but the waiting and the uncertainty are really tough opponents.
Oh yeah, one more thing. My right arm has the PIC line in it. Basically that is a long needle inserted in your arm that feeds close to your heart. At the outside end there are three places to insert IV's. That is a very good thing because otherwise all those needles would have to be in your arm directly and that is just not possible. We'll for whatever reason the right arm has become quite swollen, a lot due to the steroids. So sometime this afternoon they will remove the line and place a new one in my left arm. This will be my third PIC. They first installation was textbook perfect. The second was not so perfect but has worked fine. I'm not terribly nervous about the third but it is another chance for infection so I'm not jumping for joy. It also means the things like tray tables around the bed get reversed because now all the IV lines are on the other side of the bed. The nurses computer is wall mounted so it won't be moving. Should be interesting to see how this little dance works out.
The one sort of positive note is that Dr. S says it is still possible that I could be out in 3-4 weeks. But you can tell he knows that is probably optimistic. On the other hand it's all odds, so why not three weeks.
Boone
Monday, June 10, 2013
Monday June 10, 2013
100 STONES DONE ONE TIME
OK, weird title I know but it fits for me. One of my favorite post-apocalyptic movies is "Blood of Hero's". It revolves around a gladiator type game where time is kept by throwing stones at a metal board. One hundred stones per period. I've just finished my first period.
It's been and interesting day. I got the bone marrow biopsy around 11 this morning after giving up about a dozen vials of blood at 4 AM. Results won't be in for a couple of days. The dietitian came in about 12 and had great news. I get to go on the clear food diet and gloriously they think the GVHD is down to Grade One. Best words I have heard in a log time. Lunch came and the beef broth, tea and jello were delicious. Soon afterward my stomach was gurgling. Just checked my ostomy bag and I was pretty much full. More output than in days. That is very much not a god thing. That output has to go down so that they can reduce the steroids that I'm getting (80mg day). The nurse practitioner says to just watch it over the never couple of meals. This was the first meal in almost three weeks so it may settle down. Oh man do I ever hope that is the case. So I'm staying upbeat about it. We'll see what the next few days tell.
On that note let me pass on the one thing of which I am certain, especially for those of you on a journey similar to mine.. Worrying does not make anything better. Often it can't be stopped but you have to try. I have cried more in front of people that I would never let me see like that that I can count. Steroids have a lot to do with it so you can't stop it but don't let it take over. This disease is a tough thing to deal with and honestly there are days when you just can't but those days pass. The best I have done in several days is that one lap around the unit, but it was a full lap. Two days ago I barely got out of my chair, but with a little help from Pauline I made it up and did a lap. It's not much but it is something.
So hang in there with me guys and we'll get thru this.
And to the lady whose boyfriend was just diagnosed, please keep in touch. That is a big reason for this little effort is to help give some idea of what you may have to go thru.
More news to come. Lets hope it stays on the upbeat side.
Boone
UPDATE..It seems I misspoke about the Grade One. I am trying a Grade One diet but the GVHD is still Stage Four. It seems that they never downgrade the level of the disease. It may be cured but then it becomes cured GVHD. Seems odd but apparently that's the convention. If they can cure it then I couldn't care less what you call it.
100 STONES DONE ONE TIME
OK, weird title I know but it fits for me. One of my favorite post-apocalyptic movies is "Blood of Hero's". It revolves around a gladiator type game where time is kept by throwing stones at a metal board. One hundred stones per period. I've just finished my first period.
It's been and interesting day. I got the bone marrow biopsy around 11 this morning after giving up about a dozen vials of blood at 4 AM. Results won't be in for a couple of days. The dietitian came in about 12 and had great news. I get to go on the clear food diet and gloriously they think the GVHD is down to Grade One. Best words I have heard in a log time. Lunch came and the beef broth, tea and jello were delicious. Soon afterward my stomach was gurgling. Just checked my ostomy bag and I was pretty much full. More output than in days. That is very much not a god thing. That output has to go down so that they can reduce the steroids that I'm getting (80mg day). The nurse practitioner says to just watch it over the never couple of meals. This was the first meal in almost three weeks so it may settle down. Oh man do I ever hope that is the case. So I'm staying upbeat about it. We'll see what the next few days tell.
On that note let me pass on the one thing of which I am certain, especially for those of you on a journey similar to mine.. Worrying does not make anything better. Often it can't be stopped but you have to try. I have cried more in front of people that I would never let me see like that that I can count. Steroids have a lot to do with it so you can't stop it but don't let it take over. This disease is a tough thing to deal with and honestly there are days when you just can't but those days pass. The best I have done in several days is that one lap around the unit, but it was a full lap. Two days ago I barely got out of my chair, but with a little help from Pauline I made it up and did a lap. It's not much but it is something.
So hang in there with me guys and we'll get thru this.
And to the lady whose boyfriend was just diagnosed, please keep in touch. That is a big reason for this little effort is to help give some idea of what you may have to go thru.
More news to come. Lets hope it stays on the upbeat side.
Boone
UPDATE..It seems I misspoke about the Grade One. I am trying a Grade One diet but the GVHD is still Stage Four. It seems that they never downgrade the level of the disease. It may be cured but then it becomes cured GVHD. Seems odd but apparently that's the convention. If they can cure it then I couldn't care less what you call it.
Sunday, June 9, 2013
Sunday June 9, 2013
DAY 100
Wow. Day 100. It seems like it should have come long ago. It is the theoretical and somewhat arbitrary time since the transplant that the patient needs 24/7 caregiving. Tomorrow I get a new bone marrow biopsy and maybe some other lab tests so they physicians can put together a sort of picture of where everything stands. So more details to come but I'll tell you what I know. At least what I think I know.
As Pauline and I understand it the Leukemia is cleared up. That is great but it's a frying pan to fire thing. Now I have the GVHD. They have done a Nuclear Medicine test on the gall bladder and while it has a lot of sludge in it that is not really uncommon in any population and they say not a concern for now. Liver tests are OK so far but they continue to watch along with all the rest of the lab tests. Lots of blood draws around here. My blood sugar fluctuates as lot and I often get insulin shots. I think that is mostly related to the steroids. My right arm became swollen last night so about 11 I got an ultrasound to look for a clot. The report came back pretty quick, no clot. Good news but I still needed something to get to sleep. The nurse thinks I need to talk to a counselor and she's probably right. To be honest I'd rather just get drugged but that is not likely the best of plans. My arm is still swollen but some other parts are too from the steroids. Those are really making me weak. Today it was all I could do to stand up from my bedside chair to try to go on a walk. Finally I was able to get up and do a 1/10 mile lap but that was it. The plan is to go for another this afternoon and I will do it but being so weak is kinda scary. I can do the rubber band exercises in bed so hopefully with a little reduction is steroids the weakness will subside.
And basically that is the game plan to fight the GVHD, reduce the intestinal output so you can reduce the steroids. The GI output is down a lot, of course never enough, so I'm hoping that they can lower the steroids soon There has been at least mention of get back on clear food next week and that's a start. After three weeks of nothing chicken broth sounds like heaven. It's not really but at popsicle and some Jello come with it.
Visitors have been regular but not intense so that have been good. It's funny but it seems the days that I want to see no one are the days it really helps.
II guess that's it for now. I want to see what tomorrow brings. Dr. S has been out of pocket for a while but is supposed to be here tomorrow and I'm looking forward to seeing him. He's a straight shooter,
Tune in tomorrow and we'll see what we have learned.
Boone
DAY 100
Wow. Day 100. It seems like it should have come long ago. It is the theoretical and somewhat arbitrary time since the transplant that the patient needs 24/7 caregiving. Tomorrow I get a new bone marrow biopsy and maybe some other lab tests so they physicians can put together a sort of picture of where everything stands. So more details to come but I'll tell you what I know. At least what I think I know.
As Pauline and I understand it the Leukemia is cleared up. That is great but it's a frying pan to fire thing. Now I have the GVHD. They have done a Nuclear Medicine test on the gall bladder and while it has a lot of sludge in it that is not really uncommon in any population and they say not a concern for now. Liver tests are OK so far but they continue to watch along with all the rest of the lab tests. Lots of blood draws around here. My blood sugar fluctuates as lot and I often get insulin shots. I think that is mostly related to the steroids. My right arm became swollen last night so about 11 I got an ultrasound to look for a clot. The report came back pretty quick, no clot. Good news but I still needed something to get to sleep. The nurse thinks I need to talk to a counselor and she's probably right. To be honest I'd rather just get drugged but that is not likely the best of plans. My arm is still swollen but some other parts are too from the steroids. Those are really making me weak. Today it was all I could do to stand up from my bedside chair to try to go on a walk. Finally I was able to get up and do a 1/10 mile lap but that was it. The plan is to go for another this afternoon and I will do it but being so weak is kinda scary. I can do the rubber band exercises in bed so hopefully with a little reduction is steroids the weakness will subside.
And basically that is the game plan to fight the GVHD, reduce the intestinal output so you can reduce the steroids. The GI output is down a lot, of course never enough, so I'm hoping that they can lower the steroids soon There has been at least mention of get back on clear food next week and that's a start. After three weeks of nothing chicken broth sounds like heaven. It's not really but at popsicle and some Jello come with it.
Visitors have been regular but not intense so that have been good. It's funny but it seems the days that I want to see no one are the days it really helps.
II guess that's it for now. I want to see what tomorrow brings. Dr. S has been out of pocket for a while but is supposed to be here tomorrow and I'm looking forward to seeing him. He's a straight shooter,
Tune in tomorrow and we'll see what we have learned.
Boone
Friday, June 7, 2013
Day 98, I guess. Pauline here.
As a caregiver occasionally you need some space, or time, or maybe just spacetime. This past few days Ann, Boone's donor was here to stay with him at the hospital to visit him allowing me to get some R&R by packing up as much as I can from the condo and moving it to the farm. I've talked to our attorney about rental agreements, with which gratefully he is going to help me.
I've fought with Verizon over my new phone and wifi service to the point I had to get my only blood relative, my nephew, to intervene for me because I was unable to keep it together. Verizon is billing me over $600 for one month. Service is terrible. They say I'm using data like crazy. No streaming, no interactive gaming. I am guilty of playing Sudoku from time to time. Over 8 gigs worth, they say. They are coming out to take a reading on the signal. Such a hassle, and this after a three month long fight with AT&T for double billing us.
I've pressure washed 14 large rugs, and been trying to blow dry them with the leaf blower, but after 3 days they are still too wet to move to the dryer (& too heavy). I've only gotten half the grass cut, and its raining. The mower is acting up and I'm having to change belts and fix broken steering pins. I've used stretch wrap to hold the bagger schute in place so it doesn't fall off, and duct taped the bag holder together so it will hold up the bags. Now if I can just figure out how to stand it up on its rear...
I'm emptying out the farm house of the "staging furniture" I bought 2 years ago, so there will be room for the condo furniture when it arrives, and to give the house a thourough cleaning. My plan was to set Boone up a man cave but he insisted he didn't want one, so I'm getting a Pauline Cave in his former wood working shop. It's big enough for the pool table a full living room set and tv and a small kitchen/ office area along side the chain saws. I won't black out the windows for me.
There's been condo TV service to cut off and the farm service to change. Otherwise, I've been cleaning out and painting the Pauline Cave, unpacking stacks of boxes, sanitizing the old refrigerator and stocking it with soft drinks.
The disability insurance should have kicked in March 1st, but they are stalling. That's really sorry. I'm sure they make sure the premiums are paid on time. Just another hassle.
On the trip back from visiting with the nice lady at Verizon, Boone called. The phone was acting up as usual, and all I heard was something is wrong with his bladder. I lost it. This was just too much I had hit my limit. I seriously considered for over a couple of hours to call Boone's brother, who works as a crisis counselor for his professional help.
Instead, I took a couple of Boone's anti anxiety pills and started screaming.
I had not been able to do a primal screen in decades, but yesterday, there was about 15 minutes of screaming as loud as I possibly could scream. The dogs were pretty sure they were not in trouble, but were crouching in the corner not knowing what crazy thing I might do next. Leukka, my only baby child, got up on the pool table, stretched her legs and paws around my neck and laid her head down on my collar bone and licked me once. She knew Mommy was in a strange place.
Fortunately long ago, while I was bottle feeding Leukka, I started piddling with a moss garden. It gave me something to do while I had to be paying so much attention to her needs, such as stopping Lyla from eating her. Over the last year, and especially while Boone's been in the hospital, I've been working on the moss garden which has evolved into a volcano which has kept me sane.
It was so good to see Boone after missing him terribly for several days. I crawled into the hospital bed with him and just laid there for several minutes. Physical contact is so rare these days, but now his white counts are good enough I feel safe enough for a tiny on the lips kiss without a mask between us.
As a caregiver occasionally you need some space, or time, or maybe just spacetime. This past few days Ann, Boone's donor was here to stay with him at the hospital to visit him allowing me to get some R&R by packing up as much as I can from the condo and moving it to the farm. I've talked to our attorney about rental agreements, with which gratefully he is going to help me.
I've fought with Verizon over my new phone and wifi service to the point I had to get my only blood relative, my nephew, to intervene for me because I was unable to keep it together. Verizon is billing me over $600 for one month. Service is terrible. They say I'm using data like crazy. No streaming, no interactive gaming. I am guilty of playing Sudoku from time to time. Over 8 gigs worth, they say. They are coming out to take a reading on the signal. Such a hassle, and this after a three month long fight with AT&T for double billing us.
I've pressure washed 14 large rugs, and been trying to blow dry them with the leaf blower, but after 3 days they are still too wet to move to the dryer (& too heavy). I've only gotten half the grass cut, and its raining. The mower is acting up and I'm having to change belts and fix broken steering pins. I've used stretch wrap to hold the bagger schute in place so it doesn't fall off, and duct taped the bag holder together so it will hold up the bags. Now if I can just figure out how to stand it up on its rear...
I'm emptying out the farm house of the "staging furniture" I bought 2 years ago, so there will be room for the condo furniture when it arrives, and to give the house a thourough cleaning. My plan was to set Boone up a man cave but he insisted he didn't want one, so I'm getting a Pauline Cave in his former wood working shop. It's big enough for the pool table a full living room set and tv and a small kitchen/ office area along side the chain saws. I won't black out the windows for me.
There's been condo TV service to cut off and the farm service to change. Otherwise, I've been cleaning out and painting the Pauline Cave, unpacking stacks of boxes, sanitizing the old refrigerator and stocking it with soft drinks.
The disability insurance should have kicked in March 1st, but they are stalling. That's really sorry. I'm sure they make sure the premiums are paid on time. Just another hassle.
On the trip back from visiting with the nice lady at Verizon, Boone called. The phone was acting up as usual, and all I heard was something is wrong with his bladder. I lost it. This was just too much I had hit my limit. I seriously considered for over a couple of hours to call Boone's brother, who works as a crisis counselor for his professional help.
Instead, I took a couple of Boone's anti anxiety pills and started screaming.
I had not been able to do a primal screen in decades, but yesterday, there was about 15 minutes of screaming as loud as I possibly could scream. The dogs were pretty sure they were not in trouble, but were crouching in the corner not knowing what crazy thing I might do next. Leukka, my only baby child, got up on the pool table, stretched her legs and paws around my neck and laid her head down on my collar bone and licked me once. She knew Mommy was in a strange place.
Fortunately long ago, while I was bottle feeding Leukka, I started piddling with a moss garden. It gave me something to do while I had to be paying so much attention to her needs, such as stopping Lyla from eating her. Over the last year, and especially while Boone's been in the hospital, I've been working on the moss garden which has evolved into a volcano which has kept me sane.
It was so good to see Boone after missing him terribly for several days. I crawled into the hospital bed with him and just laid there for several minutes. Physical contact is so rare these days, but now his white counts are good enough I feel safe enough for a tiny on the lips kiss without a mask between us.
Wednesday, June 5, 2013
Thursday June 5, 2013
DAY 96.
Today started out a bit slow because I didn't sleep well. I kept waking up to the sound of me talking. But after a late night sleeping pill I did get up early, 9 AM or so and get in a chair. Pauline brought me my computer and office chair the other day so I can begin to get up and do something besides lie in bed. I'm going to live here for a while so I may as well make the best of it.. For some reason the PT lady did not make it by today to walk but I did some other exercises and I'm feeling much better than yesterday. It's really odd to essentially feel good and know that you are really sick. I'll keep taking that as a good sign but some really positive feedback from the DR.s would sure go a long way. I'm gonna keep on keeping on but boy would it be nice to have and end in sight.
Not much else happened today. I did get a field trip to have an ultrasound so I'll find out the results of that in the morning. Hope it' good news. My 100 day mark will be next Sunday. I would have guessed that I had passed it a long time ago. It sure seems longer. That week there will be lots of lab tests and another bone marrow biopsy. I'm going to request sedation for this one. I can take the pain but I'd much rather take the drugs. It's a 70's thing.
So I guess the bottom line is more to come in the near future and lots of time on my hands. I should be trying to learn Spanish because I want to visit Costa Rico some more but don't know if I am that disciplined. I guess we'll find out.
Thanks for stopping by.
Boone
DAY 96.
Today started out a bit slow because I didn't sleep well. I kept waking up to the sound of me talking. But after a late night sleeping pill I did get up early, 9 AM or so and get in a chair. Pauline brought me my computer and office chair the other day so I can begin to get up and do something besides lie in bed. I'm going to live here for a while so I may as well make the best of it.. For some reason the PT lady did not make it by today to walk but I did some other exercises and I'm feeling much better than yesterday. It's really odd to essentially feel good and know that you are really sick. I'll keep taking that as a good sign but some really positive feedback from the DR.s would sure go a long way. I'm gonna keep on keeping on but boy would it be nice to have and end in sight.
Not much else happened today. I did get a field trip to have an ultrasound so I'll find out the results of that in the morning. Hope it' good news. My 100 day mark will be next Sunday. I would have guessed that I had passed it a long time ago. It sure seems longer. That week there will be lots of lab tests and another bone marrow biopsy. I'm going to request sedation for this one. I can take the pain but I'd much rather take the drugs. It's a 70's thing.
So I guess the bottom line is more to come in the near future and lots of time on my hands. I should be trying to learn Spanish because I want to visit Costa Rico some more but don't know if I am that disciplined. I guess we'll find out.
Thanks for stopping by.
Boone
Tuesday, June 4, 2013
June 4, 2013
DAY 90 SOMETHNG
Boone here again. Sorry I haven't written lately. As you know things have been more down than up. I've been back in the hospital a bit over two weeks now and on NPO, nothing by mouth, for that time. At first that was awful but like everything else associated with disease you get used to it. I'm planning lots of food to eat and places to eat when I do get out. Of course like always when I get out is still a question. Most of my blood numbers are good. I don't feel bad most of the time but I am very tired. Today was especially bad on that count. I honestly did not think I would be able to walk at all. I did manage one lap, 1/10 mile, but that was it. At least it was something. This is now officially the hardest thing I have ever had to deal with. The steroids make you weak just when you need all the strength you can get.. Worse for me is the emotional part. I get embarrassed and angry with myself when I can't talk without the tears. I know its from the steroids but still.............
My sister, the Donor, is down to visit and she showed me the website with all the miles logged. I am most impressed, especially by you Stella.
I will get thru this there are no options. Sometimes at night I imagine the ball of energy generated by all your thoughts and prayers. I try to see it taking over and demolishing the GVHD. So thank you all for being there. If you've got any really good recipes please send them my way because as soon as I can I am go to eat every good thing I can lay hands on,
Boone
DAY 90 SOMETHNG
Boone here again. Sorry I haven't written lately. As you know things have been more down than up. I've been back in the hospital a bit over two weeks now and on NPO, nothing by mouth, for that time. At first that was awful but like everything else associated with disease you get used to it. I'm planning lots of food to eat and places to eat when I do get out. Of course like always when I get out is still a question. Most of my blood numbers are good. I don't feel bad most of the time but I am very tired. Today was especially bad on that count. I honestly did not think I would be able to walk at all. I did manage one lap, 1/10 mile, but that was it. At least it was something. This is now officially the hardest thing I have ever had to deal with. The steroids make you weak just when you need all the strength you can get.. Worse for me is the emotional part. I get embarrassed and angry with myself when I can't talk without the tears. I know its from the steroids but still.............
My sister, the Donor, is down to visit and she showed me the website with all the miles logged. I am most impressed, especially by you Stella.
I will get thru this there are no options. Sometimes at night I imagine the ball of energy generated by all your thoughts and prayers. I try to see it taking over and demolishing the GVHD. So thank you all for being there. If you've got any really good recipes please send them my way because as soon as I can I am go to eat every good thing I can lay hands on,
Boone
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