Thursday, June 13, 2013
SHUFFLE AND REPEAT
Back to clear food.
Popsicle, broth, jello, juice and Ensure for lunch.
Lunch passes right on through.
Back on NPO.
Sigh.
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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