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.
Wednesday, June 19, 2013
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
Subscribe to:
Posts (Atom)