I'VE HAD BETTER DYS

The best thing that I say about today is that tomorrow has to be better.  I slept well last night after midnight but was still quite tired this morning.  Kathi was here and so was breakfast by the time I woke up.   J from PT arrived fairly early, which I hate and don’t hide well (the early part not the PT part, well mostly not the PT part) and after my usual whining about it we did manage to do two half laps.  Nothing earth shattering but much better than I have been doing.

Dr. B and entourage showed up about 10:00.  He’s putting me back on the TPN.  Without it and with my system just passing the food that I do eat straight through I’m back down to 114#.  I am as skinny as a rail, it’s really pathetic looking.  He is also still holding off on the photopheresis until the damage to the eye clears up.  That may be another week or so. The major news is that he is changing the steroid regimen.  He explained the details but as usual I basically understood them at the time but could explain them to you now.  It is a different steroid, apparently a newer one because the nurse was not very familiar with it.  My take-away from the visit was “what we are doing isn’t working so we are going to try this”.

It was right after Dr. B left that PT showed up.  When I turned the corner to come back toward my room I thought I saw Kathi talking with Dr. B in the hallway.  After getting back in bed I asked and yes she had gone out and talked to him.  My take away was correct.  They have four typical methods for treating GVHD and this new method is the fourth.  If it doesn’t work then, well there is no fifth.  The next couple of hours involved a lot of crying and holding each other.  The nurse came in at one point and found us lying together.  She had come to check my blood sugar but decided that it could wait. Finally Kathi had to go so she could deal with the critters at home, that I miss dearly, and other assorted duties.  I ordered a dose of pain meds.  The nurse didn’t even ask about the level of pain.  She knew it was at least 10 and why.

So while nothing is imminent the time has come to ponder the possibilities and plans for things we don’t want to ponder or plan for.  Dr. B, it seems to me, tends to be more pessimistic so we will wait to talk to Dr. S next Monday when he returns from vacation to see what he thinks.  In many ways I am still just like any of you.  I could drop dead tomorrow of a heart attack unrelated to the disease.  In some ways I am safer, i.e.  I cannot die in a car crash unless the car is flying and can make a sharp turn in midair at a high speed.  For the other side of the coin we just don’t have enough information and even then it is just for possibilities.  I could still get rid of the GVHD.  Dr. S told me about a patient he had here for more than a year who recently kick the good Dr.’s ass at some sport.

Boone

SUGAR SUGAR

Last night Nurses J and A were on duty and about midnight were taking my vitals and since I had to urinate, which I prefer to do standing, decided to check my weight.  For some reason my body decided at that moment that it was too weak to stand or do much of anything else.  Turned out it was a blood sugar issue.  We decided to weigh later and they proceeded with meds and other nursing stuff.  My back was hurting so after getting some pain meds I went to sleep about 3AM. I'm not sure how much longer they worked because I didn't wake up until the weekend Dr. woke me at about 9.  My blood sugar had gone very low and I was shaking all over.  It was a very strange sensation.  Nurses A and L worked to get my sugar level up while I lay in bed and shaking like I had bad Parkinson's.  Breakfast had arrived while I slept but I ate what I could but my hands were shaking so bad it was hard to get the food in my mouth.  Finally after a lot of meds and juices the shaking settled and eventually cleared up.  My sugar levels have been running high since then so I've had quite a bit of insulin today as well.
On the steroid front it turns out that you can't DC (discontinue) them all at once but they have lowered the dosage.  II was so out of it this morning when the Dr. came by and forgot to ask if that would continue and if so at what pace.  That answer may very well have to wait until Dr. B is back Monday.
She'll never know but I'd like to offer Cokie Roberts my condolences on the passing of her mother.  Also my condolences to all of us on the passing of J.J. Cale.  My both of them rest in peace.

Boone

THE EXPERIMENT CHANGES

Nothing much new today but what there is is significant.  Dr. B said today during rounds that he was going to lower the amount of steroids I am taking.  Nurse B said this afternoon that he had stopped them.  Stopped as in no more steroids for a while.  Now I'm sure that depends on how I react but unless I am really off base this is a big deal.  Something I definitely want to clarify tomorrow when Dr. B makes his rounds.
The next closest thing for news of the day is that I found a copy of "Spanky and Our Gangs Greatest Hits" on Amazon.  Used to have the album and lost it somewhere along the line.
Tune in tomorrow for clarification on the steroids.

Boone

UPDATE:  Nurse B just learned about the blog from Nurse E.  She just came into my room and is ecstatic to be famous on the interwebz.

ANOTHER DAY BUT NOT PARADISE

Had another first this morning. Dr. B came by to see me before their morning meeting with the nurses.  He, of course, came to see the eye.  He even came by this evening to follow up on what the Optometrist reported.  This is what they both saw.

Not very pretty but it appears to be a surface clot, not something worse.  The program is to keep a close watch on it to make sure it does not get infected or abscessed  Either would be a bad thing.  The Optometrist did say that he would be back to check on it .
They took me down for a CT scan on the eye and found nothing to indicate infection so I think we have another incident unrelated to the GVHD but another thing to keep an eye on (no pun intended).
The girl from PT came in about 10 and with her help I did manage to get in a half lap.  It was slow but fairly steady so maybe I can get back on track with the walking.  Also I should cut her some slack for what I said yesterday.  She remarked that she was glad we did the lap so she would not get "barked at".  I'm not sure exactly what that means but there is no reason for me to cause her grief for just doing her job.
After lunch I fell asleep for a while, not sure how long but I work up about 2:30 to intense pain in my lower back.  We're talking at least a 9 on their 1-10 scale. I was just short of screaming.  Of course the machine did not want to turn loose of any meds so I writhed and moaned for what seemed like eternity but was probably more like 20 minutes.  Finally the machine gave in and I got some pain medicine.  It took effect while I tried deep breathing.  Nurse G go me a hot pad and things slowly settled down.  The got me a muscle relaxer and as soon as I could I got another dose of the pain meds.  Right now the pain is down to 2 or so.  No idea why the sudden attack of pain.  I wonder if it was just a build up from all the straining when I've been trying but unable to stand up to get out of bed.  Interestingly I have been able to stand a bit easier this evening.  Not sure if that's a good or bad idea but I have to get to the edge of the bed to pee so I may as well try.  In any case I'm about another hour from asking for more pain meds.
So on the whole another interesting but not pleasant day. But I shouldn't complain to much. Nurse T is on tonight and she has a migraine headache that she has had since 3 o'clock.  I could never have some to work like that but if she had not told me that she had one I would never have been able to tell anything was wrong.  Bless her heart.

Boone

AN INTERESTING DAY

Today was make up photopheresis day for missing Monday's treatment.  That means I got platelets a couple of times in the night.  As is often the case on such nights I slept well through the first part but by the time they hang the 3 or 4 AM bag and take vitals (blood pressure, O2 count and such) I am awake.  Sometimes to awake to go back to sleep.  This was such a morning so at 4:30 I was wide awake.  I did some early exercises and fooled around on the computer.  Kathi arrived about 7.  The rest of the morning was uneventful.  Dr. B made rounds about 11.  I was asleep when he came in.  He is adjusting the drug regimen a bit, the actual change was over my head but it seemed to make sense.  You have put your trust in these guys and I have.  I'm still on a full, if bland diet.  Still no caffeine but at least I get coffee.
The light treatment was scheduled for 1:00.  The girl from PT showed up about a quarter till and wanted to walk.  When she found that for the second time she would be overridden by the photopheresis she acted a bit pissed off.  She started bitching about how I wasn't walking and seemed even more put out when I told her that I had not been able to get out of bed by myself. I got a bit short with her and suggested that she coordinate her schedule better because there was nothing that I could do about it and that I was doing all the stuff I could with the rubber bands.  After all I'm the one that wants out of here and I want it a hell of a lot more that she wants me out.  She'll be back tomorrow.  I'll let you know how that goes.
The photopheresis went off without a hitch.  I had finished lunch just before it started and that turned out to be good for me but not so much for Nurse C who was running it.  Lunch went through and into the bag really fast, filling up four times in rapid succession.  Since I was tied to the relatively short lines of the machine she had to do all the work.  But she did well and there were no problems.  After she packed up and left I had a nice nap waking up just in time for supper; tilapia, one of dietary's better dishes.  Despite my best efforts I still could not stand to use the urinal or empty ostomy bag a few times and the evening proved no better.  I believe it due in large part due to the amount of steroids I'm on.
After supper I managed to stand up and dealt with bodily fluids and climbed back in bed.  That took a lot of effort in my part and  wound up flopping back in the bed and falling asleep leaning up against one side board for about an hour.  When I woke up Hand R were coming the door to visit.
I greeted them and sat up.  I mentioned that I must have slept wrong because mu left eye felt a little funny.  H looked at it and saw that it really red and R noted that it looked like a blood vessel had broken.  H went to get Nurse T who in turn got Nurse K , who is charge nurse for the evening, and they decided to talk to the Dr. about it during his scheduled 9PM call.  I took a photo to show you fine folks and when I did I got to see just how swollen the eye had become.  It was then about 8:30.  H went to get the Nurses who in turn went back to call Dr. B.  He ordered platelets and I ordered an eye patch.  It appears to be just a burst blood vessel, no pain, no impaired vision other than the swelling.  It just looks like this.

 



 It looks a lot worse than it feels but the eye patch doesn't give me any sort of cool pirate vibe.

 



So I've had a number of nurses come by to see what Mr. Gregory is doing now and I'm sure I'll be the talk of the floor again in the morning.  At least it is not something that is a setback or maybe even related to the GVHD.  Just one more thing to get over.  Maybe I'll tell the PT girl that I can't see well enough to walk.  That might be fun..
The night did end on an high note.  Nurse A is the one with whom I have been swapping music.  Last night she went to see Brown River Return at a small club downtown. The are one of the bands that she turned me on to that I really liked. The entire band autographed a copy of their new CD which see presented to me.  Very cool.  I've already listened to the CD and it is quite good.  It's called "Up, On and Over".  Give it a listen.
So on the whole a very interesting day.  I hope yours was as well.

Boone

ALL THINGS MUST PASS

The cheese kept with Mr. Harrison's promise and after a goodly amount of pain and a long drug assisted nap has passed.  I was on clear food for a couple of meals but now I'm back to regular food.  I was a bit worried that Dr. B who has the duty this week might have a different opinion but it seems that all the Dr's and I are on the same page.  That's nice.
So basically we are back on course with the GVHD vs. steroids and testing to see if my GI tract can maintain handling regular, if bland, food.  Still so far so good.
I feel like since you went to the trouble of stopping by that I should entertain you in some way but frankly there is nothing else to tell from here.  I have a a couple of close calls or very minor leaks on the ostomy bag but those are stories that you'd really want to hear.
My platelet count last night was 27 so they gave me platelets twice to get the level up to do the photopheresis.  The platelets went down to 20.  After a bit of discussion with the Nurses Practitioner to put off the procedure until tomorrow.  So platelets again tonight, maybe a dose early of Nurse A can swing it.
Tune in tomorrow for the results.

Boone

THE CHEESE THAT BINDS

Friday after Dr. rounds the dietitian hung around to discuss upcoming meals and what I would like. She asked if I had trouble with cheese as Saturday was to be grilled cheese sandwich day.  I replied that I have never had a problem with it and liked grilled cheese sandwiches.  On Saturday the sandwich and sides arrived for supper and although the grilled chees was quite heavy it was also tasty.  I finished up about 7 and was quite satisfied.
Normally lunch and dinner still flow through my system and into the ostomy bag pretty quickly, sometimes even before I finish the meal.  This time I had only about 150 ml come out and then nothing, zero, zilch.  I made note of it.  By 9:30 I was in pain.  It felt like I had eaten a lead brick and it was parked just below my rib cage.  I was concerned because such an event could be the backsliding I been afraid of.  Nurse A gave me some medicine for the pain but it only helped a little, maybe got the pain from a 9 to a 7.  The pressure remained and I begged for more pain meds but the all powerful drug control machine refused to give them up ahead of schedule.  Schedule was an hour and a half away.  They called for an x-ray in the room and by the time the tech was finished the machine gave up the meds about 20 minutes early.  That dose was enough to let me fall asleep.  I woke up a couple of hours later with pressure still in my belly and notably reduced but by no means eliminated pain.  Still no output in the ostomy bag.  The x-ray had shown nothing unusual so it was just a matter of waiting for things to pass. 
Over the rest of the night things slowly eased up and I managed to get some sleep.  The Dr. on call came by about 9 this morning and we all agreed that this was not the complication that I had feared but just an acute encounter with a cheese sandwich. There was still no output in the bag.  That didn't happen until about two hours ago around 10.  They put me on the clear diet for a day to let my system settle down.  My stomach and I completely agreed on that course of action.  We both needed the break.
It's about noon now and I'm still feeling the effects of the night.  Things are not completely settled but they are getting close.  Got a feeling this is going to be a slow afternoon with a fair amount of napping.  Hope you're having a good day.

Boone

Dr. S SAID THE WORDS

This is a post that I'm not sure I should write.  For one thing it is early in the day, 11:10 in the morning.  I'm about to start the photopheresis treatment.  Things are going well.  My ostomy output is down.  The billyribbon count is down. Both good things.  Dr. S came for rounds and is still up beat, in part because he is headed out for a two week vacation.
Today he actually used the words "out of here".  Specifically he said he'd like to see me out of here by the time he got back.  Kathi asked if he really thought that was possible.  Response was, possible yes but highly unlikely, but at least he broached the subject.  Now before any of us, especially me, get too excited this same man two days ago used the phrase "dying in the hospital" so I am by no means out of the woods yet. Maybe just approaching a clearing.  And "out of the hospital" mostly means that the treatment becomes outpatient.  It most definitely does not mean well but I think it would go a long way toward helping me get farther down that  road.  The key to it all is that I have to get stronger and the ostomy output has to get lower.  I have redoubled my commitment to getting stronger.  It is just the rubber bands right now but I'm trying to do them several times a day.  I don't have the strength or stamina to walk lamps but I'm going to get there as soon as I possibly can.  So send me you strength and commitment vibes and prayers.  I'll do my part and we'll all hope my body starts absorbing the food.
Cautiously but optimistically yours,

Boone

ANOTHER DAY

Nothing much to report today.  A couple of close calls with the ostomy bag but both came out safe.  Had an inhalation therapy treatment that consisted of about 15 minutes of breathing through a hand held device.  I had to go to an isolation room for the treatment.  I managed, barely, to get to the room down the hall using a walker but my legs are so weak from the bumped up steroids, plus me not keeping up with exercises that I had to brought back in a wheelchair.  The treatment is for a particular type of infection that Dr. S says killed a lot of AIDS patients back in the day.  One thing that I have been lucky with is that I have not had infection issues like many patients, especially one that have been here a long time do.  Today Dr. S said that right now we need a plan, an attitude and some luck to get me out of here.  I replied that he's got the plan and I've got the attitude.  All we need is the luck.  So far the diet seems to be working so here hoping that the luck holds out on that front. 
Tomorrow is another photopheresis treatment day.  That means I get platelets at midnight and then again at 3 in the morning.  Always make for a fun night because I tend to wake up a few minutes before 12 and 3.  Don't know why but I do.  Hope you get to sleep better.

Boone

MINOR EXCITEMENT THIS MORNING

I have vowed ever since they put the "risk of fall" bracelet on me that I would not let it come true.  Well about 5 this morning I broke that vow.  I was stepping down off the scale from a weight of 132 and hung my toe on the edge of the scale.  Nurse A caught my arm but by then my knees had given and I would up on my ass in the floor.  Minor bump, major embarrassment for me.  It really pissed me off for the bracelet to win plus I was now dead weight in the floor.  No way I was getting up or really being able to help.  The nurses gathered round and once Nurse J showed up I was back in bed in short order.  Young Nurse A was all worried.  No one had ever fallen with her before.  Despite all my assurances I'm sure she cried all the way home.  A Dr. came in pronounced me fine.  Dr. S. came by on rounds later and while he had heard about the fall, like everyone else on the unit, he was not concerned.
We're staying the course on the solid food diet as long as I have no pain issues so he and I are on the same page and both cautiously optimistic about the situation.  Right now it's just wait and see.  Photopheresis went well today.  About 5 minutes shorter than last time.  Next one is Friday.
Nothing else new.  Hope you are all well.

Oh.  New music if you like country pop check out Kacey Musgraves "Same Trailer, Different Park".  Very good album.  She wrote one of the songs for the TV show Nashville.

Boone

SO FAR SO GOOD

So far so good on the food front.  Breakfast was great, no bacon though.  Lunch and dinner were also good; any food is at this point.  They have come back out fast, to the point of getting close to spilling the ostomy bag a couple of times but so far no disasters.  Just have to keep a close eye on it.  No stomach pain or indigestion so I’m hopeful.  Dr. S says well keep this up as long as there are no pain issues.  He is out for a week or two starting Friday but I’m sure he will stay in touch.  I really feel like he and I are on the same page and have kind of bonded.  Never had that with a doctor before but these is special circumstances and special doctors.

I was thinking about some of the concerts we discussed recently and thought of a couple of stories I’d like to tell you.  Call them life lessons from rock n roll shows. They are in chronological order but don’t ask me for the dates.

Lesson One:  Remain Calm, Don’t Lose Your Cool

Several of us were at an all day festival at Riverside Raceway, a drag strip in Nashville at the time.  The stage was at one end of a strip of land bordered by the raceway on one side, the interstate on the other and the parking area in the back.  There were probably 2-3 thousand people there.  Main band was Focus, they of the yodeling song “Hocus Pocus”.  There were several other bands the biggest being Blue Oyster Cult, not a great band but I like their songs and they put on a good show, in this case complete with a blanket set on fire by the crowd.  So anyway the concert started in the early afternoon, sunny day but not hot.  Music was good and all was right with the world until three soldiers from Fort Campbell started flaunting their dope smoking to some of the policemen present. 

At about that same time there was an announcements that some cars had to be moved, one of which belonged to my friend Sam.  I went back to the parking lot with Sam and upon arriving at the parking lot we found ourselves on what appeared to the set of an action movie with police cars flying into the lot and sliding to a stop.  Policemen with shot guns drawn were jumping from the cars and heading toward the crowd.  One actually paused and looked directly at me, gun raised.  I stood rock still and he turned and headed toward the raceway.  Sam, who unfortunately was not unfamiliar with local law enforcement, decided that he would move his car and self home.  I agreed that was probably the best course of action and headed back to the concert grounds but not without some degree of trepidation.

After the short walk back I scanned the crowd but didn’t see any of my friends.  There was still a big hub-bub going on in the center of the field but nothing like a riot or mob.  It appeared that the soldiers involved in the earlier incident were being arrested and carted off but something still seemed to under discussion.  Looking around I saw a girl sitting alone at the edge of the field leaning on an ice chest and watching the show so I wandered over to see what she knew.  Boy did she know.  It seems that during the confrontation over the mockery of the policemen some unknown person surreptitiously slipped the radio out of one of the policeman’s belt and made off with it.  The policeman in question did not react well.  He put out an “all call”, every available car to the scene of the crime.  Thus my brief encounter with the gun wielding officer on the imitation movie set.  I assume the arriving officers considered the missing radio a less than critical incident and things calmed down and eventually the show went on.  I inquired of the girl who had obviously been carefully monitoring events if she had any idea what happened to the radio.  She looked at me, smiled and patted the ice chest.  I returned the smile and went to find my friends.

Lesson Two:  Be Yourself, You Look Silly When You Don’t

Some of you may remember an HBO series from several years back called Def Comedy Jam.  It was produced by Russell Simmons and featured, primarily, black comedians.  Great show and I was a regular watcher.  Eventually they took the show on the road and one stop was at the Tennessee Performing Arts Center (TPAC) in Nashville.  Kathi and I got tickets for us and a couple of friends (yes black friends).  After dinner we arrived at TPAC and headed for the theater.  As I expected most of the black folks in attendance, which was the vast majority, were dressed to the nines.  Most of us white folk in regular duds.  The ushers and ticket takers were all in uniform and as always most of the ticket takers were elderly white men.  As we entered the theater I handed my ticket to the elder in charge of my line.  He turned to me and in his best Rev. Jackson voice said “Welcome, my brother”.  I managed not to laugh in front of him but just barely.

Lesson Three: Don’t Be Judgmental and Afraid of People for No Reason

A few years ago we returned to TPAC for a performance for Arlo Guthrie.  I forgot to put that one in my concert list but it was memorable for some of the other folks in attendance.  I failed to get tickets in a timely fashion for the show so we wound up on the back row.  Fortunately this is a welled planned facility so the back row is still not a bad seat.  We were a bit early and took our seats with four empty seats to my left and four to Kathi’s right.  It seems that since this was a predominantly white crowd I was no longer the brother of the ticket taker, at least I remember no such greeting.

A few minutes later a middle aged couple with two teenaged kids arrived and took their seats next to Kathi.  The show started a few minutes later.  Several songs into the set I turned to see four bikers coming in to occupy the seats to my left.  They were making no effort to be quiet and the couple to our right turned to watch them sit down and then turned to each other and muttered.  I could also see the young usher at the entrance watching as these guys took their seats.  Now I called them bikers and they were.  Long hair, black leather, tattoos but also freshly washed and the leather was clean and shiny not ragged.  There was a tag on the jacket but I don’t recall the name.  Basically they looked like guys who liked the biker image but by no means did they appear threating. One of them pulled out a bottle of Jack Daniel’s and passed it down the line.  They guy next to me offered me some which I declined because I don’t care for whiskey.  He smiled and nodded and passed it back down.  It crossed my mind to take the bottle and offer it to the gentleman to Kathi’s right just for the fun of it but the look on his face told me that might not be such a hot idea.  Indeed about that time he rose and took his family out.  I don’t know where they went but I do remember that they went the long way out of the row to avoid the “bikers”.  The most fun was when one of the guys lit a cigarette, which of course is prohibited.  The young usher came up behind him and learned over presumably to inform him that smoking was not allowed.  The offender turned and stared and the usher never actually spoke, just backed away.  I had to smile.  I don’t know where he put out the butt.  He may have been a total ass and burned the carpet.  And I’m not defended these guys actions but they weren’t a threat and both the usher and the couple appeared to me to be afraid, not offended.  The couple getting up to leave was spoiling their own night for absolutely no reason. They would have suffered no ill effects by staying for the rest of the show.  I suspect that at the bar after the show these guys would have been a lot of fun; sure as hell a lot more fun than the couple.  I know that stood and applauded loudly for the “Motorcycle Song”.  It appeared to be the only reason they came. 

Boone

 

FINGERS CROSSED

Hi, it's the wife.

Going into the hospital this morning I caught the Nurse Practitioner sitting at a work station typing away.

I asked her if these latest events are hopeful; food, no stomach pain, no cramps, and not gushing output, were all the good signs we were looking for.  She looked at me, smiled and nodded affirmatively.

When I questioned her about Boone's color, I said it looks to me like he's less yellow.  She pulled up his test numbers and said that the bilirubin levels are down, so yes, he would be not quite so yellow.

Then I asked if the GVHD was maybe calming down.  She sighed and said we don't know yet.

In Boone's room the long awaited breakfast arrived.

Never thought scrambled eggs could be so exciting.  Eggs, toast with margarine and mixed fruit jelly, Corn Flakes, and decaf.   This was a big day, everyone in the ward was talking about how Boone was getting to eat.  Even Rose and Deschel from Housekeeping came by to congratulate him on eating.

Rose wanted her pic taken with "Mr. Gregory", so here it is.

These ladies are the best.  They do a great housekeeping job, but more importantly they keep you laughing.

Dr. S and entourage came in.  He was smiling; a great big smile.  He said the same thing he always says;  gonna try this and see how it works.  He examined Boone, made him promise not to withhold pain or cramping from them.  When he turned to leave Boone's bedside, he cocked his head a bit, looked at me out of the corner of his eye and smiled really big.  I think he thinks Boone is getting better.

FOOD GLORIOUS FOOD

After I started the clear diet yesterday my ostomy output picked up to where the bag was filling up really fast, sometimes sneaking up on me to the point of danger so they switched it out to an ileostomy bag, the difference being that the latter is for use  with the small intestine whereas the ostomy bag is for connections to the large intestine.  An ileostomy bag is connected to tube leading to a larger bag so it doesn't have to me drained as often but it is more difficult for walking around.  During the change Nurse S. noted the sore area around the stoma.  I think the problem was caused by a power that is supposed to prevent such things.  I highly recommend that you avoid the stuff if they will let you.  The blue wafers are much better for preventing and clearing any infection or sore areas.  For my money nothing is the best.  The area seems to be pretty self healing.
Had my clear diet breakfast this morning then a nap and Dr. S. came in for rounds at about 10.  Nothing new on the medical front except that he started me on solid (i.e. real) food for lunch. HURRAY!!!   I didn't think that was going to start for another day or two.  As I believe I told you they are going to look for any negative reaction such as upset stomach or pain rather than just the amount and texture of the output.  So for lunch I had what seemed like a banquet of plane breast of chicken, mashed potatoes, green beans, peaches and angle food cake. Sooooooooo good.  I managed to eat about 75% of it and was stuffed. Nurse T came in and ran the photopheresis procedure.  White cell count was up so it was a bit faster, maybe 4 minutes less.
It crossed my mind to wonder if the hopefully thicker stool would have any issues with the small tube and valve used with the ileostomy bag.  The answer is yes it does. Once the thicker stool came into the small bag around the stoma it clogged the valve that drains to the larger bag below.  And of course it backed up quickly.  Since the valve wouldn't drain we had to cut the bottom of the rapidly filling bag to drain the fluid and then change it all back to the ostomy system.  I took the opportunity to take a photo of the stoma and the sore area around it to show the wound nurse tomorrow but I have a feeling she is going to want to see it in real time anyway so I guess we'll change it for the third day in a row.  A new record for me.  I'll spare you the picture.
........
Supper just arrived so I paused for turnkey and gravy with rice, dinner roll, jello and a coke.  Passed on the overgrown over cooked asparagus.  Ate most of the rest.  The portions aren't that big, I'm just not used to eating so I get full.  Most of it is coming back but so far no pain or heartburn issues so lets hope it keeps up that way.  It's certainly the best things have gone in, well, since I've been here this time.  I'm making no assumptions but it gives me some hope.  And tomorrow morning should be bacon and eggs and coffee, decaf but coffee none the less.  Can't wait.
Hope you had a good day especially my fellow travelers on this highway thru hell.

Boone

WEEKEND NEWS

Its the weekend so things are kinda slow but there is news.  Dr. S. has decided to start me back on the clear diet and probably give more solid food a shot in a couple of days if we can.  This time they are going to look more at how the food effects me as far as stomach cramping and indigestion rather that just the output of the GI system.  Sounds like a good plan to me.  Solid food would be marvelous.
More news as it comes in but that's it for now.  Remember, Sunday is a day of rest so please join me in being lazy tomorrow.

Boone

READER REQUEST

OK so Donor Girl, after the last post, asked about concerts I’ve been too.  We talked about this a bit during her visit last week.  So my list is below.  I have most of the tickets framed in a collage at home but you can’t see the dates on them.  I’ll take a shot at it when I can but my dates may be way off.  Kathi can correct me late if need be.  Other details may need to be corrected as well for, shall we say, environmental reasons.

This post really begs to be interactive so please give us your list in the comment section.  And I know I’m probably getting on some of your nerves with this plea, but we would love to hear a response from someone overseas.  Thanks.  Oh yeah, its 3AM and I am alone (not lonely) but I’ll post another report after my photopheresis tomorrow.  Platelets are a 17 right now so I’m getting blood and platelets tonight to try and get up to at least 25.

FIRST CONCERT

THREE DOG NIGHT, Nashville, Municipal Auditorium, 1970          

              Was in love with the band at the time.  Still love them but have long since discovered better versions of some of their songs.  Went with my best friend, no dates.  Burned incense in the car on the way home.  Wore a purple shirt with puffy sleeves and frilly cuffs.  We we’re really cool, LOL.

BEST SHOWS

PINK FLOYD, Dark Side of the Moon, Atlanta, Braves Stadium, 1973

           Dark Side of the Moon straight through in quadrophonic sound, center seats, the rocket that crashed on stage went right over our heads. What more can I say.

ALICE COOPER, multiple times in the ‘70’s.  Mostly in Knoxville.

Welcome To My Nightmare Tour was probably the best show.  Killer would have been except that it was an all-day festival one summer and the sun was still for the performance.

LEON RUSSELL, Middle Tennessee State University, 1975?

           Opened with a gospel group in all white and a white grand piano on stage.  During their second or third number Russell walked out on top of the grand piano also in all white top hat and tails playing a white Stratocaster. The tour was recorded live and that album was on my list of best album with good reason.

THE WHO, Middle Tennessee State University, 1976?

            Not the early Who with Keith Moon but still The Who.

DAVID BOWIE, Ziggy Stardust Tour, Nashville, War Memorial Auditorium, 1972

            The auditorium seats about 3000 people and we were towards the front near the center.  Opened with a giant strobe light that from our angle perfectly framed the drummers head.  Fantastic show.  I vividly remember Bowie climbing the speaker stack because I kept expecting him to fall.

 

PROCOL HARUM with THE EAGLES as the front band,

 Nashville, War Memorial Auditorium, 1972

Again the small venue made for a great show.  It was just after The Eagles came out with their first album.  They played the entire album. By the time they got to the third encore they had run out of original material so they played “Oh Carol”.  Then you put a Procol Harum show on top of that and you have a hell of an evening for, I believe, a ticket price of $6.  May have been eight.

GREEN DAY, American Idiot Tour, Nashville, Bridgestone Arena, 2005

            Great album. Great show.  It wasn’t a sell out so we got moved down to mezzanine level.  They pulled a kid out of the audience to play Billy Joe’s guitar part on one song and the kid made Nashville proud, didn’t show off just followed Trey Cool and nailed it.  I’m sure they did the same bit in other cities but I wonder how many places it worked that well, After all this is Nashville, you are required by law to at least own a guitar and have it in your home.

PRINCE, Musically Tour, Nashville, Bridgestone Arena, 2005

            Just a plain great show.  If you ever have a chance to see him please go.

 

WEIRDEST SHOW

 

HAWKWIND, Nashville, Mothers Music Emporium, 1970

            You likely don’t know the band.  Space rock kind of guys.  The band name and date were hand written on the ticket.  Very small venue.  No tables or chairs.Lead singer and saxophone player wore a full lizard head mask for almost the entire night.

           

THE REST

BAREFOOT JERRY, Nashville, Exit Inn, 1970

            At the Exit Inn back when it was a quite small listening room.  Group of local studio musicians got together and did four albums.  Some great stuff there.

PRINCE, Las Vegas, Studio 54,

           Would be a best show but our place we stood had sight line issues at times.  On the other hand he kept coming back to the sound board which was very close to us so he passed close by a number of times.

Its 5 am now.  I think I’ll finish this in the later am.

ELTON JOHN….. three times

ZZ TOP…..Great show in Knoxville

BACHMAN TURNER OVERDRIVE…..Knoxville

KISS…..Nashville, Municipal Auditorium

 Loudest concert I’ve been to

RANDY NEWMAN / MAC MACANALLY…..Knoxville

JIMMY BUFFETT…..Knoxville with his one man “all Puerto Rican band” back-up for $6, 1973.  Nashville years later

 

ROD STEWART…..Nashville Municipal Auditorium

STING…..Nashville, Starwood Amphitheatre

STEVIE RAY VAUGHN…..Nashville, Starwood Amphitheatre

JOE COCKER…..Nashville, Starwood Amphitheatre

JIMMY HALL…Nashville, Exit Inn (enlarged with pews), New Years Eve 2001.

                         Sat next to his sister.

GREG ALMAN…..Knoxville

ROLLING STONES…..Vanderbilt Stadium

PINK FLOYD…..Division Bell Tour, Vanderbilt Stadium

BIG AND RICH / BROOKS AND DUNN, Nashville, Bridgestone Arena

            Big and rich was the front band and excellent.

            Brooks and Dunn sucked.  Keith Brooks counted down the last 10 seconds of the   year on stage by himself like he was bored to tears and walked off stage. That was the entire celebration.

EDGAR WINTER…..Vanderbilt Memorial Gym

JOAN BAEZ…..Vanderbilt Memorial Gym

JOHN PRINE…..Vanderbilt Auditorium

BONNIE RAITT…..Vanderbilt Auditorium

THE CLASH…..Vanderbilt Memorial Gym

ROBERT PALMER…..Vanderbilt Memorial Gym

MARSHALL CHAPMAN.....Vanderbilt Auditorium

NITTY GRITTY DIRT BAND…..Nashville and Knoxville

THE FIFTH DIMENSION……Nashville Municipal Auditorium

YES….. Nashville Municipal Auditorium

SLADE…..Knoxville. Did all the songs first that Motley Crew did later.

STEPHENWOLF….. Nashville Municipal Auditorium. 1971.  The police cut the power at 10 o’clock curfew and almost caused a riot.  Made for “Born To Be Wild” to be a great finale

MULTIPLE FESTIVALS

            Dr. Hook and the Medicine Show

            Focus

            Blue Oyster Cult

            Los Straight Jackets

Many others but the names are on the framed tickets and I don’t have access to   them.  At the all-day affair at Riverside Raceway in Nashville they played Dark Side of the Moon at full volume in the evening and the album got a standing ovation.

I’m sure I’ve forgotten a few but my memory is now close to what it used to be.  Perhaps your list will remind me of them and I’ll post them in the comment section.

Your turn.

 

Boone

 

A CHANGE OF PACE, HOPE YOU DON'T MIND

This post is different.  I’m writing it in advance for a slow day or a day where I just don’t feel like writing.  Today is more the former.  Medical wise we are in a standoff between the GVHD and the steroids. We're hoping the GVHD blinks first but so far it's standing it's ground.  We'll see.  I'm quite good at stare downs. I've never lost to a dog yet and Crater was hard to beat.

Kathi has mentioned that I am a major music lover and audiophile.  I love rock n roll and like at least some music in every genera except opera.  I appreciate the art of opera and hard core punk and rap but just can’t get into it. My collection of music contains everything from The Beatles to Jay-Z to Wagner to Doc Watson to Sigor Ros to Body Count to the soundtrack to Mary Poppins.  Fairly eclectic don’t you think?

Some of the nurses here have been talking music and I’ve been turned on to some new stuff my favorites being Bronze River Return, Cold War Kids, Edward Sharpe, and Macklemore & Ryan Lewis and Amos Lee.  When I visit someone in their home I always seek out their music and book collection to see what they have.  While I confess to sometimes judging them by what I see my intent is to find out what we have in common and if there are things in common what do they have that I don’t know of so I can discover new artists and authors.  I find it makes for great conversation especially if they are a major music or literature fan.  Same goes for movies as well but I’ll confine this one to music.

For some reason I have the urge to point out and in part defend the fact that I have some music that many of you would find offensive and some songs that I have some difficulty with.  Most prominent of those would be “Cop Killer” by Ice T’s heavy metal band Body Count.  First of I was amazed when rapper Ice T started a heavy, very heavy, band.  Secondly practically every character he’s played as an actor has been a cop.  I do like the song in question.  It is great for exercise and it suffers in public perception for the same reason that does Pink Floyd’s “We Don’t Need No Education”, there is an introductory portion that is never played with the song.  In this case the introduction discusses the cops in question and, agree or not, it does make a case.  I still don’t agree with killing any cop, or anybody else but I also like Wagner and I’m not a Nazi.

The other song that comes to mind is Jay-Z’s “99 Problems”; “I got 99 problems but a bitch ain’t one”’ I know much of hip-hop and rap is misogynistic but I always wonder what Beyoncé thinks about that song.

With that as a background I’d like to give you my list of top albums.  The list started out to be the top 20 but wound up being 44.  They are in an order of sorts but that order should be considered somewhat fluid.  I find it difficult to compare bands/albums because they can be so diverse..   For instance 1 and 2 are Pink Floyd’s “Dark Side of the Moon” and 2 is The Beatles “Abby Road”.  I can’t really put one above the other.  Both are nearly perfect IMHO.  Also the perfect album, or just about anything you consider, depends on your mood at the time. So without further ado………………..

DARK SIDE OF THE MOON ………Pink Floyd

            Best served over headphones with the cocktail of your choice.

ABBY ROAD……….The Beatles

            By law, mine, side two must be listened to as one.  It cannot be split up.

WHO’S NEXT……….The Who

            Best straight up rock band and album ever.  When I had it on (eight track) in the car my Dad claimed that he could hear me coming from a quarter mile away.  That’s probably not an exaggeration.

TARKIO ROAD……….Brewer and Shipley

            You probably know “One Toke Over The Line”.  The rest of the album is much better.

RUBBER SOUL……….The Beatles

            Get collection of songs you know just not where you know them from.

THE WHITE ALBUM……….The Beatles

            It’s the White Album for god’s sake.  You should have a copy.

AMERICAN IDIOT / 21^ST CENTURY BREAKDOWN……….Green Day

            I list them together because they are similar albums and both instant classics.  Love, love, love them both.

FLAG……….James Taylor

            No longer sweet baby James.  Mature songs.  Please give it a listen.

IT’S A BEAUTIFUL DAY……….It’s A Beautiful Day

            It’s a beautiful album.  (Sorry.  Couldn’t resist.)

APOSTOPHE……….Frank Zappa

            An excellent album to begin your Zappa collection with and everyone should have a Zappa collection

KILLER / SCHOOLS OUT……….Alice Cooper

            Classic Alice.  The west side story section if marvelously done.

THE RISE AND FALL OF ZIGGY STARDUST AND THE SPIDERS FROM MARS……….David Bowie

            Again this album should be in your collection if your are any sort of rock n roll fan.

EXILE ON MAINSTREAM……….Matchbox 20

            Uncommonly good collection of pop songs.

QUEEN II……….Queen

            Another law of music, mine.  The opening sequence of the album must be played at the maximum volume that you and your equipment can tolerate.  In my case ear spliiting.

MAC MACANALLY……….Mac MacAnally

            He plays with Jimmy Buffet now. Check out some of his stuff, escpcially the early albums.

MACHINE HEAD……….Deep Purple

            Classic.  Just plain classic.

LAYLA AND OTHER ASSORTED LOVE SONGS……….Derek and the Dominos

            Great album.  Should be in your collection just for “Bell Bottom Blues”.  “Layla” is a bonus.

LOVE OVER GOLD……….Dire Straits

            Worth if “Telegraph Road” alone.

ELDORADO……….The Electric Light Orchestra

            Marvelous orchestral opening into a excellent sequence of songs.

TUMBLEWEED CONNECTION………..Elton John

            Fabulous start to a fabulous career, inspired by Leon Russel.

CLOSER TO HOME……….Grand Funk Railroad

            My personal favorite bu pretty much any GFR album would fit well on the list.

ROCKIN’ THE FILMORE……….Humble Pie

            Excellent live performance of great songs and jamming.

THICK AS A BRICK……….Jethro Tull

            With an honorable mention to HEAVY HORSES a very much unappreciated album.

ROCK ‘N ROLL JESUS……….Kid Rock

Proves the kid can write great songs.

LED ZEPPELIN……….Led Zeppelin IV

My favorite from one of the best bands of all time.

LEON LIVE……….Leon Russell

            Best live album of all time period.

LOGGINS & MESSINA……….Loggins & Messina

            Music with a message delivered in a most pleasant package.

WISH YOU WERE HERE……….Pink Floyd

            Gilmore takes over and the music soars.

MUSICOLOGY……….Prince

            Got it free at the concert.  Never miss an opportunity to see him live.

GRAFFITI BRIDGE……….Prince

            Could be DIAMONDS AND PEARLS. Both great albums from a master craftsman.

EPIC FOREST / SOMEBODY’S WATCHING……….Rare Bird

            You probably don’t know them.  You should.

BRIDGE OVER TROUBLED Water……….Simon and Garfunkel

            This one can still make me tear up.

GRACELAND……….Paul Simon

            Another instant classic.  Check out Ladysmith Black Mambazo’s other albums as well. MASTER HITS……….The Fifth Dimension

MASTER HITS……….The Fifth Dimension

 

LIVE……….Steppenwolf

            One of my favorite bands of all time. I picked “Live” just because it was the first one I had.  If you are a rock n roll fan you should at least try a greatest hits album.  You know most of the songs already. My favorites are the things less played on the radio.  If you like the band then try some of John Kay’s solo work.  It leans more toward a country sound but there are some great songs, especially on his last solo endeavor.

COUNTDOWN TO ECSTACY……….Steely Dan

            For me the best of another great band.

SONGS IN THE KEY OF LIFE………..Stevie Wonder

            What can you say.  It’s on everybody’s list of greatest album and with good reason.  You know all the songs.

CRIME OF THE CENTURY……….Supertramp

            You know many of the songs but might not remember who did them.

THE ALLMAN BROTHERS BAND……….The Allman Brothers Band

            Southern rock’s best at their best.

THE CRANE WIFE……….The Decemberists

            Another band you may not have heard of.  Eclectic group.  Check them out.

PICKIN’ ON NASHVILLE……….The Kentucky Headhunters

            A toe tapping good time.  Got my copy from a guy that worked on the album or I wouldn’t even know about it.  Just another good reason to live in Nashville.

TRES HOMBRES……….ZZ Top

            Great album worth inclusion here if only for the slide transition into “Jesus Done Left Chicago”

HYMNS TO THE SILENCE……….Van Morrison

            Two discs of fantastic music from the fantastic voice full of soul and feeling.

THE LAST WALTZ……….The Band.  The last tour.  What else need be said.  Could be considered a greatest hits album but just doesn’t have that feel about it to me.

OK the rest are greatest hits collections so I can’t in good conscious call them a greatest album but you should still check them out.

GREATEST HITS……….Sly and the Family Stone

GLORY ROAD……….Neil Diamond

MASTER HITS……….The Fifth Dimension

 

So that’s my list.  If I did it again in a month or year I’m sure there would be differences.  I’d love to hear what your favorites are.  I love music and always love learning about new bands or old bands that I missed so please let me know some of your favorites. I’d especially like to hear from some of you overseas as I know you are exposed to bands that are not common in the states.

 

Boone