Day T+ 28 and counting....

I had feared this day.  The biopsy report would be due, Boone's numbers have been steadily going down.  Dr. S looked like he was very worried last time he was in.

The news is, Boone is, repeat is, engrafting.  He's just out on the far side of the Bell Curve for his timing.  His marrow shows that the stem cells have begun to take up housekeeping.  They are just being very slow.   My guess is Boone's age plus his reacting to every drug they use, and having a severe (in my mind) reaction to the last bag of whole blood.  Doc said that's what caused the injury and damage to his lungs.  I guess that was the last trip to the ICU, where they had to jump start him.

He is better in that he does know what's going on 95% of the time.  He's very tired.  He needs help to eat just because it wears him out so.  This morning no breakfast, but I got him to drink apple juice and eat a 4oz. cup of peaches.  Now he's sick at his stomach and getting meds to help with that.

He promised he would do everything he was asked to do, including eating and exercising.  Today he did make it down the hall and back with the lovely Jeanna, his PT assistant, with a walker and of course the IV and O2 tagging along.

Lunch was difficult.  But at least there was ice cream.  He ate every bit of it.

So as far as engraftment goes, Dr. S is "encouraged".  I could tell he was happier about Boone since he read the biopsy report.  So far, no real infections, still taking antibiotics by IV.  His neutrophil count was 0.1; white ct 0.5.  

He is trying to sleep now.  Maybe things are starting to look up.

Day T + 25 and counting.

Well it's been a while since the last post.

Friday night Boone's lungs were filling up with fluid.  Even with the O2 running he was not getting enough oxygen to sustain himself.  Fortunately a nurse was in the room with him when he began the normal and natural panic attack associated with not being able to breathe.

She and others I suppose took Boone in his own bed and literally ran to the ICU.   Pretty much as soon as they got there, he coded.  Fortunately, the ICU doc was standing right there.  He said they had to do CPR for 2-3 minutes to get him back.  Then he was hooked up to an intubation machine to put oxygen in and suck the fluid out.  Three large hoses going down his throat.

I got the phone call telling me I should get down to the hospital ASAP.   By the time I arrived Boone's brother was already at the ICU.  One nurse commented that he had more machinery in his room than she had ever seen.  There was one nurse, he said sang to him to help calm him down.  Apparently, telling him he's ok and everything is fine now, made him really mad.   He asked me to sing "Soft Kitty" to him.  I can't carry a tune in a bucket, so I spared everyone that misery.

Day 2 of the ICU, his kind and wonderful nurse called me early that morning to tell me he was fine and she thought it would be good if  the family could take a day off.  Bless her heart, she told Boone she told us to stay away.  That he needed to rest.  Frankly, so did I.  On day 3 of the ICU, he asked the nurse to call to see what time I'd be there.

At least during this visit to the ICU he was more lucid.  He had been off the opiates for 7-8 days, but his pupils were still constricted.  They didn't have to restrain him as much as the last trip.  He tried to pull out the intubation equipment, but once the nurse got in his face and made him understand he couldn't do that, he settled down a bit with the help of some Valium.

He's back in the BMT ward now.  Not getting up like he should, not eating like he should, not doing his mouth rinses, or his lung exercises.  So I force him to when I'm here, and he stays fairly pissed off at me.  Frustrating to say the least, but I know he's not himself.  He's so very tired, he just begs to be allowed to sleep.

The doc came by this morning.  Said that the numbers we are seeing are not necessarily engraftment. They are going to run some tests this afternoon to see what's going on in his blood.  It's time, maybe a bit over due.

Boone is sort of resting now.  Lots of grunting and mumbling.

NEWS FLASH!!!

BOONE'S NEUTROPHILS ARE 0.2!!!!!

ENGRAFTMENT!!!!

Day T+ 21 and counting.

Doc just came by.  Neutrophils are great, but doesn't mean engraftment just yet.  We want to see the numbers steadily increase.  He said there may be days that it dips, but not to worry if the overall number is climbing.

The bed is keeping boone warm enough now that he is sleeping better.   He appears more relaxed.

Stella, from the LBD you will remember "sun downing".  That's where Boone is now.  So there is some bit of confusion left, but only right at the early evening hours.   Doc says its not too bad.  It's getting better.

The PT and I walked Boone around the short lap of the ward today.  Only once, but that is about 4-5 x  further than yesterday.

Boone is depressed.  It seems like he is feeling defeated, even though he has made it through the worst part.  He showed no emotion over having neutrophils.   His hemoglobin is down, so he will get whole blood today.  Should make him feel better by tomorrow.

I'll post a photo when I get home....for some reason it's hard to do from the iPad.

Jeri,

Just saw your comment about the DRE.  I've responded on that post date.

Until further notice, Pauline here.  Day +20.5 and counting

This is a P.S. to the earlier post.  It's also mostly for those of you who know him all too well...

He's still a smart ass.

Pauline here, again.  Day T+ 20 and counting...

This morning was a pretty wild ride.  I arrived at the hospital about 8:30 am.  It's now after 11:00 and I'm still breathing hard.

Boone has been cold, bone shivering cold.  This was going on yesterday, so this morning I brought him an electric blanket to put between him and the inflatable mattress.  Air mattresses are just like waterbeds, they will suck the heat right out of you, just slower.

When Nurse Goodbody came in, I told her I wanted to put down the electric blanket, then put a satin sheet over it, and get him back into his satin pjs.  He is so sore that scooting him around in the bed has rubbed him raw.  The satin pjs and sheet fix that problem.  We learned this when we were caring for my dad.  He was a big man and moving him was difficult, but with the satin we could practically spin him around.

Anyway, Boone was complaining of being very cold.  His blankets and sheets were wadded up so I proceeded to pull them up to straighten recover and tuck him in.  When I pulled them up I found his osteomy bag had leaked.   He was wearing his brand new super fluffy wonderfully warm housecoat, it was soaked in pure liquid feces.  No wonder he was cold, laying on an air mattress in wet clothes.  At least the smell has diminished.  I guess a liquid IV diet doesn't stink on exiting.

Nurse Goodbody and I rolled him around and washed every part there was to wash, but unfortunately, I didn't think about washing his hands until after he stuck his finger in his nose; it had feces on it too.  So we scrubbed the hands, and the nose.  I changed his bag, because I've done it more than the nurse, but honestly, it's been a while.  Just as soon as we got him clean, he spurted all over himself  again.  And again. And again.  Finally I got the ostomy bag put on before another eruption.  Not a second too soon....

So Nurse Goodbody and I got him stripped, recleaned, dressed in his satin jammies and I put down the electric blanket and satin sheet.  He slid right into the bed.  After the electric blanket started warming up, he would start to drift off to sleep, then we need blood, we need to... We need to...it never ends.

No rest for the weary.

The Dr. and his entourage came by.  Doc was ok with the electric blanket and satin sheets. (He had already heard about them)  Not too happy about the feces in the nose, but all in all, Boone is much better, he's just very tired.   His WBC is up to 0.3 shooting for 0.5.  No sign of any neutrophils yet.  But the doc seemed confidant they were coming soon.  Vitals are good.

Just as soon as Boone got to sleep, the PT came by.  We got him up and with a walker, got him to walk the length of the short hall; about 80 feet including the room, and back.  He did really well.

Boone is back in bed and now finally sleeping comfortably.   

No more shivering.

Hi Pauline here..  T + 19 and counting.

Boone is still very groggy and sleepy.  I don't see any more signs of him being delusional, except it appears he pulled out one of his IVs.  But it could have just been from rolling around, I guess.

He ate a little bowl of peaches for me this morning.  Coffee; that he used to love and would gross out over it if there was more than 1/2 t sugar per cup, insisted on 4 sugars, and it was still not something he could choke down.  I tried the chocolate Ensure.  He had no problem with it before, but now it's too nasty tasting for him.  Three swallows was all he would do.

They have started to feed him by IV.  At least that way we know he's getting some nourishment.

He is pretty down in the dumps emotionally.   He doesn't really seem to understand why he is having so much trouble.   They have ordered PT to come get him up and about.  His white board says they want 10 heel slides, 10 snow angels, and 20 ankle pumps.  This in addition to walking 10 laps around the ward.  Not gonna happen today...  Maybe tomorrow...

Vitals still good.  WBC holding at 0.2.  No neutrophils as of yet...maybe tomorrow...

Hi Pauline here.  T+16 and counting.

I apologize for not blogging the last several days.  I was confused about my ability to get into the blog editor without Boone's computer.  Yes, I have his computer but it requires a fingerprint swipe to get in.  I must say, the cut off his finger idea did cross my mind.  I decided it was probably not a good idea.

Anyway, several days ago Boone was moved from the transplant unit to the ICU here in the same medical complex.  The nursing quality here is absolutely top notch.  In the ICU each nurse has two patients to take care of.  These are seriously hard working caring nurses.  I cannot say enough good things about them.  With that said, Boone got to be so much trouble for them they were not able to properly care for the other patient in their charge.

They called Boone's brother, after trying to get me twice, to ask if the family could be there as much as possible to help.  I started going in around 4 AM, and leaving about 2 PM.  Boone's brother would come in at 7 PM and stay until 1-2 in the morning.  Several people have commented to me that the hospital should have called in more staff.  I'm not sure that's fair.  Boone was so much to handle.  When he was barely lucid there was all the stuff he needed: help peeing, water, some food, bathing, sheet changing, it just went on and on.  The nursing staff did not expect me to bathe or change sheets, but since I know how to change the bed sheets with someone in the bed, and how to lift them, I saw no need in getting another nurse in when I could help.

The rest of the time, when Boone was not lucid, he was a screaming maniac.  At one point it took me and two nurses to hold him down so they could put restraints on him.  He was ready to go.  I'm not sure where, but he was going come Hell or high water.  Obviously in the ICU the patient is hooked up to every machine that came beep, whir, or blink.  Boone spent his time pulling out every cord, taking off his oxygen, twisting and turning and tangling.  That was the constant problem, just fighting him to not do himself harm.  They really did need the help.  There was never a dull moment.

Boone was constantly talking to someone.  Working on various hospitals, getting on airplanes, and a few good moments in Costa Rica visiting our friends there.  All the while he's pulling and tugging and trying to escape.  They started out by putting the boxing gloves on him to stop him pulling on his IV lines and oxygen hose.

Transplant day +16 continued.  (Blogger issue.)


He then got so agrevated about his hands he started trying to swing at stuff.  That was ok as long as someone was there to wrestle with him, but once he was without me or his brother, they had to tie down his arms and legs to keep him under control.  He fought the restraints constantly.  He was furious.  He told me he would kill me if he could get those scissors on the drawer or a knife.  He begged me to take off the restraints.  

On the occasion that he was unrestrained for whatever reason, I had to be careful to stay on the defense.  He bit me, bit me really hard, punched me in the stomach (without the gloves), kicked me.  

I asked a girlfriend of mine to fill in the afternoon hours between my shift and Boone's brother's shift.  Boone told her he was going to spit this disease on her then she would die too.

All the while, the doctors are trying to figure out which med or mix of meds is causing this problem.  I told them he hallucinated at the hospital after his surgery when they gave him morphine.  They took him off morphine and tried other meds.  It kept happening.  What I finally recalled was Boone getting sick after being given codeine back in our college days.  It appears that he reacts badly to all opium based drugs.  After I talk to the docs tomorrow, I hope they will put him back on the Marinol rather than any of these other heavy duty drugs.  When they were giving him that before giving him morphine he was happy, hungry, and sleepy.  What more could we want?

Now he his back in his room at the transplant unit, so during my day off he must have gotten much better since they pulled all the pain meds.  That was Saturday.  I was going in today, but ended up sleeping until about 1:30 PM.  since he hasn't picked up the bedside phone and called, I figure he is still sleeping all those drugs off.

I needed an extra day of rest too.  It was a wild ride, now it's time to see some engraftment.  

Pauline here.  Transplant day + 10

Boone is still receiving the chemo to suppress his immune system.  He is very tired and gets sick from time to time.  The amount of drugs they are pumping into him is amazing.  Pills for everything, plus the chemo, and again today more platelets, more antibiotics.

This morning, he was running a fever.  The forehead scan said 100.5 but the oral thermometer said it was over 101.  He has some fluid build up in his lower left lung.  Nurse Goodbody said she would get with the doctors, and would start him on even more meds to make sure they nip this issue in the bud.
If we were home, I'd be brining him to the ER right now.  I get chest pains just thinking about it.

As you probably guessed, Boone hasn't written anything because he is just too tired to sit at the computer to do it.  According the nurse, Boone gets up and about a little better when I'm not here.  Sure, he has to fend for himself more.  I'm not here to fetch ice, or a spoon, or the vomit bucket.

This morning, he set off the oxygen alarm; his oxygen level was dipping below 90, so he now has the O2 line in his nose. 

Our visits have become more where I lay down in his bed beside him while he sleeps and hallucinates.  Actually, these are good visits, I get to touch him; always with mask on and breathing in the opposite direction, of course.  The rest of the time I fiddle with the computer and watch him sleep.

His sleep is giving him no rest however, because he is always talking, or trying to do something with his hands.  This morning he called Tweak to come to him; said she was a good girl, then proceeded to stroke and pet me. 

Sometimes it's good to be the dog.

Pauline here.   T+ 9 and counting.

I think the hardest thing I've ever had to do is see Boone like this.  Honestly, if I walked past him out in public, I'd not think twice that it could be him.  There is no hair left on his head or face other than a bit of stubble here and there.  I haven't  seen him without face hair since he was 18; then his hair was beautiful long straight silky black hair.  It was several inches below his shoulders.

He is still receiving chemo to suppress his immune system so he doesn't try to murder the donor cells. Right now he is asleep but talking out loud, reaching for things in the air; I think he's petting Leukka.

For his coworkers, he is constantly talking about work in his sleep.  "Yes you need to draw this", "no the engineer was supposed to do that", "Mike! Come here!!!.. With fingers doing the come hither moves.  Then he will break out laughing, then suddenly stop.   Now he's getting on a plane back to Nashville.  I wonder what hospital he is working on....

There's nothing much for me to do right now other than show up at the hospital.  Yesterday I didn't even do that.  I absolutely had to have a break. When I talked to Boone about it on the phone, I felt so guilty for "leaving" him here alone.  I still feel guilty about it.  I feel like I abandoned him in his time of need.

Mostly he sleeps and talks.  In reading other CMML patients blogs or the Cancer.org stuff, people talk about being too weak to talk on the phone.  That's where Boone is now.  I've had him fall asleep in mid sentence.  He's getting platelets today, he got 2 units of whole blood Friday.  He is at his lowest point blood count wise, but is as best I can tell, right on schedule.  It's bad, but its good.  No infections so far.
As for me, I've moved the critters to the farm for the duration of the hospital stay.  Lyla (AKA "Crazy Dog"), gets out and runs at full tilt boogy, rather than hiding in a dark corner shaking all day.  Tweak, our eldest, loves to lay out in the sun.  Leukka is learning to catch moles.   All good girls.  Boone misses them a lot.  They seem to understand that something is wrong too.
I've had to find busy work to do, just to divert my brain from all of this.  I'm not one to want to talk to counselors, because I think girlfriends are better.  They let me talk about what I want to talk about, not about some crap that happened when I was 5.
In the last month or so, I've managed to clear out the dead trees with honeysuckle all over them that lined our front yard.  Now you can see clear through the woods to the top of the hill.  I still have to finish clearing out what has been cut, and hopefully I can get that done before the ticks come out.
But my number one distraction is the moss garden I started last year when I was bottle feeding Leukka.   I'm putting in roads, complete with streetlights, a volcano, waterfalls, a river with an island, a lake, and will Bonsai a seedling Japanese Maple that sprouted last spring.
Hummmm....now he's speaking Spanish.
I'm spending way too much time on my moss garden, but it gives me a miniature world I can control. I've always been one to need to know what's going on, why its happening, and plotting what I have to do to get a job done or divert catastrophe.  With this disease, we are just passengers on a bus that is taking us to some unknown destination, and no ETA.

I'm so very tired.

March 8, 2013

DAY 7, Done Once

Things went downhill for a bit after the haircut on 6^th.  Pains came back so the afternoon was mostly naps after the pain meds.   I’m feeling better this morning but it is only 8:15 and I’ve been up a couple of hours already
 

Last night most of the rest of my hair fell out,…………………………….

.

Not quite as bad as I thought it was going to be, however, bundles from my beard have begin to come out.  And I know for a fact that me without a beard is laughable; with no hand and no beard,  lord help those of you that have to look at.  So I’ll post some more pictures and please feel free to laugh at them.  I do.

Maybe more later.

OH yeah!!!! Bonus points for the first player to tell me where the title of this post comes from.  Hint; In the movie, "DAY 7" would have been 100 Stones."

Boone

March 6, 2013

DAY +5

It’s been a good day so far.  It is evening now and I have a only low level pain.  No morphine so far today but I did get a bit of Oxycodone.  It’s been a bad day for appetite so I’m drinking lots of Ensure.  I am having an occasional bout of nausea so I’m getting drug for that. I have barfed a couple of times but fairly easily; Far less severe than a “hold my hair back please” eruption. I’m also getting a different drug for the bladder pain.  A very nice Urologist came in and explained the pain is not from an infection but likely where the chemo has eaten away at the mucous lining.  He changed the bladder so now my pee is blue instead of orange.  I failed to notice if there was any green during pee during the transition to blue.  He said the bladder lining only takes a few days to heal back so I hope to be past it soon

The big event of the day was the haircut.  Something that I have been concerned about.   I have been dreading how I would look with a shaved head.  As it happens I’m not quite bald yet. Tonight as I type I have rubbed my head a couple times and a light covering of hair covers my hands.  I’m pondering going ahead and cutting the hair with the closest setting possible on my hair trimmers.  I can’t actually shave the head because we are not allowed razors.  The look is not as bad as I thought it would be but it’s yet not bald.

 

Friend S is the one that did the cutting.  Between us we came up with a plan for the time when I will be billiard ball bald.  I provided the baseball cap; a Big Orange cap of course.  Friend S supplied the hair and this is what he created with the two................................

 

 

I’m calling it. “Old Hippie Gets Drugs Direct From Hospital”.  The lovely young lady handing me the drugs is Nurse L.  She was my nurse the first night here.

Well that is pretty much the events of the day.  Perhaps a bit boring but much better than pain and nausea.

Later.

Boone

 

March 5, 2013

DAY +4 – HAIR TODAY, GONE TOMORROW

 

Not so good a morning but evening now and all is OK.  The UTI as it turned out is just the effects of chemo and is going to be around at least a couple more days.  That means more pain meds and, unfortunately, the cost of pain relief includes not feeling well for a while.  But I am shaved, showered and ready for bed and feeling good.

Speaking of shaving; my first bit of hair came out this morning so longtime friend and hair guy Mr. G is coming here tomorrow to do that which I knew was to come. Cut off all my hair.  Like it hasn’t been since I was born, except the beard stays.  This is going to be ugly.  Pictures tomorrow to prove it.

Well, Nurse B just came in with the evening’s drug course so I’ll turn this over to Pauline.

 

Boone

 

Pauline here.

Today was better than yesterday.  No crying pain today, just a lot of grunting and groaning.  I gave him a massage that probably hurt more than helped…I don’t have a light touch apparently.   (Not true.  It did help.  B)

After a fairly good nap in the midafternoon Boonie took his shower and changed into clean pajamas.  It takes 3 people to change the shirt.  Bags have to go through, then all the hoses, and oh crap, put them in backwards, have to undo and start over.  I guess I need to start paying better attention. 

Even though this will be my second round doing caregiving, me thinks this is not going to be “as easy” as it was with my demented parent.  No sloughing off allowed.  Just thinking about it makes me crazy.  I’m an outdoor person, I love fresh air and sunshine. I want to dig in the dirt, I want to see all my flowers bloom.  I drive a convertible.  

Being cooped up in the condo to keep an eye on Boone may be the hardest thing I’ve ever had to do. 

Coming to the hospital for 5-6 hours a day is no big deal.  At least I get to get out and about and on good days go to the farm to play in the dirt, maybe even have a fire.  I love sitting out at night with a fire.  Occasionally wild animals will pass by, and always the coyotes are howling.  The condo is just a big bird cage.  Great view, but 15 floors up doesn’t allow for much of a connection with the outdoors.

Ok, so I’m whining.  It’s all pretty damn scary.  I’d hate to have to depend on me for care; especially with all the meds I take just to not freak out these days. 

Tonight friends from Costa Rica Skyped in and another friend Skyped as soon as their call was over.  He had movies of the Pink concert from the night before.  We would have been there, for sure.  She puts on a great show.

Later.

Pauline

 

 

March 4, 2014

DAY +3 - PART DOS


Hi  Pauline here...Day T+3 and counting.

Things aren't so great at the ranch here.  Since Buffalo Boonie blogged the day has gone pretty sour on him.  Seems the UTI may be a just a reaction to the chemo but either way it's the same pain.  There was a second culture started this morning to see if its any different from the one started 2 days ago.  Hopefully nothing will grow and it will be only a chemo reaction, not an infection.

Crying pain. 

Right now this very minute yet another Nurse Goodbody has come to the rescue.  Lots of pain meds and some stuff to line his esophagus to calm down his sensation of having something stuck in there.  Still he is at every opportunity reminding the nurses that the morphine is due at 9PM.  They all know, believe me they all know.

Boone's blood count numbers are continuing to drop, but are still within a decent range.  No blood transfusions needed yet.  Call me crazy, but I think its the Dandelion Root Extract he took for the last several months.  Dr. S at one time said "whatever it is you are taking, keep it up"  so I had Boonie on 2 capsules a day.  His bloodwork was normal a few times and only a tad out of range at other times.  When he checked in his numbers were pretty much normal.  Its just that damn DNA of his that is bothersome.  I haven't figured out how to change that yet...give me some time...

If you are reading this blog because you or a loved one has CMML, Google "CMML Dandelion Root".  There's a study from Windsor University (Canada) that say DRE will kill three cell lines of CMML. My girlfriend from high school has a son that is a microbiologist from a well respected university in Pennsylvania.  He looked at the study for me and said it looked legit.  Also Google for DRE in relation to pancreatic cancer, melanoma, colon cancer, and I think there was a study about DRE and breast cancer also.   DRE is some amazing stuff.  It is supposed to kill all sorts of pre-cancer cells. 

Of course consult with your doctor ( I don't even play one on TV) and ABSOLUTLY DO NOT try taking DRE if you are in the hospital, or are already on chemo.  But if you are in a holding pattern...the watch and wait phase, either go buy some at your local vitamin store, or go dig some up out of your yard.  It grows all over the planet, except I guess in the Sahara or Death Valley. The instructions I found say if you are digging fresh ones, don't wash them, the dirt is good for you.  We just went to the GNC to get ours.  I take it too.  Interesting thing about it, it seems to reduce those tiny wrinkles around the eyes and mouth; or maybe it just blurs your vision.  But I swear I think I look better.

March 4, 2013

DAY +3 - Howdy Partners!
 

Buffalo Boone here.  Times are kinda slow here at the Lazy B right now.  Things being what they are ‘n all it takes me a while to get up and goin’.  Take this morning.  It took me dang near an hour to get up, brush my hair and teeth, and eat a breakfast that had been brung to me. Course now to be fair I don’t get to sleep long stretches here.  Why last night I even took me one of them sleepin’ pills.  I still woke up a lot, or got woke up but it did make it easier to get back to sleep once the business at hand was done.

Don’t know how much you seen of the place here.  Its small be we call it home.  Got a nice bunk house, at least once you get used to it.  Got to get Pauline to bring me my good pillow though.  Got a seatin’ area that’ll hold four guests plus me in right comfortable style and my seat’s got a table that goes with it.  We even got us a storage area for spare vittles ‘n such for when the cook don’t feel like messin’ with anything.

Speaking of the cook the food here is pretty dang good.  I ain’t real sure what some of them vegetables are.  Maybe I could tell if I seen ‘em before they been in the stew pot so long.  Anyways I usually pass on them but the rest is right good.  And the help here is real good too.  We got lots of ladies that take turns coming in to see that the place is well kept and everybody is doing what they’re supposed to do.  There’s also three overseers that take turns coming around.  Smart fellers too.  Always ask a lot of questions. 

There is this one feller that’s beginin’ to bug me a bit.  Name of Mark and the son of a gun follows me every place I go and I do mean every place.  And he never says anything but he mumbles all the time.  And to top it off sometimes, especially at night, he’ll just take to holler’n his fool head off till one of those ladies comes and calms him down.  I’ve tried to shut him up a couple of times but it don’t seem to work for me.

We’re really uptown here too.  Got us lots of fancy equipment and computers.  We got us a bicycle that you ride but it don’t go anywhere is just make this little kinda TV light up and show some numbers.  Oh and we got this new thing here………..

It’s what you call an aspirimavator and what you’re supposed to do it is aspire to blow in that tube till you make the little blue thing at the bottom go up to the top.  I ain’t great at it but I beat heck outta Mark there.

 

I got me one other new thing here too.  One of them nice ladies that I told you about comes up every day and does her livin’ best to get every nasty little critter and spec of dirt of the ranch.  I’m telling you she scrubs and wipes and picks up like nobody I’ve ever seen.  Her name is MizzDe.  I can’t really say how she come about the name.  I’ve heard some tales but I don’t believe none of ‘em.  Anyway MizzDe come in the other day and give me this little critter……………….

 

 

His name is Coco.  MizzDe says he comes from a magic place and has all sorts of special powers.  I ain’t seen any powers yet and tell you the truth I don’t care if he’s got any.  I just like the way he smiles at me.  He is as sweet and quiet as he can be.  And since it was MizzDe that give him to me that’s how I know them stories about her ain’t true.  A woman like that would never have give me a critter this polite and shy. 
Hell he don’t even like peanut butter.

 

Buffalo Boone out.

 

 

March 3, 2013

DAY +2, PART DOS

 

Hi, Pauline here.

T+2 and counting.  I'm here at the hospital with Boonie.  He's sleeping now.  The large amounts of drugs are wearing on him.  He said last night he didn't feel very well, and this UTI is a bit worrisome.

I just can't help myself; all I can think about is Frank Zappa singing "Why does it hurt when I peeeee?"   One of Boonie's favorite sing-along songs.

Now that Boonie is part female we are watching for changes.  So far, other than the UTI, (something all us ladies know all too well) he is talking more.  He is definitely more affectionate, more gracious, more "pleases" and "thank yous".   He commented he wanted to do laundry, but that was before the stem cells....maybe I will be able to get him to do all the house cleaning, except for the cat box...don't think Dr. S would approve.  I should start a list.

Now we just wait.  His blood counts dropped; the white count and the neutrophil counts both dropped by about 50%.  Heis headed for this nadir that I had not read anything about or recall being told about specifically.  Yes I knew his marrow would be killed by the chemo but I thought it would go to zero or near zero counts by day 0.  Instead, his blood cells are still living, but dying off as they reach the end of their life spans.  So far, he has not needed a blood transfusion.

This transplant procedure is an amazing thing.  I wonder what sort of mad scientist first thought, "What will happen if I kill someone's bone marrow and put someone else's cells in there?"  And who was the first person who said "Me first! Me first!".   That must have been one wild party they were going to or some mighty good drugs they were on to think this stuff up.  The image of Bill and Ted comes to mind...."like, wow dude, what if we could suck our bones dry, then refill them?"......yeah those must have been some really good drugs.

Never the less, we know that creativity comes from many sources, so Rock on Dudes,  whoever you were or still are.  Of course our Congress has cut off R&D money, so whatever fantastic epiphany is on the horizon has just got to wait.   Never mind curing cancer or diabetes, we got to have more ways to kill people, I mean really, what is most important here?  Enough of that.

There are not enough good things to say about how glad we are that we chose the Sarah Cannon Cancer Center for Boone's care.  The doctors and nurses and support staff are all top notch on the ball, hardworking, and caring people.  It is amazing.  The food is not normal hospital food either, always a plus.

I guess I've watched him sleep long enough now.  I think I'll take the critters to the country, for some R&R.

 

Good sleep my Prince.

XOXO

March 3, 2013

DAY +2, BUT WHAT DAY IS IT?

Let me see.  The computer says March 3^rd.  I just watched Meet The Press so it must be Sunday.  Funny how fast you can lose track of even the day of the week when they are all the same.

OK ladies, my first day as a woman, it appears I’ve come down with a touch of UTI. They are giving me something for the pain but there are not enough drugs in the world to treat that pain fast enough as far as I'm concerned.  What I’m getting ain’t fast enough but they tell me it builds up.  I sure hope so. Last night I took my first sleeping pill ever, that I know of, just to avoid as much of the issue as possible.  The pill this morning is kicking in but at a glacial pace.  One fun side effect though; I now pee Big Orange.  I thought about including a photo but decorum ensued.

Instead here is a photo of Mark wearing the flower you receive on Day Zero.

 

Mark and i are getting along pretty well.  Gale brought the custom made handle for his leash and we installed it but he is still resisting a bit.  Gonna have to talk to him about that.  I don't know if it is odd or natural or what but I began talking to him as soon as he was named.  
"Come on."
"Will you please turn around?"
"What are you beeping about now?  It's 3AM for crying out loud!" 
It works for me because we are spending a lot of time in close contact.  He is only out sight when I’m asleep or in the shower and it will be that way for another ‘too long’.  So far he doesn't talk back except with dripping and beeping noises.

Well I think I've just rambled just long enough to occupy my mind.  It appears that after an hour and a half the pain is beginning to work its way down to levels not involving curse words.  I’ll take that as a good sign for the day.  Some friends went to see Pink last night and I got a few pics but I’m expecting full video today.  That should be fun. Pauline will be here in a bit.  That will make me smile.  Sun is shining and I’m still here.  So far so good.  Later ya’ll.

 

Boone

 

March 2, 2013

DAY ZERO – PART DOS

 

I was planning on telling you all about it after the transfusion was complete but there was one part I had not thought about.  After the last of the stem cells made their journey down that three feet of plastic and deposited themselves near my heart, I got a good dose of Ativan and Benadryl.  Good night Mr. Boone.

I arose from bed, can't say ‘wake up’ because they wake me all the time and can’t say ‘got up’ because I got up a few times to pee.   So I ‘arose’ from my post-transplant sleep after about twelve hours feeling pretty well.  I missed two meals so I feel a bit hungry.

I feel tired.

I feel groggy.

I feel drugged.

I feel ‘like a filly who is ready for the race’.  (that one’s for you Gael)

The transplant itself was sort of an uneventful party. Dr. S dropped by before the procedure.  He is busy as they did two other transplants this morning as well. Of course Pauline was there as was Mr. S, a friend and a BMT recipient himself.    LA, the Cell Keeper, transferred custody of a small bag of cold slushy stem cells to Nurse G who plugged them into me. They did that two more times.  We watched as what I swear looked like orange fluid flowed thru the tube.  I know what you are all thinking, yes it looked BIG ORNAGE and yes I was proud. Nobody else mentioned it.   Pauline took some pics and video I believe so we’ll hold for now until the official review is complete.  Only about a half hour show all total.  A good time was had by all. Mr. S headed back to work.  LA went back to her lab.  Then came the cocktail.  Then came the nap.  So now it’s 4:24 AM and I’m wide awake.  I have been for an hour.  The floor is pretty quiet. We'll see what my first 'new' day brings.   The next couple of weeks will be,......will be,……………..let’s just say important. 

Boone

For those of you in other countries BIG ORANGE is a nickname for the University of Tennessee of which both Pauline and I are proud graduates.  And if I may, I would be honored and pleased to have you leave a comment on the blog.  If you prefer you may email me a dboonie1953.@gmail.com.  In any case thanks for dropping by.

March 1, 2013

 

DAY ZERO

 

Hi Pauline here.

Well after a night if lots of pills and some vodka, I did go to sleep.  Lyla woke me up at 6:45.  Good thing or I would probably still be asleep.  Hope I actually get unfogged before the transplant.

I gather that the transplant is going to be here in his hospital room.  I'll be here as will a few others. There's not much to watch, 3 small bags of juice and that's it.  The lab tech was telling us yesterday that the cells will be defrosted only to a slush to be administered.  They die at room temperature, so why don't they die in the body?  Another question to ask.  I had a cold blood transfusion once and it was not pleasant at all.

It is still strange to sit here with Boone, he's reading all his emails and blog comments; y'all keep those emails and comments coming, he's thriving off of them.  Actually, I'm beginning to wonder if this is all just some strange dream...how can one be so sick and not sick at the same time?  It doesn't make sense to me, but I'm certainly not complaining.

Dr. S just stopped by.  We both really like him and are very glad we are here, and not in Seattle, for all kinds of reasons, and glad not to be at VU, just because.  Nothing against VU, we just like it here, everyone is nice and on top of things.

Right now, I wish I had not done so much research into CMML.  What you don't know can't worry you to death.  Boone didn't want to know, so we really haven't talked much about it.  I cannot bring myself to prepare for Boone's return to the condo for fear of it being bad luck to do anything before it is absolutely necessary...or maybe that's just the architect in me recalling so many hours, weeks, and months of wasted time doing work, not getting paid for it, and having it trashed because someone changed their mind for the tenth time.

The dogs seem to be getting over their complete confusion about the routine changes.  This morning they all went to nap rather than walk me to the door.  Leukka, Boone's omen, jumped on my lap this morning, wrapped her front legs around my neck and laid her head down.  She held onto me for several minutes.  Can the animals possibly know something is amiss?

The biggest laugh around here is Ms. D the housekeeping lady.  Boone double dog dared her to get him a blow up doll for his pole, Mark O.  Or maybe just a soccer ball with a face painted on it would be enough.  Poles should be personalized, after all they are with the patients everywhere they go.  One lady here has Mardi Gras beads all over hers.  Hum, maybe that pink boa would be good.  It would go with the hobbit feet very nicely, except we might need to change the nail polish color.

 

Boone will blog ya later.