This is Pauline, Boone's wife. Every year on or near his birthday, he has his annual physical. His doctor told him that he had "Immature blood cells" and referred him to a hemotologist. To Boone's great surprise when he arrived for the appointment, the hemotologist was an oncologist. They drew blood and the Oncologist, Dr. K, wanted to know why I was not with him. Next visit he said, I better be there. A month later, we went to the appointment. Blood was drawn. Dr. K. said it could be a couple of things, and ordered a bone marrow biopsy. On the 3rd month, we heard the diagnosis of CMML.

Thursday, February 28, 2013


February 28, 2013

DAY -1


It is  quite late in the day as I post this so most of you may read it with “tomorrow” actually being today to you.

 
Tomorrow is DAY ZERO, my new birthday. At give or take 11AM I get the bone marrow transplant from my Sister Donor. It is my last day with my own blood.  Tomorrow I become a chimera.  I will have different DNA in my blood cells than the DNA in the rest of the cells in my body.  I would love to say that I will now have a second career as an unstoppable killer for hire but I am afraid that it actually means you could kill me, dispose of my body, and based on the blood they wouldn’t even look for me.  They would look for the body of my Sister Donor.   Hopefully my sister would fill them in, after all she gave me the blood cells ………………...This couldn’t be some incredibly inscrutable murder scheme could it?  Nahh.

As I posted yesterday I am feeling much better. I am certain that we chose the right place for the transplant. I have adjusted to life on the BMT Unit.  I sleep well considering how often they have to wake you. The food here is as a matter of fact quite good and I have no dietary restrictions.  I'd love a good gin and tonic but that’s going to have to wait another year or so.  I shower every day.  My room is nice.  It is large and has a good view.  I get my mile walk in almost every day, with Pauline when she is here and with my ever present IV pole in tow in any case.  That thing is without question the worst part of being in the hospital.  They have drugs for everything else but there is no cure for the pole.

I learned from Robin Roberts that she named her constant companion.  In her case she used her “stripper name”.  Based on all the rules of stripper naming I ever heard  I’ve never had a good stripper.  So without further ado meet Mark.

 

I know a Mark R., a Mark W., a Mark C., a Mark H., two Mark P’s and two Mark B’s.  This is Mark O.  (Insert obligatory joke here).  Sometimes I feel like Chuck Noland, the guy in Cast Away because I find myself talking to him, uh, it.  “Get off my foot your son-of-a-bitch !”  
If you look closely at the photo you may be able to make out the cord tied to Mark’s base    I despise pushing him around the place so I made him this leash. Now I can drag his sorry butt behind me.  My friend Gale is going to make me a nice handle for it. To tell the truth I think Mark kind of likes it.  Aside from being a pain in the ass he may be something of a masochist.

It’s funny, odd, stupid, ignorant, honestly I’m not sure what but I am really doing OK, at least most of the time. All of the folks here at the hospital are great.  Well except for one lady who seems to be in a bad mood every time I see her but thankfully that is a rare occurrence.  Everybody I know has been incredibly supportive.  I couldn’t ask for any more help from the office.  Heck even the folks at the insurance company (speaking of the office) have been very helpful and supportive.  I have come to the conclusion that this, and probably other diseases that have a similar progression and prognosis, are harder on the close family than the person with the disease.  I know that is true in my case.  That truly is hard to deal with.

Well, I thought when I started that this would be a really long post but there’s not much left to say.  It’s late.  I probably should sleep.  My first real side effect has begun, diarrhea, oh joy.  I don’t have to run to the toilet because I have the colostomy bag left over from the intestinal surgery.  That does, however, lead to another issue.  Colostomy bags are only so big.  Diarrhea, as other bag wears know, is fast and more, shall we say, sneaky.  That combination leads to the possibility of rolling over in your sleep onto a balloon filled with something more than hot air.  The possibility of the balloon popping may not be likely but I bet I sleep lightly.  I damn sure ain’t taking a sleeping pill.

Thanks for reading.  Thanks ever so much more so for the comments.

Boone

 

P.S.

If you make money selling that murder plot then you owe me a cut.

 

Wednesday, February 27, 2013



February 27, 2013

DAY -2

You will be happy to know that I am feeling much better today.  At least I certainly hope that makes you happy.  If not then stop reading this……….................................…….asshole!
 
Sorry if I brought you down but between the My Chemical Romance, getting my bed fixed, a couple of miles around the unit in my hobbit feet and some new drugs I, at least, am feeling much better.  So much so that, I had intended to write much more here but alas it is now almost 6PM and I am tired. So thanks for coming and know that more is to come.

 
Good night.

 
Boone
 



 

Sunday, February 24, 2013


February 24, 2013

I’M STILL HERE


And it’s making me nuts again.  Thought I learned something in my “training day” hospital stay.  And maybe I did.  That stay was 10 days and the first four were really easy because I was so high on morphine for most of it that I couldn’t have told you my name.  This time has been four days now and I’m going nuts with nothing to do and being tied to this pole. So I need more drugs!!  Remind me to ask later when Dr. S comes by.  He is here I saw him while Pauline and I were walking earlier.  But walking and typing this don’t quite cut it for things to do.  I miss little stuff.  I want to clean up the kitchen.  I want to do laundry.  Something that gets me off my ass.  Or maybe enough drugs to put me on my ass.

Most of you probably know the truth.  Truth is what’s hard about being in the hospital is BEING IN THE HOSPITAL.  I want to say “the F’ing Hospital” but Stella and The Donor are going to read this so the rest of you just fill in the blanks in your head.  And the damn IV Pole, boy do I hate that thing.  I hate being tethered to it, being tied up, being tied down.  It’s been four days.  I have about TWENTY-four days to go and I’m already going nuts.  This was my biggest fear.  That I wouldn’t be able to do what I know I have to do.  I’m not afraid of Leukemia.  I’m not even afraid of dying.  I am scared to death of the next twenty-four days.

And like always, it helps just to say that “out loud”. I know it’s time to strap on the boy boy pants and stop whining.  I hope that I can.  Everybody has their bear to cross.  Friend G just called.  Their week at the beach turned into a week in the rain but they made it work.  So let me leave you with this.  Find a copy of “Famous Last Words” by My Chemical Romance.  Then put on the headphones and crank it up. 


I AM NOT AFRAID TO KEEP ON LIVING.
I AM NOT AFRAID TO WALK THIS WORLD ALONE.
HONEY IF YOU STAY, I’LL BE FORGIVEN.
NOTHING YOU CAN SAY WILL STOP ME GOING HOME.

Boone

 

Bonus Time, Bonus Time !!!!

As I typed, Pauline was sitting across the little table here typing away.  I have no idea what she wrote so let’s read it together, shall we…………………….

 

 

Hi this is Pauline.  Boone asked me to write something in his blog.  That's only fair, he wrote in mine about daddy and his LBD.  He was the fly on the wall, seeing simplicity where all I saw was chaos.  Enough of that.  This is the real world of CMML.

Today is T-5.  Boone has been here now 4 days.  It feels like 4 weeks.  I try to stay here for 4-6 hours a day, and it wears on me.

I cannot say enough good things about the transplant unit here at Sarah Cannon.  Everyone is top notch.  I haven't seen a slouch around here yet.  Even the cleaning staff makes the effort to get your mind off what's going on, and get you laughing.  And every nurse here could be aptly named Nurse Goodbody.

It's times like this you become so very grateful to have been born in a time where there is TV, video games, the Interwebz...  Especially in this situation where visiting is best done by email, Skype, or FaceTime.  No chance of infection there.

Reality sets in slowly.  It seems I'm always behind in space time somehow.  Everything is warped.  There is only guessing for what happens next.

In the beginning, Boone didn't want to know anything about CMML except what the doctors were telling him.  I wanted to understand what the doctors were telling us.  Blood counts have no meaning if you don't know what normal is supposed to be.   Variations in the white cell counts don't mean much until you know what each of those blood cell lines do.

Basically, what I've learned is this disease is so rare that if your doctor has ever had a CMML patient before you should think of them as we'll experienced.  I think Boone is this group's second CMML patient.

It's difficult to say what is the hardest part.  I cannot imagine what's been going on in his head for the last year.  Being told you have a disease that is 100% deadly sucks to put it mildly.   I just about lost my mind last spring when he got the diagnosis, so my PCP started me on Zoloft; I didn't want it at the time, now I'm taking 4x the original dose.

The very idea of bringing him to this place when he feels good, has good blood counts, and high quality of life; then to see him each day after the chemo, knowing in a few days they will have taken him as close to death as they can, hopefully without actually doing it.   It seems like leaches or bleeding to rid the body of the disease.  I also feel very confident that in 15-20 years cancers of all types, and auto immune issues of all types will be a thing of the past, and they will look back at this as barbaric.  But how else do you learn?  If it were not for the Genome Project which started in the late 90's, what they know about these diseases would not have progressed as it has.  Everything is down to the molecular structure within the DNA.

One screw up and your screwed.

 

Friday, February 22, 2013


February 22, 2013

SO FAR, SO GOOD


I slept well last night, thus making up for the first night here.  I’m feeling fine.  I’ve started my second day of chemo but no side effects so far.  Doc says that they typically take a couple of days or so to kick in.  I can wait, no problem there.  Maybe they will decide to hold off altogether. Sure, that could happen.  Cancer is all about the odds so as with quantum physics almost anything is possible. 

I checked the “all time” stats on the blog this morning and found it interesting.  I knew there were friends in the states reading it and some in Costa Rica but I had four hits from Germany.  Most interesting was that I have one each from the Ukraine, South Korea, Latvia, Mexico, Russia and Sweden, prooving that both cancer and the interwebz are universal. I guess that should be international but if the visitors from other planets/dimensions stay here long enough they may get it as well.  So to any and all of you reading from other places please leave me a comment.  If you don’t want it to be public then just email me at dgregory@gouldturnergroup.com.  I’d love to hear your story and you can know that you are not alone.

Not much else to tell today.  I got DOOM3 the BFG edition running on my laptop so I can kill monsters there while we work on killing the one inside me.  I’d tell you what I really call it but an old friend named Stella is following my story and I never ever want to offend her. 

Stella is now over 90 and we’ve never met face to face but she followed our story when Pauline’s dad was sick.  She is one of the most beautiful souls you could ever learn to know.  For proof of that I offer these words that Stella wrote in a letter to Pauline when we were going through the illness of Pauline’s father.

A family spending years together creates such a wonderful mural of life. At the time it is being painted, it appears to be bits and pieces of color. A picnic here, hard work there, surely it will go on forever. No, it constantly changes, and sooner or later it is finished. Looking over the lovely work, all the episodes blended together, the rosy pinks are prominent with the darker colors in the background. The dark colors fade and disappear, leaving the happy memories. Right now you are painting with dark blues and grays. They are important to the finished work. Be proud of your work. Mommy would be proud. She would say, "Well done, my child".

I had thought that perhaps, before I went into the hospital,  Pauline and I might go to New Orleans with a couple of friends and take a culinary tour.  Mrs. A knows the really good places there and then Pauline and I could drive a few parishes and visit Stella.  Didn’t manage to pull that off so Stella give me a year or so and I’ll make it happen.

So things are kinda slow right now here at the Big C Ranch and Supper Club.  But ya’ll keep checking in and sooner or later the floor show will begin.  In the meantime my directions to the team here are the same as those that Roger Dorne gave Rick Vaughn in Major League just before the big out.  Check it out.  I’d lone you my copy but it’s VHS.  Stella don’t you dare look and please don’t anybody tell Stella what BFG stands for.


Boone

Wednesday, February 20, 2013


February 20, 1983

PART TWO

H and R just left from a nice long visit.  Kathi is at home comforting Tweak who is all confused.  No chemo today just installing the PICC, Peripherally Inserted Central Catheter and IV of some anti-seizure meds.  Chemo starts tomorrow afternoon.  Except that I can’t get DirecTV Everywhere to work on my laptop I am doing quite well. I guess actually getting started takes some of the stress out of it.  Of course my opinion on that may turn ninety degrees tomorrow afternoon.  Sleep well all.  I’ll try and do the same.

UPDATE:  Chemo starts at 6AM.  Two hours and twenty-two minutes from now.  At least maybe I'll be tired enough to sleep through it 

Boone
February 20, 1983

TWO HOURS AND TWENTY-FOUR MINUTES TO GO

Drinking coffee and typing.  Leukka is in my lap.  Pauline is still in bed.  So are the dogs.  I'll walk them in  a minute.  It'll be one more thing I won't be able to do for a while,  Anybody want to drop by the condo about 7AM and walk them?  I'm sure Pauline would appreciate it.  Probably offer you coffee.   On second thought don't do that.  She would just get up earlier to clean up before you arrived

Robin Roberts return to Good Morning America is on TV.  Just picture, no sound since most of the girls are still asleep.  She has nicer pajamas than I do.  Past that I'm taking it as another omen.

Does make me think of one more thing though.  One more fear.

I'm gonna look lousy bald. If you want to see that you're going to have to come visit.

May post some this evening, may not.  Everything from this point on is a new adventure for me

Boone

Tuesday, February 19, 2013


February 19, 2013

TWELVE HOURS AND FOUR MINUTES TO GO


Just finished the dinner and visit with the old friends.  Pauline is playing cards on her ipad.  I’m trying to figure out what to say here. 
 
We went to the pre-admit today and they took blood, height and weight.  The blood is for testing.  The height and weight are for chemo calculations.  Dr. S came in to check on me.

“Buenos dias Dr. S.”

“Good. How are you?”

“Terrified and ready to get started.”

“Well a little terrified can be a good thing.”

I guess so but…………….

We came home and I set about packing for the hospital.  Pauline went out to, well mostly just to go out. Mr. G who has been cutting my hair for almost 30 years came by and gave this batch of hairs their last cut. Pauline came back and we took a nap.  Not exactly an exciting day but excited is not how I’m feeling.  I may be a bit numb.  It is all kind of hard to wrap your head around.

I am still scared. I know what the odds are so I’d be a fool not to be.  But I am ready to get on with it. I made it through the evening and good-bying with friends without breaking down and honestly I’m feeling okay.  Tomorrow when I say good-bye for a while to Tweak and Lyla and Leukka I’ll lose it.  I know I will.  What I’ll feel the rest of the day I do not know.  I’d love to go in and take a long nap until the year has passed and I am psoriasis free; but that’s not going to happen now is it.

No it is going to be a long hard road and it is going to be bumpy.  But I’ve got Pauline and Leukka and all of you to get me through it.  I think I'll even be able to sleep tonight.

So Mrs. Davis let the ride begin.  My seat belt is fastened.

 

Yes, I know the actual quote is “bumpy night” but my brain is not functioning at its most creative right now yet I still thought I should write something tonight.  It’ll get better later.

That’s the plan anyway.

 

Boone

Monday, February 18, 2013


February 18, 2013

ONE DAY, TWENTY HOURS, NINE MINUTES AND FOURTY THREE SECONDS


A slow Monday morning.  Pauline walked the dogs, piddled some and went back to bed to lay down for a bit before getting ready for lunch with a friend.  I’ve been fiddling with the new laptop; a bit of new music; ordered a keyboard light.  We had a marvelous dinner with a group of close friends Friday night. Three of them came in from out of town.  One drove four hours; two drove six hours.  How cool is that !!  Last night we relaxed a home. Tomorrow night we are having dinner with our oldest and bestest friends.  Tomorrow morning at 7:30 we report for the clinic for Pre-Admit.  Wednesday at 10:00AM I report for admission to the transplant unit and the chemo begins. That is one day, twenty hours, nine minutes and 43 seconds from right NOW.  And now it’s even closer. 
 
I’m still feeling good and doing okay. Pauline is about the same. Her feet are bothering her.  She can fill you in on the details if she wishes.  For me the strange thing is that I feel fine and I will continue to feel fine until two days from now when I will, of my own accord, be made sick as a dog.  It gives me some perspective on women who choose to have a mastectomy in order to avoid breast cancer.  They have, if anything, a harder choice because in my case the odds of both options are not great. They are not guaranteed that they will get cancer.  I already have it and the BMT offers the best odds of survival.

Of course I have moments when I’m really down but I’ve come the point that I think I’m ready to get started.  I’ve gotten done most of the stuff I wanted to do to get prepared.  I’ve been eating pretty well and getting some exercise. The choice has been made and I’m not going back.  I think maybe mostly I’m scared to death and this waiting ain’t especially easy either.

I’ll leave you today with something that made me feel really good.  I have a friend who went through a BMT some years ago.  His cancer was different, not as rare as what I have and the BMT had better odds.  On the other hand his transplant only put the disease in long term remission whereas mine, if it goes perfectly, will cure the disease and, as noted, my psoriasis. But cancer treatment is all about odds and no matter what your particlar odds are it is still scary.  Just ask your friend, everybody has at least one that has dealt with it.

Anyway……..my friend brought me the box of charms that he kept with him while he was in the hospital.  It contains three bottles of holy water as my friend is a practicing Catholic.  I haven’t touched that yet because I’m a bit afraid that it might burn.  There were three laughing Buddhas, one for Joy, one for Health and one for Hope.  There is a piece of the Berlin wall, complete with spray paint, that a friend of his brought back from Germany.  It is quite an honor to hold something like that in your hand.  Pauline said that it was like holding a moon rock.

When my friend drew the last item from the box he held up to me a ring box.  He opened it and showed me his Saint Peregrine Laziosi medallion.  Mr.  Laziosi is the Patron Saint of Cancer and Running Sores.  I held the medallion in my hand and a huge smile spread over my face.  I felt better already.  I may have cancer but at least I don’t have Running Sores.  That would really suck.

 

By the way the items are on loan and I would never think of keeping them anyway; at least unless a piece of that rock breaks off.  So if one of you Catholics out there wants to get me a Saint Peregrine Laziosi medallion.  I will wear it proudly.  I may not be religious but I’m not stupid either.  I’ll take all the help I can get.

 

Boone

 

Friday, February 15, 2013


February 15, 2013

MY LITTLE OMEN

Yesterday in the post I thanked Leukka. This is me and Leukka having a nap………..
 


 Leukka is my omen because she showed up the day I got my diagnosis.  We believe that she is the daughter of a former house cat (not ours) named Rufus and an unknown but very kind and very smart mama cat.  We, meaning Pauline, found her in the garage in a box with the top closed.  She was clean, well fed, and all by herself.  We brought her in and (Pauline mostly) bottle fed her. Tweak, one of our dogs, licked her butt like a good mama does so the kitten will poo.  I named her.  After eight days she opened her eyes and she looked like this………..
 
 
 

So obviously Leukka grew up.  She is now 11 months old and she may be the sweetest cat we’ve ever had except when she is tearing through the house, attacking Tweak, destroying toilet paper, or biting Pauline. She’s never seen another cat.  She thinks she is a dog albeit a very special one (she is a cat after all).  She chases toys thrown down the corridor along with the dogs until she gets bored and then she hides in the cross corridor and attacks the dogs as they run by.  She sleeps curled up with the dogs during the day.  At night the special part takes over and she gets under the comforter on the bed while the real dogs sleep on the comforter on the floor.

Tonight Leukka is at Dr. Vet’s office.  We had her declawed when she was a baby but he missed one claw.  Despite his protests to the contrary, it is not an uncommon occurrence.  We know of two other cats on which he missed the same claw.  One of them was ours and he was almost named Bird in honor if his lone claw.  Interestingly it is always the same claw.  We think of it as Doc’s trademark.  Anyway we didn’t consider it a problem since Festus, as he was called instead of Bird, learned to use his claw to great advantage.  But the other night Leukka poked a hole in me.  That’s OK right now but after I return from the hospital being poked by a claw on a foot that just got used in a litter box is not going to be something to ignore.  So tonight my little omen rests in a cage at Doc’s place.  I miss her so you get to read this.

Boone


P.S.  (How many of you even remember what that mean stands for?)


This is Tweak and her buddy Doug…………………………………..

For more on them see Living With Lewy Body e-book at Living with Lewy Body ebook Specifically the entry called “When I Die, I May Not Go To Heaven” from March of 2008.

 

Thursday, February 14, 2013


February 14, 2013

FIVE DAYS AND FOURTEEN HOURS TO GO

Yeah.  I’m counting. 

My sister donor just left the house.  Yesterday she cranked out 6.4 million little stem cells.  I’ll get about 4 million of those and the rest will be frozen.  If all goes well the little suckers will stay frozen until I die of old age at our mansion in Costa Rica.  I learned over the last week and a half that my sister is afraid of needles.  I never knew that.  In spite of that over the course of four days she took several shots in the stomach and then lay in bed for about five hours giving blood through a needle large enough that it didn’t damage the cells.  How do you thank somebody for something like that?

While I’m thinking about it I want to thank everyone who is thinking about me and praying for me.  I am not a religious person but I cherish every prayer and good vibration sent up by any of you out there.  Most of you will never read these words but I can say with great conviction that knowing that you are out there thinking and caring about me does help.  They were a large part of helping me get through the down days during my infection/abscess/surgery/recovery last year. 

So I thank my sister, thank you, thank God, thank KA,  thank the Flying Spaghetti Monster, thank Pauline, thank Leukka, thank EVERYBODY and EVERYTHING.  I’ll take all the help I can get.

So please keep those prayers, thoughts, cards, letters, vibes, emails, posts, likes and comments coming.

Boone

Friday, February 8, 2013


February 8, 2013

TWELEVE DAYS, BUT WHOSE COUNTING
Pauline is out and about this morning.  I’m making a grocery list and watching Kung Foo Panda 2.  My sister is in town and made it through all the tests.  They weren’t all flying at full mast but she passed with colors.  Sunday she starts the shots that make her body produce copious amounts of stem cells.  Those cells are primarily in the skull, the breast bone, the thighs (tibia and fibula if I remember high school correctly) and the hips ( mostly right at those bumps Dan Aykroyd had on his back side in Coneheads).  The Donor produces so many stem cells that some people get bone pain, anything from minor headache to full body pain similar to what you get with a bad case of the flu.

Then on Wednesday they start collecting cells.  I have learned these last few days that my sister the Donor has a fear of needles.  That makes being a donor problematic.  I discovered this fact when she began to tell me about “butterfly needles”.  Well between the leukemia and my former life as a hospital architect extraordinaire, I am quite familiar with needles.  The needles she referred to are very small and have “wings”, sort of little handles.  Most of the nurses I see can insert one with the patient felling less pain than a figure prick.  Part 2 of the issue is that the needles use to harvest stem cells are much larger.  They have to be in so that the cells are not damaged during the harvest.  But as with everything so far the Center has a plan.  They have decided to install a central line.  This is a system similar to an IV.  It will be installed on her shoulder near the neck while she is sedated.  I had one of those after my emergency surgery.  It was a minor deal to me but I have learned to live with needles.

So we have some dinners planned. I have a list of things to pack and a small list of things to do.  That latter is the hardest part of me because it puts a real time line on things.  Exactly 12 days from when I type this I am to report for admission to the hospital and the first round of chemo.  I’m doing my best to gear up.  I refer to my emergency surgery stay in the hospital as Training Day.  And I know the game is going to be much tougher then the training. No doctor has pulled any punches on that one.
I found a child’s reward calendar on the interwebz.  I’ve set it up to make me eligible for rewards for doing things like eating and exercising.  In homage of the blog Pauline kept when her Dad was sick I made one reward a “Hug from Nurse Goodbody”. 

I hope the nurses don’t take offense. 

I hope there is a Nurse Goodbody.


Boone