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.