Sunday, September 27, 2015

Two and Three

Two more days in the books, two more treatments.  Saturday afternoon was my second installment of Cy toxin and then Sunday morning at 5AM my cocktail that takes three hours to be consumed was delivered, Butosin.  So far the only side effects of this poisoning are:  burping continuously, watery eyes, hard swallowing and a light headiness that feels like, light headiness.  Plus it might be killing off my marrow and immune system, but I can't feel that.  Yet.
I've been walking my ass off so much around here that they want to throw a Lojack on me so they can track me down for more pills, tests, blood draws, a couple of blood transfusions, sodium and what not. 38 hours I've gained 10lbs.  From 184 - 194 over night.  Full cankles too.  I'm so swoll that if I stood next to Jody High Roller that fat fuck would look cut.
My days have been filled with nurses and Dr.s doing things to me.  Walking down corridors they say I'm not allowed to go too, so I can get some laps in.  Make shift prison workouts where I do push ups on the chairs, cause they don't want me to touch the floor. Standing squats and my rehab bands that I still had.  Then I get on the Greg Lammond spin bike from 2005 and give that a whirl.  I know this "warrior" in me will go away soon.  I see it all day as I walk by the doors, men and women bed ridden.  I can almost hear them mumbling in the drug induced slumbers "fucking newb, wait a week kid, you'll be just like us."
Shits kinda real.  Dude down the row from me died yesterday.  Just when I thought the Anti Pussy Pills were working, that goes and happens and well, tears you up.
Anyway a quick update, I'm hanging in there while here in hospital prison.

I got some visitors.  Lisa has been at my side daily, and today brought Milo by.  Mac was too sick from downing a sub, then riding 6 spinning fair rides to come.  Shit bag Sam came by as well for a good 10min, until the occupational therapist came in and then he bailed.  Tonto made a late night appearance as well.  All lighted up my day.  But my first visit came from Gums and TJ on their way to the UW football game.  Gums had his backpack full of cocktail concoction things and thought it would be appropriate to make a quick one in the ICU / Transplant ward of UW Hospital of Medicine.  Yea.
My day 2's cocktails.

Tonto Facetime'd me Mac's 4th quarter football game. 
Skyping with my parents is always interesting.  Specially since I have to call them on the phone to talk to them, while they watch me talk on the screen.   Bob's putting my old haircut mold on Diane, btw.
  Nurse Erica was so on point at 5am giving me the new new.
Happy wife, happy life.  I don't know if she's happy with this situation but with her next to me at the hospital, life's a lot better.  I should probably smile.  There's a lot to be thankful for.
Call me a pill billy taking a couple cups of these a day.
How rad is this?  Ballard Pat was the surprise visitor later this evening, when he rolled up to the 8th floor just trying to drop off a card and gift.  Nurses brought him down the hall and he joined Tonto and I for much talk about everything and anything.  Then handed me a bag with a space chick book to read, a nicely hand written card and this custom ass "Brave Warrior" hat.  Thanks for the night cap Pat.

Friday, September 25, 2015

Chemo Day One

Well the day finally arrived and I got to admit, it was a tough one to wake up too this morning.   For some reason (Marinol) I slept soundly thru the night, but when the alarm clock rang, I DID NOT want this day to happen.  But we had no choice so off we went to the University of Washington where I'll spend the next month or so at.  Arrival time was 8:30AM so we showed up promptly at 9AM. 
Got to my spacious room on the top floor that overlooks Lake Washington and the Husky football field.  I can't wait til tomorrows game searching thru all the tailgaters to try and see Sam, Rowland and Gumby whooping it up. I'm gonna sit in front of the window, naked, spreading my butt cheeks at the crowd for a while.  Cause I'll be on drugs.  And that's an acceptable thing to do on drugs.  At least it seems that way as I write this on drugs...
They hooked my Hickman line up with fluids and pumped me full of hydration for 3 hours or so before it was time for the poison.  When Brad my nurse was hooking it up to my line, I had this Neo moment from the Matrix where he had the choice of what pill to take: 
"You take the blue pill, the story ends. You wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in wonderland, and I show you how deep the rabbit hole goes."
Morpheus, to Neo 
But there's no turning back for me.  I'm all in.  Down the rabbit hole I'm going.   Red pill it is.  GULP.
Not much happened either with it.  I felt a little light headed and had some mouth sensation but that left quickly once I got back on a spin bike and pedaled my ass off for a half hour.  What I need these guys to give me is anti pussy medicine.   This whole thing has been hitting me pretty hard lately and all the emotions that I like to bury deep in the closet have been coming out and showing themselves with me throwing out the random guy cry.  Like here on the bike, I'm pedaling and crying for no reason.  Well there might be a reason.  I think.
Tomorrows another day of this Cytoxin and I guess the chemo will start to show itself in me soon.  I've been told how worse its gonna get before it gets better and I'm not really that pumped on it.  But things like this adorn my room as Lisa brought photos of the kids, cats, family and cards that people have written me and that puts a smile on my face. 
Thanks for all the well wishes and stuff, it really means a lot.  If I could ask one thing though, it would be to knock off the journey, your a warrior, your so brave comments.  Brave and warrior?  Come on, how brave and warrior like is it to do what you need to selfishly do to see your kids grow up and live their life's?  Don't get me started on the journey bullshit either.  This is a trip to the town dump, where you fall off the truck into the shit pile, break your legs, and then the dump closes for the weekend and you have to claw your way out on your hands and knees to make to the road only to get picked up by a meth head that steals your wallet and rapes your mouth before dropping you off in town.  Journey my ass.  This is getting fucked over.  But someones got to do it and I guess it's better me than you.  Your welcome Sparky, Tony and Mike D.  If I didn't get this one of your clowns would of.  Feel good knowing that your free and clear of this shit courtesy of me.  Now Griff, with your luck...

Wednesday, September 23, 2015

It's on like Don Key Kong

Well week three of the two week testing is in the bag.  Monday was a mellow 9 viles of blood work then a 2.5 hour meeting with my transplant Dr. and the head nurse to sign the final "its a go" papers. Meaning that we are checking into the hospital on Friday and starting chemo.  The meeting had a different tone than last weeks vibe that this whole shit show was going to be mellower than we thought.  The severity of what is going to go down was gone thru in depth.  15% chance of dying, 60% chance of getting graft vs. host, this percent of getting this, that percent of getting that...on an on an on.  It kind of threw me for a loop.  I asked where my disease falls in the spectrum of cancers and Dr. Georges said its in the mid way zone.  That the scarring of the marrow from the Myelofibosis ups the consequences because it complicates things a little more.
BUT, he did say that we timed this whole thing perfectly.  That where we are with the disease and how far it's progressed in me is the "perfect" time to move forward with fixing the problem.  "You've pushed this thing as far as possible without really having any symptoms of the Myelofibrosis, and for the most part have been able to live a normal life."  Uh really?  Maybe I'll give him a link to this well written blog so he can see how few symptoms I've had.
Health wise though, I passed with flying colors.  Except for the mellow blood clot I got going in my stomach from the spleen surgery that they'll rectify by doubling down my dose of blood thinner shots that Lisa gives me once a day to now two times a day.  Fun.
I had to ask him the what if question.  "Doc, what IF I said fuck it?  I don't want to go thru all of this.  That I just want to let this play out, what's your prediction?"  He said that seeing how we ran this as far as possible without having to deal with many of the symptoms of the disease, that the disease would begin to showing its ugly face.  With the spleen out, my liver would start to be effected and begin to shut down.  I'd need multiple blood transfusions.  Blood clots would be common.  My kidneys would be screwed.  We'd still have to be on a shit ton of drugs, immune suppressants,  blood thinners, etc, etc, etc.  My quality of life would drastically go down and that I'd maybe last 3-5 years.  So that ended that little pipe dream and back to reality, which means back to the pain train.
Tuesday we did a food safety class, as well as another run thru with a transplant nurse on the transplant.  This confirmed the Monday meetings vibe that things are going to be not so fun for a while.
Today I got to visit my ole buddy Fentanyl because they installed a Hickman line into me.  The Hickman is a silicone line with two ports that is inserted into my chest and hooked into an artery so they can easily draw blood for testing, give me blood, chemo, stem cells and of course...lots of drugs. 
On one hand I'm happy that all this jerking off to the main event is over, but I got to admit, I've been having some serious sit down and cry moments thinking about whats coming up and how it's going to fuck with Lisa and the kids.
 Pity party aside, one more visit tomorrow back to Cancer Care to get taught how to care for my Hickman and then Friday morning, 8AM it's on like Donkey Kong.

 A freshly implanted Hickman Line.  Yes I'm a skinny pussy.  Commence the heckle. 
Thank God for this chick.  She has been about as awesome as someone could be.  People at SCCA think we're drunk when we show up because we've been coping with this shitty situation by laughing our asses off together every day we go there.  Whether we want to or not.  It's been a nice distraction from reality.  I hope we keep it going.
Here's a liter of metal water that I had to drink so they could then do a CT scan of my stomache and find the blood clot.  Tasty.
My buddy Tony and his lovely wife sent me a box of goods to pass the time at the hospital.  I can't wait to bust this bad boy out and give it a full pull.
That was the last time I'll be able to do this with our pussy's, seeing how cats like to roll in shit, lick shit, dig in shit and what not.  Luckily we don't have to get rid of them.
With all the drugs these guys have been pumping me with, something was bound to...bind. 

Friday, September 18, 2015

Chemo School weak too

To sum up this weeks 20 hours worth of visits at Seattle Cancer Care would be:  7 viles of blood given, stupid ass voluntary questionnaire done, radio active additive to my blood to see how my left ventricle works, meetings with the nutritionist, Chaplin, Dr. George Georges, pharmacist, swab of the nose, swab of the butt hole, bone marrow core sample from my hip bone, prescription for Marinol (synthetic weed), another prescription for Marinol cause the first one made me high as a kite and then the general nod in the direction from my Yellow Team Dr. and Head Nurse that this whole shit show is a go next Friday as I'm checking out healthy enough to handle all the crap that's gonna go thru me.

View from my bed post bone marrow sample while on Fentanyl.  Mmmmmm.  This photo obviously meant something to me while I was on drugs. I guess that's why it's called DOPE.

The one encouraging thing out of this whole week was meeting 28 year old Billy from Alaska.  I saw this kid walking in and out of appointments on Tuesday.  He was bald had that tint to his skin that tipped me off that he had been thru chemo and what not.  I haven't really figured out how to roll up to someone at Cancer Care and throw out the "so what do you have?"  But I was curious, cause this kid was young and he was one of the very few people walking thru that place with a smile on his face, after the fact.  Later that day Lisa and I were in the elevator going to another appointment and I was holding the transplant Bible that they give you and he was in the elevator.  He says, "you got a transplant coming up huh?"  "Yup"  "Well don't worry about it, I'm 30 days out of mine and I can tell you that going to all these appointments and classes are more painful than the chemo and transplant itself.  Just keep a good attitude and you'll do fine."  The elevator door opens up, we say "thank you" and walk out, then look at each other with tears running down both our faces.  Totally blown away.  Later in the week we run into him again and he tells us he had AML, which is Acute Myloid Leukemia, which is what my Myelofibrosis manifests into down the road if we don't handle business now.  He had the 6 days of chemo, then transplant and the dude honestly looked amazing for being 30 days out.

Pretty hopeful and anxious to get rolling at this point. 

Thursday, September 10, 2015

Chemo School day 2-3

Welcome to my new office on the 6th floor of Seattle Cancer Care, located in the waiting room of the Blood & Marrow Transplant Clinic.  Here's where I roll in and out of meetings, check ups, physicals, mentals and dentals.  
Yesterday we started off with an x-ray of my mouth.  Then to meet our Social Worker Lindsey.  Lins was more like a psychologist as she spent an hour asking us questions about how we're feeling, if we're looking for resources, how we're adjusting and crap like that.  I ended up scoring a 6 out of a 100 on her test, which ment I was pretty adjusted to the shit show that's going on and I wouldn't have to meet with her anymore to discuss my "feelings."  The 6 points that I did end up getting were from the question of:  "what do you think about yourself when you look in the mirror?"  "Uh disgusted as I've withered away to a 177 pounder because of this shit."    Oh...ok.  "And John, how do handle your feelings when your sad about your situation?"  "Lindsey, I bury those thoughts so far in the closet and close the door, that I never have to worry about them ever coming out."  "Uh...yea...well good luck with the transplant, it was nice meeting you two."
Then off to meet Dr. Marcus and my yellow team nurse Cindy who went thru one more time, step by step all the medications, complications, sicknesses, and crap that could, may and hopefully won't go down thru this treatment.  As well as me signing my life away to consenting to go thru with everything and allowing myself to be used in as many studies and clinics while I'm in treatment to further the progression in looking for a cure for this stuff.   "Listen, I don't give a crap what you do to me while I'm in the hospital trying to get better here.  You need to get samples, poke holes, do this or that, I'm all for it.  BUT as soon as I'm out of here, I'M OUT OF HERE.  I am not coming back to this place. You dig?"  They dug.
Today was a breeze.  I met with the dentist and got a hour long exam of my dental work.  Which all checked out perfect as we have killer dental insurance and I see my dentist twice a year.  Apparently with the strong chemo that I'm getting, dude said that I should plan on having mouth sores for around three weeks post chemo.  They should get kinda gnarly and I'll have to get fed thru liquid for a bit as well as take pain meds for it.  Makes flossing sound fun at this point. 
Then off to the pulmonary testing where Janet put me in this fish tank and made me hyper ventilate for 45 minutes testing my lungs and their capacity.  Bingo, scored a 100 out of 100 here and my lungs, teeth, heart and head are all cleared to go.
Testing resumes next Monday.  I have tomorrow off.  

Wednesday, September 9, 2015

Chemo School Day 1

Yesterday was day one in this "journey" as everyone but me calls it.  Really, getting chemo, stem cell transplant, sickness and all that shit is a journey?  I'd call that getting fucked.
Regardless, Lisa and I rolled into Seattle Cancer Care at 11AM, I checked in and got my packet to fill out about my health, prior surgery's, family history and all that other crap.  Then I checked into the blood draw and waited a bit with a bunch of living dead to get a gallon drained from my arm.  The nurse that drained me of blood informed me that she gave stem cells/bone marrow to a 4 year old 10 years ago.  She had to have the marrow taken from her hip bone too.  Pretty painful, super admirable and the kid is 14 now. 
12 viles of blood were taken.  Two for for my HLA typing, which is the 10 markers they need to match me up with the 18 year old German kid that's agree'd to give me his stem cells so I can live.  This is the final match up to make sure that our puzzles fit so he can go forward and donate his stem cells.  Other viles were my normal tests, HIV testing, amongst other things. 
From there we went up to the 6th floor and was welcomed to the "Yellow Team."  The Yellow Team is my new care givers for the next 100 days or so.  Dr. Beckers team hands me off to this transplant team and they now are the ones responsible for every aspect of my care until I get out of the danger zone 100 days post transplant.  It was sort of a meet and greet with who does what and what to do. 
Then I had a physical with one of my Yellow Team Doctors.  There was a good question and answer session that went down between Lisa, myself and him.  Things that I remember from this would be that 60% of transplants that go down from unrelated donors get graft vs. host disease.  Skin rashes, stomach cramps and vomiting are things I can look forward too if I fall in that 60%.  He was pretty non nonchalant about the whole procedure and kinda minimized our fears while talking to him.  Which could be a good thing, or bad.  Who knows. 
5 hours later we were gone, home for a Pagliacci pizza and a couple episodes of Netflix's Pablo Escobar resting up and getting ready for todays meetings which include signing all sorts of consents to be part of clinical trials as well as getting my EKG heart check up.
What a fun journey this is.