Stem Cell Go Time

Wednesday morning at 8AM was the last time I had chemo and was due for the stem cells on Friday evening.  That left me three uneventful, but good days building up to the day.  Lots of visitors, work time, Skype, watching movies and walking filled those days. 
About 8PM on Friday I noticed a blood stain on my only tee shirt I had and it revelled that I had moved my Hickman line enough that I was bleeding out of my insertion hole.  No problem though, a lot of clean up, gauze, tape and the assertion that this would not hold up what was about to happen. 
8:30PM hit and in walked my bag of a second chance.   It looked like tomato juice after it had been sitting in ice for a while.  They hooked me up and 2 hours later lunch reared it's face for a second chance thru my mouth.  A nausea pill solved that and 4 hours later at 1AM on Saturday we were finished. 
I had a good sleep but woke up feeling like shit.  Started the morning off with a mellow bile puke, which moved into a fart presenting itself as a shit in my pants, and continued with that feeling the rest of the day.  Thank God for baby wipes. 
Today though, feeling like a champ.  Except my Hickman line is bleeding again, and they got a 5lb weight on it trying to get the blood to stop coming out.  Remember, my red blood cells, white blood cells and platelets were just poisoned and in the process of dying off and being replaced with Kraut blood.  Anyway, all good in the hood. 

Lisa and I going back and forth with Stick and Silly Chick Jen by I-Message.  Good times.

This Godsend showed up on Wednesday.  Lisa's sister Leslie is out to care for the kids for the next two weeks while Lisa cares for me.  I love you Leslie.

Boys have been coming by for a visit and playing candy crush. 

New me in a bag.

423ml containing pure 20 year old Arian Kraut blood.

Mano-pause

Chemo Dayze 4-6

The last three days have been pretty much the same.  Wake at 5AM, bake my veins with the Butocin until 8AM, then get some vitals, blood work, coffee, order breakfast, check the 'puter, go for a walk, eat, talk to the attending physician, talk to the nurses physician, walk, lift in room, get sleepy, stay away, have a visitor or two come by, and hopefully not talk about this, but share some bullshit going on in their world.  And that's been happening on the regulars.  Thank you all that are providing this.  As far as how I feel?  1 week down, 4 more to go.  Checking them boxes yo!  My head gets a little off track here and there.  No problem, Dr.s got a pill for it.  My stomach keeps uncontrollably hiccuping because of the chemo.  We got a pill for that too.  Not able to swallow?  Pill.  Is it tough to sleep with everything going on?  Here you go.

Rocky and Clay know how I feel in this hospital.  Won't you help?

I've got 48 hours to burn before my stem cells come in on a plane from Germany, stopping in NYC for a hot second and then touching down in Seattle by 10PM.  If dude carrying the freshly harvested bone marrow can get to my hospital room before midnight on Friday, I'll be getting my transplant then, otherwise Saturday.  If your reading this, and want to help out, then I ask this. Give my a movie to find on Hulu, Amazon Prime or Nexflix to watch that will make the time fly by.  Here's my list of favorite movies:  Marley and Me, The Town, The Fighter, Do the right thing, The Natural, Matrix, Shawshank Redemption, Friday, Colors, Green Mile, Big, Nemo, Boyz in the hood, CBT, Hustle and Flow, Taladega Nights, Mission Impossible, Bourne Identity, 300, St. Vincent, Blades of Fury.

As always, thank you for everything.   

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.  Sodium...in 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.

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...

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. 

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. 

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.  

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.

31 Staples and hard dates

I had two Dr.s visits yesterday, which ended up taking 5 hours to get thru.  This getting better shit is a full time job.  For my wife...she's the one carting my Oxy induced ass all over the city.
First stop was Dr. Johanson's spleen center.  After they called me around 1PM and said "I know you have an appointment at 3:30 but can you get here right away and we'll fit you in" I arrived there by 2PM and proceeded to wait til sometime after 3 to be seen, then finally some action hit around 3:30PM.  Efficiency.
Doc came in, asked how I was doing, went thru some motions on how he wrestled that "fucking monster" out of me and said I looked skinny.  We asked him how my liver looked, as they also did a biopsy on that.  The initial results that S.C.C.A. had gotten were scary for them.  Said it looked milky, and my Billirubin were highly elevated, whatever that means.  Doc said that my liver was one of the healthiest that he's ever seen.  The milky stuff, is from the Myelofibrosis venturing off, looking at other organs.  "Your livers fine, you got nothing to worry about."  Boom, checked that box.
Then his nurse came in and had me lay down, take my shirt off and started in on my 31 staples by my bellybutton.   Every snap, made a funny noise and then pinched the shit out of me.  I bit down on my teeth and didn't say anything til half way thru when I told Turbo that I needed a break and had to catch my breath.  She said the last guy she had in there cried like a baby when she took his staples out.  I said to her, "you know why he cried?  Cause he's a fucking pussy, now get back at it bitch."  Just kidding.  I was done, and I'm done going there.  Dr. Johanson's box is checked.

Then off to Cancer Care where I got another 3 viles of blood extracted from me before going upstairs to meet with Sonny and Dr. Becker.  Sonny comes in the room with Andrea, Dr. Beckers Physician Assistant.  I guess these guys coordinate and do pre-meetings with patients to try and get a bunch of questions out of the way so when Doc shows up, it's strictly business.  Andrea goes on to tell us that they'll get us hard dates for me to come in for 2 weeks of clinical testing, as well as a hard start date for Chemo.  Then she says that I'll come in for chemo, go home after and come back for my next fix.  Completely opposite of what we've ever heard.
Finally Dr. Becker comes in and is in a great mood and kinda has a personality for this visit.  She tells us about all the nightmare calls she dealt with when I was in the hospital at Swedish.  How those Dr.s wanted to transfer me out of there and to her, for her to care for after they just did the surgery's.  "You want my people to fix your mess, when they don't know the mess you caused?  I don't think so."  Then goes on to say how when I went Neutropenic, which means people were wearing masks around me, no flowers, no outside food, lock down shit, that the Dr. almost gave me this drug that would of fucked up my whole bone marrow transplant.  She was rolling her eyes for a lot of the chat on the care at Swedish, when she sent me there, AND I thought it was pretty good.
Finally she rolls thru my blood work.  Red blood cells, check.  Not gonna need a transfusion today.  White blood cells, check.  Their back and I need to get back on Jakfi until transplant.  Liver functions, check.  All look normal.  "Hey, does that mean I can have a beer again?"  "NO."
Then Becker and Sonny give us some hard dates.  September 8th we enroll in Chemo school.  Here they'll do all the testing on my heart, brain, liver, and other vitals to make sure all is a go and I live thru this treatment.  Then they'll teach Lisa how to care for me, the do's and don't at home and a bunch of other stuff.  We'll be there 4-5 hours a day for two weeks, until we get our diploma.  Then on September 25th, I get admitted to Poison Town.  Where in fact I WILL be admitted and staying in the hospital.  7 days of chemo starting on the 25th, then a day of rest on October 2nd, and new me gets dripped in on October 3rd with the bone marrow transplant.  They say that day is uneventful.  This life changing, life saving miracle shit just sits in a bag, looks like blood and drips into a port into me.  That's it.  No explosion, to ejaculation, no nothing.  Drip, drip, drip...
Then for 3 or so weeks I stay in the hospital on top of that, waiting for things to match, jump in and start working.  This is  what I'm scared about.  4 total weeks in a hospital?  R U Fucking Kidding Me?  That last 8 day stint almost destroyed me.  I learned that hospitals are not for healing that's for sure.  As soon as I got home from this spleen thing, I started healing but there, it was fighting thru it, being enabled, no sleep, comfort or happiness.  Just a 12 X 12 room of misery.  But Becker says I don't have a choice.  I'll be hooked up to drip lines, monitored, tested and watched and I got to do my time to pay for this Myelofibrosis crime.
Fuck me.

Pint 5

Cruised into S.C.C.A. yesterday afternoon expecting a "hows things going on" from Dr. Becker and Sonny.  Instead, got told to head to the fifth floor, lay down and it was time for another pint of blood.  This is my 5th blood transfusion since last Tuesday.  Since my bone marrow isn't making new red blood cells (myelofibrosis) and my spleens gone, they have to re-up me with some new new jew jew to my YO go when my levels get low.  2 hours later they dumped the blood pump and I was home.  Sonny did come up to the room and gave us a meeting before the meeting, which was helpful.  "Sonny, what do I do this next month while waiting for the transplant?"  "Heal, rest, your off booze, eat healthy, exercise, live your life like you would and don't do anything stupid to hurt yourself."
I can live with that.

Jail TIme

Wow, that was hell.  One minute I'm on a lake house with my bro's, eating and drinking, next thing I know, I get ripped open and have people waiting on me to fart.

 When you love what you do, and who you do it with, it's not called work.

Sunday, Monday and Tuesday was the C3 Olympics, meaning my summer sales meeting with the reps, where I got them everything that they were gonna need from me while being out on this full body makeover.

Hurry up and wait.

 Wednesday morning 10:30AM roll into Swedish Hospital, check in, and wait til 2ish to get hauled into another room to wait.  About 6:30PM they let me know i should get an epidural for the pain I'm about to have, that I'm gonna get a catheter and they will open me chest to belly button to take out what was in me.  I'm awake as their getting the catheter in, and can see them hauling in tons of stainless steel to rip the body open and hold it open.  I count backwards and boom, I'm out.  The last time I had eaten was Tuesday night around 10PM.  Over the next few days I cant piss, cause I got a tube in my hog that does it for me.  Can't shit, because my intestines are shut down from being handled, cant drink anything cause they want nothing in the bowels, can't get up because they opened me tip to tail.  From Wednesday til Saturday I was in intensive care where you have one nurse, plus a nurses assistant taking care of you and one other persons stuff for a 12 hour shift.  Monica, Vicky and this dude Greg were all time.  Vicky was a Alabama native, 60+, killer "fuck it" attitude.  She gave me back rubs, lot of drugs and my first naked body wash down.  Greg was a Seattle native, his wife works research where I'm going next at S.C.C.A. for the doctors that are working on my case and he was a graduate of O'Dea where Milo goes.  Funny the he was the one that got to pull the catheter from my wiener.  Sorry dude.  Monica was the spicy nurse that wasn't fucking around.  You were getting great care from her, that's it.  She insisted on excellence.  These three were so God damn kind, it blows me away.  I got freaking tears typing this.  To go from ripping around on a lake the day before to a total cripple is pretty humbling, and to be honest, I never expected it.  But these three killed it for me.  Thank you.

This is what a 13 lb spleen looks like, mine was 12 pounds.  There supposed to be 6 ounces.

Getting that shuffle on.

Off to regular care on Saturday, where the nurses have double the donkeys to take care of, so you might see them every hour.  Might.  I got 4 blood transfusions once I was here cause my red blood cell count was whacked, then a EKG for my heart cause it was fluttering like I had anxiety.  I went from the epidural to Morphine with cocktails of other shit.  I get 4 blood works done a day, 2 needles in the belly of blood thinner, plus a bunch of other shit.  Today I was supposed to get bone marrow pulled from my hip, which is super painful so I had taken a drug induced nap from 1-3PM yesterday, then didn't sleep a wink after.  To which time went by so freaking slow.  I swear to God, this is what jail feels like, or hell.  I was kind of an emotional mess once Lisa left to get Milo ready to go to Mt. Hood today.  Just felt like time was standing still and the pain train was here, but way worse than I expected.  This no sleeping thing and not being comfortable is absolute hell.  But...when it's all doom and gloom shit changes.  Doc Sanjay came in and said my white counts were up, and they weren't doing the bone marrow thing today.  Plus he ordered me a sleeping pill for tonight.  I took a shower, and Lisa trimmed my beard and hair.  I walked a shit load of laps here and met Tim,  a distance athlete who's heart valves exploded so he was dealing with that.  What started like shit, has turned out pretty good.  I might get to actually go home tomorrow.  Which will present it's own challenges.

Just a mere flesh wound.

But I think Lisa's up for it, as she's been up for everything.  She's done every one of the above nurses jobs for them, pointed out shit to the Doctors that they actually did, and has been an invaluable care giver to me.  She's slept on the floor or a crappy stool seat, just so she's here every night.  She's living the better or worse part of our vows and I'm sorry about that babe.  I really am.  This sucks, but we'll get thru this.

Dr. Lisa KNOWS what's up.

I promise.

Finally

As in we FINALLY have an official start date to this whole thing.  August 5th, 5AM Dr. SpleenBEgone will slice and dice his way thru my abdomen and yank my spleen out in its entirety.    Lisa thought my appointment was with a Dr. Joe Hansen, but after we couldn't find a doc in Seattle with that name, we went to Dr. Johansen's. 
Dr. Joe is 70 and has done over 50 splenectomy's with people with Myelofibrosis and all 50+ have survived.  On top of that interesting tid-bit, Dr. Joe said that all of the patients transplants took, which is a great thing.  There's research that shows that transplants take better in patients that are spleen-less in Seattle.  I only want to go thru this crap once, not twice. 
Yea I thought I'd be deep in the transplant right now, but I'm pretty grateful that things have mulled along as they have.  With this shit show not kicking off when I thought it would,  I've gotten ride a couple days of bikes at Stevens Pass, then break my elbow, get surgery, try ketamine, morphine, oxy's, get 6 screws and a plate put in, do occupational therapy 2X a week, go to all of my kids swim meats, go down to Hood a 3 times, snowboard once (don't tell Lisa), cook for 45 dudes deep in the woods at CAMPiTA with Griff, and now throw a summer sales meeting with all of our reps. 
I'll get this surgery the morning that all the reps are leaving to go back home, then have a month to recover, and we'll start all that other good stuff the beginning of September.  Right in time for the boys to be back in school, busy, and with them occupying their time thinking about what boys think about rather than their miserable ass Dad, being the boy in the bubble stuck at home yelling at them to clean the house. 

This is the stain my greasy head left on the check out table at Dr. Joe Hansons. 

Really?

Even though I'm getting my spleen removed, Doc has me continuing to take the $10G a month spleen shrinking drug.  Now at the highest dosage.   Odd, but ok. 
Also got a bunch of shots last week after the Spleen Be Gone news.  Got Meningococcal, Haemophilus Influenzae Type B and Pneumoccal Polysaccharide.  Horse needles entering my body thru the thigh, arm and ass.  Shit knocked the crap out of me too for a couple of days.  I guess since the fuel filter for the body is getting ousted, they want to get you hopped up on all kinds of gnarly vaccines. 

YOU'RE OUTTA HERE!

My spleen is, I mean.  Looks like $30G worth of spleen shrinking Jakfi couldn't get the bugger down to the required 22cm size.  It's still around 24.9cm's long.  So the new half assed timeline looks like this:  meet with Dr. Spleen next week, have Dr. Spleen remove the overgrown organ sometime in July, recover for a month or so, then get rolling on the bone marrow/stem cell transplant in August.  Shit... I just might be able to snowboard this summer!

Up Date

Last Saturday Mac and I rolled up the Skykomish to do a little yardwork at the cabin and maybe get my first and last bike ride and of the season in.  Saturday was awesome, we took a bunch of hot laps, hooked up with some friends and then got home and cut the lawn then weed whacked the lawn. The place looked pretty Chino.
Sunday we were up and at it early met up with the mayor of Skykomish Brian Schaefer and his group of dudes and ripped some more laps.  I was doing the smart thing when they went in for a beer at lunch and I said "yeah I'm just going to keep riding I'll have a beer when I'm done." 
The day was ending for Mac and I and we were rolling back to the car when we ran into one of his friends that doesn't mountain bike and we're going to do "one more run" with them, taking it easy getting down the hill.  20 feet off the chairlift going 5 miles an hour in the first turn my front tire washed out and I went down hard on the only place on my body that didn't have pads, my elbows.  For some fucked up reason, Sunday was the only day I've never worn them.  Ski patrol thought I just had a really bad hematoma, I thought the same thing so we packed up my shit from the cabin and cautiously went back to Seattle. 
Monday was a big day on the transplant timeline because we were going back to Seattle Cancer Care where I had an appointment with the infectious disease department to see if the toe fungus I have was going to hold up my bone marrow transplant.  Which it's not.  But what they really needed me to do is go to the emergency room and get my arm looked at.  Next thing I know they got me pumped up with ketamine and they're relocating my elbow into its socket and then scheduling me for surgery on Wednesday to put a plate and screws into my elbow apparently I had dislocated my elbow as well as breaking it pretty badly. 
Wednesday was supposed to be the meeting I was going to have with Dr. Becker about when we're actually going to do the transplant so that got rescheduled until the 23rd of this month.   Just a minor setback or a test run for the upcoming pain.

Sundays pain drive home from the mountain.  Thanks for the sling.

Swell bow

Pre drugs and ketamine

Post surgery, diloted, oxy and morphined up.

5 days after surgury the bandages came off.  Them puss buckets are trauma blisters called blebs.  Nasty.

 9 days post surgury

 Screwed

Keeping the spleen

For now that is.  We had the big consultation about who, what, why and how this transplant will go down with Dr. Becker last Wednesday.  She went in detail of the meeting we had on D-Day about the drugs I'll be taking, tests, mouth sores I'll be getting and other fun by products. 
She also ordered a Ultrasound to get an exact measure on my spleen to see if we keep it or cut it out.  She said "if it's 26cm or bigger, it's coming out, 25cm or smaller, we'll give it another month on the Jakafi drug to see if we can get it to 22cm or smaller before the start of this.  Last Friday I had the Ultrasound and the tech told me it was 25cm, to which I was stoked. 
Then got a call on Monday from Nurse Sonny who said it was actually 24.5cm.   So three more weeks on this drug that the price went from $9,700 a month to $10,200 a month.  $29,600 invested to keep a spleen?  Damn.  Still planning on a go day of June 1 though.  Tick tock, this shits counting down.