Monday, October 26, 2015


Well sort of.  I got out of the pen at 4:30PM, after serving 29 hard days of butt burning, mouth sores and a plethora of drugs.  My Neutrophil count was supposed to be in the 500 range so I can have a chance of fighting off infections.  Mine was around 330, but it was time to go.  Doc was sure my counts would spike any day.
Once we got home I had some serious work to do.  I had to build my pill case, and this is the assortment of meds they got me on right now, along with two daily shots and 3 home infusions.  It took over an hour to figure out what I had to take when.  Brutal.
Saturday morning we got up and off the SCCA we went for our DAILY blood draw and meeting with the team.  On top of that I got some platelets.  That took a good 4 hours of the day.  My Doc warned me of being on the outside.  "In the hospital you are pretty sedate for most of the day and when you walk, your walking on flat surfaces.   You will get extremely tired quickly back in the real world, so watch out."  Whatever dude, I was walking 2-3 miles a day, I'll be fine.  From the hospital we went to Milo's soccer game where all the kids were unusually friendly to seeing me on the sidelines.  Then after the game the whole team bowed at us and thanked us for coming.  No idea what that meant until Milo said in the car ride home:  "Dad did you notice we were all wearing pink socks?"  Yea?  "Well coach heard that you may be at the game so he went out and spent over a $100 on pink socks in honor of you."  Wow, didn't think I'd get emotional on a ride home from a soccer game, but I was floored.

This guy was a little aloof to me at first.  I guess my pussy was playing hard to get.
From the soccer game we went to Macs playoff football game.  It was later in the day and I had a sweatshirt, down coat and a down blanket on but shook like crazy from the cold.  Ended up going up to the truck and watched from a distance.  When we got home, I could barely get out the truck and felt like someone whacked me with a bat a dozen times. 
Sunday we got up and had to be at SCCA at 9AM for a blood draw, then to meet with the team and then to get platelets and blood.  7 hours later I walked out of Seattle Cancer Care Alliance feeling like I put in a full day of work.  As I was worked. 

Luckily when I got home, there was an issue of Snowboard Colorado waiting for me.  I flipped thru and found this.  I felt like I had just pushed the Morphine button a couple times.
Monday we were back at SCCA at 8:15AM, did blood work and met with Yellow Team to update them on whats going on with me since going home.  "Well my back looks like someone blasted me with a shotgun doc."  This may be the beginning stages of GVHD or not, so they gave me some topical steroids to put on to relieve the burning and itching.  Next up on the list was the fact that my last three bowel movements looked like I was pissing out a Cabernet wine.  Blood in the piss I got.  It may be an infection (ya think?) or it may be a reaction to you taking pill form drugs now.  We'll keep our eye on that too.  They increased some meds, pulled away others an said that my Neutrophils were in the 700+ range.  Real good. 

This lady was the key to keeping the family from going crazy during the hospital stay.  3 weeks she gave us.  Unreal. 
Funny that since I got out, people assume this shit show is over.  "I got extra tickets to the Sounders, want to go?"  "Hey man, lets go out to lunch, I'll buy."  I wish, but being out means that I get to sleep at home.  I'm under the strict supervision of the team on getting thru this next stage.  What would get accomplished in the hospital from 6AM til 1AM now has to happen during the day.  But I'm not not complaining in the least.  I'm in the comfort of my home, Lisa's on point with what needs to happen with me, the kids are finally realizing that "wow, Dads kinda fucked up" and helping any way they can, and this is a million times better to being in the pen.  It's good to be free.  Kinda.

Wednesday, October 21, 2015

Friday the 23rd!

It's been a bit since and update.  So instead of a book, here's the Cliff Notes version.  Had birthday last Thursday while deep into the Mucusitus.  At this point my lower lip had a full blister on it that had popped the day before.  The skin flap was still on and the Dr.s said let it be, so it can fall off by itself.  My 12 year old son Mac came in to visit me and was horrified how disfigured I was.  He was pretty traumatized over the visit for sure.
Saturday night I wake up around 2AM because something was tickling the back of my throat.  It felt like I had a goldfish in my mouth and I was holding it's head in my teeth and the tail was going back and forth hitting the back of my mouth.  But the tail was half of my lower lip that peeled away and was running rouge in the back of my throat.  I hit the morphine button a couple of times, grabbed the spit suction device and gnawed the rest of that fucker from my lip.  Then realized that my new lip was raw as shit and I was completely fucked.  Another press of the button and some how my lip toughed up and acclimated to being on its own.  I'm starting to believe there could be a God.
Sunday was a good day, up until the night time when this shit decided to go mouth to ass on me and I was back on the toilet pissing out of my butt.  Nothing solid, it just sounded like I was dumping a bucket of water into the toilet.
Monday this bloomed into me waking up at 8AM and going into the bathroom over 28 times that day.  I went thru two packs of industrial wet wipes.  Doctors thought I may have an infection called C-Diff which is something that is commonly found in hospitals because everyone is on antibiotics.  Anyone that came into my room had to robe and glove up while in the room, then scrub themselves so it doesn't get passed along.  This carried into Tuesday night when they said I didn't have it and they were able to get me on some Imodium to fix the leak in my damn.  Things instantly slowed down and I started feeling good, but as always, it was too good to be true.  I finished the last of my pills, had a sense of accomplishment for doing it and started to recline my bed when I got a tap on my shoulder.  I sat up, looked around the room and saw the bucket.  As I got up and was rushing too it, out it came, this time from my mouth.  I got the bucket in time but it was filled with all types of hospital goods and ended up puking all over it.
But TODAY, is the best day of my 26 day stay so far, because all that crap is behind me.  My white blood cell count doubled from yesterdays numbers and my Neutrophil count grew five fold.  Which means things are happening and I'm on the come up.  Because of this, my mouth and ass both feel soothed and comfortable.  I'm off the narcotics, and have been trying to finally get some very basic food down my gullet.  Lisa and I had a clinic from discharge services today as well as a class on how to use home infusion and work the pumps, lines and stuff that we will use to inject in me at home vs. sitting for hours on end at Seattle Cancer Care Alliance.  We are planning on getting the hell out of here on Friday, 4 weeks from when I arrived here.  To say that today was the best day of my stay here so far is an understatement.

I can't wait to get home and get this back in my life.  4 weeks away from your wife and kids lives, is way too long.
 Butt I got to stay away from this.  No poo poo picking up for me.  Dr.s orders hon.

I'm cleared for mellow head rubs though.  Gotta wash my hands right after, but I can get back to beating the crap out of these two.  Tell me you don't want to torture this guy?
Speaking of torture, my God damn neighbor Pat just fully fucked me.  This tree in the front yard is my nemesis.  I trim it, it grows like someones fertilizing it.  I always end up climbing this thing, with the gas hedge trimmer, swinging from left to right over my head in attempt to get it under control.   Pat and Jenn across the street always come out to watch the show.  They want to see if I cut a power cord, a finger off or fall out of the tree.  But noooooo, not this year.  Pat knew this would be first on my to do list of things I'm not allowed to do so he rolled over and tamed the beast.  Neighbors of the year, yup.
I'm going home, but not out of the woods.  Got plenty more hills to climb, plenty more issues to deal with, and lots of time gonna be spent with my team and Seattle Cancer Care, but to know that I'm 30% done with this "journey," it feels pretty good. 

Thursday, October 15, 2015

Happy 49th?

I certainly hope so.  Seeing how for my 48th year in this world I spent 26 weeks being hurt, over 60 visits to the doctors office, 12 weeks in Occupational Therapy, 30 days sleeping at the hospital, broke 4 ribs, scapula, elbow that required 6 screws and a plate, got a 12 pound spleen removed, 6 days of chemo, one stem cell transplant, one hemorrhoid and the worst part...only one day of riding pow. Not expecting an exciting 49th year, just one a tad better than the 48th. 

It's pretty sad that these are my most commented media, EVER.
My Mucusitus is pretty raging right now.  Still can't swallow, drink or eat and I'm still using a topical numbing lotion on my gums and butt.  I feel like that Blink 182 album cover twice a day as I yank up that rubber glove to massage cream on the button.  Who would of thought...
Now the good news.  My white blood cell count has shown improvement over the last 3 days and today, my neutrophils finally registered.  Doc says if things keep improving the way their going now, I may see my own bed at the end of the week.  Meaning my counts need to continue to rise, my mouth needs to get under control, I need to be able to eat, drink and take pills orally, as well as other things.  Still, pretty stoked to hear that.
The nurses here all signed me a card and came into the room to sing me happy birthday.  Thank you guys for all the birthday wishes on FB, IG, IM, and email. Not the raddest birthday by any means, but it kinda goes with how 48 went.

I figured I need to change some shit up in my life to ensure 49 was better that 48.  So I started off by unfollowing people I could give two shits about.  Shaun, Leah from Married To the Mob and Bozung all got the cut today.
 I was restricted to my side of the building today, so this is what 45 minutes of walking around my floor looks like.
 I have been DILIGENT with my mouth care.  Rinsing with saline solution 10X a day, using Lidocaine on my gums every 30 minutes, sucking out all mucus with a suction pump and using Lanolin on my lips to protect them.  And this is how they pay me back.  That's my lower lip completely peeled away from, my lower lip.  Happy fucking birthday.

Tuesday, October 13, 2015

The good times are killing me

Day 19 in this joint and day 10 post transplant.  When I got here I pulled out the calender and told the Doc that I like to know the ending of movie before I watch it, so tell me when the shit days are gonna be.  "October 4th - 14th your gonna be deep in it."  And the countdown was on.
Friday the 9th hit and the Mucasitis was only in my butt hole.  Then Saturday my inside of my mouth started to turn white. Taking my 15 pills in the morning was taking me almost 2 hours to choke down.  Eating was fucked.  Pudding and Jello were not my friends.
Sunday proved that it was not a "fun day." But Monday was a game changer.  They pulled me off food, and now I have a bag of nutrition dripping into me.  All my pills go in thru a drip.  They gave me a mouth numbing cream similar to the Bob's Butt Numbing Creme that I have been using to put of the flames on my ring of fire.  We hooked up one of those dentist spit suction devices so when my mouths full of thick mucus flem, I can just suck it out.  Sleeping pills only come in a pill form, so they hit me with 50mg of Benadryl and it was lights out.  And the special reach around of all this goodness was a morphine drip.  Every 6 minutes I'm allowed to press the button and give myself 1mg of morphine.   That would be 10 an hour, if I so chose too.  Excuse me, I need to push a button.  On top of all of that, the little hair I do have is falling out.  I go take a leak and look down, it reminds me of when I was 12.  I scratch my head, there's a smooth shiny spot amongst the stubble. 
But the cherry on top to all of this, was Leslie agreed to stay out here another week to help the kids, Lisa and myself out with all of this.
Now I know this all reads like every things great, but it sucks right now.  This is the crap time.  I've got lots of band aids for wounds that need stitches.  But so far it's keeping it all together.
Happy birthdays to two awesome humans, Benny and Emmet.  For your presents, I'm gonna push the button 10 times this hour.  Your welcome.

WeGnar, mid win whats up Facetime this Saturday.
For the first time I got stopped on my route last night.  "John, you're not allowed to leave the floor."  We'll see about that.
See all that whiteness?  That's not cocaine, that's pain.
My Wizard Stick is growing.
This is what I'm eating these days.
Say hello to my friend Morty.
Spit suction receptor thing.  Gonna save it as a souvenir. 
Mouth rinse, mouth numbing and lip protection every 30 minutes or so.

Sunday, October 11, 2015

The Larry Hirsch Story

Two links for ya.  If interested.  This 52 year old man, Larry Hirsch, went thru the whole Myelofibrosis Stem Cell transplant like I'm doing.   He tells his account of the journey here.   ABC 15 just did a news story on him on him as well. 

Saturday, October 10, 2015

Still Here

Day 4-5 after stem cell infusion is when shits supposed to go down hill.  I hit day 6 3/4 and was still feeling like a champ.  Only things that were bothering me was my burning butt hole, that they make be put a numbing agent on and my beard started to fall out.  I was scratching my face and looked at my fingers, which reminded me of my palms in high school.  Off came the beard.
The other thing was I went 3 days with out sleeping.  Tried everything and anything and got nothing.  I would lay in the bed, looking at the ceiling til 6AM and then maybe go out for a hour or so until there was a nurse shift change and my new care giver would wake me to introduce herself, as well as take vitals.  Doc Hanson suggested we get on some Oxy for the throbbing pain in the ass, as well as the rough mouth that was starting to happen.  Then a hour or so later, they'd stack an Ambian on top of it.  The first night they did that, I made it to 8AM in the morning the next day.  That was Thursday.  We repeated that cocktail on Friday and I got maybe 4 hours.  Then last night we doubled down on the Ambian, and I still got about 4 hours.
Yesterday I had a few visitors.  It was awesome.  Time was flying.  I had to get a plasma infusion as well as a red blood cell infusion as my counts are starting to tank.  Which there supposed to do.  That's what chemo does.  Kills shit.  Kayse and I were in full chat mode when I said to her "time to go."  I had gotten the tap on the shoulder and knew the bowel movement I was about to perform was gonna rip me open.  Thank God for the game 2048.  That's my shit game.  I start sliding those things up and down, the cubes are chiming like crazy and I'm groaning like a gorilla.  Nurses must of been outside my room laughing their asses off.
Post poop, I literally felt like shit.  I got my 3rd of 4 apres stem cell anti GVHD shots which just kicked me in the dick.  In bed I went and stayed there the rest of the day.  On top of that, my mouth started to act up.  I had a few blisters in there and the whole pallet feels like I burnt my mouth by drinking too hot of coffee.  As well as the swallowing of spit is now a challenge.  As I thought I was getting away with murder by bucking the trend of when you get the mouth sores, it slapped me upside the head and let me know I'm like everyone else.
On top of feeling like shit, they "informed me" that they were moving my room.  I had a negative air room that certain people need (I don't) but was in it.  We told em no problem, until Lisa went to look at my new space.  It had a view of concrete wall and was a tiny ass box.  My wife was not having it.  "Hell no you don't.  Environment is a key part of healing, and that is not a healing environment."  So the business manager of the floor came over to explain the politics of how beds work here.  Seattle Cancer Care owns some of the beds, UW owns the others and ICU owns some as well.  The box they wanted to put me in was part of whatever faction I'm part of, but there were rooms open with a view.  Business lady kept going on to Lisa about how they can't do it because of billing, this that and the other thing.  Finally I jumped in "listen lady, you can do anything you want.  Your job is policy and I respect that, but your also responsible for the patients well being.  And at the stage I'm at with this "journey" you need to forget about policy and put a human element to this decision.  Ya dig?"  She walked away, came back and said "we have a room with a view for you.  Your billing may be a little odd, but so be it."  Case closed.
I got about 4 or 5 hours sleep last night, woke up feeling better than I did yesterday afternoon, my mouth still hurt, but I was able to choke down my pills, eggs, oatmeal and a smoothie.  Then got to stretch my legs for a mile stroll thru the halls.
I'm on Day 7 out of 100, and hopefully have less than 3 weeks left in here before I can go home.

Before shave.  What you can't see is beard hair covering my tongue.  Nasty.
 Post shave.
 Thursday 3PM the door knocked and in came this dude.  He took a bus from school and we hung out for a couple of hours.  Watched the 686 movie together and Kevin Backstroms part from BNYD X MDLS.  Which is some next level shredding.  Click the link and go to minute 10 to have your mind melted.
 Frank Martin came in from Skykomish.  Gave me a town update as well as this LuLu Lemon hoodie.  My ass looks so insane in this thing.   Thanks Frank.
 My ex-friend Mike Rosen sent me out a fun ass care package before my infusion with German Stem Cells that I just got.  He no longer likes me because of that Jew vs. German bullshit.  I wanna go to therapy with him to work it out, but we'll see.  Mashooginah!
 This is my 1/2 mile route thru the hospital.  Not really to scale but whatever.  It's a half mile. 

Wednesday, October 7, 2015

Engraftment Time

T-Sabs asked me "so how long did your Dr. have to go to Harvard for in order to figure out to put a 5lb weight on your chest to try and clot your Hickman?"  Pretty funny when you think about it.

 Lonis surprise stopped in on his way back home to Burlington, looked at the 5 pounder on my chest and said "ya know?"  Thanks Loni.
 My Hickman Line finally clotted up on Sunday night and Monday morning I woke up feeling pretty all time.  Up, first coffee since Friday, pills went down, ate a good breakfast and then Lisa and I walked for 50 minutes and got in 2 miles in the hallway.  Got some of this and that done and then watch the Seahawk Lions game.  Did another mile at halftime and it was time to lay down and lay awake looking at the ceiling for the next 8 hours.  Maybe an hour sleep.
Tuesday was on the same tip as Monday, killer day and my time was filled with visitors.  Logic, Jess, Pile Kyle and Tonto all killed enormous amounts of the day providing a very large smile.  Again I laid down, and looked at the ceiling for 8 hours.
Today is as good as yesterday.  They say today is day 4 of new me, when it's actually day 4 23/24th.  You see the day your stem cells are infused is day 0.  2 days from infusion is day 1 and so on.  The countdown is a 100 day countdown that gauges where your at, provides certain milestones to hit, allows your red/white/platelet counts to go from zero to registering and most importantly allows my new immune system to come into my deserted town and safely inhabit it as well as take it over and make me it's BITCH.
The amount of pills I take is staggering.  They have me on anti GVHD and immune suppressants up the ass so new immune system doesn't come into me and say "hey, this fuck tard isn't German, he's a God damn dumb Pollack.  I'm gonna gas his ass."  These drugs are kinda like booze.  It relaxes the immune system enough to trick it into thinking that the Pollack is actually a good guy and this superior immune system should take me under the wing and make me little buddy.
Day 5-7 though is when the shit show is supposed to start.  You mucus layers are affected by the chemo and the GVHD medicines so you get gnarly mouth sores, can't eat, swallow or spit, you gut is rotten and your ass is now a liquid dispenser.
My mouths showing nothing yet, guts been OK, but my ass.  Man, it feels like I spent the last week at the Wing Dome eating extra hot wings consistently and as Social Distortion says, "I got a burning ring of fire!"  So much so that it's one of the things keeping me awake at night.  Pulsing, puckering, never giving up and always just a...pain in the ass.
Dr. says I'm doing great though.  That yea I may have painful bum, but at this point my butt should be a liquid fountain, and I should be showing mouth sores.  The floor docs changed and Dr. Egan who's been killing it for me for the last two weeks introduced me to my new Doc, Dr. John Hansen as "the ideal patient."
And that's a first that I've ever been described as Ideal anything.  So I'll take it.
I don't want to sound like a broken record, but thank you everyone that has sent a note, Skype, ran the Space Needle, Facetime, email, phone call, message, sent a card and visited me while in the hospital.  It has helped enormously with dealing with being in prison for a while.  So much so that I have a pleasant memory of the last 13 days in here.  XO

Sunrise view from my room.  Not bad eh?
Sunset view of the houseboats on Lake Union and the I5 bridge.  Just get cancer and you can have this view.  Actually don't.
THIS Pendleton showed up yesterday from KB Sales.  My room looks less like a hospital room and looking more like a cabin.  I always wanted one, but the JewPolish in me wouldn't buy one.   I wonder if new GermanYO would spring for it?
 Julie Tontini continuing on with witty sayings and motivating pictures. 
 Morning pills.   Combo that with the 4 bags of drips and there's a lot of commotion going on inside of me.

Sunday, October 4, 2015

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.

Thursday, October 1, 2015

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.