Wednesday, August 19, 2015

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.

Friday, August 14, 2015

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.

Monday, August 10, 2015

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.