Sunday, November 29, 2015

Week 5

A pretty awesome week in the books.   Still got this itching thing going where I try and scratch my skin off to the bone, but it's not that bad in scheme of things.  During our Monday "team meeting" with my Doctor, PA and Nurse I was advised and told NOT to go to the cabin as I had just confessed to them how awesome it was to go feel normal for 16 hours.  To which they said that 60 minutes away from SCCA is too far.  Eh...I'm kinda not really backing that advice so as a grown man I told them thank you for the advice, but I will be going there, not a lot, but when I feel right and it's right, I'm there..  The risk is worth the reward to me.  And I really don't feel like a 18 hour stint at the cabin is a risk.  Sorry guys, but I follow your rules to a T, but this one's not really lining up.  You'd know if you had a cabin, kids, and the need to be out of the city and be by the mountain.  I also started to exercise this week as well.  Out of the last 7 days, I walked 6 of the days.  Anywhere from a mile to a mile and a half a day. 
This has been tough to fit in but my nutritionist said that I will only start to gain weight when I work my muscles.  So walking was the goal last week, going downstairs to the gym will be the goal this week.  I got a lot of lifting and eating to do to get this 160lb body back to 200lbs.  And lastly, I've been on average going into the Infusion clinic to get platelets and red blood cell transfusions 6+ times a week.   Last week I only had to go 4 times.  I had 3 days off, which was insane.  Hopefully this will lighten up my 7 day a week SCCA schedule and give me a day or two off a week.  We'll see.  Anyway, stoked on last week.  It was very encouraging.

Friday, November 20, 2015

I surrender

Well, I've given in.  4 weeks and 1 day from when I was released from the pen, I finally surrendered to "this is my God damn life for now and there's nothing I can do about it."
I've asked my Doctors for weekends off, just to be at the cabin, take the kids to the hill and hike and been absolutely denied by them.  "Uh, not yet John.  We want blood work out of you every day.  You have things changing in you daily and we need to keep and eye on this."  Ok, fuck it.  I'm gonna just do what they tell me.  You want me to take pills that burn my feet.  Fine.  Do daily shots that make me get daily transfusions, that then make me get reactions of itching so bad that I want to shower in acid?  Cool.   I'm just all in at this point and it feels pretty good to finally surrender and go with the flow.  Now when something actually goes my way I'm not so bitter that I can actually enjoy the moment.
Like today.  I went in at 8:15AM got blood work done, then had an ultrasound on my stomach to see if I have GVHD going on in there and then came home.  We called the nurse to see what time my transfusion was going to be and boom, my platelet count was thru the roof.   No going back for me today.  I took a nap, came down to the office and actually WORKED and then got to go to the Queen Ann pool and watch Milo dive as he's now on O'Dea dive team and swim team.  As I type this now, I'm glowing.  It was an awesome day.  And I'll take more of these please.
I will admit though, that this was a mind fuck week for me.  The grand opening and our annual C3 sales meeting is going down in Austria all week.  The reps, riders and company people have done a great job of keeping me in the loop and feeling included but it's not the same.  Being there for this grand opening of the factory we've worked 15 years for to build is something that will only happen once in my life.  And it would of been pretty sweet to be there to take it all in with everyone that helped bring it to reality.  Anyway, Cheers CAPiTA and C3.  It's been a fun ride to watch this week.  Thanks for including me.
Milo hiking around Stevens last weekend.
 Mac was locked in too.
 The CAPiTA Mothership in all it's glory.  Mmmmmm.

 Gums in all his glory. 
 Finest group of dudes and friends you'd ever want to spend your career with.
 Facetime with Cocard and Dustin telling me they miss me.  This was a nice call. 
 The A-Team.  Jess, Phil, Cocard, Backstrom, Brisse, Craven, Stevens and Blue. 
 Party Marty has no idea that the boys stole his credit card under my orders and charged a nights worth of coctails to it to pay for his drunk ass babble.  Paybacks a bitch buddy. 

Wednesday, November 11, 2015

3 weeks out of the hospital

I've been home from the hospital for 20 days now and have been back AT the hospital every day but one.  This has been an absolute kick in the teeth with the unexpected.  I’ve been constantly exhausted and dealing with side effects of all the drugs their pumping me full of.  My feet have burnt so bad thru the night that I have to ACE bandage two ice packs to my feet to even begin to fall asleep.  And this is from a medicine that their giving me to keep me from getting the dreaded G.V.H.D.  Then this blood thinner I’m on (2 shots a day) makes me have to go in a get daily transfusions of blood and platelets, to which I get fevers at night and have to go back to the hospital.   But the team won’t change anything up yet as it seems all that I'm taking is needed in the grand scheme of things. 

Rocky keeping a watchful eye over a late night foot bath.
I got to be honest, this is way harder than I thought it was gonna be.  You go thru all the build up about transplant and for the most part it's to get you thru the chemo, transplant and the stay in the hospital.  That shit was cake compared to being home though.  Today I'll be here from 9:30-3ish if all goes on time.  Which it NEVER does.  It’s unrelenting.  Hurry up and wait is the name of the game.  There is no possible way to plan anything because my schedule changes daily as well as while I'm here.  Which can be pretty frustrating.  Anyway…that’s my pity party, and I know it WILL get better, but for now…I don't feel like I'm living, contributing anything to the wife, kids or house, cause I’m just getting thru the days.  I feel like Maverick in Top Gun where I’m in a tailspin and I’m just waiting to hit the eject button.

The good news is that we got a bunch of stuff figured out over the weekend and I can finally walk without being a cripple. 

Tuesday, November 3, 2015

Home Life

Well I've been home for 10 days now but have been back at SCCA 9 of those days.  It's a full time job doing everything they did for me at home and then getting our asses there on the daily for blood work, meetings, testing, blood and platelets.  My white blood cells have been going thru the roof, which is super encouraging.  Just waiting for the platelets and red blood cells to come back on line which they say takes some time.  Thus the 5 or so transfusions since I've been a free man.
We met with the nutritionist last week and they want me to get 3 litres of fluids in me a day as well as over 2,500 calories with more than 120 grams of protein.  You should have about 56 grams of protein in your diet by comparison.  "Your body's metabolism is like a long distance runners right now.  It's pulling all it's energy right from your muscles and that's why your the skinny pussy you are right now."  167lbs is what I weigh right now.  Fuck me.  I haven't weighed that since 12th grade and my 12th grade self would beat my old ass real bad right now too.  Shit, I think Milo may beat my ass real soon.  I better watch what I say.  My doctors thru me for a tailspin last week too when I was complaining to them about how skinny I was getting.  "Listen, do you know what you just went thru?  What you did was 10X gnarlier than getting a heart or liver transplant.  Doing a heart transplant is like changing a carburetor in your car.  What you did was change the engine, transmission and wiring harness.  Blood is an organ in itself.  Then you throw immune systems in there..."  I had no idea, and glad I didn't going into this.
Today I'm going in so they can pull another bone marrow core sample from my hip.  Should be fun to be reunited with my old buddy Fentinol.