Monday, October 26, 2015

FREEDOM!

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.


1 comment:

  1. "style matters", yeah Milo!
    you are on the way to strong and well! so good to read these updates, you make me laugh. wish I could do the same for you 😄

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