Monday, January 11, 2016


Day 100 is today!  We made it out of the Transplant Team alive.
Last week was pretty all time if I do say myself.  Monday was normal blood work and Wednesday we had our exit meeting with Dr. Storb.  Doc rolls into the meeting room and looks at us saying "how you doing?"  KILLER!  Can't wait for all these rave reviews during this exit meeting Doc!  To which he was very stoic, like he had some not so good news for us.   But after rolling thru my results in which I passed everything with flying colors, including my lung capacity being larger than when I started ("Wow, never really seen that result before!) he said that I'll be tapering off most of my drugs over the next couple of months on most, and on some up to a year.  The only drug I'll be on for life is penicillin because of the lack of a spleen.  He then warned me to be religious with my use of SPF 30 anytime I'm in the sun as a sun burn can kick in GVHD anytime down the road.   He seemed ok with me going to the cabin, as the Long Term Follow Up people said it was cool, but suggested I not "bored" until a month or so down the road. 
Friday was the final step to being released where I had my Hickman Line literally yanked out of my chest.  Man did that feel good.  Seeing how that line goes in me a good 6 inches or so and is held in place by a little o-ring that bonds with my skin.  And now that o-ring is stuck in me and makes a squeak when pressed like a dog toy.  Just another foreign object in me at this point.  Screws, immune system, o-rings and chicken bones, but that's another story.  Shit happened in college, so it doesn't really count.
Now I only have my weekly check in's / blood work with Dr. Becker, my original oncologist.  It's time to put some weight on this frail body of mine, join the gym, get back to the cabin and on the hill when the Doc says it's ok.   Hopefully the hair comes back too.  Arm pit, beard, chest and nutz are all a little cold these days.  I feel like one of them hairless cats.
Too late, I'm back!  It felt incredible to ride the lift and follow the boys down the hill too.  First couple of runs were with Milo and Kimo, Keala's dad.  Then we hooked up with the Cline clan, to which Owen was the only one of all kids running a "I slash with Nosedradamous" sticker.  I asked Milo why he didn't have one?  "Why?" was his response.  Then Wyatt the other Cline kid see's me and throws out a sincere "It's good to see you back on the hill Johan."  I don't know if those kids were coached into that, but it sure felt good.  Kimo's wife and other son Levi showed up and my last two runs were following a train of kids destroying every feature in the park.  It was awesome.
After 6 runs I figured I better go check in with Lisa so she wouldn't worry.  She wasn't all for me going up on the hill yet, but supported my lack of better judgement in doing so.  After a little rest and lunch, Milo grabs me and says "lets get back at it."  As I stand up to follow him out, the long arm of the Lisa put a screeching halt to that notion and it was time to pull the cards out and play a couple of games of Gin Rummy. 

Sunday, January 3, 2016

Walking thru the tunnel

Last week I saw the light at the end of the tunnel and now I'm walking thru it.  
Monday met with the "team" and discussed me leaving them by the end of this up coming week.  We had to get my magnesium levels up so I could get off of the home infusions I've been doing since leaving the hospital.  Lisa and I brought up the confusion we were having with not being more than 30 minutes from the hospital, that was keeping me from the hill and cabin.  Doctor Storb said that he understood and then proceeded to talk around when I could get the hell out of Seattle and go to our happy place.  But it seemed like he was hinting that the middle of January would be a good time to venture up there safely.  I also asked when I could get back on the booze wagon.  Not boozing boozing, but the ole have a beer or three with friends during social gatherings and it looks like I'm riding the sober train until the end of March on this one. 
During the rest of the week I went appointment to appointment so they could run me thru almost all of the tests that I did during the 3 week prep leading up to me entering the hospital on September 25th to make sure I could live thru the transplant.
We did a bone density test, to see how jacked the drugs made my bones.  Did I get osteoporosis from the meds?  Nope, clear for take off there.
There was a pulmonary test, which my intake was 10% better than before I took this "journey."  The tech said that it was because I was as light as I am and my chest could expand more than when I weighed more.  Another good result.
The dentist was up next and the first question they asked me was how often I flossed my teeth.  Twice!  "Twice a day, that's great!"  No, twice a year.  I get two teeth cleanings a year and each time the hygienist flosses my teeth.  It's against my religion to floss Doc.
My results came back from the bone marrow aspirate.  I've taken over the Germans blood type of O- and lost my blood type of B+, but still retain my platelet type of B.  Apparently they don't kill all of you during the chemo stage and your platelet type is genetically part of you forever.  Also they said that there is no sign of cancer in my marrow.  Seeing how the type of cancer I had is curable, that's a good sign.
I had a ultrasound on my stomach to see whats up with the small blood clot I got after getting my spleen out.  I've had to get two shots a day since July because of this and honestly, it sucks.  Bad.  I hate these shots more than anything I've gone thru besides the spleen coming out.  They burn, sting and I'm a giant pussy about needles.  The results showed no clot present and boom, no more shots for me.
The best appointment I had was a Long Term Follow Up (LTFU) departure class about what we can and should do once we leave the transplant team and go back to where ever the hell we're from and get in the care of our normal cancer docs.  Lisa and I stayed after class to ask specific questions about me and what I can and shouldn't do.  THIS was the home run meeting we've been waiting for:
Yes, I can go to the cabin once released from the transplant team.  My immune system is still delicate and growing but I will show signs of an infection or sickness before going septic and the Monroe hospital being 45 minutes away is close enough for me to stay alive.  Just tell them I'm a transplant patient and call the SCCA and they'll tell them the drugs to administer to me to keep me going should something go down.
My platelet count is high enough that I can snowboard with out bruising.  Whether my energy and fitness level will allow it is another story.  But I'm betting that this skinny fuck could muster out a couple of runs.
The gym is a go.  Bring some clean wipes, wipe down everything I touch and go when no ones there.
Air travel?   You betcha.  Not for vacation but if I have to go from point A to B, I can.  Bring those clean wipes again, my own drink and food and let it rip.  I should wear a face mask too, not for protection but to keep people away from me.
Sporting goods event are a go as well.  As long as we're rooting for a shitty, loosing team and no ones in the stadium.
This week I have my good bye meeting with the yellow transplant team and then Friday I get the Hickman line removed that goes directly into me.  This is the final straw in me walking thru the tunnel into the the light and getting a well needed tan. Not the chemo tan I'm sporting now.
Bring on next week!

I walked around the waterfront by SCCA in between appointments last week and figured that this would be a pretty good boat to move into with Lisa, once the kids were out of the house that we're gonna sell as soon as their gone.  But upon further internet investigation, the 2.3million price tag is probably gonna keep us land locked.
Gnar and Milo took off from Seattle all week since they were on vacation and we couldn't be at the cabin.  Dr.s orders.  The Clines took over the parenting duties for the week, while Gnar took over the "we wish you were here Dad" text and photo's.
The older dudes at Stevens took Milo under their wing and brought him out in the side county to build jumps and jump off cliffs.  This one's kinda large seeing how he's landing out of the frame.
 Classic Tontini's. 
My first sober New Years in 29 years with these dudes.  One of the more memorable ones in a long time.
Our French friends the Soultrains have been great with the boys, jumping in and getting them to and from the mountain like the Clines have.  Natache sent us this shot of the boys coming back from an event in Wenatchee.  It must be a French thing that Milo's doing, as we've never taught him that.
It must be the BMX in me, cause I jumped the gate yesterday and went up to the cabin to clean up from the week that the Clines and the boys spent there.  Good thing we drove all the way up and back so we could walk into a spotless cabin.  Thanks again for being great humans Jason and Kim, as well as taking great care of our land yacht.