Base2Space

11 months post transplant, I'm really beginning to realize that Cancer isn't a curse.  It's been a total reset to me and because of it, I've had the opportunity to meet, cherish and do things I would never have or could have done before.  I'll just share a thank you letter I wrote yesterday to David Mandapat who runs the Space Needle and Mark Grantor who works for Fred Hutch.

David and Mark,

I can’t thank you two enough for today.  Wow.  I’ve had some incredible opportunities in my life and today ranks right up there. 

The first photo is Haines Alaska on a run called Frosted Flutes.  It was on April 27th, 2007.  I’m 3/4 of the way down right above the Bergstrom.    This day, this run, is single handedly the best day ever I’ve had snowboarding and I’ve been standing sideways for 32 years now.

 Anyway…

This combined with climbing all them God damn stairs produced a similar feeling of elatedness that the above shot did.

For the snowboard run to happen, I only had to put in 75 days or so on the snow that season, swim 3 times a week, and be in the gym the other 3.  Then pay a couple of grand in travel and heli fee’s.  And then for the second photo, I didn’t have to do anything, but let nature take it’s course and then find Fred Hutch, the SCCA and meet you two. And have insurance dish out close to a million to keep my ass alive.

Both challenging in their own ways, and honestly, the reward afterword is very similar. 

Funny that last year at the same time I was walking around the Space Needle, I was getting 31 staples pulled out of my stomach because they had to yank my 12 pound spleen.  And by the way, that doesn’t rank up there with “incredible opportunities.”

Very grateful, thank you.

Johan

10 months post transplant

Ten months ago today I had already undergone 6 days of death serum and my body was prepared for the life that was being flown over from Germany.  10 months ago is a drop in the bucket, but that day, those weeks and months following seem like an eternity ago.

Before going into this thing, I kept reading the new you after transplant, it takes time to adjust, you wont be able to do what you once did, bla bla bla.  And when your about to go thru the biggest thing in your life, reading shit like this isn't encouraging.

Last week I got a pamphlet from Seattle Cancer Care saying "your coming up on your year anniversary."  There were articles in it suggesting that you talk to your employer about coming back to work and about starting an exercise routine but taking it slowly. 

There's really nothing I can't do now, besides get hammered, eat raw sushi, have a sun burn and smoke weed.  My life is pretty normal, except for the daily drugs I'm still on, and the monthly doctors visits.  Everything the pamphlet says I can start to introduce into my life, I began almost 7 months ago, very carefully.

So if your reading this because you found me on the internet searching out stem cell transplant, bone marrow transplant, or myleofibrosis, I'll offer you this...don't believe everything you hear or read.  I think they paint a picture that is pretty grim just to prepare you for the doom and gloom.   Believe in your doctors, treatment and yourself, be a participant in your recovery and you'll be better off than they make it out to be.

On the 18th of this month, I'm going to walk around the outer ring of the Space Needle for a cancer awareness thing.  John Logic did it a couple of month ago because he won the opportunity by being one of the dudes raising a ton of money for cancer thru Fred Hutch on a stair climb.  I went there to watch him and met the head dude of the Space Needle and he asked me back to scare the shit out of myself.

It's gonna be fun.   

YoBeat Hump Day

Before the kids and I went to Big Bear CA for a snowboard event, a young man that we had met a couple of years before asked me if he could do an interview with me for his blog while in California.  I've read his blog before, have it book marked and thought why not.  

There's a pretty funny snowboard site that "makes fun of snowboarding" on the regular but on Wednesdays profiles riders, industry dudes, etc.  Well Justin sent the interview he did with me to these guys to use for their Hump Day feature.  Give it a read if you like, my answers to the questions aren't really anything special, but more of the response and positivity from the comments.  My goal in doing it was only to raise some awareness for Be The Match as well as for friends of people going thru something like I did. 

Enjoy.

7+ months post transplant

7 months ago my journey began.  I was pretty dead set about not calling this thing a journey, having people call me brave or a warrior.  And I still believe that.  Cancer is a curse.   It physically and mentally changes you, as well as it changes how people look and act around you.

Nurses and Dr.s told my wife and I that this would be the toughest thing we ever did in our lives and it was.  The duration of the on going suck challenged both of us on a daily level and still challenges us even though I'm fully back to my old ways of living in denial that anything was wrong with me.  These days I'm living my life like I'm not still getting weekly blood work, bi monthly Dr.s appointments, taking 25 pills a day, ingesting a steroid oil four times a day, staying off booze, being careful who I'm around and what I eat, washing my hands 10x a day and actually tapping out when my body says enough's enough bud.  Was this the most painful thing I ever went thru?  Hell no.  But there was plenty of long lasting uncomfortable moments thru it.  I'm almost thankful for all the times I wrecked myself on a bike and snowboard and had to get surgery, as it was great training to get used to being in pain and taking copious amounts of drugs.

These are my work peoples, in Austria with out me but having a beer for me.

I learned that what they tell you about YOUR cancer is in the general sense.  When this began I was told that I would need to be out of work for a year.  I was back at work full time, with my Dr.s blessing in 4 months.  They said I'd be good to get back on the mountain in late March or April.  I started snowboarding 14 weeks after being admitted into UW and getting chemo and 6 weeks later raced in the longest running snowboard events that my older son won for the second time.  Two weeks after that I was lucky enough to drive to the interior of Canada with a fantastic group of friends and get in a helicopter to be delivered to a mountain top lodge so I could enjoy 4 days of riding the deepest snow.  A week later I got on my first airplane and surprised visited my folks for their 50th wedding anniversary.  The next two weekends my best buds from all chapters of my life came out to visit, grade school, college and Steamboat.  From there I got to tag along with my two boys to Big Bear California and watch them step up to the plate and knock the ball out of the park when the terrain and weather were throwing sliders and fastballs at them.  From there I got back on an airplane and flew to Lake Como Italy to work on future product for our binding brand as well as get a day on the hill at Madesimo.  We rode from Italy to Switzerland and back.  As I type this, I'm in the middle of finishing my presentation for our annual partner meeting that's happening next week.  Back in the air I go to Venice Italy, where I'll meet up with my long time friend and partner George, and we'll drive north to Austria to the Mothership.  The name of our brand new, state of the art, completely hydro powered snowboard production facility.  If that wasn't enough, after 12 years of being on the waterfront with a view of every boat that comes and goes from Lake Washington and Lake Union, we are moving.  We bought a building just 8 minutes from my house and 2.7 miles away.

One of the best parts of the recovery goal, getting here again and getting some!

I guess the moral of the story is, the picture of my future was painted pretty black and white just a short year ago.   If you would of told me then where and what I would be doing now, this whole shit show would of been way easier to do.  Its like watching a scary movie, if you know the ending and what happens along the way then your not jumping out of your seat crying like a little pussy every time the bad guy jumps out of a closet.  But cancers not like that and everyone's journey doesn't always have the outcome that I've been blessed with so far.   I'm still on immune suppressants and working thru some GVHD in the liver.  A mere sun burn can turn my life into a tailspin but for now, I'm enjoying the ride in hi-def!

Couldn't of done it with out her

Thanks for all that helped me thru this.  Meals, visits, car rides, shred dates, hospital visits, cards, emails, Skype, Facetime, texts and good thoughts all made this possible as well as having a partner that did whatever it took to make it happen.  So if you know someone with something and man oh man is it ever more apparent to me know that I'm going thru it, reach out and do something.  Anything too.  Whatever you do, don't say "whatever you need, just let me know."  Just do something.

Below is a mere sampling of photos taken of the people that made all of this possible.  

120 days post transplant

There are days we wake up and Lisa looks over and says to me "can you believe we went thru that crap?"  And I shake my head and go "yea right?"  Especially cause I'm feeling pretty back to normal these days.  Besides the fact that I still have to go to SCCA once a week for blood work and Dr.s meeting, take some 30 odd pills a day, shed skin cells like someone with their first sun burn, itch constantly, look like a refuge from Ethiopia, have to eat 3,000+ calories a day when I remember too, stay away from groups of people because people are filthy, walk around with legs and cankles filled with fluid and am still for the most part a hairless 12 year old when naked.  Other than that...I'm feeling great!  I'm back snowboarding, following the kids around the hill and getting my mind blown on how good they and their friends have gotten.  I've gotten almost a dozen days on hill since I self prescribed myself the chairlift 3 weekends ago and actually gotten to ride powder 3 times now.  This is my fifth week at work full time, and that too is pretty damn satisfying.  Last week was our yearly big tradeshow and we decided that flying and being around that many people was a risk too big and the reward wasn't that much so my boss Gumby figured out another way for me to be present and participate.  I spent 18 hours on Facetime Thursday and Friday talking to customers and industry folks thru an I-Pad mounted on a mannequin.  It was a trade show hit from what I was told, and more importantly sent the message that even though you may be down, you're not out.  

 Macs been riding like a little man these days.  Super fun to see him step his game up.

 Saturday 11" waited for us and Milo and I got back to sneaking into our favorite runs.

This was how I looked at the tradeshow.  Max Headroom. 

 I told my buddy Ben that I would be at the trade show and to come by and see me.  He did, then called me a Motherf*cker.

 It was good to talk to my old boss Keith Leifer.  Dude has hit me up every year on my birthday since I stopped working for him in 1996.

 Mellow conversation going on.

On Saturday we answered some Facetime calls from the convention center on the chairlift. 

 People were kinda pumped for me, but then after I told them we were floating on 11", I got the finger.

 Mac, Owen and Wyatt straight up winning.

BOOYA!

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. 

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.