Thursday, September 14, 2017

Base 2 Space



On October 1, there's a group of us from C3 climbing 832 stairs at the Space Needle in the Base2Space event to raise money for Fred Hutch Cancer Research.

 Cancers a funny thing. It's not IF you've been affected by cancer, more about when you will be affected by cancer. And you can either pay it forward or pay it back. For me...I'm paying it back. Two years ago cancer never touched my world. I didn't have a connection or experience with it.

I put together the C3 Incredible's team for two reasons. First and foremost is raising money for a cause that saved my life while continuing to repay my debt. Second, to raise enough money that one of our team members gets to shit themselves walking around the outside of the Space Needle ring like I got to do last year.

My buddy John Logic did this race in my name 2 years ago and raised $5G, and got to walk around the Needle. So...with the group of people we have, I’m confident that we can put one of our peoples on the outside of the ring.

Donate for the sake of paying it forward and knowing that the shit show I went thru two years ago was 10X easier than someone in my same situation went thru two years before me. The Fred Hutch and the research they do is the reason. They money raised supports the quest to cure cancer, so donating supports all that they do.

Thank you Johan

Ps. This isn't a competition for who donates the most bucks, $20 goes a long way if everyone kicks in. Here's the donation link.

Friday, June 23, 2017

20 months post transplant update, welcome to Steriods

I can tell you the days of blood tests, hospitals and worry are long gone from my life like they were a short 2 years ago when we were getting going with my transplant process.  And I finally know what it means when we were reading up on transplants and life after, what they meant when saying "you'll be getting to know the NEW you."

Back in February I finally tapered off of Tacrolimus, which is the immune-suppressant used to allow my new immune system to figure out how to work with my body and not kill me.  I was highly immune suppressed at first, which made me very susceptible to the potential of sickness.  I've had two colds so far and my new immune system has handled them like the champ it should be, seeing how it came out of a 20 year old.  But since getting off Tacro, I noticed that I was having a hard time opening bottles, and my hands were always sore but never really thought much of it.  Then Lisa asked me to do this online yoga stretching with her at home and I couldn't bend my wrists in order to do a push up, or any of the stretches for that matter.  My calves and ankles were super tight and my hamstrings felt like they were always worked out and tenderized by a meat grinder.  I told Doc about it and immediately the dream of being off Tacro was over.

Five weeks ago I had the feeling that eventually I'd get on some drugs for the symptoms going on so I started going to physical therapy / chiropractic rehab twice a week to physically work out my stiffness.  They do deep massage, graston techniques and then rehab on the fascia to loosen things up and get you moving in a normal way.  It's been a game changer for me but I knew that it wasn't enough. 

Come to find out, the majority of transplant patients get Acute GVHD.  Meaning they have some sort of ailment that the new immune system creates in the body right after transplant, usually in the first 100 days post transplant.  It can dry your eyes, toughen your skin, do a number on your mouth, and or attack a organ.  I was one of the lucky ones that never got that.  But what I did get was cronic GVHD.  Unlike the cronic that Dr. Dre raps about, cronic GVHD goes after you when you think everything is sailing along just fine.

So before I went thru transplant I talked with TWO people who had both been thru transplants.  That was about the extent on my research into Myelofibrosis besides what my doctors told me.  I didn't want to read in a Google MD page that I was going to die in 3.5 years like they say everyone will.  So with the two dudes I talked too, both told me that when (WHEN) I get on the steroid Prednisone, that I would be mental.  One dude would get so emotional that he would cry over his bagel and cream cheese.  The other said that he was just a fucking asshole.  Unbearable to deal with from his wife's perspective.  Neither of this sat well with me and to be honest its one of the things that I've been dreading since I heard about it.

Talking to my GVHD doctor about my concerns, we decided I'd be a good candidate for a clinical trial where I use less Prednisone than would be typically given as well as be 1 of 186 people in the world involved in a test on a new drug for GVHD.   Normal dosage for Acute GVHD with Prednisone is 2mg per kilo of weight, which would have me at 190 mg of Prednisone.  For chronic GVHD it's 1mg, putting me at 95 mg, but with my concerns and the clinical trial I'm on 70mg along with the study drug.  

So far, so good.  I have nothing but great things to say for my improvement in a week on the roids.  Swelling in my right ankle is close to gone, I don't ache when I get up in the morning like normal, it takes me a little longer to get to sleep but that's easy, and because I worked myself up into a frenzy about this shit before hand, I'm making sure I'm at the gym daily doing some sort of physical therapy exercises, stretching, lifting and cardio as well as still going to physical therapy.  I also have post-it's placed in the car and on my computer reminding me I'm on drugs and to not be an asshole.

One of the two dudes I first talked to about going thru a transplant a couple of years ago is at the physical therapy place I go too.  He's working out issues in his shoulder.  I told him what I was going thru and he shrugged it off like it was nothing.  "This is what we do now.  Its no big deal.  GVHD will come and go, and its our job to catch it, fix it and move on. "  This was really refreshing to hear and reminds me of what I DID READ about life after transplant.  That you'll spend the next two + years after transplant adjusting to the new you.  And honestly, that's not really a change from life before transplant.  I've always been adjusting to the new me with every injury, hang over, surgery or ailment. And chances are, so have you.

Again, if you found this page, I continue to write in it as a reminder to myself of this cancer trip because at 20 months post transplant there is so much we've gone thru that I tend to forget.  It's kinda rad to read back at the progression of a getting better and how fast it is on paper vs. actually going thru it.  I also write this as a resource for someone like me two years ago.  An honest account and play by play of going thru something totally shitty and coming out the other side pretty fucking awesome and lucky.  Lucky in the sense that we caught what I had early and we had the opportunity to treat it.

In the past two months we've lost two friends who battled cancer.  One guy didn't catch his in time.  He was waiting for his insurance to kick in before he got looked at for loosing close to 60 pounds and when he did get checked out, he had stage 4 pancreatic cancer.  I got to reconnect with him 4 weeks to the day he died and have lunch.  I was very sobering that he admitted that he was the reason he was going to die.  That he didn't get checked out for fear of a hospital bill and what was potentially going to be told to him.  Our other buddy died after a 5 year battle with a brain tumor.  He went out like the champ he was.  Fought it to the end, did everything the hospitals, his wife and kids asked of him and stayed humble, funny, and positive.  One of the few beers I've had over the last 2 years was with him on the last day I saw him and I can still taste it.    R.I.P. Jason Locking and Nick Larson.

Its June and we're still hiking for the snow.  The goal is 12 months on snow this year.  Every month get at least one day on snow.  June was month 8 for me.  We had to hike a bit for it, but it was my fathers day present. 
 My boats still in the warehouse, but I've been getting on others and surfing is one of the best things for my GVHD.  It does a full Physical Therapy workout in 10 minutes. 
 Cooking for the work crew using smoke.  Probably really good thing for someone who had cancer. 
 Back to back Euro trips in April and May.  Always fun with my partners and friends.
 We've got two high schoolers now, freshman and seniors. 
A care givers job is never done.  Even though she's got less on her plate with my shit, she still deals with my stuff on a day to day basis.  Like a champ. 

Saturday, March 18, 2017

John Leslie

 I met this dude last summer at Mt. Hood and thought he WAS the able bodied coach of the Canadian National Para-Olympic team. 

Friday, February 24, 2017

SlayRide

Do this event.  ANYone can have a blast ripping two runs on skis or snowboards down the banked slalom course we're building at Stevens for the event on March 18th. 

Thru my life being saved by the Fred Hutch cancer research, Doctors at SCCA and the treatment at the UW,  it felt only right to try and tie what we do with what they do.   Register info here.

Friday, November 25, 2016

Thanks4Giving


Yesterday for Thanksgiving, Milo and I  (Mac was sick, Lisa was cooking) grabbed the split boards and headed up to Stevens Pass for our inaugural rip up the mountain.  Now we've been splitting for the last 6 years but only a couple of times a year.  We split board, but we're not split boarders.  Usually we do it like we did yesterday, pre-season or when the season ends and there's' still a shitload of snow on the hill.  We're what you'd call season extenders in the split board world.  Definitely not the Deeper, Further, and Even Further type of dudes.  We prefer chairlifts, cats, choppers and car shuttles to self powered masochism.

So off we go, trudging thru pow, walking up a fucking hill with not enough snow to open the lifts.  Too many clothes on, sweating our balls off, thirsty, panting, trying to find a rhythm and a track that's already put in while tricking myself into thinking this is actually fun.  It was fun though, cause Milo and I were totally engaged talking about school, sports, chicks, college, shredding, and this is what kept my legs rolling.  We saw people along the way, dudes in proper set ups blowing by us, but we kept at it.

As Milo pulled away from me, I had time to think to myself and think I did.  The East Coast complaining went away and the West Coast everything's awesome came into play and I started to think how rad it was that I was climbing Stevens Pass with my son today.  I got to reflect on how thankful I was for this misery that I'm lucky to be apart of.

Last year at this time my Doctors told me that if I even came to the cabin that I could die.  Straight up.  "If you get any sort of virus, cold or cut, your immune system is so fragile that the distance you are from this hospital (61 miles) your body will go septic and by the time you come in here, it will be too late."  That's the shit our doctors told us.

My cadence kicked in and I was motivated not just to get to the top for the ride down, but pushed by all the people that I'm thankful for.  I've said it before and I'll keep saying it, that it takes a village to raise an idiot with cancer, and I'm living proof of it.

So with this post, I want to give thanks, thanks to the people that gave me the opportunity to be writing this post today:

First and foremost my Family - Lisa, Milo, Mac, Rocky, Clay and Leslie Macomber.

Seattle Caner Care / University of Washington - Dr. Becker, Sonny, Dr. Dan Egan, PA Peter Johnston, PA Kevin, Justin Shepard, Megan, Pilar, Sue, Lindsey, Molly, Erica, Lisa, Debra, Debby, Oliva, Emily, Nate, Natalie, Andrea, Jenn, Larissa, Mercedes, Toni, Cindy, Natalie, & Dr. Storb.

Hospital and Home Visitors: Greg and Julie, Pk, Gumby, Kasey and TJ Gundram, Bob, Ann and Dom Kelly, Gorio Bustamante, Roland Morgan, John, Frank & Aurora Logic, Ballard Pat & Laura McQueen, Riley Goodwin, Thomas Nash,  Sam & Jack Coleman,  Jess Placek,  Kyle Kennedy,  Dan Stanalonis, Kris Sweez,  Adam Gerkin,  Ry-Ry McLaughlin, Steve Kerr, Frank Martin, Steph V, Matt Sirotzki,  Bob and Sue Tontini, Cheryl and Nick Larson, Eddie Spaghetti, Jack Donovan, Beatrice, Lil Stevie and Emily Macomber.

Meal Providers: Michelle & Chuck Cole, Sam & Katy Coleman, Michelle and Stephanie Worely Fannel, Cynthia Coleman, Josh and Krista Burch, Jim Bob Hume, Pat and Jen Reinholt, Brian Bybee, Tristi and Matt Sirtozki, Greg and Julie Tontini, Lisa Glover, Cindy Wolfe, Sue and Dennis Nicholson, Scott and Cheryl Bracken, Martin and Alie Wolfson, Johanna, Sarah and Adam Bradley, Lynette, Blaine and Julie, Natasha Soultrain, Bruce & Kirsten Bannister, Cindy Lykins, Cheryl Ann, April & Kimo Cole, Cheryl Larson and Jean MacBarron.

People that kept Milo and Mac cancer free:  Kim, Jason, Wyatt and Owen Cline,  The Kellys, Carman Klothe, Skyer Klothe, Riley Goodwin, Mark Dangler, Myles Soderstrom, Matt Wainhouse, The Soultrains, Josh Dirkson, Ari Strickland, Brian Schaeffer, Suzanne Bridges, Stevens Pass, Kelly Carter and Chris Danforth.

Skype / FaceTime / Phone and Texters: Mike Rosen, Bruce & Cynthia, Mom and Dad, Emmet, Graves, Lizzy G, Griff, Evan Walker, Sweaty, Wilmoth, Krauth, Ed Munroe, Sparky, Dan Sullivan, Rob McCutchan, Kevin Addy, Matt Patti, Sarah Hudkins, Rahlves, Tony and Gab, Fletcher, Natalie Murphy, Chirs Dixson, Sister Giovanni, Jay Good, Jeff Baughn, Martino Fumagalli, Hor Hey Kleckner and Manny, Andy Hetzel, Benny Pelligrino, Inventor of Snowboarding, Doug Macomber, Becky and Steve Macomber, George Johnston, Justin Afflenux, Maxx Von Marbod, Dustin Craven, Brandon Cocard, Jj Catlett, Scott Stevens, Dan Brisse, Jess Kimura, Phil Jacques, Martino-Claudia-Julietta Fumagalli, Adolph Koleman, Griff, Tay Tay,  Steve and Debby, YourMom206 and many many more.

Yes I know I've left some people out, there's a thing called Chemo Brain, and I certainly have a little of that normally, but then add all that dope and I get dopier.   I'm sorry as I'm thankful for everyone that helped along the way.

To all of you that came, cooked, cleaned and called, thanks, thanks for giving me THIS Thanksgiving.

Monday, November 7, 2016

One year ago...

It's been 13 months since my transplant and a quick year later, life if back to normal.  Even though I was working full time since January, I wasn't traveling.  For the last 8 weeks, I've traveled to 6 of the 8 territory's I cover, been in 69 shops and met with 82 different buyers.   On Friday I leave for Madrid Spain where our annual winter sales meeting is happening.  Things have gotten so back to normal that last week I was bitching at home about traveling here, having to put together this presentation, while missing out on this...and my wife says to me "honey, what were you doing last year at this time?"  Which puts everything in perspective because on November 7th last year, I was infusing myself with 9 hours of meds, taking two shots of day of blood clot medicine, doing anywhere from 3-9 hours a day at the SCCA, getting multiple transfusions a week, and taking enough pills for my neighborhood.  So yea, not much to bitch about these days.
When I got released from my Transplant Care, which had me for a 100 days after transplant, life started to happen again.  Not to brag, but for anyone that doesn't know me and is reading this vs. the death sentences you end up reading when you Google your disease (which I did) THIS is what I've had the opportunity to do since being released from Transplant while still regularly getting blood work, doing follow up appointment and all the other maintenance regimens that are required to keep your ass alive.  Time is what you make it.  So make it great.
Enjoy the photo montage from January until now in no particular order.

I got to meet and surf with this dude, Mike Koss.  Mike was part of the development team for a program I use every day, Excel.  Dudes got a hell of a wakesurf boat, house and love for life.  Coincidentally he's on the Fred Hutch donations board making sure cancer research is fully funded.
I surfed a shitload this summer, with a hat and lathered up with sunscreen. 
"You can't do yard work" is what the doctors told me.  Ok, well now that I have a charcoal filtered respirator can I?  "Yes."
I made our annual trip to Baldface.  If you don't know, find out.  Its that good, and was a milestone goal for me to do.  These guys were so accommodating of me and where I was at with my recovery.  The snow was so good that I said to the owner "I'd go thru another year of cancer to ride snow this good again."
I went into the hospital at 190lbs, got down to 148 and looked like this for a long time, as I was stuck in the 170 lbs of pure pussy range. Not to mention my skin was dusty dry.  I was pretty ashy for a while.
Got to go to my sons high school swim and dive meets as soon as Transplant said it was cool, which was a treat.

This is how we made doing the big trade show work.  With technology.  I stayed in Seattle, my boss got a manikin and attached a I-Pad, and I Skyped in daily and talked to all our customers, friends and reps. 
It was a hit.
I went 6 months and 2 days with out a drop of booze, and when my sober buddy didn't give me my 6 month chip, I decided to enjoy a mellow one after work. 
Traveled to my first demo in February.
Birthday dinners for Tonto and Lisa in February.
30th Annual Mt. Baker Banked Slalom in February with Jake and Graves. 
Which Milo won for the second time in his life. 
Got on my first flight and went to MA, for my parents 50th anniversary.  Snuck down to see my sisters in laws and nephew for a grilled cheese with tomato.
College room mates Sparky and Stick came out to Stevens to stay with us. 
We went to Big Bear for a snowboard magazine 4 day photo shoot with the kids.
Griff came out like he always does, and got to spend time with my favorite French soccer shred mom.
Journeyed to Italy to work on 2017/18 Union bindings with these dudes in April.
Got to snowboard at Madessimo as well.
Watched my good buddy walk around the Space Needle for raising the most $ in a Fred Hutch cancer climb.
Shredded 60 or so days with the kids this season.
Milo and Mac continued to do contests and stand on the podiums.
Went back to Europe, this time to Austria in May to see the Mothership, our new state of the art, fully hydro powered snowboard factory.
And did it with my partners.  The dudes that made our financial world a breeze to deal with during my absence. Thank you.
This is our ownership group for all the brands and companies.  Most of the guys here, we've been working together close to 20 years now.
We shredded at Molitar Glacier too. 
Watched Milo make 12' at the pole vault.

Had a beer with the neighbors.
Went to Hood and rode multiple times, this ones over Labor Day weekend with the family that kept our kids cancer free during my incarceration, Jason Cline.  Everyone should have a Cline in their lives.
COPA America game time.
Sailing in the Cancer Cup
Second COPA game, USA vs. Argentina.
Back on the horse that bucked me into the hospital many times.
Went to the unveiling of the Lambo Lab with Lisa.  Everyone was dressed in black...cept us.
Made it to Whistler in July to Camp Of Champions.  Hadn't been there since 09.
Made it over to Whidbey Island (never been there) to watch Ballard Pat and Laura get married.  Pat would just show up at the hospital multiple times during my stay.
We bought a new office and warehouse building that was completely overhauled.  Here the warehouse is getting set up. 
Did a summer meeting at my buddies lake house with all the reps. 
Mac got up early for dawn patrol surf sessions. 
Climbed the Space Needle with the family.
Then got to roll around on the outer ring that's 3' wide in what felt like pretty high winds. 
Actually enjoyed sunsets.
Chopped, stacked and split wood at the cabin.
Full warehouse of shred gear. 
Outside of the building.
Dinner with the neighbors at Drunky's BBQ.
9/11 doing the same thing with Mac that I was doing on the originally 9/11.
Traveled with reps to hang with retailers.
Flew in and flew a 1966 Huey 3 in and around Chicago.
Got my 5th bone marrow aspirate during my year check up.
As well as a shit load of blood taken out.
And now weight 195 naked, this with clothes on.

Life's pretty good these days, and I have the SCCA, UW, all the nurses, doctors and staff to thank as well as my friends, family and wife.  It takes a village to raise an idiot, and I'm living proof.  If you have cancer and found this page to get an understanding of what you go thru, killer, that's why I wrote it.  Remember it's your trip, make your time shine.