Thursday, September 1, 2016

I choose not to settle....

Clinical Information:
On my last blog post dated July 1st I had just received "stable" results on my most current CT Scan.
I resolved to take a deep breath and live life carefree for the rest of the summer, as I didn't have another Scan till late August, well...that is what I did, but more on the summer later.
I recently traveled to New England for a vacation with my family, while I was there I sought out the consultation of Dr Alice Shaw who is know to be one of the worlds foremost experts on ROS1 cancer drivers.  Dr Shaw and Dr. Campo carefully reviewed my chart and were quite impressed with my progress against the disease.  I couple of suggestions were made to consider for my current line of treatment and some really hopeful things discussed about my next line of treatment.
Its always reassuring to have somebody take an objective look at your case and back up what you are doing.  At this point some really big brains have reviewed my case and here is what they have said.

"Your response can be categorized as miraculous"-Dr.Keith Eaton, SCCA University of Washington

"Your response has been amazing"-Dr. Alice Shaw, Massachusetts, General.

"You have responded to your treatment exquisitely"-Dr. Meghan Campo, Massachusetts  General.

"We had to look pretty hard to find active disease on your scans" Dr. Ross Camidge, U of Colorado.

On the heals of all of that I had my most recent CT scan on August 24th.
Results showed continued stability, and even 1mm more of reduction.
My disease resistance number is now 13.8mm compared to 70mm when I started treatment.
So I continue the current pathway, chemotherapy every 21 days and the hopes are that everything remains stable and this part of my disease management has lots of duration.
We wanna give those big brains that I visited time to find new and innovative ways to stay in front of this stuff.

Dr. Shaw and Dr. Campo
Choosing not to settle, living life.....
My friend and fellow cancer fighter Kirk Smith used that phrase recently and I really like it.
So after Junes CT scan I decided to have some fun this summer.

Whats this Dirt Biking shit?
Does it make sense or does, it seem reasonable that a Stage 4 Lung Cancer PT on blood thinners decides that Dirt Biking is his new form of primary summer recreation?
Hell No!!!!!
But to many people it doesn't make sense that I am still alive!!!!!!
In the winter I re-found freedom on my snowboard, if you tried to follow me on the mountain you would never know I was sick, I just let gravity and my skills do the work.
A few weeks ago I dusted off my dirt bike and found a similar freedom out on the trails.
It gives me the trill of the speed and the trail without the cardiovascular load that riding mountain bikes or running does.
So there it was.....for the time being I'm gonna ride my Dirt Bike.
I just gotta try to remember Dr. Eaton's words, "try not to bleed"....
Gotta be Jim Brown...
I celebrated World Lung Cancer Awareness day on my scooter
Rad Racing Stuff.
The end of July brought the Rapha NW Classic JR Stage race.
This is a race that I co-founded 5 years ago to give junior riders the spotlight at a road stage race.
The event has grown to be the largest "Junior Only" stage race in the country and that is a fact that I am very proud of.  I was able to spend time with lots of my cycling family and had a couple of great treats.  For the first time since the inaugeral year RRNW took a Overall GC title, in fact...we took 2.
Jack Spanger and Callah Robinson respectively won the boys and girls Junior D(11/12) titles.
Top put icing on the cake my man Lewis Whiley won the 17/18's in the Kona Jim Brown SR Memorial Road Race, it's always awesome when one of my riders wins my dad's namesake race.
Callah and Jack take the overall titles
Lewis Whiley delivers the big win
New England/East Coast Whirlwind
The "Brown Brood" including my mom loaded up on a plane and flew out to visit my brother Andy and his family at their home in New Hampshire, this gave us great access to Boston and NYC.
The trip started out with fulfilling a childhood dream by attending a Red Sox game at Fenway Park.  It is a little know Jim Brown fact that when I was a kid I was a HUGE fan of stick and ball sports, I lived and died by the Red Sox and the Seahawks as a grade school and middle schooler....
Another highlight of the opening weekend was a lobster feed that left me having to lay down on the ground to recover from eating some much of that red gold.
We scooped up our portion of the brood and did a little NYC time, my girls were beside themselves about the opportunity.  The first stop on the tour was visiting our friends Billy and Lianna Durney and their restaurant in Brooklyn Hometown Barbque.  It was so good to catch up with them and we were treated to a meal fit for royalty, never had some much good barbque cooking in my life.
The next morning brought a water taxi to Manhattan.
First stop on the island was the 9/11 memorial, there are really no words to describe the gamit of emotions that being there brought forward.  Bella was only 3 years old when 9/11 happened and the other girls not even born, the memorial helped Regina and I explain the mystery of 9/11 and the impact and ramifications of it.  
Probably the most crushing thing for me was seeing the fire apparatus that was destroyed when the buildings came down, knowing that in most cases none of the men assigned to any of those rigs came out alive.  
I very much endorse a visit to the memorial.
The afternoon brought our trek "uptown" and Times Square, my girls went Bananas over it.
The lights, the energy, the people, it is all so much to take in, its like another planet.
My girls can now check off "Broadway Show" on their list, we went to the "Lion King" and it was awesome.  The next morning brought more time at Times Square, and a visit to 30 Rockefeller Plaza and the home of NBC Studios.
The closing portion of our NYC leg brought a trip to the American Museum of Natural History and a horse carriage ride in Central Park.  Finally water taxi back over to Brooklyn and come classic pizza and we were back on the road to New Hampshire.
Back at my brothers house for the last couple of days, mountain resort, beach time, and some soccer.
It was a whirlwind 10 days and when we got home I needed a vacation after my vacation....
Here's a bunch of pictures....
Brown Brothers Inc...
Fenway and Red Sox
Crippled by lobster...
Billy Durney and our #fuckcancer pose
Ladder 3
Brooklyn Bridge
9/11 Memorial

Entire Brown Brood

What else......
Bella went on a mission trip to Mexico and had the time of her life.  
She followed that up with a trip to Young Life's Malibu club where Regina and I met 28 years ago.
Phoebe and Lilly both went to overnight camp at Black Lake Bible Camp.
In mid July Regina had an acute appendicitis and had to have emergency surgery.
I passed a kidney stone just to keep things interesting.
Regina went to LA and got to see Adele for her birthday.
Lilly's soccer team won 2 tournaments. 
Regina, Bella and I got to see Macklemore in Olympia.

 I will close it out now, been a great summer and this was a pretty long post so thanks for sticking with it.
We continue to be amazed at the love and support our community shows us throughout the past 16 months of this cancer journey.  This summer was much better than last year and our friends and family had a lot to do with it.

My specific prayer requests.... if that is your thing:

Complete healing from metastatic adenocarcinoma
Continued management and stabilization of my disease
Peace for my family
Restful sleep

I am a Warrior
I am a Thrivor
I am the Exception
I choose the Miracle

Warm Regards,

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