we don't talk about that.....

We don’t talk about Retirement.

We don’t talk about Grandkids.

We sometimes talk about weddings as a life goal, but not much.

We don’t talk about beating cancer, because in my case that is not a thing.

We try to live each day to the fullest extent in our power.

We try to lean into treatment success.

We try not to let other's stories dictate the narrative in ours.

This is our story and it is still being written.

I take pride in the way I have approached my disease.

I take pride in the way that I defy my disease.

I am proud of the fact that I inspire others.

I am proud of my family and the manner that they have processed and managed this adversity.

We live in the moment.
We seize every opportunity.

I think about what I want my legacy to be.

What do I want to make sure my kids retain.

Perseverance

Fortitude

Resilience

Courage

Grit

Carry On Warrior

The definition of fortitude is persevering into the face of adversity with courage.

My friend, brother, and fellow warrior Jason Baker passed away this past Wednesday.
It was, by no means unexpected. He had been battling Metastatic Lung Cancer for several years and he went into hospice last week.

Jason and I were introduced to each other in October of 2016 by Kelly Fox.
He was freshly diagnosed with the exact same disease as I had been in May 2015.

Kelly asked me if I could give him a call and perhaps provide some encouragement and possibly some direction in navigating his new landscape.

I was 1.5 years into my cancer journey and at this point I had sorted out several key things.

I called Jason the same day. Not sure if we connected right away but I know we spoke to each other pretty soon after.  I wasn’t totally sure what I was going to say to him but I figured I would follow my heart; maybe just tell him all the things I wished somebody had told me in the beginning of my journey.

We talked for about 40 minutes. He was still stunned. I’m sure some of the things I said blew right past him. I know personally my whole first month of diagnosis is a blur and I remember very little.

Something happened that day for me though.
It was the first time I had personally spoken to another man going through exactly what I was going through, there was a comfort in that.
For the first time since I was diagnosed I was talking to somebody who could truly understand how fucked this situation was. He had the ability to empathize more than any other person walking on this planet, and now we were “cancer buddies”.
As I hung up the phone I felt like my conversation with Jason had been as beneficial to me as it may have been to him.
...And so began our friendship.

Over the next couple of years there were lots of text messages and phone calls.
Jason always had a good attitude and despite many setbacks he never complained.

Jason was always “sicker” than I.  He had a lot of problems with fluid build up on his lungs. 
He had to use oxygen most of the time. Additionally, his treatment tore him up with side effects.  But he didn’t complain. He just told me about them matter of factly, then we discussed ways to possibly mitigate them or to make things just a little better.  
I prayed for things to take a turn for Jason. That significant turn never came.


I had the honor of flying over to Great Falls a couple of years ago with brother Fox, specifically to pay Jason a visit.  There he was in the flesh: Metallica T-shirt, scally cap, O2 tank. We had a great visit with Jason and we were both inspired and encouraged. There was comfort in hugging him and telling him that I loved him like the brother that he had become to me.

That visit was in the Winter of 2017 and it coincided with Senate Bill 72 being shot down by the Montana Legislature.  I was eating breakfast with Jason when we got the news.

The disappointment at the table was palpable.

The fight for presumptive legislation was nothing new to Jason. 
He had been fighting for the rights of firefighters for many years before his own cancer diagnosis.

It just hurt that much more with the current circumstances.

Jason had become a bit of a celebrity in the Great Falls area. He was known for his cancer diagnosis and for his efforts to help move presumptive legislation forward in Montana.  

Jason was not able to be the beneficiary of that type of law like I was in Washington State.  It is ironic that at the same time we lose Jason it looks very good for Senate Bill 160 to be passed into law. Almost exactly 2 years after that 2017 visit.  

I really wish Jason would have lived long enough to see that.

2 weeks ago I was invited to Helena to speak to Montana Firefighters about my story and to additionally meet lawmakers who would soon be voting on SB 160. Jason was originally scheduled to present with me, but he was unable to because he wasn’t feeling well, in fact he was unable to attend at all. 
Here is the regretful part...
I flew in and out to do the presentation; I was in Montana only 22 hours.
I should have driven to Great Falls and seen him. For fucks sakes I was right there.
But none of us knew how sick Jason was. It was only days later that he was admitted to the hospital and an MRI showed the cancer had spread to the fluid surrounding his brain, and into his cervical vertebrae. There were no good treatment options except managing his pain and keeping him comfortable.


I will have to live with that one.

I got the news about Jason last Wednesday morning.
I was on a snowboarding trip in the Canadian Rockies. We were just starting our day at Revelstoke.  In the first hour of our day I got several text messages from brothers and sisters inquiring about “how I was doing?”  
“Pretty fucking great!” was one response with a photo from inside the gondola.  

Eventually I got a text from Kelly Fox, the person who had introduced Jason and I.  

“Not sure if you heard yet, but Jason Baker passed away this am.”  
I took the news in, and initially processed what I had just read.
Now the text messages made sense.  
They were probing, checking to see if I had heard.  
I’m sure on the other end of things there was a bit of a scramble. 
I don’t think anybody wanted to be the person to tell me.  
Kelly was the right person.

I communicated the news to my ski partners.
I then stepped off of the Gondola to an amazing view of the Canadian Rockies.
I breathed in the cold, lung burning air and thanked God for such a glorious moment.

I 100% believe I was in the right spot to get the news: in the mountains under a glorious rocky mountain sky, with friends, finding my freedom and living life as hard as I possibly can.
The last time I spoke with Jason he seemed to be at peace.
In that moment on the mountain I was at peace as well.  
I did not cry (although I am on the verge of tears right now).
I did my heavy crying when Jason went into the hospital, when he went into hospice and when we spoke on the phone.

Every phone conversation that Jason and I had ever had always was filled with “Warrior Talk”. Keep fighting, throat punches, fuck cancer, etc... until February 10th.
That night I spoke with a man who was no longer fighting, he had accepted that there were no other good treatment options. He had 100% confidence in his care team, and his new goal was to get well enough to be able to return to home hospice to live out his days.

That goal did not come to fruition. Jason’s condition required a higher level of care than was able to be delivered at home.  His family didn’t need to be running around being caregivers. They needed to focus on being with Jason, saying the things that needed to be said and “just being”

This was hands down one of the hardest conversations I have ever had.
We both cried, we told each other that we loved each other.
Jason had dignity above all else. He was showing me how its done.
Eventually it will be my time, I want to be as settled as Jason when I arrive there.

Life circumstances kept me from immediately traveling to Montana when Jason went into the hospital but my initial emotional response was to go right away.
There were work responsibilities, as well as a snowstorm that paralyzed the area.
Then there was a family ski trip on the books and also my Canadian Rockies Odyssey.
I knew Jason would have been pissed if I had cancelled either ski trip to come to Montana.
My plan was to return to Seattle from Canada on Friday the 22nd and I would be on a plane the next morning to Great Falls to see him on the 23rd.

Jason succumbed before that plan could be executed.
I have to believe that It worked out the way it was supposed to.
Jason wouldn’t want me second guessing myself.

Jason’s memorial service is next Tuesday.
I will not be attending.
I need to guard my own heart, it’s just too close.
Too many parallels.
No disrespect, just can’t do it.

I would be reeling for weeks.

Jason would understand, in fact he would probably tell me to go do something that feeds my soul and touches my version of freedom instead.
I communicated with Jill about this and she, Peyton and Porter completely understand.  

I’m sure all of Jason’s brothers and sisters understand as well

In closing I want to be clear.
Jason did not lose the fight.
Cancer doesn’t give a fuck how hard you fight.
It is an indiscriminate bastard who eventually takes what he wants.
People like Jason and I, and the 250,000 newly diagnosied with lung cancer every year, need to place hope that funding and research will continue to chip away at the power of lung cancer and eventually crush it.

Jason was a warrior. He wore it proudly with the tattoo that Peyton designed.

He approached this with courage, class, and dignity.
Jason Baker leaves behind a legacy.
His legacy is in every person that he touched.I am a better man having known him.

“Jason didn’t die with regrets because he said what needed to be said and lived honestly. He didn’t have unfinished business and told a nurse who asked him what he wanted to have done, “I’ve done it.” He only held on as long as he did to be with his loved ones.

During his last two years, Jason said that as a firefighter one of the strengths he developed is being able to adapt to rapidly changing conditions. He knew courage can look like running into a burning building, but it also can look like getting up every day and fighting cancer. Courage can be continuing treatments that are painful and sickening. Courage can be taking another ride on the motorcycle or grilling dinner for your kids when all you want to do is collapse.”

-Jason Robert Baker Obituary

SB 160 should be renamed “The Baker Bill”

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

Prayer requests are for Jason's friends and family.

Freedom.....

“Freedom is located somewhere outside the box.”
                                                                -Warren Miller

Freedom means many different things to people.
To me it used to be associated with pushing my body to its limits.
I was always trying to find a new challenge or a new way to push myself.
I was alway inventing some ridiculous shit to do, just for the sake of doing it.


In February 2019 it means something completely different. 3.5 years into my battle with metastatic lung cancer freedom is ONE THING: Anytime that I am physically or mentally free of the oppression of cancer.

Physically, The absolute 'most free' I ever feel is in the water.


Since my diagnosis I have had the good fortune to travel to both Mexico and Hawaii.
In both cases my primary activity was snorkeling.  
There is no weight of cancer in the water, I am free to float with the current.

If I am lucky I am swimming with a turtle or 2.
I literally could stay in the water all day.

On land, In the summer, it’s on a mountain bike. 
This is a NEW mountain bike as my old bikes are not accessible anymore. I can’t push my body like I used to do. Now I get a little help from an Ebike, 
My new ride is a badass Kona Remote Control


But....when we get to the top and the trail points downhill, I am back in the game.
I am rolling the trail with my buddies not missing a beat.
Almost like I don’t have cancer, and it feeds me, it drives me.

Winter time brings my favorite activity of all, snowboarding.
This too, has changed for me. Prior to my diagnosis, backcountry snowboarding was my real passion. Going where others are not willing to put in the effort, getting those fresh track, the deep powder. I no longer have the physical capacity to do those epics.  

Typically a chairlift or a snowcat will get me where I need to go.  

I still push, I still strive for the powder, and sometimes that takes a little work.  

Every once in awhile I step outside the ropes and push that edge a little.

It feels good to work for it. If you haven’t done it that way, it may be hard to understand

I know that everybody loves a powder day, but for me it is so much more special.  

The feeling of floating down a bowl or a really good tree glade with a fresh dump of powder is such a thrill and and a rush, I soak up every second of it, I live that moment as hard as I can.
I truly and fully forget that I have cancer during those moments.

Occupying my mind when I am not in the outdoors is a different story.
Being a cancer patient is a full time job.  I always have to be on top of my game: Monitoring my bodies’ response to treatment, researching next steps, always trying to be one step ahead of the insidious beast inside.

Music, that is an escape for me.
It has always been a part of my life.
When I was young, an older cousin lived with our family for awhile.
This exposed me to music that no ordinary 8 year old would normally hear.
Aerosmith, Fleetwood Mac, KISS, The Eagles, Thin Lizzy, etc.....
I know right?  WTF!!??


But music became a part of me, and that continued through my whole life.
Significant moments in time are marked by songs and artists.
Sometimes when I hear a certain song I am instantly taken back to a moment in time.

I have used music to help me to escape the oppression of cancer.
A summer evening on the hammock listening to some of my favorite music is pure heaven, and doesn’t happen near enough. I love to hear live music and I have been fortunate enough since my diagnosis to see many of my favorite bands.

One moment that stands out was last summer when I was seeing the Foo Fighters in Fenway.  Midway though the set, a summer thunderstorm rolled through and dumped rain almost as hard as it could possibly rain, puddles formed, people looked for cover. 
But not me…..
It was like heaven, and that memory is etched in my mind forever.
That was a freedom moment.

The purpose of this essay is to encourage my brothers and sisters in the fight to find their freedom.  Return to those things that you loved before cancer, modify if you have to, but find your freedom moments.  Live the moment.

It’s out there, maybe just a little outside the box.

Looking outside the box, like Warren would have liked.

I was almost born on two wheels.

Ahhh powder, sending it!!!

Some of that musical freedom.

I had the good fortune of having a friendship with Warren.  I spent many mornings over breakfast at Rose's Cafe listening to stories, and having wisdom and inspiration imparted on me.  Those conversations helped me develop my own sense of freedom and were the seeds for the freedom expressed in this essay.

Breathing Room....

The much anticipated December 17th scan has come and gone

The results were good and a great sense of relief has fallen upon my family.

Our lives since October 10^th have been a roller coaster.

To my family it felt like initial diagnosis all over again.

It felt like that to me as well, but at this point in the game, I have built up a robust cancer support network that I didn’t have in May of 2015.

After the initial shock of progression and brain METS I was able to access my network for guidance and support in the next steps.  We had a game plan in place but I was also able to talk to people who have actually had to implement that same game plan. They were able to give me a heads up on what was coming my way next and it was priceless.  

This network included experts in my specific type of cancer that I have seen for second opinions in the last 3 years; this included Dr. Ross Camidge in Denver and Dr. Alice Shaw in Boston.  I emailed both of them about the progression and some difficulties I was having with the new medication (Loralatinib); these 2 Dr’s have more experience with this drug than all others IN THE WORLD, combined. Alice replied to my email within an hour and Ross wasn’t too far behind. They gave me incredible feedbackthat I was able to pass on to my care team at SCCA (there are only 13 ROS1 patients at SCCA in the clinical trial).

I was able to talk to my friend Linnea who was patient #6 in the initial clinical trial for Loralatinib. She was able to talk me through side effects first person; giving me guidance with management and set my mind at ease. My friend Kirk Smith reached out and set my mind at ease about the prospect of radiation to my brain and the difficulties with targeted therapies: been there done that, got a whole bunch of t-shirts.  Aimee Parker took my call and gave me her firsthand experience with cyber-knife brain radiation, which is a big deal but not THAT big of a deal, she reassured me.

The other part of this cancer network is my tribe from Peru. Brothers and sisters that I spent 2 weeks with in November as I worked on reshaping my life after a cancer diagnosis.There is a whole lotta goodness in my tribe, many of them have been to hell and back and some are still occasionally visiting it and in the battle still.  Phone calls, face times, text messages, encouragement from every type of media and communication delivery. Last Monday when I went in for my scans I was accompanied by Regina and my soul sister from Peru Cheryl Weeks.  She is family and she belonged there.

So what do I do moving forward?

I have taken a pretty large chunk of time off from work while we have been dealing with all of this. I never really took any extended time off upon initial diagnosis. I was too busy trying to keep everything “normal” for my family. I only took the time off I needed for diagnostic tests and treatment. This time around, I tried to come back- but the emotional impact of the situation, and a battle with side effects from the new medication - indicated some time for emotional healing, self care, and sorting out life in general was in order. I will return to work sometime around January 9th, recharged and ready to go.My brothers and sisters at OFD have been kind and generous in allowing me to do this.

There is still the powerful side effects from Loralatinib to deal with. My first bout was with psychoactive effects and adverse drug interactions. We had to do a brief hold on the drug for 4 days to wash out and restart. We sorted that out and I thought I was home free and back on 100mg.

Then the nighttime neuropathy set in sometime around November 14th. My hands go numb at night and they throb and burn. We tried pharmaceutical intervention, acupuncture, chiropractic, massage, etc. In the end after 3 weeks of only sleeping on 2-3 hours at a time we stopped the medication for a week. I was getting so run down from lack of sleep that I was becoming susceptible getting sick otherwise, and I don’t need that.

My body was at war with the agent that it needed, to kill the cancer.

Anytime I am not actively doing something to kill cancer, I am stressed out.

After a few days I made peace with it and relaxed.

After a week the symptoms lessened to the point that I could sleep. We restarted at 50mg.
The symptoms have returned but not as severe. I am able to get pretty reasonable sleep.

But here is the thing.... the scan shows that Loralatinib is working.

It is NOT at war with my body.
We are indeed working TOGETHER to kill the cancer.
My lens is a little different after the scan results.

I have to find a way to work with the drug.

There is a give and take, we are partners, and as in any relationship it takes time.

So we will continue to work together, we will sort it out.

Perhaps I will be a little more tolerant of shorter nights because of neuropathy, and maybe eventually as my body adjusts, things will settle down.

Anyways...

The Browns are set to have a happy and joyous holiday season.

Lots of time in the mountains and with family and friends.

We are going to live the moment.

Can’t change the past, no reason to stress about the future.

Get busy livin' or get busy dyin'...

3 months till the next scan.

Breathing room.

I am a Warrior.

I am a Thrivor.

I am the Exception.

I choose the Miracle.

Prayer requests:

Loralatinib continues to be effective against the cancer.

Neuropathy goes away.

Restful sleep and peace for my whole family.

Jim

#holdfast