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

Peru changed my life....

I went to Peru emotionally tortured, this guy came back

My trip to Peru changed my life.

If you run into me in person upon my return, I think you will see a difference in me, some have said it is in my eyes, some will say its in my energy.
For a guy who has METS to his brain recently, I’m pretty dammed upbeat.
There is a reason for that.

After a messy 2 weeks on the trial drug, the final decision by my medical team was made on Friday Nov 2 at noon.  I STARTED packing at 4pm.
I got on the plane that night, loaded up with enough anti-anxiety medications to chill out a horse. 

Whatever it was gonna take to get on that plane.
Regina had loaded a movie onto my IPad called “The Mask You Live In”she asked me to watch it.
I did, and I was sucked in hard, I took notes on my phone feverishly.
Essentially it goes after the whole notion of toxic masculinity and the mask that we wear as a result of it.
One of the key points that I walked away with was that it was ok to be vulnerable.

3.5 years ago when I was diagnosed with cancer I drove with Isabella down to Salem Oregon. We went to hear Marcus Luttrell (Lone Survivor) speak. 
He said “Being scared Paralyzes you, fear makes you sharp.”
I bought that that shit hook line and sinker.

Guess what!!!! Having cancer in your body and your brain is FUCKING Scary.
Really fucking scary.
Badass Mother Fuckers don’t get scared.
That is what I have been telling myself....
And this whole time I haven’t allowed myself to be scared.
Watch the movie
“The Mask You Live In”
It moved me.
It will move you.
If you want some of what I have got going these days, I strongly suggest that you check it out.

So I landed in Lima and I took off the Bad Ass Mother Fucker Mask.
I didn’t lead with the normal things that I lead with.
No hard edge, although the tattoos on my hands arrived first, I set people at ease.
Yup the tattoos were part of my mask, and they are permanent, but as I learned from some of my new friends, people can look past those things and see me.
So I led with Kindness.
I led with Openness.
I led with Vulnerability.
I led with Humor.
I led with Humility.
Guess what? People liked that guy.

Terri Wingham and the staff of A Fresh Chapter have put together a brilliant program for cancer survivors and patients to help emotionally rebuild themselves. Doses of humility are strong and frequent between our volunteer assignments and the life experiences of our fellow tribe members. 

During the first week we went to our volunteer assignments in the morning.

My assignment at a preschool in a barrio blew me away and I was humbled.
In the afternoons and evenings the facilitators led us on exercises that were designed to help us unpack the emotional baggage that we carried. Some predating our cancer experiences. Every single one of us has demons lurking in the closest that we were to face head on.
It was emotional.
It was rough.
We called it “The Crying Game.”
One of these exercises involved us collecting some of the baggage that we carried that either no longer served us or was actually harmful.
Those pieces of baggage were written down on a piece of paper and one by one we each walked to the fire and threw that baggage into the fire.

Here is what Jim Brown burned.
Guilt
Resistance to Spirituality
Numbing with substance abuse.
Shutting down emotionally.
The idea that I am a Fraud.

Damn, dat shit felt good.

Over the first weekend we went on an amazing trip into the Andes mountains.
Friendships that had been developing over the week deepened with flights, bus rides, meals together, quiet talks in the courtyard, and shared amazing experiences.
We saw big mountains, green valleys, and we met amazing people living a humble life. 

And then we went to Machu Picchu and once again I was humbled.
I stood in awe, I couldn’t believe I was there, the dream had been realized.
The air was sweet and I sucked in as much as I possibly could.
I wanted that pure sweet air to reach every cell in my body, I wanted it to heal me.
I believe in my heart that it was healing me.
I believe God was healing me.

After a really great weekend in the mountains we returned to Lima.
One of the activities that we did was visit the Ronald McDonald House.
Once again brilliant planning and programming by Terri and her staff.
If you want to seek out and possibly volunteer somewhere in your community, take a look and see if an opportunity exists to to volunteer at a local RMD House.

Programming for the week focused on helping us shape what the future looks like and how we can build it and perhaps have an impact with our story.
Our Hero’s Journey.
I started writing a piece called: “The things I fell in love with last weekend”.
The idea is based on a piece of writing that Regina had sent with me about falling in love with people, places, and experiences.
Over the weekend I had very purposefully tried to live in the moment.
To soak it up and breath it in.
And I fell in love with some stuff and some people.
In a stream of consciousness I started listing out things to write about.
My pen was just doing its thing.
I had made a list and it included specific people and places.
I looked at the list and I was stunned at what I had written as the last item.
Myself.....I had fallen in love with myself.
What? I know it’s kinda weird and it sounds egotistical.
But it’s not, its the opposite of egotistical.
You see I have a saying.
“Jim Brown, no grey area, you either love him or you hate him.”
Well I have spent the large majority of my life hating him.
This probably might not make sense to a lot of you because from the outside I think it probably looks like I have my shit together.
Well....It actually is pretty together but not in my own eyes.
And that is why I have worn the mask for so many years.
The thing that really destroyed me the morning that I wrote those words in that journal is that it took the adversity of cancer for me to come to that realization.
Not just a cancer diagnosis 3.5 years ago, no that wasn’t enough.
It took cancer spreading to my brain for my world to be rocked hard enough to put me in this place. That was a hard truth to face.
But I threw guilt into that fire, so I m gonna embrace this.

I am changed.
I now feel like a wall has been knocked down and that I can love those the closest to me in the way that they need and deserve, the way it should have always been.

I shared the piece of writing that I did with Bella.
I see me in her, I see how hard she is on herself.
I want to stop the cycle.

Watch the movie, it is what kicked off my journey of discovery.
“The Mask You Live In"
You don’t need to get cancer and go to Peru to find the truth about yourself.

So that might have not been what you thought you were coming here to read.

I am good.
I am really good.
I hope we run into each other so you can see it in my eyes and I can tell you about it in person.

Next scan is in a month.
Brain MRI
Chest, Abdomen, Pelvis CT Scan
It’s gonna be ok.

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

Prayer requests:
Loralatinib reverses the progression of disease in my brain and bones.
Peace for my family.
Grace from God.

Hold Fast
Jim

Machu Picchu Pano game was on point with a costume change

Proud of myself for getting it together and making it there.

Legal "Tag" in Lima 

Dat shit I threw into the fire.

Bringing the "Bro" to the people

Sunsets on my 51st birthday November 7 in Lima

Shit got real again...

“There is a fine line between confidence and cockiness.”

-Some Asshole 2004

I may have been that asshole.

The point of the quote, is that sometimes in some situations you have to exude and possess so much confidence to complete the task, that you rub up against that NOT “super clear” line.

It served me well in the Coast Guard, the fire service, and in my athletic career.

Well... I applied a similar approach to my battle to be a Lung Cancer Survivor. Thus far it has served me well.

When I coached cycling, I taught the kids to master the things that they have control over, then when something comes along out of their control, they will have the skill, confidence, and a plan to deal with the situation with a cool level head.

Engage your own advice Jim Brown.

Because its time to get back in the race and focus just like you have done so many times in your life.

This is how it went down:

On October 10th I had routine scans done for cancer surveillance:

 Brain MRI (9 month cycle) | Chest CT Scan (every 3 months)

Here comes the cocky part.

10 days before the scan I told Regina that she didn’t need to come with me.
She had somewhat of a conflict and I assured her that “everything is gonna be fine". But that cockiness faded as the scan grew closer and that familiar foe “scanxeity” creeped in and ebbed away at the confidence.

I became pretty unsettled in the 48 hours preceding the scan, people around me sensed it.  Regina threw down the gauntlet and said there was no way she was missing the scan and its results. 

Dat shit didn't go so good.

Medical Mumbo Jumbo is above.

The more lay-term friendly explanation is:

There is evidence of cancer in my brain (2 confirmed spots).

There is cancer in my right 6th rib and it has eaten a 2-3 cm hole in the bone.

Fucking game changer.

There is just something about that evidence of 'cancer in the brain' part that changes things so much for those who have heard those words.
It doesn't matter how MUCH Cancer there is, just that there IS Cancer there.

I have had clean scans since April 2017. 
That progression was limited to 1 Lymph node in my chest and it was pretty minimal.  This is when I started Xalkori (2nd line of treatment).

Devastated

Deep Breath!!

Be stunned for a couple days.

Consult with your team.

Make a Plan.

Execute Plan.

Stunned:

We cried a lot.

When we talked to the girls about the new development, it was very hard.
Obviously we have had this type conversation in this very room before.
Bella is away at school so I called her after we had made sure she had support.

I went mountain biking for some fresh air.

I went on a short road trip with a couple of my best friends and got to see Bella play soccer over at CWU.

Consult:

There was a general plan in place for disease progression.

“Everybody has a plan until they get punched in the face.”  
                                                          -Mike Tyson

This was the 2nd time I have been punched in the face with disease progression, this time it hurt much worse that the first, because of the location and nature of the changes.  My team was on it right away and the clinical trial coordinator was in the exam room within minutes of the news.  The preliminary EKG and screening was done before I had even left SCCA for the day.

Dr. Keith Eaton is my team leader and he is my guy.
Jennifer Jacky-ARNP is his partner.
Together they bookend my care like no other team could.

I reached out to Dr Ross Camidge in Denver & Dr Alice Shaw in Boston.

I had traveled to see both for second opinions and they each told me that they were on my team from then until I didn’t need their help anymore.

Both contributed some great information and input to to the evolving management plan.  Dr Jing Zeng from the University of Washington department of Radiation Oncology was added to the team.

Make a Plan:

Scan the rest of torso and pelvis for metastatic surveillance.

Radiate the rib to try to alleviate the discomfort of the rib.

Start the clinical trial for Loralatinib.

Rescan Brain and Chest in 6-8 weeks.

Execution:(In progress)

October 10th: Begin washout of Xalkori (previous medication), Prescreening for Trial. 

October 16th: The rest of my torso and pelvis was scanned (scan was clean of further metastasis).

October 17th: My rib was radiated at UW to faster stop the lesion and relieve me of discomfort.

October 19th: Start Phase 2 Clinical Trial for the drug Loralatinib.

November 2:  9:15 am: 2 week Trial Labs and EKG (*required for trial).

11:40pm: Get on a plane to Peru (assuming blood work and EKG clean).

November 7: Celebrate 51st birthday in PERU.

November 17th: Return from Peru.

Yes I am still gonna go to Peru.  Is that Cocky?  Sorry....

The execution of the plan reads pretty smoothly and appears almost simple.

I can assure you that formulating and executing this plan in a timeframe that allows me to still go to South America on November 2 is an astounding feat.

My people GET SHIT DONE.

So, it is a set back, we can deal with it but we are not without our battle wounds. My entire family is suffering from Post Traumatic Stress.

“Mom, this feels just like when daddy was first diagnosed”

-Lilly Brown Oct 12, 2018

We will be accessing some resources to help everybody deal with the emotional scars that this cancer journey has brought every member of this family.

The Brown machine rolls on, the kids grind away at school.
Bella just wrapped up her Freshman season at CWU Soccer.
Regina continues to touch others around her both professionally and personally.

I am going to be me.

I am gonna do it my way.

And I shall continue to rub up against that line.

In other news.

The Hold Fast Project Website Launched!!!
You can check it out here!!  
The Hold Fast Project  Thanks to a good friend for making that happen.

And yes I said I'm going to Peru!
I am going on an amazing adventure on Friday.
A Fresh Chapter  There will be some great stuff coming out of this!!!

Follow me here on the Instagrams:
Jump on there and give me the follows.
therealjimbrown  This one is still a baby, had to start over.
theholdfastproject She's a good one too eh?

Facebook Machines:
Big Daddy's Facebook!
The Hold Fast Project!

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

Prayer Request:
Peace and levity for my girls.

Go out and Kick Ass at something today.

Oh and by the way blogspot and its ease of use sucks balls.

#holdfast
Jim