Monday, May 15, 2017

Maui, 2 Years, Disease Progression, Generosity...

So I will start with some awesome news here....
I am writing this blog post whilst on a flight to Maui.  An opportunity presented itself for me to get out of town and soak in some sunshine, I am going to embrace it and go live some life.  The amazing generosity of our community has provided some great opportunities for myself and my family as we work our way through the cancer journey.  This trip is just the newest addition to this generosity, I am humbled and at the same time overwhelmed.  I will be meeting and making some new friends on this trip, and I feel like my life is going to be tremendously enriched by the people and the experience.  For the next few days I will be riding bikes, swimming, snorkeling, and laying on the beach, I'll take it.......
Morning coffee in Paradise

2 years:
As of May 6th, 2017 I am  officially a 2 year cancer survivor.
The road has been challenging thus far but my team has made it happen.
Continue to believe that I choose the miracle, and the miracle continues to choose me.
I am a fortunate and blessed man.
New tattoo to commemorate my 2nd anniversary is in development and will happen soon.

Shit just got real, again....
On April 26th I had a CT scan to monitor my treatment.
For the first time since I started treatment the news was not awesome.
Up to this point everything thing has shown reduction and stabilization in disease.
This time was different.......
The CT scan showed what appears to be disease progression in 1 lymphnode.
Remember that my Lung Cancer had metatisised to my lymph nodes and bones.
This pesky Lymphnode went from .5 X .6cm to 1 X 1.1cm over the last 4 months.
I'm no rocket-surgeon, but that is double the size.
This is the ONLY place that showed any progression but it was enough to cause concern for Dr. Eaton.  I am NOT symptomatic from this development in fact I have been feeling really well and have been exercising more recently, since before I was diagnosed.
Dr. Eaton felt like my first line treatment of chemo infusions had run its course and that my cancer had adapted to the treatment.
Out comes my silver bullet......
Early in my diagnosis, I had my tumors genetically tested and as it turns out I have a mutation called ROS1, which has a targeted therapy that has proven to be very effective and durable in clinical trials.
Let me highlight the fact that only 1% of Lung Cancer patients have this genetic mutation, that in itself is amazing.
So why didn't you start this treatment earlier in the game Jim?
Because I was responding to first line standard chemotherapy so well, all of the specialists said to ride that train for as long as you could.
I sought out opinions from specialists in Denver and Boston on this subject.
So I rode that train for 22 months, and 30 rounds of infusions, and then the train ran out of steam.
So here I am starting 2nd line treatment, it is basically chemo in a pill form and I take it twice a day.  The side effects are expected to be less severe than chemo infusions and I will not be riding the roller coaster that infusions brought me.
I have several friends on this therapy and the reports are all pretty glowing.
This magical silver bullet of a pill (Xalkori) costs $15,000 per month.
Because my cancer was ruled to be service connected to my job these costs are covered.  I want to thank WSCFF, IAFF 468, D7VP Kelly Fox, Chief Larry Dibble, and City Manger Steve Hall for supporting my claim and helping this rightful determination be made.
The disease progression is something that we knew was eventually going to come, and I had big talk about how I was prepared for it, we had a plan, and it wasn't going to be a crisis, but when the Dr punches you in the face with the news of disease progression there is no easy way to receive that news.
The first few days were rough, but my treatment team was right on it and I had my new line of treatment in my hands only 5 days after the CT scan.
Our support network swept in and took care of us on the emotional and nuts and bolts side of things, I still am amazed at how much love has been extended to my family in this journey.
So our journey has a new pathway and a new rhythm to it, I am adjusting to the side effects and relishing the fact that I don't have to schedule my life around infusions, or miss almost a week of work once a month.
We will prevail.....many people have had it a lot worse than I have and I never lose sight of that....

Awesomer things.....

My work at the Olympia fire Department continues to be rewarding and impactful, I am proud to have a part of bringing EMS to the forefront of our priorities at OFD and love the people that I get to work with.

I have been doing some work on the advocacy side of things:
1.  Helping to reduce the stigma associated with Lung Cancer and raising awareness.
2.   Educating fellow firefighters on the risks associated with our in regards to cancer  incidence and helping teach practice that can help reduce our exposure to carcinogens that cause cancer.

I've been riding my bike 3-4 times a week for the last month and have incorporated some strength training into my routine, including deadlifts, power cleans, bench press, and squats. Bam!!!!!

The girls are doing well and thriving.
Lilly just turned 11 today, and is fresh into a new season with Black Hills Football Club.
Phoebe is loving middle school and just finished up Volleyball.
Bella just received her first offer for college soccer at Whitworth University.
She has a boyfriend who is a really great guy.

Regina and I are doing the dance that so many parents do, trying to create opportunity for our kids that we may not have had access to.
We really hope to try to get away sometime soon for just the 2 of us, but scheduling that is a challenge.  We are doing our best to live life to the fullest extent possible.

Despite recent developments, I have been able to manage the depression that stalked me all winter long.  Feed the good dog....

Maui Postscript:
I got back late last night from Hawaii.
As I expected it was an amazing trip that was highlighted by the people I got to meet and spend time with.  I saw some amazing things, I drove my bike around Maui with  the highlight being ripping some awesome descents.  I built on current friendships and established new ones.
Here are a couple of quotes from my friend Don O'Neill.

"Have you ever seen a guy in a red jersey, with stage four lung cancer climb a hill all day in 85 degree heat, and then go flying down the other side at 40 miles an hour for close to 40 miles in Maui, Hawaii, all while inspiring the riders that came to inspire him???? ........................
I have. I saw it today."

"As I say Aloha to Hawaii tonight I will be thinking of this man, Jim Brown, a firefighter, a husband, a son , a friend and a daddy from Olympia WA. The doctor says he has stage 4 lung cancer that can't be cured. You wouldn't know that from being around him. This week he taught me that cancer can beat up your body, but it can't contain the human spirit, it can't tame the human heart, and it can't define the human soul . As we snorkeled in the ocean together he told us that is when he feels free. The water and the waves make him feel free from cancer and the physical and emotional trauma it can bring. I am leaving Jim here for a few more days in the capable hands of my friend's Carter and Joe. He wanted to do some more snorkeling. Who could argue with that? We could all use some more snorkeling. GForce, Mr. Ron and I will see you all tomorrow at Safeco Field for Dan Wilson's Celebrity Softball tournament. We are gonna raise a million dollars together for area kids.! Until then, Mahalo🤙🏾🤘☝🏽 And Mahalo to you Jim Brown. Holdfast brother! Don"

Maui Crew
 Carter, Myself, Don, Joe, Eric, Anna

West Maui Loop Selfie
My new best buddy Carter Harrington Lt Commander USN

That seems like a pretty great way to come to a close here today.

Prayer Requests:
That Xalkori is effective in not only stabilizing my cancer but shrinking it back down again.
Stabilization of the side effects from my new medication.
Increased ability to exercise and do physical activity.
Restful sleep.
Peace for my family.

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

#holdfast

JB





1 comment:

  1. Hi Jim,

    I hope this finds you well. My name is Joana Mangune and I'm an editor at Health Monitor, where we produce magazines, guides and more on several different health conditions. I'm currently working on a piece for our Advanced Lung Cancer magazine and would love to set up an interview with you and hear more about your story and inspirational tips. Could you please email me at: joanam@healthmonitor.com? Thank you!

    ReplyDelete