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





Thursday, March 16, 2017

Stability, Depression, Great Things..

Wow, it has been a long time since I updated my blog.
I would say the good thing is that I have been living life so hard, that I havent had time to stop and write about it.

Clinical Picture:
My status remains the same..... last CT scan was in January and my cancer remains minimized and stable.  After the first of the year we switched to a 28 day cycle instead of 21 days, the fact that my Dr was open to this is evidence in his confidence with regards to my stability.  This change will give me an extra 7 days in between treatments to recover and try to regain some "normalization" to my day to day life.
We are also extending the time between CT scans to 4 months, I guess the less frequent I have to have that radiation exposure the better in the long run.
I continue to be a living miracle and I am literally still on first line chemo, 29 rounds by the way.....that is how many I have had at this point.  Big #30 goes down on March 29th.  I have come to detest getting chemo, I love the people at SCCA and I love the fact that I am beating the cancer down, but the weeklong after effects really suck ass.
I continue to be able to function at a pretty high level with regards to quality of life, I do find that my general endurance is lower and it seems to take more energy to do many things than it should.  This causes me to run many things through my "Time, Energy, Resources" model when I choose to take something on.  In the end I still choose to do some things that can be quite taxing but I always try to consider the cost/benefit of the action and shoot for the beneficial things.

The Dark Passenger:
You may, or may not, know that I have struggled with depression along the way in my life, this predates my cancer diagnosis.  In the past I sought out counseling and took medication to help keep things in check, this is a personal thing that I never really shared much about, but I am coming clean with you here.  
I suffer from depression.
Guess what happens when you already suffer from depression and you are diagnosed with a "terminal" illness......engage tailspin.  
Some of the struggles and the crisis early in my diagnosis was connected to my battle with the dark passenger, some of my daily struggles right now with regards to my disease management include fending off the depression.  Most days I can keep my chin up and keep throat punching, but sometimes the "Bad Dog" creeps in and makes things difficult.  Several weeks ago I woke up in the am to go to work, family was already off to school and work, I lay in bed paralyzed with anxiety, the "Bad Dog" wanted me to stay in bed and feel sorry for myself, it took everything in me to get out of bed and move on with my day.  On my way to work I called my therapist, by chance... and divine intervention he told me if I drove straight to his office he could see me.  What ensued was a tearful hour of unloading and in some cases unintelligible blathering.  But.....I unloaded and was able to regain some perspective and hit the reset button.
I am not ashamed to admit that I suffer from depression, I see a therapist and I take medication to help mitigate it, that is who I am, take it or leave it.
Feed the "good dog" in your head, let the "bad dog" starve.
On to better things....

Living life hard!!!
With regards to living life as hard and full as I can, the 2 biggest highlights over the last few months have been a family trip to Mexico and a Backcountry Snowboard trip for myself in British Columbia. 

In late November Regina and I loaded up the brood and headed off to Cozumel, Mexico.  It was a big deal for us to pack up and take this on but I have been feeling pretty well and it seemed like the right thing to do.  We had to pull the kids out of school for a week to pull it off but it was well worth the sacrifice.
Our days were filled with relaxing, sleeping in, lots of snorkeling and swimming, great food, and amazing family time.  I came home from Mexico feeling the best that I have felt since before my diagnosis in May 2015.


Swimming with the dolphins in Mexico

The holidays were pretty mellow but included a family ski trip up to White Pass, once again great family time and activity.

Stellar days at White Pass

Right after the new year I had the really fortunate opportunity to go on a back country snowboarding trip out of Nelson BC at Baldface Lodge.
This is big, serious backcountry riding that is accessed  by flying into the lodge on a helicopter and then all of the days are done out of a snowcat.
This trip really fed my soul and recharged me, it was taxing out of the mountain, but in that really satisfying way.  Great evenings were spent in the lodge visiting with friends old and new.  There is never a lack of very high quality people at Baldface and I always walk away enriched by the experience and the people.  A big shout out to my friends Jeff Pensiero and Nate Mendel for bringing this together for me.  Baldface Footage
Big Mountains feeding my soul....

Mid January brought a trip down to LA and a gathering of some of my best friends in the world to attend Anaheim Supercross.  My buddy Gus got us connected with Team Honda and we got to do the races in a very VIP type of manner.  The trip also included a visit to the recording studio to see my buddies in the Foo Fighters which is always fun.  I am so fortunate to have such high quality friends and supporters in my life.
VIP with Team Honda
Some random dude holding fast...
Our family is settled into the hum of life that is living with cancer.
We look at it as chronic disease management, and we shape ways to live around it and try to maintain a good quality of life.  Weeks are filled with soccer practices and matches, Gymnastics, Dance Team, Volleyball, occasional ski trips, and oh yeah...Regina and I are both working full time.  It is a full and rich life and we try to squeeze and cherish each moment.  We intend to be in this for the long haul, I have friends with my same disease that are 10+ years past diagnosis.
I have graduations to attend, weddings to preside over, and grand babies that are gonna need to be taught how to ski, I have a lot left to do in this life.

In the "In over my Head" department:
For some reason I thought it would be a good idea to sign up for the Scott Firefighter Stairclimb.  This is an event that I had done many times over the years.
It seemed like a good fit, raise some money for LLS, challenge myself, inspire other cancer patients, these all are great ideas and reasons to do the climb.
The problem is that in my head I am still the same old guy, but the fact of the matter is that I have toxic chemicals coursing through my body to keep a killer at bay, the side effects of these toxins are profound and I have no control over them.  As I mentioned before my endurance is low and getting any type of consistent exercise is difficult.
By the time we got within 8 weeks of the event I knew that I had written a check that my body was gonna have a hard time covering, but I felt as though I couldn't back out.
5 guys from the department made the commitment to climb with me on the day of the event and make sure I got to the top, additionally I was able to climb with a special battalion of cancer survivors.  
I can do this, how bad can it be?
Umm....pretty bad.
In the end we got there but was not pretty.
Actually......to be honest it was beautiful in a twisted suffering kind of way.
Rather than rewrite it all I invite you to take 10 minutes and listen to my description of the climb during my visit to "The Ron and Don" show.
The Stairclimb Story
I think it does the most justice for the experience.
The crew that got me to the top
Here is one other project we have been working on.
Isabella's College Recruitment Video

Thanks for taking the time to check in.
I am a Warrior.
I am a Thrivor.
I am the Exception.
I choose the miracle.

Prayer requests:
Continued disease stability.
Increased endurance and stamina.
Total healing from Metastatic Adenocarcinoma.
Restful sleep.
Peace for my family.

Warm Regards,
Jim
#holdfast