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






Sunday, November 6, 2016

A fortunate man, milestones, mentorship.....

Fortunate
ˈfôrCH(ə)nət/
adjective
  1. favored by or involving good luck or fortune; lucky.
    "she'd been fortunate to escape more serious injury"
    synonyms:luckyfavoredblessed, blessed with good luck, in luck, having a charmed life, charmed
    sitting pretty

    I am a fortunate man, by definition.
I have lived a prosperous life with regards to life experience, family, financial means, work, community, and all of the things that have come my way in 49 years.
Then there is cancer, of course this is not a metaphor like the cancer our election has become...
We are talking about Stage 4 Lung Cancer, the real deal.......
We are talking about a 5 year survival rate of 3%.  
We are talking about a cancer that kills more Americans per year than Breast, Colon, and Prostate cancers combined.  
This is serious shit.
Yet...I am still a fortunate man.  
Things could always be worse and I never lose sight of that.
I'm upright, I'm working, I'm going to soccer matches, I'm active, I'm Climbing Mountains, I'm Dirt Biking, I'm living life with Stage 4 Lung Cancer, and that is how it is....
Despite the best of dreams that I have at night, I still wake up to that reality every day.
Cancer is NOT/NEVER a gift, but the fortune that has come my way after being diagnosed is immeasurable in its volume and depth.


Milestones:
My 49th birthday this year(Nov 7th) falls on another milestone.
Exactly 18 months ago to the day I was told of my cancer by Dr Redman.
We all know what followed... but in short I am equally happy about both milestones.
I also got to see Isabella's junior homecoming last week. 

So what is going on Clinically?
Over the past month I have had several key diagnostic tests done.
I had my first brain MRI since diagnosis and it was clean.
This was a big relief because Lung Cancer FREQUENTLY metastasizes to the brain.
My current treatment seems to be staving this off.
Every 9 weeks I have a neck/chest-and/pelvic CT scan to closely monitor what the status of my disease is.  Although the trend has been positive on these scans I always suffer from some level of Scanxiety....  this time around I had been feeling more tired and run down, so my confidence was a little bit on the low side.
Well......I continue to be the EXCEPTION, the cancer is minimized and stabilized, in fact there continues to be even the slightest disease REGRESSION.
Days like these are joyful but there is also a shit-sandwich to the deal....
Because right after I get good news like this, I march upstairs to the infusion bay to have the life giving poison of chemotherapy pumped into my veins, knowing very well it is keeping me alive, but at the same time is gonna kick my ass for the next 5-6 days.
I have really come to dread these treatments.  I have had 25 rounds of chemotherapy, that seems crazy to me, and the nature of my disease dictates that there is no end in sight, I will just continue to do the chemotherapy.
I am talking to my Dr about switching to a 28 day cycle instead of 21 days after the first of the year.  The prospect of 7 more days between chemo sessions is very appealing and I feel like I have arrived at a point of change in order to sustain durability and quality of life.

Mentorship = Post Traumatic Growth
Recently I was having a pretty rough day, I was generally feeling overwhelmed and emotional. I was on the verge of tears for no apparent reason, all while trying to put in a day at the office. My friend Kelly Fox(IAFF-D7VP) came by the office for a visit and told me about a brother firefighter from Great Falls, Montana named Jason Baker, whom had a new diagnosis of lung cancer.  Kelly said he would give my contact info to him so that Jason could contact me.  
I thought back to my first week of diagnosis and I realized I wouldn't have had the humility and the self awareness to reach out.  After putting more thought into it I called Kelly and said I wanted Jason's number because I WAS going to reach to him.
So I called Jason...as we spoke I was taken back to the same place that he was in.
I tried to tell him all of the things that I wish I had known in the early days of diagnosis.
One of the biggest things I wanted him to hear is that WAS NOT a death sentence, I was given the same news 18 months ago S4 Lung Cancer, but here I am today, not just surviving but Thriving!!!!  Over the past couple of weeks Jason and I have been in touch pretty frequently, he is learning the lay of the land with the specifics of his diagnosis and laying out a game plan.
Jason told me that our conversations and reading my blog helped him to awaken the Warrior inside that he needed to fight this battle, that made me feel really good.
We all hear about Post Traumatic Stress and PTSD, but there is a thing called Post Traumatic Growth and that is what I have achieved in my journey with cancer and by doing things like by reaching out to Jason.  Post Traumatic Growth
Thank you Jason, lets do this together.

Other Cool Stuff:

At the end of September I took RRNW riders Scott Funston and Calder Wood to Connecticut to race in couple high profile Junior UCI CX races.  It felt really good to being doing something that has been such a large part of my life over the past 16 years.
East Coast 2am Nutrition Program
Bella continues to amaze me with her skills on the soccer pitch.
Her team posted a pretty great season for a "rebuilding" year.
Bella was the "heartbeat" of the the team according to her coach.
She closed out the year by being awarded First Team All League Evergreen Conference for the 3rd year in a row.  Additionally she earned All Academic Honors.
Asskickers Inc.....
Last Friday I hatched a plan to go climb Mt Ellinor so I reached out to a couple of buddies in an incredibly last minute nature and got them to give up a day of their lives to chase my passion.
Ellinor is NO JOKE, It is a pretty serious climb and I take pride in the fact that I continue to challenge myself with adventures like this that many "healthy" won't even do.
That said.....It really challenges me.  Sumiting Ellinor video.
And then when I got there, an amazing surprise awaited me.
There was 1 other person on the summit when we were there....
Heather Johns who is currently fighting Stage 4 Breast Cancer, was there.
Holy Shit!!!!  What an amazing and inspiring experience.
So awesome to run into to others who refuse to lay down.
She is training to climb Mt Rainier, so amazing.....
Asskicking Cancer Patients on top of a Mountain
Royce Smith and Kevin Bossard escorted me to the top.
Well tomorrow when I wake up I will be 49 years old.
I am celebrating the day by going dirt biking, having dinner with my family, and getting a new Tattoo....because that's how I do shit....there may be some Jagermeister consumed along the way as well.

My continued prayers requests:
Restful sleep.
Continued disease mangament.
Complete healing from Metastatic Adenocarcinoma
Peace for for me and my family.

Lots of cool stuff coming up for the Brown brood, stay tuned.

Thanks for checking in.
Hold Fast.
Jim











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
NYPD Love
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,
Jim
#holdfast









Friday, July 1, 2016

Progression Free Survival-FAQ's

Progression Free Survival!!!!
I just got results back from my most recent CT scan.
My cancer continues to be stabilized and minimized!!!!
The fact is.... my measurable disease shrank another 1.2 mm since my last CT scan.
Dr. Eaton continues to be pleased with the results, we are thrilled.
This CT/Scan and Chemo Round #19 marks I full year in chemotherapy.
It has been a hard year and we have had to stay sharp, combativeness has been the order of the day, everyday....  It takes a toll.  We are looking forward to soaking in these recent results and cutting loose to do some living this summer.  Thank you to all of our supporters that have gotten us to this place, it feels good to be in front of this thing.  Take a deep Breathe.....


Frequently Asked Questions(FAQs)
I get asked a lot of questions about my disease.
I thought I would hit a few of them here....

How many more rounds of Chemo do you have?
My chemotherapy schedule is indefinite. 
I will continue to get the current treatment until it is no longer effective in keeping the cancer at bay. As of June 23rd I have had 19 rounds of chemotherapy and I have been in treatment for 364 days, basically 1 year now.  If/When the current line of treatment stops working I have a second line plan all lined up, planning ahead as to not be put into "crisis" mode again.

What does Stage 4 Metastatic Cancer mean?
It means that the cancer originated in an organ and the cells have spread to other parts of the body and set up shop.  In my case origin was Lungs, and the cancer spread to my lymph nodes and my bones.  
It is because of this, that my only treatment option is chemo. 
Chemo can approach it systemically- radiation nor surgery are options. 
Think about applying weed killer to your lawn vs just pulling weeds.
The weeds you pull (radiation/surgery) will likely grow back, but the area you put the weed killer (chemotherapy) should remain weed free.  Get it?

What is Remission and when will you be there?
It is a term that gets thrown around a lot.
In layman's terms, people interpret it as that the cancer has gone away after treatment.
It is NOT a term my oncologist uses; my cancer is considered un-curable.
Therefore, the expectation is that I will never be "in remission".. 
But miracles happen and I haven't discounted that.

What is No Evidence of Disease(NED)?
It means that with diagnostic tests you appear to be cancer free: there is no measurable/observable cancer. Typically, this is associated with still being in treatment.  Because of the complex nature with the spread to my lymph nodes, my Dr. Eaton says I am close but will probably never be true NED.
But...per my last results, I am ever so close, and still strive for it.

What is Progression Free Survival (PFS)?
THIS is where I am.  After 4 rounds of super burly carbon based chemo last summer and 15 more rounds of "maintenance", my tumors have shrunk. 
They are minimized and stabilized.
There has been no disease progression since I started chemo exactly 1 year ago.
This is the goal with the management of my disease, and right now it is going quite well.

What are the side effects of chemotherapy?
During the first 4 rounds it was extreme fatigue, nausea, weakness, near fainting, and anemia.  I also was having cardiac arrhythmias that were partially cancer related and partially side effects.  On my current regime it is low grade fatigue, nausea, and loss of appetite.  Just generally icky feeling.  This lasts 4-5 days, by day 5, I am ready to go back to work, by day 6 there seems to be a switch flipped and I feel almost normal.

Why haven't you lost your hair?
Chemotherapy has become much more specialized and targeted that in many cases like mine, hair loss does not happen.  Chemo attacks fast growing cells like cancer, it the past it didn't discriminate and hair loss happened.

Why don't you look sick? 
Part because of my miraculous response to treatment, part because of the specialized nature of my chemo, part because at baseline I was a pretty healthy fit dude, and maybe mostly because I am a strong stubborn son of a bitch with a pretty stout mindset at fighting this.

Fun Stuff:

I recently was asked to be part of a panel by the Bonnie J Addario Lung Cancer Foundation.
I flew down to San Francisco and met some great people while sharing my story.
Here is the presentation, fast forward to minute 48 to see my interview.
PT perspective panel

Bella and I got to attend a Copa Americana match between the USA and Ecuador.
It was one of the most exciting matches I have ever seen, and USA came away with the Victory!!!!
Go Team USA!!!

For Fathers day we went out the the Olympic Peninsula and hiked Lake Lena.
What a great day out for the family, followed up with an awesome Fathers Day dinner.

Lena Lake

All of the brown girls are out of school for the year.
Phoebe has attended Black Lake Elementary from K-6 and will moving on to TMS for 7th grade.
We celebrated her moving on to middle school at the 6th grade tea.
Bella will be JR this coming year at Black Hills HS, and Lilly is gonna be a 5th grader at BLE.
6th Grade Tea

Thanks for checking in and for the continued support.

I am a warrior.
I am a thrivor.
I am the exception.
I choose the miracle.

Prayer requests:
Complete healing from metastatic adenocarinoma.
Peace, rest, and rejuvenation for my family.
Good sleep.

Thanks,
Jim
#holdfast

Wednesday, May 18, 2016

... but I just saw pictures of him climbing Mt. Ellinor



My bride and Rock, Regina Brown is the guest blogger today.
She spits the truth, no candy coating, no bullshit......

I haven't posted much publicly about the challenges of last calendar year of our life.
The daily struggles, pain, and hardships.
Jim does an amazing job of articulating our new normal and showing the positive aspects of our battle.
I have wanted his words to be enough.
 

On social media I have chosen to focus and reveal my gratitude. There are so many people I am grateful for. The generosity of others' time and resources has deserved the air time.
I am acutely aware of our silver linings & they are plentiful.
 

All of this said, I feel the need to come clean.   
It has come to my attention that there are some folks who think that things must not be 'that bad' ... 
I mean, after all, weren't there just pictures of Jim climbing Mt. Ellinor? 
Apparently. some people have been critical of some of the resources that have been gifted to our family. 

Because....... Jim seems 'OK'. 
He has all his hair. 
He still works full-time (around his chemo). 
He doesn't look like he's sick.
He rides his bike.
He snowboards.
He climbs mountains.

To those of you who may have had some of these thoughts, I understand. 
I don't understand because I have been in your shoes.
I just understand human nature. 

Here's the thing: 
There is so much you don't know about our monthly chemo roller coaster. 
You don't know because we shield you.
We hunker down and push through the hard stuff. 
We are neck deep and are simply trying to survive. 
Truth be told, I haven't shared much of what I am about to share with you even with my close friends.
I haven't had much opportunity to spend time with them in person to share these things.
 

We actually have some really good days. 
These days are numbered... But they still come. 
They typically fall 14 days after a chemo treatment. 
Jim tries to plan any activity that might be physically taxing(bike rides, snowboarding, hiking) for the 3rd weekend after his monthly chemo (days 16 &17). These days are gifts. 
They are such gifts, that Jim feels the burden and drive to make the absolute most of the truly good days and take pieces of his life back.  They are small victories that help fuel the fire of survivorship.
The double edge of that sword is that he pays the price for any truly taxing activity he takes on. 
If it is as taxing as Mt. Ellinor.... The price tag is steep and his whole family pays the price for the ensuing days. 

Basically- for the last year, each month is broken down into chunks.
Jim has chemo every 21st day on a Thursday. 
He chose Thursday to ensure that most of his recovery time falls on days that he was already off from the Fire Department so as to minimally impact his job and his ability to function as Captain of EMS.
It takes him 5-7 days to feel close to himself after each chemo. 
Five days if he takes it really easy immediately following chemo/ Seven days if he participates in typical family events (track meets, birthday parties, soccer games).
Then he slowly rebuilds for the next two weeks... In preparation for the next round of chemo.
 
He gets one week a month where he is at his 'best'.... His NEW 'best' = 70-80% of pre-cancer Jim. 

This is our life, for as long as this specific chemo train lasts.
It could be 6 weeks it could 6 years, it all depends if the treatment keeps working, when/if it stops we move to another line of treatment.
We have been told that the 5-7 day recovery will begin to stretch to 7-10 days, and so on. 

What this looked like last weekend (post chemo) was that Jim tried to participate in family and friend life (birthday parties & track meets)Unfortunately this activity dug him into a hole. 
When he is in this post chemo deficit he is tired, physically uncomfortable, nauseated, and irritable. 
I try to keep the house as quiet and peaceful as possible. 
This usually means we leave for chunks of the day. 
This tears me in half because I want to be there with Jim so that he is not alone... but I have to remove the younger girls from the house so that he can rest and they aren't constantly being 'shushed'. It is a tightrope. 

This last Saturday, he couldn't even 'rally' to take pictures of his daughter before prom.
It was hard to tell Bella that her dad wasn't going to make it for pictures.
  We had a friend's daughter meet me and she took amazing photos in his absence:
Prom 2K16 courtesy of Haley Stewart
He was laid low Sunday and Monday too. Here we are on Wednesday (today) and I am seeing glimpses of 'Jim' with a little more energy.  He is on the upswing. 

Here's the truth of Jim's chemo train... He's actually really fortunate.
So many others have a much more physically taxing road. 
So many others have it much worse, we know this.

Our reality: 
We are told that Jim's cancer will not be cured. 
He is not a " 'survivor' - he is SURVIVING. There is no 'life after cancer' there is just life WITH cancer."  So we are doing our best with this life with cancer, fully realizing that each day is a true gift.

Though we don't talk about statistics- We know them:
Stage IV Lung Cancer has a less than 5% -5 year survival rate. 
Jim is doing everything in his power to defy these odds.
As you can imagine- all of this takes an emotional toll too. 
On Jim. On Me. On all of us. 
That is entirely different and more difficult conversation than what I am sharing with you now.

Here is where I quote one of my favorite movies- Shawshank Redemption: "I guess it comes down to a simple choice, really. Get Busy Living or get busy dying. That's Godd*mn right"  

So, we get busy living.

We have a very busy life with three children and two full-time working parents with no family in the area.
 The girls and I have to pick up the slack when Jim is really tired, and without family we have had to rely on the kindness and generosity of our community. 

I still commute daily and I am gone 9-10 hours a day:
A demanding job as a school counselor supporting children in their crisis, grief, and life events. 
Jim is working as many hours as his body allows, but very close to full time:
A Captain at the Fire Department helping shape Medical Services in new and innovative ways including Cancer Prevention.
Each of our daughters has activities 2-3 evenings during the work week and more on weekends:  Soccer, Track, Acting Classes, Gymnastics, Youth Group, etc.

Laundry and dishes still pile up. 
Meals still have to be 'pre-meditated' .
All the things we ALL deal with. Nothing special. Just life.

So now you have a fuller picture of our struggle... not just the highlight reel. 

We have asked for very little from our community.
 
All that has been given has come unsolicited.
It has humbled and shocked us.
We are forever grateful.

We feel the love. 

All Best Things
Regina

Jim's friend Linnea captures the essence of our situation

Thursday, May 5, 2016

1 year.....with a little help from my friends...

1 Year from Diagnosis:
May 6th, 2015 I got the phone call while heading to a medical conference in Idaho.
It was the call that changed my life forever,  Dr. Redmond seemed to stumble on his words as he told me, I think he was as blown away as I was.
"It's not what we thought it was...... you have Lung Cancer".
Nothing will ever be the same.
My head was spinning..... anger, sadness, confusion.
How the fuck can I have Stage 4 Lung Cancer?
But I do...and that is the new reality.... that is our story.
I am now at my 1 year anniversary of diagnosis (cancer-versary).
I prefer to refer to it as my first anniversary of "Survivorship"...
There are those who thought I might not even be here at this point, the fact that I am here defies the statistical odds for my disease.  I am officially a cancer "Survivor and Thrivor".
There is no known cure for Stage 4 Lung Cancer, I still hope and pray for the miracle that I will be completely healed, but in the meantime, I have wrapped my head around disease management.
I am a better person than I was a year ago.
I feel and accept emotions fully.
I love more deeply.
I cherish each day.
I have more empathy than I have ever had.
I do not take my loved ones or friends for granted.
I am humbled.
I ask for help when I need it.
I accept help when I need it.
My list of shit the "really" matters has gotten pretty short.

Clinical Information:
2 weeks ago I had my most recent CT Scan.
I had anticipated good results based on the fact that I had been feeling quite well.
I was not disappointed....the disease is stable and has shown no progression whatsoever.
My baseline at the beginning of treatment was 7 sq cm of disease, I am now down to 1.6 sq cm, and have had this stabilization for over 6 months.  There is no active disease in my lungs, only appears to be cancer left in 1 lymph node, and the disease that has spread to my bones shows itself to be stable and continues to show evidence of healing.
Dr Eaton used the words "exceptional" and "miracle" during my visit with him.
Bam!!!!  I am #winning!!!!!
On the day of the CT scan I also bagged Chemo Round #16.
The course of treatment will remain:
Current cycles of Alimta (chemotherapy) every 21 days indefinitely.
If/When the Alimta stops being effective the most likely next line of treatment will be a drug called Crizotinib which is a targeted therapy for my ROS1 genetic mutation.
Continue kicking Ass and taking names!!!!

Help From My Friends:
I truly believe that I would not be where I am (and we are) without the strong and solid support from our community.  I cannot say thank you enough, I cannot return all of the goodwill that has been put forth to my family.  I resolve to continue to be a better person and contribute in a positive manner to this world.  The photo below captures the spirit of the support we have received.
In this picture are 2 of my best friends Gus Bayle and Billy Cochran pushing me up the final climb back into Laguna Seca a couple of weeks ago at the Sea Otter Classic 50 mile Coastal Gran Fondo.
When we have faltered or struggled, our friends and family have pushed us up the hill.
a little help from my friends...
Fun Stuff:
-First week of April I closed out the snowboard/ski season with an amazing day at White Pass with Phoebe and Lilly, they made their first hike up Hogsback Ridge and got to see some amazing things.
Hogback with the grommets
-A couple of weeks ago I had the privilege of traveling to Monterey, California with the Rad Racing NW kids to attend the Sea Otter Classic.  I got to connect with lots of friends, and received a lot of love.  While I was there I took my revenge on Cancer and bagged a 50 mile Gran Fondo.
Billy and "The Dude" at The Otter
Never a complete cycling trip without a "Worthy Sighting"
Rolling the coast with Jeremy Powers (J-Pow)
-While on the trip I got to visit the Bonnie J Addario Lung Cancer Foundation.  I got to thank the staff, and Bonnie herself for the solid work that they do on behalf of Lung Cancer patients.
Bonnie J Addario, Lung Cancer Survivor, Hero
-My good friends at Giro had a surprise for me, they have produced a limited edition "Hold Fast" cycling glove in my honor.  Read all about it and order a pair here: The Athletic.
Thank you Chris Distefano, Eric Richter, Jim Heeney, and Jeremy Dunn.
Love from Giro
-I have set about being designated as "Fit for full duty" again at the Fire Department, it will be a bit of an undertaking but I am dead set on taking that portion of my life back.  The goal is by July 1st.
-One of the major projects that I have the privilege of working on currently at OFD is implementation of a cancer prevention program for my brothers and sisters.  Clearly this is a project that hits very close to home and I am honored to be working towards making OFD a safer place to work.
A good day at SCCA
Thank you for taking the time to catch up with us.

My prayer requests remain simple:
Continued disease stabilization.
Complete healing from Metastatic Adenocarinoma
Peace for myself and my family.
Restful sleep.

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

Warm Regards,
#holdfast

Jim