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

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,