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

6 comments:

  1. All my love and concern, headed your way, J and R. XOXO

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  2. Thank you for sharing the truth of your experience. The courage and inner strength it takes for each of you - Jim, you, each of your daughters - to get up and go at it another day with the highest intentions is astounding and exhausting. Holding you each in my thoughts and prayers. I'm honored to know Jim and to learn more about your journey together. Warmly, Leslie Demich

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  3. This is a great post Regina. So many people don't get it (how could they? I didn't have a clue before I lived it either). It's up to us to educate. Thanks for your help on that front!

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  4. I want you to know that I literally think of you guys every day and wonder. just. how. the. hell. you. do. it. I wish I could gift you all the money you'd need to both be able to quit working and just do everything else, which in itself is too damn much. All my love. -Wendy

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  5. Thank you Regina. I know strong you guys are. It took a lot of courage and love to share this with us.

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  6. Regina,

    You are brave. You are strong. And you are enough.

    You don't know me, but I've sent prayers and thoughts your way every single day since I heard about Jim's diagnosis. I haven't reached out because I know your hands are full. But I'd love to have coffee if ever you so desired.

    I admire your honesty, and I honor your transparency. Yet I know that in this you still protect us from the truth. As the wife of a man who is 100% combat disabled I can relate to just a fraction of what you experience. I can't pretend like you feel exactly like I feel, but I know you DO feel. I hid my pain so not to make his deeper, pretended for the kids, endured surgeries and treatment and side effects with a smile, felt guilty for feeling like I needed a break, didn't take a break because I didn't want to leave him, didn't attend every procedure/appointment because someone had to take care of the kids or I had to go to work. Unable to visit in the hospital because taking toddlers certainly didn't help recovery. Celebrated birthdays in hospital rooms and Christmas around his makeshift bed on the couch. I took him with me to a work event (United way lunchtime fundraiser at the fire station ironically) only to have a senior co-worker say "I thought you said he has to wear a prosthetic - it looks like he's walking just fine." I guess this person couldn't understand why a man might not want to use a cane in front of everyone at my work; and that day was a good day. Yeah. Human nature is APPALLING at times.

    I'm SO THANKFUL for the support you enjoy because it makes life a bit less taxing for all of you; but I know it does ABSOLUTELY NOTHING to change your reality. And for that reason, I pray.

    Bless you all and may you continue to CLIMB MOUNTAINS!!!!

    -c

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