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.
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.
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?
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'.
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.
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.
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.
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.
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.
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.
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:
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:
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| 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
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| Jim's friend Linnea captures the essence of our situation |
