Make It Count

Living with terminal cancer teaches you a lot 
of "life lessons".

Some of them are super hard and very painful.

Some of them are really great.

Today Kyle and I were talking about how this journey
is, in many ways, very different then we thought it
would be when we started almost 15 months ago.

First of all, we are thrilled to be here!

15 months with Cholangio is pretty amazing.

Many people don't see Month #15 and for that we are 
so very very grateful.  

The reality of life changes, and the weight of 
cancer, and the brutal reality that Kyle will die
from this ALWAYS weighs heavily on us.

Pressing on our shoulders.

BUT

BUT

BUT

There is goodness too.

We have tried so very hard to make each day count.

Whether that means sitting in the back yard with
our dog and kids just hanging out, or watching a sunset
together, or going to a movie and dinner with 
friends/family or getting in our car and taking
a trip to Southern Utah.... it means living.

It means seizing each day.  It means making the 
most of NOW.  

NOT tomorrow, not next week. 

Just simply now.

Who knows what tomorrow will bring?

We don't.

Here's the crazy thing...

Neither do YOU.

Now I am certainly not wishing for tragedy to befall
ANYONE I know...but you while you may not have a
terminal cancer diagnosis hanging over your head,
anything is fair game in this life and someone you
love could be gone in the blink of an eye.

Hold on to those you love.
Tell them you love them.
Share time and thoughts with them.
Make memories.

Make it count.

No, really really make it count.

Stop and smell the roses,
listen quietly, just Be.  

Simply Be.

But,

Make It Count.

And that's what I've got for today.

I Believe

For English class this semester our 2nd paper was supposed
to be about the statement "I Believe".

It was not supposed to be religious, but rather
something philosophical that we believe in.  A creed.
A knowledge that has grown in our hearts.

Immediately I knew what mine would be. Last night
we went to class and all of us had our "rough drafts"
of this paper picked apart and shredded by classmate
reviews.  It's super fun to have people shred your work,
but that's how we learn.

-------------------

This morning I learned that Cholangio had claimed yet
another husband, father, brother, son, uncle (person).

It was one of the CC wives husbands, our little
Facebook support group.

It rocked my world, another reminder of what is
walking our way.  

Tears poured down my face for this family, and my own.
(Selfishly)

My heart goes out to them in a deep and profound way.

I "get this."

---------------------

So today my family heads off on a mini adventure.

Kyle has another #bucketlist item that needs 
crossing off and we are seizing the opportunity
while we have the time, striking while the iron is
hot, carpe diem, as they say.

-----------------------

I leave you with my Rough Draft essay of 
"I Believe" for your weekend reading, in all it's
grammatical mistake glory.

----------------------------

I Believe…

Cancer changes everything.  After months of doctor visits and unanswered questions about my husband’s health, we finally had an answer that was the last thing we ever expected to hear.  He had cancer.  Not only did he have cancer, but it was metastatic and terminal.  There would be no cure, only palliative treatment to “prolong his life.”  This news took our breath away, it knocked us to our knees,  it shattered the world we once knew into a million tiny different pieces.   Cancer changes everything, this I know.  Here is what I have come to believe.  Cancer has shown me the goodness of human nature, the most pure love of friends and strangers, and it has taught me that there is more goodness in our world than bad.

Often times I think we look around at the world and panic about its state of affairs.  We are told that things are precariously dangerous and that there is more evil than good.  I am not swayed by that argument.  In 14 months I have seen more goodness than bad, more kindness than hate, and more love than not.  As our family wept and held on to one another for dear life in the beginning, a strange thing started happening.  The news of my husband’s diagnosis spread like wildfire via social media and text messages and people started showing up.  Love and kindness started pouring in from friends and family, both near and far.

Our life went from orderly chaos to instantaneous disorder in the beat of a heart.  What once passed for a schedule with things that included work, carpools, and life, soon became lost in the changes that cancer created.  New words, strange chemotherapies, visits to the Huntsman center and making friends with people who had no hair, became common place in the hardest of journeys.

What we saw amazed us.  Instead of being greeted by sadness and despair in the infusion rooms at the Huntsman Cancer Center, we found laughter and friendship and joy.  We met people from all walks of life that had not chosen this battle, the cancer, but when the battle chose them, they fought it with courage and grace.  We met angels disguised as nurses and doctors, people who loved those they treated during the toughest challenge many of them would ever face. 

We connected with strangers across the country via social media, those who walked this same journey.  They laughed with us, they cried with us, and we now call them friends.  There have been countless acts of love and service provided in the way of meals, babysitting children, and grocery shopping when we could not do what were once simple tasks.  There have been fundraisers set up to help us pay staggering medical costs.  There have been texts and phone calls and anonymous gifts left on our doorstep.

Through it all, there have been people with us every step of the way.  There has been enough goodness to take our breath away again, to bring us to our knees and to make the tears flow freely.  Cancer changes everything, but I believe that the goodness of mankind, the kind hearts of human beings and the true love of people outshine any bad we have come across on this journey.  I believe that there is far more good in our world than bad, and this has been proven to me over and over again in my life during the past 14 months.

------------------------

This I Believe.....really and truly believe.

Hope you all have a fabulous weekend and

hold the ones you love a little tighter and tell

them you care!

And that's what I've got for today. 

I've Lost My Voice...

I just don't have anything exciting to share
right now. And I feel like I've lost my writing voice.

And I'm tired.

Remember that exhaustion I talked about on Easter?

Well, it's still here.

Perhaps it's depression.

Perhaps it's 14 months of battle.

Perhaps it's 40+ hours of work a week.

Plus school.

Plus a family.

Plus cancer.

Plus zero "Me" time.

Perhaps.

Who knows?

Somedays it's just hard.

I just wish I could be normal again for a day,
whatever normal is.

But I'm not, and I can't be.

Because we have "The Cancer."

(It's kind of like when old people talk about
having "The Diarrhea"... at least the diarrhea
goes away.)

Someone posted a quote on Facebook the other day
that said "It's not just the person who gets cancer,
it's the whole family."

No truer words were ever spoken.

But I haven't updated for a while and 
(maybe) people are wondering how we're doing....

Are you?

We're still here.

Still kicking.

Kyle had a MUCH better round of 5FU last week.

They adjusted his pre-meds and added things
to help with nausea and he was vigilant and diligent
about taking his anti-nausea pills all week long.

(Loosing 10 lbs in one week and non stop vomit
will do that to a person if they're smart.  Kyle
is pretty smart.)

His tumor marker numbers have gone up again,
which FEELS devastating to us(since it can indicate
the new chemo is ALREADY not working)....

...but our Doctor wants to wait and see on this.

So we have one more round of the 5FU next week
and then some scans to see what that darn old
cancer is doing inside the boy.

The doctor has a theory it could be dying cancer cells
(which sometimes make the numbers jump up a little).

Who knows, only time will tell.

This roller coaster ride we're on is up and down
almost daily.

Kyle feels good enough.  His appetite is
good enough and things are holding steady.

Steady is good, for now.

And I'm sorry this post sounds so depressing
(I just reread it)  Just think of me as Eeyore 
tonight.  Tomorrow I'll be Pooh, or Tigger or someone
else.

But tonight I'm just tired old Eeyore.

And life is not as bleak as Eeyore (me) makes
it sound.  It's just my exhaustion speaking.
And the fact I've written 3 papers for school in 
one day.  And slept really badly last night.
And woke up really early today.  And had a bowl
of ice cream for dinner.  (that should help, right?)
And didn't hit my 3 Diet Coke minimum quota for the 
day today.  And still need to write and read for
two more hours for school.  And take a shower.
And try and sleep tonight.  And eat a better
breakfast tomorrow.  

Tomorrow I'll find a better voice with which
to story tell.  But today you get Eeyore because
I've lost my regular voice.

And that's what I've got for today.