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.

Taken Aback and Moving Forward

This past week was a little crazy.

("A little" may be a bit of an understatement,
but we'll stick with it for now.)

To be honest I think that neither Kyle nor I was 
prepared for the violent effects of this new cocktail
of chemo.

It totally pulled the rug out from under us, mostly
Kyle, but since we all tag along for the ride...well,
all of us.

Kyle lost 10 pounds in one week of being sick and
not being able to keep food down.

Joan (his P.A.) called and said, "Kyle we can't have 
you loosing 10 pounds."

(They like to keep some meat on their cancer patients,
it helps make them more attractive)  (wink)

So they're going to try some new "Pre Meds" next week
at chemo.  

(We are on his off week-thank goodness).

Kyle is slowly coming back from the edge of who knows
what and eating again and feeling more like his "old
self".

We keep pushing ice cream and high calorie food
his way and telling him to "Mangia!  Mangia!"
(Italian for "Eat!"  "Eat!")

He (amazingly) is bouncing back from this round
with more information and armed with some new 
knowledge about how to stay ahead of the sickness
and nausea.

I think we were both so blind sided because 
he has (quite literally, and now we see LUCKILY)
breezed through his other rounds of chemo.

Sure, he was tired and run down for a few days,
but nothing prepared us for what chemo could 
actually do to a body.

I guess we count 13 months of "easy chemo" and 
call it pretty darn good.

So even though we were taken aback, we are 
preparing to move forward, hopefully more
prepared.

If not prepared, at least we know what to expect
with this chemo.

And there's our update for today.

This chemo is another bad word I just won't say that starts with a "B" and sounds like "Witch"

This chemo is a B.....bad, brutal, barbaric, vicious,
merciless, take no prisoners kinda chemo.

Well besides the obvious fact that this chemo is
named "5FU" ....it is also a brutal beast of a chemo
on Kyle.

The first few days while it's pumping in aren't TOO
bad, but by Wednesday night he got in his bed
and LITERALLY could not move.  

He was wiped out from exhaustion, he felt sick,
he felt like he had the flu, had been hit by a Mack
Truck, was sick to his stomach, he threw up, touching
and eating cold things hurt and felt like electric
shocks going through him.

And he looked awful.

More "sick" than he's looked since, well, forever.

We knew Round Two of this chemo would be worse, 
but I guess we've been spoiled because chemo 
has never ever wiped him out like this before.

Never. Ever.

But this time it did.

He bottomed out on Thursday and said he felt 
"Just Plain Crappy" (Which for HIM by the way is
admitting a lot!)

His "Just Plain Crappy" is a regular persons
"Death Warmed Over."

After a few days of living in the "World of What 
Regular Chemo Patients Feel Like"...he's making 
a comeback today.

He's sipping a Dt Coke on the couch and getting 
ready to move this Saturday morning.

5FU?  I'm not sure I like you very much.

I'm not sure Kyle likes you very much either.

I am seeing several reasons now why this chemo
was aptly named.  

However, if you're in there blasting some cancer
cells to death?  We've decided you can stay around
for a little bit longer.

Time will tell.

That's our update for today.

Mini Update on the 5FU

A few people have asked how the 2nd round of the 5FU 
went (thanks for asking) so I thought I would give
a mini update, in case anyone is curious.

Kyle had Round Two on Monday up at the Huntsman.

He finished his Oxyplatin at the Huntsman and then they
hooked him up to his man purse with the 5FU to carry
around today and tomorrow.

The BIGGEST difference with THIS chemo and THE OTHER 
chemo are "cumulative effects".

The Gem/Cis chemo combo was pretty much the same thing
round after round after round.  What happened (as far
as side effects) on Day 1 of the cycle and Day 2 of 
the cycle and Day 3 (and so on) ALWAYS happened.

On every single cycle.  No surprises.  
No new things.

There really were no deviations or variances.

Every cycle for 9 months was the same, week after
week.  (Until the "allergic reaction" week.)

We always knew what to expect.  We always 
knew EXACTLY what "side effect" what happen on
"which day", and we never ever deviated.

No hiccups, no surprises.

The thing with the 5FU is that it has a more
cumulative effect on a persons system, meaning
EACH WEEK the side effects add up and can get worse.

Does this mean for sure they will?

Maybe not today or next round, but most certainly 
at some point.

The 3 main "things" that are "the cumulatives"
the Doc's worry about are:

1. Tiredness.  He will get more tired as we go
longer on this chemo.  It tends to "build up"
each round.

2. Neuropathy.  This occurs in his fingers and toes
and hands and feet.  They can go numb and keep getting
more numb, until he looses all feeling in them.  
Not a good thing.  

3.  Cold Sensitivity.  This happens when he eats/drinks/
touches anything colder then "room temperature".
Kyle likens it to an "electric shock" shooting through
him when he does something as mundane as taking a big
drink of cold Diet Coke, or sticking his hand in the
refrigerator and touching something inside.  Pretty 
awesome right?

A last few worries with this chemo are:

4.  Mouth sores. kind of like herpes blisters that 
coat the entire inside of his mouth/tongue...if you can 
imagine how painful that would be.

5. Hand/Feet Sores (See "Mouth Sores" above) only
on his hands and feet.

All of the above are the "Most Common" side effects
on this chemo, it doesn't mean he will get all of them
(although he DOES already have the Top 1, 2 and 3).

The BIGGER THING in all of this, in spite of ANY the side
effects he is experiencing?

Is will this chemo work or not at knocking back
his cancer for a season?

We hope that it will.

Time will tell.

Anyhoo, there is our update.

The stubborn fool is (like usual) doing too much,
not resting enough, and generally being "Kyle."

He amazes me honestly and RARELY complains about
ANY of this.

It is humbling to me how he just keeps pressing
forward for us, for TIME with us and rarely utters
ONE WORD of complaint.

It is inspiring honestly (although he would hate
to be called "inspiring")

Yet he is.

I'm going to try and get him in bed early tonight
so he can get some sleep.  (He had about 3 hours 
of sleep last night since he was all hyped up
on 'roids.)

And that's what we have for you guys today!


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

EDITED TO ADD:

Kyle is really STILL doing amazingly well at this
point, I always wonder what people think when they read.

He has a GREAT appetite.  His weight is still good.
His blood counts have CONTINUALLY bounced back after
each round of chemo.  His liver function tests
IRONICALLY are COMPLETELY within normal range, even
while he's growing tumors in there.  He has pretty
good energy on most days once chemo has left his 
system.  (He's not "old Kyle", but he's definitely
not "dead Kyle")  He plays a pretty mean Mr Mom
while I play "Working Dad" most days and if 
you looked at him, you could PROBABLY tell something
was a little off, but he doesn't look sickly or
yellow or cancery.  (His dark eye circles are the ONE
THING that give the cancer away--he NEVER had these
pre-cancer and that is the ONE THING that reminds
me he has cancer everyday.)

Anyway, I wanted to keep things real, and that IS
real...for the most part Kyle is still Kyle and 
living his life and doing well.  That will change
some day, but for now?

Well is well and we'll take it!

The Storm

I woke up this Easter Morning, exhausted.

To the bone, to the very depths of my soul, tired.

A tired I'm not sure I've ever felt before.

I don't know if it is physical or perhaps it is a
combination of 13 months of emotional, mental, spiritual, and physical exhaustion which penetrates deeply today.

I have been drained over and over on this journey
we call cancer.  

And I have had to reach deeply inside to pull
myself up to keep going over and over and over.

Some days?  It is ALMOST more than I can do.

Cancer is not just a physical ailment that knocks
you down.

It intertwines with every single thing you do.
Every breath you take.
Every waking thought and every moment of your day.

Even when, and especially when, you are living
and loving and trying to forget.

It hangs on, peering quietly over your shoulder.

Breathing quietly down your neck.

Whispering...."I am here, waiting patiently."

Yet, to succeed and to survive, you have to
keep doing what we have been doing...

...putting one foot in front of the other 
and marching forward.

All the while the storm pushes around you,
and through you and consumes you and takes
your breath away.

I told Kyle the thing I envy the VERY MOST
about "normal people" (family, friends, acquaintances)
is their ability to walk away from us and 
simply forget.

It's not their life and so they don't have the
burden of remembering for large chucks of time.

I don't hold that against them...it is as it should be
for them.  The forgetting.

But for us?  The remembering is ALWAYS there.

In every cough, and every sick moment, and 
trip to the doctor, and every ache, and twinge
and new symptom.

The storms rages on for us.

Sometimes quietly, a few drops on a cloudy day.

Sometimes fiercely, listening to my husband
hover over a toilet bowl, it rages.

Today we will prepare a dinner for family.

We will decorate a long table in the backyard
and sit and eat and remember and make new memories.

We will eat and laugh and love.

We will simply be, pushing the storm to the back round
of our minds for a moment or two.

I am thankful for moments of reprieve, even in 
my exhaustion.

I am thankful for love.

I am thankful for my family.

I am thankful for a husband who keeps pushing
onward and loving me and encouraging me, during this,
the hardest season of my life.

I am thankful for children who hug and clean
and help and are simply amazing.

I am thankful for family and friends that have
kept us anchored in this storm, for those that
have not run, for those that have stepped more
closely into our circle of life.

I am grateful for peace in the goodness of 
people.  And the truthfulness of human love.
I am glad that there is love in times of great
sorrow.

Grace shared this beautiful quote which I will
end with today...


“And once the storm is over, you won’t remember how you made it through,
 how you managed to survive. You won’t even be sure, whether the storm is 
really over. But one thing is certain. When you come out of the storm, 
you won’t be the same person who walked in. 
That’s what this storm’s all about.” 

― Haruki Murakami



One thing is certain, none of us are the same 
person we were when this started 13 months ago...

I guess that's what The Storm IS all about.

Happy Easter all.

Remember, it's all about love...and whether you
find that in God, a resurrected Christ, family,
friends, nature, a beautiful sunset or surrounded
by the ones YOU adore?

It's STILL all about love.

Here's to making it through storms and making
memories with those we love.

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