Giving Thanks

I hope that no one will call Child Social Services

on me because I encouraged, and even told, my children to

flip the bird for our family picture in California

this summer.

If you want to judge me?

That's fine.

When your husband has terminal cancer then 

you can make a moral decision about what I've

taught my kids.

I take full responsibility for this 

"bad thing".  

All the other bad things they've learned?  

I TOTALLY blame on their dad. (<<< that's sarcasm, of course)

Or the dog. :)  (<<< that could be true!)

Until then?

Shhhhhhh....

We've decided you can laugh or cry on this journey.

We do both, but you HAVE TO find humor in 

life or you can't survive this.

So on this Thanksgiving Day I am grateful

for humor, and laughter, and life, and

forgiveness, and love, and these 5 hooligans

I get to call "my own" for a while longer.

I'm grateful that Mr Bead Boy is still here

eating turkey with us this year.

I'm grateful for his attitude and goodness

and kindness in the face of a most horrible

thing.  I'm grateful for his love and

compassion and strength that he shares with

me when I feel I cannot go on.

I'm grateful for 4 STRONG, WONDERFUL, 

PHENOMENAL children that have grown up

much too fast this year--but have done

so with grace and dignity and an inner

strength I could have never imagined.

My "mothers heart" is filled with such

deep love for them in all their imperfections

and goodness.

I'm grateful for courage and hope.

I'm grateful for the goodness in humankind.

In case anyone wants to know?

The world is still filled with MUCH more

goodness than bad, more hope than despair,

more kindness than ugliness.

If you want to see it, get cancer!

On second thought--DON'T get cancer!

Just take my word for it!

I'm grateful for dear dear friends, both new

and old, that have lifted us up on our 

darkest days in this year of dark, hard days.

I'm grateful for my own strength to move

forward and do some of the hardest things

I NEVER imagined I could do.  

I'm grateful for the courage to express, 

in word, the rawness

and beauty of this journey.

As hard as it is to write, or even read, I'm

glad that I've captured both the good and bad.

The hard and happy.  The awful and wonderful

parts of it all.

So if I could give any bit of advice to anyone

reading it would be these truths I've learned

in the past 9 months...

1. Forgive quickly.  If it really really doesn't 

   matter?  Let it go.  And even if it does?  Let

   it go anyway.  We ALL need forgiveness.  Let

   someone smarter and wiser than us be the judge.

2. Love.  It's what it's all about.  I cannot

   emphasize this enough.  It's all about love.

   It just is.

3. Judge less.  Guess what?  We all do 

   stupid things.  ALL OF US.  Learn to just 

   appreciate the GOOD things in others around us.

   Hopefully we will get the same kind of leniency 

   in return.  Because we ALL need it.

4. Take time and spend it with the ones you love.

   Tell people you love them.  Even when you don't 

   want to.  You won't be sorry.

5. You may be stronger than you think you are.

   You CAN do hard things.  We are not superhuman,

   or super-anything.  We are just regular people

   surviving a really hard thing.  Because we HAVE TO.

   What other choice do we have?  We cry, we fall down,

   we say we're quitting...but then we rise again each

   day and dust ourselves off and TRY AGAIN.  That's

   ALL that really matters.  You can do it.  Believe

   in yourself.

6. It's OKAY to cry and hurt and be sad and FEEL THINGS.

   As much as we like to think it's NOT?  IT IS!!!

   It's healthy to let those things flow in and around

   and through and out of us.  Holding it all in and

   pretending doesn't do anyone any good.

7. Laugh.  Just laugh.  Flip cancer off and tell it

   where it can go.  It's okay to laugh and find humor

   in darkness.  

8. Back to #2....It's ALL ABOUT LOVE.  It just is.

   Love love love.

Happy Thanksgiving to all of you.

Thank you, ALL OF YOU, who have helped us survive 

2013 so far.  We love you.  We thank you!

You make our world go 'round!

Love,  Kyle Dorien Josh Grace Eliza & Oliva (oh ya, and Ruby!)

Decided

We just returned from the Huntsman Cancer Institute
and our visit with Dr Sharma (who ALWAYS has his
"serious face" on....he's a very serious Doctor,
perhaps cancer does that to you.
I told Kyle it would be a good
face for the inevitable day when we finally get
some bad news from him) 

(again). 

Dr Sharma decided for us.

He said now was a good time to "take a chemo break"
and "enjoy the holidays" (all the while with his
serious face)

Kyle feels good about taking a break.

I, as usual, am torn.

For the big reason that when the years come
and the years go, I will be the one that
will be haunted by looking back and reliving
all of our decisions and wonder about all the
"what ifs".

So a break it is.

Hopefully the cancer decides to "take a break"
for about 6 weeks as well and sit dormant and inactive
and do nothing but soak up some Egg Nog
and Turkey Sandwiches over the holidays.

We would be very appreciative of that fact.

So cancer?   

Take a break!  (said with my most serious
Dr Sharma face on)

Now I'm off to do something normal today...

...like bake a few pies and pretend I don't
have any worries.

Spreading some more fairy dust and looking
out the back window for a few more dancing
unicorns.

One can always hope, right?

We are officially "decided".

Here's hoping....

That's what I've got for everyone today.

Todays Post Brought to You by Dancing Unicorns and Fairy Dust....

Because no one can tolerate only heavy posts, right?

We all need a little Fairy Dust and some

Dancing Unicorns in our life.

We are one week out from Y 90 and Kyle texted me

at work today and said, "I *DO* have beads in there

right?"  "They *DID* put something in my liver?"

"Right?"  "Did they?"

Hard to say since I wasn't in the O.R. and 

I can't see inside his body...but that's 

what we were told.  We got the 10-4 that Y 90

was inserted and completed and A-OK.

We're not sure WHAT we expected, but we DID
expect SOMETHING after this procedure 

and well...

we've got nothing to report so far.  

As in nothing.  Literally nothing.

We feel like we're supposed to be waiting for

some "big ugly awful" pain, or feeling, or liver

hiccup, or pieces of Kyle's body falling out 

through his eyeballs or something.

Or some kind of violent side effects.

Something.  ANYTHING.

So far?  Well, again we've got NOTHING to report.

As in nothing.

We're not sure if "something" is still coming.

Anyone know?

We're not sure if this is a bad sign or a good

sign that we've got nothing.

But nothing is what we've got.

No pain, no fever, no infections, no cancery liver

chunks working their way out of his system.

Maybe the other shoe is still going to fall.

Maybe hallucinations and body aches and

chills and aches and pains and fevers are 

coming.

If so, we will face them when they get here.

If not?  I guess we count ourselves lucky.

In the meantime, tonight we dine on Fairy Dust

with a side of Dancing Unicorn.

We'll let you know how they are.

Anything is better than "post chemo greenish

grayish yellow" that we are used to here at our 

house.

So for now, we will take Fairies and Unicorns

and a good recovery.

Decisions Decisions

Warning:

This is a heavy and somewhat "downer" post.

And I use a bad word or two, which is about
10 less than I FEEL LIKE using today.

So count yourself lucky I stuck with two.

If you don't like to read these kinds of posts,
turn off your computer now. I don't honestly
care what everyone else thinks at this point.
This is my journal, our life, and these are the
facts.  Take 'em or leave 'em. 

This is real life.

Unfortunately it's OUR life when it comes
to heavy decisions.

I've said it a million times, everyone else
gets to walk away and enjoy their life (as it
SHOULD BE) but these things never leave us 
alone. They spend the night with us, they
wake up with us, they tap us on the shoulder
when they think no one is looking.

We can't run away, or medicate away, (well
I guess we could, but it wouldn't solve
anything and it would create bigger problems)
or wish it away.  We don't have the choice
or luxury to turn it off, or banish it from 
our lives.  

We only get to face it all head on, everyday.

Lucky us.

Some days (as I told my friends Carrie and
Susan and Teresa and Heather today) the load
gets really really heavy.

And guess what?  They get it...they all
have husbands with this exact cancer.
They are all (sadly) making decisions every
single day that will impact the rest of 
their lives.

They get it.

I hate that they get it.
-----------------------------------

One of our favorite things about cancer is
how we get to make "life and death" decisions
every few weeks with Kyle's life.

It's wonderful to have the weight of that on
our shoulders.

Ya, right.

So now that Y 90 is complete...we wait.

It takes a few months (via a PET scan)
to see what those little beady buggers
actually did in there.

So here is our dilemma.

To chemo or not to chemo while we wait.

Here is the thing, the troubling thing,
with terminal Stage 4 cancer...if you stop
attacking it, it starts growing and spreading
again.  And well, that's a bad thing.

Obviously.

So while Y 90 is sitting inside the tumor
in Kyle's liver, Kyle still has cancer
that has spread to his lymph nodes and his
lungs.  It's sitting there just waiting
to spread and attack and do naughty things to him.

Y 90 does nothing to either of those spots.
It is a directed therapy attacking the single
tumor in his liver.  Period.  Nothing else.

Which is why you do chemo--it is a systemic
therapy which means it goes IN HIS BLOOD
and hits all the bad spots.

And all the good spots.

At some point, Kyle's body will build up
an immunity to this chemo and it will
quit being effective against the cancer.

In simple terms...this chemo will quit 
working and killing and shrinking this cancer.

The cancer will rebel much like a naughty
teenage child and it will start running around
inside his body, lurking and hiding in other
organs and places waiting to karate chop 
the living daylights out of him.

Chemo resistance already happened with one of my 
new friends, Carrie's husband, Travis.  
His body only took about 4 1/2 months to 
become immune to Gem/Cis. (the chemo combo).

Who knows why?  No one, not even the Doctors.
Who knows why Kyle's Gem/Cis combo is still
working?  No one.  It just is, for now.

And if it had ANYTHING to do with God and faith?
The Roberts would have beat us by a mile.
They have MORE FAITH and HOPE in miracles in their
little fingers than Kyle and I have combined
together in our entire bodies. 

So Travis should be the one with good results,
that's what I'm saying, not Kyle.

If results were based on faith and prayers
and all of that.  They win. We loose.  It's
not even a contest.  I am in AWE and inspired
by their faith.  I am humiliated at my lack
of.  But its how the chips fell, I cannot control
what I cannot control.

So now here's our dilemma.

We have spoken with 4 different doctors and they
are split 2/2 on what they would do at this 
point in the game.

Two say continue on right away with the chemo.
Let it keep killing cancer until the chemo 
doesn't work anymore.  

There is no "magic" time/day/week when this
happens...NO ONE can predict when that will
be.  At some point, we will just see via
a CT or PET that it is ineffective and has
stopped working.

Two doctors say take a chemo break.  Wait
until we SEE the cancer growing again
(which ALL 4 CAN AGREE WILL HAPPEN) and
THEN jump back into chemo.

So once again, we get to roll the dice
and make a decision.

Wait and enjoy the holidays without chemo.

But run the risk of growing and spreading
cancer.

Jump right back into chemo and feel gross
and run the risk of getting to that 
dreaded "immunity" with the chemo.

And people wonder why I'm moody and grumpy
and biotchy half the time?  

Well, there you have it.

I love 'playing God' with my husbands life.

We sort of have the weight of the world
resting (always) on our shoulders.

"Life and death" decisions are not that fun
to keep making, especially when they
relate to your spouse and the father of
your children.

We also have the weight of me still trying to
find a job and health insurance weighing 
heavily on me.

We also have the weight of knowing whether
or not Kyle is approved for Long Term Disability.

No money comes in from that until he is.

Lots of weights.  Heavy shoulders.

It's not like there are unicorns and rainbows
out here waiting to jump and flicker 
through our life.  We have some of the things
that real life nightmares are made of
happening right now.  And none of them
are going away anytime soon.

They are all lumped up into a heaping pile, 
steaming at our feet. 

Don't get us wrong--we have had some really
great blessings and wonderful things happen
during this journey.  Kyle FEELS good.
He looks good.  He can eat.  He can drink
Diet Coke again.  We go out with friends.
We go to movies and run errands together.
Those are ALL GOOD THINGS.  We have had
time, glorious time, that SO MANY PEOPLE
with this cancer DO NOT GET!!!!!

Such good things.  Good. Good.  Good.

But this journey is a heavy heavy load 
that never goes away for us.

We are both feeling that weight today.

We meet with Doctors this week to talk 
about decisions.  And we both feel like
there is no magic answer or fix.

Either way could be great.  Either way
could be a mistake.  Unfortunately there
is no way to know until you've gone down
one path or the other.

And what if the decision we make is the
wrong one?  How do you live with that forever?

The 'what if's' in this game or mind boggling.

We want to enjoy our holidays, spend time
together and make memories...

...because even though no one (especially
me) likes to think about this...this holiday
season with a 'healthy' Kyle, or in fact 
any Kyle at all, could be our last one.

There is just no predicting.

At all.  

This cancer is a mean unrelenting mother...

And even though I talk about it here?
And with my husband?  And with my children?

I hate it.  I hate to think about it
or imagine it or wonder what it will be like.

Life, without him.

Because those are the days when we all fall
apart into puddles dripping on the ground
in heaps of weeping sadness, with our hearts
breaking and re-breaking over and over into
one million tiny shards of glass that stab
and twist and break inside of us like a knife.
The pain sharp and unrelenting, causing us
to gasp for hope and breath and air.

I told Kyle I'm tired of trying to tell 
everyone else to make time.  To make time
and memories and moments.  You know, so
you won't have regrets when he is gone--and
as much as you don't want to hear that?

He will be gone someday, much too soon.

I feel like no one is listening.
I feel so strongly that it needs to be
said, and not only said, but acted upon.

Google Stage 4 metastatic Cholangiocarcinoma
and check out the survival odds.

Not to be blunt, but the 5 year survival odds?

Zero percent with this cancer, and this
cancer that has metastasized.

So, I'm not going to wait holding my breath 
to make time and memories with my husband.

I'm not going to wait until it's too late
and he can't get out of bed anymore and 
make happy memories.

I'm going to seize the day and just do it.

If Kyle beats these odds? 

Fantastic.  Worthy of a full news story 
on the Today Show.  And a free trip to NYC.

But until then....

I'm going to do it so that I don't look
back with regrets (even though I AM CERTAIN
THERE WILL BE WAY TOO MANY!!!!) and think
"Why oh why oh why didn't I make time
for him?"

I've been stern with my children.  I've told
them to do things, to make time and memories
with their dad so that they can have things
tucked away for when he's gone.

It won't be enough.  It won't EVER EVER EVER
be enough.  But, it will be something.

And that is better than nothing.

Decisions.  Decisions.

It's been a son of a bitch kind of day.

A Cry in the Night

(Probably one of my favorite pictures of Josh & Grace EVER!

It screams so much about their relationship without one.single.word.  If you REALLY know them, you will see it.)

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


We love our 2nd born child, who also happens to 
be our first born daughter, Grace Catherine.

Grace is seriously a 1000 watt light bulb.

She is loud and beautiful and funny and fun.

She does NOT know how to whisper. 

Did I mention she is LOUD?

She lights up a room.  She loves to hug
and snuggle and be around people.  She is 
a social child who thrives on crowds.

I cannot tell you how many times over the 
course of her life we have "shushed" her in
church while she is "whispering".

She takes after her father who does not know
how to whisper either.  

She will be 17 in January.

Last night at 11:20 P.M. Kyle got a call.

You know when it's serious HIS phone rings,
it's never MY phone when it's serious.

When it's serious?  They call their daddy.

When the phone rings at 11:20 P.M., a parents mind 
goes to hideous places instantly...

The call was answered to the sounds of sobbing
and yelling and hysteria.

I was in bed sitting up listening while Kyle
had the phone at his ear trying to calm Grace
down.

First thought:  She's wrecked the car.

By now I'm worried and trying to figure out
what's going on, Kyle is trying to talk her down
and no one is making much headway.

Kyle finally said, "GRACE CALM DOWN AND TAKE A
DEEP BREATH AND TELL ME WHAT'S WRONG!?!?!"
in his best stern father voice.

(Did I mention he had Y 90 this Tuesday and
we were trying to sleep?)

After a few minutes of mass confusion, she 
explained that she had taken a "wrong turn"
on the freeway coming home and was now headed
up Parleys Canyon.

It was dark.  It was windy.  She was nervous
and had no clue how to turn around before
Park City, 20 miles away, and come home.

If you don't know I-80 up Parleys, it can be
a pretty intense winding drive if you've 
never driven it.  Let alone at night in
cross canyon winds.  In a minivan with no heat.
In November.

(I'm still not sure how she drove, wept
and dialed Kyle all at the same time...I'm
not sure I want to.)

The good news is that the mouth of Parleys
is 5 minutes from our house.

Kyle told her to stop at the "Ranch Exit" and
he would hop in the car and drive up and
'guide her home'.

This, in a nutshell, is "Typical Kyle."

Quite literally, ALWAYS putting himself before
everyone else.  

Cancer, Y 90 and all.

He pulled on some Superman PJ's and a hoodie
and hopped in the car and drove up to the 
Ranch Exit where Grace was waiting.

She made me stay on the line so no murderers 
would kill her on a dark and windy night.

Because of course, there are ALWAYS murderers
up canyon roads while you're stranded alone in a 
van with no heat on dark and windy nights
in November, right?

I was trying (really hard) not to laugh.
And she was trying (really hard) to stop
crying.

All of a sudden I could hear her voice change
from worried to calm.

"It's DAD!!  He's here!  It's my dad!!"

I let her go and Kyle got her safely turned
around and led her back to the warmth and
safety of her home.

She climbed in bed and snuggled with me
to gather herself together apologizing for
getting lost.

We giggled at the silly ridiculousness of it all
and I shooed her off to her bed.

Kyle and I had a good laugh and a sigh of relief
that both she, and the car, were in one piece.

And then we laughed twice more.

And once more for good measure.

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

This story is a perfect illustration of our 
husband/father.  Is Kyle perfect?  Nope, none
of us are.  Is Kyle the kind of person who
will drop anything for anyone anywhere to help?

Yup, he sure is.

He's not the loudest, or most outgoing
person in the room.  But he's the one that will
help you with anything.  He is selfless and
always trying to put other people first.

Even with cancer.  Even with Y 90.

Today he cleaned the bathrooms.

Last night?  He drove up the canyon to "rescue"
his daughter.  It didn't matter that he was
tired and wanted to sleep.  It didn't matter
that it was late and cold and he really didn't 
want to get out of bed and go.

A cry for help came, and he did what he
does best.  He answered the call.

Without hesitation.

If he could do it?
He would.  And he did.  He always has and
always does.  Always.

He's 4 days out from Y 90 and on Wednesday
morning (the DAY AFTER) he got out of bed to support
my niece who got married.  He said he felt well
enough and wanted to support family. He sat in 
the corner so he wouldn't "radiate" on anyone
and came back home to rest.

Because he's Kyle, and that's what Kyle does.

He gives little pieces of himself to anyone
that needs them.  Without regret and without
asking for anything in return.

Ever.

As far as Y 90?
He has felt well so far with minimal side effects.

Fatigue and liver pain/aching that comes and
goes have been his only real complaints so far.

He is the man with the big big heart and
the radiating liver that will step out and
rescue you if you're lost in the night.

He will answer that call, crazy 16 year old
lost teenagers, during Y 90 recovery, cancer
and all.

Because that is who Kyle is.

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

Anyone want to go for a drive up Parleys?

Grace will take you now.

Or not.

The Story of Bead Boy

We have our Team Kyle Facebook page going strong
and it's a good quick way to get the message out
and update everyone.

So if you're one of the 12 people in the world
NOT on Facebook, here is todays update on Y90.

We had to be at the Huntsman at 7 A.M.
but were both awake at about 4 A.M.

(Needless to say we're exhausted tonight-
although Kyle's on steroids and I'm on fumes,
so basically I'm ready for bed and it's 8:13 P.M.)

We always feel like we have to "hurry up and wait"
at the hospital and today was no exception.

After 2 hours of waiting, they finally prepped,
poked, drugged and prodded and consented and
advised enough to finally wheel Kyle back at 
about 9:15.

At which point, I went to get breakfast as I had
not eaten yet.  (I like to think I was "fasting"
with Kyle for pre-surgery prep....but I wasn't...
but I like to think that I was somehow supporting 
him.)

Kyle's sister Heidi drove up to offer moral 
support and I ate, she knitted and we talked
for 2 hours.  Then she went off to get a crown
on a tooth and I headed back down to Radiology
to see how it was going.

As luck would have it, Kyle was wheeled out
just as I walked in.  He was pretty out of
it, but according to the Doctor the surgery
was "a success".

We like success!  We like Doctors
who use "surgery" and "success" in the 
same sentence.

They then had to wheel him to "The Nuke
Unit" (Nuclear Medicine) to monitor those
radioactive puppies AKA beads flying around
his liver for a while.

Josh calls his dad Bead Boy now.

Maybe this name will stick, it IS kind of funny.

About 3 more hours of laying flat on his
back and monitoring his femoral artery for blood 
loss and the magical beans, er beads, inside
of him and by about 2:30 we were ready to head
home.

"Heading home" involved another half hour
pit stop at the pharmacy to pick up the largest
quantity of drugs I have ever seen for a 
post op pick up and some more "hurrying up
to wait."

He had juice and crackers for breakfast/lunch.

And we finally headed home.

It's hard to know what his reaction to the 
radiation will be until we're a few days out.

And results of the Y 90 (Did it kill the tumor?
WILL it kill the tumor?) will not be known for
some time (probably 2 months or so).

It will take THAT long for the swelling and 
mess inside his liver to all even out.

This is Y 90 for dummies--the Doctors have
yet to call it "the mess inside his liver."

But there you have it!

He's expected to have "flu like symptoms"
and "some pain" over the course of the next
7-10 days. 

I guess we will see to what extent those
symptoms show up.

He also has to be 3-6 feet from us at all 
times for the next 3-5 days.

No sleeping in the same bed.

No kids or dogs on the lap.

Flush the toilet 2X after peeing.

No pregnant ladies nearby.

No leaving the country--they assured us
his radiation would set off alarms all 
over the place.

I'm not sure if that is FASCINATING
or FRIGHTENING...perhaps a bit of both.

Thanks for love and prayers and dinner
and good wishes and texts and kindnesses.

And because, as usual, I am more long 
winded than short....

This is what I've got for today.

Y 90--hopefully kicking some serious cancer @$$!#*

and the story of Bead Boy.