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.