Running Errands

One of my favorite things to do with Kyle is to run errands.

I know that may seem like a stupid thing, but to me it's not.

For many years we have loaded up the car now with just ourselves.

During the cold months, first it's a stop at the Holiday Oil for
some hot chocolate (they have the VERY best hot chocolate!)
or the drive through at McDonalds for a large $1 Diet Coke
to share.

We have a few hours all to ourselves, alone, talking, 
sharing stories, tales of the week, laughing, figuring
out what to do with our children or what to put on the family
menu for the week.

It's time that is rewarding and good and fulfilling.

It's US and it's alone.

Yesterday Kyle told me I needed to do a blog post 
on what it's like to watch the person you love 
decline with a terminal illness.

He told me to be honest.

Well, quite simply the whole post could be done in 
these two words:

IT SUCKS!

But then we ran errands and this time everything was different.

But it has been for a while now.

And today I watched my husband, like to do quite often
now,  and I wept and wept.

And it still sucks.  Because he's not "Kyle" anymore.
He's turning into someone else slowly right before my eyes.

And I don't like what I'm seeing.  It breaks my heart.
But there's no way to stop it, or change it or make it go away.

Even though we got "goodish news" at the doctor Monday,
in truth very little has changed.

Very little has changed.

The world goes on spinning, everyone goes on living
and we stay stuck in this hell we call cancer.

I'm so tired of cancer.

As is he.

So very very tired of cancer.

I would give anything to just run far far away from
it for 24 hours, but I can't and so I wake up and just
keep moving forward.

The very best that I can--which I know isn't very 
good, or even nearly good enough--but it's all I have
inside me, and so I do it.

As we ran our errands this weekend Kyle, the new Kyle,
was so tired he could barely get through Costco without
passing out.  He was too tired and weak to keep going.
He leaned on the cart, his yellowish eyes cast down
and his quiet voice telling me he didn't feel good.

You see, he's weak.

He throws up a lot lately and isn't super hungry.

He coughs too.

He has a hard time sleeping.

He lost weight, way too much weight.
Which is good if you're on a diet, but bad if you're 
on cancer.

He's always cold. 
One night last week I founding him whimpering on 
the bathroom floor in front of the heater vent, 
huddled in sweats and sweatpants
and two pair of socks--wrapped in a blanket--begging
me to turn up the heat so he could just get warm.

He's always cold to the bone.

He has to drain ascites "out" and do IV lines here at
home "in"....to try and balance to fluid loss, and 
low sodium and dehydration.

He had an infection that has required 3 weeks worth
of antibiotics.

He used to work 40+ hour weeks and then come home
and spent hours in the yard, or building new things in 
our house.

He was NEVER tired or weak or sick. He wasn't the slightest
bit frail.

Now he's always tired and weak and he's extremely frail.

Even his voice is quite.

His loud booming voice--the voice that we ALL used to 
"shush" on a daily basis...now it's so quiet we all have
to ask him to repeat himself.  Because we can't hear him.

And the cold...

He's always always always cold.

And so now errands are slow, Kyle walks like an old man.
I have run for 25 years to keep up with him and now my
pace has crawled to slow and he STILL can't keep up with
me.

I'm not sure we really got "goodish news" at the doctor
on Monday.  I watch my husband every day and he's
going the wrong direction to me.  But what do I know?
I'm not a doctor.

Cancer blurs the lines between black and white and I 
wonder, in truth, what it is that we're fighting for
anymore.

And I'm tired of fighting and I'm tired of watching
Kyle spiral lower and lower.  And he's tired, so very
tired--even his "good face" ("I'm fine" "everything is fine")
has changed its tune over the past few weeks when people ask.

This has been the hardest thing I have ever done
and I know we're not done yet.

Our family has been bickering a lot lately, you know, 
because of the stress of watching Kyle. We can all
see it and feel it and we ALL hate it.

The cancer, and what it's doing to him.

And so we take it out on each other because it's
the only thing we know how to do.  And we all
know there is love left behind the snappy words, yet
they still fly out of our mouths unbidden.

Because we hate it.

The cancer.

And what it's doing to our dad, and father, and husband.

I've heard people say that watching someone they love
die from cancer is the most beautiful thing they've seen.

I beg to differ.

It is a kind of torturous hell that you can never wake
up from.

It steals their very life and breath and soul.
It leaves them a shadow of who they once were.

I find it horrifying and frightening and sad.

Kyle told me to be honest, and I have been.

But I've only told the tiniest amount so you could see,
a small glimpse into our heart and home and soul.

There is so much more I could share, but I won't.

I would give anything to still chase Kyle around stores
and run after him as he did projects around the house--
but those days are done.  That chapter is closed for us now.

So he takes my arm and I wait for him to slowly 
follow along with me and  we keep moving ahead to 
that final stop.

Whenever it may be.

And I inside I scream and cry and fight it every step of the 
way, knowing it's coming closer and closer and there's 
no stopping it.

I hate cancer...I hate it I hate it I hate today.

Like a two year old having a temper tantrum laying
on the floor of the grocery store because my mom won't 
buy me a treat kind of tantrum.

That's what I've got.

I hate cancer.

It was a crazy not too terrible not even very horrible kinda good not very bad day....

Alexander has nothing on us.

(Of "Alexander and the no good, terrible, very bad day" fame.)

I'm not even sure I know where to start or how to explain 

all of this.

I will start by saying that at several points during the 

past two weeks BOTH Kyle and I have said to each other...

"Welp this is it.  I'm dying."

Or

"I think this is the beginning of the end."

Not that you're not ALWAYS dying when you have 

terminal cancer--it's just that the "dying dying" 

was postponed for a while.  You always know it's there 

waiting in the wings, ready to pounce again at a

certain point.  

But we were pretty certain it was here.

In fact if you were sitting outside of Clinic 1A

with us today, the mood was dim.

We were certain that Kyle had tipped and that he

had tipped the wrong way.

It's been an awful week. Or two.

Full of vomit and sleeping and coughing and more

vomit and more weight loss and ascites and weakness...

...and well all the things that would indicate a 

patient with liver cancer was, in fact, DYING of 

liver cancer.

So when Joan bounced in with an almost smile on her

face today we were a bit taken back.

Certainly she wouldn't be smiling if she was telling

us this was "the end", right?

She said "Kyle your bilirubin has dropped, it's going

back the RIGHT direction and so are your other liver

function numbers."

What?  He was going THE RIGHT DIRECTION?

As in the "not dying" direction?

A long story short we are cautiously optimistic that

he has indeed finally tipped, the RIGHT way, which

would indicate LIVER TOXICITY instead of liver failure.

His liver is starting to heal from all the radiation

and chemo and starting to function better again.

One must always be guarded in celebration, since this

is terminal cancer after all.

But we breathed out just a little today.

He does have a few OTHER problems though. (what's new?)

He is severely dehydrated and had to have a bag or

two of fluids to replace the sodium and electrolytes

that he is loosing every time we drain the ascites 

(fluid off of his belly).  

The symptoms he's having from that are bad enough.

And mimic some symptoms of liver failure.

He ALSO has an infection in his "Drain Hole"

AND a severe severe sinus infection - which are all

contributing to the never ending cycle of vomiting

and coughing and feeling miserable.

And also mimic some symptoms of liver failure.

He's been put on a 3 week course of antibiotics to 

kick some infection. 

He will have home health come in a few times a week

to hydrate him via a saline bag or two so he can

get on top of the dehydration.

Who knew?

In all the craziness of cancer and dying that

simple small things could blow up to be big problems

on top of what we're already dealing with.

Next week more labs to make sure numbers are still

tipping the right way.

I'm not sure this makes sense to even me--but this

is our update for today.

It was a pretty crazy day all in all.

That's what we've got!

Five

When I was about five years old I was climbing on the 
bathroom counter to get something out of our medicine cabinet.

We had an old fashioned mirrored glass medicine cupboard
that opened and shut like a door.

The edges of it were also very sharp and pointy.

As I finished grabbing whatever it was I needed from the
cupboard I started to slip and fall backwards off of the 
counter and I reached up quickly to grab something to 
stop my fall.

Unfortunately what I ended up getting was the very sharp
edge of the glass door and slicing my thumb wide open.

I clearly remember the incident, as traumatic as it was,
happening.

What I don't remember very well is the middle part.

The trip to the ER.

Doctors.

Stitches and bandages.

I still have the "L" shaped scar on my thumb from 
the top to the middle of my thumb where it was sliced
open. 

It measures a good 2 inches.

However, what I DO clearly remember next is the "after".

We came home and my mother gathered me in her lap
in her favorite rocking chair and while I held
my bandaged thumb out in front of my body...

...My mother snuggled me close to her body to comfort
me and she did what she did best.

She got some books and read to me.

Perhaps it was to soothe my mind.

Or her mind.

Or both.

But she held me close and rocked me and read to me until
it was time for bed and my spirit and mind had been calmed.

I was comforted by the fact that someone who loved
me had gathered me in and rocked me and eased my
mind with distraction.

And it worked.

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

Today we head off to the Doctor to see if there are any
answers. 

To be honest, we are not expecting good news.

Kyle has had a pretty rough week and we have been
around the block more than once with this cancer--
watching people we know die, researching (way too much)
online, and just living with cholangiocarcinoma for
20 months now.

Maybe we'll be surprised.  I suppose anything is 
possible, but we both sort of feel like we know
the direction we're heading.

And that's super hard, even though we knew it was coming.

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

And so we ask for comfort and strength.

Because we're practical like that and we know that
there really are no miracles with this cancer-
people don't just spontaneously heal from it--
it just doesn't happen and it's never something we
thought we "be" anyway.

That doesn't mean someone else can't hold out for the
miracle, it just means we are not the ones doing it.

However, just like when I was five and scared and hurting,
we're both kind of scared and hurting.

Grief is cutting deep into our souls once again.

It weighs heavy on our hearts and tears keep slipping,
unbidden, from my eyes at all the worst times.

We need the love and comfort and strength from those
around us to buoy is up.

We need a warm lap to figuratively crawl into and 
we need to be rocked.

Back and forth and back and forth.

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