Sunday, November 16, 2014

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.











Monday, November 10, 2014

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!

Monday, November 3, 2014

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.

Monday, October 27, 2014

We haven't tipped yet.

No tipping here ...yet.

Kyle met with the doctors again today and had his blood
drawn while I nervously sipped my Diet Coke at work, trying
not to throw up.

Waiting. 

Waiting to hear some news.

He called and said "labs are steady.  No good news and
no bad news."  

So we are on hold once again.

His numbers have hit a plateau, going neither up
nor down.

This isn't good and it isn't bad, we could still "tip"
either way.  And only time will tell.


(I hate waiting!  I hate it, hate it, hate it!)

He goes back next week to get his blood checked again
and until then we wait some more.)

I hate waiting.

(Did I mention I hate waiting?)

But I also hate bad news.

(Even worse than waiting.)

So "no news" this time?  It's simply that.  

NO NEWS.

And we wait.

And I do more homework.

I got a B+ on my math test, so that's good.

That's our update for today.

Which is kind of a non update.

Friday, October 24, 2014

Kyle made me do it...Tipping Point

He told me I "had to" post an update.

Doesn't he know I have to finish my first
English paper and take my 2nd Math midterm
tomorrow?

So rude. (kidding, of course I'm kidding!)

This has been one heck of a week.

From start to finish.

And it's not over yet.

Kyle had his fancy schmancy ultra sound yesterday
and the results came back lickity split.

He does NOT have portal vein hypertension.

I repeat, he does NOT have portal vein hypertension.

(basically a plugged up blood flow in or out of
his liver which causes things to shut down.)

That's good.

What's NOT good is we still don't know what's
causing all his problems yet.

Today he had a small surgery up at the Huntsman.

They put a permanent drain line in his belly so
I can play "nurse" and drain his ascites here at home.

Ya, you know you want a video of that.

His belly was pumped out today (down almost 20 pounds from
all the fluid they removed...we have pictures if anyone
wants to see them.  They are horrifically awesome.
Or awesomely horrific--depending on how you feel 
about those sorts of things.)

He feels 1000X times better with all that fluid out 
of his stomach.

He spoke some more with doctors today, who in turn
consulted with some more doctors and each other,
and they all kind of feel like Kyle is at the "tipping point".

(Ya, thanks for the "news flash" fellas!)

Either his blood work/labs will go "good" or "bad"
from this point on.

"Good" means his liver is toxic from radiation 
and chemo and he can rebound on a break from 
all treatment.

(Which presents new problems in and of itself--
but those bridges will be crossed if, and when, they need
to be.)

It means that his liver was angry and mad and telling
his body ENOUGH OF ALL THAT POISON YOU'RE PUTTING IN ME!

"Bad" means he is going to get worse and it will 
be the liver failure end of things.

Which, is really as bad as it gets.

Monday?   More blood work and doctor appointments.

Only more time will tell what his body is doing.

Sadly, or gladly, depending on the outcome, it's not
an easy process to figure out.

I told Kyle this week that as much as you (me) think
you're preparing yourself for the "really bad news"...

You're NEVER prepared.

Lets face it, my heart will never be ready to hear
he's dying....like really really dying.

It just won't.

So tonight he will rest and tomorrow we will pump.
And we then will see what Monday brings.

There's the update for today~



Wednesday, October 22, 2014

Waiting To Exhale

First, thanks to all of you who called or texted 
or reached out to show you care.  It means the world.
Thank you so very very very much.

Second, we met with more doctors today and here's what we know:

Kyle still has cancer.

He's still terminal.

His cancer has NOT exploded inside of him, it has
stayed calm and steady.

Kyle still has ascites.

We don't know why yet.

Still.

Dr. Sharma has a "working hypothesis" that Kyle's
liver is showing signs of failure because of liver
toxicity.

This is his best guess, but he's not even sure.

Yet.

What is this liver toxicity he speaks of?

Well, the harrowing combination of Y 90 radiation
and the super toxic 5FU while holding the cancer
at bay (and beating it back even) has really
done some damage to the old piece of meat inside Kyle
that's growing the cancer.

(the liver)

Or ...

He could still have portal vein hypertension.

Or...

He could actually still just be in liver failure.

It seems like it should all be so easy to figure
out, but it's not.

Over the past 2 weeks Kyle's liver function numbers
have gone a little crazy, his bilirubin has also 
headed upwards...and he's retaining fluid in his 
belly.

Today numbers (blood) has steadied and his bilirubin
even had a little drop.

This would support the "working hypothesis" of
liver toxicity....IF IF IF his numbers keep improving.

(going down)

However, we need time to show us which way his
numbers (bloodwork) are going.

Up=bad
Down=Good

Waiting=excruciating

It's that glimmer we hoped for according to Dr. Sharma,
along with "all bets are off" and Kyle could still
be in trouble.  (Sharma's words, not mine)

Here's what else we know.

Tomorrow Kyle will have a fancy schmancy ultrasound to 
track the blood flow in and out of his liver.  They will
finally be able to see if he has compromised veins
or a clot blocking the portal vein causing poor
liver function and ascites.

IF this is the case, it is something they can work
with.  There are options, things to do and try.

They are also holding ALL chemo and rechecking Kyle's
blood work next week to see what liver function and
bilirubin are doing.

IF they are holding steady or doing down, it could

mean that Kyle did indeed have liver toxicity and
his liver could "feel better" if he takes a break.

(Or it could be the vein thing....or or or)

In short, we know some things, but not all things.

In fact, typing this out it hardly feels like we
know anything.

But we keep gathering information.

And so we wait to exhale.

A day at a time.

That's what we've got.

For today.


Tuesday, October 21, 2014

Crossroads

We are standing at a crossroads here in the fight with
cholangio.

I've had a few texts and calls from loving friends so
I thought I would update on our "non update".

Kyle went up the Huntsman ER monday to hopefully get
some answers, things are getting complicated, so answers
are harder to get right now.

They couldn't drain him again (the ascites) because his 
platelets were so low among other things.

Details need more attention paid to them and doctors
are trying to carefully analyze everything before
making the final call.

Kyle met with one more doctor today, who very bluntly 
said to him, "Kyle if you are indeed in liver failure,
you have about 8 weeks left."

That's a pretty brutal thing to hear, even when you
know it's coming.  It rips through heart muscles with a
ferocity that you cannot even imagine.

Even when you know it's coming.

However....

There is a glimmer of hope on the horizon, since no one
can seem to decide if Kyle is indeed in liver failure
or not.
(some numbers would seem to say so, some would not).

Kyle likes to hang on to glimmers and I like to hang
on to Kyle, and for what it's worth?  Despite it all,
ALL of this that's been going on for a week now...

He's literally still smiling and has such a positive
attitude.  It's pretty amazing if you ask me.

He may ALSO have something called portal vein hypertension,
which is not good either, but can maybe be fixed and buy 
him some more time.  In short (and google it if you 
want to know more, I'm too tired to explain it all) it 
means a major blood line into his liver is not working
right. 

This causes liver failure in a sense too.  
And causes the fluid to build up in his belly (ascites).
And a bunch of other not so fun side effects.

But it has a few solutions that work for some people.
And some solutions buy some more decent time.

His liver could be damaged for a number of reasons:

1. cancer
2. radiation (the Y-90)
or
3. chemo
4. or a combination of all of the above.

It's a delicate balance this whole thing is...staying alive
with cancer.  Because sometimes the very thing keeping the cancer
at bay is also killing you in the meantime.

Awesome-sauce, right?

The tumor board is meeting up at Huntsman discussing his case.

We meet with several doctors tomorrow to see what the
final verdict is.

I'm not one to hang my hopes on a miracle in this case,
neither is Kyle, we have always known what the word
"terminal" means here...

However that doesn't mean we wouldn't take a "Hail Mary"
at this point.

We will know for sure tomorrow (hopefully, we've been
saying this for a week now).

And then we will go from there.

In the meantime, we huddle together, bracing ourselves
for whatever comes, standing at this crossroads, with
a lot of tears streaming down our cheeks. (mine mostly,
remember Kyle?  He's still smiling)

That's what I've got for today, it's not the best update
ever is it? 

Sorry.