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.

Saturday, October 18, 2014

Good News and Bad News

Well we waited ALL day for CT results from the doctor
yesterday.

The good news?   It was Kyle's birthday.

The bad news?  He kind of felt like crap.

The good news?  He went to breakfast and lunch with some
                people he adores and ate and had good conversation.

The bad news?   He had to come home and take lots of naps.

The good news?  He kept calling and emailing waiting for test 
                 results.

The bad news?   None by 5 pm when the Doctor office closed.

The good news?  Someone finally called at 6:30 pm to tell him
                 the CT had STILL NOT been read!!!! (UGH)
                BUT, they ascites lab results were back and 
                 THERE IS NO INFECTION OF CANCER CELLS in that.
                 (so no cancer spread!!!!!!)

The bad news?   His belly has already RE-filled with fluid and
                he's miserable...besides the fact he has a 
                 Semi-truck sized bruise on the side of his
                 belly from having it drained two days ago.
                 AND he just finished chemo and feels crappy 
                 from that AND he had one more complication
                 I won't publish on the blog that we thought
                 would send us to the ER last night.  The
                 doctor told us to wait 24 hours and see what's
                 going on.  AND he had his neulasta shot (so like
                 Harry Potter "skela-grow" where his bones
                 ache and ache.  
                 Basically, he's a mess.

The good news?   He's not dead yet, even though he feels like death.

The bad news?     Now we wait until Monday for all results. I'm 
                  guessing he's headed BACK up to Huntsman for more
                  draining. (well, that's a certainty.)  And who
                   knows what else.


The good news?   That's what we have for today.  Or is that the
                 bad news?  I'm not sure anymore.

The good news?   I have another blog post that I wrote today--
                 go to the next page to read more.
                  Or maybe that's bad news too.

      *********** I just know it's all I've got.***************

The Big Picture

 My kids? They LOVE their dad.  Like really really love love him.
All four of them. Even the teenagers who usually dislike their
parents, THEY love their dad too. 

Who can blame them?

I think if they secretly had to pick the parent who was
dying from terminal cancer, it would be me.

I'm not offended, that's who I would pick too.

Kyle is more fun, he's nicer, all the teenage friends of
the kids love him.  He cleans better, is more organized,
and makes good dinners. He has a college degree, he had a 
job that could have supported the family ...and well, 
everyone just needs their dad.  

It would have worked out a lot easier if it
were me.  But it's not.

So they're stuck with me in the end, as sad as that is.

I will learn to be more fun.
Or something.

People always use the expression "Look at the big picture"
in all of this and you know, while that's a nice expression
and everything, I want to give you just ONE TINY snapshot
into our lives as to what the "big picture" looks like.

Kyle is sick.

Someday Kyle will die.

I will be left without a husband.

My four kids (remember those kids who ADORE their dad?)
they will be left without a dad for the REST OF THEIR lives.

Ya, that kinda sucks.

I know we like to throw around the afterlife, and the
whole "families are forever" thing...and while in theory
that is pretty hunky dory, in THIS LIFE, it doesn't really
fix anything.

NOW think back on the last 40 years of your life, if you're
old enough to remember that far back.  Think about HOW LONG
40 years has taken to go by.  Think about how many things
have happened in 40 years.  Think about all the holidays,
life events, and birthday parties that have happened.

Then think some more about how long 40 years is.

Then REALLY think about it some more.

And one more time for good measure.

It's a lifetime, literally.

It's a long long long time to be without a person that
is the rock of your life.  

I would imagine people go into a free fall when it all
comes apart, not sure where to grab, who to hang on to,
and how to make sense of it all.

This is where I don't want someone to tell me to "look
at the big picture".

MY big picture?

MY KIDS big picture?

It's for the next 40 years without a dad.

(I chose that number randomly, considering he's 46 now
and his grandparents all lived and ARE still living into
their 90's--I figured that's a good number to have expected
from Kyle,  had he NOT gotten cholangio-freakin-carcinoma).

Does this mean we will be sad every day for 40 years?

I sure as hell hope not.

I imagine that the pain ebbs, and flows, like the waves
of the ocean....in and out....gently washing over our
hearts after the deepest and hardest sting goes away.

But then there will be days like this....

And as you can see, I don't even need words to explain
the rawness of pain and emotion our hearts feel for 
this kind of thing in the photos that follow.

Thursday night was my nieces wedding.

Grace was a bridesmaid.

Everyone looked lovely.
It was a beautiful night.

Grace breathed in my ear "weddings are hard".

I can see that, she's 17, it makes her heart ache
knowing that HER future wedding will be without the
very first love of her life, her dad.

Grace and Kyle?  They have a special bond that only
dad's have with their daughters.  It is apparent just
watching them with each other.  She adores him
and he adores her.  

As it should be.  
As it should be.

As the night went on, Grace's normal exuberant, radiant,
glowing personality seemed to dim --just a little.

I kept asking her what was wrong.

And then they had the father of the bride dance with
his daughter....

And then they asked all the bridesmaids to go dance
with their fathers.

And Grace SAW the "big picture" in that moment.

And I watched Grace fall into her father in a puddle of 
tears.   And I watched them cling to each other knowing
there would never be a "father of the bride" dance at
Grace's reception and I willed myself to stem the tide
of tears leaking from my eyes.   And my heart broke
into 1 million pieces with my daughters heart, and my 
husbands heart.

And I cried.

And I thought of the "big picture" again with cancer.

And it hurt like hell, and I felt the claws of unease
and discomfort reach in and wrap around my heart and 
more tears slipped down my face at the thought of all
the things, ALL THE THINGS, that would be missed in the
next 40 years.

Just so you know?

The "big picture" sucks.  

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

Picture story follows below.

No need for more words.

















Wednesday, October 15, 2014

I'd like to buy a vowel Vanna...

In this crazy spinning wheel of cancer, we have had the 
added fun (and I use the word "fun" very very loosely here) 
of having learned some new words.

Words like:

Cholangiocarcinoma


Cisplatin

Bilirubin 

Gemcitabine


And so on.

Today we learned some NEW words, you know, to keep us on
our toes.

I'll be damned if my toes aren't getting tired though.

Boy do we love new words!  (Insert sarcastic voice here)

Today we learned Ascites and Paracentesis.

So Pat and Vanna?  We will take the vowel "A"
and the letter "P" to add to our vocabulary.

Kyle and Josh had a fun double birthday weekend in 
Chicago this past weekend.

Right before Kyle left I told him "UM, I think your
belly looks a little swollen."

To which he just said "I'm fat."

Long story VERY short, his belly was indeed swollen and he
told me via text coming home from Chicago that it
had gotten even MORE swollen.

He had spent a day going back and forth in calls/emails
with his P.A. here and didn't want to ruin his trip 
with Josh and so he wouldn't do anything until the trip
was done.

I told him I would personally murder him if he ever lied
to me again, or didn't tell me about something that was 
going on.

I am not sure if he took my threat seriously or not.

So I took a day off of work to go to the Doctor with him
today as he was scheduled for chemo.

We had no clue what the day would hold with this
new symptom, and I wanted to be prepared to support him.

And because for the first time EVER, Kyle told 
me "I'm scared."  I'm sure it wasn't easy to say,
and it definitely wasn't easy to hear.

Kyle puts on a dang good face ALL of the time, but
what people don't see is the "behind the scenes Kyle."

This chemo, and this cancer, has taken a toll on both
body and soul in almost 20 months of fighting it.

On both of us.
--------------------

Back to today.

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

So today we met with a new Dr. who confirmed that indeed Kyle
did have ascites (which is fluid accumulated in his 
abdomen) and should Kyle wish, they could drain it.

As he thought about it, Heidi (his sister) and I insisted 
he have the procedure done.

He was in a LOT of pain from it.

He lost 7 pounds and about 6 liters of fluid in 5 minutes.

If there ever was a diet to patent this would be it!
Albeit it for a very awful reason.

It was horrifying and amazing to watch this process
being done to him and he's a little sore after
having a 7 cm needle stuck into his side and poked around.

And I didn't take any snaps of the fluid, I may regret 
that later.  Who doesn't want a picture of straw yellow
abdominal fluid sitting in gallon sized containers for
their posterity? 

Now here's the worrisome news....

Ascites with this cancer is never a "good sign",
and as we've said over and over we can go from good
to bad on the turn of a dime.

They took some fluid to the lab for testing because they
want to see if there are cancer cells in it (if so it 
could indicate that the cancer has spread to his peritoneum
and is causing back up.)

OR it could be that his liver function is starting to 
fail and it can't get rid of the fluid that is normally
processed through it.

OR it could mean he has a blocked bile duct from cancer
and again the liver is not functioning as it should.

OR it could mean his kidneys are failing from the chemo.
(However this "OR" has been crossed off the list, since
his kidney function blood work today was stellar).

His liver proteins are not looking so hot though and have 
been trending up (which is bad-ish).

And no one is sure if his liver has taken a hit from
19 months of chemo and/or 2 Y-90 treatments (which also
kill and damage good, healthy liver tissue as well as kill
bad cancer)

We spent from 8:45 until 4:45 up there today and ran
out of time for a CT scan.  

That will be done tomorrow to show the Doc if his

cancer has "exploded" since his last scan.

The blood work and lab work from the ascites drainage
will show us more about what the cancer is doing.

Once we have more answers, we will be able to see the 
bigger picture.

So until then we wait.

And I ask for my final letter.

You know what it is, if you've been reading long
enough.

I will take the letter "F" please Vanna.

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


Sunday, October 5, 2014

What I want my kids to always remember

Kyle's shots worked!  He had chemo this week and then he
had more shots.  It was a long, hard week. He felt particularly
bad. Particularly tired and run down and not so super great.

I had my first math test of the semester this week
....it was ALMOST like I had chemo and shots. 

And I certainly cried more than Kyle during the whole process.

At one point Josh came upstairs and asked "test going 
that good huh?"

What can I say?

I seriously just hate math.

As much (if not more) than Kyle hates chemo.  And shots.

And this leads me to the point of my blog post.

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

Here is something I want my kids to always remember about 
their dad.

I find that oftentimes when people die, afterwards, they
are somehow transformed into these people who were perfect,
without flaw.

I want my kids to know their dad DID have flaws.

"Skeletons in the closet" like they say.  Such that when
one throws open the closet door, one flings their arm up
to cover their eyes.  The mess inside the closet is
enough to make your turn your head to the side and quickly
shut the door.

Now please don't think I'm disparaging my husband, because
I'm not.

Open MY closet door?  Same thing....old pile of skeletons
best left dying inside.

I double dog dare any of you reading this blog to tell me
you have no such skeletons and are perfect human beings.

And if you are?  Good on you.  

My point is none of us are perfect human beings (for the most
part) and I find it laughable when people die we only 
remember the good stuff.  Maybe that's what death does though,
it trims out all the bad stuff so we are left with peace.

But I think that there is always bad stuff, and 
hard stuff and painful stuff that we must work through
when someone leaves us.  Even if it's just the pain at
being left behind.  That is some mighty hard stuff to
work through.

Such is life.  Such is life.

BUT, here is where I want to talk about some good stuff.

And Kyle's not dead yet, which is especially good stuff.

He likes to remind me of that all the time when I let
a tear or two slide thinking about the future.

I hear you Kyle.

This week was at one point supposed to be Kyle's "OFF"
(chemo) week.   His darn old white blood cells messed all
of that up so it was now his "on" week.

It's hard enough living life in 2 month increments like
we've been told to do, it's even HARDER to have "off" weeks
become "on" weeks when you make plans in your life with 
cancer.

So "off" became "on" and tickets that were purchased MONTHS
ago (so far back that I remember thinking at the time "I wonder
if Kyle will even be alive in 9 months when this (event) comes."  

Please don't hate me for thinking that.

Sadly, this is how one thinks when your husband has terminal
cancer, knowing that things can change with the blink
of an eyelash.

9 months came and Kyle was still here, doing pretty darn 
good despite everything.  

And now he had a choice to make.  He was hooked up to 
chemo, laying on the couch.

He was tired, in pain, literally wiped out and aching.
He felt sick, he felt like he always feels the day of chemo...

...he felt like curling up in his bed with a blanket and
laying down and sleeping for hours.  

And then figuratively dying a little bit.

I told him we could find someone else to go.

I was not that person since homework consumes my every
evening for hours on end.

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

He groaned and got up and said he was going.

And he went.  And he smiled.

He took Eliza (who is somehow NOT pictured) and Olivia
to Katy Perry for Lizzie's birthday.  He went and sat and
had a good time with his girls.

He wanted them to remember.

Exactly what I always want them to remember.

That no matter HOW bad, or sick, or down, or tired,
or miserable he has been.  He keeps getting up and 
going.

He told me he wants his kids to remember a dad who
pushed through the hard times and tried.

He wants them to remember a dad who got up and kept going.

He wants them to remember a dad who didn't give up.

He wants them to know he did it, all of it, because he
loves them and wants to be here with them for as long
as possible.

And he wants to do it on two feet, in between rests on 
the bed, for as long as he can.

And THIS, this is what I want my kids to always remember
about their dad.

To remember him in this way, mixed in among ANY of 
the bad stuff, is THIS.

This good stuff.

He is an amazing example of courage and strength.

He is amazing example of getting up when he only wants to
lay down some days.

He is an amazing example because love is motivating him
to keep going.

He is not perfect.  He never has been.  

But he wants to make memories with you kids while he can
and is willing to overcome any odds against him.

That?  That makes me love him in a way beyond description.

That?  That makes my heart proud to know him.

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