What Can I Say? We have a minivan....

This is what I've got for today...

Minivans!!!

Oh blessed minivans!

Blech!

Who wants to drive a mini van?

They're so "mini-van-y"....right?

Not hip.

Definitely not cool.

It means you're a mom with kids.

(Which, that part, it isn't so bad).

I SWORE I would never drive one.

Ever!

It's the "uncool" poor mans version of an SUV.

It's just a darn minivan.

It's ALSO practical and better on gas mileage and cheaper

to maintain than an SUV.

To each their own, right?

Regardless, it's STILL a minivan.

(totally uncool--who am I kidding?!)

We have one sitting in our driveway.

Correction, we have TWO!

Mine, which is a few years old and the one Kyle drives

which is a million years old, and paid off, and will be driven

until it falls apart (which could be any time now). 

It's not flashy, or cool.

It has a dent in the side from Josh.

I have a story to tell about the night our minivan 

saved someones life.

One January winter night, about 8 or 9 years ago we had 

a sick baby.

Olivia.

She had kept us up for several nights in a row.

Coughing, throwing up, crying.

We were weak with fatigue and wanted nothing more than an uninterrupted nights sleep.

We would have sold our soul for pennies to sleep for more than

a 2 hour stretch.

It was early into a bitter cold January morning and we had
FINALLY gotten her settled down and to bed.

Our eyes were just shutting and our bodies relaxing into sleep

when the doorbell rang.

It was nigh unto 2 o'clock in the morning.

It was winter in Utah.  It was FREEZING outside. 

WHO in the world was ringing our doorbell at this hour?

Of course, I made Kyle go to the door.

It was probably an ax murderer waiting to kill us while we slept. 

(Only he was announcing himself by ringing our bell of course!)

He went to the door and from our bedroom I heard a mumbled conversation.

Then the door closed and he came to our room.

"Dor, there is a girl out there that I think is possibly drunk or high on something and she needs to use our phone...."

At this point, we were wondering if she could still possibly be an ax murderer and left her on the front porch to freeze to death.

Kyle got the phone and handed it out the door to her.  

At which point we both realized that it was ...

a) winter

b) FREEZING

c) she was crying and cold

d) FREEZING 

and so ...

e) we invited her inside to our living room

If it was our time to go, we were about to be taken out by

an ax murderer ringing our doorbell at 2 a.m. and we were 

dumb enough to let her in.

In the light of our warm room we saw before us a blue haired,

mascara streaked, teenage girl in tears.

Nope!  Not an murderer, we were 99.9% sure now.

Just a lonely, lost, sad looking teenage girl.

We sat in our pajamas, and she cried into the phone telling someone her story on the other end of the line.

We made out bits and pieces.

"Park City"  "Party"  "Lost"  "Scared" "Walked"

She hung up and turned to us.

We felt pretty bad for leaving her on our steps for even a minute when we saw her face.

Her story came spilling from her at this point.  She was a nanny for a family that had come to Utah for a ski vacation (from Michigan or Minnesota or possibly some other "M" state, my memory fails me now).

She had had the night off and met some people (and by "people" we mean "cute boy") and come to a party in Salt Lake City with him.

After a few too many drinks, the boy she was with was not being very nice to her and she walked out of the house, out of the party, and into the unknown.

(Obviously not a smart move on her part, one of many not smart moves....but she was young and having an adventure).

She started walking in bitter cold temperatures, and crying,

and realized she was drunk and lost and alone and cold.

She was in a strange city and didn't know what to do or how to 

get back to Park City.

After wandering from neighborhood to neighborhood, she happened into ours.

She realized she needed to call her mother back home and get some help.

Kyle asked her why in the world she choose our house of all the houses to stop at.

She told us that as she walked past our house, she saw our mini van in the driveway and knew we would probably have kids and be nice because of that van.

(How did she know WE weren't the ax murderers?)

But she stopped because of our van.

We were parents, albeit tired ones, and we were pretty nice.

Kyle got her a ride back to Park City, after figuring out where she was staying and sent her on her way.

We hoped she would be alright and finally went to bed.

(At which point Olivia woke up again crying.)

The next day, we got a call from the girls mother thanking us 

profusely for helping her child.

Her child that was lost and alone and in harms way.

We said we were happy to help and glad the story had a happy ending.

As we travel our own dark winter night in this journey we call cancer, we have had many times when we feel lost and alone.

Both of us.

Collectively and singularly.

Some nights (still) tears fall freely.

Some days, we are good.

As good as this new normal gets for now.

There have been many people to help us along our way.

Some of you have made "Rock Star" status.

You know who you are.

You are the people that are always, always there for us.

Always.

We know that we can count on you no matter what.

Even at 2 in the morning, on a cold January night.

You would let us ring your doorbell and welcome us in.

You would listen as we wept in your living rooms, with mascara

streaming down our faces.

You would hold our hands when they were chilled.

You would be the driveway with the minivan.

We know you would answer the bell when we rang.

You have, many times.

Even if you are tired and need your own good nights sleep,

you still answer your door for us.

To you, those of you that have put yourselves out there for

us at all hours of the day and night, we say Thank You.

This journey is STILL hard and scary and lonely and dark.

I can only assume it will remain both good and bad, until 

the end.

We thank you, you Rock Stars of our world for being there for us.

Everyone needs a house, with a driveway, with a minivan, with an open door, with a phone, with love....

....on the nights when things are darkest.

Thank you for (figuratively) "saving our lives" when we have needed someone to turn to.

And even though it's certainly not very hip and definitely not

cool at all, thank you for being the driveway with the minivan

in it and knowing we will always find a safe place to "call home" in your friendships.

Here's to minivan filled driveways and Rock Star kind of friendships~

Great article in the Huffington Post today about "magic cures" for cancer....

This is so well written.

100% how we feel.

And what we've been saying ALL ALONG~

Amen and Amen Joanna Montgomery!

(Click link to read)

http://www.huffingtonpost.com/joannamontgomery/keep-your-cures-off-my-cancer_b_3346767.html?utm_hp_ref=generation-why

A note to Ellen Foley....

The phone rang early this morning and a stranger asked for
me.

It was a call from all the way back East.

A woman I had never met that had heard of our story through
her daughter via a link, of a link, of a link in this interconnected virtual world.

She introduced herself as "Ellen", an 8 year cancer survivor
who was originally given 7 months to live.

She was "terminal."

At age 44, the same as Kyle.

It hasn't been a piece of cake, but she's still here.

She's 52 now.  She has a grandchild.  She watched her
children finish school.

She read my post from yesterday and wanted to tell me to never
give up hope.

Never, ever, ever, ever give up hope.

You never ever know what your story will be.

I thanked her and told her she was inspired to make that call.

All the way across the country to a stranger in need.

In a desperate dark hour.

I needed that reminder today.

Don't give up hope.

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

Another stranger in this virtual world, contacted me via Facebook messages.  

He wanted to remind me to take ONE DAY AT A TIME and to NOT worry what ANYONE else thinks, or says, or judges us by.

Until they have walked a mile in our shoes, they have NO CLUE
what it's like.

They don't know the intricate details of our life and can only make poor judgements based on limited knowledge.

He told me to cherish EACH day, EACH moment, EACH memory and take ONLY a step at a time.  

One day.  Just one day at a time.

That's all we can do in this volatile situation.

He has good reason to give advice.  

He has watched a father die.

A mother die.

A sibling die.

All from cancer.

He knows what he's talking about.

Cherish each day.

Don't worry about judgement.

I needed that reminder today.

Strangers with advice to take it "a step at a time."
Breath in.  Breath out.

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

Another friend sent a message from his flight after reading my blog post yesterday.

He had no good words, only a message of love and virtual hug.

It was all I needed.

To be loved and hugged.

Not scolded and badgered and reprimanded about what we are,
or are not, doing right or wrong in this our personal journey.

Just love.

Love is all you need.

I needed that reminder today.

To know that we are loved.

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


For you see, just when I think that God has abandoned me,
and left me alone to flail helplessly in these murky waters,
a kind hand reaches out to hold mine.

Yet again.

I cannot do it without these hands, who (I believe and hope) are acting in God's name here on earth.

Rushing in to comfort me and hold me, when I seem to find myself
at the end of my virtual ropes of hope and comfort.

Sometimes it feels like I have been abandoned, in spite of my most heartfelt pleas.

I feel like they are falling on deaf ears.

I feel like the arms of heaven have been withdrawn and I am alone.

Then, someone steps in and holds me up.

To those who have reached, and are reaching and will continue
to reach.

Bless you and thank you.

We could not breath, and live, and survive without your hands.

To give us reminders of hope.

And taking it a day at a time.

And love.

This is what I've got for today.

Thank you.  Thank you.  Thank you.

For listening and acting.

Thank you.

insidious, vile, foul, awful disease

You would think with good numbers, good chemo day, and an overall
good feeling husband I would be good this weekend right?

Wrong.

I am anything but good this weekend.

If you heard me swearing and crying you will know why.

I am "raging" at the sky.

Cholangiocarcinoma.org is a message and information board
I follow to gather knowledge about the fight with this
awful monster.

The insidious mother frakker.

This foul enemy.

There was a young girl in her 20's who has been fighting
this for two years, come September.

She was one of the "lucky ones" who had the option for 
surgery, not "just" chemo.

Surgery to remove all the bits of this black, tarry gunk dripping around inside of her.  (see previous post where I describe what I think this cancer looks like--not an actual description of said cancer--it's actually much more solid and unassuming in real life.)

In May, after a long fight against this vile disease she finally
met the criteria to have her surgery (resection or transplant...
I cannot remember which one).

She remained in pretty much critical condition from that day 
onward and passed away today.

Just a reminder to ME, that no matter what, this is coming 
down the road toward us.

I hate reminders.

But it is skulking, dressed in black, with a rank stench escaping
from it's lungs, ever so slowly toward us.

I like to think, as I watch Kyle mow, and build, and work this
weekend, that somehow, someway, HE will not reach this point.

It's impossible the he should succumb to that reaper of death.

Not him. No way. No how.

NOT KYLE!!

No way.
No how.
Not him.

I'm only fooling myself.

Sometimes when I face myself in the mirror, and look deeply
into my soul, I know I'm lying to myself.

And I crumble and break.

Some really dumb person somewhere made up the really dumb
saying that "God only gives us what we can handle."

(Sorry to offend those that believe this foolishness, because as you know if you've read...I believe that this cancer comes from anywhere but God.)

But IF I believed that God "gave us this"...I could not live,
or love, or breath, or be.

Because I could not handle this if I thought it did.

I cannot handle the other thought either.

This thought of what is marching our way.

What kind of a God steals a young girl in the prime of 
her life?

What kind of a God could not, and would not, step in, with mercy
and love and let her live. 

Grant a miracle.  Give hope.  Salvation. Life.

I'm finding it hard to be anything but sad and angry for the injustices in this thing we call life this weekend.

Cholangiocarcinoma, you are an insidious, vile, foul, and awful disease.

I am so sad that you stole another life this day.

A daughter, a friend, a human being.

I didn't even know her, but we have become related by
a common link.

And I just cried and cried and cried some more.

And beat my hands against the sky until they were bloodied
and broken.

"Why oh why oh why oh why...."

It's all so very senseless.

That's what I've got for today.

The party where Kyle announces he's really just a pedophile...or not.

Grace texted me the other day and said, "Mom, Dad gets along better with teenagers than with grown ups."

I texted back that I agreed.

She was watching him watch a volleyball game with the Olympus
volleyball team.

He was standing on the court, by the boys, arms folded across
his chest. (I wasn't there, but I've watched him enough to know
his exact stance at the game).

Talking to them, encouraging them, cheering them on.

He has helped coach the team for the past 3 years.

This year after learning of his diagnosis, they dedicated their season to him.

He was finally feeling well enough to go and watch a game.

It's true, Kyle likes kids.

All kinds of kids.

Big, little, short, tall, fat, thin, anywhere in between.

Just ask Josh's friends.

Or Grace's friends.

Or nephews, or cousins, or siblings, or any of our friends.

Or any of the youth and scouting groups he's worked with over
the years.

He is really just a giant kid at heart.

He likes to get dirty, hike, to camp, pee in the woods, swim, dig in the dirt, play Legos, rough house, fart, belch, and just plain have fun.

He is FUN!

If there is a toddler, he will get down on the floor and play
with them.

If there is a kid, he will talk to them about what they like
in life.

He talks sports, and movies, and music, and makes kids feel
comfortable around him.  

It's natural and no work at all.

Grace's friends love Grace's dad.

Josh's friends love Josh's dad.

ME?  I'm just the opposite.

I like using toilets, and having clean fingernails, and burping like a lady, and sitting on the couch rather than rolling around on the floor.

I am BORING!

Give me a good grown up and grown up conversation and I'm in element.

Give me a kid?  Or a teen?

Good heavens, I feel like the awkward teenager I was
all over again when I'm around them.

I don't know what to say, or what to do, or how to act.

So I make them food and then run away from them and hide.

I'll admit it, I'm not very cool.

Kyle is "cool" without even trying.

It's because he doesn't have to try.

Kids, they just like him.

Age 8 months to 18.

They gravitate to him.

A few years back Kyle's cousin had a Christmas party.

(Oh hey Libbi...)

She invited a bunch of people who didn't know each other.

But they all knew her.

We knew her, so we were invited.

To "introduce" ourselves to a bunch of strangers, to people we
had NEVER met, people who did NOT know us, we were
supposed to bring a gift.

A gift that "told" who we were.

A little bit about us.

Kyle brought Legos.

We then played a white elephant game where random people
opened gifts and we then told the group if it was OUR
gift and WHY we brought it.

Someone finally got to the box of Legos.

At which point Kyle was supposed to explain why he brought them.

He blurted out, "OH that was me!  I brought Legos because I
like to play with 14 year old boys."

There was a stunned and uncomfortable silence following his
announcement.

With horror growing in my heart, and on my face, I realized what
Kyle had just blurted out of his mouth in complete innocence without thinking.

Did he REALLY just say....

"I like to play with 14 year old boys!"

SERIOUSLY??!!?!  Did he just say that in a room full
of complete strangers?

My husband had basically just told a random group of complete strangers that he was basically a pedophile.

Only he's not.

In their minds anything was possible now.

Only he wasn't.

Or isn't.

Dear Lord, what had we done here?

People squirmed uncomfortably in their seats,
avoiding eye contact with us.

There were a few nervous laughs.

"Ermmmm, what he REALLY means...is he just likes kids!!" we tried to tell them.

Yes, as you can imagine that didn't seem to go over any better
with the group.

So now not only did he like 14 year old boys, but ALL children in
general.

Things were getting worse by the moment.

"Wait," we giggled nervously with sweat starting to pour down our faces, "he doesn't LIKE LIKE them.  He just likes to hang out with kids."

We were inching toward our coats and getting ready to run out the
door before people starting throwing egg nog at us.

"Like, he likes to hang out with them, and camp, and do stuff."

Ya, it wasn't ever going to get any better was it?

We tried one last approach.

"What he means, what WE mean is that he's just a kid at heart!"

YES!!  That's what we were trying to say, from the beginning.

Before we botched up the whole introduction.

"THAT'S why he brought Legos...to represent that he's a giant kid at heart!"

We breathed a giant sigh of relief.  And pressed onward.

"He's REALLY just a big KID at heart."

"He doesn't even really like kids."

"He just likes to ACT like a kid."

"In fact after today, he will never be alone in the same room 
with a kid again."

"Or in a room with kids ever again, period."

"You can TOTALLY trust your kids with him."

"No really, you can...ask Libbi!"

His cousin, who grew up with Kyle, just started laughing.

Soon everyone was laughing.

The party continued on and we left when it was done, swearing off Christmas parties for life.

And kids.

And Legos.

Especially parties where we didn't know people and had to 
bring Legos to introduce ourselves.

Needless to say, if Libbi has ever had another Christmas party
again...?

We haven't been invited back.

And if she ever does have another party, we will bring 
something like candy, or stray puppy.

Something completely innocent and benign.

Because we like to eat chocolate and we like dogs.

Something that has NOTHING to do with kids.

Or pedophiles.

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

A funny story about my husband.

Hopefully he's better at fighting cancer than introducing 
himself at a party full of strangers.

So far, so good! -----------------------------------------------------------------

Round Nine of chemo was today at the Huntsman.

On Instagram "thebompie4".

It was "F cancer friday."

"F", Of course stands for "FLUFF Cancer Friday."

We used a FAKE middle finger, so as not to offend.

We "ring fingered" people off all day.

Except for the one time Kyle forgot.

We laughed and made it through another round.

Shelly, the PA, told Kyle his blood work was fantastic.

She used the phrase "best case scenario with this type of cancer."

We will take small blessings, like 'best case scenario blood work.'

His tumor marker (which 'loosely' measures the cancer in his blood) was back in normal range.

That's the easiest way to understand it--is now at 33 after 8 rounds of chemo.

He started at a 77.

Normal range is 0-37.

Numbers coming down that's a good thing.

We will take ALL good things on this road.

All good things.

Have a great weekend everyone!!

And hold on to your children if you see Kyle walking the
dog eating candy. (wink).

Just a little Thank You...

There are never enough Thank You's to you all.

Kyle says it feels like someone gave us a credit card...

and we keep spending and spending all the credit on it.

Which in some ways is great.

But there is NO WAY we can EVER (ever ever ever)
"pay back" our "debt".

The debt is kindness of course.

The kindness that has been shown to our family over and 
over and over again.

I could never write enough thank you notes, or bring enough
gumball bags, or repay your kindness.

Ever.

So in case anyone actually reads my blog (not sure if anyone
does...no one comments...so it's hard to know if anyone is
ever reading.  Which is okay if no one is, remember this is
for me and my family anyway).

BUT, if anyone reads this...

Once again a huge thank you!

Thank you for endless chemo night dinners.

Thank you for calls and texts and messages and notes 
and emails and visits and waves and hugs and kisses.

Thank you for praying and keeping us held up with your love.

Thank you to the WONDERFUL and amazing angels dressed as nurses
up at the Huntsman Center who make a really hard day, better.

Thank you to Dr Sharma and his PA Shelley.

Thank you for your monetary donations to this cause.

I guess that "cause" is US!

Many have been made anonymously, so I don't even know who
to thank.

But THANK YOU!

I DO want to say one word about the money too.

Just so you know what is happening with it.

YOUR money, big and small donations, freely given to us.

It is sacred money to us. 

It will sit in an account and will never be used for anything
other than our basic needs to help us along this cancer journey.

I want you to know that we will be "wise stewards" of your
donations.  I feel a great responsibility to handle it well.

It will mostly sit and wait in an account for the time when
Kyle goes on disability.

At which point he will go 3 months without ANY pay at all.

(That's just how disability works).

When it kicks in, we will only receive about 50% of his salary.

And since we have no idea (when we reach this point) how long
things will go on like that...we will keep these funds sitting
and waiting for use then.

We will still, of course, have ALL of our bills including 
medical costs on top of that.  

It will be a heavy burden.

So the money sits and waits for that time in our life.

It is not used for vacations, or home repairs, or eating out.

I just want you all to know (all who have donated) that it will  REALLY REALLY help our family.

We have talked (constantly) about me getting a job and Kyle told me to wait until summer ends and our family vacations are done.

(He's a boss and said no one will want to hire me and have
me leave for two extended periods of time in 3 months anyway).

He wants me to spend this time with the kids and him.

Time, we don't get it back ever.

So if anyone knows of any great, flexible part time work come fall--think of me.  

The one thing I would still love to be able to do is go to 
chemo appointments with my husband.  It's very important
for me to be able to support him in this journey, and 
attending chemo day is something that I treasure in a weird
and crazy way.  (And that's unfortunately an all day gig on
Fridays now... 8 am til 5 pm.)

Again, it's that time thing I will never get back if I'm not
there.

Some people who have been through this have said "DO NOT get
a job, at all!  You need to be here with Kyle now, something will
come up when you need it!  BE WITH HIM!"

Some people have said "Why don't you have a job yet?"

For anyone that wonders if we are thinking about these things?

Yes, all day every day. Most nights too.

They keep me awake and render me sleepless.

So yes, we're thinking about the future.

And jobs.

And schooling.

And what in the world we will do.

ALL THE TIME.

Anyway, Thank you!

Thank you!

Your kindness overwhelms us.

We are grateful from the bottom of our toes to the tippy top
of our heads.

Thank you all....

That's what I've got for today~

My heart cracked in two...

I am on blog overload today, so I apologize.

Remember what I said though (Dumbledore, Harry Potter, thoughts, 
wand, Pensieve).  *See Avett Brothers post in case of confusion.

I need to get some stuff out of my brain that's been 
swirling around in there, ruminating.

I told Kyle two nights ago that I had just reread this blog from
the beginning.

Oh man!  That was awful!  Sorry to put you guys through all
that.

It was heart wrenching, and brutal, and depressing, and 
hard to read.  

It made me cry all over again.

I told Kyle since this was MY way of processing this journey, 
I actually was NOT sorry.

YEP!  You read that right! 

FAKED YOU OUT! 

I am NOT sorry it was hard to read, and brutal, and depressing, and made you cry.

Not one bit sorry.

I guess I'm sorry that I'm not sorry.

It was brutal, and depressing, and hard to live, and made 
US cry.

It is real.

It is our reality.

But here's the thing he said to me.

There is NO WAY I could capture and re-create all those fresh,
raw, awful, horrible, beautiful, painful, REAL feelings if I 
were to try and write it all down now.

NO. WAY.

The thing is, the news that we got back on March 8, it
changed our lives forever.

It made, and will continue to make, an indelible imprint on 
our life FOREVER.

There's no getting out of the inevitable with this one.

I am absolutely glad (no matter how hard it is to read) that
I captured the truth of this journey from the beginning.

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

And here is why.

Yesterday I got an email from my sister.

She has a daughter that is ring shopping.

You know what that means.

Wedding bells.

In fact, there could be 2, possibly 3, weddings in the near future.

Nieces, tying the knot.

I read the email from her and my heart cracked in two.

I could feel it.

Literally, I kid you not.

The emotions that washed over me were profound and amazing
and deep and again, raw.

In one breath I felt joy and happiness for my niece who is 
giddy in love with the boy of her dreams. 

Her life is before her and she is on the brink of something
amazing.

In the same split second, of the very same breath, my heart shattered into a million pieces.

I thought, to myself, Kyle will (probably) never see his daughters get married.

(The odds are not in his favor, unless we have a teen wedding which I would just as soon skip!)

I wept and wept and wept and thought "this is not fair!"

I sent her an email telling her of the crack down my heart.

Her reply was so kind and loving and it made me cry all over
again.

She understood.  She felt the same way.  

She said it was OK for me to share those feelings with her.

She said...

It's not fair. 

It's so not fair.

It's just NOT FAIR.

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

I'm getting better at "day to day" life with this...

...this cancer.

It's the new normal and it helps that chemo has brought Kyle
back to 90% of himself for now.

Our social worker at the Huntsman said she sees people adjust
all the time.

I think I'm finally there.

3 months in.

The hideous shock of the news has worn off and I've moved
past numb and anger (most days) to "acceptance" in some
weird way.

Acceptance, and fighting like hell, until we can't fight 
anymore.

BUT, the part I STILL struggle with is all those things...

That endless list...

That pile of events in the future.

Heaped up and waiting to happen, like a pile of laundry
waiting to be folded.

The laundry and the future?  They never go away.

Kyle reminds me (daily) to take one day at a time...but
I'm a worrier by nature and I cannot help but think about
the things that are yet to be.

Even harder for me to swallow are the things that must be
passed through without him.

They make me fall to my knees in agony.

And beat my fists against my pillow.

And cry when no one can hear me.

It is not fair.

Life is not fair.

It's just not fair.

It's SO not fair.

And so while memory making and life continue, there are moments
that remind me (emails of weddings) of what is to come.

Those moments are very real.

And I make no apologies for recording them and sharing them.

If only with myself.

This may be all I have for today.