Easter & What Kyle says is the WORST part about having cancer...

Today was Easter.

The "terminal" guy made us crepes for breakfast and I cut up and made all the trimmings (like homemade caramel sauce and homemade whipped cream.) Yum. Yum.

Sunday Morning Breakfasts have always been a "Kyle tradition".

He makes a mean crepe and looks good (in my apron) while doing it.  He also does toilets and folds laundry...and cleans up vomit.  I have some dark days ahead of me thinking about vomit cleaning.  Hopefully ALL of my children are old enough now to make it to the toilet.  Although there was that one incident last winter....

I shudder at the thought of cleaning up vomit.

But I digress.

Today we had everyone bring out all their "yellow" things and tried to look Easter-y.

I think it worked.  We looked like a bunch of walking Easter Eggs.  And we were trying to blend in with Kyle's slightly jaundice skin.  Again, I think it worked.  We wore colors MORE yellow than him.  You hardly noticed his slightly yellow hue.

I was also trying to hide the fact that I've aged 20 years in one month.  I don't think THAT worked.  But we will take what we can get here folks.

The weather was gorgeous.  We spent hours and hours outside.

We did a super duper cala fraga listic expe alidocious (spelled completely wrong) Easter Egg Hunt for Puddy (AKA Olivia) who has been ignored for a month.

We're sorry Olivia.  We promise to try and remember your birthday at the end of April.

And I took a zillion pictures.

It was a zillion too many according to Kyle.

HE SAYS this picture taking is **THE VERY WORST PART** about having cancer.

Seriously?

Seriously!

Worse than having poison dripped into your body for 6 hours each week chemo?

Yes, he says worse than chemo. (aka Poison).

Worse than labs and blood work and Doctor visits and needle pricks and hours at the Huntsman Center?

Yes, yes, yes, yes and yes.

Worse than feeling bad?

He says YES.

I told him he's just going to have to live with it, and I kept snapping pictures.

We're not movie stars, or even the best looking family on the block.  What can I say?

But we ARE a family and we have created years and years of good times and memories together.

The picture I can't  I won't show is the one when I said, "Everyone do something silly for me."

All the kids, but the "baby", did the same exact thing for the camera.

God Bless 'Em.

We've either failed miserably (probably) or done something right.

We all laughed anyway.

We know each other so well.

And this is what I love about US.

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

will the real Kyle please stand up?

It's hard to believe a year ago at Easter that Kyle, Josh, Grace

and I were HERE...In New York City.  A place that we love (and thanks to the fabulous Wilcox family for putting us up!) and have been able to visit a number of times over the past five years.

We ate a lot of this....(they never smile for pictures, don't worry, this is normal!)

We got on and off of the subway here A LOT

We saw this amazing sunset at the Top of the Rock

We ate some more of this (what can I say? we love NYC pizza)

We saw spring in the City...and it was GLORIOUS!

We went to the Easter Parade

where those New Yorkers put on QUITE the show.  It was

SERIOUSLY fabulous and the "costumes" took our 

breath away.  Creative, talented human beings!

We walked the Brooklyn Bridge on Easter Sunday

in the sun and soft breeze.

We saw these.

And we had THE BEST Diet Coke I've ever tasted in my life...

You're curious now, right?  How can ONE diet coke be better than all the others you've had to drink in your life?... you ask!

Well, I will tell you how.  The walk over the Brooklyn Bridge was hot, and long and crowded (Easter Sunday in New York brings lots of tourists).  We got to the other side looking for food and drink.

We were hungry and thirsty.

Have I mentioned that it was EASTER SUNDAY?

Well apparently businesses like to close on Easter Sunday so that families can spend time together.

How rude! Am I right?

NOTHING in Brooklyn was open.

NOTHING!

We were weak with hunger.

Kyle sat us all down, wilted, upon the stoop of a store (which was closed) and told us to "STAY PUT!"

He headed out in search of anything, anywhere, that was open.

We sat in the sun, miserable and hot and thirsty and hungry.

And waited.

About 10 minutes later Kyle called our cell phones and told us to RUN--he found the last restaurant open in Brooklyn.

(They were actually closing and he begged the owner to let "one last family" in.)

We found him with some luck and Josh, who also has built in GPS like his father.  (Grace and I?  Not so much--don't ever "get lost" with us, or you will be in big trouble!)

The pizza place was crowded to over-flowing.  We got the very last table.

Thanks to Kyle, who is ALWAYS looking out for everyone else.

He never complained about how thirty or tired or hungry HE was, even when he is.  It's still always about helping everyone else, first.

He ordered me up a Diet Coke (it was a teeny tiny bottle), but it quenched my thirst and gave me new energy.

We ate and laughed and the owners of the restaurant made sure EVERYONE was taken care of, even passing out free Italian Easter Cookies and hoping we had a super great day, before THEY finished up work and went home to THEIR families and Easter dinners.

After dinner and a diet coke, we went and sat down by the waterfront and reflected on a great day.

Now as I reflect back a whole year later, I think how lucky we've been all these years to have a dad, and husband, who puts us first.

He's always taking care of us, in sickness or health.

That's the REAL Kyle.

And he's STILL standing up!

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

will there ever be a cure?

Kyle hated the last post.

So did I.

Blech.  Double blech.  Triple blech.

So I though I would end on a positive note and introduce you

to Josh.

Have you met him yet?

You will REALLY like him.

We sure do.

Josh is our "tall son" who measures in at a cool 6'5".

(He's single ladies...at least I think he is-but he's not allowed to get married for something like 8 more years).

When his hair gets long it goes curly...he has some great brown 

eyes and he can play the piano, by ear.  Although getting him to actually play for you could be a problem.

People think Josh is shy, he's actually NOT shy at all.

I would call him "reserved".   Until you get to know him.

Then ask his friends, or family, who REALLY know him--not.shy.

He's like his father in that he's not a man/boy of many words.

But he's super (duper) smart and can match wits with almost

anyone on any subject.

He's a very sane, and rational thinker, which comes in handy (and is quite good for survival) in a house of 4 women...who may not always be very sane OR rational.  (What can we say? Hormones?)

He's got a tender heart (like his father too), but is also QUITE witty and sarcastic.  (Which we love).

He's one of the best kids I know on the planet.

Kyle is shown here with him at Josh's High School Graduation

last May.

Kyle is ALSO sporting a green shirt, which just happens to be

the "liver cancer" color.

Who knew?

He will also NEVER be wearing this shirt to chemo.

Ever.

Green is NOT a good color for chemo.

(See a previous post about "What color should I wear to chemo..." in case you're in the dark about that.)

Speaking of liver cancer and sons...(were we speaking about liver cancer?) Oh yes, I think we were...Speaking of it(and sons), Kyle worked on a committee with a sweet lady named Ann (it could also be spelled Anne--sorry Ann/Anne if you're reading this, I'm not sure on spelling.  Who knew Ann/Anne could even be a hard name to spell?)

Dorien, on the other hand...?  I could tell you 45 years of stories about wrong spellings. And bad pronunciations.  Bad name to grow up with, for the record.  (DOOR*E*N, in case anyone is wondering!)

Anyway, where were we?

Oh yes, Ann/Anne.

Ann/Anne happens to be one of the (THE) sweetest ladies I have met on this journey.  She "gets it".

She KNOWS.

Her son died from liver cancer last spring.

She REALLY gets it.  Sadly.

She came to visit us and tell his story and share some love.

It was a hard, and WONDERFUL visit.

Really wonderful.  She had wisdom and insight.

She is a great resource.

Her son?  He battled right up there with the best of them and fooled ALL the doctors.  

Way to go Tyler!

They gave him four weeks to live at diagnosis, he gave THEM 14 months.

Way to kick some SERIOUS cancer A$$ Tyler!

Way to keep those doctors on their toes!

We love good stories like this one.

I could write 3 posts about her visit, but will leave you with this story for tonight.

One day they were speaking and Tyler said to his mom (Ann/Anne) that he was SURE there would never be a cure for cancer.

His mom was somewhat shocked at this and asked him "Why?"

He replied that he thought it was because cancer teaches people

about LOVE and SERVICE and people ALWAYS need to be reminded of

those lessons.

On BOTH the giving end.

And the receiving end.

They are GREAT life lessons to keep learning.

(Though it would be nice if there was an easier way to learn those lessons)

But he had a point.  A really good point.

The amounts of LOVE and SERVICE we have witnessed in one month far surpass ANYTHING we've seen in our lifetimes.

Combined.

Times two.

Will there ever be a cure for cancer?

Who knows.

But it DOES teach us all great lessons.

This is what I'm ending with for today.

Out of our hands

People have asked how to help.

There is only so much I feel able to say "YES" to.

After that I get uncomfortable. 

Very much so.

After dinners are delivered, and my kids are pawned out, and the house cleaning is done, I have no capacity to say YES to other things.

It feels wrong to ask for, and to take help.

Really wrong.

For Kyle and I, who have managed to do so much on our own,
without asking for help...to ASK for help just feels so wrong.

Hard.

Hard.

Hard.

A few people have asked about financial needs.

In some ways I feel CANCER is a rich mans disease.

People have suggested flights to China for new treatments
and trips to the "top hospitals" here in the USA.

To be able do that, you must be able to afford more doctors, and more time, and more treatment.  You have to have the luxury of flying around the USA, and the world, chasing the latest and the greatest treatments.

And for those people, the people that can do that--that is WONDERFUL!  They are so very lucky that they have that ability.

I am truly glad some people can do this, fight that fight,
with this AWFUL disease!

I sincerely mean that.

Sincerely.

The rest of us have to make do with what we have, however.

We have to not only worry about fighting an awful disease, but we also have to worry (every day!) about the costs associated with it.

So you take an already bad thing and compound it.

But that is life, and that is reality.

That is our reality.

It's not good or bad, it JUST IS.

So to the people who I asked I have said this...

I have told them "YES, cancer is expensive" and "YES, when the time comes that Kyle can't work...well, that makes new problems that are even harder to deal with."

Hard problems compounded with terminal cancer---GOOD TIMES people!

(Insert MORE swear words here)

Thinking about all those things makes it hard to breath too.

When the day comes that Kyle can now longer work, and it WILL come, his long term disability takes 2 months to kick in, and then only covers 60% of Kyle's monthly salary.

Meaning for two months he has ZERO salary.

After that, it's 60% of normal.  Can you see where we're going
here?

(Which, for the record, is VERY typical of disability insurance-and in no way a bad reflection on my husbands workplace--a job he LOVES by the way, with people who have been NOTHING but supportive of him and our situation.  Two HUGE thumbs up for all of them!) 

But for me, who is left with all of this, it causes...

Worry.

(worry worry worry)

(and more worry)

I wish I could say we were millionaires and this would be okay.

But I cannot.  We are not. (darn it!)

We did what we thought best a zillion years ago and had a working daddy and a Stay At Home Mom.

Now it seems like a really dumb idea.

Like seriously, WHY did we ever think that would be a good idea?

But that's another bridge we will have to cross (Well I guess
it's MY bridge to cross when the time comes).

Jobs and health insurance and 4 children, OH MY!

(more worry)

Can you start to see why I'm not sleeping at night?

So what I did say to the people who asked is this,
"Someone else take this over for me and just do it!
I cannot!"

And then I had to let that problem go...It's out of my hands.

That, by the way, is STILL hard.

(Why do I have to be so proud and stubborn?)

A few friends and family members have set up a link where
donations can be made.

We are NOT asking, but people have asked if they could, and so if you were one of them, there is now a chance and a place.

(And I cannot tell you how hard it is to even type that out...)

Have I mentioned how private Kyle and I are as well?

That this is excruciating to be this "public"...but so many people have asked, and want to follow, and to know and it's not fair for all of you who love him to NOT love him, and watch him,
and know.

So we're stretching OUT of our comfort zone into our "new normal".

The thing is, the future is very uncertain.

We don't know how much TIME there is.

The statistics are not great.

And we know that there WILL be an "end"...sadly, at some point
in future.  That's the truth about "terminal cancer".

We don't know if we will be granted many weeks, or many months or even some years--there is absolutely NO predicting with this cancer.

Stranger still, as I type it out it STILL doesn't seem real.

I can type it and say it over and over and even though I know
what's coming...it doesn't feel real.

Maybe that's for the best.

Maybe I couldn't get out of bed if I knew the what's and
why's and how's and when's.

I'm pretty sure I couldn't.

So for today...

It's out of our hands and into someone else's.

That's what I've got.

Hopefully the link below works and you can click it and go
to Kyle's "You Caring" page.

Thank you to the people who took this out of our hands and just did it.

Again with the gratitude.

Always more gratitude.

Kyle and his girls.

http://www.youcaring.com/medical-fundraiser/team-kyle/50207

(ok well my link doesn't work....I will see if someone smarter than me can make it work--you can always copy and paste if you're good at that stuff.)


UPDATE:

Just to let people know the "cost of cancer"....in addition to the $4500 "out of pocket" ($1500 in co-pays plus a $3000 deductible) JUST to be diagnosed (tests, Dr visits, labs, PET scans, biopsies, CT scans, endoscopy, etc etc etc)--(we do pay this in part) we got our first chemo bill in the mail today. **One week** of chemo costs $7788.50 (of which our plan pays some, we pay some--not sure on those numbers yet). So for one round of treatment for Kyle ...(A "round of treatment" for Kyle consists of 9 weeks, 2 on and 1 off of chemo for the 9 weeks...) it costs: $46,731 (obviously *not* all out of our pocket). $46 THOUSAND dollars. That's an amazing and insane number. INSANE! And I want to throw up. I thought I would share though so people can understand the burden that really comes with this. It's emotional, physical, spiritual, mental and financial. It seems that NO area in our life goes untouched. :(

UPDATE TWO:

**Just so people don't panic--the $46K number is *NOT* our out of pocket.  That is simply the cost of one round of chemo.  Billed. Period.  It would be our cost (or someones cost) if we (or they) had no insurance, or no job, or maybe really crappy insurance.  My point is: that there is a HUGE cost to fight this disease and not everyone even gets *the choice* to fight because they are not insured, or under-insured, or without a job.  That's the part that makes me sad/mad... IMO no one should ever have to choose whether a loved one has a fighting chance because cost is an issue.

What if Kyle had had this same diagnosis 3 yrs ago?  He had no job and we had no insurance.  He was not a lazy bum who had never contributed to society.  He lost a good job and then went for 7 months without one.  Bad economy ...bad luck.  We would have had to choose between bankruptcy and treatment OR his life.  There are people making this choice EVERY DAY.  I don't have a good answer, but the question haunts me.  The fact that someone would *EVER* have to choose between their life, and the cost to fight for that life, that leaves me heart-broken.

Team Kyle

When the chips are down, you find out who your friends are.

You find out who cares about you and thinks about you.

We have found, that so far in this journey, the count is HIGH

and the people are many.

It feels so humbling.  

So humbling.

You find yourself asking, "Seriously WHAT did I EVER do in this lifetime to deserve a FRACTION of this love?!"

And you find yourself answering, well, yourself (a sure sign of trouble if you are talking to yourself!), "NOTHING!"

Here's the thing, support for us doesn't have to be something BIG.

It is the little things that count right now.

I'm thinking of dinners that have come, and lawns mowed and

houses cleaned and cards and messages and love sent.

(And a million things I haven't named).

We woke up today with our Facebook and Instagram feeds

flooded with the above image.

TEAM KYLE

People who support us and have our back and wanted us to know.

It was overwhelming (in a good way) and made our hearts so happy.

This group of ladies happens to be from an online "Mama Selling

Ebay Group" of ladies that I've known and chatted with for something like 10 (plus) years.  

I've met a few in real life, I have talked to a few more on the

phone over the years.  Some I've never seen, or met face to face.

(The joys of living in the Internet age).

We have "virtually" (via the Internet) watched all of our families grow and change over the years.  

We've had late night chats, seen new babies and watched divorces happen.  We've seen other cancer patients and had a whole array of hardships and joys come and go.

Today they stood together in solidarity for my husband and me

and my family.

A small act of love and kindness that brought tears to our eyes 

and JOY to our hearts.

Again, it's that palpable, tangible feeling in the Universe that we keep encountering when people pull together for a common cause.

We just happen to be "the cause". 

It is beauty and strength in the darkness.

It gives us hope and light to continue forward.

So to all of you, this group of ladies, and EVERYONE else who has touched our hearts so far...

We say THANK YOU!

Our gratitude can never be measured and our "thanks" will NEVER (ever ever) be enough.

Ever, even if we live to be a million years old.

But THANK YOU from the bottom of our very tender hearts.

Gratitude....

This is what I've got for today~