Emergency Contact

I have one more tidbit today to share.

Remember the "cancer lens" with which we view everything now?

Remember to read: how it changes everyday life.

and NOT to read: makes us depressed all day, everyday.
(it does NOT!)

Today I went to the Elementary and the Jr High to
register kids.  Had a small snafu with Jr High (still do),
got the High School kid done online.  
College kid took care of himself.  It's amazing
how responsible College Kid has gotten lately.
It sorta freaks me out.  He even cleans his room-
have I mentioned that?  WITHOUT being asked.
Back to Jr High Kid.  Jr High kid seems
to have disappeared from existence in the online
registration system.  
She seems thrilled to be non existent
and would happily skip school.

THAT problem WILL be fixed easily. 
At least easily enough.
(Sorry Lizzie, you're off to school in a week!)

As I was filling out paperwork, here are the 
"questions I never thought about prior to terminal
and cancer"...

1.  Is child from single parent household
    (to be marked "yes" or "no").

Someday this check mark that has always been "no"
will change to "yes".  Are we then coded in the
system differently?  (Of course we are).  Sigh.

2.  Emergency contact: name and number.
    Well, of course He Who Must Not Be Named (Kyle
    NOT Voldemort) is my "go to" guy.  For now.

At some point THIS will also change.  Who will be
my emergency contact person?  For the kids?  For me?

Who will *I* call when there's an emergency?  Who
will take care of me? (I know that's so selfish to 
think about, isn't it?)  Who will take care of my
kids when I cannot be there?  

"People" keep saying that "people" will be there.
But I wonder WHO that will be?  Who wants to help
me shoulder the responsibility of parenthood and
raising 4 kids.  Because the way I see it, it will
pretty much be all me.  

See what I mean?  It USED TO BE simple.

Check "NO", not single parent household.

Emergency Contact?  Yup, that's easy.  Kyle Nielson

Are you starting to see how the 'cancer lens' 
changes EVERYTHING, even the simple stuff?

I told Kyle that what this cancer thing is teaching
me lately is, that *I* will be the one figuring out
solutions and solving problems.  There's not going
to be any "Magic Fairy" flying in to fix things
for me.

Oh how I wish there was a "Magic Fairy" who would
fix things for me.  Maybe if I close my eyes, put on
some sparkly red shoes and tap my heels together 3 times?

Nope, still not counting on said Fairy.

There is one huge burden on my shoulders and I
worry almost every single day if I can carry that
without being crushed.

(This is not even touching on the "when Kyle gets super
sick and starts to die days", THAT thought sends me
into chest palpitations.  And anxiety attacks.)

Some days I have my doubts I can do this.
My sister said I shouldn't worry, that I have a "good core".
I say even people with "good cores" crack on a regular
basis.  Good core or not, this is some hard stuff.

(Have I said "hard" enough in this post yet?)

For now?  Not single.

For now?  Kyle is still (Thank Goodness) my "go to"
guy.

For now.  For now.  For now.

Oh you cruel and devious beast you thing called cancer.

Trying so very hard to enjoy the now, 
cancer lens and all.

This is my last post for the day (hopefully)-
I'm too depressed to be writing cancer posts today.

Juxtapostition

This is what I've got for today:
Grumpy, depressed, sad and tired.

I'm feeling a little "piss and vinegar" this morning.
Warning:  This post will be depressing.

We had a great vacation to California last week.

But leaving it to come home to reality was almost too
much for me this time.  Almost.

I ALWAYS get the "beach blues" when we leave.

There is something so calming for my soul at the beach,
to leave is always painful.  Always.

This time, from the moment we pulled away, silent tears
slipped down my cheeks.

We were headed back to some hard stuff.

There is nothing else to look forward to anymore.

No more trips, or vacations in the works.
The future is quite uncertain, as you know.

Only reality, which includes school, jobs, finding a job,
figuring out my life and future, cancer, chemo, Kyle, etc,
is what presses heavy upon me.

It feels really heavy this time.  Really heavy.

Will there be any more vacations together?  
Was that the last one?

I lost my crystal ball somewhere, so unfortunately there
is no predicting.

The closer I got to home, the worse I slept.

At the beach I slept peacefully every night for the
first time since Kyle was diagnosed.

Last night, I hardly slept at all.  Back at home.

Cancer and life is an interesting juxtaposition.

All layered up and mixed together.

As much as you wish it didn't, it really does
change everything.

The lens through which we view life is always
infused with the way cancer touches us and there
is no changing that.

Please read: it changes our life, always.
Please DON'T read: it always makes us sad.

I keep explaining this, people keep NOT reading 
what I'm really saying.

People and cancer and life is another interesting mix.

I am more and more shocked (and shouldn't be) at how
many people have fled from our lives.

Without a word.

Poof.  Gone.

It's so strange to me that when we need people the most,
people cannot bear to be around us.

And cancer.  And thoughts of death.  And our reality.

I had been warned.

Cancer whittles away all but a few, it is true.

Last night, one of the few turned up at my house-
tears were streaming down my face as I emotionally
vomited on her all of my "problems" with no answers.

I asked her "WHY are you still here?  No else seems to
want to be anymore!"

She said she would always be there. I believe her.

I take great comfort in that.  
(And still don't know why she is).

I think I even said a very bad word.  
And she still loves me.

For that I am grateful.

For now, we are back to real life.

Doctor appointments and chemo this week, trying to find a
job that will let me be flexible and still support my
husband, figuring out whether or not I'm accepted into
school, finding a &$*(#*& Jr High carpool, 
registering kids for college, high school, 
junior high and elementary school,
just plain old figuring out a lot of hard things.

Grace looked at me and Kyle yesterday and said, "Gosh
I don't know how you do it--you have so many stressful
things to figure out."

We feel the same way Grace, we feel the same way.

Tomorrow will be better...but we are feeling blue today.

Sorry to disappoint, but some days suck in our new
reality.

And a really bad, depressing post, that's what I've got!

More beach pictures to come after this moment passes.

It really was a great trip.

Which is why it was so hard to come home.

Organic

Since I was old enough to write, I wrote.

Some of my earliest memories are of me gathering
clean white sheets of type writer paper (before computers-
yes, I am THAT old) and stapling them together to form
a book.

I wrote story after story after story.

It was not a thought process, it was just something
that was such an innate part of who I am.

It just was.

I'm not even sure I'm any good at it, I just like
to do it.  Now and then.

My early stories included books about....

Lollipop Trees.

and Magical Adventures.

An entirely different world of fantasy existed inside
of my head.

I wrote and wrote and wrote.

It was as organic and as natural to me as breathing.

Words flowed out of me and onto paper.

Accompanied by the somewhat underwhelming pictures
I drew to accompany my words.

In High School, I found great joy in English class.

And in college I chose "English" as my major.

I never finished, sadly either college or my major.  
I never even got into my "major" classes. 
I was too busy having fun and failing
College Algebra.

Twice.

Yes, I pretty much suck at math.  Like suckity-suck.
(Which leaves me to marvel at my son who whizzed right
through any and all math classes in high school.  He
got someone else's genetics when it comes to math.
Obviously.)

As we sat in the sand today and built a sand castle, all
of our materials were organic.

Of the earth.

Sand and rocks and sticks and seaweed and water.

Like my writing on the paper stapled together way back when,
the materials all came together naturally.

The noises of laughter and ocean waves filled the day.

Kyle and a large group of people worked and perfected
and chiseled and sculpted and raked and shoveled and
built a sandcastle that would rival any sandcastle
you have seen on the beach.

It was award winning.

It was show stopping.

It drew people in to look and point and picture take.

It had bridges and turrets and windows and moats.

Some people came back twice to show other family members
this masterpiece in the sand.

Created of the sand and rocks and shells and matter.

I watched my oldest son Josh step in and help.

He was joined by the "baby" Olivia and Grace, my oldest
daughter.

They all pitched in to get the job done.

Each person doing their part.

Working and moving with, and in, and around, and about
each other.

Flowing, simple, quietly, organic.

There were no set of instructions, no plans to follow.

And at the end of the day they had a masterpiece.

I sat and pondered our family and the nature with which
we move in and about and around each other.

Cancer has somewhat changed the flow of our family
interaction, but not in a bad way.

We still ebb and flow and move and create and love
and surround and comfort and hold and pray and gather.

The tide of our comings and goings ebbs in and out
as our lives absorb the shock of this life changing
diagnosis.

I felt simple peace as I watched my family move together
this day on the beach.

I felt that when the time comes, and it will, that my
children will step in and move to the place where they
can most help.  Most be of service.  Most keep our
castle standing tall.

In some ways it's not fair that they have to grow up
before other kids their age.  Their peers.  Their friends.
Their cohorts.  But they do, plain and simple, they do.

So today on the beach as they built I was reminded
of how we come together when we need to.

How we gather and build and evolve and change and become.

And just like the tide and the beach and the sand
and the materials--our movement through this process, this
journey, is organic and ever changing.

We grow and learn and readjust and become something new
each day, over and over.

The ebb and flow of humanity and family and love.
The magic we create by weaving in and out and about
each other...simply organic.  Simply wonderful.

It's a beautiful thing for which I'm grateful.

Well, that and sand castles!

That's what I've got for today.

Life is a Beach....

And we just LOVE a good beach.

There is something so relaxing and therapeutic about the

sound of the waves rolling in and crashing against the

sand.

Over and over and over.

For the first time in 5 months, I slept like a baby.

Or a baby that sleeps well.

Or maybe I slept like my daughter Grace, who sleeps

like a baby that sleeps well.

Whatever the case may be.  

I slept.

 As much as I'm a sucker for the beach, I'm a sucker
for a sunset.  A good sunset.
There is NEVER a bad show here.
Every night is something magical.

 The old man and the old woman (Kyle and I) enjoying a
walk to the harbor.

 Superman AKA Kyle, getting ready to boogie board.

 Just another fabulous sunset here at the beach.  Pardon
me while I gush and sigh and snap yet another photo of it.

Kyle and The Gray...enjoying a day on the beach.

 Reading a good book, or two.

 Yup, another one of those sunset things.

Josh checking out the view from the deck of the condo. Yup,

that is quite the view.  Nothing between us and the ocean.

We are giddy with joy, weak with happiness, our joy runneth over.

 Gray and her Daddy.  She grabs his hand every chance she gets.

Gray and P-Soup (Grace and Olivia) eating some Cotton Candy, 
of the ice cream variety.

We are enjoying our stay at the ocean.  Time goes slower,
the food tastes better and the scenery is fantastic.  I wish
we could freeze this moment in time forever.

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

Five Months

Grace and I were running errands in preparation for 
The Beach Trip.

She turned to me and said, "Mom it's almost been 5 months."

I said, "I don't even have to ask what you're talking
about...I know."

Since Kyle's diagnosis.

The Cancer Diagnosis.

5 months.

Some Stage 4 CC patients don't make it this far, ever.

We are reminded of that often.

We feel so lucky that Kyle is one of the ones
who has (so far) responded this well to the chemo
regimen they use in the fight against this cancer.

We feel so blessed that he is feeling so great.

We feel overwhelmingly glad that he has had so many
many many good days so far.

We feel so happy that we have had time.

And continue to have time.

So many people get REALLY REALLY ripped off when it
comes to Cholangiocarcinoma and Time.

What is it that is working for him?

The medicine?  The prayers?  His body?  His good attitude?

Why do some people have good attitudes and bad results?

Why do some people pray like crazy and die?

Why do some people have stronger bodies than him
and don't do well?

Why do some people have such a poor response to the
chemotherapy?

Why?

Why?

Why?

I honestly have no answers. 

No answers at all.

I wish I did.

Lots of other people have answers that comfort them.

Lots of other people believe they know why.

There are just SO many variables, and so many people
who "do the right thing" and STILL have bad results.

They eat the "right" food and say the "right" prayers
and do all the "right" stuff and things STILL don't 
work.

I just don't know.  Answers elude me.

I DO KNOW that we are happy and thrilled that Kyle
is doing well.

Sometimes I feel guilty that he is doing well and 
so many people don't.

Not that I want him to do bad, I don't.

Maybe it's because I feel so badly for the other people
who are NOT doing well.

Or know someday we will not be doing well.

Kyle said, "It's kind of weird thinking of time in limited
quantities.  I've now 'used up' 5 months of how much time?"

Scary thought.

We had better be making the most of it.

For now, we will take the GOOD.

And we will take the time.

And we will be making the most of it, or shame on us.

That's what I've got for today~

Coreopsis Gone Wild #hashtags_gone_wild

If you read my blog, you will know this weekend was

a "reality check" kind of moment for Kyle and I.

Monday, after the "big ugly cry", I went outside and

dug in my backyard.  #biguglycry

I am making a Peace Garden a little at a time.

I'm not even sure what a 'Peace Garden' is, but

I'm making one.  #peacegarden

At the moment, it's not very peaceful, and it's

not much of a garden...but it's coming along a day 

at a time.

I am shamelessly roughly copying my friend Amy, because 

her garden is so lovely.  It feels so peaceful.

Right now, I like ANYTHING that feels peaceful.

They say imitation is the highest

form of flattery right?  

Now if only I could copy her  tall thin willowy figure 

and long flowing hair.  I guess

there's only so much a gal can do, right? 

I have some old bricks I'm laying to make some a pathway

into the garden...so I dug out a hole for each brick

and laid them in the ground.

(I'm pretty sure this is how a real brick layer 

does it, right?) ;)

I hated how they looked (spacing) and so I RE dug them

out and laid them down again.  (Which is so odd for me,

I am hardly an anal person about things).

I liked the 2nd results better.  Phew.

It felt good to dig through my feelings.

In the evening, I moved out to the front yard.

You've heard of Girls Gone Wild right?

Well, we're having a problem with coreopsis.

  

I have been planning on tackling the overgrown curbside

bed all summer and have been too lazy.  Or too busy.

Or too overwhelmed.  Or a combination of all of the above.

Some days even simple tasks feel overwhelming right now.

With so much going on.

It's hard to explain...but I feel like so much of my

energy is focused on all of "this", that I feel

simply overwhelmed at doing "that" some days.

But THAT DAY, I was ready to rumble.

I started attacking the bed with a shovel and digging out

at least a million overgrown coreopsis plants.

We have beds full of Utah clay, 1000 pound, heavy ugly

soil.  My biceps were getting a full workout on Monday.

Apparently these flowers had taken to heart the counsel 

given to Adam and Eve (of the Bible, book of Genesis, 

Adam and Eve) to "multiply and replenish the earth."  

They had been busy multiplying all summer long to the 

point of ridiculousness in that front flower bed.

They had NO problem moving their way through all that clay.

My rhythm was pretty much stab, dig, shovel, pull, shake,

throw away, smooth the dirt and begin again.

On repeat.  Like a bad country song, over and over.

("I lost my girlfriend to my x-wife's cousins sister

at the country fair, or rodeo stable, or monster truck

rally....la la lala")

Pretty soon our garbage can was full to overflowing...

...and as luck would have it, it tipped over.

Spilling a good deal of the contents on the road.

I muttered under my breath, sweat pouring down my face,

and stabbed the shovel in our horrible, heavy, clay like

soil to go pick everything up.

At just that moment, our sweet Neighbor walked over.

Without a word, he lifted the can, filled it with flowers

and walked back to his house where he retrieved HIS garbage

can and came back over.

"Here", he said, "Looks like yours is getting full.  You

can fill mine up too if you need it."

He then looked at me, "Rough day?" he asked.

"Yup," I replied, doing my best to fight back a tear

or two that was fighting its way to the surface of my

voice, and tear ducts.  *(&#( @!(#@@ tears!  #tears

I am pretty sure I could get paid BIG money to be

a professional crier these days.

Is there any money in that?  Seriously is there?

"Should I go over and get my shovel and come help you

or would you prefer to do this alone?" He asked.

Alone please, was my answer.  Deep sigh.  Expel air.

I thanked him for his help, his offer, and for letting me

do it my way.

He walked back home and did his own thing.

#thanksJohnMarsh

I returned to doing my thing.

I then filled up his garbage can too.

There were a lot of flowers.

Later in bed that night I said to Kyle, 

"Boy oh boy does Neighbor have a good good heart. 

He came over, and just helped. 

He didn't ask if I needed help. 

He saw a need and simply met my need.

  

Simply met my need.

Pick up can.  Replace spilled flowers.

He then took it one step further (farther?)and 

ASKED if I *wanted* his help or if this was something 

I needed to do alone. 

He didn't say anything amazing.  He didn't try to "fix"

me.  He didn't do anything other than simply BE THERE.

AND HELP.  And offer further assistance.

What he did was this...

He acknowledged a need.  My need.  He saw me struggling 

and he didn't wait for me to ask for help.  

He just stepped in.  He didn't wait to be asked,

but simply did it out of the goodness of his heart.

He made sure I was okay before retreating and then 

let me work through what I needed to work through.

I was so touched by SUCH a simple gesture.

As I have been countless times on this journey.'

Simple acts of kindness.

Standing there is almost 100 degree temperatures,

facing the sun, drenched in sweat and mud and (almost tears).

A kind soul reached in and gave me a little boost.

Kyle says it's because Neighbor has 1 wife 

and 4 daughters.

Which is infinitely easier than 4 wives and 

1 daughter, right?

He says the man just "gets women!"

With 5 women, you had BETTER 'get women' 

or you could be in some serious trouble.

Have you seen the show "Sister Wives"?  

Seriously who would WANT more than one wife? 

Of course, no offense to any of my polygamist

readers (if I have any) I just don't know how you do it! 

#sisterwives 

I say its because Neighbor just has a good heart

growing inside of his body.  A good heart is 

a good thing to have growing inside of your body.

As Martha Stewart would say.  #goodthing

It's better than cancer.  

Although MY man has one of THEE best hearts 

growing inside of HIS body, right alongside his

cancer. #damncancer #goodheart

Now I'm still not sure what to do with all those daisies. 

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