small things

Either cancer helps you appreciate the small things in life.

OR, you're an idiot.

It's not like me to mince words.

What can I say?

Monday night Kyle, Grace, Olivia, Ruby (the golden doodle)

and I went up the road to watch the sunset together.

It promised to be a good one.

Utah can usually put on a pretty great show.

The light was right.

There were a few clouds and we wanted a few quiet moments

together.

We got out of the car and went on a short walk.

The late March air was chilly on our faces.

Kyle held the girls hands and Ruby ran ahead of everyone.

Sniffing.  Everything.

Nobody said very much, we just enjoyed being together.

The thing with cancer is,

...is that it's ALWAYS there.

You wish you could somehow swat it away...

...like an annoying fly

or mosquito.

And then it would be gone.

Squashed.

Snuffed out.

But it's not like that with cancer.

It remains buzzing around,

annoyingly,

just out of reach of the fly swatter.

Even if you don't talk about it.

It's in the back round,

lurking

waiting for you

quietly

patiently

always present.

Sometimes for a moment or two

you forget

it's there

but then it always comes back

sharply into focus

looming.

But Monday night we brushed it aside for a moment.

Swatted.

Karate chopped.

And threw in a few swear words for good measure.

And went for a walk.

And enjoyed the moment.

The sky cooperated and put on a beautiful show for us.

Not many words were said.

It was not necessary.

The dog entertained.

Grace sang loudly.

Country music! 

Country music?

Seriously...

Who's child is she anyway?

(all Kyle that girl, all her daddy)

Puddy (Olivia) skipped and thought it was a grand adventure.

It was nice to just BE for a moment.

To breath in and breath out.

To watch to majesty of nature playing out at her finest.

And we enjoyed a few of the small things in life.

And it was glorious.

Take time out, always, to enjoy the small things.

Please don't forget.

Please.

Please.

Learn from us if you must.

This is what I've got for today.

Small things.

chemo - sabi update

Yes.  Kyle gets to be the cool guy in the mask and hat.

I get to be the side kick.

(All the while trying to be politically correct!) 

As Kyle's sidekick to all his chemo appointments,
I have dubbed myself, affectionately, "chemo-sabi".

Listen, I can be VERY cheesy as well as clever all in the
same breath.

Just a quick update after two rounds.

The man is a chemo superhero, or should I say Chemo Ranger?

Is that carrying the whole theme a little too far?

He has...

NO nausea.

No vomiting.

No major ill effects (so far) other than extreme exhaustion.

And some minor side effects that haven't given him too
much trouble.

He sleeps a lot for the first few days after chemo.

But he actually feels better after two rounds than he 
has in a few weeks.

His appetite is back a little and we keep shoveling food into
him.

His cancer/chemo diet is putting us ALL to shame.  

That man can drop a pound quicker than anyone I know
without even trying these days!

MEN!

Seriously!

He's still working.  (After all we need that darn paycheck
and insurance thing he's got going)

Besides that, he FEELS good enough to work still, and he's 
not a "sit around and wait" kind of guy.

We have our off week this week, so we plan on taking full
advantage and fattening our boy up, forgetting about IV's
and the Huntsman Center (oh how we will miss you) and 
pretending we have a "real life" for a few days.

This is our new normal....

...but so far so good.

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

nocturnal

This post is very full of raw emotion.  I warned you I would

not sugar coat the bad moments.

To write for me is cathartic and healing and I will not 

apologize for the angst and pain that is very real in these words.

I will not, NOT feel.

I promise I will write of beauty and hope when I have that too.

This weekend was tough, and so I write to remember these times 

as well.

Remember how I said nights are the worst?

Well, they are.

Sleep comes sometimes in fragmented lengths of minutes and hours.

Sometimes we wake up and talk for an hour or two, or hold each

other and then go back to sleep.

Exhausted.

Last night we lay in bed and looked at the clock.

It read 9:55.  P.M.

We laughed at ourselves and said, "You know you have cancer when

you're in bed at 9:55..."

Soon Kyle's breathing was even and he fell asleep.

I don't remember sleeping, but woke at 11:30 and he was gone from the bed.

His body has new aches and pains.  

Liver cancer also causes strange body temperature fluctuations.

Sometimes he is freezing and sometimes he is flushed and hot.

He has to adjust his sleeping arrangements to help adjust 

his body temperature. 

He starts in our bed and sometimes has to move to the floor

to regulate temperature.

Hot to cool.

Sometimes he heads to the basement couch.

Cool to cooler.

At which point I always wake in a panic and call his name begging 

him to start all over in the bed.

Last night, I had a bad dream.

Three times.

And went back to sleep.

On my own.

Twice.

At 3:30 I woke again.

Another bad dream.

Guns and trains and cowboys, go figure!

The third time...

At 5 A.M., I woke again with a sob caught in my throat.

THIS dream, the one hanging on in my subconscious, was about death and dying.

I couldn't breath,

I couldn't breath,

I couldn't breath,

and I couldn't feel my husband beside me.

I called him name, dreading the fact that I was waking him--

yet needing him beside me to sooth and calm my soul.

He came, because he is Kyle, and held me.

My body racked with sobs as I tried to tell him that even 

though I was awake, the nightmare had not gone away.

And I wonder HOW I will find the strength to exist and breath

and continue when he is not here to hold me.

I share these feelings, because they are raw.

And real.

It feels like the pain has been rubbed by sandpaper this weekend.

Sometimes there are NO WORDS that can soothe me.

I desperately claw for comfort, 

From somewhere.

From something.

It doesn't come.

No prayer, or book, or meditation, or promise of hope, can fill me with the peace I desperately seek.

And so my husband holds me and tells me he loves me 

here

and now.

And this is what I've got for today...

(I'm sorry this one was so depressing, but sometimes 

cancer is depressing.)

Mood Swings

As I sift through an array of emotions from day to day,
I have felt sadness and shock and grief and sorrow and
hurt and ache and heaviness and fear.

And I've also felt joy and laughter and unity and love 
and strength and hope and I've reflected on the many feelings
this has awakened within my heart and soul.

Sometimes it is a quiet reflection in the stillness of 
a moment of time.  Sometimes it is a flurry of thoughts
that I cannot control.  Inner turmoil.

But today, today I feel ANGER.

This is the first time I've REALLY felt angry about this.

I'm sure it won't be the last.

Angry.  Angry.  ANGRY!

Like throwing something really hard and really far, angry.
(If I could actually throw ANYTHING hard or far and didn't
look like a girl doing it.)

Like yelling at Kyle and God and my kids, and ANYONE who will
listen to me yell, angry.

Like weeping and gnashing my teeth angry...even though I have
NO clue how to gnash my teeth, or what that even means really.

Gnash my teeth?

I feel like being angry, just because I can be angry.

Mark Twain said, "When angry, count four.  
                    When VERY angry, swear!"

Mark Twain and I would've been good friends I think.

&$@(*&@@)#*$* and ?><_+#&@&#*()@@@!!!

Gloria Steinem said about anger, 

                         "The truth will set you free,
                        but first it will piss you off."

The truth is Kyle has cancer, and guess what? 

That PISSES ME OFF!

I am really really mad. 
And I think it's NOT FAIR! 
NOT. FAIR.
Not.
Fair.


                    It's NOT FAIR that he has cancer!
                   
                    I'ts NOT FAIR that his kids will grow up
                    without a dad.

                    It's NOT FAIR that he will never meet                                            
                    grandchildren.  And hold them. And hug them.
                    And teach them to build Lego sets.  And
                    wrestle on the floor with them. 

                    It's NOT FAIR he will not see kids graduate 
                    high school, and college.

                    It's NOT FAIR he will not meet sons-in-law
                    and daughter-in-laws.

                    It's NOT FAIR that he will leave me alone to
                    raise 4 children and all the joys and sorrows
                    that come with that.

                    It's NOT FAIR that all my children's friends
                    LOVE him and he won't be here to drive them
                    around, or joke with them.

                    It's NOT FAIR they are STUCK WITH ME!
                    Just me.
                    (Who wants to be STUCK WITH ME??!)

                    It's NOT FAIR that he will leave me alone.
                    PERIOD!!!

                    I do not like alone.  I do NOT like alone!
                    It's NOT FAIR.

                    It's NOT FAIR that he will miss dates and
                    dances and holidays and Sunday dinners and 
                    Lucky Lilacs and birthdays and anniversaries.

                    IT'S NOT FAIR!

                    Life is not fair. 

And then I think what will being angry really solve?  

Nothing really. And so I sigh...deeply.

I will move past anger.

For now.

I will keep sifting until I find a new emotion.

Or maybe I'll go throw a few plates at my garage really
hard just to listen to them shatter on the bricks.
                    
This is what I've got for today.

Because a blog without pictures just isn't a blog...

Kyle is a pretty private guy (understatement of the year).

He isn't a fan of photo's or being the center of attention.

He is also not a man of many words.  He is kind of like a "gentle giant."  Quiet, kind, and the hardest worker I personally know.  He would give you the shirt off his back and not even give it a second thought. He never, ever ,ever complains if he has to help someone or do a job.  He just picks up his shovel, or cleaning rag, or tool and hops in his car and goes off to lend a hand. 

Happily, and without complaint.

He is a great big kid at heart and usually more comfortable playing Lego's with his nieces and nephews than

talking to the grown ups.  He would rather take six 18 year old boys and his son on a hike in Zion National Park than have to chit chat at a dinner group with "real people."

The greatest loves in life are his family and his children.

Nothing else comes a close second. 

So this whole cancer

thing and having people pay attention to him is hard.

And humbling.  It's a new thing for him to cry openly

in front of people and he keeps saying, "I hate telling

people this news...I just feel like I'm ruining everyone

else's day."

(Yes, never mind that it's "ruining" HIS life--he's 

MORE worried that he's making other people  sad--

Typical Kyle.)

I keep telling him, along with everyone else, that he

should feel good to know that so many people love him

and care about him.

That, also, is humbling.

I pretty much travel with a camera attached to my hip,

or hand, or IPHONE.  I am (now) extremely thankful for

the 1000's of pictures I have taken over my lifetime.

(Even for the 5342 pictures I took last year on our

beach trip...My family has made fun of me for years and

moaned and groaned about all my picture taking...The only

thing I have to say to you all now is "HA!")

Two Sundays ago I snapped a few of Kyle 

and "his girls".....

Olivia (9), Kyle and Ruby the doodle

Eliza (13) & Kyle

Grace Catherine (16) and Kyle

This is USUALLY what we get

Group hugs

Me and the old man...seriously?

This week we had a fun surprise in the mail from

some dear friends in New York City.

She called it a "vacation in a box".

We called it dang good Italian food!

She sent a sampling of cheeses and meats 

from one of our favorite places...Italy!

Kyle and I met there 24 years ago serving missions.

Kyle and the girls testing all the food.

Along with crazy cancer cures, our sweet friend and 

neighbor Sam brought Kyle some Tab to try.

You know, since Kyle can't stomach Diet Coke

anymore.  Sam, the Tab just isn't cutting it either.

Although Josh did crack it open and give it a thumbs up-

what do you know? Maybe you have a new convert on your hands!

And lastly, the joys of simple things...

After his endoscopy, the Doctor said his stomach looked

clean, but he would send the biopsy report just to verify

100% that things were good.  It's a good mail day from

a doctor when the letter starts with, "I'm happy to report...."

We are HAPPY to read that report.

(Even though they spelled his name wrong...)

Crazy side note:

Kyle is officially named "Mark Kyle Nielson" but has NEVER EVER

gone by Mark...well, with all the doctor-y things everything

is in his "legal name".  It drives me crazy at every 

appointment, and check up, and blood draw, and lab test to 

hear them say, "Mark...."

We keep telling them it's "Kyle", but he remains Mark.

And we keep thinking, "Who the heck is Mark?"

I guess Mark is his cancer name.

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

Instagram

Just in case anyone is interested...

I documented "Round Two" of chemo on my Instagram feed.

I love pictures and the stories they tell.

It's nothing fancy--but if you want to check it out

my Instagram feed is:  thebompie4

It's not private.  

Go take a peek if you want.

Today was a good day.

walking into the dark

"To go into the dark with a light...is to know the light.

To KNOW the dark, go dark.

Go without sight, and find that the dark too, 

blooms and sings,  and is traveled by

dark feet and dark wings."

~Wendell Berry

I read that quote yesterday and loved it.  It FEELS like what we

are doing.  Walking into "the dark" eyes closed, head on.  Turning off our proverbial light and giving our power over to the unknown.

The "dark."

The incredible thing, the wondrous thing, with this experience called cancer is the unexpected beauty in this dark place.

Rich, deep, real beauty.

We are finding that this "dark place" does indeed "bloom and sing" and is traveled by many good people willing to walk here with us.

A friend last night said to us, "Some people will be willing to walk into the dark with you and embrace it.  Lean on them.  Other people will not be able to "go dark" with you....it is because, Kyle, you face the one thing everyone fears...your mortality."

To those who are holding our hands in the "dark place" as we travel....Thank you.  You help make this experience bearable,

and even beautiful.  In some strange and wonderful way.

This is what I've got for today.

Onward to battle.