A Birthday Tribute to Our Dad! We Love You!

Happiest of Birthdays to our very own "Superman"

Kyle Nielson!  We are SO very glad you're here with

us to celebrate #45!  We love you!  Thank you for 

showing us courage and facing the hardest of things

head on.  Thank you for loving us unconditionally--always!

Without fail.  No matter what.

Thank you for your very best example of hard work, 

service and love for all mankind.  No matter what.

You are a true hero Kyle, for your rise each time you

fall.  You never quit.  And you encourage those around

you to shine and be the very best kind of people!

We Love You,

Dorien Josh Grace Eliza Olivia and the dog, Ruby.

To radiate or not radiate?

That is the question.

And here is the mini update...

Mini Update: Kyle has been approved for the Y-90 

radiation treatment. The review from Drs has been 

completed, insurance has approved and the ball is 

rolling! It's official. Don't have all the details yet, 

but will let you know when I do.

First on the agenda? 9:30 am tomorrow--on Kyle's 

45 birthday --we have a CAT scan. We're planning on 

partying hard with the CAT scan liquid he has to drink.... 

Thanks for all your support peeps. 

Well HE is anyway.  (partying hard with CAT 
scan "juice".)

Someone asked how I was doing "all of this" 

(well several people).

Here's how:
I work.
I come home.
I weep.
I wipe my nose.
I get up and do homework.
I repeat another day.
I figure as long as I'm surviving? I'm allowed all 

the crying I need to make it through. 

Onward and upward. To radiate or not radiate. 

Radiate it is!

They will scan him, map him and radiate him.

Dates will be announced when we know things

for sure.  Keep us in your prayers and THANKS
for keeping us in your prayers.

I was planning a full blown nervous breakdown

this week, but that has been averted for now.

Mercy

For part of my job training the past few weeks, 
I have traveled to different schools across the valley.

I have met educators that are beyond amazing considering
the job they do each day, the children they work with
and the pay they receive.

They are an inspiration to me.

Amid the chaos of working with non verbal autistic
children and behaviorally challenged kids under the 
age of 10, there is usually not a lot of time to talk 
with the other grown ups in the room.

We are too busy chasing and running and putting
out fires and cleaning up messes and wiping off
spit and cleaning up vomit and prying jaws off 
of other children.

By nature I am a talker.  I love to get to 
know people and hear about what makes them who they are.

Last week I met a teacher who shared with me a bit 
of her "life story".  

Because we ALL have one, don't we?
A story, that is.

Her husband died suddenly in an accident a few years
back.  She said one minute she was talking to him,
planning a family vacation,
and the next she was receiving a call that he had
been in a serious accident.

Then he was in the ER, and then he died.
All within a matter of moments.

She shared with me that her biggest regret in the
years that have passed is "Mercy".

By definition Mercy is "compassion or forgiveness
shown toward someone whom it is within ones power
to punish or harm."

Compassion. Grace. Charity. Forgiveness. 
Humanity. Love. Mercy. 

We all experience the need in our lives to be both
on the receiving end, and the giving end, of mercy.

I found it interesting that this was the one thing
that had haunted her more and more as the years 
pressed on.

She talked of harsh words, forgiveness not freely
given, arguments that were not worth their time
or energy.  Larger grievances, that were within
her power to forgive, haunted her as well.

She reflected that we often are quick to pass 
judgement on those we love and know, and those
we don't even like or care for, when it is within
our power to show them mercy.

"To forgive and show compassion when it is within
our power to punish or harm."

She wondered out loud if any of us are perfect
and above reproach?  I said, that beside me, probably
no one is. (I.AM.KIDDING! of course I am,
just work with me people!)

Of all the regrets she had, this was the most
profound.  The one that still struck her to her 
very core in the deepest nights.

Do you hear me?  

OF ALL THE REGRETS SHE HAD.

ALL THE REGRETS.

ALL OF THEM.

This, this one thing, was the thing 
that haunted her.

This.one.thing.

I thought long and hard about what she said.

I thought long and hard about life, and time,
and how much, and how long, and what is left.

I though long and hard about whether or not
this would be a regret for me.

And I thought long and hard that quite possibly 
(and sadly) I may have this regret as well.

Of not being merciful enough.

When it is within my power to be so.
When it is within my power to choose.

As that one pretty famous guy who lived about 2000
years ago once said, "He that is without sin 
among you, let him first cast a stone."

When it was within His power to condemn and judge
and cast away, He chose instead to show mercy.

Over and over and over.

For those of us who like to call ourselves
Christians, and say we believe, it is a pretty
powerful principle.

I don't usually like to go "all religious" here
but after speaking with my new friend and marinating
on her thoughts for the past few days, this one thing
really resonated with me.

My husband is not perfect.

Nor am I.

And he's going to die.  

Not today. Or tomorrow.  Or next week.  
But sooner than we had once anticipated.  

(son of a gun!)

When it has been within my power to show mercy,
have I done it as quickly as I could?
Or should?

Where do ALL of us stand on this one beautiful,
powerful principle in our lives?

Are we quick to judge and condemn?

Or do we instead choose to show mercy and forgive?

I'm not going to leave anyone with an answer tonight.

I'm only going to ask the question.

But I do know what I'm going to do with the time
we have left.

I know what I'm going to try harder to have.
And to show. And to live.

The power is in me.
The power to choose.

Forgive or punish.
Show compassion or harm.

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

I've got a lot to work on.
How about you?

Much Ado About Nothing...

Not that this kid is nothing.

But he certainly isn't a post about cancer.

Phew!

That is Josh. 

Our handsome oldest 6'5" tall son.

Today is his birthday.

The BIG 2.0.

Just a shout out to a great person, a wonderful

son and brother who happens to live in our house.

He has a wicked sense of humor.  He is quiet, until

you know him. He is brilliantly intelligent and "gets"

stuff like Calculus 3 and Physics and things that

make ZERO sense inside my mind.

He's artistic and can play a song on the piano

by ear (although getting him to do it is another

matter).

Growing up with 3 feisty sisters and one semi-feisty

mother (oh alright, I am a "full on feisty") I have

always said he will either make the BEST husband

ever (tampon aisle and all) OR he will never get

married.

He says that's not happening until he's 28 at least

and I'm good with that just so you know.

He likes to think outside the box and he may

surprise you in many ways.

He has a good heart and has really stepped up

to the plate in our home in the midst of 

"shoes dropping" right and left and all over 

the place.

So just a Happy Birthday shout out to my 

favorite son.

Who just happens to be my ONLY son too.

It's birthday season at our house.

Three down, 1 to go.

The last one would be the 'cancer guys' birthday 

next week.  We're SUPER happy he's going

to be around to see 45.

That, as Martha would say, is a GOOD THING!

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

Transition...

By definition, "transition" is the most difficult  phase of labor for most women. Physically, a mom is experiencing contractions  2-3 minutes apart, lasting 60-90 seconds, and are  very strong in intensity.  Contractions may even "piggy-back" which means  one contraction may start to fade away and another  one comes along immediately.  During this phase she may notice nausea, vomiting,  burping, or hiccups; shaking; hot/cold feelings;  fatigue; and sensitivity to touch.  Emotionally, moms can become restless, irritable,  discouraged, and confused.  She may find that she focuses inward as she works  with her labor.  She may have a hard time communicating her wishes.  This is the point in labor when she usually needs  the most support. During transition, labor support is crucial for the mom's physical and emotional well-being.  --------------------------------

You may wonder what pregnancy transition
and my life have to do with each other.

So let me explain.

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

I woke up this morning at 5 something and laid in 
my bed quietly.  

I thought to myself...

"How did I get here?"

"When did this become my life?"

"How?"

"How did my husband end up with terminal cancer?"

"How did this become my life?"

How did things change so quickly from 
comfortable and known...

to

Hard and unknown?

How?

I was thinking about all these changes.

This transition in our life.

And it reminded me of the second stage of
labor, the time when your body is getting ready
to give birth.

Contractions, or changes, are coming fast 
and furious.  Sometimes piled one on top of 
the other.  It seems like every day there is
a new, painful and difficult change in our life.

The physical symptoms of transition are also
mirroring real pregnancy transition.  Feelings
of anxiety, stress, sickness, loss of appetite,
shaking and fatigue.

It's 7:35 pm here and after a full day of work 
and a few hours of homework, there is nothing more
I would rather do than fall into my bed
and go to sleep.  

I am spent.

Emotionally. Physically. Mentally and Spiritually.

Kyle is tired as well after his long day of
chemo yesterday.

We are exhausted.  This is our reality
day after day after day.

I long for days of a past life I cannot 
quite remember anymore.  

Days of carefree innocence.

Pre-cancer days.

Some days I feel restless and emotional,
irritable and confused.  Today at work,
tears welled in my eyes several times
and I had to distract myself to continue
on.  Sometimes I could only do things
in 5 minute increments. 

Breath in.  Breath out.

And the contractions keep coming.
Overwhelming my heart and mind and soul.

We have a hard time expressing what our needs
are, and how they can be met.

Because, at this point in our "labor" there
is no one that can step in and remove the pain
of change. No one can fix the past, the present,
and all that lies ahead.

"During transition in labor is the time when 
the laborer  needs the most support--it is crucial 
for her physical and emotional well being."

I cannot tell you how much the transition phase
of childbirth mirrors my life at this very moment.

I feel like I am in the very long, very emotional
and very hard process of giving birth to one last
child.  One last time.

This time the process will not be quick. 
It will not end with a beautiful pink new baby
swaddled in blankets and showered with gifts.

This time, changes will come fast and furious
until, wave after wave of new things heaped upon
us, comes to an end.

The end of all of our labors will not be
a wonderful release after months of pregnancy
and days and hours of labor...it will be
a whole new stage of changes and waves of grief.

I sometimes wonder if I will survive the 
end result.  I wonder if I will have the strength
to dig inside myself and find a power greater
than any I ever knew existed inside a human being.

I'm not even sure it's there. Inside of me.

Sometimes, I want to curl up in a ball and just
be still. Quiet.  Disconnected from time and reality.

For a very long time.

Sometimes I long for the ease of my old life
and worries that didn't cut my heart and drain
my soul and leave me empty.

I envy the people around me for their simplicity
of worries.

Worries of teens. and finances. and tests.
and what to fix for dinner. and cavities.
and broken down cars. and fights with loved
ones. and things that used to be so easy.

To fix and change and make right.

I asked Kyle the other day if I would ever
have another day in my life when there was
not the weight of stress pressing down on my
heart and mind and quite literally, my shoulders.

heavy. heavy. heavy.

The future feels daunting to me some days.
The pressure to be and do and make and provide.
To school and work and love and give.
To carry and lift and love and heal.
To breath and step and move and smile.
To have hope and faith and joy and pain.
To press forward and into the unknown
with courage and steadfastness.

Everyone else moves in and out of our labor.
Giving and taking and helping and loving--
but in the end leaving the birthing process
to us.

We have a deep and abiding gratitude for those
who have stepped so courageously, in, and held
our hands during the biggest contractions,
and loudest wails, and deepest darkest nights.

Without you, we would be crushed by the 
weight of the pains of this labor.

So while I bear my soul and let you look into
the deepest recesses of who I am right now,
I also thank you.  Those who have helped
us along every step of every wave
(after wave after wave after wave after
wave) of contractions.

Thank you for being our physical and emotional
support.  Thank you for bearing our burdens.
Thank you for helping to bear our burdens.
Thank you for hours of love and advice and
dinners and phone calls and ears and 
listening and understanding and not 
understanding and wondering if we are crazy
and STILL loving us despite our mistakes
and faults and sadness and insanity and
heartache and joy and sorrow and chemo days
and up days and down days and this whole
stinking crazy transitional time of our lives
called "terminal cancer".

These people, who have held us and loved us,
include family and children
and loved ones and relatives and associates
and strangers and people we've never met
and people that we love more than life itself
and people that we have grown to love more
than life itself and relationships that have
healed and renewed and grown and changed.

We love you.  We thank you.

And that is what I've got for today.

Flip Flop

I have thought long and hard about how to write
this post.

It has been a few weeks of many ups and downs in our
household.

In my wildest dreams I am not sure I could have
ever predicted all the changes that have come
to my family in the year 2013.

Nor would I have wanted to, if I were predicting.

It will definitely be one for the record books.

I'm not sure WHAT kind of record books, but 
a record book for sure.

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

This past week brought some more new changes.

Kyle permanently left his job and will be
moving toward Long Term Disability.

We knew this change was happening at some point,
and while it is a little sooner than anticipated,
it is part of our new reality.

That "cancer reality".

This change presents some new challenges in our
family, life, finances and future and will
require of us to FLIP FLOP the roles of traditional
"mother" and "father" from here on out.

Fortunately Kyle is ALREADY a good "mother" figure.
ME?  I'm not such a great "father" figure, I will
start working on that.

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

Kyle will now be the "stay at home dad", while
I transition into the "primary breadwinner" role.

This role carries an extra heavy burden for me
right now since I haven't got a job that will 
fill the gap as of yet.

I DO have a part time job with the school 
district, but the pay falls somewhere between 
lousy and rotten 
and they offer no benefits to part time employees.
Ever. At all.

So while it is a job, it doesn't solve some of 
the more important problems in our life right now.

Nor have I finished my schooling, yet.

Thus my plea for a full time job with benefits
in a previous post.

I need to find something that will fill the gap
for my family and provide us with a stable income
year round and some good health benefits.

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

In the long run, it will be good to start
transitioning through some of these things while
Kyle is still feeling "good enough" to help
with calls and looking and paperwork and kids.

And dinner making.  And house cleaning.
Oh wait!  Kyle already helps with those things.

It will make things easier for us to be "settled"
in our new "life style" before things get REALLY
hard and he gets "sicker".

It will make things easier for me to make
the adjustment NOW to carrying a bigger portion
of the load in our home, for it IS the 
responsibility I will carry alone at some point.

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

In other news, radioembolization has been denied
by our insurance.  We were told by Huntsman that this
is standard procedure and the doctors will meet
before a board to discuss and review Kyle's case
at which point it is USUALLY approved.

Fingers crossed for this.

We are hoping for approval so that we can move
forward with this next treatment plan.

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

So this Monday, I will head to work and Kyle
will go back on a few rounds of chemo until
the next procedure is approved.

He will go alone, which just about breaks my
heart in two that I cannot be with him.

Again, this is going to be our "new normal"
among a whole subset of "new normals" in a whole
year of "new normals" that I would never have 
predicted in a million years.

Some days I really really really HATE
"new normal!"
-----------------------------

Things in our house hold are flip flopping.

Changes are happening fast and furious.

Sometimes I lay on my back lawn, spread eagle,
and feel the autumn sun on my back and weep
and weep and weep like a big fat baby.

And then I pull myself up, sure that I have
laid in some spot where Ruby the Doodle has peed,
I brush grass clipping off of my face and clothes,
and I head inside to blow my nose.

Because as hard as this is, and as unbelievable
as our life has become in many ways, we will NOT
quit.

We will not give up.  We will fight and fight 
until there is nothing left to fight for.

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

And that my friends?  That's what I've got for today.
A long overdue update on our life.

Looking for work

Just a PSA.

Dorien is looking for a full time job with benefits.

(I have a part time job, but no benefits right now)

Just thought I would put this out in all of my
public places.

I need a job.

If anyone knows of anything, let me know.

dorienn@excite.com

I can send a resume out to you as well.

I have 20+ years of customer service experience
and 14+ years of running my own at home business
experience.

Plus lots of life experience.
(That doesn't count for anything)

Nights are out because of school this first
year.   School is very important to me.

If I don't have a nervous breakdown first
shouldering all the loads I will be shouldering.

(If I do, please come visit me in the
mental hospital.)

Please help me keep an eye and ear out.

People always ask how they can help.

Prayers are great...but right now we need some
eyes and ears on this one thing.

Thanks very much!

Love,
Dorien