2013, Oh What A Year!

What a year 2013 was for our family!

Seriously, who would have thought when we rested
our heads on our pillows on December 31, 2012 
and woke up on  January 1, 2013 that our family 
would see ALL the changes we saw!

Why did we ever wake up on January 1st?

(that's what I'm thinking some days-not in a
suicidal way for heaven sake, just, well you know!
or probably you don't know, and I'm so happy you don't 
have to know!  So so happy you don't.)

I think that some people have breakdowns over
this much change.  (or much LESS change)

Or are institutionalized. 

There's still hope for that....2014 here we come!

YESSSSSSSS!!!

#oneflewoverthecuckoosnest

In 2013 The Nielson Family learned new words
like:

Cholangiocarcinoma, which both the pronunciation of,
and spelling of, can quite present a challenge. 
To humans of ordinary brain power.

It's obvious we have above sub par brain power
here in the Nielson home.  And we're SUPER humble too.

#hatersgonnahate

And I have to say, somewhat proudly, we have mastered 
BOTH the speaking and writing of this word now
and can say it, and SPELL it, in 4 languages. 

With GUSTO! 

(I'm kidding of course, it's the same in every language.)

Cholangio*freakin*carcinoma 

Yup, that's just about right!

Cholangio*motherfreakin*carcinoma 

See how it rolls off the tongue?

You try it!

But just for fun, try saying it with a heavy Italian
accent, or Spanish accent, or French accent and see
what you come up with.  Maybe even throw some Pig Latin
in there and see what happens.

I'm practicing in my mother tongue of Italian.
(With my usual swear word, or seven, thrown in).

We took a crash course in Cancer 101 and 
(sadly) learned WAY more about this bloody disease
than we ever wanted to.  

#f.cancer

We learned words like:  Gemcitabine and Cisplatin.
I like how they roll off the tongue with ease now.

Gem*cit*a*beeeeeeeeene  

CIS*plat*innnnnnnnnnnnnn

YES!  high five.

We learned what a FABULOUS staff the Huntsman
Cancer Institute has.  The nurses?  Wow!
Nurses are the best.  

#huganursetoday

Dorien went back to work.

First, part time.

Then, full time.

She also went back to school.

(And in case anyone is wondering pulled STRAIGHT
A's last semester.  This semester is Math--no one
hold their breath for a repeat of those kinds of 
grades.  But you can pray for me.  Math and me?
we don't get along very well.)

Kyle went on Long Term Disability and we switched
up the 'Mama Bear' and 'Papa Bear' roles in our home.

The kids have handled ALL of these transitions
with an amazing amount of resilience and grace.

Dorien has handled it all with a bunch of mini
breakdowns, lots of swear words, and by choosing
to remain sober.  

She gets big props for her sobriety thus far.

Kyle has been through 20 something rounds of chemo.
Evil, vile poison that has been dumped into
his body to karate chop at his cancer cells.

(cholangio*frackin*carcinoma)

He has turned 50 Shades of Gray, and Green and Yellow
on chemo days and lived to tell the tale.  And
what a tale he has to tell.  Just don't ask him 
to tell you about it.

He also went all "Radioactive" on us this November
and has earned the new nick name of "Bead Boy."

We are super grateful for the release of the
new Superman movie in 2013 as well.  Since Team Kyle
has somehow taken up with the branding of Superman--
it made any and all T Shirts and Lego's and mugs
and wall art very easy to find and keep finding.

We hope the guys that invested in Superman stock
thank us for helping to fill their pockets this year.

#teamkyle  #superman

This year we also learned about human kindness
as we saw people fill our lives with goodness and love
and help and food and gifts, big and small.  Things
that made us WEEP and things that touched our hearts.

We learned about friendship, and families and 
found in some people a bond that will never be broken.
We saw people dig deep into themselves to carry 
us on their shoulders in good times and bad.

For all of them?  We are forever grateful.

We had "Trips of a Lifetime" to New York City 
and the California beach that we love.

Both places are dear to the hearts of this Nielson
clan and we made treasured memories in the places
we have come to love so very much.

We have made new friends, wives and husbands,
fighting in the trenches with us with this
same cancer.  Some of my nearest and dearest now.
People who check in with texts and messages
and treats.  Ladies who really really really 
get what I'm going through.  Yay for Facebook.
Yay for blogs and Yay for the marvelous internet
that connected us all.

#CCWives

But seriously...

#f.cancer.too

We have a dog, called Ruby the Doodle that 
helps us keep it real.  She makes us laugh.
And you know what they say about laughter.

#bestmedicine

2013 has filled us with perhaps MORE emotion than
any other year previously.  The saddest heartbreaks
and the greatest joys.  The deepest sorrows and
the most heartfelt love.

We're not sure what next year will bring.

We hope some good and happiness and joy.

We hope more time with Kyle.  We hope for more
good health and good reactions to treatments.

We don't know, but we certainly ALWAYS carry
HOPE in our hearts.

#always

This year we learned that LOVE is really, truly
the most important thing.  It's all about love.
Love is all you need.  

#love

We hope to carry that through with us for 2014.

And so on this, the eve of the eve of New Years,
and the only free time I have to write, I bring
you some quiet reflections of our 2013.

Here's to 2014---I hardly dare to say "Bring It On!"

I'm afraid of what may be lurking in the shadows
for us, but I'm hopeful that we will find some 
happiness and joy and goodness and love mingled
in with whatever else comes our way.

I'm sure I will cry some more.

I KNOW I will swear some more.

And I know that I will continue to treasure the
thing that means the VERY most to me in this entire
world...

...My husband and my children.

Here's to straight B's in math.

Chemo that keeps working.

More sunshine than snow.

More happiness than sorrow.

More good memories than bad.

2014 here we come.

Come hell or highwater.

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

Uncle Dave

During this walkabout with cancer, as I have mentioned

many times, there have been people who have stepped

into the "frying pan" with us and those who have steered

clear of the fire altogether.

This blog post is about Kyle's best friend, Dave.

He is in.  All the way in the frying pan.

It is a friendship that travels all the way back 

to High School.  A friend that did dumb things with 

Kyle like light bottle rockets in the back of a moving car.  

A friend that may or may not have dumped some pool 

lounge chairs and tables into swimming pools when 

they may or may not have gone late

night 'pool hopping' as teens.

This is a friend who has wound his way in and out of

Kyle's life at all the different stages and times.

Sometimes near.  Sometimes far.  

But always a friend.

It is a friendship that has stretched and been far apart

at times, like an accordion bellows stretched

to its widest, and then it has sprung close again

as time and circumstances have brought their lives

close again.  Time and distance have made no difference

in their bond, sometimes time and life just left

them with little time to share with one another.

This post is dedicated to Kyle's best friend,

 "Uncle Dave."

Now Uncle Dave isn't really my children's Uncle--but

after almost 10 months of Dave being around, he is

nothing but.  When he calls or visits, my girls all

yell "Uncle Dave!" with joy.  He has taken time to

show an interest in their lives.  He has taken the

time to love Kyle and I.  He is as funny as he is

practical and pragmatic.  He has made it a point to

be with Kyle each and every week at chemo, as often

as possible, as often as time and work and travel

permits.  He has made it a point to "pencil Kyle in"

his work calendar and made it a point to just DO IT.

(see last post).  And he has.  Just done it.

I don't know if I asked Dave if he would say it

has been hard.  I don't know if I asked Dave what

he would say his reasons for being here are.  But

whatever the reason, and whether or not it is hard?

He is here.  And for us?  That's all that matters.

Being here.  For us.  With us.  

He has sacrificed hours of time to help us with 

problems, both big and small.  He makes it a point

to call and celebrate good news when I get a job,

or finish a semester of school.  He makes it a point

to text when he knows Kyle and I need checking on.

He makes it a point. 

He makes it a point to call or text Kyle and check 

in when he hasn't touched base

for a while.  He has made it a point to step

out of HIS comfort zone, and be a part of Kyle's life.

He makes it a point.

Even during the worst of the worst of the worst, so far?

He's been here for us.  

I am sure at some point, things will get worse,

and then they will get worse(r). 

And I have a feeling that Dave will still be here.

He has greatly blessed our lives with his love 

and goodness and kindness and service.  He has

chosen love, when he perhaps could choose to shun.

He has chosen mercy over judgement.  He has chosen

to reach instead of to run.  He has chosen to

be a part of Kyle's journey, so that when the time

comes, he has no regrets that he didn't put in the

time.

It's not like he doesn't have a life and family of his

own.  And a VERY busy job and travel schedule.  He 

has all of those.  But he has made a choice to give

of himself to a friend that he has loved and cared 

about for years.  (Now I can hear his voice inserting

some sort of sarcastic joke right now about how

he really doesn't love Kyle, or some other funny thing.)

We have spend hours with him, LAUGHING, yes I said

LAUGHING, at chemo.  We tell stories and share memories

and make new memories and laugh and walk, figuratively,

hand and hand through this hard thing.

Together.

Kyle and I and the kids want to give a shout out to 

Uncle Dave.  And while he may not be a literal, physical

Uncle, he is quite literally Uncle Dave.

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

And sorry I stole your picture off of Facebook Dave.

Nike, just "doing it" right

I saw this great article from the New York Times
floating around the internet this past week and it
had some great reminders about cancer and what
to do, and say.  

A quote from the article as follows:

"1. WHAT CAN I DO TO HELP? Most patients I know grow to hate this ubiquitous, if heartfelt, question because it puts the burden back on them. As Doug Ulman, the chief executive of Livestrong and a three-time cancer survivor, explained: “The patient is never going to tell you. They don’t want to feel vulnerable.  And maybe they just don't have time to make a 'To Do' list to give to you.” Instead, just do something for the patient. And the more mundane the better, because those are the tasks that add up. Want to be really helpful? Clean out a fridge, replace a light bulbs, unpot a dead plant, change the oil in their car.  Show up with a gallon of milk.  It doesn't have to be big, it just needs to show you actually mean "what can I do to help?"   And something, anything, is always better than nothing.

2. MY THOUGHTS AND PRAYERS ARE WITH YOU. In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending “thoughts and prayers” are just falling back on a mindless cliché. It’s time to retire this hackneyed expression to the final resting place of platitudes, and just step up to the plate and DO SOMETHING to help someone out.  Don't know what to do? Do something nice anyway.  Groceries?  Check.  A gift card for a night out?  Check.  A phone call to actually LET them know you care?  Check.  You can keep praying and thinking, but again DOING something is where it's at.

3. I LOVE YOU. When all else fails, simple, direct emotion is the most powerful gift you can give a loved one going through pain. It doesn’t need to be ornamented. It just needs to be real. “I’m sorry you have to go through this.” “I hate to see you suffer.” “You mean a lot to me.” "I Love You." The fact that so few of us do this makes it even more meaningful."  JUST TELL THEM HOW YOU FEEL BEFORE THE CHANCES TO DO IT ARE GONE.  Just tell them."

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

Nike has a great ad slogan.

You know the one?

Just Do It.

Which echos so much of what this article says.

These three pointers are great reminders of the things
that have most helped us along the way.  Done by
the people who have stepped up to the plate for us.

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

The New York Times on recycle.

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

Although someone did tell me about a NEW "Miracle Cure"
for Kyle's cancer today.  It only costs $30,000 and
involves cannabis oil.  I'll be sending the check out 
in tomorrows mail.  

Happy Holidays From The Nielsons

  Yes, we know this will offend some people.

To you?  We're sorry. 

This thing called cancer comes with it's fair
share of heartache and joy and as Josh put it,
"This has been a year of the highest highs
for our family and the lowest of lows."

We've said it before, you have to laugh and find
humor in ALL of this...or quite simply you will
shrivel up and die from the inside out.

We want to thank so many people who have made
our holiday season, and not working season,
and cancer season just a little bit brighter
for us with love.

We're telling you....it ALL boils down to LOVE.

That's our message to you this Christmas season.

Love, it's what its ALL about.

Thank you for loving us.

Thank you "frying pan" friends and family.
Thank you for being willing to get your feet
singed just a little here in our hot spot.

You have blessed our lives more than you will
EVER KNOW by stepping into the frying pan with us
and loving us and supporting us and laughing with
us at chemo and texting and calling and loving
and caring and simply being there when we needed
someone to be there.

Thank you!

We love you!

Merry Christmas from The Nielsons.

We're giving cancer The Finger (and joyfully
giving it the finger) this year for our Holiday Photo.

And even though the photo is a repeat, well,
some things are simply worth repeating! ;)

That's what we've got for you all...

Guest Post by Cancer guy AKA "Bead Boy"

We have a guest blogger today.

Some of you may know him even.

Introducing Kyle Nielson AKA 'The Guy with Cancer'
AKA 'Bead Boy'.

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

So first forgive me for not being the eloquent writer that my wife is, this will likely be filled with misspelled words, run-on sentences and sentences that don't make sense.  I am not a gifted writer like my wife.  I would have never made it through college without my wife's editing help.  So I am sorry, but for some reason I felt the need to share a thought or two today. 

I was looking at my phone before church this morning, and on my Facebook feed was a note from a good friend I have never met. I have never met her, or her husband, but I consider them true friends. The love of her life, her dear husband, lost his fight with this F-ing cancer today.  

To read it sort of ruined my day.  And my wife's day.
(She had to hold back a lot of tears in church today).

My wife is part of a group of wives (The CC Wives) that she has connected with, all of them share the common ground of a husband fighting my same liver cancer.  The farthest diagnosis is 26 months ago (Mike, who passed away today) and the newest diagnosis was just 2 months ago.  All the husbands are around my age, and all have the same exact cancer I have. Their cancers have all moved to new parts of their bodies and all are considered stage 4, terminal. I know it's a negative shitty description, but it's the facts. 

(This is Dorien, sometimes cancer just brings out the
swear words in us, if you were here, you would understand.)

Well, Mike who is just about my age after a valiant fight of 26 months, lost the battle with cancer early this morning.  He was very similar to me in the fight, he had a great response to chemo early in his treatment, he felt strong and normal for quite a long time. The past 6 months have been a pretty steady decline with a really horrible decline in the past month.  He is a good, god fearing man, he prayed for hope, he prayed for miracles, he went to church, he had thousands of others praying in his behalf, but in the end the cancer won. It really sucks. I have no words to comfort his good wife, his 2 sons and 2 step sons, they are nothing but sad today and will be for many days to come.

So two things I wanted to share; the first, as my wife and I talked about these two people this morning and their pain and sorrow, we talked about what we could say or do to help. Flowers die, there are no magic words or gifts to give. What can you do for a wife and 4 sons when they loose a great father and husband way too early in life? The one thing I came up with for my wife is be there in two weeks and two months and two years when everybody is gone. The funerals will be done, the families will go home, the flowers will be dead, and that good wife will still be in the same pain she feels today. So I challenged my wife to be there for her friend then. And for those that read this blog and when my day comes, and it will, remember my words from today, be there for my wife and kids when the big rush goes away, their pain will not disappear for a long time and they will need the love and hugs of good friends for some time.

A long time.

Second thing, my friend fought for 26 months, he was young and healthy and had excellent medical care, chemo worked for a long time and he was very normal for a long time, but it didn't last.

This cancer is a son of a bitch and NO ONE beats it at this stage.  (Or often even earlier stages.) I am not being negative, I am not giving up, I am being realistic.  I might have a couple more good Christmases, I might be sick and completely out of it by next Christmas. So, for me, I am going to live every day like my days are limited, I am going to tell people I love them and hug people that I didn't used to hug because I don't want any regrets. I was talking to a friend at a party last weekend and I told them I know in my heart I am not going to beat this cancer but I said I can fight like hell and enjoy everyday. My hope is in the fight, not the miracle.  I hope that doesn't come across as doomsday but I have watched too many people in the past 9 months, strong people, young people, faithful god loving people, people with an army behind them, people with best attitude possible and ultimately this cancer gets them. So when people call and say let's go to lunch, I try my best to go every time. If someone says let's go sledding, or to a movie, or to Jazz game or a concert, by damm I am going.  I may not feel 100% but I am going to do my best to do and enjoy everything I can.

Last thing, some of you out there have entered this figurative "frying pan" of this fight with cancer head first and you have made yourselves part of every step of this battle, WITH us. 

Those people, and you know who you are, mean the world to me and I love you dearly.  Some of my good friends, and even family, and my wife's good friends have disappeared from my life, because of pain or because of some sense of complacency or because they truly believe all will be well, I don't know the reasons, and I can't answer for them.  To them, I say you also mean the world to me and I love you too, but I hope that you have no regrets in your connection to me.  Maybe I am thinking way too much of myself and spending time with me is not worth it or not important.  If you fall here? I still love you anyway.  Maybe
cancer is too hard.  But time will keep moving forward
and you may be left behind.

So that's what I've got for today, I hope you all have a very Merry Christmas and you get to be around people you love and you get to hug them tight.  That is my plan and I know I will look back with no regrets and lots of happy memories.  


Love to you all.  Kyle

Bad Humor

Today after reading about a friend who's spouse is
dying from cancer.

You know...

That "one thing" that happens with terminal cancer.

I looked up at Kyle and said, "I'm just not sure
how I will EVER survive this, when that time comes."

He looked at me and said, "Well, I know I sure won't!"

"Survive that is."

Then we both laughed.  And cried a little.

And he said, "Good heavens people would DIE if 
they knew the kind of jokes we made around here."

And then?

Well, we laughed a little bit more.

Bad Humor.

Cancer Humor.

I know, we're terrible aren't we?


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

It's been a while since I updated.

I've been working and studying for finals
and hosting Christmas parties and going to 
Christmas parties.

Kyle?  He's been feeling mighty fine and
helping me host and go to Christmas parties as well.

We have been surrounded by friends who love us.

Christmas is a little bit bittersweet this year.

I cannot tell a lie.

It's hard to explain to outsiders looking in,
but when you're living this, and you don't 
know what the future holds...there is always
that nagging thought in the back of your 
mind...

"Will THIS be the last Christmas together?"

"Will this be the last one Kyle is 'healthy' for?"

What will future holidays bring?

So, for now, we cherish our time.

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

I'm not gonna fib about this either
--as excited as I am to have
a job with benefits--'Full Time Job' is also a
heavy weight on my heart.

I know 'Mom' is not every ones gig, but I loved
my time as a Full Time one.

It breaks my heart just a little to leave
my family, the kids AND Kyle, for 40+ hours
a week and miss so much time.

Time, it is a precious commodity right now
and work will take me away from my family for
so.much.time.

And school will take me away for some more.

My boss said to me at work today (it was my last
day on my school job)..."Will you keep going to
school with all of this new stuff?"

I told her I was going to try my hardest.

She looked at me and said, "Some days it will
feel like you're going to die--but you won't--
no one has died yet from school and work full time.
But you have 3 heavy things on your plate, try
and push through and remember when it feels 
like it?  YOU WILL NOT DIE from this!"

She gave me a tight squeeze and wished me well.

She is a good soul with a kind heart who
isn't afraid to express love.

I like that in a person.

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

We've watched Olivia sing at Elementary Sing Alongs.

We've watched snow fall and fall.

We've snuggled and watched movies.

We've had fires in the fireplace.

I have yet to bake Christmas cookies.

I have yet to finish Christmas shopping.

I haven't even STARTED wrapping yet.

(I hate wrapping)

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

And so life goes on.

We laugh.

We move forward.

We celebrate birthdays.

We have a story about Dorien and drugs
to share some day.  (Oh and it's a good one,
you won't want to miss it.)

We start new jobs.

We take finals.

We love.

We hope.

We dream.

We pause.

We live.

We tell bad jokes.

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

A little bit of this and a little bit of that.

I Heard the Bells on Christmas Day

Last year Kyle and I discovered the "Lower Lights", a 

local Utah band made up of a bunch of local Utah 

artists who banded together to make the group the 

Lower Lights. 

They are fabulous and we fell in love.

Head over heels.  

Each Christmas they perform a magical and moving

Christmas concert at the Masonic Temple in downtown

Salt Lake City.

You laugh, you cry, you sing along.  It is a 

highlight of our Christmas season.  There is clapping

and joke telling and fedoras and beards galore.

(We've noticed musicians and artsy men can pull

of the "fedora and beard look" like no one else can.)

Kyle has often joked of his love for group member

Sarah Sample, who he says has "the voice of an angel".

(She's not very ugly either....and SHE DOES

have the "voice of an angel" to boot.)

He has said if he could have ANYONE sing at his

funeral (that he of course doesn't know or have any

slight connection to) it would be her.

I have to agree.  Sometimes I lip sync to her voice

with a hairbrush in front of my mirror and pretend

it's me.

Only, I can't sing, and I'm not lovely and blond.

But a girl can always pretend right?

She DOES have the voice of an angel.

As chance would have it, our lives intersected

via Instagram one day, and we exchanged a few emails.

She encouraged us to find her after the show this year(and 

she was quite possibly "just being nice", but when you have

terminal cancer--you jump on EVERY chance even when, or

even if, people are "just being nice".  Because what

have you got to loose, right?)

This year we went downtown to the concert with some

good friends from the neighborhood.

We find that some people are very uncomfortable

around us now, to the point of avoidance.

We think cancer makes it uncomfortable.

People don't know what do say.  Or what to do.

Or how to act. (To which the answer to ALL of the

above is: ACT NORMAL, just how you always have.)

But it's okay--we get it.  We wouldn't have

known what to do.  Or say.  Or how to act a year

ago either.

So we're SUPER grateful for those who are NOT

afraid to be around us still.  Thanks for

hanging out "inside the frying pan" as we lovingly

call it.

Frying pan friends and family??

You guys are golden.  Thanks for being

brave enough to take a singe or two to the feet

for our cause and stand here with us.

The show was JUST as lovely as last year, if not more

so.  Sarah, and the gang, sang like angels and whatever

the male equivalent of an angel is and we had the 

best time ever.

Ryan Tanner (from the group) told the heart 

breaking story of Henry Wadsworth Longfellow 

and how the song "I Heard the

Bells on Christmas Day" came about. 

(It involved horrors of watching his wife burn

to death and a child being killed and some other

stuff to horrible for me to remember right now.

Google it, it will make you cry your eyes out).

And I thought MY life was bad?? Sheesh, me and 

Henry would've had a lot to chat about.

Anyway, his point in the telling was that he found

that GREAT music, was music that could make you feel

despair and happiness in your heart all within the 

same song.  He said that any good song worth its

weight in banjo notes, or piano chords, could do that. 

Your heart could break in sadness and expand in joy.

All in the same song.

I find that the journey of cancer has been much

like a "Great Song" thus far.  

I find that many days Kyle and I,

(especially "I", as the more emotional of the two 

of us--and that is NOT correct English I am FULLY
aware of that....)

well, I find that we swing from heartache and heartbreak 

to happiness and joy in the same day, and the same 

breath of the same sentence of the same day.

We feel despair and joy simultaneously in the same

heartbeat some days.  It is excruciating and painfully

pleasurable all at the same time.

And as Kyle's story continues to play out through

chords and verses and notes that weave together over

the passage of time, we are creating a masterpiece, a

symphony and a new song.

One that breaks our hearts.

And fills us with joy.

We took Sarah Sample up her her "request"

this year and met her after the show.  She hugged us and 

told us she read our story and she hugged Kyle and

gave us best wishes as we continue this 'song'.

She was lovely and warm and kind and smiled and 

grabbed us and drew us in tightly.  It felt like

hugging an old friend, even though she is virtually

a stranger.  Her voice and her songs and her goodness

has touched our lives, along with many others.

She radiates the beauty of love and light through

her music and song.  

Kyle was thrilled to cross "Meet Sarah Sample" off

of his bucket list.

And Sarah?  If you're still reading....Kyle STILL
wants you to sing at his funeral.   One can wish

right?

So we continue on through this Christmas season, 

making memories, holding tightly to one another.

We are creating a song, Kyle's song, a song that will

be filled with happiness and despair, a song that will

lift us and break us and carry us onward.

And even as unmusical as we are in this family, this

song will be woven into the very fabric of our souls.

It will always be a part of who we are.

It may be only that we stand with a hairbrush and sing

it in front of a mirror, trying to be brave when no one

is watching, but we continue to sing the notes we

never expected to have to sing.  Notes that we do not know.

Notes that come unbidden to us every day and every night.

But because of this, the despair mixed with joy, 

in the end we know it will be a GREAT song.  A song

that will be worth remembering and replaying over

and over.

A song that will shatter us and lift us in the same 

breath.  So we continue onward, making figurative music,

in this fight of our lives.

Making music.

Moving forward.

And THAT?  It's what I've got for today.

 Us and The Jefferies, making memories.

Sarah, Eliza, Kyle and Puddy