Wednesday, August 27, 2014

Save The Date. Save The Date. Save The Date.

Attention friends, neighbors, co-workers, enemies,
relatives, in-laws, out-laws, family, stragglers....

We are having a special event here at the Nielson household.

On Sunday September 7, 2014 we are celebrating
18 Months PLUS One Day!

What is this "one day", you ask?

When Kyle was first diagnosed with cancer in March of 
2013, he was told he had "6-18 months" know...
to live.

Well, we are SO thrilled and happy and joyful and gleeful
and overjoyed and excited and ecstatic and happy and 
rapturous and jubilant and euphoric and giddy and elated
(and that's as many synonyms as I could think of without
a thesaurus) that we are CELEBRATING this milestone!!!!

(The 18 months PLUS ONE DAY!!! milestone!)

We are having "Salsa Sunday" at our home 
Sunday Sept. 7 from 6 PM onward.

Come give the old guy a hug and tell him you're glad
he's still here and you love him.

Everyone likes to be told they're loved and get
a hug when they've defied the odds (and even
when they haven't!)

Stay for 5 seconds, or 5 minutes or 5 hours... 

(although we all have work and/or school the next day 
so we may leave you alone in the backyard after a certain
point alone....all by yourself...but if you're good
with that?  Stay for 5 hours.)  

All are welcome.

Our home is your home.

Please bring a favorite salsa or dessert to share 
if you would like to....we would love it!


On a little more serious note, Kyle has scans next
week and results on Weds.  (you know that bloody
awful PET scan, the one where they peek inside and
see what the *#&#&@ cancer is doing inside his body)

Ya, that one.

The ones that makes me nauseous and get hives while
I wait to hear the news.  

Yup, the very same one.

Anyway, we will keep people posted.

This is where we hear how well Y 90 worked...
it's a crap shoot like always, so we keep rolling
the dice and playing the game....

Trying to embrace any extra time we've been


So lets forget about PET scans for a minute and
remember Sunday September 7 @ 6 PM here at our
house for Salsa Sunday!

YAY for salsa!
Yay for parties!
Yay for beating the odds!
Yay for Kyle!

Save The date.

That's what I've got folks, that's what I've got!

 Kyle really really wants you to come hug him!

And this is Ruby's pitiful sad face if you DON'T
come love on her daddy daddy!  Don't make Ruby sad....

Sunday, August 17, 2014

We're ALIVE!!!!!

The good news is that Kyle survived Y-90 and 
the subsequent pain and hospital stay.

And so that next Friday we packed up and headed off
to our annual beach trip in California.

It's the best.

We had all of his siblings and spouses and lots
of cousins and his parents, and my sister and family
stopped by for a day on the beach as well.

We did nothing but relax, eat, play in the sand and
ocean and build sand sculptures.

It was a top notch week.

Kyle and I were lucky enough to grab breakfast one day
with another Cholangio (new) friend Paul and his wife
Angela...she made some killer quilts for Kyle's 
Fundraiser and sent one to us as a spare.  She does
great work and it was fabulous to sit and chat with
her and her husband and hear their journey.  

They were lovely people and fingers crossed that
maybe we will all meet up again next year over 
breakfast again.

In the meantime, here are a "few" of the 1082 pictures
I took on my Iphone.  I should be embarrassed, but
I'm not. 

I like taking pictures.

In no particular order, here is our week at the beach.
We loved every.single.minute of it.

Thanks California for the great weather, the sound
of ocean waves to go to sleep to every night, sun
and laughter.

It's always so hard to leave this great place.

 Sand Tower

 Kyle's happy place
 Sand prep
 Pier Sunsets
 Kyle and his sister planning the days sand art
 Kyle LOVES (wink wink) a cheesy photo.
 Cousins contemplating life
 This was our view the night we drove in....THEE most gorgeous sky I have ever seen
 Kyle working on Sand Darth
 Street Fair Magic
 Boogie Boarding fool
 How many people does it take to build a sand sculpture? 
 Footprints in the sand
 Sand tools
 C C C Cousins
 White kids can or cannot jump
 What should I build today? He asks
 Life under the umbrella
 The night life, good times.
 Daily view, not too shabby
 Fine tuning 
 Sunsets at the Pier
 Sand Doodle
 What mom?
 Kyle and his (not twin) brother Bud.
 Finished products
 Those tools did a good job today
 The Tower
 Fish Tacos...worth a 12 hour drive for
 Grace and Puddy
 Like Father, like Son
 We love Phils BBQ
 Kyle at rest
 The whole damn family
 Sand turtle, which I may or may not have fallen on and crushed
 Super Kyle
 He's in the zone
 Fabulous flowers
 Dad Grace and Olivia
 Ice cream at the Harbor is a MUST (several times, of course)
 27 for dinner at Phils? Yes please.
 Josh and Kyle working on something
And last but not least MY VERY FAVORITE picture of Kyle.

I love how good he looks!  (He was actually starving
and exhausted here, but he pretends well and we got
some food in his belly right after this picture!)


Just FYI: 

Save the Date for Sunday Sept 7, 2014.

This will be Kyle's 18 month PLUS one day mark with cancer.

He was originally give 6-18 months to live when he
was diagnosed.....and we plan on him still being here
in two weeks.

Now he's not one for parties, weddings, birthdays or
funerals...but you had better be SURE we are celebrating
18 months and ONE DAY in this case!

We will be having "Salsa Sunday" at our house 6 pm
onward that day. 

We will provide the chips and salsa and some 
other stuff....

Open House style, bring a dessert to share.

More details to come....but we would love anyone who
wants to (and we hope SOME people want to) to come
by and hug Kyle and celebrate the fact he's still
here, when technically doctors told him he shouldn't be.

That's worth celebrating in our opinion.

So here's to beach trips!

And here's to "Salsa Sunday on September 7" (I like the
alliteration of it all....lots of "S's")

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

Friday, July 25, 2014

Bead Boy: Take Two

I am just going to give a quick update about Kyle's 
Y 90 for those of you not on Facebook and getting updates
that way.

It will be the "condensed version" because I am 

Wednesday was Y 90.

Doctors, Kyle and I all expected the exact same reaction
as last November when Kyle had Y 90 the first time.  
A little bit of time under the knife, a little
bit in recovery and then home.  BOOM.

Easy peasy pudding pie.

Last time, he didn't even crack open the bottle of
pain pills.  Last time, we kept waiting for "a side effect"
"any side effect" and nothing.

Piece o'cake.

THIS time?

Different story.

WAS UNDER ANESTHESIA due to intense pain.

This continued for hours in the recovery room and 
no matter what pill, drip, or IV push pain med they
tried nothing, seemed to touch it.

Apparently he "was fine to be discharged" (not!)

While waiting for the 32 (really just 8) post op prescriptions
to be filled he lay down on the lobby floor writhing
and weeping in ya, basically he was good to go.

We came home only to be calling the Doctor within the 
hour and headed back UP to Huntsman to be re-admittied.

Here's where ugly meets Dorien, it was not pretty.

We got to Huntsman at 8:30 and by 11 PM had been 
sitting in a room for 2 1/2 hours waiting for Kyle
to get hooked up to an IV pain pump.

He kept saying he couldn't do it anymore, and no
one was helping him at all.

No one.

Everyone seemed to be blaming everyone else for
NOTHING HAPPENING and that's when "ugly" met "Dorien."

Full force.

I lost it.

Nothing will bring out the Mama Bear in a woman like
seeing her husband weeping with pain for 10+ hours.

I yelled at the aide, our nurse, the floor supervisor
and the Doctor.

Then hid in the bathroom weeping for the next 1/2 hour.

I was soooo frustrated, upset, mad, name
it, I felt it.

HOSPITAL!!!! 3 1/2!!! Three and a freaking half hours

later!!!)  an IV was rolled in and meds were hooked
up to Kyle.

He had a "Press Every 10 Minutes Morphine Plus" Pain pump
hooked up to his arm and by 3 AM his "Rate Your Pain 
on a scale from 1-10",  which started at an 11+, was
down to a 5.

My long story isn't staying very short...but we spent the 
entire day at the hospital, and since it was a Utah Holiday
on the 24th (For the first time EVER I was grateful
for the Pioneers, none of whom where my ancestors)
I got to be with him since my office was closed.

No one knows exactly what caused the pain.

Rouge beads.  Maybe.
Right side of liver sometimes hurts
more.  Possibly.
This is just "sometimes is a side effect"... it is, sometimes.

Whatever the reason?  Kyle was miserable.  It was
the worst I've ever seen him, which was saying a lot--
since he has the pain tolerance of something inhuman.

It was NOT his incision site, that STILL doesn't 
hurt.  It was brutal, burning, stabbing, never ending,
unrelenting, non stop pain on the inside of his liver/belly

The good news?

By 7 PM last night we were discharged from the hospital,
came home and slept.  Kyle feels 1000X better today
and the pain has been easily controlled.

THIS is what we expected from Y 90, but Y 90 had
other plans for us.

Thanks to all who texted, visited, called, brought
food, sent love and hope--we so very sincerely
appreciate it.

We were in the "padded cell" kinda room (it was "shielded")
because Kyle is we had a very hard time
getting all the texts and calls and some of them
dribbled in when we finally had service again much
much later.  

(Sometimes I sat by the window to get better reception
and sometimes that worked.)

So yup, there you have it...we looked Y 90 in
the face for a second time and Y 90 tried to knock 
us down, and for a brief moment it won.

But we pulled deep with all we had and punched that
sucker in the nose....

If you see Kyle after another day or two, you may
officially hug him again, the beads will have lost
their power and he will have lost that "radioactive

But for now? 

You can call him Bead Boy and high 5 him for pulling
through strongly on one more round of Kyle vs. The Cancer.

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

Monday, July 21, 2014

Carrie, College and Y-90

I don't have a lot of time to write tonight,
I have finals to study for and take this week.

They are "due" on Saturday, but I am trying to cram
everything in by tomorrow night.


Kyle has his second round of Y-90 Wednesday morning
and I want to be available for him after that.

This past weekend we had the grand pleasure of having
Carrie Roberts visit us for a quick trip to Utah.

She is part of the "CC Wives" group we've been 
a part of for the past year or so...

(She's of fame, her husband Travis
passed away last month from cholangio and Kyle attended
the funeral....if you live under a rock or have never
read my blog?  That's who they are).

We cannot tell you how honored we were to have her
whirlwind in and out of Utah and our home.  We
loved every minute we spent talking with her, sharing
our hearts and souls.  It was such a very tender time
for both Kyle and I and there were a few tears from
us when she left.  It felt like a little chunk of our
souls had gone away.

We have a connection (sadly) that forms an instantaneous
bond....I truly believe that any of the CC wives could 
come and we would have that same bond.

We took her to Park City for the night and walked
cool mountain streets, looked at beautiful views
and talked and talked and talked and talked.

And talked some more.

She treated Kyle (and lucky me) out to THEEEE most fabulous
steak dinner I have ever had in my life.  It was a 2 1/2
hour meal if that gives you any idea of how awesome it was.

The next morning while we were at breakfast, the waiter
came over and said "You meal has been paid for by an anonymous
caller from Georgia."

Seriously how cool is that?  It gave me goosebumps
that someone would be so thoughtful...

I can only say that Carrie is obviously surrounded
by some extremely wonderful people in Georgia!


Finals for me are this week as I mentioned...

The final essay posted in my last post?

My teacher gave me an "A" and said my writing was
"exquisite".  She went on to say she had never used
that word in 20 years of teaching and it was some of
the best writing she's seen.  

I know.  I know.  I'm bragging a little.

I just love. (love love) to write and this
validated me a little bit and made me happy that
someone who "knows" considered my writing valuable.


Kyle has Y 90 on Wednesday morning.

We will keep people posted about how it all goes.

It will be about a 2 hour procedure, then recovery last
time was about 4 hours of laying still.

The go in through the femoral artery (which can bleed out
if it doesn't clot) and so they keep a super close
eye on that to make sure he can clot.

His white counts and platelets are MUCH lower this time
than last time (and remember platelets CLOT OUR BLOOD!)
so I am a little nervous about it(what's new?).

I think they will keep a very close watch on those
things and mentioned he may have to have a platelet
transfusion during the procedure to make sure he clots.

So all of you praying types?  We're asking for a few
extra prayers that this procedure goes well.

A smooth recovery is also good and we HOPE those radiation
beads blast the heck out of some more tumors in his liver and 
buy Kyle some more time with his family.

So if you have an extra prayer, good thought, bit of
love or any good vibes? 

Please send them our way this week.

We ALWAYS appreciate those things.


Off to study.

Thanks for listening.

Thanks for prayers.

That's what I've got! 

Thursday, July 17, 2014

The Day Before

A copy of my final essay for English.
A personal essay of something that has changed me....
Here you go.

The Day Before

The space between our bodies in the bed has been an ebb and flow of human tide over the years. In the beginning, Kyle and I were alone, together. Next came waves of little humans, our offspring, moving us apart in the form of infants needing to be fed. They fought for the space between us, always greedy and hungry. Toddlers washed in between us next, escaping the nightmares that had somehow found a way into the peaceful realm of their slumbers. They have retreated out of our space now as teenagers, only returning to report in after completing their nightly adventures and shenanigans. We are returning once again to empty space between us as the human tide rolls out and away, growing and swelling, into the independence of our growing children.
I wear my nightshirt of choice lately, an oversize Superman tee, which we have an abundance of in our house right now. The shirts with the Superman logo represent power and strength in Kyle’s fight with cancer. He wears these shirts each week to chemo. I climb into our empty bed and Kyle lies beside me, his breathing is as familiar as my own.  He drapes his arm across my back. A spot where it has rested so often that sometimes I forget where he ends and I begin again. His breathing beside me slows evenly, sleep has taken him.
Tomorrow is Round Ten at the Huntsman Cancer Institute, round ten of chemotherapy. First there are labs where Kyle’s blood will be drawn and put through a battery of tests to make sure he can have his weekly dose of poison.  Next we meet with Shelley, Dr. Sharma’s faithful assistant who checks on both of us: Kyle physically and me mentally. We always have a minute for breakfast at The Point on the sixth floor.  A room that is so breathtakingly, and heartbreakingly, beautiful it’s hard to believe that this is a place where people come to fill their bodies with chemo and radiation and hope.  A place that often times sees those who are beaten and facing their own mortality.  This is not us, not yet, and so our motion carries us forward and finally we head back down to the second floor, to the Infusion Room.
Here, in this room, we have eight hours dedicated to a constant drip of hope entering his body and pumping through his veins. We have our routine down. We drift through our days up here with a rhythm of our own. We move effortlessly in and out of rooms, appointments, and chemo chairs as fluid as the sea.
Sleep escapes my tired soul tonight. Some days I feel ancient, the skin I'm in tired and old.  Other days I feel powerful, ready to face and conquer my darkest fears. And these fears?  They are among my darkest.  Kyle, ever steadfast beside me, gives me strength, always the voice of reason for my troubled heart. So, on this, another eve of the fight of our lives, he sleeps and I lay restless as we both breathe in and out toward a new dawn.   
When day breaks tomorrow we will do what we always do, sometimes with many words and oftentimes with few.  Our quiet car ride to a place once unknown, and now familiar, will be broken by muted voices from the radio and the warm wash of the sun rising over the mountains.  The gentle curves and glass silhouette of the Huntsman Center will greet us as we pull up to its doors.  In fluid motions, now well known to us, we will move through our day.  There are always kind voices that greet us, needles that prod, and nurses that stick him.  There is a beeping and blinking of IV machines in the Infusion Room as they administer daily doses to people who hang their hopes on the liquids entering their veins.
            We will sit expectantly, in a place that once filled our hearts with dread.  Cancer, chemo, terminal, are all words that make even the bravest among us cringe.  There is a love and kindness there that transcends the fear.  In that place of both healing and dying, there is a feeling of familiarity, even among strangers, where people reach out and make friends with other patients they may never see again.  We have learned many lessons on this journey called cancer and greatest among them perhaps is the goodness of the human race, the kindness of humanity.
            I say “we” because although it is my husband who has the cancer, it is “we” who are taking the entire journey together.  Our entire lives are bound by one word that has changed everything forever.  That word is cancer.
            What has all of this changed in me and what has it taught me?  It has given me a new outlook on life and people in general.  It has taught me that, when the figurative tide flows out, I am the one who must find the strength within myself to carry on.  It has taught me to embrace each moment in time.  To seize and  grasp onto those moments, and live life to the fullest.  It has taught me to smile, laugh, and let the wind blow through my hair. It has shown me that love of family and friends goes to the deepest depths, lapping over us in gentle waves that soothe our very souls.  At the end of day love is the most important thing of all. This love weaves in and out and around us, buoying us up, giving us strength.  Love changes us, fills us, and lets us become who, and what, we are meant to be.  Love is the greatest gift that we can give each other.  I have learned that life can be measured in the breaths we take in and out, and in the kindnesses we show each other.
            So at the end of the day, as we climb back into our beds, that empty space is now filled with our thoughts and fears, our sorrows and joys.  It is sprinkled with conversation and ruminations of the days ahead and the days gone past. We are a little more battered and bruised from what we have encountered, but we are still standing.   I have come to know that love will conquer the tidal waves of hardship that engulf us and I have learned that I can do hard things.  I exhale and my breathing slows to even beside my husband, and soon “the day before” will become tomorrow. 

Monday, July 7, 2014

Just a practical update

Well chemo did not go off without a hitch today.

Kyle's white cells (the newborn baby white cells)
and his platelets are not loving the 5FU so much.

His white counts were technically too low to even do
chemo once again (remember we had to skip last week
as well for this problem)

After a short huddle with the doctors and pharmacists
and PA's it was decided to go ahead anyway with the 
5FU and skip one "push" of the drug they usually do.

(So if you're sick?  Don't come anywhere near our 
house right now.)

Chemo started VERY late and ran even later so I got
the added bonus of heading up after work and hanging
out with the usual suspects (Heidi, Dave and Mark).

We had a lovely heated and respectful discussion
about religion and stuff.


Kyle has been approved for Y90 and will have
it done on July 23rd to (hopefully) annihilate the
tumors on the OTHER side of his liver.

(Last November he had the right side blasted, 
now it will be the left...or maybe its visa versa?!)

Either way, his theme song "Radioactive" will be
played at full blast in his honor and he will
start answering to the nick name "Bead Boy"
(thanks Jared) once again!


After that it's a relaxing week at the beach....where
he may have no energy for anything more than relaxing.

Although he HAS been googling "Sand Sculptures" 
once again and planning which tools to take so he
and his siblings can blow you all out of the water
once again with their amazing sand skillz!


So there you have it...

A practical update.

It's what I've got for today.

Wednesday, June 25, 2014


I feel most compelled to write the poignant feelings
that tug at my soul.

Which sometimes leads me to put "pen to paper", 
so to speak, when the pull is more melancholy.

Life with cancer, as usual, has its ups and downs.

Kyle spent last Thursday at the Huntsman ER while they
tried to figure out what was wrong with him.

He woke up with a cough that would not quit and a
feeling that he could never quite catch a full, deep

Being the "almost doctor" that I am after 15 months,
I turned to my good friend "google" and was quite 
alarmed to see that cancer and chemo patients have
higher odds for pulmonary embolisms, of which his
symptoms seemed a good match.

I was at work and strongly urged him to call his doctor,
who happened to ALSO agree with my worrisome "possible
diagnosis" and they told him to hurry up ASAP so 
they could assess the situation.

After a 5 hour stint in the E.R. and a battery of 
tests (including CT scans, EKGs and blood work) Kyle
seemed to check out just fine.

They found no blood clots in his lungs and in fact,
other than cancer, could find nothing wrong with him.

That darn cancer!


Time has been slipping by with a liquid ease and haze 
that only comes with summertime.

For me, it means nothing changes--but for my family
it means sleeping a little longer and doing absolutely
nothing if they see fit.

As it should be.

We have spent our share of lazy nights (after homework
for me) sitting in the hammock and laying on the grass
in the backyard.

With the doodle of course, always with the doodle.

We have watched sunsets and planted tomatoes and
enjoyed simply being together.

There is a peace in our unhurried pace.

There is joy in simply existing and absorbing 
these moments together, drenched in the summer sun.

Time has been good to us, so far.

We are learning, more than ever, to live IN it.

In the here and now.

We've decided, all things said, it is truly a good
way to live.

To appreciate and smell and live and breath and be...




I saw a post on Instagram of a friend celebrating
an anniversary recently.

I was happy for them.

But then the tug came to my heart.

An ache of a longing so deep that I couldn't stop
what came next.

A sorrow so deep washed over me thinking of a time
that did not include...



But instead included...


And Then.


I understand that faith, and hope, and life
is so very different for everyone.

Each one of us.

And we all experience all of it through the very
lens of our own life experiences.

But for me, I cannot seem to find the joy of
faith, or hope, in the thoughts of living through
anniversaries and birthdays and my children's
life milestones WITHOUT Kyle in our life.

I am not sure why for me this is a comfortless 

Thoughts of God, and Christ, and eternities, and
family units do nothing to diminish the agony in
my heart and soul. 

When I think of "then."

Thoughts of being without this creature I call
my husband in THIS life for a finite number of 
years here on this earth.

Those thoughts crush me if I let them.

And so mostly, for now, I don't let them.

But every once in a while they peek in and steal
my joy and leave me breathless and scared
for a moment in time.


For the time being I have no good answers
and so I participate in the day to day goodness--
because it is all we have right now.

We don't know for how long, but we have it now.

And so for one more day I will inhale

and exhale and roll on the grass with the dog.

And hold the hand of the one I love.

And breath deeply the joy that comes from
simply being.

Here and Now.


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