Sunday Drive...In Pictures.

Today after attending a missionary farewell for a friend

of Josh's, we decided to head up the canyon for a picnic

and Sunday Drive.

Utah is the home of some amazing spots.

This drive was about 1 1/2 hours from home and the

temps dropped from 100 ish to 70 ish.

We took some makings for a picnic and Ruby the doodle

for an adventure.

We drove up Mirror Lake Highway to Trial Lake.

A few things we learned on our drive today.

1. Grace likes to listen to country music in the car.

   (I, do not.)

2. Doodles like to stick their heads out the window 

   while we drive.

3.  The mountains are REALLY beautiful.

4.  Cows have affectionately been renamed "Moodles".

    We saw several Moodles on our way up and several

    "Moodle" crossing signs.

5.  Donuts taste good after lunch.

6.  Ruby the doodle had her first introduction to a body

    of water bigger than a bathtub.  She surprised herself,

    and the girls, with her ability to immediately dog paddle.

    It was a HOOT to watch her swim around the lake.

7.  What was NOT a hoot was having her shake her wet doggy

    fur all over us when she was done, over and over and over.

8.  Driving with the windows down is The.Best.

9.  Kyle is still PROFOUNDLY grateful that I am there

    with my camera taking pictures.  (200 today in a 4 hour

    window...ya, I'm a little crazy with pictures.  Always

    have been.  Grace says the only pictures you regret taking

    are the ones you DON'T take!  Amen Grace!)

10. Today was a good day.  Cancer and all.

Updated

Dr Sharma was running very late today.

It was a LONG wait.

We're sorry to the friends and family that kept checking on 
us all morning....via text.  

But thanks for checking.

Kyle's tumors have seen some more shrinkage.  Less
than last round (about 25% this time).  His blood work
is still really good and he still feels really good.

All good things.

No new cancer anywhere.

Also a good thing.

The Doctor has opted for one more round of chemo (another
8 weeks on/off), then he wants to send us to an
Interventional Radiologist to see about some targeted
therapies (like radio embolazation or chemo injected 
into the main liver tumor.)

No decisions will be made until we go through another
round of chemo.

That's our update for today.

Grateful for more shrinkage and we will keep on keepin' on.

Q&A

I've been told by people, that people, have questions.

About cancer.

This journey.

About our journey with cancer.

Still.

There is a list started on Facebook in "Team Kyle"
that I am going to dedicate a blog post or two to answering.

If anyone else that reads HERE has a question, or two,
please ask it in the comments.

(People have said you can't leave comments, you can.
You just have to have a "google" or other account to do
so...if you don't you can simply MAKE a google account
and then you can always comment.  It simply involves making
a "user name" and a adding an email and password.

If you try and add a comment and it won't let you, simply
follow the steps to create a google account...if you wish!)

Or you can email me directly and I will add your question
to the list:

dorienn@excite.com  (THERE ARE TWO "n" 's in the address.)

Or follow on Facebook at "Team Kyle", we will add you to
the page to ask ask a question.

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

Kyle said he had SUCH a refreshing night last night.
His cousin and wife were in town and they had a long
visit.  He was SO happy with their honesty and willingness
to talk about the elephant in the room (cancer, terminal)
and ask any questions they wanted.

I feel like I've said this over and over and over and you
all are sick of me.

But I will say it again:

We are very very very open and honest with everything
about our journey along the way.

We are NOT afraid to have the hard questions asked.

In fact, we would rather YOU ASK,
then assume, or guess, or gossip behind our backs.

It's a new place that NONE of us has traveled, and it's
a new place that ISN'T always easy to be...but if you 
know anything--know THIS...

We are NOT afraid of questions, or information, or sharing.

It's WORSE for us when people pretend, and ignore and
don't say a word.

Now does this mean we want to be the center topic of 
every gathering, and discussion, and social event?

HECK NO!

But we don't want you to be afraid to speak out or
ask at any given time.

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

10:45 today with Dr Sharma, who will give us the 
details of our PET scan.

My little sister said it best when she texted me about this
the other day.

She said, "It's kind of like getting RE diagnosed every
9 weeks."

Ya, and that's always super fun, isn't it?

Anyway--send your questions.  We are already looking 
forward to answering some of the FABULOUS thoughtful ones
asked on Facebook!

Peace Out.
Kyle & Dorien

New York Day 2

Our usual subway stop

This is what "Chemo Day" looks like in NYC

Norma's

Eliza*Kyle*Grace

Bread infused with sugar, topped with powder sugar, drizzled with liquid sugar.

Yup that pretty much describes breakfast at Norma's.

Although Kyle always goes "savory".

Flatiron

Black & White cookie

Subway Art

Not sure if they're speaking to me yet since I made them do this

Times Square

You can't tell but the "Preacher" behind Kyle was blessing him with health. 

(I'm teasing)  Actually he may have been proclaiming the 2nd coming of Christ

and helping the policeman behind HIM direct traffic.

Johns ceiling 

Day Two was a mixed bag of activities.

Kyle (who even with cancer is STILL insane and loves his
girls) took his girls to the early morning concert at the
Today Show.

Hunter Hayes (some teeny boper singer person --that's how
much *I* know) was singing at the free Summer Concert
Series at the Today Show.

So they got up at 5:30 A.M. to hoof it down see him.
The rest of us lazy people slept in til 7:30 and met up
for breakfast at Norma's.

Josh, who ALSO has a built in GPS like his father, 
successfully navigated the subway system and led us 
straight to the restaurant without even looking at his
phone for directions once.

How does he do that?  Leave me alone in the city and
I take the UPTOWN subway when I should be going 
DOWNTOWN.

Breakfast at Norma's (which is always the "splurge"
of our NYC trips) was amazing, like always.

The food is divine and over priced and fabulous.
Did I mention fabulous?

The little girls wanted to spend some hard earned money
(of THEIRS) at Dillon's Candy Bar....so we let them.

The girls and I saw Wicked, this was Puddy's first time
and she LOVED it.  We got the "secret" cheap seats 
that are right on the 2nd and 3rd row.  Considered
"obstructed view" (and they are at times)--but SO worth
it.

You can see the actors sweat you're that close.

They are the $60 seats mixed right in with the $300 seats.
Same row and everything.

A few "Broadway insider" websites (where I researched and found them) call them the "best kept secret on Broadway"...
A statement I definitely agree with.

In the meantime Kyle and Josh hit Katz's Deli for a HUGE
sandwich ....and some "hat" shops and some T Shirt shops.

We all met up in Times Square for the evening.

More shopping for the girls and dinner at Johns Pizza.

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

My funny story for today is actually from TWO summers ago
when Kyle graduated from his program at Columbia.

We had gone back alone for the graduation and he abandoned
me in the hotel room for meetings and dinners and luncheons...
none of which I was invited to.

(Which was fine).

I didn't know if I dared venture out alone since I was in
an unfamiliar part of town on an unfamiliar subway line
and ALONE!

(I must mention I NEVER EVER feel nervous travelling in NYC-
maybe I should, but I don't.)

Anyway, I decided to venture out and meet him for some time
in the city after his activities.

I found the subway stop and was very proud of myself for
getting on alone.

I started watching stops as we came to them and realized I
was heading UPTOWN.

I was SUPPOSED to be going DOWNTOWN. 

Oops.

Unlike Kyle and Josh, I have NO GPS, built in or otherwise.
Either that or I left it back home in Salt Lake sitting
on my bed.

So I got off the wrong train, climbed the subway steps, found cell service and started texting the following people:

1. Kyle

2. Amy (our friend that lives there)

3. Scott (our friend that works there)

and just for good measure

4. Mark (our friend that was visiting)

When one is lost,
one must cover all their bases, 
and I was completely lost.

My responses were as follows:

1.  Kyle, gave me step by step instructions of what to do
from where I stood.

2.  Amy, told me to call her.

3.  Scott, asked if I could see the Empire State Building.
(I could, but I was still lost so that didn't help much).

4. Mark, asked if I wanted to meet them and go shopping
with his daughters. (If I could have found them, that would've
been an option!)

While I was texting, and responding to texts, a kind looking
gentleman tapped me on the shoulder.

He explained HE was lost and asked if I could help him.

To which I burst out laughing and explained my predicament.

We both laughed and found a nice looking group of "bikers"
standing on the corner that looked approachable.
(motorcycles, beards, leather vests and all) 

They helped BOTH of us get on our way again.

Moral of the story?

When you get lost in New York City?  

You can NEVER have enough friends to help you out of 
your predicament.  

That's what I've got for today!

P.S. These are all AWFUL Iphone photos....STILL trying to get
my good pics downloaded...our computer (or the person
downloading-ahem-)seems to be able to only get certain pic's downloaded and not all of them from the trip.

Update waiting for an update

Friday marked the end of "Round Two" of chemo.

Another 8 week series has been completed.

This is week 9, the week we get PET scans and
blood work and visit with Dr Sharma.

We find out what that nasty little bugger is doing 
inside Kyle.

Shrinking? Staying the same? Hopefully not growing.

I feel like every single nerve in my body is on edge,
alive and quivering.

This whole waiting from week to week (for the rest of 
our lives) is exhausting and hard.

But it's like Kyle said, "We don't have a choice, this
is our new normal."

And new normal it is.

So we will keep you posted when we know the results.

In the meantime?  

Hug us!  Tell us you love us!
Tell us you're thinking about us!  Text Kyle. Email him.
Don't pretend he doesn't have cancer.

He may be feeling better, but just so you know folks?

We still wake up EVERY.SINGLE.DAY with this hanging
over our heads.

It will never go away.
The emotional burden of it all is a heavy weight to 
carry alone.

We ABSOLUTELY need to know people "have our backs" so
to speak.

And ignoring it.

Or pretending it's all gone away?

That doesn't help.

We will keep you posted.

I'm tired.

I'm tired of cancer and chemo and worrying.
It takes a lot out of a person.
And a family.

It's been a long hard week or two for us.

Harder than some of the others.

But I'm assuming this will pass, just like all the other
emotions that keep coming and going.

Updates are coming.

That's what I've got for today.

A Deep Dark Secret

I'm having a few technical difficulties with NYC pics-but I
promise I will get back to our days there soon in blog posts.

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

Today I am going to share with you one of my deepest,
darkest secrets.

Please be kind in your judgement of me when you read this.

(And again, remember it's mostly for me, and my family that
I write.)

I realized today what it is I'm the very most afraid of
on this journey.

My list of fears is long, so narrowing it down to 
a singular item is quite amazing really.

(And please know just because I list "my fears", doesn't 
negate that I have hope too.  I have hope in the process,
the journey, and the fight--but lets be realistic here too
folks...I *ALSO* have fears.  I think most people would
if they were in my shoes AND being honest.)

My list includes, but is not limited to, these things.

I am afraid of being alone, and lonely.

I like having companionship.  Even on the days when I 
don't like Kyle?  (and he doesn't like me sometimes too!)
I love having him around.  
He is, quite literally, my best friend.
I don't want to spend the rest of my life alone and lonely.
I didn't want to "grow old alone".
I wanted to "grow old together."

I am afraid of making the WRONG choice to support my family.

Work? School? Both? When? How?

People think it's all so cut and dry, looking in from the outside, but someday if you want to hear all the things we talk about on a DAILY BASIS?? 

Call me, and we can chat.

There are so many variable with terminal cancer, and my
responsibilities and what happens when? and if? and Kyle?
and kids? and how to pay? and cost v. outcome? and age?
and economy? and happiness? and time? and stopping and starting
when Kyle gets too sick to be alone, all day everyday.
and on and on and on.

Believe me when I say, "IT'S NOT SO CUT AND DRY ON THE INSIDE!"

I am afraid of doing things I haven't done in a very long
time, work & school.

I have done the "mom" thing for so long, what if I 
don't remember how to do the other stuff? I'm not 24 anymore.

I'm afraid of facing all that Kyle will go through when it
goes from now (good) to then (bad).

I'm afraid that I won't have the courage to face how bad it
can get.

Or will get.

The social worker at Huntsman reminded me on Friday,
"It won't always be this good, you need to prepare for that."

(yes, i'm trying) 
(how does one do that anyway?)
(seriously? how?)

Do you read depressing books about cancer? and dying?
Do you watch some Netflix movies where people die? 
HOW do you prepare for the worst thing ever in your life?

I remember watching my mom take care of my dying dad two
years ago.

And the EXACT words I said to her were, "Oh mom!  I could
NEVER do this!  I don't do stuff like this!"

Sigh.  From now on I will keep my mouth shut!

I'm afraid we won't have enough money for all that 
lies ahead.

ALL. that lies ahead.

Sickness. Disability. Hospital stays. No work.
No money coming in.  

Cancer is a rich mans disease.
I've said it before and I'll say it again.
Cancer is a rich mans disease.

If you're rich and you have cancer?  Or have had 
cancer? I envy you that in your journey you've had ONE
LESS THING to worry about.  

One.less.thing.  

Oh, you've still had PLENTY of worries, I know, just not that
worry added on top of ALL the other ones.

Shelley, our P.A. up at Huntsman heartily agreed with
us last week.  She said that many times, Doctor appointments
up there are people trying to work on ALL these issues (money)
in addition to, fighting for their lives.  So many issues,
she said, so many issues.  Not enough money. Not ever enough
for "regular folks".  She said it's overwhelming and sad.

And we are not rich men.  Not by a long shot.

It's always looming, hanging over my head.
What if?  What if?  What if we don't?  What if?

I'm afraid for my children and their future without a dad.

I'm afraid for all the scars that a parent dying, leaves.

What if they, my four beautiful children, somehow someway
don't survive this?  What roads will they travel down
in their heartache and loss and anger and grief.  I cannot
bear to watch anyone else suffer.
And yet, I may have to.  That is a hard cold reality.

I've heard so many stories of heartache for the kids
in this kind of loss.
So many stories. 

I'm afraid of so very very very many justified things.

I'm afraid I will loose myself, and not find a way back,
though all the pain.

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

Today a sweet older "widow" neighbor dropped off a bag of
homemade goodies.

I said, "Oh thank you!  It gives me hope to think about
you and know you CAN make it out the other side of all
of this ALIVE.  Sometimes I wonder how I WILL make it
through all of this without dying."

She looked at me right in the eye and said, "Dorien,
YOU WILL die for a little while after all of this.  
You just will."

And I think to myself....great.

In a "that's not REALLY so great" kind of way.

And inside I crumble just a little because I already 
KNEW what she was telling me.

I already knew.

And THAT is what I'm the very most afraid of.

Dying.

Not literally of course.  Don't be silly.

But I have passed through the valley of the 
shadow of death before.

We had a stillborn baby.  Our first child.

I remember the pain, the grief, the heartache and
the anguish.

I remember also WHO it was that held me up during 
those dark dark days.

Kyle.

I don't know how I will do it when we get to that point.
(alone)

I don't know how I will continue on when that time comes.
(alone)

I don't know how I will come back from that figurative
death, one that I have passed through before.
(alone)

I remember.

And I admit it. 

I am afraid to go where I have once stepped.

It is a lonely place that no outsider can reach.

And the only way out?

Is through.

That is,

My deepest darkest secret.

I.Am.Afraid.

It, the fear, doesn't rule me every hour of every day.

Mostly it claims me at night.
When I should be sleeping and cannot.

It sneaks up on me and taps me on the shoulder
every now and again and reminds me that it's waiting
patiently for me.

I.Am.Afraid.

(And not one of these things has been said to ask for pity.
That is NOT the case at all.  I am only being real.  Really
real.  Remember, it's how I do this.  Really really real. So
please don't think I'm asking for pity.  I'm not. I am 
just being honest.  As honest as I know how.  Which is 
USUALLY too honest. I've found that lots of people don't like
honesty in this.  They prefer to read blogs, and stories, with    "it will all be good" and "faith in Jesus will save me"
and "oh so happy, it will be fine" kind of stories.  

But terminal cancer has a dark side which I embrace.  

If I did not embrace it, I would be lying to myself, and my husband, and my children.)

I prefer to face it, whatever it is, head on by NOT burying
my head in the sand.

And again, ACKNOWLEDGING these things is in NO WAY saying I
don't have hope.  I have every hope that Kyle will fight this
cancer for as long as his body is able and willing.
By getting the best medical care WE can afford.  And by doing
everything within our means to fight.  And by drawing on prayers
and strength and love and hope from those around us that
hold our hands and carry us along when days are hard.

We will not quit.

We will not give up.

But I WILL admit...

...I am afraid 

...in this journey.

And that is what I've got for today.