Sunday, April 20, 2014

The Storm

I woke up this Easter Morning, exhausted.

To the bone, to the very depths of my soul, tired.

A tired I'm not sure I've ever felt before.

I don't know if it is physical or perhaps it is a
combination of 13 months of emotional, mental, spiritual, and physical exhaustion which penetrates deeply today.

I have been drained over and over on this journey
we call cancer.  

And I have had to reach deeply inside to pull
myself up to keep going over and over and over.

Some days?  It is ALMOST more than I can do.

Cancer is not just a physical ailment that knocks
you down.

It intertwines with every single thing you do.
Every breath you take.
Every waking thought and every moment of your day.

Even when, and especially when, you are living
and loving and trying to forget.

It hangs on, peering quietly over your shoulder.

Breathing quietly down your neck.

Whispering...."I am here, waiting patiently."

Yet, to succeed and to survive, you have to
keep doing what we have been doing...

...putting one foot in front of the other 
and marching forward.

All the while the storm pushes around you,

and through you and consumes you and takes
your breath away.

I told Kyle the thing I envy the VERY MOST
about "normal people" (family, friends, acquaintances)
is their ability to walk away from us and 
simply forget.

It's not their life and so they don't have the
burden of remembering for large chucks of time.

I don't hold that against them...it is as it should be
for them.  The forgetting.

But for us?  The remembering is ALWAYS there.

In every cough, and every sick moment, and 
trip to the doctor, and every ache, and twinge
and new symptom.

The storms rages on for us.

Sometimes quietly, a few drops on a cloudy day.

Sometimes fiercely, listening to my husband
hover over a toilet bowl, it rages.

Today we will prepare a dinner for family.

We will decorate a long table in the backyard
and sit and eat and remember and make new memories.

We will eat and laugh and love.

We will simply be, pushing the storm to the back round
of our minds for a moment or two.

I am thankful for moments of reprieve, even in 
my exhaustion.

I am thankful for love.

I am thankful for my family.

I am thankful for a husband who keeps pushing
onward and loving me and encouraging me, during this,
the hardest season of my life.

I am thankful for children who hug and clean
and help and are simply amazing.

I am thankful for family and friends that have
kept us anchored in this storm, for those that
have not run, for those that have stepped more
closely into our circle of life.

I am grateful for peace in the goodness of 
people.  And the truthfulness of human love.
I am glad that there is love in times of great
sorrow.

Grace shared this beautiful quote which I will
end with today...


“And once the storm is over, you won’t remember how you made it through,
 how you managed to survive. You won’t even be sure, whether the storm is 
really over. But one thing is certain. When you come out of the storm, 
you won’t be the same person who walked in. 
That’s what this storm’s all about.” 

― Haruki Murakami



One thing is certain, none of us are the same 
person we were when this started 13 months ago...

I guess that's what The Storm IS all about.

Happy Easter all.

Remember, it's all about love...and whether you
find that in God, a resurrected Christ, family,
friends, nature, a beautiful sunset or surrounded
by the ones YOU adore?

It's STILL all about love.

Here's to making it through storms and making
memories with those we love.

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








Saturday, April 12, 2014

It's all about LOVE....

When my dad died a few years back I remember
thinking that REALLY what this life is all 
about is love.

In the end?  Not much else matters.

Nothing else comes with us.
Nothing else remains imprinted on our hearts
by those who pass on.
Nothing else matters.

The relationships we have in this life, the love
we share, and the memories we make...those are the
things that expand our hearts, make us grow,
and sustain us through the hard times.

Love.

Someone asked me how we make it through recently
and I responded it wasn't the "typical" religious
answers that most people would probably expect
from someone going through this.

(I can only tell you our experience and this
does not lessen anyone else who makes it 
through in another way.)

I will tell you the secret of what is helping us
make it through and it's the same answer.

Love.

People.

Human beings, friends, family, strangers, people
that LOVE us and care enough to demonstrate that
love through action.

Today, for us, was once again all about, 

LOVE.


People planned and gathered and collected and
set up and invited and came to surround us with,

LOVE.

People donated and gave and supported in an act of,

LOVE.

For us.  For Kyle.  For our family.

I think that if God has hands on this earth, it
is through other people.

People who reach and give and support with,

LOVE.

Today was an AMAZING day for our family.

Singing and joking and laughter and love.
Food and friends and family and love.

It was goodness and greatness in its most pure form.

We were loved.

It filled our souls.  It lifted our hearts.
It gave us courage.  It touched the deepest parts
of our spiritual selves that resonate with the 
simplest thing called,

LOVE.

Thank you family and friends.
Thank you Sarah Sample.
Thank you organizers.
Thank you to those who donated.
Thank you to those who planned.
Thank you to those who came and supported.
Thank you Dov for telling stories and making us
laugh in the face of cancer.
Thank you to those who held us and hugged us and loved us.
Thank you for showing Kyle that he matters.
Thank you for giving us courage to face another day.
Thank for you letting us know we matter.
Thank you for loving us.

Pictures to follow.

But for now THANK YOU all.

It really really really is all about love.

The Team Kyle Fundraiser was a smashing success.

And that what I've got for today.

Friday, April 11, 2014

It Takes A Village


Just a reminder for the Team Kyle Fundraiser
tomorrow, Open House Style, at the
Holladay City Hall.

Singing, Movie Stars (I'm lying), Food (this is true), 
Silent Auction (also true),
Meet a famous Cancer Warrior (Kyle, who although
NOT famous IS pretty amazing!),
local comedian (aka Dave Davis) and much 
much more.

It literally takes a village (as we've said
1000 times) with this disease called cancer...

There is NO WAY possible to ever give enough
thanks to those who have organized and 
put together this event.  Ever.  

Countless hours of time on our behalf...
it's VERY humbling and VERY
hard for BOTH Kyle and I to be ANYWHERE
near the spotlight.  We are the "cheerleaders"
and NOT the "football stars" and MUCH
prefer the back seat and doing the giving.

Thank you from the bottom of our hearts
to EVERYONE who has given time,
energy, talents and monetary donations on our behalf.

Some of you we do not know and 
have never met....thank you for your
kindness and love.  It warms our hearts!

We love you and thank you, sincerely!

Hope to see you there!
Kyle, Dorien and family

Monday, April 7, 2014

The 5FU Man*Purse

 Listen people, you've got to look for the rainbows
in the storm right?

Rainbow: I *GET TO* call chemo 5FU
for the next while, which in and of itself would
keep me giddy for weeks (so sue me, I have the
maturity level of a 14 year old boy, it keeps me going
these days, and something I love about myself)

Rainbow:  Kyle now *GETS TO* carry a new Man*Purse
aka as 1980's Fanny*Pack for two WHOLE DAYS following
chemo every week.

He left the Huntsman today with a nice neutral black
one and you can bet your bottom dollar that we will
find something as garish and awful as possible for
future infusions.

(Remember "rainbow/storm" ratio)

Rainbow: You cannot even believe all the jokes
that him and Mark Damron came up with in a (literally)
2 minute time frame about where and how he should 
carry his pump.  It's small enough to fit in a pocket,
yet big enough....well, call Mark for details.

Rainbow:  Kyle had a steady stream of love and visitors
today.  Met with new and old friends in the Infusion Room
and was surrounded with love for an entire day by people.

It doesn't get any better than that.

Seriously it doesn't.

We had a warm dinner waiting for us when we got home
and another one coming in tomorrow.

All of these "little things" are huge to us now.

It "takes a village" with cancer.  It takes the love
and help from countless people.  Acts of kindness 
both big and small.  Efforts that make our lives
easier.  Texts and hugs and prayers and well wishes
from both friends and strangers alike.

ALL of these things are RAINBOWS in our life.

They fill our soul with courage to move forward 
through each new hard thing.

Courage on days when we cannot find it inside ourselves.

We are so very grateful for "our village" of people.

We are so grateful for the many many many many 
moments of laughter and joy we've had at chemo.

(Seems weird doesn't it?)

But there have been SO MANY.

Countless moments of laughter and joy up there

at the Huntsman.

It almost seems surreal, yet it is pure love
at its very best.  People loving and supporting
us from the best part in their hearts.

It is a wonderful thing to behold.

So for today, we celebrate RAINBOWS and Man*Purses
and another day in the fight!

And that, that's what I've got.




 Kyle happily (ahem) posing for yet ANOTHER pre-chemo photo.
Seriously, he LOVES getting his picture taken.  Don't be fooled
by his expression.  He LOVES IT!



"Cancer kicks" (aka the most hideous, wonderful, bright, ugly
shoes a human can find to wear to chemo to fight this beast of
a disease!)  AND, superman socks--a gift from Kyle's sister Heidi.  Equally hideous, and yet equally wonderful.


And here we have the 5FU.  Notice how the nurse
is in FULL HAZMAT GEAR just to touch the
stuff!  And THIS, THIS is what they put in my
husbands body.  Pretty insane, isn't it?


The 5FU Pump.  There it is.  The magic 8 ball of chemo.


And finally, we have Kyle modelling the awesome 5FU
chemo pump tucked into the amazing Man*Purse/Fanny Pack.

Yes, he will proudly have this strapped to his
body, or stuffed in his pocket, for the next 46 hours.

Sunday, April 6, 2014

Onward to 5FU!!!!

I think some people think I am making up the whole
"5FU" chemo name.  

I can assure you that I am not.

It just happens to make me giddy that I can call
chemo that for the next few weeks or months....

...or however long Kyle's body can tolerate it.

Or if it even works in the first place.

Please oh please oh please work...

Oh please.

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

"5FU"

This is what the pamphlets call it.

This is what the Doctors call it.

This is what the nurses call it.

This is what cancer patients call it.
(Although the use of the phrase "5FU" may
perhaps be a little more literal for the 
cancer patients, as it should be)

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

With each chemo cocktail the toxicity becomes
harder on Kyle's body.  

Each "next step" of chemo is generally "more toxic"
and harder on the body than the last.  (They
start with the "best tolerated" and "least toxic"
chemo's usually.)

Although I'm convinced that ALL chemos are basically
poison being dripped in to a human body to annihilate
cancer cells.

Basically, thats what it is.

Poison.

Anyway, chances are that this cocktail of chemo
will NOT be as well tolerated by Kyle, even though
he has done fabulous so far....there are some pretty
"standard" side effects with this one that most
people do not escape.

But we will report by the end of the week how Kyle does.

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

He heads back up to Huntsman Monday (tomorrow) 
to start a new round.

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

This chemo is also a little bit different than the
last one.

He will have a 4-5 hour "dose" aka infusion up
at the Huntsman and then comes the "FUN. PART."

The Fun Part is this:

With this chemo he will be strapped down with a 
"Chemo Fanny Pack"  (The "CFP" for short--I just made
that up right now, just so you know)

This CFP will accompany Kyle for 46 ADDITIONAL hours.

At Home.

Meaning he will have a continuous flow/pump/infusion
of the chemo while going about his "normal life" all
day and night Tuesday and Wednesday.

After the 46 hours are up, he will either go back
up to the Huntsman to "disconnect" from said pump
and/or have Home Health come to our house to 
disconnect him.

Doesn't that sound fun?

It sounds like it may put a kink in any sort of
romance we had planned for the week.  Or dinners
with friends.  Or a quiet nights sleep.  

I can just imagine the "whoosh whoosh" of the pump
infusing him all day and night.

So we know there will be side effects, we are just not
sure if they will hit sometime during the Monday/Tuesday/
Wednesday part of the infusion or afterwards?

Or perhaps BOTH during and after.

We face the week with a little trepidation.

Or I do anyway.

It's ALWAYS the unknown that "gets me".

I am human after all.


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

The other thing with this chemo is that it REALLY
knocks down white blood cells and platelets.

Like really really.

Which means Kyle will be more prone to infections
and sickness.

So if you're a regular in our life, we ask that
if you (or a child) are sick to keep that 
in mind and be wise in your proximity to him
during this time.

We will be taking germs more seriously this

round...

...at least I will anyway.

And I am a Germ Nazi, so you don't want to 
mess with me.

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

Regardless, the THING that we WANT to happen
is for the 5FU to KILL the cancer cells again.

(Since the other chemo has quit working, remember?)

THIS is what we wish for.

THIS more than anything is important.

THIS is what we hope for.

We always hope for more time, because no matter
HOW MUCH time Kyle gets it will not be enough.

But we will continue to try and make the best
of what we have by living each day to the fullest.

"whoosh whoosh" noise and all.

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

And that is our update for today.

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




Thursday, April 3, 2014

Biopsy Day


Today was biopsy day for Kyle.

Since (like usual) I had to work he told me he
was having him mom drop him off and leave him
for the day at the Huntsman.

That did not go over very well with me.
AT ALL.

Alone, and biopsy, and hospital stuff = no bueno
for the wifey.

So somehow our friend,  comrade and cohort in cancer
treatment and chemo days, Mark Damron, got stuck
with the job.

He picked Kyle up and took him to the Huntsman
and in usual "Mark style" (joking and funny guy)
he introduced Kyle as "his partner" to everyone
at the Huntsman from the check in desk
to the doctors and nurses doing the procedure.

Kyle kept saying "He's my BABYSITTER!"
(Since his wife INSIST he be "babysat")

There was a hiccup or two in being able to locate
a tumor to biopsy (oh yes, they are there but
apparently they "glow" better on a PET scan
and are much harder to see and locate via CT
or XRay or Ultrasound.

Thus the conundrum.

So after calling in all the big guns and
resources that they could, they finally had Kyle
roll on his side so they could draw out about
4 samples through his back.

(They went in via his back to his liver)

They even brought the pathologist into the room
so he could quickly verify whether they had
"cancer cells" or "regular old liver cells".

Since the aim was to find cells of the cancer
variety.

After a big thumbs up from the Pathologist 
on a score of some "cancer cells"
they decided to quit poking Kyle and let him rest.

Mark texted the blow by blow to me at work 
and kept asking if I wanted the video version.
(NO!)

I wonder how he used his charm and good looks
to work his way INTO the biopsy and sit in with
Kyle for the whole event when I was banned
from going anywhere near him for his last
biopsy and was banned to waiting for Kyle in 
the recovery room.

Some people have ALL the charm.

Apparently I am NOT one of them.

I am FOREVER grateful for Marks willingness
to take Kyle, text throughout the entire process,
be a 'cool head' when things were touch and go
on whether there would even BE a procedure
for a minute AND make everyone laugh in the process.

There is no way to repay that kindness in my book.

BIG Kudos to Mark!

Kyle and Mark then got left by the wayside when 
someone in Interventional Radiology "Coded" (Code Red)
on the table and about 25 doctors, nurses and people
flew in and out and left them alone.

Kyle is now home resting.  In a little pain
and a little dizzy.  I have commanded him to
bed in my "best mothers voice."

Per usual, he is hesitant to obey.

I just finished my 2nd to last math class
and all is right in the world for a minute.

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



Tuesday, April 1, 2014

Just an update for those not on Facebook

For those not on Facebook, here is a recap of our latest "Team Kyle"
post.   

After my mini nervous breakdown following Kyle's doctor visit last week... 
(I'm a fan of those by the way) I learned that the new chemo they will be putting Kyle on is called....






Wait for it....








"5 .FU."


I mean seriously, how can you go wrong with a chemo named "5 F.U."
Is there a more appropriately named drug to fight cancer anywhere in 
the history of drugs used to fight cancer?

I think ALL chemo's should be called "Something F.U."--but that's just me.

(For the record I am NOT making that up.  It IS called 5 FU...what can I
say?  A chemo drug maker after my own heart obviously.

They probably had someone they know and love die from the
darn disease (cancer) and thought to themselves...
"Hmmmm,  how can I make a drug that will echo how my heart feels about cancer?")

And of course it came to them....5FU.

When ONE FU will simply not do. 
5 will. 


Kyle's biopsy got bumped til Thursday  ....as in the day after tomorrow....due
to a scheduling glitch.  So Thursday he gets to hang out at the Huntsman
and me and my sad heart get to hang out at work.  (This is truly the worst
part about my "new life"....not being with Kyle for EVERYTHING.  It makes
my heart ache with sadness each and every time.

And then the new "FU"  chemo will commence on Monday.

We're making a plan and working towards it--gloves on.
(Seriously 5 F.U.) --we hear the side effects are "awesome", but we will take 
them if they work. Oh yes we will!

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

In other news keep your calendars open for the TEAM KYLE FUNDRAISER
on Saturday April 12 ....Open House Style 12-4.

Spread the word.
Spread the emails.
Come support all the hard work.
Swoon over Sarah Sample's voice (you will fall in love).

Thank you SO VERY much to the people who have donated to 
the silent auction.  (Someone that reads this blog donated...not
sure who, but WOW!  Thank you for your kindness).

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

In other, other news?  I have two weeks left in Math.  My finals are 
on above Fundraiser Date.  I may have lost my mind by that day, but I
will be there.  Wish me luck.

For the record?  I still hate math.  I still have not used ANY OF THIS
stuff that I am RE-learning in over 25 years.  I have no clue why math is
so important, but I am proud of myself for plugging through it this semester.

Work, cancer, children and all.  Every day putting one foot in front
of the other, I have kept plugging along.  

Now to simply pass the final.   It's comprehensive.  Pray for my mind
people, pray for my mind.

Stress + math + cancer + finals= a terrible combination.

And all that?  It's what I've got for today.  Hip Hip Hooray!