Glass Half Full....Glass Half Empty

Well, the results are in.

Kyle met with Dr Sharma and team today.

After his appointment...
Kyle texted me and said, "Everything is fine."
(glass half full)

He THEN read me the scan results and I heard
"7-8 new tumors in the liver"
and said "HOLY SHIT!"  (glass half empty)

7 or 8 NEW tumors since November when there was only 1.

Kyle said "Well there is no new cancer in any 
other organs of my body!"  (glass half full)

I am still stuck on the 7-8 TUMORS
GROWING IN HIS LIVER.  (glass half empty)

And HE is celebrating no new cancer anywhere else.
(glass half full)

Atta guy!

His lymph nodes are stable.
(We can both agree on "glass half full" here.)

The lungs have new growth as well. 
Which is probably why his cough has progressed
so much in the past few weeks.

Half full?  Half empty?  
We may call it a draw on this one.

Kyle says "Well it's not MUCH growth, so that's good".
(glass half full)

I only hear "New growth" in his lungs.
(glass half empty)

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

The Doctor wants to do a biopsy to see what
his EXACT mutation of Cholangiocarcinoma is
so he can determine what trials and what chemos
will be most effective against the fight.

(Certain genetic mutations respond better
to certain kinds of chemo regiments, so they
want to know for this reason)

There are LOTS of mutations with Cholangio, 
just FYI.

Kyle had a biopsy done originally but somehow
the tissue sample was not enough to send
away for Genetic Testing.

The doctor is trying to schedule a NEW biopsy
for Thursday or Friday and jump right into a 
new chemo on Monday.

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

I'm still spinning from all the news.
Trying to digest it all.

Kyle is seriously the MOST optimistic 
person I have ever known.  

Bless his heart.

He will spin it all to "glass half full" until 
there is no glass left to fill.

I am a more pragmatic and realistic and yes, possibly,
"glass half empty" kinda gal.

(So see we have our very own "You Complete Me"
Jerry McGuire kind of moments a lot in our marriage
where the half full glass meets the half empty one...
Sigh.  We definitely complete each other.)

I see a cancer that will eventually wipe out the life
of the man I love, the father of my children, and my 
best friend of 25 years....and I don't like to hear
words like "new tumors" and "new growth" and "biopsies"
and "trying a new chemo" ....

....which works only 50% of the time.

Kyle is CERTAIN he will be in the 50% of the 
people it works on.  (glass half full)

I want PROOF he is in the 50% of the people it
works on...and we won't have any until we are weeks
in to a new chemo and can test and scan and KNOW. 
(glass half empty)

So sue me.  I am a very practical person.

Here is what we can BOTH agree on.

We're off to another round of battle.
We shall see where it takes us.

And damn it all to hell (sorry for the 3 swears
in the post...I usually try really hard to limit
my swearing to letters like "F" and "S"....today
it was too hard)  we're off to the races again.

We have both our half full glasses and our 
half empty ones, we are bringing them together
with CLINK and yelling "CHEERS"

(or maybe we yelled something else altogether 
that I cannot type here, I'll let you decide!)

But we are together on the fight...

...regardless of whether the glass is half
full or half empty.

I guess if you add them up together, either way,
you've got a FULL GLASS!

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


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

The other sad, unpredictable part of living 
with cancer is the sudden change of plans
we have to make at a moments notice.

Kyle had two offers for trips to "Moab in the Spring"
(See his bucket list) and one concert this 
coming weekend.

All of these things have to be put on the
back burner because of sudden changes to 
his agenda.

Biopsies and being down and out for a weekend
don't mix with concerts and hiking.

Insert a sad face here.

Crossroads

After emails and phone calls and consultations,
our doctors agreed with us that the last dose of 
this chemo regiment that Kyle has been on is a waste
of time and money.

It's not working, so no need to do it.

They cancelled his chemo for tomorrow and instead 
have put Kyle in the 7:30 AM slot for a PET
scan so we can all get a peek of what's going
on inside of Kyle's body at this point.

Tuesday we have an appointment with our "2nd opinion"
oncologist to see what his plan of attack would 
be at this point and, then Wednesday Kyle meets
with Dr Sharma to discuss the results of the PET
scan and decide on a new course of action.

We are going armed with knowledge. 

We have consulted and re-consulted with numerous
other Cholangiocarcinoma patients in our network
to see what Plan B's and Plan C's have been 
followed.

We have lists of chemos that have been tried.
We have lists of side effects associated with 
the chemos that have been tried.

We are trying to be PRO-active and bring what
we know to the table from other patients.

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

Needless to say, I am a nervous wreck.

Kyle is a little worried too.

A lot will ride on what the scan says is 
happening inside of him and where and how the
cancer has spread.

I would rather be thinking about butterflies
and unicorns than cancer and scans and chemo--
but that is not in the cards at the moment.

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

They could say he needs to jump into a new
chemo as soon as Thursday or Friday.

We just won't know until the scan has been read
and decisions have been made.

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

We are at another crossroads in the 
Fight of our Life...

I have decided I am not a fan of crossroads.

But we're going to do what we've always done so 
far.

We've cried and gnashed our teeth and wept...
and clung to one another and had sleepless nights.

AND THEN, we've put our damn boots on again,
laced them up and gotten up and put one foot
in front of the other and will keep going.

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

I may hate these boots by the end of their
journey, but by george I will keep lacing 
them up and moving forward...

...even if it's with tears streaming down
my face and snot dripping out of my nose
and my heart carrying a block of cement.

I will hold Kyle's hand and we will march
forward until there is no more forward to march.

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

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

Cement Block on My Heart

I texted my friend Carrie with the news.

"Kyle's tumor marker has doubled since January."

She texted back "I feel like I have a cement block
on my heart and want to throw up."

Yup, well she just about got it right.

That's how I feel too.

Cement block.

Crushing my heart.

Cannot breath.

Anguish in my soul.

My husband, my husband, my husband.

My friend, my friend, my friend.

(please don't die)
(i'm not dead yet)

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

What is a tumor marker you ask?

(Good question, by the way!)

In this case it is called "CA 19-9" and what it does
(in simple terms) is measure the amount/activity/cancer
load in Kyle's body.

Tumor marker up?  That's bad.

Tumor marker down?  That's good.

(In every kind of cancer by the way)

In two months time Kyle's tumor marker (the measure of
the cancer in his body) has DOUBLED.  

This is just plain bad news.

No matter HOW you try and spin it...it's 
JUST.BAD.NEWS.

It means that this round of chemo has NOT worked,
at all on Kyles cancer.

(has not worked--> dagger in heart)

It hasn't stopped, halted, killed or annihilated 
any cancer cells this time.  

Not a bloody one.

They've gone to town inside of him.

Multiplying and replenishing.

(A term much better used for biblical
procreation than cancer cells)

The tumor marker is as high as it was when Kyle
was first diagnosed with cancer.

One year ago.

For a long time the marker stayed low, where it should be,
in the "good zone" but not anymore.

It also means that this kind of chemo is NOT
working on the cancer anymore.  It is not beating it
down, crushing the cells to smitherines, kicking
the crap out of it.

The cancer has become resistant to this kind
of chemo and the past 8 weeks, and all the hives,
and reactions, and what not, were in vain.

Literally.

Kyle called me at work with the news, and let me 
say for the record--THAT IS NOT WHERE I WANT TO HEAR
BAD NEWS!!!!!!!

I sat there shaking and trying not to cry for 
hours until it was time to go home and then fell
into my car and sobbed on the whole drive home.

This is real people.  This is real life.

Now this doesn't mean "We're done"
Nor does it mean "We give up"

It doesn't mean that at all.

But it does mean that things are getting dicey.

We're trying to figure out with doctors what's next.

Kyle technically has one more "dose" on this round
and then a scan--but at this point there is NO point
of the $8000 price tag that each round of chemo costs
or sitting for 6 hours with a drip in his port, or
not moving on to the next kind of chemo.  

There simply is no point because this number 
tells us all we need to know.  

The cancer is growing.

And this chemo no longer works.

What we do need is a new plan.

What we do need is a new scan.

We need to see how big it's grown or how
far it's spread.

We are shaken but still willing to fight.

We are down, but not out.

Remember what I've always said?

Our hope is in the FIGHT.

We're realistic enough to know that in the end
Stage 4 metastatic Cholangiocarcinoma will win.

This is a bitter pill to swallow.

And for all our honesty?
This one hurts deeply and profoundly.

This cancer takes no prisoners, sadly.

It is aggressive and unrelenting. 

It shows no mercy. 

It is every bad word I can think of and will not
type on my blog.  (And then some more bad words on top)

There's our update.

Not a good one at the moment.

We're pow wowing with two doctors and trying
to figure out the next best plan.

There are other chemos in the arsenal...but
they are basically a crap shoot and roll of the
dice.  No one really knows whats next (and by
"no one" I mean the doctors).

We both have our gloves on though and will
continue to fight the good fight while there is 
fight left inside our souls and hearts and 
bodies.

We're feeling a little battered and bruised 
by the news though...we would've like better.

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

The (Not So) Luck (y) of the Irish

Just a little update for Kyle's progress today.

Happy St Patricks Day for starters.  

We had the (not so) luck of the Irish with us today.

Kyle had chemo and half way through his Cisplatin bag 

he had the reaction we've been worried about. 

Long story short he is now officially DONE with 

that kind of chemo for good. 

It was pretty exciting for a minute in the 

old Infusion Room at Huntsman 

(depending on your definition of "excitement", right?)

So next week will be a new chemo and a new plan. 

We will keep people posted. 

We are officially headed into uncharted territory

and you would think after one year of "uncharted"

I would be good, right?

Not so much.

Kyle is all drunk on Benedryl now and will at

least hopefully sleep well tonight.

I may just get "all drunk..." 

(of course I'm kidding, seriously I AM KIDDING!)

Love,

Dor & Kyle

Team Kyle Fundraiser Event --Save the Date!

 Kyle's friends and family are throwing/having/doing
a big fundraiser event for him/us/our family next month.

We am not really in the loop, we have been told to just
"show up".  I DO know Sarah Sample is singing and that
ALONE is worth showing up for. (remember Sarah? From the
Christmas concert?  The voice of an angel Sarah?
Yes! Her!)  

Kyle and I?? Maybe, not so much--but Sarah?

Oh yes Sarah is worth it!

I DO know that hours and hours and hours of work have
gone into this and that all of those hours are greatly
appreciated by myself and Kyle.

Now we just need to get the word out and so I am
hoping that some people read my blog and that will help
with the "getting the word out" part of it.

Just to give you a taste of what cancer feels like 
financially for a "normal" family, I share the following.

Our "out of pocket" in payments to fight this cancer
this year will be close to $10,000.  

Yes, you read that right. 

$10,000.

That is a heckofalotofmoney.  
That's what it is.

Now I know that this is not a big deal to some families
and they could pay without blinking an eyelash, twice.

For us?  This is an amount that is overwhelming to 
say the least.

We hit our first deductible in January and a 2nd
one in February when my new insurance took over 
and started carrying Kyle.

Of all the "insults to injury" that one is perhaps
the hardest to swallow with cancer.

The financial one.

I honestly am not sure how people do it who have 
no insurance.  I honestly don't know how you choose
between money and helping buy time for someone you
love, but I guarantee that it is a choice that
people with this disease make Every.Single.Day.

(And by "disease" I mean cancer in general, not
just CC.)

Mostly, we want people to come and support the hard
work that so many others have put time and effort 
into...and if we help meet ANY of the "goal" our
Team Kyle fundraiser crew has set for this event?

That's just a bonus.

A shout out to all those who have helped organize
and work on all the "behind the scenes" of this
Fundraiser Event.

Honestly, when all is said and done?  We will 
NEVER EVER EVER have enough "Thank you's" to tell
everyone.

Ever.

But, in the event you're listening?

Thank you.

Again and again and again and again.

Love,

Kyle and Dorien and Family

Cancerversary: Part Two

I don't know folks.

I thought I would have a lot to say, as I usually do.

And I typed, and wrote, and typed some more.

But then I decided a picture truly IS worth

a thousand words.

And I have a thousand words worth of pictures.

(But will spare you the misery of looking at

ALL of them...maybe later.)

So, I thought I would share a FRACTION of the 

cancer journey pictures I've taken over the past

12 months.

(And someday you can ALL thank me for the thousands

of pictures I've taken by the way.)

There have been SO many 

treasured moments along our journey.

And heartache that I could have never imagined.

We can only thank those (with never enough words

or thank you's) who have stood by our sides 

and propped us up when we have felt like tipping

over.

Our hearts have grown and been filled.

And they have taken a beating as well.

All at the same time.

Our ups have been higher and our downs have been

lower than I could have ever humanly imagined possible

a year ago when we started down this road.

In the wise words of Kurt Vonnegut:

"Be soft.  Do not let the world make you hard.  

Do not let the pain make you hate.  Do not let the

bitterness steal your sweetness."

We hope to make it through whatever lies ahead

intact, and sweet and still full of love.

We hope to have the courage to keep 

stepping out into the darkness and unknown.  

We hope that you will keep holding our hands, buoying

us up, and giving us strength.

For truly, we cannot do this alone.

We thank you for standing with us as we walk 

down this path.

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

Onward.

We're SO glad Kyle is here 12 months later.

And in the words of Katniss Everdeen (from 

the Hunger Games series of course)...

"May the odds be ever in your favor, Kyle."

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

Cancerversary: Kyle weighs in.

A few words from Kyle

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

Tomorrow is the one year mark since my cancer diagnosis. 

What a year it has been!

26 chemo treatments. 

10 or so PET scans. 

Stomach scope, port placement surgery, 

radiated beads in my liver, and a liver biopsy. 

It has had some low moments, but many more sweet 

tender happy moments with my wife, my kids, 

family and friends. 

I've found in a year of terminal cancer that 

people either run to you or run away from you. 

There doesn't seem to be a middle ground here.

I have made a deliberate decision to never 

be angry at the people that run. And I am SO 

grateful for the people that have run to me. 

The sweetness of those relationships is indescribable. 

A year ago they said I had 6 to 18 months to live. 

I am realistic to know I will not beat this cancer. 

It just doesn't happen. 

At Stage 4.  

Maybe someday, but it is not yet that day.

But today I am pretty strong and I feel good 

most hours of the day. 

I don't look great but I look decent. 

It's not like I started out looking that good

in the first place. 

I intend to be around a little more than a 

year from now to watch Josh graduate from college, 

and see Grace graduate from high school, and Eliza

graduate from Jr High and Olivia sail out of

elementary school. 

I hope for more time beyond that. 

Who knows? I do know I will fight every day and 

I will do my best to stay positive and keep smiling.

My brother Bud asked me a few weeks back 

if I had a "bucket list". I told him about a few 

things and I have since worked on the list below. 

At one point I had to finish all my house 

projects as a bucket list, but lately I have 

realized I really don't want that list to end. 

As long as my wife needs me to finish a few 

jobs then I need to keep hanging around to finish

jobs for her.  She keeps making lists for me.

I don't throw this list out to the world so people can 

make this list their problem. I just figured if 

a few people knew and you're headed to one of these 

places or have a connection then maybe you can help me 

cross something off my list. 

Here is my bucket list:

Backpack to grand gulch

One more trip through The Subway in Zion 

Backpack to the Unitas 

A day on the lake in a boat

Early spring trip to Moab 

I love NYC. It's never old for me. 

I could go once a month. 

I hope I get to go there again. 

Many more annual beach trips

Glacier national park

Trip through paria canyon

Tag along on a good lake Powell trip. 

Sit on the river and watch a good fly fisherman catch fish. 

Get to The Grand Canyon. Crazy but I've never been there.

One Jazz game with really good tickets. 

See Antelope Canyon in Arizona 

A few more concerts....

Mumford and sons, Avett Brothers, U2, 

Willie Nelson, Prince, Rage Against the Machine, 

Vampire Weekend. 

(Just to name a few that would be cool to see.) 

A few more nights by a fire and sleeping in a tent. 

One NFL game. 

Is it still too late to learn to ski? (Yes-this is his wife)

Places I would still like to see- San Francisco, Portland, Seattle, Chicago, somewhere in the south. 

Sky dive

Eat a really good steak in good steak restaurant

Listen a terminal guy can always have goals right?

And dream.

And that's what Kyle has for today.

Tomorrow Dorien shares a few thoughts on the

past year.  We like to celebrate big around here.

And figure it's worthy of two blog posts anyway.  

Finishing the last bag.

March 3, 2014

Chemo Drip, Huntsman Cancer Institute.

(Where angels disguise themselves as nurses and humans)