Exhaling

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

breath.

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...

Here.

Now.

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

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...

Here.

Now.

But instead included...

There.

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 

thought.

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.

Seattle Trip Video....

Thanks Dave for taking Kyle on the trip.

Thanks for making the video.

And thanks for wearing your coral shorts so well.

The Friday the 13th Edition....

Well, after all the hustle and bustle of the past
week including crazy flights to Georgia and back for Kyle, funerals, meeting new and WONDERFUL people --

(What's up Georgia? you guys make some mighty nice folks!)--

and then a 5K fun run last night for a fellow Huntsman 
cancer inmate, er patient....the world has settled to still
for us.

Today (thanks to an amazing and wonderful boss)
I got to accompany Kyle to the Huntsman for
meetings with both an interventional radiologist (Yay
for Dr. O again, our farm bred Montana Y 90 kick-A
doctor) and our NEW friend Dr. T, a radiologist oncologist.

Yes two different things apparently.

I cannot GUSH enough about HOW FABULOUS these two 
doctors were.  The first Dr. (Dr. T) spent a fair amount
of time with us, reviewing scans, and blood and Kyle's
charts.  He told us that in his expert opinion he was
NOT the guy for us, but he still sat with us and talked
and talked until we had nothing left to say.

He said "Honestly Kyle, somethings working right, I've
seen enough cholangio patients and 9 months in a lot
of them are sadly are dead...and here you are 15 months in
still looking pretty darn good."

He then went on to say this, "If you're a 40 year old 
with terminal cancer?  Huntsman is going to thrown 
everything good they can at you to buy you time 
and keep you here with your family."

We like that kind of talk.

We LOVED Dr. T...a lot!

Then our next appointment was with Dr. O, the
farmboy who did Kyle's Y90 last November.  He finally
explained to us in CLEAR DETAIL that WITHOUT the Y90
Kyle's HUGE liver tumor would have grown out of 
control and most likely killed him off by now.

So now we finally get the good that came from Y90.

Kyle is still here.  That's the good--we bought time.

That tumor?  Still dead as a doornail.  It is a goner.

There is plenty of new stuff growing in Kyle's liver--
but that one is blasted to eternity and beyond.

We love blasted tumors.

Dr. O likes Kyle's liver function numbers (all in 
the normal range, shocking right?)  He's a little
worried about platelets and white blood counts (which
we knew the 5FU would knock way down) but says we
can bring those numbers up (even with a shot if we
have to).

Dr. O is going to meet with the tumor/liver board
on Tuesday to present Kyle's case to a bunch of OTHER
doctors to see if THEY have any thing else to throw
on the cancer, or any other ideas to help.

In the meantime, Dr. O wants to go back to Y90 again
to blast some of the big stuff on the other side of
Kyle's liver.  He feels it is still a GREAT option
to buy Kyle time....

...and not JUST time, but good time.

There are always risks, of course we know that.

There is the problem of insurance approving this again.

We know that. 

But we left the Huntsman Cancer Institute today feeling
HOPEFUL and not down hearted.  

We felt happy.  We feel like we have a team of people
REALLY REALLY REALLY fighting for us.

And not just for "quantity" of life, but "quality"
of life.

Kyle and I talked long and hard last night about
quantity vs. quality and we want to err on the side
of quality.

Kyle FEELS good.  We want as much of THAT kind of time
as possible.

So Friday the 13th didn't turn out nearly as bad 
as it could have.  

We have a new plan.  We love our new doctors.

We will move forward a day at a time and see
where it takes us and to what end.

In the meantime, I will finish all my homework 
that got mixed up in a very crazy week and hope
and beg for my teachers forgiveness.

Moving Forward, with a smile.

That's what we've got for today.

The Still In the Spinning

I think of a top going round and round faster and faster,
then more slowly, then slower still, until it teeters on 
its edges and tips to one side and falls down.

Still.

After so much spinning.

This past week has been a doozy.

So much motion, free falling sadness.

Our cholangio friend Travis Lee Roberts passed away
on Saturday morning.

It broke our hearts into a million tiny pieces.

You can read his obituary here:

http://www.legacy.com/obituaries/atlanta/obituary.aspx?n=travis-lee-roberts&pid=171274313&fhid=4911

(for some reason my link is not working. Copy and paste
it in your browser to read Trav's obituary.)

Kyle got some pretty grim news on Monday and then
hopped on a plane Monday night to Atlanta to hug Carrie 
and honor her husband Travis by being there for his funeral.

He had a deep need and a pull to go and give of his
heart and love.  It was an overwhelming feeling he
could not put aside and so he threw caution to the 
wind and set off on another adventure.

Life is moving at a fast clip, a rapid pace, right
now and sometimes I fear it needs to slow down.

Time is both a blessing and an enemy.

Especially when the clock is ticking.

Kyle spent the day at the funeral today and said his "mascara
was a mess from so many tears."  (Not literal mascara
of course, just the figurative kind.)  He felt so
much anguish and sadness in his heart and kept texting
things like "their babies are so small"  "I see Carrie"
"This family is so kind to me"  "They are so full of love".

He was invited back to Carries house where he sat with
family and friends who knew Travis best and heard stories
about "his brother" in battle.  

The battle of a lifetime.

The fight with the beast called cancer.

He was OVERWHELMED with kindness by a family loving HIM,
on a day they were mourning the man THEY loved.

He said over and over how kind and loving this family
was to HIM in their darkest hour.  

This overwhelmed him.

They gave him hugs, for BOTH he and I, and begged
him to keep fighting.

Please keep fighting.  Don't give up.

And then he boarded a flight to come home and told
me "the tears won't stop falling."

"I don't want to die" he said simply.

And I told him to let it out.

Just let it out.

Be still.

After so much spinning.

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

Kyle and Carrie

Dr Update

Well after an almost 2 hour wait for the Doctor,
we got our update.

It wasn't good news.

The cancer is not responding to THIS chemo either.

It has grown in his liver and become more metabolically
active.  And there are some new lesions.

Lungs and lymph nodes are stable, but in the
end that won't really matter.

It's the liver that matters.

The Doctor said he "was worried" but wants to try a
few more things before we throw in the towel.

We need to wait and see if our insurance will
approve one of the new things or not (50% of the time
they do/don't).

Needless to say our hearts our heavy.

This is, of course, the news we did not want to hear.

So we are waiting to hear what happens and Kyle
will meet with everyone again Monday to go from there.

In the meantime?

I may cry a little.

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

Damn it.

Sweet And Salty

Life has been blessedly sweet for the past little while.

No, it has not been perfect. 

It has had its ups and downs, yet it has had a golden
hue of light and happiness cast over it.

We had a 20 year kid old total his car.  
(He is fine, the car is not.)

We have had short weekend trips to Arches National Park
and hiked Delicate Arch to check it off of Kyle's bucket
list.  (Spring in Moab and Delicate Arch both)

Kyle's friend of 30 years "Uncle Dave" took Kyle on
a #guytrip to Seattle, Portland and Cannon Beach.
Another #bucketlist item checked off.  They had 
a blast and made wonderful memories.

Kyle and the family got to attend a super Jazz game
or two with fabulous seats and the VIP treatment.

Even I, who am not a super big fan of Jazz games,
had the night of my life.  So much fun!

I passed Math with an "A".

The kids finished another year of school, and 
despite everything and in spite of everything,
they made close to straight "A's".

We couldn't be more proud of them.

We have had nights laying on the back lawn with cool
summer Utah breezes blowing over our faces and the
light of the setting sun casting its last golden
shadows over Mount Olympus and the valley below.

We have had long, good conversations with our children.

We have laughed and hugged and held on to one another.

We have made the endless bad cancer jokes and
added some new ones to the mix.

Kyle and I have talked late into the nights,
when we should be sleeping.

We have taught Ruby the doodle a new trick or two.

We have had dinners and movies out with family
and friends and good conversations and sweet 
tender moments that we will always treasure.

Tomorrow Kyle gets his scan.

The results will only be one of two things:

1. Good news (shrinking or stable cancer)

OR

2. Bad news  (spreading growing cancer)

Sadly, it's an "either/or" kinda deal with this gig.

Obviously, as always, we hope for good news.

Who wouldn't when your life is on the line?

I cannot bear the thought of my life without my
best friend of 25 years in it.

Or the thought that my kids daddy will someday not
be here for them.  He is the love of their lives.

The sweet has also been salted with hard, sad 
news of two friends who have gotten the ...

2. Bad News 

Last night I wept like a baby, until my eyes were
so swollen I couldn't keep them open anymore and
I had a pounding headache.

I cried for their pain and heartache and sadness.

I cried for the knowledge that this would someday
be us.

I cried because I wished and hoped against all
wishes and hopes that somehow I could change 
something for them.

I cried because both of their lives have touched
mine and changed me for the better.

I cried because they are beautiful, wonderful
human beings and the world needs more people like
them.  Not less.

I cried because life Just Isn't Fair.

And tonight I sat once again on my back lawn,
with my doodle and my husband and tears filled my 
eyes.

And I breathed a "Thank You' on the breeze,
that my husband was still here and happy
and making sweet memories with us.

And I was thankful that we were enjoying this time
and making the best of it and living in each moment
the best way that we could.

And I was thankful for sweetness....

and my heart broke with sadness.

Both, at the very same time.

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