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 
exhausted.

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.

Kyle was awakened DURING THE PROCEDURE, WHILE HE
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 pain...so 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, worried...you name
it, I felt it.

At 11:30 PM (THREE AND A HALF HOURS AFTER WE GOT TO THE
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
area.

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 radioactive...so 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
glow".

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.

Why?

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 concretefaith.org 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

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.








Thursday, June 19, 2014

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.



Friday, June 13, 2014

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.