mini updates...

Friday was chemo day up at the Huntsman we called it
"No Face Friday"--as usual, on Instagram (thebompie4)
if you want to ...check it out.

There were, well, no faces.  My sister messaged me and 
said it was actually GREAT, because you can't see the
greenish-grayish-beige color Kyle usually turns by the
end of the day.

Kyle said it was great, since he HATES to be in pictures,
well, no one had to see him.

Win-win for everyone.

Thanks to our niece Megan who brought lunch and to all our
visitors--we scheduled you all nicely and Mary* and Brandi*
didn't have to get mad at us this week for having too
many visitors.

Phew.

Mary says the "popular" guys get all the visitors.
I'm pretty sure "popular" is a code word for "terminal".

Either way, Kyle is very blessed to be so loved.

We even got to talk about placentas and make the staff
laugh in the Infusion room.  And EVERYONE needs a good
laugh with this disease once in a while.

Laughing is good.  Especially with this cancer.

Kyle's veins are just about shot/toast/ruined after 6 rounds of chemo (that Cisplatin is a mother &*$)@@ on them.) ...so we have decided that since there really is NO end to chemo (remember it's chemo til the end with this...) that he will have a port put in.

A port freaks me out just a little....the nurses swear it's awesome and easy and Kyle's life will get a whole lot better
for blood draws and labs and 9 hour chemo days up at the 
hospital.

It's LITERALLY placed under his skin, right next to his heart--
so the chemo drips in there.  Google it if you want to see 
what it looks like--or maybe I'll post a picture next week
after the procedure.

But I've heard scary stories of infection and blood clots--
and listen when your husband already has a huge battle, you
want as few obstacles in your way as possible.

Our next week looks like this:

This Friday PET scan--they will look inside Kyle and see how
the tumors are responding to the treatment (remember no matter
the news, it is NOT a cure....it is just TREATING the symptoms~)

We hope for shrinkage.  

Shrinkage is good.

For some things, shrinkage is not good--for cancer cells it is.

(name the Seinfeld Episode....sorry I digress)

It means the chemo is buying Kyle time.

(WE LOVE TIME! We love our Daddy and our Husband and 
want him here for as long as possible!!!)

On Monday May 13, we meet with Dr Sharma to go over the 
results and see where his tumor markers are at.

We're both pretty nervous.

Kyle FEELS better since starting chemo--we hope that's a 
good thing.

It's very stressful how cancer always keeps you living on the
edge.  

(This is (part of) the reason for that Texas sized cold sore on my lip...does anyone want a picture?  Ask my relatives, it's pretty bad).

Then Tues. Kyle will head back UP to the Huntsman center to 
have his port put in (surgery--but outpatient).  Not sure
on how long we will be up there that day.  

Then Thursday (assuming all is well and healed with the port)
we are right back into chemo.

Two weeks on, one off.

It's getting to be a pattern.

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

Mini updates.

*Mary and Brandy = nurses at Huntsman who put the poison in 
Kyle...it's pretty bad, or pretty good, that now we're starting
to know them by name and they're starting to know us by name.

A HUGE!!!! shout out to those nurses at the Huntsman Cancer
Institute...there are no better people on the face of this
earth.

In a bad situation, they make our lives a little bit better.

They are going straight to Heaven after this life.

Free passes, no holds barred.

Looking Beyond The (Dirty) Glass

This past week Kyle had a work conference in Park City.

He's on a committee and had worked on this weeks conference for

almost an entire year.

He spent Wednesday night alone and had me come up to 

the "big dinner and entertainment" on Thursday with him.

Who am I to complain about a night away with my husband?

There are, after all, a finite number of these nights left now.

And besides that, I love Park City in the warmer weather.

(Not being a skier and having an aversion to snow and cold 

weather, I love it when the temperatures warm up, up there.)

(And I know...what I am doing living in Utah, right? 

We have snow from October to May...I need a house in San Diego)

I wish I could say that I am always happy and cheerful

and enjoying each moment.

I WILL SAY that I am trying REALLY really really hard to do better.

In fact, sometimes, for a moment I forget.

(about the cancer).

I wish I had the capability, and capacity, to do it for

longer periods of time.

I wish I could explain how very heavy the word "terminal"

weighs on my heart.

My mind.

My soul.

Some days it STILL squeezes the very breath out of my whole body.

Some days I STILL erupt into uncontrollable tears, and sob.

Some days I am STILL so angry at this, this $#&*@&&# THING, for happening.

Some days I STILL want to curl up and quit.

I want to run away.  Make it stop.

Some days.

But that night, the dinner was good.  It was nice to be away

with him.

I got to meet some of my husbands colleagues and enjoy

real "grown up" time.  (It felt so weird to be among working

people after so many years as a stay at home mother)

They had a local music group (an a capella "boy band") for the

entertainment.  

They were cute and funny and could even sing!

And I did great until the band started singing.

Because music has ALWAYS had a way of going straight to my heart.

(argh!)

It made me a little teary.

I saw a few dads hold their kids tight.

And husbands reach for their wives hands.

It made my heart crunch a little.

(cancer)

(the future)

(*&#$^@*@)

ENJOY THE MOMENT, I screamed inside of my head, to myself.

And a tear slipped down my cheek.

I pinched my hands and bit my tongue to stop the tears from

continuing.

At a certain point, Kyle grabbed my hand and led me from the conference room back to our room.  

I could barely contain the sobs as we walked down the hotel

hallway to the elevator.  My shoulders heaved and I hiccuped 

as I stifled my tears.

(I'm trying)

(I'm trying)

(Oh, how I'm trying)

(But)

(It's so hard when someone you love has this, this thing)

As usual, Kyle held me and calmed my soul.

We lit a fire in the fireplace, and watched the sunset, and 

talked.

It was good to simply be.

Simply be in that moment.

The next day I woke up early (6 am) and looked out the window

at the sun peeking up over the mountains.

I climbed back in bed and then told Kyle I was sorry, but we

were waking up and watching the sunrise.

We grabbed the pillows and blanket and lay down on the huge

window seat with our faces peeking out over the window sill

and watched the sun make its journey slowly over the horizon.

As we were watching, I noticed how dirty the windows were.

They were filthy.  Good heavens, winter had been hard on them!

The sun shining on them only showcased the dirt.

The higher the sun rose, and the brighter the light became,

the less you noticed the dirt on the windows however.

In fact, by the time the sun had finished her journey up,

and over, the mountains...you could ONLY see the beams of

light and nothing else.

Even though the dirt was still there, on the window, the 

light was more powerful than the grime.

You couldn't see it anymore.

I told Kyle there was a lesson in that sunrise somewhere.

(cancer)

Sometimes the only thing we can see in front of our

eyes right now is ...the dirt, the cancer.  

Sometimes it obliterates and blocks even the most beautiful, and

joyful, things in our lives.

Our view is so focused on the daily fight, we sometimes forget

to enjoy the beauty of the journey.

That sun shining even in the darkest moments.

Sometimes that beauty, it takes our breath away.

And sometimes the dirty windows? 

They bring us down.

I told Kyle there HAD TO be a way to focus more on the rising

sun, than on the dirty windows.

Honestly?  The rising sun, in all her glory, took our breath

away.  There was no where else I wanted to be than right

there, in that moment, watching the sun rise before our eyes.

(baby steps to looking past the dirty windows)

There is still so much unknown in this journey.

So many time frames and tests and numbers and chemo days and scans and doctor visits and blood work and waiting and trying.

For today, this is what I've got...

A pledge to TRY... 

(always a little harder) 

...to be in the moment and see the beauty

in the sunrise of each new day.

...and to look past the dirty windows and bask in the glow

of the warming rays of light.

Our view from the windowseat at 6 am

I wasn't kidding about the dirty windows, was I?

...and we watched the sunrise and then put on our 

Superman shirts and went to Round Six of chemo.

PSA

Just in case anyone wants to know/visit/call/care--

Chemo was bumped to Friday this week.

So Tomorrow...Huntsman.

Please call or text if you want to come visit so we can
layer visitors and not get in trouble...not that we mind


...getting in trouble 

...OR visitors!

We love both!

Thanks,
Dor & Kyle

P.S.  Don't forget to call Voice Quilt!!!!!!!!!!


**Also this the the last chemo session in "this round"...
NEXT TUESDAY we go in for PET scans and a mtg w/Dr Sharma
to see what Kyle's tumors are doing***

Voice Quilt dialing info....

As promised.  Here is the information on leaving a Voice Message
on Voice Quilt.  It is very easy.

Dial, enter to 'code', and talk.  

Remember we have til the last day of May.

So chop chop!  We can't wait to hear your stories and 
memories and good times.

Thank you and we love you.

A HUGE "THANKS" to Michele for doing this!

Ready, Set, Go!

Share this.  Pass it along.  Get messaging.
Remember, this is NOT a "bad" thing...it's a GOOD thing.

A very good thing to be able have the time to do.
I will remind you all month.

I can be annoying.  Just sayin' ...

Thank you everyone.

*** I just want to add that this should NOT be looked at as 
a negative, but instead a beautiful gift.  How many times in our lives do we get to share with people that we love them BEFORE
they go.  How many times do we get to tell THEM a way they 
touched our lives, or remember a funny story WITH them?

This doesn't mean that we're "giving up" on Kyle (NOTHING
could be farther/further? from the truth!)  We hope he is around
for a good number of years with ALL of us...that's our goal!

But this is a wonderful thing to get to do...for you, for him,
and for us.   Just in case you needed a reason to see it in 
a "good light". :)  For us, this is nothing but good.

Leaving a message on a VoiceQuilt is easy – just follow these steps:

1.		Call 1-877-OurQuilt (1-877-687-7845) (see http://voicequilt.com/overseas if calling from outside the US)
2.		When asked for your invitation number, enter 199413
3.		Record your message, just as if you were leaving a voicemail Press # to review your message – or just hang up to save it

VoiceQuilt

I am posting a heads up (which I will update later today)...

A sweet friend from our ward has organized and done a
"Voicequilt" page for Kyle.

One of HER dearest friends died after a 9 (or 12?) year battle
with brain cancer and this was something she did for her
friends journey.  She wanted to do it for ours.

We are grateful she took the time out of her life to
organize this for us.  It means a lot to us.

It is a phone number (which I will link later) so that
people can call and leave stories, memories, messages, ANYTHING for Kyle (and his family...later).

This ONLY lasts (and is paid for) for ONE MONTH.

That is all the time you get to do it.

We are begging, in our "beggiest" voices to PLEASE, PLEASE,
PRETTY PRETTY PLEASE call and leave a message/memory/story.

We know Kyle is not 'dead yet'... (thank goodness!)

And people have told me they feel uncomfortable doing this
because to tell a story or record a memory "makes it seem
so real"....

Well, let me tell you something people...

THIS IS REAL!  Whether you do it or not, it's real.

He has cancer.  He is terminal.

So why not make HIM happy, and his family happy, and YOURSELF
happy by sharing a great memory with him that he can listen
to while he is still able to listen.

Isn't that great?  Won't that make you feel good?
Come on...you know it will.

This is something a sweet friend is doing so when he
IS gone, his family (us) will have memories from all of you.

It is also something KYLE can listen to NOW, before the time
comes when he won't be around to hear these things.  Or the
time comes when he won't be able to listen, even when he's
still here.  There will come a time....

If there is ANYTHING good and beautiful about terminal cancer...

in all the ugly hideousness of it...it is THIS fact.

We have TIME.

We don't know how much.

BUT WE HAVE TIME!!!

Time to say things that a lot of people don't get to say.

Time to tell stories and remember.

Time to spend it together, and love, and laugh, and be.

We are pleading to USE THIS TIME and record a memory for him.

It will mean so very very very much.

It is something that Michele (our friend) will then take
and make a CD of, for us to have forever.

It will be something that 10 year old Olivia can listen to
at some point in the future and use it to REMEMBER her dad,
when the memories fade of him.

Links will be posted later.

Again...with the pretty pretty pleases!

Pass it on to WHOEVER you think would love to call in too!

High school, family, friends, mission folks, co-workers,
enemies, well--not enemies--we would love to hear from ALL
of you!!

Thanks ....voicequilt>>>> that's what I've got for today.

Call...JUST DO IT!

Radio Silence

Sometimes I feel like I've really laid it all on the line
with my voice, and feelings, and emotions...so far.

Sometimes I want to take a step away from "laying it all
on the line" and run away and hide.

Under my bed and never face anyone again.

Ever.

Radio Silence.

I feel a (huge) burden in my release.

I worry about what people may think.

I worry that I have been TOO honest.

I worry that I am not honest enough.

I worry that I offend, or make sad, or depress.

I worry that I have a cold sore the size of Texas 
now growing on my bottom lip.  

(anxiety, worry...manifesting).

Sigh.  I am a mess.

I worry that I can't do this.

This, this very big thing.

I worry that I'll say the wrong words.

(It is "our journey" anyway, so I'm not sure how anything I say  can be wrong.  But I'm sure it is.  Sometimes.

But someday, if you ever have your heart, still beating,
ripped from your chest...it may quite literally change
how YOU view your paradigm of all the things you "knew" were
good, and right, and true.

All is always good and right and true in the world,
your world...until, well, it's not!)

I had an epiphany this week while talking "religion" 
with someone...We keep trying to explain how WE feel. 
What feels good, and right, and rings true. 

To us.

Other people keep trying to explain how THEY feel
about this experience.  What feels good, and right, and true.

To them.

I realized this weekend that ALL of our experiences, individually, shape how we think and feel and what we 
believe and what gives us strength to carry on.

Each of us brings something different to the table. 

All of our experiences are good, and right, and well, true.

To each of us.

We all need to respect that of one another.

We will NEVER convince anyone else that "our way" is the
right to view this, or experience this, or handle this.

No one else will ever convince us that "their way" is the
right way to view this, or experience this, or handle this.

And ...THAT'S OK.

Did you hear me?

I said that's OKAY!

Here's the thing...

We're not wrong.

And neither are you.

Neither are you.

Our life experiences have shaped us all to see and view
and believe differently.

Even in the confines of the same religion.

We all have moved forward with our own set of experiences
that form how we face, and view, what is going on.

So instead of Radio Silence I will say what I have just said.

See above.

I will embrace that we all will see and view and experience
this journey differently.

It will touch us, and move us, and change us, all in unique ways.

We will come away broken and saddened by it, and also stronger and changed.

In some ways better.

In some ways worse for the wear.

But none the less, changed.

Instead of Radio Silence, I will post a few pictures of Kyle 
and the girls I took this weekend.

Because one can never have too many photos.

OR too many Superman shirts!

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

Friday Update

Yesterday was Round Five....Up at the Huntsman.

Per usual...it's on INSTAGRAM (thebompie4) 
if you want to take a peek at a few pictures of the day.

Kyle gained (GAINED!) a few more pounds.

Listen, at some point it will start to go down again so we
will take "gain" as long as we can.

Way to bulk up Kyle.  We're proud of you for gaining!
(Listen how often does one get to hear THAT in their life?
Enjoy it while you can!)

(It could have something to do with all the treats
people kept bringing him.)

We had a constant flow of visitors and got in trouble from our
nurse. 

We are only allowed two at a time and we bordered on 4
for most of the day.

They pulled me aside to gently remind me that 2 was the limit.

(The silly thing is that *I* count as a visitor--I mean,
really? come on?  I am his wife.  I am hardly a "visitor".
I am an attachment.  An appendage.  A permanent fixture.
In my opinion, which does not count I SHOULD NOT count!)

Anyway, we cannot tell you how much we TRULY love your support
and visits...it makes the day, literally, FLY by for Kyle.

We love that you sit and make us smile and laugh. That you
bring a treat, a lunch and a hug.  We love all of you that 
take the time out of YOUR days to make OUR day!  We love sharing
stories and time and memories.  It is the brightest part of
a long, hard day.

Nothing makes us happier!

From here on out, we will have to schedule "time slots" so
everyone that wants a visit can have one and no one will have
to be turned away.

For those of you that have our cells, please text or call
and we will let you know a good "visit time" that is not
overcrowded, or filled up.

PLEASE don't stop coming...it SERIOUSLY makes us SO HAPPY
to have a visit and see you.

NEXT CHEMO SESSION:  Friday May 3 (We have a FRIDAY visit
next week).

That is the last day in this 9 week "round". 

The following week we will do blood work for tumor makers,
PET Scans and Dr Sharma visits.

We will find out what this chemo is doing for Kyle's tumors.

I told Kyle yesterday I'm really nervous to get to that week.

It will tell us how he's responding to the chemo, for now.

We had a long talk with the Huntsman Social Worker yesterday 
about terminal cancer and our feelings and dealing with
"the reality" vs "living in the moment and finding joy."

That one is a tough challenge for me folks!

I am a woman, and a worrier (possibly the two go hand in hand).

It's hard to know all the answers about the future, and there are a LOT of things to worry about when things go south, and then when things go more south.

We asked for advice on how to enjoy each day and try not to worry about the very real, very hard stuff, that will come into our 
lives.

She said she sees this a lot and it's all still very new to us.

What she usually witnesses is a "shift" in people with terminal illness, almost a  release, where they realize they no longer have control of what will happen, or when it will happen and so something in their brain "shifts" and they learn to JUST LIVE
each day.

I'm trying to get there.  I'm trying to compartmentalize more.
I'm not very good at it.  I don't want to look back and regret not being HERE and NOW and always worrying about WHAT and WHEN.

If any of you readers have any advice, I would LOVE to hear it.

How do we as people learn to "let go" of the future, and worry,
and needing all the answers NOW and just live FOR TODAY?

(It seems to against everything our Western culture teaches us!)

I would LOVE any suggestions ....I'm sure you're all brilliant!

HELP!  That's what I've got for today!