Settebello Pizzaria

260 South 200 West

Salt Lake City, UTAH

This upcoming Monday.  All are welcome!

We are so grateful to Jennifer Townsend and
Settebello owners for doing this for our
family.

We are humbled and blessed to have people in our lives that love us.

Thank you!

Kyle had his PET scan yesterday--that part 
was easy.

It's the waiting that's hard--no results til
Monday.

Now THAT?, that's torture!

2:30 with Dr Sharma.

Hopefully we're in a good mood on Monday 
night at Settebello.

Either way--we will be, because we'll
be surrounded by people that love us!

Have a great weekend everyone!

Have a Happy Mothers Day!

Here's to all the great mothers out there!
----------------------------------------------

ETA:  Kyle and his office (he works in a family practice clinic) couldn't wait for results of PET scan--so they went online (in this electronic world of medical records)
and found his test results!

The two tumors in his liver have both gotten smaller.  His lung tumors have ALSO all gotten smaller.  His "SUV" value on liver tumors
has gone from something like 12.1 to 4.6--
that's a lot of shrinkage.

They are both also LESS active--also good news.  We like less active cancer cells.

Something-something-volume (or value...)
still learning all the medical words.

We are so happy to have shrinking tumors,
for now.

We are happy that his cancer is responding to
the chemo, for now.

We are happy and thankful and grateful for 9 good weeks and are ready to start 9 more good weeks next Thursday.  We will add whatever Dr Sharma tells us Monday
at the app't.

For now?  YAY!! for shrinkage!!!!!!!!!

The post in which I almost say the "F" word....

Or post sub title:

In Which Dorien Shares the Most Awful Experience She's 
Had So Far...related to Terminal Cancer.
(other than the diagnosis).

That's saying a lot.

You're intrigued now, aren't you?

Or you're horrified, right?

Some of you will turn away.

You will think, what has become of Dorien?  

What has she lowered her standards to?  
Gasp! Shock! Horror! Shame!

I know.  I know.

(And anyway, if you already REALLY knew me--you would be
MUCH LESS shocked and horrified....or maybe you would be MORE
of BOTH!)

Some of you will quickly keep reading to see WHAT
it is that makes me ALMOST say the "F" word.

Because you're curious, or because you like scandal.

Scandal is delicious, isn't it?

Savory and tasty and wonderful.  
It rolls around the inside of your mouth slowly.  
It's delightful!

And yes! I am talking about THAT word.

It is THE "F" word.

Not funny, or frugal, or fantastic, or fugly.
Or freezing, or friend, or flaming, or forever.
Not Facebook, or funyuns, or flamboyant. 

But the "Mother of All Bad Words", F word.

That one.

Well, if you've made it this far, lets go even farther.

Have I mentioned before that Kyle and I are 
EXTREMELY private people?

If I haven't (which I think I have) I am mentioning it again.

PRI-VATE!  Capital "P".

The fact that everyone knows our business with this cancer is, how shall i say it?

EXCRUCIATINGLY painful for BOTH of us.

That's how I'll say it.

Phew, that was easy.

We've done this blog and Facebook pages so that the bazillion
people who love Kyle and want to know what's going on can
be updated.  And help, and send love, and be a part of our 
lives and this journey.

It is SO MUCH easier for us to get information out.

Easier than calling or texting 100 people every time we get
an update.

There are lots of updates.

And lots of people to tell.

People care and want to know, so we have sacrificed something
that we used to treasure (privacy) in order to share this
journey with people quickly and efficiently. 

And we're okay with that.

Because we know you care!

And that matters to us, it gives us strength.

So that's the trade off for us.

We consider it a pretty good trade off.

So far.

Sharing, however, is sort of like having all the doors and windows open in our house on a summer day and having a huge fight that we don't want anyone to hear.

Except this fight?

(cancer)

EVERYBODY'S hearing it.

sigh.

(Not that we ever have any fights.  ahem.)

We've become accustomed to it, this lack of privacy.

That doesn't make it any easier some days.

Now here's the kicker.

Here's the part that led me to "F" words rumbling around
in my head and throat and almost leaping from my mouth.

Those guys are sneaky, slippery and fast--you have to 
watch out for "F" words.

They find a way out before you know it sometimes.

Because of Facebook, people who neither Kyle nor I exactly
"know" have wiggled their way inside of our "circle".

Maybe a friend of a friend.

See?

And that's okay.

If people want to read our story, or cry, or draw courage from it, or make fun of us, or WHATEVER...that's OKAY.

It's okay, until it isn't.

Yesterday someone crossed the proverbial line on Facebook.

Someone I really don't even know.

That friend of a friend thing.

They messaged me, after they had seen a post and said something
like this....

"You know all these people contributing and donating to your
family are only going to be burned in the end."

"This will end badly for those people."

"This is the internet and you never know when people are making
up cancer stories just for sympathy and money."

"Or both sympathy AND money."

The implication was that I was lying...

Can you see where I'm going with this?

I can already feel my blood BOILING again, just typing it.

Lying...

...About my 44 year old husband having terminal cancer.

...About my family and our story.

I read this message, the ONLY cruel and awful message I have
had thus far related to Kyle and cancer.

Sobs caught in my throat.  I wept.  Literally wept.

My tears, however, weren't tears of sadness.
They were tears of anger and fury and hurt and pain.

Why would someone choose be so mean?  and awful?  and make such 
a HORRIBLE accusation?  I was devastated.

Here's "The THING" lady...

My husband?  He DOES have terminal cancer?

Nope, not making it up.

Wish I were.

Here's the OTHER thing.

Perhaps this is even MORE important for me to say.

If I could take EVERY PENNY that has been raised for my
family, every act of service, every kind deed, every dinner,
meal, treat, bit of yard work and house cleaning and roofing,
every text and phone call and card and visit and every
single freaking bit of love and goodness that has been shown
to us for the past two months since we got this news...

I would trade ALL OF IT, and more....

Do you hear me???

ALL OF IT AND MORE!!!!!!!!

Just to know that my husband wasn't sick, and going to die.

Just to know that he would watch my kids grow up, and get married.

Just to know that he would be around to play with grandchildren.

Just to know he would be here to change MY diapers when I
was 82 years old.  

I would trade ALL of it, all of it, all of it, to NOT have this cancer and have a husband.

Here, with me and the kids.

On earth.  In this life.

I WOULD TRADE ALL OF IT!!!

Because even though it IS ALL nice and wonderful and helpful
and kind...it doesn't change the ONE THING I would give
a million dollars to change.  

The one thing I cannot change, even IF I had ALL
the money, and ALL the kindness in this entire world.

SO .....here's what I didn't say to you.

The thing that I really wanted to say to you yesterday...
...and didn't.

Because (shockingly) sometimes I actually do practice restraint.

(Not much, and not very often if it makes anyone feel any better)

DUCK SOUP!!

(If you take off the "D" and trade it for an "F", and drop
the "S" and "P" off of "Soup" and change it to something that sounds like "Soup" that starts with a "Y"....)

Well, you get this picture!

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

DUCK SOUP!!!

If you want to judge me?

Judge me!  Fine.  I'm okay with that!

But don't you DARE call me a liar!
Especially about something like this.

And just for entertainment I will let Kyle "say" it for me.

 

I'm so sorry to offend, those who I am SURE
I will offend.  Photo taken by yours truly-

one day after cancer diagnosis, waiting in the

hospital for an endoscopy to see if cancer was

in stomach as well.  Some days? This is just

how cancer makes you feel.  Love it or hate

it--?? That's the truth!  That's our truth!

The "F" word?  It's NOT the "bad word" here.

The "C" word? (cancer)

That's the one that's the bad word here.

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!