VOICE QUILT! ONE WEEK LEFT!!! CALL IN NOW!!!!

Family! Friends! Please call and leave your story!

Only one week left!

Participation has been POOR at best--- :(

It's almost over and there are not very many messages for Kyle and the

kids--Come on now!  It's not that hard folks!

Pass this one to anyone who may want to call!

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

Short Chemo Day Update

Per usual chemo day is....

...on Instagram, Round 8. (thebompie4)

I choose abstract pictures today with no people or faces.

Sorry if people are getting tired of them...I like
documenting our journey.


All Kyle's blood work is STILL great!

So chemo continues.

His weight is holding steady.

(Thanks to everyone and all the treats they bring him).

He feels pretty darn good.

And that makes us happy!

"We can choose to give up.  give in.  or give it our
all."

We are choosing "our all!"

and...

...That's what I've got for today.

I have something to tell you...

Before Kyle was diagnosed with cancer,

I felt the need to "warn" Josh (our oldest) of what was coming.

(lucky him)

I pulled Josh into my bedroom one day and sat him
down on my bed.

I am pretty sure I had tears in my eyes and I know for
a fact I had a heavy, heavy heart.

Something in the universe was swirling around my soul,
whispering loudly to me, that bad news was coming.

Other people tried to make light of my feelings.

They told me to stay off the internet.

But something louder than their voices was telling me...

...telling me of the impending blow.

The fracture, this fissure, to life as we knew it.

Something was blowing in on the wind, and it wasn't good.

I knew in my heart of hearts WHAT was coming.

I knew I had something to tell Josh.

Something important.

That day, as I took Josh into my room and sat him on my bed,
I looked at him and said, "Joshua, somehow, someway I have
a feeling that whatever we find out is going to be serious.
I just want to prepare you for what I think is coming."

I needed Josh to know what was coming.  I felt very strongly
that he needed to be prepared.  To know.

Then when we found out Kyle had terminal cancer, there were people who wanted us to hide the truth.

From family, from our children, from everyone.

To us, that wasn't fair.  It didn't make sense.

People needed to know.

To grieve.  To love.  To share.  To be.  To process. 
To come to terms.  To surround us.  To help us.  To lift us.

As you can see (if you've been reading my blog), I am honest,
quite possibly to a fault.

But none the less, honest. 

Now here's where YOU come in.

Whether "YOU" are family, or friends, or basically ANYONE
who loves Kyle...

I have something to tell YOU.

I feel very strongly that YOU need to hear this.

Right now Kyle is doing good, very very good in fact.

We are SOOOOOO thrilled with this fact.

(So thrilled.  So thrilled.  So thrilled.)

Jumping up and down--giddy kinda thrilled.

We love it and embrace it and rejoice in it.

This, however, will NOT always be the case.

So this is what I feel I must say to YOU.

Take the time NOW to be with him, and make memories.

Do NOT make excuses, or wait for another day.

Time will keep passing.  

And if you're not careful...
Well, YOU know the answer to that.

So here's what I want to say to YOU...

Seize the moment.  Make hay while the sun shines.  Carpe diem.
Grab the chance.  Smell the roses.  Take the opportunity.
Life is short.  Don't be fooled by the calendar.  
Enjoy yourself, it's later than you think.  Go for it.
Spend the afternoon with someone you love. Start immediately.
Make no exceptions.  Make a memory.  Don't waste time.
Make the most of it.  Don't put off tomorrow what you can do today.  There's no time like the present.   Don't be an idiot. 

and lastly...

Whether it's the best of times or the worst of times, it's the only time we've got.

Here's the thing...

everyone thinks they have time.

And so YOU keep pushing things YOU need to do to a later date.

With cancer, you just don't know how much...time you have.

I don't want anyone, who WANTS to make memories with Kyle,
to regret it as they look backwards and find they didn't make
the time.

Just make the time.

Because before you know it, time will be gone.

I'm not trying to be fatalistic.  I'm just being factual.

He only has so much of that time stuff left.

Why not hang out with him, or call him, or take him to lunch,
or visit or spend what he has, while he's GOOD, making that
memory with YOU? 

Whether its many many month or several years, 
there is a limited amount now.

DO NOT regret that you didn't make time.

I know that life is busy, and time often gets away from us--
but this is a case when you can't let it.

Get away.

Or YOU will have regrets.  

When you look back, and realize you didn't make the time
for your brother, or friend, or dad, or cousin, or boss, or husband, or WHATEVER he is to YOU.

I am trying to seize EVERY possible moment of time I can.

This weekend it meant taking him with me on a photo shoot.
(That sounds so professional--I am anything but!)

It meant delaying cleaning the house and catching a movie
we would normally wait to see in Redbox.

It meant just saying "Let's go!"  and grabbing dinner with
friends.

It means going up to chemo and every.single.doctor.appointment
with him.

I will never get this time back and I will NOT look back
with regret and say I didn't make all the time I could for
this man that I have called my best friend for 24 years.

In case YOU'RE worried about who YOU are....???

I'm not talking to anyone in particular.  

There is no one on my mind as I type this.

Just YOU, whoever YOU are...as YOU read this...

...Maybe YOU needed to hear it.

Make time.  Make memories.  

Don't look back with regret YOU didn't make either
with someone you love.

The dishes can wait.  The laundry piles can wait.
Homework can wait.  Pretty much anything can wait.

The thing that will NOT wait for YOU?

Time.

Don't let it get away.

That's what I've got for today.

You've got to love a man that can wear an apron AND make crepes!

And watch out--he KNOWS how to wield a spatula! 

Settebello

PHEW!

What a week last week was.

My blogging has suffered.

I know you've ALL been holding your breath!

(ha ha)

Monday was Lab Tests and Dr Visits and Settebello Fundraiser
night.

Tuesday was Kyle's port surgery (which total time up
at Huntsman was 4 1/2 hours start to finish....it was a long
day).

Wednesday, we took a deep breath and Thursday we jumped
right back into chemo.

Friday was Kyle's half work day and half exhausted day.

I took a nap from sheer exhaustion and ...

Saturday was the day we got to take Sr. Pictures for a family
friend, clean the house day, go a movie with your husband
who can sit still for two hours on his chemo weekend and
out to dinner night with friends.

We had a full schedule, but it was a good week.

The fundraiser, at Settebello, put together by owner
Michael Brooks and old pal Jennifer Townsend was a smashing
success.

The thing about cancer is the constant roller coaster ride
you seem to find yourself on.

Emotional roller coaster that is.

Kyle and I said it seems to either be the "highest high"
or the "lowest low" with not a bunch of "level in the 
middle stuff."

It gets exhausting just riding the emotional highs and lows
of this disease.

Sometimes swinging from high to low and back again all in the
same day.

Settebello night was the highest of highs.

Literally.

You always go into these things a little nervous and think
"Geez, what if no one shows up?"

Kyle went down to Settebello for lunch with the ladies from
work and got to see some ward friends, work friends and old
friends who were there to support him.

We headed down as a family at about 5 pm and spent the night
there until closing time at 10.

We were met by family, friends, co-workers, old mission companions, old high school friends and a slew of people from
both the past and present.

It was TRULY WONDERFUL to see so many people who made time
in their day to come out and support our family. 

It was humbling.  It was joyful.  It filled our buckets with
enough good energy to start another 9 week journey through
chemo.

We hugged and laughed and shared stories and caught up.

We ate and laughed some more and took pictures and felt loved.

We basked in the glory of simply being surrounded by love
and people who care.  

We said over and over, more than ANY monetary donation (which was GREAT!! Don't get me wrong!), but the BIGGEST "donation" to 
us was the love and friendship that QUITE LITERALLY filled
our souls with goodness and hope and courage and joy and 
happiness and peace and all things GOOD.

Good, from the top of our heads to the tips of our toes.

We tingled with the good energy that was buzzing around us.

It was a pleasure to meet Michael Brooks, the owner of 
Settebello and thank him for the goodness and kindness of 
this act.

(How in the world do you EVER thank someone for doing this for
your family anyway?)

But Thank You Michael and Thank You Settebello and Thank
You Jennifer Townsend for giving Kyle and I and the kids a night
that will remain in our hearts FOREVER as a night filled
with goodness and joy and happiness in a journey that often
feels heavy and tiresome and sad.

I've looked at these pictures dozens of times and just smiled.

From ear to ear.

Kyle has too.

Thank you for this night!

Thank you oh thank you oh thank you!

We will always treasure it, in our hearts and memories as
a good good good good night.

I won't take the time to tag who everyone is in all these
pictures...except for Michael and Jennifer who are in a few
half way down this huge pile 'o pictures.

Just FYI Settebello (and Michael)--all of our friends who had
never ventured downtown to eat here ALL said it was seriously
the BEST pizza they have ever had.  We hope for YOUR sake,
and for your goodness and kindness to US, that they will all
venture back ...over and over and over!)

We know WE will be back.

Thank you again to ALL of you who took a minute of two
out of your VERY busy lives to bless our lives that night.

You will never know how much it meant to our family.

Thank you!

 Michael Brooks and Jennifer Townsend

VOICE QUILT REMINDER

From Michele Chisholm (who is doing this for our family):


Hello everyone, I am going to put a plug in for the voice quilt.  I did a voice quilt for a dear friend who passed away from brain cancer.  I started my quilt too late and I'm not sure that she was even able to understand the amazing, beautiful words that had been spoken to her.  We decided to start Kyle's voice quilt while he is still doing so "well".  We want him to hear how loved he is.  We want him to KNOW the difference he has made in people's lives.  This doesn't have to be a farewell...it's a "we love you so much and NOW we are going to tell you".  PLEASE don't wait!!!  We only have two weeks left.  Get your thoughts in order this weekend and call.  We have only had two people that aren't procrastinating.  It's ok if it's hard...it's ok if you cry.  I had to record my friend's three different times before I said what I wanted to say.  This is a priceless gift that you will give to BOTH Kyle AND his family.  So many desperately want to help the Nielson family...THIS is how you can help them this week.  So PLEASE take five minutes out of your day and call into voice quilt!

PLEASE take the time to do this.  

Tell a funny story.

Share a memory.

Family.  Friends. 

Please.

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

Just because I can say it AGAIN...shrinkage...shrinkage...shrinkage

Follow up appt today with Dr Sharma.

As reported Friday, we (STILL) have tumor shrinkage.

Tumors are stable and not putting off as much "bad"
cancer "radiation". (Best way I can explain it).

His tumor marker has gone from 77 at diagnosis to
31 (which is now in the normal range).

This (simply--sort of) detects the cancer in his blood.
(kinda).  But it's the blood marker they use to see
where he's at with his cancer.  That's all you need to know.

Good news all around.

Chemo to continue on Thursdays for another 8 week round.

Dr Sharma said that he expects more shrinking (never a guarantee, but he would expect to see it).

He said that this good result also probably pushes Kyle to the
OTHER side of the "bell curve" for mortality rates with this
cancer.   

Meaning IF Kyle had "bad" results this time (which he DID NOT) it would mean in the "averages" of 6 to 18 months survival, Kyle would be knocking on the pearly gates closer to the 6 month mark.

The good results today usually equate with jumping to the longer
life expectancy.  MORE TIME!

He ALSO said again today, Kyle will make his very own numbers
with this.  No one like Kyle has ever had this and no one knows what Kyle will do.  (He doesn't know Kyle very well yet...
he should be expecting Kyle to BREAK RECORDS!)

The one question I wanted to ask and didn't dare was HOW LONG?!

But since there is usually no predicting with this kind of 
cancer (which we've been told)--we will just take it in 9 week
chunks and hope for MANY MANY 9 week chunks of good news.


SO YAY for good numbers!

YAY for good news!

Keep us in your prayers for good chemo results and good
blood work and good responses for the next go 'round.

Let's kick some cancer A&& for as long as we can!

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.