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! 

Cancer 101

People have asked us some questions that are now "old hat" to us.

But they are not "old hat" to many of you ...

So here is a brief rundown of a few questions that keep coming up.

1. What does terminal mean?

*an advanced stage of a malignant neoplastic disease with death as the inevitable prognosis.

*A malignancy which is expected to cause the patient’s death in a short period of time—i.e., weeks to several months to a few years.


This means that at this point, because of staging and because of the fact that the cancer has spread from the point of origin (the liver) it is terminal cancer.

See above (horrible) definition of terminal.

There is no cure for terminal cancer.

Not just Kyle's kind of cancer, any kind of "terminal cancer" (or terminal illness) falls into this category.

Period.

They can treat it.

They can treat the symptoms, but they cannot cure it.

Treat vs. Cure.

See the difference?

We are treating Kyle's cancer for as long as possible.

I know people say a "miracle" can always happen, which I suppose it can.

But the reality is, that will probably not happen.

Sorry to be "Dorien Downer", but I have yet to see a "cured from terminal cancer" or "raised from the dead bible miracle" in my lifetime.  

I would be happy for a first here and now.

I would jump for joy.

I would take the miracle.

Don't get me wrong.

I would.  I would.   I would.

(OHHHH how I would!)

I have HOPE for time and HOPE that my husband will be 
one of the strong ones...but I am not holding out much hope he 
will be here to celebrate our 50th wedding anniversary.

I suppose that makes me faithless?

Or grounded in reality?

Or some of both.

You can throw rotten tomatoes at me if you want to.

Here's the thing, I am prepared to fight with my husband for as long as possible and hope for the very best, longest amount of time he can get with a good quality of life.

I have taken a hold of his hand.  We are facing forward.

Somedays with tears streaming down our faces.

But we are bending INTO the wind and walking.

Backs straight.  Chins up.  (Thanks Joan!)

Superman shirts on!

Ready to battle.

I hope for YEARS!

I hope that Kyle is one of the lucky ones to get YEARS!

That is ALWAYS my hope.

Every waking moment of every single day.

Every breath of every waking moment of every single day.

Every single day.

But NEITHER of us are willing to go down the road of prolonging life when it gets to the point that being "here" means no more quality of life. 

For that is no longer living.

Time will tell "how long" terminal will be for Kyle.

It is an ugly fact of this cancer.

I think we're all pretending a little bit this will not be the case...but no Doctor has given us reason to think anything else at this point.

Neither has God actually.

We weren't promised any miracles, or any healing by the Big
Guy upstairs either.

Sadly.  For I so wished to hear that.

So I guess we can all be mad at the doctors, and at God.

Couldn't ONE of them have "fixed" this if they wanted to?

(I personally am not mad at either--but just in case you 
need someone to be mad at...don't shoot me, I'm just the messenger, or blogger in this case!)

So, for now, Kyle is receiving chemo to extend his life.

We will take a HUGE extension if that is granted to him.

Here's the thing...

We are ALL "terminal"....

...some of us are just a little more "terminal" than others.

2.  "I have a friend with liver cancer too..."

This is not always the case.  

Cancer is classified by WHERE it originates.

So lets take Kyle.

His cancer started in the liver.

It has ALSO spread to the lungs.

However, here's the tricky part.

He does NOT have lung cancer in his lungs--he has LIVER
cancer in his lungs.

Metastatic cancer that has spread from it's point of origin
is still (almost always) the kind of cancer it started out as.

In his case, Liver Cancer.

The cancer in his lungs?  Still called liver cancer--weird huh?
(NOT lung cancer).

If you have a friend with breast cancer, or colon cancer, or lung cancer...and it has metastasized (spread) to their liver...it is NOT liver cancer.

Clear as mud?

Okay, let's rinse and repeat...

Cancer is named by its "origin point".

Liver cancer starts in the liver.

It can spread to ANY other body part but is still liver cancer.

Breast cancer that spreads to the liver, is well, still breast cancer--it's just in the liver now.

The KIND of cancer you have also determines the type of treatment you receive as a cancer patient and also your prognosis.  (As some cancers are more readily and easily curable than others).

#3.  Why can't they just operate and take out his liver and/or those cancer tumors in his liver?

The BIGGEST reason is because his cancer HAS ALREADY spread to other organs.

THIS IS THE BIGGEST REASON.  It has spread.  That is always bad news.  Period.  No one wants the spreading kind of cancer, they want cancer that has rooted itself firmly only in one spot and has not moved.

Anywhere else.

It's better that way, trust me!

Even if they took out his liver (or tumors in his liver) via resection or a transplant, he would STILL have liver cancer in his body, in other locations.

And because it has already spread, it is back to #1. 
(terminal and not curable in the case of liver cancer).

There is no way to STOP the growth of the cancer cells at this point.  

We can "slow them down, halt them, retard their growth (via chemo)--but not stop them...as in "put an end to them forever" kind of stop them.

It has, as they say, "left the house".

Or in his case, "left the liver".

Another reason an operation is not an option is because his immune system is already "fighting" the cancer inside and outside of his liver.

It's fighting hard!!!

The doctors explained it to us by saying that IF a doctor were to remove all, or part, of Kyle's liver then his immune system (which is already fighting the cancer there and other places) would be SO weakened in trying to recover from a surgery, or transplant, it would no longer be able to suppress the remaining cancer cells in his body and the cancer would basically "explode" everywhere inside of him.

Basically like a small time bomb going off inside of him--killing him even more quickly.

We don't want that happening.

And thankfully neither do our doctors.

Remember that "time" thing we're trying to buy here?

We want LOTS of it!

Lots.Lots.Lots.

Time is good.  It is our friend now.

We hope to become BFF's with it by the end of this journey.

We hope to reach up and embrace yards and yards of time.

Whole yarn skeins full of it!

We hope to bath in it and have it drip off of us luxuriously!

We love time.

#4.  What about people who have cancer surgery and then have chemo and/or radiation?  How come they can do it and not Kyle.

I don't know everything there is to know about cancer, but am assuming in what I've been told and learned in all my research that a person that is able to have surgery and then chemo/radiation is more like a stage 1 or stage 2 kinda guy or gal.

Possibly stage 3.

The cancer has probably NOT "left the house" (or place of origin).  So therefore a Doctor can remover the cancer from it's primary location and then chemo or radiate the &*@# out of that spot in the hopes of killing off any tricksy remaining cancer cells that may have been missed by surgery.

Those cancer cells?  They like to hide and then pop up again
in the most surprising places.  

They are pretty Bad-A cells.

It's all about staging and metastasizing and those kind of (not so) sexy words.

The bigger the number of Staging (1, 2, 3, 4) the more awful the prognosis.

The farther the spread...well, again the less anyone can do.

#5.  When will chemo end for Kyle?

Pretty much...

...never.

He will be on some kind of treatment, possibly chemo, for
as long as he has time left.

Sounds fun huh?

At some point the cancer will outsmart the chemo and not be stopped by it anymore.  (those tricksy cancer cells!)

Meaning it will grow and spread some more.

No one knows if that will be after one round of chemo or 
10 rounds of chemo or 20 rounds of chemo.

There is no predicting at all what the case will be.

Each person is different.

Each person responds differently to chemo.

Each persons body does its very own thing in terms of statistics
and numbers.

Kyle will be his very own number.

In the end, either chemo (and the bad side effects) will be too much for his body to take anymore.

OR, the cancer will be too much for his body to take anymore.

And it will be time to give one, or the other, or both, a rest.

We're banking on time though.

With either, or both.

If anyone has any other questions?

You can leave a question in comments...I will try and answer it.

Cancer 101--that's what I've got for today.

comfortable old shoes

I hope the Palmers are okay with being part of a blog post.

I also hope they are okay with being referred to as 

"comfortable old shoes."

Because we mean it in a good way.

The best way possible.

Last night we went out to dinner with these dear, old

(as in long time, not ancient) friends.

Although we are sort of getting old...as in the ancient way.

Sort of.

We have known them since our oldest children were new babies.

19 Years.

That is a long time.

Our kids grew up at each others houses, inseparable.

Hours upon hours upon hours of play and legos and forts

and dolls and house and sleepovers and camping trips and

family trips.

Kyle and Brett served in numerous Young Men and Scout callings

together and Lisa and I tagged along, sometimes even on the

camping trips, to be a part of the fun.

When it comes to Good People?

These guys are the definition of "good people."

We see them much less now that time and life and distance

has separated our families...but we ALWAYS see them once 

a year at an annual Christmas Party we have with a group

of (equally "good people") old friends.

These kind of friends are the best kind.

They are like that comfortable, favorite pair of old shoes

laying in the back of your closet.

The kind you have loved and worn and they match everything.

They are cozy and well worn and may be tucked away in the closet,

but are never forgotten.

You still love them just as much as the day you bought them,

even if they are not used everyday now.

They are the kind of shoes that sometimes get overlooked because of the glittery new shoes in the front of your closet that you now wear a little bit more.

But one day, as you're digging around in your closet, on your hands and knees, you dig a little deeper into that pile of shoes and pull out your favorite old pair.

You hold them up in front of you.

Your face lights up with a smile and you remember all the good

times you had with these "old shoes."

Your heart is a little happier just at the sight of them, and you sigh with delight as you slip these shoes on to your feet.

They still fit.

Just like always.

They are still JUST like you remembered.

Comfortable, cozy.

The BEST kind of shoe!

(And this comes from a lady who LOVES herself some shoes!)

The Palmers are (some of) our best "old shoes."

And so we sat and ate dinner with them last night and talked about Kyle and cancer and kids and life.

The fit was still good.  Their words kind.  Their actions

loving.  Their intent the very very best.

Old shoes.  

We sighed deeply, and smiled, and slipped right in to an old

cadence and pattern and memories of good times with them.

We were ourselves.  

There was no worry of saying the wrong thing, or judgement, or anything, other than being ourselves and eating and talking.

We left with big hugs and kind words of love and promises to get

together again, and more often and just "be."

As we got in the car and drove home through the darkening evening skies, I became quiet and Kyle asked me what was wrong.

My voice caught in my throat as I tried to explain how I felt.

Melancholy.  

I was feeling the deep, pensive, heavy sadness of this sweet moment.  It was tender and sweet, yet the reason for it was heavy

and hard.

But not in a bad way.

Is it possible to be sweet and heavy in the same breath?

The same moment?

I have found that during this journey the answer is yes.

I found myself reflecting on many years of goodness and associations with AMAZING people in our lives.

Kyle and I often look at each other and wonder "HOW? did we

get so many good (as in "old shoe good") kind of friends?"

We feel so many deep, and lasting, connections with SO MANY great people in our lives.

It is so sweet and tender to feel them gathering around us now.

At this time.

For this reason.

So sweet.

It also is heavy, because of what lies behind the "gathering".

(cancer)

That one word I've talked about that never goes away.

Do you see what I mean?

(cancer)

It's always there.

That word.

In the gathering together of people around us now.

That's not a bad thing.

It just is.

It just is.

So today, today we are so so very grateful for all of our

comfortable old shoe kind of friends.

The people that come and gather and let us be.

The kind that are not afraid to circle and love and hold.

The kind that come into the "dark" with us and are not afraid.

The kind that step out of our figurative closets during the

darkest hours of our need.

The kind that are not afraid to grab our hands and hold on tightly and face this battle together.

The kind that are still here.

Even when it may be easier to not be.

The kind that bless our lives everyday through love and acts of kindness and goodness.

Thank you for still hugging our feet.

Thank you for still fitting.

Thank you for coming out of the closet just when we need you

the most.

Thank you for being our comfortable old shoes.

We love you so very very much.

All of you, you comfortable old shoes....

That is what I've got for today!

This is what it would look like if Jesus showed up at your house....

I don't mean to get all religious here.

But today I am overwhelmed.

Beyond words, which if you know me, is rare.

Sometime shortly before Kyle's diagnosis I was talking

with some friends online.

They were speaking of hard times, heart ache, and tragedy.

And lack of response from wards.

I said, "Well, if you EVER want to go through a hard time--

my ward is the place to be.  When they step up, they REALLY

step.up.  They are amazing!"

Little did I know I would be on the receiving end of "stepping up" so soon after this conversation.

(darn it!)

Today at 7 a.m., people started showing up to tear off our

old roof and give us a new one.

Before Kyle...well, goes.

So that we have one less thing to worry about during treatment ...and afterwards.

For peace of mind that all things would be in order for us.

We really needed a new roof.

Like really, really.

As I sit in my house (literally weeping, like snot dripping from my nose weeping, like body wrenching sobs weeping, like I forgot my waterproof mascara weeping) at the kindness from these people, these men, these fellow human beings...

I am overwhelmed.

I think,

THIS is what it would be like if Jesus took a day off of work

and showed up at your house.  To love, and serve, and give freely 

of His time. 

And then I think, WAIT!

This *IS* what it looks like when He shows up at your house.

In the form of many many men.

Taking time off of work to be here.

Young and old.

At 7 a.m., I thought SURELY no one will come, can come.

It's Thursday and people have jobs.

Then people started showing up.

And kept showing up.

And are STILL showing up.

My roof is coming off quickly.

Breakfast showed up for the men to eat.

Another kind soul brought it by for them to eat.

No one is complaining.

People are missing work.

Lots of people.

To serve us.

To love us.

To act as He would.

There is literally NO WAY we can ever "pay back" or give enough

thanks for this act of kindness.

NO WAY.

But we will give a HUGE shout out to the Olympus 3rd Ward,

and all those men, and women, who are loving us through this act.

This act that is very very humbling to accept.

(Who deserves something like this?)

So... 

Thank you!

Thank you!

From the very bottom of our hearts.

For just when another moment comes, and we think that we 

cannot move forward through this journey....something else

happens to give us the strength to carry on.

Thank you, all of you, for being "Jesus" today for the Nielson family.  For acting as He would.  As He taught us we all should act.

We are so very blessed to be a part of something bigger than 

ourselves.

We are so very blessed to be a part of this group of people.

It's time for me to go put on my waterproof mascara and

face all of you.

There is still A LOT good in the world, 

Just in case you thought that there wasn't.

(After Boston and all)

A LOT of good in the world.

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