Saturday, September 28, 2013

I Need Thee Every Hour



After passing through perhaps the darkest   
week of my life this past week, and feeling 
perhaps more lost I have ever felt, someone 
on my Facebook feed posted this video today.

(bless your heart Facebook)

It was just what I needed.

I almost didn't click the link.

I'm so glad that I did.

Music has ALWAYS been the thing that speaks
to me, when nothing else can.  Always.

It touched my soul very deeply today, in a spot 
that has not been touched for a very long time.  
I sat with tears streaming down my face, sobs 
shaking my body and my heart filling with a peace 
and light that have long since been forgotten.

This song gave me a glimpse into a hope that I 
once knew.  A hope that once filled my soul.

I am grateful that my soul was touched today.

-----------------------------

Click the link and give it a listen.

-----------------------------



Wednesday, September 18, 2013

PET scan results are in

Kyle just got his results from his PET scan.

His tumor has shrunk 15% since the July scan.
(in this 8 week on/off cycle of chemo)--
66% overall shrinkage since March.

Everything is holding steady and 
NO NEW GROWTH
anywhere.

This is GREAT news.

-----------------------

Now to decide on Plan B.

-----------------------

Stress Release & A Concert


Last night after I had a mini nervous breakdown,
Kyle and Grace and I headed out to Saltair to see the
Lumineers in concert.

We saw Mumford & Sons here last year and it was a GREAT
show!  So The Lumineers seemed promising as well.
 A gorgeous sunset ushered in the evening.
 Salt Air in the backround.  It used to be a beautiful hip
place back in something like the 1920's.  Now it's a pitiful
reproduction of a bygone era.  But the back lawn is nice
for concerts.
 Grace made us change our outfits, so that she would go
out in public with us.  She said "earth tones" was what
was called for.  Apparently my usual wardrobe of black
and white wasn't cutting it for a concert and Kyle looked
like a middle aged working business man.  Go figure!

After we changed, I said the following:

Grace: looked like she was going to a concert 
(in earth tones of course).  Hip, young and cool.

Kyle: looked like he was headed out either to
camp OR fish.  Or both.  I may prefer business casual.

Me:  I looked like an old pregnant lady.  There's a
reason I wear black people.

What can you do?  At least she wasn't embarrassed 
to be seen with  us.  Although *I* was a little
embarrassed to be seen with Kyle and I. (ha ha)
 Grace and her daddy.  If EVER there was a "daddy's girl"
this is the it.  She is the one.  She is always snugging
with her dad, laying on his shoulder, holding his hand
and just plain being close.  She is a very affectionate
child and the power of touch is how she communicates.  
It's very sweet to watch.
 The fisherman/camper and the pregnant lady.  We're so hot.
#hot_old_people   <<<<< That, by the way, is a sarcastic joke.
                        I mean, just in case you were wondering!
 Salt Air, waiting for the Lumineers.

All in all the concert was sort of a bust.  Sadly.

Other than time with Kyle and Grace, a beautiful sunset
to look at and Chinese food.  The wind was blowing and there
was lightening in the back round (WAY WAY back round).

So after the warm up band of the warm up band, they 
tried to move the show from the stage to the balcony
of Salt Air, which if you know Salt Air....that doesn't work.
It was a JOKE!  The Lumineers came on, sang 5 songs (they
don't have to do a refund at this point) FROM the balcony
and called the show.

We spent 1/2 hour with music and 3 hours driving back
and forth and waiting in the parking lot to drive home.

It was kind of a BIG BUMMER, but what can you do?
(If you go read The Lumineers Facebook page, we are not
the only disappointed fans from what I'm reading.) :(

-------------------------------------

In other news, a sweet neighbor dropped by some 
STRESS RELIEF body lotion and bath gel.

I'm wondering if I drink it if that would make
it work faster?

Can't hurt can it?

(Probably it can--so I won't.  I'm rubbing it all over
my whole body today!)

PET scan this morning.  We forgot to schedule a 
"results" Dr visit...seriously how lame are we?  So
I'm not sure WHEN we get the news.  Our next Dr visit
is in 2 1/2 weeks and you better believe I'm NOT
waiting THAT LONG for results.

----------------------------------------



Tuesday, September 17, 2013

Get Your Free Stress Here! Stress for Sale!

 Yesterday Kyle and I drove to our 3rd Doctor appointment
for a 3rd opinion on this 'next step' in Kyle's treatment.

You can never have too many opinions, in my opinion.


Especially when you're talking about your husbands LIFE!

I keep telling him I don't want the burden on me that
we didn't investigate every avenue open to us.  And 
that we didn't listen to every good opinion.  And that
we didn't really study and think about this 'next step.'
And that we didn't gather every bit of information we
could, wisely.  To make our decision.

When you're not a doctor, you can only do so much.

You can listen, and get opinions, and research, and 
google, and read literature, and get more opinions.

But at some point you have to decide what to do with
all the information you have.

That's really scary (I'm not going to lie).
And that's really hard.

As we drove to the appointment, I said to him that surely
if someone could bottle, or harness, the amount of stress
we felt in the car at that moment, it would be enough
to power a small city for a weeks time.

Maybe two.

No, seriously.

It was oozing out of us in currents you could tap into,
quite literally, it was palpable.

After an hour long wait to see our original oncologist,
the one who taught us words like "cholangiocarcinoma"
and "gemcidabine" and "cisplatin", we were seeing him
again.

We really like Dr. W.  It was NOT because of any 
ill will, bad feelings, or reasons to distrust him,
that we left his office.

We simply went for another opinion and liked where we
landed.  It has gone well with Dr. S. and Dr. G
and Shelley and Angelique and all the staff at Huntsman.

We have been oh so pleased with ALL of them.

But we were back in Dr. W's office for his take on 
the new way doctors want to lead Kyle.

He leaned back in his chair and told us he was nervous
to see us.  He didn't know how things had gone with 
Kyle.  He didn't know if Kyle was one of the "non
responders" to chemo, and if what he would see in
his office would be a sick, yellow, dying patient 
pleading for help.

He was happy to see a robust and relatively healthy
looking Kyle.  He was thrilled with Kyle's progress
so far.

He confirmed that he would do EXACTLY what the other
2 doctors were suggesting.

Dr. W is a "straight shooter, get to the point, not
mess around" kind of a guy.  In our experience, we have
come to REALLY like straight shooters.  It makes it
so much nicer to just get to the point without a bunch
of fluff.  

When you're getting married?

Fluff is great.

When you have cancer?


Forget the fluff!  Just get to the point please.

He said to Kyle if HE (Dr. W) were sitting in Kyles
exact spot, he would ABSOLUTELY do the next treatment.
Even as a doctor, knowing everything he knows.

He feels it is a good plan.  A really good plan.

We left his office feeling a huge burden lifted.

Now it's NOT a guarantee that everything will be
perfect.

It's not a promise that Kyle will not be one of the
guys that doesn't respond to Plan B.

But what it is, is a confirmation that it's not
a bad choice in this fight.

Dr. W also likes to talk about survival odds for
Kyle in terms of years instead of months.  He was
very optimistic about this.  

Again, there is never ever a guarantee with cancer,
but he has seen enough to at least give us his best
educated guess.

-----------------------------------

For now, we think we are leaning toward a Plan.

------------------------------------

BUT,

and there's always a BUT with cancer, isn't there?

Tomorrow is the next PET scan.

You know---where they look inside Kyle and see
what's up with the old CC.

We hope for shrinkage OR

We hope for stable.

Then we go from there in a decision with Plan B.

-----------------------------------

In other news?

I took the 2nd job.

I still don't feel good about any job and am
second guessing starting so many new things at once.

I can only handle so many new things and in 
some ways I feel like I would like to get one
semester of school under my belt and see how I do 
THERE, before I add "job" into the mix.

I don't do well with change.  And it's being
heaped upon me in "super-size" portions right now.

I'm feeling very conflicted about jobs and 
school and cancer.

On the other hand, money is good.  Life is 
expensive and in addition to the old cancer card
we have 4 kids, other expenses and "life" in 
general to pay for.  

Things like car repairs and braces and groceries.
Oh My!

So a job for me isn't all bad in that department.

And experience is also a good thing as well.

------------------------------------

Oh ya,

and school started and I am feeling (more) stress
from that too.

Can a human being implode from stress?

Or maybe explode?  It might be the cool makings
of a new science fiction thriller.

Move over Angelina Jolie!

I'm starting to think it's possible.

-----------------------------------

Remember the stress we're talking about 
packaging and selling?

I have a bunch if anyone is interested.

I hear it's bad for sleep.

And eating.

And your whole body in general.

Who doesn't want some?

Come on, I know you do!

------------------------------------

Hopefully we have some more answers tomorrow
after the PET scan.

-----------------------------------

I did get a 95% on my first college quiz in 
20+ years.  (It should have been 100%).

-----------------------------------

Stress, it's what I've got for today~


















Saturday, September 14, 2013

The Usual and The Unusual

Yesterday we finished another round of chemo.

Kyle turned his usual grayish greenish yellow.

No ifs, ands or buts about it--
he looks awful in that color.

We had the usual steady stream of visitors.

We got in the usual trouble with the nurses
for having too many visitors.

It was just a usual chemo day.

What was unusual about the day,
was going to another Doctor
appointment AFTER chemo.

Yesterday was the 'big day'.

Our meeting with the interventional radiologist.

He was a super nice kid.

Ya, kid.  All these doctors are starting to be
younger and smarter than us.

But we liked him.
I dare say we liked him a lot.
Liking your doctor is a really good thing.
Especially when you have cancer.

He's a Montana boy  moved to the big city.
Lots of big cities, to be a doctor.

He discussed all the treatment options with us.

Explained the pros and cons.

Radioembolization.

Chemoembolization.

Then he said, "Go home and think about it, 
it's your decision."

There are always pros and cons with both things.

I asked what he would do if it were HIS wife,
or his child, or HIM sitting in the chair.

He gave us his opinion.

Who knows what that means, right?

We have some big decisions ahead of us.

I'm not sure how we will decide what the next
step is.

I mean we have, and will, research and think
and discuss and digest.  This is just
a huge step in a direction and it makes me
nervous to 'choose wrong'.

It is an unusual time in our lives.

-------------------------------------------

Kyle's PET scan is next week.

We peek at how things are growing, or not
growing, inside of him.

As usual, we hope for shrinkage or stable.

Stable works too.

In this instance, we hope for nothing unusual.

------------------------------------------

In other news, I had another interview for
another job on Thursday.  I came home CERTAIN
I had bombed the interview.  Kyle (who 
interviews and hires people all the time) even
told me I said "all the wrong things".

I was honest.  I guess you're supposed to 'lie'
and make yourself look good.  How was I supposed
to know that?

I laughed and said it's all good experience.

While we were at chemo on Friday, they called 
and offered me the position.

I don't know what to do.

I have no connections with magic balls or 
magic answers at the moment.

There are pros and cons (just like with Kyle 
and HIS choices) with both of my job options.

It has been a rather unusual year with lots
of hard decisions so far.

----------------------------------------

It has been a week full of things both 
usual and unusual things.

Which, now that I have typed those words out
and said them in my brain so many times, they 
BOTH sound unusually weird to me.

---------------------------------------

We hope to have a week with some answers.

We will take them anyway we can get them.

In usual ways, or unusual ways...

...it makes no difference to us.

------------------------------------

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


------------------------------------

Hey, it could be worse right?  My sister
texted me from Arizona last night.  They
flew in for my nieces (other) wedding 
reception.

She said it was 106 degrees at 9 p.m.

Her husband told her to turn the AC up in the
car it was so hot.

The bad news?


The AC was already full blast on the coldest
setting.

I actually will take grayish yellowish green
chemo days over 106 degrees at 9 pm---
any day of the week!

I'm counting my blessings.

And see?  I certainly have many! ;)






















Thursday, September 12, 2013

In The Know

Grace Catherine just texted me and asked me 
a cancer question.  (And I always use her full
Catholic sounding name when I'm talking about
her, or when she's in trouble.  Not that we're 
Catholic.  And not that she's EVER in trouble.
Ahem.)

She used the word "mets" in her text.

'Mets' is short for metastatic cancer, 
which means cancer that has spread from it's 
site of origin.

(I couldn't even pronounce 'metastatic' correctly,
in the beginning.)

MET-UH-STAT-IK (...in case you're wondering).
Say THAT 3 times fast.

She was asking a question about a cancer that
had spread from breast to the bones and liver.

I said it probably wasn't a good thing.

A bone and liver "mets" usually are not 

EVER a good thing.

Listen people, you just don't want cancer
to move ANYWHERE.

And you especially don't want cancer in your
dang liver.

But she said she already knew that,
she told me.

I texted back one last time and said I wasn't 
sure that that I loved the fact she knew that.

Seriously, should a 16 year old KNOW that?

I didn't love the fact that she KNEW that
and was using the word "mets" in a text.

She responded that this our life now.

We know these things.

There are some things I'd rather not EVER have known.

But now cancer, and 'mets', and spreading, and good,
and bad places for cancer to be, are things we DO know.

We could teach a (short) class on cancer, as a family.

Does anyone want to come?


I will serve treats.


I make GOOD treats!


The treats would be worth it, I promise.
The cancer stuff?  
Not so much.

I guess you could say (sigh) that we
are 'In The Know.'

Some days?

I would love to go back to being stupid about cancer.

Really really stupid.

-------------------------------------

And for the record, in case anyone is panicking,
the text was NOT about Kyle.

And for the other record, he already has cancer
in his dang liver.

And he already has metastatic cancer.

Which is why we are 'in the know.'

------------------------------------

I ALSO know a whole bunch of new swear words
because of cancer too.

Well, actually that's a big fat lie.

I always knew them.  

Now I have just learned to arrange them in 
longer, and more colorful phrases, around the
word 'cancer'.

I guess you could say I'm 'in the know'
in regards to swearing.  And cancer.

In the same sentence.

I will count my talents where I can at 
this point, right?







And this is Grace Catherine.

My beautiful daughter with 
the fake Catholic name. 

Who knows about 'mets'.

Wednesday, September 11, 2013

New Respect and Some Updates.

Many years ago I was a 'working mother'.

As in, I actually LEFT my house and went to a job
AND had children.

I am doing it once again and boy oh boy
do I have a new respect for all of you
working moms.

The ones that LEAVE the house and have
jobs and then come home and do the 'mom job'
after you worked all day.

I am TIRED--it's a lot of work, to well, WORK
and be a mom. 

My hat is off to all of you, after ALMOST finishing
week one of on the job training.

Besides that, money is a good thing right now.
Cancer and the future and finances are, well,
frightening to think about some days.

So even though my paycheck is close to "meager"
and not far off of "pitiful", it's better 
than nothing.

A little extra money, and experience in the 
working world again, are both good things.

It's something that's here to stay for me.
For, forever probably.  (working and being a mom)

So I may as well get used to it.

Still keeping my eyes open if anything else pops
up---this job is not a perfect fit, but it's a 
start,  and I want to keep ALL options open.  
In the meantime, I am learning new things and 
that's never bad.


---------------------------------

This week after Round 18 (holy COW!)
of chemo, Kyle and I will meet with the 
Interventional Radiologist to discuss
some new treatment options.

We are still not 100% sure WHY they want to
take him OFF of chemo (since it seems to be
working so well) and try a (what they call)
"directed therapy"  (one that is targeted
right at his main liver tumor.)

We kind of think, "If it's working, why mess
with a good thing?" Right?

But we're not Doctors, so (unfortunately)
what do we know?

We also have another opinion about all of this
on Monday with another oncologist in the valley.

(We were encouraged by the Doctor to get a 
second opinion, which I like).

This whole deciding what to do is very
very stressful though.  What if we make the
'wrong decision'?  What if everyones 
'best guess' goes south?  We like where
we're at right now.  

--------------------------------------

We will update with information when we have 
something to share.

PET scans follow chemo next week as well.

An 'inside look' as to what's going on.

Always a bit nerve racking.  
We like living with stress.

Heck, when this is over I plan on inventing
a new body scent line called "Stress".

OR I could call it "Distress".

I think I often find myself in that state 
right now.

A state of distress.  Or stress.
Take your pick.  It's all the same anyway.

Something you can rub on, bathe in, use for
Shampoo and Conditioner and spray on for perfume.

That's pretty much the "scent" we've been
living in/on/surrounded by for the past 6 months.

There has to be a market for it right?

(Or maybe the BETTER thing would be to invent
a Stress Relieving scent....possibly that
would be a bigger seller?)
--------------------------------------------

School starts for me next week as well.

So far, so good.

We've added a job to the cancer mix and 
school is coming.

I still haven't had a nervous breakdown
with all of this...

....so far.

I'm making no promises though.

If you see me laying somewhere in a puddle, incoherent 
and drooling, kindly scrape me up off of the 
sidewalk and pat my hand gently and just
keep saying, "It will be Ok Dor, it will be
Ok!'

I may not hear you.  
And I probably won't believe you.
But it may help to know someone cares, right?

----------------------------

Until we meet again...

This is what I've got for today Peeps!




Friday, September 6, 2013

HEY YOU GUYS!!!!! (In my best Goonies Movie Voice)

Dear All of You Guys:

6 months ago today Kyle was diagnosed with this (please insert swear word of your choice here) cancer! Today as we head up to chemo (yay for chemo!) just a quick shout out and THANK YOU to the countless people who have helped make our lives easier, better, full of love, texts, food and fun. We COULD NOT have made it this far without each of you who have contributed to our lives on this journey. 

To those who have reached and touched our lives--THANK YOU!!!!
We are SO GLAD Kyle is still here fighting the good fight. So so glad!!

We're off to kick (and karate chop and sizzle and snuff and annihilate) some more cancer cells today!

Love, Kyle & Dor


P.S.  And please tell me you've seen The Goonies!   Classic Spielberg from the 1980's.
P.P.S.  Reposted from Facebook for any of you that are NOT on Facebook!

Wednesday, September 4, 2013

It's ALMOST criminal...

Today I was fingerprinted for the first time 
in my life.

I guess that's a good sign, right?

I've kept out of the prison systems up until now.

And actually I hope to STILL be avoiding
any brushes with the law for the foreseeable future.

No promises, but I will try to NOT disappoint 
my fans, followers and family.

That's A LOT of 'F's'.

Why in the world were you fingerprinted then?
You ask.

Well, I officially got a job last week.

In some ways, it's almost criminal how easily
it fell into my lap.

Quite literally.

A friend told me.

I called them.

They called me.

I had an interview.

I was offered a job.

No seriously, it went like that.

Now, in the grand scheme of things, it's not
my "perfect job".

The pay stinks and there are NO benefits.
Things like insurance and health care and all 
that jazz.
(Something I need to get sooner or later, 
mostly sooner)

BUT, its a start.

And as my new boss, Deb told me, "It's easier
to find another job when you ALREADY have a job!"
(That's her philosophy anyway.  She's pretty 
fabulous, she knows our situation and I like
her already)

On the plus side:

It's 19 hours a week.

It's close to home.

It's during the school day when the kids
are gone, leaving me time to do my OWN
schooling online and at night this first year.

It's flexible, so I can work around Doctor appointments
and Kyle's schedule, which is VERY important to me
right now.

So there you have it.

My official announcement.

WORK & School.

(And still with the cancer stuff).

If all of these things don't push me over the edge
of insanity, I may just make it, for now.

Oh ya, and WHAT am I doing? 
(you ask)

I am the "Transitional Specialist" up at Skyline 
High School (Sorry Olympus High peeps, 
I know I'm going into enemy territory--
maybe I can spy on the football
team or something for you?!)

I will be working with Special Ed kids and helping
them learn how to "transition from High School"
to "the Real World".

What will I do?  

I'm not sure yet.

Training starts next week.

I'll keep you posted.

Almost criminal.

That's what I have for today.