Reality Check

We have had quite the week.

Full of ups and downs (whats new with cancer, really?)

Monday was sort of like a punch in the gut...
...for me.

...and I find it shocking that I am SHOCKED that
Kyle has cancer that can, and is, growing and spreading.

It takes my breath away.

I know I am brutally honest in real life and
on my blog.  More honest than some people can stand.

And in my HEAD I know what's going on here.

But in my heart?

Ya, well that's a whole different story.
My heart may never quite catch up with my head.

I remember standing in the kitchen after work
on Monday with Kyle and all the kids.  

I was WEEPING and I am pretty sure I was talking
and per usual I was probably gnashing my teeth.

(whatever that means)

It felt like an out of body experience.

What was this news?

HOW could his cancer be spreading and growing.
(I think I wept and asked this question out loud)

HOW? 

HOW? 

HOW?

Well, because it does.
That's what cancer does.

Josh looked at me and said, "Mom remember Dad has
TERMINAL cancer.  This is not unexpected news.
We KNEW this was going to happen at some point."

But...but....but...

(I don't want it to happen)

But it did anyway.

I have clung to Kyle all week.  It pains me to
be away from him.  My heart has ached.  The tears
have slipped silently down my face. I have felt 
anger at the Dr for not explaining things clearly.

We like clear.  We like straight answers.

We have called back several times for better
explanations.  We have consulted with our other
oncologist for HIS insight on what he sees happening.

All of them have answered this way...

...It's time to get back to treatment (chemo)
to keep pushing this back for as long as it 
will respond.

And so chemo will start again soon.

We've had questions and conundrums sorting out
money and starting dates and have finally come
up with a plan.

And so, as we've said before: 

OUR HOPE IS IN THE FIGHT.  

THE BATTLE with this brutal monster.  So
we head back to battle and hope that Kyle's cancer
will respond for just a little bit longer on the
"frontline" chemo for this disease (the Gem/Cis)
and that it will push down this nasty little 
bugger and buy us some more time.

In the meantime, I have felt a greater sense 
of urgency to be with my family and to hold 
them close.

Kyle and I have left for the past 3 Saturdays
and spent almost the entire day together...

Doing silly things like errands or dollar movies
or talking or crying or laughing.  We hold on
a little bit tighter and gather the kids together
as often as they will let us.

We understand that this is a numbers game and
that almost 11 months in--we are lucky and 
blessed and lucky to have him here still.

I received a doozy of a cancer story this week,
one that left me SOBBING, about another "brother"
that just passed away in November.  This one
knocked the socks off of me and the wind out of
me.  

It was beautiful and long and detailed and told
the grimmest of tales about "the end".

And so Kyle and I both took it in.  
It was hard, but good (in a weird way) to "see"
what will be coming down the road for us.

It is brutal.  This cancer is brutal.

(brutal)

So for now, until we get "there"--we will continue
to live each day to the fullest.

Together.

We will continue to hold on a little tighter.

We will make time together a priority.

We're so grateful for the kind dinners brought
in this week when we were so emotionally exhausted.

Thank you for just doing it.

Thank you for checking on us.

Cancer sure is a 'reality check' and this
week put the 'reality' back in 'check.'

And that's what we've got today.

Reality.

Onward to battle.

Voices of Choloangiocarcinoma. Voice #2 Anne Rivera. A Sisters Story.

Voices of Cholangiocarcinoma, Voice #2.

A Sisters Story, told by Eddie's sister:  Anne Rivera.

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

Hi Dorien!! 

Happy Monday!! 

I will try to capture the feelings of losing a sibling and how it's affected me. 

*************

I lost my brother to this horrible disease on March 4, 2013. 

(At the very young age of 46!)

His diagnosis obviously shook me to my core! 

As I am his youngest sister, I grew up fatherless so basically 

he was my father figure. 

I came across your blog on a Saturday, maybe in late April of last year. 

It was a rainy cold day in California and I remember sitting there bawling my eyes out! 

You captured every emotion that we had experienced. 
Every fear, every piece of anger, ALL of it.

It gave me peace knowing that I wasn't alone.

My brothers diagnosis wasn't just shocking because he was so young,

 but it was so unfair that he developed a terminal disease 

and left a wife and three kids behind

My brother Eddie's diagnosis was unthinkable.
 I nearly fainted when we got the final confirmation. 

With a parent I guess it's somewhat expected to lose them but I don't think 
we ever envision a death of a sibling.
 It's expected that they will always be there! 

I had some differences with my brother from time to time 
and I had regretted so many things. 

But I always thought there would be time to make it right. 
Suddenly I was faced with the fact that he would die. 
And I would not have much more time. 

At that point I made a promise to him and myself
that spending time with him was a priority. 

I knew I would have the rest of my life to travel, meet with friends, 
and lets not even talk about the career. 

I pretty much put my life on hold to walk this journey with him.

 I needed him to know that I was there for whatever we faced. 

I traveled over two hours to attend chemo days. 
Him and I would sit there and laugh and just talk or 
sometimes say nothing at all.
 I would cry, he would cry and that would be our day. 

The last year of my brothers life was the worst, 
but was the most precious.

 I truly got to spend such quality time and
 I didn't leave room for any regrets. 

I let him know how much I loved him and I assured him 
that I would be there every step, even after he was gone. 

His last few days on earth were beyond precious to me.
 I didn't leave his side. I sang to him, I read to him, I comforted him,
 and I held his hand when he left this earth. 

I wouldn't change a thing.
Although my brothers passing was unfair,
sad, and devastating it also made me stronger.

I love harder now, I don't stress over the small things.
I know there is nothing I can't handle and I don't ARGUE with my
siblings anymore. I run circles to make sure my siblings
 know I love them and we are closer.

Tragic events will do that. 

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

I look at this from time to time and reminds me of the bond siblings share 

no matter how far apart in age we are! I lost my dancing partner but everyday I know 

he's still holding my hand as I dance through life. 

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

Thank you Anne for sharing this beautiful and heartfelt story about your brother.

Again, it is AN HONOR for me to share these voices with the world.

They have touched my soul, filled me up, made me cry, made me love people
I have never met.

I have more to publish --and if by chance someone else reading this blog
would like me to share THEIR story, PLEASE feel free to contact me.

Via email:  dorienn@excite.com

OR

Facebook:  Dorien Nielson

I would love to add ANY, and all, voices to this that want to be heard.

Stay tuned for the next voice of Cholangiocarcinoma, coming soon.

PET Scan update

To any of our readers a quick note:

IF you don't like this blog?

I'm begging you please don't read it.  
No one is forcing you to.

I'm asking this in my MOST sincere kind,
loving, NON angry, passionate and from the heart
voice.  PLEASE do not read it any other way.
There is NO anger in this post at all.

Mostly just exhaustion.

IF it's too depressing, or has to much swearing,
or is "too real" or too sad or too anything?

Please don't read it.

No one is forcing you to.

If we don't have enough faith or hope
or belief in miracles? 

Don't read it.

We are pretty matter of fact kind of people.
This is how we BOTH have chosen to address this.

BOTH of us.  United.

Sadly we don't believe in unicorns and fairy dust.
OHHHH how I wish we did.  
Life was so much simpler when we did.

Believe.  In unicorns and fairy dust.

Or if you DO chose to continue reading it
and DON'T like it? 

Keep your feelings to yourself.

I will try and not judge you when you're 
going through a living hell.  When your entire
life has flipped upside down.  When you're
watching the father of your 4 kids FIGHT FOR HIS
LIFE.

Knowing what the inevitable end will be.

When you've walked a mile in our shoes?
THEN, and only then, can you make a statement about
how we feel and what we're going through.

Please don't judge our feelings.  They are raw
and real and they include anger and frustration
and hurt and sadness.

They also include love and gratitude and hope
and joy and laughter.

We feel ALL of those things.  

IF your 44 year old husband was going to die
from terminal cancer, you don't know how you
would react, or what you would feel, or think.

We have had a few not very nice messages lately
and honestly we don't appreciate them.

This blog leaves BOTH Kyle and I in a very
vulnerable place with our hearts and feelings.

And for the record, the things we feel?

They are, for the most part, the same things
everyone else going through this cancer feels
to one degree or another.

I've talked enough with my fellow CC wives to 
know this for a fact.

There have been holes in walls, crying, yelling,
screaming, hope, tears, vomiting, despair and joy
from ALL of them and their families.

ALL OF THEM.

(Kyle's a little sad I didn't manage to work 
in the F word somewhere here.  But I didn't, and 
never have actually used that real word here out
of respect for other people who may be offended by
use of that word.  I guess if you're offended by
the letter 'F'?  That's your problem.)

Now on to our news:


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


We have news.

At first we thought it was okay news...but on
closer inspection, it's not as great as we thought.

Next time I'm sending Heidi to the Dr. appt to ask
more pointed questions.

The news is that on our 8 week break, Kyle's 
cancer has spread and grown...which our Dr failed
to mention in detail at Kyle's appt.

He has a new liver tumor and more involvement in
his lymph nodes and his lungs.

Simply put--the cancer is spreading.

Never good news with this cancer.

Or any cancer.

Now for the "good" news.

The Y 90 tumor?  Pretty much dead as a doornail.

But for me, that didn't outweigh the other news.

New tumors and growing cancer give ME a pit in my stomach.

We are off to try chemo again and will start soon.

So many complicated decisions lie ahead of us.

We get to "play God" with Kyle's life depending on
what we chose.  (Just FYI God?  I never want your job!)

Dr Sharma's concerns are this:

1. Kyle will become immune to this chemo.  

   Sadly there is no predicting when that happens.
   One day he will just have no response to it and
   then we know it's not working.

2.  Kyle's platelets.  The longer you stay on this
    chemo the harder it is on Kyle's bone marrow
    and platelets.  It will eventually get to the point
    where his numbers quit rebounding and he can no
    longer stay on this cocktail of chemo.

3.  Neuropathy ....this chemo cocktail can cause numbness
    in Kyle's extremities.  When that happens?  He's done
    with this chemo too.

Anyway, we have an insurance juggling question
and a finances question and a when to start chemo
again question and then we will make our decision.

My vote is tomorrow.  

Kyle is trying to be financially sound--
remember cancer costs a LOT of money, sadly.

I want to start fighting, like yesterday.

He's trying to save a couple thousand dollars.

I usually win the fights in our house, so we'll
see who wins this one. ;)

That's what I've got for today, a little good mixed
in with some not very good.

The Voices of Cholangiocarcinoma. Voice #1 Becky

A Day In My Life- Friday

On the Outside, this is a day of my life.

I'm a wife & mother . 

- I wake up at 5:30am, my husband is in pain. I sleep next to him in a day bed, he's in a hospital bed. I grab his 5 morning pills and have him take them.

- My boys 15 & 10 years old have no 
          school today. 

          Snow Day!

- The visiting nurse showed up, she comes once 
          a week to our house to check on my husband.

- Make a call to the Dr to request a prescription, 
          it will be ready to pick to up tomorrow.

- I make breakfast, hoping I don't make my 
          husbands nausea kick in.

- He asked for a nausea pill. 

- I get everything in order so I can go out 
          and run errands. I make sure my husband has 
          all he needs next to him and his 4 hr pain meds.

- First stop, Social Security office. I need 
          applications filled out for both our sons. 
          Since to many people called in sick the nice 
          lady said I should come back next week. 

-Got a text from my dearest friend asking if 
         need anything from the grocery store.

-Second stop, The Hospital Pharmacy. I have to 
         pick up more prescriptions for my husband. 
         You can't get these at your local CVS.

-Third stop, UPS Store. I need to fax more 
         documentation to Aetna. We're still waiting for 
         his short term disability to kick in.

- Gas Light goes on, I'm on "E". I wonder if 
         there's any money in our checking account to pay 
         for gas?

- I'm home, and my husband is in serious pain. 
          Is it from the surgery yesterday? The Cancer? 
         What? I need to keep an eye on him.

- My employer got my message that I'm ready to 
          return to work.

- It's 3:30 pm. I am exhausted. 

On the Inside, this is how I'm feeling:

- Please God, take his pain away.

- I love my dog. 

- Ugg, I hope they don't fight.

- I love my kids.

- Not you again, but I smile.

- Why can't they make it a 90 day prescription 
          not 30 days.

- I love my husband.

- Please don't throw up, I know it hurts 
          your body.

- Stupid SS office people.

- I love my friend.

- I hear sirens at the hospital, makes my 
          heartbeat fast with fear.

- Crap, I forgot the fax number. I'm in a 
          public place, don't freak out.

- I'm worried, he's looking kinda yellow.

- I don't want to work...I want to spend as 
          much time with my husband as possible.

- This is exhausting.... 

~Becky.  CC Wife.  

Husband currently doing battle with CC.

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

Thank you for sharing a peek into your life Becky.

I love how so many of the "voices" of cancer are

all so different, yet so very much the same.

I have loved reading the stories that have been

sent so far and would love to post any

more that come my way.

I have had some people tell me this is the first time

they've written down their feelings and it was

heart breaking and healing all at once for them.

I have had some people tell me no one wants to

hear their stories.

I've had people thank me for being willing to share them.

I am HONORED to share your stories.

I want to share real voice of real people telling

real stories.  

THIS?  It is real life for us.  And them.

I wish I had a readership of thousands so that the

word could be spread about this disease.

I hope in sharing that it will START raising

some kind of awareness.

Stories by wives and spouses and siblings and friends.

I will try and post them each as quickly as I can.

They are the voices of courage and fear

and hope and grief and pain and ghosts and memories

and cholangiocarcinoma, and love.

Heading back to reality

Just a little update.

The holidays came and went.  The kids had a two 
week break.  It was relaxing and nice.

We ate sushi for the first time, (shout out to Danielle
and Eric!  We liked it!)  we went to movies, 
the kids relaxed with their daddy. They went
sledding and bowling and had sleepovers with cousins.
They "played" with Christmas gifts and stayed in 
their pajamas all day everyday.  They did exactly
what they're supposed to do.

On the other hand, over the break I ended one job and immediately started a new job.

The day before Christmas.  And that was fun.

(Which is going okay so far, I'm in that learning
curve where I feel like I don't know how to do 
anything right and I've decided 9 hours is a LONGGGGGG
day.  8-5, yes 9 hours away from home.  But I am 
a wimp and I know it...so what can I say?  I miss
my family so much, I hope that as time goes by I will
adjust to being away from them, but still, I miss them
A LOT for now.)

I love my commute, which is about 10 minutes flat.

The clinic I work at is HUGE (lots of people) so I
am slowly figuring out faces and trying not to get
lost in the maze behind all the check in desks.

So far, it's good.

School starts back up for the kids Monday and
school starts back up for me as well this week.

Kyle has his first PET scan after 2 months with
NO chemo and post Y 90 on MONDAY!

PET scans make us both a little nervous, they
are a good indicator as to what's happening inside
his body with the cancer.

It "lights everything up".  He's like
an inside out glow stick, only hopefully LESS
glowy.  With cancer the smaller the glow, the better.

Just thinking about it makes me want to vomit.

Just drinking the "crap" AKA Raspbarium (not the 
technical name, of course) that he has to drink
to make his innards "glow"?  Well, that makes
Kyle want to vomit.

Dr Sharma is off travelling the world and so PET
scan results will not be known for a full week.

A FULL WEEK!!!!  (The following Monday)

Be still my heart.

Don't they know the waiting is the worst part?

After which, depending on how everything looks,
we assume Kyle will head back to weekly chemo.

Although we've decided that even if the Dr. WANTS
to keep waiting?  We're not "sitting around" any
longer and letting this cancer grow for now.

Kyle wants to fight.

I want to fight.

Remember, our HOPE is in the FIGHT.

And so fight we must!

(Which includes chemo attacking those nasty 
little cancer cells.)

We've heard The Huntsman offers chemo on Saturday--
and we may shoot for that day.  It literally
breaks my heart to NOT be with Kyle
for his 6 hour run on chemo days.  So if it all
works out, I think we will shoot for chemo day 
Saturdays.  And it may not, but that's what we'll
hope for. 

I just like to be there with him.  It's good 
for my soul.  And he admitted he liked it too.

It is just one more step in the process that I 
hate to miss.  And these days with work I am
missing SO much.  Chemo days, Dr appt's, PET scans
ALL of the things I used to go to with Kyle.

And so, one more day at a time.

One more day of breathing in and out.

Work and school and PET scans and chemo.

Life just keeps cycling around and round.

I guess we're headed back to reality, although
most days for us?  It feels like it never left.

That's what I've got.

Post Edit:
We had a SUPER wonderful and thoughtful and kind
and did I mention WONDERFUL surprise over Christmas
that had ABSOLUTELY NOTHING to do with cancer.

(well, it did in a round about way, but it didn't 
at all really.)

I will be posting updates when I can about this
fun surprise that made us giddy and cry tears
of gratitude and feel spoiled and blessed and
even uncomfortable.

More to come on that. :)

(gotta keep the readership engaged with suspense right?)

Tap Tap Tap ...is this thing on

Hello out there in the internet world.

I promise I won't use any bad words, talk about 
depressing things, or tell terrible jokes in this post.

I have been contacted by a few people who have lost
people to this terrible cancer. People who have
messaged me, emailed me, or contacted me via Facebook.

To any and all of you, I am so grateful you felt
you could reach out and share your stories.

I have loved hearing about the people that you
hold dear in your hearts.  I love to hear about
the joy and the sorrow that you have been through.

Everything you have felt is real, and valid.
And no matter what anyone says, you ARE allowed
to feel whatever it is that washes over you.

For the new year, I wanted to start a new project.

I am working full time and head back to school
next week, so my blog will probably suffer as a
result.  (Some of you are probably breathing a 
huge sigh of relief...Some days I know I am.)

This year I wanted to highlight a few people.
People who WANT to share their stories.

Stories that put a real face to Cholangiocarcinoma.

Stories that make this real.

If ANYONE would like to "do" a guest post
with advice, thoughts, a highlight of THEIR loved
one, information on CC that you want to get out
there, whatever YOU think is relevant (subject
to approval from the head of this blog: me)...

Please feel free to contact me via Facebook messages
(Dorien Nielson) OR email me at dorienn@excite.com
and tell me what you want to share. (If anything).

I feel like in the world of cancers, where this
one gets overlooked so often, I would love to give
it a (little tiny) voice on my (little tiny) blog.

I would be happy to write if you want to send
me an outline.  

I would be happy to tell YOUR story.

I would love to share your message(s).

What did you do right?
Or wrong?  Do you have any regrets? What lessons
did you learn along the way?  Happiest joys?
Greatest sorrows?

I am looking for the 'human' element.

I am looking for overlooked facts.

(The only thing I WON'T take is "miracle cures".
No, seriously, I will NOT post miracle cures!)

I would love to make it real.

Let me know if there are any takers.

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

That was hard

So here's the post no one wants to read.

I hate New Years.  Always have.

Kyle hates New Years.  Always has.

What a ridiculous holiday. 

Last night Kyle was pooped from a long day of
overworking on projects.  We passed up one activity
in hopes of keeping it simple and close to home.

We had Chinese dinner take out with some
good friends and talked.

Surprisingly, about cancer.  

We are going through it and they have had 
family members do the same.  The conversation
was NOT depressing, at all.  It was just
factual and matter of fact.  

At about 10 pm, our last remaining child and us
came home.  She was tired.  We were tired.
I had worked and was pooped.  

As I lay in bed I couldn't sleep.

My mind churned.  My heart ached.  The pit
in my stomach grew.

Midnight rolled around and I was still wide awake.

Kyle lay on the bed next to me, holding my hand.
Ruby the doodle sprawled between us, snoring softly.

(Yes, it was FULL ON romantic here at our house.)

I started to cry as fireworks went off and
people cheered and hugged and celebrated a New Year.

I thought to myself "Will THIS be the year my
husband dies?"  "Will it be 2014?"

Ya, it really sucked to think that.
It was like a punch in the gut.
And it hurt.
Bad.

But THIS is the reality that will one day come
crashing down on us.  

One of the years, who knows which one, one of them
will bring that terrible fate to us.

Kyle knows this and I know this.

It was an AWFUL thought.

I hardly slept the rest of the night.

Big kids came in and said goodnight.

The dog jumped off the bed to find a cool spot.

I tossed and turned.

We can't change anything.

No matter how hard we hope and wish and try.

Kyle STILL has cancer.

We don't believe in magical cures.

Terminal is not a good word.

It wasn't the best way to start off the New Year.

And this is the post no one wants to read.

But it is our life.

It is our life.

And it is real.

I shouldn't hit "publish", but I will because I
believe in keeping it real.

This is what goes through your mind when your
husband has terminal cancer on New Years Eve.

And you're right--it sucks.
It's depressing and it's negative.

But it doesn't change the facts.

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