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. 

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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.

2013, Oh What A Year!

What a year 2013 was for our family!

Seriously, who would have thought when we rested
our heads on our pillows on December 31, 2012 
and woke up on  January 1, 2013 that our family 
would see ALL the changes we saw!

Why did we ever wake up on January 1st?

(that's what I'm thinking some days-not in a
suicidal way for heaven sake, just, well you know!
or probably you don't know, and I'm so happy you don't 
have to know!  So so happy you don't.)

I think that some people have breakdowns over
this much change.  (or much LESS change)

Or are institutionalized. 

There's still hope for that....2014 here we come!

YESSSSSSSS!!!

#oneflewoverthecuckoosnest

In 2013 The Nielson Family learned new words
like:

Cholangiocarcinoma, which both the pronunciation of,
and spelling of, can quite present a challenge. 
To humans of ordinary brain power.

It's obvious we have above sub par brain power
here in the Nielson home.  And we're SUPER humble too.

#hatersgonnahate

And I have to say, somewhat proudly, we have mastered 
BOTH the speaking and writing of this word now
and can say it, and SPELL it, in 4 languages. 

With GUSTO! 

(I'm kidding of course, it's the same in every language.)

Cholangio*freakin*carcinoma 

Yup, that's just about right!

Cholangio*motherfreakin*carcinoma 

See how it rolls off the tongue?

You try it!

But just for fun, try saying it with a heavy Italian
accent, or Spanish accent, or French accent and see
what you come up with.  Maybe even throw some Pig Latin
in there and see what happens.

I'm practicing in my mother tongue of Italian.
(With my usual swear word, or seven, thrown in).

We took a crash course in Cancer 101 and 
(sadly) learned WAY more about this bloody disease
than we ever wanted to.  

#f.cancer

We learned words like:  Gemcitabine and Cisplatin.
I like how they roll off the tongue with ease now.

Gem*cit*a*beeeeeeeeene  

CIS*plat*innnnnnnnnnnnnn

YES!  high five.

We learned what a FABULOUS staff the Huntsman
Cancer Institute has.  The nurses?  Wow!
Nurses are the best.  

#huganursetoday

Dorien went back to work.

First, part time.

Then, full time.

She also went back to school.

(And in case anyone is wondering pulled STRAIGHT
A's last semester.  This semester is Math--no one
hold their breath for a repeat of those kinds of 
grades.  But you can pray for me.  Math and me?
we don't get along very well.)

Kyle went on Long Term Disability and we switched
up the 'Mama Bear' and 'Papa Bear' roles in our home.

The kids have handled ALL of these transitions
with an amazing amount of resilience and grace.

Dorien has handled it all with a bunch of mini
breakdowns, lots of swear words, and by choosing
to remain sober.  

She gets big props for her sobriety thus far.

Kyle has been through 20 something rounds of chemo.
Evil, vile poison that has been dumped into
his body to karate chop at his cancer cells.

(cholangio*frackin*carcinoma)

He has turned 50 Shades of Gray, and Green and Yellow
on chemo days and lived to tell the tale.  And
what a tale he has to tell.  Just don't ask him 
to tell you about it.

He also went all "Radioactive" on us this November
and has earned the new nick name of "Bead Boy."

We are super grateful for the release of the
new Superman movie in 2013 as well.  Since Team Kyle
has somehow taken up with the branding of Superman--
it made any and all T Shirts and Lego's and mugs
and wall art very easy to find and keep finding.

We hope the guys that invested in Superman stock
thank us for helping to fill their pockets this year.

#teamkyle  #superman

This year we also learned about human kindness
as we saw people fill our lives with goodness and love
and help and food and gifts, big and small.  Things
that made us WEEP and things that touched our hearts.

We learned about friendship, and families and 
found in some people a bond that will never be broken.
We saw people dig deep into themselves to carry 
us on their shoulders in good times and bad.

For all of them?  We are forever grateful.

We had "Trips of a Lifetime" to New York City 
and the California beach that we love.

Both places are dear to the hearts of this Nielson
clan and we made treasured memories in the places
we have come to love so very much.

We have made new friends, wives and husbands,
fighting in the trenches with us with this
same cancer.  Some of my nearest and dearest now.
People who check in with texts and messages
and treats.  Ladies who really really really 
get what I'm going through.  Yay for Facebook.
Yay for blogs and Yay for the marvelous internet
that connected us all.

#CCWives

But seriously...

#f.cancer.too

We have a dog, called Ruby the Doodle that 
helps us keep it real.  She makes us laugh.
And you know what they say about laughter.

#bestmedicine

2013 has filled us with perhaps MORE emotion than
any other year previously.  The saddest heartbreaks
and the greatest joys.  The deepest sorrows and
the most heartfelt love.

We're not sure what next year will bring.

We hope some good and happiness and joy.

We hope more time with Kyle.  We hope for more
good health and good reactions to treatments.

We don't know, but we certainly ALWAYS carry
HOPE in our hearts.

#always

This year we learned that LOVE is really, truly
the most important thing.  It's all about love.
Love is all you need.  

#love

We hope to carry that through with us for 2014.

And so on this, the eve of the eve of New Years,
and the only free time I have to write, I bring
you some quiet reflections of our 2013.

Here's to 2014---I hardly dare to say "Bring It On!"

I'm afraid of what may be lurking in the shadows
for us, but I'm hopeful that we will find some 
happiness and joy and goodness and love mingled
in with whatever else comes our way.

I'm sure I will cry some more.

I KNOW I will swear some more.

And I know that I will continue to treasure the
thing that means the VERY most to me in this entire
world...

...My husband and my children.

Here's to straight B's in math.

Chemo that keeps working.

More sunshine than snow.

More happiness than sorrow.

More good memories than bad.

2014 here we come.

Come hell or highwater.

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