"To discover what is abnormal…

it is first necessary to know what is normal."

Wow… that sentence could cover a lot of issues; behavior, relationships, habits, heck… even pizza crust!
But in this case, it’s referring to breast tissue and how it relates to breast cancer.

My friend Josie emailed me a few weeks ago to share her enthusiasm for all the good works being done in her home town of Indianapolis to help find the cure to breast cancer. She had participated that weekend as both a volunteer and donor for an event she thought I would also love to volunteer for if given the chance; The Susan G. Komen for the Cure Tissue Bank (KTB) at the IU Simon Cancer Center.

The way I understand it, in 2007, the IUSCC was awarded a $1,000,000 grant by the Susan G. Komen Foundation to help fund their collection of breast tissue from “healthy” women. By “healthy”, they mean without cancer. This was in response to action taken after a 2004 series of meetings in Indy of prominent scientific, medical, industry and advocacy communities. A cancer researcher attending those meetings surmised that a lack of normal breast tissue was a significant impediment to the success of her breast cancer research. It was quickly assumed by some in attendance that even if there was a mechanism for donation in place, and the (unlikely chance) that the review board would approve such a collection, the real question was, quite frankly, “what woman would donate healthy breast tissue?”

It was the advocates, led by Mrs. Connie Rufenbarger who challenged the naysayers by asserting “their unshakable belief that women would donate, they only needed to be asked”.

And answer they did; in just a few short years, the Susan G. Komen Foundation recognized their invaluable work and has supported it with grant monies ever since. Josie was one of those brave women who donated both time and tissue this past June 13th. KTB, she informed me a few days later, will be having another “Tissue Collection Event” on August 8th.

So little ol’ me and my friend Robin, whose own mother Lois is a breast cancer survivor, will board a plane to Indy on Friday August 7th. The KTB is particularly interested in people like Robin and I who are healthy but considered “high risk”. On Saturday they will give us what is equivalent to 3 needle biopsies and remove about two “pea size” amounts of breast tissue from each of us. Josie and her husband Ned will supply us with wine, fresh ice packs and I’m sure lots of laughs that evening before delivering us to the airport for an 8a.m. flight home.

I told Robin I’m a little nervous.
She told me she’s more than a little nervous.
But then I remember TC and my friend Dini’s brave faces every time they got poked, prodded, scanned and downright manipulated.
And I know…

“As a healthy woman, I can contribute to breast cancer research.”

So I will.


To find out how you can participate, go to: https://komentissuebank.iu.edu/home

Addendum (7/22/09)

Apparently my blog was passed on to the powers that be at KBT and I was thrilled to receive personal emails from both Dr. Jill Henry, the Chief Operating Officer who would like to pass it along to the Indy press! And the following words are from Connie Rufenbarger herself:

This just put the biggest smile on my face! It is so wonderful to see our passion shared by wonderful women. We all so want to change history--to not leave this legacy to our daughters. We thought we would find other women warriors--but you never know until it happens. At some point--all of us will be part of something even bigger--we are showing the Powers that Be that we can and will decide what level of giving of ourselves is appropriate. At the present--the ethicists and review boards are guiding our decisions/choices--our collective choice will help them to stand aside and let us make history in all diseases. Ok--I have to get off of my soap box. We are thrilled that you are all coming. Each event is a celebration. I got to do the fat core from my bum last time--since I have saline breasts it was the only way to get one of the pink t-shirts. What we will do for fashion!!!!
I am always on hyper drive at the events--just more excited than is natural--so--please come up and make me stand still and introduce yourself. We have all become great huggers!

How cool is that!!! cb

It’s Been a While…

But in some ways, it’s been no time at all.

I’ve got a thousand excuses… why I’ve been away.
But no real reasons.

What I can say, and what I do know, is that after many cloudy days…
The sun has risen again.

And now, it is planting season.
My favorite time of year.
A new crop to nurture, love and eventually reap its rewards.
Not unlike life, in it’s most barren form.

Today is Mother’s Day.
A time for celebration…perhaps.
Unless you doubt your value, your effectiveness, your skill.

I did.
Until tonight.
My kids were great today…granted.
But it is, after all, “Mother’s Day”…they were on their best behavior.

It was later in the day, went Brent and the boys came over for dinner.
This is their first “Mother’s Day” without Dini…they’re Mom, my friend.
Awkward? No.
Painful…yes.
But in the end, peaceful.

We laughed, we cried, and we wondered.
Are we doing enough?
Do they know we love them?
Will they be alright?

The fact of the matter is that we don’t know for sure.
We think we do, but we don’t know; not without a shadow of a doubt.
There is no room for error, when it comes to these boys.
We’ve got to get it right.
Dini would get it right.
We owe her.
We want what she wants.
We want…to get it right.

It’s planting time.
Ryan and Nathan, Jordie and Nick…they’re young.
We will nurture them, we will love them, and when they grow some weeds…
We will love them even more, and tend to their needs.
Only then, will they grow big, and they will grow wise, and they will be strong.

Dini, in her painstaking absence, reminded me of all that today.
She touched each of these kids’ souls.
She fertilized their individual beings.

They are blessed.
And they will do well.

As for me…
Dini, even though she is gone from my day to day life...
She continues to bless me with her wisdom.
I am, she tells me, a good Mom.
I can, she tells me, make a difference in her son’s lives.
She does, she tells me…still love me.

Happy Mother’s Day Dini…we all miss you so much!

Today we celebrate, in honor of you, Dini...
Our Mother, our wife, our friend.

Cantik Remembered

Tomorrow would have been Dini’s 38th birthday.

“Cantik” is an Indonesian word meaning “Beautiful One”.
Dini was so beautiful.

She was also one of the kindest people I’ve ever known.
Dini never met a stranger, only a new friend.
I hope she’s with friends tonight.

Dini loved to laugh and I’d get such a kick out of hearing her.
She was so tiny, yet she could laugh so big.
I hope she’s laughing tonight.

Dini loved music and cuttin up the dance floor.
She could entice even the non-dancers to “bust a move”.
I hope she’s dancing tonight.

Dini was a connoisseur of fine food.
And she was a terrific cook.
I hope she’s chowing down tonight.

Dini was our Karaoke Queen.
Her angelic voice would leave us speechless.
I hope she’s singing tonight.

Dini’s incredible smile lit up the room.
And it lives on; on the faces of her beautiful boys.
I hope she’s smiling tonight.

Dini has left behind a huge void in our lives.
We love her and we miss her every day.
I hope she knows that…
Tonight.

God's Will

“Life’s not fair…”
We all know that.
Hell, my kids know that.

“God doesn’t give us more than we can handle.”
Yep…we’ve all heard that one too.
And its catchy little reply…
“I just wish he didn’t have so much confidence in me!”
Har, har, har!

“Life goes on.”
Now surely it must have been a rocket scientist who coined that phrase.
Duh!

“It’s God’s will.”

Whoaaaaa!
Hold the phone!
Katy bar the door!

Dini died Monday.
TC was admitted to KU Med on Wednesday.
My dog Ziggy of 14 years should really be put down, she has advanced hip dysplasia.
But I can’t do it… not now.

God’s Will?
Do me a favor.
Don’t mention that one to me this week.
Not yet.
Maybe never.

Memorial Service for Dini

Tonight, we celebrate Dini’s life and thank her for all the riches she added to ours.

Brent would encourage all who knew Dini to attend and perhaps share with us what Dini meant to you and how she affected your life. He also asks that if anyone wants to bring photos, mementos, etc. to put on display to share with others, please do so. The family will have some there as well.

This celebration will take place this evening, July 19th 2006, at Mount Moriah Funeral Home, (10507 Holmes Road, Kansas City, Mo.) from 6:00PM until 8:00PM, and is much less formal than Monday’s services giving everyone the opportunity to visit and share memories.

As he did on Monday, Brent will again welcome friends into his home after tonight’s memorial. Brent’s home is located at 9114 W. 132nd Street, Overland Park, KS.

We have composed a DVD full of beautiful and vibrant photos of Dini that we will be showing tonight. Please note that five of the songs accompanying the photos are Dini herself singing and were recorded at the Hard Rock in Bali. She was our Karaoke Queen and we are blessed that she left us one final gift, her beautiful voice set to songs she loved.

One More for the Road

I had to get up and out early this morning.
Jordie had volleyball camp,
I had a long scheduled Doctor’s appointment.
It’s true what they say…
Life goes on.

For some of us… at least for a while,
It will continue on in a fog.

I was driving down State Line Rd when I came upon a Starbucks.
When Dini and I lived in Houston last year,
We were “frequent” visitors (daily in fact), to our local franchise.
Mike called us “Starbucks Junkies”!
He and Brent used to lament over the financial hit they were taking.
(They have no idea!!!)

My truck turned into the parking lot almost as if on auto pilot.
I sauntered up to the counter and ordered a Café Latte, Grande.
When they asked me my name…
I said “Dini”.

So here’s one more for the road, girl!
I believe that heaven is filled with all the things that make us happy.
Including Starbucks!

Dear friends of Dini,

I am both heartbroken and devastated to share with you the news that our beloved Dini has passed away.

Brent, along with Dini’s mom (Uty), was with Dini as she peacefully and quietly slipped away at 4:45AM July 17, 2006. Sadly, she had never been able to return home from the hospital, but they were able to control the pain in her final days.

At the hospital, Dini was surrounded by incredible amounts of love given to her by Brent and the boys, Uty, Brent’s devoted family who loved Dini as one of their own, and countless friends who kept a vigil by her side.

Brent is looking forward to, in the coming days, writing to you in his own words how grateful he is for the countless letters and emails to Dini in her final days.Many of you also took the time to write to Ryan and Nathan, these letters are particularly touching and we look forward to receiving more.

As far as services for Dini, she will be laid to rest in a traditional Muslim ceremony, followed a few days later with a memorial service/visitation. Details are not yet confirmed; as soon as I do have that information I will again send out an email as well as post it to the blog, www.WeLoveDini.com

Again, it is with a very heavy heart that I share this news with you. I do rejoice however, that Dini is no longer in pain or is suffering.

Chris Baker
Chris@ChrissyCan.com

We Love Dini

Many of you feel as though you know my friend Dini through my blog,
Some of you have actually met Dini.
I am so glad for that.
I wish all of you could know Dini the way I do.
She is infectious!

Now, in a small way, you can.
We have set up a webpage.
It’s called http://www.welovedini.com/

How it began was I sent out the following email:
This thing has taken on a life of it’s own in 12 (long) hours.


Dear friends of Dini,

My name is Chris Baker. I am a close friend of Dini’s as well as her neighbor here in Overland Park. My husband Mike used to work with Brent at Black & Veatch. Our families spent a year together living in Texas where Mike and Brent were working at the time. Dini and I became very close as we spent a lot of quality time together with our kids.

It is with a very heavy heart that I am writing this letter. This past weekend, it was made clear to us that Dini is losing her battle against this horrendously cruel disease. Dini herself has now been made aware of the situation and is slowly, yet bravely absorbing the enormity of it. Her mother was also told the news recently and even though there is a language barrier between us, it is clear that just like love, pain too is a universal language. Her heart is clearly broken.

Brent has had a very difficult conversation with the boys regarding Dini. Ryan wanted to know when she was going to come home and won’t be sick anymore. Brent knew it was time to tell them the reality of the situation; there are no words that I can write here that would do any justice to that moment they shared. All I can tell those of you who live so far away and have to rely on those of us who are close by is that those boys, Ryan and Nathan are surrounded by love. Dini has so many friends, as does Brent who have literally put portions of their own lives on hold to help tend to Dini. Loving her children has been a collective and joyous privilege.

Brent has been a rock all along. I’m sure he won’t approve of me saying this but the rock is showing signs of fatigue. He will no doubt see Dini and the boys through this, that’s what he does. But he does need us and will continue to do so for quite a long time.

For right now though, there is something Brent has asked that “we” do for Dini and the boys. He has asked that each of us write Dini a letter and share some of your favorite memories of time spent with her. We need some uplifting, silly stories included in these letters. As usual, she does not want to talk or focus on the negative, but only on the positive. Our intent is to read them to Dini as she’s resting in bed. She still loves to smile, and we have an opportunity to put many more smiles on her face with these great stories. We also would like to ask if you could include a letter to Ryan and Nathan telling them about their mother. We will save these, actually we’d like to print them and put them into book format so they always have them to look back on. Ryan made the comment the other day that he doesn’t remember his Mom when she wasn’t sick. These stories will bring those memories back to life for all of them.

If you would address your emails to Brent at BurgerBB@bv.com AND copy them to my email address at Chris@Chrissycan.com I will post them to a website (blog) I set up so that we can all reminisce and enjoy our memories with Dini. That site can now be accessed at http://www.welovedini.blogspot.com/

Please find time to make this a priority. Dini really needs us right now. Thank you so, so much.

Chris Baker
Chris@Chrissycan.com

The Sound of Silence

For several days now,
I’ve attempted to blog.
I have opened and subsequently closed countless word docs.
The words just won’t come.

And when they finally do…
I’m scared of what they’ll say.

I am grateful for the silence right now.
It means we are all safe.
We’ve not yet taken that next step.

I am so afraid to break the silence.

UNCLE!!!

Uncle, Basta, Fins…
It all meant the same thing when we were kid’s rough housing.
It meant “Enough, stop, I can’t take it anymore”.

So hear me loud and hear me clear…
UNCLE!
Uncle, uncle, uncle, uncle, uncle!!!

TC and Dini have ports in their chest.
They have IV tubes putting medicine in their bodies,
And drainage tubes taking things out.

They are scanned, they are poked, they are prodded and they are X-rayed.
They are cut open and sewn shut.
They are chemically poisoned every week.
They wait for Doctors and they wait on line at the pharmacy.
They are on hold with the insurance company, just to be told they’re not eligible to have a test their Doctors say they absolutely need.
And all the while, they feel like crap.

Today, as an added bonus, TC got to have two teethe pulled.
TWO TEETHE PULLED!

UNCLE
BASTA
FINS
ENOUGH!!!

A Little Help for Our Friend

Our Dini is very sick.
She’s in terrible pain.
Pain that I pray none of you ever have or even witness.

Dini has been in the hospital for over a week now.
She is so thin and weak; we don’t know when she can come home.

Her support team is tired too.
They are also scared.

I ask that you pray for them…Dini’s keepers.
They too need strength, courage, wisdom and love.
Just like Dini…they need us.

Please take a moment…right now,
And send your good wishes their way.
Thank you.

Cantik

“Cantik” is an Indonesian word which means “Beautiful One”.
Dini is my Indonesian friend and she is beautiful.

She is also very sick.
She too has cancer.
There’s a lot of that going around it seems.

Dini is beautiful in many ways.
She is picture perfect on the outside…
But it’s her heart that truly captivates you.
It must be huge inside her tiny little being.
She has endless love for Ryan and Nathan…her little boys whom she adores.
Brent too…her behemoth of a husband, the love of her life, her rock.

We all love Dini,
And her pain is killing us.
We want so badly to help and we don’t know what to do.
So we pray for her, and now I’m asking you to pray too.

If you have ever met Dini, even once…
You too would think… “Cantik”…
In every sense of the word.

You can check out anytime you want…

But you can never leave. (The Eagles, Hotel California)

That’s what cancer is like.
You can manage to not think about it for a little while, (check out),
But it never goes completely away.

You go to bed thinking about it,
You wake up thinking about it.
You think about it when you drive.

My friend Dini was diagnosed with liver cancer last week.
We are devastated yet hopeful.
Dini has youth, health and a positive spirit on her side.
And us.

Please keep Dini in your prayers along with TC.

Be Happy, Grateful and Kind

My friend Dini is going to have a rough day today.
So will her husband Brent.
Dini is having an incredibly invasive surgery,
Brent will spend 10 grueling hours waiting for her.

My day looks to be pretty non-eventful.
Work the bookfair for a few hours at Jordan’s school,
Make an appearance at “Grandparents Night” at Nick’s.
Pretty ordinary stuff.

Brent and Dini’s will be anything but.
So if you’re reading this today,
Please take a moment and say a prayer for my friend.
And to honor her… be happy and grateful and kind.

That’s what Dini is.
Happy…you should hear her belly-laugh.
Grateful…for her family and friends.
And kind…to everyone she meets.

Today…I will try to be all those things.
For Dini, and for myself.
She would like that.