Documentary project on the BRCA gene

Outlived Outraged Outspoken: One Woman's Mission to Save Her Family from Nancy Bellen on Vimeo.

Outlived, Outraged, Outspoken: One Woman's Mission To Save Her Family

I met Christine Benjamin in October on an Amazon Heart Thunder Ride. She is the first woman in her family to survive premenopausal cancer in 70 years. Some of the members in Christine's family carry the BRCA gene, the gene linked to hereditary breast and ovarian cancer. Christine is on a mission to save the next generation of her family with education and genetic testing.

We started the one year journey of documenting that story in December 09.The passing of the genetic anti- discrimination law in November 09 makes Christine's story even more timely.

October again?

October, the month of all months. The month when the media turns up to ask, "What do you think about breast cancer?" My standard response has always been, "What can we do?"

It is a much better question don’t you think? 

I was pleased when The Breast Cancer Fund asked me to launch their Take Action campaign for October. 

Hello from down under!

Mary Onyango, Executive Director, Kenya Breast Health Programme

I just finished up my week at the UICC 15th Reach to Recovery Conference in Brisbane, Australia. The whole conference was pretty terrific, 600 delegates from 331 organizations and 104 countries. The best part for me was getting to have conversations with women representing the developing countries.

I met a terrific friend from the Kenya Breast Health Programme in Kenya, Mary Onyongo, is the executive director. In addition to sharing with us that poverty and shame are the biggest obstacles in the way of treating or even identifying breast cancer in her country, Mary has a wicked funny sense of humor and I enjoyed her immensely. Did I mention Mary wants Amazon Heart to bring ours bike to Kenya and ride. When I suggested we might also help by building something, she said it was more important for the women to see us on our bikes and to bring them out of their homes, and hopefully face the shame .

Aliza Dolev, The Head of Rehabilitation and Welfare, Israel

Another great pal was Aliza Dolev. Aliza served 20 years as a psychologist in the Israeli Army specialising in Post Traumatic Stress Disorder before leaving to work in the world of cancer.

Aliza developed a program for young women diagnosed with cancer, between the ages of 19-35, who fall between the chairs (cracks). They send the young women into the desert in jeeps- sound familiar? Also they have a program once a year where the young women are sent out in groups to navigate together for a week sailing. This is to help them realize that they can do for themselves.

Aliza has offered for Tim, Wy and I come and stay with her family next summer, sounds good!

29 Malaysian survivors, their surgeon, and one husband!

This group was one of my favorites. They are all survivors of breast cancer, and delighted for their camaraderie. They assured me that just their group was enough to keep their beloved surgeon in business and that he did not have to practice with any others. Also that the dirty jokes kept them happy. They dragged one husband along for the trip this year but were hoping to bring others along to the next conference!

These are just 3 of the many, many stories from new friends I met, I was treated to such a rich exchange with this week. Now off to lay low a few days with old friends before we meet our bikes and more new friends for phase to of this great Aussie adventure.

Oh ya, and as for how my speaking went. It went well- with 6 or so of my American pals in the audience for added confidence.

* I was asked to contribute my thoughts on the conference to Bloom, Reach to Recovery International's October Issue.

Marcia L. Anderson Breast Care Education Fund

Can I tell you a story about my friend Marcia?

Paul and Nancy Anderson lost their sister Marcia 10 years ago. After Marcia passed, Paul and Nancy set up an education fund in her name. Marcia was a social worker and a nurse, and the fund allowed Marcia's siblings to continue to build awareness and support for breast health in Sonoma County.  

Paul and I spoke in January, as we do nearly every year, and I shared with him about my current advocacy shenanigans. I asked after Marcia's Fund and if it could perhaps support some of the national/international speaking I am planning to pursue this year. He told me to write it up and present it....

I remember talking on the phone one day with Marcia. I was saying that just about everyone in my life was upset with me for one thing or another, and that I had to set about the arduous task of cleaning up the pieces and putting things right. Marcia’s reply was, “Nancy, I can’t imagine anyone ever being mad at you.”  It was such a sweet, warm thing to say and made me feel unconditionally appreciated. I have retold this story many times and received many eye rolls in response. I now realize that the story says more about Marcia’s gentle, unflappable nature than it does about me.  Lets face it: everyone should have a Marcia in their corner.

After reading my prospectus Paul said, "It would be a pleasure to offer you the grant this year." And you know what? I had that same warm, appreciated feeling all over again. I am beginning to suspect that it is an Anderson trait after all.

Another great pleasure in this story is that the Sutter Santa Rosa Breast Care Center is administering this grant which allows me to continue my long standing relationship with them. 

Breast Care Center

CineNoma -a short night of local short films

Generally I am not wild about planning and executing fundraisers, but I am thrilled about CineNoma, a night of short films made by local filmmakers, and shot in Sonoma County. Collectively, these films have screened in more than 40 film festivals.   

Possibly, I am excited because all of the filmmakers are way talented -- and they happen to be my friends and, in some cases, my family. And well, gosh, one of the films is mine.

(artwork is temporary and incomplete; tentative date 7/18 location as yet to be determined)

Stay tuned once the details to get ironed out. Join us see some great flics, meet the filmmakers, buy some Binski's homemade pies and support a great cause.

The beneficiary is Amazon Heart Thunder, which donates to the Young Survival Coalition in the US,  youngsurvival.org.

hey mommy did you make a Wish?

Revvving Up!

 
Okay, many of you know I have been an advocate for women with cancer for some 12-odd years now. And yes I suppose the right word is odd.  The list is long and varied, some activities have been a bit scholarly, others a physical challenge, some requiring civic skills, but the most fun by far has been Amazon Heart Thunder. A few blog entries down, Kathy La Tour and CURE Magazine does a great job explaining just exactly what Amazon Heart Thunder is, but here's my version, short hand: Harley Davidson provides breast cancer survivors with brand new bikes to spend 10 days or so tripping down the coast of California or Australia relaying our stories and inspiring simply by being "bodies of evidence" of survival.  

This will be the last year for Amazon Heart Thunder as our intrepid leaders, Megan Dwyer and Mereidith Campbell have new horizons to explore and after 5 years, they are ready to move on. 

So in 2009, I am double dipping : I plan to ride both in OZ (as in Australia) in May, from Brisbane to Sidney, and California in October, from Marina Del Rey to San Francisco.

Amazon Heart Thunder - Breast Cancer Survivors Motorcycle Adventure

An Art Exhibition at Commonweal

Early December - January 2010, artist Lissa Rankin I will be showing in a 2-woman exhibition at Commonweal in Bolinas, California.  I so enjoy working with Lissa as an artist, but I think what will make our exhibition special is that she is an artist and an ob/gyn.  Her perspective as physician witness brings a fresh spark to the genre of cancer/survivor-inspired art.

Jacqueline Mallegni is curating the exhibition. Her take: "This is very exciting. I believe this will be a premier exhibition and the first to occur during a Cancer Help Retreat here at Commonweal."  

www.lissarankin.com

Nancy Bellen Photography

Commonweal - Health & Environmental Research - Cancer Retreats

So the thing about Australia in May...

May 9th I fly to Brisbane and spend the week at

15th International Reach to Recovery Breast Cancer Support Conference. I am looking forward to participating in a conference with a global sensibility. There will be 600 participants from 40 countries. 

Included in my small speaking group alone is a woman from Kenya and several others from Australia. I am interested to learn how our global communities address the issue of women's health. 

I have been working on an new speaking bit- People Like Us: How To Become A Reluctant Iconoclast and Change The World. I am looking forward to trying it out!

And then, well, I'll  join up with 7 of my pals from the US, along with women from 5 other countries, totaling 32 women on motorcycles and 3 support vans.  We'll kick the engines on our Harley's and burn rubber to Sydney. Hee-hee.

Reach to Recovery 2009

CURE MAGAZINE Spring 2009-Warrior Surivivors

Kathy LaTour, Editor-At -Large for Cure Magazine was one of the riders on the '08 Amazon Heart Thunder Ride down the coast of California. What you may ask is Amazon Heart Thunder? I'll let Kathy describe it: 

The Amazon Heart Thunder motorcycle ride in September 2008 brought together 20 breast cancer survivors, including two with metastatic disease, from eight states and the U.K. for a more than 800-mile ride from Los Angeles to San Francisco. The women, diagnosed between the ages of 29 and 53, included experienced riders as well as those who learned to ride for the event. Four participants drove two vans that hauled luggage and provided additional support, such as taking riders to eat in the evening and stopping for emergencies.

CureToday.com: Spring 2009 Article - "Warrior Survivors"

Also check out Kathy's Diary from the ride which can be found only online-

CureToday.com: Spring 2009 Article - "Web Exclusive: An Amazing Journey with Remarkable Women"

*spoiler alert yours truly will be mentioned*

What's in a name?

So what's up with Wild Mercy anyway? I went to hear one of my favorite Authors, Terry Tempest Williams, speak about her new book, Finding Beauty In a Broken World.  

She relayed a story of being at a point of loss in her life and asking for direction, for wild mercy.  I was struck by her language as a prayer and a request. I kinda love it. 

The Mautner Project's BIG LOVE- Valentines Day fundraiser in Washington DC

Tim and I spent Valentine's weekend happily trekking through US History and visiting friends in DC, our spiritual mecca. We're kinda geeky that way. 

More importantly, however, was that we were visiting to celebrate an amazing women's health organization, The Mautner Project, and attend their BIG LOVE 19th Anniversary Gala. 

Fellow pal and Amazon Heart participant Wanda Cockrell is a board member of The Mautner Project and asked us to attend and donate one of my photographs "Offering", to the silent auction. We jumped at the chance. 

The Muntner Project, National Lesbian Health Organization is an on going recipient of grants from The Susan G. Komen Foundation.  Among the many services The Mautner Project provides are support and health resources for women who partner with women and their families newly diagnosed with cancer.

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Mautner Project - Home Page

Hey Wanda - Thanks for inviting us!