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Passing the Torch: Reflecting on the Past, Connecting with the Future

October 16, 2010

To members of our community, Passing of the Torch symbolizes the hereditary link between breast and ovarian cancer. For me, the event also holds a deeply personal significance: the fulfillment of a promise to a dying friend. The first Passing of the Torch arose out of my frustration with the lack of public awareness of ovarian cancer amidst a growing awareness of breast cancer. So many people were focused on “Pink October,” but few knew about “Teal September.” Even fewer knew or understood the genetic link between breast and ovarian cancer due to a BRCA mutation. Given the proximity of the two awareness months, it occurred to me that the transition from September to October was a perfect time to pass a symbolic torch from Ovarian Cancer Awareness Month to Breast Cancer Awareness Month. Soon after the concept was conceived, our first Passing of the Torch was scheduled for September 2005.  Linda Pedraza, a volunteer and Board of Directors member in Boston, loved the idea and offered to chair our first event.

Many people know about Linda Pedraza from her story featured in the documentary In the Family.  She survived ovarian cancer only to be diagnosed with aggressive breast cancer. We met at a hereditary cancer conference in Boston a few years earlier when she invited me to be keynote speaker. We became fast friends. When I met Linda, she had just completed her ovarian cancer treatment. She was optimistic and full of life.

Linda had the heart of an advocate. She showed up at every conference to which we were invited, to educate and advocate on behalf of our community. Her thoughtful, articulate, and soft-spoken approach complemented and contrasted with my outspoken and sometimes confrontational style. Often when I felt bad about an exchange with someone who questioned our work or the importance of hereditary cancer, it was Linda who helped me see the big picture. She became an important part of our community and the work that we did, and soon I asked her to join FORCE’s Board of Directors; she readily agreed. She encouraged me, reassured me, advised me. She was the wind in my sails. It was no surprise that Linda and I became very close confidantes. We roomed together at every conference we attended and stayed up late at night catching up and brainstorming about ways to raise needed funds for FORCE, educate people about hereditary cancer, and help people understand the disproportionate cancer burden that our community shoulders.

It was at one of those conferences that Linda asked me what my lymph node felt like when my cancer recurred. She had found an enlarged lymph node in her armpit and planned to have it evaluated when she returned. Linda was concerned. She had previously requested a bilateral mastectomy but her doctors were reluctant to perform it because she was barely  out of ovarian cancer treatment. Not long afterwards, I received the call from Linda: she had stage III breast cancer, a cancer that did not show up on her MRI taken less than a year before. Proactive as usual, Linda researched her options and was soon back on chemotherapy, followed by a double mastectomy. Never missing a beat, as soon as she finished treatment she returned to her advocacy work. We met again at a conference in D.C. soon after. There we began strategizing about organizing Passing of the Torch to raise awareness of the hereditary link between breast and ovarian cancer. Linda wanted our first event to be in Boston, and soon after she got home, she hit the ground running to plan the event. It was a lot of work and she was still recovering from her treatment, but she was committed to making this event happen. She called me three weeks before the event…her cancer was back, now in her brain. I asked her to cancel Passing of the Torch, I wanted her to focus on her own health but Linda insisted that the event must go on. She had lined up her family and support system to help make this happen. She was determined there would be a Passing of the Torch in Boston.

It was a crisp and cool fall night in New England as 150 people showed up to honor Linda, learn about hereditary cancer, and celebrate our event. Two hundred luminaries glowed pink and teal around the park. There wasn’t a dry eye in the crowd as Linda spoke and then passed the ceremonial torch. Her daughter Nicole sang Someone’s Watching Over Me.

So I won’t give up and I won’t break down
sooner than it seems life turns around.
And I will be strong even when it all goes wrong.
When I’m standing in the dark I’ll still believe,
that someone’s watching over me
.

The lyrics were a painful and poignant reminder that Nicole would soon lose her mom. Despite the ever-present sadness about Linda’s recurrence and prognosis, by all measure, we achieved all we had hoped. Linda was content with the event.

Leaving Boston I was emotionally spent and fearful that I would never see my friend again. We had a phone conversation as I shuttled to the airport. I vividly remember the details because of the words Linda spoke and the promise that she asked of me. Linda was very pleased with the event, it had achieved everything she had expected and more. She wanted to assure that Passing of the Torch continued beyond that first year. Her vision was a movement of Passing of the Torch events all over, and a spreading awareness of hereditary breast and ovarian cancer. Her exact words to me were, “Promise me FORCE will have a Passing of the Torch every year.” At that moment, overwhelmed with the effort that this single event took; the magnitude of planning of our first annual conference coming up in four short months; the challenges of running a nonprofit organization on a very limited budget, limited staff, and my limited time; and the impending loss of my dear friend, I wanted to believe we could do it, but I didn’t want to make a promise I couldn’t keep. Rather than assure her that Passing of the Torch would continue, and limited by my own self-doubt, I professed honestly, “Linda, I will try my best.” Her next words inspired me: “Sue, you taught me that one person can make a difference. You taught me that, Sue.” I couldn’t answer. Her words meant so much to me, I was at once uplifted and also overcome with grief. Linda was like that, she always elevated those around her, even when faced with her own serious challenges.

We lost Linda in January, before our first annual conference she had so wanted to attend. Her registration went to someone who couldn’t afford to attend. The many donations in her memory established our Linda Pedraza Memorial Conference Scholarship Fund. That first year we brought 12 people to the conference on scholarship—a number that has grown every year.

Last month, on another cool Fall evening, exactly five years since our inaugural event, I stood on the baseball diamond in D.C. in front of thousands of Washington Nationals fans, surrounded by our many local FORCE volunteers who had worked so tireless to help pass National HBOC week and Previvor day, and who organized this event. I could feel the connection to them, to Linda, and to all members of our community, current, past, and future. I thought about our upcoming Passing of the Torch events in Cincinnati and New Jersey and our growing partnership with sponsors Kaleidoscope of Hope and I began looking ahead to next year. Yes, there would be more events in the future. The announcer mentioned National HBOC Week and Previvor Day. Our week and our day, mentioned and honored in our nation’s capital, with the entire world watching. As the flame was passed, the stadium announcer said the same words I spoke five years earlier at our first event:

May the Passing of the Torch symbolize current and future efforts to grow and spread awareness of ovarian cancer, breast cancer, and the hereditary link between the two diseases. May the fire symbolize our burning commitment to work towards eradicating cancer, and remind us to honor and remember those individuals and families that have been impacted so terribly by cancer.

The words resonated with me: five years later we HAD collectively spread awareness, our commitment to eradicate cancer had not wavered, and we had remembered and honored those touched by cancer. I honored Linda and her request of me. I thought somewhere she was looking down on us and watching. She was smiling. She was proud. I said the words out loud softly that had been a whisper in my mind since coming to D.C. “Linda, this is for you!”

11 Comments

  1. Thank you Linda, Sue and everyone involved with FORCE. You have all meant so much to me. A huge tear just rolled down my face and I am reminded over again that if not for all of you, I would not have had the courage to be as proactive as I am!
    Love and hugs!
    Beth

  2. Lisa Carden says:

    Sue,Linda would be so proud of you. The passing of the torch was an event that was so dear to her heart. I can;t thank you enough for carrying on my sister’s legacy.
    Thank You from the bottom of my heart.
    Love
    Lisa

  3. Ziva says:

    Sue,
    This post is beautiful, powerful, and inspiring…just like both you and Linda P.
    Thank you for all you do and also teaching me that one person, and especially, a few sincere people, can really make a difference. You have saved lives. You have improved lives. You honor lives lost way too soon.
    Love, Ziva

  4. tara n.j. says:

    Beautifully said my dear friend!

  5. Lisa B. says:

    Sue, what a beautiful story. Linda had to be one of the most amazing people on this earth. I thank God for her and you and FORCE. With love, Lisa B.

  6. Sharon Chain says:

    Hi ,I just read the passing of the torch story .I lost my Mother a few yrs ago she had cancer ,But it did not take her life .I love the work all of you are doing to make people aware of all cancers .God Bless all of you keep up the great work

  7. Renee Lessans says:

    Thank you for sharing this story. I found the link through my aunt on Facebook and surprisingly noticed my colleague holding the torch. She would love a copy of the picture. I know it would mean a lot to her. Is there anyway I can get the file so I can print it for her?

  8. Merit says:

    Had I known about my BRCA mutation sooner I would have loved to have been on your team pioneering the legislation. Had you not been working so hard for the recognition, I may not have ever known about the genetic testing or had the opportunity to be a previvor. I thank you from the bottom of my heart. It is now my mission to join your crusade with my full FORCE! Please reach out to me as I am happy to help in any way I can. Thank you.

  9. […] between breast and ovarian cancer; you can read about the origin and significance of the event on my blog post from the 2010 Passing of the Torch in Washington, DC. In Orlando I will attend a screening of In the Family, the poignant and insightful documentary by […]

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