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A Tribute

This is hard to write, because it's not a survivor story. Since I became the Director of SHARE's Metastatic Program last April, five of our hotline volunteers have died: Kristen Martinez, Lilla Romeo, Judy Feder, and Alex Weiler from metastatic breast cancer, and Jean Brase from ovarian cancer. Several women who participated in our support groups have also died. We grieve for them all.

Our hotline volunteers were all special women. You have to be special to turn a devastating diagnosis into a mission to help others as well as yourself. So while we mourn, we also honor Kristen, Lilla, Jean, Judy, and Alex.

Kristen was 31 when she was diagnosed with metastatic disease and lived for five years as a passionate role model and advocate for young metastatic women. Lilla dedicated herself to becoming an advocate, learning the science of breast cancer, testifying at an FDA panel, serving on a Center of Excellence panel for brain metastasis, and writing for the "Mets Matters" blog on this website.

Judy challenged her doctors to find the correct diagnosis and turned her experience into advocacy and support for other women. Alex, who died at age 82, insisted on coming into the SHARE office to answer the hotline and facilitate the Survivors Growing Older support group when she could barely walk. I never met Jean. Theresa Conti, our Ovarian Consultant, describes her as a vivacious woman who loved life, represented SHARE at several health fairs in Long Island, and was always ready to help.

Living with cancer is hard. Living with metastatic or recurrent cancer is harder. But it's easier when you aren't alone. I would like to think that becoming part of a community of women with cancer helped Kristen, Lilla, Jean, Judy, and Alex to live the best lives they could during the all-too-short time they had.  And we are grateful for knowing them and for the help they gave to all the women they met, including us.

 

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Thank you for this loving tribute. As you mentioned, several wonderful women who attended the Queens and Manhattan ovarian cancer support groups have also died recently, and I would like to remember them by name. From the Queens group: Donna Dooley and Judy Biener. From the Manhattan group: Alice Falkenstein, Rose Marie Siringo and Susan Kleckner.

Susan was diagnosed with stage 4 ovarian cancer with pleural effusion in early 2004. Throughout her journey, Susan continued to teach photography, attend group, participate with the SHARE Community Trust survivor presentations and volunteer on the hotline, pulling along her oxygen tank and amazing us with the many things she had overcome.

Susan will always be remembered for her bowling ball story. Shortly after her diagnosis, a man was killed when a bowling ball was dropped out of a window. At that point Susan decided it was useless to worry about "why" because some people got the bowling ball and she got ovarian cancer. She dealt with whatever was thrown her way and didn't let cancer stop her from doing the things she enjoyed, dragging that oxygen tank every step of the way.

As survival rates continue to improve for many, we cannot relax and think that the work is done. We must continue to advocate for and support research for better treatments for recurrent ovarian cancer and metastatic breast cancer, for the Lillas, Kristens, Donnas and Susans who have yet to be diagnosed.

— Annie

 
The following are comments that I delivered at the Moment of Silence that begins the peer review process at the U.S. Department of Defense's Congressionally Directed Medical Research Programs in Breast Cancer on July 28, 2010.

Hello, my name is Madeleine Tress, and I am a Breast Cancer Survivor. But this is not a survivor story.

I’m here today to remember and honor Lilla Romeo.

I first met Lilla about 8 years ago; we were both volunteers on the SHARE Breast Cancer Hotline, went through the National Breast Cancer Coalition’s Project LEAD training together, and were both members of the New York LEADers group. For the entire time I knew her, she was in treatment. But she used her experience to make good connections with everyone involved in breast cancer advocacy, particularly to women who called the SHARE Hotline.

Her advocacy took metastatic disease out of the closet, and Lilla did it graciously.

Many of you may have known Lilla. She was a consumer reviewer for this program in January 2009, served as an ad hoc reviewer for the Breast Cancer Research Program Integration Panel in March 2010, and was working as an advocate participant with the DoD-funded Center of Excellence led by Dr. Patricia Steeg, where she brought the reality of living with brain metastasis to the scientific community. She testified to the FDA’s Oncologic Drugs and Advisory Committee on the dangers of EPO drugs in May 2007, testimony that made it to the front page of The New York Times, The Washington Post, and The Wall Street Journal. She asked a simple question: as a woman living with metastatic disease, did her 200+ EPO treatments fuel her tumor? And rather than alienating the drug companies, she somehow managed to bring the advocacy community to the drug companies, and the scientists in the drug companies to the advocacy community. She was the quintessential advocate.

On a personal level, Lilla taught me never to let cancer define or confine anyone and not to be terrified if confronted with a diagnosis of a new primary, recurrence or metastasis. Regardless of how her disease was progressing, Lilla lived actively and positively, being very open in the past year about both her gamma knife treatment and then enrollment in a PARP inhibitor clinical trial.

Lilla’s last public appearance was chairing a session on PARP Inhibitor Research at the National Breast Cancer Coalition’s Annual Advocacy Conference in May. Her voice was already weak from micrometastasis to her vocal chords, but we were all able to hear her clearly. She died two and a half weeks later, on June 9th.

I miss Lilla terribly, both as a fellow advocate and role model, but most of all as a friend. She continues to inspire my own advocacy.

Despite the losses that sometimes seem too numerous to bear and make me question why I still do this, I look forward to the day when there will be no more Moments of Silence and when these peer review meetings will be a thing of the past.

Let us take a moment of silence to acknowledge Lilla as well as those of us who are still living with breast cancer every single day.

We must get rid of this terrible disease.

Thank you.

— Madeleine Tress

 
How sad that so many die from this disease. I'm so thankful for all those that make thier voices heard so that others can learn.

— Kathy

 
I have been searching for Rose Marie Siringo who graduated from New York City Community College with an AAS degree in Medical Assisting. The last time we were in touch my friend, Rose Marie, lived in Manhattan. Do you have any background on the R M Siringo noted in the comment by Annie?

— Marilyn Vinikoff Bernstein

 
To Marilyn,
Please email Beth Kling, Communications Director, at bkling@sharecancersupport.org, and we'll provide more information about Rose Marie Siringo.

— Beth Kling, Communications Director

 
My name is Maria. I am not a cancer survivor, but the sister of a true warrior, Kristen Martinez. She was, and still is, a great inspiration to many individuals, especially myself.
I have been looking for as many articles about my sister, and the many roles she had in the community.
I would like to just say thank you to all the advocates out there for making their voices heard and raising awareness as my sister did.
thank you

— Maria

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