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After the fight: Rose Gerber leads a ilfe of advocacy

Published 10/16/2013 12:00 AM

I first met Rose Gerber at a Teddy Bear Tea Party held at the Florence Griswold Museum. We were both mothers of young children from East Lyme, and I liked her immediately for her ready smile and quiet manner that is lit with liveliness.

She was – and is – beautiful, but also radiates a genuine caring stripped of pretensions.

I must have been disarmed, which is why I said something to her I was later amazed I had shared with a stranger. I had received a call that morning informing me I had a spinal cord tumor — a rare condition I had never heard of.

Somehow, Rose understood, and somehow it didn’t cast a pall upon the happy, charming occasion, for which I was always grateful.

We remained friendly, and I remember bumping into her a year or so later, walking up the steep hill at McCook’s Park during a school outing, the sun shining brightly, with Rose confiding in me that she was worried she hadn’t put on sunscreen.

Yet Rose did not tell me what most worried her – that she was battling a rare sub-type of breast cancer. She also didn’t mention she was fighting for her life in a clinical trial or that she was terrified a wind gust would whisk away her wig. All sense of security had been ripped away from her at the age of 39, but she made a resolute decision to keep her fight with cancer to herself – most concerned that her children, Alexander, (then 8, now a sophomore in college), and Isabella, (then 6, now a junior in high school), would be asked if their mother was going to die.

It was a grim question that Rose herself fought to contain.

She sobbed in the shower where no one in her family could hear. Not that her husband, Robert, wasn’t supportive. Described as her rock, Robert was the one who shaved her head so Rose wouldn’t have to go to a local barbershop and risk having her privacy compromised. Yet Rose still wonders about the scare going through his mind, facing the possibility of single fatherhood with two small children.

A decade later, Robert, who works at Pfizer, participated in a 15-mile relay swim across Long Island Sound that raised funds for St. Vincent Medical Center’s cancer patients and celebrated Rose’s 10-year mark as a cancer survivor.

For Rose, the milestone is very significant. Most women celebrate the five-year mark of remission, but Rose’s cancer, which affects only 25 percent of breast cancer patients, relapses later.

At the time, Rose decided to take a risk that she credits with saving her life – she signed up for a clinical trial with the cancer drug Herceptin, a gamble that not only helped her but helped to give researchers information that would be beneficial to the women after her – a fact that pleases Rose immensely.

I’m hard-pressed to recall how I found out Rose was a breast cancer survivor - it wasn’t directly from a conversation with her, but rather seemed to find its way out into the community through her local advocacy work, which is exhaustive and diverse.

Her breast cancer journey itself would require eight treatments of chemotherapy, 33 treatments of radiation, and 52 weeks of Herceptin, as well as multiple surgeries and five years of hormonal therapies.

But another cancer-related journey as a patient advocate is what really helped Rose get through her ordeal.

“I just wanted to be strong for my family,” she said, sitting in her warmly decorated living room. “That’s how I got started in advocacy. I just wanted to move forward. So many cancer patients want to get involved, and they can do small things — it helps you move forward, it gets the focus off yourself, it gets you involved in your sisters’ journey,” said Rose, who recalls how volunteering at the mobile breast screening unit through the Breast Health Action Council gave her perspective.

“I was thinking and learning,” Rose recalls of that time, and how she was surprised to discover the range of ethnic minorities in Norwich, and the ways in which they were underserved in the health care system.

Rose also worked extensively with ECHO (Eastern Connecticut Hematology and Oncology), co-founding its first cancer mentoring program, writing its business plan and developing its training protocol.

Now, Rose is a professional advocate, often choosing not to share her story in her role as communications director and advocate for the Washington, D.C.-based Community Oncology Alliance. She is often in what she calls “business mode” where her own story doesn’t seem necessary to impart, but admits that losing too many friends and associates to breast cancer keeps her in touch with the raw emotions that come with fighting a deadly disease.

“In a weird way it keeps me going. It’s almost a sense of obligation; I feel like I have a voice and I need to use it. It’s not so much about my story, but the ability to tell people, ‘you’re scared, you’re frightened, here’s a resource you can go to.’ I want to use my voice to guide people to resources and to engage them, and I want others to do the same.”

While Rose remains dedicated to Connecticut, having undergone her own treatment at ECHO, The William W. Backus Hospital and Lawrence + Memorial Hospital as well as Yale and Sloan Kettering, she decided to work on a national level, which at times can be hair-raising.

Those times include sitting on a board at the Department of Defense Cancer Funding with doctors, nurses, and scientists. Well-trained in the science, Rose nevertheless still felt awed, only to discover a doctor who was intimidated to be sitting next to a survivor.

Another notable, but highly public moment came when Rose appeared on MSNBC’s show “All In With Chris Hayes” to discuss the effects the sequestration had upon cancer clinics.

Called in the morning by her boss, Rose was approached with the idea. As she hesitated, her boss filled in the silence, “Rose, I think you’ll do great.” He then followed that with: “The show is tonight.”

When afternoon arrived, Rose breathed a sigh of relief – there was no way, living on the shore, she reasoned, that she could make it for the show. Wrong. A call from the producer confirmed a car would come and pick her up, which it did, dropping her off right in front of the studio.

After the show, a nerve-racked Rose remembers attempting to leave while still clutching a prop – a coffee mug, which she was asked to return.

But she had done it. Her untold hours of hospital stays, clinical trial visits and patient advocacy had been distilled into a stint on national television where her passion for patients going through cancer therapy pierced the din of politics.

“My phone was lighting up with texts,” recalled Rose of getting back into the car. The texts were from her children, telling her how proud they were of their mother. “My world was complete. It was one of my happiest moments in the last ten years,” said Rose.