The cancer community is not an isolated community. In truth, it is the human community. One in three women and one in two men will be diagnosed with cancer at some point in their lives. Fifteen hundred people will die each day from cancer. The toll this disease takes--not only on people with cancer and survivors, but on their loved ones as well--is almost too great to bear. But through family, friendship, and "community" those of us affected by cancer can transform this burden into a badge of strength.
It was many decades ago when President Richard Nixon launched his war on cancer. But when was the last time you heard about the outcome or were asked to participate?
You are not imagining the silence.
Often we are unsure of what it actually means to be a patient advocate. We are unsure of how exactly we as individuals can affect the outcomes of science or medicine or government.
There are many people in the cancer community who spend their daily lives fighting on behalf of those with cancer. These advocates lobby for increased funding for cancer research, survivorship and support programs. They sit on scientific panels to ensure that the projects being funded will directly impact patients' lives. They ensure that the information about cancer is accurate and up to date. They rally their memberships to apply pressure on government officials to reignite our country's dedication to "the fight against cancer."
But the fire that drives most of these "patient advocates" stems from their own personal experiences with cancer. Most of them are survivors or caregivers themselves. We as individuals must acknowledge that we too can transform our own experiences into a hunger for change.
It starts by becoming our own self-advocates. Often this notion is daunting. But there are many ways to advocate for oneself in the face of this disease.
We have the power in dealing with our own day-to-day healthcare to be proactive with our doctors. To ask questions. To become informed about the treatment options out there and how to demand better ones. To assure ourselves that we know our bodies better than anybody else. But the first steps, while bold, are only steps. As residents, consumers, voters and citizens we can become informed, involved and heard.
The most basic reason for this is very simple: no one can hear a voice that is quiet. We cannot rely on others to do all of our talking for us. If we wish to be heard, we must speak up with a loud and determined voice. We must join with others (advocates, researchers, individuals) to achieve success.
We have power in the marketplace of politics, of commerce, of ideas. We can tell our neighbors what we know. We can write our legislators at every level of government, no matter their party, to notify them about what is important to us. We can send messages to companies who are not manufacturing products with the common good in mind. We can use our voting power, our buying power, our vocal chords and our very existence to push for progress.
Let's make our voices heard! Go to the Get Involved section of our website and follow Senator Specter's instructions to write a letter to your representative demanding increased funding for the NIH. Visit our resources page and become active with a local cancer advocacy or support group.
However you choose to get involved, do something! Add your personal story, your unique message, so that together, as a community, we are poised to share our voice and knowledge in matters impacting people with cancer.
Cancer kills more kids in the US than any other disease. This week SU2C co-producer Katie Couric and the ever-adorable Abigail Breslin were in Philly at the Children's Hospital of Philadelphia filming a segment for the big show. One of the kids they met, ten-year-old Pearce Quesenberry, is coping with a deadly form of brain cancer. She'll appear on the show with Abigail to tell America what it's like to be a kid with this horrible disease.
"People think 'Oh you have cancer it's really bad', but it's really bad. Like all the stuff you have to go through yeah. It's a lot," said Pearce.
She is getting experimental treatment. It's the kind of cutting edge research that Stand Up to Cancer may help pay for.
"Without funding you can't do experiments. Without funding you can't make discoveries. Without discoveries you can't deliver new cures to patients," said Dr. Tom Curran, Cancer Researcher at The Children's Hospital of Philadelphia.
Check out a video of Katie, Abigail and Pearce here.
With your help, SU2C will help create a brighter future for kids like Pearce. Be a part of the effort by donating now and don't forget to tune in on September 5 to find out what Abigail and Katie learned in Philly!
Have you seen the blogger donated video for Stand Up To Cancer yet? Over 30 bloggers and online sites donated photos of themselves holding signs that state why they are standing up to cancer, E.G. For my mom, hope, healthy boobs, whatever their connection to cancer is and why they are tired of this disease affecting their life and taking life. Thus, showing how all of us are affected by cancer. After all, no one is immune to the effects.
Besides the contributed photos, New York singer and songwriter Jennifer O'Connor, donated her song Sister, which is unfortunately based on her own cancer story.
Well, for me, there is an easy answer. I stand up to cancer for not only myself as a young metastatic cancer survivor, but for my peers who are also in the battle of their life, and especially for those who did not survive.
I have been blessed. After being given one year to live, I have passed my "expiration date" and am now heading towards my three year marker of kicking the shit out of cancer so it doesn't have a voice in my body. I have been lucky. Some of my friends have not.
During the past two years, I have unfortunately been a witness to several of my young girlfriends heartbreaking end. Some died slowly. Others... it happened so fast. First, there was Marcela. She died from breast cancer within 10 months after being diagnosed. She was only 31. Then, after a long two-year suffering battle (breast cancer again), Kim died. She was only 34. The most devastating loss for me personally, just because she was one of my best friends, was the loss of Michele. Michele had a nasty battle with leukemia. She fought so long and so hard to stay alive. I was always enamored by her strength (aka: FUCK CANCER attitude), her resilience to keep bouncing back after docs told her she would not, and her deep, unconditional love she expressed for her family and friends. She embodied grace and gratitude. Right up until the very end. She was only 34.
I could go on and on about all the young survivors who lost their precious lives to a cancer diagnosis. It is a shame there are so many to remember. But, I feel it is our job to remember them, all of them, young and old, and honor the lives they once lived by sharing their stories. Hopefully, the more we talk about it, the more lives that can be saved. Word of mouth is very powerful. It is one of the most effective marketing tools. Everyone has a story to tell. It is how we learn. By sharing. So at the end of the day, that person goes home to tell their partner, their spouse, their family and/or friends what they learned as probably the most educational lessons of the day.
Like I said before, I stand up to cancer for myself, for Marcela, Kim and Michele, and for all others who have had to endure the ugliness of this devastating disease. I for one am tired of seeing my friends suffer and die miserable deaths, basically having little quality of life. Examples of low quality of life for us younger patients/survivors are infertility, early menopause, side effects from menopause, scarring from surgeries, being single, no insurance, more aggressive cancers, lower chance of surviving, and, if we do we have many more years, enduring reoccurrences, treatments and side effects. Oops! Did I forget anything?? Where is the quality of life in all that? Well, it is what we make of it. It is our choice to wake up every day after being dealt a "dirty hand" believing that we can prevail and move forward in the most positive light possible. Even though it's normal and oayk to have your moments of "pissed off-ness," sadness, etc., the important thing is to feel it, express it and not deny it and then... GET OVER IT! Hopefully, by taking your mind back to a positive place and living in that every day (GRATITUDE) you will have survived a longer, more rewarding life that others will have been honored to be a part of. This is my wish. For all of us.
Thank you to all of the courageous warriors who have fought this disease and to the co-survivors who have had to put up with us because that, my friends, is one the most challenging jobs/roles.
I would love to know more of your stories if you feel inclined to share and welcome your comments.
Thank you for your valued time reading my blog. It is deeply appreciated.
Patty Franchi Flaherty, a lifetime Massachusetts resident and community pillar of Natick, lost her courageous 9-year battle with ovarian cancer and died peacefully at home on August 18, 2008, surrounded by family and friends.
Patty was a native of Weston who graduated from Bentley College in Waltham. Afterward, she joined Natick-based Franchi Management Company, Inc., where she worked for over 30 years overseeing all business operations alongside her brother Louis Franchi. She was also a long-standing trustee at Boston's Dana-Farber Cancer Institute.
Diagnosed with ovarian cancer in early 1999, Patty lived 9 years before succumbing to the same disease that took her mother Madeline's life 25 years earlier. After a promising remission, the cancer resurfaced in 2005 as a 6-centimeter tumor in Patty's pelvic area. Frustrated by how little ovarian cancer diagnosis and treatment had changed in a quarter-century, Patty was certain that she wasn't alone in her fight with ovarian cancer or in her frustration over medical insufficiencies. She was determined to help improve the odds for all ovarian cancer patients.
In early 2006, Patty co-hosted the Stuart Weitzman Fashion Show and Luncheon as a fundraiser. Proceeds from the show helped fund the Madeline Franchi Ovarian Cancer Research Fund at the Dana-Farber Cancer Institute. Then, with the help and support of her dearest friends, Patty launched a non-profit organization called Ovations for the Cure to fuel other research initiatives around the country and actively change the face of ovarian cancer.
In the 9 years she lived with ovarian cancer, Patty Franchi Flaherty turned a very personal crusade into a meaningful legacy for all women facing the disease. Thanks to Patty, women can now share information the likes of which her mother never had, and have hope where before there had been none. In just over 3 years' time, Patty led Ovations' growth from a lingering idea to a thriving organization--with momentum that continues to build across North America.
In July of 2008, The Savings Bank Life Insurance Company of Massachusetts awarded Patty its highest community honor, the prestigious Brandeis Award, which Patty's husband Paul accepted on her behalf. The award pays homage to Justice Louis Brandeis and his defense of the rights of individuals, and was given to Patty in recognition of her innovation, bravery, and commitment to furthering the research and awareness of ovarian cancer.
Known for her unshakable determination, Patty turned her mission to beat ovarian cancer into a nationwide entity with palpable impact. In so doing, she created a living legacy of hope for everyone who faces the disease. Patty's personal contributions to the fight against ovarian cancer have earned her a champion's status in the hearts of those she has forever touched.
Creating a brighter future
Compared with other diseases making headlines today, ovarian cancer is far from attention-grabbing. Its foremost symptoms are so common and nonspecific that they are often mistaken for something else, if not ignored. Meanwhile, early detection methods are still in their infancy and late-stage diagnosis makes for only a limited number of successfully treated patients. Perhaps most surprisingly, ovarian cancer has the highest mortality rate of all gynecologic cancers, and yet more tax dollars are spent fighting more prevalent diseases with significantly lesser mortality rates.
Contributing to the high mortality rates of ovarian cancer is the lack of accurate screening and clear symptoms. As a result, only 19 percent of cases are detected before the cancer has spread beyond the ovaries, when treatment options are limited.
"Ovarian cancer is often misunderstood, misinterpreted, and unfortunately misdiagnosed," said Dr. Ursula Matulonis, attending physician at Dana-Farber Cancer Institute and Brigham and Women's Hospital and medical advisor to Ovations for the Cure.
"In an effort to overcome this silent killer, Ovations for the Cure is dedicated to supporting cancer research centers to find accurate and early detection screenings. If caught in the early stages of diagnosis, ovarian cancer patients have a 90 percent chance of survival beyond five years and increased odds of beating the disease," Matulonis added.
"Ovations for the Cure has helped change the dynamics of the medical profession by contributing valuable research funds for detection and treatment while educating women on its subtle symptoms."
Today, Ovations continues to help make miracles possible for all women with ovarian cancer by shedding light on a disease that is still full of darkness. They have launched an aggressive ovarian cancer educational program, distributing awareness brochures to more than 3,000 physicians' offices across the nation. Additionally, the development of their television and radio public service announcements outlining ovarian cancer symptoms has helped women identify the disease before it spreads to advanced stages. By spring of 2008, Ovations had already donated nearly one million dollars to ovarian cancer initiatives through Dana-Farber Cancer Institute, Brigham and Women's Hospital, City of Hope Hospital in L.A., and the University of Pennsylvania.
From loss to legacy
"Patty started Ovations for the Cure with the idea of saving women from this horrible disease," said Debbie Soprano, one of Patty's closest friends and first Executive Director of Ovations for the Cure. "While she could not save herself, her everlasting optimism and spirit will forever lead the fight against ovarian cancer until we find a cure."
Patty Franchi Flaherty may have lost her own battle against ovarian cancer, yet through Ovations for the Cure, she'll continue to help thousands of women to win the war.
For more information about ovarian cancer visit www.ovationsforthecure.org.
September is Ovarian Cancer Awareness Month. To learn more, visit ovariancancer.org.
On Tuesday President Obama signed the American Recovery and Reinvestment Act into law. The stimulus package includes $10 billion in funding for the National Institutes of Health, which in turn funds the majority of cancer research in the US.
Thanks to everyone in the SU2C community who took time out of their lives to e-mail their senators about the importance of this funding. Grassroots support makes a big difference in the fight against cancer!
