BloodCounts.com puts a personal touch on life with multiple myeloma
In her battle against multiple myeloma, Kitty Smith found that laughter was the best supplement to her medicine.
“I love that when I’m with you I can laugh about cancer and make fun of it,” she tells her friend and former doctor, Dr. Paul Cheng. “Like, OK, you know, it came uninvited, I didn’t have anything to do with letting this cancer in, but I don’t have to treat it with respect either.”
“It didn’t respect me,” she says, “I don’t respect it.”
Kitty is sharing her story of laughter, inspiration and, yes, disrespect for cancer as part of a new initiative to help patients living with multiple myeloma. BloodCounts.com, a collaboration between StoryCorps and Amgen Oncology, is giving patients a platform to share their value, their stories, and their demand for access to new innovations that will treat this incurable blood cancer.
“Each patient’s journey is different and often includes different approaches over time, but what remains the biggest hurdle is the ever-tightening cycle of success and failure in therapy,” the national campaign explains on its website. “Through real-life accounts of persistence and hope, Blood Counts aims to shed a light on what matters most when it comes to treating blood cancer.”
The initiative, which launched at the 58th American Society of Hematology Annual Meeting & Exposition in San Diego, records and shares first-hand accounts from multiple myeloma patients, caregivers, advocacy groups, physicians and others within the multiple myeloma community. The first stories were recorded at the StoryCorps MobileBooth in the Lexus Premier Lot at Petco Park last December, and they’re already getting attention from within the myeloma community.
“The ‘telling of stories’ goes back thousands of years, and most of us have memories of being told a story and listening with rapt attention. It takes us to another place,” said Susie Novis Durie, president and founder of the International Myeloma Foundation. “The IMF strongly believes that sharing experiences through storytelling is a powerful tool for the multiple myeloma community and applauds Amgen for this campaign to raise awareness of the disease.”
“Our whole life has changed because of being diagnosed with multiple myeloma,” says Michael Tuohy, one of numerous multiple myeloma patients that has shared his story with BloodCounts.com.
Although an incurable blood cancer, patients living with myeloma have benefitted from advancements in treatments — as long as each patient gains access to the treatment right away.
“Over the past decade, we have seen significant advances in treating multiple myeloma, which have made a difference in the lives of those impacted by the disease,” explains Reshma Kewalramani , M.D., vice president and head, U.S. Medical at Amgen . “However, the majority of patients have no knowledge of the disease or available treatments at diagnosis. We hope that by sharing stories and experiences from the community, we can help educate about multiple myeloma and celebrate the progress made, as we move closer to accomplishing our mission of finding a cure.”
Blood Counts says that it will continue to collect stories from multiple myeloma patients throughout the year. Multiple myeloma patients interested in sharing their experiences can sign up at www.BloodCounts.com.
“StoryCorps gives everyday people, including those who are facing serious illness, the opportunity to record meaningful conversations about who they are, what they’ve learned in life, and what matters most to them. We share these stories to build compassion and offer hope to others,” said Braden Lay-Michaels, chief external relations officer at StoryCorps. “We’re pleased to work with Amgen to offer people whose lives have been affected by multiple myeloma the opportunity to record, share, and preserve their personal stories for generations to come.”
Michael and Robin Tuohy
Michael and his wife, Robin, talk about their experiences living with Michael’s diagnosis and treatment for multiple myeloma. Their efforts to seek treatment for Michael evolved into advocacy on a national scale with the International Myeloma Foundation.
Kitty Smith and Dr. Paul Cheng
“I love that when I’m with you I can laugh at cancer.”
Dr. David and Ariel Siegel
“I think you get kind of addicted to that serial intimacy that grows out of this kind of profession.”