This blog post was written by FabOverFifty with support from Incyte Corporation.
While other thirty-something women were marrying, having kids and moving swiftly ahead in their careers, Barbara Abernathy’s life abruptly shattered when she was diagnosed with polycythemia vera (PV), a rare blood cancer, at 32. “The doctor told me, ‘Look, your grandmother was in her 70s when she died of leukemia, and your father was in his 50s when he died of leukemia. You’re in your 30s. You do the math,’” Barbara remembers. That was 22 years ago.
Barbara was all alone when she received the horrific news from her doctor about a disease that was completely unfamiliar to her. To make matters worse, she lived in Florida and her family in Alabama, so she had no support system. But right then and there she thought, “that’s not going to be me, that’s not going to be my story,” she recalled. “I had to dive deep to educate myself so that I could be a good advocate for myself and get the best care. I needed to find doctors who were on the cutting edge of treatment for this disease,” Barbara explained.
Now, Barbara is the subject of “Beyond Blue,” a short and powerful documentary film created to bring attention to a group of rare blood cancers, and to inspire others impacted by them, or any disease, to be their own health advocates.
WHAT ARE MPNs?
PV, which is part of a cluster of rare, chronic, progressive blood cancers called myeloproliferative neoplasms (MPNs), is an overabundance of red blood cells that puts patients at high risk for stroke and blood clots. Symptoms can be quite common, including fatigue, headaches, and dizziness and it’s the most common member of the MPN family, which overall impact over 200,000 people in the United States. Because MPNs are progressive diseases, they slowly get worse over time. “These are chronic diseases, and most patients can live with them a very long time,” Barbara said. Since her early diagnosis (“people usually are diagnosed later in life,” she reported), “we understand so much more about PV, and how to treat the disease.”
Barbara managed the fatigue and pain of PV for almost two decades in part thanks to her indomitable attitude which helped her “power through” her job working with children with cancer, and their families. “Supporting these children and their families brings authenticity to my job, and they inspire me each day to keep going.” Although Barbara felt as if she was “putting on an invisible 80-pound backpack every morning, it wasn’t an option to sit down and stop living,” she emphasized.
Unfortunately, Barbara’s disease “changed lanes” about five years ago, and her fatigue and bone pain became crippling. Barbara eventually developed myelofibrosis, which is scarring of the bone marrow. Following a bone marrow biopsy, the doctors determined it was urgent that Barbara have a bone marrow transplant. Luckily, a 23-year-old donor from Germany provided the rescue cells to save her life, although at one point during the procedure, Barbara wasn’t sure she could go on. Her dear friend, who had remained at her side during the ordeal, consoled Barbara, “Just take one more breath. Just one more breath.”
“FIGHT, MISS BARBARA, FIGHT!”
“On one of the darkest days of my life, the mother of a two-year-old with leukemia sent me a video with a note that read, ‘Miss Barbara, my little girl Vanessa wants to say to you what you always tell her. FIGHT, MISS BARBARA, FIGHT!’ That did it for me,” Barbara said. “I had to be there to help these children to keep fighting. I teach children with cancer how to cope and, in return, they teach me how to live.”
“Beyond Blue,” from Academy Award-winning director Cynthia Wade, in partnership with Incyte Corporation, “is so important because it tells my journey, with the ups and downs, but it ends with a message of hope,” Barbara noted. “Through it all, I learned you don’t have to be defined by your disease. You can live with these rare blood cancers, and keep pushing through them. I’m proud I’m still here and still fighting.
“My story is but one of 200,000 that can be told, but we wanted to start a conversation with other patients to tell their stories, and maybe rare blood cancers don’t have to be so invisible and poorly understood,” Barbara passionately said. MPNs often are difficult to diagnose or can be misdiagnosed, which can greatly impact the lives of patients and their families. Increased awareness, education and support are critically important. MPNs can be diagnosed with a routine blood test and confirmed with a bone marrow biopsy. It’s important for all patients to take an active role in their treatment decisions.
“We don’t want people to be lonely and isolated, or walk through the dark by themselves. Patients living with these diseases struggle to understand the complexity of their situations, and become frustrated and anxious,” Barbara added. “By bringing the subject to the forefront, patients can be better advocates for themselves. And, as the awareness grows, so will the research.” Barbara draws “raw strength” from helping others in her journey, she emphasized.
TIME TO GET THE CONVERSATION STARTED
Barbara’s experience is the first in Cynthia’s series of four films about this group of rare blood cancers, each told with a unique point of view. “My documentaries are always about connecting people to a wider world, and helping them to start dialog between each other,” explained Cynthia.
“Barbara’s story empowers people to think about their own health and their stories of survival, as well as those around them. Barbara sees the richness and beauty in her life every day, and understands her life is filled with unexpected moments of light, of levity and of beauty, even though she’s been living with a rare blood cancer for 22 years. It’s a great reminder for all of us to stop and breathe and recognize the beauty all around us,” Cynthia said.
Besides telling Barbara’s emotional story, Cynthia wanted to make a visual impact. “I decided that Barbara’s theme would be water, since she lives in south Florida and water is very soothing to her. It was important to capture the beauty and the sunlight and the reflections in the water, even in mid-winter when we shot the film,” Cynthia added. “Barbara also wears a lot of blues, turquoises and greens and has many textures in her life, so I wanted to include those visuals, too.”
One of the most memorable scenes in the film takes us with Barbara as she finally gets to do something her disease prevented her from doing for five years: Swim with the manatees in the waters near her Florida home. It will warm your heart to see the unbridled joy on her face. The manatees were happy to see her, too!