–by Mary Helen Darah
PUBLICATION DATE: 01.17.17
I am a breast cancer survivor. I beat the disease symbolized by the familiar pink ribbon that’s placed on everything from laundry detergent to frozen burritos. I was having a celebratory moment looking back through my Facebook memories of how I kicked cancer to the curb when Kevin Liber had to go and ruin it. His post on social media stated, “Today I watched my college girlfriend take her last breath.” He was referring to his wife, Faylayn, who had her first mastectomy 20 years ago. She lived 15 years disease-free following aggressive chemo, radiation and a peripheral stem cell treatment. In 2013 she received the news that she had Stage 4 metastatic breast cancer (MBC), that comes with a median three-year survival rate. Faylayn became a member of what I refer to as the “Forgotten Fours.”
The Lost Survivors
To be brutally honest, the “Forgotten Fours” make me uncomfortable. They are a glaring reminder that the disease that I “conquered” isn’t so pretty, pink and innocent after all. Many women with MBC have expressed feelings of isolation. It’s as though they are stranded on the ‘Island of Forgotten Toys’ with little hope that Rudolph the Red-Nosed Reindeer will be coming to save them. They feel misunderstood in a swirl of misconceptions.
A bit of clarity
I have “Forgotten Fours” in my life. Some are still courageously dealing with the daily struggle of staying on this side of the grass and others left us far too soon. I will never pretend that I am worthy to speak for them but I will share a few of their insights and some gentle suggestions.
• Many with MBC feel judged for the disease returning or progressing because of poor lifestyle choices or treatment options. As the proverbial “good girl” who never picked up a cigarette or smoked anything funky for that matter, I can relate and tell you that the Stage 4 MBC survivor that has lung cancer, could have been a marathon running, non-drinker as my friend Liz was. Sometimes it’s just bad genetics and biology.
• Do not ask them when they will complete treatment or when life will go back to “normal.” As one woman with MBC told me, “My treatment ends when I do.”
• Refrain from telling them to stay strong and be positive. The men and women who live with MBC have enough inner strength to bench press a Buick. Unfortunately, strength and positive thinking are not always enough to keep them alive.
• Talk about the pink elephant in the room. See and hear the men and women with MBC. Many have expressed feeling as though they are the invisible subculture behind the pink ribbon. Give them a voice.
• All funds to find cures and new treatments are so greatly appreciated. However, statistically research funds go toward prevention and early detection. Often grant-givers like to see quick success that will help obtain future funding. Mets research is far more complex with uncertain outcomes. Give anyway.
• Above all, remember that not everyone survives breast cancer. I have been guilty of being the cute “poster girl” of pink. Although I love to float in the sea of denial, it is important to remember that breast cancer is a scary disease that is taking vibrant, loving people away from us in alarming rates.
I have to thank Kevin Liber for reminding me of the “Forgotten Fours” and I will do my best that his beloved Faylayn will never be forgotten. I will remember her along with Liz Ham, Helen Scheib, Mary Chris Skeldon, Gretchen Gotthart Skeldon, Jackie Darah, Nora Light, Kelli Andres and the other brave men and women with MBC whose courage knows no bounds.
I heard it once said that faith is 24 hours of doubt pierced with a minute of hope.
The clock is ticking.