It’s a date! The beginnings of cancer survivorship and its importance today
I’ll bet your calendar is full of significant dates, each with special meanings. From year to year we march through religious observances, patriotic celebrations, birthdays of those we love, and our own (I make sure no one in my family forgets that one!). As survivors, we often add the dates relevant to our cancer experiences, too: the date of our diagnosis, surgeries, or end of treatment. Well, it’s time to haul out your calendars; there are two more dates to add, and they’re responsible for the stellar lives we’ve been gifted.
But first a little back story. I’m a nonfiction writer by profession, a biographer to be precise, requiring a lot of research. As I’m sure it was for each of you, my diagnosis of breast cancer 10 years ago took my breath away. And it halted the writing of my book-in-progress. A mastectomy and 18 rounds of chemo became my focus. When it was all over, I was shocked that the old Judy didn’t jump out of the chemo cake. My joint pain, night sweats, and fatigue were completely unexpected. Suddenly — and alarmingly — I couldn’t concentrate on writing. So I concentrated on researching survivorship.
I discovered sister survivors who were doing amazing work, using their gifts of life and experience to improve the world around them. By helping others, they were healing themselves. That in turn lead me to found a small nonprofit, A 2nd Act, which supports women survivors of all cancers who are giving back to the greater good. And because of A 2nd Act, I met the woman whose story became the inspiration of my next book. Side note: here comes the part where you need your calendars!
Prior to the 1970s, only 40 percent of those diagnosed with cancer survived to the magical 5-year mark. That changed 50 years ago when President Richard Nixon was introduced to a bill making its way through Congress regarding cancer research. Hoping it would help him win the next election, Nixon signed the National Cancer Act on December 23, 1971, the first new date to add to your calendar. It was the same year I graduated from high school, 40 years before cancer became part of my personal story. The act funneled an unprecedented $1.3 billion ($8.4 billion today) into research. Suddenly, the world’s most feared disease was becoming survivable. My treatment, and probably yours, came about as a result of those research dollars.
But survivors’ lives then were very different from ours today. Humans had learned that deadly diseases were always contagious, so cancer was naturally included. Imagine having to hide your diagnosis for fear you could lose your job and your insurance (if you had any). Imagine being served on disposable plates at parties. Imagine your children being shunned by their friends’ parents out of the concern that they, too, carried your cancer germs. Newly discovered treatments were creating greater survivorship numbers, but what was the point of surviving if you were forced to live in the shadows as a social pariah?
Fifteen years later, 23 individuals came together not to cure cancer, but to destroy the myths. All had a connection to the disease, either as survivors, medical personnel, or support group founders, and they would no longer be silent. The woman I met through A 2nd Act was one of those founding members.
They defined survivorship as beginning at diagnosis, as that’s when we begin surviving the disease. And it continues through the balance of life, they said, no matter the length, no matter the re-diagnoses. By the end of that weekend, the National Coalition for Cancer Survivorship was born, along with the survivorship movement. That makes October 26, 1986, the second date to add to your calendar.
The work that NCCS — and all of the fabulous advocacy organizations, like LBBC — has accomplished since its founding has allowed us, the cancer survivors, to come out of the shadows. While it began as a grassroots advocacy group, NCCS has grown to national prominence. Their work changed laws to prevent discrimination because of a cancer history, busting the contagion myth once and for all. Their voices have made certain that survivorship is added to the cancer continuum and that survivors’ ongoing physical and emotional challenges be seen as a chronic condition and covered by insurance. They have also brought the unique physical and emotional challenges of the metastatic cancer community to public consciousness, which in turn further informs the direction of treatment research.
I wrote From Shadows to Life: A Biography of the Cancer Survivorship Movement to bring the work of those intrepid pioneers to light, to give us all new reasons to celebrate our lives. Equally important, I wanted to encourage my fellow survivors to pick up the mantle of the survivorship movement. Those at the beginning launched and nurtured it; those of us diagnosed since have reaped the rewards. The work — and the movement — can only continue with each of us doing what we’re able, no matter the size or scope.
My personal path still amazes me: an author who gets cancer, starts a little organization, meets an amazingly courageous and inspiring woman, and writes our joint history. I plan to celebrate my two new dates this year, and for years to come. I hope you’ll join me!
Judith Pearson is an awarding-winning author and a seasoned presenter. After writing about courageous WWII-era individuals, From Shadows to Life: A Biography of the Cancer Survivorship Movement is her fourth book. She and her husband live at the foot of the Phoenix Mountain Preserve, making one another laugh every day. Learn more about her at judithlpearson.com. And follow her at @JudithPWrites on Instagram and Twitter and Judith Pearson Martens on Facebook.