Humans are big on remembering important dates. Ask any American the significance of the 4th of July, 9/11, or December 25th. I personally add one more to that list: April 8, 2011. That’s the day I learned I had breast cancer. And by virtue of the all-powerful medical gods, it’s also the day I technically became a survivor.
At first, I found the term survivor rather distasteful. As cancer patients, we “fight” our disease with the goal of “beating” it. Think in terms of General George Patton fighting the Nazis, or Coach Vince Lombardi urging on his Green Bay Packers to beat the Chicago Bears. A suggestion, to either of these men, of simply “surviving” their battles would have probably landed you on your backside.
So it was with me. I fought cancer; I beat cancer; therefore, I was a cancer winner. Swimming up the semantic stream was more than one woman could manage, however. Consequently, I have adopted the title of survivor, but always mumble under my breath, “I’m a winner, too.” It seems terminology, however, is only one of the confusing issues swirling around in the gray waters of survivorship.
According to the most recent American Cancer Society statistics, there are 13,683,850 survivors in this country.1 That’s more people than live in Belgium or Sweden or Israel. And while we all survived one disease, our survivorship (and all of its ensuing issues) is nearly as individualized as we are. Our challenges are real, chronic, and sometimes downright debilitating.
Please understand, had I known on April 8, 2011, what I know now, I would not have changed my treatment a lick. In fact, when I quizzed my doctor as to why I hadn’t been better prepared for survivorship—its joint pain, fatigue, and a sack full of other issues—she replied, “We were busy saving your life.” No argument there. But a great need for more communication between the medical community and my fellow survivors exists. In the spirit of being helpful to both sides, then, I present the Four Seasons of Survivorship.
Our seasonal calendar begins in autumn. It is the time that earth’s living things begin to either fade away or prepare for what will come next. So it is with a cancer patient. From the moment of diagnosis, a cancer patient is thrown face to face with his or her own mortality. A terminal disease is attacking the body, chewing away at tissues and organs like biological Pac Men. The word dying floats through the mind with annoying frequency, just as dry leaves float through each passing October day.
Then as the shock of diagnosis subsides, treatment begins and the mind is barraged with new worries. She lost her hair. Will I? He was nauseous after every infusion. Will that be me? Her scar never healed properly. Will mine? In reality, there are only two certainties in the cancer treatment arena: (1) it will happen, just as certainly as the autumn chill urges squirrels to save food for the winter ahead; and (2) when this season ends, the cancer patient will be forever changed.
Susan Hong, MD, MPH, director of the Breast Cancer Survivorship Program and an associate professor of medicine, both at the University of Chicago Medicine, sees many of her patients finding a new life mission as a result of their diagnosis. Others do not fare as well in the struggle to figure out who they now are. Once treatment ends, Hong says, their lives follow a plot line similar to the movie Big. They wake up one morning completely different, living in someone else’s body. And the long winter begins.
The skies are leaden with storm clouds. The snow is falling, sometimes as gentle flakes, other times with blinding fierceness. The dark days of early survivorship take on similar characteristics. One morning, a survivor feels nearly normal. Other mornings, the survivor wanders through myriad challenges, physical or psychosocial, as if he or she were walking alone in a blizzard. Treatment, physically difficult as it might have been, was at least structured. But when treatment ends, the survivor feels lost and in free fall.
Jeanne Carter, PhD, head of Female Sexual Medicine and Women’s Health at Memorial Sloane Kettering Cancer Center (MSKCC), often hears from her patients that cancer treatment was easy compared with survivorship. “Making sense of where your body is and emotionally processing what you’ve been through is the really hard part,” explains Carter.
The neuro/muscular/skeletal issues are also extremely unnerving. Survivors speak of breathless moments when they wonder if their Where’s Waldo of pain sites are actually a disease recurrence. Physicians such as Michael Stubblefield, MD, a cancer rehabilitation physician at MSKCC, come on board to address the physical issues. Stubblefield focuses on restoring function, reducing pain, and improving mobility and quality of life for his patients. This work is vital to survivorship.
And then there’s the “between the ears” stuff: fatigue, fuzzy thinking, memory loss, and fear. Big fear. Are these conditions normal? Am I alone in feeling this way? Will my cancer return? Judith Abramson, MD, Assistant Professor in Medicine-Hematology/Oncology at Northwestern University Feinberg School of Medicine, speaks of her patients being afraid that these new cognitive issues will forever be a part of their lives. She tells her patients, “Survivorship is a time to put it all together and come up with a life plan.” That life plan is the spring of survivorship.
The snow melts. Green sprouts raise their heads from the earth. Buds become blossoms. Survivors bloom in the spring of their survivorship as well, adjusting to their new normal. They are not who they were, but that does not mean that being someone or something else is bad. It might even foretell of a better life.
The physical and cognitive issues that were frightening in winter have become more familiar. They may not have lessened, but with enough research and questioning, they no longer elicit feelings of impending doom. They encourage us to listen to our bodies, to treat ourselves with more kindness. Extra pounds, wrinkles, or an uncooperative coif are truly welcome reminders of a returning appetite, days full of smiles, and a regrowth of hair.
When Rush University Medical College assistant professor Janine Gauthier, PhD, hears her patients say, “I want to be who I was before,” she reminds them that that is not possible. Instead, she reframes their statement, telling them, “The real questions are, ‘Who do I want to be moving forward? How can I take charge of my life?’ Then capitalize on what you have.”
Diane Von Ah, PhD, RN, is an assistant professor at Indiana University School of Nursing. While much research has focused on cancer cures, her research focuses on quality of life after cancer. “Follow-up has just begun to be looked at in the last years,” she says. “What can we offer patients? The after effect research is ongoing. And while we don’t totally understand all the issues survivors face, we’re allowing patients to tell us what’s happening to them.” Summer is on the horizon.