“One day you’re fine. You’re working and doing your thing, you know? Then you get sick and someone tells you its cancer. It’s shocking! Your whole world turns upside down. Surgery and chemo. Doctors and nurses. I just wanna go back to the way it was before. I just want my old life back.”
Rick Boulay, M.D., is a board-certified gynecologic oncologist. When cancer faced his family and his medical training left him ill-prepared to manage the day-to-day needs of cancer treatment and survivorship, he found wisdom, support and love in the patients he treated. As a result, Dr. Boulay, who is also a singer, now writes and performs on topics at the intersection of cancer and society.
New Normal ( /njuː/ /ˈnɔːm(ə)l/ ): A previously unfamiliar or atypical situation that has become standard, usual, or expected. 1
“I never expected this. This whole cancer thing,” continued Jane toward the latter part of her prechemotherapy visit. “One day you’re fine. You’re working and doing your thing, you know? Then you get sick and someone tells you its cancer. It’s shocking! Your whole world turns upside down. Surgery and chemo. Doctors and nurses. I just wanna go back to the way it was before. I just want my old life back.”
Every other American man, and one in three American women will be diagnosed with cancer during his or her lifetime.2
These statistics give credence to the impression that so many folks seem to carry a cancer diagnosis, especially in the elderly, where cancer is most common. Presently, over 15 million Americans find themselves classified as survivors. 2
Each one shocked, stunned and horrified to be considered amongst the ranks. Each one desirous of returning to a former life and lifestyle.
Cancer, defined biologically as an abnormal proliferation of atypical cells, generally involves less than a percent or two of the total body weight. Yet, this tiny biological intruder soon confronts everything we are and everything we hold dear. Bodily changes from the disease itself and subsequent treatment often affirm the stereotypical images that we associate with a cancer diagnosis: fatigue, baldness, surgical scars, pain, stomas, drainage tubes, nausea, mediports and difficulty getting around. Subtler, yet equally vexing, are the social adaptations to our environment: depression, anxiety, fear, interactions with others, workplace issues and expectations of our future. Additionally, spiritual questioning and bargaining with (and occasionally cursing at) God or other higher powers often occurs as folks wrestle with the meaning of their own existence.
Yet despite these intense challenges, survivors endure and often thrive.
So how can this be? How can you successfully navigate these treacherous times? Cancer survivorship requires transformation of the status quo. Cancer survivorship demands a new lifestyle, a new normal. Fortunately, human beings come preequiped with resiliency and creativity and problem solving skills aiding in the transition to the new normal. In fact, many of the changes occur organically and reflexively, without our specific attention paid to it. Surgical scars fade over time. Drainage tubes, wires and mediports are removed when no longer necessary. Medications control nausea and pain. And hair, almost always, sprouts, though often curlier and wilder than before. Some changes remain long-lasting and require adaptation. Bowels may run while limbs limp. And a glimpse in the mirror may no longer jive with the remembrances of our precancer bodies. Though less visible, the psychosocial and spiritual changes can manifest in profound changes in behavior. Time, our most precious commodity and lamented as it slips away in early survivorship, becomes a gift generously shared with those who need it. The depression and anxiety of “Why me?” gives way to “Why not me?” as we discover that we are no different from others along the cancer journey. We quickly learn to live in the “now” and allow the future to remain out of reach, without the ability to control it. And an apparent vengeful God reveals a merciful side. As my wife, a 10-year leukemia survivor, describes herself, “I’ve become a new and improved version of me.” 3
The difficult but powerful lessons learned along the cancer journey define the wisdom of cancer survivorship. Each teaching, forged in the flame of adversity, challenges our perceptions of our bodies, our resilience, our courage, our universe and ourselves. Under such stressors, we must change. We must adapt. Everything about us is different. And there is no going back to before. Why would
we go back to before, negating these hard earned lessons of survivorship? We’ve established a new normal.
As every survivor experiences cancer and its treatment differently, each transition to the new normal varies. You’d expect those diagnosed with more aggressive cancers and prolonged, toxic treatments to struggle with their new normal. That is often, but not always the case. Likewise, survivors with early stage disease requiring less aggressive interventions may get to their new normal relatively easily. But again, given the profound changes to self identify as a cancer patient, even those with indolent disease may stumble. And although 70 percent of cancer survivors live at least five years after diagnosis2
, some with very advanced or treatment resistant disease tragically do not live long enough to establish a new normal. While others, cured of their disease, live with significant limitations in quality of life. I stand in awe and admiration of those remarkably resilient individuals, who, in the early part of their cancer journey, utter a sentence that begins, “The blessing of my cancer is that…”
Jane’s comment on wishing to return to the life that she knew before cancer is, as you can imagine, quite common in early survivorship. As an oncologist, I never challenge it. It is real and it is honest. But I often return to the concept later on in the cancer journey, after establishment the new normal. Answers to simple questions like, “How’s everything going?” cue me in to the survivor’s adaptation. When patients reveal thoughts that are not focused on the self, symptoms or disease I know there has been growth toward the new normal. Topics of grandchildren, hobbies, and work goals brighten my day. But when I hear of advocacy work or spiritual reckoning or a sentence that begins “I never ever thought I’d do this but…” then my heart leaps. I know that profound inner work has accomplished the new normal.
At this moment, my thoughts on Jane’s comment reflect the beauty of the inner growth along the cancer journey. Cancer and its treatment are beastly. Period. It will strip you bare and leave you quaking. But as you recover, you will see the world anew. Platitudes become truths. Gratitude replaces fear. And although your body mind or spirit will not work as it did prior to your diagnosis, they will be acceptable to you. You will make it so. As for turning the clock backward to the time before the struggle, that will not work. That can not work. For you are no longer the same person. You have been tested and developed the skills of survivorship. You have earned your new normal.
(2) American Cancer Society, Cancer Facts and Figures 2018
(3) Close to Home: Cancer Survivorship PBS13 and Catherine Boulay Foundation produced cancer survivorship documentary, 2016