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Cancer Changes Everything

Catherine Boulay Foundation: The Power of a Word

I would have been very happy being a GYN oncologist. A doctor taking care of patients. Even in an era of snark and dissatisfaction and burnout, there still remains something quite noble in caring for another individual. Taking the skills you’ve learned over a career and applying them: surgery, how and when to operate; medicine, who may respond to aggressive treatment and who is best to palliate; research, curiosity to find the next cutting edge or debunk unsupported standards of care; education, teaching these skills to fellows and residents and medical students while encouraging their understanding of the “why.” After all, isn’t that what doctors are supposed to do?

Then cancer invaded my home and changed everything.

A decade ago, my dad was diagnosed with prostate cancer. I lamented all our uncompleted plans, especially skiing out west. Shortly thereafter, in our mid-40s, my wife was diagnosed with leukemia (CML). At that time, I had limited understanding and expectations of the disease. My uncle, diagnosed with CML a generation prior, had suffered, died and was buried, all within 3 years. His adoptive son, once again fatherless. I expected the same, tacitly strategizing how to bring up our two young daughters, ages 9 and 13, solo. Although I’m a decent dad, I sucked at the things that interested my kids: crafts and Girl Scouts and conversations about boys. Ironically, the man who made a career in treating women knew next to nothing of girls.

I embarked on our family’s cancer journey without effective tools. Hope was casually tossed onto the dung heap with the other frivolities I had in the previously discarded, “living in the now” and deep connection to others. I charged into the fight with my knowledge and intellectualization. My brain, my strongest asset, had generally served me well. I had reams of information at hand: literature searches, colleagues, medical conferences, and experience. Furthermore, the defense mechanisms preventing me from experiencing my patients’ cancers, compartmentalization and intellectualization, helped me get through most of my toughest days. Trouble is, that which I had cherished, my brain and its defenses, could not protect me from life. I needed to go through this journey.

And on this journey, my patients were my guides.

Lesson one: Hope. You cannot move forward without an acceptance, or at least an understanding, that things will somehow work out. Even if, especially if, you cannot understand “why” or have little conception of what the bigger picture is. Hope is a force, an energy, a connection where all things work together for good.

Lesson two: Living in the now. Why spend time ruminating on past mistakes, past failures? They cannot be corrected, but can be learned from. Why spend time worrying what the future will bring? The future will bring what it will, whether or not I chose to worry about it. The present is all that is in our control. We can enjoy a beautiful sunset or share deeply with a friend or laugh at the unexpected.

Lesson three: Feel. Life is to be experienced. Enjoyed. Mourned. Each experience, little or large, is ours to be cherished.

Previously, I guess I understood cancer as an oncologist: I understood its breadth. The manifestation of disease. Now, as a cancer caregiver, I understand its depth. The series of changes in mind, body, and spirit that begin with the words, “I’m so sorry, your biopsy shows that you have cancer.” The complete disruption in life and lifestyle. The disappearance of hope. The isolation. And when my books and knowledge failed me, I had the best teachers that anyone along the cancer journey can ask for. I had my patients. And for them, their kindnesses, their wisdom, and their love, I will be forever grateful. For they saved the life I no longer knew I had. They recognized my hopelessness and delivered me from the abyss. And that is what doctors are supposed to do.

And so for this GYN oncologist, being a GYN oncologist is no longer enough. Although I love, and will always love, the tools of my trade and the intellectual curiosity, understanding and sharing the wisdom of cancer survivorship now seems to be my life’s calling. For this is how we heal. This is how the broken are made whole. Now, surviving cancer is no longer a pipe dream. It is the new reality. Seventy percent of those diagnosed with cancer live over 5 years. Learning how to live well after diagnosis should be our goal. That which we brand as “quality of life” should be a primary goal.

As cancer cure and control continue to rise, narratives of the wisdom of survivorship will multiply. And the stories like my family’s: a middle-aged doc and his well-since-retired, 10-year prostate cancer survivor dad on their multiple skiing trips to Colorado; or a middle-aged doc and his 9-year leukemia survivor wife celebrating the college and medical school graduations of their daughters; or a middle-aged doc celebrating survivorship events with his patients and learning from them how to manage life after cancer, these stories will become the norm. The expected. This is how we rise up. This is how we move ahead. These are the stories of cancer survivorship.

This article was recently published on ASCO Connection.

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