Anne Katz, RN, PhD, FAAN, is a Clinical Nurse Specialist and AASECT-Certified Sexuality Counselor. This post originally appeared on ASCO Connection, August 21, 2015. ASCO Connection.org is the professional networking site for the American Society of Clinical Oncology (ASCO) and the companion website for ASCO’s official member magazine, ASCO Connection.
My patient mix comes in waves—some months it is mostly women with breast cancer struggling with adjuvant endocrine therapy or men in the aftermath of surgery for prostate cancer. These past two months, it has been young adults, and my heart has taken a beating.
There is something quite different from my perspective between talking to a couple who has been together for 30 or more years and hearing the struggles of couples who have been together for 1 or 2 years, or at the most, 8.
For the former couple—their wrinkles appearing in tandem, their relationship comfortable and weathered by common experiences and life challenges faced and overcome—cancer is a shock, certainly, but they have the shared knowledge of each other and the life they have created to cushion the blow.
Younger couples have not yet been tested by the passage of years and often have no mutual language for the vagaries of illness and the potential for death. They are often parenting young children, and while trying to balance the multiple demands of work and home, life seems overwhelming most of the time. They are referred to me or find me because, lo and behold, their sex life has disappeared and they feel disconnected from each other.
While on one level, I relish the professional challenge of counseling a couple who will pose unique circumstances, there are times when I struggle to maintain my composure. These are not men who have seen their erections soften over the past 10 years and now mourn what has been lost and wonder if something can be regained. Neither are these women who have dealt with the physical changes after menopause that have made penetration painful. These are young adults who should be complaining that their sex life is underwhelming because their toddler doesn’t sleep through the night or because the woman is pregnant again and her large abdomen requires some acrobatics to be comfortable or possible.
Instead, I hear about the need to delay taking pain medications so that the man can perhaps get an erection, and as a result, he is so distracted by the pain in his abdomen that his wife gets upset that he appears to not be in the moment. And she feels guilty because she knows that her desire for him is, in part, an attempt to make memories before he is gone. And how—one woman asks me when I see her alone for one session—can she find the desire to be sexual with her husband when his brain cancer has changed his personality so much that he doesn’t act or react like the man she fell in love with and she’s not even sure that she loves him anymore?
As they talk, tears leaking from their eyes and down their cheeks, cheeks that are so smooth now, unchanged by years, I find myself holding my breath so that I don’t cry because that would be unprofessional and, I believe, not helpful to them or me. Their words and the situations they describe cause my chest to ache, and often it feels like there are tiny cracks developing between the muscle fibers in my heart.
I have also started counseling a number of young women who have negotiated and borne the stresses of treatment alone. They come to see me to ask how to talk about their cancer with prospective partners, and when they should disclose their diagnosis, and how should they plan to be naked in front of a stranger with an empty chest wall where their breast used to be. Despite writing two books on the topic—This Should Not Be Happening and Meeting the Need for Psychosocial Care in Young Adults with Cancer—I tell them that there is no right or wrong way. I tell them what I have learned from others like them or from the scant literature. And inside, I rage against a disease that has delayed the living of their lives and the loving that could have and should have been instead of pain and suffering.
And when they leave my office, I close the door and sit in the silence left behind. The pain remains in the air, like the barest hint of perfume after someone has left the room. In that moment, I question if I helped them enough or at all. I allow myself to be angry at what life has thrown at them, and I marvel that despite it all, they still want to try to find love or to make their love better.
Their openness and vulnerability in my presence humbles me, and I am grateful that I chose this work— or it chose me—and that by their repeated visits, perhaps I am helping after all. And in my car going home, I allow myself to cry, silently with no attempt to dry my cheeks. I feel my heart beating in my chest and those tiny fractures caused by their words. In those minutes heading for home, I am reminded of everything in my life that I am so grateful for and I feel comfort.
They say that the microscopic tears in our muscles caused by lifting weights make our muscles stronger and bigger. I certainly hope that applies to our heart muscle too.