Discovering empathy in a place called hell

Urology resident, Amy Pearlman, MD, discusses how the experience of helping her mother go through radiation therapy changed how she is able to relate to her patients.

Amy Pearlman, MD

Urology Times

She calls this place “hell,” though I do not understand why. As I walk into the building, I note a friendly staff. In the corner of the waiting room, there is coffee, tea, hot chocolate, even graham crackers. By the chairs, I spot a puzzle that has been partly assembled. My mother calls this place “hell,” but I do not understand why, until I do.

As a physician, I am well aware that cancer affects everyone involved, not just the diagnosed patient. But it took the experiences of going with my mother to get radiation therapy, of sitting with my mother crying, and reflecting on what we were going through to really understand what my patients and their families are experiencing when they go through similar ordeals.

It’s 12:42 pm on Nov. 3, 2016. I am sitting in the waiting room of the radiation oncology department while my mother is getting her second to last radiation treatment, out of 30. Five minutes ago, I made a sick joke. I had the audacity to tell my mother that it looked like she had a binky in her mouth as she put the wax over her teeth and bit down on her mouth guard. I was the only one amused.

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I then watched as she laid on the treatment table in her hospital gown and had a mask placed over her entire head and neck. I watched as she held on to handle bars, as if she were getting ready to get on a roller coaster, which I suppose is not that far from the truth. Like a roller coaster, undergoing radiation has been terrifying for her. Watching her strapped down wearing this Hannibal Lecter look-alike mask is terrifying for me. She puts both thumbs up, indicating she is ready for her treatment. Two thumbs up have never looked so sinister.

Just before her treatment begins, I want to touch her hand so she knows that I am here for her. But the nurse escorts me out and I simply follow her into the waiting room. As I slowly walk out, I feel guilty and sad for not touching my mother’s hand, or her arm, or for failing to say something like, “Mom, I am here.”

Next: "I finally understand why"

My mother says she cried every day after treatment for the first three weeks. As I sit with her in the exam room waiting to meet with her doctor after today’s treatment, both of us crying, I finally understand why. It took watching my mother adorn herself in some sick version of a Halloween costume three days after Halloween before I understood. When I ask her if she ever cried on the treatment table itself, she says, “No. The mask was so tight, it was not even possible.”

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So as I reflect on my mother’s experience for the first time in my life as a trained physician, though now playing the role of a supportive family member, I would like to say the following to her: “I am sorry for minimizing your experience by saying things like, ‘You like fine. Your face is not that red.’ ”

Rather than making jokes, a coping mechanism I often use for myself, I should have simply listened when she said things like, “This is not going to be an easy two to three weeks weeks with radiation wreaking havoc with my body… I suffered last night.” Or I should have responded with, “What a painful and traumatic experience this must be for you.” The latter is the kind of phrase I should also be using with my own patients.

Her surgical scars have healed, like the scars of most of my patients, which are well concealed in the perineum, scrotal raphe, or vaguely seen as six 1-cm lines on the abdomen. It took me playing the role of a family member, rather than physician, and actually watching her experience her treatment, to realize that she is still hurting, as I imagine many of my patients and their families are. It took crying in an exam room, next to my mother, waiting for her doctor, to realize there is nothing minimal about her experience, or the experiences of any of my patients, in this or any other beautiful building, with genuine staff members, refreshments, and partly assembled puzzles.