Mitigating Surprises: How Conversations with Caregivers Could Empower Young Cancer Patients to Determine their own Fertile Futures

I shouldn't have been surprised when my OB GYN called in the summer of 2013 to let me know that I was "hormonally menopausal." Sitting in a cubicle, facing a desk littered with the day's tasks, my ears filled with blank noise and my eyes wavered. I raced to the bathroom downstairs, locked myself inside, and cried quietly with the phone to my ear, listening but not hearing anything after those two words.

As a healthy, active, twenty–six–year–old woman, I found the words hormonally menopausal to be large, intrusive, and most certainly unwelcome. As a two–time cancer survivor, I found the words to be no different—though they carried plenty of painful half–forgotten baggage to validate their arrival.

I was aware that my fertility had been threatened by the treatments I received as an adolescent for Hodgkin's Lymphoma, but that awareness was based on the consistent use of two terms: potential and infertility. Because it was only a potential, and because infertility was such a general term, I had no concrete understanding of what I might someday face. With every year that went by in remission, and every month that I had a regular period, I was able to dismiss and even deny any fears I might have had about my future fertility. My heart, lungs, and breasts—all threatened by one or more of my treatments—were in good shape, so why not my reproductive system?

When the lump first appeared on my neck at 13, my mother's reassurance, "it's probably nothing", was accepted without question. After having a CAT scan to determine what might be going on, a close friend asked me if I was worried I might have cancer. Walking through the neighborhood, just outside my piano teacher's house with the sun setting ahead of us, I effortlessly brushed off her concern: "no, there's like a one–in–a–billion chance." It's painful to remember those days because it's painful to remember life before the all–encompassing and legitimate fear that would shape my life for years to come.

I was so unconcerned with the possibility of cancer that when I arrived home from school the next day to find my parents home early—something that only meant very, very bad news—I ran from them for fear that a family member or close friend had died. Holding the fresh news of my mortality, my parents had to chase me around our backyard as I screamed and cried that I didn't want to know who it was. When they finally caught me at the brick wall, my mother somehow found the courage to say "it's you" and in a moment, I woke to everything in the world that there was to know and I was drowning in it.

In May of 2001—at the age of 13 and not quite a year after I got my first period—I was diagnosed with Stage IV Hodgkin's Lymphoma. I was an odd case because while my subtype, nodular sclerosis, was the most common and considered the most curable, the cancer did not follow the usual spread pattern: jumping directly from my mediastinum to both of my lungs. I was asymptomatic. We only found the tumor because my clavicle was suddenly protruding, and a large, hard, painless lymph node had popped up on my neck not long after.

Part of how I dealt with and processed the experience was by absorbing and retaining as much information about my cancer as I could. I could still pick every one of my chemo drugs out of a crowd: adriamycin, procarbazine, vincristine, cyclophosphamide, VP–16 … I knew, at all times, what medicines I was receiving and in what doses.

I learned what it was to wait, and treated time at the clinic like a sort of penance. While my mother read, I mostly sat in silence. I practiced the art of endurance, and remained tightly focused on the nearest positive future: when today's...