- A Family Affair
My sister Connie was recently diagnosed with a rare tumor, a myxofibrosarcoma, that had taken up residence near the right brachial plexus. Usually a benign tumor, its location increases the risk of arm dysfunction, recurrence, and metastasis. Her care may be further complicated by the presence of three physicians in her family.
The shiny anticipation of unwrapped gifts had dulled and the last of the raviolis and turkey had been packed away. My sister Connie and I sat on the floor in my parent's family room, as the final game of the night ended. She pulled back her hair and asked, "Is this something I should be worried about?"
The loud chatter of our surrounding family receded and time held its breath with me. A mass. A neck mass. A supraclavicular neck mass.
I exhaled, steadied myself into doctor mode, and palpated the mass. It was defiantly hard and immobile, a mound of silent menace. Very Worried, I thought.
You can't hide your feelings from a sister with whom you shared a room for almost eighteen years and acting casual would be a dead giveaway. I tried anyway.
"Oh, it could be lots of things. I'll call Mary to help set up an appointment." I walked out to find a private place to call my sister, Mary, who had left only moments before.
She is the first person I turn to in crisis large and small. Not only is she an internist, she is the oldest of nine, our Atlas who shoulders the weight of family joys and woes. As always, Mary reassured and managed. An appointment was set up with another doctor for the next day and we agreed to keep the tone positive.
Connie's doctor thought the mass was likely a reactive lymph node due to a draining scalp cyst. Reminded of the importance of doing a full physical exam, I was greatly relieved but surprised how low the anterior cervical chain must go in the neck. I didn't even care that this would further fix my role as the alarmist in the family.
The chuckle in Connie's voice when we spoke told me she was fully aware of the other possibilities. She made an appointment to see Doug, my husband and an ENT surgeon, for removal of the scalp lesion after the course of antibiotics. Problem solved.
With threat of disaster in the rearview mirror, I was puzzled by the somber sound of Doug's voice on the day of my sister's appointment. "It's not adenitis," he said. The biopsy would take a week. I cringed imagining Connie hearing the words "probable malignancy" alone and unprepared. This was the first of many times that I would feel I had failed her, this time for accepting the more benign diagnosis even when it didn't make sense.
Work Life Integration: Family Communication
After her appointment with Doug, Connie asked me when to tell our elderly parents what was going [End Page 14] on. Protecting one of the tribe is well entwined into our family fabric and my instinct was to spare our mom and dad any worry until we had a definite diagnosis and plan.
But what would I say if Connie wasn't my sister? No matter our age, parents are a barrier to our own mortality, the mighty slayers of the monster under the bed. "Tell them when you need to," I said to her. Though well into her eighties, my mother did what every mother does and spread a blanket of protection around her daughter. Mary and I agreed to handle the communication to the rest of the family. Foremost, we wanted to keep the message simple and positive. As a pediatric emergency medicine doctor and a facilitator for workshops in difficult conversations, I thought I was well prepared for the role. I didn't anticipate the challenges of speaking simultaneously as a family member and a doctor in an ongoing conversation.
At first, I played the role of a fortune teller and laid out our best guess of the course of action, which included immediate surgery...