Personal Narrative
Dec 2003

I Knew Too Much

Anne Bertkau
Virtual Mentor. 2003;5(12):580-583. doi: 10.1001/virtualmentor.2003.5.12.mhum1-0312.

 

My friend Alex was on the phone. "Sara's in the hospital at NYU. We took her to the ER on Saturday night. They still don't really know what is going on."

"What? What happened?" I asked.

"She started bleeding on Saturday night—bleeding a lot—so she called and we took a cab to the ER."

It was a Wednesday night. I had just seen Sara the Friday before. She had showed me her swollen stomach in the cab between dinner and the bar. She said she had been to her internist, who ran a bunch of tests and was sending her to get a CT Scan on Monday morning. I had no idea what could be causing the swelling. I contented myself with knowing that she was seeing a physician who would take care of her.

Now, all I could think was put your white coat on. I needed to find out her room number. As a second-year student I didn't even know how to go about this. Better to look professional.

When I found her, she and her family had little information, aside from the fact that she had some sort of cancer. Sara told me the whole story: how the resident in the emergency room had had a look of shock and fear on his face when he examined her. How she had been sitting in the hospital for 4 days since then and still nobody would tell her exactly what was happening to her body. She told me that she did not see the doctors very often; and when she did, they just made vague comments and said that they had to wait for the biopsy results. She looked very scared and small.

"What can I do to help?" Sara and her family had questions that I could help answer. I could be more than a friend to Sara. I could be a resourceful second-year medical student. The next morning, I ran around looking up information on various Web sites and reporting back to Sara and her grateful family. "You are going to be such a good doctor," they said each time I returned to their room.

When preliminary biopsy results reported an "undifferentiated" tumor the family asked me, "What does that mean?" This stumped me. What should I say? Should I tell them that lack of differentiation indicates a more aggressive tumor? That it is a "poor prognostic sign"? Before I answered, they asked, "Does it mean that the cells will eventually differentiate?" Relief. A question I could answer, and I did, knowing I was not adding anything to their understanding. Now I had chosen to tell less than the whole truth.

There were more questions with the final pathology report; Sara had an extremely rare untreatable tumor. It was then that it occurred to me to contact my mentor, recognizing that I needed help. It was early afternoon. I hadn't eaten all day, and as I sat in her office explaining what was happening, while both wolfing down a sandwich and fighting back my tears, I came to understand my role better as a professional in this situation. Through this and subsequent conversations, I was able to grasp the extent of Sara's illness, understand my role in her care, and cope with her eventual death.

At the advice of my mentor, I offered to sit in with Sara while she talked with her oncologist to help her make sure she remembered to ask questions and to help her clarify the answers—an idea both Sara and her family liked. Things went well until the oncologist said that the tumor was "not curable" and Sara and her family nodded as if they understood. But I had no idea what not curable signified. I knew she would never be fully rid of the cancer, but could she hold the cancer at bay indefinitely by taking this medication? I quickly followed the oncologist out of the room. I had more questions. I stopped him as he was walked down the hall and showed him an article that the chief medical resident had helped me find. "Is this what I should read?" I asked. He stopped and paused, looking at me standing in my white coat, eyes wide. "Yes, that is the article to read. And you will find out when you read the article that this is a terminal illness your friend has. She will eventually die. You can do what you want, but I would not tell her or show her this article. She will find out for herself in her own time."

So then I knew. I slowly walked back to Sara's room where her family waited. I remember clearly that her brother stopped me outside of her room, "Do you know what not curable means?" he whispered.

I shook my head. "No," I said, "I think you have to ask the doctor."

Later, when Sara's lip began to tremble and her eyes welled at the thought of her treatment, I told her that everything was going to be okay. Her pink sock was poking out from under the hospital blankets, and I rubbed her foot and said that it would be okay when I knew it would not. That night, I couldn't sleep. I kept hearing the words of the oncologist and seeing Sara's face. I knew I did not have enough knowledge of the disease to have a discussion with Sara about her prognosis. But I did know that she was going to die.

I saw her for the last time when she was discharged from the hospital. At first, I called her every other day to check in. Once, I even worked up the courage to let her know that I could listen to her if she did not want to burden her family with her thoughts and fears. She paused, and there was silence on the line, but after a few moments I filled in with more offers of help. In that moment I was more concerned with my ability to handle her confessions than I was for her. Our conversations became shorter and shorter—she became more and more tired and weak, and I had trouble making small talk. There was nothing I could do to make her better. There was nothing anybody could do. I sent her things in the mail--a Valentine's Day package, Sex and the City DVDs—because it was easier than talking.

Over the next month Sara was admitted to other hospitals for additional biopsies and a chest tube placement. Each time my mentor helped me understand the significance of these admissions; her disease was progressing rapidly. But I was still stunned when I received the call that Sara had died. She had decided not to be intubated and said goodbye to her mother and brother, only 5 weeks after her first admission.

I was able to sit down with my mentor soon after her funeral. I wanted to explain how scared I was. My parents were going to die one day. This pain was going to happen all over again. I was having recurrent "day-mares" of my friends or my sister discovering a breast lump. Breast cancer is the most common cancer among women, and if Sara could develop a rare tumor, then my friends and family could easily be stricken with something common. I turned to my mentor again to help me deal with these feelings of helplessness. In her presence I was able to come up with a plan that gave me some direction and focus. I needed to make a contribution in a way that mattered.

I am now in my third year and was able to find a basic science-based breast cancer research project, which gives me a sense of hope. I know I am unlikely to find a cure or make a real difference in the short run. But maybe I can chip away at a problem that matters to me, in honor of Sara and what she taught me about my role as a professional and a friend.

It took me much longer to ask my mentor the harder questions. I wanted to know if I had acted professionally—if I had been compassionate and altruistic and honest enough. Was I a professional in every sense of the word? And most importantly, did I do right by my friend? I had my doubts. She heard me out, urged me to be proud of my own professional development, and encouraged me to have compassion for and understanding of my own limits. This professional development, including a new consciousness of my limits as a health provider was a gift from Sara, given to me when she allowed me the privilege of trying to help her with her illness.

Citation

Virtual Mentor. 2003;5(12):580-583.

DOI

10.1001/virtualmentor.2003.5.12.mhum1-0312.

The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.