Doctor's Stories: Sarah
When I met Sarah for the first time, I was stunned by her beauty. She was 5 feet 9 inches and lithe, with light brown hair that highlighted hazel eyes and surrounded her perfect face. She was sitting in exam room 3 surrounded by her parents and her husband David. I had never seen any woman, let alone a patient, so lovely. The examination rooms were well lit, if not spacious. This one had a window and that glorious fall afternoon, it allowed the sunlight, like a spotlight, to be focused on Sarah. _________________________________________________________________________________________________________________________________________________________________________
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As I introduced myself, a look around the room told me a lot about the situation. In the room, Sarah’s father and David’s eyes were filled with adoration and fixed on Sarah, ready to fill her every request. On the other hand, Sarah’s mother’s was focused on me and I knew I was being critically evaluated as to whether I could be trusted to treat her daughter. Convincing this woman was not going to be an easy task.
Sarah was a 28-year-old mother of 3: an 18-month-old girl and a set of 6-week-old twin boys. While nursing the twins, she had noted a tender red area above the nipple of her right breast and called her obstetrician. He diagnosed the problem as mastitis and phoned in an order for antibiotics. However, the problem worsened over the next week and she was referred to a surgeon. Ultimately, a biopsy led to the diagnosis of inflammatory breast cancer.
Understanding the Diagnosis
Sarah’s history showed that she never had a significant illness before and a physical examination suggested that there were no other sites of involvement. With her family back in the room, I explained that while I did not believe the cancer had spread, inflammatory breast cancer is an aggressive cancer and Sarah would need an equally aggressive treatment. I suggested laboratory tests and radiologic studies to confirm my findings.
Her father and husband sat quietly, with tears in their eyes, committing to whatever it takes, while her mother angrily stared at me and demanded a second opinion.
Sarah turned to her mother and asked her to wait outside with her dad, saying this was her and David’s decision. When her mom objected, Sarah reiterated that it was her life, and that she was satisfied, and didn’t need a second opinion, “I need your support, but I will be in charge of my life.”
Insight into Sarah
That first visit said a lot about my new patient and her family. Before she was married, Sarah’s father had doted on her. He was her pride and joy, and gave in to her every want or need. When her mom would exert her control, Sarah was seek out her father to get his approval.
Once at college and on her own, Sarah was in control. And when she met David, he replaced her father’s role as the one who gave her everything she asked for. Now, facing cancer, she reverted into the decision-maker mode. This cancer was going to do what she told it to do—or else!
Everything started off as well as it could. Her blood counts and chemistry profile revealed neither a suggestion of metastatic disease nor evidence of any other health issues that would alter her treatment. The radiologic studies were also negative.
Sarah was compliant with my recommendations, but only after asking numerous questions and several negotiations. To me, this meant she was reading all that she could about the disease. Several times she even mentioned that she was committed to this fight for her three children.
When it was time for chemotherapy, Sarah was adamant that we find an alternative treatment that wouldn’t cause hair loss. I had to stand my ground, and even remind her to keep her kids in mind, when insisting that all the best options for her cause alopecia. She did give in.
I can truly say that Sarah was one of the most challenging doctor–patient relationships I can remember. While she respected my recommendations and she was determined to get well, she only wanted to do things on her terms and on her timeline.
In our last review of the risk and benefits of each portion of her treatment, we discussed needing the surgeon to install the Port-A-Cath first, to provide IV access, before the mastectomy and radiation treatment. Sarah insisted on starting that day, not waiting for the IV access, so it didn’t interfere with her sister’s wedding. David wanted to appease Sarah. I had to go through all the reasons why the IV access was the safer way to begin treatment and repeat the severe conse-quences that may occur when we skip this step.
Nothing was going to interfere with Sarah’s day-to-day life, especially this cancer. This was the little girl who virtually had controlled her entire life by smiling and pouting. She had never met a male that she couldn’t wrap around her finger, and now was having a terrible time accepting that she had finally met her match in this illness—and maybe in me.
Don’t get me wrong. Sarah was never nasty and always expressed gratitude for all our efforts. It was just that she tried to manipulate the treatment schedule to fit her life, whether it was to accommodate a family or social event or out-of-town visitors and kid’s activities. Sarah would first argue, when I stood my ground, she would pout, but eventually give in.
The Next Few Months
And so we went on—Sarah determined to get well, and at the same time struggling to continue the life where nothing had been denied her. To my amazement, chemotherapy was completed on schedule and Sarah appeared to be in complete remission. Surgery went as planned and only microscopic cancer was seen in the pathology specimen. She decided against breast re-construction. The 6 weeks of radiation stretched out to 7 due to a severe skin reaction. This healed and in the interval, between the completion of radiation and her next appointment to see me, a full battery of tests revealed that she had no evidence of disease.
Our next visit was once again a family affair. Everybody had big smiles on their faces when I gave them the good news, and I’m not sure they fully understood that no evidence of disease did not equal cure.
Seven months later, Sarah noted a lump in her mastectomy scar. It wasn’t much bigger that a pea. The lump was easily excised; the pathologist confirmed that it was a recurrence. We ran additional tests: A bone scan was abnormal and a few nodules, all <1 cm in diameter, were seen in her left lung.
Over the next 8 or 9 months, Sarah received a variety of treatments. Brief responses were followed by relapse, and finally, we all agreed that this would be our final new treatment. And through this all, Sarah still tried to control the disease to better accommodate her life. By now, I had become an easy mark. I knew the outcome wasn’t going to be affected by a few days, so I acquiesced. _________________________________________________________________________________________________________________________________________________________________________
Doctors' Stories: Last Round
Doctors' Stories: The Other Side
A Turning Point
In early 1999, Sarah turned 29. I suddenly became aware that my own son, Jonathan, was going to turn 29 a few weeks later on May 1, and became sad thinking about how she wouldn’t live a life as full as his.
Then, on April 10, my world collapsed. Jonath passed away from sudden death associated with epilepsy. I took a few days off but I was still carrying around the impact of his death when I came back to work. My staff knew what had happened, but I never talked about Jon to my patients.
Meanwhile, Sarah was no longer responding to treatment. Together, Sarah and David agreed to one last cycle of treatment before considering hospice. Sarah never appeared despondent and instead, continued to talk about getting better. I noticed 2 changes: Instead of challenging me at every decision, she simply said “thank you” and for the first time, she asked how I was doing. Though I said I was okay, I wasn’t. Sarah was my constant reminder that 29 is too young to die. I realized that I had “adopted” her as another of my children—and the thought of losing both Jon and Sarah so close together was pressing in on me.
When Jon passed away, I had started a fund at the Epilepsy Foundation of St. Louis to take underprivileged children to a St. Louis Cardinal baseball game—The Jonathan Levy Memorial Game—each year. I never solicited at work, but people in my office were aware of what I was doing, and so were David and Sarah apparently.
When Sarah came in for her final chemotherapy, she asked the nurses to bring me back to the treatment room. She then reached into her purse and handed me a check, “We heard about what you are doing with the epilepsy people, and Dave and I wanted you to have this.”
Sarah had stunned me once again, this time with a different kind of beauty.
I never saw Sarah again. She passed away in her sleep later that week. About 6 months later, David came by the office and brought me an old, framed, vintage St. Louis Cardinals pennant with a photo of the Cardinal Championship team in a center cutout. He said that he was shopping with Sarah at a flea market last year when they bought it and that Sarah had wanted to give it to him at her next visit. She never made it to that visit but he wanted to make sure I had it.
For doctors, life is a learning experience. It entails learning how to deal with insurance companies and hospital personnel, as well as reading journals and completing CME. But it is so much more—it is about learning from the people who come into your life, especially your patients. You learn to share their joys and pains. You see how lucky you are and how cheated others may be. You are enveloped into a special kind of love when you enter their lives—and when patients, like Sarah, enter yours. I feel blessed to have known her. ■
Morton Levy, MD, is a hematologist-oncologist and writer of narrative medicine in St. Louis, MO.
Rosalind Kaplan, MD, practices general internal medicine in Philadelphia, PA.