My Mother, the Patient

Unfortunately, the more I learned about medicine, the more I realized how slim her chance for survival was.

“This is my daughter who’s graduating from Hopkins,” said my mother. “She’s just been accepted into Temple’s M.D./PhD. Program.” I dutifully shook the surgical oncologist’s hand. His handshake acknowledged and dismissed me simultaneously. I didn’t say much; I didn’t like to draw attention to my ignorance. My mother, who had breast cancer, was getting another round of chemotherapy. She believed that my acceptance letter had bestowed immediate wisdom upon me, even though she was a registered nurse herself and knew enough about medical students to know that wasn’t true.

I was the daughter she had taught to say “micturating” instead of “peeing” when the boys were talking toilet talk. I had read her nursing magazines and listened carefully as she enumerated the technical blunders on soap operas and M*A*S*H. She encouraged me to be a doctor, not a nurse. Always her student, I became talisman and translator in her illness.

“This is my daughter, the medical student.” We were in the radiation oncologist’s office, and he was reviewing the results of a suspicious computed tomography scan. The doctor clipped the film to the light-box and with a wax pencil outlined the crescent-shaped area in question. When he started talking about a liver biopsy, my student mind raced to the fact that at least the area was on the left lobe, which isn’t very deep — technical thoughts overridden by a daughter’s protests that this was too soon for her mother to die. My mother and I were quiet on the way home, but jubilant when the biopsy came back normal a week later.

The further I progressed in school, the better I understood my mother’s doctors, and I could translate her story into a medical case history: A 42-year-old woman found a lump in her breast that turned out to be cancerous. She had a lumpectomy, and underwent chemotherapy and radiation. Then the doctors discovered that the chronic rib pain she suffered was actually from a bone metastasis, so she was given more radiation. Unfortunately, the more I learned about medicine, the more I realized how slim her chance for survival was.

Carrying this knowledge became increasingly painful. My mother, a spirited woman who loved to laugh, was only 20 years older than me; before the cancer I took for granted that she would be around for a long time. Now the woman who had taught me almost everything I knew had made me her durable power of attorney for medical decisions, explaining that if she wasn’t able to make sound judgments, I was best suited. This was my mother, who did everything better than me, except maybe sewing. She had such faith in the medical profession; I could not bear to tell her we might not be able to fix this disease.

After my mother’s screening tests and scans had been clean for about a year, we celebrated. Still, the oncologists suggested that she save for the possibility of a bone marrow transplant. I visited her after her painful marrow harvest some months later. The anesthesiologists had been unable to find an intravenous site on her pale arms—so they threaded an IV into a vein in her neck. The plastic tubing made it impossible for her to turn her head to the left. I was simultaneously intrigued and repelled. This was more anatomy than I wanted to remember.

My mother wanted to get up and use the bathroom. My sister and I started to help her to her feet, only to have her slump in our arms. The nurse came in and chided us; despite the transfused blood my mother had banked, she was still desperately anemic. I was glad my mother wasn’t feeling well enough to introduce me that day.

This is my daughter, the M.D./PhD. student. She’s doing research on cell division. My mother’s health was good once again; she swam, she gardened. In the laboratory, I grew flasks of human fibroblasts and used growth hormones to tease out what made them divide. If scientists could figure that out, I said, we’d be on our way to understanding the signal for the uncontrolled cell growth that is cancer.

My family had lived with breast cancer for five years already, but I knew it wasn’t over. Scouring Medline, I learned to be critical about medical research. I looked at five year survival rates in a new light, knowing the rosy numbers were a testament to the women who hadn’t died quickly from their disease.

This is my daughter, she’s done with research, and back in medical school. I eyed the terse oncologist; I could tell he had bad news. The cancer had spread to the lymph nodes in my mother’s chest. He recommended more chemotherapy, then he left. My mother had countless questions, but he left.

Soon afterwards I was on the wards, and there was cancer everywhere: ovarian, lung, breast, liver. I learned that some laboratory tests aren’t very specific: their results only hint at an underlying process. One that my mother treated like an oracle was the blood test for lactate dehydrogenase (LDH); the reading gives an indirect indication of inflammation and malignancy. During her decade of cancer, my mother’s LDH rose and fell like the tide. I think she focused on it because it was the only lab result that was consistently out of range. She used it as part yardstick, part divining rod.

Talking with me on the telephone at night, she tried to read into the significance of every fine change in her LDH. In my heart of hearts, I dreaded these discussions. For me there was no mystery; my mother’s LDH was elevated because she had cancer. But while my mother despaired at times over her LDH, she crowed about her perfect hemoglobin, an indicator that the body has enough iron to make red blood cells. To her mind, she couldn’t be that sick if her hemoglobin was normal after all the surgery, chemotherapy, and radiation she had gone through.

This is my daughter, the pediatric resident. I shook hands with her newest oncologist. He was an oncology fellow, and no more than four years older than me. My mother had a metastatic tumor the size of a golf ball deep in her chest. Consulting surgery texts, I knew it was inoperable. She had gone bald again, this time from Taxol. I compared her chemotherapy cocktail with articles I pulled from the medical literature. My mother went to a cancer make-over with her support group and came home with a bright auburn wig.

During this round of chemotherapy doctors placed a Porta-cath the size of a quarter underneath the skin near her collarbone. To use it to draw blood or inject drugs, the nurses had to stick a needle through tender chest skin. I signed for a box of EMLA anesthetic cream from a drug rep so my mother could numb the skin over the Porta-cath site. We used EMLA all the time at the children’s hospital, but over at the cancer center, they’d never heard of it.

The oncologist gauged the chemotherapy’s effectiveness with serial CT scans. At first, we could see the tumor shrinking. But on one visit, he hung two CT images taken from different anatomical planes to make his comparison, accidentally skewing the results. When I pointed it out and he hung comparable images, the change in the tumor size between treatments was negligible. My eye for medical detail championed truth but trampled hope.

In a last-ditch effort, the oncologist tried to make monoclonal antibodies to attack my mother’s cancer cells. To do this, he needed the pathology slides from my mother’s first surgery. Entering a hospital that I hadn’t visited since my mother’s initial diagnosis, I strode through the pathology lab daring anyone to challenge me. “I’m Doctor Asta, and I’m here to pick up my mother’s biopsy slides.”

This is my daughter, the doctor. She’s in private practice now. My mother never got to say that; she never saw me hang out my shingle. In February 1996 she died. Her illness and death taught me volumes about the fallibility of medicine, the search for hope and alternative therapies, and the often turbulent relationship between patient and doctor. Today I’m both daughter and doctor, and I practice the medicine I learned from my mother, the patient.