There is an emotional toughness one must have, working with cancer patients. Oncologists tend to be pretty well-armored. You don’t, for example, expect the head of Clinical Genetic Services at Memorial Sloan-Kettering Cancer Center to get emotional when a student asks a question about surveillance after prophylactic mastectomy. So it was a surprise when Dr. Robson paused, and raised his eyes, with a blank expression that might have been masking tears. “I used to say no more surveillance was necessary,” he said. “But then I had a patient who rocked my world.”
Sitting in the audience, a chill ran down my spine. You see, I knew her too. Not as a counselor but as a friend. A BRCA 1 mutation ran in her family. She had tested positive for it years earlier, so after she had her beloved Sarah and Eric she did the surgery – smiled her way through it, no problems, no complaints, no second guesses. “No big deal,” she said, with a smile that dared you to doubt her. She was going to get the gift her own mother was denied: a little more time. Time to watch her kids grow up, get married, have children of their own.
It’s never an easy business telling women to cut off their healthy breasts and put themselves into an early menopause. No matter how deeply you believe in what you are offering, these are hard conversations to have. But it wouldn’t have been hard with Holly. She would have smiled from ear to ear and waved away all the negatives with a flutter of her left hand. She was brave like that, and certain.
If your prior risk of breast cancer is 85%, and a mastectomy removes 98% of the breast tissue, your posterior risk should be approximately 3%. That’s a risk reduction of 96.5%. Wonderful numbers — but only numbers. Numbers didn’t matter when Holly was diagnosed with breast cancer in 2004. Or when it came back in 2006 (stage four, incurable). I spoke to Dr. Robson and one of the genetic counselors from MSKCC after the lecture. “I know Holly too,” I said. There was pain in their faces. “She did everything right. It’s so unfair.”
“It’s not just that,” said the counselor. “She is the nicest person. Whenever someone really needs support we have them talk to Holly. She never says no.”
What can I tell you about Holly Osman? She would not forgive me if I did not describe her as happy and successful. A great family. A husband who adores her. Two wonderful kids – almost adults now. Her daughter looks just like her, but with a hell of a lot more attitude, and Holly loved that. She loved it when her kids were independent and she loved it when they needed her. Her son is ridiculous: handsome, smart, poised and kind. ‘Screw up a little,’ you want to say. Stop making the rest of us look bad.
If I had to pick one word for Holly it would be effortless. Some of us clean up nicely, but Holly looked great all the time, in a classic way that required no adornment. Roll her out of bed at 3 AM, and she would still be beautiful. And effortless wasn’t just her style, it was her way of being – ask her how things were going and she said “great!” You could try and empower her to complain a bit — good luck with that. Holly wasn’t very interested in complaining — which was annoying for me. I myself would have whined. Not Holly. Her life was SO fabulous. Her doctors were SO great. If you asked her about how treatment was going she would look blank for a moment, as though she didn’t remember what you were talking about. She had this look that seemed to say, ‘Oh yes, chemo – I had forgotten.’ Did she need anything? Could I drive carpool for her this week? “Why?” Holly said.
She was the luckiest person in the world. She insisted on that right until the last moment, until last Friday, the day she died, in Holly-fashion, quietly and without drama, nestled in the heart of the family she had nurtured on every level imaginable. I don’t know; maybe she was the luckiest person in the world. I can tell you that the rest of us left behind feel a little bit less lucky now.
She did have a lot of luck, it’s just that some of it was bad. As a friend who happened to be a genetic counselor, I always felt a little guilty, as though we had let her down. We counselors love the safety of numbers, of facts, of things we know. We told her the truth, it just wasn’t her truth. As predictive testing goes, BRCA analysis is one of the best. It has, as we say, clinical validity and clinical utility. Holly understood that too; even after her own diagnosis she counseled a much-adored younger sister to have the same surgery, the one that had failed to save her. Holly’s story is not a repudiation of what we have to offer. It is a reminder of the limitations of the fortune-teller’s art. Percentages are true only for epidemiologists, while people live out their lives as a series of n=1 experiments. There is an arrogance in the certainty of numbers that will always be undone by the stochastic process that is life.
Here’s how I know: I had a friend who rocked my world.
Rest in peace, Holls. Rest in peace.