“I would like to have lived longer, worked longer,” Sister Mary Andrew Matesich, a Catholic nun, told me in 2004. But, she said, “It’s not the hand I’ve been dealt.”
She had breast cancer that had spread, and she had volunteered for experimental treatments, knowing they would probably not save her but hoping the research would help other patients.
“I wouldn’t be alive today if other women hadn’t been in clinical trials,” she said.
She died about a year after we spoke. She was 66.
In 22 years of writing about medicine for The New York Times, I’ve covered births, deaths, diseases, new treatments that worked and some that failed, bold innovations in surgery and countless studies written up in medical journals. The goal has always been to provide clear information that readers would find useful and interesting, and to show the human side, what the news might mean for patients. Reporting on Covid in the past year, my work focused on vaccines and treatments, and also people with other serious illnesses who missed out on care because of the pandemic.
Today is my last day as a staff writer at The Times. As I head into retirement, what stays with me most vividly are the people: their faces, their voices, their stories, the unexpected truths they revealed — sometimes after I put my notebook away — that shook or taught or humbled me, and reminded me that this beat is about much more than all the data I had tried to parse over the decades. It is a window into the ways that illness and injury can shape people’s lives, and the tremendous differences that advances in medicine can make, for those who have access to them.
Many who spoke with me had suddenly become what we all fear turning into — patients — and faced tough situations. None were looking for attention, but they consented to interviews in the hopes that their stories might help or encourage other people.
Tom and Kari Whitehead invited me into their home in 2012 to meet their daughter, Emily, then 7, who had been near death from leukemia when they gambled on an experimental treatment that genetically altered some of her cells. She was the first child to receive it. During our visit seven months after she was treated, she was doing somersaults and had decorated the family’s Christmas tree with a naked Barbie doll. Emily is 16 now, and the treatment she received was approved by the Food and Drug Administration in 2017.
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Other stories were achingly instructive. A woman described her painful, aggressive cancer, caused by a sexually transmitted virus, but needed her name left out because she believed her mother-in-law would call her a “slut” if she learned the diagnosis.
A young former Marine, with a brain injury and severe damage to his face from a bomb in Iraq, said he had had a girlfriend before his deployment, and they had talked about getting married when he came back. “But I didn’t come back,” he said.
Moments of kindness and wisdom stand out, too. A physician, pointing out that a little extra time for a cancer patient could mean being there for a wedding or graduation, forever softened my science writer’s cynicism about treatments that might add just months to a person’s life.
In the middle of the night, I accompanied a transplant team assigned to recover organs, with parental consent, from a young woman who was brain-dead from a drug overdose. The team members slipped into a waiting room, taking special care to make sure that the relatives would not have to see the ice chests that would carry the young woman’s organs, including her heart.
Looking for help with an article in January, I told Dr. James Bussel, an expert on blood disorders at Weill Cornell Medicine, about a woman who had developed a severe bleeding problem after a Covid vaccination. He surprised me by asking for the family’s phone number, so he could offer to help. Guided by Dr. Bussel, the woman’s doctors altered her treatment, a course change that the patient believes saved her life. Since then, Dr. Bussel has provided similar help in about 30 to 40 other cases of this rare disorder around the country.
When I asked why he was willing to get involved, he said he had become a doctor to help people, and added, “I feel like I have this specialized knowledge and it would be silly to waste it, if I could make a contribution and help somebody.”
In a smaller way, I’ve had similar aspirations. I’ve had the chance to do work that I believe is valuable, and that I hoped might do some good. Reporting for The Times has been a license to meet fascinating people and ask them endless questions. I am in debt to everyone who took the time to talk to me, and I hope I’ve done their stories justice.
