“I would have liked to have lived longer, worked longer,” said Sister Mary Andrew Matesich, a Catholic nun in 2004. But she said, “It is not the hand that has been given to me.”
She had breast cancer that had spread and she had volunteered for experimental treatments knowing they probably wouldn’t save her but hoping the research would help other patients.
“I wouldn’t be alive today if it weren’t for other women in clinical trials,” she said.
She died about a year after our conversation. She was 66.
In 22 years of writing medicine for the New York Times, I have covered births, deaths, illnesses, new treatments that worked and some failed, bold innovations in surgery, and countless studies in medical journals. The goal has always been to provide clear information that is useful and interesting to readers, and to show the human side of what the message could mean to patients. When reporting on Covid last year, the focus of my work was on vaccines and treatments, but also on people with other serious illnesses who missed care because of the pandemic.
Today is my last day as a staff writer at The Times. When I retired, the most vivacious were the people: their faces, their voices, their stories, the unexpected truths they revealed – sometimes after I put my notebook away – that shook me or taught or humiliated me, and about it reminded that this beat is about a lot more than all of the data I’d tried to analyze over the decades. It offers a glimpse into the way disease and injury can shape people’s lives, and the huge differences medical advances can make for those who have access to them.
Many who spoke to me suddenly became what we all fear – patients – and faced difficult situations. Nobody sought attention, but they agreed to interviews in the hopes that their stories might help or encourage other people.
Tom and Kari Whitehead invited me to their home in 2012 to meet their daughter Emily, then 7, who was near death from leukemia while they were playing an experimental treatment that genetically altered some of her cells. She was the first child to have it. When we visited seven months after her treatment, she did somersaults and adorned the family’s Christmas tree with a naked Barbie doll. Emily is now 16 years old and the treatment she received was approved by the Food and Drug Administration in 2017.
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Other stories were painfully instructive. One woman described her painful, aggressive cancer caused by a sexually transmitted virus, but had to omit her name because she believed her mother-in-law would call her a “slut” when she was diagnosed.
A young former Marine with a brain injury and severe facial damage from a bomb in Iraq said he had a girlfriend prior to his deployment and they were discussing marriage when he returned. “But I didn’t come back,” he said.
Moments of kindness and wisdom also stand out. A doctor who suggested that a little extra time for a cancer patient could mean being there for a wedding or graduation forever tempered my science writer’s cynicism about treatments that could only add months to a person’s life.
In the middle of the night, I accompanied a transplant team who, with the consent of the parents, were to harvest organs from a young woman who was brain dead from an overdose. Team members slipped into a waiting room, taking special care not to allow relatives to see the ice boxes that would carry the young woman’s organs, including her heart.
Looking for help with an article in January, I told Dr. James Bussel, a blood disorders expert at Weill Cornell Medicine, told of a woman who had developed a severe bleeding problem after receiving a Covid vaccination. He surprised me by asking for the family phone number so he could offer his help. Under the direction of Dr. Bussel, the woman’s doctors changed her treatment, a change of course that the patient believes saved her life. Since then, Dr. Bussel has provided similar assistance in about 30 to 40 other cases of this rare condition across the country.
When I asked why he was ready to get involved, he said he became a doctor to help people, adding, “I feel like I have this expertise and it would be stupid to waste it, if I could contribute and help someone. “
In a lesser way, I had similar aspirations. I’ve had an opportunity to do work that I believe is valuable and that I hoped could do something good. Reporting for The Times was a license to meet fascinating people and ask them endless questions. I owe my thanks to everyone who took the time to speak to me, and I hope I lived up to their stories.
