*November 2024*
Leigh Durant’s experience as the lung cancer caregiver for her mother, Alice Hughes, began in April 2024, when Alice told Leigh she just didn’t feel like herself. Leigh said, “She’s always been very aware of her body, her physical state.” Because of that, even though Alice had suffered two bouts of Covid, one quite serious, the doctors’ comments that Alice’s concerns were “just Covid” never sat right.
Alice had begun exploring some health issues. One of these was a lymph node on her kidney, for which an MRI had been scheduled. But Alice’s eye hurt and her vision was changing, so Alice spoke with her doctor, requesting that the MRI be done on her brain instead. The doctor agreed, the orders were changed, and the MRI took place. That happened on a Friday.
After the test, Alice, Leigh’s sister, Allyssa, and Leigh headed back to Alice’s home. “The minute we walked through the door,” Leigh said, “the phone rang. They said, ‘Take her to the ER in Boston immediately.’
“There were two masses on her brain. By Sunday, she was in emergency surgery.”
One of the tumors, on the cerebrum, was very large. The second one, on the cerebellum, was smaller. “By looking at the scan, they knew it was cancer,” said Leigh. “They just didn’t know what kind.”
Alice was released to rehab after the surgery, where she spent two weeks. Then the pathology report came back. “It was lung cancer– EGFR adenocarcinoma,” said Leigh. There was minimal evidence of cancer in the lung– no nodules of concern or growth of anything over time. “The surgeon said it didn’t make sense,” she said. None of the doctors thought it made sense. And yet, there was the report.
The oncology team at Dana Farber Hospital reached out to the family and post-surgical treatment began. Alice received radiotherapy to the surgical sites and began osimertinib (Tagrisso). Since then, she has been working hard to recover. “She didn’t really know what was going on for about three months. She lost her memory for a while,” Leigh said, “but she’s getting it back. She’s starting to feel stronger.”
Leigh describes Alice as the matriarch of the close knit family. Four of Leigh’s siblings live in the greater Boston area, and Alice has enjoyed her relationships with grandchildren, and now, a great-grandchild. “Her family is everything to her,” Leigh said. Alice has always been fiercely independent. “Even when she came home from surgery, I stayed with her only the first night,” Leigh laughed. “Then she said she was fine and sent me home.” As Alice gains strength, though, she is beginning to wish for company beyond her large family. Leigh is trying to gently persuade her to become involved with the regular Lungevity EGFR meetup, or seek other ways to connect with fellow survivors.
This most recent phase of her mother’s recovery is hard; being a caregiver in general is very hard, Leigh said. “It’s very draining, very emotional.” Leigh slipped into the role almost by chance. While several siblings live nearby, either their intense work schedules or long-dreamed- of-travel plans made Leigh the logical one to directly support her mother during diagnosis, surgery, and the aftermath. “I wouldn’t have it any other way,” Leigh said firmly. She’s the one in the family who’s most comfortable with researching lung cancer, and organizing is second nature to her. Over the summer, she started a What’sApp circle for the family and a shared document where she recorded the results of every doctor visit. “That way everybody knew what was going on,” she said. Read more.
