Hair Loss, Identity and Remission: Life After a Lymphoma Diagnosis at 29

Katie Parrinello was 29 and working full time as a real estate agent and entrepreneur when a cough that would not go away sent her looking for answers. Doctors first suspected asthma and prescribed inhalers and other medications, but the cough kept reappearing. After she pushed for a chest X-ray, a CT scan revealed a four-inch mass in her chest. Fifty days and three biopsy surgeries later, on Good Friday, April 3, she was diagnosed with primary mediastinal B-cell lymphoma (PMBCL), a lymphoma that starts in the center of the chest.

Why did a patient with PMBCL switch doctors before starting chemotherapy?

Parrinello was set to begin chemotherapy at another center the next day when she met Dr. Andre Goy, chair of John Theurer Cancer Center and leader of its lymphoma program, and switched her care at the last minute. She said the time he spent with her and her parents, explaining how serious and aggressive her cancer was, gave her the confidence to make that change. She started treatment within two days.

How does hair loss during lymphoma treatment affect identity?

Her treatment took place in the hospital, four days at a time. The hardest moment came after her port surgery, when she could not wash her hair for days and it matted to the point that nurses had to remove it.

"I know a lot of people say it's just hair. Well, no, that was like my identity," Parrinello said.

What support helped during inpatient lymphoma treatment?

Parrinello said the nurses treated her like family. Her husband stayed with her overnight in the hospital, and her parents and sister came to appointments and visits throughout treatment. Goy had told her many patients reach remission partway through treatment, and four days before her 30th birthday, she did. She finished treatment about six weeks before this interview.

What resources can help patients with lymphoma prepare for hair loss?

Parrinello, a member of the leadership committee at Blood Cancer United (formerly the Leukemia & Lymphoma Society) and its Visionary of the Year last year, now wants other patients to have the wig education she lacked when she rushed to buy one in the two days before starting treatment. She credits Wigs and Wishes, a South Jersey organization that provides free wigs to patients with cancer, and Mary's Place by the Sea, a retreat center in Ocean Grove for women with cancer, with helping her through.

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