How do you thank someone for saving your life? Ellen Nottingham has had two years to ponder that question.
Diagnosed in the spring of 2016 with acute myeloid leukemia at a large hospital in Seattle, Nottingham was told by a team of three doctors that she had two weeks to live. One of them remained in the room after the other two left and offered a different option, saying quietly, “You could go to Seattle Cancer Care Alliance (SCCA) and see if they have a clinical trial you could join.”
Nottingham had “all the energy of a doormat” at the time, but she decided to seek a second opinion at SCCA, where Dr. Elihu Estey – who advises the Food and Drug Administration on drugs related to Nottingham’s type of cancer -- enrolled her in a clinical trial involving five chemotherapy medications. By October, she was in remission. “I was immensely grateful for the revised story of my life that SCCA gave me,” says Nottingham, 73, a retired teacher and school administrator who lives in Seattle. “Writing a thank you note didn’t seem sufficient.”
Nottingham started looking into volunteer options. When she inquired where at SCCA she could be most useful, she was directed to the gift shop. Once a week, Nottingham takes a four-hour shift behind the counter, ringing up purchases and expressing solidarity with patients. Recently, a woman who’d lost her hair during treatment was trying on earrings when she noticed in the gift shop’s mirror that her hair was growing back curly. “I remember that happening to me,” Nottingham told the woman. That prompted another customer to pipe up and share a similar experience.
“There’s a wonderful coming together of people talking about their experience and getting a feeling of camaraderie, of having been there, done that,” she said.
A place to buy a stick of gum, a pair of earrings — or a breast prosthetic
Ten years ago, if you wanted to buy some mints or a thoughtful greeting card for a patient at SCCA, you were out of luck. There was no gift shop to speak of.
Fast forward a decade, and there are two, including the small shop in the lobby of the SCCA clinic where Nottingham volunteers and Shine, a meticulously curated retail store in South Lake Union, adjacent to SCCA House.
The gift shop opened in 2008 after Eileen Hood and Carrie Jacobsen, business partners for 25 years, were brought in to turn a former classroom in the SCCA clinic into a place to pick up a stylish hat for patients who’d lost their hair or some hand lotion for chapped skin.
Soon, the store managers started getting requests from patients whose doctors had recommended products that weren’t easily sourced – compression stockings, for example, or bras for post-mastectomy patients. Hood and Jacobsen pitched the idea of a larger store off campus that would double as a gift shop and a place where cancer patients could find specialized products.
Shine opened in 2012 in South Lake Union. It’s run by Hood and Jacobsen, along with a sales associate, a lead certified mastectomy fitter and a slew of volunteers. Volunteers are asked to work a three- to four-hour shift at least twice a month. Licensed cosmetologists are also needed to do head shaves, trims and wig stylings for patients and caregivers. Funds raised support SCCA’s patient and family programs including complimentary head shaves, yoga for patients, the Shine Assistance Fund and patient events.
“There’s a misconception that volunteers in gift shops don’t have patient interaction,” says Erica Karlovits, who oversees SCCA’s volunteer services and retail stores. “All of our gift shop volunteers interact with patients, helping them find the right hat or the perfect gift to turn their day around.”
A store with a mission
The front portion of Shine looks like any other classy boutique, replete with carefully curated sweaters and skirts, jewelry, books, games and cards. “Most of our cards are blank so that people are inspired to write something real and long,” says Jacobsen.
But look a little closer and it becomes apparent that this is a store with a mission. Shine welcomes the typical retail customer looking for a cute pair of earrings, but they also cater to patients. The cooking section stocks whimsical gifts such as a butter-churning kit, cookie cutters and tiny Mason jars. But there’s also a whey protein powder recommended by SCCA dietitians because it has no added sugar or salt, along with a cookbook called “The Cancer-Fighting Kitchen.”
“People love the cooking section,” says Jacobsen. “It makes them feel hopeful and think, ‘How am I going to change my life as a result of my diagnosis?’”
Shine offers many types of compression garments for patients with venous issues or lymphedema. A certified mastectomy fitter helps women with breast prosthetics or finding the right bra. Cancer can cause sexual side effects so a sexual intimacy section offers dilator kits and products to aid men in achieving an erection.
There’s an extensive hat collection, wigs and head coverings, which is by design. “It’s what gets patients in here, that fear of losing their hair,” says Hood. “We start with hats. We like to think of it as the beginning of our relationship with a patient.”
It’s not unusual for Hood or Jacobsen to team up with a patient’s nurse or doctor to ensure that the patient is receiving the most useful products. “We say all the time that this is retail nirvana,” says Jacobsen. “We get to see how we complete SCCA’s care circle.”
Fred Hutch is recruiting volunteers for its January orientation. Learn more here or contact clinicvolunteer@fredhutch.org.
