One Support Group Changed Everything – Eden’s story
One Support Group Changed Everything – Eden’s Story
Eden’s mom, Lynda, and dad, Jack, celebrating one of Eden’s cancerversaries in the early 2000s
Outside of family, it’s not often that we get to understand the extent to which our actions or words may impact somebody else, much less the ripple effect which that person’s resulting activities can extend to others. In this twenty-fifth year of the Ulman Foundation’s operations, however, Doug Ulman, and his family who have supported the fulfillment of his late adolescent vision into maturity, get to enjoy witnessing the far-reaching results of the influence they had on one of their very first clients.
It was November of 1997, and Eden Stotsky-Himelfarb had just turned 26. She was in great shape and overall, felt healthy and invincible as many young adults do. But upon returning home from the gym one crisp fall day and climbing a few flights of stairs — which typically didn’t even phase her — to her apartment, she collapsed on the floor in pain.
Abdominal pain wasn’t new to Eden; she’d been experiencing sporadic but persistent cramping and gastrointestinal distress for about eight years. She had sought care and information, routinely seeing her primary care physician and gynecologist every six months since beginning college at 18, but none of her doctors ever identified a culprit for her symptoms. As is the case for many adolescents and young adults who eventually receive a cancer diagnosis, Eden heard things like, “You’ve pulled a muscle,” “You’re drinking too much alcohol,” and even “Stop drinking through a straw…you’re getting too much air into your system.” She often felt as though healthcare professionals saw her as “just” a college student, not as the self-aware adult she was.
Until that November day, though, the pain had never been extreme enough to bring Eden to assert herself and request further testing. Her present agony caused her to dig her flip phone from her bag and call her doctor, this time standing firm — ironically while laying down — and insist that they figure out what was wrong.
An abdominal X-Ray, CT scan, and colonoscopy later, a GI specialist pulled back the curtain enclosing the hospital bed where Eden was resting, and with bloodshot eyes that gave away his surprise and distress, told her she was one of the youngest rectal cancer patients he had ever met. She soon returned to Johns Hopkins Hospital for surgery with Dr. Michael Choti, a now internationally-recognized pancreatic-hepatobiliary surgeon and surgical oncologist. Like the Ulmans, Dr. Choti would also come to have an incredible impact on Eden’s path.
Early on into the six months of chemotherapy and radiation that followed, Eden found herself feeling lost, overwhelmed, and in need of empathy from other young adults who were currently in her shoes. The first support group Eden located sounded promising, but after finding the courage and energy to check it out, she and her parents arrived at an empty room, except for a solitary social worker. Her mom, Lynda, and her dad, Jack, kept searching and saw an ad in the Baltimore Jewish Times for a young adult cancer support group in Columbia, MD, hosted by the Ulman Cancer Fund for Young Adults. With low expectations based on her previous experience, Eden decided to give it a try.
What Eden found when Jack and Lynda dropped her off that day would alter not just the course of the remainder of her time in treatment, but the rest of her life. Six or seven other young adults, including Doug Ulman who was going through cancer treatment himself, awaited Eden at the support group. She immediately felt seen and understood; these late teens and twenty-somethings were all experiencing the upheaval, awkwardness, pain, and questions that she was, at a time when they should have been ‘living it up’ and planning for their futures. Over the next few months, she formed deep bonds with group members, and over the coming years, she’d sadly say goodbye to some whose young lives cancer claimed, and keep in touch with others as their lives took them into their professions, parenthood, and plenty of other adventures.
Doug Ulman, Eden Stotsky-Himelfarb, and Brock Yetso at Ulman House
For Eden, the call to support others navigating colorectal cancer — both from Dr. Choti and from within — eventually outweighed the fulfillment she gained from her role in human resources at Johns Hopkins. A patient typically continues to see their surgeon following a major surgery like the one Eden had, and as she and Dr. Choti spent more time together, he saw in her a combination of lived experience, intelligence, and demeanor which he believed would make her a wonderful guide and advocate for other colorectal cancer patients. Eden quickly realized her first Bachelors Degree in Public Affairs didn’t equip her to do this work, and spent a year shadowing nurses, doctors, social workers, and public health professionals at Hopkins. She also took on leadership of the Ulman support group which had served her so well. In 2005, she enrolled in nursing school, and embarked on her next chapter of living with and among cancer.
Dr. Choti secured funding for Eden to create a navigation and community outreach program specifically for patients with GI cancers. For the following eleven and half years, she served by the side of the surgeon who had saved her life, providing education, empathy, guidance, and hope to patients whose challenges she understood all too well. Eden developed a reputation within the Hopkins Medicine community as a “go-to” for all things GI cancer.
Meanwhile, she stepped up to serve on the board of the Ulman Foundation (then still known as the Ulman Cancer Fund for Young Adults), and built her own family by way of marriage and adoption, as cancer had stolen her ability to carry children. When Dr. Choti took on a leadership appointment at a different hospital, Eden remained dedicated to Hopkins and has served in several different capacities since, with a common thread of helping individuals navigate life with cancer. As her life and career took twists and turns, the one thing that never shifted is Eden’s commitment to folks living with colorectal and related cancers. Quantifying the number of cancer patients and survivors Eden has supported would be nearly impossible. To this day, even though she now serves breast cancer patients in her official role, Eden remains on speed dial for a vast network of people — including Doug Ulman — who work in the cancer space, when they learn of a GI cancer-related need.
As it happens, those needs have unfortunately been growing in recent years. Based on recent reporting from Yale Medicine, colorectal cancer is on the rise in young adults and has been for years. The American Cancer Society reported in 2018 that the risk of colon cancer for people in their early 30s has doubled since the 1950s, and it has quadrupled for rectal cancer. The reason for the rise remains mysterious, but there is no doubt that people experiencing suspicious changes in bowel movements or rectal bleeding should visit a doctor and have an exam, and a colonoscopy if advised.
With rising rates of diagnoses in young adults, and her daily work keeping cancer constantly on Eden’s mind, she is always seeking new ways to help. As she started to approach the milestone of 25 years since her diagnosis, Eden was also paying close attention to the ways Ulman House was helping young patients. When she toured the facility and learned that one space in particular hadn’t yet been dedicated to a donor, she brought an idea to her mom, Lynda — a way to honor both of their experiences as cancer survivors, as well as the life of her late father which late term effects of cancer treatment claimed, and to add to Ulman’s patient navigation efforts. The result of a few conversations was a generous joint family gift, and the naming of the Stotsky Patient Navigation Room. It is a private, quiet, and inviting space at Ulman House, designed by Diana Ulman for important conversations among patients and patient navigators, and it will be officially dedicated this spring.
While every dedication is incredibly special, this one in particular will have a deep resonance for Eden and the Ulman family. It reflects a reach of impact which could never have been anticipated, all resulting from the courage of one cancer survivor to offer help, and the courage of another to ask for and accept it.
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