“In my life, there is cancer and everything else. It is one chapter in my story. We all have a story. And it is important that we share it because I believe a story is the shortest distance between two people. For me, I’m a work-in-progress on how to turn an inspirational story into an inspirational life.” ~ Ellen O. Kalinosky
“I’ve lived with cancer for 35 years,” says Ellen O. Kalinosky, a smile creasing her cheeks, “but I’m so much more than that.”
When does one turn the page? Start a new chapter? And more importantly, how? “Now it’s time for a new chapter. I’m working on the ‘how.’”
Ever since she was 25—when she received the results from the routine pre-marital blood test—Ellen has seen cancer up close. She wasn’t just ill, said her doctors, she was dying. Although initial blood and bone marrow tests were inconclusive in helping doctors diagnose the illness, they were sure about one thing: she probably had six months to live. They suggested that she and Joe postpone their upcoming marriage. Urged by her sister, a nurse, Ellen then headed for a different set of doctors in a different hospital. It didn’t occur to her and Joe not to marry.
Ellen’s manicured nails with their colorless polish touch the edge of the table as she recalls a life facing cancer. The new doctors suggested she had a rare and, at that time, often fatal disease, severe aplastic anemia, and began treating her with steroids.
“I sought advice everywhere. There was no internet then, no Microsoft or Google, so I went to the local hospitals and borrowed journals from their medical libraries. I found a resource in my mom’s Good Housekeeping magazine, a list of the 25 best oncologists in the U.S. I wrote letters to them all, and every one of them wrote me back, directing me to Duke University Medical Center.” Finally, after three years, nine doctors and three hospitals, the preliminary diagnosis was confirmed: severe aplastic anemia. Two months later, the doctors added the diagnosis of an even rarer disease, PNH.
She entered Duke in 1987 to receive a then-experimental protocol of immunosuppressive therapy developed from horse serum called ATG (anti-thymocyte globulin). “The treatment is common now—it’s an overnight procedure–but years ago I was a guinea pig.” By the end of the month-long treatment, she had developed serum sickness, and lost her muscle tone and the ability to walk. She was sent home to wait for a response and to recover—or not.
Finally, a year later, her bone marrow began to improve sufficiently enough that she could begin to think about a disease-free future.
Ellen’s research had paid off. At each juncture, she prodigiously researched her illness and her options, with the same disciplined approach she had used in her career in Knowledge and Information Management at Air Products, Apple, Merck and PPL.
She has lived her life with fortitude and tenacity, determined not to let the diagnoses alter her plans. She’d been advised not to marry—but she did, and remains happily so with the man who has been what she calls her “secret weapon” for 35 years. She was advised not to get pregnant, but, again, got advice from experts and found a gynecologist who would support the pregnancy. Kate, now an engineer, was born—only the ninth child born to a woman with aplastic anemia and PNH in the early ’90s.
Ellen has also lived her life with hope. “When I was in my 20s, my doctor said to me, ‘Listen, missy, you’ve got one thing, and that’s hope. Hope only goes one way, and that way is forward.’” She elaborates, “Don’t ask, ‘Why me? Did I do something wrong?’ Don’t dwell on things you can’t change. Hope takes you forward. It may not always get you what you want or expect, but it keeps you moving in the right direction.”
And so it did. The years passed.
And then one day, in 2013, as she alighted from a plane after a business trip, she glanced at her hand and saw a tiny bruise, the kind of bruise most people would ignore, but not someone whose bone marrow had already failed her. She knew what she had to do: blood tests.
She brought a year-old script for bloodwork to the lab. The technician glanced at it and pronounced it expired. But a second technician looked and noticed it expired at midnight. Ellen got in under the wire.
Her doctor called almost immediately to say he was sending an ambulance to her house to fetch her. Something was very wrong. “Give me the night. I’ll report tomorrow,” Ellen sighs.
“Life changes in a single breath. We should all practice gratitude every day. I am grateful that when I wake up each morning, my feet touch the floor, that I have the privilege of time with my husband, my daughter, my family and friends.”
She thought aplastic anemia had recurred. But it hadn’t. She had MDS, myelodysplastic syndrome.
Ellen had “won” the trifecta, having acquired all three of the major blood disorders in the family of bone marrow failures. “I am the longest survivor of all three diseases,” she says, matter-of-factly. Her earrings, a testament to her creative side—dangling paperclips in each ear matched with a Phillips screw head and flat screw head respectively—glimmer in sunlight.
“My husband and I sat in the doctor’s waiting room, holding hands. I looked down and saw the same two hands that I’d seen 30 years ago, almost to the day, but now they had age spots,” Ellen smiles and glances out the window. “The doctor said there was no way, given my medical history, that I could be alive. He was in awe of me.”
She was confused, shocked and angry. “I hadn’t been angry at 25, but now, at 55, I was very angry and was paralyzed with fear. I thought I had paid my dues,” Ellen shakes her head slightly.
Reeling from her new diagnosis, she needed more than hope this time. Joe sat her down, and asked her a simple question: “How do you eat an elephant?” Then he answered: “You eat an elephant one bite at a time.” After that, every day began with him asking, “What is the bite today?” Ellen smiles, “If you look at the whole elephant, it is big and scary. So, take the elephant apart one bite at a time. It becomes manageable. This approach works.”
Ellen sits upright. “I didn’t know what it was like not to have a ‘secret weapon’ until I met someone going through a medical crisis alone.” She hesitates in thought. “You need a team. You need an advocate, a worrier, a pragmatist, a hoper, a doer.”
She regained her footing, and began her research again. For this new disease, this new challenge, she needed a new team. “Now, I had access to the internet. I looked at government and hospital websites, researching trials, outcomes and doctors. And I emailed a woman I’d met in a support group 30 years ago. We were both surprised to be alive. She recommended her doctor, and I made an appointment.”
Ellen plucks at a thread on her red puffy jacket. “I had to research to survive these diseases. We kept going from door to door until we found one that opened. We didn’t always get the answer, but I followed my husband’s other approach: do everything we can, get the best medical team, the best support system, and then—it is out of our hands. Whatever the outcome would be, we couldn’t say it was because we didn’t do our best.”
Ellen’s new doctor recommended a bone marrow transplant. Without it, Ellen might live 18 months. And she and Joe agreed: go for the cure. As feared, her disease then progressed from MDS to AML, acute myeloid leukemia a few months before her transplant.
Having completed the pre-transplant regime as an outpatient in September 2013, Ellen entered the hospital in January 2014 to receive massive doses of chemotherapy, followed by her brother’s stem cells, his “gift of life” to her, as she says. Survival depended on her body’s accepting the donation and simultaneously growing her new immune system. Supported by her husband and sister, who rotated the required 24-hour caregiver duties, and her daughter, then in college, Ellen faced the daily challenges of existence in her protected environment.
While in isolation, she began doodling, turning thoughts and musings into art. The hospital had a recreation program with many creative opportunities. “I had been a silver smith for eight years, and when the doctors told me I couldn’t bring any tools, I felt lost. When you’re being creative–whether it’s through cooking, reading, music or writing–something happens that goes so much deeper than words,” notes Ellen.
After three months, she moved to the American Cancer Society’s Hope Lodge for 100 days to continue the recovery: learning to eat, gaining strength and monitoring progress.
By January 2016—two years later—she had regained her strength and undergone some changes. “My new normal was adjusting to not working in the same capacity I had for over 35 years, continuing to protect my still-infant-like immune system and figuring out the big question that those of us who look death in the eye ask ourselves, ‘What is my purpose?’”
Ellen’s appearance changed too. She lost 75 pounds and the long brown hair she’d had all her life. But she didn’t grow it back. She runs her fingers through her short, spikey grey-blond hair. “I took baldness as a freedom,” she says.
Now, there is no evidence of disease.
“In my life, there is cancer and everything else,” continues Ellen thoughtfully. “It is one chapter in my story. Well, maybe two,” She laughs. “We all have a story. And it is important that we share it because I believe a story is the shortest distance between two people. For me, I’m a work-in-progress on how to turn an inspirational story into an inspirational life.”
Ellen volunteers at the Cancer Support Community, teaching the Art of Doodling, sharing her method of the art, and telling people to be more creative than they believe they can be.