As the dark sky and a brief torrential rain morphed into a bright sunny day, Rachel Payne and her husband, Eric, sat at the dining table, just off their newly renovated kitchen.
Radiating energy in a sundress that showed off an athlete’s body with Michelle Obama-buff arms and muscled legs, she looked every inch the national Cheer Coach of the Year 2015 she is.
Blue eyes sparkled as she talked about her newest passions:
Her twice-a-week CrossFit workouts, an intense hour of balance work and barbell weight lifts she calls “great for gymnasts.” They provide regular fixes for her appetite for competition—satisfied and then some for the last six years as head cheer coach for Davenport University.
She used to compete herself, as part of an all-star cheer team, but that came to a halt when cancer claimed a chapter of her life.
Old at 20?
In May 2009, at age 20, doctors diagnosed Rachel with diffuse large B-cell non-Hodgkin lymphoma in her knee.
When the trouble started, she was initially diagnosed with tendinitis, wore a pressure bandage to finish the season and went through six months of physical therapy.
Then, with no identifiable cause, things got worse.
“None of us thought ‘cancer,’” she said. “I thought, ‘I’m getting old. I’m not 12 anymore, and I can’t do these flips.’ … You never hear of people who have cancer just in the knee or who get cancer when they’re 20.”
But there it was. The diagnosis.
After an inquiry by her dad, it was decided she would do better treated as a pediatrics patient, rather than as an adult.
Within days of meeting with Deanna Mitchell, MD, at Spectrum Health Helen DeVos Children’s Hospital, Rachel had a chest port implanted and started chemotherapy.
“The doctor kept saying, ‘It’s very treatable,’” Rachel recalled.
Despite a good prognosis and a low rate of recurrence, hearing that didn’t help her until much later.
“I thought I was going to die,” she said.
The end of the world it was not
Her focus turned toward at least saving her hair.
“At first I thought that would be the worst,” she said. “I loved my long hair. …I asked if they could just cut off my leg. Then I asked if they could only do radiation on my knee so I wouldn’t lose my hair. I must have asked 100 times why they couldn’t just radiate my knee.”
Yes, they could simply concentrate on the knee, but the chance of recurrence was higher.
Looking back, Rachel laughs at how “ridiculous” her knee-only focus was: If one cell escaped treatment, the cancer would still be on the loose.
“Now I’m so happy with the way I went, because I’m so confident about it not recurring,” she said.
In the beginning, she admits she probably came across as stubborn.
“I didn’t want people to know I had cancer. I didn’t want people to feel bad for me,” she said. “They look at you like you’re a ghost. Being stubborn and sticking to ‘I’m fine’ not only showed others, it showed me.”
Toward the end of treatment, when chemo’s cumulative effects were doing their exhausting, weakening worst, the family headed for a vacation on Mackinac Island.
“Normally, I would have been home on the couch,” Rachel recalled.
Instead, she did everything the rest of the family did—including biking 8 miles around the island wearing her wig.
“I needed to prove to myself this was not going to stop me,” she said.
Her outlook on life changed during her cancer journey. Rachel said she used to be “uptight” about little things, but then she started asking herself if it will matter in a year.
“I became more compassionate,” Rachel said.
Then, two years ago, she heard the C-word cancer patients dream about: Cured.
When past and present collide
It seems a lifetime ago, except when the past collides with the present. Given her job, it does that a lot.
She works in human resources for Spectrum Health, and the “why” she works at Spectrum “surrounds me every day when I walk through the hospital,” she said. Her four-year anniversary there will be in August.
“It’s crazy to think I’m supporting people who are supporting systems that saved my life,” she said.
There are highs when she sees one of the bright spots of that time: child-life specialist Rhys VanDemark or her pediatric oncology nurse Julie Steinbrecher.
There have been lows: When her desk was temporarily in the same place she went to get test results from Dr. Mitchell. “That was the worst,” she said.
But cancer changed her forever, and it impacted who she has become.
“I’m not normally one to strike up a conversation with strangers, but now when I see someone who is obviously a patient in an elevator, I’ll ask, ‘How is your day going?’ When you live it, you see things so differently.”
Be a ‘Question Queen’
Going through cancer diagnosis and treatment where she did, when she did, gave her what she calls a unique perspective and made her question everything.
“I’d ask what are you doing now? What will be side effects be?” she recalled. “I could better articulate what I was feeling, so I felt more in control of my care.”
In retrospect, she feels for Dr. Mitchell.
“I had to be one of Dr. Mitchell’s most difficult patients,” Rachel remembered, not only because she bombarded the doctor with questions, but “because I’d put on a tough face with everyone else, but with her I’d let down and cry. Even if I was asking a question, I’d cry.”
Sitting in her office across from the Spectrum Health Fred and Lena Meijer Heart Center, Dr. Mitchell smiled as she remembered “many questions from Rachel—some thoughtful and excellent, some more unusual, some wacky.”
Difficult, she wasn’t, said Dr. Mitchell, who is also director of the Coagulation Disorders Program for Helen DeVos Children’s Hospital.
“In Rachel’s case, she had an awareness of how much this was interrupting her life, and the life-threatening nature of it,” Dr. Mitchell said. “She wanted life to be normal.”
Dr. Mitchell saw something else, too.
“Her parents were empowering her to be her own advocate and her own voice,” she said. “They were very gifted at allowing her to be an adult, yet they were very supportive. It’s not an easy line to walk.”
As for the emotional displays, Dr. Mitchell said simply that it “is part of the intimacy between oncologist and patient. If there is an effective relationship, patients can be open and share” their fears and their triumphs.
She talks of being invited to “lots of weddings and graduations, and those give back to me. They are part of the gratification of the work.”
Life is never the same, after cancer.
Some of the chemotherapy drugs Rachel had could damage her heart, so she will need long-term followup of heart function.
The long-term effects of having cancer so young aren’t just physical, Dr. Mitchell said:
“It makes you face the possibility of death far earlier than most,” she said. “In a sense, that brings people a gift of a better perspective on life. Not to sugar-coat it because it is hard.”
“Watching it gives me that gift,” Dr. Mitchell added. “Every day to treasure the people I love.”
So much of your story I can identtify with. “In the beginning, she admits she probably came across as stubborn.” Yup, me too. I too became more “compassionate.” And, I was driven and probably one of Dr. Dujovny’s more challenging patients. Lots of questions, lots of challenges, I had tunnel vision and that was moving through the whole cancer experience as quickly as possible so I could get back to my life and living it. Loved your story~