Photo by Bo Jungmayer / Fred Hutch
Along with lives, cancer can steal a person’s identity. Or try to, anyway.
Linda Binder was a 19-year-old Colorado State University freshman when she was diagnosed with chronic myeloid leukemia (CML). Suddenly, she was no longer a college student cramming for finals; she was a cancer patient with a terminal diagnosis.
She was also a bit of a guinea pig, signing on for a then-experimental treatment known as a bone marrow transplant.
The grueling procedure saved Binder’s life but also took something away: her fingerprints.
“My hands turned red and got inflamed and then peeled and I noticed my fingerprints were gone,” said Binder, who, despite the “identity theft” remains very much her own person. “When I had a background check a few years ago, they were swabbing my fingers for prints and the guy looked at me and said, ‘What is with your fingers? Were you in a fire? What happened to you?’”
Now 49, the Fort Collins, Colorado, native visited Fred Hutchinson Cancer Research Center this week to mark the 30th anniversary of her bone marrow transplant by sharing her journey – and a few random acts of kindness – with fellow cancer patients.
“I’ve made it 30 years,” she said. “I don’t die easy.”
‘So you’re telling me there’s a chance’
At age 19, Binder didn’t know much about leukemia but did know the bruises that suddenly started showing up on her legs were not normal. She showed the bruises to her mother who pushed for her to see a doctor. He did a blood test and shortly thereafter, she was given a shocking diagnosis.
“I was told I had CML leukemia and was given two to five years to live,” she said. “And then they told me about the bone marrow transplant. At that stage, it was very experimental -- but there was a chance. It was kind of like that scene in [the movie], ‘Dumb and Dumber’ where [Jim Carey] says, ‘So you’re telling me there’s a chance?’ As long as I had a chance, I was seizing it. There was no other option for me.”
Binder’s siblings were tested and her older sister turned out to be a good match. So in October 1984, the family made plans to temporarily move to Seattle for her treatment. Before they left, though, Binder asked her parents if she could get out and live a little.
“My parents let me have my wings to fly,” she said. “I went to Las Vegas. I went to Disneyland. Periodically, I’ll ask people, ‘Have you ever had the opportunity to live as if you had nothing to lose?’ That’s what I had from the moment I was diagnosed until the moment I was transplanted. In that three and a half months, I had the time of my life.”
Irreverent even in the face of death, Binder threw a bon voyage party where she and her girlfriends watched the 1970 tearjerker, ‘Love Story’ (Ali MacGraw’s character dies of leukemia in the movie). Then she and her family came to Seattle, living in a converted motel room until her parents were able to find an apartment close to the Fred Hutch facilities, then located at Swedish Medical Center on Capitol Hill.
Treatment was “hellacious,” Binder admits. The teen went through two days of intense chemotherapy followed by six daily sessions of total body irradiation (TBI), all with the goal of destroying as much of the cancer as possible and prepping her body for the “foreign” marrow.
“I would get back to my room and maybe have 30 minutes before I got violently ill from the radiation,” she said. “I lost my fingernails, my eyebrows, my hair, my taste buds. It was hard, but I was just stubborn. I saw the devastation in my parents and I wasn’t about to let them go home to Fort Collins without me.”
Her self-proclaimed stubbornness paid off. Seven days after her November 8, 1984 transplant, her blood work showed an improvement. The transplant had taken.
Getting back to life
Binder remained in Seattle as a patient until February 1985, keeping her spirits up by talking to other patients and their families and making bets with her nurses that she would indeed wear her “obnoxious” wig every day she was in the hospital (she won).
One family shared with her the Japanese legend that promises that anyone who folds 1,000 origami cranes will be granted a wish. Binder carried the story home with her – along with gratitude for a second chance at life.
After a year of rest and recovery, the young woman took up her life again. She decided not to return to college (“I told my parents, ‘College almost killed me – I’m not going back!’”) and started dating a man she’d met shortly before her bone marrow transplant, a man she eventually married.
“One kiss was all it took,” said Larry Binder of their courtship. “Although when we were just starting to go out, there were so many people who were looking out for her that I knew if it didn’t work out, I’d have to leave the country.”
Binder found the same kind of support at the pulmonary clinic where she went to work as a receptionist. Twenty six years later, she’s the clinic’s practice administrator.
Photo by Michael Nank / Fred Hutch
“I love it,” said Binder, now a mother of two. “The doctors are phenomenal and they’ve stuck by my side with everything I’ve been through.”
And Binder has been through a few trials as an adult, including cataract surgery and a breast cancer diagnosis in 1996, both of which she attributes to the radiation she had at 19. Binder opted for a double mastectomy (with immediate reconstruction) but did not do any additional treatment.
“It was a good decision,” she said.
The flight of 1,000 paper cranes
Although Binder doesn’t dwell on the disease that’s now touched her twice, she does mark important milestones as they pass, treating her bone marrow transplant date – November 8 – almost like a birthday. This year, she decided to do something a little extra to celebrate, inspired in part by the story she heard long ago while receiving treatment in Seattle.
“[My] goal was to raise cash donations to give to cancer patients who are currently going through treatment and to bring hope to as many people as possible,” said, Binder, who spent a year folding 1,000 origami cranes as a way to bring in donations. “I have been touched by the kindness that has come forth.”
Binder, who dubbed her grassroots fundraiser The Flight of a Thousand Paper Cranes, originally hoped to raise $2,000, passing it on to patients along with her wish: that they would be free from cancer now and forever. Instead, people began sharing her story and she ended up raising nearly $10,000.
“I don’t have a website or Facebook; people just emailed me or called me,” said Binder, who numbered and signed every crane and recorded the donor and amount, which was then deposited into a separate bank account. “It was very amazing.”
On the 30th anniversary of her bone marrow transplant, Binder and her husband flew to Seattle to distribute the funds and talk treatment and recovery with patients at Seattle Cancer Care Alliance.
“I always wanted to walk up to somebody and hand them money and say, ‘Here you go. Do with it what you want,’” said Binder, who readily admitted her patient-to-patient outreach was a bit unconventional. “I’ve always wanted to do a random act of kindness.”
This week she did just that, spending time with a handful of patients at SCCA, each of whom received a card detailing her 30-year journey, two origami cranes (orange for leukemia survivor and yellow for hope) and five crisp $100 dollar bills. She also reconnected with Dr. Fred Appelbaum who was enthusiastic about how far his patient had come in three decades.
“Having a chance to see Linda and her husband 30 years after her transplant was wonderful,” said Appelbaum. “She’s so vibrant, full of life and appreciative. At the same time, every success reminds me as well of the patients who aren’t here, and why we have to keep improving.”
Binder, too, is mindful of the gift of life – and perspective – she received after going through her bone marrow transplant.
“As weird as this sounds, I wouldn’t trade this experience in for anything,” she said. “Some people never have the opportunity to live with the true meaning of life in the palm of their hand. I’ve been able to do that. Everybody has their own definition of what constitutes a bad day. My bad day was being told I had two years to live. Anything other than that …”
Binder shrugs, leaving the question hanging.
How was it connecting with others going through the same thing she experienced all those years ago?
“It was beautiful, everything I hoped it would be,” said a survivor who even without fingerprints, has managed to leave an indelible mark on others’ lives. “I saw myself in every one of them. I just hope that what they saw in me gave them hope.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has also written extensively about health issues for nbcnews.com, TODAY.com, CNN.com, MSN.com, Columns and several other publications. She also writes the breast cancer blog, doublewhammied.com. Reach her at firstname.lastname@example.org.
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