BY ANGELA HOPP
| Textitle artist Deb Johnson
When Deb Johnson called the Journal of Biological Chemistry offices in August 2010, she had a unique request: She needed a few copies of the journal that she could tear up and turn into art.
Although we get occasional requests for copies of the journal for research and teaching purposes, this was the first time I’d ever heard of anyone asking for copies to destroy. But, by just a few minutes into the conversation with Johnson, I sensed that she was a firm believer in the potential of research and that her project had merit. Our fulfillment office made it happen for her.
Nearly a year passed, and I didn’t hear from Johnson. To be honest, part of me was a little nervous about what might have become of those journals. But any worry I might have had about the artist’s style or tastes was vanquished this summer when Johnson unveiled her work.
For Marjorie Ebenezer, it all started with a small white patch on the right side of her tongue. It was 2005, and the lifelong public health worker promptly headed to an ear, nose and throat specialist. In its first manifestation, so said the pathology report, the lesion was benign. The ENT specialist removed it, and Ebenezer went on with her life.
Two years later, in June 2007, the spot showed up again. This time, though tiny, it was found to be cancerous, officially invasive squamous cell carcinoma, and Ebenezer had it removed again. “I asked the surgeon about chemotherapy and radiation, but he said I was cured and did not need any further treatment,” Ebenezer recalls. “The treatment for my tumor size was only surgery, and he did not order any further tests.”
Ebenezer dutifully kept her follow-up appointments, and everything checked out, so she started making plans to retire early and move from Pennsylvania to Ohio, where she would be near her young grandchildren. That September, she made one last visit to her local ENT specialist, who gave her the clear but recommended a checkup in six months once she had relocated.
In March 2008, when Ebenezer was settling into life in Columbus, she noticed the lymph node on the right side of her neck was enlarged. Her new primary care physician, aware of Ebenezer’s medical history, ordered a CT scan and a needle biopsy, which confirmed that the cancer had spread.
Amid the patchwork of phrases and beneath the bronze glaze of Deb Johnson’s mask, there is a quote that has been attributed to Hippocrates: “The forms of diseases are many and the healing of them is manifold.” Photo courtesy of Joan’s Fund.
Johnson was one of 26 artists in central Ohio who spent many months transforming head-and-neck cancer patients’ used radiation masks into beautiful things. Fifteen artists from Studios on High Gallery, where Johnson’s work is exhibited, participated.
Commissioned by the Joan Levy Bisesi Foundation for Head and Neck Oncology Research, more commonly known as Joan’s Foundation, the artists’ works of art will be auctioned off in October at a gala being held in Columbus in conjunction with a research retreat for The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital, otherwise known as the OSUCCC-James.
Today, the shredded JBC pages lay bonded, overlapped and glossed – deconstructed and reconstructed in a meaningful way. Johnson titled the piece “Ascension: From Research to Treatment to Cure.”
“My goal was to create something with presence,” Johnson explains, “something that illustrated the significance of this disease and the research to help those affected. If the viewer’s eyes ascend from base to mask, the message is of research leading to treatments and at last, finally, a cure.”
The term “head and neck cancer” is used to describe various carcinomas in the nasal cavity, sinuses, mouth, throat or larynx. Most such cancers emerge first in the squamous cells that line mucosal surfaces. The National Cancer Institute estimates that head and neck cancers account for about 3 percent to 5 percent of all cancers in the United States.
For a long time, the disease was seen primarily in men and older patients, and common risk factors were thought to be smoking, chewing tobacco, drinking and exposure to certain environmental elements. Today, more attention is being paid to the occurrence of head and neck cancer among women, particularly younger women, and the role human papillomavirus might play is being explored.
Each radiation mask is molded to fit a patient’s face precisely. Plastic screws around the edges fasten to a table, immobilizing the head and neck for targeted radiation therapy. Photo courtesy of Joan’s Fund.
Johnson, the artist, says there’s something a smidge unnerving about using a radiation mask as the foundation for art, because its original purpose is anything but pretty. Radiation therapy has to be done with precision so that only cancer cells are destroyed and healthy tissues are left unaffected. Each radiation mask is specially fitted to a patient. During the procedure, the patient puts on the mask, which is then screwed into the table, leaving no wiggle room and little room for technician error.
“It’s so sad and scary,” Johnson says. “You lie on your back, encapsulated, and your head is literally screwed to the table.”
Even though the masks serve their immobilizing function well, it’s no surprise that patients are happy to be done with them once their treatment regimens are completed. Some people even get creative when it comes to disposing of them.
“Some of these survivors talk about taking these masks and running them over with their cars,” Johnson says.
Using such an object as a medium was new for Johnson, who works mostly with textiles, and for most of her gallery colleagues, who are primarily painters and ceramicists, but Johnson says it gave them license to explore.
“There’s some kind of twisted, nice irony about having this torture device made into something beautiful and then having money raised to help fund this research.”
While there were few guidelines to follow when it came to the planning and execution of the masks, the artists involved were paired with head-and-neck cancer survivors.
Johnson and Ebenezer were matched and had a lengthy visit, during which Ebenezer shared the details of her story. Ebenezer explained to Johnson that she was treated at the OSUCCC-James and that her daughter, who lives down the street and is herself a cancer survivor, dutifully chauffeured her to each treatment.
“My daughter was 25 years old when she was diagnosed in March 1996 with acute promyelocytic leukemia,” Ebenezer says. “She received her treatment (at the OSUCCC-James) … By God’s grace, she is doing well and has three beautiful girls ages 12, 8 and 6 years old.”
While illness and radiation therapy took a toll on the elder Ebenezer’s body and her relationships, today she is free of cancer and serves as a general practice physician at a free clinic run by her Lutheran church in the Columbus area.
“I am happy to help with the gifts that God has given me and to help those in need,” she says.
While Ebenezer’s experience heavily influenced Johnson’s vision for the mask, the artist already knew all too well what head and neck cancer could do to a person.
| Joan Levy Bisesi
Joan’s Foundation, the organizer of the mask project, is named after Joan Levy Bisesi, Johnson’s distant cousin. In 1996, when Bisesi was just 29, doctors discovered that a tumor in her mouth was cancerous. Bisesi immediately underwent surgery and therapy to battle back the cancer with all her might. But on the eve of her fifth cancer-free year, in 2000, it returned, spurring another round of treatments.
As her treatment neared completion, Bisesi also discovered that she was pregnant. Although her health had taken a beating, she and her husband embraced the possibilities that lay ahead, and they prepared for the arrival of their daughter, whom they already had named Mira.
Meanwhile, Bisesi and her husband also set up Joan’s Fund, an endowment fund to support head and neck cancer research at the OSUCCC-James. In an email soliciting donations from friends, she wrote in part, “I love flowers and cards, but I would rather be cured and be able to see the flowers at Mira’s wedding than to see them now.”
As Bisesi marched onward, the disease that already had taken so much out of her refused to retreat. It returned for a third and final time, spreading to her brain and forcing doctors to take the baby a month early to give Bisesi another shot at surgery that, tragically, couldn’t save her anyway. She died in 2001 when Mira was just 10 weeks old.
|Artist Deb Johnson, left, was paired with cancer survivor Marjorie Ebenezer so that she could learn about what it was liek to undergo radiation therapy and then use that knowledge to inform her work.
In May, the re-envisioned radiation masks made their public debut at Studios on High Gallery. The opening marked the first of several shows across the region.
The exhibit is known as “Courage Unmasked,” and it is an extension of the campaign by the same name that was founded by Bethesda, Md., resident Cookie Kerxton, who is also an artist and head and neck cancer survivor.
Kerxton conceived of the “Courage Unmasked” concept while undergoing radiation therapy and enlisted more than 100 artists to participate in the first event. The masks were displayed in September 2009 at American University in Washington, D.C.
Melinda Fenholt Cogley, executive director of Joan’s Foundation, the fundraising arm for Joan’s Fund, says the artists who participated in the Ohio project have expressed “a profound sense of responsibility” while creating the masks.
“They gave us an exhibit that’s beautiful, emotional and informative, and I just love watching people as they take in each story and realize what each mask means,” Cogley says. “Recently one person told me that we gave cancer a face that’s approachable, which was wonderful to hear.”
The small JBC contribution
I don’t feign to know a lot about art, and my scientific education has been informal and remains nascent. But I do sense that the act of discovery is often as rough around the edges as the paper fragments that constitute “Ascension,” Johnson’s mask, and I feel honored to have supported the Joan’s Foundations' mission, if only by facilitating a shipment of JBC back issues to Ohio.
Angela Hopp (firstname.lastname@example.org) is a science writer and handles public relations for ASBMB.