Jay Paul photos
Theodora Anne Merry usually loved people-watching, and, for seven Monday mornings, she did just that at the Fan Free Clinic.
But on this December morning, her eighth, she sat in the clinic's crowded waiting room, unable to avoid fixating on the fist-size lump in her breast.
Since October, Merry had been coming to the clinic, trying to secure one of the weekly gynecological appointments given out on a first-come, first-served basis. An artist who lost her health insurance more than a year before, Merry had no choice but to come back and wait.
The receptionist finally called out the familiar words: "Anyone here for an OB/GYN appointment? There are not any appointments left."
Nearing panic, Merry stood up and approached the front-desk receptionist who handled the scheduling. "I just looked her in the eye and said, ‘What can I do?' " Merry says. "This thing is as big as a grapefruit now. I need to have it taken care of."
The staffer gave Merry the first-available appointment, two weeks later, with the clinic's nurse practitioner. A week after that appointment, Merry had a mammogram at Retreat Doctors' Hospital. The results showed a high chance of malignancy. But she had no funds to pursue treatment.
A Basic Need Unmet
Merry, who turns 53 this month, quickly realized she was not the only one in her situation. Nationwide, about one in six adults have no health insurance, according to a 2009 Gallup poll.
And across the nation, an estimated 30 percent of the arts community is uninsured, says Marie Ortiz, program director for health care for the nonprofit group Fractured Atlas, which advises artists on insurance. Ortiz adds that the number of artists without health insurance is similar to the national average for uninsured freelance workers.
Christina Newton, who has been involved in the Richmond arts community for 17 years and is director of Curated Culture, says many of those working in the visual arts are uninsured. "Especially when you are self-employed, it is hard to afford to obtain health insurance," Newton says, adding that artists who work for nonprofit organizations often do not have access to coverage. "They are just professions that unfortunately do not offer what is a basic necessity."
The Fan Free Clinic has changed its system since Merry's visits in 2008. Cathy Wheeler, director of clinical operations, says the clinic no longer uses a queue system. Patients are assessed over the phone and assigned an appointment. Since implementing this system in September 2009, the clinic has about doubled its referrals to Access Now, a local nonprofit program for uninsured people who need specialty care, Wheeler says.
After Merry's January 2009 mammogram, the Fan Free Clinic helped her apply for care through Access Now, which is run by the Richmond Academy of Medicine. In about a month, the clinic processed her application and it was sent to the academy, marked urgent. Within 24 hours of that designation, she was talking with a surgeon.
Merry discovered her lump in December 2007. It was the size of a pecan.
"I have had cancer in my family, but always different types," she says. "Not breast cancer."
It was the holiday season, so Merry, a mother of three and grandmother of seven, waited to go to the Fan Free Clinic until January 2008. After a few weeks of waiting in line at Fan Free, she had an appointment, then her first mammogram, at Retreat Doctors' Hospital.
"It came back inconclusive," she says, recalling the letter she received and how it said a doctor would follow up with her. "I thought, ‘OK, if there's anything I need to worry about, the doctor will call me.' "
But the OB/GYN whom Merry had seen was no longer volunteering at the clinic, and Merry never followed up. "I just said, ‘There must be nothing wrong.' " Meanwhile, Merry, a graduate of VCU School of the Arts' bachelor's and master's programs, with a focus on sculpture, accepted a contract position as project coordinator of 1708 Gallery's inaugural InLight Richmond festival. "It was fun," she says energetically, her face breaking into a wide smile. "I threw myself into that work ... I loved it."
Merry admits that she was in denial about the lump in her breast. Though she could tell the lump was growing, she ignored it. By late 2008, friends were urging her to seek help, and she was back at the Fan Free Clinic.
In January 2009, she found herself in the office of Dr. Polly Stephens, a surgeon at the Virginia Breast Center at Bon Secours St. Francis Medical Center. There, she learned that she had stage 2 breast cancer, the most serious form being stage 4.
Treatment, in Reverse
Merry was diagnosed with the most common form of breast cancer, one that starts in the milk ducts. However, her case was rare because the tumor was so large. Stephens and Merry's oncologist, Dr. Elke Friedman at the Virginia Cancer Institute, decided to try a reverse-treatment plan: first chemotherapy to reduce the size of the tumor, then surgery.
The "reverse" method worked. "By shrinking it down, they were able to do a lumpectomy," Merry says. While sometimes a mastectomy is necessary because cancer is in more than one spot in the breast tissue, a lumpectomy allows for just the lump to be removed rather than the entire breast.
Merry's surgery was followed by six weeks of radiation. And then, from June 2009 to July 2010, she had Herceptin infusions through a small device inserted in her upper chest. Developed in the past 10 years, Herceptin targets specific cancer cells. "It is very, very effective," Friedman says. "We use it in women in stage 4 to control it. We use it for women who are in [stages] 1, 2 and 3 to improve the chance of cure."
Herceptin can be used only in women whose cancer tests positive for a cell receptor called HER2/neu, Friedman explains. "Herceptin attaches to the HER2/neu." she says. "It very focally attacks the cancer cells without attacking other cells in the body."
Merry says that she felt very lucky to be able to receive Herceptin, which is extremely expensive — about $70,000 for her year of treatment, she says. Because Herceptin has been shown to reduce the risk of recurrence by almost 50 percent, Friedman thinks it will continue to be available to patients, despite its cost.
Matters of House and Home
Access Now covered all of Merry's doctor, hospital and lab bills — except one. She was charged $450 for a CT scan reading by a pulmonologist who was not routed through of the Access Now network. "What they do is really incredible, and they have worked really hard to have all my other issues taken care of," Merry says of the program, adding that the Access Now staff was extremely patient in dealing with her invoices, including those for weekly and biweekly blood tests for almost 17 months.
The Outpatient Infusion Center at St. Mary's Hospital also matched Merry with a staffer who helped her apply for free treatments through foundations and companies. "There may be a paper I needed to sign here or there, but she applied on my behalf," Merry says. "It has been really incredible."
Although Merry's medical bills were paid, finances were strained at home.
Last summer, the arts community pressed in to help Merry and another cancer patient, Marian Hollowell, through a concert fundraiser at Art6. The event, which Newton organized, was dubbed Tits Up, a phrase Hollowell would say to herself to bolster her morale. The event raised funds that assisted Hollowell in paying her heating bills through the winter and helped Merry make it through several months.
Merry has not been able to work full time because treatments left her with little energy, while Tamoxifen, an estrogen-blocking drug, created tremendous mood swings.
"I thought after the first of [this] year, I would be strong enough to with a clear conscience go in and apply for a full-time job," she says. "Then I developed pneumonia and some sort of lung infection set in and I was really sick."
On top of Merry's physical struggles, her younger sister, Barbara Merry, was diagnosed with breast cancer a month after Merry's diagnosis. In addition, Merry tried to assist her son, who has chronic health problems, by traveling to his home in Newport News to take care of his five children. Her 22-year-old daughter and young grandson also moved in with her; the daughter then lost her job and was temporarily unable to help with living expenses.
Merry's new fears became not being able to make her mortgage payments and losing her home of 25 years.
In February, Allison Andrews, a VCU friend, called to check on Merry, and as they talked, Andrews got an idea. "I just thought, ‘Oh my gosh, we have to do something!' " Andrews says, adding that she had shared studio space with Merry over the years and worked on InLight with her. "I don't know how or why, but a raffle came to mind."
As a Richmond native and former VCU faculty member, Andrews has a wide network in the local arts scene. Newton says the arts community also knows Merry as someone who always throws herself into projects, going above and beyond the call of duty.
Andrews reached out to the VCU community, asking them to donate pieces of art. Andrews says that in a flash, art was donated. She created a website (help4theo.weebly.com), which featured the art, sold raffle tickets and continues to accept contributions on Merry's behalf. The Visual Arts Studio, whose owner, Anne Hart Chay, has also experienced health trials, hosted the raffle, and Newton helped Andrews by bringing a generous spread of food. Hart Chay also donated part of several months' gallery proceeds to Merry last fall.
"The arts community has been very sympathetic to people with this situation, like Theodora's," Newton says. "You are not only feeling bad [physically] but have the mental stress of knowing you have daunting, mounting financial debt. And it is hard for people to recuperate."
The event raised $5,000, enough that Merry could pay her bills through the end of August.
"She is a very giving person and probably has the biggest heart of anybody you might know," Andrews says of Merry. "It was time for her to receive."
The Road Home From Here
Learning to accept help was one of the most healing pieces of her treatment, Merry says. It had always been part of her nature to give, she says with a laugh, admitting that, at times, she is told she gives to a fault. She explains that this is woven into her personality. She was a Girl Scouts leader for 21 years, and, as an artist, she always was compensated for fewer hours than she worked.
For nine years at the Neighborhood School of the Arts on Richmond's North Side, Merry created programs for people who had no funds to repay them. "I know how difficult it is to ask for help and how difficult it is to accept help," she says. "The biggest thing for me is learning to accept help graciously."
Merry learned to call her friends, family or boyfriend for rides to the doctor when the Herceptin made her drowsy. She accepted funds for groceries because she went on an organic produce diet to help reduce the possibility of the cancer's recurrence. In addition, Donna Joyce, a friend of Merry's, launched a web page on the Lotsa Helping Hands network early on, so people could be aware of her needs.
"The real story is about how the community rallied to get us through this," Merry says. Through the recovery process, Merry also turned to the only art form she could manage: poetry. In April 2009, prior to her surgery, Merry marked the 30th anniversary of her mother's death from cancer by writing the poem "Focused on Me for a Change."
"The poem was a way to pinpoint and focus my feelings of what was ahead," Merry says. "I was crying while I wrote."
She wrote other poems and began hosting interactive readings — serving her audience poems from a platter or folding others into paper airplanes and tossing them into the crowd. A portion of her poem reads:
Parasitic growth it is consuming a brew, a concoction consisting of
Coffee, sugar, alcohol, estrogen, me
Hopefully not you or you or you …
Weed it heave it yank it pull it cut it out cull it minimize it separate it eliminate it
Once and for all, for Good!
On July 3, she was center stage for yet another audience, one at the Outpatient Infusion Center at St. Mary's, where she received her last dose of Herceptin.
"They all came in and congratulated me," she says, pointing at her living room ceiling and to the last pink balloon from the bunch she received that day.
Merry will continue to take oral medicine for four more years, but she has completed her cancer treatments. Her drugs are to stave off recurrence.
"When you look back, there is everything for a reason," she says. "Each challenge, each day has been met with either another set of people to come in and help or someone else comes around and helps in another way."
Looking forward, Merry smiles, saying that she and Gary Parsnick, her boyfriend of five years, plan to marry when she is fully healed. And this means health insurance — something Merry has not had in more than a decade.
Parsnick supported her through the entire process and initially offered to marry her, wondering if his insurance would cover the costs of her care.
"It's really not that easy. It does not work that way," Merry says with a laugh. They were engaged, but decided to wait for the end of her treatments to be married. "Hopefully now that the laws are changing, should my boyfriend and I marry, his insurance will have to accept me."
For others in her situation, Merry suggests something she's taken on — a preventive lifestyle that includes a healthy diet, stress reduction and exercise. Also, she encourages others to quickly pursue diagnosis. "If you feel something, get it checked out," she says. "If [a test is] inconclusive ... press for a biopsy. That is the only way to know."
Merry also plans to keep visiting the health-care clinics where she's spent so much time during the last 20 months.
"I will find a way to go down to the Fan Free Clinic and volunteer or go to the hospital and be someone to talk to people," she says. "There is no way I can try to repay everyone, but I can at least try to help others."