Blazing her own trail, with cancer
- Published: July 31, 2008
In her 28-year journey as a person with cancer, Esther Damaser has learned many things. Like many cancer survivors, she learned to not sweat the small stuff, and to spend time doing what she loves, rather than what she feels obligated to do. She treasures time with her family. Humor is its own medicine, Damaser now knows, and her frequent and easy displays of laughter show she learned this lesson well.
But unlike many cancer survivors, Damaser has learned something else as well, a lesson both frightening and empowering. While she has found a person with the expertise, skills and commitment to keep her alive far longer than anyone expected, it is not the person she thought it would be. That person is herself.
“There are no wise people out there to tell me what to do,” Damaser said in a recent interview. “Doctors are nice people but they’re not omniscient. They don’t know as much as I do about what’s good for me. I’ve learned I have to take responsibility for myself.”
Damaser wanted to tell her story, she said, so that others realize they can do the same. She would like to see cancer patients feel more empowered, and wants them to know that they can take an active, life-saving role in fighting for their survival.
Damaser has nothing against doctors. She has found most to be caring, committed and knowledgeable, and marvels that the researchers she calls out of the blue willingly share their expertise with her, a stranger.
But Damaser has guided her own healing largely because there is no one else to do so. She suffers from a rare form of melanoma, ocular melanoma, which, because it is rare, resistant to treatment and always deadly after it has metastasized, tends to attract little research funding. While many doctors treat the disease, it is usually a sideline to their main focus on skin cancer, and thus they tend not to know the latest research on ocular, which is the sort of research that Damaser needs.
Consequently she scours the Internet for the latest relevant research, analyzes that information, and constantly searches for clinical trials that might slow her disease. And if admitted to the trials, she weighs the risks of taking part before deciding to do so.
“It’s a do-it-yourself disease,” she said.
So far, Damaser’s do-it-yourself approach seems remarkably successful. Told in 2002 that she had four to six months to live, she is now stabilized. Most of the time she feels well, although she is often fatigued. But she feels well enough to spend time doing things that give her pleasure.
“I enjoy my yard, enjoy working in it,” she said of the land around the Spillan Road home where she and her husband, Harvey, have lived for decades. “I enjoy my three children and six grandchildren, I enjoy the small satisfactions and pleasures of life. When you think life is endless, you can lose track of this.”
The Damasers moved to Yellow Springs in 1967, when Harvey began teaching literature at Wittenberg University. A psychologist, Esther was director of the Greene County Guidance Center, then director of the psychology department at Children’s Medical Center in Dayton. She also practiced in town and in the area until her retirement in the 1990s.
She loved being a psychologist, Damaser said, and in studying for her profession she learned a skill that later proved invaluable in her struggle with cancer: how to research and to evaluate research.
Damaser’s journey with cancer began in 1980, when she saw an odd spot in her visual field. For more than two years she sought help from opthalmologists, three of whom told her nothing was wrong. The fourth doctor diagnosed cancer.
At the time, the preferred treatment for ocular melanoma was the removal of the eye, but early on Damaser refused to believe that was her only option. Instead, she opted, against her doctor’s advice, for a laser treatment to stop the growth of a tumor in the back of her retina. For eight years after that treatment, the cancer seemed to be gone.
And then it returned. This time, Damaser felt more pressure to take out the eye and again she resisted. And she again hit the books, seeking something, anything, that she could do instead. Damaser found one researcher at the National Institute of Health who thought removal of the eye in ocular melanoma not only wasn’t necessary, but could help spread the disease. At the urging of her husband, Damaser simply picked up the phone and called the NIH researcher, who was happy to share his knowledge. It was not the last time she directly sought out the source of a new approach or treatment.
“To a person, they have been lovely,” Damaser said of the researchers she called. The researcher recommended an experimental treatment, in which a radioactive substance is inserted for several days next to the tumor. The treatment worked and the tumor shrank. The treatment Damaser chose is now considered a mainstream treatment with the same survival rate as removal of the eye.
“I blundered into it without having any of the data that people have now,” she said. “My choice had to be made on instinct.”
But Damaser’s challenges were far from over. Those with ocular melanoma are first treated by eye doctors, and the mentality of specialization shared by many doctors can work against those with her disease, Damaser believes. For instance, after an eye tumor is removed or shrinks, many patients are often not told to get regular scans to make sure the cancer hasn’t metastasized somewhere else.
Even when patients are monitored by oncologists, the doctors tend to suggest yearly checkups. These intervals are too long, Damaser believes, for a disease that has a prognosis of four to nine months once it has metastasized. She also believes that the deadliness of the metastasized melanoma and the lack of good treatment options tend to make doctors resist monitoring it closely.
“Doctors know there’s no treatment for it,” she said. “Perhaps they think, what’s the point?”
On her own initiative, Damaser went to an oncologist who gave her regular CT scans, chest x-rays and liver function tests. In 2002, lesions showed up in her liver, indicating that the cancer had returned.
Damaser faults herself for following the doctor’s advice and not responding more aggressively to the lesions. It wasn’t clear whether the lesions were cancer, and because a biopsy was invasive, the doctor said it made sense to “watch and wait” to see if they would grow.
But the sudden appearance of a black spot on her leg sent Damaser to another oncologist, who diagnosed an unrelated primary skin melanoma, and who also immediately ordered a biopsy that showed the liver lesions to be metastases of the primary, original ocular melanoma. This is the point at which she was diagnosed at Stage IV, and was given four to six months to live.
Rather than despair — or at least, along with despairing — Damaser took action. The world had changed immensely in the years since her cancer first appeared in 1980, and primary medical research was now available on the Internet. Damaser set out to find the most recent information about her disease. Rather than lugging copies of articles home from the library, as she had done in her cancer’s first stages, she now downloaded articles. This process, while equally overwhelming, at least saved stacks of paper.
“I read every abstract, journal article, and conference proceeding in English on ocular melanoma in the previous five years,” she said. “You have to read them yourself to understand.”
On the Internet, Damaser also found something that would prove an emotional and informational lifeline: a listserv of those who suffer from ocular melanoma that allows people from all over the world to share their knowledge, experience and feelings with others who understand. Damaser developed several deep friendships, including one with an Australian man whose wife came to visit Harvey and Esther in Yellow Springs shortly after he died.
From the abstracts, Damaser found the names of more researchers, and she visited doctors in California, New York, and many other places. Some said they had nothing they could do for her, and with others, Damaser felt she knew more about her disease than they did. It was then Damaser found in Philadelphia what she believes to be the sole American physician who specializes in ocular melanoma, and he has remained an invaluable help ever since, she said.
Because the research on the disease is so new, much of it has not even been published on the Internet yet, but is only available at conferences. Both her Columbus and Philadelphia doctors return from conferences with news of new treatments, and she contacts the researchers to find out more.
“The cutting edge research is what I need,” she said.
Many cutting edge treatments are found in clinical drug trials, and since 2003 Damaser has participated in several. She took part in a trial that utilized a drug that provoked the body’s immune system to fight the cancer, and her lesions shrank 80 percent.
However, later tests revealed that the cancer had metastasized to her peritoneum, but because of the deadly nature of the disease, doctors resisted treating it. “A lot of the philosophy is that it’s hopeless, so why put you through it?” she said. But she feels that such choices should be the patient’s, not the doctor’s.
The Philadelphia physician suggested trying a treatment usually used for ovarian cancer, in which the cancer drug Taxol was infused directly into her peritoneum, a treatment never before used for ocular melanoma.
“We were winging it,” Damaser said. “We were making it up.”
Unfortunately, that treatment didn’t work and even more peritoneal metastases were found. Damaser then sought more clinical trials. While taking part in a trial gave her a shot at a cure, it also required taking a risk that whatever treatment she received could render her ineligible for a different trial.
“You always wondered, were you burning your bridges?” she said.
One of the most promising trials had a long waiting list, which gradually shortened as, Damaser realized, the others on the list died. Finally she joined the trial, which used drugs to inhibit the growth of new blood vessels that fed the cancer. However, the medications pushed Damaser’s blood pressure up into an unhealthy range, so she was forced to drop out.
Most recently, Damaser has joined a trial recommended by her Philadelphia doctor that utilizes a newer version of drugs that inhibit the growth of new blood vessels, thus, theoretically depriving the cancer of nutrients. This time the blood pressure problem is more controllable, and the cancer has been stable for 16 months.
The process of seeking new treatments and trials, taking risks, then finding if those risks have added time to her life or taken it away has sometimes been wrenching, Damaser says. And while many people find that facing a life-threatening illness leads them to become more religious, she has not taken that route. A lifelong atheist, Damaser found she hasn’t followed the maxim that “there are no atheists in foxholes” — those who find God while in a life-threatening situation.
“I’m in a foxhole here,” she said. “I’m facing my imminent demise. And I’m still an atheist. Religion gives me no comfort.”
What Damaser feels more strongly than ever, however, is the value and sanctity of human life. Her caring for people has led Damaser to seek out others with her disease. She is concerned that she has heard of several people in Yellow Springs who have or have had ocular melanoma, a disease that is supposed to be diagnosed yearly in only one in every 200,000 people. The handful of people she knows in town with the disease seems to be a percentage of the population that is about 10 times what it should be, she said.
She might be of help to others who are struggling with ocular melanoma, Damaser believes, and she encourages people to contact her at firstname.lastname@example.org. At the least, she would like to hear their stories and share hers with them. Perhaps, in sharing their challenges, their joys and their struggles, they can help each other live better, she believes.
“What’s important is the here and now,” she said, “and making life the best it can be.”