"Just a Word... Not a Sentence"
Joy Hopkins-Hausman updates her experience with cancer.
by Andrea Barrist Stern
The most salient thing to be said about the newly released sequel to Cancer: Just a Word...Not a Sentence, a 110-minute videotape documenting Woodstock resident Joy Hopkins-Hausman's encounter with breast cancer 14 years ago, is that there is a sequel.
More than ever before, cancer patients are learning there is good reason for hope. New conventional treatments, a dizzying choice of complementary and alternative approaches, and earlier detection are leading to complete cures or enabling people to live full lives with cancer. Much of what was once unconventional has become mainstream. New advances are constantly being announced in medical journals and by the media.
In 1986, three months after the death of her sister from breast cancer, Hopkins-Hausman launched a video project in her sister's memory intended to educate women about the disease. The loss had prompted Hopkins-Hausman to have a mammogram and the test indicated potential irregularities. With local videographer Tobe Carey in tow, Hopkins-Hausman and her husband, Bob Hausman, met with noted surgeon Bernie Siegel, the best-selling author of Love, Medicine & Miracles, who confirmed Hopkins-Hausman's diagnosis even as the tape was running. Carey convinced her to shift the focus of the video from Siegel's work to a documentary about her own healing.
Nearly eight and a half million Americans alive today have a history of one or more kinds of cancer, according to the American Cancer Society. Some are survivors, a term used to indicate the disease has been eradicated. Others are still undergoing treatment. This year, the organization expects one million new cases of cancer to be detected in the U.S. population. Half these individuals will die. But the other half will live.
"People have asked me why I'm still alive, and I don't know," Hopkins-Hausman says. She combined conventional treatments, including a mastectomy, breast reconstruction and chemotherapy, with complementary approaches like support group therapy, acupuncture, yoga, nutritional counseling, vitamin therapy, meditation, and basic laughter. "I've done some things that were good for me and some things that were not in my best interests, but I'm doing the best I can do. And I think the best we can do is to look at our own situation, evaluate what's available, take advantage of as much as possible given our circumstances and reach out for support."
Nationwide, one in eight women can expect to get breast cancer in her lifetime. About one-third of women with breast cancer in Ulster County died during the period from 1993 through 1997, according to the New York State Department of Health (DOH).
In Ulster County, roughly 106 of every 100,000 women developed breast cancer from 1993 through 1997, according to the DOH. The incidence is virtually the same in Ulster County as it was statewide during this period. (The statewide figure excludes New York City.) Breast cancer also strikes a small number of men each year.
A higher proportion of women died from the disease in Ulster County than they did statewide during these years. He mortality rate in Ulster County was 36.9 women per 100,000 women as compared with 27.2 women statewide. (Ulster Countyís comparatively small population allows for a statistical variation of plus or minus of 5.3%, which means the local mortality figure may be more in line with that of the state.
There are ample resources for Ulster County residents with cancer (see sidebar story). Benedictine Hospital in Kingston and Vassar Brothers Hospital in Poughkeepsie have both been designated community cancer centers by the American College of Physicians and Surgeons, based on the level of cancer-related efforts there, according to Barbara Sarah, coordinator of the oncology support program at Benedictine Hospital. Situated in the hospital's Fern Feldman Anolick Breast Center, the program is hospital-wide, providing services for men, women and children facing all forms of cancer. Many of the programs are open to families and friends of patients and survivors as well.
(This story is the first segment in what is intended as an ongoing series profiling cancer survivors and patients in our region. A diagnosis of cancer can be overwhelming, particularly in a health-care environment that has become impersonal and frequently feels adversarial. These articles are not intended to promote one approach over another. They are meant to make resources throughout the region and beyond available so that nothing is overlooked as Hudson Valley residents go about healing themselves. If, at times, strikingly unorthodox methods are highlighted, it is because no one can say with certainty which of today's experimental treatments will, by tomorrow, have proven effective.)
When Hopkins-Hausman was first diagnosed with breast cancer 14 years ago, many of the treatments she utilized were considered radical and associated largely with a fringe population. Today, they are widely used.
As with many individuals who have looked cancer squarely in the face, her life has changed markedly. The psychotherapist and cancer support group facilitator has developed new priorities, discarding those aspects of her life that felt burdensome in favor of others that were more fulfilling. Long-forgotten dreams, including the pursuit of her artwork, were resurrected. Relieving herself of considerable emotional and psychological baggage, she has recently begun a new spiritual exploration.
No one would wish to have cancer, but in her life as in the lives of many others the disease became a wake-up call and an opportunity. Fourteen years later, Hopkins-Hausman will be the first to tell you she is better off today for having been struck by the disease.
Hopkins-Hausman has watched her two young children grow into adults. She has developed a successful psychotherapy practice for cancer patients and survivors. She conducts an annual workshop each fall for individuals with a history of cancer at the Omega Institute in Rhinebeck and leads similar workshops elsewhere. She also leads several cancer support groups throughout the region.
"I'm a work in progress," says Hopkins-Hausman, 52. "One of the reasons I continue to do cancer support groups and to do the work I do is because I have not had a recurrence, and I am very appreciative. When I work with people who are dealing with life-threatening illnesses, it helps to keep me present in my life. The people I am working with are constantly evaluating whether what they are doing is healing their minds, bodies and spirits. I have had the great good fortune to witness this and my work is an opportunity to pass on what I have learned."
Curing and healing are very different terms in the realm of cancer survivorship. Healing, an inner process through which a person becomes whole, is a necessary part of any cure, believes Hopkins-Hausman. It may take place even when a cure proves impossible. The scientific effect of the healing process on life-extension has not been definitively proven, but psychotherapists like Hopkins-Hausman can attest, anecdotally, to its clinical effect on transforming the quality of the lives of the patients with whom she works. More important, she can verify the impact on her own life.
The initial period following a diagnosis of cancer can be overwhelming as patients attempt to cope with the news, find a physician and medical team, and sort out the treatments that may be best for them. "There is not just one way to do it," she says. "We learn from others as we gather information and we need to spend time in solitude to figure out what is right for us."
Like any life-threatening illness, cancer can be an opportunity for individuals to discard the things in their lives that are not working, she believes. Becoming fully involved in one's healing enables the individual to be present. "In doing that, instead of feeling isolated, we can feel connected to the human spirit that is in each of us," she says. "We are all in this together, this wonderful, difficult, lovely, heart-wrenching, challenging thing we call life."
A positive outlook is key, but it is also healthy to explore one's fears and concerns so they can be transformed into something positive, Hopkins-Hausman believes. Real healing may have little to do with the disease's outcome. For real healing to take place, people must learn "to heal into their deaths" as well as in their lives, she says.
"Some people I have worked with and loved have died but they have healed their lives in the process," says Hopkins-Hausman. "I know other people who are still alive who lead pretty chaotic lives and are unfulfilled. I feel sadder for them than the ones who have died. Heal yourself and do what you need to do for yourself, and the rest will unfold."
The most important part of healing is learning to love oneself completely and authentically, believes Hopkins-Hausman. Support groups are a critical element in this recovery and a cornerstone of the healing process when coping with cancer, she says. Ample scientific evidence exists to indicate that individuals with cancer who participate in support groups live longer than their counterparts who do not. They also enjoy a higher quality of life, she notes.
With so much often contradictory information now available over the Internet, in books, through organizations and via other individuals with cancer, deciding which course of treatment to pursue can be disconcerting, particularly at a time when one is already feeling vulnerable. "Only you can make the decision about what is right for you," she says. "Gather a team who will be compatible with your view and if you have a doctor who strongly disagrees with your approach, it may be best to find another doctor. That can be difficult but not impossible."
In today's health-care environment, cost will be a huge problem for most people. Some insurance companies are starting to cover certain complementary therapies like medical massage and acupuncture. But the financial burden to the patient can be staggering. "We need to influence our legislators if we have a point of view about this and I think we are moving in that direction," she says.
One of the most essential elements of the healing process involves the creation of a support network around oneself, Hopkins-Hausman advises. In her case, her husband of 25 years, Bob, was both available and experienced. Hausman, also a psychotherapist, is co-director of the Woodstock Therapy Center with his wife. He says that support-givers can play multiple roles.
After the initial diagnosis, Bob Hausman advises, patients need a point person to help screen out even the best intentions of the outside world. During this period, they may not want to find themselves having to answer the same questions repeatedly. Listen to and be sensitive to the roller coaster of emotions the individual is experiencing and become informed, he advises. Help sort out the overwhelming amount of information that comes in. It is too much for one person to absorb.
Reassurance is essential, "not that everything will work out okay because you can't know that, but that you will always be there for the person," believes Hausman. "As an individual becomes debilitated, he or she can turn from a high-functioning person into a patient and this can be sudden," he says. Picking up some of the responsibilities the patient normally has and helping with the day-to-day necessities of medical appointments and treatments are obvious but critical.
"The person never returns to where they were even if they fully recover, and you have to recognize a shift is happening. This is not necessarily bad," he says. "It could be a good shift. Our relationship got stronger and deeper throughout her illness. We talked a lot and listened to each other in a way we hadn't before."
Cancer: Just a Word... Not a Sentence follows Hopkins-Hausman into doctor's offices, while she is undergoing reconstructive surgery, during support groups, and exploring complementary therapies. She never shuts off the camera, not even while she is being examined, bare-breasted, in preparation for the reconstructive surgery she is not certain, in retrospect, she would undergo today. Viewers who haven't met her in person will come away from the video with a sense they know her more deeply than many people who have been in their lives for years. Hopkins-Hausman's courage is inspiring. The points she shares constitute the cornerstones of the healing process.
"We don't know what causes cancer, and we have to be humble enough to realize that," she says. "At the same time, we can look at it as an opportunity for renewal and growth. I don't pretend to say that's easy. It's a long process and it's one with which I'm still involved."
Copies of Cancer: Just a word... Not a Sentence are available from Willow Mixed Media, P.O. Box 194, Glenford, NY 12433; through the company's website, willowmixedmedia.org or by contacting Tobe Carey, the video's producer and director, at email@example.com.
Copies cost $19.95 for individuals.
The price for public performance, education, and group use is $69.95.
Hopkins-Hausman can be reached directly at the Woodstock Therapy Center,
(845) 679-5511. ++
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