“If you were saved it is because you have something else to do in this world.”
– Artist Mary Cassatt to Theodore Pope, survivor of the doomed ship, Lusitania.
Autumn in Albuquerque is a melange of weather. Some years, snow not only makes an appearance on the tops of the surrounding, pink granite peaks of the Sandia Mountains, but creeps down toward the city as well. Other years, glorious sun and mild temperatures endure long past Halloween. The landscape literally glows from the golden leaves of the city’s ubiquitous aspen.
Late October, 1986, fell into the latter category. Daytime temperatures hovered in the mid 60’s, while the mild evenings encouraged gatherings around outdoor chiminea fireplaces. The distinctive odor of their burning piñon wood wafted through the air, announcing the change of seasons. The smell, faintly reminiscent of some kind of incense, would certainly have been noticed by the group of visitors arriving at the Barcelona Court Hotel on Friday, October 24th.
The group consisted of 22 individuals from eleven different states. They ranged in age from 28 to 63. Doctors, nurses, lawyers, authors, business people – they could not have been a more diverse group, but for one common thread. Every one had a connection to cancer.
While researchers of the day were arduously seeking a cure, they had scarcely moved the needle since President Nixon declared his “War on Cancer” fifteen years earlier in 1971. In fact, up until a few years earlier, some physicians were continuing the practice of not even informing their patients of a cancer diagnosis. This terrifying scourge occupied the same space on the fear and loathing scale as venereal disease had during the first half of the twentieth century.
Cancer evoked specters of slow and agonizing demise, spouseless mourners and parentless children. Cancer “victims” existed in abject isolation. The very word aroused terror and reeked of death. Consequently, it was called the “Big C,” to be spoken of in hushed tones. And it was never discussed in public. The notion of hairless, skeletal, surgery-maimed individuals was too much for people to think about. So they didn’t.
Most of the public was completely uneducated about cancer’s causes, risk factors, or ancestry. But the public had no qualms about buying into the myths. Cancer was a certain death sentence. Cancer was contagious. Cancer “victims,” a puny, sickly lot, were a drain on society.
The new arrivals in Albuquerque that fall evening knew all about the fear and phobias enshrouding cancer. More than half of them had met the disease head on at some point in their lives. The rest had either watched a loved one face the disease head on, or had devoted their lives to cancer-related work. They had assembled not to cure the disease, but to begin curing the myths.
As if battling the disease wasn’t bad enough, survivors also battled against unseen and unexpected demons. In 1986, nearly half of all cancer diagnoses ended a life. But the half who didn’t die, including those assembling in Albuquerque, sought to live vibrant lives, to help others fight against those demons, and to feel free to discuss out loud their challenges and their triumphs.
They wanted to shake off the cloud of discrimination against them simply because they had fallen ill. They hoped to illuminate the need to heal psychologically from cancer, overcoming issues of poor self-image and post-traumatic stress syndrome (PTSD). They aspired to encourage honest communication between themselves and their doctors, and to address their challenges in relationships, intimacy and fertility. They were willing to call out corporations, industries, and even the United States government, any entity knowingly poisoning the population and sowing cancer’s seeds. Most of all, they wanted to shed a light of hope for those who were newly diagnosed, to be true representations of the valuable life they could, and should, live after cancer.
The driving force behind the weekend long assembly was a dynamo named Catherine Logan, a woman well acquainted with social change. She was in Mississippi in 1964 during the Civil Rights Movement, and was even tossed in jail for her beliefs in equality. She later graduated from the University of Illinois with a degree in sociology and psychology, and spent time in the Peace Corps, before becoming a social worker in Chicago. After seven years she left that rather staid position to pursue her true love: jewelry making in the Native American arts mecca of Albuquerque.
And then the unthinkable happened. Catherine was one of the 16,000 American women diagnosed with invasive cervical cancer in 1979. The treatment was a complete hysterectomy, followed by radiation. For an unwed woman of 34, that not only shut the door on any hopes of childbearing, but enveloped her with a sense of being unworthy of marriage as well.
While working through the shock, disappointment and anger of her diagnosis and treatment, Catherine developed friendships with several other women who had survived cancer. Together, in 1983, they founded an organization, Living Through Cancer. LTC, as it came to be called, had two main goals: to be a safe place for survivors to share fears and experiences, and to serve as a local clearinghouse for the latest information on cancer.
It was in keeping up with the latter mission that Catherine first heard of Dr. Fitzhugh Mullen. Fitz had trained as a pediatrician in the Bronx. Like Catherine, Fitz, too, had experience is social reform movements, his being in the health care arena. In 1972, he had been commissioned in the U.S. Public Health Service and practiced in New Mexico as one of the organization’s first physicians in the National Health Service Corps. In 1975, at the age of 32, he had taken a random chest x-ray of himself at his Santa Fe hospital. The x-ray revealed a cauliflower shaped tumor that proved to be a solid, cancerous seminoma.
What should have been a routine chest surgery devolved into a nightmare of complications from which Fitz nearly died. His recovery took a full two years. Having always been an eloquent writer, Fitz detailed his cancer journey in a 1983 book, Vital Signs: A Young Doctor’s Struggle with Cancer. And since he had a healthy Rolodex of medical contacts from coast to coast, he embarked on a national speaking tour to promote his book.
After having moved to Washington D.C., Fitz authored a thought-provoking piece for the July 1985 New England Journal of Medicine entitled “The Seasons of Survival.” In it, he likened survivorship after cancer to the seasons of the year: progressing from the newness and uncertainty of spring through the seasoned acceptance of winter. Describing survivorship, he added this poignant metaphor: “It is as if we have invented sophisticated techniques to save people from drowning, but once they have been pulled from the water, we leave them on the dock to cough and splutter on their own in the belief that we have done all that we can.” For anyone remotely interested in cancer survivorship, it was eye opening. For someone with a passion for the subject, someone like Catherine Logan, it was a battle cry.
Catherine was waiting for Fitz in the vestibule outside one of his speaking engagements. Her appearance was a follow up to the many letters she had sent him previously. They were on the same wave length about survivorship, she told him. Cancer survivors were growing in number and desperately needed one another to forge through the stages of their new lives after their disease. She told him about LTC and the other grassroots survivorship organizations across the country about which she was accumulating information. With passion and persuasion, she pronounced that they needed to get organized, to form a coalition. And to accomplish that, she needed him, and his considerable Rolodex of contacts.
Fitz had no choice but to agree, first on the belief that he figured she would continue to stalk him until he said yes. But more importantly, on the belief that she was right. Slowly, survivor numbers were growing, yet their physical and emotional needs were completely closeted. He was in.
Fitz was also on the advisory board of an employment rights project, housed within a law office in Philadelphia. An arm of the project, called “Foundation for Dignity,” was being driven by a young attorney named Barbara Hoffman. Barbara’s work was in the area of cancer survivors’ rights. She, too, had beaten the disease, having been diagnosed with Hodgkin’s Lymphoma when she was 15. An intense radiation treatment for her disease was in development at the time, and Barbara underwent twelve excruciating sessions before being declared cancer free.
Her father, a physician, had warned her about keeping her cancer diagnosis to herself, a warning she diligently heeded. And as a young lawyer, she saw why. Survivors returned to jobs after treatment, only to learn they had been terminated. They were frequently denied insurance coverage. They weren’t allowed to join the military. They were losing their homes and their families.
While those stories had been the impetus for her work on the Foundation for Dignity, it was an event she attended, one at which Fitz was the keynote speaker, that solidified her interest in playing a bigger role in supporting survivors. And unbeknownst to her, even before that event, Barbara’s name was already on a card in Fitz’s Rolodex.
From that treasure trove of who’s who in the cancer world, Catherine created a mailing list She sent a total of 83 letters to cancer organizations, researchers and individuals – anyone who evidenced a remote interest in the area of survivorship. She detailed their joint vision – having convinced Fitz that “joint” was the only way to word it – to create a network of like-minded people. In her letter, recipients were asked who they served, what they did, whether they would be interested in being a part of a national coalition, and what they’d like to see the coalition do.
Then – as now – survivorship organizations were protective of their turf, fearing the loss of stakeholders to newer, shinier programs. It was an absurd notion in an industry whose alleged mission was to support survivors. Still, 31 responded affirmatively to Catherine’s letter, and 22 of them had agreed to gather that October to investigate this new vision for cancer survivorship. When Barbara received Catherine’s August 15th invitation to come to Albuquerque, she accepted without hesitation and sent a check for $144.70, to cover the cost of the meeting and two nights at the Barcelona Court.
New Mexico is known for expansive, high desert vistas, and rich Hispanic and Native American cultures. Its capital city, Santa Fe, is famous for upscale museums and galleries, not to mention frequent celebrity sightings. Albuquerque, however, was not nearly as celebrated as a tourist destination. Its greatest claim to fame was a Hot Air Balloon Fiesta. Its 14th annual installment had just occurred a few weeks earlier.
Nor was the city a research or healthcare mecca, having no prestigious medical school or acclaimed hospitals. The fact that this group, including accomplished and well-known individuals from around the country, was willing to make the trek to such an unlikely destination speaks volumes about both the subject matter – survivorship – and the respect held for both Fitz and Catherine.
A few weeks before the meeting, a Phoenix nurse who had been invited to attend learned she had a scheduling conflict. She contacted an acquaintance, another nurse who had worked with cancer patients and in cancer research at the University of Arizona Medical Center in Tucson. Explaining that she was unable to go to Albuquerque, she persuaded the reluctant Tucson nurse to make the trip to New Mexico.
So on Friday morning, October 24, Susie Leigh left Tucson in her Toyota pick up truck headed for Albuquerque. Her interest was piqued at what might be waiting at the end of her 450 mile trek. In addition to being a nurse, she was also one of the nearly five million Americans in 1986 who had fought and survived cancer. Her diagnosis had come in 1972: the virulent, rare, and often fatal Hodgkin’s Lymphoma. It had been 14 years since that diagnosis, and within the Albuquerque group, that would give her the unique title of being the most senior in terms of survivorship. But there was much more about Susie Leigh that made her unique.
In 1971, she had done a twelve month tour as a combat nurse in the Mekong Delta on the front lines of the Vietnam War. Diagnosed just eight months after her return, the brand new type of Hodgkin’s treatment she received was showing impressive survival rates. While the punishing treatment regimen made her a chemotherapy pioneer, its toxicity had nearly killed her. It beat her up in other ways, too.
The chemo had caused unexpected long-term side effects, and the ensuing radiation would be responsible for as yet undiagnosed cancers and cardiac issues. Her body felt foreign, and the treatment assault made her feel unfeminine and unworthy. She had fallen into a deep depression and, being introverted by nature, had isolated herself from social interaction. None of these reactions were unique. All survivors knew that their cancer hadn’t ended when their treatment had. But each thought those reactions were their own solitary shortcomings, and never anything to be shared publicly.
Ironically, Susie’s disease had motivated her to become one of the country’s first oncology nurses, giving her the advantage of experiencing cancer from both sides of the hospital bed, and make her a pioneer for a second time. This weekend in Albuquerque, in which her participation had been totally accidental, was about to make her a pioneer for a third, and probably most important, time.
In her 39 years of life, Susie had fought in military and medical battles. She was a warrior and a survivor in every sense of the word. But no one in her world would have ever guessed the part she was about to play in the history of the war on cancer. What lay ahead would not only change her life, it would change the lives of millions of cancer survivors far into the future.