“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 23 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 a singular 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. The 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 and were a drain on society. The very word aroused terror and reeked of death. Worst of all, cancer was thought to be contagious. 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. 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 it down, 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 cancer wasn’t bad enough, patients 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 degrees in sociology and psychology, and spent time in the Peace Corps, before becoming a community organizer in Chicago. After seven years she left the Windy City 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 Living Through Cancer. LTC, as it came to be called, had two main goals: as a safe place for people living with a cancer history 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 Mullan. Fitz had trained as a pediatrician in the Bronx. Like Catherine, Fitz, too, had experience in 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. Three years later, 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 life after cancer to the seasons of the year: progressing from the newness and uncertainty of spring through the seasoned acceptance of winter. For anyone remotely interested in life after cancer, 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 a letter she had sent him previously. They were on the same wavelength about life after cancer, she told him. Cancer patients were growing in number and desperately needed one another to forge through the stages of their new lives. She told him about LTC and the other grassroots cancer support groups 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, cancer patient numbers were growing, yet their physical and emotional needs were completely closeted. He was in.
With Fitz’s treasure trove of who’s who in the cancer world, Catherine’s mailing list grew. 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 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 patients. Still, 31 responded affirmatively to Catherine’s letter, and 22 of them had agreed to gather that October to investigate this new vision for life beyond cancer.
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 the Hot Air Balloon Fiesta; the 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 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 Tucson nurse to make the trip.
So on Friday morning, October 24, Susie Leigh headed for New Mexico in her white, 1982 Toyota 4-wheel drive pick-up truck. 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 Disease (now known as 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 life after cancer. But there was much more about Susie Leigh that made her unique.
In 1971, she had returned from a twelve-month tour of duty as an Army nurse in 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 was debilitating. It beat her up in other ways, too.
Susie’s 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. Her chemo eventually caused long-term side effects, and the ensuing radiation would be responsible for as yet undiagnosed cancers and cardiac issues. None of these reactions or conditions were unusual. All those treated for cancer knew that the disease hadn’t really ended when their treatment had. But each thought their situation was the result of their own shortcomings, and never anything to be shared publicly.
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. Her 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. 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 people battling cancer far into the future.