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Part medical history, part inspirational biography, this is the story of a social movement that continues to improve life for millions.

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On December 23, 1971, a beleaguered President Richard Nixon declared war on cancer by signing the National Cancer Act. Research ignited, and the world’s most feared disease was suddenly survivable. Yet millions with a cancer history remained in the shadows: shunned, discriminated against, forgotten.

A group of 23 men and women – all with a personal connection to cancer –  came together in 1986 for a weekend summit with one goal: not to cure the disease, but to destroy its myths. The creation of the National Coalition for Cancer Survivorship (NCCS) that weekend changed everything for American cancer survivors. Their lesson still rings true: in order to improve the future, we must learn from the past.

From this grassroots beginnings, the determination of the NCCS founders and the growing numbers of supporters brought their cause into sharp national focus. They succeeded in banning discrimination, ushered in survivor healthcare reform, and provided researchers with invaluable knowledge about long-term treatment impacts.

From Shadows to Life: A Biography of the Cancer Survivorship Movement is part medical history, part inspirational biography. It is the story of a social movement that continues to improve life for millions around the world. 

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Reading FROM SHADOWS TO LIFE can help the transition to prevention and healing.
Bernie Siegel, MD
author of the New York Times bestsellers LOVE, MEDICINE & MIRACLES and FAITH, HOPE & HEALING

PROLOGUE

“If you were saved it is because you have something else to do in this world.”
—Artist Mary Cassatt to Theodate Pope Riddle, survivor of the doomed ship Lusitania

 

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. But its most populous city is Albuquerque. In October, 1986, however, despite being bigger than Santa Fe by a factor of ten, Albuquerque’s greatest claim to fame was the Hot Air Balloon Fiesta; the 14th annual installment had just occurred a few weeks earlier. 

Autumn in Albuquerque is a mélange 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.

That late October, 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. Reminiscent of some kind of incense, the smell would certainly have been noticed by the group of visitors arriving at the Barcelona Court Hotel on Friday, October 24th.

The group could not have been more diverse. It consisted of twenty-three individuals from eleven different states and was made up of doctors, nurses, lawyers, authors, and business people, ranging in age from 28 to 63. But they all had one thing in common—everyone 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 fact, up until a few years ago, 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 that venereal disease had during the first half of the twentieth century. 

It was called the “Big C,” and was spoken of in hushed tones. And it was almost never discussed in public. Cancer evoked specters of a 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. 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. 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 and 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 unseen and unexpected demons. In 1986, nearly half of all cancer diagnoses were fatal. 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, even the United States government—any entity knowingly poisoning the population and sowing cancer 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.

As she worked 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: to be a safe place for people with a cancer history to share fears and experiences, and to serve as a local clearinghouse for the latest information on cancer.

And this is how 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 health care. In 1972, he had been commissioned in the U.S. Public Health Service and practiced in New Mexico as one of the first physicians in the National Health Service Corps. Three years later, at the age of 32, he had taken a 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 he 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, like Catherine Logan, it was a battle cry.

In 1985, 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. “Because of the 1971 National Cancer Act, which was feeding unprecedented sums into research, cancer survivors 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 agreed, partly because he believed she would continue to stalk him until he said yes, but more importantly, because he knew she was right. Despite cancer survivor numbers growing, their physical and emotional needs were completely closeted. 

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 life post-cancer. 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, of the 83 letters she sent out, 31 responded affirmatively, and twenty-two of them agreed to gather that October to investigate this new vision for life beyond cancer. 

Albuquerque was not known as a research or healthcare mecca. It had 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 who agreed to go in her place. 

So on Friday morning, October 24th, 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 an oncology nurse, she was also one of the nearly five million Americans in 1986 who had fought and survived cancer. 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 1972, eight months after her return from a twelve-month tour of duty as an Army nurse in the Vietnam War, she had been diagnosed with the virulent, rare, and often fatal Hodgkin’s Disease (now known as Hodgkin’s Lymphoma). She had received a brand new type of treatment that was showing impressive survival rates. Nevertheless, while the punishing treatment regimen made her a chemotherapy pioneer, its toxicity was debilitating. 

Susie’s body had soon begun to feel like a foreign thing. The treatment was an assault that made her feel unfeminine and damaged. She had fallen into a deep depression and, being introverted by nature, had isolated herself from other people. Her chemo caused long-term side effects, and the ensuing radiation would be responsible ultimately 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 not something to be shared with others.

At 39, 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 what lay ahead would not only change her life, it would change the lives of millions of people battling cancer far into the future. 

FROM SHADOWS TO LIFE tells the stories of the heroic individuals who founded the survivorship movement. Medicine has much to learn from their advocacy.
Damon Tweedy, MD
author of the New York Times bestseller BLACK MAN IN A WHITE COAT

More advance praise:

“We can’t fully understand how to tackle the future of cancer advocacy, research and development and eradication without understanding the rich history of previous generations. Judith Pearson’s From Shadows to Life has done that expertly, shaping the story of cancer pioneers into a narrative that makes it a compelling read regardless of your personal connection to cancer. Particularly stirring is the section devoted to breast cancer, which chronicles and honors the everyday patients and boldfaced names whose refusal to back down transformed the way doctors treated not only the cancer in a woman’s body, but the woman herself.”
–Ali Rogin, Foreign Affairs Producer, PBS NewsHour, author of Beat Breast Cancer Like a Boss

“I love it! It’s history, biography, science, intrigue, drama, all wrapped into one. Reading it brought back many warm memories of people, places and events that had such an impact on my life and who I am today. After reading Emperor of All Maladies I was left thinking but what about PEOPLE who actually had cancer? This is that book. It’s about cancer and PEOPLE, and for me that is more interesting.”
– Brad Zebrack, PhD, MSW, MPH, FAPOS, Professor, University of Michigan School of Social Work

“From Shadows To Life is an excellent book. Judy takes the reader through each decade’s political climate and social standing in the fight for recognition of survivorship as a part of the cancer continuum  We highly recommend this great read!”
–Tamara Green, LCSW and David Dachinger, authors of the international best seller Live Calm With Cancer

“Judy Pearson masterfully zooms in for the personal stories and zooms out for the milestones—scientific, political, social, and cultural—that drove the history of cancer survivorship.  Riveting prose shows how we got to today and inspires hope for a better tomorrow.”
— Wendy S. Harpham, MD, regular columnist, Oncology Times, and author, Healing Hope: Through and Beyond Cancer

“As an oncology nurse since 1975, reading this book was like walking down memory lane. The storytelling is so evocative of the times you were recounting. This book should be of interest to anyone who has an interest in cancer, cancer care and the history of cancer. It would be a nice companion book to The Emperor of All Maladies.”
– Deborah K. Mayer, PhD, RN, AOCN, FAAN, Frances Hill Fox Distinguished Professor School of Nursing, University of North Carolina, Director of Cancer Survivorship Lineberger Comprehensive Cancer Center

“Judith Pearson gives life and voice to what has been an astonishing revolution within the world of cancer. . . From Shadows to Life reminds us of the powerful impact of advocacy in any successful movement, whether for self or others. Imbued with hope, this previously untold history of the cancer survivorship movement should be recommended reading for all cancer survivors and those who care for and about them.”
— Julia H. Rowland, PhD, FAPOS, Senior Strategic Advisor at Smith Center for Healing and the Arts and former Director, NCI Office of Cancer Survivorship

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