They know a lot in Colorado's rugged San Luis Valley. They know how to coax a living out of inhospitable land. They know the rituals of the Catholic faith that has been the underpinning of the area's culture since the first settlers arrived.
And they know cancer.
For as long as anyone can remember, women, and many men, have been dying young of cancers that seemed to course through some families' bloodlines as surely as brown eyes or broad shoulders are passed along in others. What no one knew was why.
Then, about a decade ago, breakthroughs in science, the unraveling of history and pure coincidence converged to offer an answer. Many of the descendants of the devoutly Catholic families who settled this valley hundreds of years ago carry an inherited genetic mutation that is linked to cancer. That gene mutation is found, primarily, among Jewish families.
The discovery brought attention to the area. Now, the nationwide release of a book that documents the valley's hidden history promises to renew and expand that attention, and, many hope, finally bring acceptance and change to the San Luis Valley.
Awareness part of battle
Last week, Jeff Wheelwright, the author of "The Wandering Gene and the Indian Princess," sat in a Park Hill dining room with Teresa Castellano and Lisa Mullineaux, two of the genetic counselors who helped uncover the mutation's link to valley families, and members of Colorado Ovarian Cancer Alliance as well as several women whose roots in the valley go back hundreds of years.
Between bites of salad and miso salmon sandwiches, the women introduced themselves. For many, "cancer survivor" was part of that introduction. All ticked off a list of relatives — sisters, cousins, aunts, mothers, fathers — who had fought, or died of, cancer.
"I'm a seven-year ovarian cancer survivor, " said Priscilla Martinez, before launching into a stunningly long list of family members affected by cancer.
Shonnie Pochardt, whose life and death is highlighted in Wheelwright's book, discovered a lump in her breast years before she was diagnosed. But, as her family told The Denver Post in 2003, her doctor told her she was too young to have breast cancer.
Since the genetic mutation has been documented, the awareness among physicians has grown, said Angela Bedard, a genetic counselor and head of the oncology department at the San Luis Valley Regional Medical Center in Alamosa.
"The knowledge is growing and women at younger ages are being sent for screening," Bedard said.
Now, it is often the women themselves who aren't acknowledging the risks.
"We still see women of the San Luis Valley being diagnosed at later stages," in their disease, Bedard said. "These women are just not doing the screening at rates that are needed."
All women need mamograms and cancer screening, but even among those whose family history increases their risk, there is resistance, she said.
Quirk of heritage
Cost is a factor. The San Luis Valley has some of the state's most intractable poverty and one of its highest rates of people without insurance.
But cost isn't the only barrier.
"We're still very superstitious," Priscilla Martinez said last week, as the talk turned to why more women aren't being screened.
For centuries this rugged region along the New Mexico border has been home to descendants of Spanish immigrants who came up from Mexico and settled before borders defined states or even nations. For generations, those descendants ranched and farmed in relative isolation and they marked this valley with the shrines and icons of their Catholic faith.
But woven into that faith were rituals no Catholic would recognize: candles lit on Friday nights, an avoidance of pork.
At the luncheon, Catherine Benavidez Clayton recalled putting pebbles on loved ones' gravestones.
"That's totally a Jewish tradition," said her hostess, Katie Reinisch, who was raised in the Jewish faith.
As the Inquisition raged through Europe, Jews were expelled from Spain. Many who fled made their way across the Atlantic, to Mexico, and eventually southern Colorado. Fearing persecution, they pretended to be Catholic for generations, until they weren't pretending anymore.
Now, Catholicism is not just a faith. "It's the heart of their religious identity," Judith Martinez said.
While many valley families accept the possibility of Jewish heritage as in interesting quirk of history, for others, it threatens their identity.
That may be one reason few are being tested for the mutation. And, though federal law prohibits it, many fear discrimination based on the results of such tests.
Even Marguerite Salazar, the longtime head of Valley Wide Health Services who is now is regional director for the federal Health and Human Services department, can't completely push aside that fear.
"It's very real," Salazar said.
There are other fears at work as well. Priscilla Martinez said she had scheduled a genetic test but her family talked her out of it. "They said, 'Why do you want to go looking for trouble?' "
In three months, Bedard will leave the San Luis Valley hospital and relocate to Canada. That means the nearest genetic counselor will be in Colorado Springs.
A state grant to bring testing and genetic counseling to the valley's rural corners was canceled in 2009, a victim of the crashing economy, said Kate Crow, a Colorado Springs genetic counselor who would have administered some of those tests.
Despite such setbacks, Bedard said she's confident the progress that has been made won't be lost.
The women at the luncheon said they didn't intend to let it be.
"I'm trying to educate my family members," said Judith Martinez.
Karen Augé: 303-954-1733 or firstname.lastname@example.org