The brave and the few
The cervical cancer/HPV world needs a few more Betty Ford equivalents – people willing to carve through stigma, shame and silence and advocate for those with cervical and other HPV-related cancers in the same fearless way that the former First Lady went to bat for those with breast cancer. Oh, you can already hear the naysayers: Breast cancer is different, they might say, because it’s not caused by human sexual behavior and therefore it’s not anyone’s “fault.” What a cruel and uninformed distinction to make! And what a moral quandary we create when we point exclusively to individual behavior when assessing cancers or illnesses of any kind. Here’s a sampling of a very few books out there about HPV and the cancers it causes, written by people whose willingness to tell their personal stories, expose misinformation, explore scientific advances and address controversy is much to be admired.
Find the nearest Planned Parenthood clinic for your cervical cancer screening and HPV vaccine or call 1-800-230-PLAN to schedule an appointment.
“The HPV Vaccine Controversy: Sex, Cancer God and Politics: A Guide for Parents, Women, Men and Teenagers,” by Shobha Krishnan (Praeger, 2008).
Shobha Krishnan, a family physician and gynecologist at Barnard Health Services at Columbia University, brings a fact-based, learned and level-headed approach to the many complexities surrounding HPV: the cervical, vaginal, vulvar, anal, penile and oral cancers it causes; the latest in testing and treatment; coping with infections; transmission, and preventing infection. Krishnan has the gift of making science accessible without dumbing it down, and of delivering factual medical information with a dose of compassion and humanity. (She takes time, for example, to devote an entire chapter to the psychological impact of an HPV diagnosis.) Most important and no doubt of most interest to readers, Krishnan carefully and diplomatically parses the current debate around the vaccine, addressing questions about whether or not it should be mandated and tackling the fears that it will “promote promiscuity.” This myth-busting, common-sense guide is suitable for everyone – from parents to young adults and even health-care providers.
Related website: http://www.thehpvbook.com/
“Damaged Goods? Women Living With Incurable Sexually Transmitted Diseases,” by Adina Nack (Temple University, 2008).
In this collection of oral histories taken from 43 women, Adina Nack, a medical sociologist and faculty member at California Lutheran University, delves into the problem of women who are stigmatized by chronic STIs (both genital herpes and HPV). At the heart of the problem, Nack says, is “the social acceptability of blaming infected individuals for their illnesses.” Nack, motivated by her own experiences with an HPV diagnosis, identifies six stages of sexual transformation: the belief that one is invincible, anxiety and shock following diagnosis, a sense of having been immoral, a sense of being damaged goods and “marked for life,” sexual healing, and reintegration. Though the women have varied racial, religious and socioeconomic backgrounds, there are common threads woven through their stories: an appalling lack of adequate education about STIs, ignorance about their partner’s status and soaring guilt/anxiety/outrage/terror after diagnosis. The subjects’ motives for participating in Nack’s study are both admirable and poignant: “To help others by giving voice to the real struggles of millions of women who live with these infections,” and to experience some relief from the burden of secrecy. Whether or not you have a chronic STI, you will find something that resonates here in the voices of these women, and you will perhaps find yourself on your own journey of recollecting your sexual awakening, sexual reckoning and sexual reconciliation.
Related website: http://www.adinanack.com/
“Any Mother's Daughter: One Woman's Lifelong Struggle with HPV,” by RN Bonnie L. Diraimondo (AuthorHouse, 2010).
One person who doesn’t need any persuading on the HPV vaccine issue is Bonnie Diraimondo, a Registered Nurse and longtime sufferer of vulvar, cervical and anal cancer linked to high-risk strains of HPV. In “Any Mother’s Daughter,” Diraimondo provides a brief history of the virus (jackalopes are involved!) and gets imprimatur in a forward from Dr. Harald zur Hausen, a 2008 Nobel Prize winner for his work in discovering HPV’s link to cervical cancer. But the bulk of this book is not for the faint of heart, as Diraimondo describes the painful, grueling and endless series of treatments (surgery, radiation and chemotherapy) she receives for recurring and life-threatening lesions. Diraimondo also does not spare any detail as she is cast into the nine rings of the nation’s health-care system: There are mislabeled biopsies, insensitive and judgmental remarks, out-of-network-care nightmares and chemotherapy dosage errors. Along the way, there are some knights in shining lab coats, but they are rare. As to whether or not to have your daughter vaccinated, Diraimondo poses a blunt question: If your daughter should develop an HPV-related cancer in the future, “Can you handle being accountable for a decision which could have prevented it?”
Related website: http://www.anymothersdaughter.com/
“The Immortal Life of Henrietta Lacks,” by Rebecca Skloot (Crown, 2010).
When Dr. Harald zur Hausen was conducting his groundbreaking research on HPV and cervical cancer, he was using cells that had become world famous and had taken on almost mythical qualities – even in the world of hard-core science. The cells (known as HeLa) belonged to one Henrietta Lacks, of Clover, VA, who died in 1951 of cervical cancer, but not before doctors at Johns Hopkins had harvested samples from an unusually aggressive tumor on her cervix. Henrietta’s cell strain showed a mind-blowing ability to replicate rapidly and easily, and soon her cells were being shipped worldwide and being used in medical experiments of every kind, from developing polio vaccines to testing survivability in outer space. Skloot, a science writer and journalist, has crafted a bonified page-turner, one that blends jaw-dropping medical science with the Lacks family history, especially the family members’ anguish over the exploitation and public undressing of Henrietta’s medical history and condition. (Consider, for example, how you might feel if you learned the details of your mother’s autopsy for the first time on the newsstands.) I would like to think that Henrietta, the descendant of slaves, might be enjoying her contributions to the groundbreaking advances in medical science, especially women’s health. But I am sobered by her children’s haunting question about racial, social and economic justice: “If our mother cells done so much for medicine, how come her family can’t afford to see no doctors?”
Related website: http://rebeccaskloot.com/
Reviewed by Sarah T. Williams.