The Immortal Life of Henrietta Lacks (48 page)

Betsy and Michael Hurley and the Lancaster Literary Guild deserve far more thanks than I could possibly convey here. They gave me a key to writer heaven: a beautiful retreat in the hills of West Virginia, where I was free to write without distraction, often for months on end. The world would be a better place if more organizations like the Lancaster Literary Guild existed to support the arts. Along with that retreat house came amazing neighbors: Joe and Lou Rable kept me safe, full, happy, and loved. Jeff and Jill Shade helped me stay human during months of endless work, providing friendship and fun, beautiful property to walk my dogs on, and Baristas and JJS Massage, my favorite café
in the world, where Jill kept me well fed and caffeinated, and Jeff massaged the knots he called “writers’ blocks” from my arms, poured drinks when I needed them, and talked with me for hours about my book. I thank the town of New Martinsville, West Virginia, for taking me in. And Heather at The Book Store, who tracked down every good novel she could find with a disjointed structure, all of which I devoured while trying to figure out the structure of this book.

I am lucky to have many wonderful friends who were tireless cheerleaders for this project, despite the number of times they heard me say, “I can’t, because I have to work on my book.” I thank them all, particularly Anna Bargagliotti, Zvi Biener, Stiven Foster (Celebration Committee!), Ondine Geary, Peter Machamer, Jessica Mesman (Foo!), Jeff and Linda Miller, Elise Mittleman (P and PO!), Irina Reyn, Heather Nolan (who also read an early draft and offered helpful feedback), Andrea Scarantino, Elissa Thorndike, and John Zibell. I’m grateful to Gual tiero Piccinini for encouragement and support early in the book process. Special thanks to my dear friend Stephanie Kleeschulte, who brings me joy and keeps me young. And to Quail Rogers-Bloch, for our history, for laughter, wine, and stupid movies in the midst of madness (Yes he did, sir!). Without her, I wouldn’t be who I am today. She gave me a home to return to each night after my work in Baltimore, talked me through the hardest parts of this book, rescued me when I got stranded or ran out of money, and always offered wise feedback on drafts (some of which she listened to over the phone). Her wonderful husband, Gyon, fed me mangoes when I was exhausted, and their son, my godson, Aryo, brought much joy. Quail’s mother, Terry Rogers, always an inspiration, also provided wonderful feedback on this book.

I’m very lucky to count Mike Rosenwald (
mikerosenwald.com
) as one of my closest friends. He’s an inspiration as a writer, reporter, and reader. He’s been with me every step of this book with encouragement, commiseration, advice, and a few much-needed ass-kickings. He read many drafts (and listened to several sections over the phone), always offering helpful feedback. I look forward to returning the favor.

My family was the backbone of this book: Matt, the best big brother a girl could hope for, supported me with long talks and laughter and
always reminded me to watch out for myself. My wonderful nephews, Nick and Justin, never fail to bring me joy. They spent far too many holidays without their aunt because of this book, and I look forward to making up for lost time. My sister-in-law, Renée, has provided never-ending support for this book; she is not only a good friend, but an eagle-eyed reader with an incredible talent for spotting errors and inconsistencies. The same is true of my wonderful stepmother, Beverly, who read several drafts, giving invaluable support and insight. I also benefited greatly from her sensitivity and training as a social worker as I navigated the complexities of the Lackses’ experience.

My parents and their spouses deserve to have entire wings of this book named after them for all the support they’ve given me over the years. My mother, Betsy McCarthy, has never faltered in her belief in me and this book. She’s kept me sane through pep talks, reality checks, and the gift of knitting, a family tradition I treasure. Her drive, her artistry, and her determination have been a tremendous guide for me. She and her husband, Terry, encouraged me during the hardest times, read multiple drafts of the book, and provided wise and helpful feedback.

I am endlessly thankful to my father, Floyd Skloot, for teaching me to see the world with a writer’s eyes, for inspiring me with his many wonderful books, and for treating this one as if it were his own. He has always encouraged me to follow my art, and to fight for what I believed it could be, even when that meant taking risks like quitting a stable job to freelance. He read this book six times before publication (and that’s not counting dozens of individual chapters and sections he read before that). He is not only my father but my colleague, my selfless publicist, and my friend. For that I am lucky beyond measure.

And then there’s David Prete, my Focus
(you
know). He read this manuscript when it was far longer than any book should ever be, and used his rich talent as a writer and an actor to help me get it to a manageable size. With his grace and support, his heart, his compassion, and his amazing cooking, he also kept me alive and happy. Even when The Immortal Book Project of Rebecca Skloot took over our home and lives, his support never wavered. He has my love and my gratitude. I am a very lucky woman.

T
he source materials I relied on to write this book filled multiple file cabinets, and the hundreds of hours of interviews I conducted—with members of the Lacks family, scientists, journalists, legal scholars, bioethicists, health policy experts, and historians—fill several shelves worth of notebooks. I have not listed all of those experts in these notes, but many are thanked in the acknowledgments or cited by name in the book.

Because my sources are too extensive to list in their entirety, these notes feature a selection of some of the most valuable, with a focus on those that are publicly available. For additional information and resources, visit
RebeccaSkloot.com
.

These notes are organized by chapter, with two exceptions: Since the Lacks family and George Gey appear throughout many chapters, I have consolidated my notes about them and listed them immediately below. If a chapter is not listed in the notes, it means the source material for that chapter is described in these consolidated entries about Gey and the Lackses.

To re-create the story of Henrietta’s life and the lives of her relatives, I relied on interviews with her family, friends, neighbors, and experts on the time and place in which they lived, as well as family audio and video recordings, and unedited B-roll from the BBC documentary
The Way of All Flesh
. I also relied on the journals of Deborah Lacks, medical records, court documents, police records, family photographs, newspaper and magazine reports, community newsletters, wills, deeds, and birth and death certificates.

To re-create the lives and work of George and Margaret Gey, I relied on the holdings of the George Gey archives at the Alan Mason Chesney Medical Archives (AMCMA) at Johns Hopkins Medical School; the Tissue Culture Association Archives (TCAA) at the University of Maryland, Baltimore County; the personal archives of Gey’s family; as well as on academic papers, and interviews with family, colleagues, and scientists in the fields of cancer research and cell culture.

The estimate of the possible weight of HeLa cells comes from Leonard Hayflick, who calculated the greatest possible weight potential of a normal human cell strain as 20 million metric tons and says HeLa’s potential would be “infinitely greater” since it’s not bound by the Hayflick limit. As Hayflick wrote to me in an email: “If we were to grow HeLa for just 50 population doublings it would yield 50 million metric tons if all the cells were saved. Clearly that is impractical to do.” For more information on the growth potential of a normal cell, see Hayflick and Moorehead, “The Serial Cultivation of Human Diploid Cell Strains,”
Experimental Cell Research
25 (1961).

For the articles about the Lacks family I refer to, see “Miracle of HeLa,”
Ebony
(June 1976) and “Family Takes Pride in Mrs. Lacks’ Contribution,”
Jet
(April 1976).

Conflicting dates have been reported for Henrietta’s first visit to Johns Hopkins; the date most commonly cited is February 1, 1951. The lack of clarity surrounding the date results from a transcription error noted by her doctor on February 5. Elsewhere her records indicate that her tumor was first tested on January 29, so I have used that date.

For documentation of the history of Johns Hopkins (in this and later chapters), see the AMCMA, as well as
The Johns Hopkins Hospital and the Johns Hopkins University School of Medicine: A Chronicle
, by Alan Mason Chesney, and
The First 100 Years: Department of Gynecology and Obstetrics, the Johns Hopkins School of Medicine, the Johns Hopkins Hospital
, edited by Timothy R. B. Johnson, John A. Rock, and J. Donald Woodruff.

Information here and in later chapters regarding segregation at Johns Hopkins came from interviews as well as from Louise Cavagnaro, “The Way We Were,”
Dome
55, no. 7 (September 2004), available at
hopkinsmedicine.org/dome/0409/featurei.cfm
; Louise Cavagnaro, “A History of Segregation and Desegregation at The Johns Hopkins Medical Institutions,” unpublished manuscript (1989) at the AMCMA; and “The Racial Record of Johns Hopkins Uni
versity,” Journal of Blacks in Higher Education
25 (Autumn 1999).

Sources on the effects segregation had on health-care delivery and outcomes include:
The Strange Career of Jim Crow
, by C. Vann Woodward; P. Preston Reynolds and Raymond Bernard, “Consequences of Racial Segregation,”
American Catholic Sociological Review
10, no. 2 (June 1949); Albert W Dent, “Hospital Services and Facilities Available to Negroes in
the United States,”
Journal of Negro Education
18, no. 3 (Summer 1949); Alfred Yankauer Jr., “The Relationship of Fetal and Infant Mortality to Residential Segregation: An Inquiry into Social Epidemiology,”
American Sociological Review
15, no. 5 (October 1950); and “Hospitals and Civil Rights, 1945–1963: The Case of Simkins v. Moses H. Cone Memorial Hospital,”
Annals of Internal Medicine
126, no. 11 (June 1, 1997).

Henrietta’s medical records, provided to me by her family, are not publicly available, but some information on her diagnosis can be found in Howard W. Jones, “Record of the First Physician to see Henrietta Lacks at the Johns Hopkins Hospital: History of the Beginning of the HeLa Cell Line,”
American Journal of Obstetrics and Gynecology
176, no. 6 (June 1997): S227-S228.

Information on the history of Virginia tobacco production came from the Virginia Historical Society, the Halifax County website, archival documents and news articles at the South Boston Library, and several books, including
Cigarettes: Anatomy of an Industry, from Seed to Smoke
, by Tara Parker Pope, an overview of tobacco history for the general public.

Several books helped me reconstruct the era and places in which Henrietta lived, including
Country Folks: The Way We Were Back Then in Halifax County, Virginia
, by Henry Preston Young, Jr;
History of Halifax
, by Pocahontas Wight Edmunds;
Turner Station
, by Jerome Watson;
Wives of Steel
, by Karen Olson; and
Making Steel
, by Mark Reutter. The history of Turner Station is also chronicled in news articles and documents housed at the Dundalk Patapsco Neck Historical Society and the North Point Library in Dundalk, Maryland.

For information on the development of the Pap smear, see G. N. Papanicolaou and H. F. Traut, “Diagnostic Value of Vaginal Smears in Carcinoma of Uterus,”
American Journal of Obstetrics and Gynecology
42 (1941), and “Diagnosis of Uterine Cancer by the Vaginal Smear,” by George Papanicolaou and H. Traut (1943).

Richard TeLinde’s research on carcinoma in situ and invasive carcinoma, and his concern about unnecessary hysterectomies, is documented in many papers, including “Hysterectomy: Present-Day Indications,
“ JMSMS
(July 1949); G. A. Gavin, H. W. Jones, and R. W TeLinde, “Clinical Relationship of Carcinoma in Situ and Invasive Carcinoma of the Cervix,
“ Journal of the American Medical Association
149, no. 8 (June 2, 1952); R. W TeLinde,
H. W. Jones and G. A. Gavin, “What Are the Earliest Endometrial Changes to Justify a Diagnosis of Endometrial Cancer?”
American Journal of Obstetrics and Gynecology 66
, no. 5 (November 1953); and TeLinde, “Carcinoma in Situ of the Cervix,”
Obstetrics and Gynecology
1, no. 1 (January 1953); also the biog raphy
Rich ard Wesley TeLinde
, by Howard W. Jones, Georgeanna Jones, and William E. Ticknor.

For information on the history of radium and its use as a cancer treatment, see
The First 100 Years;
the website of the U. S. Environmental Protection Agency at epa.gov/iris/subst/0295.htm; D. J. DiSantis and D. M. DiSantis, “Radiologic History Exhibit: Wrong Turns on Radiology’s Road of Progress,”
Radiographics
11 (1991); and
Multiple Exposures: Chronicles of the Radiation Age
, by Catherine Caufield.

Sources on the standard treatment regimen for cervical cancer in the 1950s include A. Brunschwig, “The Operative Treatment of Carcinoma of the Cervix: Radical Panhysterectomy with Pelvic Lymph Node Excision,”
American Journal of Obstetrics and Gynecology 61
, no. 6 (June 1951); R. W Green, “Carcinoma of the Cervix: Surgical Treatment (A
Review),” Journal of the Maine Medical Association
42, no. 11 (November 1952); R. T Schmidt, “Panhysterectomy in the Treatment of Carcinoma of the Uterine Cervix: Evaluation of Results,
“ JAMA
146, no. 14 (August 4, 1951); and S. B. Gus-berg and J. A. Corscaden, “The Pathology and Treatment of Adenocarcinoma of the Cervix,”
Cancer
4, no. 5 (September 1951).