by Anne Boyer
NOTES
PROLOGUE
1. Susan Sontag and David Rieff. As Consciousness Is Harnessed to Flesh: Journals and Notebooks, 1964–1980. New York: Picador, 2013.
2. Alice James and Leon Edel. The Diary of Alice James. Boston: Northeastern University Press, 1999.
3. Susan Sontag. Illness As Metaphor. New York: Farrar, Straus and Giroux, 1978.
4. Ellen Leopold. A Darker Ribbon: Breast Cancer, Women, and Their Doctors in the Twentieth Century. Boston: Beacon Press, 2000.
5. Sontag, As Consciousness Is Harnessed to Flesh.
6. Jacqueline Susann. Valley of the Dolls: A Novel. New York: Bantam Books, 1966.
7. Charlotte Perkins Gilman. The Living of Charlotte Perkins Gilman: An Autobiography. Salem, N.H.: Ayer, 1987.
8. Audre Lorde. The Cancer Journals. San Francisco: Aunt Lute Books, 2006.
9. Fanny Burney, Barbara G. Schrank, and David J. Supino. The Famous Miss Burney: The Diaries and Letters of Fanny Burney. New York: John Day, 1976.
10. Sontag, As Consciousness Is Harnessed to Flesh.
11. Kathy Acker. “The Gift of Disease.” The Guardian, January 18, 1997, p. T14.
12. Lorde, The Cancer Journals.
13. Sontag, As Consciousness Is Harnessed to Flesh.
14. Eve Kosofsky Sedgwick. A Dialogue on Love. Boston: Beacon Press, 2006.
15. S. Lochlann Jain. Malignant: How Cancer Becomes Us. Berkeley: University of California Press, 2013.
16. Ibid.
17. Leopold, A Darker Ribbon.
18. Lorde, The Cancer Journals.
19. Sontag, As Consciousness Is Harnessed to Flesh.
THE INCUBANTS
1. BI-RADS (Breast Imaging-Reporting and Data System) is a quality control system for reading mammograms, trademarked by the American College of Radiology (ACR). A score of 5 on the BI-RADS scale indicates more than a 95 percent chance of malignancy.
2. Aelius Aristides and Charles A. Behr. Aelius Aristides and the Sacred Tales. Amsterdam: Hakkert, 1969.
3. Lee T. Pearcy. “Theme, Dream, and Narrative: Reading the Sacred Tales of Aelius Aristides.” Transactions of the American Philological Association (1974–), vol. 118, 1988.
4. Michael T. Compton. “The Union of Religion and Health in Ancient Asklepieia.” Journal of Religion and Health, vol. 37, no. 4, 1998.
5. Created by the Cancer Math group at the Laboratory for Quantitative Medicine at Massachusetts General Hospital, LifeMath’s breast cancer contributions include Conditional Survival, Nipple Involvement, Nodal Status, Therapy, and Outcomes calculators. The outcomes of cancer when these variables are entered into the calculators is demonstrated via mortality curves, survival curves, pictograms, bar graphs, and pie charts, a set of choices offered in a drop-down menu.
6. Metastatic breast cancer, fake boobs, and No Evidence of Disease, respectively.
7. According to the Wage and Hour Division of the U.S. Department of Labor, the twelve-week Family and Medical Leave Act that covers full-time U.S. workers only guarantees (unpaid) time off to care for “the employee’s spouse, child, or parent who has a serious health condition.”
8. Siddhartha Mukherjee. The Emperor of All Maladies. London: HarperCollins, 2017.
9. Ki-67 is a nuclear protein associated with cellular proliferation, and its overexpression has been correlated with poorer survival outcomes in cancer patients.
10. Neoadjuvant chemotherapy, which means chemotherapy before surgery, is not common in breast cancer treatment, except in cases of aggressive cancers or large tumors. An advantage of neoadjuvant chemotherapy for people with triple-negative breast cancer is that it allows monitoring of the tumor site for a “pathologic complete response,” which means that all signs of cancer have been wiped out by chemotherapy.
11. Mukherjee, The Emperor of All Maladies.
12. Carlo Ginzburg’s essay “Clues: Roots of an Evidential Paradigm,” in Clues, Myths, and the Historical Method (see bibliography), had a significant influence over my thinking about what effect the diagnostic process can have on lived experience. Ginzburg describes the Morellian method, developed by the nineteenth-century art historian Giovanni Morelli, which involves determining the authenticity of a painting through careful study of minor details such as earlobes and fingernails. Ginzburg links the Morellian method with the approaches of Sherlock Holmes and Sigmund Freud. In all of these methods, and in cancer diagnosis, too, what appears to be unimportant becomes the most closely examined thing. As a result, what once was only itself soon becomes “evidence,” and in the case of cancer diagnosis and criminal investigation, the kind that can damn a person for life.
13. John Cage. A Year from Monday: New Lectures and Writings. Middletown, Conn.: Wesleyan University Press, 1969.
14. I use the term “ideology” in this book to mean a version of shared reality that arises from historical circumstances. Ideology often feels so natural or so true to us that it remains unexamined in daily life, assumed to be the actual truth until we confront a painful demonstration of its falsehood. In my experience, a crisis like breast cancer tends to promote the overproduction of the ideological and, through this, generates so many contradictions and dissonances that eventually what is generally accepted but untrue becomes rapidly exposed, with no other truth—at least not the shared kind—to immediately take its place.
15. John Donne and Izaak Walton. Devotions upon Emergent Occasions: And, Death’s Duel. New York: Vintage Books, 1999.
16. Ibid.
17. Clarice Lispector, Stefan Tobler, and Benjamin Moser. Agua Viva. London: Penguin Classics, 2014.
18. Aristides, Sacred Tales.
BIRTH OF THE PAVILION
1. Donne, Devotions upon Emergent Occasions.
2. Fran Lowry. “‘Chemo Brain’: MRI Shows Brain Changes After Chemotherapy.” Medscape, Nov. 16, 2011, www.medscape.com/viewarticle/753663.
3. Tim Newman. “How Long Does ‘Chemo Brain’ Last?” Medical News Today, MediLexicon International, Aug. 19, 2016, www.medicalnewstoday.com/articles/312436.php.
4. Michel Foucault. The Birth of the Clinic, 3rd ed. London: Routledge, 2017.
5. G. Cassinelli. “The Roots of Modern Oncology: From Discovery of New Antitumor Anthracyclines to Their Clinical Use.” Advances in Pediatrics, U.S. National Library of Medicine, June 2, 2016, www.ncbi.nlm.nih.gov/pubmed/27103205.
6. Sarah Hazell. “Mustard Gas—from the Great War to Frontline Chemotherapy.” Cancer Research UK—Science Blog, Aug. 24, 2014, scienceblog.cancerresearchuk.org/2014/08/27/mustard-gas-from-the-great-war-to-frontline-chemotherapy/.
7. From the back of a jean jacket worn by the artist/activist David Wojnarowicz in 1988: “If I die of AIDS—forget burial—just drop my body on the steps of the F.D.A.”
8. According to the American Cancer Society website, “The Look Good Feel Better program was founded and developed in 1989 by the Personal Care Products Council (at the time called the Cosmetic, Toiletry and Fragrance Association, or CTFA), a charitable organization supported by the cosmetic industry, in cooperation with the American Cancer Society (ACS) and the Professional Beauty Association (or PBA), a national organization that represents hairstylists, wig experts, estheticians, makeup artists, and other professionals in the cosmetic industry.” This two-hour workshop for women with cancer distributes free makeup kits along with advice on how to camouflage “areas of concern.” According to Breast Cancer Action, “Many of these donated products contain chemicals linked to increasing cancer risk and can actually interfere with breast cancer treatment.”
9. While not yet as ubiquitous as pink ribbon products, there are currently enough
varieties of “Fuck Cancer” T-shirts that a person could dress exclusively in “Fuck Cancer” T-shirts for at least a month, and probably two, and never have to repeat a shirt or do laundry. It has also become a popular slogan to engrave into jewelry, including one product from Etsy that combines “Fuck Cancer” with “This too shall pass.”
10. Ester Heath et al. “Fate and Effects of the Residues of Anticancer Drugs in the Environment.” SpringerLink, June 28, 2016, link.springer.com/article/10.1007/s11356-016-7069-3.
11. Hanna Gersmann and Jessica Aldred. “Medicinal Tree Used in Chemotherapy Drug Faces Extinction.” The Guardian, Nov. 10, 2011, www.theguardian.com/environment/2011/nov/10/iucn-red-list-tree-chemotherapy.
12. Meg Tirrell. “The World Spent This Much on Cancer Drugs Last Year…” CNBC, June 2, 2016, www.cnbc.com/2016/06/02/the-worlds-2015-cancer-drug-bill-107-billion-dollars.html.
THE SICKBED
1. John Donne and Herbert J. C. Grierson. The Poems of John Donne. Oxford, U.K.: Oxford University Press, 2011.
2. Harriet Martineau. Life in the Sick-Room: Essays, by an Invalid, 3rd ed. London: Edward Moxon, 1849. The invalid was Martineau herself.
3. Virginia Woolf, Julia D. Stephen, Hermione Lee, Mark Hussey, and Rita Charon. On Being Ill. Ashfield, Mass.: Paris Press, 2012.
4. Donne, Devotions upon Emergent Occasions.
5. Woolf et al., On Being Ill.
6. Nicole Loraux. Tragic Ways of Killing a Woman. Cambridge, Mass.: Harvard University Press, 1992.
7. Plutarchus and Christopher B. R. Pelling. Life of Antony. Cambridge, U.K.: Cambridge University Press, 2005.
8. Marlene Dumas and Mariska Berg. Sweet Nothings: Notes and Texts, 1982–2014. London: Tate Publishing, 2015.
9. Woolf et al., On Being Ill.
10. Leviticus 13:45: “And the leper in whom the plague is, his clothes shall be rent, and his head bare, and he shall put a covering upon his upper lip, and shall cry, Unclean, unclean.”
11. Diane di Prima. Revolutionary Letters. San Francisco: City Lights Books, 1974.
12. Johann W. Goethe and Charles T. Brooks. Faust: A Tragedy. Boston: Houghton, Osgood and Co., 1880.
13. Later in the same scene, Faust says this to his poodle companion:
We know that men will treat with derision
Whatever they cannot understand.
14. Bertolt Brecht, Tom Kuhn, Steve Giles, and Laura J. R. Bradley. Brecht on Art and Politics. London: Methuen, 2003.
15. Ibid.
16. Aristides, Sacred Tales.
HOW THE ORACLE HELD
1. Avicenna: “We say: If a human is created all at once, created with his limbs separated and he does not see them, and if it happens that he does not touch them and they do not touch each other, and he hears no sound, he would be ignorant of the existence of the whole of his organs, but would know the existence of his individual being as one thing, while being ignorant of all the former things. What is itself the unknown is not the known.”
2. Lucretius, from Book III of De rerum natura:
We often see
Men die by inches; toes and nails succumb
To lividness, next feet and legs, till soon
The other limbs feel the chill tread of death.
And since the same thing happens to the spirit,
Which never seems to issue, all at once,
Out of the body, it is also mortal.
3. D. G. Compton and Jeff VanderMeer. The Continuous Katherine Mortenhoe. New York: New York Review Books, 2016.
4. Ibid.
5. Ibid.
6. Ibid.
7. Burney, Diaries and Letters.
8. Lorde, The Cancer Journals.
9. Despite the historical differences in the circumstances around our mastectomies, Lorde also had to wake up from her surgery fighting, but in Lorde’s case, it was for the basic right to make noise when in pain. As she writes in The Cancer Journals, “I remember screaming and cursing with pain in the recovery room, and I remember a disgusted nurse giving me a shot. I remember a voice telling me to be quiet because there were sick people here, and my saying, well, I have a right, because I’m sick, too.”
10. Julie Appleby. “More Women Are Having Mastectomies and Going Home the Same Day.” NPR, Feb. 22, 2016, www.npr.org/sections/health-shots/2016/02/22/467644987/more-women-are-having-mastectomies-and-going-home-that-day.
THE HOAX
1. Ray Leszcynski. “‘He Had Us All Duped’: Mesquite Teacher’s Aide Has Criminal Past, Not Cancer.” Dallas Morning News, Jan. 24, 2017, www.dallasnews.com/news/crime/2017/01/24/us-duped-mesquite-teachers-aide-federal-court-sentencing-date-cancer.
2. Hannah Button. “Friends Question Tualatin Woman’s Cancer Diagnosis.” KOIN, June 20, 2017, www.koin.com/news/friends-question-tualatin-womans-cancer-diagnosis_20171130084913371/870074736.
3. Crystal Bui. “Woonsocket Woman Accused of Faking Cancer, Spending Donations.” WJAR News, June 22, 2017, turnto10.com/news/local/woonsocket-woman-accused-of-faking-cancer-to-raise-money.
4. “Society Can Decide If 15-Year Term Is Enough for Jailed Surgeon, Victim Says.” Herald Scotland, May 31, 2017, www.heraldscotland.com/news/15319719.Society_can_decide_if_15_year_term_is_enough_for_jailed_surgeon__victim_says/.
5. “Belle Gibson|The Whole Pantry.” ELLE, Mar. 13, 2015, www.elle.com.au/news/what-we-know-about-belle-gibson-5919.
6. Robert Allen. “Cancer Doctor Sentenced to 45 Years for ‘Horrific’ Fraud.” USA Today, Gannett Satellite Information Network, July 11, 2015, www.usatoday.com/story/news/nation/2015/07/10/cancer-doctor-sentenced-years-horrific-fraud/29996107/.
7. Martin Fricker. “Breast Surgeon Who ‘Played God with Women’ Faces More Jail Time.” Coventry Telegraph, Dec. 27, 2017, www.coventrytelegraph.net/news/local-news/demon-breast-surgeon-who-played-13350152.
8. Alice Park. “Great Science Frauds.” TIME, Jan. 12, 2012, healthland.time.com/2012/01/13/great-science-frauds/slide/dr-roger-poisson/.
9. “FDA Warning Letter to Sanofi-Aventis Re Taxotere Marketing.” FierceBiotech, May 14, 2009, www.fiercebiotech.com/biotech/fda-warning-letter-to-sanofi-aventis-re-taxotere-marketing.
10. Katie Thomas. “Celgene to Pay $280 Million to Settle Fraud Suit over Cancer Drugs.” The New York Times, July 26, 2017, www.nytimes.com/2017/07/25/health/celgene-to-pay-280-million-to-settle-fraud-suit-over-cancer-drugs.html.
11. “Consumer Updates—Products Claiming To.” U.S. Food and Drug Administration Home Page, Center for Biologics Evaluation and Research, www.fda.gov/forconsumers/consumerupdates/ucm048383.htm.
12. “Gainsborough Woman Whose Elaborate Cancer Hoax Conned Employer out of £14,000 Is Ordered to Pay Back £1.” Gainsborough Standard (U.K.), June 19, 2017, www.gainsboroughstandard.co.uk/news/gainsborough-woman-whose-elaborate-cancer-hoax-conned-employer-out-of-14-000-is-ordered-to-pay-back-1-1-8604627.
13. Caitlin C. “In Memoriam: Charlotte Haley, Creator of the First (Peach) Breast Cancer Ribbon.” Breast Cancer Action, June 24, 2014, www.bcaction.org/2014/06/24/in-memoriam-charlotte-haley-creator-of-the-first-peach-breast-cancer-ribbon/.
14. “History of the Pink Ribbon.” Think Before You Pink, thinkbefore -youpink.org/resources/history-of-the-pink-ribbon/.
15. Susan G. Komen for the Cure. “The Pink Ribbon Story.” https://ww5.komen.org/uploadedfiles/content_binaries/the_pink_ribbon_story.pdf.
16. “Komen to Reformulate Perfume after Unfavorable Allegations.” www.nbcdfw.com/news/local/Komen-to-Reformulate-Perfume-After-Unfavorable-Allegations-131338323.html.
17. Caitlin C. “Susan G. Komen Partners with Global Fracking Corporation to Launch ‘Benzene and Formaldehyde fo
r the Cure®.’” Breast Cancer Action, Dec. 2, 2014, www.bcaction.org/2014/10/08/susan-g-komen-partners-with-global-fracking-corporation-to-launch-benzene-and-formaldehyde-for-the-cure/.
18. Erik Eckholm. “$89 Million Awarded Family Who Sued H.M.O.” The New York Times, Dec. 30, 1993, www.nytimes.com/1993/12/30/us/89-million-awarded-family-who-sued-hmo.html.
19. Richard A. Rettig. False Hope: Bone Marrow Transplantation for Breast Cancer. Oxford, U.K.: Oxford University Press, 2007.