Living With Cancer: Coming to Terms
While I continue taking an experimental drug to keep my cancer at bay, I cannot claim to be in either a remission or a recurrence, and the word “maintenance” does not shed much light on the situation. The paucity of the language at my disposal stymies me, as does its obfuscations. I am grateful that patients , hungry for more fortifying formulations, have begun to create them.
“Language is the mother of thought, not the handmaiden of thought,” the poet W. H. Auden once said, quoting the aphorist Karl Kraus, and then he added, “Words will tell you things you never thought or felt before.” Some of the vocabulary swirling around cancer leaves me feeling what I never wanted to feel or unable to think what I need to think.
Consider, first, medical lexicons that appear to blame the people receiving care. A patient said to have “failed tamoxifen” knows the drug has failed her. Similarly, a “platinum resistant” or “refractory” patient experiences not her refractory resistance but a drug’s ineffectuality. The word “relapsed” seems to find fault with people who have fallen back into error. Preferring the term but dreading the fact of recurrence, I bristle at surgical scans said to be “clean,” for the word makes me feel that I have been or will become dirty.
In the topsy-turvy world of cancer, anything “positive” or “advancing” spells trouble. Yet a brain labeled “unremarkable” after an M.R.I. hardly conveys the good news it contains.
Cancer’s most prominent words simply sound horrible to my ear: the mal at the start of malignancy and the hiss at the end of metastasis, as well as the hard-to-pronounce cachexia (loss of body mass) and ascites (buildup of fluids), not to mention such drugs as bevacizumab (Avastin), capecitabine (Xeloda), pemetrexed (Alimta) and trastuzumab (Herceptin). Doesn’t it seem sinister (and confusing) that each has an a.k.a.?
Just as jarring is the use of fine words in grotesque settings: cancer has “seeded” itself throughout the body; nodes have been “harvested”; a tumor is “indolent.”
Euphemisms for tumors abound. I have often been told that scans showed a lesion, shadow or spots. Before a number of medical regimens, I was informed about “minimal or acceptable side effects,” only later to wonder if I should have undergone treatments that left me with sores and rashes so debilitating that I could not swallow or with bone-wearying exhaustion that made it impossible to stand up. Because hospital idioms mask brutal realities, Dr. Susan Love came up with the now ubiquitous phrase “slash, burn and poison.”
Created by patients, portmanteaus — two words combined to produce a third — capture the dread of cancer as well as efforts to cover it up. My favorite, “scanxiety,” designates fears accompanying the anticipation of a test that may show evidence of disease. “Chemoflage,” as used by the anthropologist S. Lochlann Jain, mocks the deceptive information circulated by cheery chemotherapy brochures.
After genetic testing produced a population of people aware of their heightened risk of developing cancer, the neologism “previvor” arose to describe those who have tested “positive” for a deleterious mutation. It refers to survivors of a predisposition to cancer and has largely replaced the medical category — “unaffected carriers” — that turned this group into a contaminating menace.
Certain phenomena commonly confronted by cancer patients await new words. What should we call the befuddlement that results from the conflicting opinions of specialists on the course of action urged on a patient? Or the mind-numbing misery of interminable waits in (usually beige) waiting rooms (with jigsaw puzzles)? Don’t we need a rubric for the growing population that must turn down the unpronounceable drugs because they are unaffordable?
For years I have resisted the pervasive tag “cancer survivor” because it erases or demeans patients who do not or suspect they cannot survive the disease. In its place, readers have suggested P.L.C. (Person Living with Cancer), cancer veteran, cancer gambler and, given all the hospital trips, cancer schlepper (for which I thank my friend Nancy K. Miller).
Recently, my oncologist called me “an exceptional responder.” Since most of the people in my clinical trial have suffered recurrences, Dr. Matei meant to be happy on my behalf, but the classification saddened me on theirs.
So I was delighted to encounter an essay by another friend who encourages linguistic exuberance with respect to this matter of self-definition. In an article composed nine years before her death from metastatic breast cancer, the witty queer theorist Eve Kosofsky Sedgwick recommended acronyms like BBP (Bald Barfing Person) and WAPHMO (Woman About to go Postal at H.M.O.). She then confided that she personally had alternated between PSHIFTY (Person Still Hanging In Fine Thank You) and QIBIFA (Quite Ill, But Inexplicably Fat Anyway) until she settled on “undead.”
To describe herself when she would no longer qualify to be numbered among the undead, Eve decided on “differently extant.” Like many of our cherished deceased, she remains to this day palpably and differently extant. Her words help me come to terms.
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