I'm going to cheat a little bit tonight and refer to a recent essay on cancer language by Susan Gubar, a distinguished feminist literary scholar who has been dealing with advanced ovarian cancer for several years. Gubar has been posting intermittent commentary about her health, her treatments for cancer, and her reflections about it all in the New York Times since September of 2012, and she has become one of my favorite commentators on what it's like to live with a dreaded disease.
Gubar's work is generally funny, thoughtful, and (not surprisingly) academically inclined, which I confess is one of the reasons why I take pleasure in it. Her latest column, "Living with Cancer: Coming to Terms," echoes some of the themes she touched upon in her first post, "Not a Cancer Survivor."
In the earlier essay, she lamented the limited and limiting labels that are offered to people with cancer:
[Surely] there are others (besides the members of my support group) who cringe at adopting such an identity — and for a number of reasons. Does the celebration of the triumphant cancer survivor cast those who died from the disease in the role of victims who somehow failed to attain the requisite resiliency to overcome it? An American propensity to circulate stories of valiant individuals triumphing over great odds must make people coping with recurrent, chronic or terminal illness feel like duds. And even for those patients with cancers that can be cured, claiming to be a survivor might feel dangerous — like a jinx, a sign of the sort of chutzpah or hubris that could bring about dire reprisals from the powers that be.
In the new one, she discusses the odd conventions surrounding being a "survivor," but she also discusses how illogical and unpleasant much of the terminology used in cancerworld can be:
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.?
It's definitely worth reading this whole column, as well as her earlier essays if you can.
For our purposes tonight, I'd like to suggest we share some of our own frustrations with cancer terminology. Just as we have come up with our group cheer, "Hooray for nothing!" out of our own sardonic experiences with the weird dissonances of cancer treatment, so too we might expand our collective repertoire if we are willing to disclose the language we have crafted for our own use.
I know that many people label or name the cancer/tumor(s). Do you? Do you have a mental image of it at all? When I was visualizing the lesions I had in my lungs, I thought of them as tangled knots of hair that I needed to separate. I haven't named it, though, since for me that gives it too much credence and emotional reality.
What are your favorite neologisms about neoplasmic conditions? (Here is the only case in which the idea of "newness" is not celebrated, as it is almost everywhere else in American culture.) I'm fond of "scanxiety," which we've used here often, and which Gubar mentions approvingly as well. Do you use others?
As for that unpopular and imprecise term, "survivor," Gubar shares this find:
[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.”
I rather like "undead," carrying the cachet of the latest fascination with zombies and vampires, though I have to say I doubt I'll start using it regularly myself. What about you?
No reason not to search for language that fits the reality we experience, when the present vocabulary doesn't do, and "Fuck Cancer," while heartfelt, goes only so far.
The floor is open. Please don't hesitate to talk about anything else you like, too; this is always an Open Thread.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.