I read two articles this week that have stuck with me. Both are about cancer, and living with it. One might think that being four years out from the cancer “journey” that I would have “put it behind me,” but as those of us in Cancerland know, that is a misnomer. As the distance between us and cancer becomes greater, the instances of cancer smacking us in the face become fewer, but they are never gone. The opportunities to be bitch-slapped by the beast are plentiful. We reside in the “middle stage” of the cancer “journey,” as author Susan Gubar says.
Gubar is an English professor and ovarian-cancer club member. Her writing cuts to the chase and speaks to the very essence of my soul, a trait I greatly admire (and sometimes covet). To wit:
“But for some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it — unless you are first hit by the proverbial bus — but not now, not necessarily soon.
The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.”
Cancer does not respond predictably to treatment.
True dat. The unpredictability of the beast gives it tentacles with potential to bitch-slap us at any time. Those tentacles may float benignly under the surface, or they may reach out and grab us sight-unseen.
Gubar writes of us Cancerland residents: “No matter how grateful these patients are for their continuing existence, it requires not the spurt of sprinters but the stamina and sometimes the loneliness of long distance runners. When repetitive and arduous regimens weary the spirit, it may be impossible to value the preciousness of life, to visualize one’s harmony with the universe, to attain loving kindness, to stay positive, to greet each day as a prized gift.”
This, my friends, sums up the conundrum those of us in Cancerland face: Yes, I am happy to be alive. But dammit, living under the cloud of unpredictability is hard. It’s stressful. It’s lonely. It’s scary. It’s rife with bitch-slaps.
Article #2 is by Lani Horn, who blogs about her cancer “journey” here. She wrote a piece that was picked up by Time magazine online about the movie The Fault in Our Stars and how it represents cancer patients. Having read the book but not seen the movie yet, I was intrigued by her take on how the movie would portray the reality of cancer patients. Or, as she more deftly puts it,”Is cancer simply a storytelling device — shorthand for eliciting sympathy and turning up the heat on the issues in a character’s life — or do the filmmakers take it seriously as a situation to explore? This question sorts the cancersploitation from real cancer art.”
Horn explains that people who watch movies that deal with cancer are in two distinct categories: “outsiders, wanting to understand an experience beyond our own, or insiders, coming to see our own lives reflected.”
She and I are in the latter group. Unfortunately. Horn makes it very clear that “the world looks different after you have spent time pinned to the mat by death. The gaps between reality and representation are no longer theoretical. They are contentious.”
Oh, but to reside in the land of theoretical gaps between reality and representation. To never worry about being bitch-slapped by a tentacle.
Horn asks: “So what does it mean to use cancer as a backdrop to a story? To be sure, a prolonged or terminal cancer experience is a crucible of one’s character, as well as the characters of those around you. The fractures in our relationships break or heal under the strain of mortal threat. Cancer is an economical dramatic device.”
Yes, cancer certainly is dramatic. And unpredictable. And bitch-slappy.
Susan Gubar has done it again. She’s written another fantastic post for The New York Times‘s Well blog. This one is about The Scar Project, which is near and dear to my heart. Perhaps it’s a theme this week: scars, invisible and visible, and how we cancerchicks live with them for the rest of our lives. The women pictured in The Scar Project will have a long, long time to figure out how to live with those scars, as they are all under the age of 40.
Says Gubar of the young women portrayed: “The youthfulness of David Jay’s subjects wrenches me. Unlike them, I had a good span of my adult life — more than 60 years — before treatment. Their bodies stopped being their own too soon. Did their selves also stop being their own too soon? Cancer scars are physical mutilations of and on the body; but, more than that, cancer scars the psyche, the soul, the spirit. The ‘me’ before cancer is not the ‘me’ after cancer. Nor can these identities always be sutured.”
Yes, Susan Gubar, I think it’s safe to say that our bodies and our selves did indeed stop being their own too soon. I was 40 when I was diagnosed, which is old by The Scar Project standards, but I can say with certainty that it totally sucks to have been denied a good span of my adult life before cancer . It’s a drag. Because estrogen feeds my cancer, and many other varieties of breast cancer, I had to shut off the supply of that vital hormone. Being forcefully fast-forwarded into menopause also sucks. Aging on an unnatural timeframe, well ahead of my peers, does too. Having to face mortality decades in advance extracts a heavy toll on us cancerchicks. We want to live long, healthy normal lives; we want to see our children grow up. We hope that cancer doesn’t have other plans for us. Gubar touches on this, too, writing this about the young women portrayed in The Scar Project photos: “The ones that grip me stare at the photographer — at me — defiant. They want to live. I want them to live. Like Barbara Ehrenreich, David Jay seeks to unsettle a ‘public anesthetized by pink ribbons and fluffy teddy bears.’” Unsettle away, Mr Jay.
Gubar writes that “David Jay’s portraits contain images of women whose bared breasts look crumpled, concave, synthetic, reconstructed without or with reconfigured nipples, stitched horizontally or vertically or at an acute angle, lumpy, lopsided, wounded, or hacked off. Bravery resides there, beauty elsewhere.”
Wounded. Hacked off. Those descriptions apply both to my body and my soul. My body is wounded, and like my cancer-ridden breasts, I am hacked off. That this disease happens. That it takes so much from those who are so young. That it steals so much beauty, both internal and external. That the scars that remain are so upsetting, so unsettling. That this disease robs us of our youthfulness and our peace of mind. That the cancer experience changes who we are, forever, and not always in ways that are good or positive.
Gubar says that before cancer, she may have been perceived as being “ungrateful for an intact body, taking for granted organs that functioned normally, arrogant about the boons of health, ignorant of the preciousness of life.” As the old saying goes, we don’t know what we’ve got til its gone, and so too it is with cancer. Pre-cancer, I didn’t think about an intact body, fully functional organs, the boons of health and the preciousness of life the way I do now. While there are days I’m grateful to be up and about and not confined to a hospital bed or tethered to an IV pole, there are many more days in which I’m hacked off. While I take notice of air filling my lungs and appreciate my stamina at the gym, that appreciation is tempered by sadness at what I had to go through. While I am happy that I’m capable of achieving strength and fitness again after the cancer, surgeries, infection, and treatment took their pound of flesh (literally), I’m pissed that my triumph is bested by the omnipresent fear of recurrence.
I can identify with Gubar 100 percent when she says, “I remember the ‘me’ before cancer nostalgically. My earlier self could … connect with family and friends spontaneously and lavishly. At times I visualize the diagnosis as a gun aimed at a flying bird — pitched down from the sky in an instant to lie fluttering on the ground.”
Susan Gubar ends her beautiful article by pointing out that “the young women in The Scar Project were gunned down while just trying their wings. With courage, the wounded survivors bear invisible scar tissue beneath the physical scars of cancer: the haunting lost person each might have become, had it not been for the disease. They live, but not the lives they would have led.”