being present – Still Life, Beyond Cancer

What We Talk About When We Talk About Cancer

November 4, 2016November 13, 2020Sandee McGlaun

The phrases are familiar: “Fight like a girl!” “We can beat this disease.” “Warriors in pink!” When we talk about cancer, the language of battle is so commonly invoked that you almost don’t register the underlying metaphor unless someone points it out. I have myself, more than once, referred to “kicking cancer’s butt,” and that’s felt reasonably accurate as a description of my attitude. Those rogue cells really aren’t welcome to keep hanging out in my body. In fact, I’m very happy to report that, according to a recent mammogram and ultrasound, they’ve been all but banished, the cancer shrunken to nothing or near it. Woot!

Still, as surgery looms on the horizon, I’ve grown more aware of how the language of aggression, while ostensibly empowering, also pits one against one’s own body in some curious and distressing ways. My sister-in-law Lisa, a survivor, mentioned her discomfort with this language shortly after I was diagnosed. Susan Sontag, in a 1978 essay entitled “Illness as Metaphor,” describes the dilemma: “The controlling metaphors in descriptions of cancer are, in fact, drawn…from the language of warfare; every physician and every attentive patient is familiar with, if perhaps inured to, this military terminology. Thus, cancer cells do not simply multiply; they are ‘invasive’” (714). The language surrounding treatment has a similar inflection: chemotherapy is “chemical warfare, using poisons” that aim to “kill” (715).

The “military metaphor in medicine” extends back to the 1880s in reference to bacteria, but as Sontag points out, “talk of siege and war to describe disease now has, with cancer, a striking literalness and authority. Not only is the clinical course of the disease and its medical treatment thus described, but the disease itself is conceived as the enemy on which society wages war” (716). The catch is that both attack and counterattack aren’t “out there” somewhere; they take place within us.

After watching the powerful documentary Embrace earlier this week, a film that asks hard questions about why so many women hate their bodies, I was reminded that most of us don’t require a cancer diagnosis to declare war on all or part of ourselves. It’s made me think about the power of the language we use to describe our relationship to this illness, how it affects my ability to make peace with the changes coming to my body. Cancer cells threaten my health, and I want them gone—but there’s no way to separate them entirely from myself, my body, my breast tissue, not without additional losses. Eliminating them has and will bring collateral damage. Suddenly casting those rogue cells as the “enemy” seems more complicated.

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Personally, I’ve also struggled with the language of certainty that frequently emerges in conversations about cancer. While I know people’s intentions are to be supportive, bold declarations like “I know you will beat this” make me uncomfortable, as much or more because of the absolute underneath the “I know you will” as the aggression underscoring “beat.” Positive thinking is a powerful tool for healing, but I’ve found myself unwilling to make such absolute claims.

The main reason I resist is that none of us knows the future. That’s a fundamental truth. It isn’t that I don’t want to be healthy and cured—of course I do! But it feels like tempting fate to declare certainty in relation to a particular outcome; I don’t and can’t make predictions. I can only know the present.

And the present is complex and, frankly, not always a big shining ball of positivity. And that’s okay. Sometimes the insistence on “staying positive” feels less like encouragement than a denial of reality. I am thrilled beyond measure that the chemo shrank the mass. And: the bottoms of my feet are still numb with neuropathy, my joints still ache, and I still wear out way too fast to accomplish much of anything. As Buddhist nun Pema Chödrön writes in When Things Fall Apart, suffering is part of life. “Rather than letting our negativity get the better of us, we could acknowledge that right now we feel like a piece of shit and not be squeamish about taking a good look. That’s the compassionate thing to do. That’s the brave thing to do,” she explains. “We can drop the fundamental hope that there is a better ‘me’ who will one day emerge. We can’t just jump over ourselves as if we were not there” (40).

Absolute declarations that I will be cured stake my happiness on a potential event I can’t actually control. We’re so used to privileging “hope” as a good that it’s a bit of a mind-bender to consider a different perspective. But Chödrön points out that focusing on hope casts us into the future and the stories we tell ourselves about it, robbing us, ultimately, of the present moment (40). And since hope and fear go hand in hand, to live driven by hope is also to live with fear (in this case, of recurrence) hovering just underneath the surface. It seems healthier to stay focused on the here and now.

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I do believe language has profound power to shape our experience, that mantras and affirmations can make a real difference. It’s been a challenge to find positive, empowering language beyond battle metaphors and absolutes, but here are some of the phrases I’ve been able to embrace:

This is survivable.

My body can heal.

I will be okay. I am going to be okay.

From a meditation CD a friend sent:

Thank you for teaching me to stop and listen. Thank you for reminding me what is truly important. You can go now. I know I have things to do, gifts to give, purposes to accomplish, and I require a healthy, working body for this.

And perhaps my favorite, from another (salty) survivor:

All I have to do is outlive the f-ing cancer.

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If this is my life (and it is) and if my life (like all our lives) is finite, and if I don’t know its deadline (and none of us does), then how do I want to spend it? Waiting and wishing for a different kind of life, a different kind of day, a “better” one in some projected future? Or do I find a way to accept where I am in the present, since that’s all any of us really knows or has?

At the end of the film Embrace, filmmaker Taryn Brumfitt offers this advice to her daughter: Focus on what your body can do, feel, accomplish, contribute. Don’t waste a minute being at war with your body. Embrace it.

Now we’re talking. Do it today.

Autumn on the Parkway

October 25, 2016October 29, 2016Sandee McGlaun

Yesterday my husband Steve and I took a short drive along the Blue Ridge Parkway, hoping to see some fall colors. My energy and mobility are still pretty limited—for whatever reason, the Taxol has settled into my knees, leaving me to creak around arthritically—so a mountain drive seemed like a nice way to get out of the house and breathe in at least a little fresh air.

The sky was clear and blue, the weather a perfect balance of sunshine tempered by a crisp, occasionally brisk breeze.

The colors this year are pretty lackluster, however.

Just driving along, looking out over the long-range vistas provided by many of the Parkway’s overlooks, there wasn’t much color to see. The rolling mountains along either side of the ridge, while always lovely in their swells and dips and graceful silhouettes, didn’t offer any breathtaking vistas of brilliant hues. Most of the mountains and valleys remained green, or had simply faded to a kind of dusty, rusty brown, without any fanfare, without any autumnal spectacle. From that perspective, it would be easy to say there was no color at all.

But every so often, as we rounded a bend and the sun shone just right, a beam filtering through the trees lit up a few yellow poplar clustered a little ways back in the under-story. A low-growing shrub dappled the roadside bank with orange here and there, if you watched carefully. We had to pull over and walk a few feet up the Appalachian Trail to spot the scarlet of a single sassafras leaf, the mottled red and gold of a maple.

Some seasons of life, perhaps, are like that. The beauty is there, it’s just harder to see. You have to look a lot closer to find it. You have to let go of your ideas about the grandeur that should be, and cherish instead the smallest offerings.

Like a quiet afternoon with the man you love, a few moments on a windy ridge with the sun warm on your face, a sliver of splendor you can hold in your hand.

Everywhere’s a Metaphor

September 23, 2016September 25, 2016Sandee McGlaun

You know how when you buy a new car, suddenly that make and model starts showing up on every street you drive, every lot where you park? You’d never noticed it before you owned said car yourself, but suddenly it’s everywhere?

When you get diagnosed with cancer, the same thing happens. Instantly, it seems, every magazine you pick up has an ad for a new cancer drug, or a story of someone’s battle with cancer, or both. Every novel you read features a character with a mother or brother or friend who struggles with the disease (often used as shorthand for explaining the character’s current problems, especially if the mother’s/brother’s/friend’s cancer resulted in death). Watch any TV series long enough, and there will be a cancer mention, if not a full-on plot-line. Turn on NPR, and it comes up in that day’s interview.

Was I just not paying attention before now? Sometimes I wonder. I’ve lost count of the number of people I’ve met who reveal, once they hear I have breast cancer, that they are survivors: the technician who administered my pre-chemo EKG, a nurse practitioner I saw for an unrelated issue, my massage therapist. Friends have told me about mothers, aunts, sisters, co-workers who’ve traveled this path. It’s not that cancer had never entered my personal sphere: my sister-in-law is a six-year breast cancer survivor, and my husband, though his journey took place long before we met, is twenty-nine years cancer-free. But now I see it everywhere. Now it feels epidemic.

And with it come the metaphors.

Professional hazard: when you’re a writerly type, and you’re trying to make sense of the weird detour your life has taken, the metaphors are dogged. You’re in the early stages of diagnosis and testing, and you drive to the beach. The weather is gorgeous for a few miles, then suddenly the gray gathers ahead, and your road leads straight into dark, threatening clouds. Rain pummels the car with such force you slow to a crawl. It lets up, a breather. You keep driving, round another bend, the storm crashes again. Just when it seems you’ll have to pull off the road to breathe without fear, the road bends westward, and the sky ahead shines clear and blue. You even catch a glimpse of a rainbow before it shimmers away. A bank of black clouds still hovers to the left. Will the rain follow you? Will the road turn directly into its path again?

You walk a mountain path through a nearby park. The first 100 yards of the trail are open, exposed to the blazing sun. It’s hot and uncomfortable until you reach the wooded portion of the trail that winds through the trees, where the dappled shade and a light breeze keeps the heat in check. It’s an out-and-back route, so you’ll trace those same 100 yards at the end of your walk. They weren’t fun at the beginning, and you know they’ll be even harder once you’re tired and spent and sweaty from the rest of your walk. But the only way home is back through.

According to F. Scott Fitzgerald, “The test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function.” Chemotherapy, I think, is a first-rate test of a first-rate intelligence—and it’s a tough one, physically and psychologically. Embracing chemo means embracing toxic chemicals and nasty side effects that feel a lot like “harm,” even as you understand they’re doing “good” by helping you defeat the threat of the cancer.

Though the comparison feels more cliché than metaphor, chemo, for me, has been a roller coaster. Most breast cancer patients who have chemotherapy are on an every 2-week or 3-week cycle. As a two-weeker, I have one good week and one tough week. To concretize: imagine you’re going to be hit by a truck and catch the flu at the same time. For a week, you have intense body aches, nerve flare-ups, fatigue, nausea or other digestive issues, headaches, some fever. The worst passes after four to five days, followed by a couple days of lingering, less intense symptoms. You feel better, maybe almost normal, for a week. Then you willingly throw yourself in front of the truck again, because the truck is going to save your life.

I’ve been lucky, all things considered. My treatments have consisted of two sets of drugs, the first four a combination of Cytoxan and Adriamycin, and the second four rounds of Taxol. The first were the hardest, in part I think because of the ripple effect of adding drug-upon-drug to control side effects. In addition to the two chemo drugs in my drip, there was a steroid and two anti-nausea medications. I was also given a drug to boost my white-blood-cell count the day after chemo. Add Claritin to counter the bone pain brought on by the white-blood-cell booster, two at-home nausea meds should I need them, and laxative because all the anti-nausea meds cause constipation. I was already taking Ativan to sleep at night and Tylenol for discomfort. We’re talking twelve drugs going into a body that until a few weeks before hadn’t been processing anything more complicated than ibuprofen and the occasional Tums. Thankfully, I didn’t need all that was on offer—nausea wasn’t a major issue for me; I’ve only thrown up twice since I was eighteen. For what it’s worth, I did spend those eight weeks belching like a seventh grader. This phenomenon was not caught on camera.

Taxol, for most, is more easily tolerated and requires fewer maintenance drugs, though I am in the 20% of patients (yay!) who experience fairly pronounced bone and muscle pain, and the cumulative fatigue that’s been promised is setting in. But on the whole I’ve done well. I’ve hydrated like crazy, brought yoga and massage on board to help, stayed in communication with my doctors so adjustments could be made, and (knock on wood) had no major allergic reactions. The worst event was a single scary blood pressure crash one evening after the first treatment.

The being yanked back and forth has been, perhaps, the toughest piece. The days I’m out and about, dressed, seeing friends, playing with hats: those are the good days. I seize them joyfully because I can (and because after a week parked on the sofa binge-watching The Mindy Project, I am restless and bored and eager to interface with actual people). It’s necessary to find and relish the joy, to resist succumbing to the undertow of I feel good now, but I know I’m going to feel bad again. The upside of knowing: I can plan around it. The downside: the pressure of trying to cram in everything I need and want to do, especially with increasing limitations. At first, I was fully functional during my “good” weeks. Then I started limiting myself to no more than 2 outside-the-house commitments or errands per day, then one, and I’m rapidly heading toward an every-other-day energy conservation model.

In truth, all of life moves this way, back and forth between the strong days and the hard ones. In a way, having some measure of predictability is a rare gift. In our everyday lives, none of us knows when such shifts will occur, when we will turn into the path of the storm, when the trail will grow hot and steep, when or if the rainbow might reappear.

My current shifts are dramatic and clearly delineated, but the biggest change is in my own awareness. These shifts have always been. They will always be. I can neither anticipate nor thwart them, and trying to do so just makes more wasted energy. The best, the only, place for me, for any of us to rest is here, now, in this intricate present.

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