I don’t care much for today’s WEGO Health Challenge that aks if my health condition were an animal what would it be? It reminds me of those frivolous team-building activities often employed to “break the ice” at professional retreats or new employee orientations. We’ve all been there, and I know I am not the only one who silently groans when a well-meaning facilitator announces, “We’re gonna’ start with a quick icebreaker. Go stand next to someone you don’t know. . . . ” or some version of that scenario.
The ensuing game will require a level of cooperation and politeness, with us showing our best sides as we reveal little known facts about ourselves, or the ever popular “two truths and a lie.” Playing along, we will make something up about what kind of car, animal, vacation destination most represents our richly varied personalities or which historical figure we would invite to dinner or what we would buy if we had all the money in the world. I understand the purpose, but in this case, the “ice” is breast cancer, and we have been skating around on it for too long, spinning on its euphemisms and platitudes, treating it like an allegory. Time for real talk about breast cancer.
Along with a low tolerance for bullshit, a diagnosis of breast cancer exposed within me a fortitude that surprised me and just enough good humor to assuage the unbelievably insensitive words and actions of people I had expected to be kinder. Being playful about breast cancer by comparing it to an animal, real or imagined, rubs me the wrong way.
I suppose if I played along, the animals crossing my mind would be the kind we associate with unwelcome guests – a snake crawling on its belly imperceptible in the desert grass, a cunning chameleon, a rodent scuttling along the boards in the attic, a cockroach in the corner of the shower. Each one unwelcome, a thief in the night who slips through an unlocked window while you slumber, barely disturbing the contents of your home, but nonetheless leaving you feeling violated and unsettled, unable to pinpoint what was stolen from you. Uncertain.
In life before breast cancer, I rarely felt such unease, but like Rip Van Winkle, I am no longer as sure of what awaits when I wander down once-familiar roads. The fast and furious flurry of appointment-making and data-collection at the beginning of the journey has been replaced by something akin to the routine of one who has been forced into exile. Banished by breast cancer to a new country, where ironically, I often feel like an unwelcome guest myself, a stranger in a strange land, wondering if an ice-breaker might be in order.
In the resumption of normal activity, the rules of engagement change. Nominally normal, this life interrupted forces me to make room for new experiences and customs, new words that have the power to transport me directly into and far away from fear. When cancer crept in, fear and uncertainty moved in too and show no sign of leaving. It reminds me of those times when our house is a mess and friends show up on our doorstep, unannounced, but overstay their welcome anyway, infuriating us by missing all the dropped hints and not-so-subtle signs that it really is time to be going. Wearily polite, we just resign ourselves to doing the mannerly thing and wait for them to leave rather than ask them to go.
If I were playing the ice-breaker game today, I might share two truths and a lie. The lie? Cancer is a gift. The truths would flow from poetry such as this by the inimitable Ted Kooser:
. . . a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.
Living as opposed to surviving. Wholly well rather than declared NED (No Evidence of Disease), the state commonly used to describe a patient’s status after treatment. Breast cancer surgeon, Dr. Deanna Attai, explains that, “we can never truly say a patient is cured of cancer – the best we can do is say that we find no evidence of it … NED is not perfect (very few things in life are), but still a good place to be.”
Day 5 of the Health Activist Writers Monthly Challenge asks us to consider what we might do as health activists, if we were not limited by money or time. I would begin by asking how to make sure the WHO’s definition of health, is more than words set down on paper; rather, that it drives every health care decision and policy. Those of us who live with breast cancer surely aspire to more than NED, but until there are radical changes at the policy level, many of us must settle for “good enough” health. Many patients, breasts amputated, bodies scarred, minds muddled by medication, with hearts that beat a little faster with the terror of recurrence, believe they have little choice but to acquiesce to grueling regimens that include radiation and chemotherapy, the complications of which may even kill them. Treatments can be as formidable as the cancer itself, and we should worry that profit interests of the companies who manufacture them may take precedence over the well-being of the patients subjected to them.
I agree with Dr. Matthew J Edlund who argues that “absence of disease is an impoverished vision of health.” He suggests we aspire to a definition of health that recognizes us as social beings, that includes spirituality, so important to the overall well-being of so many of us. Working towards such a view of health or wellness might prompt the policy changes that are urgently needed to address the epidemic of breast cancer, the approval of kinder treatments, the lack of access to quality health care choices for families who live in poverty, the contaminants in our environment, and the right of every human being, regardless of race, ethnicity, and social status to good health and good health care. Ediland suggests we strive for a definition of health as “Complete physical, mental, social and spiritual well-being for individuals and populations.”
Imagine how much better our world would be for us and for our children if we demanded this standard of health for everyone. The sobering reality is that we have been forced, by circumstances often beyond our control, to settle for “good enough,” just another statistic in Nixon’s War Against Cancer which shows little sign of ending after 40 years in the trenches and billions of dollars.
In 1992, legislation made mandatory the reporting of cancer in Arizona, where I live. Arizona Revised Statute §36-133 also required Cancer Registries to conduct lifelong follow-up of cancer patients. To that end, over a year ago, I received a letter from Scottsdale Healthcare. Initially, I slid it under a pile of junkmail, anticipating the obligatory pink statement, its itemized charges as confusing as the explanation of benefits that strangely never seem to apply to me. By the time I returned to it, my checkbook at the ready, I was surprised to find not a bill, but a straightforward request for information about my health from the Cancer Registry and a postage paid return envelope. Believing that maybe, just maybe, my “data picture” might help us find out what causes and how to prevent all cancer, I completed the form with every detail about my surgeries and treatment and sent it off.
But how accurate is that data about me given that no one could ever tell me with surety how long I’d had cancer before I detected the lump myself? My breast cancer had evaded detection by three mammograms, camouflaged by dense tissue. Along with my health, I suppose my data picture is “good enough.”
So what are the implications for data within the context of early detection and survival? Is it possible that data may be manipulated? My view, as a layperson with breast cancer and not a statistician, that major players such as the Susan G. Komen foundation have artfully used statistics to place the onus on women not only to detect their own breast cancer, but also to “survive it.” By manipulating statistics to claim that ”The five-year survival rate for breast cancer when caught early is 98 percent. When it’s not? 23 percent.“ Komen overstates the power of mammograms and, once again, distracts us from the horrible reality that metastatic breast cancer kills approximately 40,000 breast cancer “survivors” annually.
With all the billions of dollars and mountains of data available to us, why is that statistic not changing? Why are we so far from the World Health Organization’s definition of health? Perhaps we can get just a little closer by taking a giant collective step towards accepting the premise of Sir Austin Bradford Hill, pioneer of the randomized clinical trial:
Health statistics represent people with the tears wiped off.
The nitrogen in our DNA, the calcium in our teeth, the iron in our blood, the carbon in our apple pies were made in the interiors of collapsing stars. We are made of star stuff.
Remembering the first time I saw it, nebulous and bright white on a screen in my doctor’s darkened office, the cancer makes me think of Carl Sagan’s “star stuff.” It requires magical thinking to accept the notion that human beings are descendants of a supernova that exploded long before we were born, that there is ancient star dust in each of us. None of this occurred to me in the moments or months following the diagnosis of invasive breast cancer. Then, I needed a glossary of terms, a shoulder to cry on, a plan of attack, a doctor to speak to me in layman’s terms. I wanted to know why me? Almost all of these, I discovered within the blogosphere, a place at once as far away and out of time and reach as a faraway continents, yet as accessible as leaning over the neighbor’s fence to borrow a cup of sugar.
If you have just been diagnosed with breast cancer, you may be unable to focus beyond why it happened to you. Much bigger than you, cancer is also a business that rages on relentlessly while you just need a quiet moment to confront your own mortality. Perhaps for the first time. There are lengthy forms to fill out, appointments to make, options to consider that are neither fair nor easy, new vocabulary to understand, acronyms and reports to decipher, odds to weigh, bills to pay, and periods of interminable waiting that lead only to more “if this, then that” scenarios. You will wonder if the magic will ever return. It will, but it will take time, and you will rediscover that you are a star.
You may need some help along the way, as I did:
Patience is a Virtue
I am not a patient woman. I don’t like waiting in line at the post office except when I force myself to practice being patient. I just like to fix the problem and move on. Quickly. Maybe you’re the same, but try not to rush into making decisions when you really don’t understand the menu of choices before you. It will be difficult to accept that a period of a few weeks will not make a difference in your treatment, but really, it probably won’t, so take the time to ask questions, take notes, get second, third, fourth opinions if necessary. As overwhelming as it is, the more you know, the more you can arm yourself and those who care about you most, to navigate a path through unfamiliar territory.
Get By with a Little Help From your Friends
When people offer to help, tell them exactly what you need. I was wholly unprepared for how incapacitated I would be following a mastectomy and DIEP flap. Stooped and bedraggled, I had aged twenty years over three days. I wanted to be seen only by my husband, my daughter, my doctors, and my best friend who became the gatekeeper. She posted on my Facebook page, fielded phone calls, kept people away from me until I was ready, and even forgave me for not remembering that she visited me in the hospital. Twice.
Don’t Go It Alone
Take someone with you to your appointments. This is important, because you are likely to forget everything your doctor says after “You have cancer.” You need someone there to be your ears, to write down all the things that are important, like, “If the test is positive, we will take the other breast and your ovaries.” I wish I had taken this advice, and I’m sure my doctor would have appreciated it, given the number of times she had to produce her notes to prove that yes, in fact, she had told me about the possibility of radiation.
Express Yourself
Writing or talking about the experience helps you and other people whom you may never meet. In the beginning, I tried to write my way out of cancer by myself. I opened a WordPress account and began typing. I didn’t “publish” at first. I chose instead to save my drafts, the same way I once locked up my teenage angst in a secret diary. Like breast cancer, the blogosphere was a foreign place, but unlike the insidious culture of the former, it offered alternative places of clarity and transparency. At once apart and a part of this new world, I could be alone and connected, followed and follower, reader and writer. I could be in control. Social media redefined the boundaries of my life. I can even eavesdrop or take part in a virtual conversation with a group that meets online every Monday, 9pm ET at#BCSM, The Breast Cancer and Social Media Tweetchat. It was here at “the intersection of breast cancer and all things social media,” that I felt less alone and found a safe place to fall.
Learn the Language
There is no way to avoid Breast Cancer Awareness Month. The entire world turns pink. Breast Cancer Action helped me know what to say, the questions to ask about where my money goes when I make a donation to breast cancer research, and in a general election year, provided me questions for those interested in a political career. Grassroots and moral, BCA does not accept any money from any of the following:
Pharmaceutical companies
Chemical manufacturers
Oil companies
Tobacco companies
Health insurance organizations
Cancer treatment facilities
Language is everything.
It is a strange sisterhood indeed, where an instantaneous intimacy allows us to talk with strangers about being so vulnerable, being poked and staged and prayed for. At first, it made me uncomfortable, but not as uncomfortable had I been left out by language. Maybe it can be attributed to my immigrant spirit, but I had to learn the vocabulary, the rules, the norms for breast cancer patients gathered together in waiting rooms.
It’s Not Your Fault
Like me, you may feel guilty. Lots of strangers will tell you they are praying for you, that they know you can “beat this” because you are strong. This is both disconcerting and profoundly moving. Since cancer came calling, I confess I reverted to childish ways of bargaining with God … “I’ll be a better wife, mother, daughter, friend, boss, human being in general, God, if you could just see to it that my Oncotype DX number falls in the really good range,” or “I will never complain about anything ever again, God, if you could just keep the cancer at bay.” I had questions for this God, too; they came in rapid succession, disturbing my rest: “Did I get cancer because I used my cellphone while driving, or maybe because I delivered a beautiful baby when I was 34, an age described by some pregnancy books in 1997 as “advanced maternal age.” Perhaps it was because I hadn’t been able to breast feed or been diligent about buying certified-organic produce? Perhaps it had something to do with the full-bodied Zinfandel I used to enjoy at the end of a day, pre-diagnosis. But mostly, and still, the question for which there is no satisfactory response, “Why, oh why, did our darling daughter’s life have to be interrupted by my cancer?” Together, it all adds up to a lot of me believing I caused my cancer. Today, I know I didn’t.
Be Prepared for Unexpected Benefits
A chiropractor once told me that mobility is the fountain of youth. I didn’t know what he meant until I got cancer and forced myself to start running again. Prior to my mastectomy, I ran three miles every other day. My post-surgical lap around the hospital ward, was at best, tentative and unsteady, but that had more to do with all the things still attached to me, the urinary catheter and the JP drains, as well as the stunning realization that standing up straight is just not possible three days after a DIEP flap reconstruction. Just two weeks later, I was walking along the Arizona Grand canal with my husband and our girl. Standing a little straighter, I was outside and thrilled to feel the air, the last of the JP drains removed, but also a little frustrated to be reduced to a stroll. My feet wanted to break into a run, and that happened within just a few weeks. Like magic.
While cancer is not a gift, it brings with it unexpected surprises, those things you always wanted to do but never had the time, now get done. I took a college photography class, I said “No” to things and to people who had never heard it from me before. I rediscovered and reconnected with the themes of my childhood – my love of books, of writing, of Van Morrison and good conversation.
In the end, it really is all about me. And you. Star stuff.
If I close my eyes to remember, I can just make out the shadow of my former self standing up and walking out the door, mortally offended by the kindly Breast Cancer Navigator who had just told me I had cancer. Like an unexpected snow, the pronouncement fell from her lips, rendering me wordless. Language betrayed me. But not for long.
Within cancer, dance words and phrases that tend to sanitize and glamorize suffering and pain, to hide the horror and heartbreak visited upon ordinary people going about their daily lives. Old words take on new meanings – “staging” is no longer about the theater; “fog” evokes a state of cognitive loss rather than Van Morrison’s misty mornings; “the cure” is no longer “hair of the dog that bit you” but an elusive thing all wrapped up in a pink ribbon. “Sentinel,” which I had previously reserved for the lonely cormorant perched on a post in the shallow waters of sleepy Morro Bay, now pertains to the first node to which cancer cells are most likely to spread from a primary tumor, and “infusion” is no longer a culinary technique that transforms olive oil into a delicious gourmet gift; rather, it is intravenous chemotherapy – harsh and chemical.
With the current lull in my condition, the new vocabulary no longer comes fast and furious as it did following diagnosis. For now, the pathology report has been filed away along with hastily scribbled notes from doctors’ offices and graphs showing likelihood of recurrence.
I like to think I am, as Ted Kooser writes, “between cars on a passenger train,” still searching for the right words.
Life is a long walk forward through the crowded cars of a passenger train, the bright world racing past beyond the windows, people on either side of the aisle, strangers whose stories we never learn, dear friends whose names we long remember and passing acquaintances whose names and faces we take in like a breath and soon breathe away.
There’s a windy, perilous passage between each car and the next, and we steady ourselves and push across the iron couplers clenched beneath our feet. Because we are fearful and unsteady crossing through wind and noise, we more keenly feel the train rock under our legs, feel the steel rails give just a little under the weight, as if the rails were tightly stretched wire and there were nothing but air beneath them.
So many cars, so many passages. For you, there may be the dangerous passage of puberty, the wind hot and wild in your hair, followed by marriage, during which for a while you walk lightly under an infinite blue sky, then the rushing warm air of the birth of your first child. And then so soon, it seems, a door slams shut behind you, and you find yourself out in the cold where you learn that the first of your parents has died.
But the next car is warm and bright, and you take a deep breath and unbutton your coat and wipe your glasses. People on either side, so generous with their friendship, turn up their faces to you, and you warm your hands in theirs. Some of them stand and grip your shoulders in their strong fingers, and you gladly accept their embraces, though you may not know them well. How young you feel in their arms.
And so it goes, car after car, passage to passage. As you make your way forward, the roadbed seems to grow more irregular under the wheels as you walk along. ‘Poor workmanship,’ you think, and to steady yourself, you put your hands on people’s shoulders. So much of the world, colorful as flying leaves, clatters past beyond the windows while you try to be attentive to those you move among, maybe stopping to help someone up from their seat, maybe pausing to tell a stranger about something you saw in one of the cars through which you passed. Was it just yesterday or the day before? Could it have been a week ago, a month ago, perhaps a year?
The locomotive is up ahead somewhere, and you hope to have a minute’s talk with the engineer, just a minute to ask a few questions of him. You’re pretty sure he’ll be wearing a striped cap and have his red bandana around his neck, badges of his authority, and he’ll have his elbow crooked on the sill of the open window. How impassively he will be gazing at the passing world, as if he’s seen it all before. He knows just where the tracks will take us as they narrow and narrow and narrow ahead to the point where they seem to join.
But there are still so many cars ahead, and the next and the next and the next clatter to clatter to clatter. And we close the door against the wind and find a new year, a club car brightly lit, fresh flowers in vases on the tables, green meadows beyond the windows and lots of people who together — stranger, acquaintance and friend — turn toward you and, smiling broadly, lift their glasses.
