This instrument can teach, it can illuminate; yes, and it can even inspire. But it can do so only to the extent that humans are determined to use it to those ends. Otherwise it is merely wires and lights in a box. There is a great and perhaps decisive battle to be fought against ignorance, intolerance and indifference. This weapon of television could be useful.
… said Edward R. Murrow in his keynote address to the 1958 Radio-Television News Directors Association convention. Were he still alive, I imagine he could say the same of Twitter in 2013, an instrument that has become a source of truth and power for me. It is my favorite social media networking platform and the subject of today’s Health Activist Writers Monthly Challenge.
Twitter appeals to me with its speed and instant access to the information I need. Offering it up in bite-size pieces or, if I am starving for more, delivering links to charts, and graphs, studies and reports; to reliable sources or even pulp and punditry, if I’m so inclined. Some times, it reminds me of evenings spent far away and long ago, by the transistor radio, as in Van Morrison’s Days Before Rock and Roll, turning the knobs and tuning in to places, like Athlone and then farther away to Radio Luxembourg.
In the winter of 2011, I was a neophyte to cancer country and social media, the language and politics of both forcing me to resume the ways of a full-time, often recalcitrant, student with a full-time job. Until one Monday evening last March, I was feeling rather smug. Having done my homework, I could talk knowledgeably about breast density and mammograms, estrogen and progesterone receptors, and the difference between DCIS and IDC. I had learned how to decipher a surgical pathology report, but I had not been thorough enough. As I peeled away the layers of awareness, I began to feel betrayed, deliberately duped by a media often saturated with stories of breast cancer like mine, of ribbons and races, of celebrities who triumphantly “overcome.”
A chilling reality emerged from a virtual conversation with a group that meets online every Monday, 9pm ET at#BCSM, The Breast Cancer and Social Media Tweetchat. Here, at “the intersection of breast cancer and all things social media,” I learned about metastatic breast cancer and METAvivor, a volunteer-run non-profit which has coalesced around three sad truths
support for mets patients is lacking
awareness about the disease is strikingly low
research devoted to mets is woefully underfunded.
A stranger in a strange land by any measure, I was unprepared for such a level of familiarity, an instant and easy intimacy in the virtual company of The Breast Cancer and Social Media Twitter chat, where truth is conveyed at lightning speed in 140 characters or less. That particular Monday, the group was “speaking” with @CJMeta fromMetavivor,Dian “CJ” M. Coreliussen-James who introduced herself thus: “Founded an MBC support prog 07. Grew FAST! Knew we could do more as non-profit. And 4 of us founded METAvivor in Jan 09.” Such an unfamiliar urgency to those words. And then the sentence that leaped from the screen and into my heart:
One of the things we talked about today was this reality: of four founders only two are still living.
Re-tweeted again and again, the message was clear. Metastatic breast cancer is the kind of breast cancer we all fear most, the kind that spreads to distant places on our bodies, usually the bones, the liver, or the brain. Sitting at my computer, unsure how to contribute, it dawned on me that the lump in my breast was not the thing that could kill me; a lump can be survived. But the breast cancer that metastasizes. That breast cancer that spreads to distant organs? It is not considered survivable. METAvivor is committed to helping change what continues to be this tragic inevitability, and Twitter can be a useful weapon. I think Edward Murrow might agree.
. . . 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.
1. A steep, sharply curving elevated railway with small open passenger cars that is operated at high speeds as a ride, especially in an amusement park.
2. An action, event, or experience marked by abrupt, extreme change in circumstance, quality, or behavior.
You. Have. Cancer.
A cliché comes next – a roller-coaster ride. You know its refrain. First, the arduous climb towards brilliant blue. Gradually, the anxious giggling and chatter subsides. At the top, breath suspended, you wait for the world to fall out beneath you. Then a sudden plunge at shocking speed. Might you plummet to your death? Not yet. Still more unpredictable twists and turns await, above and below. White-knuckled, you cling to the bar, only half-believing there is enough life in the click-clacking, old machinery to set you back on solid ground. Suddenly it is over. You are free to return to the midway, albeit a little green around the gills and unsteady on your feet. As he helps you out of the car, you hope no one but the carnie can tell you are not as confident as you were.
Photo by Adam Shaw
In an unguarded moment, decades later, you will recollect The Big Dipper at Barry’s, closing your eyes to better see yourself, a child again hurtling through the North Atlantic air. Curls wild in the wind, mouth agape, eyes squeezed to block out light and noise and fear, and you half-hoping to stay aloft forever, because ‘coming down is the hardest thing.’ But you will land safely, startled to find yourself somewhere between Tom Petty and the Heartbreakers “Learning to Fly” and Robert Frost’s lovely “Birches“
I’m recovering well from an aggressive case of prostate cancer, I haven’t had any treatment in months, and all of my physical signposts of health are pointing in the right direction.
Still, I’m depressed.
And I’ve been ambushed by it. After more than a year of diagnosis, treatment and waiting, it’s almost as if, finally and unexpectedly, my psyche heaved a sigh and gave itself permission to implode.
I’m not alone in this cancer-caused depression. As many as 25 percent of cancer patients develop depression, according to the American Cancer Society. That’s contrasted with about 7 percent of the general population.
This isn’t about sadness or melancholy. It’s more profound than that. Broadly, I have a keen sense of being oppressed, as if I were trapped, wrapped up in some thick fog coming in off the North Atlantic.
To be more specific, I’m exhausted, unfocused and tap my left foot a lot in agitation. I don’t much want to go anywhere – especially anyplace that’s crowded – and some days I can’t even bear the thought of picking up the phone or changing a light bulb. All of this is often topped off by an aspirin-proof headache.
The fatigue frustrates me most. When I envision myself it’s as a body in motion, walking or running, not foundering in bed. On one recent day, I slept till 10 in the morning – getting 11 hours of sleep – then took a nap from noon to 2. And I was still tired.
I’ve had occasional depression over the years, but nothing as dogged as this. When I first learned that I had prostate cancer, I wondered about depression. But after the shock of the diagnosis wore off, I was sharp and clear-headed. I wasn’t depressed as I went through treatment — surgery, radiation and hormone therapy. I was buoyed by a kind of illness-induced adrenaline.
The bone-smoldering fatigue arrived in late spring/early summer, and intensified as summer deepened. I thought that I might be depressed, but resisted the diagnosis, didn’t want to countenance the idea that I could be depressed after all of my treatment.
I stubbornly chalked the fatigue up to the lingering aftereffects of radiation and my fluctuating levels of testosterone. But I was wrong.
I am seeing a psychiatrist who specializes in cancer patients, and have started a course of medication. My doctor assures me that depression isn’t unusual among those who are on the far side of treatment.
Partly, I think, I’m grieving for the person I was before I learned I had cancer. Mortality is no longer abstract, and a certain innocence has been lost.
And while the physical trauma is past, the stress lingers and brings with it days washed in fine shades of gray. In the same way that radiation has a half-life, stress does, too. We all ache to be the heroes of our own tales, right? Well, I’m not feeling too heroic these days.
Cancer pushes lots of difficult buttons. It lays bare our basic vulnerability and underlines the uncertainty of this life. And prostate cancer attacks our culture’s ideal of manhood. The steely-eyed Marlboro Man isn’t expected to worry about incontinence and erectile dysfunction.
Cancer feels bleaker than other diseases. Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.
It’s harder to write about the weight of depression than it is to write about prostate cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it’s somehow my fault, that I’m guilty of something that I can’t quite articulate.
This has also been a difficult post to write because during my dark waltz with cancer I’ve depended on my natural optimism and my sense of humor to help see me through. But depression blunts those traits.
In the end, though, I believe in and trust in the healing power of the stories that we tell each other. And I wouldn’t be truthful to you or myself if I ignored the fact that I’m depressed even as I wait for a brisk wind billowing out of the north that’ll blow this fog of mine away.
Some times, it reminds me of evenings spent far away and long ago, by the transistor radio, as in Van Morrison’s Days Before Rock and Roll, turning the knobs and tuning in to places, like Athlone and then farther away to Radio Luxembourg.
