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.
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.
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.
