October 13, 2009
Yesterday, I spoke with a reporter from the Detroit News. She is writing a story about breast cancer awareness month and was interested in talking to folks who are less than tickled pink by the proliferation of pink ribbons. (Who, moi?) I thought I’d blogged forward and backward about this topic, but I was caught a bit off guard by what seems to be the most obvious question of all.
“So, why is pink NOT your color?” she asked.
(Insert forehead-smacking moment here.)
How could I have not written at length about why (exactly) pink is not my color! Okay, loyal readers (all 3 of you) know that I am not a card-carrying member of the rah-rah, breast cancer sisterhood. Hence, maybe the name of my blog is self-explanatory. But I welcomed the chance to answer her question and thought I’d do so here as well. Because, believe it or not, until I was tarred and feathered in pink last February, I thought pink was a swell color.
Let me explain. In those awful two weeks after the “C-bomb” dropped, Mary and I schlepped around shopping for a breast cancer surgeon. My first inkling that pink was no longer my innocent, cherry, childhood friend was when I entered the first breast surgeon’s waiting room. It was as if a flamingo had just vomited on the place. My eyes stung at the pink upholstery on the chairs, the pink wall-to-wall carpet, and the pink window treatments. The staffs’ outfits matched their surroundings, like lizards that evolve to look like rocks or leaves. Every nurse was peppered with pink-ribbons from her lapel pin to her pink shoelaces. And the pink suffocation didn’t end when you escaped the office, it followed you home, like a virus.
Every time I consulted a breast cancer surgeon, I left with a bag of pink SWAG. I felt as though I’d just attended the breast cancer Oscars–or a birthday party for 5-year-olds. I kid you not, I have a box of breast cancer tchotchies in my linen closet. (Seems like hubris to recycle that breast cancer business—never know when you’re going to need a brochure on metastasis.) Each goody bag revealed various assorted breast cancer bric-a-brac including a pink water bottle to quench my thirst after sitting in the waiting room for hours, pink binders to hold my important medical papers, a pink day planner to help me remember my radiation and chemotherapy appointments, a pink pen to write them down with, and a pink journal in which to record my pinkest of pink thoughts. (Just so you know…I am not making this up.)
Now, just for kicks, imagine a man newly diagnosed with prostate cancer. Picture his doctors and nurses showering him with baby-blue baubles. Maybe his gift bag includes a blue beer cozy, blue-ribbon-bedazzled sweat socks, and a blue notebook to keep track of his deep man-thoughts about how it feels to lose a part of his masculinity. Imagine the man slinging his blue tote over his shoulder on his way out the door. Let’s stop and ask ourselves: Is this supposed to make the man feel better? Does his possession of a blue-ribbon festooned notebook make him feel welcomed into the “sacred brotherhood” of prostate cancer patients? Did a chipper “survivor” pop into the examination room to hold his hand and shoot him knowing looks while the doctor outlined his surgical options? (Again, I’m not making this up.)
This scenario sounds insane when you put a man in the picture, but this is exactly what happened to me last February, and I’m guessing it happens to thousands of women every year. Granted, some breast cancer patients undoubtedly eat pink ribbons for breakfast, lunch, and dinner and that’s fine, but let’s make some room for those of us who aren’t hungry.
This pink-coating of breast cancer makes me want to scream until I’m pink in the face. What would I yell? Oh, here are a few jewels that come to mind: For starters, I’m an adult, not a fairy princess. I don’t want to join your pink sorority. I have a deadly disease, not a boo-boo you can cover up with a giant pink Band-aid. I don’t want a fucking pink day planner. What I need is a surgeon who will treat me like an intelligent person, a person who needs accurate, concise, no-bullshit information much more than she needs a linen closet overflowing with pink gewgaws.
And while I’m on my pink soapbox, I would add: Don’t use your pinkest, most upbeat voice to tell me that radiation will give me a “virtual breast lift” by tightening the skin around my breast or that reconstruction will give me the “breasts I’ve always wanted”—all expenses paid! And stop waving your pink wand, like I’m 8 instead of 38. Pink is cute. Pink is frilly. Pink is for little girls. But there is nothing cute or frilly about having your breasts carved off and your estrogen levels chemically decimated to the point that your libido is a distant memory and your genitals turn to sandpaper.
Do I want to shroud myself in black? No.
Am I a negative, angry person who wants to simmer about her disease, her brush with mortality, her troubles on Tamoxifen? No.
What I am is a smart, curious, thoughtful person who needs a little pink-free space to wrestle with her breast cancer demons. Because no amount of forced pink smiles, pink walks, and pink banners will undo what cancer has done to my body and my psyche. The hardest part is that I know there are other women out there who feel the same, but I can’t see them or hear them because we are all drowning in an ocean of pink.
October 1, 2009
I’m cranky. Today is the first day of breast cancer awareness month and everywhere I look some asshole is slapping a pink ribbon on their crappy product and calling it charity. At the grocery store yesterday, I saw a bottle of Mike’s Hard Lemonade festooned with a pink ribbon. Really? Does no one care that drinking ups your risk of breast cancer? Yes, one must drink in excess but, honestly, isn’t that the point of making alcohol taste like pink lemonade? Have these people no shame?
Lord help me, it’s going to be a LONG month.
Instead of kvetching about everyone else making a buck, why not start to exploit my own “survivor status.” For instance, my short but snappily illustrated article in this month’s O Magazine is about new legislation aimed at ending the practice of “drive-thru mastectomies.” When my editor tossed me this softball assignment last July, I had to swing. Who better to cover this topic than a gal who detoured through the mastectomy drive-thru lane not once but twice! Who cares that they “straightened up” my story by editing out a mention of Mary or that they inserted a huge error into why I needed to revisit the OR in the first place. ‘Cause, hey, I was only too happy to cash the check. And, after all, it’s only money. Right?
September 25, 2009
After my surgeries, when I was too sore and stiff to move, a friend told me a story of her Tai Chi teacher who never missed a day of practice, even while hospitalized, because she would practice in her mind. So, I decided to try it with yoga. Unable to even think about stepping on the mat, I’d lie in bed at night and picture myself moving through my practice. I felt my body as it had been before surgery—strong and flexible. In my mind’s eye, I’d see my arms sweep overhead at the beginning of a sun salutation and my body bend forward gracefully as I touched the floor. Arms flexing, they supported me as I jumped back into a plank position. My back was supple, my chest expansive as I glided into upward-facing dog. In that way, I’d flow through my yoga practice. Imagining the feeling of my limbs working in concert with my trunk, my muscles engaged, my chest open. The best part was that after I’d had these yoga practices in my head as I drifted to sleep—body bruised, swollen, stiff, propped up with a half dozen pillows—I’d often dream of yoga. The line between visualization and dream blurred by handstands.
August 30, 2009
The loss or disfigurement of one’s breasts to cancer is traumatic. One reason it’s so painful is how visibly the surgery can change the body’s landscape. Once treasured contours are clear-cut in the name of survival. Not wanting to be shocked after surgery, I sought out photos online and in books of women who’d lost their breasts to cancer. In hindsight, I won’t call that time misspent, but I do wish I’d come across David Jay’s SCAR Project earlier.
August 24, 2009
I was inundated with breast cancer literature upon my diagnosis and the dire warnings about lymphedema really freaked me out. A little back story for those of you lucky enough to be clueless about how this stuff works: Most breast cancer surgery involves the removal of at least a handful of lymph nodes. These little nodules of tissue act as waste-removal factories for the circulatory system. In an attempt to rid a patient’s body of as many stray cancer cells as possible, breast cancer surgeons carve out those nodes draining waste directly from the tumor. Sounds good, right? The problem is that any time you mess with the lymph nodes there is a chance that the neighboring nodes will refuse to pick up the slack. If that happens, the system gets backed up and you’re suddenly the proud owner of an unseemly swelling of the affected limb or body part called lymphedema. Even better, it can be permanent, requiring one to don a very unfashionable compression garment to squeeze the bejesus out of said arm. Just what every girl hopes for…one fat limb. Lymphedema is one of breast cancer’s many side show acts. Obviously it’s not the main event. Hello??? You have cancer. Is now really the time to worry about having a fat arm? But, just in case the cancer wasn’t enough to ruin your day, now you get to worry about having one of your arms blow up like a water-logged corpse. Great.
So, the only thing worse than having this happen (or, of course, dying from cancer) is knowing that you brought it on yourself. And this is where the alarm bells in my head really started clanging. Several things I read on the subject informed me that I’d be risking lymphedem post-breast cancer surgery if I was ever foolish enough to lift more than 15 pounds. And by ever, I mean never ever. I mean, seriously. Think about this…no more lifting bags of groceries from the cart to my car, no more picking up my infant niece, no more dragging yard waste around the yard while I weed like a maniac…and the list goes on and on. And, as if that’s not enough of a life sentence, the literature also warns that a woman who is post-breast cancer surgery should never pick up a suitcase with the now useless arm or carry a heavy bag over said shoulder, should she risk the wrath of lymph.
Okay, you’re going to tell me to stop whining about the possibility of backed-up plumbing in my arm when I tell you that my surgeon assured me not to worry. Huh? How can Dr. Feel Good tell me not to sweat it when Dr. Susan Love’s Breast Book insisted that I forever coddle my post-surgical arm like an 18-year old chihuahua? Turns out, Dr. Feel Good determined that I had good odds of dodging lymphedema because I’m young and fit. Plus, he only removed six of the little buggers, which was still about five too many for my tastes, but, as it turns out, it’s not out of the ordinary to lose a baker’s dozen or more during breast cancer surgery, which ups the odds of a lymph-drainage breakdown, so I should feel lucky…funny but I don’t. Instead, I’ve suspected the whole “lymphedema thing” was just another means to extricate breast cancer patients from their personal power. Not with any clarity of purpose but by a patriarchal medical establishment that would much rather pat us on the head and say “oh, you sweet thing, don’t lift a finger or you may irreversibly maim yourself” than give us a thwack on the shoulder and say “go live your life to the fullest.” Not to mention, taking the time to actually do the studies to find out whether or not the advice is really correct or just an old surgeon’s tale.
And so all of this tongue-wagging brings me to the reason for my post—a new study that made me smile and send a wave of gratitude to Dr. Feel Good (even if he is a fuck up) and the researchers who decided to test the “fragile arm” theory. Last week the New York Times reported on a new study published in The New England Journal of Medicine in which researchers found that not only are most doctors too restrictive in their post-surgery advice for breast cancer patients but also that more exercise, not less, may be the best way to ward off lymphedema. Whahoo!!! I’m not going to get into the details of the study or the article because (a) you can read them for yourself and (b) I’m trying to discover the charms of shorter blog entries. But, needless-to-say, I hope breast cancer patients and their doctors warm up to the idea of bulking up those arms because living in fear of lifting more than 15 pounds is no way to live.
May 5, 2009
Last weekend marked the two-month anniversary of my double mastectomy AND the 135th running of the Kentucky Derby. So, of course, I went to Louisville, to my parents’ house, the house of my adolescence, and the first place that comes to mind when I think of Home.
Coming home to my family is almost as daunting as coming home to myself. Something about being surrounded by family is both comforting and excruciating. Maybe because, under the lens of their loving scrutiny, there is no place to hide. I eventually relax into their collective embrace but it takes awhile. And, while the end point is freeing, getting there is exhausting.
As the sole homo in a very hetero group, I’ve always felt a bit like the family oddball. Now, I’m not just the homo in the room–I’m the homo with cancer. Great.
I arrive just in time for the annual Derby party. It’s a contained but boisterous gathering of familiar faces, and I’m seduced by the group’s revelry. Wanting to join the fray, I sit in an overstuffed chair next to the television. In less than five minutes I’m back in the kitchen gasping for air. A few minutes later I try again, but this time I stay on the outskirts of the room, near the door. I feel like a child hovering at the edge of a pool, one who wants to join the fun but is deathly afraid of the water. So I skirt the edge, dipping my toe in and yanking it back out, shocked by the intensity of the cold and the potential for drowning.
Of course, my behavior isn’t that unusual. Like I said, I’m a bit of an oddball, and in a crowd, even a familiar one, I’m easily overstimulated and quick to retreat into myself, like a box turtle at a kids birthday party. My immediate family is comfortable with my awkwardness. And they know that my illness has intensified my skittish nature. They help me lick my wounds without ripping things wide open and, for that, I am grateful.
My extended family—god love’em—is a different story. Overflowing with good intentions, they march right up to my rawness and begin the debridement. I’m not twenty seconds in the door before I’m ushered front and center, told a feel-good-breast-cancer story, and presented with a pink-ribbon-styled lapel pin. Staring at the trinket in my palm, I can’t help but wonder if this trip was a bad idea. “Too vulnerable to exist” is how Audre Lorde described feeling after her mastectomy and I can relate.
Indeed, I have several of you to thank for suggesting I read The Cancer Journals by Audre Lorde. Her reflections upon breast cancer and her mastectomy have resonated deeply with me, including her experience of homecoming:
Going home to the very people and places that I loved most, at the same time as it was welcome and so desirable, also felt intolerable, like there was an unbearable demand about to be made upon me that I would have to meet. And it was to be made by people whom I loved, and to whom I would have to respond. Now I was going to have to begin feeling, dealing, not only with the results of the amputation, the physical effects of the surgery, but also with examining and making my own, the demands and changes inside of me and my life.
Eight weeks post-op and I’ve only begun to feel the traumatic impact of cancer on my mind and body. On a physical level, my chest is slowly thawing. The right side has more sensation than the left, partially because the left was assaulted a second time and partly because the lymph nodes were taken from under the left arm, creating a heavy, thick numbness. I’m still disturbed by the sheer boniness of my chest and its lack of contour, how the outline of every rib is laid bare, and how the distortion of my left rib cage, caused by the curve of my spine, protrudes so that, when I’m wearing certain clothes, I’ll catch a glimpse of it and think it is the rise of my breast. The flash of reality that follows, the sharp pain of loss, is one of the hardest parts of my so-called recovery.
I say so-called because I don’t know what it means to “recover” from cancer. One recovers from the flu or a bad head cold. Recovery implies a sense of normalcy that feels beyond my grasp. But, then again, a certain sense of normalcy has always felt beyond my reach, so maybe this is just to be expected.
April 5, 2009
Since I won’t know the answer to the chemo question for another few days, I’ve decided to use this “treatment lull” to get reacquainted with my body. As I’ve said before, thirteen years of yoga has made me hyper-aware of my anatomy. For the most part, this is a good thing. It helps me deal with a spine that has more twists and turns than a season of Lost, and apparently it’s quite useful for finding cancerous lumps. Yet, oozing awareness out of every square inch of one’s real estate has its downsides, especially when it comes to physical pain and trauma. So, last month, for the first time in a long time, I consciously checked out of my body.
I know lots of people distance themselves from their bodies. I know some people live entire lives unacquainted with their physicality. And, yet, I was surprised at how easy it was to say sayonara. In many ways, it felt like preparing the house to leave for a long vacation. But instead of checking the locks on the windows and putting timers on the lights, I busied myself getting in shape. For me, that meant doing LOTS of power yoga because it makes me feel invincible—something I knew I’d need for the trip. Then, the night before my double mastectomy, I took stock of my internal milieu, tidied up one final time, locked the door, and walked away.
Lest you think this is turning into some Sybil-like memoir, don’t worry, I didn’t go far. I just went around the corner; far enough that I could keep an eye on things. And, of course, Mary stood guard. Having a trusted sentinel at the gate made the disembodiment feel doable and safe. And, so, I became an observer of the process.
Like a medical voyeur, I sat back and watched things like the nervous resident jabbing my vein with a needle and Mary telling the drunk-with-power nurse for the zillionth time why the pregnancy-test protocol was a waste of everyone’s time. More importantly, the distance imbued me with a sense of calm in those final nightmarish moments in the operating room–before the anesthesiologist does his thing–when you can’t help but see things you don’t want to see. In the end, all things better observed than endured.
Immediately before and after my surgeries, the distance from my body was a blessing; but, alas, one can’t stay on vacation forever and, last week, I decided it was time to return home. Luckily, re-entry was easy. I simply rolled my yoga mat out and crawled on. Yoga is my fail-safe way to plug directly back into my body. Indeed, the transition occurs so quickly I almost get whiplash. That first day, I painfully arranged my limbs into the only pose I could muster–child’s pose–and I cried. My tears weren’t because my body felt ill-fitting after my long absence but because the body I’d abandoned the month before welcomed me back with open arms, no questions asked.
Since that day, I’ve been kicking the tires and, frankly, I’m shocked at the condition of my chassis. When I walked away, everything was functioning pretty well. My muscles were tone, my back was flexible, things were grooving. Yes, of course, I’m realistic; I didn’t expect my body to feel untouched upon my return, but I didn’t expect it to feel like someone had ransacked the place. While I was on my sojourn the muscles of my back turned to concrete, my arm muscles went AWOL, and my shoulders drifted forward, like settlers circling the wagons to protect their fort.
I am not a wuss. I usually get things up and running on my own. But my body was in shambles. I didn’t know where to start, and I could sense that mutiny was only one false move away. It was time to call in reinforcements. I started with my Rolfer (for those of you who haven’t had the pleasure, Rolfing is a form of body work that releases connective tissue). To my relief, she put my shoulders back in their rightful place and reintroduced the front of my body to the back of my body—we agreed I’d obviously tried to back out of my body. A couple of days later a massage therapist began to demolish the concrete in my back. And this afternoon an osteopath gently steered several wayward vertebrae back into alignment. Yes, it takes a village.
And, of course, I’m gingerly returning to yoga. Restorative and Iyengar classes have taken the place of power yoga, and I’m rekindling my home practice. Yoga channels me straight into the undertow of my subconscious. Normally, I resist–seeing the value in staying grounded–but these days I indulge by allowing myself to sink down into the deep. Breath by breath. Pose by pose. I tentatively explore the perimeters of stiffness and occasionally bump into the barbwire of pain. But I keep inching into territory that is simultaneously foreign and familiar because I’m on a rescue mission. I’m looking for pieces of myself that survived the looting. Specifically, I’m looking for that feeling of invincibility; I know it’s around here somewhere.