My Radio Debut

An abbreviated version of last month’s blog entry “Pinked” aired on my local NPR station (WFIU) last Thursday, October 29th. (Thank you to all of the Bloomingtonians who tuned in!) The spoken-word version of my essay is a mere 300 words (2 min), but I think I got my point across.

If you’re interested in listening, here’s the podcast.

Warning: clicking on the link will take you straight to the recording, meaning my voice will immediately leap out of your computer. So, brace yourself, adjust the volume, close your office door, whatever you need to do…I found it a little startling myself ; )

PS. Still blogging for Time Magazine (insert sound of panting here…) but sharing the load with another writer, so I’m a wee bit less stressed. Just one more week to go!

What is it About Prayer?

My friend Bruce emailed last week and told me that his partner of 19.5 years has leukemia and is having a bone marrow transplant in a few days. Why is it that my first instinct was to tell him I’d pray for them? My confusion stemming from the fact that I tossed conventional prayer out the window long ago (right along with my Catholicism). So, instead I told him “I’m not the praying type,” but that I’d be holding them both near and dear to my heart in the coming weeks. That’s the absolute truth, but it still doesn’t sound as solid, as comforting, as results-oriented as “I’ll pray for you.”

In his reply, I was reminded of the many people who prayed for me and how grateful I felt for the good energy these folks (many of them strangers) pointed in my direction. He wrote, “it’s been really interesting to see in my circle of friends, near and extended, how many people either say that ‘you may be surprised, but I pray, and I’d like to pray for you.’” Then he told me this story that (with his permission) I’m posting here because I found it really touching. For context’s sake, Bruce and his partner, Stan, live in New York City with Terry, their adopted rescue Greyhound.

A Thai hairdresser who works near here would always stop to admire our dog, saying every time, “Beautiful. Like tiger.” Our dog leaned his head against her a few weeks ago , she looked at his soulful eyes, and said, sort of out of nowhere, “Is he okay? You know, I pray for people healing.” She said she often offers prayers to Buddha for her clients–she sends a donation to the temple in New Jersey she goes to. So I told her a bit about Stan, asked if she would pray for him, wrote his name on a piece of paper and wrapped it in a couple of dollars. (You know, even in cynical New York, this seems reasonable–we’ve seen this woman for well over a year, and she clearly has no interest in hitting people up for money.) so now I’ve got her enlisted too. When I got home, Stan smiled and said, “It can’t hurt.”

My thoughts exactly—it can’t hurt.

Thinking of you Stan and Bruce… And, to all of those who prayed for me, thank you.

Blogging for the Man

As of last Monday I am the temp blogger for Time Magazine’s Wellness blog. (I would have posted sooner, but I’ve been blogging my brains out.) So far, the 3-week assignment is fun but a helluvalotta work. I’m supposed to post 4 to 6 times a day—a far cry from the 1 to 2 posts a month I squeeze out here. Not to mention I’m spending (on average) 2 hours writing each post so my work schedule is U.G.L.Y. My editor swears that once my “writing metabolism” revs up, I’ll be whipping out posts faster than you can say, “embargo, what embargo?” But, alas, by the time that happens, the gig’ll be up and I’ll be back to navel gazing. The upside? I’ll be posting here more often to ward off blog withdraw.

Pinked

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.

Want fries with that?

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?

Off the Mat

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.

Picturing Breast Cancer

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.

Exercise Caution

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.

So Much for Passing

There is no passing when you’re naked. That’s what I learned on my summer vacation when Mary and I went to Orr Hot Springs, near Ukiah, California. For more than ten years the hot springs has been one of our favorite retreats. Some of our first canoodling was in a tub at those Springs and we make a point of stopping for a night or two anytime we are north of San Francisco.

I love the remoteness of the Springs, tucked away in a fold of hills between Ukiah and Mendocino. I love the smell of sulfur and hot brakes that greets you when you throw open the car door at the front gate. (The car’s brakes smoking from a descent ripe with hairpin turns and bedazzling views.) Most of all, I am intrigued by the hippie-dippy folks it attracts. Women with lazy smiles and wavy, Rapunzel hair who swim like mermaids. Men with bodies wallpapered in tattoos who convey no other vocation than simply drinking in the goodness of life.

Thirteen years ago, during a yoga retreat at the Springs, I got naked in public for the first time—no small feat for a Catholic girl from Kentucky—but I’m afraid this trip may have been my last. My first post-mastectomy foray into buck-nakedness made me acutely aware of how much smack I’ve been talking about passing. Mea culpa. Unlike people who’s scars are highly visible, I am lucky to have the option of passing  as a flat-chested woman. Strutting my naked, breast-be-gone stuff was tough. Much tougher than I expected.

From the moment I slipped into my first soak, the feeling of loss was akin to taking a bowling ball to the gut. Not a loss of my breasts, per se, but the loss of comfort in being my bare-naked self. I felt ugly and scarred. I felt alone. I wanted to hide behind my towel, Mary, a fig leaf…anything I could get my hands on. Yes, I know my scars are still fresh—figuratively and literally. And, sure, showing up naked after such an ordeal is “brave.” Whatever. None of that seems to matter. What matters is that, for the first time in my life, I wanted nothing more than to take cover, and that felt shitty.

Breasts: More than meets the eye

My most recent post touched on some hot-button issues, so I’m going to take a moment to clarify. I didn’t mean to open fire on a woman’s right to choose reconstruction. What I am incensed about is a society that narrowly defines not only what choices women have, but also what choices women can envision for themselves. I take offense not at the choices women are offered within the structure but with the structure itself. I’m no feminist scholar (some of my best friends are and maybe they will chime in), but I think this touches on one of the core fractures between liberal and radical feminism.*  

More specific to my experience with breast cancer, I take umbrage with the fact that I consulted four surgeons—two breast cancer specialists, a general surgeon, and a plastic surgeon—and not one of them mentioned going flatchested as a viable “choice.” Instead, my “choices” were laid out like so many confections on a silver platter. Each and every item on the menu involved saving the tatas, and, as a good breast cancer patient, my job was to choose the one that looked the sweetest and not ask questions, especially regarding, say, pain, recovery times, or (god forbid) complication rates.

When I made my “non-choice,” I was treated more like a stubborn child who refused to eat her veggies than a well-informed woman who made a thoughtful decision about her health care. In refusing to play along, I felt dismissed as an anomaly. And I’m guessing I was.

Last month, in a short email exchange on the increasing number of women who choose reconstruction, Marisa Weiss, MD, founder of BreastCancer.org and a leading breast oncologist, wrote, “Most women whose surgeons bring it [reconstruction] up will pursue it.” For me, this observation begs a more complicated question–not about choice but about framing. How are the surgeons bringing up the topic of reconstruction? Or even of lumpectomy versus mastectomy? How do their own biases weigh into the discussion? Physicians are only human. They can’t possibly divorce their own loaded feelings about breasts from conversation with their patients. Or can they?

A couple of years ago, I posed similar questions regarding surgeon bias to Dale Collins, MD, director of the Comprehensive Breast Oncology Program at Dartmouth Medical School. Collins is a plastic surgeon who specializes in breast reconstruction. “The reality is that doctors push and pull in both directions, and they will typically pull patients in the direction of their bias every time,” she says. Then she added, “And a lot of surgeons are men, and men presume that women don’t want to part with their breasts.”

Whoops, now I’ve gone and gotten all down-with-the-patriarchy on y’all. And didn’t you just know it was coming? After all, I am a man-hating lesbian separatist. But, seriously, this circles back to my point about questioning the structure, not a woman’s right to choose her own chest. I don’t want to take away a woman’s breast implants or deride her desire to replace the breasts she lost to cancer. (God knows I miss mine every day.)  I just want to see the choice to go “flat-and-fancy-free”  right next to the choice to get triple-layer tatas with fake nipples on top on breast surgeon’s dessert menus. Because if a woman truly felt that she wouldn’t be seen as “less than” for being breast-free, I can’t help but wonder if more breast cancer chicks wouldn’t gravitate toward the flat side.

 

 

*Special thanks to my sweetie for helping me to think this stuff through during our many long walks together. You are amazing in every way.