Life in general

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. 


The Season of Breasts

Summer is the season of wear-as-little-as-you-can-get-away-with weather. And everywhere I look I see breasts. Breasts that are barely covered by bikinis. Breasts holding up colorful tube tops. Breasts peeking out from behind skimpy sun dresses. Breasts, breasts, breasts.

I didn’t pay that much attention to breasts before my surgery. But now that mine are no longer, I can’t see a pair without feeling a bit melancholic, and the negative space of my missing breasts feels amplified by the proliferation of boobage around me in a season of scantily clad bodies.

A few weeks ago, I endured my own little rite of passage when I wore a bathing suit for the first time since my double mastectomy. No bones about it–I am flat. No, let me be more clear–I am VERY flat. Flatter than flat. Truth be told, I am closer to concave. But, even in a tankini, I pass as an extremely flat-chested woman.

Passing as a woman with a flat chest versus being identifiable as someone who had breast cancer and chose to have her breasts amputated puts me in an uncomfortable, yet familiar, position.

Familiar because I am often mistaken for a straight woman. Over the years, I’ve made my peace with other people’s uncertainty (or mistaken certainty) about my sexual orientation. But passing equals a certain amount of invisibility and, while I won’t digress into a discussion about the pros and cons of passing as straight, I feel much more conflicted about passing as someone untouched by cancer.

Thanks to the “magic” of breast implants and prosthesis, most mastectomy patients pass with ease. And once you’re seated upon the breast cancer merry-go-round, the energy put into “saving the rack” (as one friend wryly put it) nearly equals the energy put into “saving your life,” and the importance of passing is a huge part of the sales pitch.

“You’ll look normal in clothes,” the plastic surgeon promised. “No one will be able to tell,” he assured me. But I wasn’t interested in fooling anyone. Especially when I dug a little deeper into what was involved. The first step is surgery to place two deflated, accordion-like, plastic devices between my chest wall and my pectoral muscles. The second step is to slowly, over as many as eight months to a year, inflate said accordions through a plastic straw sticking out of my chest. (Yes, like a blow-up doll.) As the “tissue expanders” inflate, they painfully  and gradually pull the muscles up and away from their moorings on bone. Remember, these are hard, plastic shells capable of pulling a person apart, so forget doing “crazy” stuff for the next year or so, like lying on your stomach or hugging. Then, the not-so-final step is surgery to remove the expanders and pop in silicone or saline implants. I say “not so final” because implants are notorious for leaking and, at best, must be replaced every 10 years. Apparently, I am one of only a handful of women to say “thanks but no thanks.”

According to an article in the October 2008 issue of the New England Journal of Medicine, roughly 180,000 women were diagnosed with breast cancer last year. Of those, two thirds opted for a lumpectomy with radiation; one third chose mastectomy; and 56,000 underwent reconstruction–double the number from just a decade ago.

Criticizing this save-the-rack mentality is akin to touching the third rail of breast cancer care. Thousands of women fought hard to require my insurance company to fork over $30,000 for a boob job. A great irony since they refuse to pay for BRACA1 and 2 genetic testing, which costs a fraction of the price and reveals surprisingly accurate information about a woman’s odds of having a cancer recurrences, either of the breasts or ovaries. But, of course, the results of my genetic test don’t look very good under a sweater.

I know I sound angry, and I suppose I am. I’m angry that breast reconstruction is a distraction; an easy way for women and their doctors to fixate on “breast cancer as make-over” while dodging the bigger issues, like the lifestyle and environmental factors that contribute to cancer rates and recurrences. Much less a frank discussion of how reconstruction makes future lumps harder to find because  breast implants obscure mammograms.

I’m angry that, if I had listened to the three different surgeons, all of whom recommended reconstruction, I might have woken up from my first surgery with tissue expanders in my chest, and I doubt I could have felt the cancerous lump left behind.

I’m angry that so little has changed in the 30+ years since Audre Lorde compared women offered breast prostheses after mastectomy to babies pacified with candy after an injection. That’s exactly how I felt when a nurse brought me two Nerf football-sized prostheses the morning after my double mastectomy. How can we still be here?

To be 38 and to have refused reconstruction makes me a rare bird. In a room of breast cancer survivors, my chest is the only one that resembles a 12-year-old boy’s. The local breast cancer center (where I go for the free massages) is the one place where I don’t pass as flat-chested. But instead of feeling embraced by my peeps, I feel rebuked. I get the distinct feeling that the “pink sisterhood” is not pleased. During one visit, as I waited in the lobby for the massage therapist, a staff member smiled cooly and handed me a brochure. Inside was information about a local non-profit group that purchases breast prostheses for poor women. She obviously assumed I was destitute because why else would a woman go out in public without her boobs?

As someone who has always felt like an oddball, I find my new “otherness” depressing. Of course, outside of the breast cancer community,  shouldn’t I just be content to pass? But invisibility is cold comfort. Soon after my surgery I read Lorde’s writing on the topic of invisibility and breast cancer and her words resonated deeply with me. In The Cancer Journals she writes:

If we are to translate the silence surrounding breast cancer into language and action against this scourge, then the first step is that women with mastectomies must become visible to each other. For silence and invisibility go hand in hand with powerlessness. By accepting the mask of prosthesis…we reinforce our own isolation and invisibility from each other, as well as the false complacency of a society with would rather not face the results of its own insanities. In addition, we withhold that visibility and support from one another which is such an aid to perspective and self-acceptance. Surrounded by other women day by day, all of whom appear to have two breasts, it is very difficult sometimes to remember that I am not alone.

Yes, her words are inflammatory, and, yes, her full-out condemnation of breast prosthesis is harsh, but I would trade every pink ribbon on the planet to see a few more flat-chested, 30-something, breast cancer survivors. To know that I am not alone in refusing to believe that a couple of new boobs will make everything okay.

Coming Home to Family

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.