breast reconstruction – Still Life, Beyond Cancer

Past Perfect: The Grammar of Healing

January 20, 2017Sandee McGlaun

My husband is the math mind in the family; I’m the English nerd. But lately I’ve found myself thinking less about settings and symbolism, and more about symmetry and statistics.

Many years ago, I did an experiment where I held a small mirror up to the center of my face while looking in a second larger mirror, so I could see how I’d appear if my face were perfectly symmetrical. All of us are at least a little asymmetrical, so the trick quickly reveals the differences, large or small, in the two sides of one’s face: the right eye has a little more tilt than the left, maybe, or one cheek is a bit fuller than its counterpart. The altered reflection, for me, almost felt like looking at different person, perhaps a sibling of myself.

The process of bilateral breast reconstruction has a tendency to highlight other asymmetries. The first thing my reconstructive surgeon said to me when he looked at my pre-surgery chest was that my left rib cage sat a little more forward, was a tiny bit more prominent, than my right. I’d never noticed this particular (minor) anomaly, but it’s apparently just as common for there to be asymmetry in the rib cage as in the face. The difference in my bone structure became most noticeable immediately after surgery and during my early tissue expander fills; for a while the right expander lagged behind the left, making me look lopsided. I also discovered I have a pocket of fat on my right upper back, unmatched on the left, which appeared only when I didn’t have breasts to pull the skin forward and keep it flattened out.

howard-schatz-and-beverly-ornstein-olympic-athlete-body-types-gymnastics-high-jump-triple-jump-wrestling — Even Olympic athletes’ bodies vary dramatically. (Photo by Schatz and Ornstein)

Studies indicate we equate higher levels of symmetry with perception of beauty, so it’s only too easy to worry over our various anatomical irregularities. But there’s so much about our bodies that’s out of our control: the set of our features; our bone structure; height; the size and shape of breasts, booty, genitals, hands and feet. We can exercise and lift weights to affect our body composition—but the ability to bulk up muscle mass, and the places our fat cells are predisposed to distribute themselves? That’s pre-determined. Significant elements of our health are hardwired too: some suffer multiple allergies from birth, for example, while others are born with immune systems seemingly hewn from impenetrable stone.

Bodies are glitchy and unpredictable in surprising ways, for better and for worse. The fact my body grew a malignant mass is somewhat mysterious: I am, as best we can tell, the first person in my blood family on either side to develop cancer of any kind. My body’s responsiveness to treatment is, to my mind, equally mysterious, and awe-inspiring: I learned this week that only 20 to 30 percent of triple negative breast cancer patients have, as I did, a “complete pathologic response” to chemotherapy. I was thrilled when we got the pathology report stating they’d found no evidence of remaining cancer during surgery, but the news felt weirdly abstracted. Learning the actual statistical probability of achieving that response was sobering. It made me realize just how incredibly fortunate I am. Having a complete response lessens the chance of recurrence dramatically, dropping it from 35+ percent down to 5 percent. As my oncologist said, it’s cancer, so there are no guarantees. But short of never having developed it in the first place, the odds for long-term survival are the best they can be.

I’ve often felt lucky to be in the body I am. Aside from some cranky tonsils, a couple bouts of pneumonia, and one broken bone, I’ve been hale and hearty most of my forty-seven years, and I’ve managed to stay active and maintain a healthy, if not altogether svelte, weight into my middle age without Herculean effort. Excepting the sixth grade, when my legs had a sudden growth spurt separate from the rest of my body that briefly turned me into a sort of hybrid stork-human, my parts are mostly proportional, and my face, while perhaps not symmetrical enough for Hollywood’s standards, is reasonably attractive.

I did nothing (unless you count that bane of puberty, wearing braces) to “earn” any of these features of anatomy. They just are, like my cancer, like my cancer’s responsiveness to treatment. Why did my body grow malignant cells in the first place? I don’t know. Why were those cells especially sensitive to death-by-chemotherapy? I don’t know the answer to that either. I do know I’m extremely lucky and profoundly grateful to be in the relatively small percentage of survivors who have that experience.

I’m just vain enough to feel relieved that the obvious asymmetries that appeared in my chest and back are slowly evening out as reconstruction progresses. But I’m far more reassured by a different realization. As I walked into the dining room Tuesday night, preparing to sit down to dinner with my hubby, it suddenly occurred to me: I no longer have cancer. Granted, my treatment isn’t quite done–follow-up radiation is the standard-of-care for triple negative diagnoses, even with a complete response to chemo, and reconstruction will take a while longer. But the chemotherapy worked; the surgery confirmed it. No more need I say, I have cancer. Now I can say, I had cancer.

My inner English nerd reappeared, rejoicing: the simple past tense has never sounded so beautiful.

Post-Mastectomy: The Lay of the Land

December 31, 2016Sandee McGlaun

Some years ago, during my late twenties and early thirties, I penned and performed a one-woman show about Barbie. I had (and still have) a love-hate relationship with the ubiquitous doll, who, as the play reveals, was the source of many happy hours of childhood play, but whose questionable influence on young girls’ ideas about women’s bodies and gender roles troubles me. One scene in the show tells the story of a lavender nightgown I was given by a friend who’d outgrown it, a gown 10-year-old me was enamored of because its silky nylon bodice with sheer chiffon sleeves reminded me of a similar Barbie doll gown I found particularly glamorous. There was only one fault with the lavender nightdress: it hung straight down from my shoulders, whereas my Barbie’s gown “nipped in at the waist, flowed out over rounded hips,” accentuating her every curve. I began to insist my gown needed a belt, and after much pleading, my mother—reluctantly—purchased me a yard and a quarter of matching lavender ribbon. I bloused the top of the gown over the ribbon belt, reasonably satisfied.

My original vision for staging this scene in performance was to wear a gown similar to the one described; then, as I told the story, I would raise my arms into the air and stand on tiptoe as a stagehand came out and laced me, grommet by grommet and tug by tug, into an old-fashioned corset. Though it proved impractical to realize, that’s still my preferred staging of the scene: the tale of the little girl glorying in the big girl nightgown, beauty equal in her mind to Barbie’s womanly curves, juxtaposed with a literal representation of the cost of attaining that desire. As she (innocently) embraces society’s ideal of feminine beauty, she becomes increasing restricted by the corset.

That image has been on my mind recently, now that I am almost three weeks out from a bilateral mastectomy and in the beginning stages of reconstruction. During surgery, after my natural breast tissue was removed, two devices called “tissue expanders” were placed between my chest wall and my pectoralis muscles. Essentially “baggies with ports attached” (my surgeon’s description), the expanders function as placeholders for future implants and, more importantly, slowly stretch the skin and muscle to accommodate them. What that means in practice is a series of appointments during which the doctor uses a magnetic device to locate the metal port and imprint the skin with an “X”-marks-the-spot. Then 100 milliliters of saline are injected into the expander through the port. These are called “fills,” and I will receive a weekly “fill” until my expanders reach their maximum capacity of 550 milliliters each, their size having been determined by the size of my natural breasts.

I’ve heard other breast cancer survivors refer to the expanders as the “iron bra”; some have compared the process of getting fills to having dental braces that are tightened at regular intervals. Both are fair descriptions, though between the expanders and the various pressures exerted by tight muscle fibers and swelling from the trauma of surgery, I feel more like someone has implanted an entire whalebone corset—rather like the one I’d imagined in my Barbie play—inside my body. Sometimes I feel like I’m wearing a strapless, corseted evening gown whose stays keep riding up, jamming into my armpits. My impulse is to want to grab hold and shimmy the offenders back into place, but it’s my own flesh and framework that has risen up to cause me pain.

~~~

So I’ve been thinking a lot about that little girl in her nightgown, the costs and trade-offs of my desire to have breasts, my choice to undergo reconstruction. Without it, I could shorten the whole process: I would heal faster, experience less discomfort. I cannot get my permanent implants until radiation treatments are done and I’ve fully recovered from them, so I’ll be living with my internal corset for six months or longer, if I can stand it.

More and more women are electing to remain flat-chested post-mastectomy, in part because the process is long and uncomfortable. There’s a definite declaration of freedom in that choice, and I admire women who make it. With my currently flat chest and super-short buzz-cut, I’m projecting what I like to think of as an edgy androgynous look. As a woman who enjoys playing with fashion and modeling, it’s intriguing to see this other version of me look back from the mirror. But I don’t think I’m prepared to embrace her long-term.

Seeing my altered body for the first time post-surgery was hard, though less traumatic than I anticipated. I’d heard of women who refused to look at themselves, or let lovers see them, for weeks or even months. Instructed by the surgeon to shower and remove my bandages 48 hours after my release from the hospital, I didn’t have much choice but to take the plunge.

Having both breasts removed, I think, made the changed topography of my body seem less, rather than more, shocking, since there was no immediate point of comparison between what was before and what was after. Seeing a flattened and grayed-out mountaintop removal mining site is devastating in part because of its contrast to the beautiful, rolling green hills surrounding it. But my chest had become an entirely foreign landscape, as if I’d fallen asleep in the Appalachian foothills and woken up to the western prairie. I was a little bumpy and not entirely flat, given the expanders and some general swelling; two reasonably symmetrical incisions sealed with a length of surgical tape bisected the memory of each breast mound. That was the phrase the reconstructive surgeon had used when he came by my pre-op station the morning of surgery, and it was the one gesture that had made me cry: watching him outline my natural breasts in black marker so he could remember their placement after they were gone. It was also my last sight of them.

~~~

I feel a strange blend of grief and fascination when I look at or touch my changed body. At first everything just hurt; I had limited use of my arms and needed help going to or from lying prone. As I’ve healed, the overall soreness has faded so that now there’s a distinct difference between the skin over the expanders, which is essentially numb, and everything else, still tender. I’d been warned I would lose most of the sensation in the skin of my breasts. Steve asked if the sensation was akin to how your face feels after a shot of Novocain at the dentist, and some areas are a bit like that. But a more accurate comparison would be to place a book on your thigh, and then tap on the book—you can feel the vibration of the tapping in your leg, but no direct sensation from your fingers touching it. When I got my first fill, I felt nothing when the needle of the saline syringe pierced my skin.

Perhaps I’m able, for the most part, to retain a certain level of detached curiosity because I’m aware the construction of my new breasts is a long process, and it’s still early days. It’s a little bit like writing: my first drafts are messy, uneven, and rarely look much like the final product, but their deficiencies are tolerable because I know I’m not yet finished. Knowing it’s a process helps me feel less disturbed by my bionic boobs’ current non-breast-like appearance. They’re still a bit Frankensteinian at present, with some discoloration from bruising, the odd swelling, and those infernal JP drains, whose tubes are sewn into my skin and descend down my sides to two plastic bulbs. I tuck the bulbs into pockets during the day and squeeze the collected fluid out of them each evening with my husband’s help. Sexy, right?

~~~

In my Barbie play, I follow the story of the lavender nightgown with the story of Cindy Jackson, who underwent more than twenty plastic surgeries in an effort to become a living Barbie doll. Together, the two stories were intended as a kind of cautionary tale. Just how high a price are we willing to pay to have our bodies conform to the hourglass ideal? The memory gives me pause. My eventual implants, whether fashioned from silicone or my own tissue, will be far more comfortable than the tissue expanders, though my new breasts will probably never regain much sensation. I hope that someday, instead of calling up the feeling of a corset, they will indeed begin to feel like bionic boobs, that they will become a part of me, imperfect but powerful reminders of my strength as a survivor.

Until then, I’ll just have to resist the urge to grab hold of the skin in each of my armpits and yank.

They’re Not “Just Boobs” to Me

December 9, 2016December 10, 2016Sandee McGlaun

“They’re just boobs.”

More than one well-meaning friend or acquaintance has uttered that or a similar statement in an attempt to comfort me, minimize the anxiety I feel as I face a bilateral mastectomy. I will willingly say good-bye to my natural breasts in the interest of prolonging my life; it’s the wise choice. But there’s no “just” about it.

They aren’t “just” boobs. They’re my boobs. My breasts are part of me. I have not, and will not, “use” them, it is true, for their evolutionary purpose, to feed a child or children. As such, some might say they are extraneous.

But they’re mine. And I like them.

And I grieve their loss.

~~~

I didn’t always like my breasts. They debuted, when I was a young teen, as small knots on my chest, literally: hard bumps arose underneath each of my nipples. I was embarrassed to ask my pediatrician to examine these buds, but he reassured me (and my mother) everything was fine. For years I worried I was “too small,” even after I turned seventeen and suddenly gained a cup size, perhaps a result of the hearty German fare I ate while an exchange student that year. I still felt my minimal cleavage didn’t quite balance out my womanly hips, that my nipples were too prominent.

And they were troublemakers, these breasts of mine. When I was in my late twenties, I found a lump. It turned out to be nothing but a benign, fluid-filled cyst, and some doctors in the medical center at Ohio State, where I was in grad school, drained it. That was the first of many more benign cysts, too many to count.

It was also the start of many years of creative commentary by various medical professionals. I’m a “cyst-maker”; I have “busy breasts.” Enough nurses and doctors expressed surprise at the number and volume of my cysts that I felt like a curiosity. One surgeon in Georgia, who I’d been referred to for draining yet another set of what one nurse called my “natural implants,” greeted me by exclaiming, “Why, you’re just a little bitty thing!” He waved a copy of my scans through the air. ”After seeing the size of your cysts, I thought you’d have great big ba-zooms!”

I didn’t, though I was slowly learning to appreciate them just as they were. Practically speaking, smaller breasts offered maximum wardrobe flexibility: I could wear low-cut or clingy tops without attracting unwanted attention, and button-downs never gaped. But I also finally realized they were, actually, pretty nice breasts. Kind of perky, actually. By the time I reached my early thirties, I’d have said they were my favorite part of my body.

Like many women, I’ve often struggled with body image and self-doubt. It took me more than half my life to love my breasts. Now I must let them go, and re-learn to embrace my body, post-surgery, all over again.

~~~

I know I am no more or less a woman with or without my breasts. My identity as a woman, my worth as a human, is not defined by the shape or size of my chest. Nor do I assume that breasts are universal signifiers for femininity, womanhood, or desirability. In fact, the way breasts are weirdly glorified and overly sexualized, especially in American culture, has often puzzled and annoyed me. I once argued with a man who insisted that breasts were always sexual. No, I replied. If I choose to walk out my front door with my breasts exposed, or with no clothes on at all, that does not necessarily constitute a sexual act; minus a display of express and clear intent, it’s definitely not a sexual invitation. I’m just naked, and we’re all, as the saying goes, naked under our clothes.

Something else I know: attachment is the root of all suffering. Yet I find it difficult not to be attached to something that is, well, attached to me. Front and center.

My breasts have been my conscious companions at the beach, suited up and sun-screened in a cleavage-baring bikini; on the figure-modeling dais, revealed in the service of a painter’s line, curve, and shadow; on the running trail, compressed and protected in a jazzy neon sports bra.

My breasts have brought me pleasure in private moments, sensual pleasure wrapped up in sensitive nerve endings and a lover’s tender touch, his open admiration. My breasts have brought me aesthetic pleasure, when I slip into a pretty dress that fits just so, hugs the curves of my hips and breasts in a way that makes me feel sexy and beautiful.

My breasts are not some idle, remote organ like an appendix, whose absence I’d scarcely notice. They are a daily presence and a source of pleasure, and I will miss them.

~~~

I will have reconstruction, and I’m grateful for that. I’ve talked to enough survivors, however, to understand the process is no picnic. And my bionic boobs, as I’ve come to call them, will look and feel quite different from my natural breasts.

I’ve been trying to find ways to reconcile myself to the coming changes. I’ve begun to try to re-frame the mastectomy in my mind: instead of thinking about losing my breasts, I focus on regaining my health. I’m saying goodbye to a cherished part of my body, but I am also saying goodbye to the cancer.

I’ve tried to imagine my breasts as being like an old friend, one whose friendship has become toxic. She was a perfect match in my younger years: we liked the same music, went to the same parties, celebrated good days and commiserated over bad ones. Then, she began to lash out, to drink too much; when I was around her, so did I. We had a great run, my old friend and I, but now—well, she’s not healthy for me anymore. I appreciate the good times we shared; I’m grateful and glad for her having been in my life. Even though it hurts, I know I have to say goodbye.

Still, my body isn’t a metaphor. Metaphors don’t go numb or swell with lymphedema. They don’t scar or press your chest with pain. They don’t change what you wake up to every morning, what you see in the mirror, for the remainder of your days.

I’m working on cultivating greater self-compassion and acceptance. I recently hired a photographer to document and celebrate my pre-surgery body, highlighting my bald head with a beautiful custom headpiece. And this time, after surgery, I don’t want to wait thirty years to decide to like my body, my (new) breasts. It won’t always be easy, but loving myself as I am is a choice I will endeavor to make every day.

The photos included here are a preview selection from the shoot described in the post: photos by Michael Wilson, Bohemian Robot Photography; make-up by Jolina Goad, Jolina does Make-up; bespoke headpiece by Sandra Eileen, Every Girl a Goddess Couture Headpieces.

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