Of All The Hair I Lost…

Of all the hair I lost, I missed my pubic hair the most.

I know a lot of people go to great effort and endure significant discomfort to remove the hair in their nethers. I briefly tried shaving once a few years ago, and I didn’t get the appeal. When after chemo my pubic hair shed alongside all the other hairs on my body (exception: seven eyelashes), I’ve never felt more profoundly naked.

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Minimal eyebrows, maximum cheeks
Losing my eyebrows was a close second. When I was first diagnosed, I knew I’d lose my head of hair; I knew, eventually, I’d lose my breasts. No one warned me that, for a while at least, I’d also lose my face.

As a born blonde, my brows have always been light, especially in summer when they’re bleached by sun exposure. I usually fill them in a bit with a light brown pencil, lest it appear I have no brows. For the month or so that I did, in fact, have no eyebrows, I almost couldn’t recognize the pale, perpetually startled face in the mirror (an effect enhanced by my having the cheeks of a puffer-fish, courtesy of steroids). Eyebrows are a key factor in facial recognition, according to a 2003 study conducted by behavioral neuroscientist Javid Sadr: study subjects asked to identify fifty famous faces in digitally altered photos could ID the celebrity only 46 percent of the time when the eyebrows were absent. Small wonder my browless visage looked unfamiliar, even to me.

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The borrowed wig
Losing the hair on my head bothered me least, which is probably why I never opted for a wig. I tried them on twice. The first time, I borrowed a short wig from another survivor so I wouldn’t have to take my new driver’s license photo bald. It was a very nice wig, but the weave was thick, and I’ve never had that much hair in my life. I felt like a fake.

Later, a friend of mine invited me along to visit her hairdresser’s wig shop in Lynchburg while she got a haircut. I found a few wigs there that I felt more comfortable in; they were constructed differently and better mimicked my naturally fine hair. I couldn’t decide if I should be comforted or alarmed that the one we all liked best was an angled bob—especially in gray.

My chemo had already concluded at that point, though, and I was hoping my own hair would soon return. Plus, it was hard to imagine asking my doctor for a prescription for a “cranial prosthesis” with a straight face—the term most insurance companies require for coverage.

Thankfully, my various hairs have begun to grow back, though the universe has had a great sense of humor about the order of things. The first place I detected stubble was on my legs, specifically my calves. Seriously? I thought. The first hair to come back is the hair I deliberately shave off several times a week?

img_0829Hair also began to grow “back” in places I didn’t remember having hair before. Like the front of my neck. Large downy patches on my cheeks. As a fine fuzz began to cover my scalp, tiny hairs also outlined the helix of each ear in a soft halo. I know most humans, women included, have a layer of fine facial hair, but I don’t recall mine previously having been quite so thick.

The verdict is still out on the color of my incoming head hair. My mother thought the initial peach fuzz looked light, “like the white-blond hair you had when you were a little girl,” she said. I wish. Steve thinks it’s brown. I definitely see some lighter highlights, but I’m guessing they’re gray. If I’m lucky, they’ll be that pretty, glinty, silvery gray some folks get. And texture is a real toss-up post-chemo: hair that was once straight often comes in curly; curly hair grows in straight. Since mine is maybe yet a quarter-inch long, the only texture it has at present is soft and fuzzy, like a velour jacket. My head seems to invite a lot of rubbing.

img_0837As my eyebrows have returned, I’ve stopped having to draw them on from memory (tricky to get even, easily smeared). They’re coming in the same light-brown, taupe-ish color they’ve been since college. It’s nice to see a glimpse of the familiar when I glance in the mirror, instead of a surprised alien.

And yes, it’s a relief to be less bare “down there.” I’m told there are wigs, called merkins, available for one’s nethers; movie stars sometimes wear them in nude scenes for a little extra coverage. But though I felt unduly exposed, I can no more fathom going to the trouble of attaching extra hair to my crotch than I can fathom enduring the pain of waxing it bare. Besides, according to an article by Ian Lecklitner on the Dollar Shave Club website (oh, the irony), all of our naturally-occurring human hairs have an evolutionary purpose: eyebrows, in addition to identification, are “ergonomically engineered” to protect the eyes from moisture and debris; pubic hair helps to foil bacteria; head hair serves as insulation. So I’m glad, for the most part, that my follicles are up and at ‘em again.

Though I do wish someone could explain just what evolutionary advantage I’ve gained by having fuzzy ears.

 

As Good As It Gets!

The good news: when I went in for my second “fill” today, I was able to have one of my JP drains removed. Here I am, happily saying goodbye to it:

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The length of tubing stretching from the open end in my left hand to the fingers of my right was what was inside my body–yikes. Makes we wonder where, exactly, it all wound around.

So that’s the good news. But the BEST news is this: my pathology reports from surgery came back, and I am officially cancer-free! They found NO cancer cells in either breast or in lymph nodes. None. Nada. Zilch. Hooray!

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Receiving the report makes for a great start to the new year. This is me enjoying a celebratory Starbucks. Cheers!

I will still undergo radiation treatments, as one final precautionary push-back against the possibility of local recurrence in the skin or area lymph nodes. Radiation will start in another three weeks or so. In the meantime, drain #2 will likely come out within the week (which may, on its own, be enough to warrant a second celebratory latte!).

There are no guarantees; there never are in life. But in this context, on this journey, today’s news is genuinely as good as it gets. I am humbled and deeply grateful.

Please celebrate with me by hugging someone you love, and telling them how much they mean to you. Happy, happy new year, all!


Coming soon: more thoughts on hair, an homage to husbands, and some new ideas for doing good to feel good in 2017. Thanks as always for reading!

Post-Mastectomy: The Lay of the Land

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Barbie show

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.

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Equipment tray for my first fill

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.

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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.

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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.

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My edgy androgynous look…?

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.

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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.

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JP drain at work

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?

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 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.