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.

Embracing Convalescence

March 10, 2009

My new favorite word is convalesce; it has a certain Victorian-era ring don’t you think? When I imagine what it means to convalesce my brain immediately conjures up Helena Bonham Carter. In my mind’s eye, she’s artfully  arranged on a fainting couch. The room is filled with overstuffed furniture and complexion-flattering sunlight. Behind her, sheer curtains billow softly in the breeze. Ah, to be Helena…

Okay, I’m not exactly Helena (and whether or not I’d really like to be is a bit of a digression) but I am intrigued by the idea of exploring convalescence, maybe doing some Gonzo-style journalism looking into what it feels like to be a convalescent. Being self-employed adds a scary twist to the “convalescent challenge.” The longer I do nothing, the longer my bank account starves. But money shmoney. With any luck, my trip to the world of convalescence will be brief, so I might as well enjoy it while it lasts. 

Since “blog time” runs a bit behind “real time” (for me at least), I admit I’ve already started my undercover investigation and, so far, I’m more than a little disappointed. I think the problem is that convalescence doesn’t look that different from my everyday life. Thus far, there’s been much napping, ignoring of the phone, and letting email languish in my in-box. Obviously, I’m not trying hard enough.  

In an effort to get my game face on, I took my dog for a long walk in the woods this afternoon. Walking in the woods seems like an appropriate Helena-like activity.  Of course, I often hike with my dog when I’m not convalescing–remember, I am a lesbian–so I had to take great pains to make this particular outing stand out in a meaningful (aka more sickly) way.

To that end, I walked more slowly, more thoughtfully, more like I thought a convalescent might. I even stopped for a few minutes to sit on a rotting log and soak in the view of a distant lake. I was pleasantly surprised to find that hiking like a convalescent was easier than I thought. Namely because my chest hurt like hell and the sutures securing the plastic tubing to my body (uncomfortable on so many levels) kept pinching and pulling my skin in ways that make me gasp and clutch at my sides. So, yes, I’d say today’s journey into convalescent-hood was a rip-roaring success. Tomorrow, I’m golden because I’m seeing my surgeon, a convalescent-worthy errand if ever there was one.

In the meantime, I’ve gotta talk with Mary about the possibility of a fainting couch…

Post-Mastectomy Blues

March 8, 2009

I’ve got the post-mastectomy blues, and they’re bumming me out. 

Here’s what I want: I want to be relieved the surgery is over. I want to be elated that my “cancer broach” is no more. Basically, I want to be more like my neighbor. (Since my neighbor hasn’t exactly agreed to be in my blog, let’s call her Ruth.)

Ruth is in her 50s. Her family history is sprinkled with breast cancer the way some people’s families are peppered with red hair or blue eyes. She’s one of four generations of women with doomed breasts. I think it’s safe to say that Ruth felt stalked by breast cancer most of her life. Last summer, when the diagnosis finally came, she jumped at the chance for a double mastectomy–no reconstruction, no regrets. Her attitude? Good riddance. On her first day home from the hospital, Ruth bounced over to show us her scars. Beaming, she was all praise for the surgeon, for her decision, for her choice to go without reconstruction.

Flash forward to a couple of days ago. I’m on my first tentative walk. Cradling my stunned chest. My 68-year-old Mother is awkwardly steering our 75-pound dog. Suffice it to say, I’m praying for anonymity. Ruth drives by. Sees us. Slows down. Flashes a huge grin. Tells me I look great (I don’t). Then, unexpectedly, tosses her head back and, with a raucous laugh, says, “you’re one of us now, we flat-chested chicks gotta stick together!” Then she rolls up her window and drives off. Pink-ribbon decal flashing. Here’s what I want–I want to rock my flat chest like Ruth, but I’m not even close.

Here’s where I am: I’ve been crying more than I’d like to admit. I cry mostly for my breasts, for the loss of something uniquely mine, for the violence done to my body in service to “health.” I cry for the lack of words I have to describe how horrifying it is to see dark red gashes carved across my chest where my breasts used to be. For how, in the absence of breasts, my rib cage looks bizarrely shaped and bony. For how, without breasts to balance it out, my stomach looks strange and distended. When I look down I only see what is missing. A voice in my head keeps asking me: why? Like an inconsolable child asking why something dear is no more. The voice isn’t soothed by the grown-up rationale behind the double mastectomy. 

I want to be happy-go-lucky. I want to be the “good” breast cancer patient. The chin-up, move-on, get-over-it person. Like Ruth, I want to throw my head back, laugh raucously at my crazy-flat chest, make jokes about having the perfect breasts at home nestled in their drawer, like a favorite outfit, waiting for just the right occasion.

But I know that’s not me. I’ve never been what you’d call a sunny or even an optimistic person. I’m okay with that. I like to set my expectations low and be pleasantly surprised when things aren’t a complete disaster. Deep down, I know this will be okay. Someday. But, in the meantime, I’m glad there are people, like Ruth, to show me what is possible. To forge ahead and send up a flare. Just in case I should ever want to join in the fun.