Recovery

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.

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.

Coming Home to Myself

Since I won’t know the answer to the chemo question for another few days, I’ve decided to use this “treatment lull” to get reacquainted with my body. As I’ve said before, thirteen years of yoga has made me hyper-aware of my anatomy. For the most part, this is a good thing. It helps me deal with a spine that has more twists and turns than a season of Lost, and apparently it’s quite useful for finding cancerous lumps. Yet, oozing awareness out of every square inch of one’s real estate has its downsides, especially when it comes to physical pain and trauma. So, last month, for the first time in a long time, I consciously checked out of my body.

I know lots of people distance themselves from their bodies. I know some people live entire lives unacquainted with their physicality. And, yet, I was surprised at how easy it was to say sayonara. In many ways, it felt like preparing the house to leave for a long vacation. But instead of checking the locks on the windows and putting timers on the lights, I busied myself getting in shape. For me, that meant doing LOTS of power yoga because it makes me feel invincible—something I knew I’d need for the trip. Then, the night before my double mastectomy, I took stock of my internal milieu, tidied up one final time, locked the door, and walked away.

Lest you think this is turning into some Sybil-like memoir, don’t worry, I didn’t go far. I just went around the corner; far enough that I could keep an eye on things. And, of course, Mary stood guard. Having a trusted sentinel at the gate made the disembodiment feel doable and safe. And, so, I became an observer of the process.

Like a medical voyeur, I sat back and watched things like the nervous resident jabbing my vein with a needle and Mary telling the drunk-with-power nurse for the zillionth time why the pregnancy-test protocol was a waste of everyone’s time. More importantly, the distance imbued me with a sense of calm in those final nightmarish moments in the operating room–before the anesthesiologist does his thing–when you can’t help but see things you don’t want to see. In the end, all things better observed than endured.

Immediately before and after my surgeries, the distance from my body was a blessing; but, alas, one can’t stay on vacation forever and, last week, I decided it was time to return home. Luckily, re-entry was easy. I simply rolled my yoga mat out and crawled on. Yoga is my fail-safe way to plug directly back into my body. Indeed, the transition occurs so quickly I almost get whiplash. That first day, I painfully arranged my limbs into the only pose I could muster–child’s pose–and I cried. My tears weren’t because my body felt ill-fitting after my long absence but because the body I’d abandoned the month before welcomed me back with open arms, no questions asked.

Since that day, I’ve been kicking the tires and, frankly, I’m shocked at the condition of my chassis. When I walked away, everything was functioning pretty well. My muscles were tone, my back was flexible, things were grooving. Yes, of course, I’m realistic; I didn’t expect my body to feel untouched upon my return, but I didn’t expect it to feel like someone had ransacked the place. While I was on my sojourn the muscles of my back turned to concrete, my arm muscles went AWOL, and my shoulders drifted forward, like settlers circling the wagons to protect their fort.

I am not a wuss. I usually get things up and running on my own. But my body was in shambles. I didn’t know where to start, and I could sense that mutiny was only one false move away.  It was time to call in reinforcements. I started with my Rolfer (for those of you who haven’t had the pleasure, Rolfing is a form of body work that releases connective tissue). To my relief, she put my shoulders back in their rightful place and reintroduced the front of my body to the back of my body—we agreed I’d obviously tried to back out of my body. A couple of days later a massage therapist began to demolish the concrete in my back. And this afternoon an osteopath gently steered several wayward vertebrae back into alignment. Yes, it takes a village.

And, of course, I’m gingerly returning to yoga. Restorative and Iyengar classes have taken the place of  power yoga, and I’m rekindling my home practice. Yoga channels me straight into the undertow of my subconscious. Normally, I resist–seeing the value in staying grounded–but these days I indulge by allowing myself to sink down into the deep. Breath by breath. Pose by pose. I tentatively explore the perimeters of stiffness and occasionally bump into the barbwire of pain. But I keep inching into territory that is simultaneously foreign and familiar because I’m on a rescue mission. I’m looking for pieces of myself that survived the looting. Specifically, I’m looking for that feeling of invincibility; I know it’s around here somewhere.

Embracing Convalescence

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

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.