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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.

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.

Puppy Love

I volunteer at the animal shelter every Wednesday, and I’m embarrassed to admit that it’s the highlight of my week. To be more honest–it’s somewhat of an addiction and I find that I’m in greatest need of a fix when the breast cancer demons come a’knockin’.

I started out in the basic, entry-level position of dog walker. For two hours a week I’d work my way down the seemingly endless row of chain-link and cinder-block kennels. Stopping in front of each cell, I’d lift the latch, crack open the door two inches, and squat down to lasso the head that inevitably came pressing through, its owner starved for the sweet taste of freedom. Droopy-eyed basset hounds, yappy terriers, mastiffs as solid as coffee tables, if it had four legs and a tail, I’d walk it.

I loved the job but the title was a bit misleading since it was the rare inmate who behaved well on the end of a lead. A leash-trained dog meant we were both rewarded with a quiet stroll through the woods behind the shelter. Not too fast. Not too slow. Stop. Sniff. Proceed. But most of the dogs had the manners of baby chimps and it was all I could do to steer them into one of the shelter’s small, enclosed play yards. Once inside and untethered, the dogs pinballed around like kindergartners on a sugar high. When I could grab their attention, I lobbed tennis balls and flung Frisbees. When I couldn’t, I scooped poop and laughed at their sideshow antics. Each yard had a hard, white plastic lawn chair. And, on some days, by the end of my shift, when I was tired, or cold, or covered in some mix of shit and mud, I’d give in and sit down. And, if the dog was particularly shy or nervous, he would climb into my lap and we would contentedly hold one another.

In early January, I was promoted to adoption counselor. While I adored walking dogs, I loved my new gig even more because a) Bloomington’s winter weather had turned the play yards into mud-wrestling pits b) I got to see animals leave the shelter, which was a nice twist, and c) adoption counselors were in short supply, meaning I could show up anytime and work. And that’s what I did, especially in those awful, slow-motion days of early February following my diagnosis. Unfit company for humans (meaning Mary), I’d get in my car and drive to the shelter. With dozens of bellies to scratch, ears to ruffle, and sad eyes to gaze into, moping about my tumor was not an option. Nothing chased gloom-and-doom thoughts away faster than the sound of three dozen dogs barking at once, their sharp staccato voices pleading “look at me, look at me.” 

One cold Saturday in early February when I was feeling particularly despondent and fragile, I fell in love with a puppy named Crandle. He was white with a few shakes of pepper sprinkled across his back. The size of a small clutch, he was content to snuggle in my arms. I flirted with the idea of calling Mary to come in and meet him. Ever since I started at the shelter, I’d been lobbying hard for a second dog, but I knew that a 10-week-old puppy was a horrible match for our aloof, 7-year-old boxer/lab; plus, with surgery looming, the timing couldn’t have been worse. Just for fun, I tried a couple of basic puppy temperament tests on him, holding him aloft in one hand. He passed with flying colors, his droopy little body staying limp, his eyes gazing at me unconcerned. Next I hugged him toward my chest, and gently rolled him over. He started to kick a hind leg in protest, but quickly relinquished his belly. Knowing he would be a great dog–for someone else–I held him, football style, in one arm while going about my business. The next time I arrived at the shelter, he was gone.

He was hardly the first or last dog to steal my heart. I fall in love once a week without fail. After Crandle, I gave my heart to a sad, 110-pound yellow lab named, of course, Marley. Then Franklin, a scrawny black beagle mix who scrambled to occupy any nearby lap. And, one of my favorites, Miner, a golden retriever/shar-pei puppy who bounced along on his front two legs, his haunches atrophied from a birth defect. But love at the shelter is short-lived–the ultimate lesson in nonattachment. The harder you fall for a dog or cat, the more determined you are to find it a good home. And, if you do your job well, chances are you’ll never see that sweet face again. Well, with at least one exception. One day at the shelter, shortly before my surgery, a tabby kitten crawled into my lap and refused to leave. He was so light, so small, so un-chimpanzee-like, I called Mary. The rest is history. But I still think Bindi and Emma would welcome another dog some day, so I’ll keep my eyes peeled…just in case.

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“O” My

Wow. How weird was that?

Thanks to everyone here for your support and faithful viewing! 

Overall, I was happy with the show but (I must admit) a bit disappointed with the editing, which made my segment feel a little disjointed. Here’s what I was trying to get across: There were two things Dr. Oz said that stuck with me that fateful day in the surgeon’s office. One was about being the world’s expert on your body. Yes, good. But the second point was about the importance of hearing your doctor say the words “I’m sorry.” I explained how Mary looked the surgeon in the eye and asked  him to say that he was sorry. I explained how the minute he apologized, the energy in the room shifted from confrontational to compassionate. And that hearing him say he was sorry is what allowed me to release my anger and see him as a human being who’d made a mistake. Well, the editors kept point #1 and spliced it together with the tail end of point #2, which didn’t make sense to me. All of a sudden I went from feeling like an expert on my body to releasing my anger. Wha? I know I’m splitting hairs here, but, in a perfect world, I wish there’d been time to get both messages across. But that’s okay…the television experience was a hoot, and we came home  with a suitcase full of neti pots and “O” swag. If anyone missed the show and is feeling left out, check out an awful picture of me and read my sad story here. 

Stranger Than Fiction

Believe it or not, I’m appearing as a guest on The Oprah Show tomorrow, May 12th. The show is a final tribute to Dr. Oz, and I’m on talking (very briefly) about my botched mastectomy. Might as well make lemonade out of that awfulness, right? I know, I know…why the hell haven’t I blogged about this? Especially given that Mary and I flew to Chicago two weeks ago to tape the show!!! Well, because I signed a strongly worded legal document agreeing not to blog, write, or otherwise report on my “O” experience. So, no, you won’t be reading any behind-the-scenes “O” scuttlebutt here. And, hopefully, this post won’t land me in hot water. BUT I wanted to let y’all know in case you wanted to tune in and share in this very surreal experience with me.