Wednesday, January 27, 2010

Touch Me, Feel Me

Before surgery, I was unsure about how my reconstructed breasts would feel (and how I would feel about them). In talking to the many brave women who had preceded me into this strange new world, I gathered that I would lose a lot of skin sensation and that, while at first my implants might seem like foreign objects beneath my skin, I'd eventually get used to them. But that's about all the information I got. So, as a public service to all those out there considering prophylactic mastectomies (or any kind of mastectomy), I'm going to try my writerly best to describe for you as evocatively as possible how my breasts feel and what I feel (both literally and figuratively) about my breasts. (And if you are my dad or my boss or anyone whose relationship with me might get a little awkward if you continue to read this, I'd suggest here is a good place to close your browser window).

How My Breasts Feel

When I was younger, before I even had breasts to do self-exams on, my mother brought home a boob. It was, I realize now, a silicone implant. And hidden in it was a lump. It was a practice-finding-a-lump-in-your-boob boob. I have no idea where she got it. "Here," she said, handing me the thing, which I looked at with distrust. "Close your eyes and feel around and see if you can find the lump." I did. It was hard to miss. "Now," she said, "you'll know what to look for when you begin to do self-exams."

The whole experience terrified me. But it made a lasting impression. So much so that when I was finally brave enough to touch my breasts in a clinical way and actually perform a self-breast exam, I was horrified by what I felt. My breasts were FULL of lumps. I was barely out of high school, and I thought I was already dying of breast cancer. My boobs felt NOTHING like that practice boob. Mine were full of stuff, and whatever it was I was feeling in there scared the shit out of me. I realize now all that stuff I felt was the milk ducts and nipple areola complex and the various lobules and and other funny words for the things we ladies have in our hooters. But the radical disconnect between what I was expecting and what I found really left an impression on me, and up until the end, I was always a little fearful about what I would find when I would do my monthly self-exams.

I tell this story because now, after reconstruction, my breasts today feel like that practice boob I felt, lo, those many years ago (sans lump, of course). And I'm pretty happy with that. Gone are the weird structures, the lattice work of veins, the strange disc behind my nipple. Now my boobs feel uniform and consistent. There is nothing hiding in them; they are all form and no function. A lot of women resort to metaphors involving water balloons to describe the feel of implants, but in my experience (I chose to have silicone implants, which are touted for being more "life-like" -- though, as I've noted, they are in fact in no way like real life, being absent of all the fillings -- than saline implants, which, to me, did actually feel like water balloons) they are much more firm, more malleable, less distensive. But their most remarkable feature is not what they have but what they lack. I finally have the boobs I thought all boobs were supposed to feel like; how ironic the path I traveled to get them.

What I can feel (and how I feel) about my breasts

When women who have had PBMs told me that after surgery, they were almost completely numb, I had no idea how to process this information. After all, by its very definition, numbness denotes a lack of feeling. How are you supposed to imagine something that feels like nothing? But I still wanted to know so badly how it felt (despite the aforementioned absence of feeling) so I turned to dentistry. The times I've been numbed have all occurred under the bright adjustable lights in my dentist's office, so I tried to imagine what I felt there and equate it with what I would feel in my breasts. But, to me, the most notable thing about being numbed at the dentist isn't the numbness; it's the tingling sensation in my jaw as feeling returns. So, in my flawed logic, I sort of imagined my breasts would tingle. I know. But humor me.

My breasts, of course, do not tingle (and if they did, I would be concerned). But they aren't completely numb, either. I have almost full sensation from my nipples up; I can respond to touch on my sternum and in my armpits and along my sides. But you could put a cigarette out on the lower half of my breasts and I wouldn't be any wiser until I smelled the burning flesh. I suspect the position of my incisions (they are inframammary, which means under the fold of my breasts) has something to do with the total lack of skin sensation on the southern end of my boobs, and I don't have any expectation this will change. As for my nips (Dad, seriously, if you are still reading, stop), I do have some feeling (mostly the ability to recognize pressure being put on them by touch) if not any actual sensation. They continue to react to hot, cold, and excitement.

The strange contradiction about having breast implants and skin numbness is that though you cannot always feel your breasts, you almost always are aware of them. I'm five-and-a-half weeks out from surgery, and I have not yet gotten used to their obtrusive presence. I feel them every time I open a door, every time I stretch, every time I reach up to grab the cereal from the cabinet above the frig. Of course, it's not my breasts I feel -- it's my body reacting around them, and any movement involving pectoral muscles will move the implant, thus drawing my attention to it. Yes, they do feel like foreign objects, but I'm getting used to them. And before long, they will just feel like me -- a quirky part of me, but me nonetheless.

Which leads to my final point about my new rack. I was desperately worried that I would hate my new breasts, that I would look down on them and dismiss them as impostors. I don't hate my new breasts. I don't love them, either. But I neither loved nor hated my natural breasts. I accepted them. And that's what I've done with my reconstructed breasts. They are by no means perfect, but few things are. As long as I'm not actively at war with my body, at least emotionally, I consider this a victory.

I realize my experience (from the emotionally-scaring practice boob to the dentistry expectation to the sternum sensation) is uniquely my own. But I hope it might help others understand what to expect on the other side of surgery. After all, this is difficult to articulate (as demonstrated above) and tricky to explain to those who haven't felt what we feel (or don't feel, as the case may be). I may be physically numb in places, but I still feel whole. And that's as good an outcome as I could hope for.

Monday, January 18, 2010

Lessons Learned From My Mastectomy

It has been exactly one month since my mastectomy, and I've learned a lot in the past four weeks. Originally, I thought my blog posts after surgery would be rather straightforward: this is what happened to me on this day, and this is what you can expect on that day when you are recovering. But I realized quickly that my recovery is so very different from anyone else's, and that everyone heals at her own pace, that it wouldn't be very helpful to simply chronicle day-by-day changes. Plus, this blog hasn't been a forum for diarying as much as it's been a place for me to contemplate the bigger existential issues -- the "what does it all mean?" aspects -- of life as a previvor, and my posts here have been more like essays or ruminations on subjects than anything else. So I can't offer you a play-by-play of what to expect in the first month after your mastectomy, nor do I want to tell you every little detail about what happened during mine (mostly because it would be SO boring. Day 9: Slept. Day 12: Slept. Day 16: Slept). But I do think I have learned some things worth passing along, and so I proffer this instead. Behold: Five Things I Learned From My Mastectomy.

5) A mastectomy removes only your breasts; it does not change you in any other way.

This may seem like an obvious one, but bear with me. Before surgery, the mastectomy seemed like such a game-changing event, such a cataclysmic tear in the very fiber of my existence, that I imagined I'd wake up (if indeed I did -- remember, I was pretty convinced I was going to expire on the table) a completely different person. I also imagined that life after mastectomy would be very different. And to some extent, it has. But I also made the mistake of thinking that things would magically be better. This is a common mistake. Women do it a lot, especially when we want to lost weight. For example, say you want to lose ten pounds. When you imagine yourself at your goal weight, you aren't just you: you are not only thinner but happier, you always have good hair days, the lights always are green for you, and your partner always emptys the dishwasher. It's a Disney-fied version of your life, where the bluebirds alight on shoulder and the deer in the meadow pause by the brook to let you pet them. This fantasy occurs when we conflate the idea of happiness in one area with happiness in unrelated areas. And I fell into this trap before my mastectomy. I imagined that on the other side of surgery, life would be better: sunrises would be more brilliant, I would be thinner, people who are jerks would no longer be jerks, and my partner would always empty the dishwasher. Guess what? I haven't seen a sunrise (remember: all I've been doing for a month is sleeping), but I haven't lost (or gained) a pound, jerks are still jerks, and I just emptied the dishwasher all by myself. Which is fine. Because a mastectomy has nothing to do with the dishes. That's why I say a mastectomy does exactly what it's supposed to do; nothing less and nothing more. I recently saw a friend for the first time since my surgery and after we'd been chatting for a few minutes she look at me stunned and said, "Geez, you are exactly the same." And I understood the impulse. In fact, I remember thinking the same thing about this very friend after she'd had her daughter a few years back. Mastectomies don't change who you are any more than having a baby does, but they are such monumental, life-changing events you can't help but marvel that you come out the same person you went in. And what a relief! I know my friend meant what she said as a compliment, and I took it as such: she was happy to see that after everything I'd been through, I was still her old friend Steph. Just with new boobs. Which is exactly the only thing that has changed. As it should be.

4) Getting your teeth whitened hurts more than having your breasts removed.

I've allowed myself a few indulgences to celebrate my recovery from surgery. I've gone shopping and I've gotten an edgy new haircut (with bangs! The last time I had bangs, I hadn't even developed boobs!). But to really treat myself, I decided to get my teeth professionally whitened (remember: mastectomies do not whiten teeth, even if in your post-surgery fantasies your smile is suddenly sparklier). Big mistake. I expected discomfort the procedure (the dentist uses a tool called a "cheek separator" -- I'll leave it to your imagination what it does and how it feels) but I had no idea I would be in howling pain for hours afterward. My teeth, I've since learned, are particularly sensitive to whitening agents. My mouth hurt so much, I asked my husband several times to punch me in the face, because I was sure a broken jaw would both hurt less and distract me from my pain. It hurt to talk. It hurt to breathe (the air on my teeth triggered shooting pains). And the ironic thing was, it hurt SO much more than my mastectomy. The gift I gave myself to celebrate recovering from major surgery hurt more than the major surgery. The lesson is this: mastectomies are really no big deal. But think twice before you get your teeth bleached.

3) The worst part of surgery is the fear and anxiety I felt leading up to it.

It's hard for me now, a month removed, to quantify exactly how scared I was before my surgery. But it goes without saying I have never been more anxious or more fearful of anything in my life. And now: nothing. No fear. No anxiety. When I said before mastectomies only remove breasts, I was only half truthful: they also remove the anxiety. Nothing about recovery -- not the soreness, not the painkiller-induced fog, not the emotional vulnerability -- is as difficult as living life under the crushing weight of fear and anxiety. I know it sounds simplistic, and this is a statement that can only be said with the benefit of hindsight, but here it is: surgery isn't so bad. The shit I put myself through before -- now that was torture.

2) You get used to it.

The first time I saw my new breasts, I thought to myself, I'll never get used to seeing my nipple there (it is a lot closer to my face than it used to be). But guess what? I've gotten used to it. I thought, man, I'll probably never feel comfortable with the fact that I had a mastectomy. Guess what? I barely ever think about it. I thought that I'd never love my body again. But I already do. Yes, things are different. But I can accept that. I feared I would hate those changes. But instead I embrace them. After all, I chose to change. And I'm glad I did. Life under the threat of cancer was stifling. Now I'm free. I'm still getting used to that.

1) Life goes on.

Tomorrow is my first day back at work since my surgery. Physically, I feel fine. But I'm worried about faceplanting on my keyboard at about 2 p.m. After all, I've been pretty sedentary these last few weeks and my energy levels are still pretty low. But whether or not I'm discovered tomorrow afternoon curled up under my desk with a book under my head and my thumb in my mouth, it's time to get back to the real world. I had a dream recently that I went back to work and everyone was just sort of like, meh, whatever, there's a bunch of stuff you need to sign off on on your desk. And I was crushed. Where was the fanfare? Where were the hugs? But at the same time, I understood that this was OK, too. Because life isn't all about me and my breasts. Life goes on. And now my life can go on, too. But if my work friend do hug me, I hope they are gentle.

All of this is to say, simply, that there is life after surgery. It's mostly the same life you had before surgery. It's not that much better, but it's definitely no worse. There are much worse pains than the pain of surgery, and resilience and adaptation are partners in healing. But most of all, surgery changes only what it's supposed to: my mastectomy took away my breasts, my cancer-risk, and my anxiety and fear, but it didn't take away my personality, my sense of humor, my optimism, or my joie de vivre. And that, to me, is a very good outcome.

Saturday, January 9, 2010

Post Your Bra Color As Your Status Update, Change Nothing

Like many Facebook users, I watched this week as my girlfriends' status updates were replaced with one word colors, like "black," "white," and the occasionally more descriptive "purple lace." Unlike many Facebook users, however, I didn't get the invitation -- a chain email from an unknown source -- to post my bra color as my status update. I figured out what was going on soon enough (I'm so web 2.0 savvy) and decided against participating in the meme; it's not that I was embarrassed to tell the world I was wearing a white bra (and still am -- oh Natori sports bra, you are like my second skin, I'm stuck with you and you with me 24/7, doctor's orders) it's that I didn't see the point.

Only today did I learn that the point of this viral experiment was to, in the inelegant words of the invitation, "spread the wings of cancer awareness." Exsqueeze me? Baking powder? How on earth will cryptic status updates, most of which, I'm guessing, said "beige," raise awareness of breast cancer? If the "campaign" did anything, it raised awareness of what color bras my girlfriends were wearing. But mostly, I'm guessing, it just caused confusion. After all, this was a wink-wink-nudge-nudge girls' thing, no boys allowed, and the idea was to get men all intrigued about the colors and then when they figure it out they'll all get tiny erections and it will be like a big internet slumber party where the girls laugh and exploit their sexuality to get guys' attention. And, oh yeah, something about raising breast cancer awareness.

Call me a wet blanket, call me a party pooper, get out your trombone and blow the Debbie Downer wah-wah.(Please note, though, I'm not the first person to ignite the flames of backlash. Lots of others have commented on the inanity of the meme.) But I think this is, as NPR calls it aptly, slacktivism at its most offensive. Because, I hate to be brutal, but I mean, women with breast cancer, especially those who undergo mastectomies and don't opt for reconstruction, don't even wear bras. Because they don't have breasts. And women who die from breast cancer don't wear bras either. Because they are dead. It's like saying, let's raise awareness of hunger by updating your status with what you ate for lunch.

Obviously, I'm particularly impatient with oafish attempts at cutifying breast cancer. I've written before about my hatred of the pink ribbon, and this seems like just another hamfisted attempt to make cancer sexy (pink lace! hot!) while allowing people to feel like they are participating in something while actually doing nothing. As a card-carrying member of the double mastectomy sewing circle, I find the whole charade particularly silly. If I had more guts (I'm not officially "out" on Facebook) I would have updated my status as follows: "White. I'm three-weeks post-mastectomy. TMI? I'd rather tell you about my surgery than hear about your purple lace bra. Which will do more to spread awareness?"

The truth is, no matter how many people are "aware" of breast cancer, it's still going to strike and kill. Awareness is not enough. We need a cure. And that's not going to happen by posting our bra color for all the world to see. I may be cynical, or maybe just cranky (this bra is really very tight... and I wish I could just let the girls have a breather), but I feel like I have a right to comment. After all, what my bra contains -- breasts remade of silicone, breasts sacrificed for health -- is so much more important that what color it is. Oh, I am aware of breast cancer. I may have escaped its specter, but I live everyday with the bargain I struck to avoid it. I don't need status updates to remind me of that.

Tuesday, January 5, 2010

On the Nature of Boobs

What are boobs?

At the risk of this sounding like the trite introduction to a grade-school essay, let's turn to the dictionary, shall we? Merriam-Webster is a little vague. Sayeth he: breasts are "either of the pair of mammary glands extending from the front of the chest in pubescent and adult human females and some other mammals." The answer, in short, is that boobs are glands. Gotcha.

That's the dictionary definition. But do prepubescent boys fantasize about getting their hands on some glands? Do anxious middle school girls stare hopefully into the mirror, waiting for their glands to show up? No. They are both waiting for something else. If the dictionary definition of boobs defines them by what's inside, then society's definition of boobs defines them by what's outside.

Sure, boobs are filled with tissue and ducts and lobules (a word I swear I'm not making up). But only surgeons think of boobs that way. No construction worker has ever catcalled a chesty babe with the line, "Hey lady, I like your lobules!" To everyone else, boobs are the mounds of flesh and fat that fill out a sweater or substitute for radio dials in 80s movies (Anyone remember that one? "Tune in Tokyo"? Girls Just Wanna Have Fun? Sound of crickets chirping...).

The reason I'm thinking about this is because I've found myself wondering, do I have boobs? (Doesn't that sound like the title of a Judy Blume novel? "Are You There God? It's Me, Steph Wondering If I Have Boobs." That one isn't as well known as the one with Margaret in the title. Anyhoo...) Because here's the thing, according to stodgy ol' Merriam-Webster, I don't. Glands? Got those scraped clean out. Lobules? Negatory. Tissue? Zip. But, if it were construction season, I bet I could count on a few wolf whistles from the scaffolding. So, who is right? The dictionary men or the professional sexual harassers?

It's a bit of a philosophical dilemma. Sure, I just had a mastectomy. I had all of the inner-workings of my breasts scooped out. So, technically, I'm boobless. But then, I was restuffed. I was reconstructed (like a cyborg machine that had experienced technical failures). And now, lobules aside, I have those fleshy mounds teenage boys (OK. All straight men) salivate over.

So, do I have boobs?

I'd like to think I do. A lot of women in the BRCA community refer to their reconstructions as "foobs" (as in "fake boobs"), which, to be fair is both accurate and catchy. But as a descriptive term, I don't think foobs is going to work for me. Am I really supposed to have to remind myself (and others) every time I refer to my bosom that they are fake? Clothes shopping with a girlfriend scenario: "How does this sweater look? It is too tight around my foobs? You know, my fake boobs? Oh, you didn't know? Yeah, I had a double mastectomy. You had no idea? Well, yeah, they're fake! Fake! Fake! Fake!" I mean, isn't the point of reconstruction to pass as normal? Why continually draw attention to the fact that we're not?

And are my boobs more fake because they are made of implants? If I had used belly fat or ass fat or back fat or thigh fat, would they be more real? No lobules in those recons, either. But I think because there are, let's be frank, foreign bodies sewed into my chest, implant reconstructions seem faker than most.

But yet, and here's the thing, they are mine. I said it in the last paragraph: "my boobs." If I keep calling them fake, I feel like I'm not claiming ownership of them, like I'm disavowing and disowning them somehow, or explaining them away. This was my choice, and these are my boobs, and no matter what the dictionary might say, they feel real to me. And they have to be. I can't possibly live the rest of my life looking at my body in the mirror, dismissing my reconstruction, constantly reminding myself I had a mastectomy. That would drive anyone, even the most confident woman, to shame. I'm not going to spend my life hating my body, treating it with contempt and revulsion. My sense of self is strong enough to accept the choice I've made, the implants I have. They are a part of me now, and I don't want to draw unnecessary distinctions just because I'm missing a few lobules.

So you won't catch me calling these things "foobs." They deserve better than that, and so do I.

Sunday, January 3, 2010

On My Way Back to Normal

It has been two weeks since I returned home from the hospital following my surgery, and sixteen days since the mastectomy itself. In truth, it feels like it's been much longer, like all of that occurred many months ago. I guess that's because both so much and so little has happened since then.

So much: I feel almost normal. But to appreciate how phenomenal a feeling that is, you have to understand how far from normal I felt just two weeks ago. When I returned home from the hospital, I couldn't not remember I'd just had a mastectomy: my chest throbbed, my muscles ached, my arms hung lifelessly at my side, my energy was low, and my spirits were down. Every time I coughed or sneezed or laughed, I felt it: the tightness, the soreness. I couldn't do anything--couldn't crawl into bed (which required help) or read a book (I couldn't concentrate on the words)--without reminding myself that I'd just had my breasts removed.

Now, I find myself so often forgetting. My drains were removed last week, Tuesday night to be exact, and once they were gone, I felt so free. Everyone says that drains are the worst part of the beginning stages of recovery, and I don't disagree. But my drains did more than tug at my skin; they depressed me. Being tethered to that very visual reminder of surgery, being encumbered by the twice-daily routine of stripping and measuring, really stalled my healing, both physically and emotionally. They were weights around my neck, literally, and they were dragging me down. I felt instantly much better after the surgeon threaded them out of my incision; it was like a great burden had been lifted. I never want to see those wretched things again.

Today, I feel so normal, so back to my old self, I have to stop myself from doing the things I used to do, the things I'm still prohibited from doing, like sleeping on my stomach (will I ever be allowed to do that again?) or reaching up to the top shelf of my closet for a pair of jeans or opening the sliding glass door. It's like my spirit is healing quicker than my body, and I have to remind myself to allow it time to catch up.

I'm also, as of last Wednesday, off the painkillers. And in quitting them, I felt like I emerged from a fog that had descended so quickly and unexpectedly I hadn't noticed it until I could see clearly again. I could think! I could read! I could again rely on my acerbic wit! I appreciate what those magical pills did for me--they got me through some tough moments--but I'm glad to be myself again.

So little: Until last Tuesday, I hadn't wore "human clothes" (I'd come to think of my button-down pajamas and zip-up hoodies as the uniform of the invalid) since the night before my surgery and had left the house only on a very few occasions. Time moves so slowly when you are inert, and the days both seemed interminable and interchangeable. Since then, G and I have ventured out a lot, but we're not breaking any land-speed records. Per doctors orders, I'm still taking it easy, which means sleeping about twelves hours a day and spending most of my day horizontal, either reading or flipping channels. In the past two weeks I can honestly say I've done next to nothing, and yet I've come so far.

It's hard to believe so little time has passed--at least by the calendar--because I feel like I been through a lifetime of healing. I'm still not 100% yet, and likely won't be for sometime, but I'm on my way back to normal. And I can't wait to get there.