Monday, April 8, 2013

Day 1,020: Look Good, Feel Better?

Something happens when you find out you have breast cancer. You see into an aspect of society that has always existed--our collective obsession with women's bodies and the way women look--and your perspective on the whole thing flips. Suddenly, you are reading Glamour magazine and you realize that the entire concept of women's fashion magazines is inane though you have been reading them for more than 20 years. This really hits home when you see a full page ad for the Look Good Feel Better program that helps women with cancer get makeovers and the ad claims that the program has become one of the most important ways that women regain confidence in themselves post cancer, and you realize that is probably true. And you think this is absurd, and wonder out loud, really? I think research into preventing metastasis or having a real, cognizant hope of remission would give me a lot more confidence than the right shade of foundation.

Or maybe that was just me.

I'm glad that there are programs that help women get their mojo back after cancer treatment. Lord knows you feel like an alien at times. But I have always contended that we focus too much on women's looks. I've written a lot about hair, about how differently I was treated when I was bald, about sexuality and femininity and all of that good stuff. But I don't know that even I have stated the following outright: Breast cancer has been turned into a beauty contest.

Think about it. When you are sitting there planning your memorial service, 9 out of every 10 messages out there is saying to you: Now's your chance! Express yourself! Play around with hair color! Get bigger tits! Change up your style! Save the tatas! Bald is beautiful!

Jesus Christ. Who CARES?

Can you name one other type of cancer wherein it is assumed that the vast majority of people suffering through it will spend inordinate amounts of type on cosmetic surgery? Reconstructive testicle surgery, anyone? You know, to even things out or get a bigger and better one? It used to be that women who had breast cancer underwent mastectomies. Reconstruction was not an option; neither was lumpectomy, nor chemo for that matter. Having one breast or no breasts was the understood outcome of the disease and while I'm sure it bothered some people, that was just the way it was. We have progressed beyond that, and yet I will never get over how strange it seemed to me as I pondered my fate and my potential BRCA status and my prognosis when people would talk about "getting better ones" or "making sure things are symmetrical" or "filling out your clothes."

Really? Is that supposed to be top of mind? What about choosing a surgery based on the most effective way to remove my cancer? What about honesty regarding recurrence (extremely rare in the opposite breast if you are BRCA-; not zero, but not high). How about recovery time, how it will affect my exercise routine or my ability to pick up my kids? One of the best things I did in the early days, when I knew that I was facing a very real possibility of double mastectomy as everyone assumed I would be BRCA+, was visit a plastic surgeon. After viewing all of the before and after pictures and hearing him describe the potential risks and the length and recovery times for surgery, I quietly told Gabe that I was not planning to do reconstruction. He nodded, admitted he would miss my breasts, and said it didn't seem worth it. I didn't have to follow through on that decision since I was able to have a lumpectomy, but I know I wouldn't have changed my mind.

I am not condemning women who get reconstruction, obviously. We all--and yes, it's a band of we, regardless of our differences in surgery or hormone receptor status--receive enough criticism about just about every aspect of our lives post cancer. I do wonder, however, if anyone ever questions the system that puts reconstruction out there as the de facto solution. I feel so badly for women who have complications from recon, and there are so MANY of them; I feel for them as they spend time every week getting their tissue expanders filled, I feel for them as they are experiencing pain and discomfort that went beyond their cancer itself. I understand why they do it. I just wish the rest of society wasn't so quick to assume the importance of it.

Let me give a corollary. I knew from day one that I was going to lose my identity-forming hair from chemo. I spent a lot of money on wigs as I predicted how it would effect me to be bald. And then...I was bald. And the wigs felt alien, and I didn't look like myself to myself. So I tried out the whole bald thing, and it wasn't as bad as I expected; I got used to it. And yes, I understand that the one loss (hair) is temporary, while the other loss (breasts) is permanent. I know that it is hard to find clothes to fit if you have no chest, I know that not having breasts is a loss and an amputation. But the point is that women often have no such ability to ease into the reconstruction decision. You often get the tissue expander put in during the mastectomy or at least start the process of recon at the time of cancer surgery. I wonder how many women would just get used to their breast-less selves if given more time to walk around in the world that way.

The answer, I think, is relatively few. And it's not because there's a right or wrong answer to the reconstruction question. It's because women with breast cancer are women who live in the world. And our world places a hell of a lot of emphasis on how women look.

The sad outcome is that we have turned breast cancer into another way that women can prove that THEY REALLY ARE BEAUTIFUL! REALLY!

And I wonder what the hell beauty has to do with this disease, or why I should be expected to care whether or not other people think I am beautiful. I wonder why so many people told me I was beautiful when I was bald, that I had a pretty face and a nicely shaped head and that "it's just hair." I wonder why so many people seemed surprised that my skin didn't turn weird colors, that I still laughed, that my husband was "still" attracted to me. No one says these things to me now that I look "normal," now that I'm no longer "sick." Those compliments were my consolation prize for having to stand so close to that good night. Because the assumption was that if I couldn't live a long life, I could at least live an attractive one, and I should be glad for that.

The problem was that I didn't feel that way. Now, I am not trying to sound ungrateful for the compliments I received. Receiving those compliments was better than not receiving them. I just want to put it out there that every time I said "thank you," I was hiding the fact that I really wanted to say "I don't care." I don't care if people pity me in the grocery store or think my head is too shiny and I don't care if one breast is a really different size than the other. I just want to make it. I just want my body to work again. It's no picnic to be treated like a freak out there in the world, so it's nice to have the opportunity to blend in, but you know what?

The fact that people treat others that way shouldn't be a cancer patient's problem. It is too much to ask women who have so much else to deal with to deny that they too live in the world, and the world they live in has very superficial standards for what makes women important. Women with breast cancer are potentially stripped of so many things that are RELEVANT--such as their feelings of youth, vitality, fertility, health, functioning sexuality, and invulnerability, that it is too much to ask that we also serve as battlegrounds for the irrelevant issue of arbitrary definitions of physical attractiveness. So, we usually accommodate the masses, because it is easier to do that than walk around with a big C mark on your forehead. But isn't the C the important part? Isn't this about the cancer, not the tatas? My life, not my hair? My prognosis, not my face?

Breast cancer is not a contest wherein you get to prove that some basic, stripped down version of yourself is still pretty, because who gives a fuck if you're pretty? There's nothing pretty about my reduced life expectancy, even if I make it out of this mess without ever getting mets. Oh to be a man, and have people ask you how you feel, rather than say some weird stuff to you about "inner beauty" and being "radiant."

Looking good never--NEVER--made me feel better. Was it preferable to looking like shit? Well, I guess. But looking like shit and feeling normal would have been much preferable to looking good and feeling like shit, which is how I apparently walked through cancer treatment. I walked around with my perky self and my skinny body (every time I see 119 on the scale and feel "fat" I remind myself how horrible 110 felt and I slap myself and go get seconds) and my bald head looking like some kind of warrior princess badass, or so I was led to believe, and feeling like a colossal pile of shit had just landed on me and wondering how I could dig myself out of it. I never wondered what eyeliner could make it look like I had eyelashes--I wondered how the hell anyone ever survived without eyelashes when not having them brings excruciating pain and dryness and discomfort to your life. Waterproof eye makeup might be nice, but it would be even BETTER to actually have your tear duct system work properly. And when people would compliment me on being thin, I could do nothing but shake my head. What a diet plan! The one where you can't eat anything at all or even be around food without puking and your hand shakes when you're feeding your baby food from a jar because you're so damn weak from the enforced skinniness!

Feel good, feel better. Or, more accurately, get used to the new ways that you can define feeling "good," since that is now relative, and move on with your day.

I was given all kinds of advice about dealing with baldness and many referrals to wig shops. And yet the most important advice I was given about femininity and sexuality and feeling desirable came from a sex-specialist MD who told me what kind of lube to use as I was going through chemo-induced menopause. Hair is superficial. Sexuality is innate; it affects your sense of yourself, your overall feelings of happiness. Feeling "beautiful anyway" wasn't helping me any if I felt like my body was turning on me.

Having someone tell me to draw eyebrows on my face would not make me feel better about being admitted to the hospital with a temporary heart condition or being unable to complete a chemo treatment due to low white blood cell counts. Wearing killer shoes never made me believe this beast couldn't kill me. If a teenage boy would laugh at me for being bald, I didn't care, because I would just think to myself, I wonder if I will live long enough to see my son become a teenage jackass? I cared if Gabe found me attractive, because that's important in a committed relationship, but I never really thought he wouldn't be attracted to me. I couldn't imagine that I had married a guy without his priorities in good working order.

When I had my head shaved (the first time, in the salon), I thought I looked like a boy. Gabe told me I was wrong, and that I looked beautiful. I have recounted that detail numerous times. Here is what I haven't articulated until now:

I didn't care.

I thought I looked like a boy, and I shrugged, and I stopped crying, and I realized that I was just going to have to walk around looking like that boy, goddamn it, because the alternative was much less appealing. I had been so, so sad about losing my hair, and that sadness was real. But then it was gone, and I looked in the mirror. I saw a young woman who was not yet 35. She had no makeup on, she was at her nadir chemo weight, and she hadn't slept more than 2 hours in 5 nights (TOTAL). She had small children, including a 1 year old who was just learning how to walk. She had a young husband, a lot of friends, living parents, an older sibling. She had a career where she needed to put herself in front of a lot of people and speak about obscure things. And she looked like a boy.

A boy who wanting nothing more than the privilege of growing old, someone who, in one of her/his most introspective moments, said this:

Who cares if people see me as cancer first and Katy second? How would I ever know that’s what they’re thinking, and why would it matter if I did? It wouldn’t change the fact that I need to do this cancer bullshit. It’s just not my problem. My problem, or one of them, is having cancer, and having to do chemo. I might get a whole gamut of reactions, mostly to my obvious cancer-sign of baldness, but that doesn’t change the situation. And it wouldn’t change if people didn’t know either. My struggle would be the same, even if people couldn’t see it.

What I couldn't see then, is that my defining struggle was in remaining MYSELF, regardless of what people thought--good or bad--about my body or my face. And that breadstick detail in that blog post referenced above (you have to read it--that detail alone makes it worth it)--that was all me. When others tell me I was brave back then or tell me that I look great these days, I might nod and say thank you. But inside, I am picturing this: a very sick, tired bald lady laughing her cancer ass off at her daughter after doing the correct, nurturing thing.

I see myself looking out into the world and finding something interesting to ponder, rather than looking at myself and finding something insufficient to criticize.


  1. I was bemused by a recent article in one of your women's style and fashion magazine about "Men: all their social insecurities" which essentially amounted to polls like, "how much do men worry about how they look on the beach?" "10% a lot, 35% a little if George Clooney is prancing in his trunks, 54% who cares what I look like as long as the hotties are hanging out!"

    Put in the context of surviving cancer it's clear that society enforces entirely different expectations on women. Maybe it's because we expect women to be the nurturers... you can't be sick because we need you to make us feel better!

    Screw that. Just survive cancer, looks be damned. No one who loves you will truly care what you looked like during treatment if you just live. Sure, people will be in denial about life threatening illnesses that make the bodies of their loved ones look like they've been through the wringer; who isn't afraid when confronted by human mortality? But when you're dealing with treatment's effects, the last thing on your mind should be how your appearance is affecting the coping mechanisms of those around you... unless you're in need of and want the distraction.

    Otherwise, just stay alive. Survive. Pull through it and thrive. Looking like you've been at death's door - well, that isn't that far from the truth now is it? I remember when you were first diagnosed, before surgery, before any treatment, you kept saying how strange it was that you felt so good and yet if you didn't actively choose to take steps that would inevitably make you feel ill, cut up, and like a piece of scorched earth, your life would be over in a couple years.

    Here's to you, whenever you are looking like hell, drawing every breath you can, and being alive. That is the Katy I would rather be with than a stepford-wived corpse. Breast cancer incurs real loss, and since Americans don't like losing, I think we try to gloss over that so much that we end up hurting those who suffer the most, the as bearers of this disease by denying them the right to feel the extent of that loss, with our insistence that they as long as they survive they present a strong, beautiful face and a perfectly-formed if surgically crafted body... because seeing them looking good is what makes us feel better about the fact that there is so little we can do in the face of the big C.

  2. I love Gabe.

    No, really, Gabe: you're a great guy. I love how you guys love each other. It's a beautiful love story.

    Katy, I am always so honored to know you and your mind. And I am always so grateful that you continue to survive and tell your story. I hope with all my heart that it's a story that lasts at least 4 or 5 more decades.