Sunday, December 27, 2009

On Healing

It has been nine days since my surgery, and I am well on my way to recovery. I'm not there yet, and I likely won't be for sometime, but I can see indisputable improvements every day. For example, my new breasts were, at first, terribly bruised, like they had gotten in a fistfight and lost. But now, there is only a slight patchy yellowish discoloration where the deep purple bruises once were. That's a lot of progress in just nine days.

But healing, I've come to realize, is both physical and emotional. And it's the latter I want to write about here.

Not to toot my own horn, but I can confidently say I tried as much as humanly possible to be emotionally healthy before my surgery. In addition to keeping this blog, which has been an indispensable outlet for working out my feelings, I've been in therapy since I received my genetic test results in April, I've been attending support meetings and networking with other BRCA+ women, and I've thought and I've talked and I've philosophized and I've explained and I've listed the pros and cons and I've imagined worst-case scenarios and I've developed a mantra and I've come to peace with the genetic mutation and my choice to have surgery. In short, I was very deliberate and thoughtful in my mental preparation; I went into surgery last Friday confident. I came out of surgery something different.

I'm just going to put it out there: I'm sad. This is really hard. And what makes it even harder is that almost no one in my position talks about feeling down after surgery; they all say, No, I never felt regret, I am 100% happy with my decision. And don't get me wrong, I do feel unburdened from a terrible weight. But am I 100% happy? No. I'd say I'm 80% happy, 20% sad. That's a pretty good ratio, but still, how do I deal with the sad, especially if admitting I'm sad undermines the confidence and bravery and all that heroism shit everyone was complimenting me on?

Here's the thing. Last Friday morning, I was a BRCA+ woman who was going to have a double mastectomy. By Friday afternoon, I was a BRCA+ who'd had a double mastectomy. I went from theoretical to actual in just four brief hours (hours that I was unconscious). And I'm having a really hard time reconciling my new identity. On Wenesday, G and I went to buy a post surgery bra at Nordstrom (I recommend the Natori sport bra, for those in the market for such things). I knew what I was looking for but couldn't find it, so I approached the sales woman at the register of the lingerie department and said, "I just had a double mastectomy and need to buy a bra." And then I sort of froze; that was the first time I'd said it out loud. It sounded so weird, so unbelievable. I just had a what? A double mastectomy? You've got to be kidding! You didn't even have breast cancer! Whaddya crazy?

And it's funny because before my surgery, I was so angry when people would question my choice, probe deeper into why I'd chosen something so radical to prevent a disease I might never get. And now, at least temporarily, I hope, it seems like I'm one of those people. What'd you do that for? You must a lunatic! And that's what's making me sad. I can't quite get my head around the fact that I've done this. It's not that I regret my choice; it's that now I have to learn to live with it.

Sometime last week, which day I cannot recall since they all seem the same, my family and watched a BBC program called "How to Look Good Naked." The woman featured was a young Brit who'd battled breast cancer and had a mastectomy (without reconstruction); she wasn't comfortable in her new body, and the show was designed to rebuild her confidence. She was a sympathetic subject. Poor girl! She'd had breast cancer! And so young! And to lose her breast like that! So tragic! As I watched the show, a lump grew in my throat; she'd had a mastectomy, I'd had a mastectomy. Whoa. If I could have gotten up off the couch without assistance, I would have run to my bedroom and burst into tears. Instead, I sat there and tried to process my feelings. I realized I'd joined a club I never intended to be a part of. From this moment on, I'd never not be a woman who'd had a mastectomy. Even many years from now, when I'm over it and I've healed and I've gotten used to my new bosom, I'll still always be a woman who's had a mastectomy. That's when the permanence of my choice struck me. There was no undo. I'd been changed, and there was no going back.

And maybe that's why some people don't go there. They figure, what's the point of tears? They won't bring my boobs back. So forget that and look on the bright side. And, hey, I'm an optimist, so I totally understand that impulse. It's hard to acknowledge any negatives at all, especially when you feel so persecuted for your choice. It's like doing so gives the doubters fodder. But I think I would derail my recovery if I didn't acknowledge this. I'm not going to put my finger in my ears and say "LALALALALA I can't hear you." I don't think I can heal fully if I avoid the ugly and unexpected emotions of my post-surgery life. That's why I don't want to bury my head in the sand now. I need to get this out: I'm sad.

Now I want to be clear. I'm so glad I had this surgery. I would do it again tomorrow. I could not live my life with the threat of cancer looming over me, never knowing when or if it was going to strike. And I couldn't live a minute longer with the crushing anxiety that had so consumed me in the last few weeks and months. So it's not that I wish I could go back and do it differently. It's that, just as coming to terms with being BRCA+ took a lot of hard work over many months, so too will I have to work hard to come to terms with being a woman who gave up her natural breasts. This entire process has been about adapting to new identities, and I trust that in time I will learn to accept my post-surgery self. But I'd be lying if I said everything is puppy dogs and rainbows on the other side of surgery. Now that the initial elation of simply being alive has ebbed, I'm left with some pretty complicated emotions I've got to work through.

I envy those women that say, Nope, never gave it a second thought, nothing but totally thrilled to have gotten rid of my breasts. But I am not one of those women. And I hope, if nothing else, this blog has proved I'm not afraid to tell it like it is, even if it's ugly, so take this not as a caution to women considering this surgery -- I am not saying don't do it (in fact, I'd still say, do it, sister!) -- but as gentle, completely honest advice: when you are emptying your drains, cleaning your incisions, or applying your gauze, don't forget to stop and attend to your emotional wounds too. They may be deep or there may not be any at all. But don't ignore them for fear of appearing weak or fickle. Acknowledge them and work through them. And in time, they will heal, too.

My physical healing will take months; the psychic healing could take much longer. But I'm confident I will recovery fully in both areas. But no matter what, I'd rather battle a little postpartum blues (or maybe it's PTSD?) than cancer. So as long as I keep that in mind, I know I'll come out of this OK. And you will, too.


  1. Hi Steph! Big hugs!! I only skimmed and will re-read. But PTSD for sure is a possibility. You're not alone. I've been dx'd with it. A new term, Previvor Post-Op PTSD (PPOPTSD). Love, Julie G

  2. That was me above. I read it all now. Can I share this on Facebook or my blog? It's like you wrote my words for me. The blog, preparation, sadness, all of it. I also felt like I was the only one feeling down after surgery (and even still now). I remember still feeling that way when I read you woke up relieved, and whenever I read it from other post-op previvors. I don't think I've felt any relief yet. My story is different and this is about you now. I just wanted you to know I understand. All the firsts may be hard (t-shirts, bathing suits, public etc.) But it's still so early for you. I think your emotional healing will be much more swift and "complete" than mine. Thank you for your last line. You too. Hugs and love, Julie

  3. Thanks for your kind words, Julie. It's just such a shitty thing we have to do to protect ourselves from our mutated genes that it's hard not to feel sad because let's face it: this sucks. I'd be honored to have you share this on facebook. Just don't use my full name because i'm not totally "out" about everything on there. I'm glad to know I'm not the only one who's blue. It is like I'm in mourning. Time will heal, but right now it's hard.

  4. Posting this *is* brave! Thank you for be honest about the complexities of your feelings. I find it helpful, as I imagine many others will too.

  5. I'm here to help eliminate the 20% of sadness. I love you and I'm proud to be married to such a brave lady!


  6. I'm just eight days away from my double and I am sad too. And still angry. And I think I always will be. Relieved, sad and angry all at the same time. I've come to accept the uncertainty and the ambivalence so long as it doesn't prevent me from doing that which I feel I have to do. Thank you for your candor. I know where you're coming from.

  7. Steph,
    I can't thank you enough for having the courage to write this very candid, truthful, and revealing entry. I also can't thank you enough for being willing to listen and share with me about these issues.
    These emotions that so many of us probably have shouldn't be the "elephant in the room". I had my mastectomy almost 5 weeks ago and I am sad, I am angry, and I am scared and to add to it, I feel guilty for having any of those feelings. Maybe if more of us follow your lead and choose raw honesty, regardless of how hard it is, we could not only help ourselves, but others too.
    Healing will take time and these feelings may arise through various points throughout our lives, but we are alive (as you said). We just need to remember that it's okay to have these emotional experiences and that sometimes we need to indulge in a cry or two...or many more!
    You are brave. You are beautiful. You are an inspiration. You will be okay - we all will!

  8. Hey Steph - I'm a few steps behind you in the PBM area, but having gone through the hyst/ooph, I understand everything you are saying. I think its perfectly natural to feel sad about what you've gone through, it's normal to mourn the loss of a part of you that you aren't going to get back. Yes, you saved your life, yadda yadda, but our lack of real choices here sucks, plain & simple. I still think you're doing a wonderful job of dealing with all of it, and like everyone else said, I too, appreciate your sharing your experiences. Hope the sad doesn't linger too long.. will be thinking of you.

  9. Steph,

    You are a brave woman and a prolific writer. You wrote to me when I discovered I was BRCA+ and I've been following your blog ever since.

    Don't beat yourself up for feeling sad. All emotions are valid and I think it's perfectly normal to lament the loss of your breasts and the fact that you had to have this surgery to save your life.

    I especially identified with when you said you'd always be a woman who had a double mastectomy. I struggle with the fact that I'll always be a woman who developed ovarian cancer because of this damn gene mutation. I will also need to make a decision about what to do with my breasts in the not-so-distant future.

    Just because you're sad and express real emotions doesn't make you any less of a strong, inspirational woman. I appreciate you sharing your experiences with us. I wish you strength and health as you heal - both physically and mentally.

  10. the "security code" thing i had to enter to post your blog on Facebook was "been spared". Interesting. Julie G

  11. Nicely written. This reminds me of another essay about expectations that we should always be positive and optimistic when something bad happens to us:

    Attempting to see the bright side of things is great. Looking down on yourself or others for not being able to do it every minute of the day is not. Sometimes, pain has to be acknowledged.

  12. Stephanie...I still have trouble saying I had a prophylactic mastectomy. Your feelings are real. Thanks for writing your blog...I really enjoy reading it.

  13. So I figured, what the hell, I may as well go back and read some back entries in your blog (it's one of my favorite BRCA-related blogs, to be honest!)... and this entry really stood out. As I'm sure you've seen on my own blog, I'm dealing with a lot of the initial emotional crap after testing positive... and I am wondering where are all the other people who felt like crap about it?! I feel like SO many people are like, "Yeah, it was great, I don't regret it, woo!" and... while I will have a PBM and obviously it's the right decision for me, it's going to suck. I'm sad. I'm angry, I'm whatever... and I feel like too many people paint it in such a positive light - and it makes those of us with a LOT of feelings feel weak. Point being, I'm super appreciative of your honesty, particularly in this entry.