Did you know there were such things as stick-on nipples? Like truly lifelike 3-D, flesh colored (Bronze, Almond, Ivory or my personal favorite, Tawny) nipples, that you can put on like jewelry and pretend that you are a normal woman again. (Putting aside for now that there just might be more than four flesh colors out there in the world.) And never mind while I don’t really know what color Tawny is, but who wouldn’t want a little Tawny in their lives?
I’m getting ahead of myself. First, sincere apologies to the great Pink Floyd for my post’s title, but I thought that song lyric had a slightly more positive feel to it than my other working title: Guys, I Hate My New and “Improved” Boobs.
It’s a common misconception that reconstruction following a mastectomy is akin to getting a “boob job”. Not so much. Yet I was unprepared…
And to be fair, I don’t really hate them. That admission would make the rejected title a little too “Coming up on the 11 o’clock news: Local woman who doesn’t have breast cancer has her boobs removed on purpose, and now hates her new, very expensive boobs. What you need to know!” Salacious, yes, but ultimately not quite accurate. Although maybe. This is all about making informed decisions, right?
Now that said boobs very most likely won’t try and kill me (whew), I can move on to other neuroses about them. Primarily how they look and feel, to me.
This has been a pretty difficult post to write. Probably not surprising, but getting this personal was not even on my radar. And even though both Bill and I have talked a lot about my breast surgery here, we haven’t talked a lot about my breasts. I know we’re all friends here, but as you can imagine, it’s an incredibly intimate and personal subject and makes all kinds of “but we like our privacy, Anne..don’t do it” bells going off in my mind and body. I’m going to ignore those noisy bells right now, though. So fair warning–if you’re at all related to me, you may want to stop reading at this point. Truly I won’t be offended, but do feel free to proceed at your own risk. 😉
Even if you and I didn’t know each other, though I’ve decided it’s more important to shed light on this apparently taboo subject, even among doctors?!? Yes, doctors. The ones who are supposed to tell you as much as humanly possible about the life-altering surgery you’re going to be having. Women who may be considering a preventative bilateral mastectomy need to know what to expect, about everything.
I’m talking about nipples, folks. And, if that word makes you even the slightest bit squeamish or feels like TMI, see aforementioned warning.
The resulting numbness that comes free of charge with a mastectomy, like a lame prize in a cracker jack box, should not be swept under the rug, or taken lightly as not being that big of a deal. Yes, apparently some doctors actually think that.
This issue needs to come to light so women and their doctors can have open and honest discussions about it. When we feel more free to share openly and honestly, that perceived shame goes away as we realize there are others who’ve experienced what we’re experiencing (see also: depression and infertility). That we’re not ever alone. Someone, somewhere can always relate, even if we don’t know it, but it can really help the sharer. That would be me today.
First, some background: The surgery I had was a prophylactic bilateral, nipple sparing mastectomy. What’s that hashtag #freethenipple? Well, I’m perhaps not going to go that far (at least not on purpose), but I do want to talk about their importance, at least to me. I was a good candidate for nipple-sparing surgery since I 1) didn’t already have cancer and 2) was basically going to be staying the same “bra size”. It is only now, post-implant surgery, that I’ve learned NS is a bit overrated. Many doctors think it’s better to leave them when possible for a multitude of reasons, but ultimately, that it’s best for the patient. I believed that too. I felt having them would help the very unfamiliar feel a bit more familiar. And maybe they do for many women, but I’ve also learned that many, many more don’t find that to be true for them. For me, my nipples feel a bit like lipstick on a pig, but that the lipstick looks like it was put on by the pig!
Important note: the surgery brought my lifetime chances of getting breast cancer to about equal to the general population, but not LESS! Having had the vast majority of my healthy breast tissue removed, you would think those chances would be way closer to 0%, but keeping your nipples does slightly increases your chances. Still, I’ll take the 12-15% odds, which I’d play in Vegas over the 85% likelihood prior.
We were recently talking with some close friends who asked, “so how are your boobs?” (And, yes I realize that can be an unusual topic for dinner conversation.) For perhaps a split second I thought about glossing over how they actually are. Saying they were great and moving on to a different topic as that’s probably what most people, even those who love me, want to hear. “Oh, good, so glad you went through all this and are happy with the result” is what I imagine they would say. To be honest, that’s what I would love to hear. But, those are not the words that came tumbling out of my mouth that night. Perhaps it was partially the wine, but I admitted that they’re not really fine, sharing that it truly sucks not being absolutely thrilled with my very pricey, reconstructed boobs. Especially after all this. I don’t mean to make mountains out of molehills (hee, hee), but….
Things like they’re heavy, too high/perky, don’t really move with me (or at all), don’t look or feel anywhere close to natural (to me). The way certain types of clothes fit now, especially v-necks as one side pulls to the side and “opens” more than the other. More importantly, they don’t feel like they’re a part of me yet (if they ever will). And…they’re almost completely and utterly numb.
Because of this new and unfamiliar numbness, I actually experienced a wardrobe malfunction earlier this week. I had read it was possible, but knew it wouldn’t happen to me because I would know. I would know because I would feel the strap fall, or the sudden breeze around my chest, etc. Except I didn’t when my (already revealing) dress’ strap slid down and my boob was, well, free-boobin’ it. I did not feel the cool air that was mindlessly caressing my chest that night and when I looked down to adjust the wrap around my shoulders, because my low cut dress was already pulling to one side and saw to my horror that I was exposing more of myself that I had planned on for the evening. (See already revealing dress note above.)
As you can imagine, I was incredibly glad I was wearing that wrap and I’m 99% sure that I caught it very soon after it happened, but still. Still. It felt mortifying, shocking and deeply unsettling. I was not unique. I actually wouldn’t know if my highly perky breast escaped out into the world for everyone to see. #freethenipple? No, thank you! Thankfully, if it had to happen, sitting in the dark 1920’s cabaret that was part of The Wild Party production was definitely the best place for it to happen. They said to expect some nudity in the over-21 show, but I didn’t think it’d be coming from me!
Despite my prior research, I believed any numbness would be localized around the nipple area. Yet, five months out from my exchange-to-implant surgery, I’ve realized that’s not the case at all. Turns out nearly all the nerve endings throughout were not only cut, they may not heal, ever. If I have an itch even on the top part of my breast, I can’t really scratch it away. I just feel a weird vibration sensation. And although they can still respond to temperature (um, yay?) and ahem, touch (yay!), I sadly can’t really feel either of those things. So celebrate those glorious nerves, ladies! You just might miss them if they’re gone.
Even knowing this, I still held out hope that I’d be perhaps luckier than others and my nerve endings would miss each other terribly and find their way back to each other for their long awaited reunion. And maybe I will be. I’ve heard some feeling, albeit faint, sometimes reveals itself to some lucky women over the years.
So not only do they not feel right, they don’t really look the part either.
Here’s the part where I should say what I do like about them. They’re very close to being the same size, their placement on my wide sternum is probably better than than it would have been with another surgeon, and I’m mostly comfortable with their overall size. My doctor did do an incredible job. Truly. She is very good at that aspect of her job (thankfully), but perhaps not as good with communication, especially imparting what to expect. Such as they’re going to look initially different than 6 months to a year out when they’re finally settled into their new home. That they will have a bit of a “ridge” at the top instead of a gentle downward slope which natural breasts have. That when I go to hug someone, my breasts will get to “hug” them first. And that for several weeks after surgery, they’re going to be swollen, sit super high on your chest, that they won’t yet feel natural, etc.
Because this seemingly small piece of advice wasn’t offered by my medical team, I spent that first week after surgery pretty much in tears anytime I looked in a mirror or looked down at my foreign chest. Sure, the meds likely had something to do with it, but at my first post-surgery follow-up my blood pressure was off the charts, I was convinced that I was so horrendously malformed. It feels obvious to me now that of course, they weren’t going to always look and feel like that, that I had just had surgery on them (duh), but not having that knowledge prior to the “final” implant surgery ended up being completely and utterly distressing to me. And could have been avoided. Again, information is your friend. Ladies, as your friend I want you to know if you or someone you love ever has to go through this.
I do want to be clear though, they overall look pretty damn good and the person in my world whose opinion matters most to me, is quite happy with them. Thankfully. But, of course, how I feel about them and how they feel to me, matters a lot in how I look at them and think of them, which translates into my excitement and self confidence about them.
An acquaintance on a breast cancer forum I belong to, who I’d have thought would know better, offered well meaning, but still upsetting, advice to avoid full-length mirrors and “treat myself” to some pretty new bras. Well, I have found myself avoiding full length mirrors when naked, but honestly I did that before the surgery and I bet I’m not the only one! And yes, the pretty new bras (that I don’t actually need now) that I had already treated myself to, do make them look more normal. But, I’m not walking around showing off said pretty new bras! I know, I know, beauty is on the inside and in the grand scheme of things, how they look and feel shouldn’t, and isn’t, of the utmost importance to me. Not being especially fond of them though affects how I feel, which affects my confidence, which affects, well, a lot.
I mentioned to my friends that I felt bad for not making this blog public since reading others’ very personal–but easily Googled–blogs, definitely helped me during pre- and post-recovery. Their response was comforting though, basically saying that while I may not be sharing my journey with a large audience publicly, that I’m still sharing. An audience who knows and loves me and has supported me throughout this journey and that is what’s important right now. I do believe that to be true. I feel good knowing that I’ve already been able to help others with my story. My hope is that in the future, perhaps when I’m a little further away from it all, I’ll feel the benefits of openness and honesty in sharing my story with a wider audience will outweigh any uncomfortableness, fear and shame I’m feeling right now. And I’m hopeful that, with time, even if they aren’t “perfect” (what is), that my breasts will eventually feel like they’re mine and not like I borrowed them from a Baywatch babe. Although, if her name is Tawny……
So, yea back to those stick on nipples. I can’t say for sure if I’d be happier had I sent my nipples packing, of course. If I had, at this point I’d be having to decide if I wanted additional surgeries to create nipples out of extra skin or if I wanted to go the areola tattoo route, where they are not 3-D, but airbrushed to look like they are. Neither option sounded as appealing as saving mine at the time. But now that I know I can get stick on nipples online?? I think I may have been. Lord, you really can buy *anything* from Amazon, can’t you!
Well, this has been your latest addition of Annie #keepingitreal here. Hope it hasn’t been too much. And, to leave you with some good news – I can finally, finally sleep on my side!! Granted it definitely doesn’t feel the same and isn’t as comfortable as it used to be, but just having the ability to do so now has definitely helped me finally have some much better nights.
Oh, and also, please remind me to avoid leaning over any open flames and wearing revealing, light-as-feather dresses in the future. Uncomfortably numb, indeed.
Post wardrobe malfunction in the living room during intermission at The Wild Party on Halloween and still smiling. How could I not be, getting to be with this dapper gentleman, by my side?
