Cancer’s Doomy Boobsy

I see saggy breasts, imperfect breasts, and I want them. Saggy, squishy, droopy, uneven, unfirm, downward-pointing, or tiny ones lost in a t-shirt, vulgar ones bursting out of a plunging neckline — Yes please. All types of breasts make me jealous. All these generally considered negative descriptions of breast are complete bullshit. Having breasts is amazing. Having nipples is a luxury.

Being diagnosed with cancer has meant I first lost weight, then lost my breasts, had “breasts” reconstructed and finally gained 15 pounds. To say I have a new body would be an understatement.

“The silver lining of breast cancer is you’ll end up with amazing breasts.” Of course, these well-intentioned comments are people just trying to be positive and offer support. People who don’t know what the f*#@ they’re talking about. Like I’m supposed to be happy with this apparent breast cancer booby prize. Perhaps these people would like to trade their non-cancer breasts with my post-cancer breasts? I want to shout back, “What kind of amazing breasts don’t have nipples? What kind of breasts have scars from one side to the other?! What kind of breasts make it hard to sleep more than a couple hours??” But of course I don’t.

Most people seem to be clueless about what breast cancer can do to breasts. And what “reconstruction” even means.

Of course not all women with breast cancer require a double mastectomy. But my cancer did. To put it bluntly, for me it has left me with “Frankenbreasts” that feel and move strangely, look odd at best, itch, have no nipples, and enormous scars. It means never wearing a underwire bra again or feeling beautiful naked. It means none of my clothing fit. It means they ache all they time and make it difficult to sleep more than three hours straight. And this is after the year of painful treatment to rid my body of the cancer. This is what I’m left with. No it’s not like having a baby. No it’s not like back pain or having a tooth pulled.

When I woke up from my double mastectomy surgery, I had tissue expanders in my chest which are super firm to gradually stretch the muscles and skin. They feel exactly how you would think a partially inflated balloon-like object would feel in your chest where your breast used to be. During the surgery, the surgeon inflated them with a small amount of liquid so my body could get used to having a foreign object under the pectoralis muscles.

I needed to start radiation treatment within 6–8 weeks of my surgery, so it was a tight timeline to get these puppies fully expanded. The first two weeks post-op were the two most painful weeks of my life. And the third week I had my first “expansion”. The nurse locates a metal port through the skin with a magnet and marks it with a marker. Then inserts a needle into the marked port, and adds more fluid slowly to the expansion implants. It felt so tight I thought my chest was going to explode and shoot this weird science experiment across the room and all over the walls. I struggled to put my clothes on then waddled out of the office feeling like my upper torso was tightly wrapped in duct tape.

Over the next few weeks I needed to get the expanders inflated closer to 500ccs. So once a week I was “expanded.” Each time the pectoralis muscle contracted firmly, upper back muscles spasm, shoulders pulled forward, upper back rounded, arms could hardly move.

For almost a year I lived with what felt like a coconut bra under my skin.

Throughout this cancer trip I’ve felt it was important to be open to others. So many women go through breast cancer that we all need to have some sense of what it means.

People know that I’ve had a double mastectomy. I catch their eyes dropping quickly to glance at my chest. I feel like a freak show so it’s easy to understand why people want to stare. I totally get it and I too think it’s a curious thing.

Here’s the best analogy I can come up with to explain my feeling of total body dysmorphia.

Picture yourself in the house you grew up in. You know it well. You feel good there. You like the place. You feel warm and at ease being home. The golden light through the windows, the smells, the feeling of comfort when you go to sleep at night.

Now, imagine walking into a total strangers house. The strangers old beat up slippers by the door. A smell you don’t recognize. Pictures of someone else’s family on the walls. Everything broken and beat up. Kitchen falling apart and covered in cooking grease. The rooms are too small, the ceilings too low. Torn wallpaper with odd patterns and oppressive colors. You crawl into the strangers dirty sheets and try to sleep on a bed that’s not the right firmness.

This stranger’s house is breast reconstruction.

Reconstruction is a funny word when you’ve been through the cancer “journey” I have. It’s accurate in the sense that I’m in a state of being rebuilt or remodeled after being completely destroyed. But the word reconstruction irks me too. It seems to be a word that makes everyone feel comfortable about an extremely painful and bizarre process that women go through after a breast cancer diagnosis.

I totally understand that some women want privacy and to feel normal after breast cancer reconstruction. But I can’t bear to call my newly reconstructed rack “breasts.” Apart from their location on my body, they are nothing I have ever associated with breasts. By calling them “breasts” it feels like I’m pretending my breasts weren’t removed from my body and slices of them aren’t in a laboratory somewhere as tissue samples for research.

The exterior transformation may be over but the interior transformation is just beginning. I’m not done grieving the loss of my old body. And it’s a long road to become acquainted with this new body of mine, to appreciate it, and to understand its new limitations and capabilities.

I asked my good friend and UCLA Professor of Linguistics Jessica Rett what she would suggest calling my reconstructed “breasts”. Her response:

Remammaries.

I like that.

This was originally published in the zine “Boobs” by Pussy Power House, a community of women that promote self love and body positivity.