Advance warning: If you don’t want to see gory medical stuff or pictures of my topless boobless body, you should probably stop reading. Also advance apologies for how long this is – lots of introspective ramblings here.

Today marks exactly one year since my double mastectomy. For those who are just tuning in, I was diagnosed with breast cancer in September of 2015. I spent last fall, almost exactly the length of my final post-bac term at PSU, on chemotherapy. On January 14, 2016, I had a double mastectomy to complete my treatment.

Post-mastectomy. The large bruise is because one of the blood vessels they reconnected didn’t stay closed and they had to put me back under to re-reconnect it. Other than that, the surgery went swimmingly.

Though finding a lump and being diagnosed with breast cancer was a surprise, in some ways I’ve had a long time to prepare. When I was in high school, I had Hodgkin’s lymphoma. It was found when I was fifteen – several months of poor health and inconclusive tests eventually uncovered a large mass on the side of my breastbone – and it was treated with chemotherapy and radiation. It showed up again in the middle of my senior year, and it was treated again. Though I have been healthy well past long enough to be considered “cured” of Hodgkins, the various treatments for cancer attack both good and bad, and over the years my body has been weakened, irradiated, and dosed with toxic chemicals. I can never give blood, or be an organ donor. I have known that a sharply increased risk of various types of cancers, most likely breast or lung cancer, are the price I paid for living beyond my teenage years. I get a variety of physical exams and blood tests every year, and started getting mammograms when I turned 30. Which is all a long way of saying that I’ve spent many idle moments – usually while showering or lying in bed at night – thinking about what I might do in the eventuality that any of those late side effects caught up to me.

My first mammogram, with markers to note my existing scars.

And always I have been certain that if I ever had breast cancer, I’d want a double mastectomy and I wouldn’t want reconstruction. Luckily (sort of?) my breast cancer was of the type that my care team recommended a double mastectomy from the start even though the cancer was only on one side. I’d have asked to have both breasts removed even if they hadn’t suggested it, or if they’d been leaning toward a less-invasive lumpectomy. Living with one breast seems much more awkward than living with none, and I’d rather get it all over with at once instead of living with the subconscious fear that cancer would show up on my other side. Insurance will cover reconstruction if I change my mind down the road (at least until the incoming government completely mangles all of our coverage), but I’m 99.9% certain I’ll never use that option.

I absolutely don’t judge anyone who decides on reconstruction, and I understand why so many people opt for it. I think many women just want to go back to looking and feeling as normal as possible – a return to normalcy is what helps them feel like they’ve beaten their disease. It also doesn’t help that the medical process assumes that you’ll want reconstruction. If I hadn’t already known that skipping it was an option, I’m not sure I would have ever figured that out. Reconstruction was assumed during my initial appointments, and I was automatically scheduled for a consult with a plastic surgeon along with my other specialist visits. The nurse who spoke to me during my first visit to the surgeon cheerfully described reconstruction as “a free boob job” – a description that I think is meant to make it seem less scary, but which to me just felt cheap and insulting. I wonder how many women get reconstructive surgery without realizing they can opt out? Nobody ever asked whether or not I wanted it – I was the one to speak up and say I wasn’t interested. And every time I did, whatever medical professional I was talking to seemed surprised by that decision, as though I just hadn’t thought about it enough and would obviously change my mind. The plastic surgeon – who, to his credit, was much nicer, more knowledgeable, and less sleazy than my judgmental brain expected – couldn’t let me go without a couple of passive “I just have to ask, why would a pretty young woman like you not want to get reconstruction?” moments. I assume all of the flattery based on physical appearances is meant to make us feel better? It’s supposed to be a show that even though our most feminine features are being taken away, we’re still beautiful and people will still value us? It all felt hollow and crass to me.

In my experience, plastic surgeons have the fanciest medical gowns in all the land.

Having a mastectomy, at least a fairly standard one like mine with sentinel nodes removed but no chest-wall involvement, is fairly straightforward. Cut out the offending tissue, let the incisions heal, do some physical therapy to get your range of motion back, and keep an eye out for lymphadema. The drains are annoying, I was sore for a while, and it took a couple months before I could move my arms properly, but on the whole I think the emotional toll – not the surgery itself – is the difficult part of a mastectomy. Adding reconstruction is what makes a mastectomy complicated. It adds a year or more to your recovery time. It introduces endless opportunities for infection. You wear an expandable set of implants for months, slowly pumping them up over time to stretch your chest open and create space for the final implants. Once it’s finally time for the real implants, they still have to be replaced every once in a while because they wear out. I have read/seen/talked to no one who made it through the process without complication and misery. It is painful. They will look and feel strange. You will still have scars. For some women, it’s worth it. But to carry around foreign bodies inside my chest just to look “normal” is, to me, the most abnormal thing I could possibly do. This is my body. This is what it has been through and this is what it looks like. We are all imperfect, impermanent, and incomplete, and that is ok and its own source of beauty.

What a boob looks like when it’s not attached to your body anymore.

I looked at a lot of photos and watched a lot of YouTube videos by other women who decided not to have reconstruction before I made my final decision. Of everything I watched/saw, two images above all others embodied the spirit of how I hoped to be and feel after surgery. These women don’t know it, but they have been huge inspirations to me. I hope to eventually be as comfortable with my body as they are with theirs.

I’ve never been able to find the original source of the image on the left, but the one on the right is from sagasays on Instagram.

On the whole, I’ve been very happy with my decision not to have reconstruction. It’s been difficult finding clothes that fit properly. I’m learning how much bust darts are not my friend (which is good because I hate sewing them!). Bathing suits have been particularly difficult. At the moment my solution is a bikini bottom and a matching sports bra, but I’ll figure out something better next summer. Being very short-waisted and wide-ribbed means that my square Glenn Danzig-esque build is much more obvious now. These issues were supposed to kickstart me into improving my garment sewing skills and learning more about pattern drafting, but I haven’t really had time to sew thanks to grad school.  Some day!

There have been some tough spots, but they aren’t really related to my mastectomy. I gained over 20 pounds during my treatment and recovery, and I haven’t managed to get rid of it yet. Ideally I’d like to just go topless when swimming, but for now I’m still self-conscious, more about my weight than my flat chest (though weirding out other people is part of it too). I’m also incredibly impatient while waiting for my hair to grow back. It turns out that long hair was much more a part of my personal identity than boobs ever were. I know my weight is fine, and my hair looks fine, but that isn’t the point. I’m tired of looking in the mirror and seeing someone who doesn’t look like me staring back.

Left: current hair. Right: ideal hair.

On the whole though, this year has been one of my best years. All my follow-up medical tests have been good and my chance of recurrence is very small. My first term of grad school was stressful and tiring but also unbelievably rewarding. I have found time to travel, with more adventures on the horizon. I’m glad to be back in my house, with projects to tinker over and my own introverted fortress of solitude to call home. I feel happy and hopeful and excited about what the future has in store. I’m also forever grateful to a good friend who convinced me to let her set me up on a blind date, for the relationship that followed, and for a boyfriend who was endlessly understanding, kind, and supportive while I tried (and am still trying) to come to terms with my strange new body. He stood patiently in clothing store dressing rooms helping me search for things that fit properly. He held me and made me feel better when I broke down in a heap, crying over the fact that my reproductive system has taken enough damage that I will likely never be able to have children. He laughed with me and cooked with me and looked at the stars with me and it was exactly what my stubborn i’m-a-strong-independent-woman-who-can-handle-everything-on-my-own brain didn’t realize it needed in order to properly heal. For my physical recovery, I thank a skilled surgeon and a great physical therapist. For healthy emotional recovery, for confidence that the men of the world (at least the good ones) will not run from my scars in horror, and for many other non-boob-related things, I thank Thaddaeus. As my friend Danielle sings, “the universe is big and wide, and when you least expect it she provides”.

My boobless year, documented in way too many selfies.