Happy Birthday to my Boobs

Here we are, suddenly a year later. I was unsure how to approach this.. it feels like its been five minutes and also thirty years- my new body and I have spent a year together, and I’m still not really sure that I know her. I am not the same person I was a year ago.. I think I left that woman somewhere in the Westfjords of Iceland and have been trying to figure out who this new chick is ever since. I was digging through my unpublished drafts and found this from February:

How do you do recovery? I don’t understand it and as I get further away from surgery I feel increasingly more muddled. Something switched over in my brain last month, and suddenly I cannot shake this feeling of intense shame and sadness around my body. I feel embarrassed for Aaron to look at me— it is difficult not to give in to the thoughts telling me I have been mutilated, that I am an object of sorrow and derision. I continue to struggle to find a place in the breast cancer community— even the groups that rail against pink-washing feel pink as hell, and wellness is the watchword. I haven’t really enjoyed the second season of Shrill, but the episode where she goes to a “women’s empowerment conference” was so spot on I kept pausing it to tell Aaron just how right it was. It feels de rigueur for young breast cancer support groups to decry pink-washing while also carefully cultivating their instagram presence to feel like a meditation on millenial pink and the power of spin classes. Fear and anger are not allowed, unless laid out in a very tasteful caption detailing how you were once so scared but now you’ve found your “tribe” (let’s stop saying this). Darkness is only allowed as long as it was already driven out by light.

Its likely a lot of this anger is coming from a place of jealousy. Jealousy that I have not been able to find that connection; I feel almost pathologically incapable of finding someone similar to me— angry at her situation, hopeful to have moved past the worst of it, but also somehow utterly adrift. I don’t like the commodification of cancer, the co-mingling of wellness (read: diet) culture and young breast cancer survivorship.

Well, my thoughts have not really changed! So how do I process the one year anniversary of my double mastectomy and DIEP flap reconstruction in the middle of my country falling apart? Haltingly, and with a lot of angry crying. I had planned so many things (as we all had!) this year to mark my surgery anniversary and reclaim my body- most vividly, I remember sitting on this same couch booking a boudoir shoot with Cheyenne Gil. It will still happen, but the act of booking it right before surgery felt so much like taking my power back- yes my body will change (I fight the feeling of it being disfigured), but here was someone who shoots all bodies from such a place of beauty, joy, and admiration. So for now I mourn this small loss, and try to hold tight.

I am someone who does not tolerate handling emotions directly for very long- I picture anxiety, fear, sadness, rage all as supercharged spheres I keep packed away in little boxes. I prefer to find a call to action or a task I can achieve to…I guess sublimate my distress. This works sometimes, but eventually you will have to unpack those damned spheres before they explode. So here we go, I guess?

I feel like there is a typical flow these posts are supposed to follow- I’m sad, but here are some real great gifts I’ve gotten from cancer, a little more sadness, and then an inspirational quote in barely legible calligraphy, culminating in a triumphant picture of me standing topless on a beach or in the mountains. Breast cancer gave me 300 new breast friends, etc etc..

I sound sour, likely because I am a little sour. In practical terms, it seems there just are not a lot of women who have had my surgery. DIEP flap is a uniquely difficult experience, and it would be nice to commiserate with others on the high strangeness of living in an armchair for three weeks. I’ve struggled to find a place in the breast cancer community where I feel welcome and comfortable. In my experience, these groups either skew much older (like, much, much older) or feel very sorority-esque. Both of these things are absolutely fine, but they just don’t work for me. I have never been one for constant positivity, I am opinionated, and maybe I am bad at being told what to do. I have struggled to try and shear off parts of myself to fit within the confines of a group, and I always walk away feeling horrible. Honestly, I am in the process of learning that something can be a bad fit for you and not be inherently bad- that binary thinking is a real mind-killer! So at least I have advanced from my thinking in February- just because something doesn’t work for me does not necessarily mean it is broken (however it can always be made better!) I don’t make friends easily, which has always freaked me out- I see so many women who seem to have no problem making a million instant hard-and-fast friendships, whereas I have a handful of extremely close, treasured friends. Again, neither way is wrong or better but I struggle to not judge myself for it.

So perhaps its time to make peace with the fact I cannot be anyone but myself. Who am I, a year out from having both breasts removed and my body rebuilt? I certainly have less tolerance for bullshit (not that I had a lot before), less patience for pursuing a career that feels like banging my head against the wall. I feel more inclined to make the big choices- I am so keenly aware of the frailty of this life, of how hard-won my time here is. I still fight the overpowering desire to make everyone happy, the all-consuming, uniquely feminine need to be liked by everyone (again, I find myself thinking I am not fitting into these communities because I am inherently unlikeable, a “bitch”). My PTSD adds an extra layer of complexity to an already shitty situation- I know sometimes my mind does not react logically, and it can be hard to stop the spin once it starts. Last week I dreamt about surgery every night, which is not my idea of a good time.

The requisite gratefulness piece of this post: while I haven’t connected with a larger group, I have connected with a small coterie of women who seem to share my sensibilities. Every day I am grateful that the accursed internet brought me a connection with people as far away as Australia (and Chicago, but at least I could reasonably drive there). Community and connection are vital, even if its on a more intimate scale. Honestly, I also really fucking love my surgeon? I had my one year follow-up with her a couple of weeks ago and I was terrified it would be my last appointment (As an aside: one of the less spoken about and hardest parts of cancer is no longer seeing your doctors- there is a certain comfort in knowing they are there, and that they understand what you are going through. To lose them means going fully back to the world of the cancer muggle , which is exhausting). I was so relieved to hear I will continue to see her for follow-ups.

In the beforetimes, I would have had a vacation scheduled to mark this week. Aaron and I would go somewhere new, eat a lot of food, and celebrate the work we have done to survive. I would have Meghann make some killer nail art of my new boobs celebrating their first birthday. I would find the joy and the humor in what so often feels like a tragedy.

However, we are responsible and not monsters, so obviously we cannot do that now! Instead I’ve ordered a birthday cake for my boobs (recreating one of my favorite nail art sets ) boob cookies for my surgeons, and done a lot of paintings and sketches of boobs. Its mostly worked, because I find myself sitting here on Tuesday looking forward to tomorrow- and for now that’s going to be good enough.

A final thought, appended awkwardly. My entire experience with cancer has been defined by luck and privilege. I was lucky to find out I have the PTEN mutation, lucky to have relatively easy access to my necessary screenings (in spite of the best efforts of Blue Cross Blue Shield, sorry guys!), lucky to have my DCIS caught early in a mammogram (thats how its supposed to work!), and extremely privileged to have access to two of the best surgeons I have ever met (and I’ve honestly met way more than my fair share). Hell, I am beyond privileged to have been able to afford to pay my medical bills without it completely breaking us.

Dr. Potter and Dr. Sprunt have never once doubted anything I’ve said to them, they’ve advocated for my surgery experience to be as smooth as possible from start to finish (Dr. Sprunt had an order written for IV xanax the morning of my surgery before I could even open my mouth), and without Dr. Sprunt I would not have even known DIEP was a possibility. I did not have to fight for pain meds in the PCU- I got everything I needed, and when it seemed like something might go wrong Dr. Potter was there to bring it all back to order. Too often the outcomes and experiences of BIPOC women (particularly Black women) are not the same. Over the past two months I have seen movement towards making the breast cancer community a more inclusive place, and I hope we are all committed to making sure that extends to dismantling medical racism. Everyone deserves to have medical team like the one I have, so let’s make that happen.