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 I was digging through my unpublished drafts and found this from February: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.

Loving a Body that Feels Broken

TW: disordered eating

What do you do with a body four months post-mastectomy? An entire third of a goddamn year, but in many ways I feel like I just got home from the hospital. Initially I did not feel the shame and repulsion I feared— instead, I was proud of what my body had gone through and the work we put in to get here. I don’t really understand where here is, though. I’m learning that work has to be ongoing, or I will fall right back into old, destructive thought patterns. Sadly, like many women I have always had an extremely difficult relationship with my body. It never quite looked like I thought it was supposed to, and we fought— sometimes brutally— to make it conform to a shape it doesn’t want to and likely cannot be. I have always struggled with understanding where my body exists in space, with what I look like, and having a double mastectomy and reconstruction is not a great way to fix this problem.

I can finally lay back on the bench at the gym without crying, cardio and I are getting reacquainted, and my breast surgeon complimented me on how well I am sitting up from laying down. I’m tiptoeing in to yoga once a week, continuously humbled by what my body can and cannot do. Poses that used to bring relief are currently quite painful, and I have to fight to put aside the ego that is enraged by lack of access. My body tries to make amends with me by developing cool party tricks, like the one where I can’t feel if I’ve spilled water on myself or the one where I can touch the inside of my right breast but feel it on the outside (my breast surgeon suggested workshopping something involving cigarettes, we’re working on it).

Much to my frustration, the last month or so has been marked by creeping feelings of self-hatred, often rooted in post-surgical weight gain. That shouldn’t matter, right? I went through eleven hours of surgery to remove and rebuild my breasts, I don’t have a thyroid, of course my body is going to cling to whatever it can. Aaron tossed our scale a couple of years ago, and that went a long way towards freeing up space in my brain for me to love my body for what it does and not for the number associated with it. I quit obsessing over keto, paleo, whatever style of eating I thought might solve the problem of my relationship with myself. The amount of space I take up shouldn’t matter, I want to be celebrating myself for what I’ve come through and how I’ve come through it.

And yet here I am, feeling somewhat bombarded by images of superfit previvors on instagram, training for their surgeries and seemingly immediately returning to form weeks after their mastectomies. Of course I want to celebrate the amazing accomplishments of these women— running a marathon post-mastectomy, what a thing!— but I sometimes feel like just being able to stand up straight after surgery should be just as celebrated. The pressure for women’s bodies to look new, different, better even after incredible trauma is immense, and it is a struggle for me to reject it. If I am currently incapable of loving my body, I long to at least be indifferent and the reemergence of disordered thought patterns sends me spinning. Instead, I feel the old siren call of restriction. If I just put myself on an extreme diet long enough to drop a few pounds, my self esteem will definitely come right back! Leading up to surgery I had recurring thoughts of how I needed to skip meals in the hospital so I wouldn’t gain weight. I cannot explain to you how fucked up and dangerous this is; one of the most important things you do after a surgery like DIEP is make sure you eat a high protein diet so your body can heal. Healing means nourishment, and nourishment means eating. Yet in the back of my mind almost every time I ate something (particularly if it was something that tasted good) was the thought that I was making myself too big.

This is garbage, and yet it still feels so alluring. I have a deep-seated urge to punish my body for betraying me, but the body keeps the score and will punish me right back. How do you integrate a body that is new, that still has another surgery to go before we can really start to figure out what things are going to look like? I’m supposed to have an answer in a post like this, right? Suggesting gentle self-care like a bath bomb or journaling or lighting a fucking candle. I must’ve spent hundreds of dollars on variations of vanilla-scented candles, but my sadness persists. I’m drinking more water, but there is a hunger and a shame in me that will not be satiated. My right arm (the side where they did an axillary lymph node biopsy) feels consistently more swollen than the left, but its visible only to me. Its so, so easy to start to obsess; I wrap my fingers around my wrist, checking to see if they finally touch again. I get measured for a bra and see my band size has gone up and start to panic. I punish myself by trying to put on a wedding ring I know will not fit. I feel a near-constant urge to ask my husband if I look different, code for I don’t feel right and don’t know what to do with myself.

There is no right answer, I suppose. My only option is to keep pushing forward, acknowledging the bad feelings but refusing to let them pull me fully below the surface. My value is not rooted in numbers—its rooted in how I treat others, it is inherent in my being. And yet, I struggle. On days like today I have to make peace with just being here, acknowledge the discomfort and rage I feel in and toward my body, and wait for it to pass.

Make mine a double? Notes on surgery

Does anyone remember Scribble Theatre on Sesame Street? Every time I try to explain to people how I’m feeling eight weeks out from surgery, all I can manage is “everything feels like a scribble.” Everything is this interconnected mishmash of emotions; I’m angry, I’m grateful, I’m terrified, I’m sometimes totally lost. I did not want to talk to many people after my diagnosis, and I felt like I had become some kind of dark Jesus— everyone wants to touch the hem of your sickly garments, give you sad looks, and speak to you in whispers. A lot of this feeling is obviously rooted in anger, and one of my continuing challenges has been figuring out how to allow people to love me. It is difficult to articulate the complex feelings that follow something like this— the flow of information is one of the only things you can control, and once it gets out it is hard not to feel like you are being used as tragedy porn. It is also, frankly, discomfiting to think someone’s friend’s uncle may be out there thinking about your mastectomy. I found myself wanting to tell everyone and no one; let’s all talk about my boobs, but don’t you dare look at them! I know I am putting out the “come here, go away!” message and it is an unfair thing to put on people, but when else can you get away with being unfair? Cancer is ugly, people are complex, and I am not someone who struggles in a graceful, instagram-friendly way. In my darker moments I feel like Persephone— this experience has snatched me, and I am in the middle of trying to figure out my way back out.

In the time since I last posted (apparently nearly 12 weeks ago, which feels like a lie), we made the decision to move forward with a bilateral mastectomy and DIEP flap reconstruction. I am a rip the bandaid off-type person, so I knew I wanted to get the surgery done as quickly as possible. You have to coordinate with a million people when you schedule surgery, so it can be similar to consulting a magic 8 ball— are the breast surgeon, plastic surgeon, anesthesiologist, and OR all available on the same day? Results unclear, ask again later. I was extra nervous trying to get everything scheduled, since my breast surgeon was very, VERY pregnant (as in, she had her baby a week after surgery) and I didn’t want to do the surgery with someone else. Luckily, we got July 22nd as a surgery date and I had a team of women I felt comfortable with— and, in my stronger moments, empowered by. I am continually grateful that I have been surrounded by my medical dream team, from the hospital to home. You’re going to see these people a lot, so be discerning with who you allow to take care of your body and don’t be afraid to go somewhere else.

Everyone’s experience is different, but I found it extremely challenging to function in the space between diagnosis and surgery. I would show up to the office but be completely unable to concentrate; cancer has an uncanny ability to transform itself into the most searing intrusive thoughts, and it is very difficult to answer constituent phone calls when you’re also imagining your own death. I’m not sure how high the pull bar in your bathroom should be, sir, but while I have you on the phone what do you know about post-surgical infections and wound care? I was very, very lucky to have an understanding office and enough sick time to work half days. For anyone about to go down a similar path, remember that taking care of yourself before surgery is just as important as after— you will want to go in to this process feeling as empowered, strong, and centered as possible to better situate you for an easier recovery. For awhile, I couldn’t muster the energy to figure out what that meant for me. I spent a lot of time shuffling around and sadly rattling my cancer chains like a ghostly victorian widow, usually complimented by a lot of long, sad baths where I’d bring in a book and then stare blankly at it (Dune is great for this). Cancer’s boyfriend is situational depression, and he will come in and try to sap the joy from the edges of your existence— sometimes you have to sit in that sadness, but sometimes you have to push through and do the things that made you happy until you start to feel again. My turning point in moving forward was getting my nails done; Meghann has always come through with pre-surgery masterpieces, and this time was no exception. Bon Voyage, Boobs was our theme, and the four hours we spent envisioning my boobs’ early retirement life recharged me in a way I didn’t think was possible.

Our post-surgery (Re)Birth of Venus nails were also crucial in a way that’s hard to describe— even though I’m not the one doing the work, the time spent creating these sets are like little battles where I get to beat the shit out of cancer, chronic illness, and trauma by turning it into something that makes me laugh instead of something constantly trying to bring me shame.

In probably the biggest instance of profligate spending (but with the least amount of regret!) in my life, we booked and planned a trip to Iceland in the span of five days. We were already intending on taking a trip to Bosnia, and I knew I needed to have a good-bye boobs world tour (Aaron took to calling it AreolaBorealis, which is even better). I am convinced those ten days were crucial to both me and Aaron being able to get through recovery— we had ten days together, away from doctors, pre-op appointments, and the claustrophobic walls of my own anxiety. I was able to steal hours at a time where I did not think about cancer, and driving through a place with so much elbow room gave my heart some space to breathe. Iceland feels like a suit of armor I put on before surgery, and the time spent there probably deserves its own post. If you can make it happen, bookend your treatment experience with time away. We will be spending the night in San Antonio the weekend before we return to work, and I think putting mental gaps between work, surgery, and return to work is invaluable. Taking a trip had the added bonus of giving me a bunch of pictures I could wildly demand doctors and nurses look at, which can serve as a nice distraction from the noise of the hospital.

As so often happens when I try to tell this story, I realize I’ve gone on and on without talking about the specifics of my experience. Pre-op and the five days in the PCU (where they check on you and your boobs every hour!) are indelibly drawn into my memory, but I experience it in pictures and still struggle to spit it out in words more artful than “my incision goes from hip to hip!” and “my husband had to wipe my ass!” I have had breast surgery before, so I was kind of prepared for what recovery was going to be like, but no one told me how important it was going to be to put away any and all pretense and get comfortable with basically everyone being in your business. I read a lot about having “t-rex arms” and having drains and the importance of having a recliner (probably the most important piece of advice I came across!), but it really wasn’t enough. Breast cancer is hard, surgery can feel damn near insurmountable, and maybe I need a little more time before my brain is ready to dive into the nitty gritty.