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.

Reflections on a Thyroid

Surgery is weird and terrible. I wrote some of this the night before my latest surgery-- a total thyroidectomy, the yukon gold of surgeries if we're ranking them by root vegetables-- and have been sitting on it for the past two weeks. Surgery went well, but we wound up spending an extra day in the hospital and I haven't been able to find the energy to think about it, let alone write about it. My brain is still very foggy, and I feel like I'm struggling to find the words to capture my experience. I suspect I will break this up over multiple entries, lest we wind up with a long-winded rant about the horrors of hospital bureaucracy and the apparently inability of some nurses to draw blood. 

I was well-armed by great friends and family both before and after surgery-- I mean, I got a Spirograph, books, a positivity journal, delicious whiskey, and a lot of flowers! Afterwards, we got more food than we could handle (I think Aaron just finished the last bit of food last night). My mom also got me a Dammit Doll, which became an important source of comfort for me in the hospital when the nurses apparently all forgot how to do a blood draw in less than 30 minutes. I freeze up when people give me things, so I will just say here that every card, Spirograh, text, etc.. served to help me feel loved, supported, and much less alone. 

I also went in with some boss-ass nails courtesy of Nails Y'all. Look at those thyroids suffer! 

I also went in with some boss-ass nails courtesy of Nails Y'all. Look at those thyroids suffer! 

Surgery is weird because it is isolating. It is, by its nature, a solo experience that you're not even really a part of. It leaves you feeling like you're floating through the days and hours leading up to the procedure-- you go to work, you move through your day, but all the while you're getting flashes of your last surgery or wondering what it will be like when the surgeon intubates or makes the first incision. You know you can't eat or drink after midnight, you have to get there two hours early, and you will sit in the lobby with a bunch of other soon-to-be patients all pretending not to be nervous. Depending on the time of your surgery, you may get the pleasure of going all day without eating or drinking; the time for this particular surgery has changed four times-- noon, 12:30, 1:00pm, and then finally moved up to 10am. At some point you will be led back to your little surgical pod, asked to remove all of your clothes (and jewelry-- I am always surprised by how emotionally difficult I find it to remove my wedding ring), and change into your insane purple inflatable hospital gown. 

This woman is having a much better time than I did. Cruelly, I did not get purple socks. 

This woman is having a much better time than I did. Cruelly, I did not get purple socks. 

This surgery has been particularly difficult for me. It is the first time we've opted for a surgery that is truly preventive-- while my thyroid was doing a shit job at being a thyroid, both the nodules and my thyroid hormone level had been fairly stable. At the same time, we did confirm that I have Hashimoto's, so the damn thing was living on borrowed time anyway. Still, I struggle with feelings that I brought this on myself, and that I have no right to feel tired and sad because I made the choice to have the surgery. This thought cycle is not conducive to healing, but seems to come hand-in-hand with Cowden for me-- again, its that liminal space of "cancer but not", where I don't want to dishonor the experience of people with cancer but I feel like I'm living with it whispering insults into my ear. I am working to redefine my understanding of what it means to be strong and live with this disease. I spent years telling myself being strong means existing in a state of non-feeling (a trait I inherited, along with the Cowden, from the German side of the family!), but I am now embracing the idea that it takes far more strength to hold space for yourself and your feelings. I am working to approach myself with tenderness. 

31 Likes, 6 Comments - Lindsey (@ifyouliveforever) on Instagram: "It's a little off center but I'm done! I've been working on this for six months (!!!) and in that..."

Surgery lays you bare in all possible ways-- you are forced to hand yourself over completely to the surgeon, then the nurses, and then (blessedly) your family. Sometimes the gravity of that handing-over is missed by doctors and nurses, and when that happens it makes the entire experience much more difficult. For me, being in a hospital lights up all the emotional pathways related to my dad's death. For those who don't know, we spent four hideous and beautiful days with him at UTSW (sleeping on the floor in the bone marrow transplant ward waiting room) before he died. The bright lights and linoleum of the hospital immediately put me back there, and being admitted was even more difficult than I anticipated. Poor Aaron (his support throughout this deserves and will yield its own post) explained this to my nurses, but it did not really take. Combine this with the fact I have difficulties with getting my blood drawn, and you have a recipe for some emotional difficulties. I am sanguine (heh) about blood draws-- I am not afraid of blood, I know that they will be over quickly, and they almost always go better than anticipated. It was not in the cards for me this time. I'm not sure what happened-- maybe the nurse picked up on my anxiety, which made her anxious, which in turn made me more anxious-- but it took her half an hour and several assistants to get enough blood, and I had my first full-blown panic attack in years (to be followed by my second one eight hours later). I generally really love nurses, but this one did not have the emotional bandwidth to offer me the empathy I needed and I was left crying, telling her I felt like she was treating me like I was in trouble, while she stood there, stone-faced. 

In the hospital there is nothing to do but mark time; it has a faltering rhythm-- techs check your vitals and empty your drain every two hours, nurses pass scheduled meds every four to six hours and take your blood, doctors wander in either too little or too often, and your machines keep beeping. You catch sleep where you can, but it can hardly be called sleep; I feel like I was asleep and awake the entire time, watching everything from underneath glass but feeling everything. Recovery got a little easier once I got home and the fog is still continuing to lift (word retrieval has been a bit of an unexpected, irritating challenge)-- now that I'm feeling more like a human, the challenge is to remain tender and remember that my body is still healing.