Everything Must Go.

On the morning of my 50th birthday party, three weeks after being diagnosed with The Unfortunateness in my right boob, I made a cup of tea and sat down to look at photographs of women who’d had breast cancer surgery. These incredibly brave and helpful women (thank you thank you thank you), by agreeing to be photographed, got me to the other side of the surgical choice that was right for me.

I began to scroll through the pictures of real-life women photographed specifically to show what their lumpectomies and mastectomies really looked like, arranged in Before and After pairs featuring different types of reconstructions.

I had to stop several times and remind myself to breathe.

What an idiot I’d been for not canceling the party. I was suddenly not exactly in the mood to celebrate. And I was pretty sure I’d never be again.

The pictures triggered a deep uneasiness within me. I felt like I was invading these womens’ privacy. Offending their modesty. But they weren’t exposing themselves gratuitously. I wasn’t peeking through my fingers at something illicit or erotic. I was looking at the exact opposite of that. As I surfed the edge of a panic attack I muscled myself through a few more deep breaths.

Even with reconstruction, these women didn’t look “fine,” and that’s the only thing I wanted to be in that moment. But what would “fine” have looked like anyway? Not like that. Not mutilated, I thought, and then I collapsed in tears, ashamed for both having the thought and for feeling that way. Searchingly, I tried to find what I’d never actually see, what was already gone from the women in the pictures. What was missing.

Women’s bodies, especially semi-clothed and naked ones, are photographed mainly to arouse. Yet this was not porn. This was not the Victoria’s Secret catalog. These were not women modeling objectification. These women were the very truest portraits of bravery I had ever seen, and possibly the first real celebration of the female form as well.

But God, all those Befores. It brought home more than anything ever could what was happening to me. What breast cancer was taking away. These women, by agreeing to do this, had made a truly badass contribution to the sisterhood of women, both those affected by breast cancer and others. I am deeply grateful to them for many things, but mostly for the offer of the new gaze they presented to me: a woman’s chest is womanly because it’s hers. Whatever her breasts look like, whatever tissue is still there or not there, whatever symmetry that’s been interrupted, that’s her womanly figure. And barring any complications, she gets to decide what her own After should look like, whatever that turns out to be.

Still, at the time I was horrified. And ashamed to be so. I cried harder for what I saw was my cowardice. Some feminist I was, afraid to be flat-chested or lop-sided? If I’d been truly brave, I wouldn’t have cared. But I did.

I had only been widowed for a little over a year. What man would ever find me attractive again without breasts that looked normal? And what did that say about me, that my breasts, which let’s keep in mind were trying to kill me, were still even remotely important to me? Who cared what I looked like in the end, as long as I was alive and well?

Well I did apparently. What I didn’t know but would soon understand is that it was okay to choose reconstruction for a million reasons and still be a feminist. But what I would have to let go of and what would never return were more than my breasts. Looking at the pictures had forced me to see I’d been holding out on myself. I’d been considerably less than loving of my own body. And if I was going to go through surgery and recovery and treatment successfully it was time to take ownership of it and live in it, exactly as I wanted.

The only thing was, I wasn’t sure I knew how to do that.

I’d never really related to my breasts as anything other than objects of desire or milk dispensaries. And suddenly I’d landed on the shore of a whole new country where my breasts had only as much value as I was willing to assign them. It was completely new. If it had been stingy to only evaluate them in terms of how they existed for others, now in the context of having to decide between lumpectomy or mastectomy, I was suddenly confronted with a question. How attached was I to my own breasts?

The truth was, at a minimum I had not exactly enjoyed my boobs. I had the kind that were supposed to be the envy of all women — big. Pendulous. I had nursed easily and painlessly with both of my children and I’d had an amazing supply of milk. My kids were close in age and I’d actually nursed both of them for several months after my youngest was born. Nursing them is enduringly the source of some of my most incredible and joyous memories.

But outside of that I had not enjoyed at all the attention that boys and men had started paying me when I started to develop at twelve, which over the years has included every kind of disrespectful and objectifying commentary that I won’t bore you with because it is truly that — boring, unimaginative, base, hostile. And there had been assaults, from the non-verbal type of Eyes Up Here conversations boys and men had had with them, to the catcalls, to the actual grabs and pinches from both strangers and boys I’d thought were my friends.

During the time when I was newly developing, I was also molested by an uncle I’d adored as a small child.

The result of all of this was that I began to try and cover up my breasts and make them disappear. When resisting wearing a bra became impractical, because pretending something’s not there becomes futile pretty quickly in all manner of situations especially this one, I resorted to wearing flowy blouses and shirts over t-shirts in an effort to camouflage them.

Finding clothes that fit and comfortable bras that also did what they were supposed to would be a lifelong struggle. Exercising and playing sports would be a challenge because of how heavy they became. Even yoga was difficult because breathing in certain poses is at best optional when your own boobs are mashed up against your face, so you can guess how well that went.

Big boobs were in my opinion completely overrated.

Even with my husband, I was shy about them. I did not always understand that he loved them in a way that was multi-dimensional and visual without being objectifying. It took a long time for me to get that. He helped me at least begin to regard them with a smidgen of positivity, however distanced. I was able to get to “well they’re not great but they’ll do.” But I was never less than uneasy about being naked. I learned to appreciate the pleasure they brought him, and me, and enjoy the powerful way he touched me with so much kindness and reverence….but it was ultimately too scary for me to delve much deeper.

He’d loved my breasts completely for exactly what they were because they were part of me.

I thought a lot about this after I was diagnosed and he was gone. Now I was the only one who could love them the same way.

Being diagnosed with a tumor in my boob had suddenly added the equivalent of a second job to my life. There were tests, a lot of them, to schedule and undergo: An MRI, to detect any cancer outside of the tumor site, either in another part of my right breast where the tumor was discovered or in my left one that may have gone undetected by 3D mammography. A genetic test, to see if I was positive for the BRCA 1 or 2 gene mutations, which would have serious implications for my cancer risk going forward. And then, because MRI is so sensitive and usually picks up everything that’s anything, even if it’s not anything malignant, it was recommended after the initial MRI results came in that I have an MRI guided biopsy to investigate a spot that had flagged as unusual in my left boob. It was probably benign, but considering what I was facing in terms of surgical decisions and treatment, was recommended for testing.

There were also appointments with the three oncologists on my team: surgical, medical, radiation. Overseeing all of this was a breast oncology nurse who coordinated logistics, acted as a sounding board, and even made my appointments for a second opinion at the Dana Farber Cancer Institute.

There were phone calls and emails. A lot of them. As my results came in, I had seemingly endless questions. I was speaking an entirely new language filled with medical terminology I couldn’t pronounce correctly to describe treatment concepts I wasn’t grasping fast enough. Who does, really? Answer: other doctors, nurses and medical staff. And they were so incredibly patient and kind about that. I would have to ask every question I had two or three times before the answer got in my brain and stayed there. Especially during those first weeks in the Boob Lounge, when I went in and out of shock constantly, sometimes several times a day, sometimes right in the middle of listening to a doctor. I learned to politely interject, explain what was happening and ask could I have a moment. They got it.

Time and Space began to dance with each other and me in a way that left me short of breath all the time, either because the days were whizzing by so fast I was disoriented, or because a day had slowed to an agonizing crawl and I had to endure it, any illusion of a certain future shattered, leaving heavy and oppressive pieces of worry pressing on me. If this could happen, what else did I need to prepare for?

I had gone from detection to diagnosis in five days, mercifully fast, but it had used up what meager resources I had emotionally and physically and bounced me back into the kind of exhaustion that I had endured for months and months while my husband was dying. And now I had a very important decision to make. I hadn’t received a second opinion yet but it was scheduled. My surgeon had indicated I could have a lumpectomy but a plastic surgeon would need to be consulted first. In just three weeks, I’d gotten enough information to begin to navigate the first chapter of treatment — surgery.

So what was I going to do?

There had been a frustrating back and forth with the local oncology team about exactly how big the tumor was and what kind it was. The tumor was made up of two kinds of growth: DCIS, or ductal carcinoma in situ, which is basically like carcinoma stage zero. It’s tissue that grows itself but doesn’t invade other material, unlike the other part, IDC, invasive ductal carcinoma, which takes over. And moves, not aggressively, but first to your lymph nodes and from there to as much of you as it can until it kills you.

Three or four doctors weighed in. They couldn’t decide what the tumor was made up of proportionally. They talked about it so much I felt it must be important, but then I picked up a whiff of what felt like their clinical, intellectual fascination with the diagnostic challenge I presented to them, and while I appreciated that they all loved their work, I also felt like saying, Hey Docs I’m glad you’re finding this so captivating, but it’s not a breast floating out in space you’re all talking about, it’s attached to an actual person which happens to be me. And I’m having a hell of a time remembering to zip my fly and make dinner for my children in between worrying about dying and leaving them orphans. So maybe we could wrap this up.

As cognitively and emotionally impaired as I felt, I soon realized that my previous experience as my husband’s caregiver would be a great asset. I had done this before. I knew how to do it. I’d been an advocate for him. I could be one for myself too.

So while there were still some unknowns in the exact course of treatment, that couldn’t be answered until after the final biopsy of the tumor, there were some things I did know for sure at that point: my left breast had been declared clear of malignancy after the MRI-guided biopsy. The tumor was the most common form of breast cancer and the least aggressive. I was not carrying any genetic mutations that would cause future concern. My lymph nodes appeared clear.

And I had “busy,” “tricky” breasts, evidently. Meaning my breast tissue was very dense. Which is how the tumor had gotten so big and had remained undetected for so long. It had been disguised because it mimicked my own healthy tissue, hiding out in there whistling nothing to see here, growing bigger every year. I’d had a decade of mammography, including several 3D mammograms, and they had been looking right at it and never had a clue.

So. Looking through the photos of the women warriors on breastcancer.org I asked myself, what do you want? The answer welled up from deep within.

You mean besides a magic wand that will transport me back to the morning of October 4, in which I wake up with a shudder and say, ‘I had the most horrible nightmare?’ I mean, is the It Was Only A Dream option available?

What I truly wanted when this was all over was to be alive and well. And I wanted breasts. Breasts I could do business with, that is to say, I would agree to love them with my whole heart, and commit to spreading that love to every single cell of my entire body effective immediately. But in return I wanted smaller, easier breasts if possible, composition to be determined.

I knew more and more women were choosing to forgo reconstruction altogether. I’d read a fantastic article in the New York Times about a growing contingent of women who were opting for no reconstruction at all after bilateral mastectomies, and I learned more from the comment section about the risks and realities of different types of reconstruction than from any other source to date. I liked what I saw in the eyes of the women featured in (and also photographed) for that article. And my dear friend Judy had “gone flat” for four years while she made up her mind about what kind of reconstruction she’d like to do after having both of her breasts removed prophylactically due to her family’s history. About the time I was on one coast trying to make my decision, she was on the other, just a few weeks away from her first DIEP flap reconstructive surgery. Her surgeon would take tissue and blood vessels from her own belly and make breasts for her. It was incredibly complicated microsurgery, lasting longer than mastectomy surgery by almost double, with a more strenuous recovery period as well. And then there would be revision surgeries after, if the flaps didn’t fail.

There was something about the way Judy had navigated her options, all inspired by heartbreak, that made me sit up and listen differently. She’d lost her grandmother, mother, and a sister to breast cancer. Her surviving sister was a breast cancer survivor. One day she looked at her beautiful daughters and said, “Nope”. There would be no missing out on their growing up. She gave up her breasts for a life with them, and then when complications made reconstruction impossible for a while, she proudly (and quite gorgeously I might add) went on with her life. And life without breasts was just…life. It wasn’t any better or worse than life with them, except if you consider she had majorly increased her odds of being able to live it. Then came a time when there were more choices to make, and she made them. And life with breasts would be life too. A real life, and she would be alive to live it.

Quite simply, what all of the progress in the development of breast cancer surgery and reconstructions has done is this: it’s given women the freedom to decide for themselves if their attachment to their breasts is something restorative for them. Or not. According to my doctors, mastectomy surgery used to be so invasive and ineffective and left women so deformed, with heavy and uncomfortable prosthetics their only options, it’s no wonder my mind went immediately to mutilation to describe how I felt facing it.

The room to consider many options was a sacred way of returning to myself. Once I got back to my own heart, my intuition could roam free and strong again. And once that was back online the rest was easy: Busy, tricky breast tissue meant that even if I opted for a lumpectomy or mastectomy on the right breast, with or without reconstruction, I would have to deal with annual or more frequent mammograms and even MRI’s on the left. And I was all done with that. When this was all over I wanted to be as free as I could and I planned to ride off into my and my family’s personal sunset, encouraging cancer to basically eat my dust.

So I would have a complete mastectomy on my right side, which also made sense if it meant I could increase my chances of forgoing radiation. And because I did not particularly feel like a lifetime of imaging and monitoring of my left breast sounded like anything appealing given what I had just been through (see above), I drew upon my mother’s experience of having had only one breast removed. She herself wished she’d had both removed just for that fact alone. And so the left breast would go too.

Eventually, up from deep in my bones would come an understanding that I wasn’t dealing in vanity with my desire for reconstruction. It’s not vanity to agree to love ourselves unconditionally. It’s not vanity to want to be comfortable in our own skin and to choose the figure that reflects that. I had spent an entire lifetime working on accepting myself exactly as I was, and the tumor revealed an opportunity to go further with that lesson. I would never have chosen to surgically alter my breasts before my diagnosis, but now that I was in the position to make some decisions it felt right on a gut level to put some boobs back on the rack, so to speak. Only this time, I would be in charge. Liberté, Égalité, Symétrie!

One night a few weeks later, after I’d gotten a second opinion and my surgery date was on the calendar, I woke up at 2 am and could not go back to sleep. At my second opinion appointment, the team at Dana Farber had inspired me with such confidence in moving forward with my treatment there, that it made me sound like a marketing brochure when I tried to describe it. It was the most expert, clear and comprehensive experience I’d had since my diagnosis, while at the same time validating that I had received excellent care up to that point. Because my local team had done such a thorough job with all the diagnostics, we could move forward right after the consultation. I was somewhat spoiled for choice actually, because if chemo or radiation were to be indicated later I could do those at my local hospital, the protocols being the same. But my decision to be treated at Farber was one of the easiest ones I’d have to make.

By the time I arrived there I was certain about having a bilateral mastectomy, and no one tried to dissuade me from it. My medical oncologist did want me to understand that it was not medically necessary to remove both breasts to decrease any chance of recurrence. He explained to me that the cancer in my right breast couldn’t come back to my left. If cancer returned in the left, it would be considered a new occurrence. He cited a trend against breast conservation in the spirit of, “I don’t care, just take it all,” which was less than informed and fear-based. But when by way of an illustration he told me, “Listen, if you get a flat tire on one side of your car you don’t replace the corresponding one on the other side,” I burst out laughing and told him, “Dr. Burstein you can never say that again! You have to come up with a better metaphor immediately!” His Harvard Medical School fellow, standing up against the door of the exam room, looked like he was biting his tongue to keep from laughing with me. If my doctor wasn’t used to being challenged like that, he took it in stride and shrugged. Only someone who did not live with breasts daily would say that. But he’d probably just gotten the biggest laugh from the toughest crowd he’d ever worked. And I did not take anything away from that interaction except his sincere desire to make sure I had all the information I’d need. He got my point and I got his.

There was nothing left to do now except consult with my plastic surgeon (who would scrub in with my oncology surgeon) and wait. And try to relax.

I was used to waking up in the middle of the night. Some nights I would fall back to sleep after a couple of hours of tossing, other nights the only thing that would put an end to it was the alarm signaling it was time to haul myself out of bed and start the morning. But on this particular night it seemed I had awoken to a visitor at the end of my bed, a personification of every worry I’d ever had transmogrified into a supervillain version of myself. One who was well prepared for a long night of tortuous obsession. It was She Who Wanted to Get to the Bottom of This Shit.

I’d met her before. She’d been a regular at these slumber parties of doom and gloom. But clearly she had been exposed to some kind of gamma radiation or perhaps the MRI’s had activated her superpowers. I’d never seen her like this before. It was as if now that decisions had been made, she was done being the patient, in fact she was done being patient full stop, and she was coming for answers.

She demanded to know exactly how this had happened. And why. She shoved a clipboard full of lists at me, long ones, detailing all the risks I had ever taken or been exposed to mentally, emotionally, spiritually, physically. Metaphysically. She had chalkboards filled with graphs and exhorted me to get out a pen and paper so I could participate. What had I eaten? What chemicals did I unknowingly expose myself to? What about the effects of trauma? Grief? Secondhand smoke? Growing up in L.A. in the 70’s and 80’s without using sunscreen? Was my current water supply safe? What about my soul and the agreements I’d made in that contract? What had I, knowingly or unknowingly on any level of consciousness, done or participated in that had caused a bunch of cells in my right boob to go rogue?

I got the sense that “It’s just one of those things” was not going to be an acceptable response.

She had miscalculated one thing, however. I was so exhausted I just couldn’t do this. Not again. I’d had endless nights like this when my husband was sick. I literally had no fight left, which concerned me when well-meaning friends reassured me that I “would beat” this diagnosis and I “would fight it and win.” I knew I was done fighting. Even if I had believed it was the right approach, which I didn’t, if that was what was required I was dead.

And I certainly had no energy left for Midnight Susie, Supreme Wielder of Obsessive Fire, either. I almost reached for a pen but then stopped. I looked straight at her, and said, “Listen. I love that you want to figure this out. It shows that you care. And I would love to understand it too. I’m sure that as much as humanly possible we will find the answers we’re meant to, in the way we’re meant to. But I need you to understand something. There is an entire field of research currently dedicated to figuring this out, as well as a whole lot of people working hard to find out the why’s and how’s of treatments. And none of that changes the fact that in this actual moment, there’s a tumor in my boob.”

She was stilled by this, so I continued, “Right this second, I am alive. And what I need is not to go to all pre-med/psych/soc/philosophical with you off a cliff. In this actual moment, what I need is to go back to sleep. I am happy to discuss this with you during business hours but right now I need sleep. And so you have to leave.”

It worked! She disappeared. And I fell back to sleep with a slight smile on my face, but not before I let myself cry for a while, just cry and let myself feel sad for all of it in a way I hadn’t allowed myself to. Sad for how scared I was. Sad for how scared 12 and 14 were. I’d lost my husband to such a vicious cancer and I’d spent so much time trying to figure so much out, and at the end of it I’d assumed nothing that bad could ever happen to us again. And then something had indeed happened, nowhere near as bad but possibly the worst thing that could happen next if you were in charge of picking out next things.

But of course, we weren’t in charge. That was clear.

Just before I drifted off, I noticed someone again beside my bed. Not her again, I thought. But it was the opposite of a supervillain.

It was my husband. My recently and dearly departed dead guy. Who was wringing his “hands” trying to use them like he used to — trying to reach for me, to soothe me, to hug me and then hold my hand while he told me everything was going to be okay. The closest he could get was a sort of energetic fist bump of his aura against mine.

It was his longing for me that pierced the veil first, his deep pull toward me as pure as anything I had ever experienced. I would give everything to be there with you now, he said. IncarnateI would come back as a bug just so I could be in a body and breathe the same air as you. Please, I need you to use your heart to feel how much I love you and how much I want to comfort you. I only have one thing to give you now and that is love. Love and reassurance. Okay, two things. Love, reassurance, and hope —

“Three things,” I said, as I laughed through my tears. And then I noticed.

He was “crying” too.

It would take meeting my amazing plastic surgeon and her PA before I was finally able to articulate that the choices facing women who go through breast cancer surgery aren’t just about repairing the changes to one’s flesh and appearance. It’s about acknowledging what breast cancer takes away. And what it doesn’t. It’s possible you could meet two women, almost demographically, diagnostically identical, and their surgical choices could be completely opposite to one another. For one woman, going flat or opting out of reconstruction is the best way for her. For another, reconstruction is the clear option. And why? Because when each woman looks in the mirror, she needs to see that she is the most herself that she’s ever been. She needs to know that her life and her body is hers and has been hers from even before that horrible phone call with the news that some misbehaving cells have been throwing a rave in her breast. She needs the chance to look up from her scarred chest and meet her gaze in the mirror. Looking herself straight in her own eyes, seeing all the loss and all the pain. All the fear. Until finally she sees something else.

What kind of fortitude had it taken for the breast cancer survivors I saw to agree to be a surgical example? To be photographed clinically, practically naked with no real control over who would see?

Maybe the women did it in the service of those who would come after, so that we who were facing surgery could get our minds around our choices and be helped by it.

Maybe they did it to honor what had been taken from them.

Or maybe the steady whisper of their courage told the truth of it in a way words could not:

This is what happenedThis is where a part of my breast was (my breasts were). This is the shape of my body now. This is exactly what it looks like, Before and After. Do yourself a favor and get a good look. It’s okay! Take your time.

Now look in my eyes. Look until you see it.

I’m still me.

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