Awash with Wonder

to mastectomy or not to mastectomy

Shannon ButlerComment

The form of breast cancer that I have is not invasive but the treatment for it is.

The problem is doctors don't know when DCIS  will become invasive so they're incredibly aggressive in their treatment of it. There is actually little difference between the treatment I'd receive if I did have invasive breast cancer and the one for my current diagnosis; there is so much they don't know that the answer seems to be "we know that if we remove the breast entirely, the chances of developing cancer are dramatically reduced, so let's go with that". It feels a little like discovering a broken window and deciding to demolish the entire house. 

My options are:

 1) Remove my entire breast and hope that I don't spend the rest of my life feeling like I underwent a traumatic surgery that was ultimately unnecessary 

or

2) Do nothing and hope I don't develop invasive breast cancer 

A lot of people have sent me links to alternative treatments. I appreciate their intent and I know its done out of love. I share so many of their concerns. A lot of people are distrustful of the medical industry because it does seem that medical professionals are operating with only 1/10 of the information they need and are so unwilling to even consider an integrative approach to medicine. I personally trust that my doctors are doing the best with what they know -- and that they know a lot more than me. However, I am also incredibly frustrated that more time, energy and money is not going into developing an alternative treatment for DCIS than mastectomies. I do not see this treatment as a cure for the diagnosis; it seems, instead, like a surrender, an admittance that no matter how much we progress, there is so much about the body we do not understand. 

I am still more inclined to chop my breast off than I am to entertain an alternative treatment though. Why? Fear. 

There is no room for fear in an ordinary life and yet it is present in every ordinary life. We're all operating with some degree of fear, some of it named and some of it not, and we do the best we can to live in spite of that fear. We have to because there are bills to pay, shifts to work, and people to care for. No one has the luxury to be paralyzed by fear. When you are given a diagnosis, your fear of the unknown multiplies by about a million. You do not want to die and you want to close down as many avenues to death as possible. Even when the diagnosis is not fatal, the threat that it might become fatal is enough to send you into survival mode. Tell me that if someone said to you "There is something in your breast that could kill you", you would say "Okay, maybe I'll go on a  juice fast" or "Maybe I'll smoke more weed" and not "Chop it off immediately". Yes, I could experiment with the latter options before opting for the first one, but that assumes that I can do so and continue to live my life without allowing fear to rob me of my joy.  I don't think I could. 

Unless you yourself have been cured through an alternative treatment -- you didn't watch a documentary, you didn't hear about it from a friend of a friend, you didn't read a blog -- then it is not helpful to suggest one to someone who is doing their best to not be overwhelmed by fear.  It is the same as telling a non believer -- which I am -- that God will heal me. It requires a faith  I do not have. I have read everything. I have googled the phrase "alternative treatments for DCIS" a hundred different times and all I find are more unknowns. Is having a mastectomy the best way to treat DCIS? No. It's fucking awful. But I also know with 100% certainty that it won't kill me and that certainty matters. 

I learned that the lump in my breast was not benign and that I would have to have a mastectomy in the same appointment. They also used words like "non-invasive" and "pre-cancerous" though; words so completely at odds with the reality of removing my entire breast that it was hard to grasp the enormity of that treatment. Weeks and many appointments later, I understand the enormity now. 

I begun to understand when my doctors looked me over in all my appointments, while I was fully clothed, and said, "It doesn't look like you have enough fat for the autologous reconstruction"; it hit me fully when the plastic surgeon was pinching various parts of my naked body and said "oh dear, there's not enough fat here" -- the first time I've ever heard that said like it's a bad thing. I learned in that appointment that breast reconstruction after mastectomy is nothing like getting an elective cosmetic breast surgery (a thought I'd be comforting myself with) and that if you have to have one, the autologous is what you want. Then, at least, you have a breast made up of fat tissues from your body that will behave in a similar way to your other breast. With an implant surgery, I will have a right breast that will look nothing like my left. Oh, and I won't have a nipple. You really don't realize how attached you are to your nipples until you're not allowed to keep them because they might kill you.  Also, if I'd had the choice, I'd would have like to keep my right over my left breast because at least the right doesn't have my ex boyfriend's initial tattooed on it. 

But I don't have that choice. I have very few choices. In fact, my biggest choice now is dependent on getting my genetic test results back, where I'll then get to decide whether I want to have a bilateral mastectomy or just have one breast removed. I'm at the point where getting BOTH breasts removed seems like good news because at least my fake boobs will look the same. All of this is happening while the phrase "you don't even have real cancer" loops constantly in my head. It seems absurd that I even have to make these choices. And yet, here I am. 

I have to face the reality that I'm replacing a breast that might kill me for a noticeably fake breast that I might hate.  I am doing the best I can with what I know. I have to make decisions now at 25 that 35 year old, 45 year old, 65 year old me will have to live with and I feel the weight of that. But I'm also trying to make the choice that lets 35 year old, 45 year old, 65 year old me live.  I've tried to simplify it down to one question and when I ask, "Do you want to keep your breast or do you want to live?" there really is only one choice. 

why not me?

Shannon ButlerComment

My boyfriend and I have an ongoing joke about my comically low expectations for my own and everyone else's life expectancy. It started when he made a flippant comment about living a long life and I responded, deadpan, "but you're going to get cancer!". I know this is not a great thing to say to someone you love. I didn't WANT him to get cancer, but it just seemed inevitable that he would. And if not cancer, then some other disease or accident, which would put his long life on pause if not end it entirely. I know this seems negative but it doesn't feel that way to me. Being aware of my own mortality keeps my wants simple and my joy genuine. Nothing is promised and everything is extraordinary. 

And now I have cancer. Much sooner than I anticipated I ever would, yes, but all that's done for me is confirm that assuming your life will go a certain way is futile. You get what you get and you just have to hope that it doesn't kill you...until it eventually does. The world is vast and full of suffering; the question is never "why me?" but "why not me?" 

After the initial shock, I've been almost...unaffected by my diagnosis. I have moments when I am deeply affected. Like when I am lying facedown in an MRI machine and it is impossible to pretend that I am not a sick person. But then moments later Justin Bieber's "love yourself" will be piped through my headphones and I'll feel a kind of joy that life can be so silly; I feel that joy while snot is dripping down my nose from crying, unable to wipe it because I have to lie perfectly still for thirty minutes, but it's joy all the same. Later in the day, at an appointment with a geneticist, where I am told that I may have one of three genes that makes a whole myriad of cancers increasingly likely for me, I do not feel that same moment of upset that I did when I first entered the MRI machine.

Instead all I think is, "Well, that's some new information about me" as if I am discovering a new skill, instead of, I don't know, the million ways my body might betray me. When I respond "You might as well take them both if you're going to take one" to my doctor's question about whether I'd be comfortable having a bilateral mastectomy, I think she is tempted to remind me that we're discussing major surgery on my body and not a two-for-one deal at a yard sale. 

I know that my response is not the response that people want; they think it's denial or a refusal to be vulnerable. They want to be able to support me and are left helpless and flummoxed when I appear almost unchanged. It might be denial, who knows. All I do know is that in the grand scheme of things, a loss of a boob does not seem like the worst thing that can happen to a person. That this diagnosis is the worst thing that has ever happened to me even feels a little bit lucky. 

As I've grown up, I've become increasingly aware of my privilege. I am a white person with a British passport, who has been able to move over the world freely and to find employment, education and love in all those places. If I had a penis, I'd move into the top ten percent of the most privileged people in the world. In the week that I found out about my cancer, 49 people were murdered in a LGBT nightclub in Orlando, a place a called home for 7 years. In that same week, I listened to people I once loved like family, people who have irrevocably changed the course of my life, use the kind of racist and ignorant rhetoric that I know denies millions of people basic rights as well as actively endangering their lives. 

These two events dwarfed the shock of my diagnosis. I know that there is no hierarchy of suffering - that each individual experience of suffering has as much weight as another - but a non-life threatening case of breast cancer still does not seem to weigh the scales in the same way that systemic oppression does. My suffering is finite and survivable whereas so many other people's is not. There is no way for them to overcome it, to get to the other side -- and none of them are being called brave for simply continuing to live. I've always been more affected by universal pain than individual pain though, even when that individual is me. 

However, I am surprised by my own non-reaction; I am constantly doing a catalogue of my own emotions to make sure I'm not repressing a mountain of shit that will erupt later. It's highly likely that I am completely unprepared for the reality of my treatment and the aftermath. I am reminded of a story a professor told me once, of people who lived on a remote island, completely isolated from the rest of the world. When ships appeared on the horizon, bringing with them settlers (and no doubt murderers who would claim to have "discovered" an already inhabited land), the native people could not see the ships. They couldn't see them because they did not expect to see them. Their lack of knowledge caused a temporary blindness. Now, this story might be completely fabricated but the point remains the same: we cannot know what we do not know. 

I have quite literally no idea what it will feel like to have a breast removed and rebuilt. I have no idea if I am about to enter a new phase of life where every day will be a new lesson in accepting my body. I don't know if this experience will affect my confidence in such a profound way that I become an entirely new person.  There is so much that I don't know that it's easier to focus on what I do know.

What I do know is how much I have enjoyed my life so far. All of it, even the heartache, has been a gift. I love being mortal. I love being human.  I love being fragile. I love being important and insignificant and I love being just another tiny person in a sea of other important, insignificant people. 

Years ago, I discovered a poem by Robert Carver called Late Fragment, which has become the only poem I know off by heart and is the siren song of my heart.

And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.

When I discovered that poem, I would not have been able to answer "yes" to that first question, but I knew that the writer's answer was the thing I most wanted in the world. At 19, heartbroken over a boy who no longer loved me, I got the word beloved tattooed behind my ear. I gave myself a new name and then gave myself a few years to grow into it. Beloved is my primary state of being now. Not only because I am with a man so profoundly good that it feels like a small miracle to be loved by him,  but because the entire experience of being alive feels like one long surprising lesson in love. I just don't see how the loss of a boob could do anything to affect the truth of that. 

the c word

Shannon ButlerComment

I have cancer. 

Well, not exactly cancer, more like a prelude to cancer. Not enough cancer to kill me but definitely enough to fuck up my life for who-knows-how-long. The doctors first described the lump in my breast as precancerous — after months of describing it as benign — but then proceeded to give me a brochure that said in the second paragraph, “this condition is sometimes incorrectly described as precancerous”. So if we’re going to get technical, it’s actually the earliest form of breast cancer — a kind that’s not yet invasive. That “not yet” is a problem. 

The good news is that so far they have not told me that I need chemotherapy, so I won’t lose my long hair, which I love. The bad news is that I will most likely need a mastectomy, so I will lose one of my breasts, which I happen to also love. 

It’s funny how much of my life has been spent learning to love my body. My body! This gift I was given at birth and that has taken me all over the world. I went to Italy last month and felt chubby, but I thought to myself, “I don’t care. I’m not going to let my feelings about my body stop me from living my life”. So I wore a bikini and celebrated the progress I had made. I wasn’t going to hate myself because I was a size 10 (ridiculous) instead of a size 8 (doubly ridiculous). This tiny act of personal rebellion — the choice to stop feeling bad about my body — actually made me feel excited about the rest of my life. I felt free. 

Then I came home and went for a biopsy on the lump on my breast that’s been bothering me for two years. At this appointment, they told me they didn’t even think I needed a biopsy because the lump seems benign and I’m so young (25!), but they would do it anyway, just in case. Thank fuck for that just in case. Then in my follow up appointment, they opened with a surprise breast exam (always fun) and the sentence, “You will most likely need a mastectomy”. Everything after that was just a bunch of words. All I could think of was my body, which I finally, finally loved, saw as an integral part of myself instead of some meat suit my brain happened to live in, and how it was betraying me. Was it because of all the sugar? I’m sorry about the sugar. (I’m not sorry about the sugar; I love cake.)

There is a special voice that doctors and nurses adopt when they are telling you bad news and guiding you through the aftermath of it. That voice is terrifying and infuriating. The tone is supposed to convey compassion and comfort, but all it does is “other” me. Instead of being a person that can be spoken to in a normal way, all information now needs to be wrapped in verbal kid gloves. As soon as I begin to hear the suggestion of that tone, I immediately want to end my appointment and go home so I can google it. Google is a different kind of terrifying but it’s a fear I can handle better. 

There is fear, of course. There is fear of surgery, of the hours I will spend unconscious and vulnerable. There is a fear of the recovery, of both the pain and the inevitable boredom. There is fear of the reconstruction, of what it will involve, what it will look like, how much it will hurt. There is the nameless, endless fear of my new body and the work I will have to do to love it. There is the fear that I won’t love it at all and will instead just have to tolerate it.

I try not to dwell on the fear because I worry that it will overwhelm me if I do. So instead I am mostly angry. 

Gratitude is always expected in these situations. I get to be shocked and scared and furious at the unfairness of it. But then comes gratitude for all the other case scenarios that are not happening. At least I don’t have a terminal cancer or even a life threatening one at this point. At least the surgeons are incredibly good and will most likely give me a new, beautiful boob (to which I say, “I don’t care! I already have breasts that I love and they are MINE!”). There are endless things to be grateful for, and because of that, I have a childish need to be belligerently ungrateful.   

I am not ungrateful though, not really. I am very grateful to have so many people to call with bad news, to know that there is not just one person but plenty of people who want to help me. The truth of that is staggering. I am grateful that I do not have to fear for my life. I am grateful that my overwhelming feeling is one of being inconvenienced. 

Seriously, most of the time, I just feel profoundly inconvenienced. 

I am pissed that I have to take a break from my life. I do not want to be a sick person, do not want to be a person taking time to recover. I do not want to go to the hospital on every one of my off days with endless MRI’s, mammograms, results discussing, plastic surgery meetings. I want to continue living my life blissfully uninterrupted by something as unfortunate as a mastectomy. 

But as life is insistent on teaching me: we do not always get the things we want. Not the people we love and want to hold on to. Not our dream of a certain kind of life. Not even the right to keep the body parts you were born with. Instead we get whatever we’re dealt and the choice to make the best of it. 

So, I want to decide what making the best of it means to me before I have a treatment plan and a surgery date; before this diagnosis becomes something irreversible and life-changing instead of just kind of annoying. It starts with writing this post. Writing has always been a way for me to reimagine myself, to write into being the kind of person I'd most like to be, and then step into that outline. And then I'm going to, perhaps naively, choose to view this whole thing as an inconvenience. It's a short intermission in a life that a truly love, and when it's over, I'll go right back to being excited about my future. I hope -- I hope so desperately -- that my future is going to be lived in a body that allows me to feel free. In some ways it definitely will be, because at least I'll be free of this particular kind of cancer. Silver linings and all that. 

 

 

when you don't want to write about yourself anymore

PersonalShannon ButlerComment

I read a lot about the economics of the personal essay industry, and what it demands of the women who mine their personal lives to feed it. I'm interested because I have contributed to the medium in my own small way, even though I have never been brave enough to venture further than this blog. I am brave here because I delude myself into thinking I control the perimeter and boundaries of this rented real estate, and then am reminded anew of my complete lack of control -- and vulnerability -- every time a new acquaintance mentions that they read it. There is no ownership on the internet, and increasingly, there aren't any boundaries either. 

It is primarily women who write personal essays. 

Part of it is a revolution: we have had centuries of silencing, and the internet is now allowing us to be vocal authorities on our own experiences. It is a way of saying, "I matter, my life matters, and I am going to tell my stories". That was my motivation for starting...but then there is another part. It is this part that leads to my long absences from blogging and writing.  A lot of woman start writing personal essays because they believe it is the only kind of writing they can do. We are not accustomed to believing ourselves experts on everything, to expecting that other people will want to hear our perspective, in the same way that men are (or at least the ones that are so eager to #wellactually you on Twitter). So we turn our gaze inward, to the one thing we can tentatively stake a claim to: ourselves. 

If you do this on a big enough level and have uncaring editors, you open yourself to the kind of criticism that could destroy you. If you do it on a smaller level, like a personal blog, let's say, you engage in a semi-public journey into discovering and creating yourself. It can be healing. It can be even be helpful to the handful of people who see themselves in your doubt, your small triumphs, your stumbling path towards grace or understanding or whatever nirvana it is we're all headed to. It can also be limiting and unhealthy and...boring.

After four years of personal essay writing, I don't have any desire to share my stories anymore. Not because I don't think they're important, but because I don't want to perform them. I want them to belong to me and my selective, faulty memory. I want to belong only to myself. But I still want to write. It feels like the loss of something important to no longer write. My thoughts feel duller, less interesting, since I stopped actively looking at the world with a writer's eye. 

I am no longer naive enough to believe that being a writer is the most noble thing you can do with your life; I do not mythicize my favorite writers into god-like proportions anymore. But reading truly transcendent writing is the closest I get to religious experiences these days, and I am a person who loves words to an almost pathological level. I am buoyed, joyed by an excellent turn of phrase -- I'll roll it around in my mouth for minutes after reading it -- and I am stupidly offended by ugly writing. To contribute, in whatever tiny, forgettable way, to capturing the world in words feels important to me in a way that few other things do. But I do not know how to remove myself from my writing, to cast my gaze outwards, to claim ownership on any idea other than the small kingdom of myself, so my fingers are still, and my mind is quiet, and the world is shrinking. 

It is not an entirely unpleasant shrinking. It is nice to exist in the present. But it does call my idea of myself into question. If I am not someone who writes, then who am I? How will I define myself in a way that is not related to other people? The next natural step is to begin to write poorly-informed and nauseatingly simplistic advice type pieces  -- which you'll find a lot of in the early entries on this blog and even some recent ones -- but my conscious won't allow it. I could throw myself into spreading positivity and empowerment...but I want any readers I have to continue to be the authorities on themselves and to feel free to be kinda fucked up and occasionally sad and not bubblegum happy every single second of every single day.

So, I am an at an impasse: the desire to write but the inability to write about anything other than, well, me. There is no neat ending to this post, no comforting resolution, in the same way that there never is in life. All there ever is choices and the next step -- whether that's going to along a similar path or a turn in an entirely new direction. This is, I suppose, just me popping by to say that I'm still here, still have a trembling grasp on my identity as a person who writes, and I'll make the next step sometime soon. 

madly involved

Shannon ButlerComment

In the opening verse of 'Crack Rock', Frank Ocean sings "cause she was and you are madly involved" and then immediately repeats "madly involved" incase the listener didn't realise the significance of the involvement. As this is a verse that starts with "you don't know how little you matter" and is about smoking crack, we can infer that the involvement is toxic. It is not an involvement anyone should aspire to, but there is something about madly involved that sounds like love. 

We are all looking for the comfort of being undeniably involved, lives so tangled together that separating them is unthinkable. There is a madness in the depth of our involvements with each other though, because they go unnoticed until it’s too late. You meet someone in a bar and a year later they’re named on your lease and three decades later you’re welcoming your first grandchild. All of this because you liked their smile. Madly is the linchpin to involvement, and it's only when the madness has dissipated that you realise how deeply involved you are. 

In White Teeth, Zadie Smith writes “involved is neither good, nor bad. It is just a consequence of living, a consequence of occupation and immigration, of empires and expansion, of living in each other’s pockets… one becomes involved and it is a long trek back to being uninvolved” and the romantic in me despairs at her replacement of love with proximity, but I can’t argue with her. Proximity is how I ended up in Hawaii, on Christmas day, with the entire extended family of a boy who smiled at me in class a month before.  I know the power of proximity and the heady intoxication of involvement, and it’s why I’m now more protective of my personal space than I’ve ever been before. 

That space is both protected and protective because I am finally experiencing the gift of aloneness unencumbered by loneliness. There is nothing that I will not do alone and every meal, every movie, every evening spent in my own company thrills me. When I wake and think, “I want to go to breakfast today”, my freedom to do so encourages me to think, “Perhaps I will move to New Zealand next month or start acting classes or develop a one woman burlesque show”. There is no end to the things I might do alone. 

Later in the same passage, Smith writes that involvement “is an enormous web you spin to catch yourself” and the imagery is dangerous. You are both the spider and the unsuspecting fly. Hers is a more subtle interpretation of Ocean’s mad involvement, looked at from a different angle, but the results are the same: a destruction of self that you don't see coming. 

Visiting my family a few weeks ago, I was immediately transported to a universe of attachment. It is difficult to love people and be so profoundly involved with each other's histories; there is no room to forget.  I looked at us, still bruising from ten year old hurts, and I wanted to tell all of them to un-involve themselves from each other, to buy a ticket for somewhere new, leave for a decade and come back unhinged from the past. It wouldn't work. We would all walk into the same room and resume the silk-spinning of a generations old web. And anyway, they can't, so deeply, importantly involved with each other and the new additions to the family. Still, I wanted solitude to be the solution. 

Returning to my selfish solitude on the train home, I thought a lot about this gift of aloneness and how few people truly get to experience it. Loneliness we get in spades, involvement, too, but contentment in our own company and the time to enjoy it often proves elusive. We're always getting accidentally involved. Whenever I ask a couple in my family how they met and why they stayed, their answers are so breathtakingly circumstantial, and now look at all of us, barely hanging on but irrevocably connected. 

I read the Sunlit Night by Rebecca Dinerstein on the journey home and she coincidentally echoes Smith's imagery but elaborates, describing the web as something "we depended on as much as we wanted out of it". There is no out; there is no leaving; there are no human islands. As soon as I step off the train, I am already heading towards new involvements, the gossamer threads of the old ones trailing behind me, unable to achieve the simplicity of an uninvolved life for longer than a single journey. But perhaps this is all any of us need. Just a brief moment of respite, time where we are infinite in our aloneness, where pasts cease to matter and futures are not dependant on someone else’s whims. Then we can return to our involvements, present and ready, and continue to support and survive each other.