Breast Cancer And Taco Shots

It has been five and a half years since my breast cancer diagnosis. Little did I understand the impact and changes that would occur within my person and my life because of this. In many ways, it has made me into a better person, fortified my beliefs, made me stronger and more confident. It has also challenged me to my core, stirring uncomfortable emotions that can be difficult to reconcile.

There are the physical changes to my person, my breastlessness. But there is also the side effects of the ongoing drug treatment, depression and anxiety that do not abate. As I have stepped away from acute treatment, and begun to resume life with cancer as one aspect in the over all picture of who Melanie Testa is, I learn to manage these ‘side effects’. Even if I wish I didn’t need to experience them.

My choices related to breast cancer have an effect in my primary relationship too.

In the last few years, I have embraced my overarching goal to help create space for women like myself, who choose not to reconstruct by participating in awareness raising campaigns and photo shoots. I did it because I believe that visual representation for all body types is important.

Melanie Testa photographed by Esther Hasse for perfektUNperfekt

And I have done this while my Man, beautiful person that he is, has floundered to understand and grasp his place in this story. To grasp -his loss- of my breasts. Breast cancer and the effects of treatment are long lasting and far reaching, you see.

Last September, I traveled and met up with 13 other breastless women, people, all seeking to participate in a photoshoot highlighting the diverse beauty and sexuality that we continue to possess, no matter the bodily changes breast cancer has forced upon us. I allowed myself to be the sexy, beautiful person that I am, while striving to take back my own sexual prowess after breast cancer treatment. 

Photography by Esther Haase

We had individual portraits taken, small group photos, and we took to the streets of Berlin, smoke machines, photographers and video cameras in tow, as we made a scene. We dressed as gang members, we didn’t smile, we embodied our toughest persona. We were and are a gang!

Photography by Esther Haase

It was empowering and exciting, to say the least. I balled my eyes out, it was such a huge experience. I met awesome people too. We got some gorgeous photos out of it. Me, in nothing but thigh high leather boots. Never in my life would I have thought I would do anything the like.

So, as we are diagnosed at a younger age, sex and sexuality-post breast cancer treatment, is becoming a necessary field to explore. Our mates and partners need a pathway into this discussion too. They need visuals. Visibility is key in every respect. For the survivor-of course, for our partners and mates, for all of us, really. 

Historically speaking, our sickness has been kept secret, prothesis and reconstruction replace our loss, wigs cover our bald heads until our hair grows back, we move on quietly. This is an acceptable way to go about it, of course. 

But thankfully, in recent years, we have begun to break down this barrier of silence by embracing our changed bodies as simply, the vessels that they are. Intrinsically beautiful. We are questioning and removing the ‘binds’ that stop us from talking about our changed bodies, while we adamantly refuse to be ‘quiet and move on’, because cancer is serious, and we need to find a cure.

And we become good friends as we reach deeply into the wealth of our very person, the beauty of who we really are, while a camera catches it all. Thank you good people, thank you for being my flat friends. Thank you for helping me find my sexy.

photography by Esther Haase

This is perfektUNperfekt, photography by Esther Haase.

P.S. I named this post provocatively, using the slang ‘Taco Shot’ because I don’t seem to shy away from full body nudity. You may remember my Grace portrait. 🙂


One more thing, the larger picture to the above body-positive-post-cancer-treatment essay? Stage four needs more attention. Our stage four sisters and brothers need our help in turning the tide from ‘pink profiteering’ (Komen) to funding research that saves lives.

Check out METAvivor, if you want to donate to breast cancer research.

#dontignorestageiv

Stitches pile up, life and CraftNAPA: an update

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It has been more than 2 weeks since returning from the magical event called Craft NAPA. I feel blessed to have participated. I stood among friends, watched their connection to one another, ate chocolate covered strawberries and drank deep cups of coffee while also teaching and meeting new friends.

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This is the view from Pokey’s art barn. Like so many of you, I have watched the blazing beauty that Pokey spins wherever she goes. To watch her build this barn, to see Crafting a Life unfold, to participate in her first event is an amazing endeavor. I feel gratitude, and I am honored to know her and to be able to lend my talents to her efforts.

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Indigo Perez is such a lovely person. I have watched her unfurl her wings and fledge the nest of my good friend Judy over these last few years. I have to say, Indigo is so talented, such a good person, I couldn’t wait to hug her. 

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Here are Pokey, Larissa and I. Both of these women are crazy mad talented. Larissa took my, You Can’t Resist This! soy wax resist with paint class. Her color sense and use is amazing. Not to mention, she now owns a class sample I donated to raise funds for Okizu, an organization that helps families affected by childhood cancers. 

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Jamie Fingal, Leslie Tucker Jenison, Pokey, Judy Coates PerezJane LaFazio and I recreated a photograph we took perhaps 8 years ago at MIU in Long Beach Quilt Festival. What an amazing group of people. This photo mash up was taken by Jamie.

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Midge and Libby became fast friends. I now own pieces of art made by each of these women. Happy sigh.

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Cheryl Sleboda and I were able to connect too.  She is a powerhouse. Smart, sassy and fun. Go check out her website! I bought one of her skull tShirts!

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You Can’t resist This!! Class photo.

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Journal Embroidery class photo.

Unfortunately I did not get a photo of my Small Works/Big Impact class. I am sorry about that. 

My take away from participating in this great event? I can see Craft NAPA being a creative home away from home, one that I look forward to visiting yearly. The food offerings, 8 Noodle, OxBow Market, the Napa Valley Art store? The community and commeraderie in this event sparkled bright. I hope I am asked to teach again, and I would love to take a class too.

There are so many more photos that I could have put in this post. I think I am going to upload them to Facebook instead. 🙂 Great fun, friendship, learning, and wine blending! So good, I still feel the glow of having had a great time.


 

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Upon my return and in wanting to establish creative balance after the participating in this great event, I have been stitching away the days. I am compiling a new class content for The Clever Guild. It feels great to be engaged with my creative process again and I look forward to providing opportunities to connect and learn from one another. I hope you will follow along as I dust off the site and start having some fun with it.

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I am hoping a few of you might volunteer to take the class (for free-of course), I would love some help in making sure the content is amazing. Stitch work, questions and participation is required. If you are interested, please leave a comment on this post and I will contact you with more information.

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I have been pushing the limits of layering and stitch and am quite pleased with my results. The Gather your Sew-plies purse is a great format to learn about and play around with stitch. The main purse piece is 6×14″, which makes it large enough to make a great purse, but small enough that filling it with stitch is an enjoyable affair.

Please speak up if you would like to be on my Journal Stitch crew.


 

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And then we get caught up to last night, when Joules Evans arrived in Brooklyn to attend the opening at Site:Brooklyn called American Road Trip. This is the first time Joules has had a piece shown in a gallery, and for it to be a great Brooklyn Gallery is no small feat. Congratulations Joules.

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To celebrate Joules’s accomplishment, Isis Charise photographer of Grace, Joules and I attended the opening and then walked over to Bar Tano to toast, eat and be merry. These women have been a strength and a balm to me. 

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Life is better than good.

 

A video posted by Melanie Testa (@mellytesta) on

#breastlessbeauty

If you are coming here after watching the Great Big Story piece about me, welcome.

Check out the Great Big Story video here.

 I am an artist and an activist for Flat Re/Construction due to breast cancer treatment. Going flat, not wearing breast forms, is a beautiful and vibrant option, one option among many-due to breast cancer diagnosis. Some women relate to and need reconstruction, some do not. All of us could benefit by investing in body positivity, love and respect for the one-beautiful-body you own.

Welcome to my blog and web site.

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I am working to bring 30 hand printed Breastless Beauties up to completion and hope to sell them directly from a gallery page, here on my site. I will be making a donation from the proceeds of the sales to a well researched breast cancer group, I will let you know the specifics soon.

The Beauty pictured above os Breastless Beauty 1, which you will see, by comparing the gallery image to the above image, has been stitched upon and appears different than the original. It is my hope that you might follow along, by reading posts here on the blog, as I finish hand stitching each of the Beauties in the gallery!

They are coming along quite nicely, I hope you agree.

If you would like to follow along and read some of the articles I have contributed to over the last year, please do. Huffington Post invited me to pose for an article called 24 Women Bare their Scars to Reveal the Beauty in Imperfections. Women’s Health magazine invited me to contribute to 4 Women Show the Reality of their Mastectomies in Stunning Photos. I participated in a Play Out underwear photoshoot with the essay called, Shirts Off, Underwear On: Play Out, Breast Cancer and Gender Expectations. And I participated in Grace, debuting that photos release with this essay called, The Grace to be Flat & Fabulous. I also participated in Jamie Courville‘s audio portrait called Squirrel Stories. I keep a Pinterest board specific to flat sightings across the web!

I would very much like for you to use the hashtag #breastlessbeauty. If you are a flattie, a uniboober, if you wear prosthesis or not, tag yourself with #breastlessbeauty. That way, we can find one another!

 

Shirts off, Underwear on: Play Out, Breast Cancer and Gender Expectations

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About a year and a half after my breast cancer diagnosis I was partaking in a pool program for survivors. We met at a local gym on the sixth floor where they had two pools, one for swimming laps, the other heated and used for rehabilitation purposes. The pool room was beautiful: light streamed in through large plate glass windows, and the quiet murmur of friends greeting one another and preparing for class filled the air. I stood in my Speedo one-piece bathing suit surrounded by my fellow sisters, some with a single breast, some wearing breast forms, others reconstructed. I noticed I was the only one who appeared bilaterally flat as I have chosen not to wear breast forms.

I had not been going to the class for long and did not know everyone by name yet. A spritely, lithe 70 plus year old woman ran up to me to say how brave she thought I was to go out flat and not wear breast forms. She then she went on to tell me that she had been diagnosed with breast cancer thirty years previously and had a single breast. She told me she hated wearing the breast form but could not seem to stop doing so. Her daughter kept suggesting that she go without wearing it, even if only for a quick trip to the corner store. But my spry friend could not wrap her mind around presenting a single breasted image of herself to the world. Within the simple act of being true to myself, a fellow survivor was able to relate to me and my choice and share her experience too.

After the pool program was over that day I walked the streets of New York City picking up groceries and preparing to go home. I began to think about how many women choose not to reconstruct their bodies and who also wear prostheses. As many as 58% of women who have mastectomies after cancer either do not reconstruct or do reconstruct and then later deconstruct, either out of choice or because of failed reconstruction. I pondered just how many of those breastless women disliked wearing prosthesis and presenting an image of a woman with breasts. Prior to my diagnosis, I had never knowingly met a single-breasted or bilaterally flat-chested woman. I imagine there are many women who don breast forms with hesitation, annoyance, or even resentment. Why do we feel that we need to promote the false impression that all women have breasts?

My experience at the pool that day launched me into considering how beauty ideals affect us women, and as survivors of the body altering disease called breast cancer. When first diagnosed, an unreasonable amount of attention and time are spent on cosmetic issues. We are asked to see a plastic surgeon to consider our reconstructive options, we are given a prescription to acquire a wig, flyers promoting ‘Look Good, Feel Good’ cosmetics classes are often taped to the walls of the waiting rooms we inhabit. And then if we choose not to reconstruct our body, we are given prescriptions for prostheses too. All, while battling a potentially fatal disease.

At diagnosis, my breasts were size DD, I could not imagine living with a single breast. Keeping one breast would compel me to wear prosthesis, as symmetry is important to me, both physically and mentally. I don’t like the idea of manipulating my body through surgery by inserting silicone under muscle, nor would I move muscle or fat from one part of my body to recreate an insensate semblance of a breast. These paths are counter to my idea of what it means to be a woman and a human. So, I chose bilateral mastectomy without reconstruction. In the industry, this is also sometimes called Contralateral Prophylactic Mastectomy (CPM).

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To be completely honest, it took some care, compassion and acceptance to embrace my new and changed body. There are firsts of every kind, bathing suit shopping, using a locker room, wearing summer clothing that reveals so much more of the upper body. On the beneficial side, I love not wearing bras! Sometimes folks reveal their confusion in evaluating the shape of my body, especially if I am dressed in a mannish fashion, this is always interesting to watch and disturbed my deeply at first. But there are also moments of distinct connection, like when a legless drummer, playing music with his band in the subway, looked at me, gently allowed his eyes to dip to my chest and then smiled so deeply, I still bask in the memory of the moment. It is within these deeper moments of connection where healing and acceptance reside. These, like my experience at the pool, are the moments that provide a foundation for confidence and community.

Perhaps I am an anomaly in the world of breast cancer, having chosen against reconstruction while also choosing not to wear prosthesis. I was certainly made to feel as if my choice was abnormal by my doctors when I was asked to see a psychiatrist to make sure I was of sound mind in my ‘contralateral decision making process’. At that same office, my fellow sisters who chose reconstruction were not asked to justify their surgical choice to a psychiatrist, regardless of their contralateral choices. Perhaps my doctor wanted to be entirely sure that that they would not be removing a breast that I might come to miss, and regret my decision. I could have chosen to keep the unaffected breast. There was no question that a unilateral mastectomy was medically necessary, but I chose a bilateral mastectomy – a decision I have never regretted.

This bias is unacceptable, and clearly illustrates a preference for reconstruction to the shape of a breast and breastedness in general. It also serves to make it difficult for women to choose otherwise.

This psychiatric experience was infuriating and demeaning. I made the appointment against my wishes and because I was told my doctors would not discuss surgical outcomes without this precaution. It angered me to my core to do so. The psychiatrist arrived 20 minutes late. I was so angry that my body was shaking. I had to convince this woman – a stranger – that my choice was valid. I remember making my points, one after the other while standing in awe that my anger did not blind me. I ended the conversation with, “Have I proven myself of sound mind?” She hesitated and reluctantly said “yes.”

 My doctors continued to negate my wishes repeatedly by reassuring me that I could reconstruct at any time. I had nurses respond that I would become gender confused without breasts. Perhaps the nurses who equated women to breasts are the ones who are “gender confused”.

I was also compared to a seemingly disturbed women who had tested negative for BRCA and continued to want prophylactic surgery. I asked the psychiatrist if they had a support group for women who decided against reconstruction, they did not. To add insult to injury, if I wanted to utilize the psychiatric offerings at that care facility, it would be an out of pocket expense of over 500$ per visit, as the hospital was not contracted with insurance providers for that service.

Collectively these occurrences had the effect of alienating me from my doctors and caused me to question myself and my decision making process. Through my participation in online support forums, I know that there are as many stories about reconstruction, or lack thereof, as their are women needing it. I know that not all doctors hold reconstruction in such high regard that they forget they are dealing with a woman who knows her own mind and bodily needs. I also understand that doctors need to protect themselves from malpractice suits. But here is a truth: not all women equate femininity with breasts or even like their breasts, for that matter. We are not a one size fits all category that feels comfortable committing to optional surgery that places form over function, especially considering reconstructive failure rates. (To be clear: there are three links within that last sentence)

 At the same time there has been a whirlwind of discussion stemming from the medical community questioning why women choose contralateral prophylactic mastectomy (again, three different links), which completely ignores many salient reasons. For instance, why aren’t doctors administering chemotherapy first, allowing each woman a few months time to reflect rather than react to a very shocking diagnosis? These studies do not take into account that reconstructive surgery often requires multiple revisions and corrections, which takes time away from work, creating loss of income. Women with young families often prioritize being present to their children, valuing wanting to pick their children up and hug them, over the need to heal from multiple surgeries. And, like me, some women do not want to accommodate an asymmetrical body. Choosing non-reconstruction, unilateral or bilateral, is often seen as a path of least resistance. And as far as it goes, it is an easy surgery to recover from.

 The Womans Health and Cancer Rights Act states that each woman’s insurance benefits must include reconstruction of the breast on which the mastectomy was performed, in addition to surgery and reconstruction of the other breast to produce a symmetrical appearance. It is hard wired into doctors to do the least harm, meaning it just makes more sense from their perspective to remove a single breast when a unilateral mastectomy is all that is ‘necessary’. But just as the woman who chooses reconstruction to the shape of a breast, can also choose to have surgery to adjust her remaining breast, women who go flat, sometimes choose removal of their remaining breast.

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I personally think of “contralateral prophylactic mastectomy” as a form of reconstruction, though to name it as such is misleading, bilateral mastectomy without reconstruction is more appropriate and does not reference the idea of a prophylactic qualifier. To push the idea further, flat reconstruction is the best descriptive.

The sooner doctors and researchers collectively agree that women sometimes choose flat or bilateral mastectomy without reconstruction, the better. Get out of our minds. Stop questioning our motives and start addressing the needs of the demographic. Women who choose flat, do not want to wake up to skin sparing mastectomy, which preserves skin for reconstruction to the shape of a breast mound. We do not want ‘dog ears’ or tabs of excess fat and tissue left under the arms. We want this done in a single surgery and with the least nerve damage possible. And, we want to be content with the aesthetics of our choice.

For me, beauty ideals and expectations related to the female body are a form of tyranny. I resent that in the face of a lethal disease the conversation turns to hair and wigs, reconstruction and ‘Look Good, Feel Good’ programs. I seek to bolster a new female paradigm. In this paradigm, unilateral flat and bilateral flat, as a body type is a known and acknowledged, both in the breast cancer culture as well as outside this community, prosthesis (under the skin or tucked into a breast pocket) are perceived as an option, not a conclusion. Where, if we choose to ditch prostheses we aren’t being a martyr to breast cancer but simply, a person who doesn’t present the prescribed shape of the female body. I seek a culture where we aren’t as concerned about hiding our illness as we are about healing our bodies, our minds and the earth we walk upon.

Wearing fake breasts would do nothing positive for me, physically or emotionally; I quail at the idea of presenting two body types, a breasted public image and a flat private image. I hope that as time passes, fewer women will have to fight, like I did, to make medical choices which they know to be in their own best interest. This is why I speak out.

I want women like my pool pal to see that we are beautiful with and without breasts, we are beautiful just the way we are. There is no need to wear prosthesis if you do not want to wear them. We are free agents redefining and expanding the visual of what it means to be a woman diagnosed with breast cancer. Be your authentic self, live life your way. If that includes wearing breast forms, great, but if you don’t want to wear prosthesis, do not feel compelled to present an image that is not your own.

If I had my way, these images would be projected onto the tallest building in Times Square. The fashion industry would see the potential market in our demographic and start making single breasted and bilaterally flat-forward fashions. Breast cancer awareness websites would show flat and half-flat bodies alongside seemingly reconstructed and happy survivors, and doctors would trust and get to know their patients, while supporting a diversity of reconstructive choice. 

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No one should feel compelled to present a shape that is not true to themselves.


 Happy Valentine’s Day.

I am thankful to Play Out, Emily Jensen of FlatTopper Pride and Jodi Jaecks for creating a platform to discuss gender, breast cancer and stepping outside bodily norms.  We have curated a linked series of essays by and about three queer, bilaterally flat women, myself included. We took these images, sexy, fresh and vibrant, to accompany and assist a in discussion we feel is both ripe and timely.

Please follow these links, read the essays, comment, like and share to social media.


 

 Emily thinks outside the box. I love reading her thoughts and ideas. Here is a clip from her essay:

I see the crisis state of cancer and loss of supposed “female” body parts as a schism ripe for effecting change personally and culturally. I urge you as Lorde urges us to: “Inhabit cancer not as a victim but as an agent” (82).

To be working with Jodi Jaecks is a blessing. I heard the nationally syndicated story of her challenge to the Seattle Parks and Recreation to allow her to swim topless, in her breastless state. This story splashed the press just at a low point in my healing and recovery from breast cancer treatment. Read her essay here. But this is a great excerpt: 

I am grateful to Play Out for embodying the ethos of which I trumpet – in their words, images, deeds and products. Frankly, I don’t want this to be about gender identity or sexual preference identity. Unisex, indeed.

Abby and Sylvie, owners of Play Out Underwear made a great leap of faith in producing this project. I am glad to have been invited, thank you, Abby and Sylvie. Here is an excerpt of Abby’s essay:

Instead of just looking at the pictures and saying “how brave, she survived this illness” we ask people to look at the pictures and say, “how brave, this person is challenging society’s expectations.” And winning.

View the rest of the photos taken at the two photoshoots here.

Nomi Ellenson Photography did a fantastic job, these photos are sexy, fun and playful. Just like me.

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That’s me and Rain Dove! 🙂 Rain Dove is an inspiration. Keep up the good work, girl.

Bronwyn Karle, I love both my hair and makeup and now want to check out dry shampoo. Who knew.


 

If you would like to read more of my writings and rants, check out my post The Grace to be Flat and Fabulous, and listen to Jamie Courville’s audio sculpture by checking out this post called Squirrells Stories and then there is my oldie but goodie at Role Reboot, I Chose to Live as a Flat Chested Woman After Breast Cancer.

If you would like to continue this discussion, please include these hashtags: 

Please discuss, like and Share.

‪#‎breastcancer‬ ‪#‎breastcancerawareness‬ ‪#‎fuckcancer‬ ‪#‎gender‬ ‪#‎genderqueer‬‪#‎flattopperpride‬ 

‪#‎playoutnyc‬ ‪#‎lgbt‬ ‪#‎breastreconstruction‬ ‪#‎queer‬‪#‎flatreconstruction‬ ‪#‎support‬ ‪#‎breastlessbeauty‬ ‪#‎queerbreastcancersupport‬‪#‎PlayOutUnderwear‬ Nomi Ellenson Photography Bronwyn Karle Rain Dove

Thank you.

 Melly

Squirrels Stories

A few months ago, I was approached by an artist and producer named Jamie Courville to see if I might contribute to a project called Squirrels Stories. Jamie says, “A linguist told me “squirrels” is the hardest word to say in the English language. Squirrels Stories is the place for the things that are difficult to talk about.” With an intro like that, how could I say no?

What follows is a cut and paste from Jamie’s web site:


 

Squirrels Stories has a new audio portrait to warm your ears JamieCourvilleMelly1 Hello. How are you? I started this project to give a voice to people living in difficult circumstances, and to let their friends and family members better understand what they were going through. Many of us are dealing with cancer in one way or another, but we are bad at talking about it. Squirrels Stories is an attempt to narrow that gap. Melanie is an incredibly talented textile artist and craftbook designer living in Brooklyn. After her breast cancer diagnosis, she chose not to reconstruct her body. JamieCourvilleMelly2 Please listen to Melanie’s story here.

You can read more about Melanie and her work on her website. She also participated in the Grace Project. For more information on living a FLAT & Fabulous life, click here.

Of course, there are many other Squirrels Stories to listen to. Please share these so they can reach as many ears as possible. I want to thank everyone who has participated in this project. There are a lot more stories of everyday people facing difficult situations. There is a lot of work to do. Looking forward, Jamie Courville I am always looking to produce portraits for individuals and organizations to help them tell their story. Please contact Jamie to talk about it.