Parenting Through Breast Cancer And Beyond

Originally published by The Underbelly on April 10, 2018

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I was diagnosed with breast cancer over the summer of 2009. My husband and I were about to get married, merging our two smaller families and moving the smallest of the two—mine—across two bridges, an interstate, and two parkways.  Our children were six and ten months apart; my son became the “middle child” overnight.  They were nine, nine-and-a-half, and ten years old, and the transition from buddies to siblings was boisterous, busy, and messy as we unpacked boxes, played, and explored the local area.  While they slept or entertained themselves, I frantically researched area doctors and healthcare options.  I wanted to keep things as normal as possible for the kids, and we waited to tell them the news of my diagnosis until we had more information to go by.

Needless to say, it was a relief when school started. It was easier to get to appointments, do research, and process fears about my diagnosis and the unknown ahead.  I was able to let down my guard—to cry if I needed, go for a nature walk by myself, or reach out to a comforting ear.  Then I would pull it together again in time to pick them up from school.

Now, A Plan

After a number of “second opinions” I settled on a medical team and plan of action. My surgery was scheduled for October.  We told the kids and their teachers.  Our house was half a mile from the elementary school.  I walked them to school each morning, and met them in the afternoon to accompany them home.  I answered their questions honestly but simply.  Our new, larger family had been together less than three months before my mastectomy.

My husband was able to take off two weeks from work when I had surgery. He had little prior experience in the kitchen, and the week he went back to work, the kids were begging me to start cooking again.  I knew I wasn’t up for it, but they offered to help.  Soon they were all enthusiastically chopping vegetables.  Whoever attempted to tackle the onions was tearing fiercely.  I don’t remember which one thought of it, but they ran to the toolbox and pulled out the goggles to protect their eyes.  We laughed so hard!  It looked ridiculous, but we managed to finish the meal together.  Everybody stepped up to help out.  They didn’t always want to, and couldn’t truly understand what it was like to be recovering from surgery and juggling homework questions and sibling squabbles.

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Everyone helping, even if goggles were needed.

I remember the first afternoon I walked to meet them at the school, when my husband had returned to work. I was light-headed and exhausted, and one of the kids started complaining about being tired and how long the walk home was, and I realized they had no clue how much pain I was in.  Sometimes I told them . . . but more often I tried to steady myself, take a deep breath and find something else to focus on—because whenever I expressed how lousy I was feeling, it never seemed to improve any of our moods. I was better off finding other outlets to express the heaviness of my experience.  Walking at the beach, writing in my journal, and heart-to-heart talks with my grown up support system helped me be more balanced and present for my kids.

Sometimes, their innocence would be so sweet, as they slipped one of their hands inside mine, hugged me carefully, or asked quietly if I was going to be ok. I struggled with Halloween costumes; the Superman cape for our oldest wasn’t finished before my surgery.  Soon after I had clearance to begin driving, we trekked through unknown territory to buy paint and supplies to finish the others.  I remember feeling so weak that I wasn’t sure I would be able to stand, but gradually found the places I could push through and the limits where my body demanded I stop everything and rest.  My step-son’s cape was done the day before Halloween.  Ten-year-old Superman surprised me, kissing me on the nose, and initiating an “I love you” himself for the first time.

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Superman

Mothering and Healing

Healing was a combination of what felt at the time like growth mixed with setbacks: nausea, exhaustion, trying to meet as many of my own needs and my family’s needs as I could, and having to ask everyone else to rise up to fill in the blanks. I did better when I lowered my expectations of us all.  Focusing on the fact that we were fed and clothed each day and basically got along was far more productive than thinking about all of the things I couldn’t do while recovering, or if someone else in the household did chores differently—or less thoroughly—than I ordinarily would have.

Looking back from my current vantage point, each seeming step backward was as much a part of our individual and family growth as the moments where the children shone. There was a rather constant stream of questions: when would I be up for doing such-and-such a project, when could we get a dog, when could I do my step-daughter’s nails, when could we visit this or that friend… I think we were all trying to gauge our current family situation and what of our “new normal” would pass, and when.  I was much more irritable than usual, and the kids seemed to test limits regularly with one another and with me.  When my husband came home from work, all three ran to greet him with big hugs.  I felt woefully inadequate at times.

Eventually, I grew stronger again. I found my sense of humor one day.  It had been tucked away in some nearly forgotten corner, and took us all by surprise when it was discovered and dusted off.  We used to joke around together regularly, but for what seemed like a long time, I hadn’t fully been myself.  My mother had a terrific sense of humor despite a lifetime of chronic illness.  This skill did not come naturally to me; I had to work hard at cultivating it.  We ate dinner in the yard on a blanket, on a sheet in the living room; eventually at the park or the beach.  There were many mature moments: our kids pitching in to fold laundry, set the table or sweep, and selflessly sharing prized possessions to help build harmony.

Growing Together

Four years later, I prepared for my second mastectomy, which was prophylactic. In the interim, I had regained my strength; known the joy of motherhood once more, and heartache from the loss of my beloved mother.

I came across a book about a girl whose mom had breast cancer. The story was a good starting place, but not everything applied to our situation.  I decided to rewrite the parts that differed from our story, and substituted the terminology I was using with my two-year-old.  I pasted my newly edited version over key parts of the book, and read it regularly with my daughter.  Our older children knew what to expect, but I knew my littlest needed more preparation.  I struggled finding simple words to explain why I was having my breast removed and what it would be like while I was recovering.  My daughter called my breast my ‘nurser’ because it was literally the part of my body that nursed (breastfed) her.  I decided to focus on terminology she could understand, and hold off on introducing heavy vocab words like “cancer,” “genetics,” and “BRCA” until she was older.

My little one used to fall asleep with her head nestled on my singular breast. I savored those special naptime and bedtime snuggles.  After my second mastectomy, I was no longer able to hold her in that way.  Even after my incisions had healed, the weight of her head was uncomfortable to me, and with my lack of soft tissue, she couldn’t get comfortable.  We kept hoping that we would find a new special way to snuggle at bedtime.  Sadly, every new position we tried didn’t feel right.  My daughter sought out my curves and soft spots.  Her hand would gravitate to my throat most often, which felt constricting to me.  Sometimes she would reach for my cheek, or put her hand on my belly.  Nothing seemed to satisfy her need for closeness the way our special snuggle had.

Individual Needs

I did my best to support my daughter in her process. I knew she was grieving and trying to understand what had happened.  Sometimes she lashed out with big, uncomfortable feelings.  One day, a couple months after my surgery, she asked if she could touch my chest.  The incisions had closed, and I decided to let her.  She had stopped breastfeeding shortly before my surgery.  My breast had literally nourished and nurtured her.  Her little hand touched my scars so gently, so tenderly, and I could not hold my tears back.  She asked what had happened to my ‘nurser.’

“It’s gone to the final resting place,” I told her.  This had been my answer about where my mother had gone, the robin we found on one of our morning walks that we buried, and where we knew our dog (struggling with cancer) would be heading soon.  My answer was a beginning—I wasn’t sure how to convey the rest, and my daughter couldn’t find the words to ask more questions at that time.  I told her that my scars are very close to my heart and that the heart is full of love.  This was enough for now, for us to be present with one another, to allow her to process in her own way, and for me to be gentle with myself through this process.

One night, my daughter awoke from a bad dream, saying, “I want you to be with me allthe time.”  I love how well she was able to express herself and her needs.  Prior to my surgery, I was always the one to put her to sleep.  I missed a handful of nap times during my mother’s illness when my husband or a dear friend would watch her.  After my surgery, for many weeks, my husband was the one who put her to sleep.

My ovaries had been removed at the same time as my breast and implant, so I could have one recuperation period. This meant that my little one could not even sit on my lap for six long weeks.  Although she understood that I was healing and did not want to hurt me, it was difficult to find other ways of providing physical comfort and snuggling.  Sometimes I would put my arm around her as she sat next to me, with pillows around and between us.   It was a tremendous relief to both of us as the pillows lessened, and as she was able to resume sitting on my lap and being held.

When spring came, we spent more time outside. We planted and watered the garden plants as usual, although slower than most other years.  My daughter would say, “Come, Mama.  Let’s sit and watch the plants grow,” with great excitement.  And we would sit.  I pointed to the birds as they flew by, and she learned them by sight and their songs.  She dug in the dirt as I pulled weeds.  Slowly, my strength and energy crept back.

About five months after my surgery, nearing my daughter’s third birthday, I was putting her to bed, and she asked if she could see my ‘nurser.’  She seldom asked about it anymore, and I had been surprised at her request.  I reminded her that it was not there anymore, but she was welcome to look at the ‘nurser area’ if she wanted to.  She looked at my chest for a long moment and then put her head on my belly.  Seeming genuinely perplexed, she asked me where my ‘nurser’ had gone, as though it might have migrated somewhere else.  She kept asking, “but where is it?”  My simple ‘final resting place’ answer no longer sufficed.

I explained to my daughter that my first ‘nurser’ was broken a long time ago, that it had to go to the ‘final resting place’ because it was broken, before she was born.  I told her that my doctor was afraid that my other ‘nurser’ would break.  I had said this much before.  Something allowed me in the moment to go deeper with her this time, and I told her that if my ‘nurser’ broke, it would have made me very sick.  My ‘nursers’ went to the ‘final resting place’ so that I did not have to go there, so that I could stay here with her.

“I have no ‘nursers,’ but we have each other,” I explained.

She really seemed to take this all in.  I hadn’t wanted to use heavy vocabulary with her or to burden her with the reality of breast cancer and hereditary risk factors at such a young age.  Yet she wanted and deserved to know what was going on.

The next evening at bedtime, my daughter sat up next to me and began rubbing her fingers together, slightly above and over my chest.  I asked her what she was doing.  “Sprinkling soil and water,” she told me.  “Like in the garden?” I asked.  She nodded her head and said, “So it will grow.” My ‘nurser.’ I was deeply moved by her profound understanding of the cycles of life.  We plant seeds, tend them, and they grow.  At the end of the season, the living part of the plants brown and become part of the soil that will nourish new life again in the spring.

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My daughter at sunset © Rebecca Pine

That tender moment between us seemed to foster deep-set healing.  She never repeated the gesture, nor showed disappointment that my ‘nurser’ did not regrow.  It did nurture the seeds of the heart—her tenderness and my tears enabled us both to express wordless emotions.  Like dry earth quenched after a long rain, there was a new level of understanding between us.

My explanation of the ‘final resting place’ evolved to be far less ‘final’ than it sounds. The word ‘final’ was selected, not because I believed that this was where life ends, but to define the difficult to explain change that happens when life-as-we-know-it ceases to exist.  Eventually, ‘The Beyond’ became the term I used to describe the unnamable dimension following the ‘final’ rest.

It has been important to allow each of my children to process their losses in the way best suited to them, and to support them in their process. In return, I have found clarity of my own.  Parenting has a way of helping us distill our views of the world.  It also presses us to expand them—especially when our definitions fall short of our children’s hunger to seek and understand the great mysteries of life.

 

Rebecca Pine supports individuals in the process of healing the emotional scars of trauma and loss. She is a writer, workshop facilitator, and international speaker. Rebecca is also the co-founder of The Breast and the Sea, a written and photographic project empowering breast cancer survivors. With a background as an herbalist and naturalist, she weaves her lifelong love of nature into every aspect of her work. Since her diagnosis with breast cancer in 2009, Rebecca has been passionate about supporting patients and survivors through the inner healing process.

 

© Rebecca Pine

Reflections on Self Love

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Photo © Shami Nadir

 

When I look at this photo, I am reminded of a wonderful day full of laughter and open-hearted sharing, connecting with old and new friends. We had breast cancer in common, and are all living without reconstruction. One of the highlights of the day was when Marianne Duquette Cuozzo painted our scars on our bare chests in the privacy of a NYC bathroom. She highlighted some aspects of our personal journeys, in the form of hearts, birds, swirls, and simple words. “This is cancer,” she wrote above some of our scars. On mine, I asked her to change the “is” to “was.

Acceptance

While walking together in Central Park, we considered the idea of finding a relatively quiet area to take a photo together showing the body art Marianne had painted on us. I’m not sure that there is much in the way of privacy in Central Park. We found a beautiful spot, and scoped out those passing by with the hopes of finding someone who would be willing to capture the moment for us and (hopefully!) not be put off by our request. I asked a woman who seemed like she might be a good fit, telling her our wish, and she consented. We pulled off our tops and posed together with a mixture of laughter, shyness, and pride. Once the photos were taken, the people around us began clapping. Completely surprised, all of our eyes filled with tears. It was a beautiful moment.  We hadn’t expected that boldly accepting our post breast cancer bodies would impact anyone other than ourselves.

This picture speaks to me of self love, as well as sisterly love.  In this intimate and carefree moment, we honored our bodies, our scars, and our stories.  Although our scars are part of who we are, we took a stand together, refusing to define ourselves by our scars alone.  Supporting one another, we recognized the common bonds between us, despite our differences.

Self Love

One of the greatest forms of love is self love. There is a practical aspect, essential for our longevity and well-being. Truly nurturing and caring for ourselves goes far beyond that, however, setting a precedence for greater personal satisfaction in life. Why is self love such a difficult concept to grasp? We—especially women— are all constantly fed messages that we must put the needs of others first. Subtly or overtly, we are told to make sacrifices, to do more, faster, and better. There is a tremendous amount of pressure to keep smiling, look great, and be of good cheer at all times and at all costs. This mentality is neither healthy nor sustainable. In reality, taking time out to care for ourselves helps us to feel happier and—ironically—function more efficiently.

What is self love?

Self love is something we can each define. It involves taking time to attend to our physical, mental, emotional, and spiritual needs, regardless of the external demands in our lives. We often put off self care, saying we will get to it later, imagining that it will take up far too much time to “indulge” in it now. In reality, this sort of personal attention is something that can take just a few minutes at a time. Self love is one of the most worthwhile investments we can make in life. If it hasn’t been your strong suit, don’t despair! The beauty about nurturing yourself is that you can start small, and can begin integrating little positive moments into your life at any time.

How can I show love for myself?

One of the most effective forms of self care is to push the pause button in life. Throughout the day, take a moment or two to stop whatever you are doing, and check in with yourself. Simply noticing how you are feeling physically and emotionally is enough to take the edge off any stress you might be experiencing. Give yourself permission to savor small, regular precious gifts such as a deep breath, a sip of water, stretching, noticing something beautiful around you, or something you are thankful for.  These simple acts are yours to claim whenever you choose.  Integrating any of these new options into your day takes some conscious effort and practice, but is well worth the effort!  May you allow yourself to relish these and other simple expressions of self love.  After all, it is only when our “cup” is filled that we can truly give to another.  Shine on!

 

Reflections on Going Flat: Whole Without Breasts

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Posted September 2017 by I’m Taking Charge

This week, as part of our September focus on going flat, we welcome Rebecca Pine. A talented writer and advocate for women with breast cancer, Rebecca shares her experience as a young mother who faced mastectomy. She also touches on the inspiration for The Breast and the Sea (follow the link or see the end of this article for details on this project).

 

It Took Me by Surprise

At least initially, breast cancer seemed to be happening to me. I was 33. I ate organic food, exercised regularly, and meditated. I had breastfed my son. It was a surprise that these things had not been enough to ward off all disease, even with a strong family history.

The standard of care seemed to be a mastectomy with reconstruction. After discovering that I also carry the BRCA1 gene, my doctors advised a double mastectomy. Almost everyone I spoke with had an opinion about my treatment and surgical options, and the overall consensus was, “of course you will reconstruct.” None of the surgical subtypes sat well with me, and I knew this was something that could not be infinitely postponed. Although I wasn’t ready to remove my unaffected breast, I ultimately went along with the commonly suggested plan of a tissue expander followed by a saline implant.

 

Contemplating Life Without Breasts

Although in reality, 58.4 % of women with breast cancer do not have reconstruction (Morrow et al., 2014), movies, commercials, and magazine advertisements continually remind us that we live in a society where virtually every female—whether two-breasted, one-breasted, no-breasted, or reconstructed—presents the appearance of the traditional feminine curves. It’s no surprise that I found it difficult to imagine what my body would look like without the shapely softness of my chest.

 

Newly married, my husband was incredibly supportive as I weighed the pros and cons of my options. While uncertain about my surgical choices, we both hoped to have another child. In an effort to envision how my body my body might look with each of the possible post-cancer outcomes, I sketched simple images of myself as a rounded stick figure. I did not know if I would be able to have a child after breast cancer, but held tightly to that hope.

A Natural Response

Drawings soon flooded my journal. Whether I depicted myself with two reconstructed breasts, a natural breast coupled with an implant, a solitary breast with one side flat, or entirely breastless, each sketch portrayed me with a belly round and full—the most prominent and important feature. In 2009, the Internet was not what it is today. Despite regular searches, I could not find many photographic examples of what post-breast cancer bodies looked like.

Going flat was not something I seriously considered at that time. Not because I didn’t know that it was an option. My mother, in fact, had chosen not to reconstruct when she went through breast cancer nine years before me. I had not heard of women in their 30s going flat before, however, and I had certainly not seen photographs. Despite my simple drawings, I had difficulty imagining myself in that way.

 

As someone who considers herself to be a “natural person,” striving to keep unpronounceable ingredients out of food, hair, and skin care products, having something foreign inside of my body made me uncomfortable. Although my surgeons did a great job, I immediately regretted having an implant. It was an artfully formed mound that resembled its pair well under clothing. Naked, however, it looked strange to me. Not at all, in my opinion, like its predecessor. It didn’t feel like breast tissue to the touch, and regardless of whether it was caressed gently or bumped, the sensation was uncomfortable. At times I would stare at my reflection in the bathroom mirror and allow myself to mourn my loss, but I often averted my gaze. I was alive and getting stronger. There was so much to be thankful for. I focused on these things as much as possible, but remained displeased with my appearance and choice.

 

A Beautiful Distraction

Time went by and I tried to make peace with the changes in my body. One day, I discovered that I was pregnant! The life stirring within my growing belly became going flatthe center of my attention, and I seldom focused on any dissatisfaction with my reconstruction. After the birth of our daughter, I was able to breastfeed with my remaining breast. My medical team advised me to have a prophylactic mastectomy as soon as I weaned. As this time drew near, I began researching surgical options once more.

 

Knowing I would not be satisfied with another implant, I looked into other possibilities. There had been some new surgical advances since my first mastectomy. Breast mounds could be made from grafted fat and muscle tissue from other areas of the body; not only abdomen, but now upper back, inner thigh, or buttocks could also be made into reconstructed breasts. The result would be softer, made from my own body tissue, but the operations were generally 12 hours or more, with a much longer recovery time. As an active, young mother, I cringed at the thought of going through such a major recovery period. My husband suggested not reconstructing, however this was not something I could imagine at first.

 

Worth a Thousand Words

One night I came across a single image on the Internet, and it literally changed my life. It was a picture of a young woman on a beach with her children. She was topless and breastless, carefree and smiling. When I saw this image, I immediately felt a sense of freedom. I weighed out the pros and cons of each option. When I considered reconstruction, I tightened up inside. The idea of going flat brought a sensation of ease. Recognizing this gave me the courage to charter my own course. Breast cancer was no longer happening to me. This time I was making the choices that felt right in my core. While I felt sorrowful about losing my other breast, I felt blessed to be able to remove it preventatively, drastically reducing my lifetime risk of recurrence or secondary breast cancer.

 

Regardless of surgical outcome, losing body parts that society deems the most feminine takes adjusting to. Going flat was the best surgical decision for me, as well as for our family. I was able to bounce back from the operation and resume my active lifestyle relatively quickly. If I had opted for microsurgery, it would have been considerably longer before I would have been able to pick up my young daughter, go running, or swim. I have since met many whose reconstruction failed due to infection or tissue rejection, requiring multiple operations and at times the necessity of removal.

 

Whole, In Spite of Physical Loss

Being flat feels like an authentic representation of who I am now. My external landscape has changed; in many ways I have changed inside as well. My scars tell a story of strength, marking the journey of evolution from who I once was to the woman that I am now. I have learned to listen more closely to the quiet sensation of ease I felt when I first considered not reconstructing, and it serves me in every aspect of my life. Today, I feel more whole and more comfortable in my own skin than I ever have. I do not wear prosthetics.

 

I am glad that there are many surgical possibilities available to all diagnosed with breast cancer, and that each person is able to make the choices that feel best suited to them. Educating those newly diagnosed about the option of going flat has been important to me. It is now becoming a more widely acknowledged outcome. I have chosen to be photographedtopless, as a way to help other breast cancer patients and survivors with their own process of decision-making and self-acceptance. May we all be guided by our inner compass, fiercely loving and accepting our decisions and ourselves exactly as we are.

 

Rebecca Pine was diagnosed with breast cancer in 2009. She is a writer and workshop facilitator for The Breast and the Sea, a written and photographic project that empowers those faced with breast cancer in the process of emotional healing through personal interviews, photographic witnessing, community support, and reflective, nature-based movement workshops. Rebecca offers additional guidance to those who wish to delve deeper into the process of inner healing through individual consultations and programs addressing self-acceptance, loss, body image, and reclaiming a sense of wholeness. She also blogs about breast cancer, family life, and the healing process. 

The Illuminating Moment When I Finally Knew How To Decorate My Breast Cast

Posted on April 13, 2017 by  – AwarenessThis is My Story

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Photo © Miana Jun

While preparing for my second mastectomy, I wanted to do something different to help with the emotional transition of losing my breast. This was to be a prophylactic surgery—I carry the BRCA-1 gene—and unlike my previous mastectomy, I had the gift of additional time to prepare for this loss. I was familiar with the idea of making plaster casts of the torso area to create a three-dimensional, life-sized memory piece. One of my friends had done this when she was pregnant, and decorated it beautifully afterward. Uncertain how to go about this process, I came across the Keep A Breast Foundation, which donates a plaster casting kit to anyone who is going through breast cancer or preventative surgery.

I didn’t have a vision for the outcome, but the idea of this process resonated with me.

When I went through breast cancer, I decided to have reconstruction, but I was never happy with the outcome—it neither looked, nor felt like a breast. I’m a natural sort of person and felt very uncomfortable having something foreign in my body. Although I was fairly symmetrical while wearing clothes, my natural breast looked completely different when undressed. While preparing for my second mastectomy, I decided to go flat, and have the implant removed. My ovaries also had to go, which would greatly reduce my estrogen load and my risk for ovarian cancer and breast cancer recurrence.

I had a gathering of dear friends in my home, a week before my scheduled surgical date. They made a special crown of roses for my hair—red to represent my years as a young woman and white to symbolize the transition I was about to undergo through surgical menopause. (To read more about the rite of passage celebration we shared, click here)

A few stayed overnight and helped me make the torso cast in the morning. I felt vulnerable, but nurtured, as they supported me through this. Once the plaster form was thoroughly dried, it made its way to the back of my closet. Although I was grateful for the opportunity, I wasn’t sure what to do with this unusual (and large!) memory piece. There it remained for several years. I didn’t often think about it.

Occasionally, I would take it out, look at it, and remember the way my body used to be when I still had one breast.

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Photo © Miana Jun

One day, as I was walking at the beach mulling over some things, I stopped to pick up some shells. It felt good to hold them in my hands, to notice their shapes and textures. I put several into my pocket. Suddenly, I felt compelled to gather many more shells, as the idea of decorating my plaster cast came to mind. The sea has played a large role in my breast cancer journey. It has always provided me with tremendous comfort and helped me to find meaning and understanding in life’s ups and downs.

Without consciously thinking about it, I began seeking out shells that were whole. Noting the gradient of brown, tan, black, and white, I started thinking about how the seashells in Florida are so much more colorful than the shells in New York. Then I became aware of the flaw in my thinking.

My life work is about empowering myself and others personally affected by breast cancer to embrace ourselves as whole and beautiful, exactly as we are.

I smiled, admitting my initial mistake, and decided to gather whichever shells I felt drawn to. I was reminded that beauty lies not in seeking “perfection,” but in seeking new eyes. All it took was a simple shift in perspective for me to recognize that there was beauty all around me, in everything that I could see. Especially when immersed in nature, I appreciate the beauty within me as well.

There was an empty trash bag in my pocket, as I generally gather garbage when I visit the sea. It’s one way of giving back for the many blessings I continually receive. Once my pockets were filled, I began using the bag to gather up shells. After a while, I came across the remnants of several helium balloons, plastic bags, and bottle caps. I added them to my collection, telling myself I could sort out the trash upon my return. Then it dawned on me that these objects, too, would be an important part of my art project. I vowed to use whatever I found and gathered at the sea.

At home, I carefully sorted my treasures on the kitchen table: shells of many colors, sizes, shapes, and textures, driftwood, a rusty battery, a pine cone, many plastic straws and bottles, balloons, rusty wire, yellow rope, a knife handle with the blade rusted off, glass shards, crab legs, and smooth stones. I made piles with similar things: scallops, swirling snail shells, drift wood, small smooth bits, broken with jagged edges, iridescent, and shells with many holes.

Next came the process of deciding what would go where. I loved the discovery involved in following my intuition, coupled with logic, as each piece built upon the previous, like a multi-layered puzzle. There was one large shell, covered in barnacles, and it seemed the perfect size and shape to place over the plaster imprint of my breast. A few other shells seemed to fit into place naturally. The project quickly took on a life of its own.

I decorated my plaster form at night, after my children were asleep and the house was quiet. Before heading to bed, I would condense my piles, cover everything with a sheet, and then dream about arranging shells and bits from the sea until I could set aside an hour or so again the next evening. I loved every aspect of creating this art project. Broken shells and trash found their places predominantly on my “cancer side,” where my right breast had been. Other areas became an overlapping collage of three-dimensional oceanic treasures.

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Photo © Rebecca Pine

 

Lots of Shells

Photo © Rebecca Pine

Partial Torso Cast

Photo © Rebecca Pine

Completed Torso Cast

Photo © Rebecca Pine

Over time, distinct objects nestled into their proper nooks. My breast cast took on a whole new meaning for me; it tells a story—my story. It whispers the tale of where I have been, who I am today, and the woman I am becoming. I recognize that it probably looks…well, interesting or unusual to those around me. Yet, to me it is a beautiful expression of self. It speaks of my journey toward health and the self-acceptance that I imagine is a lifelong process for most who have been through the physically altering experience of breast cancer.

Just as I found beauty in the shells—broken and unbroken—and even in the garbage, there is beauty in the life that I have led.

There have been ups and downs. I have been broken and unbroken. It has been a journey of remaking myself, with tools I have found and cultivated through my relationship with nature, writing, and self-reflection. In the midst of it all I am reminded that I am whole, exactly as I am. My concept of beauty is for me alone to define, to embrace, and to sculpt out of seaweed and trash and hopes and dreams. Making art is a wonderful way of transforming difficult experiences.

I’d like to thank the Keep A Breast Foundation for the gift of being able to create the lasting memory of my single-breasted torso, and the inner healing that sprouted from the work of decorating it. I strongly encourage any survivor, previvor, or breast cancer patient to request a free plaster casting kit. May you, too, find peace through the act of preserving the memory of your pre-surgical body, and healing through the process of transforming it into a work of personal art!

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Rebecca Pine was diagnosed with breast cancer in 2009. She is a writer and workshop facilitator for The Breast and the Sea, which she has co-founded with photographer, Miana Jun. The Breast and the Sea is a written and photographic project that empowers those faced with breast cancer in the process of emotional healing through personal interviews, photographic witnessing, community support, and reflective, nature-based movement workshops.

For more information, visit www.thebreastandthesea.com

© Rebecca Pine

Reflections on Pregnancy and Breast-feeding After Cancer

This was a guest blog post I wrote for Living Beyond Breast Cancer for their recent “Pregnancy After Breast Cancer: What you Need to Know” initiative, about having my daughter after breast cancer.

You can read the original post here

Rebecca Pine 8 months pregnant

I was diagnosed with breast cancer and learned that I carry the BRCA1 gene mutation a month before getting married and moving to a new state. I was 33, and strove to keep things as normal as possible for our newly blended family of five. My husband and I wanted to have another child. This newlywed dream was pushed aside as days became filled with countless doctors’ appointments and evenings of late-night research. I had six “second” opinions. All were urging me to have a double mastectomy. I couldn’t wrap my head around the concept of removing my unaffected breast at that time, and ended up deciding to have a unilateral mastectomy. Maintaining this seed of hope — that we would one day be able to conceive a child and that I would be able to breast-feed — gave me courage as I moved toward decisions about surgery and treatment options.

After the whirlwind of breast cancer subsided, my husband and I broached the question of pregnancy with my doctor. My medical team met with the tumor board to discuss my case. We were not sure what to expect. Having a baby post-breast cancer is a controversial topic, and the information I pored over at the library and online seemed inconclusive, if not bleak. I was discouraged. My breast cancer had been highly estrogen receptor-positive, and all of the young women I met through a support group had been told they could not or should not have more children.

Maintaining this seed of hope — that we would one day be able to conceive a child and that I would be able to breast-feed — gave me courage as I moved toward decisions about surgery and treatment options.

My husband and I were delighted to hear that recent studies appeared more favorable. My doctors were not aware of any clear data on the risk of BRCA mutation-positive survivors and pregnancy. We were advised of my high lifetime risk of breast and ovarian cancer, and told that if we wished to proceed we should waste no time. If all went well, the plan was to have a baby and breast-feed, then remove my remaining breast and ovaries afterward to further reduce the chances of additional hereditary cancers.

We weighed the risks against our hopes, and decided to try to have a baby. It was not long before I became pregnant, and our whole family was filled with excitement.  However, near the end of my first trimester, I miscarried. It was a difficult and uncertain time, which required physical and emotional healing before we were ready to try again.

When we were able to conceive again, my belly swelled — and along with it, my singular breast grew two cup sizes! Through a referral to the local “breast fairy,” (certified fitter of mastectomy products) I obtained a prosthetic, which could be slipped inside my bra whenever I felt the need to be symmetrical. Would you believe there is no such thing as a pregnancy mastectomy swimsuit? I learned that it’s possible to stitch “do it yourself” mastectomy pockets out of stretchy nylon fabric.

After 9 months of anxiously waiting, we were blessed with a baby girl. I was able to nurse her with my remaining breast. It was not easy at first. She did not take to breast-feeding naturally, as my son (born before my diagnosis) had. My daughter initially had difficulty latching on and suckling properly. It was discouraging. Thankfully, I was referred to a lactation consultant who guided me through the process of building milk supply and helped my little one and I learn to nurse more effectively.

There also appears to be no such thing as a mastectomy nursing bra. With no time to sew stretchy nylon pockets while juggling a newborn, I would tuck my breast form inside of my nursing bra. My little one would regularly pull it out, before I could even realize she was grabbing for it. Times like this call for a sense of humor … and it felt good to welcome the laughter.

I was able to nurse my daughter exclusively for 6-and-a-half months and regularly for 2 years. There was something about coming face-to-face with my own mortality that made these “ordinary miracles” of birth and breast-feeding especially extraordinary. I shed many tears of gratitude as I sat rocking my little one to sleep, knowing how truly blessed we were. I know that other survivors have had children after breast cancer, but these are not commonly told tales. I had heard of only two such women while I was doing my research, and it gave me such hope. I’m grateful that today there are resources such as LBBC, where women can learn about the latest data and read stories of others who have had these experiences before them.

© Rebecca Pine


Rebecca Pine was diagnosed with breast cancer in 2009. She is a writer and workshop facilitator for The Breast and the Sea, which she has co-founded with photographer Miana Jun. The Breast and the Sea is a written and photographic project that empowers those faced with breast cancer in the process of emotional healing through personal interviews, photographic witnessing, community support, and reflective, nature-based movement workshops. The above photos of Rebecca and her young daughter are from The Breast and the Sea. You can follow Rebecca’s blog at 4kids1breastreadyornot.

I am not a Skiier

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I am not a skier. My husband and our older children ski for the sense of adventure and thrill of the trails. I love being in nature and am a strong believer in positive family activities. Yet I find myself lurking behind on even the simplest trails, nervous about other skiers or snowboarders, and convinced that trees are going to jump out at me. I somehow muddled through years of ski vacations before I discovered snowshoeing, after our youngest daughter was born. It was the perfect fit for me. I was finally able to hike along in the snow, enjoying the outdoors and moving along at what could be a strenuous, yet safer-feeling speed.

I had just gotten my snowshoes secured and my little one bundled up in my carrier backpack—a small feat in and of itself—when she began saying, “milk, milk!” I settled down on the ground with my daughter in my arms and began to nurse. It was a beautiful, clear day. I noticed scattered people wearing pink. The numbers grew quickly: dozens and soon hundreds of men and women—mostly women—clad in all shades of pink. Many were wearing tutus, fluffy boas, or wild and crazy pink hats. I watched a particularly pink group of young women pose for a picture. One said, “say titties!” and they all tittered, echoing her words joyously. Their snowshoeing fundraiser had just ended.

I found myself longing to run right up and join them—after dashing into the nearest phone booth and pulling a pink tutu of my own out of thin air! I felt such a need to join in their camaraderie, their sisterhood. I was filled with gratitude for each and every one of them. I have one breast—and scars where the other one used to be, before my journey with breast cancer.

I go to the woods for solitude. To connect with the beauty of the land and to regain a sense of self. For renewal. Yet this day, amidst the stands of beech and hemlock trees, I was also filled with a strong and unexpected sense of community. I normally take the most solitary, least-trodden trail whenever I hike or snowshoe. On this day, however, I found myself drawn to follow the pink multitude that had gone before me. I pictured them all snowshoeing just ahead of me: their conversations and laughter faintly echoed in the crunch of my snowshoes upon the Earth.

In my county, there is a breast cancer fundraising walk every year by the beach. This was the fourth year that my family participated. It has been nearly four years since my cancer diagnosis. The breast cancer walk is always a strange time for me. Most people in my day-to-day life, outside of our family, don’t know that I am a survivor. It’s not that I am secretive about it. It just generally doesn’t come up. That’s one of the things about breast cancer—most of the world never sees your scars. Whether or not a woman chooses reconstruction, most women decide to be or at least appear to be symmetrical to the outside world … and so grows the assumption that we are. Once a year, at the breast cancer walk, I wear a pink t-shirt that says “survivor” on the back in big letters. I feel awkward wearing it. Some people in the crowd cheer for those with “survivor” shirts. It makes me shrink back, wanting to blend in. Yet on this day I wished to be bold.   Part of me yearned for a feeling of recognition; for a medal or a pink tutu of my own to behold.

The next day, while snowshoeing again, I continued thinking about the women in pink. As I meandered through trails of birch and maple, my thoughts drifted. Where do I fit in? Not with other young mothers, when thoughts of my mortality are often lurking in the back (and sometimes the foreground) of my mind. After losing one part of my body in order to preserve the longevity of the whole, my breast was replaced by a looming shadow of fear. Would the cancer return? Might it be fiercer than before, throwing my life in an even greater tailspin?

Yet, when I am among other survivors, I feel out of place too. I am often the youngest, dealing with different issues than middle-aged or older survivors deal with. Even in the company of survivors who are in my age bracket, I feel I remain an outsider. I am the only one I know that has had a child after recovery and been able to breastfeed. There is great uneasiness, even in the medical world, about such choices. Each person and situation is unique. There is no one right decision for all of us. I learned through research and advice from my medical team that there were risks involved with conceiving and carrying a child. I also discovered recent studies, which indicated that hormones released during pregnancy and lactation can actually help prevent breast cancer recurrence. My doctors knew how much we wanted another child. We were advised to conceive as soon as possible following my treatment. We were blessed with a healthy baby girl. Despite some early complications (unrelated to milk supply), I have been successfully and happily breast-feeding my daughter with one breast.

As I trekked through the woods, I thought about my future plan to remove my other breast once my daughter has weaned.   The BRCA-1 genetic mutation runs in my family—I am hereditarily predisposed to breast and ovarian cancer. In the quiet space around me, I considered my options: reconstruction with implants, my own transplanted tissue, or nothing—flat scars across my chest. I thought of my husband recently asking if we should have one more child…

Uncertain of my future, I continued my ascent across the mountain trail. My daughter was lulled to sleep by the rhythmic sway of my steps and crunch of the snow. Filled with gratitude, I paused to kiss her lightly on the head. She is my pink tutu. My silver lining.

 

© Rebecca Pine 2012

I Choose Hope…

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© Rebecca Pine

We must hold tight to hope. Today, more than ever. For, it is hope alone that will carry us through the darkest times. We cannot control the external circumstances in our lives. It is only ourselves that we can change.

The world around us is suffering deeply. In recent months, we have seen a tremendous outpouring of kindness and transmutation. There has also been a disappointing display of ignorance and deception. While we must certainly mourn our losses in our own way, let us not lose sight of hope. Hope is the gateway for tremendous courage.   It is that courage, which facilitates true change.

Let us remember that we are not alone. In our togetherness, we find strength—especially when we gather in circles of women, as women have been gathering since the beginning of time. The knowledge of the power of community is in our blood, and in our bones. I speak of women because there is something special that lies deep within each of us, that knows how to nurture and carry life. Our bodies hold the wisdom of how to labor and deliver our young. We have an innate sense to protect our children, and to band together to take a stand for what is right. When we quiet our minds, we have access to that same higher self that guided our bodies through the process of childbirth, illness, famine, or oppression—whatever difficulties each of us has had to endure. True power is a balance between the masculine and the feminine natures. May we strive to embrace, support, and accept one another each and every day.

Regardless of what happens next, I urge us all to choose compassion—even when we find ourselves face to face with hate. May we remember that we always have a choice about how we react. Let us take the time to pause, and to breathe. Hatred breeds more hatred. Violence triggers more violence. Shaming others only isolates both sides. Let’s look honestly at what the world needs most right now, and examine our choices with every new situation that presents itself. If we choose to lower ourselves to respond to negativity with negativity, we only contribute to the problem.

I believe the solution lies—much as it always has—with living our lives with integrity; striving to do the best we can with what we’ve got. When we focus on stretching, growth, and togetherness, we are met with a strength that far exceeds our own. That is not to say that this will always change our outer reality… society around us shifts at its own rate. We are most affective at altering the outside world through our own inner work. When we empower ourselves to rise up in the face of adversity and take a stand peacefully for what we know and believe in our hearts to be true, there is nothing that can take us down. Even in the face of violence or oppression, maintaining compassion and peace ensures that we cannot lose. Dignity and grace are allies that no one can take away from us.

When we rise up in this way, embracing our truth, we can only win. In uniting together, we create a powerful force of change that cannot ultimately be ignored. In choosing kindness over bitterness, we make the greatest difference. Responding to hatred with compassion and education leads to eventual understanding. May we keep our heads held high, continue to open our hearts and our hands to those around us, and carry on loving and nurturing our families. Only in holding tightly to love and to hope will we be victorious.

With love,

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© Rebecca Pine

May we all “Think Before we Pink!”

img_9987It’s October. Leaves are beginning to change color. It’s the season of hot apple cider, pumpkin spice lattés… and everything PINK! While there are certainly breast cancer survivors who embrace and enjoy the focus on “breast cancer awareness month,” there are many of us who dread it. Breast Cancer Action has coined the term “Pinktober,” and urges us all to “Think Before You Pink.”

FACT- Unless you are living alone in a cave somewhere, or on a solitary, drifting iceberg, there is no need for “breast cancer awareness.” We are aware about breast cancer. That’s not the issue.

FACT- Buying everything pink (including items with pink ribbon designs) does not guarantee that these companies will contribute to breast cancer organizations. It is often a gimmick that is used to attract sales. Read the fine print on labels and ask questions! Find out where the money goes from your purchase.

FACT- When these pink purchases actually do contribute a portion of their sales toward breast cancer organizations, it often goes to large companies that use most of their donated funds to go toward “awareness.” Many of these organizations raise large amounts of money through breast cancer walks, and most people have no idea that they are raising money for “awareness” and not a cure. If you want to make a difference, research how a company spends donated funds.

FACT-If you truly want to do something useful to help stamp out breast cancer once and for all, please make a donation to one of the few companies where 100% of your donation goes toward funding research for metastatic breast cancer—the only breast cancer that takes lives. 30% of all who are diagnosed with breast cancer become metastatic. There is no cure for metastatic disease. It is estimated that only 2% of all money raised for breast cancer research goes toward finding a cure for metastasis. Shocking as it is, most research funding is still earmarked for early stage breast cancer.

If you want to make a difference this October or any time of year, these are two organizations that I completely endorse:

Stand Up For Suzanne—Local Long Island, NY organization that funds cutting edge breast cancer research at Cold Spring Harbor Laboratories.  http://www.standupforsuzanne.org

About CSHL research: http://www.cshl.edu/Research/Breast-Cancer.html

Metavivor—An organization run almost entirely by those with stage IV, metastatic breast cancer patients, or “lifers.” They are dedicated to raising the important public awareness about living with metastatic breast cancer.  http://metavivor.org

About research Metavivor funds: http://www.metavivor.org/research/grants-awarded/

For more information on “Pinkwashing:”

http://bcaction.org/site-content/uploads/2012/02/2012-Think-Before-You-Pink-Toolkit.pdf

© Rebecca Pine