Balance Magazine - Fall 2003
Courage to Be Me
By Marly ( BoC Ms. October 2003)
Click, click. Click, click, click. That was the sound of the camera, almost a year ago, recording the sadness, empathy, hope, and joy in my eyes in with the broader shots of the two mastectomy scars misaligned across my chest. I had wanted a private photojournal, a kind of personal tribute, to the history these scars represented because, after being almost 3 years without my left breast and one and a half without the other, I was finally about to undertake a transformation through breast reconstruction.
It was late summer of 1998 when a throb intermittently ticked away at 11 o'clock on my left breast. I didn't understand ache's implication at that time, for it was the first notice of my breast cancer. Following a rapid succession of medical exams, ultrasound, and mammogram, a needle biopsy confirmed my wildest suspicion; breast cancer. How could this be happening? I was only 40.
From the outset I didn't feel angry about the diagnosis or frozen by a fear of dying (this swell of emotions would rise up months later when Iíd transitioned out of survival mode). Perhaps it was shock that was holding me in check but, instead, I felt a quiet wash of empathy for my body and its circumstance. I was able to negotiate each treatment step as if I was in a mild trance. First came the breast sparing lumpectomy surgery, where it was discovered that not all of the cancer was removed, and then the more radical step of a therapeutic mastectomy. Good-bye my dear left breast. Following this was a toxic FAC chemo, hair loss drama, and radiation fatigue. Not a pretty picture but, most thankfully, the treatments did the diligent work they were intended for.
Unfortunately things didnít stop at what should have been, after six months of radical treatments, a relief ending. On the recommendation of my medical team, an in-depth search of my family 'medical' pedigree told the sobering tale. The past two generations, on both my paternal and maternal sides, showed women between 30 and 55 who had been diagnosed with ovarian cancer. Almost all had died from the disease. Prior to diagnosis, I neither realized the importance of a familial cancer history, nor did I know that breast and ovarian cancers are first cousins.
The ovaries are the root source of estrogen hormones, which are also the favorite food of breast cancer. Armed with this inheritance news, I underwent genetic testing to search for either or, in a very few cases, both known breast cancer mutations; BRCA1 and BRCA2. If the test result was positive, the underscore of the finding this information was to allow myself time for preventative action before cancer had the opportunity to strike again.
Low and behold, a BRCA2 mutation was found in my DNA. What a shock. I honestly never expected to learn the reason for my cancer, since the 80% of women who are diagnosed are non-BRCA gene carriers. I learned that every cell in my body has an error in its DNA replicating storyline. This is the foundation of hereditary cancer. The good news is that not everyone with a derailed genetic code gets cancer. Out of a family of seven children, I am the only one who has so far been adversely impacted by this mutation. There is no answer to 'why me', it just 'is' so, on most days, that's my resolve to good living.
The enlightenment of having a BRCA2 status prompted me to take immediate preventative steps. I wanted that more assured possibility of living a longer and cancer free life. Despite this rational conclusion, I also knew it meant measures, which were almost draconian, and somewhat comparable to the medical weaponry used to fight the cancer.
The first treatment would involve a rapid reduction of the estrogen hormones, which our female bodies produce in huge surplus quantities. The surgery used to block their production is called an oophorectomy. It involves removal of both ovaries, and renders one sterile. The next stage of treatment was taking off the last and healthy breast, so cancer would not have a chance to latch onto another warm and nurturing mammary gland. The time between these two prophylactic surgeries was a year and a half. Ovaries first, and then the remaining breast.
The reason for this was that, until my genetic status was proved positive, there was no sound basis to remove a healthy breast and put me at great risk for, what others adamantly thought would be a great mental disturbance from additional breast loss. Even during my initial therapeutic mastectomy, I wanted the second breast taken as well. Intuitively, I didnít want to be vulnerable to another breast cancer diagnosis. I suspect it was perceived by others as a temporary anxiety, and then became convinced by my otherwise extraordinary medical team that I should keep the second breast. The great concern and urgency perceived by the doctors was the hormone influx from my ovaries.
In retrospect, it's extraordinary what my real breasts meant to me as a woman. Sometimes I found my two rather annoying (especially their getting in the way during sports!) and when they lost their youthful perkiness and really began to waddle around. Mostly though, I found them to be sensual, feminine, and lovely. And, they were mine. I miss them. Nonetheless, of all the breast cancer related treatments, it was the ovary loss that I found most difficult and which broke my, now mended, heart.
I had streams of tears running down my face all the way into the surgery room. Before my breast cancer diagnosis, Iíd still hoped and believed that I still had a couple of years to find that great guy and have a child or two of our own together. That dream was over and irreversible. It surprised me, and I felt quite lost and alone because of all the attention and empathy others conveyed about my breast loss and barely any acknowledgement, other than practical, over my ovary loss. I suspect it is because most women diagnosed with breast cancer are over 55 and beyond and are already post-menopausal. For a younger woman to undergo surgical and instant menopause is an enormous system shock. From the physiological level to the emotional one. Iíve concluded that this maternal loss is what gave birth to my bettered peace-of-mind from better my odds of living longer and cancer-free.
From the outset, I'd pretty much decided I would not undergo breast reconstruction. The reason for this was several-fold. I assumed the exorbitant $30,000+ cost would be my responsibility (but, in fact, insurance covers this as I later learned) and, more than anything, I was terrified by stories about numbing silicone leakage and bacteria lining broken saline pouches. It wasnít until I was searching to unite with others who had chosen not to reconstruct that I actually found myself, unknowingly heading onto the road to reconstruction.
I completed a websearch and found an extraordinary community of women across North America who were not only young hereditary breast cancer survivors but also who were opting to have both healthy breasts and, oftentimes, both ovaries removed. They too where wanting to save themselves from an early death many had already witnessed their mothers, grandmothers, aunts, and even sisters in some cases, had endured. This life-saving web-community is called FORCE; Facing Our Risk of Cancer Empowered and is reachable at www.facingourrisk.org .
I received enormous support about my decision to go unreconstructed, from these women, and was quite content with my two perky prostheses (falsies!) for many months. There was a particular bond I found with a group of women, I called the June 2001 Ya Ya Sisterhood, who were all having their healthy breasts removed around the same time as mine, only they were all having immediate reconstruction. In following their trials and mostly tribulations, I found myself longing for what they had. Iím still not certain as to exactly what that was. I just know it had something to do with a feeling of femininity and sexuality that ones female breasts, no matter how small, can bring.
To apprise what I thought was a passing desire to reconstruct, I decided to visit the plastic surgeon I'd visited three years before, during consultation shortly before my initial mastectomy. I was astounded to learn the waiting time for a non-urgent reconstruction case was eight months to a year and the actually surgery date was another year to year and a half wait.
I knew she was the best reconstructing physician in town but I decided that a 'good' one would be fine. It was then that I stumbled across Dr. Andrea Pusic, who has literally changed my mindset for the even more positive. Originally from Canada, she had trained and worked with 'one of the best' at Sloan Kettering in NYC. She was newly transplanted to the Westcoast and was still in the process of building her practice when I walked in. Being a researcher a heart, she apprised me of the real, and largely safe, truth behind the silicone implant hype, the changes that have come about in breast reconstruction technology, and particularly with the implants themselves. What I expected, going in to see her was reassurance that I was better off for choosing not to reconstruct. Instead, I walked out of her office ready, willing and available to start reconstruction immediately.
Deep down, I know it was the latter resolve I was looking and hoping for. The hard facts to put my fears to rest. Itís been six months since the reconstruction first began and soon, with the final touches to the reconstructed nipples and tattooing of the areolas (yes, thatís part of what happens too, and they look so real!), and my new B-cups will be complete. Iíve had such positive comments from other reconstructees about how amazingly perfect they look, and even my oncologist recently remarked they were the best new set she had ever seen. With that, what more could a girl ask for?
Once I chose to reconstruct, I didnít want to just remove all recollection of the battle scars on my chest. I wanted to move on but also never forget how much my body has endured and how stalwart it has been through the trials of cancer. Iíd been so ìokî with my flat and double-scarred chest and, in an odd way, considered it sacred ground. A few weeks before the scheduled surgery, I attended an international breast cancer conference and met the publisher of a unique calendar, 'Breast of Canada' . It honors the female breast and promotes its health by sending a portion of the calendarís proceeds to the Canadian Breast Cancer Network for community awareness raising programs. It made me think of doing a private photoshoot in honor of my non-reconstructed self.
A visit to a nearby coffee shop put me in touch with a local, albeit Australian imported, children's photographer named Kelley Yandle, whose work graced the shop walls that week. I loved the freshness, ease, and love they conveyed and also thought she would surely have the sensitivity necessary to do the shoot. It was a poignant photo session and I was so grateful for the opportunity to establish a kind of emotional closure during that time frame.
In ancient Greek folklore, an Amazon woman was a hunter and warrior who, for the purposes of better survival, had one breast removed in order to shoot more accurately with a bow and arrow.Idecidedthatthebestwaytohonourmybreast-lesschestwastoshowthecamera what it was like to aim and shoot for my life. So, draped with a white gauze cloth and donning a bow and arrow, I took on the stance of an Amazon.
Never ever did I imagine I would feel this good, this much better, about having breasts again. Thanks to my community of loved ones here at home, my surgeon Andrea, Kelley, Sue and the deaer women I call friends aat FORCE, I'm certain I would have been happy without the breast make-over but, honestly, I am thrilled with what I have now. Sometimes, despite their more solid and permanently perky state, I even forget that they' re not my real ones. Real or not, me and my breasts have come so far together. I have the pictures to prove it.