Tag Archives: Breast Cancer Survivor

Why I Posed Nude on National TV

The vision came to me in the shower. I saw myself standing naked at the mouth of an open cave in front of a reverse halo of blackness. Charise was there too, crouched down to take my picture. I remembered seeing her at that art opening last spring, and the open invitation to do a nude photo shoot. Maybe I should give her a call soon. Then, as these synchronicities tend to happen, she called me the very next day. She excitedly told me how she was just contacted by the Megyn Kelly Today show, and they wanted to feature her work, The Grace Project. She wanted to photograph me the very next week. Not only would I be posing topless for a photo shoot, but would be filmed showing my mastecomied chest— the after effects of breast cancer— to the entire world on NBC. To my own shock and disbelief, the word “yes” tumbled from my mouth!

I thought I would never, EVER pose topless on national TV. But I was never ever going to get breast cancer either, like Viola, the grandma I had never met.  She was ravaged by breast cancer and passed away at 58, about a year before I was born. I grew up hearing the myth, “Cancer often skips a generation,” but lived like I had fingers stuffed in my ears—la-la-la-la! Besides, I ate clean organic food, and I went to the gym. I was impervious to breast cancer until I found that lump in my breast when I was 36.

When my 3 year old son scampered over me, his little kick to the chest area drew my attention to this lump, the size of a nickel near my left areola. Even then I refused to think cancer. It must be a swollen lymph node from all the recent dental work, I thought. I was working as an office manager at a small chiropractic office at the time, and the doctor had just decided to drop our medical coverage a month before. It can’t be cancer. I can’t even go to the doctor right now.

Some divine timing took over because this happened to be 2014, the first year that enrollment in insurance marketplaces opened up, thanks to the Affordable Care Act. It would be another 5 months until I successfully navigated the goliath marketplace website, got a referral to a breast surgeon—and faced the fact that all the lymphatic massage and homeopathic medicine in the world wasn’t making this lump go away. In May of 2014 that illusion of cancer invincibility came crashing down with a diagnosis of an aggressive grade 3, stage 1, triple negative breast cancer.

I was the first woman in my line to benefit from the advances in genome mapping, and the first to test positive for the BRCA 1 gene mutation. Now I could make choices knowing that I had an 85% risk of cancer recurrence if I kept any breast tissue, and that I had an elevated risk of a few other cancers. We found out my mom was also BRCA 1+, and she was able to have a prophylactic surgery, hopefully sparing her of ever getting breast cancer.  She told me how at 15 years old, she was terrified of her breasts and begged her pediatrician to remove them, even after seeing her mother’s butchered chest. Here she was finally getting her wish at 58, the same age her mother had died.

Charise Isis is half way through her mission to photograph 800 women who have had breast cancer and mastectomies, because that is roughly how many women are diagnosed with breast cancer each day in the U.S. But I couldn’t even consider being photographed when my friend first told me about The Grace Project in August of 2014. I was home nursing my incisions and steeling myself for the chemo treatments ahead. I looked like a Frankenstein Barbie with these hard, immovable implants shoved under my pectoral muscles, fresh red scars forming where my nipples once were and snaking towards my armpits. I was scared and angry at the absurdity of cancer. Some of The Grace Project women were smiling. All of the women in Charise’s photos looked so brave and strong. Would I feel this way someday too?

It would be a lie to portray this as one simple surgery. I had a Port-a-Cath installed and later removed—this would deliver the chemo right into a major artery or vein for distribution throughout the body. Then there was the infection in my breast and the ultrasound guided needle extraction to relieve some pressure, nerve-wrackingly close to my silicone implant. There was the round of IVF with egg retrieval to harvest some of my eggs before the chemical tsunami hit. I also had an augmentation surgery to make my chest more symmetrical. Then right before my 39th birthday I had my ovaries removed to protect against ovarian cancer, another high BRCA 1 risk.

I desperately wanted to move on with my life, but even though my hair grew back and I was rebuilding strength and stamina, there was still this looming cloud of fear and uncertainty. With triple negative cancer, there is this sense of being on high alert for 5 years following a diagnosis. If it comes back, it might do so in a big way, showing up in my bones, brain or organs. But if I can make it to this magic 5 year mark, the statistics show my chances of getting cancer drop back on par with national averages.

Cancerversaries, those dates of diagnosis, surgeries, and first or last treatments are very triggering for a cancer survivor.  That’s why I decided to get my chest tattooed on the 2nd anniversary of that July 14th mastectomy. I didn’t go for nipple tattoos either. For me faux nipples were a mocking symbol of pain and loss. To take that date back in a powerful way, my tattoo artist, Miranda Lorberer, helped me create a gorgeous design that would be mine alone. We created a sprawling organic design inspired by the fine linear Indian Mehndi tattoos, that combines spirals and florals and peacock feathers together. As she worked the ink into my skin, she told me how her dad had died of breast cancer when she was in high school. I could feel his presence in the room that day.

I met Charise in person at an art opening last fall. Seeing her beautiful images on large pieces of silk was otherworldly, like skin printed on skin, soft, flowy and feminine. I was still not one of the women in her pictures, but now I had a secret under my shirt. After having my breasts brutalized by surgery, after being poked, prodded and clinicalized by doctors at countless appointments, they were finally mine again. I felt rare and exotic, and wanted to keep my breasts secreted away for the boudoir. I was not ready for the camera.

Then came the call about the Megyn Kelly show. For a brief moment I felt scared to death to be filmed and photographed nude. Then I remembered I had already looked death in the face, and something broke free in me. I coach people every day to make powerful choices, to take meaningful risks. This was not a time for me to hide out. This “yes” was a resounding answer from deep in my cells, calling me forward to some unknowable place. I thought of the woman facing down her surgery, or sitting home hating her surgical drains and icing her chest. Maybe she would see my picture and begin to imagine her place in this world beyond the inky black uncertainty of her cancer diagnosis. Maybe I could offer a little hope when the light is dim.

I prepared for the photo shoot that day with a long bath, thinking about the talking points I wanted to cover while the camera crew filmed us. I made a mental list as I shaved and moisturized. I wanted to mention CharityNavigator, to think beyond pink ephemera when donating money towards cancer causes, and avoid those foundations that absorb a majority of funds towards administrative costs. I wanted to mention that often metastatic cancer research is underfunded—only 2% of funds going towards metastatic research is such a meek sliver of hope on the fundraising level. I wanted to encourage people to support local oncology programs, and individuals living with cancer in their own communities. I hoped to mention my coaching work and my blog, Melissashealinghope.

It was clear the producer had a very specific moment in mind, and my talking points were moot. With the cameras on me I felt raw, exposed, and vulnerable. I wondered how I would look. Who would see this? What would people say? This powerlessness was eerily reminiscent of those weeks around my diagnosis, when my hopes about having a certain surgery or working with a specific doctor were dashed. I was seeking a second opinion at Sloan Kettering when I learned that nipple sparing surgery wasn’t an option for me, that the ducts met in the nipple and could leaving them could lead to a cancer recurrence. Ironic how I could only be shown topless on TV without these little pieces of flesh, my innocent nipples offensive to my body and to the viewing public.

Standing there with the lens focused on me, Charise asked me to close my eyes, to breathe and feel my feet on the ground. Her soothing voice told me to send grounding roots deep down underground, and the camera jitters began to ease. With my eyes on the horizon, the camera crew faded. I thought of Milyn, Champagne Joy, and Karen. Once here, and now gone, leaving inexplicable holes where there used to be life. I thought of my friends still in the grips of their diagnosis, held in this dance between worlds. The cool air on my skin brought me back to the moment, and I looked into the camera. I never want to forget what a miracle it is to be.

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The Period at the End

It is the end of an era. Next week I will say goodbye to my ovaries. What do I say about this? I could write a piece about the timing of the election, and how I better quickly get this over with before my health insurance is dismantled. I don’t know for sure, but this has surely played a role in bringing my next surgery to the forefront.

But here is the heart of it… I am reframing this from a story about loss, loss of fertility and youthful hormones, loss of yet another piece of my femininity to something else. This bilateral salpingo-oophorectomy will bring a gift of release. I will release worry and uncertainty about my high risk of ovarian cancer due to the BRCA 1 gene. I happily release the need for blood tests and ultrasounds every 6 months, and the news of new suspicious cysts forming. And as a consolation prize, I release my monthly cycle!

This last period was perfectly timed. I was walking the Avon39: The Walk to End Breast Cancer, a 2 day 39.9 mile trek all around New York City. After completing the first 26 miles on Saturday, I retired to Aunt Joyce’s apartment and realized that “my friend”, ol’ “Aunt Flo” had come for a visit. Why should I be surprised, having walked with close to 3000 women (and men), floating in a pink sea of estrogen. All of NYC was pink it seemed as the Susan Komen and American Cancer Society had also coordinated their fundraising walks for this same weekend. Of course there was the full supermoon emerging that night too, at its perigee, or coming closer than usual in its ellipse around the earth.  This was the most fitting scene as a farewell to my monthly cycle.

If you missed the exciting conclusion on social media, I’m happy to tell you that I did it! I walked all 39.9 miles, just weeks before my 39th birthday. I met amazing women, all with very touching stories to share about how Breast Cancer has impacted their lives or the lives of their loved ones. I kept finding these small groups of women to walk with, those of us with matching paces and strides, keeping each other going until the very end. Thanks to the months of preparatory conditioning and training, my only injury was a massive blister on my pinky toe on Sunday. I limped for the last 5 miles, and at each rest stop, there was a van driver taunting me with a free ride to the finish line. There was no stopping me though. I had come this far. My mantra was, “Walking is hard, chemo is harder. Walking is hard, but cancer is harder.” (Or I would start singing a song in my head like, “And I could walk 500 miles, and I could walk 500 more…” from the Proclaimers, or Destiny’s Child’s “I’m a survivor..”)

This walk was my way to give back. (A huge THANK YOU to all my generous supporters! Collectively we raised 7.6 million dollars in this NYC walk alone!) This walk was my dedication to my sisters and brothers still in the battle for their lives. This walk was my steep climb back to reclaiming my full pre-cancer strength and stamina. And this walk was a much needed focal point so I wasn’t only focused on surgery and more loss come November 2nd. I have been made stronger because of it and I know I will heal quicker and easier because of all that training.

My father asked me last year if I was finished writing this blog, now that the cancer was gone. The truth is that the healing journey continues. There was no way to neatly pack up and resume being who I was before all of this. In fact, I wouldn’t want to. In the weeks to come, I know I will feel some ups and downs as my body gets use to this new normal that surgical menopause will bring. I intend to share some of that, to offer my experience of what healing from this surgery is like, of how to support the body, and to chronicle the changes that occur. My heart is full of healing hopes, for myself and for all who need it. Thank you for following!

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Life Lessons from a Cancer Survivor: Avoid Burnout and Live a Purposeful Life

The hill is insurmountable. The laundry list of chores, tasks, to-dos –some mine, but mostly the doing is serving another’s needs, someone else’s mission. I grasp for air, for time to eat, to sleep, to play, to dream. Sound familiar? Before my cancer treatment ended, someone suggested to me that I be the person to write about, “How to Avoid Burnout after Cancer”. I’m not sure I can, as I’m still learning how. If you are looking for an easy step by step guide on how to get your life back on track, sorry. It is going to look completely different for everyone.

In the first few weeks after treatment ended, there was this thrill of returning to normalcy. Even though I still looked sickly, all bald, and pale and bloated, my white cell count was up and I could return to society without fear of falling seriously ill. All the parties missed, the skipped play dates with my son spent napping, the normal things like going grocery shopping or to the gym, all felt like novel privileges to return to.

There was also urgency behind my excitement because I felt that I had a year of my life to make up for. Breast Cancer had taken away my breasts, my fertility, my health and vitality, my hair, my physical beauty and femininity, and it had eaten up time. This mid-thirties time, when many of my friends were either having their second or third child or advancing in their careers, and I was coming face to face with my mortality, the fight for my life. Not wanting to sacrifice any more of myself or my time, I pushed myself to keep moving, to pick up the pieces.

Just a few months after treatment ended, I resumed the Life Coaching training program I had started exactly three weeks before learning I had breast cancer, in May of 2014. I rode the 5:45AM Adirondack Trailways bus from Woodstock to Port Authority for weekend long trainings every few weeks. Schlepping my suitcase to the hotel conference center, the sea of people made the air feel tangibly thick and heavy. My body weak and my brain, still discombobulated from the chemical assault, felt overwhelmingly confused that first time, so much that I almost turned around in the hotel lobby. Those neat roundabout doors wanted to propel me back to the bus station. The shame of being even a few minutes late, the self-pity and feeling that I was not ready for all this, threatened to send me home.

Then I met my CTI coaching colleagues and the incredible group leaders. As I immersed myself in this work, learning and practicing the tools of Co-Active coaching, I knew that I had found my calling. I knew by the end of that first weekend back that even if I were to ever relapse, or come face to face with another serious diagnosis of some sort, that I wanted to be doing this coaching work until the day that my body gives out.

One of the most transformative exercises involved going on a guided Inner Journey where we met with our Higher Selves, or “Captain,” as they called it, and from this we developed our own personal Life Purpose statements. My current Life Purpose statement goes something like this: “I am the spark that ignites creative fire and purposeful living in everyone I meet”. This brought a new level of urgency, this yearning to give back, partnering with other people to find purpose, meaning, joy and connection in their own lives. It was like being struck by lightning.

I began my private Life Coaching practice in earnest in July of 2015, mostly meeting new clients through word of mouth and by offering free private coaching sessions. In January of 2016 I began leading small group workshops and coaching demos. If you had told me the year prior, just as I was finishing my last chemo treatment that I would be leading coaching workshops in one year’s time, I would have thought you were out of your mind!

Here I am now, 14 months since treatment ended, about to crest the 2 year anniversary of my breast cancer diagnosis. While I am starting to feel like the nightmare is really over, the reality is that it has not been very easy getting my life back to a “New Normal”. Starting a new career, the launching of my own Life Coaching business, after a year of very little income and work is risky business. I had to have tremendous courage and the fortitude to diversify and take on additional freelance work. I am impassioned though, and committed to my vision. It feels much greater and larger than me, a force that needs to come through me.

Within weeks of my private practice launch, we learned that we had to move out of our apartment. To shake things up even further, my husband’s blood pressure went through the roof, landing him in the hospital for a series of tests and medication. We have a 5 year old, which requires a high level of energy on its own, but additionally, he is a young boy on the Autism Spectrum. While he is a joy and the light of our lives, this developmental disability brings a good deal of Red-Alert stress and requires a ton of patience, time and energy.

My story is not uniquely challenging. Change the names and the variables, and it is someone else’s life. This is a picture of what overcoming adversity looks like. It is not pretty. It is not easy. It is not always inspirational. How do you keep going? You put one foot in front of the other. If you are sad and depressed, look into that, feel it, but get help if it comes to the point where you are starting to drift off into the unreachable ocean of grief. If you are angry, get pissed. Use that fire to light you up. Take it to the gym, or into the woods and break sticks, throw rocks, scream your brains out. There will be a rush of endorphins, the purity from having that anger burned out of you, the sanctity of peace that follows. Write it out of you, write and write and write until your eyes burn from staring at the screen. Paint it and draw it and walk with it. Dare to dream again, however big or small. There is juiciness to squeeze from each precious day.

If you have come through cancer treatment or a major surgery or some other tremendous battle for your physical or mental health, Congratulations. Welcome to the New Normal. It may look and feel different tomorrow by imperceptible degrees. A month from now or 6 months or 2 years it may all be new terrain.

One of the lessons cancer taught was to listen to my body. I know I am overdoing it when the neuropathy gets bad in my fingers and toes. I know I need to slow down or take a nap, or decline an invitation. Another lesson is that I am steering the ship. I can say no, setting limits for what I am willing to do. By staying in the present moment, I am less prone to over committing and more likely to honor what my body is telling me. Lastly, I can ask for help. This was a real kick in the ass lesson for me, but a true game changer. When you allow others to help, they feel needed and included. It can be very empowering for them and nurturing for you.

My ReBirth Day

The most outwardly feminine part of myself, I took to the altar and offered up to the gods. I bargained for my life. When I could finally form words into a semblance of prayer, it was “Take my breasts, but let me live to see my boy grow into a man. Please!”

I was the first woman in my line to benefit from the advances in genome mapping, the first to test positive for the BRCA 1 gene mutation. The “Angelina Jolie gene” as people have come to think of it. Grandma had died before I was born, not long before I was conceived. She was ravaged by breast cancer and lost the battle at the age of 58, one year older than my Mother is now, and nearly the same age Mom learned that she too caries this ticking explosive in her coding. Viola was her name, and in 1973, the butchery done to her bore no resemblance to modern day reconstruction.

I grew up hearing, “Cancer often skips a generation,” and like prophecy I found that lump in my left breast at the age of 36. I told no one, but I was sure I would die. A curtain had dropped somewhere between diagnosis and the third opinion. When I tried to imagine life after surgery, there was just blackness, a void of absolute nothing. I wore my best poker face that morning in pre-op, chatting bravely for Mom and for my husband, Joey, for I could never let them consider this was a one way trip to the hospital. Inside I felt I had been led to slaughter.

I went in there and let them lop off and scrape away every last bit of breast tissue. Then like Frankenstein’s whore, implants were crammed in on top of freshly scraped ribs. They were sandwiched between pectoral muscles that were pried up like thick clams to hold the implants in place.  Surely going for aesthetic, as is a plastic surgeon’s job, his calculation for pain held little thought. No measure of research or soul search could prepare me for the searing reality of nerves severed, of nipples excised. My brain could not compute as all the signals flashed red, an angry train of phantom feelings, the demonic ghost baby sinking teeth for the well gone dry. In morphine addled delirium, I cried, “I told him I was fine with the B cup! He did whatever he wanted!” The swelling and tightness was more than I could manage, morphine and later oxycodone barely floating me through each crashing wave.

I am one year a survivor now. It has been one year since that July 15th double mastectomy which included removal of three sentinel lymph nodes, confirming the Triple Negative tumor had not breached the lymphatic system. I was “lucky” to have found it in an early and treatable Stage 1 the previous winter. Julian was using me as jungle gym, and I felt a stab of pain right over my heart when he climbed on my chest. I brushed it off for 2 or 3 months as just a swollen lymph gland. Although I am sure I have changed, surgery and the chemotherapy that followed could not stop the force of who I am.

If only there was a way to have reached through that inky black uncertainty, to have touched myself on the arm with a sisterly stroke of reassurance. I would go specifically to the day right before surgery, when I lost my shit and punched a hole through the bathroom wall, my rage parting drywall like soft cream cheese. I would sit on the edge of my bed that sleepless night before my first chemo treatment and show her the scar where the port used to be. I would let her run her fingers through my crazy thick hair when she is at her most bald, the eyebrows and eyelashes jumping ship too.

Slogging through each painful, exhausting day, there is a momentum forward that can only be appreciated from the top of the mountain. Now I pause on the adjacent peak, just one version of my future self that was unknowable to me while I marched straight into my terror and uncertainty. The view, which was obscured entirely at the start of this journey, stretches in panoramic possibility.

This June I resumed the Life Coach training program I had embarked on just 3 weeks before that shattering diagnosis. I wasn’t sure I had it in me to navigate New York City. I felt like I was barely formed and far too soft for such a hard world. Sweat poured from my face as I dragged that wheelie suitcase from Port Authority into the subway going the wrong direction. Pinched for time, I jumped into a cab, and soon we were gridlocked by a manhole fire, just before the cabbie clipped an SUV. While the two drivers screamed at each other, while I was feeling pathetic for getting lost and being late, I nearly gave up on my dream. After all I had been through, it was my deep shame at showing up late, at feeling like a complete farce that almost turned me around.

In spite of having the rug ripped out the year prior, the minute I sat back in that circle of classmates, and reconnected to this transformative work, I knew this was my path. My heart grew in resilience and pumped up fresh wisdom from a well of compassion previously unknown to me.  I found a direct line to the eternal part of myself that, although obscured, had pounded the drum to deliver me here. By the end of the seminar I had rededicated myself to this vision. I had fully emerged from the chrysalis and kicked off that remaining bit of identity of, “Melissa the cancer patient”.

Returning to the city last weekend, I chuckled to myself in realizing Port Authority is really only 5 blocks or so from the hotel where we meet. I remembered too that I have GPS capabilities on my phone to fall back on and began to relax in the stream of people flowing all around me, life in its varied colors, smells and dialects carrying me forward.

ReBirth Day