Tag Archives: BRCA

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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Scar Tissue

anesthesia

The brain heals memories like scar tissue. Little pockets of betrayal, oozing pustules of heartbreak, shards of anger encapsulated, slowly covered up by a thin layer of skin and hardened there. If you’re lucky, if you massage the memory just a little but not too much, you’ll end up with a scar you can live with. Sometimes the memory is still too fresh, the membranes of remembrance barely fused together, leaving obvious traces still hot to the touch. Just a wrong look from the wrong person at the wrong time causes the seam of it to weep and there I go getting undone again.

I clutch my hand to my chest to steady myself and hope to hold back the fever. This one is too soon to even remember, a baby of a memory, threatening to break me open and take all my insides out with it. I can’t sing myself a lullaby of denial and go back to sleep. An unspoken part of me wishes I were an alcoholic, so maybe the bottle could keep this under wraps. But I’m not, so here it comes again. These words will undo me and maybe do me in.

The too soon time of which I speak, the one I hope to fade to memory is that of my surgery. My double mastectomy with immediate reconstruction that took place last July left wounds that are healing far faster on the outside than in. “Give it time,” a rational person will counsel. But a memory, just like a wound is breeched if you get too close and you rub it the wrong way. Thanks to mass media and Angelina Jolie, most people by now have heard of the BRCA gene mutation, which is the culprit behind hereditary breast cancer. Discovery of that lump in my left breast a year ago soon led to genetic testing, and the revelation that my mother too caries the BRCA 1 gene mutation. My soon to be 57 year old Mom, who has never had cancer, is about to undergo a prophylactic double mastectomy.

At this point, the universe is just messing with me. My mother’s surgery has been rescheduled twice now. The first time, I was at her house dog sitting and she was at the hospital about to meet with the anesthesiologist when the surgeon came in and canceled the whole thing. He sent her home that day because he said he had been up all night thinking about the complications that I had, and wanted to take an entirely different approach than what was planned for that day. The second time the surgery was rescheduled because my Mom had to have a non-elective surgery first, to remove a bile duct stone.  Each time the date is set, a countdown begins inside of me. Now a third date has been set, and on the outside I am steady and supportive, upbeat and positive when I speak with her. We talk about practical things, like button up shirts and rearranging her shelves so she doesn’t have to reach for things. Like me, she wears a good mask of efficiency and organization. Like me, is she scared shitless inside?

There is no way to really prepare yourself for a major surgery like this. Doctors and nurses will gloss over your concern with a gentle smile and tell you it won’t be that bad. (They tell you this because, A. They have to, and B. They just don’t know, and C. They want to comfort themselves and won’t you please stop asking the hard unanswerable questions.) You can read all the pamphlets, books, blogs, websites and forums you like but in the end the outcome is the same. You will be on the table facing the blade, your skin will be cut, nerves will be severed, tissue removed. You will be sewn back together. Anesthesia will make you groggy, grievously sick and later constipated. Drains will awkwardly protrude from under your arms and collect bloody fluid for you to measure, record and dump twice a day.

It is the searing pain that I am most afraid of… even afraid to tell of because it hurts to remember and write about. Waking up, with the anesthesia wearing off, even fully loaded with morphine, it was like a Mack truck smashed into my chest and I was left with a load of cement on top of me, pushing against each breath. The nurses were eager to get me out of bed to walk to the bathroom or stroll down the hall. I thought they were completely insane. It took so much effort and another morphine drip just to sit up and leverage myself against the bed. You can’t use your arms to push up off with or steady yourself. I remember teetering towards the bathroom and then came the challenge of wiping myself. The first week, I could take care of #1, but really couldn’t reach my backside. There goes privacy and dignity. Hopefully someone loves you enough to know you in this more than biblical sense.

I spent less than 22 hours at the hospital from admission to release. It seemed the sweet and doting night nurse had been replaced with a hard, cold and unfeeling morning nurse whose job it was to make my stay so unpleasant, that I would be eager to get in that wheelchair and scoot my agonized self out the door. It was the longest 45 minute car ride of my life, as I could feel every little bump and turn in spite of being padded with a fortress of pillows. My long, unpaved and potholed driveway had just received an emergency last minute load of gravel by the landscaping company my step-brother worked for. It was a crazy scramble to make happen on short notice, but after I threatened to walk up the ¼ mile driveway, everyone knew it had to get done.

I vomited every last bit of anesthesia out of my body the first night home. With nothing able to stay in my system, every wretch wracked my body with hot searing nerve pain, and I felt every bit of it. I remember my husband saying, “This is fucking insane. How could they send you home like this?” Those first few days are hazy to me, but my husband says that everyone was falling apart. Our four year old son had to be barricaded out of the bedroom and could only visit me with careful supervision. Everyone was worried and regressing. Both the cat and our son were shitting everywhere. My husband’s neck and back had seized up so bad, that I thought I would have to call my Mom to come stay with me because he was falling apart. I pray we will never have to live through something that hard again.

Think of how delectably sensitive your nipples are, then imagine having them cut out along with all the nerves and tender tissues below. Every time I was caught in a slight breeze, or touched a certain way, stabbing nerve pain would radiate from my phantom nipples. I was having phantom milk “let-down” feelings again, where a nursing mom feels her milk ducts release. It was a knife in the heart to have to hold tender memories of nursing my baby at a time like that.

Sleep could only happen in 3-4 hour windows while the narcotic pain relievers did their job. I would escape to dreamless sleep in a semi reclined position, my back and arms fully supported. My preferred method of side-sleeping was not possible until about two months later. I was sewn up tight and fragile and walked that way too, my shoulders sort of hunched up and frozen like a turtle caught without it’s shell. For about the first 3 weeks, I learned to manage with a regular 4 hour dosage of oxycodone or hydrocodone, then I was cut off. The doctor felt I could manage with Tylenol, which didn’t even come close to touching the pain. I had to learn to feel the pain in a whole new unmedicated way.

I suppose surgery is like childbirth in the way the body can go through such a shock, such profound pain, and find a way to heal, to bounce back in some respect. I didn’t have a beautiful bundle of joy to take home at the end of this excursion though. I was the helpless baby, crying and inconsolable, until I found that it hurt too much to cry, that I was too dehydrated to cry. No one could hug or hold me anyway.

I want to comfort my Mother. She has seen my nippleless breasts, and the meandering snake of a scar on my left, the horizontal crescent moon on my right. On a braver, happier day I have proclaimed that I am more comfortable in my skin than I have ever been since the day of the surgery and that she too will one day get to this place, with time and healing. We try to make light by rejoicing at the miracles of plastic surgery, to be able to have your boobs on your chest again, rather than lugging around saggy, tired “Nat-Geo” breasts that droop down towards your navel.

I just don’t want to face this surgery again. I want to save my Mother from the pain she will endure. A very small childish part of my brain thinks this is happening because of me, because of the lump that I found. I’m sure she had to face that same demon, to see her little girl suffer because of a genetic trait passed down. Really this is no fault of our own. Still, could someone please put me to sleep and wake me 6 months later? Logical brain knows that this is the best choice… the right choice. Those breasts that had nourished me as an infant, just might kill my mother. If she chose not to have surgery, intensive screening every 6 months might be the thing to kick that cancer gene into action.

Each time this is rescheduled, we play with time, we play the odds game. There was no one to save me from facing this surgery. The countdown continues. Tick… Tick… Tick…

we all want to be saved

Here is the crossroads. The new me in the old cocoon, on the doorstep of what’s next. Trying to reconcile my world view, tipped on its axis. I step forward + still want to scream when I’m faced with holier than thou proclamations of how you can be saved

if only I eat a certain way, fine tune my thoughts, wear the right oils, cleanse on the new moon. I was that person once extolling the Golden Nuggets of Holistic Health Care.

I want to scream, “These Things Will Not SAVE you!” There is no bullet proof vest made of Angel’s hairs and coated in your ability to control everything. Just let that thought go and keep moving on.

Now I am 2 weeks and a day beyond my last and final dose of chemo. This is the longest time I’ve had to let my cells populate and feel at home. -Growing into myself again. Everyday testing the new normal, resuming old habits -a green smoothie here, some yoga stretches there. Acupuncture & healthy foods have been my friends.

I want to make peace with a betrayal in my body. A tattoo for the outside and a balm of reassurance on the inside.

How do you reconcile when doing all the right things, you thought, had led you to awaken the same sleeping dragon?

and where do you go from here?

Emerging from the Chrysalis

Exactly one week ago at this time, I was fresh from surgery, in a world of pain and confusion. The last week has melded into one blurry, long day. I am through the first leg of the woods and can begin to make out the other side. Feels good to be in this place where I can begin to feel comfortable in my skin again. I had my first real shower today (which felt like winning the lottery!)

Though I am not ready to resume my normal activities and still need to spend the day resting, I am happy to report that my surgeon said I am healing very nicely. I have these awkward drains protruding from under my arms and they will stay in place for one more week. Not-doing has been a big test for me in all this. I’m learning to surrender more and more.

Gratefully, I have moved through the very anxiety ridden time of waiting for the surgery to actually happen. Much of my way of interpreting the world and incorporating experiences is through visuals. Prior to surgery I kept feeling like something was being taken from me, like I have been betrayed by my body and dealt an unfair punishment. A new image emerged just days before reporting to the OR. It was an image of me, as a beautiful and winged new self emerging from the incision across my breasts. I felt into this image and realized that the surgery was really an offering. I gave my breasts and in turn I get to live. Gratitude is the feeling that comes. As I write this, I no longer have cancer in my breast. I have eradicated my chances of another breast cancer in the future. How many before me had no options, but were only given an expiration date? My head humbly bows in gratitude.

 

butterfly

Thank you Grandma, I love you and I’m sorry

Dear Grandma Viola,

We never met. I am the oldest daughter of your youngest daughter. You passed away only a few years before I was born. My mother watched you be diagnosed with breast cancer at the age of 51, go through a barbaric mastectomy, which was the best they could do at the time I suppose. I understand that you passed away at 58, partly due to your fear of cancer and doctors and by the time you sought treatment it was too late. I’m sorry for your pain and your early departure. Mom told me years later that having seen you suffer with cancer at the age of 15, that she was so terrified of her breasts to the point that she begged her own doctor to remove hers. At that time, prophylactic mastectomies were unheard of. In hindsight, I understand that fear.

Great Grandma, Grandma, now me.

I don’t wish to follow the same path as my fore-mothers.

I will not let fear rule my outcome. I will be a warrior and wear our family crest upon my scars.

I am a 21st century woman with options of improved diagnosis and care for breast cancer survivors. The science that is available now is staggering and I am sure will be beyond our imaginings 50 years from now.

Angelina Jolie and countless other women who have had to make the difficult choice for a prophylactic mastectomy suffer much criticism and heat. I am here to say that unless you have sincerely walked that path, unless you have seen someone you love be ravished by cancer, you must refrain from making judgement about this very intense and personal decision. Trust me that this is not a fickle decision, like what kind of hair cut to get…

In my case, the surgery is not prophylactic, but a genuine action against the cancer growing in my breast. I will not let fear rule my outcome. I will meet this head on.