There is No “Out of the Woods”.

         I’ve written a lot about my breasts lately: on this blog, on my Instagram and on various blogs and websites. I’ve spoken about my breasts on different podcasts and have had private phone conversations with women who have reached out to me to discuss their breasts and more importantly, their health. I’ve been documenting the journey of having three breast surgeries in one year due to the BRCA2 gene mutation. I’m finally finished with them! I’m happy with the way that my body looks. More importantly, my breast cancer risk has decreased from a whopping 87% down to around 3-5%. The general population has around a 12% risk, so I should be breathing a little easier.

            The surgeries are done, but I find myself unable to close shop. I can’t stop talking about the journey because it’s never over. There is no “out of the woods” for me, or for many of us. There is a respite, where I’m in the woods but I’m not currently being attacked. I’m aware that my ovarian cancer risk is still high and that I’ll need to have my ovaries removed. I’ve been advised by my oncologist that having my ovaries removed at my age (32) would put me at risk of osteoporosis and even dementia. For now, I’ll continue with routine pelvic ultrasounds until I’m around 40 years old when it will be safer to have the last surgery. At that time, I’ll navigate a whole new journey: what it means to be a 40-year-old menopausal woman. How will I keep my bone density high? How will I combat hot flashes? Will I start forgetting important things? How will I keep my sex drive from fading? I can’t think about these things too much yet, but when the time comes I’m sure that Siri will provide great advice.

            The BRCA community tends to heavily emphasize the link between the gene mutation and breast, ovarian and prostate cancers, and rightfully so. But the little voice in my head that wakes me between 1am and 3am reminds me that I also have an elevated risk of skin cancer, stomach cancer, pancreatic cancer, esophageal cancer, cervical cancer and more, and that I can’t have all these things removed. I don’t have a plan of action with all of these, and that concerns me. I know exactly what I’m doing with my ovaries: I’m monitoring them and then I’m throwing them the fuck away. But how are we supposed to screen for everything else? Are we supposed to forget, or are we supposed to Google cancer symptoms every time we have a common cold? There has to be a middle ground.

            I need more guidance on this, but I sometimes need to forget. Sometimes I don’t want to think about cancer when I’m soaking in the warm rays at the ocean or eating an In N Out burger. The more aware of my risks I become, the more I feel that I need fresh air. So maybe I make a home for myself in the woods. I don’t really like camping and I gave up pretending to like things that I don’t. But I can make a place for myself here. It requires some extra work, of which I’m capable. It might require a lot of talking to people, living fully, doing brave and risky things, letting go of what other people think of my actions and it might require some therapy. I can live a very happy, colorful and probably very long life in an imaginary log cabin.

 

Photo Credit: Jeffrey Buckner www.DevilsBard.com

I got cut open so please keep sending me text messages.

I got cut open so please keep sending me text messages.

On Friday, 8/21, I had my final breast reconstruction surgery. It was my third surgery this year and my sixth surgery to date. This surgery involved:

1. My implants exchanged for a better, less ripply type.

2. Fat liposuctioned from my inner thighs and into my breasts to create an smoother, more natural look.

3. A tummy tuck with abdominal repair (ab muscles sewn back together and extra skin removed.

The first day after the surgery I was to be sent home immediately after waking up. I live on the third floor and with no elevator, so I decided to get a hotel for the first two nights as to avoid going up the stairs. I barely remember getting to the hotel. I don’t remember the employee who said he helped me to my room the first afternoon but I do remember falling asleep on the toilet while trying to pee. I think sometimes they send people home from the hospital a little too soon.

The first few days were a blur of room service orders, prescriptions and my friends making me laugh so hard that I’d start imagining funerals in my head because my abs hurt so much and I needed it to stop.

On Monday morning my mom drove me to my first post-op check up. The nurse took layers of cotton wrap off from my chest and stomach and showed me my breasts.

My new breasts look pretty. I haven’t thought that about them in a long time. They don’t ripple. I barely recognize them as my own. I started picturing the pretty girls that these breasts might belong to. I wanted to look longer but the nurse had to get back to work.

I’m happy with the placement of the scar on my stomach. It’s lower than I expected. It’s close to my C section scar which has already almost disappeared.

My inner thighs are massively bruised, which I expected. I notice no visible differences in the appearance of my legs in comparison to their appearance prior to liposuction, other than the bruises.

I’m walking around the house, getting myself food, receiving a lot of help and sleeping a lot. The pain is greater than all of the other surgeries and I notice myself breathing shallow because it hurts so much, but I am happy and I have no regrets.

I’m getting a lot of text messages and I love them. They keep me positive and connected to the outside world. I remember how they tend to fade over the course of 6 weeks and so I’m savoring each one.

I stood in my closet today and touched some articles of clothing that I want to wear but have never worn. I don’t have the energy to try anything on yet but I tried them on in my mind and I’m feeling exited about the future.

The magic of piece-of-shit toys.

My daughter thinks that this piece of shit is a magic ball. It causes her face to light up like it does when she blows dandelions and watches each puffy piece fly into the sky. She raises her eyebrows with wonder. I like that something so cheap can make her so happy because I like the way that, at 2 1/2 years old, she believes that she has everything she needs.

I don’t know at what age we lose our belief but I think it starts young. Around the age of 6, I started waking my parents up in the middle of the night to ask if we were poor and I don’t know why I did this, because we weren’t poor. When my parents took my brother and I to Target, I remember staring, admiring the Barbie dolls. My brother returned from a couple isles over, both hands full of potential plunder. My dad asked which Barbie I wanted and I told him I thought he should save money instead. When I received gifts as a child, I sometimes asked that the gift be returned because I was afraid that the gift giver was unable to control their own finances, and I assumed that I, an intelligent, financially-conservative eight-year-old, knew better than they did.

I don’t want my kids to worry about money like I still do from time to time (even when I have enough) but I also don’t want them to take anything for granted. I think the balance between the two is knowing how to enjoy piece of shit fuzzy balls made in China. Or maybe its in being grateful for what we have, tangible and intangible, and understanding the difference.

I’ve bought my kids toys before when I hadn’t planned to, simply because I was feeling the heavy weight of divorce-guilt and I wanted to see their faces light up, if even for a moment. I don’t think I’m the only parent who does that. We give in. We cave, because we crave that moment where everything looks like it’s okay. This can’t become a pattern: I can’t quench my fear of their disappointment by handing over my credit card, not because I can’t afford to (though I can’t), but because it’s counterproductive.

I hope my kids grow to know that struggle is okay. It’s part of the human experience and it doesn’t preclude us from experiencing joy. I want to give them the world but the truth is, I can’t make them happy. They get to decide if they’ll be happy or not. They’ll have plenty of food, shelter, shitty toys from China, but most importantly, they’ll have an abundance of people that love them. Maybe the very act of trying to prevent disappointment in our kids lives leads to their disappointment, their inability to cope once they fly out of the nest(s).

I hope that I get to live until I’m old enough to see that they’ve made it. Not that they are rich, or have secure jobs, but that they’re deeply happy, that they love themselves and that they love others. Until then I’ll be repeating my momtra (you know like mantra but for those of us with mom-guilt): “Each day I’m giving them my very best.”

People Getting Gas and Yelling.

I went to get gas on a Thursday morning. There was a long line of cars. It never bothers me because I like listening to music and if I really want to, I can pull out my phone to look at pictures of other people doing fun things.

I inched up space by space with the movement of each car until I was cut off by a woman in an SUV. I felt perturbed. Probably not enough to say something to her but I decided that I might give her the look. The look says, “fuck you, asshole,” but at the same time, it also says, “Who me? No, I didn’t say anything at all. I’m very clearly cool, calm and collected over here.”

Immediately other people started getting mad on my behalf. A Vons employee yelled that she wished that they were still allowed to turn off the pumps. A woman who was already pumping gas in front of me became livid that the SUV woman had wedged in the middle of us. Her hair was very white and curled on the top of her head like one of my grandmas used to wear her hair.

She walked over to the window of the SUV and started yelling things that I couldn’t hear. Then a woman from the car in front of her came over and started screaming at the grandma-woman. I thought about the “Lard Ass” scene from Stand By Me. Everyone was making everything worse. Four women were yelling at each other and everyone else was watching. I decided to pump my gas.

“She has a child in the car!” A woman in leggings yelled at Grandma. That was all that I heard and it made me feel angry because I take my children when I pump gas or go to the post office but I don’t use them to cut in lines. The screaming match ended. Grandma got in her car and left. The Vons employee yelled, “thank you!” to her, as if it was her battle to fight. No one acknowledged me as the person who was cut off in the first place and I wondered if some people just like to fight.

I was almost finished pumping my gas. SUV woman got out of car and then she got the child out. The child looked to be four but SUV woman picked her up and threw her over her shoulder like a rag doll. The girl frowned. I felt bad for the girl because I used to go limp like a rag doll and frown when someone would yell and I think that I might still.
She approached me.

“Do you know what she told me?” She asked.

“No,” I said.

“She told me to go back to my own country.”

I stopped rooting for Grandma. Grandma was gone already so there was no room for intelligent discussion but let’s be honest, there wouldn’t be any even if she was still present.

“I’m sorry,” I said. “That’s really hurtful.”

She looked defeated.

“But please don’t cut in line next time?” I asked.

“Okay,” she said.

I think maybe I didn’t say the right thing.

We got in our cars and left.

On Accepting the Things I Cannot Change, American Ninja Warrior and Holding My Tits on Waterslides.

I am a stubborn motherfucker. I am kind and gentle and forgive people easily but I want big things for myself, because I know that I am capable of them. I want to publish a book and travel the world and change people’s lives. Before I had my mastectomy, I wanted to compete on American Ninja Warrior. I wanted to do it because I like challenging myself, but primarily because I like the little snippets right before each Ninja competes where they interview the Ninja about the obstacles that they’ve overcome in their life. I watched the snippet about me in my head and I thought, “there will be people suffering from chronic pain who will see that it gets better. There will be women going through mastectomies who will see that they can be strong,” and so, I wanted to compete.

I had trained daily prior to my first surgery. I crushed battle ropes and improved my pull ups. I worked on agility and saw my body take shape like it never had before. This, I loved. I found the perfect ANW-style gym to train in and planned to go three days a week in addition to my training at LA Fitness. The idea of competing remained a possibility through the recovery of my mastectomy. Things moved slowly at first but I held on to belief. I felt fragile. Then within three months, I was back into weight lifting and ready to get strong again. Next came my second surgery – a breast lift with fat grafting. A breast lift is not a requirement of mastectomy reconstruction, but my surgeon deemed it beneficial (and of course I did not disagree) because I had breastfed my two children and gravity is a bitch, especially when you decide to get D cup knockers.  The fat grafting was done to smooth out the ripples in my breasts. I chose to have my implants placed over the muscle instead of under, to preserve my ability to lift heavy weights and to limit my pectoral restriction. There are pros and cons of each method but overall, I’m still happy with that decision. One of the cons of over the muscle implants is there can be visible ripples in the breasts since there is no fat to create a smooth look.

In May of 2018 when I had my second surgery, the surgeon liposuctioned my stomach and injected the fat into my breasts. The pain wasn’t severe, but I did have to endure weeks of people saying “I’ll donate some fat for you!”  I literally probably heard it a hundred times. I’m pretty sure I just smiled. But I probably smiled like little girl in the purple shirt who didn’t give a shit about going to Disneyland.

At the time of the second surgery, my plastic surgeon and I were already scheduling the third surgery. During the third surgery, I would have my implants exchanged for a newer type that don’t ripple as much, as well as a second round of fat grafting.

At the time of writing, I’m three months post-op from my second surgery and 15 days until my 3rd. I’m back to lifting heavy in the gym but I’m extremely cautious about things that I could fall and explode my implants from like water skiing or rock-climbing. I know I’m strong but I’ve lost the adventure. I feel fragile as fuck.

I know that it is possible to compete on American Ninja Warrior after a mastectomy (it has in fact happened), but I’ve gone through too much over this past year to risk injuring myself from a fall. I don’t like spending too much time in the realm of what other people deem to be realism, but I accept what I cannot change. I must protect the new goods at all costs.

I want this third surgery to be my last one. This is my new reality. I can’t even go down a waterslide without holding my tits in place. I find peace in knowing that there are still new hobbies to try and still new PRs to crush. I think it’s okay to change what you want sometimes as long as it is done from a place of self love. Right now by sights are on getting through this surgery, getting back into the gym when I can and then deciding what comes next when I get there.

 

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Death and Hard Choices and Fake Eyelashes.

I was in 2nd grade when my aunt Joy passed away. It wasn’t a pretty passing although she was a beautiful person. She was my first education on the concept of death. I remember hair loss and staples and feeling her cold, lifeless hands. I remember my mom’s tears and my aunt Barb asking me if I wanted to hold Joy’s hands longer but I didn’t want to because they were cold and I didn’t understand why. My teacher pulled me aside in class to read me a story about death. I don’t remember anything about the book other than there being fall leaves on every page and my teacher crying and I didn’t know why she was crying because she didn’t know my aunt Joy, but I understood that death makes everybody sad.

People continued to die as I continued to grow. I was a 18 when I underwent genetic testing and learned that I had an 87% lifetime risk of developing breast cancer and a 50% lifetime risk of developing ovarian cancer, as well as higher risks of skin, stomach, pancreatic and other cancers. I wondered who would hold my cold hands.

The genetic counselor told me there were options, that my life could be saved and so I began my routine screenings (physical exams, blood work, mammograms, pelvic ultrasounds and breast ultrasounds). I started to feel sick even though I didn’t have cancer. I am and have always been thankful to my mom for encouraging us to get genetic testing done because I know that it saved my life.

When I was a senior in high school my mom was diagnosed with an aggressive triple-negative breast cancer. I was rummaging through her closet after school one day right after she was diagnosed. She wasn’t home from work yet and I had a bad habit of testing out her lotions and perfumes without her permission. I found a red wig and I broke down sobbing. She was preparing herself for the hair loss that would inevitably come. I was angry because she had blonde hair, not red, so the wig was the wrong color because my mom wouldn’t look like my mom. I heard the garage door opening as I was holding the wig so I shoved it inside of her drawers, went in to my room before she could find me with the wig and then pretended to be upset about the upcoming AP tests that I didn’t give a shit about.

She went through endless rounds of chemotherapy, more surgeries than I could count and infections that caused her to knock on death’s doorstep more than once. She lost her hair and sometimes she wore the red wig but sometimes she went without any wig. I let go of my anger because I realized it was really just sadness and fear. She lost her energy and I started to see her bullshit smiles when she was in pain but wanted to protect me from sadness, just like my son can read the bullshit smiles on my face now. She fought for us and she lived to tell the stories. She still lives and she gets to see the smiles on her grandkids’ faces when she bakes them cakes shaped like bunny rabbits.

At the age of 31, I was finished having kids and I was ready to get the show on the road. I had my healthy, non-cancerous breast tissue removed (and replaced with implants) via preventative double mastectomy. I had years and numerous oncologist consultations to confirm that this was the right decision for me, so if you tell me that I should have just juiced more green vegetables in order to prevent cancer then we aren’t going to talk anymore.

My nipple-sparing double mastectomy with direct to implant over-the-muscle reconstruction occurred in January of 2018, followed by a breast lift and fat grafting (liposuctioned from my stomach) in May of 2018. Over-the-muscle reconstruction often causes noticeable rippling in the breasts, as there is no fat to create a smooth look, so fat grafting helps create a more natural look.

At the time of writing, I’m preparing for my third and final reconstruction surgery which will involve changing out my implants for a type that don’t ripple as much as well as a second round of fat grafting, a tummy tuck and abdominal repair (separated abdominal muscles sewn back together).

With each surgery, I sink into a temporary depression, a loneliness that even the brightest of texts doesn’t heal. I have to tell my children that I won’t be able to pick them up for another six to eight weeks, for the third time this year. I’m 3 months post-op at the time of writing and my two year old still wakes up each morning with her arms stretched out to me, asking, “mama, no boo boos?”.

I never doubt my decision as being the right choice but I struggle with the scars around my nipples and stomach. I know they’ll fade over time but I’m very impatient. For some time after my first surgery I felt like a damaged item. There really is no representation of women with scars on their breasts in movies, television, magazines or porn. I understand why but I still wish that the scars were on my ankles or my shoulders. I wonder when to bring this all up when I begin dating someone, and I hope that he’ll just read my Instagram or my blog instead so I never have to say another word to him about my breasts.

Shortly after my first surgery, I recognized myself to be in a mental state where I would benefit from trying something new. I couldn’t travel yet so I booked a boudoir photoshoot for myself. The idea of shooting images in lingerie with ripply breasts (and then not knowing what to do with the images) felt uncomfortable. I decided that I had become accustomed to physical discomfort and that some level of emotional discomfort would heal me.

The day I shot boudoir was one of my favorite days of 2018. I felt really beautiful and I realized that I had no reason to not feel that same level of confidence on a daily basis.

My cousin Renee is a model. I love watching her journey unfold as she travels to Los Angeles and New York and shoots for really cool companies. Renee encouraged me to do more photoshoots. She gave me some connections and tips and over the course of six months, I went from paying for photography to accepting some pretty awesome gigs, but more importantly I found a new side of myself and I began to smile more frequently.

Posing is physically demanding. It challenges me. My back muscles ache and my balance is thrown off. Channeling emotions into my face is difficult, and that’s why I like it. Plus I love having other people do my hair and makeup and put on fake eyelashes, since I don’t know how to put them on despite many attempts.

Through the past six months I’ve experienced more of myself than I have in the previous 31 1/2 years. I learned that sexy doesn’t end because you have scars or because you’re a mother. Beauty isn’t created by fitting into a mold. It stems from knowing who you are. I’ve heard that before. I’ve been told it but I did not drink it in until I experienced fucking things up, being sad, struggling and then learning how to create happiness.

I’m aware that a short term depression is coming. It’s already starting to creep in, reminding me of important dates and limitations. I’m also aware of how temporary it will be, and how strong I am. I hold my son’s hand as I walk him to his classroom, sometimes. Sometimes he’s too cool to hold my hand. When he lets me, I look down at his little hand, cupped in mine and I think about how warm our hands are. I think about how much life I have left and how I’m going to buy bunny rabbit-shaped cakes from the grocery store for his kids since I suck at baking. I decide I’m not going to waste any more of my time here. I’m going to start talking about messy things and failures and fears and also accomplishments and greatness, because I can and I should.

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