T Minus 1 Year

I never knew my paternal grandmother. She died at a young age, before I was born, of breast cancer. My aunt, my father’s sister, also had breast cancer when I was too young to remember much of what was happening. I remember whisperings among the family of a genetic mutation that my father carried, the same as his sister and mother, and that my siblings and I all had a 50/50 chance of having it as well.

BRCA1

BRCA1 is a genetic mutation. Without the mutation, the human body has certain defense mechanisms against rapid cell growth in the tissues of breasts and ovaries. My grandmother and aunt had a mutation, so they were missing this natural defense. BRCA1 is not a gene that causes cancer, but rather a lack of defense against it. The research and statistics vary, but it is generally accepted that a woman with the BRCA1 mutation is 65-85% likely to get breast cancer in her lifetime (as opposed to 12% of the general population), and she is 45-55% likely to get ovarian cancer (as opposed to 1.2% of the general population). Angelina Jolie, a famous BRCA1 carrier, chose to have a preventative bilateral prophylactic mastectomy. That is to say, she had her breasts removed before they could kill her.

On the phone, my Mom told me my older sister had opted to be tested, to see if she carried the mutation. My sister had tested positive. She was pretty upset about it, and wasn’t talking too much. What’s the big deal?, I thought. So you have it, knowledge is power, get ‘em chopped off and get an upgrade. My mom recommended I think about being tested as well. I didn’t need to think about it, I just went ahead and scheduled an appointment.

Getting Tested

A quick jab with a needle and it was all over. In a few days I would know. Five days later, the nurse wouldn’t give me the info on the phone. Instead, she set me up an appointment with an oncologist who was also a breast surgeon. Oh boy.

I arrived for my appointment, poised and braced. I was in the middle of everything with Kurt and I had become an expert at wearing my tough girl mask. I was unshakable. It was no big deal. I went to the appointment hungry, in one of my beat-my-body-into-submission-with-some-stupid-low-something-diet phases. I blasted loud you-can’t-mess-with-me ghetto rap in my car on the way. My phone pinged while I drove. I looked down to see a paragraph-long text from Kurt. He did not have the ten days clean from using meth I required before I would speak to him. The text was something about how self righteous I was for having this rule, and how my Al-Anon program and my boundary setting were “fucking our marriage”. It was going on nine months since his first relapse. and he still couldn’t get more than a few days clean at a time. Even still, I was hoping against hope he would pull himself together.

My Marriage

Although I had been living on my own for a few months already, I still held out hope for restoring the relationship with Kurt. He would go to a treatment program, then relapse and get kicked out. He would go to three meetings a day and then relapse. He would go to a sober living and then relapse and get kicked out. He would move in a sober roommate and go to outpatient treatment and then relapse and get kicked out. I wanted to wait it out. He wanted to get clean. He hated himself for using. I loved him. I was in love with him. But I was slowly dying inside. He was getting worse, not better. And I was clinging to less and less.

Every day, I prayed for him. We shared brief moments of reprieve in which he would collect a few weeks of sobriety and restore his rational brain. We could laugh or have a productive therapy session or make-up sex. One time, he even picked me up in a limo, wearing a suit from the 90’s, holding a dozen red roses. I’d let him back in and a few days later he would disappear, only to eventually resurface after going MIA . Each time, he returned a little meaner than the time before. He didn’t want to be using, but he wouldn’t stop. He refused to go to a long term inpatient program because he didn’t want to lose his job or apartment. He was constantly buying me gifts, sending me flowers, sending me postcards, and then relapsing. Then, he’d send me texts with name calling, blaming me for his using and refusing more treatment. Admittedly, I didn’t always handle these nasty bouts very well.

The Appointment

Bobbing my head to the ghetto rap, I deleted the text before his words could sting too much. I wrote him back, Call you later when you are ready to have a non-abusive adult conversation. On my way to find out how soon the cancer monster is coming for me, can’t talk now.

I parked my car and strode confidently to the elevator. I punched in the floor number I had been given for the appointment. The lights in the office building were too bright, the tiles too white and too shiny, the halls too echoey. I wore wedge heels with my designer yoga pants, trying to look put together. The heels clicked loudly as I searched for the clinic door. Stupid shoes. I had a sick feeling in the pit of my stomach. I should have brought something to eat. I was shown to a little room with two chairs and an examination table. I sat on the crinkly paper on the table and scrolled through Instagram while I waited for the doctor.

A doctor, a resident and a nurse walked in. The resident and the doctor sat in the chairs, the nurse stood. The room felt cramped. The doctor delivered the news, which did not shake me. The test result had come back positive: I carried the genetic mutation BRCA1, the same mutation that had killed my grandmother and taken my aunt’s breasts and scared the crap out of my sister. I did not blink. I did not move.

“Then I want it all out,” I blurted out, interrupting the doctor who was carefully choosing her words so as not to scare me.

“Let’s do this,” I continued with resolve, “chop of my boobs and make me better ones. Take out my ovaries, I don’t want babies anyway.”

My doctor paused. A beautiful woman in her 50’s with botoxed skin, wearing high heels under her white lab coat, this woman was not amused by my arrogance. Her tone shifted.

“Melanie, do have any idea what that even means?” Her eyes narrowed, and she didn’t wait for me to answer. She went on, “We are talking about scraping every bit of tissue from the inside of your breasts – from your underarms to your sternum, you will be disfigured. Then we have to go back in and stretch out what’s left with expanders over the course of two or three more surgeries. You will have scars from your armpits to your nipples, but you won’t have nipples anymore because we have to take those too. You will wear drains externally, as fluid runs out of the spot where your breasts used to be and pools in plastic bags that you will have to tuck into pockets sewn to the inside of a cardigan. The average woman goes through 4.5 surgeries, and her breasts never look as good as cosmetic implants because there is absolutely no natural breast tissue left to disguise them. Then there are the phantom pains that will haunt you for life as your body tries to make sense of what is missing. And you want your ovaries out, too? You are talking instant menopause. Your skin will wrinkle and sag, people will guess your age to be ten years older than you are. You will feel ten years older, because your body will ache with joint pain. Your sleep will suffer and you will have a huge drop in energy because of it. With joint pain, low energy and poor sleep, you can forget surfing, yoga and running at the level you currently enjoy, which likely means weight gain, which means more joint pain and more poor sleep and the nasty cycle gets worse.”

“What about hormone replacement?” I stood up to her, still playing tough girl...I’ve done my research, darn it!

“Right, pump your body full of the stuff that causes breast cancer in the first place? Melanie, I’m not trying to tell you what to do. I’m simply saying you are young, you just found out, you need to think this through a little. You mentioned some issues with your marriage. Now is not a good time to make big life decisions. I won’t operate on you now, even if you want it. The research shows that women are living just as long with their breasts intact. You just have to stay healthy and do the screenings. The ovarian cancer is a much scarier issue. We don’t have good screenings for it and it isn’t typically caught until it is very advanced. Your family history presents with issues around age forty-five. I recommend having children as soon as possible, and having your ovaries removed in ten years. In the meantime, try following some of the women on Instagram who’ve had these preventative procedures. What you want me to do will affect your entire life, as you will see. ”

I shut my mouth. I blinked several times, expecting tears. They didn’t come. I am too hard for tears. She said the nurse would go through a few more things with me and she turned to go. I heard her stilettos click on the cold, white tile floor toward the door. She opened the door a crack, then turned around.

“Hey,” she smiled for the first time, “just be happy, do things you love, live your life. Attitude goes a long way in prevention.”

I walked down the too-bright hall toward the elevator, wanting badly to cry, but my toughness wouldn’t allow me to crack. I pushed the button for the parking ramp. The elevator started to drop. I made a mental list of my options:

Remove body parts, not get cancer.
Wait and remove body parts once they become cancerous.
Fight like hell.

I got back in my car, turned off the ghetto rap. I sat in silence in the dark ramp. In my head, I chanted the words of the doctor, “Be happy, live your life, be happy, live your life, be happy, live your life.”

I started the engine, buckled my seatbelt, put the car in reverse but didn’t take my foot off the brake. I sat there, thinking. I put the car back in park. I dug my phone out of my purse. I texted Kurt.

I’m done. I’m out. You will have divorce papers by the end of the week.

After hitting send, I tapped the block button next to Kurt’s number in my phone. I turned up my ghetto rap, backed out and drove away, bopping my head.