How to Thrive Following a Devastating Diagnosis: Learning I Was a BRCA1 carrier

My entire life I have fought off this looming certainty that only the worst hands of cards would be dealt to me at every occurrence of chance that would present itself forever. Only recently have I been able to see good in the bad and pride myself on the positive, hardworking attitude I am now usually able to maintain through out the obstacles of which my shitty hand of cards would display itself every time. Even as I bartend myself through college I have always tried to enforce the power of positive thinking and karma to my colleagues when shorted on a tip or belittled by a rude guest- that everything will come full circle. To trust me, I know.

Some things are easier said than done.

This outlook towards life and how I more recently try to believe it works did not come easy. In fact if you asked me about my life this same time last year I probably would have spilled my heart out to you about my deadbeat dad who couldn’t give two fucks about me and spends most of his life in and out of jail and homeless shelters, my mother who would refuse to admit my childhood was anything but perfect and could not understand what I could possibly resent her for, my oldest brother who brought four beautiful, loving, unbelievably strong children into this world then returned to the needle abandoning them into foster care, my recently clean and sober ex who finally got his shit together after years of emotional and physical abuse then realized he didn’t need me anymore, the unbearable exhaustion of working full time in a bar in Boston where I was overworked and unappreciated on top of being a full time college student, or how all of it was really fucking awful to deal with but having to do it all alone was even harder. I was depressed, I was paranoid, I was gaining tons of weight, and I remember crying myself to sleep trying to think of at least one person I knew that I completely trusted.

There was no one.

No one besides a little old lady who waited at the window of her nursing home all day every day for me to come visit- and I promise you that I didn’t do it nearly enough. My grandmother was the only person I could think of whom never thought anything less than the world of me. The one person who always believed I would be something great and that I was something great. The only person who has ever loved me unconditionally from the second I was born and could never even think of being upset with me. And that was it- just my Grammy. The only thing keeping me from a deep, ugly depression was how busy I was. I had to keep my grades up and I had to work to survive. Failing or asking for help was just not an option.

Fast forward to a year later and I am the absolute happiest I have ever been since I can remember. I also feel the most put together that I have felt in a long time. So what happened? I did not take some magic pill or win the lottery and I never found my pair of magic glass slippers.

My grandmother died.

My grandmother died and I had no idea that my heart could hurt as much as it did. I was confused. I had so many questions. Did she know all of her loved ones were there as she passed? Did she do everything she wanted to with her life? Did she feel loved? Did we do everything we could to make her comfortable and happy? I was mad. I didn’t visit her enough. I should have taken her out of the home before she died. I should have told her how much she really meant to me. And after weeks of grieving, guilt, and heartache it came to me.

Life is too short.

Life is too short to be anything but happy. I don’t want to die with regrets. I want to leave a legacy behind. I want to see the world and understand people from all of the world’s cultures. I want people to hear stories about me and how strong I was despite my hardships and how much good I did for others. I want to make others happy. I want to believe that every person has goodness in them and I want to help people find that goodness in themselves. I want to help people figure out how rewarding it feels to make others happy. I want to take everyone’s bad day and make it better, because you never know when something is going to take your life away. I started holding doors for people, complimenting strangers, and offering help and happiness in as many forms as I could and I began to learn a lot about life. The first thing I realized was that I was young and stupid and that I was wrong about everything I had previously thought about life up until this very point. If there is anything I can preach about how to live a happier, more fulfilling life it is this:

1. Faults are beautiful and mistakes are OK. Admit when you’re wrong and ask for help. People actually appreciate the honesty and the vulnerability.
2. You cannot change the past. Forgive when appropriate and move forward or stay stuck in the past and forever miserable.
3. You cannot be the best at everything and you shouldn’t try to be.

            I no longer wake up every morning hoping that my father or brother will smarten up and learn to be adults. I do not dwell on how they will never experience a life of happiness or know anything about the world or its people beyond the slums of the North shore. I am thankful they are alive. I am thankful for the most amazing nieces and nephew my brother has given me that hold my heart in their hands. I do not resent my mother. She fought hard and by herself through bouts of cancer, disability, and no help financially from her loser ex-husbands. I look up to her and how much she was able to achieve as a single parent and I am thankful everyday for the amazingly understanding, loving best friend I have found in her. I waited for my boyfriend to heal from his addiction, anger, and depression and have been thanked by him with appreciation, patience, and a love so strong I didn’t know it could exist. I asked for financial help for school and received it from my grandmother. I am thankful. I no longer pity myself for the hardships I have endured but admire myself for not letting it break me. I am lucky. Lucky that I was able to beat depression and come out on top- stronger and more confidant. I am beautiful and healthy, and for that I am lucky.

I took every negative in my life and realized they were all just positives. I built stronger relationships with family members and friends. I was learning to trust. I was learning to not be disappointed in people who didn’t see things as I did. I was learning to understand different forms of love and hurt. I was learning that I was lucky in life to have endured such hardships that had sculpted me into the young woman I was so proud to be. I was learning to let go and let myself be happy and I was learning that I deserved this kind of life that I had worked so hard for- a life full of love and happiness and adventure.   I was close to a degree, thriving in love and happiness and in growth.

That’s when it happened.

            A few days before my 25^th birthday I got the call. I was sitting in my boyfriend’s car waiting for him to come out of the supply house. My doctor had called to tell me that my blood had tested positive for a genetic mutation that makes me prone to cancer.

Cancer.

            Excuse my language but what in the actual fucking fuck?! How did this happen to me? Why did this happen to me? When am I ever going to catch a break? My genetic mutation felt like a death sentence. I heard one word and one word only- cancer. I watched my mother survive three tumors and countless surgeries. I watched her frail and sick from cancer therapy try to live a normal life and fail miserably. I promised myself years ago I would never let sickness happen to me like it happened to my mother. I watched different prescription medicines dictate who my mother was and when. I watched her lock herself in her room for months at a time with all the shades pulled tight. I watched her miss out on everything from one disability to the next and I assured myself I would NEVER allow such a lifestyle for my own life. I was too busy appreciating all the good that was happening around me to even remember I had chosen to have the blood test done.

And there I was.

            With just one phone call I was back to my kicking and screaming pity party. I read articles about Angelina Jolie being diagnosed with the same hereditary disease and opting for a double mastectomy and hysterectomy to save her life.  To be able to watch her children grow. I figured the only way I was going to beat this thing was to cave in and do the same- to live the life full of operating rooms and doctors appointments I promised myself I would never live. I was absolutely devastated and have never felt so defeated as I did in the car that day.

The next day my boyfriend took me to talk to my doctor about my results. She presented me with a thick folder full of papers containing big words I couldn’t even sound out, tons of red font, and the words “high risk” scattered all over the pages. She assured me I had several different options I could explore and gave me some referrals to doctors she recommended. Her secretary offered to book me an appointment with the breast specialist at Mass General and when she asked which days were good for me I looked to my boyfriend for an answer since my car was stuck in an auto body shop. He stood up and exclaimed that for this, he could take me anywhere at anytime.

I am lucky.

It was the first time I remembered this since I received the call about my hereditary cancer.

I spent the morning of my 25^th birthday with Dr. Martini in the cancer center of Mass General in Danvers. He explained to me a little bit about my options and suggested I start with routine MRI’s and mammograms to monitor my health as I explore different paths other women have chosen to take after being diagnosed with the same mutation. I scheduled an MRI and began to do my research.

I got nowhere.

I read about women who opted for the surgeries and received great reconstruction. I read about women who opted for the surgeries but had horrible complications with their reconstruction. I read about women who were monitored closely only to undergo severe life changing cancer treatments in the end. I read about single women with the mutation and I read about married women who wanted families with the mutation. I read information that convinced me I would immediately have my breasts, ovaries, and tubes removed before anything could harm me and then I read articles that assured me I didn’t want to do any of that and to just take my chances. But something was missing. All the women I read about were in there 30’s and 40’s, some even older. I felt like I was the only 25 year old in the world with this disease.

I felt so alone.

            I have an amazing boyfriend. I have truly great friends. I have an extremely supportive family. But I hated each and any one of them who tried to pretend like they could understand what I was going through. I had a disorder I didn’t understand that was forcing me to think about things no one should have to worry about at my age. If I wanted to have the preventative surgeries I had to think about a family. Do I want children? Should I freeze eggs? Should I ask my boyfriend if he wants kids? I would want to breastfeed. So should I forget the surgeries? But I never wanted any kids. Have the surgeries. But you’re only 25, how do you know that you won’t want kids later in life? Would you be willing to adopt? What if I was never even going to get cancer? It would be cool to have bigger tits and no periods. But that could screw up your bone density and hormonal changes and come with severe risks.

What should I do?

I found myself asking these same questions over and over again every day. I hated the MRIs. I hated the feeling of having to withstand these awful tests that monitored me so closely just to have to undergo life-changing treatments once they caught something. I didn’t know enough about the surgeries and their risks or the disease and its risks to think through my options thoroughly enough. I wanted more information but couldn’t understand any of the medical lingoes I was reading in all the articles, essays, and databases to grasp any of it. I was unable to locate anyone else in my age bracket to talk to and I had no idea what I was going to do when I got a second call from Dr. Martini.

There was an area of concern found in my MRI.

My doctor wanted to do an ultrasound of the area in my right breast that raised concern.

Another death sentence.

After my ultrasound my doctors thought it best to have the mass removed. They were unsure of what it was and with my family history and recent diagnosis they didn’t want to take any chances. They couldn’t find any openings from the mass to my skin or any other evidence that this thing was definitely benign. So I set a date for surgery. I assured my boyfriend, all my friends and family that it would be nothing. It was a small surgery, they would tell me it was a nipple pimple or something hilarious and I’d be back to going my preventative route. The truth was I was scared shitless. I had never had surgery or been put to sleep for anything. I was worried about the pain. I was worried about waking up with a knife halfway through my tit or being that one person out of a million that dies during some routine procedure. I was fucking terrified. What if they told me I was too late? What if cancer was already ripping its way through my body?

When the day came my boyfriend accompanied me and waited until they took me downstairs for the needle localization to leave. My mass was located directly under my nipple making everything more painful since it’s such a highly sensitive area. They numbed me up and inserted a needle two and a half inches into the right of my breast leaving behind a small wire directing the doctor where to operate. I remember looking down and seeing the wire protruding from my bloody breast and biting my bottom lip in pain. They gave me some medicine to relax and took me upstairs to wait my turn for surgery.

When I woke up my boyfriend was there and I was elated to see his face. He didn’t even need to say a word to comfort me, he was there and that was enough. I had to take some medicine and decided pizza was what I wanted to fill my belly with so we went to Bertucci’s. I was so happy to be out of surgery and eating pizza but was still a little loopy from the anesthesia. I dropped a mushroom on my face and he looked at me and smiled. I asked him “what?” and he responded, “it’s just nice to see you eat. It’s just nice to have you here. I’m glad you’re ok”.

I am lucky.

I am lucky to have grown to appreciate the family, friends, and amazing man I have in my life. I am lucky to have such a close watch on me. I am lucky to know I have this disorder and that I have options. I am lucky to have the nicest nurses in the world taking care of me post surgery but I know what they’re thinking when they see me in the cancer center. I know what they mean when they tell me I am just a baby and I know they feel bad for me and what I am going through instead of realizing how lucky I am compared to some other people. I don’t know what the results from my surgery will be. I don’t know if I have cancer or not. If I don’t I am still unsure as to what my next move will be having this mutation. What I do know is that I will not let this beat me. I will not let this effect my life. I will not look at this as another bad hand of cards but rather a royal straight flush. I am lucky to have discovered this disorder. I am lucky to have options and be able to dictate what happens to my body-an opportunity I bet my mother wishes she would have had. I will work harder to understand. I will ask more questions. I will educate myself. I will find women just like me and let them know they are not alone. I will show them the light in a tunnel of darkness. I will show them how this diagnosis is knowledge about our body that will save our lives. I will do big things and I will make sure every woman with this disorder never feels alone. I will create support groups. I will donate my time to bringing women back and forth to doctors. I will be there for people who do not want to wake up from a surgery alone. I will be there to listen to you cry in confusion. I will educate people about this disorder and I will create awareness. If you have one or more family members that have suffered from cancer get tested. The knowledge could save your life. Spread the word. Knowledge is power. I am lucky to be alive and I m lucky to know I have this disorder and how to deal with it. Don’t be scared of it. Talk about it. Get to know your body and what will make it happy. We are in charge and we will dictate what happens to us in life.

We are lucky and life is too short to be anything but happy.