This blog post has been sitting in my google drive for the better part of a year now. I didn’t know when to post it, or if I even should, but I’m coming up onto a year of receiving my test results and I feel like it’s something that needs to be talked about. I hope my story ignites courage in someone out there who has a family history in breast and ovarian cancer to get tested and be fearless.
Awareness is a powerful tool. It’s what takes us out of the dark from our own ignorance. It gives us the knowledge to make better, more informed choices in our lives. But awareness can also be alarming because there’s no unlearning what you’ve just discovered. Will you be able to handle it? Will you be able to grasp this new part of your life? Will you be able to move forward or will it hold you back? I don’t blame people for wanting to stay oblivious to certain parts of themselves but in my case, I had to know. This was my health. I needed to know for myself, my soon-to-be husband, and our future children. So I jumped in, head first, into full consciousness.
On January 9, 2018, I received a called from a genetic counselor from Dana Farber in Boston. This call was the beginning of something momentous for me. My mother was diagnosed with ovarian cancer back in February of 2015. After going through her family history, she realized that a lot of relatives on her father’s side had breast and colon cancer. So she went to a genetic counselor, was tested for BRCA2, and came out positive.
At the time I didn’t completely know what that meant but I was told that in a couple of years, at 25 years old, I’d have to be tested as well. Now, over 2 years later, I was driving home from work, talking to my friend Phyllis, when my call-waiting beeped. I had been anticipating this call for about a month now and I anxiously accepted it, unsure of the outcome and of how I’d react. I told Phyllis that I’d call her back and I clicked over to the genetic counselor, Kathy. Kathy, a gentle and soft spoken woman, asked if I was available to talk. I told her, yes, that I was on my way home from work. I was actually driving by a cemetery if that’s not some twisted, poetic symbolism for ya, but I was prepared for any result. I just wanted to know.
I first met Kathy with my dad back on December 15, 2017 when I went in for the blood test and counseling/information session. The whole appointment was 3 hours long and consisted of 3 different meetings. Kathy was the first of the three. She sat down with my dad and I, and went over my family history. It was strange, this woman, a stranger, spreading out my family history over a portfolio; unraveling the previvors and survivors of this genetic mutation. She asked if Randy and I were planning on having children and that if I’m positive, Randy will need to get tested as well. Two parents with BRCA2 run the risk of passing down both of their mutated genes to one child. This could lead to devastating side effects. Finally, Kathy explained the emotional aspect of being positive for BRCA2 and what Dana Farber offers for support groups and therapy.
My second meeting was with Dr. Rana, she went over the medical side of BRCA2. She broke down the risks in percentages compared to the rest of the population. Dr. Rana also explained what surveillance and eventual procedures I’d go through if found to be positive. As she spoke, I began to understand the immense responsibility I was going to hold if I came out positive. Because I’d be at such a high risk, I’d need to make sure:
- I always keep my weight down
- I never skip a doctor’s appointment
- I get a breast exam twice a year
- I get a pelvic exam by a gynocologist every year
- I go for a MRI at Dana Farber’s once a year
- I would have surgery to decrease my risk of ovarian cancer after having my last child
- After my children are of school age, I would have a double mastectomy and then reconstructive surgery to dramatically decrease my risk of breast cancer.
I nodded my head, and with soft uh huh’s and okay’s I showed that I understood what she was saying but in my head…
What the f@*#?! When I woke up I was freaking 25 years old. I was young and full of hope! And NOW you want to talk about chopping my chest off and taking out parts, or all, of my reproductive organs!? I’m not ready for this, I can’t walk around knowing that I’ll eventually be maimed and torn apart. And Randy, he’s going to constantly worry about me. I can’t put this on him. And what if you don’t catch it during an appointment and I get cancer anyway?! I have a 50-85% chance of getting breast cancer in my lifetime, is this a f@*#!%$ joke?!
But of course on the outside I managed to keep it together. At this point in my 3 hour reality check, both Kathy and Dr. Rana commented on how level headed and how well I was taking all of this. They obviously didn’t have the gift of telepathy.
The third and last appointment of the day was to get my blood drawn. This was the easiest appointment. I sat and waited for the nurse to call my name. The wait gave me time to reflect on the day. I decided that even if the results came out positive, I would be okay. I thought about how lucky I was to be given the chance to take this test and find out if I have BRCA2 or not. I thought about the women in history who weren’t able to take advantage of this medical advancement. I thought about the women even now who don’t have this opportunity. I decided that I had to take this diagnosis and use it as motivation. I would not let this get the better of me! I couldn’t allow myself to succumb to weight of the results. I told myself, that regardless of the results, I needed to live my life without reservations. I was going to continue doing the things I love and try to cherish every moment I can.
Of course though, I’m not naive. We all have obligations and responsibilities in life. And some days will just suck. But when someone tells you that you are more than 50% likely to have cancer in your lifetime, you don’t want to squander your time at a job you hate, living in a place that doesn’t satisfy you, and doing things that don’t ignite something in you. So the areas of my life that displease me, the areas that I can control and change, I will. I will take action and ownership and not live passively.
Fast forward 3 weeks later, Kathy softly said over the phone, “I’m so sorry Monika but you did come back positive for BRCA2.” I kept my composure as I drove, I had known that this was a 50/50 chance. I allowed myself to shed one tear before I collected myself and listened to the rest of the medical jargon and routine information. I could tell that Kathy had repeated this same speech about a thousand times before but her sincerity was fresh and heartfelt. She reassured me that whatever feelings I felt were normal and that I needed to be open to feeling everything, good and bad. Kathy informed me that I’d receive a call soon to schedule my next appointment. This appointment would be to discuss the results and check in with me emotionally. I admired Dana Farber’s efficiency but I needed time to digest my new diagnosis.
I called Phyllis back and told her the results, without missing a beat, she was a true friend. The same friend that I sat out on Spanish patios with, drinking wine, talking shit, and laughing with, offered me earnest words of comfort and love.
As I drove, I thought about how to tell my parents. They, along with myself and Randy, had been on pins and needles waiting for the results. I didn’t want to worry anyone or make this a big deal but I also recognized that I can’t control how the people around me will react.
My mother was sad, she hugged me and said that she had hoped it wasn’t going to be passed down. She was realistic, like myself, but still had that hope that the 50% chance of a negative result would have come to save the day. My father was also sad and true to who he is, dove deep into research. My father copes best when he has information to disparage any irrational fears, so I let him do his investigation. Randy was strong for me, he listened when I was worried, embraced me when I felt defeated, and was quiet when I needed there to be silence.
Time has passed and to be honest, I’m doing okay with it. Not horrible, but not great. Most days I don’t think about it but then there are those bad days when the thought will enter my mind like an incessant jingle from an annoying commercial, unwavering in its intent to bother me. On those days, I try to focus on the positive: I’m alive, I’m not sick, I don’t have cancer right now, and I’m lucky to have been given this chance to find out before something serious happens.
My family supports me, my fiance supports me, I have doctors and resources to help me understand this better, and I hold the power to take preventative action. Like I vowed to myself as I was getting my blood drawn, I won’t let this get the better of me. I’m going to change the unfavorable parts of my life and live actively. I’m not going to go skydiving every day or anything like that. But, doing things like, insistently making a place in this world for myself, allowing Randy and I to create our own unique life, or even just loving myself is a good start.