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Sisterhood of the Matching Scars

by Deana Holley & Lisa OrrA Sibling & A SurvivorDecember 1, 2022View more posts from Deana Holley & Lisa Orr

Nine Scars and Counting

by Lisa Orr

As I step out from the shower and wipe the condensation from the mirror in front of me, I see a woman who has been through more than anyone my age should have ever had to endure. Five scars—from my breasts to my lower abdomen and from countless biopsies and two different surgeries. Four permanent tattoos from radiation sprawled across my chest. Endless aches and pains that should never plague a body that has only been on this earth for 35 years. All these things never would have been there had cancer not walked into our lives. Not walked, crashed into our lives. Cancer causes permanent destruction to your mental state and changes your body in ways that you just can’t prepare yourself for. There are insurmountable scars—both external and internal—that I will be working through for the rest of the days I am given.

Like many women, I spent my teenage years and early twenties silently tearing my body apart piece by piece. As women, we are constantly comparing ourselves to others; something that begins from a younger age than I care to admit. Fast forward several years and a wedding later to the happy time when my husband and I excitedly decided we were ready to expand our family. Being pregnant was an incredible experience; the idea of your own body growing a life over the course of nine months is mind-blowing. But little by little, your body changes in ways that you are not prepared for. It is easy, however, to see past the stretch marks and extra pounds you carry because of the beautiful reason for those changes. When your body is forced to undergo indefinite changes due to circumstances beyond your control, it feels different . . . it is different.

My younger sister Deana and I have always been close. We are only two years apart, and even though we look different, we would always get confused for twins. I believe this speaks to our closeness, and it would always make us laugh under our breath as we ran off knowing we tricked yet another person. If you had told me back then that someday we would share an even deeper bond, one that neither of us asked for, I would have been confused. This year, we learned that we share something in common that I wish we didn’t, and that common thread unfortunately relates to my own cancer experience.

RAD51D, a seemingly harmless gene that only four short years ago I was told “could mean absolutely nothing or could one day give us insight into why you were diagnosed with cancer.” It was difficult to wrap my brain around the casual tone in which this news was shared with me. “You will hear from us if anything changes regarding the knowledge we have of this mutation,” the woman said, not realizing that the statement she was making had all the markings of an invisible bomb being set to an undisclosed time inside my body yet again. The difference this time? I knew the bomb was there, like a silently ticking box that could explode when I least expected it.

You would think that going through a cancer diagnosis at 31 and dealing with countless medical professionals with varying levels of appropriate bedside manner would have prepared me for the moment my cell phone rang that day. I was driving to pick up my younger son from preschool when an unknown number flashed across the screen. Without a second thought, as I pulled up to the school, I answered it. As soon as the chipper voice on the other end told me where she was calling from and asked me if I had a minute, the ticking of the imaginary bomb became louder and louder until it was deafening.

“More research has been done, and we now feel fairly comfortable saying that there is a chance this genetic mutation may give us insight into your previous triple-negative breast cancer diagnosis,” she stated. I remember huffing under my breath, my previous diagnosis? You mean the one that still crosses my mind every single day? There is nothing previous about my cancer experience. I still live it every single day. She said that in addition to breast cancer, this gene also has implications connected to ovarian cancer. As if we didn’t have enough on our plates to worry about, an entirely different type of cancer was now thrown into the mix.

She went on to explain that all the paperwork would be sent to me and that I would have to contact the corresponding department at the institution I was treated at. I would need to make a follow-up appointment with a genetic counselor to discuss the results further and create an action plan. All these words and tasks swirled around inside my head as the distant sound of childhood laughter rang through the awkward silence and deep breaths. All I could muster up to say was “thank you,” however, just before I hung up the phone, a vision of my sister as well as my mom and dad came crashing into view. “But what does this mean for my family?” I asked. “Oh yes,” she paused, “they should absolutely get tested, please have them call me.” I hung up the phone and the weight of her seemingly simple request felt like a suffocating weighted blanket that I couldn’t remove by myself.

Years of guilt from putting my family through the trauma of my diagnosis felt clear as day once again in that moment. We were finally getting to a place where we were creating new memories as a family. Cancer was deeply ingrained in our daily lives, but we were moving onward and upward. That was, until this phone call. This one phone call would set us back as a family exponentially, and I did not have it in me to share the news, even though I knew I had to. So, just as I did years ago during treatment, I plastered a smile on my face and pretended my world wasn’t currently crashing to the ground. I picked up my son from school and chatted with him about the books he read that day and the crafts he made, until I got home. I made the phone calls to my mom and dad and to my sister. Hearing the shaky terror behind their words of encouragement is something I will never forget.

Over the past year, we learned that it was my father who carried the gene, allowing me and my sister to feel comfort in knowing that my mom was safe from what I endured. My sister, however, did not get the same news as my mom. She is a carrier; the news of which broke me down knowing that the cycle doesn’t end with me. She has a daughter now. What does this mean for her and her future? As a family, we delicately danced between feelings of sadness and feelings of empowerment. My sister would now be faced with a difficult decision of her own, but one that could save her from going through what I did. My dad’s siblings would go on to be tested, which would lead to cousins and their own children being tested someday.

My sister and I share matching scars now; two small lines where our fallopian tubes once were, with difficult decisions regarding additional matching scars on the horizon. Our bodies have been cut apart and sewn back up due to this recent news. In addition to our brunette hair and our matching dimples, we will always be linked by our complementary scars, forever hoping that enduring them will prevent us from future sadness and pain. Hand in hand, we march through the unknown together.

A Sister’s Perspective

by Deana Holley

You are never prepared for getting news that someone you love is going to have to fight for their life. When I found out my sister—who is only two years older than I am—was diagnosed with triple-negative breast cancer, it felt like the world stopped. I spent the following year watching her go through treatments that wreaked havoc on her fragile body but were ultimately lifesaving.

I knew there would come a time when we would have to explore the “why.” Why did she get cancer and I didn’t? She is so healthy, she takes such good care of herself. Why? I will never forget the day we heard that the RAD51D mutation that was once of uncertain significance was now extremely significant. I was shopping at Target when I got the phone call from my sister. I remember abandoning my shopping cart and going straight home. She explained she would need her fallopian tubes removed as soon as possible, her ovaries removed soon after, and that a double mastectomy was recommended. As if fighting for her life wasn’t enough, now she had to endure surgeries that will continue to change her body forever.

Ultimately, I would have to be genetically tested myself. Being a naturally anxious person, waiting for the results was the worst. Yet again, I will never forget the phone call. I was driving downtown and had to pull my car over so that I could cry and collapse into the steering wheel. I would say disbelief was the first thing I felt when I heard I had the same genetic mutation as my sister. Next, came panic.

Many doctor appointments followed where I learned my options. Knowledge is power … or ignorance is bliss? I spent months bouncing back and forth between the two. How could I feel so blessed to have this information (thank you, science), but also wish I never knew so that fear wouldn’t take over my life? Knowing I had to now worry about my daughter’s future in addition to my own tore me apart. After lots of deliberating with my family, I knew removing my fallopian tubes was the right first step to ensuring I have a long and healthy life. Already having two beautiful kids, I knew my family was complete. However, there’s something about the finality of it all that makes it feel so incredibly heavy. Are there other ways I could grow my family in the future if I wanted to? Sure. That was definitely a comfort. Then came the abundance of other questions: what do laparoscopic scars look like? Would you be able to see them? What will my husband think?

Flash forward to the day of surgery. It hit me hard that day. It became real. I have a vivid memory that has really stuck with me. I kept thinking “Deana, you should take one more look at your belly without scars.” But I physically couldn’t get myself to pull down the blanket. It felt too difficult. The emotion was so strong that all I wanted them to do was put me to sleep so that it would be over. I never looked.

Today, I look at my scars and I see strength. I see an even stronger bond with my sister. Doing something so drastic, even as a precaution, was one of the hardest decisions I have ever had to make. I know that there are many more difficult decisions in the future because of this news, but I’m taking it one step at a time. What is helpful is knowing that I am not alone in this. So many women out there are making decisions like this every day. They know their bodies might never look the same, but having a long and healthy life to live makes it an easy choice.

This article was featured in the 2022 Body issue of Elephants and Tea Magazine! Click here to read our magazine issues.

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