Love the Genes You’ve Got, But Get Them Tested, Too

December 4, 2018 by CURE Magazine
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I love fashion, and growing up, nothing was better than a good pair of jeans. They could be slimming, make you taller, hide your long torso with a ridiculously high waist. In fact, I love my jeans so much that my motto has become, “the higher the waist, the closer to God!” So, when I was recently told that I needed a genetic test, because of a family history of cancer, I figured I’d have good jeans, and also, good genes. In the spring, I began the process of getting a genetic test done. Unlike other families who do this sort of testing, I didn’t have the narrative where every female member of my family had breast cancer, but there were two cases in the family. After talking to my sister, a pediatric geneticist, and my own doctor, it seemed like a worthwhile use of my time to get tested. I tested positively for a moderate-risk gene, and I am so grateful to have gotten this test done. After having survived my brain tumor, it seemed I was eager to keep any future diseases at bay.

The thing is, the second diagnosis of breast cancer in my family was my mom. My mom. In my disbelief and anger, I thought to myself, “In her life, hasn’t she paid her dues?” In my grief for her suffering, my thoughts wandered to the most irrational corners of my brain. You see, my family had been my most strident supporters during my brain surgery sagas. I was 26 when I was diagnosed with my brain tumor, an ostensible adult, but I was never without loved ones. I was extraordinarily lucky in that regard. My dad came and met my surgeons across the country with me, my siblings spent their holidays and birthdays in hospitals, my husband slept in chairs, on hospital cushions splayed on the ground and we even had family dinners with the hospital bed subbing for the table. My parents, along with the rest of my lovely family, shepherded me through the storm. Mom was special, though. I never spent a minute in the hospital without my mom there by my side. She stayed there day and night. I wondered when she ate, because when I ate, she’d patiently watch me to make sure I had enough in my stomach to let the pain medicine go down. We became inseparable and I became so dependent on her that when she would dare to go to the restroom or to get a drink down the hall, I’d awake suddenly from my drug-induced stupor, childlike and afraid, asking where my mommy was.

It was then I learned that we were part of the same being. Love is like that; it bonds you, unites you, makes you one. I was lucky to find that in my family, with my husband, and with friends, but it can happen anywhere.

So, this woman who loves me so much, and who guided me so fervently through a turbulent time of life, was suddenly sick. The day she told me she had cancer, I had just come in to town. I sat at the table next to her and I surveyed her closely, looking her up and down and thinking to myself, “This must be a mistake, she doesn’t even look sick.” She had her hair still at that point, her body looked strong, her legs stable, her face smooth and lovely as ever. How could this be? I knew better; illness is so often invisible, my own illness hides even from me. I surveyed my dad’s face, looking for answers. He had none, just a quiet resignation of the reality in front of him as his tears dripped down his face. I looked up to see my sister crying, as the shock of my other sister and me, the out-of-towners who had just been told, caused our faces to wrinkle up in disbelief.

Since then my mom has been through the gamut of treatment. She weathered chemo, and though I’m sure at times she was beyond exhausted, she always donned the most fabulous wigs and her signature lipstick. She was sturdy and calm through the pain of surgery and optimistic and joyous as radiation came to an end. She is my hero, and not because she has cancer and pursued life, but because she’s always been my hero. She is selfless and loving, patient, kind, joyful, and man is she all kinds of funny. She is who I have always wanted to be when I grow up.

In the midst of all her treatment, and even as the therapies took their toll on her, she stayed fervent in her devotion to her kids, ever the stoic and strong mom. Once the doctor told her that her cancer could be genetic, she got tested. She did that test for us. She already had the cancer, it didn’t matter what the genetic test told her, but she had four kids she’d go to the ends of the earth for and abandon her day-to-day and sleep in the hospital for. And she wanted to help us. If mom tested positive for any of the cancer genes, then we’d get tested. If not, it was likely that the cancer wasn’t caused by a gene that they have mapped and we could go about business as usual, aka getting our breasts scanned according to the normal protocols.

The day my mom got her test results, she was told she had tested positive for a gene called CHEK2. The genetic counselor looked at her, anxiously awaiting her emotional break down. My mom, cool as ever, calmly explained to the geneticist that she already had cancer, this gene wasn’t going to make her break down. And so, it didn’t make us break down either. It just made us informed, it empowered us with information, driven by what is very fancy science, and gave us a chance to look ahead.

When I got tested for the CHEK2 gene and was told I had it, I made a follow up appointment with my genetic counselor, a lovely and funny woman who indulged all my jokes and puns related to the name of my gene and the checkmarks on her form (for every two checkmarks on the form, I’d happily declare, that’s CHEK2!). She walked me through the increased risk – it’s 40 percent risk that women with the mutation will develop breast cancer, not 13 percent, which is the risk in the general population – and she told me how she and the medical oncologist would follow me through the years as I got scanned. She said she’d be there for me in a way no doctor has ever done. She took the bogeyman vibe out of the room and told me that this was nothing to worry about, not after all that I’ve been through. In speaking with her and the medical oncologist who helped me get scans set up, (MRIs instead of mammograms, sooner and more often), I felt a swell of gratitude.

I was so thankful my mom cared enough to get tested. I was thankful insurance covered the test. I was thankful I had resources and a world-class hospital nearby. I was thankful for the kindness of the people answering my questions.

No one wants cancer. No one wants their mom to have cancer. The reality is, though, that it happens to a lot of people. So many of us suffer from one ailment or another, and so many of us navigate roads full of obstacles in our health. For that reason, we need to share, we need more information, more research. There were a lot of genes we had a reasonable expectation that I didn’t have, the chances were slim. The genetic counselor asked me if I wanted to get tested for them, letting me know I could get what is called a “variant of uncertain significance,” a result that I equate with the shruggy emoji. She told me the reason is that my family is Iranian and most of the samples they have are not Iranian, so until they have more of a sample size, they can’t give detailed results to minorities. I told her I would get tested so that the next Iranian who walks through the door has a better chance of getting more thorough results. She asked if I was okay with uncertainty in my results, I looked at her and knowingly said, “isn’t all of life uncertain?”

We are only given so much time, so many options, and when there is so much suffering, I think we should bring our journeys out of the shadows. For the longest time my mom didn’t want to tell people she had cancer. She didn’t want their pity, and she certainly didn’t want to carry their grief, it’s just not her job. But she told her community, and they loved her more, and she is living in the light, radiant and abundant, helping the rest of us as she navigates the things that lay beyond our control with grace, humor and a whole lot of love – that and a bit of science.

 

Samira Rajabi was diagnosed with a vestibular schwannoma, also known as an acoustic neuroma in 2012. She has had ten surgeries to deal with her tumor and its various side effects. She writes a blog about her life, surgeries, recovery and experiences at LivingWithHerbert.com. She is currently a post-doctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania, where she studies media studies. In her spare time she plays with her two pups and spends time with her husband exploring Philadelphia.