In our monthly column, senior writer and editor Adriana Ermter shares her personal experiences with breast cancer.
By Adriana Ermter
I’ve started counting the number of times I emotionally beat myself up every day. Each mean, cruel and hurtful criticism said silently to myself in the privacy of my own mind. Yesterday I hit number 22, my all-time high for the week. So far today, I’m up to seven unkind thoughts. It’s nine o’clock in the morning and my alarm went off at 6:30 a.m.
I’m not proud of this. I’m not even sure sharing such personal information in an article is a good idea, but I’m here to be honest and to write about the topics most of us want to hide. This article makes me nervous, though. I’m worried what people, my people who have no idea I’m in this headspace, will think when they read this story. My words, my truth, the things I’ve written here, are embarrassing. I know better. I could, should, do better. I would never say the things I tell myself to my mom, sisters or a friend. But I can’t stop.
Playing the Blame Game
I also can’t pinpoint the exact day my internal commentary began, I just know that it started as a result of feeling out of control. After my breast cancer diagnosis, I lost pieces of myself, including my dignity, physical strength, femininity, slim body and self-love. Each part slowly, quietly, slipped out of my grasp. For punishment, because I have to blame someone, I pointed the finger inwards, shaming myself for every bad decision I’ve ever made. And when that didn’t pan gold, I mined the warped, self-made stories I’d told myself about myself to identify which one had manifested the tumor that had grown inside my body, because having breast cancer had to, has to, be my fault.
When I shared this theory with my oncologist, he refused to accept it. Breast cancer is random, he said. You did not manifest cancer into your life, he said. Stop looking for answers where there are none, he said. I tried to follow his advice, but it was tough. Yet my post-surgery pain, the pain meds, exhaustion and sleep helped to temporarily mute my twirling mind and I was grateful for the reprieve. Then, two weeks after the surgery, after I went back to work full-time and began my daily radiation treatment, bam! The negative thoughts were back and this time, telling myself I’m stupid became my primary message.
To be fair, I don’t actually believe I am stupid. With an IQ of 134, I’m second in brains to my niece who, at an IQ of 142, is the family’s smartest smarty-pants (she’s also funny, sassy, caring, talented and beautiful). Pre-cancer, I was the queen of multi-tasking, I could convert pesos to dollars without a calculator and I picked up languages like they were pennies on the ground. Post-cancer, those parts of myself have dimmed and I miss them. Grappling with the psychological drain of my diagnosis combined with an energy-depleting surgery, treatment and a body that’s still on the mend have crippled my memory.
Sure, I can remember the yellow, orange and green floral wallpaper that hung on the kitchen wall in my childhood home as clearly as if it was yesterday. I can list the names and scents of every perfume my mom, sisters and I have ever worn and I can share in detail the time I won a bet by eating an entire one-pound cheeseburger (with extra pickles) on a large glazed donut (it was delicious). But remembering the name of the book I’m currently reading, how much I pay for my monthly parking spot and who I have a Zoom appointment with tomorrow? Those facts are almost always out of reach, hidden behind the breast cancer fog.
Living in the Fog
According to the Breast Cancer Organization, cancer treatments like surgery, chemotherapy, radiation and hormonal therapy drugs can cause side effects that can affect sleep, memory and concentration. It’s called the breast cancer fog. For me, particularly during the first 18 months after my surgery, this fog was heavy, thick and hazy. It erased people’s names and diminished my ability to carry an articulate conversation as I frequently forgot what I was talking about mid-sentence. I could only remember one thing at a time and even then there was no guarantee for how long, so I was forced to write down everything I thought was important in a notebook or on my iPhone. Straining to remember what day it is when I wake up in the morning is still my new normal, just like how concentrating on a task or focusing on a conversation continues to blinds me with dull headaches, while waves of fatigue hit me at random times, washing over my entire body and turning sleep into a constant craving. Never have I ever felt more vulnerable, incompetent and unsure of myself… especially at work.
Immediately following my surgery, when I was still working at an office, the two men on my team became experts at filling in my mid-sentence gaps. I’d warned them about the brain fog I was experiencing and they’d simply smiled and said: “we’ve got your back.” They supported my need to document meetings, confirm next steps and outcomes and constantly kept me in the loop with progress updates. I couldn’t have asked for better colleagues. The two, 11-year-old synchronized swimmers I was coaching part-time back then also adapted to my unique ways. Because I couldn’t remember more than one thought at a time, I recorded my feedback on my iPhone as I watched my athletes swim and then, after they were finished and had swam back to the side of the pool, I would play the recorded feedback for them to listen to. Too many times to count I also struggled to recall the updated names for the sport’s compulsory figures and would use old-school terminology instead. The girls were terrific and just went with the flow. Sometimes I’d hear them telling other athletes, “We know it’s Fishtail, but Adriana likes to call it Crane, so we call it that too.” The only difference between my young athletes and my colleagues at work was that the girls didn’t know my lapses in memory were because of breast cancer. The athletes, along with the team of seven 13- to 15-year-old athletes I coached the following year, simply took me at face value and adapted to my use of videos, recorded corrections and typed up, structured lesson plans.
Creating structure within my day-to-day life wasn’t as easy. I’d been warned that I might feel tired and disoriented throughout my cancer journey and I did. I was also told that once the cumulative effects of the treatments wore off, approximately six to 12 months after my final session, my memory would bounce back and I would feel recharged. I did not. Tamoxifen was to blame. The chemo-infused, estrogen-blocking drug I now took daily counted brain fog, along with the night sweats, weight gain, joint pain and hot flashes I was also experiencing, as one of it’s 20-plus side effects.
Reaching a Breaking Point
Tamoxifen’s impact on my already flailing memory felt like the nail in the coffin. I’d thought the most difficult aspects of breast cancer would be behind me and I would move forward once my treatments stopped, but Tamoxifen’s forced menopause and side effects held me in their grip. Sleep deprivation—thanks to getting up and peeing every two hours, combined with the night sweats that had me getting out of bed dripping wet to change my pyjamas—made me groggy and grumpy in the mornings. The nausea, blurry eyes, dizziness, sense of confusion and stiffness were also relentless and despite the doctors saying these symptoms would ease up after I’d been on the drug for six to seven months, it never happened.
What did happen, however, were uncontrollable moments of sadness and depression. These emotions washed over me, pulling me into such a deep darkness I thought I’d never be my pre-cancer self again. The cruel thoughts and name-calling I’d been pummelling myself with were now amplified, playing on a continuous loop in my mind.
Along with the brain fog, fighting this internal recording made my headaches worse. They corrupted my vision leaving messy, smudgy edges around the pictures of my life. They were so isolating, leaving me with just enough emotional space and physical energy to stumble home after work, feed my cat Trixie-Belle and fall onto the couch or head straight upstairs and crawl into bed where I’d stay until the next morning when I’d get up and do it all over again. Life sucked; there had to be something bigger, better. It took awhile, but I eventually reached out to my oncologist who booked an appointment where he performed a series of blood tests on me. Then, he prescribed 5,000 mg a day of over-the-counter vitamin B12 for me to take for the next three months. I did and I continue to take 1,000mg of B12 daily. It has been a game changer.
Seeing the Light
Within 24 hours of ingesting the vitamins, I could practically hear my brain cells transmitting information to other neurons, muscles and tissues in my mind and body. The brain fog was still there, but I could now shine a light through it. It took another month on the B12 before I had enough energy to seek additional support from a doctor of Chinese medicine. When I did, the acupuncture she administered to my body helped push away more of the fatigue. Her suggestion to increase my daily water intake from eight to 12 glasses each day has also helped to further clear my mind. It has me peeing constantly, but at least I feel like I’ve won back some of my mental freedom.
Three months ago, I started seeing a psychotherapist. The weekly 50-minute Zoom sessions relieve the tension in my head and shoulders and I’m learning new ways to reclaim my mind, body and self-esteem, which I like. Sharing my ugly private thoughts with my therapist is surprisingly easy and fills me with hope. So while I know there’s a chance my brain and my body may never function exactly the same way they did before I had breast cancer, which is hard for me to accept, I’m now able to release my need for control through meditation. I’d like to say I sit in a yoga pose and deep breathe for 20 undisturbed minutes each morning, but that would be a lie. Most days I just prop myself up against the pillows on my couch while I’m still in my PJs and fluffy bathrobe. Sometimes I can only manage five minutes before my mind starts to wander and I call it quits. That said, I’m consistent with my efforts and I think that’s what is most important.
I’m consciously working on being more patient with myself too, so that when I can’t remember if I called my sister to say hello or when I’ve forgotten to buy eggs at the grocery store for the third time in a row I don’t automatically beat myself up with cruel words. People’s names aren’t as elusive as they used to be either and when my internal anxiety bubbles up and tells me I’m not smart enough to coach my swim team or to secure a new contract (I work independently now), I can usually talk myself down from this negative place. I’m trying to replace unkind thoughts with gratitude, like how I’m grateful to have beat breast cancer or how I’m thankful for being stubborn, because it’s helping me persevere and to see my way more clearly through the brain fog. It’s all a process, one that will take time before I can tap into it on autopilot. My current goal is pay attention and tune in when I silently berate myself, then pause and tell myself that this is an old behaviour that doesn’t work for me anymore. As part of my homework from last week’s therapy session, I wrote a list of positive adjectives to describe myself. Not just nice words that sound good, but things I actually believe about myself. Tenacious, courageous and authentic were at the top of my list.
Adriana Ermter is a multi award-winning writer and editor. Her work can be read in Figure Skater Fitness and IN Magazine, as well as online at 29Secrets.com, RethinkBreastCancer.ca, Popsugar.com and AmongMen.com. The former Beauty Director for FASHION and Editor-in-Chief for Salon and Childview magazines lives in Toronto with her very spoiled cat, Trixie-Belle. You can follow Adriana on Instagram @AdrianaErmter