I’m young and perfectly healthy, but I’m waiting for the day when I finally get sick. While many of us are locked down in our homes due to the coronavirus pandemic, it may feel like the world is currently sharing a collective period of waiting. However, I’m not waiting for sickness from a virus.
I am waiting to find a lump. I am waiting for my test results. I am waiting to elect to remove my breasts. I am waiting to have my uterus and my ovaries surgically torn away from my body. I am waiting for my medication. I am waiting for my doctor. The number of things that I am waiting for goes on and on. It has gotten to the point where I have found that my life is being taken over by the time spent waiting around for a sickness that may or may not ever overtake me.
I am not a hypochondriac, and I haven’t always been waiting to be sick. At 18, I was diagnosed with having a BRCA1 genetic mutation. By having this mutation, I am faced with some very unfortunate predictions about the future of my health. More than 70 percent of the women diagnosed with the BRCA1 mutation will develop breast cancer by the age of 80, and more than 40 percent of women diagnosed with the mutation have developed ovarian cancer by that same age. I am not one to gamble, but even I know that the odds aren’t in my favor. Instead, I have found myself waiting around for the day that I get cancer.
My waiting has left me acutely aware of how malleable my flesh is to cancer. Of course, it wasn’t really a surprise. As a teenager, I watched my mom go through her diagnosis and treatment for breast cancer. Even my younger sister has already undergone a prophylactic double mastectomy at the age of 22. Breast cancer has left both its literal and figurative scars on my family.
When I turned 18, it felt like I had no other choice but to get tested. My mother had received her genetic diagnosis during her breast cancer treatments, and my doctor informed me that there was an estimated 50 percent chance of inheriting the mutation from a parent. So, it seemed like it was “better to be safe than sorry,” since the mutation is known to have an impact on an individual’s ability to develop cancer regardless of how many copies of the mutation have been inherited. During this time, strangers and friends would tell me “it’s better to know”; “it’s better to be prepared.” There was never a conversation about any consequences that came from knowing. No one ever informed me about the issues with the laws, privacy, or health insurance.
Should I tear myself apart with preventative surgical procedures?
Shortly after being diagnosed with my mutation, I started noticing how it began to express itself in different facets of my life. My conversations with my gynecologist, which were awkward enough to begin with, now consisted of lengthy discussions about my not-yet-existing cancer. I was given a timeline about when it would be best for me to stop hormonal birth control, when to begin getting annual mammograms and MRIs, and when to undergo a bilateral prophylactic mastectomy. I was told that I would have to think ahead about my reproductive future and that it would be recommended to undergo a voluntary hysterectomy to remove my ovaries and uterus long before I reached the age of menopause.
To be honest, at 18, it was hard to look that far into the future, and it still isn’t easy. I live with a constant paranoia about any changes happening in my body. Any abnormal period or peculiar feeling in my breasts sends me directly to my doctor with a series of follow-ups and tests that are time-consuming, physically and emotionally invasive, and costly. However, I’ve been extremely fortunate with my reproductive health. While it hasn’t all been the magical twirling in white pants that is depicted in tampon commercials, I have been healthy. However, as long as I am healthy, I am always going to be waiting for the day I’m not.
Since the publication of Angelina Jolie’s 2013 New York Times op-ed about her decision to undergo a prophylactic double mastectomy, more stories have emerged about women investigating their family’s medical histories and reaching toward genetics testing options. While Jolie was criticized over the timing and publication of her decision—facing backlash over her position of privilege as a celebrity and the way she framed her preventative surgery as taking back control of her health—her experience has brought up an important conversation about how to deal with this time that is spent waiting.
While a prophylactic double mastectomy would reduce my risk for developing breast cancer at some point in my lifetime, it would not cure me of my genetic mutation, and it would not end my waiting. Having the BRCA1 mutation isn’t just about getting cancer in my breasts. In addition to breast cancer and ovarian cancer, having this mutation means I have an increased risk for developing cancer in my fallopian tubes, my peritoneum (otherwise known as the tissue lining the abdomen), and my pancreas.
I live with a constant paranoia about any changes happening in my body.
Additionally, preventative surgeries are not something to be taken lightly. They come with potential complications, physiological consequences, and can cause major psychological and social trauma. They are also grossly expensive. Between the cost of the surgery itself, the price of staying in a hospital bed overnight, the painkillers, the drains, transfusions, and anesthetics, it’s a lot of money to pay. In the United States, the average cumulative cost for a bilateral mastectomy is estimated to run about $45,429 without insurance.
I bring up the cost because the current Genetics Information Nondiscrimination Act of 2008 (GINA) only protects individuals like me—as someone who has tested positive for a mutation—from discrimination by insurance companies while they are asymptomatic. The moment I develop the symptoms of my genetic mutation, my rights to non-discrimination treatment are no longer protected under GINA. This puts a legal pressure on me to undergo preventative medical procedures before I can ever develop symptoms, in order to avoid the chance of facing discrimination from insurance companies if and when I finally do get sick.
If this is starting to sound like a scene from the film GATTACA, it’s because the reality of American healthcare isn’t that far off. The only other thing currently protecting me and my rights in the U.S. is the Affordable Care Act (ACA), which prohibits discrimination against pre-existing conditions by health insurance companies. Since dismantling the ACA seems to be one of the top priorities for many politicians, I have been left wondering if I should use up my health insurance to make the most of it before my rights to coverage can ever be called into question.
I most certainly can’t afford the cost that comes with getting cancer.
Should I tear myself apart with preventative surgical procedures? Make the surgeon into my butcher? I could always have them start with my breasts. My life is not literally dependent on them. I could even replace them with some fake ones that are better than the ones I currently have. From porn star tits to the perfectly perky and symmetrical ones, this is the ultimate opportunity for me to go all in with any fantasized cosmetic enhancements.
The surgeon can then work their way down with the scalpel until all my reproductive organs are gone. I’ll have to live without the ability to get pregnant and being thrown into early menopause, which has its own health complications. But on the bright side, I wouldn’t need to pay for birth control, and I can finally toss out all my period-stained underwear knowing that I’ll never ruin another pair of pants again. I’ll survive without my ovaries and my fallopian tubes. As long as my insurance covers the procedures, I will be able to afford the price it costs to stay alive.
But what happens when I get sick because I get cancer in one of the organs I literally can’t live without? I can’t exactly preventatively remove my pancreas. My genetic mutation is not only my pre-existing condition, but it is the condition of my existence. I would not be who I am today without my unique individual genome, and I can’t and wouldn’t want to change that. As someone who is waiting to be sick, I don’t want to bet the outcome of my uncertain future and the protection of my rights on the current state of American politics.
I am now 25 years old. This past December I had my second mammogram. When I walked into the radiology lab, the nurses and office administrators thought that I had made a mistake. They had clearly never administered a mammogram to a patient my age who had no signs or symptoms of having cancer. They had urged me to call my insurance to make sure that the procedure would actually be covered given my seemingly perfect health.
While on the phone with my insurance, I was told that as long as these mammograms were for preventative screenings, the payments would be fully covered by my provider. At the time, it wasn’t something that I had the energy to bring up, but I started wondering what would happen if I needed to have a mammogram during a time that I actually did have cancer. As someone who works as a freelancer, I also thought about how my health insurance coverage is currently being provided for me through my parents, and what it would mean for me when I will have to buy my own insurance after I turn 26.
Since my doctor has recommended I get at least one mammogram and one MRI per year to preventatively screen for cancer, I can’t really afford to pay the thousands of dollars it’s going to cost me out of pocket. I also most certainly can’t afford the cost that comes with getting cancer either.
This leaves me at an impasse. Rather than being empowered by this knowledge concerning my mutation and potential for cancer, I have instead found myself immobilized by the ways my body and the decisions I make about my body have been corrupted by someone else’s political agenda. Who knows what will happen after the presidential election this year? But I am determined to grapple with every moment of uncertainty, every scan, and every biopsied lump that leaves me in cancer limbo. While I am left waiting for the cancer, I hope that, no matter what happens, I will always be waiting for the cancer.
Lyndsey Walsh is an American artist, designer, writer, and visiting scientist at Humboldt University of Berlin. Follow her on instagram @artexvivo where you can see her create art and design things with literal blood, sweat, and tears.
Lead art: Adam Wilson / Unsplash