Amanda "I Thought I Was Lucky"
Photography by Randy Bacon
When I was sixteen years old, I was diagnosed with Stage II cervical cancer.
My mom had scheduled my first pap smear because of my age. Prior to my exam, my doctor and I discussed how my periods had always been a problem. There were times I had missed school for an entire week because I would bleed through my clothes or wake up violently ill. I will never forget that exam. Not because it was a crucial moment towards becoming a woman. No. I will never forget it because of the pain. I had never experienced true pain until that very moment. The excoriating pressure and the sensation of something ripping. I remember crying all the way home.
My mother never expected to receive a phone call. Within a week, I was scheduled to meet the OBGYN. That day, the four of us were cramped in a small exam room. My mother sat on my left, gripping onto my hand as the doctor went over my treatment plan. My boyfriend, now husband, sat on my right.
After surgery, I wasn’t prepared for the nightmares. Vivid dreams of my legs spread open while my OBGYN scrapped out what was left of my cervix. Dense, infected tissue floating in a tiny, plastic cup. A nurse stood next to me while I gripped onto the hospital bed. My knuckles turned white, and the clenching made my hands ache. Even though the doctor said she had used a numbing agent, I didn’t believe her. When I started to scream in my dreams, I would wake up from myself screaming aloud. My chest would be hot, and my clothes soaked in sweat. Then, my emotions would dissipate once my stomach began to turn. Chemo had a tendency to hit me at the worst times.
During those long nights of sleeping on the bathroom floor, only one thought consumed me. If only death would come.
My mother was depressed and my boyfriend was exhausted. Caregiving had become a full-time job, and the two of them would take shifts. On days I spent at home, I’d wrap myself in blankets while my mother helped me with my homework. Late afternoons spent reciting lines from classical literature. Oedipus Rex, The Odyssey, and Dante’s Inferno. She even helped me make a poster of what I believed to be the seven layers of Hell. It was covered in disjointed magazine clippings and hand drawn flames. A poor interpretation of what Hell was really like.
When I had enough strength to go to school, my boyfriend would walk me to every class. During lunch, he would watch me while I ate. Making sure I was consuming enough calories, and not just moving food around on my plate.
Some nights, when my mom had to work late, he would stay with me until it was dark. We would sit in the fraying hammock in the backyard, watching the fireflies dance above the tall grass. As the sun set in the distance, a cool breeze would rustle the tree limbs above us, and the birds would chirp an unrecognizable melody. During those moments, we would never speak. Instead, we would listen to the music being made around us.
I graduated high school in 2007. One year and two months after my diagnosis. My gown fit loosely around my body, draping each curve in all the wrong places. The chemo had made my hair brittle, which made my scalp itch underneath my cap. I put on makeup so my skin wouldn’t look as pale, and so no one could see the dark circles under my eyes. I was tired but I was also lucky. At least I thought I was…
When I was twenty-two years old, I began to experience discomfort near my pelvis and lower abdomen. I would have sharp, stabbing pain that felt like I was being punched. The air escaping from my lungs with each blow. When I first started experiencing symptoms, I was terrified that the cancer had returned. Just like before, I was in so much pain that I was vomiting and having to stay in bed all day.
When I finally had the courage to visit my OBGYN, she ran multiple tests: blood work, pap smears, MRIs, and ultrasounds. I was relieved when each test came back negative. However, I was also frustrated because the pain never ceased.
For two years, I endured pain that no woman should experience. Physically and emotionally. I remember feeling hopeless, defeated, and angry.
I visited my OBGYN frequently. Each exam taking its excruciating toll. Each time the speculum penetrated by body, I had to hold the nurse’s hand. I would look into her eyes and take heavy, staggered breaths. As I felt the welling start behind my eyes, I tried to concentrate on what she was wearing, or the picture on her name tag. I never managed to remember her name.
After every exam, I would leave without an answer or a solution. Instead, we tried pills and shots. Diet and exercise. Vitamins and herbal supplements. Each resulted in disappointment. At one point, I gave up on everything.
I stopped going to my college classes and work. I stopped hanging out with my friends. Mostly because there are only so many times I could cancel plans without someone saying, “Enough.” I spent days wearing the same clothes, not showering, and sleeping on my couch. There were even times I just wished it was cancer. At least when I had cancer, I had answers. Instead, I felt as if I had nothing.
I had my first laparoscopy in 2012. Since none of my doctors had an answer for my pain, this surgery was the only way to possibly diagnose the problem. After forty-five minutes, the OBGYN returned to the waiting room to divulge her findings to my husband and mother. My diagnosis was endometriosis and polycystic ovarian syndrome. Even though she was able to determine the cause of my pain, treatments for both diseases were, and still are, limited. There is no cure for endometriosis and the recurrence rate after surgery is high. Many treatments include different types of hormone suppression. However, this type of treatment has its challenges. For me, I received an injection once every three months that stopped my period. This shot made me have acne breakouts, nausea, mood swings, and hot flashes.
Many nights, I would soak in an Epsom salt bath, letting the water become cold as I contemplated an easy escape. Once, I let myself drift underneath the still surface. I held my breath until my lungs felt tight and shrill. For a brief second, I opened my eyes and looked up at the opaque ceiling. As I exhaled, the water rippled away from the tub’s smooth edges, and once again, I closed my eyes. As I began to feel lightheaded, only one feeling consumed me. Guilt. For the longest time, I felt like I was a burden to my mother and my husband. That my constant state of medical distress was taking a toll on them mentality and emotionally. I felt guilty for every doctor’s visit and trip to the emergency room. For every scan, blood draw, and urine test. Most of all, I felt guilty for every day they endured watching me suffer.
Then, a feeling I had long forgotten began to well in my chest. At first, I thought that I was just out of air, but then I felt it rise into my throat. When the burning sensation started to fill my nostrils, it became so painful that I eventually pushed my head through the still surface. My cough echoed through the empty house, leaving nowhere for me to hide.
I didn’t even bother to dry myself off. Instead, I stood in front of the half-steam covered mirror looking at my reflection. I stared at the three scars on my swollen, lower abdomen. As I traced the rigid lines with my fingertips, I stopped trying to fight it. And for once, I let myself feel true anger. The next day, I scheduled an appointment to meet with my OBGYN. Rather than walking into her office in tears, I was determined to get some answers. She tried to argue with me. Told me that it was all in my head and that it was impossible for me to be in pain. That I hadn’t given myself enough time to heal.
I was appalled by her insensitivity and her lack of compassion. How could she ignore my history? How could she ignore my symptoms? With each argument, I had a counter. Before my visit, I had devoted myself to researching possible treatments. I suggested other therapies we could try, or how a partial hysterectomy was an option to consider.
For a lot of younger women with endometriosis, a hysterectomy is not the first thing to come to mind. Especially for women who have yet to have children. However, a lot of these women have probably not experienced cervical cancer. At sixteen. Before my surgery and chemo, I was told I would never have children. That if I tried, I would most likely miscarry or have severe complications. Because of this, I had never imagined myself with children. I had never dreamed of giving my daughter butterfly kisses or taking her to ballet lessons. I never dreamed of her going to college, or getting to walk her down the aisle. The person who had told me that having a child would never be in my future was the woman that stood before me. Now, she was saying that a hysterectomy was not an option in case I wanted to have kids. Someday. I looked at her in disbelief and confusion. As I stood there, I pondered what I could say back to her. But nothing ever came. Instead, I walked out of her office and I did not have any intentions on coming back.
Two years ago, I made the decision to become my own advocate.
During my post-op visit, it became clear that my opinion didn’t matter. In what felt like a never ending conversation, I expressed to my OBGYN that I was still experiencing symptoms. That the overwhelming pressure around my pelvis had persisted. She gave me the same answer as before. “You haven’t given yourself enough time to heal. Let’s start you on your birth control again next month.” At the moment, I knew I was the only one who could break the cycle. That I was the one who needed to start listening to myself. That night, I told my husband what I had done. That I was tired of letting this disease define me and control our lives. We sat at the kitchen table for hours researching local clinics and doctors. We even looked at online support groups, foundations, and nationwide clinical trials. It was the first time I had seen him smile when talking about this disease, and I couldn’t help but smile back.
I called my primary care physician and told him to give me a referral to a specialist in endometriosis and polycystic ovarian syndrome. I gave him the list of providers my husband and I had found. I told him I wanted someone who was well-respected in the field, and who was highly rated by their patients. Most of all, I wanted someone that was going to listen to what I had to say.
My first visit with my new OBGYN took almost an hour. I told him my story, my expectations, and the type of relationship I expected between the two of us. He was originally horrified when I told him what I had been through. Over the course of two years, we developed and implemented a treatment plan that aligned with my goal. However, since I was a new patient, we had to start over. We were required to gather our own evidence to justify why I needed a hysterectomy. Why? Due to the fact that I was under thirty years old and had never had children, my insurance wouldn’t cover the procedure. To prove that such measures were necessary, I was required to exhaust every option prior to a hysterectomy.
I am now twenty-nine and I am in the process of researching other treatments, specialists, and research based medical centers. Since December 2018, I’ve been keeping a journal of my symptoms, documenting my ovulation cycle and periods. Writing down every cramp, acne breakout, and nausea spell. Sadly, I have yet to have a day without symptoms. I see my OBGYN in April (2019) to discuss our next step. However, I am currently unsure of what that next step might be since I am running out of options. During this new process of trial and error, I have learned many valuable lessons.
I have learned that it is okay to takes days to rest. That it is okay to feel frustrated and angry. That it is okay to tell people that I am not feeling well and not to feel guilty after. That it is okay to stand up for myself, and that my opinion is valuable. That I am not powerless. That I am not hopeless. And that all I can hope for is a day without pain. Someday.
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