What It’s Like To Have Cancer As A 20-Something

When I was 22, I was diagnosed with thyroid cancer. The diagnosis came after years of feeling sick and running from doctor to doctor and specialist to specialist. Some told me my symptoms were psychosomatic. Some diagnosed me with the wrong disease. Some handed me painkiller prescriptions and then nausea prescriptions when I vomited from the painkillers.

Eventually, I ended up in the office of a naturopathic doctor who tested my thyroid levels and noticed they were elevated. Next, I went to an endocrinologist who diagnosed me with hyperthyroidism (elevated thyroid hormone levels) and ordered an ultrasound of my neck to be sure. A week later, I laid on a hospital bed as an ultrasound technician rubbed cold ultrasound gel onto my neck. I laughed because a couple hundred miles away in California, my pregnant sister had the same gel on her belly.

We didn’t expect anything strange to come from the ultrasound. It still felt like a formality at that point – like a doctor being thorough and covering his bases. But that’s not how the story ended or I wouldn’t be writing this.

A few days after my ultrasound, I got a phone call. A receptionist from the endocrinologist’s office told me there was something abnormal in my ultrasound and the doctor was suggesting a biopsy. They didn’t have openings for two weeks, could I come in on the Monday after next?

I heard the word biopsy and my mind went numb. My reaction was immediate and visceral. Hot tears chased each other down my face and I choked out an answer. My bedroom door was open and my mother heard my voice. More specifically, she heard what was wrong in my voice. She walked in my room and whispered ‘what’s wrong’ while I hurried the receptionist off the phone.

My mother sat on my bed. I cried. I cried so hard I couldn’t answer. I knew what biopsy meant. I knew it wasn’t a formality anymore, that something was really and truly and irreversibly wrong. And my mom, God bless her, kept asking what was wrong and held my head in her hands.

“He wants a biopsy, Mom. Something is really wrong,” I said. My own voice sounded foreign to me, like it was coming out of someone else’s throat. These words, the ones I never thought I would have to say.

“What do you mean? Who was that?” she said.

“He wants a biopsy!” I screamed. “The doctor! They found something or- I don’t fucking know. A receptionist called me, not even a nurse or something.”

“Okay,” she said. “Okay, let’s go. We’re going to go to the doctor’s office and figure this out.”

I sat in the passenger’s seat of my mom’s car, watching the city speed by through the window. Alternately, I screamed and cried and fell silent. My mom kept one hand on the wheel and the other holding my hand. She talked about the people she knew who had biopsies but didn’t end up having cancer — didn’t I know the same thing had happened to my aunt and it had been nothing? This was another formality, a small blip, something we would laugh at years later. Don’t worry.

Something you should know about my mother: she is the mother of all mothers. She is the definition of a mother. She can’t help it — she mothers everyone she encounters. When I was in high school, she went back to college and came home with a foreign exchange student who was far away from home and needed a family. When we go to parties, she immediately makes friends with the children and holds babies. Even fussy babies — who don’t like anyone except their own mother — like my mother. It’s like they can tell. She emanates nurturing. And she is fierce within this nurturing.

Which is all to say that she walked into the doctor’s office and demanded someone speak to us and explain what was going on. We didn’t fault the receptionist who called, she explained, but we needed someone with a medical background to explain and we would not be waiting two weeks to do the biopsy. She looked in my direction as she said this, as if to ask how can you make her wait with this hanging over her head?

The doctor was in the hospital performing surgery that day and we couldn’t be helped. Here is one moment in which I found incredible luck in the midst of the worst moments of my life: my dad is also a surgeon who worked in the same hospital system I was being treated in. My mom called my dad and told him about the call and the biopsy and the two-week waiting period and an hour later, we had an appointment for the biopsy to be performed just a few days later.

Let me stop for a second. I know how incredibly fortunate I was even in an unfortunate situation. Yeah, it sucks that I had cancer. But I also had a supportive family and a dad who had the connections to make the situation easier for me. I had health insurance. I was able to quit my job and live with my parents and focus on getting better. I was so mind-blowingly lucky while at the same time, totally unlucky. My heart aches for the people who didn’t have these things. I’m sorry. I’m so sorry.

Anyway. A few days later, after repeated assurances from my mom and dad and boyfriend and sisters and brother that everything was going to be fine, my mom and I went to the University of Arizona Cancer Center for my biopsy appointment. We checked in at the front desk and were handed a restaurant-style pager that would buzz and light up when it was my turn to be seen by the doctor. I laughed at the absurdity of the pager. Was this Applebee’s or a cancer hospital?

We waited in a small examination room. I was mostly silent and my mom was looking anxiously in my direction. I don’t think she was sure if I was going to laugh or cry or scream. Honestly, there was an equal chance of each.

My doctor, Dr. G., was a man around my dad’s age. They knew each other from working in the same hospital system and my dad trusted him completely which set me as much at ease as was possible. Dr. G. had an easy, affable way about him. He shook my hand and my mother’s when he walked in and introduced himself. He pulled up a stool and sat in front of us. For a moment, he joked about my dad and despite myself, I laughed. Then his face turned serious. I watched him closely, for any hint of my possible diagnosis.

“I’m going to cut straight to the point. With what we saw in the ultrasound, the odds are still in your favor,” he said. My mother squeezed my hand. “There is a small tumor on your thyroid but there’s a 70% chance that it’s benign and a 30% chance that it’s malignant.”

“So, 30% chance I have cancer,” I said.

“Yes,” he said. Even in that moment, I appreciated his straightforwardness. He didn’t dance around the numbers. He laid them in front of me and explained the science behind them.

“So, what we’re going to do next is biopsy the tumor. It’ll be easy and not exactly painful but just a little uncomfortable,” he said. I waved this off. I didn’t care if it hurt. I just wanted to know.

“I’m going to go prep the room and the nurse will bring you in in just a moment,” he said. He started to rise from his stool then sat back down.

“Fortesa, even if it is cancer, it’s going to be okay. You’re young and otherwise healthy and there’s a less than 5% chance that this could kill you in your lifetime. You’re going to get married and have children and grow old. You’re going to have a full and long life,” he said.

Until that moment, I had been stoic, listening and holding my face as close to neutral as possible. But when he said that, something inside me cracked open. I tried to hold it in but I couldn’t. I sobbed, holding my face in my hands. Dr. G. handed me a tissue box.

“I’m so sorry,” he said. “Your dad is going to kill me for making his girl cry.”

I cried because, before that moment, it had never occurred to me that it was possible that I wouldn’t get to get married and have children and grow old and have a full and long life. It had never crossed my mind that there was even a less than 5% chance that I would die young, before I could live the life I had dreamt of. I cried because suddenly, I felt unsafe in my own body. I cried because my mother was sitting next to me, squeezing my hand and crying herself.

“It’s okay,” I said, shaking my head. “It’s okay. We’re okay.”

After handing us tissues and offering assurances, Dr. G. left, closing the door behind him.

I stared straight ahead, my mother’s hand still holding mine. In my peripheral vision, I could see her looking at me.

“Don’t look at me,” I spat. “Don’t. Do not look at me. Please. Please don’t.”

So she didn’t. We both looked in different directions and cried and held each other’s hands. I couldn’t tell her then what I know now: I couldn’t bear to see the fear in her eyes. I couldn’t bear to see my own terror reflected back at me. It would be too real.

A few minutes later, we were lead to the room where the biopsy would take place. It was like any hospital room – obnoxiously fluorescent and sterile and terrifying. In the middle of the room, there was a bed. Near the door, there was a curtain. Behind the curtain, there was a chair. The nurse addressed my mother as Dr. G. scrubbed his hands in the sink.

“Do you want to sit behind the curtain? Some people don’t like to see it,” she said.

I answered for my mother because I knew she would want to be supportive and sit near me and I also knew that a mother shouldn’t have to watch a needle be stuck into her daughter’s potentially cancerous neck.

“Yes,” I said. “She’ll go behind the curtain.”

The nurse and my mom looked at me.

“You’re squeamish,” I said. “Go. I’ll be fine.”

She sat behind the curtain and the nurse drew it close then instructed me to lay on the bed. She swabbed my neck clean and told me which way to turn my head. Dr. G. told me what he was going to do and what it was going to feel like. I nodded and swallowed and then he gently pushed a needle into my neck. I didn’t flinch. It didn’t take long. Once it was over, the nurse looked at me.

“I’ve never seen someone not react like that,” she said. “Usually people cry or at least yell out a little,” she said.

“She’s a tough one,” Dr. G. said.

We had to wait a week for the results. In that week, we went to Los Angeles to celebrate Thanksgiving at my older sister’s house. I ducked in and out of festivities, crying in the bathroom and fixing my makeup. Everyone was saying to have hope, but I had already lost mine. Even though the odds were in my favor, I had known from the moment I got the call about the biopsy that I had cancer. I felt it, in my bones or heart or wherever you feel things that other people are scared of knowing.

Dr. G. called me himself. He told me I had papillary thyroid carcinoma and that he suggested a thyroidectomy (surgery to remove the thyroid). He said if I agreed with his plan, he would schedule the surgery for as soon as possible. He had already spoken to my dad and they’d decided on the plan. “Schedule it,” I said. “Let’s just do it.”

And we did. And then, six weeks later, when there were still signs of cancer, there was another surgery – this time, a neck dissection. (Isn’t that the grossest name?) And then, six weeks later, when there were still signs of cancer, there was a round of radiation. And then, three months later, I was cleared. I was cancer-free. I would have check-ups every 6 months for the next few years, then every year for 10 years and on and on. I would always need to be monitored and I would have to take a thyroid hormone replacement every morning but odds are, I would live.

I’m still trying to figure out what my life is like now. I’ve been cancer-free for almost a year now and my life has changed just as drastically as it did when I was diagnosed. I’m in graduate school. I have a job. I’m healthy and most days, I’m happy. But there are still the scars: the one laced around my neck and the invisible ones. In the invisible: gone are my sense of safety, my belief that the universe is an orderly and predictable place, my unflinching trust that I know what’s going on in my own body.

Life as a 20-something with a life-altering illness is the opposite of what it’s like without one. Before, I was carefree and reckless and confident and sure that my life would unfold the way I expected it to. Now, depending on your point of view, you could call me wiser or more damaged. But either way, this is my new normal. And, as I mentally prepare myself for my next 6-month checkup and try to quell the anxiety that flares when it approaches, I know this: my life has been altered by this illness but it has not been swallowed by it.