Cancer chaos

“However small the chance might be of striking luck; the chance is there. The chance has to be there.” 

– Roald Dahl, “Charlie and the Chocolate Factory”

Stage 4 cancer monopolized three years of my life in my mid-20s. There is a platitude that likens the process of the diagnosis, treatment and survivorship of cancer to that of a JOURNEY. So, forgive me, while I lean into just that — finding my golden ticket, like in “Charlie and the Chocolate Factory,” and taking a trip into the factory of oncological medicine — wreaking havoc on all health matters: mental, financial, emotional, spiritual and physical. 

I grew up a daydreamer. For as long as I can remember, I spent hours on end, thinking about the potential of my future. Just outside of Lexington, Kentucky, I had a normal, and even privileged childhood surrounded and supported by friends and family. Once I graduated college at 22, however, I felt ready to leave the safety net of home and start the whimsical new life I envisioned for myself in Nashville, Tennessee. 

My first year in Nashville was all about adjusting to life away from everything I once knew. I was balancing a full-time job while trying to make friends and build community. Times were simultaneously lonely and exciting. I really didn’t have the extra time to figure out what these strange, new lumps were growing on the side of my neck. 

I went into a walk-in clinic, expecting a simple explanation for the lumps. Turns out, there were multiple swelling “nodes” all down the side of my neck and through my collar bone. The provider said not to worry because I was young and healthy, but to stay in touch if things worsened or were the same in a week. OK, but I was worried. Call it a gut feeling, but I knew this wasn’t just going to resolve itself. I started having more symptoms: night sweats, pain and swelling all through the left side of my neck and back, on and off flu-like symptoms, and unexplainable shortness of breath. The lumps were growing, and I couldn’t stop touching them. I had a new fixation, like the book’s Violet Beauregarde and her incessant gum chewing. I called this provider over and over again, all month.  She told me I needed to wait it out longer. She finally agreed to do some blood work and ordered an ultrasound — the results were . . . swollen lymph nodes . . . we knew this for weeks. She recommended anxiety medication and a back massage. No joke. 

Over the next few weeks as my symptoms worsened, I kept calling the walk-in clinic, and continued to be told to wait it out. Eventually, the pain in my chest was so severe that breathing became a struggle. Only then did the walk-in clinic finally admit me to the hospital. I underwent a surgical lymph node biopsy, which confirmed a diagnosis: Hodgkin’s lymphoma. When the hospital doctor told me this, I asked him what was next. He said to get a referral from my primary care provider. Since I did not have a PCP, I called the walk-in clinic who let me know they were removing themselves from my care. “You have cancer, but this is not my problem,” was how I interpreted what I was hearing from these entrusted medical professionals.  

It was the biopsy surgeon, of all people, who finally got me in to see an oncologist. With more tests, I learned I had stage 4 cancer. At 23 years old, my stroke of luck, my very own golden ticket — full-blown, late-stage cancer, swollen up to a blueberry, like Violet Beauregarde, at a point of no return. 

Here I was, getting into my routine as a young adult, only to be swallowed by the chocolate river of all things cancer-related — surgical port placement, six months of ABVD chemo. 

Did I want kids? “I don’t know yet,” is apparently the wrong answer. I took a weekly fertility preservation shot, causing menopausal symptoms. My hair wasn’t just falling out, it was painful, the death of the follicles burned my scalp. Sickness and fatigue were like clockwork. This thrashing ride was just getting started. 

I was contemplating my mortality, facing the prospect of death at 23 years old. I was isolated. None of my peers could relate. “At least you get extra time off of work.” What? Because of cancer? I felt minimized. I was also deeply insecure about my body image: no hair, puffy face from constant steroids; I couldn’t look at myself. I felt like I was losing my mind. Will I die? How much time do I even have left? What other misery do I have coming for me? I felt like the person I was before all of this was gone. I had bills coming in left and right. I exhausted my unpaid medical leave from work and went onto disability. At least I could pay COBRA premiums to keep my health insurance. All I had to do was pay what equaled double my rent each month, while still paying my rent.  

The chocolate river was endless. Every time I thought I could get my head above the flowing mass, I would get knocked down again by another chemo treatment, another bill, another well-intended loved one saying the wrong thing. I was trapped; the only way out was through, I guess. 

Six months of chemo in the books. Then what? That’s a good question. I felt entitled to a normal life. When any little thing didn’t go my way, something went off in my brain, like the book’s spoiled Veruca Salt screaming, “I WANT IT NOW!” I felt bitter. My 20s were supposed to be a magical experience — not this horrifying ferry ride through this dark tunnel. I wanted to get my life back in order and for the chaos to end. 

The summer after I finished chemo, I was trying my best. I decided to take the LSAT, got to travel a little, and became interested in nutrition. Still though, I didn’t feel removed from what I went through. My supports receded since I was “all better.” While I was going through treatments, I was mentally dissociated, which didn’t allow for much emotional processing. Now that I was out of the woods, my brain would no longer let me rely on pure imagination. My emotions took over, and I sunk into a deep depression. I felt trapped by my apparent inability to control my own future no matter how much I tried. 

Six months later, I started to feel a glimmer of hope for my future again. That’s when, just like our friend Veruca Salt, life decided I was the bad egg anyway and threw me straight down the garbage shoot — a cancer relapse. This meant harsher treatments and a stem cell transplant. I really didn’t think things could get any worse. 

Prior to the transplant, a cardiothoracic surgeon had to cut through the bone and cartilage of my chest wall to perform yet another biopsy. I asked my oncologist if this procedure was even necessary. The doctor, who had performed the previous, less invasive biopsy, told me with tears in his eyes that the readings on my pathology report matched my initial cancer cells. My oncologist’s response was if there was a possibility to spare me from receiving near-lethal doses of chemo, then he needed to be sure. My body wouldn’t know how to produce blood ever again without the help of stem cells. My immune system would be eradicated. Medically speaking, my body was starting over as a newborn, needing to reacquire all its defenses. Hadn’t I been through enough? 

My relapse cancer care had at that point switched over to Vanderbilt University Medical Center, a new whole new big place to navigate. I did love my new oncologist and care team, but it felt like starting over. The transplant broke me. Having previous experience as a cancer patient did not prepare me for how sick, tormented, isolated and hopeless I would feel the second time around. I thought connecting with other young cancer survivors via a support group would help me with the isolation, but my relapse made me a taboo amongst them. I shared my story, and one girl said she almost didn’t come back to the group because of me. So much for feeling less isolated. Spending a month posttransplant in Critical Care didn’t feel as lonely as this. 

Through all of this, the constant daydreaming and dissociation had returned, and I was once again emotionally bereft. When the transplant was a success, I opted for a year of maintenance chemo; my hair started to grow back; and my energy levels increased. I found my love and passion for fitness; I got to use my voice through a documentary called “Vincible,” shedding light on the under-acknowledged young adult cancer experience. This opened the door for me to serve on the board of directors for the Young Adults with Cancer Program at Vanderbilt-Ingram Cancer Center. On this board, I was able to network with Survivor Fitness, where I now work as a trainer to help others who have walked a similar path to mine. Sounds like I was given the key to the chocolate factory, right? 

No. I had much to process — survivorship, the phase that lasts the rest of my life and healing from trauma in all senses of the word. It’s like I have been zapped and shrunk into a person 3 inches tall, a shell of who I once was, someone I don’t even recognize. Small, easily triggered by anything going “bump in the night,” whether it’s a mild cold or shortness of breath after exercise, I become convinced that the worst has come back to get me. No one listens. “You’re fine now,” they tell me. Maybe I am, but it feels more complicated than that. 

I’m almost 10 years out of my initial diagnosis. Whoever I was when I first entered the factory with my golden ticket, I came out a different person. I endured a stage 4 diagnosis, swelling up into a massive “blueberry.” I flowed down the thick, suffocating river of treatment and sickness with no foreseeable chance to come up for air. I chuted down to the rock bottom of relapse, entailing harsher treatments and deeper isolation. I shrunk down to a shell of an unheard, anxious person in survivorship. 

Cancer brought me to this factory, tested me, terrified me, confused me, leaving me with a sense of . . . perspective. Though my “journey” will never truly be over, I now have tremendous gratitude for the medical care I received from Vanderbilt, for the days I can appreciate my able body, and for my newfound passion to advocate for better resources for patients and survivors. I would have never said this during my three years of treatments, but this experience proved to be the impetus for me to discover the path my life needed to take. For others out there who received the hopelessness of a golden ticket, I’d want them to know that the perspective I’ve gained proved to be invaluable. I wouldn’t choose this experience, but I don’t know that I would change it either, as my chance of striking luck had to be there.