In June 2012, I was diagnosed with stage IIIc colorectal cancer, a rather uncommon diagnosis for a 19 year old female. Nearly a decade later, I can still recall the tensity in the room when the doctor delivered my results. Per my request, my mom joined me and my dad dialed in, as I had an ominous feeling that it was a life changing visit. The GI doctor laid out my colonoscopy images and all I heard was ‘malignant tumor’. From there, I got tunnel vision, my ears were ringing and I began debating internally if I heard him correctly. I interrupted the doctor, “Wait, do I have cancer?”
Within hours of my diagnosis, I was referred to the University of Chicago to meet my colorectal surgeon. Due to the severity of my prognosis, there was little time to waste. Within a week I had a chemo port placed, surgery scheduled to preserve my ovaries from radiation treatment and confirmed clinical trial eligibility with a brilliant team of specialty doctors. My treatment plan was aggressive: 6 weeks of continuous chemotherapy combined with 28 days of radiation, tumor removal with a 12-week recovery and chemotherapy biweekly for 2 months. After sharing my treatment plan, my oncologist had two suggestions: take a year off from college and remove any additional stressors from my life.
My doctor’s request was logical, but how does one eliminate stress when they’re digesting the fact that they have cancer? Every day a new worry came to mind – from being concerned about sharing my diagnosis with family and friends, to the financial burden my family was going to accrue in medical costs, concerns with my fertility diminishing to 20% post treatment, am I going to lose my hair, will the surgery be successful, is chemo brain real and if so – how will that impact my return to university, and let’s not forget googling “stage IIIC rectal cancer survival rate”.
Over the next 12 months, the hospital quickly became my second home and I became a bystander as I watched my body react to the rigorous treatment regimen. My mom was driving me to Chicago nearly daily for radiation treatments, with weekends off, while continuously hooked up to chemo. The oddest part of young adult cancer is being the youngest person in the infusion room, by at least three decades – so young, that other cancer patients are inquiring why you’re there. As the days progressed, I noticed changes in my body, from feeling weak and nauseous, to neuropathy in my hands and feet and aversion to certain foods. The combination of treatments was aggressive, but proved to shrink my tumor by a vast amount, aiding the surgery portion of my treatment.
After receiving genetic test results, it was discovered I have Lynch Syndrome, a genetic disorder that causes an increased risk of developing certain types of cancers, including an 80% chance of developing colorectal cancer before age 40. This discovery changed the initial surgery plan from removing the tumor and impacted lymph nodes to removing my entire colon and 5 feet of my small intestine, resulting in an ileostomy. A pivot I was unprepared for, but ready to accept in order to increase my chances of survival. My surgery was 12-hours long, performed robotically by my GI surgeon to remove my colon, and completed by my plastic surgeon to close the wound robotically, a first of its kind approach in the US. I spent 7 days in the ICU post-op, with my parents rotating nights to stay with me. Flowers flooded my hospital room and friends and family visited to show their support.
After a 12-week recovery, I was on my last leg of treatment. Only 4 chemotherapy infusions and 2 months left. My body was still weak from the chemo, radiation and surgery, but I was eager to complete my treatment regimen. On May 2, 2013, my doctor announced that I was NED – no evidence of disease. A triumph I celebrate annually, and consider both the most challenging and rewarding time of my life.
As a science major, I viewed my prognosis in two parts, constants and variables. The constants were my diagnosis and treatment regimen and the variables included detecting my genetic disorder, reactions to medications, long-term side effects and the outcome of treatment. I made a conscious decision to release both the constants and the variables, learning to ride the waves and coping as they roll in, as it was out of my control.
That’s not to say there were days or weeks where I fell into a mild depression (thanks google), got upset with my mom for burning the one food I was craving, regretted going to the store to be pushed in a wheelchair just to feel “normal,” only to have people stare at me or asked, why me?
By having a strong team of researchers and doctors, I was able to trust that their decisions were in my best interest. In fact, I trusted my GI surgeon so much that I didn’t meet my plastic surgeon until the day of my surgery – that’s largely due to overlapping schedules and longer-than-expected waiting rooms. Being able to form this trust early on provided me with a sense of safety and comfort. In conjunction, having a strong support network of family and friends gave me an outlet to share my worries, mock my disease, rotate care responsibilities and allowed me to simply be myself.
Other stress alleviators included networking with colorectal cancer advocacy groups, thus, creating a space for me to connect with people who are going through something similar, paving way for empathy, providing resources and local meetup opportunities. On days where it was hard to get out of bed, I relied on binge watching my favorite TV shows, journaling as a source of release and many inspirational TED talks.
When I reflect on my doctor’s advice, I realize he was urging me to create space in my life to increase my strength and reduce my stress response to my treatment. I was fortunate to have a safe home to mend in, reliable doctors, caring nurses, and a large support system to ease the daunting months ahead. When facing a life-impacting prognosis, stress is objectively unavoidable, especially given the many variables, but it’s the stress alleviators that pushed me to the finish line.