The Aftermath: Nobody Told Me This Part Would Hurt Too

“Well, good news is you don’t have COVID; bad news is, it looks like you have lymphoma – so we’re going to have to admit you.” I was 23 years old, lying in my local ER department, fighting to breathe, in November of 2020 when the ER nurse told me this. After a full month in the hospital, we confirmed I had Diffuse Mediastinal Large B-Cell Non-Hodgkins Lymphoma. This fast-growing cancer had spread out over my heart, lungs, and bronchial tube – squeezing organs that should never be squeezed – making me feel like I was being crushed under a slab of concrete. This aggressive cancer called for an aggressive emergency chemotherapy treatment course. Six arduous and isolating months later, I was spit out onto the other side of cancer. Once treatment ended, I felt extremely lost. Meanwhile, everyone around me at the time seemed to think I would just snap back into my pre-cancer life. The funny thing about trauma, though, is that it continues well beyond active treatment.

It was almost as if ringing the bell at the end of active treatment was the signal to my nervous system to open the flood gates for all the unprocessed trauma from this experience. I had been given a rigorous treatment schedule and had a clear sense of purpose: to get through treatment. I had a great medical team, a dedicated boyfriend and his loving family, and my friends to support me. However, the physical, emotional, and mental violence that ensued was unlike anything I had ever felt before.

The physical struggles of active treatment were visible to just about everyone: I lost all my hair; the chemotherapy infusion gave me an all over orangish-grey hue; I struggled to hold a conversation thanks to the infamous “chemo brain;” and I was unable to move around very well due to the location and impact of my mass. I looked sick. Some of my more latent experiences included bone and full-body nerve pain; it felt as if I had no skin and my nerves were exposed to the elements. It felt as if I were being cooked from the inside out.

After active treatment, the pain had manifested in other ways. I had debilitating nausea and struggled to eat or drink; my muscles had atrophied over the course of treatment, and I was so incredibly weak; all my nails were breaking off at the cuticle; my eyelashes were growing back but inward toward my eyes so I had to tweeze them out – just absolute chaos.

Mentally, things were rough. I was having panic attacks multiple times daily. Depression was destroying me. My hormones were wreaking havoc on my system due to the induced menopause I was in. My brain would not shut off, I couldn’t sleep. My nervous system was shot and I would constantly find myself stuck in fight, flight, or freeze states.

Emotionally, I was wrecked. I was crying every day. When trying to unpack my emotions, I would refer to the collective experience as this massive and ominous storm that constantly loomed overhead because it felt so overwhelming. I was afraid to feel all the emotional pain that was demanding to be felt. I did not have words for the horribly visceral feelings that were devastating my quality of life. I was desperate for rest and relief, and I was struggling to find it.

I was approaching 25 and didn’t recognize this version of myself. To make matters worse, the minute I was out of active treatment, long term disability insurance “nurses” were calling me weekly to determine if my reasons for not returning to work yet were valid or not. They determined my reasons were not valid and I had to return to work. I had previously been a confident driver. Reacquainting myself with the roads after treatment was shockingly difficult as this task immediately coupled itself with my newfound anxieties. During treatment, I was lucky enough to not have to drive since my awe-inspiring boyfriend had left his full-time job to take care of me and later, help me relearn how to drive. I had also been absolutely terrified of contracting the COVID-19 virus. I had not left the house for seven months for anything other than in-patient treatment and various doctor appointments. So, returning to work was much more than just returning to routine. I would drive to my office with an emesis bag in my lap, white-knuckling the steering wheel, and crying into my KN95 face mask — only to return home to an ever-growing stack of medical bills.

My way of making sense of all the medical bills looked like how cheesy crime TV shows try to solve murders – a version of organized chaos with an excessive amount of office supplies. We thrifted filing cabinets and converted the second bedroom in our apartment into the spot to keep all of “my cancer stuff.” I’ve spent countless hours on the phone with the hospital’s billing department, my insurance company, a social worker I had been assigned from the cancer unit, and long-term disability nurses — sometimes all at once in conference calls. I was simultaneously trying to sort out medical bills and legal documents from a car accident I had been involved in almost two years prior when my vehicle was struck at an intersection while I was on my way to work. I was getting multiple calls a day from various collection agencies, often interrupting my other phone calls. Essentially, life picked right back up, and I was not in any shape to start running with it again. This whole time, my cognition was hanging on by a thread – things weren’t going great. I felt painfully vulnerable, fragile, and hopeless.

My post-treatment life became more complex and unpredictable with each passing day and rivaled the challenges of treatment itself. I got the same, “See you in 3 months!” line from my medical team that almost all AYA survivors unfortunately receive. I felt as if I had been dropped off on a deserted island and everyone around me expected me to be grateful and happy. Of course, no one specific doctor can advise on side effects that arise after active treatment. So as far as medical support goes, I was feeling alone.

I was trying everything to get out of the darkness I was in. Namely, I was seeing three different therapists regularly: one for EMDR, one for intensive outpatient group therapy, and one for talk therapy and medicine management. I was doing Reiki, crystal healing sessions, and guided yoga meditations. I was consulting a nutritionist to help me start eating and drinking again. I was meeting with fertility specialists to see if my body would ever come out of menopause. I was also going to physical therapy twice weekly. Anything and everything I could do, I was trying. Next thing I knew, I was 26 but still felt like that 23-year-old in the ER being told I have cancer. The grief I had been trying to process felt insurmountable, like a mountain I couldn’t move. There wasn’t one single thing that changed my life; however, the collective support of everything, although glacially-paced, made a noticeable difference for me over the years.

Now, I’m 28, and have worked tirelessly to grow into the person I am now. I’ve come to accept that the trauma of diagnosis, treatment, and survivorship, will always be part of me. Cancer catapulted me into a deeper self, where I chose reflection over ruin – growing into a maturity most twenty-somethings have yet to meet. In that space, introspection became both my refuge and my mirror. I’ve found ways to breathe through pain and talk through fear. I’ve found my voice, my sense of self, my inner strength and resilience. My dedicated boyfriend has become my doting husband. I’ve nurtured new, meaningful relationships and let go of toxic ones. I’ve experienced so many more moments of clarity than of chaos.

In a way, my cancer forced a kind of rebirth. This has been a laborious journey but a worthy one. I have descended into the darkest corners of my own personal hell – and though I didn’t come out unscathed, I’ve uncovered the strongest, truest version of myself and had the privilege of getting to know her. There’s a soulful sense of pride I feel when I hit a rough patch only to witness the substantial growth that I’ve worked so hard to foster, flourish before my eyes. Healing, I’ve learned, isn’t always loud. It lives in the small victories – the quiet moments of peace, the fragile balance I fight to keep, and the steady, unshakable love that surrounds me when I need it most. Things are not necessarily easier now, but they are different. My twenties will forever be marked by cancer, but I’m so proud of how I have chosen to navigate through these challenges.