I am a Zebra

*Content warning: eating disorders

As the child of a single parent, I was raised to be a strong, independent individual who wanted to be the best possible version of myself. In my attempt at perfectionism, I had illnesses – IBS, eating disorder, anxiety, body image and acceptance issues. Despite all of that, I believed I had the skill set to emotionally handle a cancer diagnosis – boy, was I wrong. When I went through chemotherapy, it was a process – step 1 (surgery), step 2 (a port), and step 3 (weekly chemotherapy). I viewed it in a strategic way – do the steps and then I am free of cancer. By the end of chemotherapy, I had lost so much of who I was that I realized very quickly that before cancer I was replaced by someone who was emotionally very different. Anorexia, for me, was a purposeful destruction of the physical form as a means to ultimately die. Cancer, on the other hand, was my body betraying me in an attempt to have cancer cells consume all of me – physically, mentally, and spiritually. I was prepared for the crying, whining, and pain but I was not prepared to go through the five stages of grief. For example, I tried to bargain with my cancer that if it’d go away, I would be nicer to myself, love myself more, and stop being so hard on myself (did I mention I was a high achiever with high standards?). I was also not prepared for the combination of emotions that came at the same time. My husband came into the bedroom one night, towards the end of chemotherapy in June 2023 and found me writhing on the bed in pain, screaming and crying in anger, fear, and sorrow. He asked me what was wrong, and I replied that everything hurt, and I could not sleep as I was so sad and angry at myself, cancer, and the world. Being able to separate emotions in those moments is incredibly hard as, for me, they were interconnected and, in a way, dependent on each other.

I have two graduate level degrees and am an avid reader and researcher so for me, getting cancer gave me the opportunity to focus on it, know it, and research it. That’s a double-edged sword though as too much information can be overwhelming and, because of that, I had stopped journaling (if I did not write about it, did I really experience it?). When my cancer recurred and I came to terms with it as a chronic illness and not a phase of life, I started to really know my cancer journey, the research, and innovations. If I were to look at the past 2.5+ years of my cancer journey, it would be in two parts – “Jen has cancer” and “Jen fights cancer”. My emotions were raw during chemotherapy and maintenance drug (2023-2024) but when my cancer returned in July 2024, I got mad and wanted to “scorch the earth” of cancer in my body. When that did not work, I got a second opinion, which corrected my cancer subtype diagnosis, did multiple surgeries, and on an oral treatment. This shift has changed my outlook, my emotions, and my future.

I grew up thinking that doctors had all the answers and to do as I was told. Through my journey, I have experienced misdiagnosis, allergic reactions to chemotherapy and related supplies, hospitalizations, a lot of undetected cancer discovered in surgery, temporary ileostomy, and more. Doctors do not have all the answers – how could they? They are human and are practicing medicine. Mistakes happen, which is why it’s important for patients to ask questions, advocate for themselves, and fight for survival.

Lastly, it’s easy to talk about cancer in a “I did this” or “I went through this” but for many of us, it is more than just us. For me, my cancer journey consisted of myself, husband, dogs, mother, sibling, grandmother, and in-laws. Their emotions and reactions all varied in the moment, but most were supportive and tried to understand. Some rarely reached out, others stopped talking to me about cancer as they could not handle me having cancer. Some were there until it was no longer emotionally comfortable and then stepped out for a bit only to return a day, week, or month later. We all process cancer differently. Mostly, I kept the hard parts to my husband and myself as most people don’t want to talk about the dark parts – death, dying, grieving, loss, and absence.

I am about to turn 44 years old – I was 41 when diagnosed with cancer and had probably had my cancer for years before it was discovered. Being a young adult, working full-time, and having adult responsibilities is hard but even more so with cancer. I worked throughout the 36 cycles of chemotherapy and 22 cycles of a maintenance drug. The only time I took off was for surgery, which I had to do. Cancer is hard on everyone but more so for those of us who, according to a lot of doctors, are too young for cancer. For the medical community, we are Zebras – unique, exotic and rare in the cancer world.