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Brain CancerPatient StoriesPediatric Cancer

The Invisible and Visible Scars of Cancer

Teenagers often feel they are immune from cancer, says Ellen Chun, who was diagnosed with a rare brain cancer at age 18. Before her diagnosis she had many unexplained symptoms. Through cancer she learned to advocate for herself, an experience she shares to guide other young people facing cancer.
August 2020 Vol 6 No 4
Ellen Chun
Tustin, California
Ellen Chun

In the spring of 2018, I was diagnosed with a germinoma, a rare type of brain cancer. Before receiving the diagnosis, I struggled with an array of symptoms that ranged from nausea to drinking more than 20 liters of water a day. At that time, I was taking courses in organic chemistry and other tough science subjects, which may have added stress. In addition, I was constantly fatigued and depressed. The tumor itself caused adrenal and hormonal problems because it was pushing against my pituitary gland (the “motherboard” that sends signals to vital hormones).

When I was first diagnosed, it was difficult to swallow the truth that I had cancer. Yet through cancer, I have learned to be an advocate for myself, especially in front of doctors. My mother has taught me to be willing to ask questions forthrightly and not to be afraid to discuss any symptom, big or small.

Dealing with Chemo as a Teenager

I cried a lot, before the treatments, during, and after. I can vividly remember those years having a seemingly perfect, healthy body that I failed to appreciate. During this entire process, I felt as if I had been born into the wrong body. I was a young adult, only 18 years old, and had never considered the possibility of cancer. As a teenager, you often feel as if you have immunity from harm and pain. I did not know anyone my age who was going through the same experience of cancer.

During chemotherapy, as the drug solution slowly drips into the vein through the cannula, it has a stark color (typically red) and damages the taste buds (hence the metallic aftertaste). The worst part of chemotherapy is that you anticipate the pain—whether through nausea or fatigue. But there are other times when I felt numb to the pain. Although cancer changed my physical appearance, my mental state and thoughts are still my own.

It is funny how life can be more exhilarating when you have cancer. I feel more aware and more present in conversations than ever. Before starting chemo and radiation, I was anxious that I would not feel my normal self, and even feared that it would turn me into a weak baby.

I had my share of bad days with intense fatigue, but I also had moments when I felt energized and rejuvenated. To my surprise, I found that I could cope with my treatment, and even felt more alive and happier than before.

New Life After the Treatments

After finishing the chemotherapy and radiation treatments, I had issues with my memory and stuttering. I had speech therapy to try to improve my problems. At the outset after treatment, I would feel overstimulated and anxious while alone at the grocery store. Over time, I have discovered that each obstacle cancer has thrown in my way has only served to strengthen my resolve and outlook.

I still have issues with speaking on demand and with my short-term memory. But there are tools to aid in the recovery process. Speech therapy helped me regain my memory. I have a new profound sense of life, and how to live it after going through my treatments. I have learned the importance of my voice, and how it can make an impact. Learning from survivors, and in turn, facing my own experience, have empowered me to share my story with others.

The Value of Experience

As a young adult, I have encountered very few people who are educated about cancer. I hope to share my story with every person I meet to change the stigma against the disease. I have never been very open about my health issues, but now I liken myself to a book that people should read to broaden their knowledge and open their perspective.

I want to use my story to bring more understanding about the cancer process. There is a lot of sorrow and discouragement when you are first diagnosed; it is hard to find anything positive about your situation. Every individual’s experience with cancer is unique; this makes people’s stories even more valuable.

Cancer seems to keep taking something from you, but sometimes it gives you more than you ever anticipated. Despite having a difficult time, I have accepted that life will not go my way. Since accepting this, every struggle that followed has seemed small in comparison to the resilience and perspective I gained from my cancer treatments.

There are many misconceptions about cancer that once an individual’s treatment is over, the pain automatically ends. After my treatments, many of my friends were naturally curious about when I would return to school, and amid my exhaustion, it was hard to give a clear answer. When people would ask, “How are you?” or a grocery clerk would ask, “How’s school?” I felt too daunted to answer, and my mother would step in and explain my health condition.

My Truth

I have learned that the expectations of others can never be met, and that the best I can do is enough. Instead of dwelling on what I have lost, I stay humble and remember that recovery can take time.

Throughout my cancer journey, I have learned the importance of educating myself, advocating for myself, and speaking up.

I can easily descend in an endless spiral of feeling that I have lost hope. I can try to consult “Dr. Google” regarding my “what if’s,” but it only stirs more fear and anxiety.

Being around survivors has taught me that outlook is everything. My journey with cancer has shown me that I can face life’s ups and downs, and despite my physical limitations, I refuse to accept any mental or spiritual barriers.

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Last modified: September 8, 2020

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