Cancer is Not My Identity

Life after cancer isn’t what I, or many, expect it to be like. Like a lot of others, it’s believed that once your treatment is over and you are disease-free, your life will go back to how it once was. But that isn’t the case. In my case, it feels as if I’ve begun a new and different life. It can be a renewal for some, but for me, my life has become more complex.

In 2019, I was diagnosed with Ewing Sarcoma, which was in my neck in my C1 and was classified as bone cancer. I began treatment in August and finished in May of 2020, going through both chemo and radiation. I went through many challenges that I wasn’t expecting and spent most of my time in the hospital, and if I wasn’t in the hospital, I was at home in my bed. I didn’t get to go out anywhere because of what the treatment was doing to my body. I had lung surgery to test a suspicious spot, which removed a wedge of my lung, and that spot has caused pain ever since. They tell me the pain is possibly from scar tissue and nerve damage. During treatment, I also developed mucositis, which caused sores in my throat that caused extreme pain, which made it impossible for me to eat and drink anything. Because of this, I had to have a feeding tube for a few months until the mucositis healed.

Ever since treatment ended, I have suffered from new diagnoses and illnesses. Fibromyalgia, Hypermobile Ehlers Danlos Syndrome, and Gastroparesis are among my new disabilities, along with worsening migraines, Occipital Neuralgia, and potentially Cervicogenic headaches. These illnesses, with my cancer-related side effects, have turned my life upside down. Because of the feeding tube that I had, we believe that is how the Gastroparesis happened. The vagus nerve runs through the same area where my feeding tube was inserted, and we think the nerve was damaged during either the surgery to insert the tube or its removal. These things that happened during treatment and the illnesses that I developed afterward were never something that I thought of when thinking of cancer or the treatment for it.

Unfortunately, I don’t feel like the same person. I should be saying that as someone who has aged and whose life has changed due to everyday things related to aging, but I get to say it because cancer came to me at 26 years old. Before I was diagnosed, I was in that period of life where you are trying to figure out who you are, what your purpose in life is, and how you can provide for yourself and others. I was trying to work on my health, as I’ve always struggled with my weight, and I was still in the process of treating my migraines, which I’ve always had. Cancer came as a shock to me, my family, and others in my life, but it took a while for me to process what was happening to me. I didn’t believe the treatment process would be too complex, based on seeing others undergo treatments that looked like a breeze. Sadly, people don’t always share the bad stuff that goes on through cancer treatment. My life was turned upside down five years ago and hasn’t gone back to normal since, and I don’t foresee what I call normal ever coming back.

I feel like someone who has aged rapidly. My life consists of medical appointments, new treatments, and medicines, and life revolves around when I might start feeling better and like the actual age that I am. I very much believe that people view me differently than before my cancer diagnosis. I was seen as an artistic person who had goals to succeed as a photographer, but now I’m known as the person who cancels plans, is always in pain, and acts like they are 80 years old by not leaving their home for days at a time. After switching careers, I may be known as a history, archaeology, artifact-loving nerd, but I’m still known as that person who had cancer at a young age and is going through side effects and new developments all the time. Someday, I would like to be seen separately from my medical ailments, but as someone with goals they are working towards, goals that involve preserving our history as humans and maybe someday discovering something new to teach us who we were and who we are meant to be.

I think that people treat others differently when they are diagnosed with cancer, during the treatments, and after cancer. When you are diagnosed, you will have a lot of people telling you they are sorry, they’ll be praying and thinking about you, and people telling you that you are too young to have cancer when you’re only in your twenties. You may have people come back into your life because they hear the word cancer, but those people might not stick around after your treatment is over because you no longer have the word cancer. Those people see your identity as someone who is exceptionally sick because cancer is a scary word, and it might not turn out very well for the person diagnosed.

I find it extremely difficult to explain to people how your identity has changed after cancer. It has proved that explaining how treatments change your body, how your mental health changes and you develop mental illnesses that you must fight for a long time afterward, and how your old self will be gone forever, and you might change into someone you never thought you would be. One of the things I struggle with the most is survivor guilt. When I see those diagnosed or those who have passed away that I knew or who had the same cancer as I had, it makes me wonder why me. Why did I survive, and they didn’t? What do I have more to offer our world than they did, and why is it so hard to work through these thoughts?

Along with all the other changes you go through, it is hard to explain to someone who hasn’t felt that pain or been with someone through the journey. I can only hope that someday, more awareness will be made of this side of cancer treatment. I hope that someday, others will understand the mental struggles and the health struggles that happen after all the treatments stop. Someday, I believe things will be more understood, along with more and better treatments for all cancer types.

I want my identity to be something I’ve created, not something that has happened to me. It would help if you weren’t seen for an illness you had no control over but as someone who has lived a life you’ve wanted. I am working towards a dream I have had for a long time. When you are possibly on the brink of death, your life changes in an instant. My dreams and my goals are important to me, and I am trying my best not to let disease and illness run my life, but it is one of the hardest things I have ever had to do. Cancer was never my identity before I was diagnosed, and it won’t be my cancer now; I won’t let it.