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Why I Went From 'Cancer Survivor' to Feeling Like a Cancer Patient

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I have a difficult relationship with the word, especially as it relates to cancer. Yes, I had cancer. Yes, I am now cancer-free. I wish it were that simple. According to The Oxford Dictionary, a survivor is a person who survives, especially a person remaining alive after an event in which others have died. By definition, I am a survivor but I have long had a tough time identifying myself as one.

Melanoma. Skin cancer.

When people find out I had melanoma, it usually goes one of two ways: they either are genuinely concerned and ask if I’m OK now or they respond with, “Oh, it was just skin cancer. My (insert friend, uncle, neighbor, second cousin’s first grade pen pal here) had that, too.” Many people hear that it was skin cancer and dismiss it as though it wasn’t a real cancer. There are many types of skin cancer and, unless you’re diagnosed with an advanced stage, it’s true that treatment usually does not involve chemotherapy or another lengthy, painful form of treatment.

This is the very same reason I struggle with identifying as a survivor. I was fortunate enough to discover my melanoma early and was able to be treated with outpatient therapy. I feel deeply for the people who have been through chemotherapy and medical trials, people who have lost their hair or their breasts, people who have been fighting for months or years to hear they’re in remission or their cancer is cured. I don’t ever want my identifying as a survivor to be viewed as me putting my treatment and journey on the same level as anyone else’s. It hurts me to think that calling myself a survivor could be perceived as diminishing someone else’s fight, strength and bravery. Yet, having “just skin cancer” does not not mean it wasn’t emotional, painful and terrifying for myself, my family and my friends. Why do people feel the need to compare our stories, our struggles, our suffering, our strength, our survival?

Skin cancer. Cancer.

Skin cancer is cancer. Melanoma might be the most treatable form of skin cancer but it’s also the deadliest. If you don’t believe me, find yourself a melanoma pamphlet. When I went in for a surgery consultation, they sent me home with a pamphlet of my own. I was living in Chicago at the time, a six hour drive from my family. I had always been a pretty healthy person and had never had a significant surgery. When I’m scared, I like to research what I’m afraid of. Knowledge is power for me. So I was all alone in my studio apartment when I opened up that pamphlet, hoping to find something to make me feel comforted or at least encouraged. The very first line read: “Melanoma is the deadliest form of skin cancer.” I promptly burst into tears and hid the pamphlet under a pile of books. (The pamphlet does get around to saying it is also the most treatable when found early. If you write medical pamphlets, I recommend moving that sentence toward the top.)

Less than two weeks after my diagnosis, I was in surgery. To this day, I think I was still in shock. Due to the rapid rate of growth of my melanoma, the oncologist wanted to remove and test my lymph nodes as well to ensure the cancer hadn’t spread. This meant they needed to find which lymph nodes my blood traveled to from the site of the melanoma. This is done by an extremely painful process called lymph node tracing. You have to lie completely still while a doctor injects a dye around the site of the cancer, then allow the dye to travel through your veins. The injections are painful enough (I had about six) but the dye creates a burning sensation as it moves through your body. After the dye has made its journey, the doctor takes a series of photographs to determine which lymph nodes need to be tested. My melanoma was located in my right shoulder so they ended up needing to test lymph nodes in my neck and under my right arm. This meant, in addition to removing the cancer, they needed to make two additional incisions during the same surgery for the lymph node testing.

While the lymph node tracing and surgery meant a 10 hour day at the hospital, the worst part came in the weeks after. My family drove to Chicago for the surgery and to help me in the days after, but they were only able to stay through the weekend. Due to the location of my incisions, I was unable to return to work for a week and then only half days after that. I didn’t have a car in Chicago and riding the L train was difficult because, unless a rare seat was open, holding myself upright while standing caused pain in the area of my incisions. I was on Vicodin for pain which we found out my body didn’t tolerate well. I would get so nauseous from taking it that I couldn’t sit up without getting sick. My doctor offered to prescribe an alternate painkiller but it took two days to find someone available to get it from my pharmacist. I had only lived in Chicago for a short time so I didn’t know any of my neighbors, had only made a few friends and had even fewer friends who lived close enough to be of real assistance.

Although my cancer was gone, my oncologist had prescribed skin checks to be performed every three months for five years due to the rate my cancer had been growing. My apartment lease was also expiring the day of my first post-cancer skin check and I had no idea what to expect. I couldn’t imagine going through surgery again without my family around to help me so I made the decision to move closer to home. This was one of the hardest decisions I’ve ever made because I felt like I was giving up both a dream and my independence. I had always wanted to live in Chicago and was trying to work my way up in a professional sports organization while completing my master’s degree in sport management. Although I believed (and still do) that moving was the right decision, I struggled with it for months.

Back home, I felt isolated and directionless. I had my family but not the social life I needed. All of my closest friends lived anywhere from an hour and a half to six hours away. I was still attending graduate school online but felt defeated after receiving rejection upon rejection from jobs related to my field.

At my first skin check, my doctor found more irregular moles that needed to be removed and biopsied. While they ended up not being cancerous, they were found to be moderately atypical. Due to their size, I had to have another, more minor surgery, to remove the two spots on and under my right breast. This time, I had a reaction to the stitches. My skin was so irritated from the sutures that the incision wasn’t healing and ended up splitting open in the middle. Three and a half years later, you can still see every line from where the stitches were. Since then, I’ve had three additional surgeries: two on my stomach and another on my right breast. In four years, I’ve only had one skin check where nothing had to be removed or biopsied.

I am so incredibly thankful that my cancer has not returned but at times, I feel completely helpless. I wear long sleeves whenever possible, I wear sunscreen like moisturizer and I have hats for every type of weather you can conceive of. There is no explanation for why my body continues to grow and develop atypical moles. I developed severe anxiety around doctor’s visits. It became more common than not for me to start crying when my doctor came into the room. One time I cried for an entire week before my upcoming appointment. I was sure my cancer had returned and that I was dying. I no longer felt like a survivor. I had been cancer free for three years but I still felt trapped, a victim of my own body. I felt like a cancer patient.

I didn’t realize it right away but I had become extremely depressed. I had struggled with depression in the past but this was different. It had happened so gradually as I simultaneously dealt with the emotions of the melanoma that the symptoms snuck up on me. I felt like a burden to my family. I constantly felt guilty over the perception of being a bad friend. I felt unattractive and unlovable as a result of the scarring from my procedures. I ate compulsively to numb my feelings and gained significant weight, leading to more feelings of inadequacy. I hated myself. I began seeing a therapist who helped me deal with the emotions I didn’t even realize I was feeling. She helped me heal with my self perceptions and self worth.

I’m not writing this so you feel sorry for me. To the contrary, I’d be horrified if you pitied me. I still struggle some days but I now recognize my strength. I still have anxiety before my skin checks but I no longer cry at the appointments. I still have times I feel like a cancer patient but I no longer feel alone. I still feel lost at times but I know more than ever who I am.

I am a daughter and a sister.

I am a good friend.

I am a youth worker.

I am an animal lover.

I am a writer.

I am a survivor.

Follow this journey on Jenn Patrice.

Lead photo courtesy of Pexels

Originally published: April 13, 2019
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