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THE AGS BLOG

Let’s Talk about Cancer: Support System

Amandarose AGS Photo Art Ocular Melanoma

Trauma was never meant to be experienced alone. There are so many possible emotional, mental, and physical ways to spiral; it’s easy to lost hope. Having friends and family hold your hand through each step of the way is critical. My support system helped me see that the glass was half full and not half empty.

If you don’t know, I was diagnosed with Ocular Melanoma at 26 years old. Ocular Melanoma is a rare form of eye cancer, and those that are diagnosed with it typically have a 50% chance of it metastasizing within five years. If it doesn’t spread to the rest of your body, you still carry the risk of losing your eye, becoming partially blinded, or develop a drooping eye. I’m incredibly fortunate: I don’t have a focal point in my left eye, but I am also cancer free.

The following list of people does not even begin to encompass the number of people that have supported me in my journey. The words I will write will not be enough. The tears that may fall as I write them will not express the extent of my gratitude. In short, those that chose to stand by my side truly helped bear the burden of cancer. I could not have taken each step without them by my side.

Andrea

Andrea is my best friend from the East coast since college. We were both touched with cancer (she had cervical cancer), and we are still incredibly close despite living on opposite sides of the country. After my diagnosis, I quit my job to focus on the treatment and surgery, which meant that I had no money to pay for parking or buy food with. Still in disbelief, I didn’t feel like I was in need. “I am 26 years old,” I would tell myself. “I’m not dying or anything.” Andrea rallied some friends and organized a huge fundraiser for me in Scranton, Pennsylvania.

I remember walking into the restaurant, the one that I used to work at years ago, and gape in awe at the fiesta decorations and all the people that filled the room. People that I hadn’t seen in years showed up. All my friends, my parent’s friends, my brother’s friends, mentors, people I haven’t seen for ten to fifteen years- they were all there. I remember standing to give a speech and felt a wave of emotions. How do you express thank you to a lifetime of people in one room? They showed up because they wanted to help me live.

Jonathan’s family

Here are some key characters: there’s Jonathan, my wonderful boyfriend (more on him later). There’s his sister, Kate, and his parents, Tom and Lisa. Tom and Lisa offered their home to me and my family. I moved to West Coast, but when I received my diagnosis, we decided to move back to Philadelphia to get the best doctors. Tom and Lisa immediately offered for us to live there and for my parents to visit. They were always willing to have an open door.

Someone may think that it may be awkward. Who does laundry? Should I have helped with the dishes? But we were already family. We had family dinners every night and sat and talked. In this time, I was extremely cautious of what I ate. I always asked myself: was my cancer caused by food? And Tom and Lisa would help me be extremely food conscious. They never complained about making me my own plate.

Jonathan

When I first got the phone call, I was getting on the plane to fly from the East coast to the West coast. Jonathan immediately started with “Don’t freak out, don’t get worried because you don’t know what it is. Let’s just focus on the facts first.” His logic was my anchor during the flight. After we talked to doctors and saw a specialist, he immediately quit his job and moved back to the East Coast together. We had only been together for a year and a half, yet he quit his job, packed up the house, and moved us to Philadelphia. He uprooted his life for mine. I will never find the words to thank him for that.

After my surgery, I had a radioactive plaque over my eye. I wasn’t supposed to be around anyone for forty eight hours, but Jonathan didn’t want to leave my side. We watched a movie in the hotel room. When I had to recover from surgery, he brought me on slow walks in the winter so I wouldn’t go stir crazy. When I needed to eat healthier but simultaneously craved chocolate chip cookies, he made me a high protein vegan chocolate chip cookie. Each cookie had 20 grams of protein, and they were one of the most terrible cookies on earth. But because they were the closest thing to chocolate chip cookies, and because Jonathan made them for me, I finished every single one. His love is faithful. He anchors my emotions. He helps me have perspective and be grateful.

Geno

My best friend, my brother, my “ride or die”. Growing up, Geno knew he could depend on me. After my diagnosis, there was an immediate role switch. I no longer had to be the responsible one. I didn’t have to have everything on the checklist prepared. Instead, he chose to be the strong one.

In this time frame, he began to become more open with me. Brothers and sisters say I love you, but we meant it in a way where each conversation may be our last. One time Geno and I had a fight and we hung up on each other out of anger. It makes me tear up remembering that he was always the first one to call me back.

Dad

I am a daddy’s girl through and through. Whenever my dad talks to me, he brings me to a place of being a little girl again. When I was going through this experience, my dad brought so much comfort in every conversation. He made it seem like it’s okay to not be an adult for a second. He would help me feel scared if I was scared, or feel angry if I was angry. My dad allowed me to be a child, to release those emotions. Most of all, he gave me permission to release some of those burdens. I will always be his baby girl.

Mom

Where Jonathan challenges my emotions by grounding them in logic, and my dad holds my emotions, my mom mirrors them. There’s something intuitive about her: if I’m scared, she’s scared. If I feel confident, she feels confident. She just knows me so well, and she constantly supported me by helping me feel like I’m not alone.

And she showed up to everything. Drop of the hat, she would fly from the east Coast to the West coast. She showed up for scans, my MRI, my follow up appointments- everything. Sometimes I think about how incredibly scary that experience was for her; what was it like for her to live with the idea of her only daughter having cancer? But I know that despite all her fears, she was with me. And I could not have asked for anything more.

Summary

Having a support system through a trauma like cancer is critical. I believe everyone struggling should reach out or have a list of names. There’s something about knowing that even if you don’t want to fight, they’ll fight for you. They’ll hold your hand when you feel weak. They’ll be there with open arms if you need comfort. And, above all, they are hoping with you.

Friends, it is time for me to give back: I am teaming up with Cyclebar on Memorial Day weekend for an Ocular Melanoma Fundraiser! I would love if YOU would come. Please join us in a $30 donation for a class, raffle, and more!

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