How That C Word Rocked My World

by Ali Quilici CooperSurvivor, Brain Cancer, Grade 3 Anaplastic AstrocytomaApril 13, 2021View more posts from Ali Quilici Cooper

Ali wrote this at the end of 2015 right after she was diagnosed with brain cancer

Dear The Newly Diagnosed Young Adult,

It’s been just over three months to the day since I found out that I had a golf ball sized brain tumor in my right frontal lobe. Just about a month after that I found out that it was a grade 3 anaplastic astrocytoma, a very aggressive form of brain cancer. Last summer I was a normal, fun loving, mostly care-free 24 year old. I was working two jobs, trying to finish school and coaching the beautiful game of basketball.

Then the fall of 2015 came and my world will officially never be the same. My life and my body are no longer my own. My days that used to be filled with class, work and exercise are now monopolized by pills, doctor’s appointments and needle pricks. My body doesn’t feel like mine at all. I feel like I’m renting someone else’s for the time being. And on top of that, I am literally terrified for my life. I’m constantly thinking about the things I may never get to do that I never questioned before. Things like, get married, have babies, finally become an elementary school teacher, a successful basketball coach, or sit on a front porch when I’m 85 with my twin sister making fun of our husbands who are hopefully in worse shape than we are (come on, every woman hopes for that!). I’ve even been sad about missing things that no normal person would be sad about like going through menopause or have a serious, world shattering, heartbreak by loving a boy way more than I should – (every girl has at least one or two of those right?) But no, I may never get those experiences like every other girl my age. I feel a complete disconnect and like such an outcast to every person in my life who I once felt close to, not to mention the people I wasn’t close to.

When something like this happens to you, you get the widest variety of responses. Some people are genuinely mad for you. Some are sad for you. Some are over the top sad for you. Like way more sad than you’d even expect your own grandmother to be. Some try to make jokes. Some are literally speechless. I’ve learned that everyone responds and everyone grieves differently. And guess what! THAT’S OKAY! As long as their response doesn’t completely piss me off, I’m good with it.

Then there’s the people in my inner circle. The ones closest to me. I call them “my people”. I can’t imagine how this has been for them. When I was first diagnosed I don’t think it was nearly as hard for them as it was for me (understandably of course). But as time has gone on I think it’s gotten better for me (I won’t say EASIER because let’s be real, this doesn’t ever get EASY) and worse for “my people”. They just love me and they just want to help. No matter where they fall on the wide ranges of responses, most people, and especially “your people”, want absolutely nothing more than to feel like they’re helping. My family was over the top with suffocation of love in my normal life even before I found out I was sick. So getting a terminal illness diagnosis in my twenties has made them even more obsessed with showing me that they love me. And although it’s been frustrating at times I appreciate and love them more than anything and I know how beyond lucky I am to have them to lean on during this time.

Then there’s “my people” who aren’t related to me. That includes my boyfriend and my closest friends. For them it’s crazy (I can imagine) because this is something you usually just hear about. This happens to someone who you know, who knows someone, who’s related to someone else who has it. It doesn’t happen to you, your girlfriend or one of your best friends from high school. It doesn’t happen to someone you just saw last month at a concert who was dancing and drinking a beer. It doesn’t happen to someone younger than you. It doesn’t happen to your old co worker or that girl you knew in elementary school. It doesn’t happen to someone who’s “so healthy”. Well that’s wrong because it happened to me and I am all of those things. And for my friends I think that’s hard because it’s like a huge wake up call that just because we’re young, we are not invincible. That is probably almost harder to handle for a lot of people.

That was a lot of negative things about learning you have the ugly C word. Now here’s a few positives…
I have never once appreciated my life so much. I’ve never let the small stuff roll off my back like I do now. I appreciate the color of the sky and the beautiful flowers I see as I walk by on my way to my car every morning. I try not to get caught up on things like money or the outcome of a basketball game. I appreciate those closest to me (going back to “my people”). When something like this happens you find out who truly cares about you. It’s sad but true that some don’t care enough to stick around. And I’m totally okay with finding out who those people are now, rather than later. And along with finding out who doesn’t really care, you find out who does really care. I have had such an overwhelming amount of love and support shown to me from people I’ve known for years, people I’ve met a couple times or just once and even people who don’t even know me. (Thank you, social media.) It’s completely restored my faith in humanity. So many people are willing to go above and beyond just for a simple kind gesture like sending me a card or cooking me dinner. And the only words I have to describe that feeling is that I’m completely overwhelmed at how many people truly want to help. It’s been so refreshing to see the kindness. It’s like getting the answer to the age old question of “Who would actually come to my funeral if I died?” without actually being dead.

While I do appreciate life more than ever I am still so scared. I’m scared all the time. I’m scared about all the experiences I may never have. I’m scared of death. I’m scared to leave my family mourning for me. I’m scared I won’t ever make a positive impact on the world. I’m scared I’ll always just be “the girl who has/had cancer”. I’m scared remission may never be in my vocabulary. I’m scared that if I am lucky enough to get to remission that I’ll still always be afraid of cancer. I’ll never fully get away from it. Let’s just say hypothetically, I beat cancer. I transition from being a cancer patient to a cancer survivor… I will ALWAYS be terrified that it’s coming back to get me. What kind of life is that like to live? Well, I guess I’m ahead of myself now because first I have to actually get there. Here I go… continuing to fight like hell against the ugly C word that rocked my world.

From,
Someone who is just as shook up as you are

Want to hear Ali read her letter? Click here to sign up for Perkatory on Thursday, April 29th at 7:00pm ET!


All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.

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