Why I Created a Documentary About Being Young With Cancer
I was diagnosed with breast cancer when I was 24 years old and quickly tossed onto the conveyor belt that is the US medical system, passed along from tests to appointments to treatments and more. I completed a six-month ACT cycle for chemo (or themo as we called it. No costume? No come!). After chemo, I had a double mastectomy with lymph node removal. I thought I was lucky because I had immediate reconstruction (no expanders!!) but the bigger win came when my lab results post-op showed no evidence of disease. After surgery I was treated to a nice little break before beginning radiation, using proton therapy.
Today, I’m nearly three years into hormone therapy. I took an unapproved break from Tamoxifen (it was ruining my life!) before making the switch to Lupron and Femara, which is proving to be a better fit for me. Last November I celebrated my fifth year cancer free and I feel very lucky to be navigating survivorship. I made it to 30!
During treatments, I felt really lonely. I had plenty of friends, but none of them (thankfully, I suppose) understood what I was going through. It wasn’t until I started connecting with other young adults that I found what I had been looking for. I was writing professionally at the time and was encouraged to write a book on my unique experience. But when a friend of mine quickly shut that down with, “It’s 2015! No one reads books anymore!” I set out with my iPhone to make a movie (yup, without any film experience.) It took a LOT longer than anticipated and was A LOT harder than expected. The easy part was making people fall in love with our stories. Once they saw topics surrounding diagnosis, treatments, survivorship, family planning and the unique challenges that arise when a young person faces an “old person’s” disease, the need for a support community was undeniable.
Creating VINCIBLE has been both the best and the worst for me, but mostly the best! At low points, it sucked me back into a world that I wanted to escape. My PTSD was triggered, and the emotional drain was mighty. But I’ve met the most incredible people. People I knew for minutes before sharing secrets I had never said out loud. People who shared the exact same feelings, emotions, experiences, fears and joys that I thought I was the only one who knew about. It gave me a chance to learn more about my experience through learning about other’s. I do want to stress that working in cancer after having cancer isn’t always easy, but I’ve learned skills to manage this much better than I did at first.
Making a documentary was a lot of work and the process is taking a LOT longer than I anticipated. Like most industries, connections are everything, and those can be hard to make if you aren’t in that world already. Things cost so much money too. Our film had a laughably small budget, essentially no budget from industry standards, so we had to crowdfund. It’s all doable, of course, it’s just no easy feat and the work does not stop once you have a movie either. Distribution is the current hill I’m navigating.
I ended up learning a lot about myself and my entire life story through creating VINCIBLE. I also got an intensive crash course in learning to accept my (new) physical self from seeing my body on the big screen as frequently as I have now! My favorite takeaway from the experience though will always be the way I learned how to sit with others during difficult moments without trying to fix anything. Just physically being there for someone is powerful. I don’t know all the answers now, but I know how to be there.
If you’re another individual diagnosed with cancer young, seek out peers. In our experience, finding people YOUR AGE has been even more beneficial than someone with the same cancer. Also, you must find your voice. You must speak up and be an advocate for yourself or find someone that you trust who can help you. It’s too easy to get swallowed up in the medical system. No matter where you are in your journey, try to always maintain a purpose in your life. Finally, there are grants and other forms of funding and free resources available to cancer patients. It takes some work on your end, but having your medical bills, tuition or even gym membership paid for can be a huge help.
One of my favorite quotes and life lessons is actually from The Fault in Our Stars, when John Greene writes, “That’s the thing about pain. It demands to be felt.” Emotions demand attention. Acknowledge yours and feel your feelings. That’s how we heal. Kayla Redig