Voices on Cancer is an award-winning Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Julia Michelle Santiago is a professional costume designer with more than 20 years’ experience working with the film industry in Puerto Rico and abroad. In her early 40s, she was diagnosed with colon cancer. She is the founder of the Juliastrong Colon Cancer Awareness Foundation and is the colon cancer survivor spokesperson for the Coalición de Cáncer Colorectal de Puerto Rico. You can follow Julia on Facebook, Twitter, and Instagram.
My advocacy story
At around 4:30am on the morning of April 11, 2014, I posted this quote by Bob Marley on my Facebook page: “You never know how strong you are until being strong is the only choice you have.”
It was the morning of the biggest race I have ever signed up for, the San Juan Half Iron Man 70.3. This sporting event includes a 1.2-mile swim in open waters, followed by a 56-mile bike ride, and finally, a half marathon. I would race for a total of 70.3 miles.
So that quote was just a way to remind myself and my teammates that strength is a mental state and I was choosing to be strong that day. I have been training for close to 6 months, and that morning, the strength I needed was going to come from willpower and desire. My body was ready to race, and so was my mind.
It was a tough but great race! With another 1,500 athletes around me, I swam through murky waters, cycled through windy conditions, and ran through extreme humidity. None of this was able to take the big smile of satisfaction off my face. My smile was always there, between every breath, because I had my mind set to finish the race. It was such a happy day!
Just 5 months later, I found myself signed up for an even bigger race. But this was not a race I had chosen. And rather than finish this race, I had to fight to live through it. On October 18, 2014, at 45 years of age, I was diagnosed with colon cancer. When I was given this shocking news, I panicked. Then, I realized that what I had truly being preparing for during my Ironman training was to face and overcome cancer.
I spent 19 days in the hospital and was sent home after surgery to recover. Then, just 3 weeks later, I had to start chemotherapy for 6 months. I also had an ileostomy, which I had to manage for the next 9 months. An ileostomy is a surgery that connects the small intestine to the inside of the belly, and there is an opening connected to a small, external pouch to collect the waste.
It was a time to reflect and connect with my inner strength. Just as important, it was time to renew my faith in my ability to survive this situation. As soon as I regained some of my physical strength—maybe about a month into the chemotherapy—I took charge of my health and recovery by reading as much as I could about cancer, chronic illness, the immune system, and healing. I wanted to understand what I was going through and if there was anything I could have done to avoid it. But most importantly, I needed hope.
Practicing acceptance was first thing I did. I started meditating every morning. I looked for all kinds of meditation that dealt with healing, guilt, sorrow, grace, and more. I remember finding so much peace every time I sat down to meditate, and this truly helped me to go on with my day, every day of my recuperation, especially on the really bad and challenging days. Meditation during my recovery also helped me practice forgiveness of myself and helped me to let go of the stuff that haunted my mind.
I still practice meditation today. Meditation is a powerful tool that we all have access to, one that truly helps us to see our problems in life not as problems but as situations that we can take care of.
I also started reading more about eating healthy. I started to follow a more plant-based diet. Trying out these new recipes helped me feel healthier, and I actually started enjoying eating! Little by little, I began to feel stronger.
By the third month of chemotherapy, I began doing yoga. This is another powerful tool because it works your body, mind, and spirit.
That was also when I established my own foundation, the Juliastrong Colon Cancer Awareness Foundation. The foundation’s mission is simple. I want to raise colon cancer awareness and promote a positive, active lifestyle filled with self-love. Through my efforts on the foundation, I share the healing tools I gathered while I recovered from cancer treatment. These are tools that I still use every single day.
A year after I finished chemotherapy, in March 2017, I completed another half Ironman race. And this time I did it while thinking of all the other people out there with colon cancer. This time around, my training had not been as strenuous, but I did have the willpower to do it because being strong was my only choice.
Find your unique gifts
My first steps into advocacy were done to support my local Coalición de Cáncer Colorectal de Puerto Rico (Puerto Rico Colorectal Cancer Coalition). When Dr. Marcia Cruz invited me to become part of the coalition, I thought, "Why does she want me in there? I'm not a doctor.” So for the first year, I was very shy and didn’t contribute much. But as I spent more time with them, I grew to understand what it was all about. It was about getting the community together.
In the second year, I started realizing how my background could help them succeed. So I said to them, "We need to do advertising." I talked to a couple of friends I knew from my background in shooting commercials and film, and I talked to my good friend from an advertising agency. We all worked together to develop a campaign called "Cero Tabu." It means "no taboos." The point of this campaign was to make people aware of the dangers of colorectal cancer and to help them get screenings.
In another campaign for the coalition, I went to all these designers who I knew in Puerto Rico and abroad, including from New York, Venezuela, and Colombia. I told these artists, "Look, I want to create a collection of t-shirts, and, you know, just get inspired by what self-love is." A lot of them created art that envisioned what they saw about me as a cancer survivor. But they also created art based on what they felt in their heart. In the end, this resulted in a collection of t-shirts called the Strong Tee collection.
Advocating for other people with cancer is one of the ways that I practice self-healing and self-love. If you want to help others with cancer, think about the unique gifts that you have and how you can use them to support others. In return for your gifts, you may find that you help heal yourself.