Welcome to the Band of Ballers! In this series on A Ballsy Sense of Tumor (ABSOT), I’m turning over control to some other ballsy testicular cancer survivors and patients who have inspired me with their work in advocacy and awareness during and after their diagnosis. This month’s feature is all about Alex G. Duncan, who served as the inspiration for the Alex G. Duncan Foundation. Enjoy!
Alex was always a fighter, even before he was born. He was a high-risk pregnancy and doctors thought he would be premature…. if he survived. Instead, he made it beyond his initial due date and was a New Year’s Day baby. He was born visually impaired and with a cleft lip and palate, but he was our miracle.
When he had his first cleft palate surgery at three months old it was discovered that he had hypertension due to stenosis of his renal arteries. He immediately underwent surgery to bypass the stenosed artery and ultimately spent three weeks in the PICU at Albany Medical Center. Not knowing what the outcome would be, Alex was prayed over and baptized by three priests, ensuring his protection and giving us the first indication that he was truly in God’s hands.
For the next 10 years he had a regimen of three different medications given twice daily to control his blood pressure (BP). We had a portable BP machine to monitor his BP and we had to be careful about heat and over-exertion. At age 10 one of his kidneys had atrophied so much it had to be removed; and amazingly his blood pressure normalized so he no longer required medication.
Alex Was Always Determined to Succeed
Alex did not let his visual impairment prevent him from being an athlete. He played flag football and never missed a single practice or a game. One time, he broke his foot in a game but did not tell us about his injury for two weeks. He wrestled, ran track, and played goalball for the South Caroline School for the Deaf and Blind (SCSDB) and was named the Blind Male Athlete of the Year in 2014.
Alex attended schools in Niskayuna, NY, Boston, Spartanburg, SC, and finally New York City, where he passed the required Regents exams to graduate (a year earlier than we expected) in 2016. He attended a summer program in Manhattan and a program for the blind in Portland, ME. Five different times during his educational pursuits he was residential (only coming home for the weekends). He was healthy, active, and looking forward to continuing his education and securing a job.
In September 2018, while playing basketball with his cousins he was accidentally hit in the testicles with the basketball, causing him extreme pain.
When we examined him we discovered that his left testicle was larger than the other. He admitted it had been bothering him for a long time but he didn’t want to say anything. He was diagnosed with stage three testicular cancer. We were devastated. After all that he had gone through in his life, how could he now have cancer? Saying it wasn’t fair is too simple…it absolutely sucked. His oncologist indicated we could expect about 6 months, but then he said, “Knowing Alex, he will prove us wrong.”
He immediately had surgery then began four rounds of chemotherapy. However, after two rounds of chemo he developed a pulmonary embolism in his lung and pneumonia. He spent 13 days in the hospital overcoming a grave situation. At one point we were told that he may need to be intubated; and if that happened, he may not come out of it. But he did and completed chemotherapy. His numbers looked great and we thought he was in the clear, but the tumors returned. In March of 2019 he had a tumor removed from his neck.
On May 22, 2019, he went to Memorial Sloan Kettering in NYC for a very difficult but necessary surgery: Retroperitoneal lymph node dissection (RPLND). In addition, he had sections of his liver removed. During the surgery he went into heart failure and was brought to New York Presbyterian Hospital, where he spent two weeks in the ICU, going nine days without food or water. It was by far the worst challenge Alex faced and the most difficult time we had as a family. Three times we were told he may not pull through.
Yet he survived each time, baffling doctors and reminding us that it is God’s timing and Alex still has work to do.
Reflecting on Alex’s battle with testicular cancer, it is very easy to say “what if…?” What if he had told us sooner? What if we had known to ask him to do self-examinations regularly? We don’t know if it would have made a difference because the tumor he had was very aggressive and attacked his body with a vengeance. But, what if? Alex felt embarrassed or uncomfortable about telling us that he had pain in his testicles and one was larger than the other. That is the stigma that must be overcome. Boys and men must perform regular self-examinations, parents need to instill this in their boys, and they should never feel ashamed or embarrassed about it.
Throughout his life Alex had multiple surgeries to repair his cleft lip and palate, orthopedic surgery to correct a length discrepancy of his legs, eye surgery, and reconstructive surgery on his jaw. Overall, he had 27 surgeries, multiple scans, EKGs, MRIs, two blood transfusions, genetic testing, vision tests, and breathing tests. And through it all he never complained.
Alex was a gift to our family, providing humor and inspiration despite all of the challenges he faced.
During his battle with testicular cancer he continued to push himself, taking lessons in Japanese, learning how to play (and beat his dad) in Shogi (Japanese chess), and continuing to meet weekly with his therapist (who eventually made house visits because Alex’s health was declining), He spent this precious time writing letters to family members, telling them what loved about them, recalling memories, and how he would like each of them to carry on. He even reached out to encourage a young man his age who was also battling testicular cancer.
When Alex received a financial gift from a very close friend, his immediate response was to donate it. Instead, he decided that he wanted to help others that are battling like him, so we created the Alex G. Duncan Foundation for Fighting Testicular Cancer. In the past year, we have been able to give over $16K in comfort gifts and travel reimbursement to 10 recipients across the country. We strive to encourage and support young warriors battling this terrible disease, while promoting awareness during fundraising events.
Alex passed on April 14, 2021, at the age of 25, yet his legacy lives on in the foundation that he started.
He continues to be a source of inspiration, motivating Kelly Young of Kelly’s Boot Camp to start a “Dude Camp.” In Kelly’s words:
“Even though I was inspired to action, I was initially worried that I was too overwhelmed with my family and business at the time to start something new. However, later that very same day, a news piece was circulating about my high school friend’s son. Alex Duncan, 25 years old, was dying of testicular cancer, and people worldwide were donating their birthdays to him. I believe in signs. I act on them.
Alex Duncan never stopped fighting, learning, and growing. Despite battles and obstacles since birth, he had a power and presence that inspired others. If strangers worldwide could offer up their birthdays to Alex so he could celebrate his final months, I could start a Dude Camp program for men in our community. I saw a need for guys to connect, relieve stress, and add a few extra workouts. When this vision became connected to Alex, it became powerful.”
Kelly runs Dude Camp every April to coincide with Testicular Cancer Awareness month to honor Alex and fundraise for the foundation.
Be sure to connect with the Alex G. Duncan Foundation by visiting them at www.alexgduncanfoundation.org. Until next time, Carpe Scrotiem!
Know someone (or even yourself!) who is supporting TC awareness and would be willing to share their story? Drop their name, contact, and why they should be featured into this Google Form and I’ll reach out to them and/or you!
This post originally appeared on A Ballsy Sense of Tumor. It is republished with permission.