There Is Nothing More Gratifying In Life Than Making A Difference In People’s Lives And Paying It Forward
When endurance athlete Tom Hulsey visited his doctor on his 61st birthday in February 2015, he heard the words he didn’t expect to hear: he had prostate cancer. And like many men who feel embarrassed by this diagnosis, he shut down and shared the news only with immediate family. His closest reference point was his friend Bill who had recently died of the same cancer, and Tom was convinced and afraid that he’d share the same fate, which led him to a darker place emotionally and physically.
Adding to this “shame” and attack on his “manhood” was that Tom’s friends and family always viewed him as “Mr Fit and Healthy”, having competed in 9 IRONMAN® triathlons up to this point, and leading an active lifestyle: eating well, not smoking or drinking, and regularly exercising. However, it was a simple gesture from a nurse in hospital following surgery to remove his prostate that set him on a different course, out of the darkness he felt from his diagnosis and surgery: she placed a blue band on his wrist which contained the words “ZERO — The End of Prostate Cancer”.
ZERO (zerocancer.org) is the name of a US-based organisation with a mission to raise awareness of prostate cancer and help families impacted by prostate cancer, and also educate and advocate for research funding. Tom began a blog (tomhulsey.com) to share his cancer experience and also went to a ZERO Advocacy Summit in Washington, D.C., at which point he opened up about his prostate cancer diagnosis and journey and realized his feelings were the same as other men in the group.
Tom also confided in a close male friend who had experienced his own health issues, and who encouraged Tom to begin setting some goals to get beyond the difficult recovery days following surgery. Recalling the IRONMAN® mantra (“Anything is Possible”) Tom shifted his mindset from one which was “fixed” to one which enabled “growth”, which Tom now refers to as a “winning mindset”.
In addition to the surgery, Tom believes it’s this mindset shift that saved his life, and from which he set short, intermediate and long term goals — the first long term goals set were to compete in his 10th IRONMAN® and also walk his daughter down the aisle for her 2016 wedding — both of which he achieved.
Joining a support group and setting goals for himself allowed him to both focus and open up about his experience:
“It was the goal setting, and one of the pillars of my winning mindset is perseverance and persevering through those tough days and focusing on what the bigger picture was, and that’s really what carried me through the darker days of my journey.”
The ZERO ethos resonated with Tom as all funds raised are used directly to assist prostate cancer fighters and their families. As an advocate for the work that ZERO does to benefit prostate cancer patients, an underfunded area of cancer research, Tom believes that men’s reluctance to talk about their cancer can inhibit recovery profoundly:
“For many men, it’s the embarrassment and humiliation of having a cancer that impacts your manhood. Prostate cancer is terribly underfunded and misunderstood compared to other cancers because men don’t talk about it. They do not engage because of the personal nature of the problem. I was there. Not talking about it definitely makes it worse because there’s this stigma about it among a lot of men and that’s why it’s so hard to talk about it, but you’ve got to talk about it, it’s so therapeutic. And as I learned as I’ve gone through my journey, hearing other men and their families talk about it, I can say: ‘Hey, this is what I experienced and it’s not so unusual’.”
For many men who ‘shut down’ and are unwilling to open up within a cancer-based support group environment, Tom advises talking to a close, trusted friend which can be an important alternative and starting point.
It’s talking with prostate cancer patients from all walks of life that has become Tom’s purpose in life. His career as a technology and cyber security consultant ended with his prostate cancer diagnosis at the age of 61. Now, at 67 (and still looking like a man in his 50s), Tom believes he has found his calling through his advocacy and coaching for cancer patients and those with heart-related issues as, previously in his life, Tom was also diagnosed with heart disease.
“After I got my diagnosis and I started doing the advocacy because this cancer diagnosis, and also I’ve had heart issues, has really helped me find my purpose in life. And that’s my WHY? And now I’ve really dedicated myself to inspiring and helping others get through the challenges in their life, and I feel like I’m a subject matter expert when it comes to prostate cancer and heart disease.”
Through his involvement with ZERO, Tom has most recently been working on a project for the US Government, called the Prostate Cancer Research Program, which evaluates research projects and applications specifically for prostate cancer — whilst the doctors and scientists on the project can discuss and evaluate the scientific and medical aspects of the research, Tom provides the perspective and voice of a cancer patient who has lived through the experience. It is meaningful and significant work.
Discussing mindset is also a passion of Tom’s, and he refers to the dictionary definition of mindset as: “‘Mindset is a habitual or characteristic mental attitude that determines how you will interpret and respond to situations.’ People talk a lot about mindset, but I like that dictionary definition as a starting point. And I talked about fixed and growth mindsets earlier — a growth mindset is the ability to learn, and it’s not fixed and can change with effort, and failure is not a permanent option. And that’s really kind of the definition of a growth mindset.”
Following his 10th IRONMAN® and walking his daughter down the aisle, both completed 14 months after his surgery, Tom committed to his 11th and final IRONMAN® 17 months after surgery, which was the World Championship in Kona, Hawaii — Tom used this as a platform to raise funds for ZERO as well as shine a light internationally on the importance of prostate cancer awareness.
Although he still exercises, Tom believes his IRONMAN® days are firmly behind him, preferring to focus on a simpler, healthier lifestyle and helping others. His daily mission continues to focus on working with cancer and heart disease patients to get through their darker days. In his 2021 book entitled “The Winning Mindset That Saved My Life (Second Edition)”, Tom applies the skills and mindset required to compete in an IRONMAN® to life’s struggles. IRONMAN® is a metaphor for life and it taught him so much. Just like in life, there are many ups and downs in an IRONMAN® and how you deal with adversity defines you. IRONMAN® has been Tom’s vehicle for several attributes, including determination, overcoming mental and physical obstacles, and healthy ideals. He needed all these in his health battles. Tom is so dedicated to assisting cancer patients that 100% of the net proceeds from the book will be donated to benefit medical research. Tom says:
“Now my goals are to positively impact one person at a time and what I’m doing through my advocacy and through the book that I recently authored — net proceeds from the book are going back to medical research, so that’s really what my goals are now, to help other people.”
This includes encouraging men over the age of 50 (earlier if there’s a family history) to have a simple, annual PSA test which could indicate that there are underlying prostate issues requiring further investigation. Referring to the current statistics and, particularly the impacts of COVID on testing, Tom says:
“For most cancers the numbers are trending in the better direction right now but prostate cancer is trending in the wrong direction, and it used to be that a man was, according to the American Cancer Society, dying every 18 minutes but now it’s one every 15 minutes. It’s unfortunate that it’s happening that way, but one of the things that’s accelerated that or exacerbated it is COVID. A lot of men were not getting their health checks, they were putting that kind of stuff off. I’m actually mentoring a man right now who skipped last year because of COVID and now his cancer has progressed and he’s not in great shape.”
Tom’s prostate cancer journey has led him to speak publicly about the issue, educate others on the importance of testing, lobby government relating to important prostate cancer issues, and assist patients with their journey. As Tom says:
“There is nothing more gratifying in life than making a difference in people’s lives and paying it forward. What’s your WHY? Mine is to inspire people to take action and be proactive with their health by sharing my lived experiences.”
Written by Richard Calautti
Live Life Now Project
