Like Father Like Son – the retelling Jeff’s story written by Susan Willsie
The big window beside his desk looked out over the roof top of a school. Outside, a variety of discarded and deflated balls and Frisbees lay there, forgotten by their owners. Inside, on his desk, a row of bobble heads sat motionless. I was alone in the room when my doctor shared the diagnosis. Strangely, I already knew what he was going to say before he even said it. You have cancer.
My doctor asked me if I was OK to get home on my own or if there was someone he could call. I was in Toronto, an hour away from home. I assured him that I was fine and oddly, in that moment, I believed that I was. I left the office and made my way towards my car. The fresh air and sunshine felt at odds with the information that my brain was struggling to process. Now what? The doctor had explained my options for treatment, but my heart was pounding too loud in my ears to really hear what was being said. Part of me wanted to covet my secret while I could. Another part of me took solace in it. When I reached my car, I unlocked the door and climbed in. I felt fine. I felt normal. How was this devilish disease lurking inside of me? The only part of me that felt different was my conscience. I put the key into the ignition and turned over the engine. When do I have to start telling people? Who do I tell first? How do you tell someone that you have cancer? How do you tell your two young sons without causing extreme fear? Worst of all, how do you start a conversation with your father who was fighting his own battle? The same cancer that had invaded his body, was now attacking mine. Like father, like son they say.
Looking back, my support of the Movember Foundation started because I thought it would be fun to grow a moustache. The Movember Foundation is a multinational charity that raises awareness about men’s health. For 30 days every November, men grow moustaches in an effort to “change the face of men’s health”. In 2012, I rallied a few friends, asked for donations and committed to growing the best moustache that I could grow. It was ugly but that November, I raised $432. I had exceeded my own fundraising expectations and I was quick to take a razor to my ‘stache on November 30th that year. Upon reflection, my draw to the Movember Foundation was pure fun. Little did I know how much I would learn from them in the years to come nor did I think they would offer me guidance through my own fight with the relentless disease. I quickly learned that growing ugly moustaches is one small component of the powerful work they do.
In 2013, my father Ed was diagnosed with prostate cancer. Prostate cancer is the most common cancer affecting Canadian men. One in seven men are diagnosed with the disease in their lifetime. (Prostate Cancer Canada.ca, 2018.) I learned through my research that prostate cancer is an unpredictable disease but when detected early, it can be treated effectively. That November, my campaign was less about the moustache and more about raising awareness. If growing a moustache could generate a conversation or two, I was happy to be that guy with the hairy upper lip for another 30 days. Early detection is what saves lives. Recognizing the signs and understanding the symptoms became my focus. I was on a mission to start some conversations.
I learned that prostate cancer is a cruel and complicated reality for too many fathers and sons. The Prostate Cancer Canada website informed me that my risk of being diagnosed was higher when a first-degree relative (father or brother) had cancer. As I understood it, a simple blood test called the Prostate Specific Antigen or PSA test, could help with early detection. I placed a call to my doctor.
On the day of my appointment, I walked into the small, windowless office. The overhead lights were severe and the tiny desk felt confined within the box we were sitting in. The examination table was to my right, a sink was to my left. There was a bottle of hand sanitizer on the counter while a picture of a giant ear hung on the wall. He took the blood pressure cuff off of my arm, rolled his chair away from the desk and laid a very flat “no” on the table. I had just informed him that my father was diagnosed with prostate cancer and that I wanted to be tested to see if I was also at risk. My request was denied. All of the research that I had done indicated that I was a potential candidate and secretly, I had some inklings that something was indeed going sideways inside of my body. My constant need to urinate felt abnormal. My concerns were dismissed. My doctor felt that I was too young and there were no reasons to indicate that I was at risk or that I needed to have my PSA levels checked. I was in my early 40’s and I was in good shape. It was his professional opinion that I was not at risk.
I disagreed. I was young and active but there were other factors present. Frequent urination, blood in my semen, and a father undergoing radiation because he was fighting prostate cancer. Three strikes. A simple PSA test was all I that I needed to confirm or deny my suspicions. That blood test measures the amount of PSA protein in the blood. It can be used to establish a baseline. Prostate Cancer Canada recommends that men in their 40’s get a PSA test to establish that baseline. Men who have elevated risk factors are recommended to talk with their healthcare provider about prostate cancer before the age of 40. I was following all of the rules and I – the perfect cancer candidate – was being denied a simple blood test. My doctor’s words to me were “let’s just wait and see what happens”. I was stunned. Wait for what? For cancer to invade my body? No thanks. Waiting was not an option.
Visiting doctors and meeting medical teams became my new way of spending time away from the office. Not my first choice for amazing “vacation” destinations but I started to notice trends and took interest in the assumptions that I was making about the quality of care I was about to receive as it correlated to my first impression of the medical practices.
This particular experience felt promising. It was spring and I was celebrating another birthday. The morning air felt fresh after a tiresome winter and I grabbed one last deep breath before opening the massive glass doors. Inside, the glossy marble floors and welcoming soft leather chairs made me smile. I predicted a good experience. It was a far stretch from the giant ear on the wall in the cramped office of my family doctor. Somehow, I felt comfort. I was ready for the pieces of my medical puzzle to come together and form the complete picture. I felt like regardless of what tests I had to take and what procedures I had to endure, this place was going to help me get there. The experience of stepping into a serene, clean, open space and leaving the bustling pedestrians of the crowed downtown Toronto street instilled a level of confidence. Music that I actually I liked fell over my ears from the hidden speakers surrounding me. Being greeted with a smile and a small wave by the woman sitting at the easily accessible reception desk was relieving. The drive down the congested 401 highway felt worth the risk so far. The tightness in my belly started to wane. When taking your health and wellbeing into your own hands there is a very real sense of fear and liberation all mixed into one. My instincts told me more needed to be done and yet I was being denied. It was moments like this that I knew my father’s stubborn and controlling attributes had not skipped a generation. I needed to take control of this runaway train because I knew something wasn’t right inside of my body.
The company I worked for, as part of their health benefits package, offers a full body medical scan through a private, medical clinic. I am a believer in our amazing Canadian healthcare system, but I needed more than what my family doctor was willing to offer in that moment. I was willing to pay to get myself some answers. That year, I reserved a portion of my annual performance bonus to pay for the luxury of being poked, prodded and tested from head to toe. Strangely, it was worth every penny. It there that I would meet a myriad of amazing health care professionals. It was also where I would meet the doctor who would diagnose, educate, and motivate me in ways that would change my life forever.
The overall gist of how my MedCan journey went was this; step one was a whole lot of blood work. Step two was a manual test of my prostate. That led to a step 3 which was a colonoscopy. (They were checking to see if my colon was also wreaking havoc in my body.) Step 4 was a biopsy which confirmed that I had prostate cancer. Step 5 included being presented with options like radiation and surgery. The good news is that my colon was cooperating. No problems there.
I learned quickly that I was considered young for a diagnosis of prostate cancer. Medical students were frequently filed into my examination rooms throughout my treatment process to assess, analyze and learn from my situation. I was told that I was an anomaly. Nurses praised my healthy veins and joked with me about the ridiculously embarrassing and invasive things they were doing to my body. My tattoos generated more than one conversation. One young doctor joked with me and said “I bet you never thought you’d be lying on a table with a doctor like me sticking her finger up your bum, did you?” Nope. I definitely did not. Her humour comforted me and I appreciated the opportunity to laugh through my stress. Somewhere in this world, I am a paragraph in a medical text book. I kid you not. This amazing privilege (and more!) was bestowed upon me because of my age and my exceptionally high PSA levels. It would seem prostate cancer is no longer an old man’s disease. I was living proof.
Two weeks before I was scheduled to have robotic surgery to have my prostate removed, I ran in the Tough Mudder with two of my closest friends. The Tough Mudder is an 18 kilometer, muddy, obstacle race. The spirit of that challenge is all about team work and leaving no one behind. According to their website, “fellow Mudders will always be there to lift you up – literally”. Mudders lift you up and over 8 foot walls and drag you through mud pits that have electrodes dangling above your head. When those electrodes make contact, they drop you to your knees. It was the perfect challenge for me to take on with my amazingly supportive crew. We set out to finish the course and we did – cancer and all.
The man I was on the day of the race was not the man I was three weeks later. Much like the Tough Mudder, recovering from the less invasive, robotic surgery to remove my prostate literally brought me to my knees. But that is where the comparison ends. I was told I would likely leave the hospital 24 hours after my surgery. I was still there 3 full days later. I lost close to thirty pounds in three shorts weeks and I had a catheter attached to me that acted as a minute by minute reminder of my dependence upon others. I was not sleeping, I was not eating and I certainly was not able to walk very far. My independence, strength and somedays even my dignity, had vanished. My emotional well-being was teetering alongside my physical well-being and I was exhausted. I was in constant pain and I felt like I was looking up from the bottom of a very dark hole. One day, I was feeling especially low. I found myself looking into the mirror to a man with dark purple rings under his eyes and a pale, sullen complexion. I barely looked like myself and I was done. I actually said out loud, “I quit”. I was done with the pain, and I was tired of my constant dependence on others. In that moment, staring at my gray, tear streaked face, I made the choice to fight back. What did I think that I was quitting? I desperately needed to realign myself with who I wanted to be again. I would learn later, not everyone makes that same choice. The physical toll is only one component of recovery. The mental side is often the most grueling aspect.
I consider myself a strong person. I may not be the first in line to openly express my emotions but I am a happy, supportive, loyal man whose life is chock full of good people. I am the guy that people call when they need help moving, dog sitting or when they have the extra ticket for any sporting event. I express emotion when my team is winning or losing – outside of that, I reserve it for family and my closest friends. I was raised to keep my emotions privately concealed behind closed doors. My experience with prostate cancer changed me. Family, friends and strangers alike offered me care, conversation and companionship. Initially, I found this overwhelming. In the past, I was the one being helpful – I had never been the one in need of this level of help I didn’t know how to accept it. I was uncomfortable and embarrassed – I felt stripped down and exposed. The profound impact this had on me is difficult to express. I learned that homemade soup and brownies are indeed made with love, conversations on the porch can be healing and that paying attention to the littlest wins along the way encouraged me to go further and try again the next day. People who loved and supported me came from every corner of my life in ways that I had never imagined. I learned that cancer gave me way more than what it took from me.
My most poignant lesson came from my surgeon Dr. Rajiv Singal. He encouraged me to share my story and start a conversation – just one conversation. He shared that many men struggle with the emotional side of this type of health challenge and frankly prostate cancer and its embarrassing symptoms are not things we men find ourselves talking about over a cold beverage. Dr. Singal told me that if I was able to get one man to talk to their health care professional about their concerns, then I would be making an impact on this disease. The word impact resonated with me. I accepted his challenge head on. When people asked me how I was doing, instead of saying “good” or “fine”, I started to tell a more detailed version of the truth. I was good and fine but there is so much more to the how are you doing conversation ad I was willing to capitalize on it. Because I started opening up with my own truth, people started sharing their own experiences with cancer as well. I was astounded by the number of men my age who shared their father’s experiences with prostate cancer. Knowing what I knew about first degree relatives and cancer’s path from father to son, I strongly encouraged them to get their PSA levels checked. After that, I’d drop my standard line and say “don’t fear the finger”. Humour can go a long way when men start talking about things that make them visibly uncomfortable.
I also learned that cancer is a strange unifier. The reality is, there are very few families that have not been shredded by its talons. When my diagnosis came along, I was young and in good shape going into my fight. I was surrounded by people who were shocked by the diagnosis. Frankly, the impact of hearing the news of my diagnosis was jarring but the word impact kept coming back to me. The impact of the news led me to struggle with my own discomfort and foreign emotions as related to my immortality and relationships. The impact I felt while struggling to find and create balance both physically and mentally. The impact of feeling very alone. The impact of convincing myself and others that I was fine. The impact this disease could have on my two sons. The impact of surrendering my own stubborn tendencies and asking people for help. Cancer doesn’t care who you are when it takes over. Its impact is relentless.
Movember started as a fun moustache growing moment in time for me. Dr. Singal put me in touch with the people who run the foundation’s Toronto Chapter. Through the foundation I have been given the gift of on-going education and continued conversations. I have been presented with multiple opportunities to start conversations with family, friends, colleagues and strangers alike and share my experience about how I made a choice to advocate for my own health. When I began this journey, I didn’t know what a PSA test was – I barely understood what purpose the prostate serves in a man’s body. In return, I have educated many men (including fathers!) that the prostate gland is the male reproductive organ whose main function is to secrete prostate fluid – one the components of semen. We need our prostate if we want to make babies. How do we as men not know more about these important functions of our body? My willingness to open up and share my experiences with people changed me. I have morphed from an anomaly in a medical text book to an advocate for men’s health. I have covered everything from talking to people about my diagnosis, to explaining the surgery, to walking them through my recovery and all of its embarrassing side effects. People were interested and they were listening. Dr. Singal told me that the reality is as common as prostate cancer is, it is widely misunderstood. I took Dr. Singal’s challenge seriously. He told me that if I could positively impact one person by sharing my story and encouraging them to get checked, than I should consider myself successful.
The November after my surgery I was ready to raise money and awareness for Movember again and this time I had a lot to say. It had been six weeks since my surgery. I spent four of those weeks sleeping in a reclining chair in my living room because I could not walk up my stairs. I remember the elation I felt the first time I climbed those stairs on my own. The challenge was reminiscent of my experience running in the Tough Mudder. Reaching the top of those stairs felt just as good as when I crossed that muddy finish line 70 days prior. I went to Movember.ca and put the call out for another team. That year, my team was 25 people strong. We and our robust ‘staches raised $10,500 in 30 short days. More recently, the Movember Foundation selected me as one of 25 people globally to represent them at the New York City Marathon. Never could I have ever predicted that I would be able to tell anyone that I am a survivor of prostate cancer. Beyond those absurd words – never could I have ever predicted that cancer would give me as much as it has. Cancer gave me the gift of life and I am choosing to live it.