Allen Chankowsky: I Survived Cancer and Here Is How I Did It
An Interview With Savio P. Clemente
Appreciate your caregivers and show them that they matter too. I know this one well, because I fell into the trap of becoming overwhelmingly consumed with my awful prognosis that I neglected the emotional needs my girlfriend Cynthia. Think about it — if your caregivers aren’t coping well, how can they be expected to take care of you? By acknowledging and appreciating them, you’re not only being sensitive to their needs but you’re also investing back into your own care by helping them cope better. Yes — you can help them in simple ways. Maybe they need to speak to a mental health professional.
Cancer is a horrible and terrifying disease. Yet millions of people have beaten the odds and beat cancer. Authority Magazine started a new series called “I Survived Cancer and Here Is How I Did It”. In this interview series, we are talking to cancer survivors to share their stories, in order to offer hope and provide strength to people who are being impacted by cancer today. As a part of this interview series, I had the pleasure of interviewing Allen Chankowsky.
Allen Chankowsky is a sales promotion marketing expert specializing in contest promotion strategy and execution. He is celebrating his 30-year survivorship of two types of cancer, including his stage-4 terminal diagnosis in 2016 where the chances of him surviving 5 years was less than 20 percent. Against all odds, through Allen’s hands-on approach fuelled by the love of his life Cynthia, they actively researched and managed his cancer resulting in him outliving his diagnosis and becoming an exceptional cancer survivor. In his highly anticipated book release, On the Other Side of TERMINAL, Allen shares his incredible 30-year story of survival that serves to inspire and teach others about the steps he took to achieve the state of radical remission. His goal is to help as many people as possible to do the same. Originally from Montreal, Allen lives in Toronto, Canada with his two children, Ethan and Hila and his girlfriend Cynthia and her two children Elena and Hayden. In his spare time, Allen can be found winning backgammon tournaments at the United States Backgammon Federation, where he won the Intermediate Division at the 2021 US Open.
Thank you so much for joining us in this interview series! We really appreciate the courage it takes to publicly share your story. Before we start, our readers would love to “get to know you” a bit better. Can you tell us a bit about your background and your childhood backstory?
Thank you Savio. Congratulations on your own survival of stage-3 cancer. I applaud you and the editorial team at Authority Magazine for taking the bold step in publishing this series. I also congratulate every contributor for their decision to share their own vulnerability through difficult emotions and intimate details of their cancer journey.
I was born in Montreal, Quebec, Canada in 1969, joining my family as the youngest sibling to my two older brothers. My parents, who we are blessed to still have with us today, are practical (Mom) and very sociable (Dad) people with a very healthy sense of humor. A typical day growing up would often include several off-colour jokes at the dinner table from my Dad who continues to be a quintessential showman at the age of 84. The content of his jokes together with their delivery usually resulted in contagious giggling and sometimes full-on belly laughs lasting several minutes and often requiring some recovery before resuming dinner. Good times!!
From an early age, I embraced the friendships I developed as a schoolboy and to this day, I’m so incredibly proud of the fact that at 52, I remain close with the vast majority of them. These friends are people of great character, each with their own unique sense of humor and individuality. The mixture of our personalities when together is infectious and have us all coming back for more at any opportunity. The group is so devoutly loyal to one another that we would literally do anything to help each other, no matter the consequences. They say that one can be judged by the company one keeps and I am honored to be judged by anyone, anywhere, based on the people I call friends. To me, they are brothers, and as a family we all count on each other.
The parental modeling I had was generally one where the seriousness of life was often blunted by comedic relief. This taught me that difficult life events are often easier to accept if they are received and then approached in a way that is less about negativity and more about the life lessons that are imbedded within the event. For example, when a particular societal issue would be news-of-the-day, the jokes that would inevitability ensue would serve to highlight the issues by examining them through laughter rather than addressing them directly through more traditional conversation. This mostly worked, however, there was one life event that occurred in 1988 that could not, under any circumstance, lend itself to examination through a comedic lens. On July 14th of that year, one of my siblings, at the age of 23, died in a car accident and my family was thrust into the depths of exquisite pain that was to last a lifetime. I was 19, and short of grieving the loss of my paternal grandfather 8 years earlier, I never had exposure to such intense emotional turmoil. Never had I seen my parents brought to their knees and express unimaginable emotions of loss that they themselves never knew possible. Until that day, my privileged childhood shielded me from situations that involved untenable emotional destruction. The bubble of my childhood innocence had been pierced and I was forced to grow up quickly. I not only lost one of my brothers, I also lost part of my parents and they in turn lost pieces of themselves and of each other. Still, we as a family soldiered on together and moved forward with our individual lives best we could. I moved on to higher education, first pursuing a path in Life Sciences and then out of necessity (more on that below), I changed my focus of study to Environmental Sciences, receiving my Bachelor of Arts from Concordia University in Montreal in 1994.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“You can never cross the ocean until you have the courage to lose sight of the shore.” — Christopher Columbus
I knew from an early age that my fears must be directly addressed if I was to have the best opportunity of overcoming them. Life has knocked me down continuously, however, rather than take the easy way out by allowing myself to be anchored down by the fear of getting up, I gathered myself together, stood up, looked the fear straight in its eyes and didn’t back down. The alternative was simply non-negotiable. Never looking back, I have paved many paths for myself because I pushed myself to move forward. The conscious act of not looking back and not allowing the shackles of emotional and physical turmoil to define who I am is deeply satisfying. The elation of self-empowerment by removing the shackles of fear and freeing yourself to move forward is something that I hope we can all achieve.
Let’s now shift to the main part of our discussion about surviving cancer. Do you feel comfortable sharing with us the story surrounding how you found out that you had cancer?
Yes, and thank you for asking. I first met cancer in 1991 when I was 21 and in the throes of achieving my undergraduate degree. This version of cancer was dressed as stage-2 Hodgkin’s Disease, a blood cancer. It first revealed part of itself as a lump above my left clavicle. This was a sign to look deeper into my chest via an array of imaging scans that exposed the bulk of a massive tumor sitting smack in the middle of my chest. Over the course of 2 agonizing months, I was successfully treated with radiation therapy targeted to the chest, head/neck and abdomen. In 1991, the use of ABVD chemotherapy (Adriamycin, Bleomycin, Vinblastine and Dacarbazine) was usually reserved for stage-3 and 4 Hodgkin’s Disease. While there was some debate as to its utility in my case, my oncology team in Montreal decided that radiation alone should be used as the approach of choice for eliminating this malignant threat to my life. The thinking at the time was that by doing so, damage caused by the radiation to collateral tissue would be limited to the periphery of the radiation field rather than damage done to my whole body with systemic chemotherapy. Spoiler alert: radiation probably wasn’t the best choice….
During the course of my radiation treatment and in my quest to seek and learn everything about Hodgkin’s Disease and radiation therapy, I came across a book from Dr. Mortimer J. Lacher and Dr. John R. Redman titled Hodgkin’s Disease: The Consequences of Survival. I thought the title to be intriguing and foretelling. The major theme of their work revolved around the long-term effects of surviving Hodgkin’s Disease. Reading the book etched a permanent stain on my brain because I wanted so desperately to be a long-term survivor and, if I was lucky enough to become one, I also needed to be prepared for the possible consequences.
In the two decades that followed, I was in the best physical shape of my life — or so I thought. I ran 4 times a week and completed my first half-marathon in 2012. Then, in 2013 at the age of 43, I suffered a heart attack after a training run and required two cardiac stents be installed to open the blockages. The underlying heart disease was a direct consequence of the radiation from 1991. It turns out that the body doesn’t forget what happened to it. Ever so slowly, the tissues of my cardiovascular system were reacting to the insult of the repeated radiation to my chest from 1991. But my cardiovascular system wasn’t the only area of my body that didn’t forget….
Three years after my 2013 heart attack, I discovered a lump on the right side of my neck in July of 2016. A fine needle biopsy of that lump confirmed cancer, however, it was unclear what type of cancer. A head/neck oncology surgeon from The Princess Margaret Cancer Centre in Toronto was asked to perform what is known as a neck dissection to assess for the type of cancer and the extent of its spread. I remember the day of surgery very well. The extent of the neck dissection was as invasive as the cancer itself. Most of the removed lymph nodes (and there were more than 20) were positive for cancer. A bad cancer. A very, very bad cancer. This time the cancer had dressed itself up as salivary duct carcinoma, and it made its presence known in an extremely aggressive way by spreading to neck muscles and surrounding tissue. This “second cancer” developed as another direct consequence of the radiation I had received 25 years earlier. The lymph nodes affected in my neck were now pregnant and swelling with one of the worst head/neck cancers that one could suffer, and the story only gets worse. It was stage-4, otherwise known to be the worst of the worst stages of cancer known to humanity. Despite the skilled hands of an amazing surgeon, the cancer ensured that I would always know of its presence by the resulting hole that followed the removal of half of my right neck. As if that wasn’t bad enough, I was also left with a slash across the underside of my throat like a victim of a knife fight. I had effectively been maimed for all to see and gawk at in public. That used to bother me, a lot. But now, I wear my maimed neck proudly as it reflects part of my survivorship. How can’t I be proud of that? It’s normal human behavior to be drawn to the unusual. It’s like a moth that can’t help itself when it’s drawn to the flame. So I understand how my neck attracts looks in public. I accept it just as I accept other types of behavior traits as being part of the human condition. Rarely do I engage, however, it’s oddly satisfying when on occasion, I catch someone looking and I ask them if they want to get a closer look. Most react by quickly turning away without saying a word. Some apologize. But one thing is certain, they could all line up in single file to kiss my ass because I’m alive!!!
What was the scariest part of that event? What did you think was the worst thing that could happen to you?
1991 — Stage-2 Hodgkin’s Disease:
It’s never an easy thing to receive a diagnosis of cancer, however, it’s particularly difficult as a young adult given that this first diagnosis occurred less than 3 years after my brother’s fatal car accident. My sense of profound concern was shared equally between my own mortality at the tender age of 20 and the further impact on my parents and extended family, regardless of if I lived or died. I’ve seen, felt and continue to feel the devastation that a loss of a child does to a family and the thought that my death could be the trigger of another major loss was all but paralyzing. Make no mistake, the extent of the emotional impact was straight up trauma. Once one experiences trauma, it never fully goes away but rather becomes an ongoing situation requiring active emotional regulation. Dealing with this trauma, however, cut both ways. On the one hand, the ongoing nature of the threat to my life and to my family was excruciating. On the other hand, living was a good thing, but it came at the cost of learning how to manage the ongoing threat. My fear was that I would be cursed by having the trauma haunt me if I wasn’t able to control the emotional impact and that I would not be able to fully enjoy life under the weight of the pressure to live. I wanted to hastily advance my life — to begin working and be self-sufficient like my friends. I wanted to marry, to have children and grandchildren. To have a partner to enjoy life’s wonders with and to help each other cope with its inevitable difficulties. But my greatest fear of all wasn’t for me, it was (and is) that I would die before one or both of my parents.
In my upcoming book, On the Other Side of TERMINAL, I describe the circumstances, effects, and the detailed story around my first cancer diagnosis in 1991.
2016 — Stage-4 Salivary Duct Carcinoma: This will be the focus for the balance of the interview.
25 years later, life had changed, and this was mostly good — very good. I was still alive. Alive AND kicking. Surviving cancer for 25 years isn’t just about surviving, particularly as a young adult. It’s about developing the emotional wherewithal to weather the inevitable difficult moments that are certain to come along in life. However, if there’s one event that takes the wind out of one’s sails, it’s the diagnosis of another cancer. While I am grateful for the 25 years of life, nothing can prepare one to receive a diagnosis that can only be described as a singular word:
Generally, once the initial shock of a cancer diagnosis subsides, it’s often met with feelings of hope through the reliance on modern medicine. However, no matter the type of cancer, when doctors designate the stage of cancer to be terminal, for many, it usually signifies certain and imminent death. How could it possibly mean anything else?
My life had changed markedly from 25 years earlier in that I had two children who were dependent on me. Ethan was 12 and Hila 9. Cynthia and I finally found each other three years earlier in 2013. Imagine my elation of finally finding the love of my life, the one who had been holding the key to my heart all along and then this. The diagnosis was akin to the explosion of a nuclear bomb. The utter devastation made it difficult to breathe. The stakes were higher now. Much higher than in 1991. I couldn’t die. Not now. It didn’t matter that the second hospital in New York and the third hospital in Houston confirmed this awful diagnosis, it wasn’t my time to die. It couldn’t be my time.
My greatest fears were that I wouldn’t be able to fulfill my obligations as a father, as a son, as a life-partner, as a member of my family and as a friend to so many. I feared that I wasn’t going to able to fulfill the obligation I made to myself in 1991 to live a complete life. A life in which I was able to experience what most people experience in a “normal” lifetime — school graduations and weddings of my children, the satisfaction of watching them develop into well-grounded and functioning adults, witnessing with pride as they do what they love in life and helping them through difficult life transitions with the emotional tools I helped them to acquire. But those dreamy possibilities that every parent hopes for were disintegrating right in front of me.
How did you react in the short term?
My initial reaction was one of shock and awe because I had been feeling great prior to the neck surgery. Then panic set in because eliminating the cancer was no longer an option. The cancer had freed itself from the confines of my head and neck and migrated to my lungs. If I didn’t find a solution to extend my life beyond the hopelessness found in the dismal statistics, it was game over. I couldn’t bring myself to the point where I was able to have frank discussions with my family and my friends about the dire seriousness and urgency of my medical problems. I had to protect my parents at all cost for as long as possible. The only person I let in was Cynthia. My fearless cheerleader — she had been with me every step of the way. Despite the statistics, she was overflowing with positivity and hope. But like so many before me, the thought of impending death forced me into my shell and I asked Cynthia to come in with me. I asked that she please not reveal the details or gravity of my medical and emotional emergency to family and friends until I was ready. This meant that Cynthia herself carried with her the weight of impossible news and worse still, she couldn’t get the support that she needed. I hated myself for burdening her with my request. Cynthia lovingly obliged and honored my request and told no one of the bleakness that was all but certain to unfold.
After the dust settled, what coping mechanisms did you use? What did you do to cope physically, mentally, emotionally, and spiritually?
According to the statistics, my chances of surviving 5 years with my stage and grade of cancer was at best, 20 percent. However, Cynthia didn’t want to talk about the overwhelming probability being 4 in 5 that I would die within 5 years and most likely sooner. She instead wanted to focus on the 1 in 5 chance that I would live. She would ask, “why can’t YOU be that 1 person out of 5 who lives?” Her point was a good one. The challenge was how to become that 1 in 5 person. So we got to work.
I promised myself that if I became that 1 in 5 person who outlived a terminal diagnosis, I would write a book and share the story of how I did it. That was my private goal that I made for myself, and it helped fuel my desire to live. In my book, I expand on what Cynthia and I did and how we did it so that others may benefit from this knowledge and live longer and better lives despite cancer — even a really bad cancer.
Is there a particular person you are grateful towards who helped you learn to cope and heal? Can you share a story about that?
To fully appreciate what it takes to care for a cancer patient, one must understand that the care is comprehensive. I sat down and wrote out the key doctors, residents, nurses, technicians, pharmacists, clerks, students and counted more than 30 people who cared for me. Then my friends and family who, despite my need to step out of the limelight and become unavailable, continued to offer me their support in any way they could. I owe them all a debt of gratitude, particularly my parents, Mona and Marvin Chankowsky.
Many of my relationships have suffered on account of my need to turn inward. While I won’t apologize for needing to focus exclusively on surviving and thereby becoming unavailable to family and friends, they all need to know that their love and support were key factors in helping me see the light. These people know who they are, and they know how grateful I am. I hope to make up for lost time.
There are, however, two people that must be singled out and acknowledged because if not for them, I truly believe that my life would have ended over the course of the last 5 years.
When it became clear that I was deathly ill in 2016, Cynthia stopped working to be available to me. From stoically sitting with me at every hospital appointment, travelling with me to New York and Houston for second and third opinions, to having to listen to my initial and then repeated negativity, her love and support was as reliable as one could hope for. Despite the overwhelming sense of dread, Cynthia would not give up being positive every day and that proved to be one of best aspects of this story. When I couldn’t guide myself through the flames of certain death, she took control and led me to a clearing where I could escape the scorching heat. It was an impossible task but she did it out of love. I am the luckiest person alive to have met Cynthia.
As part of my circle of care at The Princess Margarete Cancer Centre in Toronto and given my dire circumstances, I was referred to the Psychosocial Oncology Clinic for the purpose of receiving psychological supportive care. Over the course of the last 5 years, I had the good fortune of working closely with Dr. Madeline Li, who took me under her capable wing and helped me through a very dark and deep depression. At our first meeting, she indicated that she saw potential in me, saying at the end of the meeting, “I think we can do some really good work together.” Her statement, even in the context of my awful diagnosis, made me feel that all wasn’t lost. Perhaps there may be a glimmer of hope. While my book expands further on the value of Dr. Li’s contribution to my emotional healing, I would be remiss if I did not single her out here as being a central figure and significantly instrumental to my emotional healing. Always professional in her demeanor, Dr. Li is kind, understanding, approachable, non-judgmental, and always willing to go that extra step if she feels it can help.
In my own cancer struggle, I sometimes used the idea of embodiment to help me cope. Let’s take a minute to look at cancer from an embodiment perspective. If your cancer had a message for you, what do you think it would want or say?
My cancers did and do have similar messages for me. Like reading the same work of poetry across many years, the messages held in the words take on different meaning depending on when in life you read them. For example, at age 20 when my 1991 Hodgkin’s Disease told me that there was urgency for me change my study plans and advance my life, I heeded the call and decided not to continue with my goal of advancing to medical school. I preferred to achieve a Bachelor of Arts degree and head straight into the workforce. Pursuing higher education beyond an undergraduate degree was viewed as an obstacle to me realizing the privilege of marrying and the honor and responsibility of having children. But even the best-laid plans often go awry because the bonus experience was a messy divorce. While my 2016 cancer had a similar message, having had 25 years of life experience under my belt offered me a different point of view as to how to live. I have two children and they keep showing me every day that I was born to be a Dad and I intend to live that dream for as long as I can.
What did you learn about yourself from this very difficult experience? How has cancer shaped your worldview? What has it taught you that you might never have considered before? Can you please explain with a story or example?
There is one other very important message that my 2016 cancer had for me. And that was to pursue my other love for the game of backgammon. For those who don’t know, backgammon is a mind game where one uses skill to move 15 checkers around a board as directed by the luck of throwing a pair of six-sided dice. The goal is to bear off your checkers before your opponent does. At any given state of the game, there is only one best move to choose from after you roll your set of dice. Choose the wrong move and the likelihood of losing the game increases. To compete at the highest levels, modern players train with software that calculates the percentage of winning (or losing) at every stage of the game. One day I was participating in a backgammon tournament, playing a final game in a match, and I was losing the game by a very large margin. In fact, I thought that the chances for me to survive the game and win the match were zero. The game turned around and I made an improbable comeback and ultimately won the game and the match. I took the game file and imported it into the software, and it calculated that my chance of winning the game at my worst possible position was 2.3 percent. And there was the message. It was the same message that Cynthia had been telling me all along but this time in a different form. Even if it seems that you don’t have a chance to survive, think again because you do. Fight hard. Make wise decisions and never give up hope.
How have you used your experience to bring goodness to the world?
Unfortunately, I’m late to the sharing party because it’s taken me time to finally come to terms with the reality of my situation. While it’s true that my cancer is indeed terminal and that won’t change, it’s also true that the durability of my status of being an exceptional survivor persists. So, after realizing my lofty goal of living 5 years, I’m trying to make up for lost time by self-publishing my upcoming book, On the Other Side of TERMINAL, which will soon be available. I take readers through the emotional journey of my life and the steps I took to achieve the state of radical remission that I continue to enjoy. For cancer patients and caregivers alike, the book is for anyone who wants to be inspired about how terminal isn’t about that final destination, rather, it’s about the journey. Through publishing On the Other Side of TERMINAL, I look forward to sharing my journey with everyone who wants to join me and benefit from the experience.
What are a few of the biggest misconceptions and myths out there about fighting cancer that you would like to dispel?
Myth: Cancer is a death sentence
Look, it’s 2021 (almost 2022) and I’m alive AND kicking. It’s possible that new growth of my cancer could be identified tomorrow or next week, next month, next year or in 10, 20, 30 years from now. Who knows? The important part is that, despite all odds, I’m alive today because of the deliberate steps Cynthia and I took to create the opportunity for me to achieve a state of radical remission.
According to the American Cancer Society’s National Cancer Institute’s Annual Report to the Nation on the Status of Cancer, from the years 2014 to 2018, overall, cancer death rates decreased 2.2% per year (on average) among males and 1.7% per year (on average) among females. Cancer death rates decreased an average of 0.9% per year among adolescents and young adults, and an average of 1.4% per year among children. And overall cancer incidence rates are leveling off among males after earlier declines and increasing slightly among the female and adolescents/young adult cohorts.
What does all that mean? While cancer is being diagnosed at the same or slightly higher rates, the overall death rate is decreasing year over year. There are several good reasons for this including but not limited to the fact that cancer screening is being done earlier and by more people. The sooner cancer is detected, the chances are lower that the patient will die from their disease. And if the cancer needs to be treated, we can rely on an amazing number of medical and therapeutic advances to aid in the management and cure rates. So, while some advanced cancers are strongly associated with death, the data overwhelmingly supports that when looked at from a global point of view, people are generally living longer and better lives after a cancer diagnosis. And I am a prime example of this.
Fantastic. Here is the main question of our interview. Based on your experiences and knowledge, what advice would you give to others who have recently been diagnosed with cancer? What are your “5 Things You Need To Beat Cancer? Please share a story or example for each.
Even if your cancer is labeled as “terminal”, you may have an opportunity to outlive your diagnosis. I hope these 5 things help make that dream a reality for you, just as it did for me:
- It is critical to know the genetic and biomarker profile of your cancer. If you only remember one of these 5 things, this is the one. To have the best chances of surviving your cancer, you absolutely need to know all you can about your disease — all its strengths and all its weaknesses. You do this by working with your doctor to organize the DNA sequencing of your tumor. This is also known as Biomarker Sequencing, Whole Genome Sequencing or Next Generation Sequencing (NGS.) The sequencing process unlocks the critical information about what drives your cancer to grow. Knowing that information is the first step in identifying treatment options such as targeted therapies with new and emerging drugs or even older drugs that are now being re-purposed for cancer types that were never even considered when the drug was originally developed. We have this technology and it’s readily available. In fact, I had my tumor sequenced back in 2016 and that was 5 years ago. While tumor DNA sequencing isn’t new technology, many people still don’t know about it or if they do, many still don’t understand the power of its value. Not knowing the mutations, pathways and checkpoints that drive the growth of your cancer can lead to incorrect treatment selection, potentially affecting how long you have to live. But there’s a simple way to make the best available treatment choice for your cancer — and it’s to get your own tumor’s DNA sequenced. Ultimately, your choice of lab to sequence the DNA of your tumor is a personal choice and only you, together with your doctor, can make the decision as to which lab you want to work with. That said, I recognize that tumor biomarker sequencing is new to many patients and because of this, I wanted to share the links of two sequencing labs in North America, strictly for information purposes. These two are reputable and well known within the oncology community but there are others. I do not have any business relationship with these companies and will not financially benefit if you choose to use them: Foundation Medicine (USA)- https://www.foundationmedicine.com, Foundation Medicine (Canada): https://www.foundationmedicine.ca
- Use your smart phone or computer as a research tool to unlock access to treatment information. While this seems obvious, you would be amazed how many people don’t view their connected devices as excellent tools to research their cancer. Some say, “yeah, that’s my doctor’s job’, or “that’s what they went to medical school for.” The fact is, there’s never been a better time in history where cancer patients themselves have direct access to information related to their disease and treatment options. We have never before had this level of access to medical information. Back in 2016, I was researching the mutations of my cancer and found research journals from all corners of the world that were in support of a novel and not well-known treatment for my cancer type. I brought those peer reviewed journals into several meetings with my oncologist. She had not yet come across the research that supported my choice of treatment that I thought had the best chance at extending my life. That meant that while my oncologist was ready to prescribe the standard chemo that results in 4 out 5 people dying within 5 years, it was my iPhone that facilitated my access to a better treatment option that would ultimately help me outlive my best before date. It wasn’t my oncologist’s fault that she wasn’t yet aware of the research I brought in, nor is it any doctor’s fault. The sheer volume of medical journals being published every day around the world is incredible and the rate of publication is increasing rapidly. With physician workloads, it’s impossible for any doctor to keep up with the pace of research publications. But you are the person closest to your cancer. You have the ability to be laser focused on your cancer. A connected computer or smart phone is one of the best keys to unlock vital information and access to new and emerging treatment options. Who knows, perhaps you’ll discover a treatment option of your own to help you to live longer and better.
- Develop excellent communication and follow up skills. When you have a serious disease posing a direct threat to your life, having access to a cooperative oncologist or primary care provider with whom you have a good working relationship is critical. Like myself and so many others, your disease may have been diagnosed at an advanced stage, so to address the threat properly and expertly, you need to have excellent and sustained communication with your medical team. If your doctor is one of those people who thinks they know everything and isn’t open to learning from educated patients who are being proactive about saving their own life, I suggest finding a new doctor who is. In some cases, it’s not possible or reasonable to expect that a patient can have these conversations with their team. Chemo brain fog or sedation from any number of drugs are but a few reasons why it can be challenging. If this is the case, ask one of your caregivers to speak and advocate on your behalf.
- Look outside of cancer and find something you love doing. Life doesn’t and shouldn’t stop because you have cancer. Surviving cancer involves other things outside of the medical realm and it’s important to understand why. Having cancer is hard. Really hard. Particularly having cancer at an advanced stage like me. It’s normal to need a temporary reprieve from the intensity of your cancer experience. There’s a whole range of activities from faith-based programs to fundraising or reading books, to watching movies or even throwing yourself deeper into your work or a personal project. For my dear friend Lara, who successfully battled invasive ductal breast cancer 5 years ago, she maintained her demanding physical training while on chemotherapy, radiation and Herceptin and went on to complete a full Iron Man competition 12 months later. For me, of all the things to choose from, it was playing backgammon that did it for me. By re-engaging in a game that I used to love playing, it helped me take my mind off my disease. Not only do I enjoy playing the game for the pure experience of playing a competitive game, but backgammon also reinforces that no matter how bad you are losing, there is always a chance that the game can turn around. In my upcoming book, On the Other Side Of TERMINAL, I talk more about the significance of backgammon and its contribution to my own cancer experience. While avidly enjoying playing, I also won the Intermediate Division at the 2021 US Open through the United States Backgammon Federation and then went on to be crowned the best backgammon player in the city of Toronto through the Canadian Backgammon Federation. I don’t say this to toot my own horn. Rather, it’s to identify that if you temporarily turn your mind to something other than cancer — to something that you enjoy doing, something that you can excel at or accomplish — you’re enhancing your life. Studies show that cancer patients do better when they engage in personal enjoyment and a sense of accomplishment. So find something that you like, or even better, something you love — something from your past that you once enjoyed or perhaps something that you’ve always wanted to do but never had the chance. Set a goal for yourself. Mine was to self-publish a book and I’m only weeks away from checking that one off my bucket list.
- Appreciate your caregivers and show them that they matter too. I know this one well, because I fell into the trap of becoming overwhelmingly consumed with my awful prognosis that I neglected the emotional needs my girlfriend Cynthia. Think about it — if your caregivers aren’t coping well, how can they be expected to take care of you? By acknowledging and appreciating them, you’re not only being sensitive to their needs but you’re also investing back into your own care by helping them cope better. Yes — you can help them in simple ways. Maybe they need to speak to a mental health professional. Perhaps they would benefit from speaking with a friend or another member of the family about their fears, concerns, emotional needs or maybe they just want to spend a few hours doing absolutely nothing. And if they do want to do something, perhaps it will have nothing to do with you or your cancer — and that’s ok. I didn’t understand this at the beginning of my journey because I was too wrapped up in my own despair. It prevented me from seeing that Cynthia, the love of my life, also needed help and her own space to process these impossible emotions. So be mindful of the emotional impact on your caregivers. And if you get it right or even close to right, you will both benefit because your relationship will be stronger for it.
You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the greatest amount of people, what would that be?
Thank you for the compliment, Savio.
The primary reason I sought to publish my book, On the Other Side of TERMINAL, was to share the steps I took to outlive my terminal diagnosis with as many people as possible. It is my hope that the book will serve to educate, inspire and ultimately help as many cancer patients and their families as possible. I also hope my book could help physicians better understand what radical remission is. Understanding that for many patients, achieving a state of remission may be attainable if they take the proper steps according to their patient’s individual medical circumstances.
Rare cancers are those cancers that occur much less frequently in a given population as compared to common cancers. For example, the prevalence of breast cancer is far more common as compared to salivary duct carcinoma. Research and fundraising efforts are mostly driven by common cancers because there are more patients and families affected by these cancers. Rare cancers, on the other hand, don’t generate the research dollars needed because there are not enough patients and families to generate enough money for researchers to recuperate their research and development investment. Since researchers are usually granted their allotment of research money in relation to the most common cancers, this leaves a huge void in the research needed to address patients with rare cancers, like me. The movement that I would like to inspire is to recognize those cancer patients who have rare cancers by motivating governments to incentivize multi-national pharmaceutical giants to establish more significant R&D budgets to address these rare diseases. This is important because while one rare cancer type may represent a small amount of people, the combined amount of people across all rare cancer types is very large. The rare cancer population is severely underserved, leaving them to fall through the cracks. The mystery of their rare disease is buried with these patients when they die and that needs to change. Look at how the world mobilized to come up with an answer to COVID. Just imagine what would happen if cancer became infectious and how the world would mobilize to address the threat.
We are very blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch, and why? He or she might just see this if we tag them. :-)
Ben Stiller. There are a few common experiences that we share. First, it would seem that we both benefited from the big comedic personalities afforded us through our respective dads. With parental personalities that large, it would have been impossible for each of us to not have been positively affected. We were both diagnosed with cancer at age 47. We both kept the details of our cancer private for a significant length of time. Like me, I assume Ben had to do some significant introspection before he fully came to terms with his cancer. We both have two kids roughly the same ages. We both played the drums. We are both big Howard Stern fans. In fact, Ben first revealed that he had prostate cancer on the Howard Stern Show. My cancer has many similarities to prostate cancer in terms of its genetic mutations and my ongoing cancer treatment is managed by an oncologist who specializes in prostate cancer. This means that at age 47, I found myself in the prostate clinic for regular follow ups. I’m fairly certain that Ben had a similar set of prostate clinic experiences. Few 47-year-old men have the experience of sitting in a waiting room full of elderly men with prostate cancer. It’s surreal, bordering on comical, and among other things, I’d love to chat with him about that. But most important is that he has a great sense of humor that I am certain helped him navigate his cancer experience in a novel way, as it did mine (and continues to do so…)
How can our readers further follow your work online?
Please visit my website for more information and to get notified when On the Other Side of TERMINAL becomes available. I also encourage you to please send this interview to anyone you feel may benefit from it. I look forward toward connecting with you soon.
Thank you so much for sharing these important insights. We wish you continued success and good health!