The Cancer Survivor’s Paradox

My cancer journey – like all other’s – has various stages, I’ve been fortunate to have many stages – in that I have reached the stage that all patients pray and work so desperately to reach: survivorship. For me to be classified a “survivor” I had to advance through a range of stages: diagnosis, treatment, relapse, stem cell transplant, remission, and now survivorship. But this part of living as a survivor comes with its own set of challenges. Many of which are unknown when you are first diagnosed and honestly could be so insignificant by comparison to what it takes to ‘survive’. But survivorship is a journey in itself. For me personally, I’ve now had two more diagnosis days in my 30s, melanoma. And though the treatment plan was very different than lymphoma 20+ years ago, being told you have cancer – no matter the type, kind, or severity is never anything I would wish upon a person and to call it a triggering, traumatic experience is an understatement.

But it’s important to never forget that for many lucky enough to survive cancer like me, comes the harsh effects to the body that has endured some of the most powerful drugs, radiation, and surgeries a human can face. Now decades later, my life is centered on living with the implications of treatment.

My fertility rate is drastically impacted by the radiation as a teenager, causing my potential inability to have children naturally – if ever. A stark reality to have to live with when growing up with sights on being a father one day.

My thyroid is nearly non-functional without medication, causing strict reliance on daily medication or else risking significant metabolic failure.

And most recently, I’ve had to experience the struggle with what my oncologists warned me off after chemo and radiation 20 years ago: my heart experienced significant trauma and they advised me to avoid things like heavy weight training, long endurance events, or high-altitude activities. As a highly active, healthy eating 33-year-old, I spent nearly two years trying to figure out why I suddenly could run a half marathon one month and the next struggle to finish a few miles of running without chest pain. Eventually, after months of tests and constantly needing to advocate for myself and not accepting unsure answers, through a cardiac catheterization it was found that I had a 95% blockage of the right aortic valve in my heart. This was caused by the radiation treatment in my chest 20 years ago causing stenosis – a scarring which built up no matter the amount of exercise and level of healthy living, requiring a stent to be placed and me to forever be a cardiac patient.

Cancer is unrelenting, stubborn, and cruel. When you think it’s taken everything from you, it takes more. When you think it is behind you, it jumps back into your reality. When you feel you can no longer be scared of it, it can suddenly terrify you. And when you feel proud to claim victory over it by being ‘cured’, it still has residual impacts on the rest of your life.

It might sound like I’m an ungrateful or jaded survivor – being that I was one of the lucky ones to be blessed with that title – but I’d argue that I’m simply a realist. I’ve dealt with the reality of being a survivor and what it has thrown at me and hopefully prepared myself for what it will eventually throw at me as well.

And my story and my outlook – though unique to me – is not new to other survivors. The questions, grief, paranoia, guilt, and uncertainty that comes with being a survivor is far reaching. More often than not survivors can feel stuck in a life of tension and conflict. Being uncertain on what comes next, how to feel after conquering life’s biggest challenge, and why does reality seem so drastically different?

As a Ulman Foundation board member, I interact with patients and survivors frequently, and hearing their stories and our unfortunate similarities is a common occurrence. I am often nodding and thinking to myself “I feel the same way” when a survivor says something like ‘it’s so hard for people to understand the burden that survivorship has” or “I feel that my life’s purpose is to live to the fullest amount possible no matter what” or when they tell me they struggle with the bigger questions of why?, how?, and what now?

I never know how best to comfort a survivor other than relating to the uncertainty – or the oddities that survivorship entails like strange triggers, quirky social interactions, or common frustrations. The closest analogy to the bond survivors share is perhaps the one that siblings or cousins have – we are unique individuals and experiences but with commonality that is somewhat hard to define or believe but it’s an undeniable connection.

For me, it’s hard not to think about Jason, Josh, Suzy, and Cait when meeting fellow survivors. Asking myself why isn’t he or she the one supporting this fellow survivor instead of me? But I also think about how my experience gives me the benefit of bonding with others, sharing more than just trauma, but the output that comes from cancer as well. People like Fausto, Ian, Matt, and Dan, whose fight and strength defined their survivorship by confidently taking on great endurance or physical challenges as their motivation and will power is unmatched and their thirst for this new life is nearly unsatiable. Or for survivors like Kim, Danielle, Jess, and Kinsey who have used their experience to find ways to connect and help others with compassion and understanding.

Our experiences as survivors unite us, our stories encourage us, and our bond is undeniable and sadly uncontrollable. We have been blessed and cursed to be labeled survivors. For that, our lives are inextricably linked. Survivorship is not just a title or an achievement of the fortunate and strong, it’s a cursed abnormality. Just like the mutated cancerous cells that formed inside our bodies. We don’t get to simply ignore it or distance ourselves from it.

Survivorship — and the experience that comes from it — can be a badge of honor and a horror at the same time. It can be a motivator but also a manic episode inducer. It is an achievement a patient dream of, but also no patient is ever prepared for when they become a survivor. Survivors are often stuck in a place of contradiction, tension, and conflict. We want others to know that we are strong, resilient, proud and privileged to be alive, but also don’t want our identity to be shaped by the disease we had no control over obtaining. And in turn defining the rest of our lives by. We want to start our lives back again, but have even more enormous hurdles to get back to ‘normal’ (or what we might believe is normal) — we might not be able to ever work again, exercise, have kids, find a partner, pay for a home, or maintain meaning relationships that understand the struggles we have been through. We want the stigma to be removed, but the cancer journey can’t be reversed or altered.

And that’s where community, connection, and courage become even more vital to survivors. The community to lean on when it feels like we are on an island, alone with our experiences and struggles. The connection to know that together we can rely on each other to navigate this sacred second lease on life that we have now. And the courage to be vulnerable, honest, and unashamed of being a cancer survivor and allowing the title to truly be a badge of honor and a way to bond with fellow survivors – and not a label that feels like a curse.