Surviving Survivorship

No one prepared me for survivorship. No one braced me for how much harder surviving cancer would be than it ever was fighting it. No one told me it would be impossible to reclaim a life that once existed before cancer crudely intruded. No one informed me that my pre-cancer body was gone forever, replaced by one riddled with scars, both conspicuous and invisible. No one warned me that I would never again live a life unaffected by cancer. And I so badly wish someone had.

From the moment my gynecologist felt the lump that brought me in to see her, every healthcare professional I saw had the same worrying concern in their eyes that pierced through mine, each time bringing the unfathomable closer to reality. That I had advanced cancer, and my body brought it on itself. My blood pressure spiked each time I heard this as I drowned in an ocean of fear and panic. One of the first lessons I learned, though, after receiving such a staggering diagnosis was that doing something helps. Starting treatment, checking off appointments, cold capping one less day, ringing the bells, anything that got me a step closer to the end of active treatment made me feel more in control and that I was fighting against a body trying to kill me. And I had a team of people leading the charge on this.

From the moment I was diagnosed with stage 3 breast cancer, I was constantly monitored and well cared for. I had an army of doctors, nurses, friends, and family members who either designed my entire treatment plan or were with me at every milestone. Every appointment was scheduled for me. Every symptom was addressed immediately. My army was persistently laser-focused on the next step, preparing me for what I was up against every step of the way which enabled me to keep pushing forward. There was always someone on my medical team to explain what was happening and someone on my personal team to sympathize with how unfair it was. Once active treatment ended, though, that all ceased to exist, and I found myself suddenly alone. From the onset of my illness, all I wished for was to be cancer-free and done with all the poking, prodding, and poisons in my body, so I was rather stunned to discover that being cancer-free was not at all what I expected. That survivorship, indeed, would be the biggest challenge I would ever face.

Before cancer, I was active. Really active, at least compared to post-cancer me. I thrived on long-distance hikes and summiting mountains. I moved to Colorado for this reason after all. The thinner the air, the more alive I felt. But I took for granted the ease in which my body produced energy and my mind supported these spontaneous endeavors. For all those grueling adrenaline-fueled adventures I loved would become extraordinarily daunting on the other side of cancer. Walking out the door for a short, pitifully tame hike now feels like I am setting out to climb Mount Everest, nearly two years after my body rid itself of the disease. I wish someone had equipped me for what life would be like once I entered survivorship so that I had an opportunity to adjust my expectations. For I planned on hitting the ground running after losing a full year to cancer, picking up right where I left off before the diagnosis, and with my army continuing to uplift me in that pursuit. But neither scenario could have been further from the truth.

My support team was with me when my hair fell out, but not when it grew back in. They hugged me when surgeons cut incisions into my body, but not when they healed into scars. And they cried with me when my life completely fell apart, but not when I tried to piece it together afterwards. And this is what I wish I knew would happen at the onset. That everyone would be in my corner when I had a cancer-riddled body, but not afterwards. Seeing me sick and looking like a shell of myself fighting for my life was a fight they understood. But to provide the same support when my port was removed and hospital trips became infrequent as I navigated a whole new life I no longer recognize proved incomprehensible to those who haven’t walked this path.

For those of us with a prognosis of “intent to cure”, people think that the one-, two-year battle full of regular infusions, daily radiation, multiple surgeries, and horrendous side effects is the fight and when we need encouragement the most. But now on the other side of it all, I am discovering the real battle is now. Cancer stole so much of not only my body, but the spirit of the person I once was. The realization that I will never be the same person I was before cancer no matter how much I try has been startlingly painful. And this is what no one explained to me. That those in my circle celebrate the good riddance of cancer, but not the struggles of survivorship. Since I no longer look like a cancer patient, the battle has since become a private one as my army has moved on from cancer without me.

It wasn’t until I was around other cancer survivors for the first time seven months after active treatment concluded, that I learned loneliness and grief are completely normal feelings in survivorship. As is the debilitating feeling of inadequacy for not making the most of a life post-cancer every day. But the reality is that not every day can be like that. That reclaiming life as a survivor takes time. Time to build a completely new person out of yourself. Time to understand that cancer still lurks in the shadows wherever you go. Time to grieve the person whose life cancer wrecked, yet also time to accept the person who rose up from those ashes.

This is what I hope someone going through treatment right now or receiving a diagnosis or entering survivorship or supporting someone through any of it can take away from my experience. The fight does not end with the words “you are cancer-free”. In many ways, that sentence is just the beginning and survivorship is where the real fighting, healing, and enduring happens.

I have been very fortunate to befriend other cancer survivors who I share a bond with unlike any of my other friendships, and those connections have been my saving grace in survivorship. Spending time with people who are walking this same path as me has been incredibly empowering. No one understands the struggles of survivorship better than them. Truthfully, I didn’t want to bring more cancer-related things or people into my life during treatment, but in survivorship, those are the people I seek out.

So, for anyone in the fight right now, in whatever capacity, I hope you find that connecting with other survivors will help you, too, in ways you can’t fathom until you are in survivorship yourself. Survivorship requires an army, but that army may look different than the one you had in the before. And that is okay. For the best army in the after, in survivorship, is comprised of the brave people who have fought and won the same battle you have, just before you.