The scars of survivorship

My stomach, swollen and on fire. The incisions, healing, burn. Too much pressure, and it felt like they will rip apart. My belly, round, in a perpetual state of fullness, pregnant with remnants of fear and freedom.

My stomach is forever changed. It bears old scars, from teenage years and coming-of-age depression. But now five new scars cast wide shadows over these wounds, engulfing my body in sorrow and joy.

Last year, on September 30, at around 11:30 a.m., I learned that I had renal cell carcinoma – that I was among the roughly 74,000 Americans to receive that diagnosis last year. Less than a month later, I would have a radical nephrectomy, offloading a tumor roughly the size of my thumb and the left kidney it attached itself to. More than six months later, and I’m healing quite well—physically, at least. My 6-month labs and scans were clear; I hope they stay that way.

That’s survivorship: managing the constant fear of the worst-case scenario. At first, it’s hard to temper the anxiety; eventually, you learn to shove the fatalism down and smile for the cameras. But it’s always there, lurking in the background. Even if you are an eternal optimist, you will still carry this burden—every survivor I know does.

That’s the thing about cancer: the odds are never in your favor—not really. When I went in for my surgery on October 26, my urologist expected to perform a partial nephrectomy. My tumor was small—less than 5 cm. I was stage 1, and there was no spread. But when he went in, he saw that the tumor grew to close to the renal artery and vein. If he left even a small portion of my kidney, he told my boyfriend after the surgery, he risked leaving behind some cancerous cells—cells that would spread and fester and attack other parts of my body. He hopes that, by removing the entire left kidney, he has “stopped this thing in its tracks.” This hollow space—this dark cavity—now means a single-digit reoccurrence rate: upwards of 3%.

I know I, and other survivors of chromophobe renal cell carcinoma, should find solace in this small probability. But chromophobe renal cell carcinoma (or chRCC) is a rare form of kidney cancer, accounting for only 5% of cases. We have all survived a rare form of a rare cancer; that 3% might just be your bad luck.  And unlike other more common forms of cancer, there is hardly any research on chromophobe renal cell carcinoma. Other than surgery, there are no definitive treatments in fighting the disease—only promising possibilities. We can’t afford to lose our remaining kidney if the cancer comes back; we couldn’t afford to lose the first one in the first place.

But survivorship means more than living my life in a permanent state of chaotic peace—an unsteady sway between gratitude and pain. I also must navigate the ramifications of a life-altering experience.

My son is forever traumatized; anytime I have a doctor’s appointment, he’s afraid I’m going to die. My relationship has been tested and pushed to its brink; we’re strong, but there’s still so much we don’t understand. And I now live my life under constant surveillance; the function of my remaining kidney is 64%, which is low but still in normal range. If I want to prevent chronic kidney disease, I need to pay close attention to what I eat.

It’s hard, sometimes, to not come undone by what’s been left behind.

In the mornings, when I’m getting ready, I will look in the mirror and follow this new topography of my stomach. I will look at the scars with an uneasy grace, knowing that each peak and valley formed because of an illness I never knew was there. I will look at it and wonder if there was ever a “before.”

More than six months later, and my stomach continues to be hard to process—to understand. The folds invade this space, once smooth and flat and hard. Navigating the contours of an unexpected detour, my fingers tracing lines never meant to exist. A daily reminder of what I have lost—and everything I have gained.

This guest post is by Annamarya Scaccia, a writer, fitness expert, and kidney cancer survivor. Follow her on Instagram @stillwellfitness.