By: Julianne Melvin, 38, Paraganglioma

I woke up in a hospital room, the air thick with the smell of antiseptic and the rhythmic, mechanical hum of monitors. I tried to speak, but only raspy, barely audible words escaped my lips, sounding like dry leaves skittering across pavement. I felt ready to vomit, a wave of nausea crashing over me with every shallow breath. At least I was alive.

I rang the nurse call bell with my one free finger—the only part of me that seemed to follow orders. My head turned slowly, and I saw the stricken face of my fiancé. He looked sweaty, his eyes rimmed with exhaustion, but he was wearing the most beautiful, relieved smile I’d ever seen. I had never felt more paralyzed in a bed. My mind drifted to how I was before the diagnosis, when I was well. I had pipes that could be heard on a theater stage, a voice that filled rooms and commanded attention. I was able to move freely, to run, to work, and to work out. I was a “doing” person, defined by action. Now, in this hospital bed, I felt like I was withering away, a spectator in my own body.

The Doctor suddenly came in, his expression a practiced mask of clinical neutrality. “The pathology biopsy has been confirmed,” he said. “You have metastatic paraganglioma, a rare neuroendocrine cancer. We just removed the cancer from your heart and lymph node in an eight-hour open-heart surgery with three cardiothoracic surgeons. Many students observed your surgery as well.”

“Great, now I’m a science project,” I thought. I imagined a lecture hall full of students peering at my heart as if it were a complex engine being dismantled. But little did I know, the cancer and the tumor were still playing hide-and-seek. A persistent tumor remained in my trachea. The Doctor told me I would have paraganglioma for the rest of my life. I had won the lottery! Just not the kind that comes with a giant check and a tropical vacation. I had been ganged up on by “Para Ganged Up On Me Oma.”

Para has ganged up on my body in several brutal ways. During the marathon surgery, the nerves controlling my vocal cords were damaged, leaving my left vocal cord paralyzed and my once-powerful voice reduced to a ghostly whisper. I carry a giant surgical scar that runs like a jagged lightning bolt from my collarbone to the bottom of my ribcage—a permanent map of the battle I fought. My sternum is held together by metal stents, turning me into a literal woman of steel.

I’ve since endured reconstructive surgeries to try and reclaim what was stolen. Just recently, I had surgery on my voice; it’s still healing, and the progress is slow, frustratingly quiet. As for the tumor in my trachea, it remains inoperable for now—ironically “too small” to safely remove, yet large enough to cast a shadow over my future. 

While cancer has wreaked havoc on my physical form, it has failed to touch my spirit. If anything, the fire inside has only grown hotter. This disease tried to silence me, but it forgot one thing: this tough old bird ain’t going anywhere anytime soon!