AJ Patel AJ Patel

Most people are shocked when I say I was finally diagnosed with Stage IV lung cancer in August 2013, as though it is a good thing.

You see, after 2 years of constantly having to clear my throat when speaking and a ragged hissing sound while exhaling, I was exhausted from going from one physician to another with no solution for my symptoms. The physicians were looking in all places but cancer. Why would they? They looked at their chart: 45-year-old male runs an average of 20 miles per week, non-smoker, eats healthily, Body Mass Index well within range, no family history of any cancer of any kind. Checking for cancer was just not on the radar. 

So yes, finally at 47 years old, getting a diagnosis was a relief, but I just couldn’t fathom: how cancer, how lung, and how Stage IV? If that wasn’t bad news enough, an MRI of the brain was ordered. It revealed significant tumors in the brain that needed a decision by me whether to radiate or have surgery. All this within 3 weeks of being told I have lung cancer. As you can imagine, I was totally dazed and stunned! I went into shock and an agony so, so, so deep in my stomach that I couldn’t sleep or eat. In an instant I lost the ability to smile and feel happiness.

I searched the vast spaces of the Internet desperately seeking assurance and hope, but all I found was destruction and despair. I felt so alone. I thought there is nothing more debilitating than the severe anxiety, but depression was already at my doorstep. For months after my craniotomy, I wallowed in my misery, all the while oblivious to the feeling of helplessness and severe pain hidden behind the mustered strength of my family through fragile smiles. Recovery from surgery and the gruesome radiation and chemotherapy tipped me to the edge, wanting to take my life to end the misery.

Around this time, a distant friend, whom I now see as my Angel, came along and said, “You are so busy dying that you cannot see the gift before you; gift your family by standing tall. Don’t you see their pain? Put on your battle gear as though your last, be valiant, and most importantly, gift us all by using the time to pave a better tomorrow for those that will walk in your diagnosis.” Those words stirred something so deep within, it was as though an explosion had occurred within and I was in another dimension.

From that day, I embraced the “gift,” actively seeking out those in the mission to turn this disease around. I became an advocate at first, helping other patients and caregivers as much as possible. In time, I wanted to know more about the science because research matters. As my science advocacy work grew, I was recommended to be a consumer peer reviewer for the LCRP. I was apprehensive at first, motivated only by research matters. I was placed with a mentor, as the science is waist high if you have no medical background. As I reviewed the many applications, I was bursting with hope for turning this disease around. It's time-consuming to review the application, but having a voice from a consumer standpoint that is respectfully listened to is so important, enriching, and humbling. All of the people involved from administrators to Scientific Review Officers and scientists are absolutely amazing, coming together to advance science, but most importantly to me, to provide hope.

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Last updated Thursday, May 26, 2022