My GBM Story

Hello, I'm Johnathan, and I've started this blog to share my story in the hope that it might provide comfort, assistance, or guidance to someone else facing a similar journey. When I was diagnosed with Glioblastoma (GBM), I scoured the internet for stories of hope but found mostly negativity and ominous predictions. I knew there were survivors out there, and each person's journey with GBM is unique. I'm newly diagnosed, having received the news on November 22, 2023, the day before Thanksgiving.

A bit about me: I was born in the small town of Arcata, California, and grew up in a loving family. I realized I was different at a young age and came out as gay at sixteen. Overcoming the challenges of growing up in a small town, I left at eighteen and eventually settled in Sacramento at the age of thirty-seven. I've been happily married to my husband, Ernest, for the past ten years. We share our lives with a furry friend, love to travel, enjoy Disneyland, and maintain close ties with our families. Our health struggles were typical—Ernest is diabetic, and I have high blood pressure, but nothing out of the ordinary. However, everything was about to change.

The beginning of my story: On that fateful night of November 22, 2023, as I procrastinated on making a Thanksgiving pie and worked on homework in my home office, a mild headache escalated. Headaches were not uncommon for me, but this one felt different. As I struggled to make sense of my statistics homework, I experienced a sudden difficulty in organizing my thoughts and felt a rising panic. Taking a break, I stood up and was hit with an intense bout of vertigo as I navigated the stairs. Feeling sick, I woke up Ernest, who noticed something was off. He suggested the emergency room, but I hesitated, thinking I might feel better. After ten minutes, panic set in, and we rushed to the ER.

In the downtown Sacramento emergency room, I underwent a series of tests—EKG, CAT scan, blood tests, and a chest x-ray. The nurse, concerned about my symptoms, hurried me through the process. After completing the tests, I was asked to wait in the waiting room. An hour later, a nurse asked for me to come back alone, and her ominous tone hinted at something serious. In the examination room, the doctor with pink hair delivered the devastating news—there was a walnut-sized mass on my brain, and it didn't look good. I was being referred to another facility, and an ambulance would be arriving soon.

As those words sank in, a sense of dread enveloped me. The reality of facing a life-altering diagnosis hit hard, and I turned to my husband. Tears welled up in his eyes as we grappled with the news. The pink-haired doctor's words echoed in my mind, and the looming uncertainty of the future left us in silent contemplation. My mom and sister arrived, offering comfort and reassurance, but the weight of the diagnosis hung heavily in the room, and tears flowed freely.

I found myself being relocated to a facility in a nearby suburb of Sacramento, specializing in both neurological issues and cancer. The doctor I encountered was not exactly renowned for his bedside charm, but he wasted no time in recommending the removal of the issue at hand. However, a twist of fate decided to play its hand – the MRI machines had chosen the night before my scan to go on a hiatus. Several painstaking days unfolded, where my predominant activities consisted of a mix between prayer and tearful moments – sometimes both at once. Once the stubborn MRI machines were back in action, the surgery was promptly scheduled.

The eight-hour surgery proved to be an intense experience for both me and my family, but the outcome was nothing short of remarkable. All the tumors were successfully removed, though, let us be real, it is never truly "all" – there are still traces lingering. And so, begins the next phase of the journey, with all of us on this path together. In upcoming blog posts, I will be unfolding more about this unexpected adventure, sharing the peaks and valleys, and perhaps discovering a glimmer of hope amid the uncertainties.

Buckle up for the next installment, where we will dive deeper into the rollercoaster ride that is Glioblastoma.