by Steve Donie
This is the story of my brain tumor journey, a story that began long before I even knew I had one. It was March 2023, and I was living a seemingly perfect life. I had been a successful software engineer for over 30 years, married for 32 years, and blessed with two grown children who were thriving on their own. But life took an unexpected turn when I was laid off from my job, along with everyone else at my company, as it collapsed.
Navigating Life After Losing My Job
As I had done many times before, I started looking for a new job. Although I received a few offers, none of them excited me. My wife, sensing my frustration, suggested something new: “You’re close to retirement; maybe you don’t need to rush back into work. Maybe you could find something more fulfilling.” So, I began reflecting on what else I could do with my life.
Weeks passed, then months, and I wasn’t making any real progress. My wife grew concerned as she watched me spend hours scrolling through Facebook and Reddit, seemingly unmotivated and stuck in a rut. I couldn’t understand it either.
The First Signs: Losing My Sense of Smell and Memory Gaps
The first real clue that something was wrong came when I lost my sense of smell. However, this happened during the COVID-19 pandemic, when many people were experiencing the same symptom, so I didn’t think much of it. Then, in July 2023, I woke up one morning and realized I couldn’t remember anything from the previous day. I became incredibly anxious and started checking emails and text messages, trying to piece together what had happened.
Once I figured it out, I emailed myself about the incident and moved on. But when the same thing happened again in August, I knew I had to tell my wife. She insisted I see a doctor. The doctor, suspecting my cholesterol medication might be causing memory side effects, adjusted my treatment, and I thought the problem was solved.
Discovering the Brain Tumor
In September, when I experienced yet another memory lapse, my doctor decided it was time for an MRI. The results, which came in on October 16, 2023, revealed a nearly 5 cm meningioma located midline in my frontal lobes. My world shifted. Over the next few weeks, I embarked on the stressful journey of finding a surgeon. Fortunately, I found a specialist in Houston who focuses solely on meningiomas.
On the day of the surgery, it took nine long hours to remove the tumor. The next day, I woke up alert, and after spending a few days in the hospital, I returned home. Incredibly, my wife and I were able to host Thanksgiving dinner for friends just weeks after the surgery.
Post-Surgery Recovery and Emotional Changes
One of the most unexpected aspects of my recovery was the emotional shift I experienced. I felt more deeply than ever before. Sad songs moved me to tears, and I laughed harder at comedies. It was as if my brain, now tumor-free, allowed me to feel emotions more intensely.
However, the stress in my life wasn’t over. I still wasn’t working, and I questioned whether I could return to the work I had done for decades. My wife and I had been going through rough times, despite years of couples therapy and individual therapy. In January, we decided to separate.
A New Beginning: Starting a Handyman Business
I needed income quickly, so I began driving for Uber and taking on odd jobs. In February, I posted on Facebook that I was starting a handyman business. To my surprise, my supportive circle of friends rallied around me, and I quickly gained clients.
Now, in September, my handyman business is thriving. I recently had a follow-up with my neurologist, and she’s pleased with my progress. My six-month MRI in March showed no signs of the tumor returning, which was a huge relief.
The Road Ahead
On the personal front, my wife and I divorced, which has been incredibly difficult. But despite the challenges, I feel fortunate to have gone through this journey. I’ve learned so much about myself, including my ability to find the silver lining in tough situations. Although things are still rough, I’m optimistic about the future and believe even better things are on the horizon.
Conclusion
My brain tumor journey has been filled with unexpected twists and personal growth. From losing my job to undergoing surgery and starting a new business, this experience has reshaped my perspective on life. I’ve learned the importance of listening to my body, finding emotional depth, and adapting to change. While it hasn’t been easy, I am grateful for the journey and hopeful for what lies ahead.
About Meet Hope Head On
Because of the generous support from people like you, the ABTA has given over $35 million for brain tumor research. The ABTA’s campaign, “Meet Hope Head On,” created for our 50th anniversary, is focused on raising $50 million, in part to fund critical brain tumor research. This campaign is vital for continuing the kind of work that led to the recent FDA approval of vorasidenib, a breakthrough treatment for low-grade glioma.