I consider my life to be a charmed life. Well, that’s not entirely true. It’s been a happy, fulfilling life, just with its fair share of strife and shortcomings. But attitude is everything. I find if I meet every challenge with a positive attitude, the journey and the end result seem to turn out for the better. Now, I will assert, I’m not a strong person by any capacity. However, everyone around me has been exceedingly strong on my behalf, especially during tough times. None has been stronger than my brother, Josh, who has been with me every step of the way.
By John ‘JB’ Bird
I was living a happy-go-lucky lifestyle of poker and volleyball in Fort Lauderdale, Florida—sandcastles by day, chip castles by night. Suddenly, I started feeling symptoms of unknown cause: The absolute worst head and neck pain with bouts of nausea. I thought I could tough it out, but my condition worsened, and the symptoms persisted. The initial emergency room visit answered nothing. They didn’t see anything in the CT scan. Doctors investigated further, but to no avail—the leading theory being a pinched nerve, or perhaps I was faking. One way or another, it was all in my head.
We never stopped trying to find answers. After a grueling couple of months for everyone, a close family friend made sure I was admitted to the hospital for testing. She could tell my condition wasn’t a joke. Within 48 hours of being admitted to the hospital, I was recovering from brain surgery. So I’m living on borrowed time, but I think that in the most awesome way possible. Life is a gift.
Following my diagnosis of glioblastoma and hearing the subsequent prognosis, I was in a bit of shock. My life was flipped like a pineapple upside-down cake. Lucky for me, I love pineapple, so I made the decision to fight back. Following surgery, I relearned the basics: walking, feeding myself, and dressing myself—very much like a toddler.
Early on in my cancer treatment, which involved radiation and chemotherapy, my doctor introduced to me the idea of another treatment called Optune®. As I recall, I was initially concerned because I didn’t fully understand what it would be like, but I overcame my fears by educating myself about it. I went on Optune.com * and read the literature that my doctors and nurses gave me.
As I listened to my doctor’s recommendation, I also weighed my brother’s thoughts and spoke to someone at Novocure. Afterwards, I felt more optimistic that I could try it. With the knowledge that there is no cure for glioblastoma, and it’s difficult to treat, it only made sense for me to employ a multipronged attack in my fight. I was on board. When the time came, I was given the green light to start treatment.
Adjusting to restrictions
My day-to-day life continued on. I’ve been trying to wear Optune about 21 hours a day with some minor alterations. Yes, it felt somewhat cumbersome at first, but in a matter of a few weeks, I was at ease toting the backpack and adjusting to a couple of restrictions. Avoiding the inevitable heat of the Florida sun was a must.
I think I should also mention that after getting my doctor’s permission, there have been times when I’ve taken a short break from Optune, like for a special occasion when I go to the beach or botanical garden. I take precautions, though. When I’m at the beach, I leave my device at home if I’m planning on going in the water, and I wear a hat to help protect my head from the sun and heat.
Personally, I’m delighted to respond to people on the rare occasion when a stranger inquires about Optune. I find an open and honest discussion about my condition and the treatment is welcomed by listeners and therapeutic for me.
Ups and Downs
I want to let everyone know I’ve been feeling good. I experience the inherent ups and downs that come with life, but I have no real complaints. If you are in a similar fight, just know you don’t have to do it alone. There are support groups out there, and you shouldn’t be afraid to ask for help. If you’re having a bad day, find an outlet that works for you.
To paraphrase a thought, “When you can’t walk, you crawl. When you can no longer crawl, you find someone to carry you.” My brother has carried me through this. My friends and family have carried me through this. I’m fortunate to have a great team supporting me.
Come to think of it, okay, yes, I really have had a charmed life.
*Optune is a trademark of Novocure.
Last Editorial Review: November 19, 2018
Featured Image: Patient. Courtesy: 2018 © Fotolia. Used with permission.
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