That year, I began to experience recurring migraines. I did everything I knew to stay healthy, but it didn’t seem to matter. The headaches kept coming, and so did another symptom. On off days, I would sleep a good 12 hours straight, get up and do something, and then sleep 6 more hours that day!
I finally did the adult thing and made an appointment with my primary care physician. The doctor diagnosed me on the spot with chronic fatigue syndrome and told me to go home and rest as much as possible.
An unexpected ER visit
Another few weeks went by and I was set to go to Las Vegas for my bachelor party weekend. I stayed with my parents the night before so my brother and I could drive up together. That’s when it happened: another excruciating headache woke me up at 2 in the morning. My mom found me downstairs throwing up and immediately took me to the emergency room—she’s a nurse and she could tell something was not right.
At the ER, I was taken back quickly so doctors could order a CT scan and an MRI. As the situation continued to develop, I remembered the reservations we’d made for that weekend in Vegas. We’re going to be late, I kept thinking.
Brain surgery instead of a bachelor party
The doctor came back in and told me that the MRI showed I had a mass in my right frontal lobe and that I would not be going anywhere. There went my bachelor weekend. I got the news that I would be having emergency brain surgery the next morning.
“I got the news that I would be having emergency brain surgery the next morning.”
The surgery went well, and afterward, I felt good. I finally stopped having the headaches! And I didn’t hear anything from the doctors for about 2 weeks.
Awaiting the news
I thought that if the biopsy had showed something bad, someone would have called me. But my mom told me to call the hospital and follow up with them too, just in case.
I spoke to someone in oncology and learned that the physician assistant had forgotten to upload my pathology report—first red flag. About 4 hours later, the hospital called back again, saying they had an open consult the next morning at 8–second red flag.
I went back to the hospital and my parents came with me. I truly thought I was fine, so I told them to stay in the waiting room, but when the nurse saw me, she asked if I’d brought anyone along. When I told her my parents were in the waiting room, she said I should probably bring them in. Right there–third red flag.
Together, we were told by the doctor that the tissue taken from my brain was called glioblastoma, or GBM. Cancer.
I was still fairly upbeat. I said, “Doc, whatever we gotta do to fight this, give me double of it. We’ll call this a bad experience and move on.” But she told me GBM was aggressive and had no cure.
Then my mom asked what the prognosis was. “Fourteen to fifteen months,” the doctor said. I still wasn’t getting it, though. “Until what?“ I asked. “That’s your life expectancy,” the doctor said.
“Telling my fiancée about my diagnosis was rough. ... So, I made it my mission
to fight like hell.”
Telling my fiancée about my diagnosis was rough. I told her we could call off the wedding if she wanted to, but she said she was along for the ride. So I made it my mission to fight like hell.
Giving Optune® a try
I started a treatment regimen that included chemotherapy and radiation. During my initial consultation, my oncologist mentioned Optune and I was immediately interested. Together with my healthcare team, I decided I wanted to try it.
Adjusting to Optune was a process. My doctor told me that the recommended usage for Optune is at least 75% of the time, or 18 hours a day. I worked with my Device Support Specialist (DSS) from nCompass™, Novocure’s support program, to learn how to use it.
I'd already lost some of my hair from the radiation anyway, but Optune is used directly on the skin, so nCompass provided an electric shaver for my head and that took care of the rest. For a while, my fiancée changed my arrays for me; then I started to figure out how to place them myself.
Time to adjust
People stared at me; that was tough. And sometimes the arrays irritated my scalp, but my doctor helped me to manage that side effect.
Throughout this period of adjustment, I was in a dark place. All I could think about was my life expectancy. I joined a support group with other GBM patients, and that helped a lot.
“I joined a support group with other GBM patients, and that helped a lot.”
Slowly, I got stronger and stronger. I saw a therapist for a while to help with the depression, but soon he said, “You’ve accepted your condition. You don’t need me anymore.”
Optune, marriage, and the future
My wedding almost didn’t happen because I was quarantined in the hospital due to side effects from chemo until the last minute. But my numbers jumped right when they needed to, and I got married to my wonderful wife surrounded by our friends and family.
We welcomed our first child into this world sometime after that. It was very important to us to become parents, but please be sure to talk with your doctor regarding family planning decisions.
With the okay from my doctor, I travel sometimes with Optune. I have a little adapter and charging block that I bring with me. If I’m flying, I try to get to the TSA checkpoint a little early. There’s a document that nCompass can send you to show to the agents.
I had everything figured out by the age of 26, and it was hard to let go when that all fell apart. But it helps me to remember that life generally doesn’t go as planned—for anybody!
I don’t live in fear of what may happen anymore. Instead, I choose to advocate, not necessarily by speaking, but by using Optune and letting people see it and ask me about it. In the meantime, I thank God for the time I have left here, and I hope I can be a comfort to others who may be in the same situation.