My brother and I have always been close. I’ve always been a leaf in the wind. Never quite sure what to do with myself when I grow up. I’ve ended up being many versions of myself, ever-changing with my head stuck between the pages of a book, dreaming of abstract things … mostly free of adversity.
The funny thing about adversity, like when your brother comes home with an unknown illness, you end up becoming exactly who you are supposed to be.
Here I was standing over my brother, this leaking brother, the abstract painter of red. I found myself holding pressure on his arm as I mashed every possible button I could find. Someone would come, someone had to come.
Imagine my horror when a random voice from the intercom piped in and asked, "Can I help you?" with a nonchalance that might as well have been a foreign language. This voice from the ceiling did not understand the gravity of the situation. "CAN YOU?!" I barked back to what felt like no one.
And after what felt like an eternity—the professionals found their way and relieved me of my amateur duties. As I washed my hands, I couldn’t help but notice the symbolism of my brother’s blood swirling into the void. We were 3 months into this brain cancer thing. This moment is just one highlight along a surreal path since JB had been diagnosed with glioblastoma.
Tests, hospitalizations, and treatments
For the 2 months prior to this diagnosis, my brother was in excruciating pain, and we were clueless as to why. We tried to get help. During our first attempt, an emergency room visit, we were told the CT scan was negative and that ruled out anything serious. Whew, we went home thinking it was likely a pinched nerve or muscle spasm. So, we waited.
Unfortunately, that was just the beginning. Hospitalization, surgery, diagnosis, more surgery, rehab, radiation, chemo, more rehab, more radiation, more chemo, etc, etc, etc. It was dizzying. Despite having the knowledge that it was a brain tumor, we still felt lost.
I remember one of the surgeries left JB with short-term memory loss. Tentatively, I broke the news to him: JB, you have brain cancer. Even forming those words was a difficulty. He’d take it all in, with a level of dignity I’ll never understand, and then promptly forget it. Until the next day when we’d perform this routine again … and again.
Optune as a treatment option
After my brother underwent surgery, radiation, and chemotherapy, his neuro-oncologist suggested another treatment—Optune®. Soon enough, a Device Support Specialist from nCompass™, Novocure’s support program, was at our doorstep, Optune in tow. I was trained on how to prepare my brother’s head, how to change the arrays, and how to manage the alarms. I remember the poetic irony of having to shave his head for the first time. His hair had just grown back from the radiation!
nCompass was and is instrumental in guiding us along every path. Sometimes, there are not enough words to express the true gratitude you feel.
Adapting and growing
We readied our way with this treatment. There were some side effects though. JB experienced scalp irritation. With the doctor’s guidance, we’ve done well to keep it to a minimum. We still had to hide from the oppressive Floridian sun and all water-related shenanigans since Optune can’t get wet. But we rather enjoy being pale gremlins.
My brother had extensive physical limitations and detriments after his initial surgeries. It took a tremendous amount of hard work and dedication on his part to rebuild himself. I could not be prouder of him. He rose to the challenge and adapted, growing stronger day by day.
This is a roller coaster. I won’t pretend it’s been easy. As JB’s caregiver, I’ve made plenty of mistakes, and it is so easy to lose perspective. I remember right before JB was hospitalized, I must have slept 13 hours in 13 days. I had to learn to take care of myself in order to take care of my brother.
Positive attitude and determination
Despite everything, JB has kept the most positive of attitudes and fought every step of the way. I can’t imagine a more inspiring person.
I never would have imagined I would be bragging about how far my brother has come since he was first diagnosed. But thanks to the teams of amazing individuals, the right resources, and my brother’s determination, I dare to whisper words that start with the letter H.