My GBM Story: Mark
On May 4, 2020, Mark Cesarano celebrated a very special anniversary: Four years since he was diagnosed with an “inoperable” glioblastoma.
It’s especially fitting as May 4th is known affectionately as “Star Wars Day” among fans, and marked on social media with #MayThe4thBeWithYou — a play on the film’s famous line, “May the Force be with you.”
The Force is definitely strong with this one.
Mark is a force within the OurBrainBank community, actively offering his expertise as an insurance consultant to give free financial advice to his GBM peers.
I will do anything that helps me, doesn’t hurt me, or helps somebody else.
Before his diagnosis, he was extremely active in other ways, especially at the gym. That is where he noticed his first symptom — a pain on his left side — although he attributed it to a pinched nerve, and continued to work out for another 45 minutes.
When the weakness lingered much longer than he would have expected, Mark called his doctor, and was rushed in for imaging. An initial CT scan ruled out a heart attack, but led to the damning statement: “There’s something wrong with your brain and we can’t fix it.”
Rather than go to the local cancer center, New Jersey resident Mark went to an MD Anderson affiliated facility, and had to wait an agonizing week-and-a-half for MRI results. He was told his tumor was glioblastoma, and that they could not operate because of its location along a muscle strip. So he was scheduled for standard chemotherapy and radiation.
“I accepted it because the doctor was so strong in his convictions,” Mark said. “But then later I thought, if you want to buy a TV or a car, you shop around. Why shouldn’t it be the same with this?”
So, the day before he was supposed to start chemo, Mark called for a consultation at the University of Pennsylvania and was seen straight away. The team assured him they could operate on his tumor and quickly arranged it.
Warned he probably would not make a full recovery, Mark nonetheless pushed through rehabilitation and walked constantly — including the 1.5 miles to physical therapy appointments. His mobility has declined since, but his neurological function never has. “My mind still goes a million miles an hour,” Mark said.
He puts that activity to use helping others. Nearly every day he finds himself counseling other GBM patients or carers from around the world about benefits, insurance and other financial concerns.
Mostly he listens.
“I’ve learned that no matter where you are in the world, the treatment is the same, the frustrations are the same,” Mark said. “I think people like to know there’s somebody else out there who is going through this, and they are grateful just to talk.”
Mark has beaten the odds in many ways. He’s never had a recurrence.
“I don’t know why I’m still here when so many others aren’t. But I try to help in whatever way I can.”
View one of Mark’s presentations (visual only, no audio) he gave to OurBrainBank Voices. He covers benefits, insurance, disability, Medicaid, and finances for people living with GBM. (For informational purposes only, check a professional in your area for more up-to-date information.)
Update: Mark sadly died in September 2020 — not of GBM — but a sepsis infection and pneumonia.