(Grey) Matters of the heart
Part I: Buckingham couple rocked by husband's brain cancer diagnosis
She walked down the aisle a touch too early. He, still in the back, made a quick dash to the altar.
When they finally stood face-to-face inside the church, Jason Chmel and his wife-to-be, Marissa, looked at each other and giggled, their smiles intimating a mesh of nervousness and excitement.
They exchanged “I dos” in a traditional Catholic ceremony. They pledged to love each other in sickness and in health, to be at each other’s side 'til death do them part.
A few weeks ago, Marissa looked into Jason’s green eyes once again. This time, it was she who needed to hurry – the opportunity to converse “normally” might not last long.
The words she spoke echoed her wedding vows: I love you and I’m going to take care of you, Jason. I’m honored to take care of you, and I’m so happy that we met.
Quickly, she ran across the hallway to get Jason’s friend. You have to come see this; Jason’s back to his normal self, she told him.
But it was already too late.
She was gone only seconds, but when Marissa ran back into the room, Jason was looking to the right, staring into the distance – the excitement erased from his face, the corners of his mouth cemented in a frown even though he wasn’t sad.
“I hate this cancer,” she told him.
When Jason was diagnosed with glioblastoma multiforme (GBM), the most common and most aggressive type of malignant primary brain tumors, doctors told the Bucks County couple that this type of cancer might alter his personality.
That’s no big deal. It’s not like losing your vision or ability to walk, Marissa thought at the time.
“I didn’t realize what an impact changing your personality has,” she conceded one year later.
“He is not the person that I married. He is somebody completely different. And that’s really hard because I see him, but he’s not Jason. The person he is … is no longer there.”
GBM grows like "a weed in the brain," Marissa said, feeding off blood supply and producing rapidly. It is more common in men, according to the National Brain Tumor Society (NBTS), and represents 54 percent of all gliomas, a term used to describe tumors that arise from the “gluey” tissue of the brain.
The median survival rate, the NBTS website notes, is 15 months; the five-year survival rate is just 4 percent.
Jason, 42, is the father of a 3-year-old and 6-year-old boy.
The diagnosis has, understandably, devastated this young Bucks County family. Not only is Marissa, 35, daunted by the probability of losing her husband, but when Jason was diagnosed he did not have health insurance, having lost his job of 15 years one year before his first tumor was discovered.
To date, Jason’s had three craniotomies, radiation and is undergoing his third round of chemotherapy.
Still, the hardest part, said his wife and primary caregiver, is the helplessness.
Jason's cancer is located in the right frontal lobe of his brain, the area that tells us how we feel. It’s plunged him deep into an emotional abyss – and it crushes Marissa not to be able to pull him out.
“He’s in there somewhere,” she said. “But it’s like he’s locked away.”Their story
Jason and Marissa were employed for the New Jersey Network in Trenton, N.J., when they met and fell in love.
They married in 2005 and purchased a two and a half-acre slice of Buckingham suburbia in 2008. Their first child, Emilio, was born in 2007; they welcomed a second son, Marcello, in 2010.
The couple, however, lost their jobs – and their health insurance – in 2011 after it was announced that the public television station they worked for would no longer receive government funding. Unbeknownst to Marissa, her husband canceled his life insurance policy at that time.
Their search for employment was derailed when Jason’s father was diagnosed with sarcoma and colon cancer in the spring of 2012. Jason, Marissa and their boys opted to spend as much time as they could with his parents, who lived in a Pittsburgh suburb, a one-way drive of about five hours.
By August of that summer, Jason’s father was on life support. Jason, although stressed by his father’s illness, was the picture of good health.
That all changed when Marissa discovered her husband passed out on his mother's floor, breathing heavily and foaming at the mouth.
He was rushed to a nearby hospital, where doctors confirmed he had had a seizure.
Further testing revealed the cause to be a mass in his brain.
No time to think
At first, the news didn’t seem real.
“It felt like somebody had just hit me over the head. I almost passed out," Marissa said. “... We just looked at each other like is this really happening? How can two people [in the same family] have cancer at the same time?”
The Chmels left the Pittsburgh area on Aug. 24. They immediately contacted a Philadelphia neurosurgeon, but because he didn’t have health insurance, Jason had to be admitted to the Pennsylvania Hospital Emergency Room before diagnostic tests could be performed.
On Aug. 27 – three days after coming home – doctors informed Jason that he was going to need a craniotomy, and that it couldn’t wait. His surgery was scheduled for the next morning.
That Monday evening, still in shock, Marissa climbed into her husband’s hospital bed.
“We just held each other all night long,” she said. “I said everything I thought I needed to say to him because I didn’t know if that was going to be our last time together.”
During surgery, doctors were able to remove a large chunk of the tumor, which they later determined to be glioblastoma. Although the tumor had begun to dull the intensity of his emotions, Jason retained his motor skills, and there was some comfort in the fact that he didn’t require occupational, speech or physical therapy after surgery.
But that comfort was short-lived. Two nights after his operation, Jason's father passed away. Jason, still recuperating, wasn’t able to attend the funeral.
In the beginning of October, Jason began radiation treatment and started taking chemotherapy pills at home.
However, a few days into treatment a MRI revealed he had another tumor the size of a plum.
A second craniotomy was immediately scheduled, and when it took place Jason had partial health insurance through a temporary state plan.
Jason’s second operation proved even more successful than the first, with his surgical team resecting nearly all of the tumor. This time, follow-up treatment began within a couple of weeks.
For six weeks, Marissa drove her husband down to Philadelphia, Monday through Friday, for radiation treatment. Again, he was given a pill form of chemotherapy.
He ended his treatments before Thanksgiving and for their children's sake, the couple did their best to celebrate the holidays.
When doctors discovered the growth of some cancer cells in January, they put him on a drug that works to shrink blood vessels, which the cancer feeds on.
Jason also began using – and wearing – a device by Novocure that uses electric fields to disrupt the rapid cell division of cancer cells and slow tumor growth, according to the company’s website.
A month later, however, Jason was dropped by his insurance. He wasn’t able to see his doctors for a month or continue on the drug, called Avastin. He was, however, able to continue using the NovoTTF-100A System.
In early spring, Jason was able to secure health insurance through the state; he also qualified for Social Security.
That's when things started to look up. The Novocure device seemed to be helping. Marissa was able to pick up a part-time retail job and Jason was more independent.
The couple wanted to believe the cancer was in remission.
But, as Marissa acknowledged, glioblastoma “never really does go into remission.”
A turn for the worse
On July Fourth, Jason started to behave strangely. A MRI detected another plum-size tumor in the same location as before.
At the time, Marissa didn’t freak out. They had weathered this nightmare twice before; they can do it again, she thought.
A third craniotomy was scheduled for just one week later, but the short wait proved to be the ultimate test of their wedding vows.
Jason began to act completely out of character. One day, Marissa found him reading a book in the bathroom. He was naked and had left the door wide open even though his mother was staying in the house.
He was also being rude, hurling vulgar words at his wife.
“And he’s not like that at all,” Marissa said. “He’s never even cursed at me.”
Marissa pressed on and continued to work while counting down the days to Jason's surgery. But when doctors informed her Jason's third brain surgery would be his last, her world came to a crashing halt.
“That’s when I went crazy,” she said. “That point was the lowest – when it really hit me that Jason can really be gone, that he’s going to be going soon.”
She then asked her bosses to take her off the work schedule.
Jason’s third craniotomy took place July 19. Initially he did well, but unlike before, he needed help getting to the bathroom after his catheter was taken out. Because he struggled to move, he kept urinating and soiling himself, and he was forced to wear a diaper.
“That was another low point for me,” his wife said.
Following surgery, Jason’s face drooped and he displayed no more emotion. It was as if he had just shut down, Marissa added.
She kept thinking Jason just needed more time to recuperate – that he would get better after a couple of days.
He never did.
Part 2 of the Chmels’ battle against brain cancer continues in next week’s edition of the Herald.
Copyright ©2013 Bucks County Herald, Inc. All rights reserved.