(Grey) Matters of the heart
Part II: Glioblastoma has changed their lives, but not their love
In Part I of “(Grey) Matters of the Heart,” readers met Buckingham residents Jason Chmel, 42, and his wife, Marissa, 35, parents of two young boys. Jason is battling glioblastoma multiforme, an aggressive form of brain cancer. His third craniotomy, from which he never fully recovered, took place July 19. To read Part I, click HERE
A new reality
His “flat” facial expression would have you believe Jason’s mind is off wandering, or perhaps he’s just not into the conversation, but that’s not the case. He knows when someone is speaking to him, but his brain – traumatized by cancer and surgery – has trouble processing a response.
“Unless I talk to him, he won’t initiate a conversation,” Marissa said. “Like if you talk to him, he’ll answer you. But he won’t say, ‘Hi, how are you doing?’ unless you do it.”
Before his cancer battle, Jason was an adventurous person who loved to travel and be physically active. He was an avid snowboarder. One of the things he wishes he could still do, he said, is play tennis.
Now, there are times when Jason "forgets" how to use his muscles. When that happens, Marissa, who helps dress and bathe her husband, will physically move his legs for him.
“If he overthinks it, he can’t walk down the stairs, so I tell him to go with his instincts – just walk, don’t think about it, because when you overthink you can’t do it,” she said.
Jason, who now sees an oncologist at Doylestown Hospital, often keeps his head turned to the right, which is attributed to the location of the cancer. He can’t be left alone in case he were to fall, Marissa added.
It’s also extremely hard for Jason to be affectionate, at least in terms of how he used to show love. Marissa believes her husband retains an instinctual connection with his boys.
“When he sees them, he smiles because they’re his children. But I don’t know if he feels the love anymore,” she said.
At random intervals, parts of Jason come back. When that happens, it feels like her husband has woken up, Marissa said.
But it’s devastating when those fleeting moments come to an end, and sometimes, Marissa conceded, she doesn't recognize the man that’s left.
“It sounds really harsh when I say that, but it’s the truth,” she said. “I still love him, and I’m going to take care of him. And it’s not because it’s my duty as a wife, it’s because I love him. But that’s the saddest part.”
Emilio, their eldest child, knows his father has cancer; Marcello, however, is too young to understand.
As a mother, Marissa walks a tightrope, at once shielding her sons from distress while being honest about Jason’s condition.
“I’ve never used the words ‘he’s going to die,’ but I said, 'Daddy will never get better from this,’ because I don’t want to give them false hope,” she explained.
Emilio, she added, is an “old soul” who hasn’t been fazed by the physical changes in his father.
“Nothing has freaked him out. He sees the scars. He knows that Daddy has deficits now,” Marissa said.
The Cold Spring Elementary first-grader even helps his father work on his book of word puzzles. He’s aware that Jason struggles with his short-term memory and will often tell his mother that “they’re going to help Dad remember.”
Marissa has signed her kids up for the cancer support programs offered by Gilda’s Club Delaware Valley; Cold Spring Elementary is also aware of Emilio's situation. Thanks to Community Education Centers on Cold Spring Creamery Road, her boys were able to enjoy summer camp activities and “just be kids,” Marissa added.
Other groups have rallied around the Chmels. Friends and family have organized a Meal Train, freeing Marissa from the burden of cooking dinners. Our Lady of Guadalupe Church in Buckingham, where the Chmels are parishioners, has been very helpful, and so has one of the Chmels’ neighbors, who's assisted Marissa with lawn care and property maintenance. Edgar Tree and Lawn Services also cut down dead trees on the couple’s property.
But until recently, many in their greater community did not know about Jason's cancer battle. Jason, his wife explained, didn’t want people to feel sorry for him or his family.
“I didn’t want to ask people for help, and I don’t like the pity look people give. Especially when you tell them your husband has brain cancer – their face really drops,” Marissa added.
The pressure, however, to keep it together is enormous, and most days Marissa feels the weight of the world on her shoulders. She takes medication to help her sleep as well as anti-anxiety medication to keep her focused.
“In order for myself to stay sane, I just think about every day’s tasks. If I think about the future I break down,” she said. “I know what’s going to happen. It’s inevitable.”
But keeping Jason's condition private, she recently realized, didn’t helped matters.
“I felt like I was feeling guilty about something," she said. "Like we were ashamed of this illness. I couldn’t keep this heavy burden on my shoulders.
“On the inside I was dying, but on the outside no one knew.”
Shouting it out to the world
A couple of months ago, Marissa started telling everyone about Jason’s cancer battle, including her friends on Facebook, Emilio’s principal and her fellow parishioners.
Brain cancer has shattered her life, and yet it's also given Marissa a sense of purpose, one that she said she's been searching for her entire adult life.
“The only time I truly feel good, is not only when I’m taking care of Jason, but when I’m fighting for this cause and I’m trying to bring awareness to it. I feel like I’m not only helping Jason, but I’m helping other people with brain cancer,” she said.
Compared to other types of cancer, glioblastoma doesn't receive tons of publicity. The revelation that former Philadelphia Phillies catcher Darren Daulton is battling glioblastoma has shed some light on the disease locally; still, there really aren't any celebrity faces attached to awareness campaigns or national fundraisers, Marissa said. And while there are tons of pink ribbons one can purchase to show their support of breast cancer, it’s hard to find ribbons in grey, the color of brain cancer, she added.
Marissa hopes her family's story will help change that.
A few weeks ago, she put up a banner, visible to drivers, outside her home on the corner of Holicong and Mechanicsville roads. The banner reads “Grey Matters.” A sign with a picture of Marissa kissing Jason’s head accompanies it.
“I just want to bring [brain cancer] awareness and a reminder that every day is precious with your loved ones,” Marissa said. “I’m not trying to depress people, but I’m just trying to wake them up because we get so self-involved and self-absorbed, especially when school starts happening. We forget the little things, and hopefully that will remind people to take the time out and just spend a little extra time with their family or friends.”
Marissa also wants others to learn from her mistakes. She encourages spouses to share the responsibility of managing their family's finances, to store important documents in a safe place familiar to their partners, and to know each other’s passwords – these tips can help ease the burden of filing paperwork in the event of life-threatening illness or death. She also encourages everyone to get a living will.
Making the most of life
Jason, who was given 18 months to live, is 13 months into his cancer battle.
“The reality is that we just live each day like it’s his last, because we don’t know when he’s going to die. It could be tomorrow. It could be next week. It could be next month. We don’t know,” Marissa said.
Brain cancer has taught the couple to celebrate life, to splash their world with color and paint over the “grey.”
Though the Chmels were devastated by the news that Jason would need a third craniotomy, it didn’t stop them from going to South Street and enjoying the best cheesesteaks of their life, Marissa said. There are times when Jason’s humor shines through, and the couple can share a laugh or joke. And recently, Marissa “popped the question” to Jason; the couple plan to renew their vows 11 a.m. Friday, Sept. 13 (open to the community) – on their eighth wedding anniversary – at Our Lady of Guadalupe.
On bad days, when Jason struggles to talk, he writes. One day, Marissa asked her husband to jot down what he thought about her. Next to her name, he drew a heart and scribbled it in.
He can't always convey his gratitude, but Jason is aware of his wife’s sacrifice and dedication.
A few weeks ago, as he sat next to his wife on their couch, Jason looked into Marissa’s brown eyes and began to gently rub her neck.
"She is amazing," he said softly when asked to describe his spouse.
To his wife, Jason is no less amazing. To her, in fact, he’s a warrior.
Jason takes each day as it comes and said he tries to approach every day with a positive attitude.
“He’s been such a trouper. He’s such a fighter,” Marissa added. “Never once has he complained. Not even after the surgeries. Not once.”
The two gather strength from each other.
Brain cancer, Marissa said, can make or break a couple. It’s tested their wedding vows over and over again, but their love has survived and they continue to battle – together.
“The journey has strengthened us, and it’s strengthened me,” Marissa said. “I didn’t know I had it in me. I didn’t know we had it in each other.”
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