PARIS — “What grew back when they cut out a piece of brain” is the jarring, yet intriguing, title of Jen Cousins’ first blog entry written after she had a craniotomy to remove a brain tumor.
The Paris resident uses the written and spoken word to tell of her life-changing trials and tribulations in battling a brain tumor and its devastating side effects, the transformation into her new self, and share the sage advice of living every day as if it’s her last.
It was two years ago Cousins was diagnosed with a golf-ball sized brain tumor that was removed about three weeks after its discovery. It turned out to be benign but it still wreaked havoc on her life for years.
She shares she’d been sickly for two years prior to her diagnosis, “but it was nothing you could put your finger on.” A couple of times a week, she would vomit in the morning before starting her day.
“I would wake up with this terrible headache. Once I got sick, it would relieve my headache and I would feel better,” she says. “I would go on with my day. I was working three jobs. I was able to brush it aside.”
About a week and a half before her diagnosis, Cousins had a headache that just wouldn’t quit. By this time, the single mom was only working one job where she groomed dogs full time. After feeling terrible at work all day, she went home and crashed and so did her entire world.
“I went straight to bed. When I laid down, the whole room started spinning,” she remembers.
That’s when Cousins called her mom, a retired nurse, who suggested they take a trip to the emergency room at Stephens Memorial Hospital in Norway, despite her daughter’s worry that she had no health insurance.
To her surprise, Cousins first had a CT scan and then medical personnel immediately sent her for a MRI.
“They said, ‘You have a brain tumor and brain surgery is recommended. We’ve already spoken with the surgeon.’”
“I think I was in shock or I didn’t understand the weight of it at that point. They put me on some pretty heavy meds to relieve the symptoms so I was feeling pretty cool,” Cousins recalls, laughing. “I went home and went to work the next day and just kind of went through my day. … Then it hit me – I needed brain surgery.”
On the morning of her surgery, she found herself crying and feeling scared on the ride to Maine Medical Center in Portland.
“If there was any bravery, it came one week earlier when I told my son (Evan), who I’ve raised alone since he was one, the news. I did not get emotional when I told him that his mother would not be there for Halloween this year because she had to have surgery to make her headaches go away,” Cousins writes in her blog. “’I’ll have some really cool stitches on my head, just like the zombies in your video games,’ I told him. ‘Just in time for the holidays.’”
Cousins had it in her head – literally and figuratively – that all she had to do is to get through this major surgery to get rid of the brain tumor that was pressing on her optic nerve and everything would be fine. She spent two hours under the knife without any major complications, which left her with a serious scar that stretches from her left ear to the back of her skull.
“I pretty much, upon waking up, knew I was in huge trouble, that it was way bigger than I ever could have imagined in my head, that they could ever prepared me for,” she says. In fact, she’s contemplating writing another blog post about the things her doctor never told her before surgery.
Cousins spent five days in the hospital, where her world was reduced to a series of steps.
“It was getting out of the hospital in five days, then it was getting home, which was an ordeal in itself,” she says. “When they put me in the wheelchair to wheel down to the front [of the hospital], the moment of that just turned my whole world. … I was nauseous, everything was spinning and [I] got sick all over myself.”
And she continued to vomit on the ride home to Paris.
“That was just a car ride. This wasn’t facing my everyday life. I had started to understand the weight [of it] at that point,” Cousins says.
In her blog, she describes her homecoming. Her son, Evan – who Cousins described as her little “empath” (when one is affected by other people’s energies and can intuitively feel others) and a bundle of energy – peaked out his mini blinds in his bedroom after that grueling ride home. When he came out of the house, he slowly approached her, looking at her raw incision and she reassured him it was OK to look.
“Does it hurt?” he asked.
“It does,” I answered honestly, “but mommy is going to get better every day.”
“I had been home for only minutes when I realized that at the very least, my son and my dog did not see me in the same way they had before,” Cousins writes.
Cousins admits she had a “grandiose, perhaps overconfident view” of her recovery.
“It certainly was not going to be my first trial in life,” she says.
“I had confidence that my recovery would be quick and smooth and that I could battle through this challenge like I had with addiction and single motherhood and all the others,” Cousins wrote in her blog.
Her surgeon told her she had four weeks of recovery time.
“Three. I am going to do it in three,” she predicted.
“That’s not what happened at all.”
Her first and toughest challenge were the steroids, which were to keep the swelling in her brain down. She was supposed to be on them for five days and then gradually lower her dosage.
“Every time they tried to ween me off, I can feel it, I can feel my brain swelling,” Cousins recalls, noting the doctors told her she couldn’t feel that. “They run MRIs, sure enough, my brain would try to swell.”
She ended up in the ER four times with swelling on her brain and she had an episode of blindness where she could not see anything for roughly 30 seconds after sitting up.
“[It’s] all related to trying to get off of these steroids. … You don’t sleep on steroids. I was awake, no exaggeration, 18 hours a day, eating everything in sight. I ate three cheesecakes in a month,” she says, adding she’s supposed to lay down and rest during this time. Instead, she would spend hours pacing back and forth because of the anxiety the steroids caused.
She gained weight and she didn’t recognize herself and neither did her coworkers at the dog groomers.
“Meanwhile, all the symptoms I had prior to the surgery were amplified. They weren’t better, they were worse,” Cousins says, which included balance and sight issues, speech problems (slurred speech and losing track of her thoughts) and extreme fatigue. In her blog, she describes this time period as feeling as if fast balls were pitched at her cranium every day for five weeks.
She writes she “had long prided myself on a sharp mind and quick wit,” but the tumor and now the lingering and worsening symptoms had taken that away from her. While all of her problems were compounding, she became “unglued” and cried to her mother, tears flowing like Niagara Falls, about her getting worse.
“I was a writer. I thought it was gone forever and that is what that breakdown was. I don’t think I could come back all the way from this. How could I possibly come back?” Cousins recalls wondering, with tears beginning to form in her eyes.
The turning point in her recovery and regaining her life back was when Cousins hit rock bottom. It also happened to be the day of her one month check up with her surgeon (the alleged end of her recovery time), which was the first time she had seen him since her operation.
She describes her surgeon as a “super confident guy” who “did this beautiful surgery [but has the] bedside manner of a rock.”
“He comes breezing in. I still remember his white lab coat trailing behind him as he comes through the door,” she says, noting she was shaking as she always was during that time. She has a laundry list of symptoms she wants to him to fix and as soon as she starts talking, he puts his hand up to stop her. He tells her the symptoms weren’t from her surgery or brain tumor and she needed to see a neurologist.
Her heart drops. She had been waiting for this day for what seemed like the longest month ever to get answers to get her life back on track and now a neurologist appointment is weeks away.
“I am going back home to the same. No relief is in sight and um,” Cousins pauses, “I lost it.”
Not there in the doctor’s office, but a short while later on the floor of a public restroom. Cousins notes she was pretty private about who she would let see her struggle, which was her mom and her partner at that time.
“I went in a public restroom to pull myself together but that is not what happened. Instead I crumbled to that dirty public bathroom floor and cried until I couldn’t cry anymore,” she writes in her blog.
She doesn’t consider herself a particularly religious person, but she prayed to God that day.
“I just said, ‘I don’t know what to do, show me what to do,’ and I picked myself off that dirty bathroom floor, put my chin back up [and] took a nice silent ride home,” she recalls. “Even my mom was out of words at this point – she was devastated.”
The rest of that night was somber for everyone in the Cousins household. Soon everyone went to bed and she got her three to four hours of sleep. Every morning she would sit on her steps to feel the cool air on her head (since the surgery she can’t stand being hot) and listen to the birds in the nearby bush. She did the same the following morning.
“I sat out there and just kind of realized I felt lighter some how, not much else had changed but that. … I just kind of processed my muddled brain and said, ‘You have to get up. If you stay down, it’s going to be what keeps you down – you just have to get up,’” Cousins says. “I realized that God had answered me – I took that as my answer.”
So when her mom woke up later that morning, Cousins tells her she will return to work in a week and her mom’s jaw dropped. She promises not to give these symptoms anymore of her energy and made “I am getting up” her mantra. She now laughs about the exhaustion she felt in getting dressed for the first time in five weeks, but she was determined to return to work.
“I hobbled my way into work and started grooming and realized that I still know how to do that, that the dogs were going to aid in the healing that I needed,” she remembers as she wipes away tears. “I groomed a couple of dogs, I think she gave me three that day. I continued on grooming full-time for a bit and just the gratitude I felt is still a common theme today for everything I am able to do, for every moment I have.”
Even two years after her surgery, Cousins still runs across people who knew her as the Jen before the brain tumor.
“I am not that Jen,” she says as she shakes head back and forth. “I am not sure at what point I let that go. She is better. I am not saying it’s worse or it’s a sad thing – I’m not that Jen [anymore]. You’re functioning in a world where everything around you is the same and you’re completely different, you’re a stranger, you feel like a stranger everywhere you go and they recognize you.”
She is still coming to terms with this, but is making progress. She notes she spent a great deal of her recovery regretting her life and all the things she had wanted to do and didn’t get a chance to. So she made deals with the universe, promising if she could get up and function, she would do all the things she wanted to do.
“There needed to be a big change and I started just kind of saying, ‘Yes,’ to everything,” she says. “I took trips every weekend for a whole summer, [I] saw Niagara Falls for my first time.”
A few months after her surgery, Cousins lost her best friend of 20 years to a drug overdose.
“These were all defining moments that was calling me to do something I had always wanted to do. … One day it just kind of hit me, I need to go back to school. It seems like a ludicrous choice with a brain injury,” she says. “[I’m] my third semester in and this is my full-time one – I am rocking a 4.0.
“[I’m] so incredibly grateful to be there and so excited to learn and excited to start the next chapter of my life,” Cousins continues. “I feel like I have true direction for the first time in decades. I think I knew from the beginning that this was here for a reason, that it was meant to change my path and give it purpose and it has absolutely done that.”
Her major at the University of Maine Augusta (and she takes classes locally) is substance abuse counseling, but she wants to switch it to a straight psychology major.
And she wants to start a new blog. Prior to the brain tumor, she wrote about fighting events in New England, which became a passion of hers. But after her brain surgery, “I had a really hard time watching them get hit in the head, so I never went back.”
Cousins wants to write about this sort of thing, people who live hard knock lives, but get back up and overcome whatever obstacle it is that’s trying to keep them down.
“This is the kind of stuff that needs to be heard in this world we live in where there is so much negative energy being spewed everywhere,” she says. “There are people walking around that are absolute warriors. It’s a big thing to get out of bed and have a day sometimes.”
So what about the piece of her brain that she’s missing?
“Whatever else I lost when the surgeon took that golf ball-sized chunk from my head, it’ll come back,” Cousins writes.
To read Cousins’ blog about her brain tumor and recovery, visit https://glovesoffsportstalk.wordpress.com/.