“I am too positive to be doubtful, too optimistic to be fearful, and too determined to be defeated.”
It was a feeling of complete peace. Ashley Lyles, in December 2015 at just 35 years old, had been diagnosed with stage IV Glioblastoma – an incurable and aggressive form of brain cancer – on her right frontal lobe. Yet she knew, despite the news that survival was unlikely beyond a year, it was in God’s hands.
She was determined not to let it win.
“God told me, ‘Something’s wrong, and it’s bad, but it’s all going to be OK,’” Lyles said. “So, I don’t know if I was just numb, but I just had this peace, and I have ever since.”
More than 18 months later, she remains tumor free.
Still, it’s not been an easy path, and there are days when the magnitude of the situation hits her. Lyles, a Marshall County native turned successful insurance litigation attorney living and working in Chicago for then 13 years, when it came quickly like a thief in the night and left her reeling. She noticed just after a late November trip to Disney World with her parents, sister, brother-in-law and nieces that something felt “off.”
Friends and co-workers began to notice subtle changes, as well. Lyles – highly organized from birth – seemed “loopy” and spoke loudly; she overslept, and showed up to a company Christmas party stumbling, though she’d not been drinking. “Weird” behavior is what they would later tell her.
Lyles, however, didn’t see it. It wasn’t until a few days later, when she got a migraine she just couldn’t shake, that she worried something might be wrong.
“I’m taking, basically all the over the counter medicine you can take without (an) OD,” she said. “It just wasn’t getting better. … Saturday was a blur. I remember – go figure – that Kentucky played Ohio State in New York, we got beat pretty bad, and I remember thinking, ‘This is just a dream.’ But I couldn’t tell the difference between like what was reality and what was a dream. … I had ordered some food on Saturday and couldn’t eat it. So that’s when I told myself, ‘OK, this isn’t better by tomorrow at 12:30, I’m going to the hospital.’ And I couldn’t sleep that night; I think I finally dozed off but the headache woke me up.”
The designated time came and went, so she packed a bag and took a cab to the hospital that Sunday, prepared to get what amounted to “a $10,000 Tylenol” she figured. Doctors asked the routine questions and gave her “the migraine cocktail.”
When the cocktail didn’t work, doctors performed an CT scan, and then an MRI. Shortly thereafter, they told Lyles she might want to call her family. Her parents arrived that night. Though they were concerned, Lyles’ mother Karen said it wasn’t until later – when doctors were certain they knew what they were dealing with – that she truly felt the weight of the situation.
“I still didn’t think of cancer,” Karen said. “I was just thinking it was a tumor but it was benign .. So when they took her down for surgery, he pretty much said it was cancer. Of course I had to be brave for her. It didn’t hit me until after the surgery, and he came in and said yes it was cancer. I was just kind of numb.
“He comes down, and he tells us that it is stage IV cancer,” Karen added. “… I still get kind of numb. I try not to think about it. I do think about it, but I try not to let it consume me.”
The odds of survival were slim. Doctors told Karen her daughter would likely only have 12-15 months. Some 97 percent of Glioblastoma tumors would return with lethal force in that time frame, they said, and it was an aggressive breed. Lyles’ tumor was about the size of a pea when doctors discovered it on a Sunday; when it was removed that Tuesday, just two days later, it had grown to the size of a golfball.
However, in Lyles’ mind, 97 percent just meant that somebody had to make up that 3 percent: why not her?
Lyles began daily chemo and radiation treatment five days a week, and though the associated side effects – hair loss, in particular – came, she embraced them as only she could: with style.
“I decided when I was first diagnosed – I had been letting my hair grow for years, so my hair was long, almost down to my waist, and I had it red. I called it my Ariel hair,” Lyles said. “When I was diagnosed, I cut it and donated it. And then as it started falling out we shaved it. But there was a part on my left side that wasn’t falling out because it wasn’t where the radiation was hitting. So we left it and had a UK shaved in it. … And then as it started growing back, I started growing the mohawks and we started doing it fun colors, you know just to make things positive. To be fun.”
It’s been an adjustment, however. Lyles was fortunate in that she retained the use of her body and limbs, and her speech was unaffected by the tumor or surgery. She tires easily, even now, and she suffers some short-term memory loss. Overall, though, Karen knows it could have been much worse.
Ashley Lyles pictured with her sister Amber (right) and friend helping with the Sparkle Bright Foundation (back) Danya Proud and friend (left) Christina Brown.
“She’s kind of been my rock,” Karen said. “You just never imagine, you know? … But I will say it’s brought her stronger to her faith, a lot stronger than she was. … She’s always been brought up, but you know she lives in Chicago and there’s really not the type of church (like here), but now she’ll listen to the sermon every Sunday and Wednesday. She reads her Bible more. So, I would say her faith and (understanding of) material stuff. Before she was an attorney, and she’d dress nice and she’d want these Louis Vuitton shoes and now she sees it’s not important.”
Karen said she’s proud of her daughter, her independence and the attitude she’s maintained. Defeat is not something in Lyles’ vocabulary.
“She’s has a positive outlook,” Karen said. “She has two nieces and she says, ‘Now, when you turn 16, Auntie’s going to take you to Paris.’ So, yeah, real positive outlook. She works out four days a week, and tries to eat better. … It’s really helped her.”
It’s not always easy to stay upbeat, though. Karen said while she had been fortunate enough to keep her mobility and speech, there were other effects of the surgery.
“Her memory. She’s very organized, and she’d say, ‘Now Mom, where’d I put my glasses? Now, Mom, what did I do with that?’ That’s been difficult for us because I knew it bothered her,” Karen said. “Not being able to socialize more with her friends. … Not being able to go back to work. She’s very independent. … I’ve heard her say sometimes, ‘I hate cancer; I can’t do what I used to do,’ and I think that’s because she gets tired easily, and it hurts me to see her that way.”
The days that get her down are few and far between, however, and Lyles said she’s made a conscious effort to look at the good of the situation.
“We all go through things that affect our lives in different ways, and there are times when I have to purposely think, ‘Be positive,’” Lyles said. “You know I’ll get down sometimes. When I feel like a year and a half of my life is gone, but then I’m like, think of it this way: I’ve been spending time with my grandmother, who is 89, who wouldn’t get to spend that time. I think of that Fleetwood Mac song where ‘We’re all getting older, too,’ and it’s true. I’ve got to spend time with my family here, that you know I don’t live here, so I only get a couple times a year. I see my nieces go to school. My parents are getting older. We’re getting older. So I try to think of it that way.”
She’s working to bring some of that positivity to others in a similar position with the Sparkle Bright Foundation, a nonprofit organization she founded to help alleviate the little burdens of those suffering with brain cancers. The foundation is aptly named, Karen said.
“She loves anything that sparkles,” Karen said. “She has always just, glitter and sparkle … anything that just reaches out and grabs you, she likes.”
Much like her, it seems. Lyles has a passion for travel and a zest for life. A die hard UK basketball fan, her bubbly personality and personal outlook has drawn a number of people into her life, including John Calipari and a number of famous athletes, including one that helped ignite the idea behind the foundation at its inception.
“Nazr Mohammed, he played at Kentucky and was in the league I believe for 18 seasons,” Lyles said. “… He’s from Chicago, so he and his wife lived in Chicago and we happened to cross paths and they’ve become good friends of mine. He has a foundation that I volunteer with and do stuff with. He did an event last year where – there were four of us that were close to him who were diagnosed with cancer – so he did a casino night, and all the funds raised he divided between us and we could donate to the charity of our choice. So we got to thinking – Kim (Parks) and I – ‘Why can’t I do this?’ I’m fortunate in being so involved with (the University of) Kentucky with the alumni side and the athletic side that I know a lot of people, and even through Nazr know some NBA players and some Bears players. And it’s like, I have the connections now: I know too many people now for this not to work.”
The organization seeks to provide a range of services, be it offering a hub of practical information on how to apply for social security benefits to sending patients on a trip. Lyles said she herself had numerous questions after the diagnosis, and thought providing that information or a means to find it in one place could serve those who need it well.
“Just questions I had come up, about coming back to work and, you know, financial opportunities,” Lyles said. “You know there’s a lot of questions of, ‘If I go back to work part time, is my disability going to go away?’ I can live off my disability, but I can’t just live off a couple dollars an hour. Your insurance, now I pay my insurance 100 percent. … So I got to thinking as I’m researching for myself and talking to people, ‘Well, I’m not the only one who has these questions.’ So, Kim got the paperwork together and filed the papers, and we were finally approved as a 501(c)3 in February.”
Donations are tax-deductible, and monies raised go to provide a “sparkle” – a gift, moment, act of kindness or other assistance to offer a little bit of extra hope – to a brain tumor patient in the continental U.S. and toward brain cancer research initiatives. Sparkles, she said, were designed for specific individuals with their needs in mind. Thus far, the group has served two patients, and looking to provide for more.
“It can be what just will kind of help you have a positive outlook, something to look forward to,” Lyles said. “One of the things they’ll stress or you hear about is your diet. Well, as we all know, eating healthy: it’s not cheap. So, maybe it’s gift cards to Whole Foods. You know, this cancer is common in a lot of elderly people. Maybe you can’t get to the grocery store. So we can go grocery shopping for you, or something like that. … And this is something, just a want, but I’m a nails girl. I like to have my nails done every other week. Well now I can’t justify that. I paint them myself now. I can’t justify that, I’m making a disability paycheck, so maybe that’s something (we can have done for you). … Anything we can do, from sending you to the beach to meeting an athlete, we’ll try to make anything work.”
Lyles said anyone can nominate someone – or themselves – to receive a sparkle from the foundation via the website at sparklebright.org. Recipients need only be 18 or older, residents of the continental U.S. and must suffer a brain tumor – though the tumor does not necessarily have to be cancerous – that a doctor will verify.
“I don’t want to know your medical information,” she said. “… Just (verification) from a doctor that says ‘yes, I’m treating them for this.’”
According to the National Brain Tumor Society, about 700,000 people in the U.S. Are living with a brain tumor; of those, a little more than 138,000 are malignant. About 79,270 residents will be diagnosed with a primary (a cancer that begins at the site) brain tumor this year; of those, about 26,000 will be malignant. The average survival rate of malignant brain tumors is about 34.7 percent. Glioblastoma multiforme is the most aggressive form of brain tumor, with a survival rate of about 5.5 percent within five years of diagnosis.
Some 140 types of brain cancer have been identified and most have a multitude of subtypes, according to NBTS; however, only four FDA approved drugs and one device have been released for the treatment of those cancers in the last 30 years.
And brain cancer is a very costly diagnosis. Lyles knows it well. Even as an attorney, medical bills were burdensome, and friends set up a Go Fund Me account, raising $12,000 toward her expenses. Lyles said she continues to pay on her treatments through a payment plan, but the additional funding had been a tremendous help.
It’s just part of the reason she said she feels so strongly about her foundation. In a time where she’s still unable to return to work 100 percent, Lyles said helping others through the same difficult situation she faces has become a passion.
“I don’t want to make anybody feel guilty for not feeling positive,” she said. “You’re not expected to, that’s why we’re doing this: to help you smile for a day. I hate to use the word normal, but to feel like you did before the diagnosis for a day or a week or whatever. It is difficult, and that’s why I think it’s important that we have something like this.”
And she’s not about to let fear of the unknown or the possiblity of a reoccurrence dictate the course of her life.
“I look at it as, yeah well, it could come back, “ Lyles said. “I could get hit by a school bus. I could get struck by lightning. All sorts of stuff could happen, so I try not to look at that. And when I do think about it, it just gives me more motivation to: A, make this Sparkle Bright successful and B, see as much of the world as I can see.”
To learn more about the Sparkle Bright Foundation, visit sparklebright.org or find it on Facebook. Lyles also has a local bank account at U.S. Bank, where donations to the foundation can be made. Checks should be notated Sparkle Bright on the memo line, so that money will go into the foundation. Donors will receive receipts for their contributions, as well.