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Mind over matter: Positive attitude helps Bloomington woman cope with recurring brain tumor

Aug. 29, 2013

Rachel DiGregorio is not bitter that it took doctors nearly four months to figure out she had a softball-sized tumor in her brain.

Rachel DiGregorio

Rachel DiGregorio, right, and her longtime friend Janel Fifer look at pictures Fifer took of DiGregorio's first treatment at the IU Health Proton Therapy Center. | Photo By Chris Howell, The Herald-Times

That’s because malice is missing from her DNA. She believes grudges are heavy to lug around. She’d rather focus on beating the tumor that recently invaded her brain for the second time in 22 months.

"I know there will be days when I’ll feel sorry for myself and get down,” said the 32-year-old Bloomington woman. “But I feel it’s a waste of perfectly good energy to obsess over the unknown.”

DiGregorio has an infectious laugh and a smile that radiates an “I can beat this” optimism. Her friends say she’s unflaggingly upbeat, and is handling her most recent health crisis with the serenity of a saint.

“She is a hero,” said Aaron Brewington, her boyfriend of 2 1/2 years. “She’s remained positive through this whole thing, and actually comforts other people even though she’s the one with the tumor.”

Dotty Sharp, one of her closest friends, said she’s been amazed by DiGregorio’s calm in the midst of her ordeal. “She’s been so cool and collected through this whole thing,” she said. “I’ve never heard her say, ‘Why is this happening to me?’ Her attitude is more like, ‘OK, this is what I have to do, so let’s do it.’”

Sharp said DiGregorio has always had a wacky sense of humor -- recently taking a four-week comedy class and often dressing in a bulbous bumblebee costume at Halloween.

Apparently, her brain tumors have not sheared the edge off her wit. On the rear of her 2001 Subaru Forester is a bumper sticker: “I had brain surgery. What’s your excuse?”

“I always try to keep my sense of humor,” she said. “If you can find something funny about the little road bumps of life, they’re easier to deal with.”

But DiGregorio is also a straight shooter who speaks with unvarnished candor. That’s why she urges anyone with perplexing medical symptoms to seek answers with pitbull tenacity.

“If you feel there’s something wrong with you and you aren’t getting any answers, or feel your doctor is not taking you seriously, find another doctor or do some research on your own,” she said. “It could be a matter of life and death.”

Elusive diagnosis

DiGregorio’s first symptoms, severe headaches, surfaced in May of 2011. She attributed them to eyestrain from working at a computer all day as a world music publicist at Bloomington’s Rock, Paper, Scissors Inc.

But when she became so exhausted she could barely drag herself out of bed in the morning, she went to her family doctor -- who diagnosed her with depression.

“I thought to myself, ‘Why would I be depressed?’” she said. “I have a great boyfriend and great friends and loving pets, and I really like my job.”

When she began seeing halos, she underwent an eye exam. The optometrist said her vision was perfect.

“At that point I thought maybe I was just stressed, so I got acupuncture and massage,” she said. “But neither helped.”

A few weeks later at work, she was walking down the hall with a colleague when she collapsed. She was fully conscious, but terrified.

treatment Rachel DiGregorio

Rachel DiGregorio waits for her treatment as technicians finish preparing the treatment area. She is strapped and held in place with a custom-made face mask and body shield. She must remain completely still during the treatment process. | Photo By Chris Howell, The Herald-Times

“I had no idea what was going on,” she said. “My co-worker said, ‘I have seen only one seizure in my life, but I think you just had one.’”

DiGregorio called Brewington and described her fall. He told her to go to the emergency room at IU Health Bloomington Hospital.

“I told the ER doctors that I didn’t experience any dizziness before I fell, and that in recent weeks the hearing in one of my ears would sometimes get dull and muffled,” she said. “They said they didn’t think I’d had a seizure, and perhaps it was vertigo caused by water in my ears. They gave me a prescription for Claritin to dry out my ears.”

DiGregorio left with a prescription in her hand, and a burr under her saddle.

“I wasn’t pleased,” she said. “I knew something more serious was going on.”

Over the next few days, she lost so much strength in her hands that she could no longer button her pants or put her hair in a ponytail, and she found it difficult to sit upright in a chair. One day at work she vomited at her desk. “It happened with no warning at all,” she said. “That really freaked me out.”

She drove to the IU Health Urgent Care Center on West Third Street, where nurse practitioner Carol Beall told her she needed an MRI right away. DiGregorio contacted a neurologist, but learned that even with her health insurance, her out-of-pocket expenses would be $2,500.

“There was no way I could afford that,” she said. “But a friend found a place in Indianapolis -- MRI Solutions -- that did discounted MRIs.”

‘My mind went blank’

At 9:30 a.m., Sept. 9, 2011, DiGregorio underwent an MRI. It cost her only $600. She returned home and at 1 p.m. got a call from her Bloomington neurologist, Vanessa Beard, who said she’d just received the MRI results and wanted to see her as soon as possible. At 3:30 p.m. DiGregorio was sitting in Beard’s office with Brewington and her mother, Claire Koenig.

Beard told her she had a meningioma brain tumor the size of a small grapefruit.

“I just went numb,” DiGregorio said. “My mind went blank.”

Moments later, DiGregorio asked Beard if she could see the MRI, but the doctor was hesitant.

“I understood her concern, because she was afraid I might flip out,” DiGregorio said. “But I wanted to see with my own eyes what was causing my pain and disrupting my life.”

So Beard led her into a dark room and showed her the image of her massive, 7-gram tumor. It occupied nearly a third of the space inside her skull -- squeezing her brain into a misshapen mass.

“It was a relief to finally know why I was feeling so terrible,” she said. “It also felt good to know I wasn’t crazy and was justified in continuing to seek answers.”

Meningioma tumors are usually benign, and often produce no symptoms or require any treatment. But in DiGregorio’s case, the tumor had grown so large it was threatening her life.

“Dr. Beard said she didn’t know if the tumor was benign or malignant,” she said. “But she said it was putting immense pressure on my brain, and had to be removed as soon as possible.”

‘I was smiling’

Five days later, DiGregorio underwent a five-hour brain surgery at IU Health Methodist Hospital. Her neurosurgeon was Aaron Cohen-Gadol, M.D., onsidered one of the best in the country. Dr. Cohen-Gadol is also an associate professor of neurological surgery at the IU School of Medicine.

radiation treatment Rachel DiGregorio

Rachel DiGregorio talks with radiation therapist Amanda Scarsdale, left, as technicians lower the treatment table after her first treatment at the IU Health Proton Therapy Center in Bloomington. | Photo By Chris Howell, The Herald-Times

“When I woke up after surgery, I was smiling,” she said. “I felt so much better. The pressure was gone.”

During the next few days she kept hearing a noise that resembled fingers tapping on a tabletop.

“I asked a nurse about it and she said that’s normal,” she said. “She said it’s the sound of air escaping as my brain expanded into the space where the tumor used to be.”

Cohen-Gadol told DiGregorio he’d been able to remove 100 percent of the tumor, which he estimated had been growing inside her skull for about six years.

“I asked him what the chances were of the meningioma returning, and he said no one knows because this type of tumor is highly unpredictable,” she said.

A setback

Four days after DiGregorio’s surgery, she was back in her two-bedroom duplex on the south side of town.

“It felt amazing,” she said. “I was so happy to be back in my own home, in my own bed. Then Dr. Cohen-Gadol called and said the tumor was benign. That made me feel even better.”

In November 2011, two months after her surgery, she was back at work, feeling hopeful her medical troubles were behind her. But last month, during a regular checkup at Methodist Hospital, an MRI showed the meningioma had returned. It was an elongated and irregularly shaped mass in the right and center part of her brain.

Her medical team told her it was inoperable because the tumor was nestled against the portion of the brain that controls motor skills.

“It’s a Grade 2 tumor, meaning it’s growing at medium speed,” she said. “It’s not known if it’s benign or malignant, but it doesn’t matter because it’s inoperable. I believe it’s benign.”

Mark McDonald, the radiation oncologist who is overseeing DiGregorio’s treatment at the IU Health Proton Therapy Center, told her she had three options -- do nothing, undergo traditional radiation, or receive proton therapy. She chose the third option.

Before beginning treatments, DiGregorio asked McDonald what would happen to her flowing, blondish brown hair that extended to the middle of her back.

“He told me I would probably lose all the hair on the right side of my head,” she said. “So I decided to have it cut short before I began my treatments.”

On July 19, beauticians at the Royale Hair Parlor lopped off more than a foot of DiGregorio’s hair, which she sent to Locks of Love, a nonprofit organization that provides wigs made from donated human hair to children who’ve lost their hair due to cancer treatments or medical conditions.

On July 30, she had her first of 35 treatments at the center. She will continue those treatments five days a week for seven weeks.

McDonald said the goal of DiGregorio’s treatment regimen is to stop the growth of the tumor and inactivate it, destroying its ability to spread.

“The small amount of tumor which is visible on her MRI will likely contract down modestly over a few years, but some visible area will remain in the future, similar to scar tissue,” he said. “Proton therapy is highly effective in stopping the growth of meningiomas.”

DiGregorio can live with that -- both literally and figuratively.

“Sure, I’d love for the treatments to just wipe everything out like a Star Wars movie,” she said. “But if they can cause the tumor to stop growing, I’ll gladly take that. I’m very optimistic that this is going to work.”

Pet therapy

DiGregorio said she’s lucky to have such a strong support system, especially on her bad days. People like her mother, her boyfriend, and dozens of family members and friends.

But she also leans heavily on her four-footed pals -- Lucille, an 8-year-old Boston terrier; Abby, an 11-year-old pit/lab mix; Dr. Scarlett Sprinkles, a 4-year-old tabby; and Blythe, a 17-year-old long-haired cat.

“When I came home after my brain surgery, I slept for 24 straight hours,” she said. “A friend told me Abby was at lying my feet the entire time, just staring at me.”

DiGregorio said her pets are fun, fascinating and fiercely loyal.

“They are immensely entertaining, and they live in the present -- which to me is the most amazing thing,” she said.

DiGregorio is sitting on her living room couch, gently scratching Lucille’s back. The pint-sized pooch tilts her head back and gazes upward, as if sunning herself in the smiling visage of her master.

Suddenly, without warning, DiGregorio’s amber eyes glisten.

“You can be in the worst mood in the world and they greet you with such enthusiasm, for no other reason than they love you and want to be with you,” she says. “So you think to yourself, ‘Maybe things aren’t as bad as I thought they were.’”

Musical DNA

Rachel DiGregorio grew up in Nashville, Tenn., the daughter of the late Joel ‘Taz’ DiGregorio, a longtime member and keyboardist in the Charlie Daniels Band. Her father died a month after she underwent brain surgery.

Her grandfather, 82-year-old Fred Foster, used his life savings to start Monument Records, which produced many of Roy Orbison’s songs, such as “Crying” and “Only the Lonely.” Foster also played a significant role in Dolly Parton’s career, signing her to Monument in 1964, shortly after her arrival in Nashville and overseeing her recordings. Foster produced such musical artists as Ray Stevens, Kris Kristofferson, Larry Gatlin, and Al Hirt; and in 2009 was inducted into the Musicians Hall of Fame and Museum.

“Monument Records was an amazing label that was home to a lot of musical artists that didn’t fit into any particular genre,” DiGregorio said.

“Back in those days you had to fit into a particular slot -- like rock-and-roll or country or pop or blues. My grandfather helped them find an independent voice that often led to mainstream success.”

This story is shared with permission from The Herald-Times.

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