Seeing cancer struggle as a mountain to climb
Phoenixville resident deals with brain tumor with optimism and the support of his community.
Facebook, the wildly popular social networking site, provides users the opportunity to express themselves via their own pages. Jesse Chew's page is quite detailed.
For his profile picture, Chew selected a photo of himself rock-climbing. Lanky, with spiky brown hair, Chew is grinning, holding onto a rope, with a wall of rock in the background.
Scrolling down the page reveals a list of his interests: climbing, pole vaulting (he's a former record-holder at Phoenixville High School), kayaking, dancing, cooking.
Then there are photos of Chew mountaineering in Wyoming, climbing a 450-foot sandstone plateau in Colorado, and whitewater-rafting in Maryland.
And there's a notes section, where people can put up essays, diaries, anything. Chew posted one on April 12 titled "Not so good news . . ."
In 685 words, Chew explained his recent diagnosis with glioblastoma multiforme, stage IV, a highly aggressive form of brain cancer. (Christopher Loftus, chair of neurosurgery at Temple University School of Medicine, said that Chew's tumor is probably very similar to what Sen. Edward M. Kennedy has been diagnosed with, based on the limited information released to the public about Kennedy's status.)
Then Chew explains why he's not upset. Why, in the face of a seemingly unbeatable disease - less than 5 percent of GBM-IV patients live more than five years after diagnosis - his spirits are up. He compares his imminent struggle - the chemotherapy, the radiation, the experimental drugs - to a rock climb.
His youth and good medical history made him an ideal candidate for two experimental drugs, Avastin and CPT-11, prescribed after a two-day consultation in late April at the Preston Robert Tisch Brain Tumor Center at Duke University.
On June 6, hundreds of people will gather at Phoenixville High School for the "Help us hold the rope" spaghetti dinner. Organized by two Phoenixville High juniors, the event will raise money to help defray Chew's rising medical costs. It is the centerpiece of a communitywide effort to help Jesse and the Chew family as he makes his climb.
"So many people know what a wonderful person he is . . . It's really sad. I can't imagine," said Sandi Henzie, 53, her eyes turning red and brimming with tears as she talked.
Seated at a table in a hallway at Phoenixville High, Henzie leafed through a manila envelope, stuffed to the brim with pages outlining the details for the spaghetti dinner, and for the at-home dinner schedule. She has arranged for community members to cook dinner for the Chews. Every night when Jesse and his mother, Melba, return from radiation treatment at the Hospital of the University of Pennsylvania, a different dish is waiting for them.
Across from her are the two juniors who have taken fund-raising for the Chews on as their senior project. Her daughter Maygan Henzie, 17, shook her head in disbelief when asked about Chew's handling of his diagnosis.
"I would be a wreck. . . . I think he has such a big heart that it allows him to look at the good in every situation," she said.
Rebecca McCulloch, 16, knows Chew only through the Henzies. But in the four weeks since planning for the dinner started, McCulloch has seen how Chew's spirit has galvanized community members.
"Not only is it a great way to raise money, but I think it's a great way to bring the community together," said McCulloch. Sandi nodded her head in agreement.
"It's one great thing to come out of a bad thing," Sandi said.
Last Sunday was Jesse's 23d birthday. He sat on a white sofa in the living room of his house in Phoenixville, where he lives with his mother, Melba, and 21-year-old brother, Casey. In jeans and a green sweater, Jesse was intermittently interrupted by the buzzing of his cell phone, as people wished him a happy birthday via text message.
He explained his nomadic college career, which took him from Kutztown to Colorado Mountain College, in Leadville, Colo. (a town of about 2,800 people stocked with "ex-miners, hippies, and ski bums," he said).
Melba, perched on the couch next to him, interrupted to remind him to take his antiseizure medication. The small, cylindrical orange bottle sat ominously on the coffee table, next to Jesse's half-finished bowl of cereal.
Then, with disarming aplomb, Jesse launched into the story of how he discovered he had cancer.
He talked about how in March he began having "episodes," 20-minute periods of nausea, dull headaches, a song by jam-band Phish playing in a loop in his head, and a metallic taste in the back of his mouth.
He soon realized they were triggered by loud noises, and while celebrating a friend's birthday at a bar in West Chester, another episode kicked in. His friends not so delicately told him he looked like crap, and needed to go to a hospital.
So Jesse, who doesn't drink, drove his four friends, who do, to Chester County Hospital. As he explained his episodes to a nurse, Jesse pointed to the right side of his head, and told her that the headache wasn't where it should be if it were sinus related, it felt like it was in his right temporal lobe. A recent EMT graduate, Jesse actually used that terminology.
The nurse sent him for a CAT scan, which revealed a two-centimeter tumor, exactly where he had pointed.
A helicopter ride to Temple Hospital and two days of testing later, the 2003 Phoenixville High alum underwent surgery to remove the tumor. Based on his age, the doctors were hopeful that the tumor was benign. It wasn't.
"To this day, I'm not upset about this. I feel like I've lived a great life. Twenty-three years of traveling and meeting great people, experiencing great things," explained Jesse.
Jesse says he has responded well to the chemo and radiation so far, but he knows the road ahead isn't easy. In his free time he has posted updates on his Facebook page, and his upbeat philosophy has drawn contact from people he barely knows, if at all. A minister from Quakertown called to tell him he read Jesse's notes to his congregation.
In another one of his notes, titled "Approaching the base of the climb," Jesse delved into his analogy of his ordeal to climbing a mountain. He compared an April 21 visit to Penn to have his radiation mask fitted to "unpacking my bag at the base of the mountain." He started the chemo and radiation on April 28.
"Thank you all so much again for your support, love, and best wishes," Jesse wrote in closing his note. "Those thoughts are keeping me strong and positive, and have meant everything to me. When I begin to climb, you will all be holding my rope."
If You Go
"Help us hold the rope":
The spaghetti dinner will be held from 5:30 to 8:30 p.m. June 6 at Phoenixville High School, 1200 S. Gay St. Pasta will be cooked by Carrabba's Italian Grill in Frazer, paid for by J & M Carpentry. Homemade desserts have been donated. Raffle and 50/50 tickets will also be on sale.
Tickets for the dinner cost $10 for adults and $5 for children 10 and younger, and must be purchased in advance. To buy tickets or for more information, call Sandi Henzie at 610-917-1322 or 610-933-4251.
At 7:30 p.m. Saturday, a Phoenixville High Choral Program benefit concert will send some proceeds to the Chew family. Tickets cost $10 and can be bought at the door of the high school.
Water ice for Jesse:
Rita's Water Ice will donate 10 percent of its sales from 6 to 10 p.m. June 10 to the Chew family. Rita's is at 411 Schuylkill Rd, Phoenixville.
To read Jesse Chew's notes, which also have pictures of him along his "climb," you must have a Facebook account. Once you are signed in, search for "Jesse Chew."