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Pat Malone, who stands for cancer fundraisers, soon won’t be able to

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Pat Malone was nearing his goal Sunday of standing for 24 hours straight, a quirky fundraiser for cancer treatment he has staged for a decade on the anniversary of lifesaving surgery that removed a hockey puck-sized tumor from his chest.

As the minutes dwindled, people playfully urged on the 66-year-old at an Arlington pizzeria. But a series of extraordinary medical twists left a somber question hanging over the uplifting atmosphere: Would this fundraiser be his last?

After surviving one of the rarest forms of cancer — a malignant peripheral nerve sheath tumor, diagnosed in 2013 — the Alexandria resident was struck with an incredibly rare genetic disorder that causes leg spasms and stiffness. Hereditary spastic paraplegia (HSP) affects fewer than 20,000 people in the United States, by one estimate. Malone said he knew of only one other person in the D.C. area with the condition.

The progressive disease could eventually mean Malone will have to use a wheelchair, but more immediately he was concerned that its painful effects would render him unable to stand for the long periods he needs to raise money. He told friends before this year’s event that he might not be able to do it again.

After raising about $100,000 over the years, this might be his last stand.

Malone could only chuckle at the astronomical odds: What are the chances that a rare disorder would prevent him from doing the very thing he needed to do to raise money for another condition that affects a minuscule 0.001 percent of the population?

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“I sat down at the casino and got dealt some bad hands,” Malone joked.

His work began a decade ago. The Air Force veteran, who has a job in marketing, started experiencing severe chest pain in 2013 after lifting a dresser, which caused bleeding in a tumor that he didn’t know was growing beneath one of his pectoral muscles. A doctor soon gave him the bad news.

“They said, ‘Mr. Malone, we may have to cut your right arm off,’” Malone said.

Ultimately, that did not turn out to be necessary, but Malone recalls a medical team “opened him up like a car hood” during a seven-hour surgery in 2014. He awoke with 150 staples in his chest and a sense that he had been granted another chance. He glanced up at a clock in the recovery room. It read 4:26 p.m.

“It was like a second birthday,” Malone said.

Malone wanted to give back, so he researched charities and decided to donate to a group called Stand Up to Cancer. Malone said he conceived of the standing fundraiser on a lark while on the phone with a member of the group. He would begin standing at 4:26 p.m. the day before the anniversary of his surgery and continue until 4:26 p.m. on Feb. 11 each year.

Malone does not sleep during that period, and he said he has figured out a system of pacing around and massaging his legs that allows him to stay on his feet for so long. Still, the HSP gives him a shuffling gate and his knees knock together. Weary, he occasionally clutched chairs and walls for support on Sunday.

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Malone said he feeds off the energy of people — some of them total strangers — who donate money and stop by Fire Works Pizza each year to cheer him on. A friend donated $2,000 on Saturday, and a woman who had survived breast cancer contributed $1,000.

A group of guys he had worked with as a teenager at a Virginia driving range 48 years ago stopped by the pizzeria to urge him on. Katie Couric, who works with Stand Up for Cancer, sent him encouraging texts. He tells everyone to get a cancer screening.

The fundraiser is not without its challenges.

Malone said that at about 10:30 p.m. on Saturday, he suffered a spasm at the site where his tumor was removed from his chest. It was severe enough that family members thought he was having a heart attack. The HSP can make him unsteady on his feet, and he has “dropped like a brick” a couple of times in previous months.

As the last seconds ticked down Sunday, staff and supporters at Fire Works Pizza counted them out, “10, 9, 8 7 …”

When it reached 4:26 p.m., Malone raised his arms in victory and plopped into the seat of an orange dining room chair. He started a speech but was quickly overcome with emotion and buried his face in his hands.

A Fire Works staffer put his hand on Malone’s shoulder: “You made it Pat, 10 years.”

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Malone told the crowd he stood each year to raise money for cancer, but also to raise awareness about the importance of regular checkups. He thanked attendees. Finally, he told them he had decided he would not be retiring from the fundraiser, at least not yet.

To cheers, Malone shouted, “Let’s do it next year!”

Source: Washington Post

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