Life is Real, Chapter One: Dying from cancer isn’t keeping Norman man from living

The incisions sliced down and across his belly, perpendicular lines of pain the prescription analgesics could only begin to touch.

He could feel the device inside him, a titanium pump occupying the space where his gall bladder had been for the past 44 years. Beneath the bandages, the pump bulged out of his abdomen like some gestating creature from the latest "Alien” sequel. But the real monster was growing beneath it.

The pain was god-awful. Not the worst he’d felt since this ordeal began, but close. Definitely top three.

It was August 2008. As the rest of the world watched Michael Phelps turn water to gold at the Beijing Olympics, Jim Chastain lay in a hospital bed recovering from surgery. Few places, he was learning, are as lonely as a hospital, especially when your wife and two children are back home in Norman, hundreds of miles away, and the nurses won’t let you sleep.

If he felt better, he might’ve chalked the number of days he’d spent at M.D. Anderson on the wall, just like a prisoner in some old book. That would’ve involved moving, though, so he just kept the tally in his head. One, two … three. Definitely day three.

A hotel room was waiting. He’d watch TV. He’d try to forget. He’d sleep. Glorious sleep.

He had to leave. He had to. Nothing else mattered.

By now, Jim had endured more than his share of disappointment and pain. Surgeons at M.D. Anderson in Houston had been cutting bits of him away for seven years — ever since he found the lump on his arm on May 31, 2001.

That day hadn’t seemed remarkable at first. Jim, then 37, was driving his family and two friends to a Norman snow cone shop when he felt an itch near his right elbow.

"I scratched it, and I just kind of moved my hand up, just kind of randomly, not because I felt anything,” he said. His fingers found the bump. "I thought it was on my skin. But then I was like, ‘Wait a minute. This is under my skin, on the muscle.’”

Jim pulled his wife, LeAnn, aside as the others ate their snow cones and asked her to look at it. She wasn’t impressed, but the lump disturbed him. It was tiny, smaller than a pea, and his hand returned to it again and again, tracing its outline.

He showed it to others, including his doctor. They told him not to worry. It was a pimple or a cyst. Maybe an ingrown hair.

He had an MRI, anyway. It revealed an ominous mass.

"It looked like an alien. … It had long fingers on it, all over it, even though it was less than a centimeter long,” Jim said.

Physicians at Norman Regional Medical Center extracted the lump and sent it away for testing. They didn’t know what it was, they told Jim, but it didn’t look good.

Little lump, big problem

Six weeks can be an eternity. Ask a kid looking forward to Christmas or a soldier waiting to come home from war.

Better yet, ask someone who’s wondering if he’s going to live or die. Time is an enemy when you’re lying awake at night playing out different endgames in your head. You wish the clock would move faster, speeding you closer to answers, while at the same time wanting to savor every second because you don’t know how many you have left.

The wait dragged on six weeks as the lump made its way from expert to expert. The mass wasn’t easy to identify. Physicians at the Armed Forces Institute of Pathology in Bethesda, Md., finally reached a verdict.

Jim got the call at his cubbyhole office at the Capitol, where he works as a lawyer for an appellate court judge, ghost-writing legal opinions. He answered on the first ring, his heart pounding as he heard his doctor’s voice.

"It’s cancer.”

A sarcoma. Malignant fibrous hystiocytoma. Rare. Stage three of four. Not good.

The doctor said, "I’m sorry,” then hung up.

"I was all alone when the news hit,” Jim wrote in a cancer memoir a couple of years later. "Unbelievably alone. It was as if the real world had been swallowed, and I was stuck inside a horrible dream with no means of escape.

"Sitting there at my desk in my little office, I felt a strange sensation of terror and relief. I was thankful the waiting game was finally over, but I was haunted by the fact that this was not a game at all. It was a fight for survival.”

Out of fear grows courage

Jim’s son, Ford, was 7 years old. His daughter, Maddye, was 10. LeAnn still turned heads as she walked through the mall.

What if he didn’t make it? Would they forget about him? Would LeAnn remarry? Would her new husband adopt Ford and Maddye? Would they call him Dad?

And what about his own parents? They’d already lost a daughter to a car wreck; could they survive losing him, too? How would he pay the medical bills? Would his family lose everything?

How could this be happening?

He’d taken care of himself. No steady diet of candy bars and Big Macs for him. He was active, and he didn’t smoke. Sure, he had an occasional glass of wine and a coffee or two, but overall, he’d been living well. Better than most. Malignant cancer? Him? Couldn’t be.

Yet there it was. For God knows how long, it’d been growing inside his triceps muscle. Inside of him. He could still see the MRI picture of the tumor, those tendrils spreading from it like an outstretched hand, grasping for more healthy cells to pervert. If it’d captured too many, he might be too late to stop it.

He could die.

Terror took root. He began viewing his days through a darker filter. One day, life was about family, friends and snow cones; the next, mortality was peeking at him from every shadow.

Soon after the diagnosis, Jim’s orthopedic surgeon in Oklahoma reviewed the literature on sarcomas and decided the safest bet would be to remove the triceps muscle. Lop it right off.

Not yet, Jim thought. Hopefully, not ever.

Jim wasn’t ready for crippling surgery. He sure as hell wasn’t ready to die. LeAnn hadn’t been alone since they’d met in college; no way he’d leave her now. His kids? They needed their father, and he’d be there to watch them grow. They wouldn’t have a chance to forget him. He’d fight this thing. He’d find the best doctors and treatments in the world. He wouldn’t stop.

People beat cancer all the time. No reason he couldn’t do the same.

He’d live. Or at least he’d die fighting.

Cancer defies the odds

Jim decided to keep his muscle and lose the surgeon — opting to go out of state to the University of Texas M.D. Anderson Cancer Center.

Wasn’t a difficult choice. The Houston hospital boasts that its specialists "see more sarcoma patients in one day than most other physicians see in a lifetime,” and because Jim’s cancer was uncommon, his insurance company agreed to consider his Texas treatments as in-network, absorbing most of the costs. Good news.

Trouble was, Jim’s doctors underestimated the virility of his cancer from the start:

• A radiologist was the first person to examine the MRI in 2001. He told Jim there was a "99.9 percent chance” the lump was harmless.

• At M.D. Anderson, surgeons removed more of the flesh around the tumor site, wanting to increase the margins and ensure no cancer remained. Jim underwent radiation therapy in Oklahoma City and was told there was a 90 percent chance the tumor would not return.

• The cancer came back in 2002. This time, surgeons removed the tumor and subjected Jim to brachytherapy, a targeted radiation treatment. Tubes were implanted into Jim’s arm, and after a few days, radioactive wires were fed into the tubes. "There were two of them sitting on a nerve,” Jim said, "and it was like excruciating pain when they stuck those in there. It was yelling sort of pain, one of the worst pains I’ve ever had in my life. … After that, they said I had a 75 percent chance that it (cancer) would never come back.”

• It did. In 2003, three tumors were found in his triceps muscle, one of them "huge.” The muscle had to go. Reconstruction required a muscle from his back and a skin graft from his right leg, leaving him with wounds on three areas of his body. "It sucked bad,” said Jim, who spent his 40th birthday recovering at M.D. Anderson. "There was a lot of pain on that surgery.” He lost about 25 percent use of his right arm.

• The battle for his arm ended in 2004. Cancer appeared again. A doctor told him, "You’re pretty much looking at an arm versus a life.” Jim’s arm was amputated at the shoulder on Sept.

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