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

BY KEN RAYMOND Modified: December 24, 2009 at 11:18 am •  Published: January 11, 2009
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. 20, 2004.

At long last, hope
Jim, like everyone else, wants to look good and feel attractive. Even today, years into his cancer battle, his most frequent lament is the state of his hair. Before chemo, he had dark, thick, young-looking hair. Post-chemo, it is thinner, grayish and refuses to lie flat.

Losing his arm was a bigger blow to his ego. Everything else — learning to use his left hand to write, drive, type, feed himself and more — was made worse by losing his anonymity. Before, he was Jim Chastain, a normal-looking man who could hide in a crowd. After the amputation, he said, he became "that one-armed guy,” a target for curious eyes and an object of wonder to children.

"It was nice to have an arm, even if it didn’t work right,” he said. "I didn’t want to look handicapped.”

The disfigurement would be worth it, though, if it meant he would live. Every three months, Jim returned to M.D. Anderson. Frequent MRIs detected no new tumors, and gradually, the time between hospital visits grew to six months. About three years after the amputation, Jim switched his maintenance visits from the Houston hospital to OU Medical Center, just down the street from his office.

Three years without cancer. So far, so good.

Hopefully, it would never come back. If it did, well, his doctors had kept him alive this long. He had faith in them. He believed he was alive because of his surgeons’ skill in fighting his particular form of cancer. No miracle cures. Just advanced medical techniques and steady hands. The scars twining across his shoulder, back and leg were proof.

Six years had passed since he’d found the lump. Maddye and Ford were growing up. His daughter was old enough to drive, and his son had been playing guitar and singing with a band for five years.

Jim didn’t have to worry about them forgetting him anymore.

He had, it seemed, defeated cancer. Time to start cleaning up the mess it had left behind. Even with insurance, the endless stream of doctor visits, MRIs, radiation, surgeries and more had hurled the family into debt. With Jim feeling better, they took a gamble — selling their home and using the equity to pay off the bills.

Getting into a new home put them back in debt, but one bill is better than dozens, and who doesn’t have a mortgage?

Jim’s future looked brighter than it had in years.

‘It’s the dark moment’
In the summer of 2007, Ford’s band was invited to Hollywood to audition for a reality show — an "American Idol” meets "Making the Band” kind of deal. Jim went with them.

During some off time, the band members and their families went to an amusement park with a steep hill. As the others climbed it, Jim fell behind, sweating and gasping for air.

"I don’t think I can get up this hill,” Jim thought, embarrassed. "What is wrong with me?”

His couldn’t catch his breath in Oklahoma, either. He tried to jog with LeAnn but made it less than a block. Something wasn’t right.

"I had a CT scan,” Jim said, "and they dropped the bomb on me then. ‘You have lung cancer and liver cancer, and essentially this is terminal.’ They didn’t give me a time, but it looked like it was going to be quick.”

Jim returned to the hospital. Surgeons did a liver biopsy and implanted a port in his chest to make it easier to connect intravenous needles.

The biopsy let in a tiny ray of light. Jim’s cancer hadn’t originated in his liver. It was colon cancer that had metastasized and moved into his liver. That meant more treatment options and a longer life expectancy, something like 13 to 22 months.

Over the next several months, chemo shrunk the tumors about 25 percent but couldn’t destroy them. The liver is a regenerative organ; it will repair itself. Ordinarily, surgeons cut cancerous tissue out of the liver, but Jim’s tumor was growing on the liver’s blood supply. Removing it would kill him.

His doctors had an idea. Although chemo pumps aren’t used much anymore, they decided to implant one in Jim to target specific parts of his liver. If they could clear the blood supply, they might have a chance, albeit slim.

Jim returned to M.D. Anderson in August. His gall bladder was removed. The pump was installed. And this time, Jim was left to "recover” with only the faintest whisper of hope that recovery was a real option.

Medical science had carried him this far, but it had reached its limits. For seven years, he’d subjected himself to torture, allowing his body to be ripped apart on the altar of technology. First pieces of flesh. Then a muscle and an entire arm. All of that just to end up like this — dying. He hadn’t asked for a miracle before. Now he needed one, and it was nowhere in sight.

He was alone. His family had returned to Norman. Stuck in the hospital, he couldn’t sleep. Three days had passed since the surgery, and he couldn’t take it anymore. He had to leave.

The doctors wouldn’t discharge him until they checked his pump again to make sure it was working. Jim was loaded onto a stretcher and wheeled down the hallway. "Go slow,” he warned the orderly. "I barf.” But the stretcher kept rolling, bumping and jerking, making Jim’s stomach churn.

They bounced into a crowded elevator. The air was hot and stale.

By the time they made it back to his hospital room, Jim felt ill.

"A nurse comes in,” Jim said. "I’m getting ready to be dismissed, but I’m also feeling really nauseous.”

He asked her for a pill to settle his stomach. She reported it to a doctor. The doctor wanted him to spend the night. Jim called LeAnn; she told him to stay, too.

But Jim was desperate to leave. He’d set a goal. One thing for himself. One little thing.

The doctor gave him an ultimatum: Leave and you get nothing. Stay and we’ll treat your nausea.

"I said, ‘OK, I’ll stay.’ And then I just started crying,” Jim said. "Tears start running down my face. And two nurses are in there. It just breaks their hearts. I don’t know how many times they see that, but they just come over, and they’re sweet as can be. … One’s patting me on the head. They’re telling me it’s OK, and that just makes it worse.

"You have these very sweet people, and you’re hurting, and they’re telling you, ‘It’s OK. Just pray. Pray to God, and everything will be OK. It’ll all be OK. Just have faith.’ It was hurting me, because I feel extremely alone, just very much alone, and they leave, and I’m alone, and I say, ‘God hates me.’

"I say this out loud. It’s the dark moment. It’s the climax of the whole thing, just looking at it all. I’m pathetic. I’ve got one arm. I’m wearing a hospital gown. I haven’t worn underwear for days. I stink. I have to throw up. I’m alone. I thought, ‘This is too much. It’s too much.’

"They say God will only give you as much as you can handle, but that was too much. It was a fleeting moment. It’s not my philosophy of the world. But that’s how I felt right then. And after I had that moment, which lasted about 15 minutes, I took a breath and set a new goal: I’m going to get out of here as soon as I can.”

He left the next day.

An uncertain future
Jim isn’t giving up.

It’s been about 15 months since he found out about the colon, liver and lung cancer. A few months back, doctors told him he had months left to live. No more years.

That dark day in August, Jim rallied from despair to find a goal to keep him going. He’s done that all along.

Jim says every day he doesn’t make a memory is a lost day. He’s been building memories with his family, shaping his legacy, making sure no one forgets. He’s not just a lawyer or a family man. He’s also a writer and a poet, and his written words are another way for him to leave something of himself behind.

He has good days, usually when he’s been off chemo for a while, and bad days. Cancer has robbed him of many things, but he has one thing most of us lack — an acute sense of how precious time is.

He worries. How will his children handle his death? Where will his family live when he’s gone? LeAnn can’t afford that mortgage on her teacher’s salary, and he’s been uninsurable since 37. Will they make it without him?

He and his family grieve a little every day. But they also smile and laugh.

Dying isn’t keeping Jim from living.

"I don’t really get angry,” he said recently. "Lots of people suffer. Lots of people die. We all have our thing that’s going to happen to us. This happens to be mine.” has disabled the comments for this article.