Former AIDS activist stricken with cancer: ‘I’m just waiting to die’

Tom Rapp hugs his dog, Little Bit, at his home in Middletown. Rapp, formerly of Springfield, is an active volunteer in the area and is battling cancer while caring for his mother and partner.

Staff photo by Nick Graham Tom Rapp hugs his dog, Little Bit, at his home in Middletown. Rapp, formerly of Springfield, is an active volunteer in the area and is battling cancer while caring for his mother and partner.

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Tom Rapp, an AIDS advocate who is an active volunteer in the community, sits at the dining room table of his home Monday, Oct. 5, 2009 in Middletown, Ohio. Rapp is battling cancer and is getting help from Hospice Care of Middletown.

Staff photo by Nick Graham Tom Rapp, an AIDS advocate who is an active volunteer in the community, sits at the dining room table of his home Monday, Oct. 5, 2009 in Middletown, Ohio. Rapp is battling cancer and is getting help from Hospice Care of Middletown.

By Rick McCrabb, Staff Writer Updated 8:25 AM Wednesday, October 28, 2009

Editor’s note: This is part of a monthlong series on the battle against cancer.

MIDDLETOWN — Jeanette Evans is one of Tom Rapp’s nurses and friends, and in her eyes, the roles are equally important. She can’t separate the cancer and the camaraderie.

Evans, a nurse for Hospice Care of Middletown, visits him at least once a week, and they talk — sometimes for hours — a few times a week.

This has been a difficult case for Evans. Rapp, 60, diagnosed with incurable cancer about a year ago, admits the disease is winning.

“I’m just waiting to die,” he said.

“It breaks my heart,” said Evans, a hospice nurse for four years.

She recently found more cancerous knots on Rapp’s body.

“We cry on each other a lot,” she said. “We take turns crying on each other’s shoulders.”

She’s also consoling Rapp’s 84-year-old mother, Norma Rapp, and Rapp’s longtime partner, Gary Sheffield, who both live with him on Baltimore Street in Middletown.

“It’s really hard right now,” Evans said Friday, Oct. 23. “He wants me to be honest. That’s just how he is. I tell him the best scenario. Then he says, ‘Now be honest.’ ”

So she is. “You’re slowly ... getting worse.

“He was so spunky; he had an ornery side,” she said. “He was determined to fight this thing. But now he knows the end is near.”

How can she work with the terminally ill?

“You just have to have compassion; have to care about the people,” she said. “You have to remember it could be you in that spot.”

‘This is the hand that God has dealt me’

Tom Rapp has spent much of his adult life helping others. He volunteers twice a week at the Franklin Area Community Services food pantry, and 18 years ago, along with Gary Sheffield, founded Arms of Love, an organization that assists AIDS and HIV patients in his hometown of Springfield.

Now, Rapp is dependent on others. The 60-year-old Middletown resident was diagnosed with incurable cancer about a year ago. Hospice Care of Middletown nurses and aides have taken over his care.

He has weeks, not years.

“It’s all I can do to keep from crying,” said Gary Sheffield, Rapp’s partner for the last 28 years. “It doesn’t seem real that this is happening to him. He was always so happy-go-lucky. Now look at him.”

He’s not the same man known throughout the city for his colorful remarks at Middletown City Council meetings. But he’s tackling cancer with the same vigor — and sometimes vulgarity.

“Believe me,” he said, “this isn’t the way I thought I’d go. But it doesn’t always work out the way you planned. We cannot question God. I’m not afraid to die.”

When he met his oncologist, he put it in classic Tom Rapp fashion: “Be honest,” he told his doctor. “Don’t jerk me around.”

The chemotherapy treatments couldn’t stop the cancer from spreading from his shoulder and neck to his brain and his bones. He described the chemo treatments as “taking the wind out of you; it tears you up.”

He’s off the treatments now, and refuses a feeding tube. He took a puff off his King Mountain cigarette and said: “What else can I do? This is the hand that God has dealt me.”

The pain, he said, is like “somebody is sticking me with a knife and twisting the damn thing. The pain is so bad it makes you want to throw up, but I refuse to quit.”

That’s a trait Rapp learned through his years of working with HIV and AIDS patients. In 1991, Rapp and Sheffield formed Arms of Love, an agency that Rapp estimated assisted more than 400 people through the years.

“There was so much need for it back then,” Rapp said. “You didn’t dare talk about AIDS, or anything like that. It was taboo.”

Several of the clients who lived in Arms of Love facilities, including children, died in Rapp’s arms.

Rapp, his mother, Norma Rapp, 84, and Sheffield moved to Baltimore Street in Middletown seven years ago. The living room resembles a hospital room. Sheffield, a diabetic, suffers from emphysema and congestive heart failure. His breathing machine sits next to the couch where he sleeps every night. There is a mound of pills on a coffee table.

Rapp worries about who will care for his mother and Sheffield when he dies.

Earlier this month, Rapp made his funeral arrangements at Richards, Raff and Dunbar Funeral Home in Springfield, where his family lives. He wants to wear blue jeans, a T-shirt and hold a pack of cigarettes during his visitation.

“I may wake up,” he said with a smile, “and want one.”

Then, as a cost-cutting measure, his body will be cremated and his ashes will be scattered on his grandfather’s farm in Cambridge, Ohio, a place Rapp cherished as a child.

He’ll do anything for his Baltimore Street neighbors — “these are good people,” he said — and he volunteers a few hours a week at the Franklin Area Community Services food pantry. He wishes he could do more. Cancer is robbing him of his energy.

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