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  September 11, 2000

Community Willing to Share
The Care in Times of Trouble

Life was looking good for Cameron Macdonald and Greg Williams back in early March 1997. Cameron, about to complete her Ph.D. at Brandeis University, had a job offer in hand and she and Greg were looking forward to settling down and starting a family.

But the day that Cameron decided to accept the offer of a tenure-track faculty position at UConn was the day their lives began to fall apart. Greg returned from what he expected to be a routine doctor's visit with the news that a lump on the side of his face was a tumor. And from that time on, the news kept getting worse as, in Cameron's words, last week's worst case scenario became this week's best case scenario.

The months and years that followed saw the couple physically, emotionally and financially drained from the ravages of cancer and its almost equally deadly treatment - not to mention the emotional roller-coaster of hope and disappointment. But although the couple were newcomers to Storrs, the community rallied round to help them through an extraordinarily stressful period their lives. Without that support, Greg might not have made it this far.

The Need for Help
From the beginning, says Cameron, an assistant professor of sociology, her department was supportive. She was able to negotiate a reduced teaching load in her first semester, commuting to campus from Massachusetts while Greg completed an 18-week session of chemotherapy.

"Wayne Villemez, the department head, went out of his way to help me and people were understanding," she says. "Yet I felt insecure because I wasn't fully there. I felt I was not carrying my load."

With the chemotherapy behind them, however, the couple were optimistic - even though a bad case of shingles that landed Greg in the emergency room on the day of the move did not augur well.

As the months went by in their new home, Greg's energy diminished and he felt sicker and sicker. A self-described workaholic, he had a string of jobs lined up remodeling houses but had to give them all up. "I hadn't realized how much work shaped my identity," he says.

Less than a year after their arrival in Storrs, Greg was told his lymphoma had recurred. The cancer, said his doctors, was back and might never have left. They recommended a radical but state-of-the-art treatment known as stem cell transplant, that eradicates the cancer cells but annihilates the patient's immune system. Recovery was expected to take many months, with the likelihood of side effects that Cameron likens to "Old Testament plagues."

As they contemplated the treatment, the hospital social worker told them they would need a network of people to help. "I went in with my insurance booklet," says Cameron. "I assumed it paid for home health care, but I found that was not the case unless Greg was immobile and needed to be lifted. Yet his condition was so serious that I couldn't leave him for more than 30 minutes. He needed 24-hour care."

Not only did Greg need care and companionship during his recovery at home, he needed medical procedures in a sterile environment, including maintaining and flushing a central line catheter and changing the dressing every day. "I also had to keep track of 25 medications," says Cameron. "I got really, really overwhelmed."

Cameron was caught in a double bind: she could not relinquish her job to take care of Greg around the clock or they would lose their medical insurance. Yet she also found it hard to ask for help: "I am very self-sufficient," she says.

Reaching Out
Word of Greg's illness had gotten out, however. "People kept coming up to me and asking if they could do anything to help," says Cameron, "and I would say, well, actually ..." She didn't realize until later that if she had not been able to demonstrate that she had adequate resources to provide home care, including a care network, Greg would have been denied treatment.

Following a model known as "share the care," described in a book given to Cameron at the hospital, a group of 30 friends - from the department, other University units and from the local community - got together for an organizational meeting.

"We had only lived in Storrs for nine months," says Cameron, "yet there was an extraordinary neighborliness."

Soon the various tasks had been parceled out, including shifts to provide direct care and transportation to the medical appointments that were scheduled sometimes four or five times a week.

"Often when people are in a situation like this, friends want to help but don't know how to," says Kay Ratcliff, a professor of sociology who joined the network from the start and later became coordinator. "Share the care set up a method for people to be involved without feeling like they were intruding."

One volunteer helped Cameron clean and disinfect the house every week, while another took Greg out so he would not be exposed to the dust. Myra Ferree, a professor of sociology now teaching at the University of Wisconsin-Madison, organized the cooking team, even though for much of the time Greg was on a special diet that meant he could only eat heavily processed food.

"The freezer compartment in the sociology department was always full of Tupperware," says Cameron. "For six to eight months we ate out of the freezer." And when the couple decided to renew their marriage vows in a church ceremony on the eve of a treatment they feared he might not survive, Myra hosted a potluck reception at her house for 60 guests.

Direct care for Greg at home was not always easy. In addition to the typical side effects of chemotherapy, Greg's treatment produced staph infections, severe osteoporosis, hallucinations and severe agitation. "There was not a week when something major did not happen," says Cameron.

Members of the group took it all in stride, however, with help from the couple's robust sense of humor. "They would make light of these incredible life-and-death situations," says Kay, "and we would laugh with them."

Overcoming Isolation
Through the care network, Cameron and Greg developed some close friendships. One was with sociology professor Ken Neubeck.

"We found we shared an interest in hiking," says Neubeck. "Greg is a very physically active person and I had a hard time keeping up with him on the trail." They also - when Greg was well enough - worked out together in Hawley Armory, went to movies and delighted in finding out-of-the-way restaurants.

Friendships like this were a life-saver, says Greg.

"The most horrible thing was the isolation," he says. "The people in the care network helped me keep my spirits up without realizing it. It was communication with other human beings that kept me going."

As so often happens in volunteering, the members of the care network felt enriched by the experience too. "Greg was very inspirational to me," says Neubeck.

Danielle Currier, a Ph.D. student in sociology, says she wishes everybody could participate in a care network. "Not that they should see somebody wonderful suffering," she says, "but I wish everybody could see how important it is for us as human beings to help each other and reach out to each other."

Somehow, throughout the crisis, Cameron continued to teach. Doing research was harder. "Students provide a good distraction," she says, "but sitting alone at a computer, I find it hard not to think about cancer or what's going on at home."

Still, she was able to prepare a grant proposal sufficiently outstanding to land a prestigious Bunting Fellowship at Harvard University this academic year.

Policy Implications
Thankful as they are for the enormous personal support they have received, Cameron and Greg - and members of the care network, too - are concerned about the policy implications of their situation.

"The idea that someone could be denied life-saving medical treatment because they have inadequate social support is unacceptable," says Cameron. "It's a great thing that the community rallies round, but every time family members make up for inpatient hospitalizat ion, we let medical providers and insurance companies off the hook."

A more balanced mix of inpatient and outpatient care would help, they say, as well as more medical support at home paid by insurance.

For now, Greg and Cameron are facing the future with the same mix of courage and good humor that has brought them this far.

"I've enjoyed this second chance at life so much," says Greg. "I've learned to take pleasure in simpler things and be grateful for them."

Elizabeth Omara-Otunnu