[Originally published in the Hampshire Gazette on Friday, December 08, 2006]

Cancer Connection offers a slew of free activities, therapies and support groups. Here, Linda Karpman of Longmeadow takes part in a reiki session - a very light massage - with therapist Linda Neas at a 'Reiki Night' last month at the center in Florence.

Jackie Walker had just arrived at work when the call came in. A panic-stricken man was on the line, not sure where to turn, but wanting to talk about what he'd just been told: He had cancer.

He was calling from California; he had found Walker at Cancer Connection in Florence through an Internet search.

'I'd just walked in and hadn't even taken off my coat,' Walker recalls. 'He was hysterical - he'd just found out the day before and he hadn't slept all night. He needed to talk to someone. So I just listened to him. I let him cry and told him people would be there for him. ... we ended up talking for an hour.'

Counseling a man 3,000 miles away about a dreaded disease might have been an unusual task for Walker. But only the distance made it so.

Since founding their nonprofit organization six years ago, Walker and co-director Deb Orgera have been offering cancer patients and their families just that kind of spontaneous support. From private conversations and support groups, to free stress-reducing activities like reiki and yoga and physical workouts like rowing and swimming, Cancer Connection has worked to give patients of all ages the kind of emotional buffer hospitals and physicians often can't provide.

And, the two women say, it's that kind of support that helps cancer patients deal with the many facets of the disease: the sickness, the side effects of treatment, the fear that it can recur even after years of dormancy. It's the isolation and depression that cancer can bring - and the stress it can cause caregivers - that Cancer Connection has worked to combat.

When it comes to understanding those conditions, Orgera, 53, and Walker, 61, draw on firsthand experience. Walker had breast cancer in the early 1990s, while Orgera lost a sister to the disease around the same time.

'It's a total, life-altering event,' says Walker, 61, a former pediatric nursing supervisor. 'And you can feel so alone, like there's nowhere to turn.'

Orgera says she was grief-stricken not only by the loss of her sister, who was 48, but by the fact that her sister's three children were left motherless. '[My sister's] children now have children, and the fact that they don't have a grandmother just kills me,' she says.

IN THE SIX YEARS since they formed Cancer Connection, Orgera and Walker have won the hearts of scores of people who have walked through the doors of their modest office in the Silk Mill building in Florence. The same adjectives come up over and over in conversations about them: warm, caring, open, life-affirming, and generous.

' "Warm and caring' really define Jackie and Deb,' says Robert August of Whately, who developed prostate cancer about 10 years ago. 'There's something almost motherly about them - they make you feel at home, like you're part of a family. They're great listeners.'

August, 64, first came to Cancer Connection in 2002 at the suggestion of his wife, who had heard about the group and then saw an ad about a reiki session - a gentle massage of very light touch - that Cancer Connection was sponsoring. August says he was reluctant at first, but before long had tried reiki and enjoyed it. Then he joined a men's support group at the center.

'Our group is still going, with some of the original members, which is kind of unusual for a support group,' says August. 'In fact, it's a little unusual to have a men's group even discussing this kind of thing.'

Yet Orgera and Walker have a knack for encouraging people, says Craig Collins, who leads an aquatic aerobics class for Cancer Connection clients. 'Deb and Jackie have so much energy and enthusiasm, it's really contagious,' he says.

EARLY IN NOVEMBER, Orgera and Walker were seated at a table in the Cancer Connection office, a comfortable place resembling an oversized living room, with a carpeted floor, upholstered chairs and couches, and a large fish tank.

'Everything you see here has been donated,' said Orgera, gesturing toward the furniture, paintings and other artwork, and wooden cabinets. 'Everything but that dish drain,' she added with a laugh, indicating a plastic drain next to a sink.

'I think we got that for $3.99 at Wal-Mart,' Walker chimed in.

Orgera and Walker, who run their operation with a collection of grants and private donations, were in the midst of discussing the week's events when Walter Cohoon of Southampton walked in, about 10 minutes early for the men's support group meeting.

'Hey, Walter, how are you?' said Orgera, waving her arm. 'C'mon over and join us.'

Cohoon sat down and chatted for a few minutes, cracking some jokes about his support group.

'You know, we should send you guys to camp,' said Orgera, a reference to an outdoors facility in Montana. 'We sent the ovarian group, why not you guys?'

'We're men, we don't go to camp,' replied Cohoon. 'The last camp a man goes to is boot camp, and that's it - you're through after that,' he said, prompting laughs all around.

The people who come to Cancer Connection say this kind of informal ambiance is just what they need.

'You can be very honest here,' says Linda Karpman of Longmeadow, who has both taught Cancer Connection classes and attended them. 'Some people walk in and sit down and just start crying,' says Walker. 'And we say, "It's OK, go ahead, just let it out and relax.' '

Orgera and Walker, along with office manager Sibyl Smith, staff the office during weekday mornings and occasionally in the afternoons, while most afternoons and evenings the space is used for a range of activities - as many as 10 events per week - and support group meetings.

Karpman, who's 57, had been one of the Cancer Connection's reiki practitioners before developing ovarian cancer some three years ago; she now comes for the treatment herself and to be part of a support group.

'When you have cancer, you can find yourself living in limbo,' says Karpman, who also battled breast cancer in the early 1990s. 'It's hard to stay in the moment. But Jackie and Deb are so open and so real, and they work really hard to keep us grounded.'

THE GENESIS OF Cancer Connection dates back to the early 1990s, after Walker, then 48, developed breast cancer. Though she was married with two sons, she says she felt isolated. 'I didn't know anyone else who had this,' she says.

At the same time, Orgera's sister, Linda Cosentino, developed breast cancer. Orgera flew to Atlanta to be with Cosentino and her children before she died while Orgera's husband and two young sons stayed behind. It was a chaotic time, Orgera recalls.

When she came home, Orgera decided to turn her grief into action by mounting a fundraising effort to benefit breast cancer research. A Gazette columnist wrote about what Orgera was doing, and Walker, after reading it, felt a call to action herself - though she had to overcome her shyness to contact Orgera.

'I carried that article around for two weeks before I had the nerve to call her,' says Walker. 'I wasn't in a support group, I wasn't an activist, and I think I was just in denial ... about what had happened to me.'

But finally she called. 'We talked forever,' says Walker. They began consulting local health practitioners and other caregivers about ways to confront breast cancer. That led to the formation of the Pioneer Valley Breast Cancer Network, a coalition of people who raised money on a volunteer basis to build awareness of the disease and help direct women to local agencies offering services. The coalition also gathered signatures for petitions sent to Washington, D.C. calling for more federal funding to combat breast cancer.

By late 1999, though, the two women had decided to set up their own service-based organization - one that would support people with all types of cancer. 'We realized breast cancer wasn't the only thing out there,' says Orgera. 'And we decided political change is really a luxury. People need direct services.'

With that in mind, adds Orgera, 'We basically talked to everyone we thought could help us and asked, "How can we do this?' ' That included consulting with groups like the Valley Community Development Corporation to create a business plan and to grant writers, other nonprofit groups and financial organizations about how they could secure funding. They established a board of directors, consisting of local people including doctors and other medical personnel.

With help from Cooley Dickinson Hospital in Northampton, which paid for six months' rent, they set up shop in the Silk Mill building in Florence, one floor above their current location.

Then, using some of their initial grant money, they hired instructors to lead activity groups such as yoga and reiki. By early 2000, they'd both left their jobs (Orgera had been the program director at the Five College Coastal and Marine Science program, based at Smith College in Northampton) to devote themselves to Cancer Connection.

They didn't make the decision lightly: At first neither woman drew a salary for her work. But, they say, their families supported the decision. Walker's husband is a retired environmental engineer who worked at Westover Joint Air Reserve Base in Chicopee, while Orgera's husband, a former electrical contractor, directs the western Massachusetts office, based at Holyoke Community College, of the state's adult education program.

'We both just felt, "What could be more important than this?' ' says Walker, who notes that her mother, grandmother and two aunts also had cancer.

Initially they focused exclusively on offering activities, but after a year or so they began adding support groups as well. 'When people got to know each other, they wanted to talk about how they felt, how they were coping,' says Orgera. 'They didn't want to just be doing stuff side by side.'

The activities themselves - free for all participants - have been broadened over the years and now include art, writing, knitting, meditation and numerous other topics. Instructors get paid $50 an hour, and some, such as Mary Ann Kelly, who teaches reiki, say they're more than willing to take less money than they make in private practice to lead the group sessions. Many of the instructors, like her, have also seen family members or friends battling cancer.

'I'm happy to contribute my time,' says Kelly, a Northampton artist who has staged some fundraisers on her own for the group. 'Cancer touches so many of us.'

Orgera and Walker have also staked out clear roles for themselves over the years. Orgera handles grant writing, budgeting, program scheduling and publicity. She also oversees the bookkeeping, with assistance from private consultants. Walker does much of the one-on-one talking with new clients.

Though she doesn't dispense medical advice, her background as a nurse is helpful in talking to clients about their symptoms and possible treatments, Walker says. 'We encourage patients to be advocates for themselves, and we tell them they're entitled to a second opinion.'

The two like to needle each other about this division of responsibilities. 'At business meetings, all I was allowed to do was talk about cancer,' says Walker.

'Well, I didn't set up my life goal to be a numbers person, but that's what happened,' jokes Orgera. She allows that she had some experience from managing the books for her husband's former electrical business but says she's had to learn much of what she does today through on-the-job training.

'And here I thought you knew it all,' says Walker, eyebrows slightly arched.

'You're easy to fool,' retorts Orgera.

Such humor, both women say - even gallows humor - is vital in their line of work. Orgera, who has short, spiky hair and an infectious laugh, often aims her barbs at herself. Walker is more reserved but also flashes a dry wit.

'You have to be able to laugh,' says Walker. 'Otherwise we wouldn't be able to do this, because we have to deal with sadness and loss on a regular basis.'

FOR SIX YEARS Orgera and Walker have cobbled together grants and money from fundraisers and private donations to do what they do. But now their organization finds itself at a crossroads. When one of its major fundraisers fell through this year, Cancer Connection was left about $48,000 short of its $160,000 budget.

The organization gets no state or federal funding, Orgera says, nor can it depend on money from national groups like the American Cancer Society. Most national organizations either don't fund local groups like hers, she says, or attach conditions to the funding that make it hard to use.

For example, Orgera recalls a frustrating exchange she had last year with an ACS office in Framingham. It was offering a grant for men with prostate cancer, she says, but balked at the idea of funding Cancer Connection unless all the men in its support group had prostate cancer.

'I said, "Well, 50 percent of them have it,' and they said, "Well, that's not enough,' ' says Orgera, who slaps her forehead and laughs a bit mirthlessly. 'I mean, why discriminate about types of cancer? If I'm going to fund a group where five men have prostate cancer, why not let another five men [with other types of cancer] join them?'

Cancer Connection had 600 patients and family members take part in its programs last year, but Orgera and Walker fear that many people in the area - and certainly state- or regionwide - don't know about the organization. 'It's not a natural thing to hear about us unless it's by word of mouth,' says Orgera. Referrals from doctors are getting better but are not a given, she adds: 'It's still a crap shoot whether [patients] hear about us.'

She and Walker also wonder how many people who contribute to major ACS fundraising events like the annual Relay for Life at Look Park - where participants do laps around the park and raise money for each mile they cover - realize those funds don't go to local groups like Cancer Connection.

Some of that funding undoubtedly goes to research, Walker says - an important cause, she adds - 'but I get upset when people confuse us with [ACS] and they think they're supporting us through them. That's not the case.'

In late October, Cancer Connection sent out some 2,000 mailings to supporters and others in the area explaining the scope of their financial problems and asking for help. The initial response has been good, says Orgera, though a full accounting won't take place until the end of the year.

'For us, it's make or break time,' she notes. 'If the community doesn't say "You're important to us,' we're out of here.'

That, says Kelly, the Northampton reiki instructor, would be a huge loss. Kelly, who also teaches reflexology and yoga, has been doing work at the Cancer Connection since 2002 and has long been impressed with how Orgera and Walker have made the organization a place where anyone touched by cancer - not just patients themselves - can feel welcome.

'This a unique place,' says Kelly, whose mother and brother had cancer. 'Deb and Jackie both realized early on that this was what missing [in cancer treatment] - a place where patients could go and relax, and caregivers could learn how to take care of people. The community really needs this resource.'

AMALIA NEAL FOURHAWKS of Florence would vouch for that. In mid-November, she was splashing around the Clarke School for the Deaf pool with 11 other people in a Cancer Connection aquatic aerobics class led by Craig Collins. Creedence Clearwater Revival's 'Proud Mary' was blasting from a boombox.

She says that working out in the pool is a way to deal with some of the anxiety, grief and anger she's had to contend with since her husband, Leonard, was diagnosed with cancer a few years ago. She's also done meditation and reiki at Orgera and Walker's center, while her husband has joined the men's support group.

'This is all about empowering people,' says FourHawks. 'This isn't a place where someone takes pity on you and says, "Oh, you poor cancer victim.' It's about being proactive and helping yourself, and helping others.'

Even as they help others, Orgera and Walker say they often find themselves struggling from the effort. They go to a therapist on a weekly basis so that they can talk about the stress of their work and the emotional toll of losing clients they've grown close to.

'You buck up while [a client] is here, but you take it in,' says Orgera. 'You can't avoid it. And we have to find a way to deal with that.'

Walker's Border collie helps her unwind. The dog, she says, 'takes me right out of my misery. I can go from "cancer' to "ball' in a minute when I'm with him.' Walker, who's been cancer-free for over 13 years now, also enjoys gardening and photography. Orgera will sometimes work out at the YMCA, and she also sings in the Hampshire Choral Society.

Both are hopeful they'll be able to raise enough money to keep Cancer Connection going (see sidebar). Orgera says they're working on ways right now to find some savings. At a meeting in November, Orgera talked with a number of workshop leaders about dropping some activities that aren't well attended, or restructuring services in some way.

'I know some [instructors] aren't going to be happy about this,' she says with a half smile, half grimace.

And if Cancer Connection were to close? 'People could survive without us,' Orgera says. 'They could still get treatment and hospital-based care. But I think something would be missing.'

One measure of the group's impact is a storage room, just off the main space in the center. It's filled with wigs, prosthetic breasts and other props - a plastic head one woman used to hold her wig at night - that clients and their families have donated. Some are from people who beat their cancer; some are from family members and friends of people who didn't.

"There's a lot of emotion tied up in this room," says Orgera, standing at the entrance and gazing at the collection. "You know, it gives people some closure to bring something here and say, 'Cancer, hopefully I'm done with you'."

Steve Pfarrer can be reached at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

The hunt for funds is never-ending...

[ Originally published on: Friday, December 08, 2006 ]

So how exactly does a small nonprofit group like Cancer Connection offer free services to some 600 cancer patients and family members a year?

By constantly raising money.

Co-founder Deb Orgera says a little over a third of her group's $160,000 budget - $55,000 - comes from individual donations, many of them in the $25 to $50 range. Another $50,000 comes from grants from small organizations, and the rest is made up through a number of fundraising events, including a golf tournament and a walkathon called 'Bill's Challenge' that's named for the first male client the group ever had.

Cancer Connection's biggest donor generally is Rays of Hope, a Springfield nonprofit group that sponsors an annual walkathon to raise money for breast cancer treatment and research. This year the organization received $23,415 from Rays of Hope, Orgera says, though some past contributions were even larger.

'They were the first organization to fund us when we were starting out,' she adds.

Most other grants are considerably smaller, she says, and often come from local and regional sources. This year that includes the Community Foundation of Western Massachusetts; the Frank Stanley Beveridge Foundation of Westfield; the Xeric Foundation (founded by 'Ninja Turtles' co-creator Peter Laird); and C&S Wholesale Grocers. The Clarke School for the Deaf also lends the use of its pool for aquatic aerobics classes.

Orgera says she and Cancer Connection co-founder Jackie Walker have given up trying to get funding from large organizations like the American Cancer Society and the Lance Armstrong Foundation, saying it's too difficult to meet the restrictions for usage those groups impose on their funding.

The group tries to keep its overhead low. Both Orgera and Walker work about 22 hours a week at a rate - less than $20 an hour - that they say is a good bit less than what they earned before they started Cancer Connection. They also turned down an increase and a Christmas bonus offered to them this year by the board of directors. 'Given our financial situation, we couldn't justify taking that,' says Walker.

Other expenses include rent, utilities and payments to an office manager, workshop leaders, and private consultants who do some bookkeeping and data management.

Cancer Connection will have an open house next Tuesday at its headquarters at the Silk Mill building on Locust Street in Florence from 4 to 7 p.m.

More information is available at www.cancer-connection.org.

- Steve Pfarrer