When it comes to cancer, you can never have too much information
As attendees filed into the conference room, the speaker dimmed the lights, fired up his PowerPoint presentation, and shot a question at the crowd.
"Which would you rather hear about, new treatments in cancer care, or sickle-cell anemia?"
"Both," several people murmured in response.
Most people probably would not relish spending an afternoon hearing about such serious and potentially depressing health topics. But the people in the conference room on Jan. 5 at the Charlotte Kimelman Cancer Institute were not just any people. They were cancer sufferers, survivors, and friends and relatives of those with the disease, listening to a lecture organized by Cancer Support V.I., a free support group for anyone whose life is affected by cancer.
As Dr. Eric Sandler, a pediatric oncologist, made his way through the slides, attendees asked very thoughtful and informed questions. One man inquired whether or not hyperbaric oxygen therapy was useful for sickle-cell anemia. Another wondered out loud about the cost-benefit value of cancer drugs that cost millions to produce but only help extend lives by weeks or months.
For Charlene Kehoe, the moment was golden. Not long ago these types of discussions weren’t happening, and cancer patients in the Virgin Islands were not a well-supported group. So Kehoe, who is director of CSVI, set out to change that.
"We had a focus group five years ago, to get ideas from cancer survivors about what they needed," Kehoe said. "They told us ‘information.’"
Since then, CSVI has arranged an array of services in conjunction with the Kimelman Cancer Institute, to help those who are newly-diagnosed or recovering get the help and information they need. In addition to the lecture series, of which Sandler’s talk was a part, CSVI offers patient-to-patient assistance, financial grants, and help navigating social services.
"We work with everyone in the field, from doctors, to hospice, to DHSS, to social workers," Kehoe said. "We try to create a team, where we’re all on a first-name basis. We can plug people into each other, and help guide them through the system, which is a big help."
She told of a man from St. Croix with throat cancer who had to fly back and forth repeatedly from St. Croix to St. Thomas for chemotherapy. Due to the upheaval, his power was shut off, he lost his apartment, and was forced to stay with a friend in public housing.
Kehoe knew he should be eligible for government assistance. So she called every office in every department until she got all relevant agencies involved, and got him food stamps and various other types of help.
Financial grants of as much as $1,500, per person per year, help uninsured and needy patients cover the cost of certain treatments, hotel stays, travel, hospice, and bills.
The fund, which was set up in association with the Community Foundation of the Virgin Islands and is primarily funded by International Capital & Management Company, also get monies from a combination of charity fundraising events and anonymous donors.
The money is intrumental in helping people such as the cervical cancer patient with three teenage daughters, who was getting behind in rent and feared being evicted. CSVI gave her $1,500 to help pay the rent, and also bought a wheelchair for her.
Kehoe is thrilled with how much the group has helped change cancer support for the better.
"Cancer used to be sort of a dirty word, and no one knew where to get help, except their own doctor," she said. "Now with CSVI and the Kimelman Center, it’s all been brought out in the open."
Though CSVI has a mailing list of more than 200 people, Kehoe said that in 2011 they will continue to reach out to more patients, and refine and grow the scope of services they provide to people with cancer in the community.
Their fifth annual fundraiser, a Venetian Carnival Masquerade Ball, will be held March 5. The lecture series, which happens on the first Wednesday of the month at noon and 7 p.m., will include topics going forward such as personalized medicine, breast cancer in young women, and cooking healthy foods for cancer prevention and recurrence.
Since cancer can be a mysterious and devastating diagnosis, being informed can make the difference between feeling lost, and feeling in control.
"When you have your health, you take things for granted," said one attendee of the lecture, who declined to be identified. "But when you’re sick, everything is turned upside down. It’s reassuring to be able to keep on top of what’s happening."
Further information about CSVI can be found online at www.cancersupportvi.com.