"The following article is reprinted with permission of Shore Publishing and was first published in the Lyme Times."

Wife's Death Spurs Local Man to Help Others
Widower Forms Carcinoid Cancer Support Group to spread awareness of rare cancer

Bob Getman of Old Lyme, makes his work a legacy to his wife Diane's death.

By Joanne M. Godfrey
Times Staff Writer

Old Lyme - Bob Getman couldn't reach the goals he set as caretaker for his dying wife, Diane.
But when he could not reach those goals one by one, he set a new course to help raise awareness of Diane's disease. His efforts have led to recognition by Gov. John Rowland and the designation of May as Carcinoid Cancer Month in Connecticut. On April 29, Getman expected to meet with Rowland for the official recognition of his efforts.
Beginning in October 2002, Getman had began caring for his wife, then ill with
the fairly common Irritable Bowel Syndrome.
"Then I became a caregiver for Diane's asthma, her Crohn's disease, her gastro problems, anxiety and depression and her hot flushes and palpitations," he said, "and soon I wasn't a caregiver anymore."
Last May, Diane died of hard-to-diagnose carcinoid cancer, five days after her 70th birthday.
A carcinoid cancer is a slow-growing type that originates primarily in the respiratory and gastrointestinal tracts, including the liver. The cancers are often undetectable until they metastasize, although they are secreting higher concentrations of fluids, such as serotonin.
The problem is that doctors don't check every organ and fluid because the symptoms are vague. Diane Getman was made to feel that her illness was "all in her head." The main symptom for many patients is blushing from exercise, for example, as well as diarrhea and wheezing.
After he recovered somewhat from her death, Getman was staying at their family cabin thinking what sense he could make of all this. What made most sense was starting an awareness program in Connecticut, for so little was known by doctors who rarely see the disease. The Carcinoid Cancer Foundation in White Plains calls it an "orphan illness."
"Research and progress in treating the condition has been limited," their brochure says. Getman knew of a group in Danbury that had been fairly quiet, so he got in touch with them, and last December had the first meeting of patients and caregivers in the newly formed Connecticut Carcinoid Initiative. Getman calls himself the coordinator and spends about 30 hours a week working on the group.
Now about 15 to 20 people come to the auditorium at the Connecticut Veterans Home and Hospital in Rocky Hill at 2 p.m. on the second Sunday each month to hear the latest discoveries. After the formal part of each CCI meeting, the support group meets.
"My primary purpose was awareness," Getman said. "But once you get around a table, the support group developed naturally. Every new patient thinks he's alone."
Getman said the Connecticut Tumor Registry listed 22,000 tumors last year, with only 60 or 70 of those being carcinoids. If he could see that number go up each year because of better doctor diagnosis, he said, that would show his group had made progress.
One big program planned for May 20 (Diane's birthday) at 7 p.m. is the appearance of Dr. Bernie Siegel from Yale, who formed the Exceptional Cancer Patients group. The program is free and open to the public. Siegel's appearance is one of the cornerstones of CCI's public awareness.
Another is networking, tracking down other carcinoid patients. Here, he credits Dr. Anthony Polednak, director of the Connecticut Tumor Registry at John Dempsey Hospital, who, with patient permission, tells Getman about the new listing.
And a third key is raising doctors' awareness to the masquerading disease. The CCI members have been doing the mailing, which includes basic information, as well as a small plastic ruler with "Carcinoid - Don't RULE it out!!!!"
The members have mailed out about 1,000 since March, and Getman has heard from four doctors, not a bad number considering their schedules.
"Next month we'll start another round with dermatologists (symptoms like roseola can appear) and allergists," Getman said. "I'm also trying to get to malpractice companies. I think it's a natural."
Getman plans in May to meet with Irvin Modlin, of the Yale School of Medicine, the leading researcher in Getman's opinion, to plan for a symposium for doctors and appropriate government officials.
Getman is progressing well enough now that a year later he can remember the 51 years together with his wife and more than ever appreciates their five children.
In spite of his years at the Coast Guard Academy, as executive officer of a polar icebreaker and as director of the home section of the Veterans Home in Rocky Hill, CCI is now always on his mind. But in those years before, he always successfully took charge of large projects - running ships and veterans' homes - and expects this large project of public education will run well also.
When he thinks of Diane's last days a year ago, he can't say enough about the support from Middlesex Hospital's Hospice Unit.
"Nineteen of the family were there," he said. "We stayed over."
Getman has made up large photo frames of snapshots of Diane, which he walks past in the hall of his house. But that is the past. Now he's on the way to his office in the basement, where his computer is and where he can get more letters out. He's here to make a difference.
"This is her legacy," he said.
For information on the Connecticut Carcinoid Initiative, call Bob Getman at 860-434-2682. CCI's website is under development. Some information is available at www.carcinoid.org.