The group that exchanges information about myeloma each month in Grand Island is no ordinary support group.
Attendees travel from McCook, Omaha, Columbus, Albion, Lexington,Kearney and other Nebraska communities.
An average of 30 to 35 people attend the meetings, which are coordinated by Dr. Jim Omel and Arlene Preisendorf.
“They come because we give them good information,” Omel said. “They come to learn. Myeloma is one of those cancers that is not curable. There is no cure, and yet there are still good treatments.”
People have to know how to put those treatments together logically in order to come up with a successful outcome, he said.
The group meets from 10 am. to noon on the third Wednesday of each month in the gathering place of Evangelical Free Church.
The only other myeloma support group in Nebraska is in Omaha, but that group doesn’t meet consistently. So it’s clear that Grand Island is home to the best myeloma support group in Nebraska.
Myeloma is a cancer of plasma cells, a type of white blood cell, in the bone marrow. The cause is unknown. One of the early symptoms is often back pain.
Two people who come to Grand Island every month are Byron and Jean Burns, who farm east of Litchfield.
Byron’s myeloma was diagnosed in July 2014, when he spent 17 days in Good Samaritan Hospital in Kearney. He had pneumonia and was on a ventilator for three of those days.
When he was in the hospital, he was very concerned about his farm. Neighbors pitched in, taking care of the irrigation, checking the cattle and putting up hay. Their kids were also home to help. That fall, Byron sold his 150 cattle.
He fought the idea of coming to the support group for a couple of months. But friends pushed him, and he’s glad he showed up.
“Without Jim and Arlene, I don’t know where we’d be,” says Burns, 65.
Bob Polk of Kearney says the meetings help “boost you up” and give “you a lot better attitude about things.”
He likes to find out what other people are doing about the disease, and confirm if he’s doing the right thing.
“It’s nice to be exposed to people that have been through the same thing you have,” said Polk, 69.
Because Omel keeps them up-to-date about drugs, Ron Jurgensen of Kearney feels qualified to be able to talk to his own doctor.
Instead of having his doctor tell him what to do, “I can suggest, ‘Well, what if I do this’”?
Another attendee, Jim Vetter, isn’t thinking about himself.
“I’m here for my granddaughter,” he said. “That’s why I’m still trying to exist.”
The Central Nebraska Myeloma Support Group was started 20 years ago by Mary Lou Russell. Omel came aboard shortly after it started.
Myeloma is “one of those cancers that is treatable, but you have to make good decisions,” Omel said.
Some of those decisions are big ones, such as should the patient have a stem cell transplant or not?
With the information he gives them, Omel says, people can speak knowledgeably to their doctors about those big decisions.
Omel says he’s “extremely proud” of the support group, and the way each member helps the other.
At the meetings, one person will bring up a subject, and several people with join in, sharing their own experiences.
They might offer advice about a person’s lab result.
Another might say, “My current treatment is failing. What ideas or suggestions do you have?”
People wouldn’t keep coming to the meetings “unless they were getting something out of it every month,” Omel says.
He promises that each month he will teach them something they don’t know.
He prepares for each meeting in-depth. “For a two-hour meeting, I spend six to eight hours getting ready for it,” he says.
Omel frequently attends national meetings about myeloma, and is an adviser to some organizations. This year, he’ll travel to Ireland and Montreal. Earlier this year, he went to Paris.
From those gatherings, he brings back the latest information to share with the group.
Omel, who worked as a family practitioner, found out that he had myeloma when he was 50. He retired three years later to take care of his wife, Patty. He is now 71.
“Myeloma is something I would never have wanted, but it has opened up so many doors, and given me so many ways to help so many people. It’s given me a purpose in life,” he says.
Patty died of multiple sclerosis in September at the age of 71. Omel says taking care of her “was my entire world.”
“She died and now I still have a reason to be helpful and useful to people with myeloma,” he said.
Because it’s not a common cancer, some oncologists don’t see many people with myeloma, Omel says.
The people in the support group “can be just as well-educated about their cancer as many general family physicians,” he said. “In fact, I would say that some of my members are more knowledgeable than many doctors about their cancers.”
Omel would like to see more people with myeloma attend the support group.
Knowledge is power, he says.
No matter what illness people have — myeloma or otherwise — the more you know about it, the better decisions you’re going to make and “the better discussions you’re going to have with your doctor,” Omel says.