By Lori Berkey, Contributing Writer
Shrewsbury – When Grafton resident Dick Dion goes to Dana Farber Cancer Institute each week for treatment, gets weighed and is asked to rate his pain level from 1-10, he responds with a small grin, “I don’t accept pain.”
A positive attitude is something he and Denis Herlihy of Holden bring together to members of the Central Massachusetts Multiple Myeloma Support Group they co-facilitate monthly at Southgate in Shrewsbury.
The group was founded in 2012 by Rev. John “Jack” Kelley, a 17-year survivor of multiple myeloma who reached out to others with the disease offering solace and information. Dion, a self-proclaimed “loner” and outdoorsman, wasn’t the type to go to support groups, but he went solely because Father Jack asked. Herlihy, who also had the condition, was rounded up to attend.
In the last months of Rev. Kelley’s life, it became progressively harder for the clergyman to get to meetings. Herlihy volunteered to email people, and Dion offered to maintain the membership list.
When Rev. Kelley passed away in early 2014, officials at Southgate (where Father Jack had been a resident) asked the duo to continue the group at the facility in his honor. Dion and Herlihy have been leading it since.
“I’m happy that we can at least hopefully be a resource for people who have myeloma about information on treatment and provide a way for them to get real information from people who are experiencing the disease,” Herlihy said.
“I think part of the mission is to stay as up-to-date as we possibly can with developments in myeloma treatment and to keep as many myeloma patients informed as we can. There are so any organizations – like the Leukemia and Lymphoma Society [LLS] and the International Myeloma Foundation [IMF] – out there that have information available,” he said.
Both Herlihy and Dion bring stacks of pamphlets to the meetings for participants to take.
“It is absolutely shocking and rewarding when other patients with multiple myeloma come in and ask a question and we’ve got the answer and can guide them what to ask and where to go,” Dion said.
When Dion’s health care provider recommended an over-the-counter treatment for his long-standing painful neuropathy, he was amazed at the relief and couldn’t wait to pass on the information. Likewise, he said he has benefited himself from input from others.
In 2009, Dion began clinical trial of a new medication prescribed with an accompanying commonly-used steroid. he said the steroid caused his blood sugar to “go bananas” and he became diabetic. One night at the group, someone on the same clinical trial relayed he wasn’t taking the steroid with it. Dion then talked with his doctor who stopped his steroid. It’s been over a year and his blood sugar level remains out of the worry zone.
People attending the group range from those newly diagnosed to those going through treatment to those coping with side effects, as well as caregivers, family members and friends of those who are ill.
Dion and Herlihy said Southgate has been very generous, opening their auditorium for the influx of attendees who come when expert speakers appear. The co-leaders also credit the LLS and the IMF for their backing. The LLS has provided funding and marketing for speakers and programs and the IMF is working with Herlihy to set up a website for the group that will be linked to their page.
Other big supporters of the group, Dion said, are the caregivers.
“They play a big part and we want to encourage them to attend the group,” he said.
For information about the group, contact Dion at 508-839-6816 or Herlihy at 508-829-0986.