Ann Marie Shepherd, a Strong Survivor from Makanda, exercises under the guidance of Phil Anton, associate professor and exercise science program/Strong Survivors director, and Madeline “Madie” Rushing, a master’s student in exercise science from Carbondale who has been assisting Shepherd since June. (Photo by Russell Bailey)
May 11, 2022
SIU’s fitness program for cancer survivors and caregivers transforms lives, gives priceless experience in new facility
CARBONDALE, Ill. — Cancer – it’s a word that strikes fear and changes lives in an instant. It happened to the family of Phil Anton, associate professor and director of the exercise science program at Southern Illinois University Carbondale, when his cousin and childhood best friend, Julie Honerkamp, was diagnosed at the age of 13.
A year older than his cousin, he watched as from ages 13-18 Julie struggled valiantly against osteogenic sarcoma which began in her thigh bone and later spread to her lungs, kidneys and brain, resulting in her death in 1990. He was determined to honor her life and memory in a special way. Strong Survivors, one of only two programs of its kind in the country, launched in September 2005 as a joint effort involving Anton, SIU, Southern Illinois Healthcare and John A. Logan College. The program provided exercise training space a couple days each week and included nutrition and fitness components.
Today, nearly 1,000 cancer survivors and their families from all over Southern Illinois, along with hundreds of SIU students, are the beneficiaries. And now, Strong Survivors is operating in a new, dedicated facility bearing Honerkamp’s name.
Anton said he’s thrilled with Strong Survivors’ positive impact on the lives of cancer survivors, caregivers and students, but he was determined to take his vision one step further. He wanted a special space just for the program.
Since 2009, the program had been in Davies Hall, Room 132, an old locker room that had been converted into shared lab space. In 2018, Rooms 123/124 in Davies Hall opened up, and plans were made to create an exercise lab specifically dedicated to the program, a truly private place for cancer survivors and caregivers to exercise with SIU student staff members.
Anton also had another vision, a dream of naming the facility in his cousin’s honor. But funds were needed to remodel and equip the space and secure naming permission. Generous donors, including Julie’s family, program participants, students and their families, community members and others, contributed about $40,000 to make the Julie A. Honerkamp Strong Survivors Cancer Rehabilitation Laboratory a reality.
A rare program is launched
In the early 2000s, Anton knew what he wanted to do after learning about an acclaimed cancer survivor program in northern Colorado. Anton had recently joined the SIU faculty, and he and a graduate student began working on a similar program in Carbondale while collecting data for his doctoral dissertation. Gradually, additional SIU students, particularly from the exercise science program, were trained and began assisting.
By 2009, survivors were coming from all over the region as Strong Survivors grew and flourished. The hours expanded, from 7 a.m. to 7 p.m., and so did the timeline. Instead of a 12-week cancer rehabilitation program, people could stay in the program indefinitely.
“We work with people who were diagnosed last week or 30 years ago,” Anton said. “We will work with them at any time in their cancer experience.”
Another change that year was welcoming caregivers – whether family members or friends – to the program.
“Often, the caregivers are in worse physical condition than the survivors when they arrive because they focus so much on the survivor and so much falls on them it translates into psychological and physical stress,” Anton said. “They are often the forgotten soldiers in the cancer battle.”
One thing has never changed though, Anton said. The services are all provided at no cost to participants.
The goal is helping community members and providing a good learning experience for SIU students.
Ann Marie Shepherd, of Makanda, was diagnosed with breast cancer in 2014, resulting in a lumpectomy followed by 36 radiation treatments and two years of hormone-blocking medication before being declared cancer-free in February 2020.
She battled weight gain, equilibrium issues and knee pain, causing her to fear falling. She began working with SIU student Madeline “Madie” Rushing each Wednesday last June and said she has been “thoroughly blessed to participate in Strong Survivors. My balance is improved, my endurance is greater and I can walk longer distances.”
In addition to in-person workouts, Rushing, a master’s student in exercise science from Carbondale, provides home workouts for Shepherd and sends text messages after each session to Shepherd to report on her progress, note the high points of her workouts and encourage her. Shepherd shares those texts with her children and family members who in turn provide additional encouragement and support. She said working with the students “keeps me encouraged that I can overcome all of the setbacks.”
Rushing began working in the program last summer.
“It’s been great,” Rushing said. “I look forward to meeting with Ann Marie every week. It’s rewarding work. Her main goal when we started was to be able to walk from her car to her seat at a Saluki game without a cane, and she did it! She’s very hard-working and a real character. I love meeting with her and helping her reach her goals.”
Rushing said the practical experience has already proven beneficial career-wise. She is convinced it helped her secure a position as an exercise specialist in cardiac pulmonary rehabilitation at St. Joseph’s Hospital in Murphysboro recently.
Kathy Morgan, of rural Carbondale, first came to Strong Survivors in the summer of 2006. A breast cancer survivor, as was her sister, she’s been part of the program since 2009.
“I feel better, and I can tell I’m more fit,” Morgan said. She was sad to miss for a time due to the pandemic and noted that a knee problem is already improving since her return. She said the nutrition instruction is very valuable as well.
“I would recommend this program to anyone who has cancer,” she said, pointing out that the students are very supportive and that participants and students form close friendships.
Strong Survivors was one of the things that drew Cailey Clark, a senior exercise science major from Pittsburg, Illinois, to SIU. Her childhood best friend’s older brother, who was also her brother’s best friend, had leukemia and seeing him fight and how others helped, drew Clark to a career in a health-related field where she could make a difference.
“I heard about Strong Survivors when I was taking a campus tour, and it made me want to come to SIU,” she said. “Then I met Dr. Anton and some of the other faculty and it solidified my decision.”
She plans to become a clinical exercise physiologist, working in a cardiopulmonary lab. She said working in Strong Survivors since fall 2020 has given her absolutely invaluable experience, convinced her of her career plans and enabled her to form great professional connections through Anton, who has been a wonderful mentor.
She said she has enjoyed another, somewhat unexpected benefit as well. She’s come to think of Kathy Morgan as another member of her family.
“She’s gotten to know me so well that when she’s out shopping at yard sales, she’ll text me and say she’s found a book that she thinks I’ll like and she’ll pick it up for me,” Clark said with a smile.
Physical and emotional benefits
Some Strong Survivors have fought cancer multiple times. Fran Benson, of Carbondale, first heard that dreaded word in 1979 then had a worse recurrence in 2002. Four years later, she discovered Strong Survivors and today says, “I give the program all the credit for how good I look and feel.” She had another relapse in 2011, and Anton was the first person she called. She said at one point in her journey, she was so weak, she couldn’t even walk into the building due to her treatments. Her husband would help her come into the building and get her to her sessions.
“I felt like I couldn’t do anything, but I could. It’s like an exercise snack. My energy level started at zero but improved greatly and I’ve been doing it ever since,” she said proudly.
Benson notes that she and her trainer, Kiley Carter, a senior exercise science major from Benton, don’t have an agenda as they go through the workout together, but they enjoy chatting and have become quite close.
“We just talk.” Benson chuckled. “She probably doesn’t have too many 85-year-old friends.”
Carter aspires to be an occupational therapist, enjoys helping people and appreciates the valuable experience she’s getting, but moreover, she values the unique friendship with someone more than 60 years her senior.
“I love it,” Carter said. “I get to learn a lot about what she and the other people have been through. It helps me so much to understand other people.”
Life-changing in many ways
Since its inception, Strong Survivors has provided services to nearly 1,000 survivors and caregivers, Anton said. About 220 students have volunteered their time and energy to serve as trainers for the program. Each is specially trained to do so.
Kathy Renfro, a cancer survivor from Carbondale, has been part of the program since 2019 and said it has been a “game-changer for me. It has given me confidence in my body and a better understanding of the connection between my body and my brain.”
While always active and involved in activities like pickleball, she said Strong Survivors has been transformative for her. She’s been working with Sidney Sikes, a senior exercise science major and Saluki softball player from Dallas, Texas. Sikes plans to go on to obtain her doctorate in physical therapy and said her work with the program has positioned her well for graduate school and beyond.
Brandon Caldwell, a senior exercise science major from Murphysboro, said he looks forward to his time in the lab each week, noting that it gives him a great opportunity to apply lessons he’s learned in the classroom.
“I’m amazed at the participants too, how mentally and physically strong they are, especially after all they’ve been through,” Caldwell said as he assisted Joan Temple of Carbondale with her exercise regimen.
Temple had cancer several years ago, and she and her caregiver husband, Jim, both participate. She said it’s fun and she thinks she’s in better shape thanks to her workouts. She also enjoys staying in touch with the student staff members.
Jim said he appreciates that it “makes her feel better about herself and that it reduces stress levels. The better you feel about yourself, the more it reduces pain and encourages general feelings of wellness. It also gives you something to look forward to, and for many of the people I’ve talked to here, that’s important.”
As a caregiver, he said “one of the worse feelings I have ever had in my life is not being able to do something for someone I love. I was a policeman for over 30 years. I’m used to being able to fix things. I couldn’t fix her cancer but to be able to come here with her is something I can do to take an active role in her recovery. It’s something we can share. It’s good for me too. I’m fairly active, gardening, cutting wood, but this helps me.”
Lab useful for research
The facility is also important for research, Anton said. Data collected there on a daily basis is analyzed by students and faculty. Physical, psychological and qualitative assessments are made, and papers have been published in a wide variety of journals, including the Journal of the American Geriatric Society and Supportive Care in Cancer.
Anton said the research includes:
- Quantitative studies focusing on the performance of daily living tasks and the improvements in lift-and-carry tasks among cancer survivors participating in prescribed exercise.
- Qualitative studies that focus on the participants’ perceptions of the program benefits, their individual quality of life, and factors such as fatigue, social support and enjoyment of exercise
- Perceptions cancer caregivers have of an exercise and nutrition program.