This Is My Life
Mary Greeley cancer patients share their stories and help caregivers get to know them better.
By Stephanie Marsau
“My parents met in a church while he was getting ready to head to WWII. He promised that he would marry her if he made it through the war. He came home and married her and had three kids, my two older brothers and myself. We lived in Fort Dodge. My parents lived to ages 93 and 94!”
So begins Diane Daniels’ life story.
She’s a patient on Mary Greeley’s oncology unit, being treated for a rare form of leukemia. Diane could be in the hospital for weeks, which is not unusual for cancer patients. Mary Greeley staff will obviously get to know Diane during her stay. Now, however, a new patient experience program at Mary Greeley will help them know her better than ever.
The program is called Life Stories.
In the summer of 2019, McFarland Clinic nephrologist Dr. Jacob Alexander heard National Public Radio story about a program that had been developed at a veteran’s hospital in Wisconsin. The program, called My Life, My Story, involved helping staff get to know patients beyond their health histories by gathering personal details about their lives.
The story resonated with Alexander, who values learning about who his patients are as people.
“Electronic medical records have taken away a little bit of that patient/doctor interaction,” said Alexander. “We have so many medical facts at our fingertips in the patient chart that it can sometimes be hard to cut through the clutter and get to know the patient.”
Alexander points out that knowing more about a patient’s life helps providers understand their values, which can lend itself to better treatment options for that patient.
Alexander’s enthusiasm for what he heard on the radio made its way to Sarah Heikens, director of oncology service at Mary Greeley. She loved the idea, feeling it made sense to pilot the program on Mary Greeley’s oncology unit. Cancer patients are generally either frequently receiving treatment at the hospital or staying in the hospital for significant periods of time.
Enter Allison Greenwald. A former writing instructor at Iowa State and DMACC, Greenwald had been volunteering at the Israel Family Hospice House and occasionally writing life stories for hospice patients. She jumped at the opportunity to do it on a more formal basis with Mary Greeley’s cancer patients.
Life Stories was launched in fall of 2019 but was then suspended due to COVD-19. It re-launched in March 2021.
The process is simple. Heikens and Trent Muhlenburg, oncology clinical supervisor, approach patients on the unit and ask if they’d like to tell their life story. Muhlenburg, like Heikens, is a firm believer in the positive impact Life Stories has on patients.
“This project helps patients realize they are more than just a diagnosis,” said Muhlenburg. “It helps our staff get to know our patients on a more personal level, and when a patient agrees to an interview, their face lights up – because they realize our staff want to know their story.”
Diane’s Wonderful Life
Once a patient has been identified, a visit from Greenwald is arranged.
She typically chats with a patient for 45 minutes to an hour. She goes home and writes the patient’s “life story.” She makes sure the story is long enough to include as much detail as possible, while a manageable read for busy caregivers. The stories are written in first person, so it sounds like the patient is speaking. She then goes back to see the patient one more time and has them read through the story to check it for accuracy.
Diane’s life story is filled with heartache, joy and laughter. It chronicles her becoming a mother as a teenager, coping with her first husband’s drug problems, and later being introduced to a man named Pat by her oldest daughter. “I knew the instant I met Pat that he was the one. He has done more for my kids than their biological father ever did, and he did so much for my mom that she called him “son.” Diane and Pat have been together for more than 30 years.
She talks about being a bus driver in Gowrie for 23 years and how “to this day, some of the kids I drove will see me and either give me a hug or flip me the bird.”
“I opted to tell my story to Allison because I wanted the staff to get to know me better,” she offered. “I know I am going to be in the hospital for a while, so helping them get to know me will help them take better care of me.”
“A lot of people are very hesitant to write their own story, but not necessarily to tell it to someone else,” said Greenwald.
Everyone has a unique story, Greenwald said, but most patients doubt that. The story is in the details, and Greenwald’s job is to gather those details through her conversation with a patient.
“Some stories are never written,” said Greenwald. “But everyone’s story is worthy of being told."
She remembers all of the patients she’s met. The man whose hobby was being a clown … the woman who grew a palm tree from seeds … the 70-year-old woman who fostered over 40 children with her husband's help … the 30-year-old dad of three who is determined to beat his disease and get back to his family.
“Stories are so important,” Greenwald said. “It’s very valuable to invite people to reflect on their lives, and it can be therapeutic for both the patient and their caregivers.”
Many people never have a chance tell their story and, sadly, some oncology patients have a limited amount of time to share theirs. This makes the opportunity Life Stories provides so valuable and powerful.
In her life story, Diane also talks about becoming an ordained minister so she could officiate her youngest daughter’s wedding. “I was also mother-of-the-bride, wedding planner, DJ, and bartender. Too much! I also officiated for my grandson’s wedding last September. I did my mother’s funeral, which was hard. Because of COVID, it was just 6-8 people. I am glad my mom is not seeing me deal with sickness… But I want to beat this and live for my husband, kids, grandkids and great-grandkids. I want to continue to make my parents up in heaven proud of me.”