Mere hours after a chemotherapy treatment, Dana Crumpton got in his car, drove from his home in Madison to Columbus, Ohio, and woke up to testify before an Ohio State Senate committee.
He is on the Board of the Hypoparathyroidism Association, and the Ohio legislature was considering a bill to recognize an annual Hypoparathyroidism Awareness Day.
“I drove the 10 hours or so to Columbus, got in late, and had to be up by 8 a.m. to make this presentation,” Crumpton said. “I’ve never spoken in front of a Senate committee in my whole life. I was tired, but I did it. But that was how important it was for me to make sure this bill passed.”
After he returned, he mentioned his trip to Noelle LoConte, MD, his medical oncologist at the UW Carbone Cancer Center. She told him to keep her informed of his travel plans so his care team could adjust his treatment schedule. It was a good thing she did, because Crumpton is continuing to travel and to advocate on behalf of patients.
In 2014, Crumpton was diagnosed with colon cancer. A year and a half later, the cancer had recurred, this time spreading to his lungs and liver. This past January, he learned the cancer in his liver was inoperable. The outpatient palliative care team at UW Carbone joined his care team, and he is now on chemotherapy to reduce the tumors’ growth.
Crumpton is realistic about his diagnosis – “My family and I, we’re completing my bucket list right now,” he said – but he is also not letting him stop it from leaving a legacy for his family, and for the many colon cancer and hypoparathyroidism patients for whom he is still advocating. Crumpton is currently completing dignity therapy, a life review experience with Jean Ligocki, LCSW, CT, a social worker on his care team.
“Anyone who gets a cancer diagnosis begins looking at their life very differently than they had prior to the diagnosis, so dignity therapy is a way for them to explore and share with others the wisdom and the beauty of their life,” Ligocki said. “We, any trained facilitator, sit down with a patient and interview them – we talk about the impact of their life and who and what they have loved. It’s a very powerful experience.”
During the interview, the facilitator has a conversation with the patient, asking such questions as “What do you feel most proud of?” “When did you feel most alive?” or “What do you want your loved ones to remember about you?” The recorded conversation is typed up, read to the patient and edited. A final document is printed and uploaded to a USB drive for the patient.
Research on dignity therapy has found that, for example, around 70 percent of participants report it as increasing their sense of dignity and purpose. Ninety-five percent of family members believe it has been helpful to their loved one.
Crumpton says that when Jean approached him about dignity therapy, he of course said "yes," because reaching and educating people is so important to him.
“I’ve had about a dozen friends who are at risk because of family history, but they’ve always afraid to get checked. They kept putting it off, mainly because of what they might find,” Crumpton said. “But because of me being so positive and strong and talking about it, they finally went and got checked. And they’ve all been clear.”
Crumpton is currently editing his document, and he is busy traveling and educating. He is attending his first Colorectal Cancer Alliance conference in Houston this fall. There, he will be able to meet many of the people with whom he has connected online. He also views the conference as a place to work with the doctors as a patient advocate, emphasizing to them that the patients and their caregivers should be viewed as part of the care team.
In between all that, he and his husband, Ron, will travel – lots of travel. Checking off items on his bucket list, they will stay at historic hotels and take a cruise with their daughter. Crumpton said that when his doctors tell him nothing more can be done for his liver, he wants to hop in an RV with Ron, see Mount Rushmore for the first time, and continue on a road trip until he cannot any longer.
Patients completing dignity therapy choose whom they want their document to address, often a spouse, or their immediate family. For Crumpton, his is directed towards his husband and daughter – and to all patients facing a cancer diagnosis.
“Each cancer affects everyone differently. But I’m going to keep fighting,” Crumpton said. “If you don’t, cancer takes over you.”
About dignity therapy
If you are a patient interested in completing dignity therapy, please contact Jean Ligocki, Outpatient Palliative Care Social Worker, at firstname.lastname@example.org or (608) 263-8633, or Cassi Shumway, Outpatient Palliative Care Nurse Coordinator, at email@example.com or (608) 263-0342.