A skeptic by nature, Aaron Cohn nevertheless took life’s ups and downs in stride. But getting diagnosed with stomach cancer on August 2, 2005 was different, he says.
“I had been used to feeling self-confident,” Cohn says. “If the constellations and stars stayed in the right place, I never had a problem I couldn’t deal with. But this was not something I could do myself. I knew it right away. This was different, I was scared and I had no past to relate to. I had to find new skills and I knew I couldn’t do it on my own. Then Pete came along.”
Pete Daly, a patient advocate at the Center for Patient Partnerships and a cancer survivor himself, approached Cohn after learning of Cohn’s diagnosis. Daly knew Cohn because their daughters were friends.
At their first meeting, Daly and Cohn talked about ways Cohn could remain hopeful. Cohn, the married father of two teenagers, said having children made his illness all the more devastating.
“Kids are vulnerable,” he explains. “It would be a lot easier with no children,” says Cohn, before adding, “It would also be a lot harder.” Daly likened dealing with cancer to entering a jungle, especially as it relates to family dynamics.
“When you enter the jungle of a cancer diagnosis you enter as a whole family,” Daly says.
“But the perception and fears are going to be different.” Cohn said Daly and student patient advocate Andrew helped him find the specialist he needs at the local comprehensive cancer center.
“You have to get the right doctor,” Cohn says. “You have to feel confident the right person is taking care of you. That’s monumental.”
Soon after being diagnosed, when Cohn came out of surgery, which was not successful, a doctor told him he had 60 days to live.
While that turned out not to be true, it was a learning moment for Cohn.
“Pete and Andrew got me not to talk about statistics — I didn’t do a good job at that – and just not listen to people.”
Advocates from the center helped Cohn research anti-nausea antidotes for treating side effects from chemotherapy and cut through the red tape so that Cohn could retire early at a higher level of pay due to his disability.
“It didn’t take long for clarity to evolve,” he says. “I wouldn’t be where I am without Pete and the Center.”
Cohn, himself a teacher, offered advice to students new to patient advocacy, “Don’t be to quick to feel good about it. Let the process be the reward and allow time to really listen to a patient. You can be instrumental when you approach it from a more serious place.” For patients he added, “It’s too easy going on trying to be one’s old self and it’s hard to reinvent. Patients need a lot of support.”
Aaron Cohn died of stomach cancer in October 2007.
Interview from June 6, 2006.