Care Team Surprised by Portrayal in One-Woman Show

Ingrid Hein

September 06, 2019

Jeremy Heinerich, PA-C, from New York-Presbyterian Hospital and Weill Cornell Medical Center in New York City, bought tickets to see a one-woman show and, when the curtain went up, he was drawn in by the actor's "incredible" true story.

With humor and raw honesty, New York actress Paige Barr recounted the 5-year journey through cancer with her husband Daniel, a trajectory filled with moments of laughter, terror, triumph, heroism, love, anguish, and pain.

Barr's performance captures the absurdity of life as death comes knocking.

"So they cure Daniel of leukemia; now there's something else. There are liver tumors, a lot of them. And the new treatment — it's not working. It turns out Daniel has won the rare cancer lottery again," she says. "He couldn't just win the regular lottery."

Barr tells the audience about desperation at times in the hospital. "Daniel has been trying to have a bowel movement for so long that he cannot feel his legs." They haven't been giving him laxatives, and narcotics make him constipated, so he won't take more she explains. "This is life-threatening."

"The last pain med has clearly worn off because he is freaking out and everyone is panicking," she recalls.

"Then I get resourceful." She explains how she convinces a nurse to coerce Daniel into taking pain medications.

Another nurse pulls her aside and says, "I want you to know I've been doing this for 24 years and you're doing great."

"This is what great looks like?" Barr asks.

"Yeah, I'm afraid so, luv," the nurse replies.

Watching Barr describe her experiences made me laugh and cry, said Heinerich. "It was so good."

He chuckled at how familiar the impressions felt. It was like "I knew who she was talking about," he quipped to Medscape Medical News.

And then he recognized her.

Daniel's wife; Daniel Craft had been a patient at his center years earlier.

Paige Barr is an actor, sketch performer, writer, and casting director who lives in New York City (Courtesy of Paige Barr)

Barr says when they were told by hospital staff, "Let me look at the numbers when the tests come back and we can deal with it then. I can't tell you to cancel your next 3 months of appointments," they felt reassured. But when someone said, "This is a very tenuous time," or "This is what we're afraid of," or "This could go so badly," it didn't add anything aside from terror.

Daniel did not always want to know the details of his treatments, so when he learned how blood stem cell transplants work on the day of his therapy, he was relieved.

He had imagined that surgeons would have to operate on every single bone in his body to remove the cancer. Reality, in comparison, did not scare him as much as the 400-hour surgery he had conjured up in his mind.

But for Barr, the treatment was "the most terrifying thing I've heard in my life."

The hardest but best advice they received was when she and Daniel were told to "go prepare yourselves." The message was: "We are very hopeful but we simply don't know," Barr told Medscape Medical News. They were told to "go to the bank and take care of your stuff so you don't worry," and to "be prepared."

"When they say, 'we're so hopeful,' it's flowery language, unlike the stark reality and the truth that "the numbers are not good," she added.

Truth Is Stranger Than Fiction

Paige Barr and cancer patient Daniel Craft enjoying time together (Courtesy of Paige Barr) 

Daniel was assigned to a hospice in the Bronx, she explains from the stage. "My atheist husband is put into a room with a life-sized crucifix. They offer me a nun to try to help take it out. Then, a rabbi the size of a tall child shows up on his tippy toes grasping for the Jesus."

Barr humorously explains her search for hotels near the hospice, where the extended family could stay when they came to say their good-byes. She reads the best rated reviews for nearby hotels. "Takes cash. Friendly. Discreet."

"I almost book my entire family into a sex hotel," she jokes.

Barr tells stories about watching Daniel turn yellow and suffer in pain while interacting with friends.

She embarked on a social media campaign so that Daniel could see Star Wars: The Force Awakens, because they anticipated he would not make it to the film's release date.

Thanks to the film's director, J.J. Abrams, Daniel got a private screening of the film in his home over the holidays in December 2015. He died 5 days later.

You can't be sad when you play the ukulele.

Because he donated his body to science, Barr called the man who was supposed to collect Daniel's body. "But you have to wait until his mom gets here," she recalls telling him.

"You have to refrigerate him — put him on ice or something," she told him, still trying to take care of her husband.

"I'm a licensed undertaker. I assure you we cannot put him on ice," she is told. Barr then found out there was a morgue in the basement of the hospice. "I have managed to offend an undertaker," she tells the audience.

Her stories of mourning with the help of a ukulele — "you can't be sad when you play the ukulele" — and her attempts at dating exemplify her valiant efforts at recovery, and how ludicrous it all seemed.

Death, Dating and I Do

Recounting her story on stage in Death, Dating and I Do can be hard.

Even 6 years after Daniel's death, "there are some moments that still really just get me," Barr acknowledged.

"But it's really great when I can help someone. I don't think I could have written the show if I wasn't significantly into my healing process," she said. "I do see projects written by people a year after their husband passes away, but I could barely tie my shoes after a year. Everyone's journey is different."

Heinerich, President of the Association of Physician Assistants in Oncology, reached out to Barr after the show and suggested she deliver the keynote address at his group's annual meeting in Boston.

"I told the conference committee: This is good. We forget how much a caregiver goes through," he told Medscape Medical News.

Physician assistants are on the frontlines of care, but when covering eight to 10 patients in a day, "you don't have time to talk about this. You don't realize the caregiver has issues too. They might have three kid, and have someone else taking care of those kids while they take care of loved ones in the hospital," Heinerich said.

"We have to put that into perspective so we can give better care," he added.

So he asked Barr to perform her 50-minute act.

Barr admitted that she might have rewritten some of the show had it been created with a physician assistant conference in mind. However, in previous performances, she has connected with the audience. They are able to laugh and it helps them get through the pain of losing sick family members." People have come to me after the show to thank me," she explained.

Sharing Your Story Makes it "Suck Less"

It is a good idea for the hospital staff to understand that checking in with the caregiver makes a difference. "I didn't have cancer but I suffered severe stress during that period," she told Medscape Medical News.

Healthcare professionals do sometimes ask how you're doing, she added, but "unless I come down with something or don't look too good, why would they check my blood pressure?"

In reality, though, "I feel like I'm falling apart," she said.

Barr said she now passes on a message someone gave to her: "One day you will tell the story of how you overcame what you went through, and it will become part of someone else's survival guide."

Today, Barr runs a widow support group for other women with similar experiences. "My girlfriend told me: 'You have a lot of talent; you can make people laugh. You have a story that can help people.' I knew she was right," Barr said.

"I can't bring my husband back but I can help people. The widow's club is the best worst club ever," she added. "I always say: It's going to suck, but together it's going to suck less."

Association of Physician Assistants in Oncology (APAO) 2019 Annual Symposium. Presented August 30, 2019.

Follow Medscape on Facebook, Twitter, Instagram, and YouTube

 

Comments

3090D553-9492-4563-8681-AD288FA52ACE
Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.
Post as:

processing....