Jack Carr would be working out at Anytime Fitness and his shoulder would bug him. Repeatedly.
“What is this? Tendinitis? Bursitis?” he said to himself.
This was last August, when Carr, a singer, actor and play director, was acting in the Center Players’ Shakespeare in the Park.
The 67-year-old went to orthopedist Dr. Charley Gates in Cortland and the result was startling.
“The long story short, the X-ray on the shoulder revealed one nodule on the lung,” said the Cortland man, an adjunct professor at SUNY Cortland. The nodule was cancerous.
And it’s so nestled into the fabric of the lung, it is inoperable. It’s a stage IV cancer.
“I urge everyone to be mindful of their own body,” Carr said. “Always, always, always, always, always, always, always advocate for yourself and make those appointments, especially during COVID-19. Get into the doctor and do what the doctor says.”
Carr knows how to do that. He’s made healing an art form, with a strong support network, nutritious diet and intentional lifestyle.
“I have claimed a cure. I am healthy,” he said.
Respect the disease
Carr was also treated successfully for prostate cancer several years ago. He is respectful of the disease and is not taking any chances.
When a hospital nixed a full body scan to test for cancer — a procedure only if doctors saw a problem — he sought help elsewhere.
“I am on my fifth oncologist now,” he said.
Carr keeps up on blood work and tests. His May 5 scan found no cancer growth. He’s a patient at Hematology and Oncology of Central New York in East Syracuse.
He takes a pill daily to keep the cancer in check, which costs over $16,000 a month. Yes, he has insurance, he said.
“Think about people who don’t,” he said.
No doctor has said Carr has a certain amount of time to live. “Nooooo!” Carr said.
“This medicine seems to be doing well. This has few side affects. This maybe good for 20 years,” he said the doctor told him.
To which Carr’s brother, Jerry, says:
“It looks like we’ve handled this nodule. Can we stop feeling sorry for you?”
How to self advocate
Carr says to stick with a doctor who is pulling for you and who you can relate to, a physician who moves forward in treatment for his or her patient.
“Realize you have a voice,” said
Monica Vakiner, director of Client Services at the Cancer Resource Center of the Finger Lakes. “You are part of the team,” she said.
“You need to ask questions. If you don’t get the answers you want, get a second opinion.”
“If you feel they are not listening, speak up and make sure your voice is being heard.”
The CRC is based in Ithaca but serves people in Cortland County. It offers support, information and tools for people with cancer.
Sometimes people don’t want to hurt their doctor’s feelings by getting another opinion. Doctors should welcome it, she said.
“Nobody can be an expert on everything,” she said.
Carr is careful with his diet, working with Amy Carlson of Good Guts in the Marketplace Mall in Cortland.
He goes to Integrative Medicine in Chenango and practices meditation and Reiki. He’s looking into yoga. Church is very important and he attends services at Grace and Holy Spirit twice a week and Homer Congregational once a week.
His network of friends is vast.
“For me, friends have been helpers,” he said.
Martha Phillips of Cortland, a retired pastor, is one of those friends.
Her husband, Daniel, pastor at Caroline Valley Community Church in Brooktondale, was diagnosed with cancer. He, like Carr, had a problem with another part of the body and discovered cancer. But the medicine that might have helped was awful for its side effect. He went without.
He died two months later on Jan. 21.
Phillips had started attending Grace and Holy Spirit Church after retiring as a pastor herself.
When a group of church members came to her husband’s funeral, she was impressed. Now she is part of a support group in the church.
A good attitude helps
Vakiner said a positive attitude can make treatment less daunting. “I am going to look for one positive every day,” she said.
“You don’t have to be happy all the time,” Vakiner added. “You need to find some joy in your life. There were days in the shower, I didn’t know if there was more water coming from my eyes or the showerhead.”
She had her good cry. Then she’d look for a positive, Vakiner said.
“I think attitude has such a huge part of it. For me, healing is to help other people,” Carr said.
“Refer a doctor, give a tip that might work for them. I am up for it.”
“The big thing is talking to others,” Vakiner said. “By connecting with other cancer patients, they know they are not alone. You can get a lot of support from somebody who has gone through it.”
And CRC support groups for people with cancer are operating on Zoom during the COVID-19 pandemic, she said.
Zest for life
Carr spices up life. He has positive mantras. One of his favorite T-shirts: “I’m a freakin’ ray of sunshine.”
He wears lowrider Converse ruby-colored sneakers — a gift from a friend — that remind him of Dorothy’s Wizard of Oz ruby slippers. He dons a Relay for Life survivor T-shirt to doctor appointments.
In February, Carr had a celebration of life with loved ones. He plans to do it every February.
“One way I heal is planning for the future. I’m working on a script with Matthew B. Steele,” he said of the actor who lives in Cortland. “We’re on script six. We’ll probably be on the tenth before it will be published.”
He’s also secured the rights and the script for “It’s a Wonderful Life,” which he hopes to bring to Cortland around the holiday.
He, Steele and Tammie Whitson of Marathon have formed Window Sills Productions to stage shows.
“For me, it’s going to sound cuckoo, but cancer gave me a huge gift,” Carr said. “It made me sit down and be aware of what I do. Be intentional. We are only here for a brief time … To be thoughtful of what I am doing.”