From adenocarcinoma to advocacy, the Talleys show together is stronger
“I didn’t even realize I had stopped breathing,” Amie-Anne Talley said. “My ears were burning and my heart felt like it was going to pound out of my chest. What were we going to do? I felt like my world was falling apart.”
Amie-Anne’s husband, Bill, had just given her the results of his colonoscopy. There was a mass, and it was almost completely blocking his bowel. All signs pointed to cancer. Nobody wants to hear this news, but this felt like an incomprehensible blow. They are parents to three young children, and, at the time, Bill was just 36 years old.
Even though these moments were heart wrenching and terrifying, Amie-Anne and Bill eloquently recounted them in January 2019 to a crowd of more than 100 people. Joined by Khalid Matin, M.D., medical director of community oncology and clinical research affiliations and member of the Developmental Therapeutics research program at VCU Massey Cancer Center, they shared their story at “Appetizers & Advocacy,” an event hosted by the Massey Alliance.
LISTENING TO HIS GUT
During the year prior to receiving his life-changing results, Bill had been experiencing gastrointestinal changes, the kind, he noted, that you don’t want to hear about while enjoying appetizers. Even in the absence of an audience and appetizers, however, he never felt particularly inclined to talk about his symptoms despite the fact that his own body was loudly talking to him, telling him over and over that something wasn’t quite right. Eventually, after hearing his gut’s cries for help herself, Amie-Anne convinced him that his “persistent belching” needed to stop. Surely a diagnosis and treatment would provide them both some relief.
Bill finally gave her the green light to step in, and Amie-Anne promptly set up an appointment with Kasiah Banks, a family nurse practitioner with VCU Health’s gastroenterology clinic. She also gave him strict instructions to share every detail of what he’d been experiencing. Amie-Anne, a nurse at VCU Health, wanted to be sure they got some answers and knew that honesty would be key in achieving that.
After hearing about his GI symptoms, Banks ordered a colonoscopy, and, as luck would have it, Bill was able to secure an appointment just a couple of days later. He soon found himself under twilight anesthesia with his procedure underway. Sedated but awake, Bill could hear everything, including when the doctor said that he was pretty sure he could see something malignant.
A whirlwind of scans and meetings began with Brian Kaplan, M.D., surgical oncologist and member of Massey’s Developmental Therapeutics research program. Within a matter of days, their fears were confirmed. Bill had stage four colon cancer. It had spread to his liver, and he urgently needed surgery and chemotherapy. “Your husband is such a nice man,” the gastroenterologist said to Amie-Anne as he prepared to deliver the news. “I am so sorry this is happening to you.”
“For anybody, that’s a lot to take in over a two-week timeframe,” Bill said. “We’re both working professionals. We’ve got three kids that are active and engaged in things. This really came out of the blue.”
Despite reeling from the news, Bill was determined to maintain some sense of normalcy and minimize disruptions for his family. “As far as dealing with it, one of the big things is attitude,” he said. “You deal with it. You get to the other side, and you move on. As shocking as this was to me, I was never scared. I knew this was a speed bump in the road. We have the best people involved in this.”
GETTING BY WITH A LITTLE HELP FROM THEIR FRIENDS
Despite their positive outlook, telling their family about Bill’s diagnosis was incredibly difficult. “My heart broke for my children,” Amie-Anne said. “But as the days passed and the weeks and the months, the kids were resilient. I think you come to recognize the importance of family and how much it means when something smacks you in the face. You realize how precious your loved ones are and how unpredictable life is. Our circle of family became our lifeline.”
Little did they know just how big that circle would become. Between their relatives, coworkers, church, neighbors, friends and clinical care teams, an emotionally and physically challenging time also became one marked by a remarkable outpouring of compassion and love.
Amie-Anne started a group text message so those closest to Bill had an easy way to stay informed about his progress. To show support for Bill, the Keystone Insurers Group, which is a partner of Bill’s employer, started fundraising for cancer research at Massey, and one of Bill’s fellow partners, Jason Priest, even helped to increase the funds raised by offering to shave his long head of hair. The result of these efforts was a $10,500 donation to Massey. VCU Health allowed Amie-Anne to work on a flexible schedule so that she could prioritize her new role as a caregiver, and her colleagues were always there to pick her back up on the days when she simply needed to sit down and cry.
“We already knew what a wonderful place VCU Health was just from her experience working there,” Bill explained, “but then coming to meet and interact with the folks at Massey—that was a new family. Everyone, from the receptionist to the sweet lady who takes your height and weight—even though you don’t want to know what your weight is—are awesome. Cancer is not the most pleasant thing, but everyone there was always in a great mood and had a smile on their face.”
The Talleys gave special credit to Joelle Kang, their nurse navigator who helped them make appointments, complete their paperwork, keep them updated on progress and generally relieve much of the stress and fear from their lives. Kang also recommended that Matin be Bill’s medical oncologist, knowing they would be a great fit.
Throughout Bill’s treatment, their ever-expanding circle of family ensured their refrigerator was always stocked, fresh flowers were delivered regularly to brighten their moods, they were supported at their respective workplaces and socks were available in abundance. Yes, socks.
SOCKING IT TO CANCER
After hearing about his diagnosis, Bill’s Aunt Betsy sent an email to their family encouraging everyone to send him goofy socks so that he could wear them to his chemo appointments. Bill’s family responded enthusiastically, and more than 10 pairs soon arrived at his house.
“I’m not one of those people who posts everything on Facebook, so I thought, I’m going to take a picture of my socks every time I’m getting a treatment and post that,” Bill explained. He would also tag the person who gave him the socks as a way to show his appreciation.
Soon, he started receiving messages and calls asking him about his cryptic sock photos. Bill would fill them in on his health challenges during those conversations, and as more people learned about his diagnosis, more and more socks arrived at his doorstep. “It got to the point where I had more socks than treatments,” he said. “I haven’t worn a pair of plain socks in more than eight months.”
Amie-Anne noted that the socks gave them something to look forward to each day, and they hope to share that positivity with others. “Appetizers and Advocacy” attendees were encouraged to bring a new pair of eccentric socks to the event, and, with a record-breaking crowd, the Massey Alliance was able to collect more than 100 pairs to distribute to other Massey patients throughout the state.
LOOKING AHEAD AND GIVING BACK
After undergoing multiple surgeries, receiving chemotherapy and wearing more unique pairs of socks than he can count, Bill was finally declared in remission after about a year of treatments. While many patients would be sprinting away from Massey as fast as possible, hoping to never return, Bill has remained a familiar face around the MCV Campus. Feeling humbled and blessed, he is now working to raise cancer awareness and inspire philanthropic support for cancer research.
“You need to give back,” he explained. “It’s your duty to do that. I knew that I wanted to give back, especially after I saw all the wonderful things going on there. That’s why giving to Massey—unrestricted giving, where those dollars can be directed where they’re most needed to help further cancer research and help other people—is so important. I’m honored to be a small part of that. With my journey, there’s still some to be determined, but with the good Lord’s help and with Dr. Matin and everyone else’s help, it’s going to be a positive one. There’s no other alternative as far as I’m concerned.”
Bill’s cancer has a 50 percent chance of recurring, so he will continue to visit Massey for regular scans in addition to his visits as a donor and advocate. And Kang was right that Matin and Bill would hit it off. In fact, their partnership has transcended the hospital walls, and they are now fundraising together through the Massey Challenge as part of team “Cancer my butt!”
“Cancer care is something that brings people together,” Matin said. “You are hard pressed to find people cancer hasn’t touched. It truly is one of the challenges of our time. The only way we can do better and defeat it is if we do it as a community, as a team, together.”
Matin finds plenty of motivation to fundraise from the patients he treats every day. Seeing patients like Bill handle cancer diagnoses with courage and positive outlooks never ceases to impress him. While he kept his part of “Appetizers & Advocacy” brief, he made sure to take a moment to address the cancer patients and survivors who were in the room. “With your bravery, with your resilience, you make us want to be better providers,” Matin remarked. “You make us want to be more successful and find a cure for cancer. It’s a privilege to be able to take care of wonderful people.”
There is still much work to be done toward finding a cure, but, as the Talleys and Matin pointed out, collective, communitywide efforts can help Massey get closer to eradicating the disease. “Our story is our own, but it is similar to so many others,” Amie-Anne observed. “We are some of the lucky ones. With the support of people like each of you and the support of Massey, we know we have the best possible odds of socking it to colon cancer.”