She was too young. Never smoked. Lived healthfully. Then Amy Richard went from CMMC lung cancer nurse to stage 4 lung cancer patient.
HEBRON — The last weekend in October, Amy Richard started coughing.
A bad cold was going around, but her cough lasted longer than most: days, then weeks, then a month.
An inhaler, the steroid Prednisone and two courses of antibiotics didn’t help. A chest X-ray showed fluid around her right lung but little else. A test of the fluid didn’t turn up anything out of the ordinary. Neither did a second test.
Meanwhile, fluid clogged Richard’s lung, making it difficult for her to work, care for her two young children or, sometimes, even breathe. Doctors said she had bronchitis, then, they thought, pneumonia.
“I’m a nurse, so cancer was always on the radar for me, but it was at the bottom of the list,” she said.
At the bottom because Richard was only 41, a nonsmoker with no exposure to any of the things medical professionals typically think of: asbestos, radon, secondhand smoke, pollution. She knew all of that because she’s one of those medical professionals.
For the past 11 years, Richard has helped treat lung cancer patients in Lewiston.
In January, she became one of them.
“I want people to know that it can happen to anybody,” Richard said. “I never in a million years thought I would have lung cancer.”
‘WHY WOULD YOU HAVE THAT?’
Lung cancer has a stigma.
Unlike many other cancers, it’s often linked to a behavior: smoking. So patients get blamed for bringing it on themselves.
Experts estimate that about 20 percent of lung cancers are found in nonsmokers. Some have been exposed to other carcinogens, such as asbestos and radon.
Others, like Richard, have a genetic mutation.
As lung cancer often does, hers developed silently, unnoticed. Even when she started coughing, no one was alarmed — including her Central Maine Medical Center co-workers, the people who deal with lung cancer every day.
“I thought she had bronchitis and it was just going to be a viral thing and it would go away,” said Danielle George, a longtime friend and a physician assistant who works with Richard at Central Maine Cardiothoracic and Vascular Surgery. “I’ll tell you, I get a cough like that every spring and I never think anything about it.”
Richard’s boss, cardiothoracic surgeon Carmine Frumiento, didn’t even realize Richard was sick. She might have mentioned she had a cold, he said, but she didn’t complain about being weak or not feeling well. She was the same ultra-competent nurse, the same office “linchpin,” that she always had been.
Then, one day in December, Frumiento was driving to New York when one of his physician assistants texted him a picture of a chest X-ray. It was Richard’s, and her right lung was filled with fluid.
“It was clearly grossly abnormal. You could figure that out on a 3-by-5 screen on my phone,” he said. “I first thought to myself, ‘Common things are common, so she just has a pneumonia with fluid collection.'”
But when Frumiento arrived in New York, he experienced his first trickle of dread.
“As I kept staring at the film after I was out of my car, staring at my phone … as a surgeon, we’re trained to rule out the things that are going to kill you or do you harm, and if it’s not that, then we can worry about what it is. So that kind of kicked in,” he said.
“I always think in worst-case scenarios. It started occurring to me, well, is this really all fluid? Why would she have all this? She didn’t really look that sick. I kept trying to hang on to the idea that common things are common and she just had a pneumonia and this was secondary to a pneumonia and we’re going to be good. But at the same time, in the back of my head, was that this was extremely odd.”
A CT scan a few days later supported a pneumonia diagnosis. But again, something didn’t seem right. The scan showed a thickening or lumpiness on her chest wall.
It could easily have a benign explanation. Given Richard’s age, health and nonsmoking history, everyone leaned toward it being harmless.
“Were we just too hopeful? I don’t know,” Frumiento said.
Regardless, the next steps would be the same whether or not they suspected cancer. Doctors drained the fluid and sent it for testing, twice. It came back negative for cancer cells both times — not a definitive no to cancer, because cells could have been missed, but it was a good sign.
A pulmonologist prescribed antibiotics and steroids. The medication didn’t help at all. Work was becoming harder. Caring for her 6-year-old daughter and 2-year-old son was becoming harder.
“Do you think I could have cancer?” she asked George, the PA and one of her closest friends.
“Why would you have that? You’re a nonsmoker, you’re healthy,” George told her. “I just don’t think that could be it.”
A second CT scan showed the lumpiness hadn’t improved. In fact, it might have gotten a little worse.
Frumiento scheduled surgery for late January. His plan — his hope — was to clean out the infection.
“Of course, in the back of our minds is, ‘This just doesn’t look right up there. I don’t know what it is,'” he said. “What we told Amy, which is what we were hoping and what I still thought the odds-on diagnosis was, this was an infection.”
But as Frumiento slid a tiny camera through an incision in Richard’s chest, he immediately knew this was no infection. Rather than puss, he found growths along her chest wall and lung.
Within about 20 minutes, the hospital lab confirmed cancer. In part because the growths had expanded beyond her lung and onto her chest wall, it looked like stage 4.
George, who’d been assisting with her friend’s surgery, began to cry.
“When she was waking up in the operating room, I couldn’t even look at her,” George said. “I had to stay in the back of the room because I didn’t want her to see my face before we told her because I knew she would know.”
‘EMOTIONAL ROLLER COASTER’
In the hospital waiting room, Chris Richard waited to hear about his wife of seven years. When Frumiento walked in, he quickly realized the news was bad.
“My world,” he said, “was destroyed.”
Amy Richard got the news from Frumiento a few minutes later as she lay in her hospital room recovering from anesthesia, her parents, husband and George beside her.
“All I remember is the word adenocarcinoma,” she said. “I thought I was still dreaming at first.”
For the next couple of days, everyone remained dazed. Her husband felt like he was existing in a long, dark tunnel. Richard struggled not only with the terrifying possibility of dying and leaving her children without a mother, but also with the surrealness of having stage 4 lung cancer.
“All of a sudden I go from being a caregiver to being a patient of my friends and work family,” she said. “It’s just so strange.”
But Richard believes she’s lucky, too.
The surgery was on a Tuesday and by Friday she was on her way to Massachusetts General Hospital in Boston for a second opinion and to talk with some of the country’s best specialists — thanks in no small part to her medical connections.
She had her husband for support, but she also had George, who traveled to Boston with them to take notes. Before the trip, George and Frumiento met to list all of the questions she should ask so the couple wouldn’t have to be responsible for getting the right information in the midst of their shock.
Mass. General doctors told Richard that her cancer would respond best to a promising new gene-target therapy — one pill a day, no chemo or radiation. Patients can develop a resistance to the medication over time, but it’s generally effective in the beginning.
“Something around 70 percent of the time it works. That’s not 100 (percent), but you know what? I’ll take it,” Richard said.
But her insurance ruled the medication was too new and refused to pay for it unless she tried an older treatment first. That older treatment would have to fail.
“Meaning either my cancer progresses, which I don’t really want to take that chance, obviously, or I have side effects I can’t tolerate,” Richard said.
But neither could her family afford the medication’s $12,000-a-month price tag.
With help from her doctors and their staff, she appealed the insurance company’s decision. And won. Richard started taking her new medication last week.
“All of this, it’s just been like an emotional roller coaster,” Richard said.
Co-workers and friends have helped with meals, diapers and child care. Family members set up a web page — FightLikeAMother.net — and created a crowdfunding page at YouCaring.com to raise money to help pay for Richard’s medical expenses not covered by insurance, travel to Boston and time off work. They had hoped to raise $5,000. So far they’ve raised over $22,000.
The organizers of the Celebration of Courage Co-ed Hockey Tournament recently decided to make Richard the beneficiary of this year’s games. The tournament will be held March 10 and 11 at the Norway Savings Bank Arena in Auburn.
Chris Richard has played in the tournament for years for families dealing with cancer. This year he’ll play for his own.
“After we got over Mass. General, that really hit us,” he said. “After that, it’s been so positive. Great energy. We’ve had a lot of support. We’re continuing to get more support.”
Amy Richard is concerned about the cancer patients who don’t have all that support.
“I can’t speak highly enough of everyone at CMMC, my work friends/family. At this point I literally call them family. They worked so hard to get me the best care. I mean, you still have to advocate for yourself as a patient, but I worry about people who don’t have connections,” Richard said.
She hopes going public about her cancer diagnosis — in the newspaper, on Facebook, on the website her family created — will help raise awareness of the resources that are there.
The Dempsey Center, based in Lewiston, provides education, counseling, support and therapies including massage and acupuncture, to cancer patients and their caregivers. Some hospitals, including CMMC, have an oncology navigator who helps cancer patients get appointments with specialists, find resources in the community and generally work through the system. CMMC has a partnership with Mass. General, allowing patients quicker and easier second opinions and appointments with specialists.
“And they can talk to us,” Chris Richard offered.
Amy Richard also hopes her story will raise awareness that lung cancer can happen to anyone, even young nonsmokers. It’s a fact she’d never fully realized herself — until she was diagnosed.
“There’s such a stigma out there and I was honestly one of the worst ones, being a nurse,” she said. “The majority of the patients I care for had a long smoking history. I’ve seen maybe one other case in the years I’ve been working of someone young, sort of, in this age group.”
While guidelines call for lung cancer screenings for older Americans who smoked — Richard’s medical office runs some of those screenings and will host an informational table at the hockey tournament — screenings of young nonsmokers is rare. Because of that, the cancer is typically advanced when it is found.
Like Richard’s stage 4.
These days, she works mornings only because she’s too tired and too often out of breath to feel good in the afternoons. But during those mornings, she’s the same steadfast, compassionate nurse she’s always been.
“The diagnosis was hard on everybody,” George said. “Nobody knew what to do without her. She’s that rock in the office and I think it was hard. ‘What do we do without Amy?’ Everybody sees her and they can focus and say, ‘OK, she’s OK.’ Because if you look at her, you would never know. She looks like the same old Amy.”
It is likely Richard’s cancer will never go away. Doctors have told her the genetic mutation cannot be passed down to her children, but it has altered her body forever and she will always carry cancer cells. The goal is to get her lung cancer under control, turning it into a chronic disease she can live with until better treatment — or a cure — comes along.
She refuses to feel sorry for herself or to consider any future other than one in which she’s there for her family.
“To me it’s like a challenge,” she said, cuddling her daughter, Olivia. “I know I can overcome this on some level. I’m not ready to leave my kids.”
“It’s not going to happen, anyway,” her husband added. “Nope.”
What: Celebration of Courage Co-ed Hockey Tournament
When: Children’s teams will compete March 10, from 8:40 a.m. to about 3 p.m. Adult teams will compete March 11, from 7:40 a.m. to about 5 p.m.
Where: Norway Savings Bank Arena, Auburn
Cost: Free. Donations will be accepted.
Know: The tournament raises money each year for someone diagnosed with cancer or an organization that helps people with cancer. This year, money will go to Amy Richard, a 41-year-old nurse and mother of two who was recently diagnosed with stage 4 lung cancer.