Amy Charney: Portrait of Courage
She walks out of her house with her pink running shoes on her feet and a bottle of water in her hand, looking like she’s off to run a race. In many ways that’s how Amy Charney prefers to approach her fight against breast cancer.
Since her diagnosis in January – stage 1A invasive ductal carcinoma – Charney had received 11 chemotherapy treatments at the UNC-Chapel Hill’s Lineberger Cancer Center. Today would be No. 12.
Like always on treatment days she wears her running clothes. They make her feel less like a cancer patient and more like herself: the mother, the wife, the race director, the woman who has run a dozen marathons and was training for her 13th when she found a lump.
That was nearly a year ago. Now Charney is on her way to Lineberger for another treatment in a clinical trial for a drug her oncologist hopes might revolutionize the treatment of her type of cancer.
Cancer treatments often are agony for patients. Chemotherapy side effects include hair loss, fatigue and nausea and, at worst, heart damage and leukemia. Charney’s treatment has mostly spared her. She calls it “cheater chemo” beause she has kept her hair and most of her energy.
She ran the first day after her first treatment, lined up for a marathon six days after her third treatment and is planning, after her 12th treatment, to run Sunday in the City of Oaks Marathon in Raleigh.
Sometimes she wonders, “Is it really chemo?” For Charney, 47, the side effects have been minimal. Or perhaps she is just that strong. A family member once told her: “If I were cancer, I’d be scared of Amy.”
On the way to the hospital she takes big sips of water every few minutes. The nurses told her the more she drinks the easier it is for the IV needle to slide into her arm.
Things like that are routine now, familiar. Like the drive from her Carrboro home to UNC’s campus.
“I don’t find it depressing to go to Lineberger now that I’m comfortable with it,” Charney says. “It’s one more check off to getting closer to the end.”
That’s the marathoner in her, measuring her distance to the finish line. Twenty years ago in her hometown she’d run her first marathon as a Boston Marathon “bandit,” one who runs the race unofficially, without qualifying. It ignited a passion for distance running.
She ran the New York City Marathon for the first time in 2000, and the Chicago Marathon that same year and then the Boston Marathon, officially, in 2005. She ran it five more times and was training to go back, on the anniversary of her first “unofficial” marathon, when she found the lump.
I don’t want to come here and feel like a sick person.
So began her journey from doctors office to doctors office, to the operating room to remove her tumor and then to Lineberger, like now, for treatments every three weeks. Charney parks in the hospital deck, passes the elevator and takes the stairs, always the stairs, to the level with the walkway.
“I don’t want to come here and feel like a sick person,” Charney says, each step taking her closer to a room filled with people waiting for chemotherapy infusions that make them sick in the hopes they eventually will make them better.
After this one, Charney has five more treatments to go – 15 more weeks. Sometimes she thinks about reaching the end – “where am I going to be mentally?” – but she tries to never jump too far ahead.
That’s one of the lessons running marathons have taught her: never count a mile completed until it’s behind you. And on a recent Thursday morning, as she walks toward chair No. 22 in the infusion room, everything is ahead of her.
There are the normal checkups, needles and tests and then the waiting, if the tests look good, for the drug that might change the way Charney’s type of breast cancer is treated. That’s the hope, anyway.
New standard of treatment
Her first few times at Lineberger, Charney was scared. She wondered whether her bloodwork would come back OK. She worried about her weight.
“I used to be nervous with this part,” she says after a technician leads her to the scale, “because I was losing weight.”
This time it’s unchanged.
“Now I’m chunky,” she says, and the staff members around her laugh.
That Charney calls herself chunky – an assessment her medical professionals would dispute – is in part a testament to her treatment and to the chemotherapy she receives as part of her participation in a nationwide clinical trial called “ATEMPT.”
The trial, which originated at Dana-Farber Cancer Institute in Boston, is designed to test the effectiveness of the drug TDM-1, or Trastuzumab emtansine, on low-risk, lower-stage “HER2-positive” breast cancer.
About 20 percent of breast cancers – including Charney’s – test positive for HER2, a protein that accelerates the growth of cancer cells. The drug TDM-1 targets those cells and it is designed to minimize the effects of traditional chemotherapy.
Lineberger has 10 patients, including Charney, in the trial. UNC is one of a long list of hospitals, including Duke, MD Anderson and Memorial Sloan-Kettering, that are participating in it.
If the trial goes well – and initial results have been positive, says Dr. Lisa Carey, Charney’s oncologist – then the way Charney is being treated one day could become the standard.
That is important, Carey says, because patients like Charney almost always have been treated with too much of what they don’t need.
“Those are the ones that we not only fear that we’re over-treating, we actually know that we’re over-treating,” says Carey, who also is the medical director of the UNC Breast Center within the Lineberger Cancer Center. “So that’s what made her a good candidate (for the trial).”
Still, Charney had questions: How did it compare to traditional treatment? What were the benefits of the drug, aside from a better chance of keeping her hair? And just as important: Would she still be able to run the Boston Marathon?
Carey was skeptical, although she kept her doubt inside. In her 20 years treating breast cancer she’d had one other patient do what Charney wanted to do – run the Boston Marathon on active treatment.
“I thought that probably was a bit of a stretch,” Carey says one day in her office across the street from the hospital. “On the other hand, I was very hopeful that she would be able to keep things as normal as possible and to be as active as she was before.
“Which is exactly what we want of this (trial).”
Charney registered for the Boston Marathon the first day she could, in September 2014. When the confirmation postcard came back in the mail she put it on her refrigerator, a reminder.
Then came the discovery early last November of the lump during a shopping trip for her oldest daughter’s Bat Mitzvah. Charney gasped when she felt it, but now she describes the lump as a “savior.”
Her annual mammograms always had come back normal. Amid her diagnosis, which became final Jan. 21, she learned she has “extremely dense” breast tissue, a characteristic that limits the effectiveness of mammograms.
“What scared me,” Charney says, “and I'll never know, was (that) my mammogram was normal a year ago – and was there something there?”
The marathon was April 20. It took a little while for Charney to digest her treatment options. Her first infusion came a little more than a month after her final diagnosis, and with the marathon looming Charney ran 3 miles the day after her first treatment.
Early in her treatment she ran four or five times a week with one thought: “Could I run Boston?”
“I was sort of running, mentally saying to myself, would I be able to do this if I kept going?” Charney says now. “So I’d get 8 miles in instead of 18. But I was like, ‘I don’t care what my time is. You don’t have to break any records.’ ”
In the past Charney did have to break records. When she ran the 2013 Philadelphia Marathon she wanted to break her personal record of 3 hours, 36 minutes, 40 seconds – and she did, by about one minute. Her goal for Boston: Just finish.
Charney doubted herself at times. She put off buying her plane ticket.
“I was tired. I was emotionally drained,” she says. “I was more depressed and anxious, and everything.”
Her training became more mental than physical. She reminded herself she never could finish what she didn’t start.
The “cheater chemo” made training easier but, it still was chemo. After her second treatment, she visited family in Florida and ran 16 miles. That was proof enough.
Four weeks from the race, Charney bought five plane tickets – one each for herself and her husband, Jon, and daughters, Julia, now 14, Elisabeth, 12, and Ava, 8. Three days after her third treatment she was on the plane.
There still were doubts, even the day before. On race morning she pushed them out of her mind.
“I was like, ‘I feel good, I don’t feel tired – I’m just going to go and I’m going to get in my zone, and I’m just going to run the whole race,’ ” she says.
While Charney ran 26.2 miles she wore a shirt that said, “She’s a Fighter.” Her daughters wore ones that said, “My Mom is My Hero.” Back in Chapel Hill, Dr. Claire Dees, one of Charney’s doctors at Lineberger, followed Charney’s progress online.
After Charney finished in 4:05:00 – 20 minutes slower than normal, she said, but 20 minutes faster than she anticipated – Dees sent Charney an email:
“You are an inspiration! I just looked at the times. I think you had a 9 minute pace. On active therapy! Wow! What a story. …We are all honored to be on your team.”
Charney saved the note. Her team is larger than she could have envisioned eight months ago.
She inspired one nurse to start running. Another approached her about a 5K training program. During her 12th treatment, Charney asks that nurse how her running is going.
“Well,” the nurse says, dryly, “No one’s chasing me with a machete. So … ”
They both laugh. Charney reminds the nurse why she runs: “I forget about everything that’s going on.”
She has created bonds that wouldn’t exist if not for this experience. And found inspiration in others.
During her treatment session, Charney pulls out her laptop and watches a video clip of her friend Andrea Peet crossing the finish line of a triathlon that Charney directed as part of her job with Endurance Magazine in Carrboro.
Peet, a Raleigh native who completed a half-IronMan and four other triathlons in the year before she was diagnosed with ALS, had contacted Charney asking if she could use a recumbent tricycle during the biking portion of the triathlon. She no longer could balance herself on two wheels. Charney said yes.
“When I met Amy before the race, I told her I had no idea how long it would take me,” Peet, who now lives in Silver Spring, Md., wrote in an email. “I told her I was confident that I would finish eventually, but I totally understood if they needed to pack up the race before I completed it.
“She said she would keep the race open until I crossed the finish line and would personally put the medal around my neck.”
Like all of us, she is just living her life the best way she can and not letting any challenges – even cancer – get in the way.
Andrea Peet, triathlon competitor with ALS
That’s the scene Charney watches in the infusion room. Now that’s an inspiring story, she says. Way more than what she’s doing. But that’s Charney, Peet wrote in an email: “Far too humble.
“Like all of us, she is just living her life the best way she can and not letting any challenges – even cancer – get in the way,” Peet wrote. “Isn’t that what we’re all striving for? That takes a steely kind of strength and courage, both physical and mental, and that is what inspires me.”
Peet will compete Sunday in the City of Oaks Marathon, riding her recumbent tricycle. She asked Charney to run alongside her. Charney has scaled back her distance running but agreed to run at least 6 miles next to Peet.
“I have a hard time saying no,” Charney says, “when someone asks me to run.”
A nurse enters the room – “are you feeling lucky?” she asks – and works the IV needle into Charney’s left arm. It takes about 45 minutes for the bloodwork to come back OK.
Then Charney has to answer questions: No, she hasn’t felt nausea or numbness. No, she hasn’t been excessively tired. Yes, she still has difficulty organizing her thoughts – “chemo brain,” Charney calls it – but that is the only side effect she has really felt.
Now comes the longest part of her appointment: waiting for the TMD-1. The minutes drag on. Sometimes Charney wonders what finishing this race will feel like.
“Kind of this euphoric feeling of crossing the finish line,” she says. “But now what?”
Will she be cured? What is the definition of that, anyway?
After more than an hour a nurse wearing a protective blue plastic suit walks in with a bag of medicine that could be the future of breast cancer treatment. She sets a timer and the liquid drips from the bag into a tube in Charney’s arm.
“Soon we’ll be able to say there’s five left,” Charney says of her treatments. “But not now.”
About 73 drips per minute fall from the bag into the IV line. After 36 minutes the machine begins beeping. A message flashes on the screen: “INFUSION COMPLETE.”
The nurse unhooks the IV and Charney is on her feet for the first time in about 3 1/2 hours.
“Now we can say five left,” she says, and she walks out of the infusion room steps closer to finishing her most difficult marathon.
City of Oaks Marathon
The event features six races, including the marathon and a half-marathon. All races – with the exception of the YMCA Kids’ Marathon Mile – will start at 7 a.m. (the kids race will start at 7:20 a.m.) on Nov. 1.
Most of the races will start and finish at the N.C. State Bell Tower on Hillsborough Street.
For more information go to cityofoaksmarathon.com