Darcey Meus, 34, didn’t have time to be sick.

In 2021, the busy, working single mom was having trouble swallowing. At the same time, she began experiencing pain in her left shoulder blade, which she assumed was a pinched nerve.

“I thought I was just a tired mom,” she said. “What mom isn’t exhausted? What mom doesn’t have occasional aches and pains?”

But once breathing became a struggle, she couldn’t ignore her symptoms any longer. An X-ray showed a mass in the middle of her chest, close to her heart.

Doctors told her to get to the ER immediately. At Novant Health Presbyterian Medical Center in Charlotte, the team first had to take care of fluid that had built up around her heart before addressing the mass. They placed Meus in the cardiac ICU and put in a pericardial drain.

Next, a biopsy. On Nov. 8, 2021, Meus learned she had a rare and aggressive blood cancer – primary mediastinal B cell lymphoma (PMBCL). It’s a type of non-Hodgkin's lymphoma that affects the lymph nodes in the chest directly behind the breastbone.

Her prognosis was good, but the treatment would be intense. And incredibly time-consuming.

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When the hospital becomes your home

Cancer disrupts the lives of every patient. It disrupts the lives of their families, too. But the treatment for PMBCL is especially challenging.

Meus had to get chemo as an inpatient because it could drastically decrease her white blood cell count and put her at far greater risk of dangerous infections. So, for the patient’s protection, it must be administered in a hospital setting. She got eight cycles, which required her to be in the hospital for five consecutive days every three weeks. For six months.

Meus’ daughter, Esther, who was 6, had started kindergarten just a few months earlier. It was a terrible time to be away from her.

Meus had every reason to resent being away from her job – she worked as a customer advocate for Tithely, a church technology company – her daughter, her life. And yet, she appreciated everything about the care she got – including the hospital that became her temporary home.

How’d she do it? Read on to learn more about how Meus came to not just tolerate – but cherish – her time in the hospital.

Have a medical team you trust.

Skarbnik_Alan_Head
Dr. Alan Skarbnik

Dr. Alan Skarbnik, a hematologist with Novant Health Cancer Institute - Ballantyne, and Mallory Johnson, his nurse practitioner, were her core team. Skarbnik leads Novant Health’s lymphoma and chronic lymphocytic leukemia program as well as experimental therapeutics, malignant hematology. Together, they explained at the outset what her treatment entailed.

She loved Skarbnik’s bedside manner. “He’s very funny,” she said. “And he treated me like a person instead of a cancer patient. My relationship with my caregivers was a partnership. We were in this together. We had the same goal: getting me healthy and home to my daughter.”

PMBCL is a treatable form of cancer. But the treatment isn’t easy. The most common chemo regimen is a combination of drugs called DA-EPOCH-R. It’s given via IV as a 96-hour, continuous infusion.

One of the drugs in EPOCH is “bubbly” and can cause the tube to kink up. A nurse would have to “unkink” it, which would prolong her infusions. But, Meus even found a silver lining in that.

“Because the nurses had to reset my machine, I got to see them regularly and develop relationships with them,” she said. “I love them all. They understand me in a way no one else could.”

Think of the hospital as a comforting, healing place.

“I found tremendous comfort in knowing I was in good hands,” Meus said. Instead of considering the hospital as something to endure, she thought: “Wow, I get to go here – to a place where people are helping me heal.”

Meus didn’t resent her pouch of chemo. “If that pouch was going to get me home to Esther, then I was all in,” she said.

She’d have five days of chemo, go home for 16 days and then return to the hospital and start the process all over again. She did that eight times. And, she had two more rounds of preventive chemo. She didn’t see it as a hassle; it was saving her life.

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If you can move around, do.

Meus may have been confined to the hospital, but she wasn’t confined to her room. “I’d walk the halls to stay active,” she said. “I tried to keep moving.” When she wasn’t moving, she found other ways to entertain herself. Plus, she got to binge the popular Bravo series, “Below Deck” – something she rarely gets to do at home.

Lean on your support network.

Meus needed help at home, and her mom and Esther’s dad (the couple were no longer together by this time) provided that. “I relied on Esther’s dad a lot,” she said. “On the weeks I was in the hospital, she was with him. And my mom was great at getting Esther to and from school when I couldn’t. We did a lot of creative scheduling, a lot of shuffling. You have to be flexible.”

She also craved company in the hospital. Family and friends made sure she wasn’t lonely. Her two sisters came from out of town for repeated visits. Everyone wore masks to protect the immunocompromised Meus.

Her colleagues compiled a Spotify playlist of upbeat music. “The love, support and encouragement were incredible,” she said. “So many people reached out to wish me well.”

Embrace tokens of love.

Meus’ daughter was too young to visit, but she sent a little stuffed monkey, by way of her aunts. “It kept me company during treatment,” she said. “Tiny Monkey became the mascot of my cancer experience; it was with me every time I went to the hospital.”

Remind yourself: This is only temporary.

Meus had a mantra that got her through cancer. She kept telling herself and others, “This is only a chapter.” She said, “I’m a faith-based person, and I think believing things would be OK was extremely helpful.”

Find joy. Or create it yourself.

It can be a challenge to find anything joyful during cancer treatment. But it can be done.

For instance, losing your hair can be traumatic. Meus turned it into a celebration. Her little sister, Abigail, is a hair stylist. With Esther’s “help,” she shaved Meus’ head. Her older sister, Norrie, and her mom were there, too.

That wasn’t scary for Esther, as Meus had prepared her: “Her dad and I decided it was appropriate to call it what it is and be honest about it. We told her I was sick, that it was called ‘cancer’ and that the medicine was so strong that it would make my hair fall out.”

After six months of treatment, Meus got a clear PET scan on April 28, 2022. She’s been in remission for nearly three years. “I feel really good,” she said. “There are things that have been hard since, but not hard enough to complain.”

She’s now an ambassador, of sorts, to other cancer patients. “There’ve been three other moms in my daughter’s school diagnosed with breast cancer,” she said. “People still ask if their friend can call me for advice. I’m able to support people in a way I would've never been able to if I hadn't walked through it myself.”

Meus still returns to Presbyterian every six months to have her blood checked. Her care team looks forward to her visits. “Darcey spread positivity in the clinic and on the hospital floor,” as one team member put it. “We all get excited when she comes to clinic because she’s such a joy to be around.”

Once Meus reaches the five-year mark in 2027, she’ll only need to be checked annually. “And even that makes me feel good,” she said. “Just knowing that I’m being monitored every year gives me a great sense of peace.”

For another take on Darcey’s story, check out WCNC-TV’s news story.