For Colorado Hodgkin lymphoma patient and future doc, disease was a health-care eye-opener

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You’ve got your whole life ahead of you, then suddenly you don’t.

You’ve never felt alone, then suddenly you are.

Cancer doesn’t just attack the body. It makes you question everything.

“My name is Will. I am 22 years old. I’m afraid that I’m going to die.”

Will Moody had noticed a small lump in his neck in late 2019, but he wasn’t worried. The Cheyenne Mountain grad was young, healthy, super athletic and super busy — barreling through his senior year and a bachelor’s degree in molecular biology at the University of Denver. His life entailed a blur of classes, studying for the medical school admission test and juggling a full load of extracurricular activities, including tutoring and volunteering at a student-run clinic and the Denver Rescue Mission.

After he found a second small lump a few months later, he took his mom’s advice and went to student health services on campus. A blood test showed his white blood count was slightly elevated, a sign of a possible infection, and he was told he should consider going see an ear, nose and throat specialist when he got a chance.

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“That was the second or third week of February (2020), and he was basically going from 6 a.m. to 11 o’clock at night, every single day, and he didn’t have any other symptoms,” said Will’s mother, Cheryl Marcus, a Colorado Springs dermatologist. “He just noticed, maybe, that he was more tired, maybe he wasn’t eating as much, but … he was like, ‘I’m busy,’ and he didn’t really think it was anything.’”

That perspective changed after Will contracted COVID-19 while, he believes, volunteering at the mission during the early weeks of the pandemic.

Cheryl remembers a phone call to her son around that time, in April of last year. He was so sick he told her he hadn’t been able to get out of bed for three days.

“And this is a kid who’s never sick. I said, ‘You probably have COVID. You need to come home, and you need to get tested,’” said Cheryl, who, as a physician, was well aware of the symptoms and threat the virus posed, as well as the potential challenges of getting in to see a provider during the shut-down.

Will came home to quarantine, and his test came back positive for COVID on April 25. His family was able to care for him at home, without catching the virus themselves, but Will was “sicker than a 21-year-old should be,” said his mother.

He was wracked by chest pains, and developed a blood clot and a buildup of fluid around the heart. Even after his “recovery,” Will’s mom didn’t have to see the pain in his face to know something was still very wrong.

“When he came out of quarantine, I could see basically golf balls in his neck, just huge lymph nodes. And he’d lost almost 20 pounds,” said Cheryl, whose husband is Springs urologist Jeff Moody. “We quickly got Will in to see an ENT, even then thinking he was just sick. We never once thought this is something really bad, something like cancer, even though we’re both doctors.”

What they couldn’t see” The iceberg base of the tumor underneath their son’s skin had grown so large it was pushing on Will’s brachial plexus, a bundle of nerves in the shoulder, causing “excruciating” pain down his arm and the left side of his body.

Later that week, a biopsy confirmed the ENT’s original suspicions.

On May 15 Will was diagnosed with Stage 2 classic Hodgkin lymphoma. He started chemotherapy at the Rocky Mountain Cancer Centers in Colorado Springs the following Friday, May 22.

His 22nd birthday.

“That was probably my most memorable … and least favorite birthday I’ve ever had,” Will said.

• •

“Time passes. Happy birthday. Happy birthday. Happy birthday. Around and around the drain it goes.”

• •

Hodgkin lymphoma is a cancer of the lymph nodes, the body’s immune system.

There are at least 60 different types of lymphomas, all of which have very different features at diagnosis, treatment courses and expected outcomes. For doctors, the first job is to find out what type they’re dealing with, said Dr. Loretta Nastoupil, associate professor in the lymphoma and myeloma department at the University of Texas MD Anderson Cancer Center in Houston.

“And the biggest breakdown there is, is it non-Hodgkin or Hodgkin,” Nastoupil said.

Hodgkin lymphoma, identified by the presence of a certain type of cell, was one of the first cancers ever described and is named for the researcher who identified it.

Though considered rare, with fewer than 10,000 newly diagnosed cases each year in the U.S., it’s actually one of the most common types of cancers in kids and young adults. Generally speaking, it’s also among the most curable, with almost 75% of patients free of the disease for life after the initial standard chemotherapy regimen.

“We just figured that would be Will,” Cheryl said.

Will did too.

After the fourth chemotherapy treatment, he went into complete remission.

“From that point, I had about a 90% chance of being cured for forever,” Will said.

In November, however, a follow up scan showed that his cancer had returned.

“That was really hard news to get. Especially because I was not anticipating it at all,” he said.

His cancer had defied the odds, in a bad way.

“In his case he had the lymphoma recur right at the conclusion of his treatment, and that’s uncommon,” Nastoupil said.

If the standard chemotherapy regimen doesn’t kill all the lymphoma cancer cells, there’s still hope for a cure.

Next stop: salvage chemotherapy.

“We have to intensify our therapy. Usually with that, we can cure a portion of patients … and go on to a stem cell transplant,” Nastoupil said.

Will again defied the odds.

Salvage chemotherapy failed to eradicate his cancer.

• •

“When you get bad news, sometimes it feels like you will never stop getting bad news.”

• •

Growing up, Will was the kind of kid who could strike out three times at bat and still find a reason to be inspired and excited about the game, said his mom.

“He’d be, like, yeah that happened … but did you see what happened afterwards?” said Cheryl. “He’ll come up with a reason why even something that didn’t go well is in his favor. He just finds the positive in every situation, and that is a mental toughness that a lot of people don’t possess.”

A resistant cancer was a new challenge for a young man who’d never before struggled to muster up hope, who had never before been forced to do it alone.

“Going to the appointments and just sitting there while they’re essentially pumping poison into your veins for hours and hours, was very difficult to go through alone,” Will said. “That was another downside to COVID, and definitely a real one that cancer patients everywhere have been facing for the last year.”

It wasn’t easy for his mother, either.

“That was devastating for me, for all of us,” she said. “It has been such a compounding problem. And I do wonder, also as a physician, if we’ll look back on this time and wonder if we could have done better, for patients and their families.”

COVID-19 unquestionably changed Will and his family’s journey with cancer, but not as much as it might have. He sought a diagnosis, during pandemic times, and — after having the virus — went on to test negative, so was able to pursue treatment.

“And as we all know now, that doesn’t always happen. It could take months before someone who had COVID tests negative, and it can be totally random,” Cheryl said. “We got lucky with that.”

The reason Will’s bout with the virus, and the manifestation of the lymphoma, were so extreme was likely because his immune system was fighting two enemies at once.

“People with cancer are at an increased risk of getting a severe illness from COVID-19, as are those with preexisting conditions such as chronic kidney and heart disease, or anything that can lead to a weakened immune system,” said Dr. Anuj Peddada, a radiation oncologist with Penrose-St. Francis Health Services who has treated lymphoma patients for twenty years.

Will chose and was able to pursue treatment promptly, despite the pandemic.

In his practice, Peddada has unfortunately seen the opposite.

“The thing that I have seen in my patients, with COVID, people weren’t going out as much and they were not keeping their typical screening appointments,” Peddada said. “The delay in care, in the past year, I’ve seen a little bit more locally of what’s called advanced disease compared to earlier because they didn’t come in. Access to medical practices was limited, so it made it harder for everyone. People that could have been caught with earlier stage disease … that delay allowed it to progress.”

Briefly discouraged but undaunted, Will Moody continued to pursue his options, and his plans for the future — however long that future might be.

• •

“Cancer is a solo journey. You have all of these people around you, sending you thoughts, prayers, wishes, and it is amazing. But you are alone.”

• •

As a young adult with cancer, you don’t have a lot of peers who know what you’re going through.

One person Will did connect and become close friends with: a fellow Cheyenne Mountain graduate who had a similar experience before pandemic times.

But cancer during COVID isn’t the same.

“His friend would share stories of how he would have his grandma, his mom, all the people who would come with him to chemotherapy. Will always had to go alone, and he had to get all of this information alone,” said Cheryl, adding that oftentimes a companion isn’t just about comfort. “When you have cancer and you’re hearing that diagnosis … the last thing you hear is that word, then you hear nothing else. You don’t hear all of the other very important facts and information that the doctor is trying to tell you.”

After he learned the salvage chemotherapy didn’t work, Will started an online blog, “The Rest of Your Life,” where he posts entries and essays about his experience with cancer.

The project fulfilled part of a “to do” list — “tell your story” —  he’d formulated when he first learned he was sick. The site isn’t just for him. He hopes it will help connect people who have struggled to find understanding voices, as well as support efforts to expand the bone donor registry.

The intense chemotherapy that lymphoma patients undergo to kill the disease also irreparably damages their bone marrow, requiring a transplant — from their own bodies, ideally, or otherwise from a donor.

“It’s the easiest way, honestly, to save someone’s life. All you have to do is take a cheek swab and send it back to them and you’re in the registry,” Will said. “If you match with anyone, anywhere in the world, they will contact you.”

After his salvage chemotherapy failed, Will began seeing doctors at MD Anderson, home to a team specializing in treatment-resistant forms of the disease. He was put on an immunosuppressive drug therapy, Keytruda, that had shown success in the treatment of other cancers, but is still considered experimental by the FDA for lymphoma.

His cancer responded.

Last month, he learned that he was again in complete remission.

“It was very good news obviously, but surprising. I had packed a month’s worth of clothes because I was going to be down there for a month worth of therapy,” Will said.

• •

“Early on, I was faced with a decision: I could decide to let my illness work on me, and I could crumble under the randomness of it all, or I could decide that my illness was going to work for me.”

• •

Remission means Will’s own stem cells can be used to replenish his bone marrow, and a final round of intense chemotherapy in Houston that’s aimed at wiping out the last of any remaining cancer cells.

“I feel good right now. I’m in total remission. I feel the best I’ve felt in a year, and the drug I’m on has few side effects,” Will said.

He’s heading down next week for what he hopes are his final treatments, which he will go through with a parent at his side. Both mom and dad have been vaccinated, and the hospital has given the approval for one parent to live with him during the therapy. Afterwards, he will return home — a young man with a bright future, and an aspiring doctor — with a perspective on healthcare that’s far beyond his years (and MCAT scores in the 90th percentile).

“From the very beginning, and we’ve been with him through this whole journey, there was just no doubt that he was going to take this on the way he has handled any challenge,” said family friend Carrie Trookman, who has known Will and his two sisters since they were in diapers.

“This is just part of his story and a path to being a physician that he never expected to have to take. There’s been a lot of challenges, trust me, but he just seems more driven than ever to beat cancer, put it behind him and to become a physician.”