Fighting cancer with every step to Patagonia

NUTLEY, NJ — When Nutley resident Michael Mankowich’s lower back started to bother him, he figured it was a souvenir from his earlier athletic days. Mike, 58, had been a top-notch wrestler at 132 pounds at Long Island’s Commack North High School. He’d been an all-American, in fact, as well as a two-time all-Ivy, three-time New York state champ and three-time EIWA tournament placer as a wrestler at Cornell University. An old wrestler’s injury was all it was, he figured, a physical reminder of a quick takedown of an opponent 40 years long forgotten.

But the pain did not go away.

Mike began to see a doctor and a chiropractor, and eventually he got an MRI. The news he received at Memorial Sloan Kettering Cancer Center in February 2017 was not good. He was diagnosed with multiple myeloma, a cancer that attacks the blood plasma cells responsible for creating disease-fighting antibodies.

“They figured it out quickly at Sloan,” he said recently, seated with his wife, Kathleen, in their Rutgers Place home. “I kept it from Kathleen.”

With this news, he became withdrawn, and his wife realized something was wrong. Mike told her what he had learned, and, as so often happens when a couple puts their heads together, they found some reason for hope: multiple myeloma is a blood disease in the bone marrow and, as such, does not metastasize.

“That’s where all the action takes place, in the bone marrow,” Mike said. “You have to keep your chin up.”

For treatment, he became part of a six-month chemotherapy clinical study. Mike was glad to be in the study, because most multiple myeloma patients go on chemotherapy for three months and then undergo a stem-cell transplant. He, however, would not.

“A stem-cell transplant blows out the immune system,” he said.

Kathleen, an administrative coordinator at Felician University School of Nursing, said her husband, a real estate management employee, did not break stride and never missed the commute to New York City during the clinical study.

A member of Nutley High School’s Class of 1976, Kathleen got on the computer.

“When your spouse is diagnosed with an incurable cancer, you do a bit of research,” she said.

She discovered the Multiple Myeloma Research Foundation website and learned it was founded 30 years earlier by a woman named Kathy Giusti, who was living with the disease.

“That gave me hope,” Kathleen said.

She also learned about a collaboration between MMRF and CURE Media Group called Moving Mountains for Multiple Myeloma, or MM4MM.

This collaboration promotes endurance events, undertaken by multiple myeloma patients, to places like Mount Fuji, Mount Kilimanjaro and Iceland. The treks raise money for research, as well as public awareness about the disease. A patient selected to participate in one of these exotic treks had to raise funds, but the trip itself was underwritten by Celgene, a pharmaceutical company headquartered in Summit.

Mike was interested and applied in November 2018 for a spot on a team going to Patagonia. He was interviewed and accepted on condition of raising $10,000 for MMRF research. He suggested that Kathleen accompany him, and they eventually raised $30,000 through social media and by asking friends, family and neighbors.

The online MMRF page devoted to Mike’s fundraising shows a photograph of him with his arms around Kathleen and their daughter, Mary, a Class of 2020 NHS student.

In a letter featured on the page, Mike informs the reader that MMRF is one of the world’s leading private funders of myeloma research, with 10 new treatments approved by the Food and Drug Administration.

In August 2019, Mike and Kathleen were flown to Oregon to meet their teammates and to get a taste of what was in store for them in Patagonia. According to the MM4MM website: “Each team is carefully selected, representing a microcosm of the myeloma community — patients, caregivers, health care professionals and clinical trials managers, as well as representatives from our pharma partners, from CURE Magazine and the MMRF — to emphasize the collaboration necessary to drive toward cures.”

“The foundation sent the group to Mount Hood,” Mike said. “It was the first time we met. What a great group of people. There were around 15 from all over the country, and there was one other couple, but no one else from New Jersey.”

Four other multiple myeloma patients were in the group, he said. he team climbed for nine hours and then headed home.

To prepare for the trip to Patagonia, a region containing part of the Andes mountain range, Mike and Kathleen began a regime of long walks. For instance, they’d walk from Nutley to South Orange and went hiking in New York’s Harriman State Park.

The MMRF website described the journey as one of arduous adventure: “This team will traverse Patagonia crossing over glaciers, through deep valleys, and ascending challenging peaks. This is a powerful and life-changing experience, as the team overcomes challenges, pushes beyond perceived limits and honors loved ones and friends living with multiple myeloma.”

For the trek, the team flew to El Calafate, Argentina. As the team embarked on different climbs, documentary filmmakers accompanied them.

“The hiking was physically difficult,” Mike said. “We hiked in rain and incredible winds. In one particular hike, as soon as you felt the winds, you hit the ground. I was surprised nobody got hurt. Some of those slopes were pretty steep. But the scenery was unworldly, and there were condors.”

Both Mike and Kathleen agreed that the most memorable sight was La Condorera, which their itinerary described as “a nearly vertical massif, offering a home to one of the greatest concentrations of endangered condors in the world.” A massif is a group of mountains standing apart from other mountains.

“It was a difficult hike,” Kathleen said. “You’re ready to pass out getting to the top. But it’s so worth it. The panorama is a view of glaciers and condors. It was spectacular.”

Mike and Kathleen returned home on Nov. 16, but there were no goodbyes at the airport. The team had grown so incredibly close that everyone felt they would be seeing each other again, a feeling grounded in the knowledge that multiple myeloma can be challenged and hopefully, one day, defeated.

“Our goal in all of this is that you can have multiple myeloma and still do incredible things,” Kathleen said.

“It’s an incentive to other patients to get out there and enjoy their lives,” Mike said. “And find a cure for multiple myeloma. I have a little bias. I have it.”