Matt Millen mowed his lawn on Monday, and then he went to chemotherapy.
Millen loves to cut the grass of his five-acre Bucks County home, where he has a woodshop, a barn and a kiln. He puts on a pair of spikes and walks behind his big industrial mower. Once a fearsome NFL linebacker who won four Super Bowl rings, Millen refuses to ride.
These days, however, it takes Millen more time to mow, as he continues treatment for a rare disease called amyloidosis that has robbed his heart of most of its normal function. Because it often goes undiagnosed, amyloidosis carries life-threatening effects.
“You continue to do the things you love to do, maybe not at 100 percent, but you do them,” said Pat Millen, Matt’s wife of more than 35 years. “You don’t stop or turn into this ‘woe is me’ type of person. That’s not him.”
All things considered, Millen has done well for himself. At 60, he has a “phenomenal” wife, four accomplished kids, seven grandchildren, a nearly 40-year football career as a player, general manager and broadcaster, a weekly Bible study group and a professional-grade workshop where he makes kitchen cabinets coveted by homeowners.
For all that he has going for him, Millen also likely will need a heart transplant, the result of living with this rare disease for years without knowing.
A Whitehall High graduate and All-America defensive tackle at Penn State, Millen spoke publicly about his condition for the first time this week to clear some misconceptions about his health.
Yes, doctors have said he needs a heart transplant, since his is working at about 30 percent of capacity. He has undergone chemotherapy most every Monday for eight months, and the side effects usually linger until Wednesday.
He tires more easily, walks a little slower. He also has lost weight, which is good.
“He says he has bird legs now,” Millen’s brother Andy said. “He’s down to the weight he played at in high school.”
But Millen still maintains a busy schedule that includes work, both on television and in his workshop. Millen, whose broadcasting career spans three decaces, made three visits recently to Penn State, one to serve as the Big Ten Network analyst for the Blue-White spring football game. He intends to return to the booth this fall.
Millen also continues his woodworking. He’s currently making a making a custom countertop for friend Dave Crowell, a Pennsylvania Hall of Fame wrestling coach at Nazareth High School who is part of Millen’s weekly Bible-study group.
Further, Millen and Pat want to raise awareness of amyloidosis, of which about 4,500 new cases are diagnosed every year, according to the Amyloidosis Foundation. Classified as a rare disease, amyloidosis often goes undiagnosed because its symptoms mimic those of more common diseases.
Millen’s symptoms (chest pain, shortness of breath) continued for six years before being diagnosed last summer. By then, the disease, which has no cure but is treatable, had affected Millen’s heart to the point that a transplant became necessary.
Next week, Millen and Pat will return to Cedar-Sinai Hospital in Los Angeles for a second round of transplant evaluation. But on Monday he happily mowed the lawn, taking frequent breaks to catch his breath.
“While I’m still up on this side,” Millen said, “I’ll enjoy everything.”
It began seven years ago, when Millen first felt chest pain while exercising. Heart tests, including a cardiac catheterization, showed nothing wrong. Millen was in good shape but felt lousy.
The symptoms grew worse over time, and Millen often couldn’t walk 50 feet without getting winded. He visited doctors for six years before finally getting the diagnosis, during a 15-minute conversation, in July at the Mayo Clinic in Jacksonville, Fla.
“I know what you have,” Millen recalled the doctor telling him, “and you’re not going to like it.”
Amyloidosis occurs when abnormal proteins called amyloids, produced in the bone marrow, build up in organs or tissue. Though there’s no cure, amyloidosis is treatable with chemotherapy (similar to multiple myeloma) to stop cell growth.
Millen initially brushed aside the diagnosis, saying he would delay treatment until after football season, which he planned to work for the Big Ten Network.
“You’ll be dead by the end of football season,” a Mayo Clinic doctor told him.
So Millen began what has turned into eight months of chemotherapy, which reduced his body’s amyloid production to manageable levels. He worked as a television analyst through treatment last fall, usually feeling strong enough by week’s end to watch pre-game film with college coaches.
Millen stopped treatment for three weeks this winter, felt his energy levels rise and regained his ability to taste food. But recently he returned to chemotherapy because his body still produces small amounts of the amyloid.
Amyloidosis is life-threatening because, since it’s difficult to diagnose, the amyloids continue accumulating in the body’s organs and inhibit their function. In Millen’s case, several specialists told him they were amazed that Millen can even walk, much less mow the lawn or build cabinets.
The Mayo Clinic doctor who made the initial diagnosis last year told Millen that, “Most people who’ve had this as long as you have come in here with a wheelchair and oxygen.”
But Millen’s case of amyloidosis advanced to the point of causing heart failure that eventually would require a transplant. This winter, Millen spent the week before the Super Bowl undergoing tests at the Mayo Clinic in Rochester, Minn.
Millen had told several close friends in the NFL about his condition, and a handful of them (including several team general managers) visited from nearby Minneapolis, site of Super Bowl 52. Millen left Minnesota before the game, saying he wanted to avoid too many calls and visits.
Ohio State coach Urban Meyer texts. A few weeks ago, Millen had dinner with Houston Texans (and former Penn State) coach Bill O’Brien in State College.
Football even got him over some hurdles of treatment. In Florida last year, Millen underwent a bone-marrow test overseen by a specialist originally from Detroit. They made small talk about Detroit sports, and the doctor lamented the Tigers’ difficult 2017 baseball season.
“At least they’re not as bad as the Lions were a few years ago, when they didn’t win a game,” Millen recalls the doctor saying, not realizing the patient was Lions’ president and general manager for the first three weeks of that winless 2008 season. A nurse filled in the blanks.
“I’m glad you weren’t aware,” Millen joked.
Cedars-Sinai Hospital, where Millen has visited once for evaluation, performs the most annual heart transplants in the U.S. If that’s where he’s listed, Millen would spend at least four months in Los Angeles for the transplant and recovery. Once listed, patients could be called at any time.
In those years researching what ailed her husband, Pat Millen found amyloidosis on the internet. She didn’t think it was possible, considering the odds. Now, she hopes others affected can find more timely diagnoses.
“There are so many organs this disease attacks, but it’s not discovered until the organ has failed,” said Pat Millen, a Master Level counselor at Cornerstone Counseling Ministries in Easton. “If it can be tested sooner, if it can be caught sooner, fewer people would have to go through the organ transplants it leads to.”
Millen is sitting on a sofa at home, wearing an Oakland Raiders sweatshirt and San Francisco 49ers hat, teams with which he won Super Bowls. Above his head, resting on a window frame, is a wood sign that reads, “Never never never give up!”
Millen plays an audio clip of Genesis 30 for his weekly Bible study group, which includes a rotating group of friends, some of them Lehigh Valley wrestling coaches. They talk wrestling, analyze the passage, then talk wrestling some more.
“I love football,” Millen said. “Not as much as wrestling, but I love football.”
Crowell, for whom Millen is making the kitchen-island countertop, has been part of this study group for several years. They room together on annual trips to the NCAA wrestling championships. Despite the fierce cold, they attended this year’s tournament in Cleveland.
“So Matt’s one of those interesting guys,” Crowell said. “He has this reputation of being a tough guy, but he has an incredible depth to him that some people might not understand. He knows the Bible extremely well. He knows there’s a wisdom in the Bible that can, and should, help you in every aspect of your life.”
Millen is making the countertop for Crowell of white oak. His workshop is outfitted on a scale of some professional building companies, with a few industrial-grade tools he acquired from Bethlehem Steel. He also bought a disc sander with a motor from 1951 that still hums.
“It’s unbelievable,” Millen said. “Looks like the atom bomb.”
Pat Millen bought her husband his first set of tools when they moved to Oakland in 1980. Millen began building cabinets in Los Angeles, where the Raiders moved in 1982.
“That’s where I go to get all this crap off my mind,” he said.
Millen keeps the negative thoughts brief and fleeting, choosing instead to live in the rich world he built, primarily his family.
Matthew Jr. is a pastor and lawyer in the Lehigh Valley. Marcus, who served in the Army’s 10th Mountain Division and 4th Infantry Division, is an instructor at the U.S. Military Academy. Michalyn works in real estate and insurance in Nashville. Marianne lives in Houston, where she is pursuing a Ph.D in psychology.
“I’ve always lived this way,” Millen said. “You take what you get. I look over my life, and it’s been a storybook. I have an awesome family, a phenomenal wife, and you can’t ask for more.
“So you’re not supposed to take the good with the bad? When a bump comes up in the road, you deal with it. It’s ridiculous to feel sorry for yourself. I’m thankful for what I have, and I’ll take what I get.”
WHAT IS AMYLOIDOSIS?
Amyloidosis is a rare disease that occurs when abnormal proteins called amyloids, which are produced in bone marrow, build up in organs or tissue.
Primary amyloidosis, the most common form of the disease, can affect the heart, lungs, intestines or nervous system. Secondary amyloidosis most often affects the kidneys, spleen, liver or intestines.
Though there is no cure, amyloidosis is treated with chemotherapy to stop the growth of abnormal cells that produce amyloid.
Amyloidosis affects fewer than 4,000 people per year, according to Cedars-Sinai. Most people diagnosed with AL Amyloidosis, the most common type, are between the ages of 60-70. Nearly 70 percent are men.
Sources: Mayo Clinic and Cedars-Sinai