I have had a good life,”
They’re the words of someone who believes they are nearing the end.
This is exactly what Richard Berger, husband, father, grandfather and 27-year Marine Corps veteran, said to his family as they sat in a hospital room on the 11th floor of the University of Colorado Hospital on a sunny morning in late March of this year. “I have had a good life,” he continued,
“But I am really not ready to die yet.”
A SUDDEN CHANGE
Richard Berger had been active all his life so when he suddenly got sick during a ski trip in Snowmass, Colorado at the beginning of 2017, he knew something was not right.
“It all happened so fast. I just started feeling really bad. As we were walking down the street to go see a concert I just got sicker and sicker to the point where I had to run behind a truck and got physically ill,” says Richard. “I turned to Karen and said we have to get out of here.”
“Fast” is an understatement. Just two days earlier, Richard and his wife Karen had been skiing blue runs like Sneaky’s off Snowmass’s Big Burn chairlift. Now he couldn’t keep his picnic down and getting to his car just a couple blocks away was a struggle.
“I knew it was bad when I heard Richard say he felt weak,” said Karen. “We have been married for 50 years and I have never once heard him say he felt weak.”
They decided to go to a local urgent care.
“It seemed like I had a stomach flu but what caught the doctor at the urgent care off-guard was how quickly my temperature was fluctuating,” said Richard. “He simply said to me ‘you don’t have the flu’ and sent me to Glenwood Springs for more testing.”
NOT THE FLU
Later that evening, blood tests showed abnormal myeloblasts. In medical terms the suffix “-blast” is a way to label stem cells that have not yet matured into whatever cell types they will eventually become. In Richard’s case, these immature myelo-blasts should have developed into white blood cells but instead were stuck in limbo, replicating out of control. By 9:30pm that evening Richard had been diagnosed with leukemia.
“We had heard of leukemia before but didn’t know much about it,” said Richard. “It wasn’t until later that I discovered the type of leukemia I have, acute myeloid leukemia or AML, was the one of the worst types. It was then we realized what we were up against.”
After an uneasy night in Glenwood Springs the Bergers had a difficult choice to make: Should they fly home to North Carolina?
“I remember the doctor saying very clearly that if I wanted to live I should head down to the Anschutz Medical Campus in Aurora,” said Richard. “He had ordered the ambulance and was sending me to a doctor who was conducting a study for people with AML.”
When Richard arrived at the University of Colorado Hospital he was, in his own words, “as sick as a dog.” His white blood count, neutrophils, and hemoglobin levels were all next to nothing. The counts meant that the tiniest infection that would be a nuisance to anyone else would have meant a very rough road for Richard.
Over the next few days he met with a team of doctors that included CU Cancer Center investigators Daniel Pollyea, MD, MS, clinical director of Leukemia Services at the CU School of Medicine, and Jonathan Gutman, MD, clinical director of Allogeneic Stem Cell Transplantation at University of Colorado Hospital. After a few more tests, they told Richard that he was a good match for a clinical trial of a new AML therapy being tested at the Cancer Center.
“We feel like the stars truly aligned for us to have ended up at one of only 25 locations in the entire world that was doing this clinical trial,” said Karen. “If we would have chosen to get on that airplane back home to North Carolina we could be facing a much different situation.”
Richard’s treatment consisted of four, week-long rounds of chemotherapy along with a new experimental drug called vene-toclax, which was developed in part at the CU Cancer Center in a collaboration between Pollyea and Craig Jordan, PhD.
“Back in 2013 Craig published an important paper showing that leukemia stem cells over-express a protein called BCL2,” Pollyea says. “He suggested that inhibiting BCL2 might be an effective therapy to eradicate leukemia stem cells, the root cause of AML. Several companies have had various BCL2 inhibitors but venetoclax is the most specific, almost exclusively hitting BCL2 so that patients can avoid symptoms from off-target effects. Based on Craig’s work, we did a pilot study of venetoclax as a single agent in patients with relapsed AML. That worked well enough for us to design a trial combining the usual AML chemotherapy, azacitidine, with venetoclax for newly diagnosed AML patients. The results have been extraordinary. We strongly believe this is one of the most important developments in AML in many years.”
“Before my diagnosis I had faced death at least five times in hostile situations in Vietnam and other parts of the world,” Richard explains. “I told the doctors ‘let’s do what we have to do’ and that has been my mentality throughout this process.”
A “DEVIL DOG” THROUGH AND THROUGH
Richard trained this “do what we have to do” mentality during a lifetime serving the United States. He joined the Marines in 1966 at just 22 years old. At that time, he had no idea that he would be involved in multiple wars, including Vietnam and the Gulf War, or that he and his family would be moving as often as they did.
“My God, we have lived in so many places,” Richard says. “We started out in California, then moved all over including 29 Palms. Then New York, Virginia, Japan, Florida, Washington DC, Germany, Hawaii, North Carolina and part-time in Colorado.”
It was not always easy for the Bergers – Richard was away a lot (most) of the time even when he and Karen had two small children, Kelly and Charlie, at home. But they always made the best of their experiences.
“When the children were younger we lived in Okinawa, Japan. When they were older we lived in Germany and saw the Berlin Wall come down,” said Karen. “It was such a great experience for the whole family to be immersed in different cultures.”
In 1992 Richard retired from the Marine Corps and started working for Sprint as the director of Managed Network Services. Later he was named president of the McGhee Foundation, a non-profit organization in Virginia which provides a community venue for educational and cultural programs in history, horticul-ture, agriculture and the arts. He is also a volunteer firefighter in North Carolina.
“It’s been a crazy life,” Richard said. “But I would not have traded it for anything.”
A COLORADO RECOVERY
As it turns out, the unpredictable lifestyle the Bergers led ended up helping them during Richard’s treatment in Colorado.
“To be on the trial we had to commit to live in Colorado,” says Karen. “I think the doctors were shocked by how quickly we agreed but it was no big deal for us. Moving is what we do!”
After two weeks on the eleventh floor of University of Colorado Hospital, the couple ended up living in a house they rented on Airbnb just minutes away from the hospital for a month. Once they got the go-ahead from Richard’s care team, they moved up to the cabins they had been restoring near Boulder that belonged to Karen’s grandparents.
“The cabins were a great place to recover,” said Richard. “They are quiet, beautiful, and a place where it is easy to control my environment, which was important during my recovery.” Although Richard got the OK to do his blood tests in Boulder, the couple felt strongly about going to their beloved care team at Anschutz for all of his tests.
“We will happily drive down three times a week to see the people we have grown to love,” said Karen. “We truly have never experienced care like we do here.”
For Richard, the combination of the two drugs has been a life-saver. Literally.
“I have had no side-effects and take four pills once each morning,” he says. “I am getting stronger and back to normal each day. It truly is a day-and-night difference from where I was in March. I truly believe getting on the trial saved my life.”
Just a mere seven months after diagnosis, Richard is in remission.
“A couple days ago I was able to bench 100 pounds five times at the gym!” he says. “It’s not where I used to be, but it’s a lot better than where I’ve been.”
In June, Richard and Karen celebrated their 50th wedding anniversary, something that in March they were not sure they would be able to do. Recently, they were able to move back to North Carolina sooner than they thought, but they still fly out once a month to meet with Dr. Pollyea, have blood tests and refill the prescription of his life-saving study drug.
“Some people might think it’s a hassle,” said Richard. “It is absolutely the opposite. I would not want to be anywhere else.”
Richard and Karen are highly complimentary of the entire staff on the 11th floor and the BMT and Cancer Center teams.
“They were all professionals, responsive to my needs and extraordinarily helpful when I needed help the most. I am honored to go visit all of them at the hospital when we’re in town and consider them my good friends!” says Richard. “As for Drs. Pollyea, Gutman, and Jordan, they are, perhaps, three of the finest, most dedicated men I have ever encountered. They saved my life. As a Marine Colonel, now retired, I am proud to salute them!”