The young woman received an ominous diagnosis back in 2013.
Marybeth Hoffman had just turned 40. She looked great and felt pretty well too.
“I had never been sick a day in my life. I’d never spent a night in the hospital since the day I was born,” she said.
But, some subtle symptoms, powerful intuition and years of work synthesizing and analyzing data led her to believe she had pancreatic cancer. It’s one of the most deadly types since cancerous tumors can lurk undetected for years and grow without obvious symptoms.
Sadly, Marybeth’s hunch was right.
Her team hoped to be able to remove her cancerous tumor. But, her surgeon, Dr. Richard Schulick, found the cancer already had spread to her liver, meaning it had metastasized. Schulick had to halt the surgery. Cutting out the original tumor wouldn’t do any good since cancer cells already were growing elsewhere in her body. Marybeth now had stage IV cancer and a very poor prognosis.
“At that point, the chances of being alive a year later were about 1%. Most people would be dead in three to six months,” Marybeth said. “I knew the odds, but I wasn’t going to let my family down. I was going to fight with all I had.”
Remarkably, that was 6 ½ years ago.
Marybeth jokes that she’s a “1 percenter,” alas, not when it comes to riches, but most definitely, when it comes to fighting pancreatic cancer.
Schulick calls Marybeth a “super-responder” because she handled her chemotherapy treatments so well.
In a rare move, Schulick was able to do a second surgery months later and remove Marybeth’s tumor. She credits her Colorado team with saving her life.
She recently got to share her message of resiliency with the world.
During an August trip with her niece and nephew to Los Angeles, Marybeth scored tickets for “The Price is Right,” the longest-running game show in U.S. history. She wore a T-shirt that said “132 rounds of chemo and still fighting.” Her episode aired on November 5 on CBS stations around the country. Host Drew Carey asked Marybeth about her cancer, she delivered a message of hope.
“If you’re diagnosed with stage IV cancer, it doesn’t have to be a death sentence. You can fight,” Marybeth said.
College athlete, valedictorian and CIA recruit
If anyone had the determination and detective skills to flag her own cancer, it was Marybeth.
She was a talented athlete as a kid, who excelled at three sports in high school: softball, basketball and field hockey. She earned both athletic and academic scholarships to college, played D1 softball and graduated as the valedictorian of her class at Quinnipiac University in Connecticut. Her academic achievements were all the more remarkable since neither of her parents had gone to college.
Marybeth went straight into a Ph.D. program in psychology. She taught psychology and continued her research in health and social psychology, authoring her first paper for a scientific journal at just 27.
After the 9/11 tragedy, she wanted to use her analytical skills to serve her country and applied to work for the CIA. Recruiters from the clandestine service wanted to hire her to work as a covert agent.
While Marybeth was excited about the challenging work, which also appealed to her sense of adventure, she decided she did not want to keep her life a secret from her large, extended family and many close friends. Ultimately, she accepted a job as an analyst with the Department of Defense in Colorado.
“I really enjoyed my work. I traveled all over the world — Korea, Japan, Europe, and even had deployments to the Middle East,” Marybeth said.
She got to solve challenging problems, gathering information, analyzing data, diagnosing root causes and working with teams on solutions.
She also found love. She and her girlfriend, Terry, met on Veterans Day in 2003. For Marybeth, it was love at first sight. They had been together for 10 years and had bought their dream home in Denver when the cancer diagnosis hit.
“I felt like I had made it. I had traveled the world and I had been to every state. We had everything we needed. We loved our family, friends and amazing pets. We loved our house,” said Marybeth, who had grown up in an economically depressed, working class area of Long Island.
Following the clues to a tough diagnosis
Marybeth’s background analyzing complex situations came in handy when she noticed some strange physical symptoms. Since age 25, Marybeth had dealt with what appeared to be minor digestive issues like constipation. Then, in 2012, she’d noticed some black, tar-like stools, which could indicate an ulcer. Like many athletes, she had some aches and pains from many years of sports, and took a lot of ibuprofen, so it made sense that she might have an ulcer.
She also had torn a tendon in her elbow and had surgery to repair it in January of 2013. Prohibited from even light activity, Marybeth noticed her body seemed to be having trouble processing sugar. In the past, when she had felt a “rush of sugar in her bloodstream,” she would jump on an elliptical or go for a run.
“When I couldn’t exercise, this sugar problem hit me like a ton of bricks,” she said.
Type 2 diabetes runs on her dad’s side of the family. So, Marybeth visited her primary care doctor, who ran some tests. The only result that was out of range was a slightly elevated level for blood glucose. Her doctor thought it was a fluke, but Marybeth wasn’t convinced. She asked for more tests, including an A1c, which measures average fasting glucose levels over time. Again, all tests came back normal, except the A1c; it was slightly elevated. Her doctor referred her to specialists, who conducted more tests. Marybeth also started monitoring her own blood sugar levels with a $10 glucose meter.
She tested her blood sugar in the morning and randomly during the day. She observed that she would wake up with elevated blood sugar, then her levels would dip low during the day.
Marybeth was used to sifting through data and studies at work and pondered what her own results were telling her.
“I started to read some medical research and observed an inexplicable relationship between otherwise normal lab tests,” she said.
Insulin and glucagon are hormones that the pancreas produces. They play a critical role in keeping blood glucose levels within a healthy range.
When the body does not convert enough glucose, blood sugar levels remain high. Insulin helps the cells absorb glucose, reducing blood sugar and providing the cells with glucose for energy. When blood sugar levels are too low, the pancreas releases glucagon. Glucagon instructs the liver to release stored glucose, which causes blood sugar to rise.
“It then occurred to me that when you go to bed at night, the liver takes over and releases glucose into the bloodstream. It takes its cue on how much to release from the pancreas,” Marybeth said.
She started to wonder if she could have a tumor in her pancreas.
Since she looked so healthy, her doctors doubted anything serious was wrong.
Marybeth later realized that her appearance might have deceived them.
“There’s a bias in health care. When you look healthy, people don’t believe you can be sick. My rosy cheeks could have cost me my life.”
Global experts around the corner
Marybeth celebrated her 40th birthday on April 20 with Terry on a camping trip. Normally, she avoided eating a lot of fatty foods. But, she indulged in rich meals on the trip. When she returned, she noticed what appeared to be fat in her stools. That’s a condition known as steatorrhea.
Marybeth called her gastrointestinal doctor and arranged for an endoscopy. Everything looked OK, but lab work later showed a severe insufficiency of fecal elastase, an enzyme that the pancreas is supposed to produce. A normal level for an adult would be greater than 200 and sometimes 500 or more. Marybeth’s results came back at 76.
She honed in on a very scary diagnosis.
“I was convinced I had pancreatic cancer and I don’t know how to get anyone to believe me,” she said.
Finally, on Mother’s Day in 2013, Marybeth went to an ER near her home. She knew a CT scan would show a tumor if she had one. Doctors there tried to reassure her that she was fine, but when the scans came back, they revealed a mass in Marybeth’s pancreas.
“And with that, my life changed in a second.”
The next day, not sure what to do, she went in to see her regular doctors. They were crestfallen that they had missed her cancer.
Marybeth’s friends jumped into action to help her. A friend, who is a doctor, consulted with a colleague at Stanford University about the best specialists on pancreatic cancer in the country. She told Marybeth that a world-renowned team worked at the University of Colorado Hospital, just four miles from Marybeth’s home. Dr. Schulick had come to Colorado only a year earlier from Johns Hopkins in Maryland and an interdisciplinary team of pros had come with him.
Marybeth called and the team squeezed her in for a biopsy the next day. At the time, she was one of the youngest pancreatic cancer patients the team had ever seen. She saw the entire team later in May, and Schulick agreed to do surgery on May 31.
Marybeth had high hopes. But, when her anesthesia wore off and she learned Schulick had had to cut the surgery short because the cancer had already spread, she worried about Terry and her mom.
“You don’t think about yourself. You think about your family,” she said.
While not offering false hope, Schulick explained that the team was going to start Marybeth immediately on intensive chemotherapy to see if the medication would attack her cancer.
“We’re going to see you back here in six months,” he said.
In early June, Marybeth learned she was dealing with multiple areas of cancer, including spots on her liver and her lymph nodes. That meant her cancer was even worse – stage IVB – and the possibility that Schulick ever could cut out her original tumor grew even more remote.
Still, the fight was on.
And so began Marybeth’s 132 rounds of chemo.
Fighting pancreatic cancer: A ‘super-responder’
Pancreatic cancer is especially challenging and deadly because there’s no screening test for it.
“For breast cancer, we’ve got mammograms. For colon cancer, we’ve got colonoscopies. For melanoma, we can do skin checks,” Schulick said.
“But there’s no way to find pancreatic cancer until you find it. And by then, it’s often too late. Pancreatic is the No. 3 cancer killer in the U.S. behind lung cancer and colorectal cancer.”
“There are risk factors for pancreatic cancer like smoking and obesity. Age is a risk factor, as well, along with having a family member with pancreatic cancer,” Schulick said.
Marybeth didn’t fit into any of those categories. She had grown up near Brookhaven National Lab in New York. The lab was one of the places in the country where nuclear scientists did research following World War II. Some chemicals used at the lab are now labeled carcinogens and Marybeth wonders if water she drank as a kid might have been contaminated and increased her cancer risk.
Her athleticism, on the other hand, was a big help.
“Whenever someone goes into treatment healthy, we can treat them with a tougher and more effective regimen,” Schulick said. “It’s always better to go in in good shape. If you’re frail, you can’t get much chemo.”
Marybeth tolerated very high doses of chemotherapy and by the end of 2013, scans showed that the tumor in her pancreas had shrunk in half.
Schulick, who describes himself as conservative when it comes to using surgery with metastatic pancreatic cancer, made the rare decision to do a second surgery.
“In the proper situation, I’m willing to be very aggressive. I typically will vet my decision with the 30 pancreas experts who work with me in our multidisciplinary group. It’s not something I do very often. You treat everyone and you follow them and see who responds. There are super-responders. That’s what I would call Marybeth,” he said.
Schulick said it’s incredibly helpful that 30 experts, who are part of the multidisciplinary team, meet and make decisions together.
“It’s surgeons, medical oncologists, pathologists, interventional radiologists, pain specialists, gastroenterologists all reviewing the scans and deciding, ‘Should we re-explore? Should we take a look?’” Schulick said.
In Marybeth’s case, the answer was yes, and in early January of 2014, Schulick did a second surgery. This time, he saw no sign of the cancer metastases, so he removed Marybeth’s original tumor.
‘Extremely unusual’ to get 132 rounds of chemo
“She’s done extremely well,” Schulick said. “Marybeth is one of those rare patients – who are getting more common – who have a great response to chemotherapy.”
Even, so, it’s extremely unusual for any patient to get 132 rounds of chemo, said Cheryl Meguid, a nurse practitioner who runs the pancreatic cancer clinic and moved with Schulick and the team from Johns Hopkins to Colorado.
“That’s the most I’ve ever heard of. This is a very aggressive type of chemo. It’s very hard to tolerate. It’s incredible. She’s a miracle,” Meguid said.
Both Meguid and Schulick said Marybeth’s excellent response paved a path for other patients. Chemotherapy medications continue to improve, along with the understanding of how best to use them. Pancreatic cancer remains quite deadly, but some other patients, like Marybeth, are beating the odds.
“I’ve been doing this for three decades, and in the last 10 years, I’ve seen more people completely respond. It’s a game changer,” Schulick said.
The blessings of being alive
After her diagnosis, Marybeth was showered with love. There were so many bouquets that the house sometimes looked like a florist’s shop and countless heartfelt messages strengthened her and boosted her will to fight. Old friends and teachers unexpectedly reached out to tell her what she had meant to them.
“It’s like being at your own funeral, except I’m still alive to enjoy it,” she joked. “A terminal illness has shown me it’s better to have lived for your eulogy than your resume.”
When Marybeth’s mother, Virginia, learned how seriously ill her daughter was, she immediately put her life in Connecticut on hold and moved to Denver, time that Marybeth treasured.
“She was a great companion. She has a tremendous sense of humor and brought me much laughter during the hardest days of my treatment and recovery,” Marybeth said. “I never would have gotten to know my mother again in this way had I not been diagnosed with this cancer.”
Marybeth and Terry also raced to get married. They had just won the right to marry in June of 2013 after the U.S. Supreme Court invalidated the Defense of Marriage Act. But, Colorado hadn’t yet legalized same-sex marriage, so later in the summer, Marybeth’s mom drove with the couple to the closest state where they could marry, Iowa, and they exchanged vows in a simple courthouse wedding. Both women were in tears as they pledged to love each other “in sickness and in health.”
Later that fall, when Marybeth and Terry came to New York for Thanksgiving, Marybeth’s extended family threw a wedding reception and surprised the couple by donning matching, purple T-shirts that said, “Team Marybeth. Crush Cancer.”
Even the babies had tiny T-shirts. Then everyone joined together and sang, “We are family.”
“For all these years, I’ve never felt depressed, I attribute that to my family, my support system, my faith in God,” said Marybeth.
Terry also provided unrelenting support.
“She was my confidant, my biggest cheerleader,” Marybeth said. “She stuck by me in sickness and in health.”
Enduring the chemo treatments was difficult. Many patients can’t handle the full dose. But Marybeth was adamant that she could endure maximum levels of chemo and her doctors supported her. To cope with side effects, she used alternative therapies like acupuncture, Reiki and yoga, while working with a naturopath who recommended vitamins and supplements.
Whenever she was feeling well enough, Marybeth went on amazing trips with her wife, family and friends.
They visited beautiful spots in Colorado, like Steamboat and Telluride, and took trips to far-flung places like Dubai, along with a cruise through the Straits of Yemen and the Suez Canal.
“I rode dune buggies in the sand, went four-wheeling and hot air ballooning and did a helicopter ride up over the world island,” Marybeth said.
She also went to Oman, Cyprus, Turkey, Israel. Marybeth got to bathe in the River Jordan, made famous by John the Baptist. And she received a blessing from a priest in the same church where Jesus prayed the night before his crucifixion.
Other trips took her to Vietnam, Cambodia and Thailand, along with a religious pilgrimage to Bosnia.
Marybeth’s motto is to “live, explore, be curious and be unafraid.”
“My favorite thing is to drop into a spot I don’t know,” she said.
Marybeth has other countries on her bucket list.
“I would love to go on a safari in Africa and see the pyramids in Egypt.”
The gift of time with family
Of course, there have been tough times as well.
During one particularly challenging bout with pneumonia that almost killed her, Marybeth and Terry decided to sell their home and move to Connecticut to be close to family. (While Marybeth loved her job, she also had to take a medical retirement.)
Marybeth is very close to her sister Bernadette, who is one year older, and her brother Rob, who is two years younger. The illness and the distance were hard on all of them and Marybeth didn’t want to keep their mother far from her grandchildren.
She regretted moving away from her Colorado medical team, but continues to keep in touch with them, while getting treatments in Connecticut and New York these days.
The extra time with family has been the best gift of all.
“I’ve gotten to spend time with my niece and nephew. I’ve gotten to see two new nephews born,” Marybeth said.
She got to coach sports teams for her sister’s two children, Faith, who is now 14, and Joey, 13. She got to see her brother’s sons learn to walk and celebrate other milestones. Theodore is now 4 and Nathaniel is 3.
Faith was diagnosed with epilepsy two years ago and credits her aunt with showing her how to cope with health challenges.
When Marybeth needs motivation to keep fighting pancreatic cancer herself, she always thinks of valuable advice she received from another member of her Colorado team, Dr. Wells Messersmith.
“He said, ‘You’ve got to keep holding out for the cavalry,’” Marybeth recalled.
In other words, with cancer, if you stay alive, you can benefit from the next wave of innovations, the “cavalry,” so to speak.
Sure enough, Marybeth has lived to see new genetic testing, personalized medicine, precision dosing and targeted radiation. While Marybeth continues to keep close tabs on her medical details, she also relishes simply being alive.
“Every day you wake up, take a deep breath, and say, ‘good morning sun,’ or ‘good-night moon,’ is a great day.”
Reach Marybeth Hoffman at DefyTerminal@gmail.com and @defyterminal on social media. She plans to share her insights for staying positive in the face of a cancer diagnosis and advice on coping with side effects from cancer treatments.