The Dave Matthews Band T-shirt that Rob Masters wears said it all: “Shine your light while you still got one.”

While he doesn’t intend it to be a morbid message, Rob is serious about the meaning. Though he’s only 46, he has survived — and thrived — despite three bouts of two types of cancer, dozens of surgeries, a complicated liver transplant and several chronic illnesses since he was a preteen.

“I have the chance now to tell my story, even in the face of these crazy things that I have had to overcome. My message is there is a life to be lived: Fight the fight, win the battle and go on with your life.”

Rob is a seasoned survivor of illness. In 1991 at the age of 12, he was diagnosed with ulcerative colitis (UC), a type of chronic inflammatory bowel disease that causes inflammation (or ulcers) in parts of the digestive tract.

He grew up in Minnesota and by the time he was 16, he was a youth ambassador for the state chapter of the Crohn’s & Colitis Foundation of America. If there was a young patient struggling with the disease, Rob would get a call.

“I was the go-to person for young people like me suffering from UC; if they needed some hope, I was there to tell them that that they would be OK. It helped me to give back to people going through similar circumstances.”

It would be the start of a role he never aspired to, but performed nonetheless, as a mentor and source of education and inspiration to fellow patients who like him, face critical and sometimes debilitating diseases.

His mother, a nurse, made sure he was on the proper medications to manage his illness, so it didn’t consume his teen years. He lived with the ups and downs of UC, controlling it with medications.

With the support of his family, good physicians and his Midwest upbringing, Rob developed a pragmatic, no-nonsense approach to maneuvering through the ups and downs of health problems that would plague him for decades. 

“You just learn,” said the Wheat Ridge resident. “You just find a way to live with it and move on. That’s how it’s been through my whole health journey. I have never been one to freak out and say, ‘Oh no, my life is over.’ You put together your team, you figure out your plan, and you go and fight like hell.”

A love of hockey brings him to Colorado

With a 2001 degree in sports management from the University of Minnesota, Rob’s career brought him west. He was a student manager of the Minnesota Golden Gophers’ hockey team and traveled around the country for games. When his team came to Colorado, the mountains were waiting, the weather was beautiful, and the sun was shining.

He knew it was the place for him.

A few months before Rob graduated, he became the head manager (the youngest one in the league at the time) of the hockey team for Colorado College and moved to Colorado Springs. His duties included keeping track of equipment, making travel arrangements and overseeing budget operations.

During his five years there, he met his wife Heather, who was the assistant soccer coach. He also became interested in the distilling industry. He had most of the summer off, and he would hang out at friend’s vodka distillery. He learned the ins and outs of the science behind creating handcrafted spirits, while lending a hand to the business side as well.

After a season working with the Chicago Blackhawks as manager of their minor league team, he returned to Colorado, and when the chance to open a distillery in Denver arose in 2006, he jumped at the chance.

“It was a really good lesson in how not to run a company,” Rob said. “It was a bit of a disaster, but I learned a lot and eventually became a consultant, working on various projects.”

One of those initiatives included Rob’s Mountain Gin, which attracted a cult following before he eventually sold it another distillery.

During the next few years, Rob and Heather, now married, were living in Monument while he traveled around the country helping build distilleries and developing products.

“Distilling is a fun meld of art and science, and I do well in both worlds. I’m very type A and logical, but on the artsy side is my mom, who is a quilter, my grandma, a painter, and my dad was an art major. So, that has always been in my life. I love to teach people about what we’re doing and why we’re doing it.”

Although Rob was accustomed to negotiating his life with various medical setbacks, he would be tested in the coming years like never before as his business life took off and his family grew.

A routine colonoscopy triggers a complicated medical odyssey with the discovery of colon cancer and autoimmune disorders

At an annual colonoscopy in 2013, doctors found a polyp. A subsequent biopsy led to a meeting with physicians who suspected the 34-year-old Rob had colon cancer.

“I met with the surgeon, and she said we know we need to pull out a certain amount of your colon, but we don’t know how much until we operate. I went under knowing part of my colon, or all of it, would be gone. I woke up with my whole colon having been removed and a total colectomy.”

Rob was lucky in that his stage 1 colon cancer was caught early before it had spread. Surgeons had removed his entire colon, which is the biggest portion of the large bowel. Rob avoided chemotherapy but did endure three surgeries over six months, for construction of a ‘’J-pouch,’’ also known as an ileal pouch anal-anastomosis.

Through a J-pouch creation, the colon and rectum are removed, and the end of the small intestine is used to form a pouch shaped like a J to collect waste and allow waste to flow naturally.

Without a colon, Rob no longer endured the effects of ulcerative colitis, yet he was still suffering. A year after his surgery, doctors diagnosed him with autoimmune disorders including Crohn’s disease, psoriatic arthritis and psoriasis.

The following year, he and Heather’s son, Henrik, was born and a couple years later in 2017 he opened The Family Jones Distillery and Spirit House with a group of partners and investors. It was during this busy time when undergoing routine blood work that results showed his liver enzymes creeping higher than normal.

He would eventually be diagnosed with primary sclerosing cholangitis (PSC). PSC is a rare, progressive and chronic liver condition when the bile ducts inside and outside of the liver become inflamed, scarred and eventually narrow and become blocked.

The disease gained attention when NFL running back legend Walter Payton was diagnosed with it in 1999. The disease can be managed with medication, but it has no cure, and in about 10% of cases, it leads to bile duct cancer, which killed Payton that same year.

To help him battle PSC, Rob connected with UCHealth hepatology transplant specialist, Dr. Lisa Forman.

Forman suspects that Rob’s PSC was, in part, brought about by the inflammatory bowel diseases he had experienced since he was an adolescent.

At 41, Rob began conversations with family and friends about whether they would consider being a potential liver donor for a transplant if he were to develop liver failure.

But as he was grappling with that possibility, Forman spotted something concerning a year later during a test she had ordered. 

Rob faces a type of rare bile duct cancer not once, but twice

Called an MRCP, for magnetic resonance cholangiopancreatography, the device is a special MRI which examines bile ducts and the pancreatic system. While Forman used it on Rob, she found cholangiocarcinoma, a rare and aggressive cancer in the bile ducts in his liver.

Bile is produced in the liver and carried by ducts to the small intestine to help break down fats in food.

“I was very lucky Forman caught it early. Had she not been diligent in testing me…,” Rob’s voice trailed off. “Cholangiocarcinoma is bad and usually not found until it’s too late.”

Forman, also a University of Colorado School of Medicine professor of gastroenterology, said she knew Rob was at risk for cholangiocarcinoma because of his history of PSC which is highly associated with the development of cholangiocarcinoma .

“He’s absolutely amazing and inspiring to all of us. He’s been through colon cancer, a chronic bowel condition and a liver condition and he always had the best attitude. He was always upbeat and never felt sorry for himself,” she said.

He had a surgical resection of his liver, during which 40% of the section containing the cancer was removed. The liver, which comprises four lobes, has an amazing ability to quickly regenerate when part of it is removed.

“He’s been through a lot, and he’s always had a good attitude and never complained. He’s such a fighter. He put his head down and just worked his way through it,” said Dr. James Pomposelli, transplant surgeon at the UCHealth Transplant Center on the Anschutz Campus who performed Rob’s liver resection.

Despite the resection and Rob subsequently undergoing chemotherapy, another area of his liver where a different duct was located would eventually develop the same rare cancer. With a damaged liver that had undergone two cancer surgeries, he now needed a liver transplant.

But would he be up for the grueling regiment to qualify?

Rob is determined to get a liver transplant and undergoes tough chemo and radiation treatments to become eligible; meanwhile his wife has a fight of her own

The liver performs many critical functions, including filtering blood of toxins and wastes. It helps support our immunity, metabolism and digestion to create the nutrients our body needs.

Most people with cholangiocarcinoma do not qualify for liver transplant. Rob, however, did in fact meet transplant criteria and under the Mayo protocol.

Under the protocol, Rob underwent a repeating schedule of high-dose radiation for several weeks, followed by chemotherapy. He withstood this punishing treatment loop from August 2023 through February 2024, during which his name was placed on the transplant registry.

During this time period, he also began struggling with infections of the bile ducts and was on various medications, and in and out of the hospital much of 2022, as he underwent 11 bile duct procedures, along with getting a stent to clean out blockage and improve bile flow.

He needed a gamechanger.

But as if Rob wasn’t dealing with more than enough illness for one family, they were dealt another tough blow when Heather was diagnosed with breast cancer that August and underwent a double mastectomy in the fall. While she was going through chemo and radiation in winter 2023-2024, Rob was finishing up his own treatments and waiting for a transplant.

“It was a really rough time. We were both fighting and battling for our health together. We had an amazing support group of family, friends and coworkers who helped us get through it. But yeah, all of 2023 pretty much sucked.”

Finally, after two false alarms that an organ was available, the third time was the charm when Rob got a call in February 2024 that a suitable liver was waiting for him. As with most of his medical issues, this would be a difficult operation, and he would undergo another rare and complicated procedure the next day.

What is a Whipple procedure and why did Rob need one?

The many years of Rob’s medical maladies had caused cirrhosis, or severe fibrosis (scarring) of his liver and surrounding organs. A “Whipple procedure” was necessary during his liver transplant, and would be his best chance for a full recovery because he had precancerous cells in the bile ducts that go through the head of the pancreas.

“Basically, when you develop bile duct cancer in the liver within a setting of cirrhosis, you have a lot of tissue at risk for a new cancer to develop. So we decided that the combined liver transplant Whipple procedure was the safest strategy to prevent that from happening,” said Pomposelli, also a professor of surgery at the University of Colorado School of Medicine. 

During the combined liver transplant Whipple procedure, Pomposelli removed the entire liver along with the head or top of the pancreas, as well as the gallbladder and part of the small intestine. The Whipple procedure has been in the news lately as former NFL Hall of Famer and ESPN analyst Randy Moss announced he had the operation in his battle against bile duct cancer.

Rob would need all the stamina and grit he had deployed during the decades he spent fighting back against disease and illness. He would spend three weeks in the hospital, have many follow-up appointments and lose 45 pounds as he recovered.

Nearly a year later, he still struggles with fatigue and digesting food. He is on several anti-rejection medications for his liver and doctors, while hopeful, will continue to monitor for cancer reoccurrence.

“I feel OK … I am surviving. I’m trying to get back to work, I’m trying to get back to it.”

Health hurdles have tested Rob and his wife, but he remains positive about their future

Rob has endured more than a lifetime of illnesses but has tried not to let his diseases define him, something his doctors and friends have always admired.

“I’m hoping he’s over the worst of it now, and that he can lead a normal and healthy life; that he can enjoy his wife and his son and go back to being the amazing person that he is and having the amazing life that he’s had,” Forman said.

As a patient needing multiple points of care from a highly specialized cadre of UCHealth doctors from various disciplines, she and others are committed to a team approach to keep him healthy.

Dr. Trevor Nydam, new interim head of the UCHealth Transplant Center and co-surgeon with Pomposelli in perfroming the complicated procedure, added: “Rob is an amazing guy who has endured much as he’s made his way through the many treatments and operations. It is good to see him doing so well. His desire and willingness to give back to the system is admirable.”

His best friend Nick Touch said Rob has the ability to not just overcome his huge health obstacles, but everything else that has tried to get in the way of living a full life with his family and friends and giving his all to an industry he loves.

“So much that he has been through would have broken a lot of people, but that hasn’t happened with Rob. Nothing stops him. He looks at life and the issues thrown at him and not gotten down about them. He’s one of the most generous, down-to-earth and compassionate people around.”

It’s a new year, and Rob at 46, looks at the world cancer free with a new liver.

He is focused on his family and his business, where the public can enjoy local-crafted spirits, and he relishes working with people throughout the industry and around the country.

He credits his work colleagues, as well as his wife, son, extended family and friends, for pitching in while he and Heather underwent their lengthy treatment and dual recoveries.

After having spent much of his life fighting against the diseases that have ravaged his own body, he is committed to offering support and solace to others going through similar trials, and he sits on the board for the Rocky Mountain Chapter of the Crohn’s & Colitis Foundation.

“I want others to know how to fight, how important it is to put together a support system, how there’s life after cancer, and to live your life while you’ve got one. Don’t look back and don’t blame yourself. You have to fight like hell. That’s all you can do.”