‘They only gave me 6 to 9 months’
Tricia Johnson thought her stomach pain was probably caused by stress, or exercise, or maybe her gall bladder. “Pancreatic cancer” were the words that spilled from her telephone. (Chris Clark | Spectrum Health Beat)
Alexandra Bengel, PA-C, checks the incision where a hockey puck-sized pump was implanted in Tricia’s abdomen. The pump delivers chemotherapy directly to her liver. (Chris Clark | Spectrum Health Beat)
Tricia’s treatment using the HAI pump is part of a clinical trial directed by Spectrum Health surgical oncologist G. Paul Wright, MD. The trial is the first of its kind in the United States. (Chris Clark | Spectrum Health Beat)
Tricia’s sons Jesse, left, and Tyler had a special blanket made to support their mom as she underwent aggressive chemotherapy with four different medicines twice a month. (Chris Clark | Spectrum Health Beat)
Tricia said that Goliath, the family’s 200-pound English Mastiff, sensed she may be very sick, even before the diagnosis. He became more protective of her and seemed worried. (Chris Clark | Spectrum Health Beat)
“As part of the trial we track tumor response using a blood test that is specific to pancreatic cancer,” Dr. Wright said, adding that results are showing improvement. (Chris Clark | Spectrum Health Beat)
A tablet monitors the pump that is implanted in Tricia. The pump delivers chemotherapy for two weeks, and then the pump is filled with heparin for two weeks. And then more chemo. (Chris Clark | Spectrum Health Beat)
“Realistically, she didn’t have six months,” Tricia’s husband, Shane, said. “That white flag is pretty easy to throw in the air. That’s not an option now. Everything is very positive.” (Chris Clark | Spectrum Health Beat)
“Eventually, this disease is going to get me,” Tricia said, “but if I can help others have better quality of life, that makes me feel wonderful.” (Chris Clark | Spectrum Health Beat)
Late last summer, Tricia Johnson experienced subtle stomachaches.
Job stress, she thought. Or maybe tight muscles from starting a new workout routine.
“It was kind of constant, but not like pain,” Johnson said. “More like pressure would be the word for it. I kind of blew it off.”
But then, her stools started to change color. And change consistency.
She visited her primary care doctor, who ordered blood work.
“Everything came back pretty OK,” Johnson said. “My white blood count was a little down, but nothing she was concerned about. She chalked it up to my having irritable bowel syndrome. She gave me some anti-cramping pills. I took those for 10 days, but didn’t see any change.”
She returned for a CT scan on Aug. 30.
“I was barely home and I was getting a phone call from the physician,” Johnson said. “He said ‘I have bad news for you.’ My instinct was I thought it was my gall bladder. So when he said, ‘I have bad news for you,’ I thought, ‘Yeah, it’s my gall bladder, I’m going to need surgery.’”
That would have been welcome news.
Instead of hearing about gallbladder issues, she heard unthinkable words spill from her telephone earpiece: “You have pancreatic cancer.”
Johnson sat down on her bed. Shock flooded her soul.
“He must have set me up with an oncologist,” she said. “I just don’t remember much of that day. My husband (Shane) was working in Detroit. I had to call him. He couldn’t believe it. We stayed on the phone with each other that whole three-hour drive home. He even called the doctor to make sure I wasn’t hearing things wrong.”
The first week of September, Johnson met with an oncologist at the Spectrum Health Lemmen-Holton Cancer Pavilion to review her scans and biopsies.
There the news got even worse.
She had Stage 4 cancer in her pancreas, liver, lymph nodes and some of her vessels. And the cancer was too advanced for surgery.
“She told me it was the worst kind,” Johnson said.
Johnson underwent aggressive chemotherapy with four different medicines twice a month. Each session would take between five and six hours. She would return home with a pump that would continue to deliver chemo drugs.
“They told me it was going to be like dropping a hand grenade in my body,” she said. “They only gave me 6 to 9 months to live, depending on how I handled treatment.”
Johnson wasn’t about to let cancer rule her future. She started researching and studying, trying to learn everything she could to combat the criminal in her cells, the one trying to steal her health and life as she knew it.
“I learned we needed to do our part to take care of the rest of me and we changed my diet,” Johnson said. “We were typical Western Americans that ate processed foods, sugars and red meat.
“After reading a lot of different things, we changed to whole foods,” she said. “We still do some chicken and fish and learned about the top 10 cancer-fighting foods. I really do attribute that to helping me get through chemotherapy and keeping me healthy. If people don’t know I have cancer, they wouldn’t know. I don’t look like a cancer patient at all.”
Johnson concluded chemotherapy at the end of January. Scans showed the tumor had shrunk.
Reason for hope
Then, came the most encouraging news of all.
Spectrum Health surgical oncologist G. Paul Wright, MD, was starting a new clinical trial for hepatic artery infusional chemotherapy to the liver. The trial is the first of its kind in the United States and only a few places around the country have an HAI pump program.
He inserted the pump in late February. During this surgery, he and his partner, fellow surgical oncologist Mathew Chung, MD, performed nanoknife ablation of the tumor in the pancreas. This uses high voltage electrical pulses to shock the tumor while preserving the surrounding structures.
“It’s pumping chemo directly to my liver,” Johnson said. “So far so good with the pump. I haven’t had any side effects. Before with a port, by the time the chemo got to my liver, it was only 25 percent effective. Now, it’s 400 times the amount I would be getting through regular chemo.”
Dr. Wright said the hope is to increase longevity for patients who respond to what he called a “very aggressive” treatment.
“One of my primary career interests is the delivery of regional chemotherapy to isolated areas of the body,” Dr. Wright said. “This targets affected areas while minimizing toxicity that the rest of the body experiences.”
The pump in her abdomen, about the size of a hockey puck, slowly delivers high-dose chemotherapy to the liver over the course of two weeks.
“We then empty the chemotherapy out and take a two-week break before the next pump chemotherapy treatment,” Dr. Wright said. “These treatments are combined with regular chemotherapy through the standard port.”
So far, the results are astounding.
“As part of the trial we track tumor response using a blood test that is specific to pancreatic cancer,” Dr. Wright said. “So far, early into her treatment, those numbers have already improved by 90% from when she was first diagnosed.”
Johnson and her husband recently visited Lemmen-Holton to have the chemotherapy removed and heparin placed in the pump, as a two-week placeholder before the next treatment.
Clinical research nurse Marianne Morrissey told Johnson she’s looking great.
“We’re very hopeful,” Morrissey said. “And so far, you’ve been a model first patient, so we like it. The tumor shrank. Whatever you’re doing, keep doing it because it’s working.”
Johnson announced that she’s ready to go back to work in her role as a restaurant manager at Brann’s in Grandville.
“Your asking is a good sign that you’re ready,” Morrissey told her.
Shane, a martial arts instructor, said his wife works out three days a week.
“I help people with health and fitness and training,” Shane said. “I’ve taken and applied all of that to Tricia, as if she’s one of my fighters. Every day we work at this. Realistically, she didn’t have six months. It was that bad. That white flag is pretty easy to throw in the air. That’s not an option now. Everything is very positive.”
Including Johnson’s attitude.
Although she felt scared at first to trial the “direct-to-the-liver” chemotherapy pump, she remained hopeful.
“It made me feel so comfortable because Dr. Wright was so passionate about it,” Johnson said. “I look at it like, ‘What do I have to lose?’ I’ll do anything I can to be around longer.”
The plan is for Johnson to undergo the clinical trial pump treatments for six months, with a CT scan after three months.
“I think that’s why I’m still here,” she said. “There’s a reason I was chosen to do this.
“Number one, it’s to help with medical research. Number two, I want to give back,” she said. “I can’t wait until I can volunteer at the hospital. Eventually, this disease is going to get me, but if I can help others have better quality of life, that makes me feel wonderful. There are so many people who have touched me, prayed for me, and done amazing things including my family members.”