11/28/2023
Barbara Grathwohl participated in a pancreatic cancer study and feels “very lucky” to be alive and surrounded by positive energy.
Barbara Grathwohl, 77, was gobsmacked when she found out she had stage IV pancreatic cancer. Her husband died from pancreatic cancer in 1997. He was just shy of 60 years old.
“Cancer does not run in our family, and we have no genetic predisposition to it,” Barbara said. “I thought, ‘Wow this is crazy!’ It is just freaky.”
Getting diagnosed with pancreatic cancer
Persistent abdominal discomfort prompted Barbara to see her primary care provider.
“I am a Type A, obsessive-compulsive personality and thought I was getting an ulcer from stress,” said Barbara, who lives in Norwalk, Connecticut.
She tried antacids and diet changes to ease her stomach troubles, which worked at first. But when her abdominal pain persisted, she had a CT scan that revealed a suspicious lesion on her pancreas.
Dr. Naveen Anand, a Nuvance Health gastroenterologist, performed an endoscopic ultrasound and biopsy to investigate the lesion. He also connected Barbara with Dr. Richard Frank, a medical oncologist who subspecializes in gastrointestinal cancer. Dr. Frank is also chief of cancer research at Nuvance Health and leads pancreatic cancer research.
Barbara’s brother, a retired radiologist, accompanied her to the first appointment with Dr. Frank when he confirmed she had advanced pancreatic cancer that had spread to her lungs.
“I was so thankful to have my brother with me when I was diagnosed with pancreatic cancer. It was good to have a second pair of ears because I was in shock,” Barbara said.
“I think I might have cried, but it is a blur. I had an out-of-body experience. I felt like I was watching a movie about someone else getting the results with a voice saying, ‘This cannot be happening to you,’ ” Barbara said.
When the results set in, Barbara was overwhelmed and asked, “What should I do? What should I do?”
“I felt scared and wanted to know how long I had to live,” Barbara said.
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Treatment for pancreatic cancer
Barbara quickly found out how complicated cancer is to treat and appreciated the personalized approach to treating her cancer.
“I realized not all pancreatic cancer is the same and people can have different side effects to treatments. Dr. Frank said my care team was going to recommend the optimal treatment for me. That helped me feel better about what was happening,” Barbara said.
Together with her care team, Barbara decided chemotherapy was the best option for her. She also decided to enroll in a pancreatic cancer research study.
Nuvance Health researchers are studying whether the ketogenic (keto) diet improves outcomes for participants with advanced pancreatic cancer compared to a regular diet in combination with a triplet chemotherapy regimen (nab-paclitaxel, cisplatin and gemcitabine).
Barbara participated in the study for a little over a year. She never wavered from her diet or missed a treatment cycle.
“She was just a trooper,” said Tammy Lo, APRN, pancreatic cancer research nurse practitioner at Nuvance Health.
Barbara had chemotherapy about twice a month for 13 months at the Whittingham Cancer Center at Norwalk Hospital. Some infusions took up to six hours.
“The Whittingham Cancer Center had a warm and welcoming atmosphere. Everyone constantly wished me well and celebrated good news with me,” Barbara said. “Good news reaffirmed my decision to do what was needed and continue to participate in pancreatic research for the future.”
“Right now, a majority of the tumors have shrunk, thanks to the care and patience of my medical team and treatments,” Barbara said. Her team included dedicated oncology nurse navigator Matilde Hinh, RN.
"There was a major reduction of the cancer in all areas with some resolution of the pulmonary metastases,” Dr. Frank said.
She experienced some common side effects from chemotherapy including acid reflux, itchy skin and neuropathy in her hands and feet. She also lost weight and her hair. One reason she wanted to share her experience was to help others going through similar side effects.
“The side effects have not debilitated me, and I learned some tricks to make the best out of a bad situation,” Barbara said.
“At the beginning of chemo, I felt like I needed to roll around on sandpaper to get relief from itchy skin. Cortisone cream helped relieve the rash,” Barbara said. “Regularly wearing compression socks and cold therapy gloves and socks helped the neuropathy.”
Barbara continued, “I faithfully followed the keto diet and was able to get back to a healthy weight.”
Sticking to the diet was no small feat. Barbara followed lists of food she could and could not eat.
“I missed eating honeydew melon and learned how to count calories and carbohydrates, but it was worth it,” Barbara said.
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In addition to keto diet specific questions, Barbara appreciated that Laura Kahn was there for her anytime she had questions about nutrition, including foods to help with acid reflux. Laura is a registered dietitian, certified dietitian/nutritionist and clinical dietitian of oncology at Nuvance Health.
“Laura was superb. We have become friends and swap recipes,” Barbara said.
“Barbara is truly a remarkable human being,” Laura said.
“Losing my hair still bothers me. It is tough to wear a bandana or beanie cap whenever I go out, but I do it because I do not want people to look at me and see a sick person,” Barbara said.
Barbara completed chemotherapy treatments for now.
“I did not expect to miss chemo! I was nervous about not having it, but knew I had to give my body a break. I also miss seeing my buds at the infusion center, from the staff to my fellow cancer patients,” Barbara said. “Sometimes you need a crutch for support, and that is what the people at Norwalk Hospital were for me.”
In October 2023, Barbara started radiation therapy under the care of radiation oncologist Dr. Christine Chin.
“I appreciated Dr. Chin and Dr. Frank because they were honest and real. They explained what was going to happen and why,” Barbara said.
Barbara also appreciated her entire care team.
“My care team was composed of many wonderful people for a totally holistic approach,” Barbara said.
Her team included Mollie Moran, licensed clinical social worker for oncology, Chaplain Kaye May from spiritual care and palliative care providers.
“There are so many aspects of cancer life,” Barbara said.
Living with pancreatic cancer
Barbara said she has been on the “what should I do” ride for nearly one-and-a-half years.
“At times, I feel like a yo-yo with all the ups and downs; it has been overwhelming,” Barbara said.
“I have mood swings; I get sad; I get depressed. But then I kick myself in the butt and remind myself I am upright and breathing,” Barbara said.
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“Last Thanksgiving and Christmas were the toughest times for me. I was anemic and needed a blood transfusion,” Barbara said.
Barbara loves Thanksgiving. She usually hosts 25 to 30 people but could not last year.
Instead, her family rented an Airbnb and furnished it with Barbara’s chairs, table and table settings so it felt like her Thanksgiving. They also made all the food.
“This year, I felt like a totally different person at Thanksgiving. We rented the Airbnb again because it was so nice. I was able to make food, including traditional Grathwohl stuffing,” Barbara said. “Now, I have my eye on hosting Thanksgiving next year.”
Barbara gets through difficulties with pancreatic cancer because she is “stubborn and a fighter.”
She also said her family and friends have been incredibly supportive.
Barbara is one of six siblings.
“We all love each other tremendously and are protective of each other. We have always been a superb support group, and they have been absolutely wonderful during my cancer journey.”
Barbara also has three children and eight grandchildren.
“They keep me going,” Barbara said.
Barbara believes she also keeps going by surrounding herself with positivity and finding purpose in her situation. That is another reason why she is sharing her experience.
“Cancer treatments can be draining, and I needed all the positive energy I could get to heal myself. I stopped dealing with negative people and hope it helps other people with cancer to know they can do that, too,” Barbara said. “My support circle is full of people who are positive and pray for me.”
“Barbara is such a sweet lady with a positive attitude,” said Samantha Santovasi, clinical research coordinator at Nuvance Health.
“Samantha is a strong and knowledgeable support and coach,” Barbara said.
Barbara also prays and believes in the power of touch.
“It meant so much to me when someone would gently touch my back or arm when I was getting chemo infusions,” Barbara said.
Barbara is open to participating in studies and trying new treatments to help others.
“I know my pancreatic cancer is not curable. However, I am going to hang in there as long as I can because maybe doctors and researchers like Dr. Frank will learn something from my experience that will help someone else in the future. Maybe, pancreatic cancer will be curable someday,” Barbara said.
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“The most difficult thing now is maintaining belief and trust that I am going to knock it because pancreatic cancer is not easy,” Barbara said. “But I will continue to fight the good fight with help from personal strength, extraordinary care team and phenomenal support group.”
Disclaimer: Outcomes from cancer vary from person to person. No individual results should be seen as typical.