Three months ago, Bill Paulk was “knocking on death’s door.” Not due to his stage IV duodenal (small intestine) cancer, but because he was severely malnourished.
Anne Marie Singerman, while battling stage IV endometrial cancer, couldn’t keep food down and lost so much weight she couldn’t get out of bed without having the room spin around her.
Now on intravenous total parenteral nutrition (IV TPN) managed by Option Care Health, both say they have their lives back. They learned that it’s often not the cancer or even the treatment that causes the most severe problems. It’s malnutrition.
In the fall of 2018, Bill, of Dallas, was committed to losing weight. At age 47, 5’10” and 220 pounds, he said people would best recognize him as “a guy who loves to eat,” prompting him to go on the keto diet and lose 30 pounds. Satisfied, he stopped dieting but the weight kept coming off. Then Bill started throwing up after he ate. He worked hard to eat healthy, but nothing helped. In spring of the following year, he consulted with a gastrointestinal specialist, had a CT scan and was diagnosed with stage IV duodenal tumor, which had spread to his liver and his left hip bone. So began what he calls Act 1 of his journey.
Act One: Bill’s Journey to TPN
Because the tumor interfered with eating, he had a feeding tube placed, but it constantly leaked and was so painful he was on morphine for an entire year. He had to have the tube replaced three times in one week, and each time the size of the tube was bigger and bigger. Unfortunately, he still wasn’t getting the nutrition he needed. In March of 2020, Bill weighed 96 pounds. He was so gaunt, he said he resembled Gollum, from Lord of the Rings.
“People close to me, including my doctors, didn’t expect me to make it,” he said. “Then I had this cathartic moment on Memorial Day weekend. I remembered that every time I was in the hospital the nurses kept saying ‘Why aren’t on you TPN?’”
Bill’s oncologist was hesitant to put him on TPN due to the concern about its effect on his liver. Despite the risks, he told doctors “I can’t do this anymore. I’d rather have a great year on my feet than three bad years on my back.”
He started TPN that weekend in the hospital, where an Option Care Health nurse prepared him to transition to home infusion. Once at home, Option Care Health dietitian, Heather Taylor, sat down with Bill and his wife, Jenny, answered their questions and provided reassurance that this would be a partnership.
Act Two: The Rebuilding of Bill Paulk
Within a week or so, he started to feel better, needed less and less morphine, and has been off of the painkiller for months. Heather recommended some key levels of nutrients to add to his TPN that would accelerate his healing, including prealbumin and vitamin C.
He was scheduled to have surgery to remove the feeding tube, which had been in his system for a year. The day of surgery, he took the bandage off and it looked clean. It was at that point, the surgeon agreed he didn’t need the procedure.
“The nutritional flip is what caused the healing,” Bill said. “Avoiding surgery is not a minor thing when you’re getting chemotherapy and balancing other health issues. That was my turning point, literally seeing the nutrition heal me. It’s amazing.”
He’s now up to 150 pounds and starts his TPN about 6 p.m., receiving it for 15 hours, throughout the night. He can carry the bag with the nutrition in a small backpack and leave the house to take walks, go to the mall and movies with Jenny and his daughters, Olivia and Sophie (while taking proper precautions) and do Qi Gong, a moving meditation. In the future, Bill hopes to return to playing tennis.
He’s dedicated to eating lots of vegetables, fruits and nuts with the goal of eventually getting off of TPN entirely, which Heather fully supports. Every week, they discuss his nutrition levels and adjust them as needed.
“I feel like I’m an individual working with Option Care Health, not just a cancer patient,” he said. “The nutrition and support has changed everything. For a year, I wasn’t fighting cancer, I was fighting malnutrition. Now I am focusing on battling cancer.”
“People now want to see me. They say everything from my voice to my energy has changed,” said Bill. “I feel like Option Care Health saved my life. Now I’m working towards Act 3, dispersal of wisdom.”
“I’ve come back to life”
Act One: Anne Marie’s hysterectomy was just the start
Diagnosed with early endometrial cancer in 1996, Anne Marie Singerman had a hysterectomy and thought that was it. Unfortunately, it came back in 2004 where she endured radiation as well as chemotherapy and was even warned about the likelihood her cancer could return yet again. It did, in 2013 and again in 2017.
Treatment had always kept it contained, but this time it had spread resulting in a colostomy. She started vomiting after eating and dropped from 150 to 117 pounds in six months. She was so fatigued and weak that she spent all of her time in bed or on the couch, using a walker and wheelchair to get around.
“I just kept thinking it would get better,” said Anne Marie, 78, of Fort Lauderdale. “One day I was getting out of bed and the ceiling started to rotate.”
So she saw a gastroenterologist, who said she was extremely dehydrated and had moderate to severe malnutrition. Her electrolytes were out of whack, coupled with low blood pressure and high heart rate.
In the hospital, she received hydration, had TPN, gained weight and felt better. Once home and off TPN and hydration, Anne Marie made sure to drink plenty of fluids, but kept vomiting. After 10 days, she was back in the hospital, a pattern that repeated itself several times.
Act Two: “Do Not Send Me Home Until You Solve My Problem”
When she ended up back in the hospital yet again, she decided something had to change. “This time they had the dietitian come talk to me. I said, ‘Do not send me home again until you solve my problem.’” They determined she had a blockage of the small bowel, which was interfering with the absorption of nutrition. “They put me on TPN and I’m still on TPN. It was terrific. I gained weight and am feeling so much better.”
Option Care Health manages her home infusion. “They came up with a great plan and I’m thriving,” she said. Blood draws occur once a week and Option Care Health dietitian, Erin Corrigan, calls to discuss changes to Anne Marie’s nutrition based on her results. Most of her levels have returned to normal.
“I love working with Erin. She is a partner, where I get to voice my preferences. She’ll say, ‘here’s what I’m thinking, tell me what you think.’ She never gets tired of answering my questions.”
Anne Marie starts her infusion at 6 p.m. and it goes all night. “If I want to be free, I take the bag with me wherever I go. Before the TPN, I felt so weak, I never thought of leaving the house.”
Prior to receiving TPN, she was not going to pursue more cancer treatment, but because she is doing so well, and now on an immunotherapy, she is hopeful this will eradicate the cancer. Once that happens, she plans to take a biking trip to London with her husband, Malcolm. The two have traveled and biked all over the world, from the Netherlands to Japan.
As Anne Marie recovers, she enjoys catching up with her two daughters, one nearby and one in New York City, as well as her grandchildren.
She is thankful for her increasing energy and excited about making plans to travel. “I’ve come back to life.”
Act Three: Raising Awareness and Sharing Wisdom
Bill and Anne Marie have experienced the physical devastation of malnutrition and are both grateful for the clinical nutrition treatment that has returned them to active lives. But Anne Marie remains puzzled by the diagnosis.
“I am a retired physical therapist, I’m a happy person, I have a college degree, I eat a balanced diet, I love fruits, vegetables and biking,” she said. “I kept thinking, ‘How does someone like me end up with malnutrition?’ Erin told me we’re realizing it happens more than we thought.”
According to the American Society for Parenteral and Enteral Nutrition (ASPEN), approximately 15,000 hospital patients with malnutrition go undiagnosed every day and experience higher costs, longer stays and increased mortality. Option Care Health is dedicated to providing high quality, individualized clinical nutrition to patients in need of infusion therapy and is committed to transitioning patients out of hospitals and into lower cost sites of care sooner, including at home or in one of our 125+ infusion suites across the country.
Learn more about malnutrition and join us in spreading awareness this ASPEN Malnutrition Awareness Week*, October 5-9: https://www.nutritioncare.org/MAW/
*Malnutrition Awareness Week™ is a mark of the American Society for Parenteral and Enteral Nutrition (ASPEN). Used with permission from ASPEN.