Feature — Walking with Jane goals-Walking with Jane origin-NET cancer organization
about 1253 words with optional trims
Husband wants to put human face on NET cancer
By Katie Dupere
FALL RIVER, Mass. — When Harry Proudfoot lost his wife Jane Dybowski to neuroendocrine tumor (NET) cancer in December of 2010, he realized the only way he could grieve was by going after the disease that killed his wife.
Walking With Jane, a budding foundation and an online resource about the cancer, has been the outlet for that grief — an attempt to “kill the disease.”
NET cancer is believed to be rare. However, Proudfoot thinks the 5.7 cases of NET cancer in 100,000 reported by the most recent research is not accurate.
“My suspicion is it is higher than that,” he said. “A lot of times, this type of cancer goes undiagnosed. My wife was told years ago that she had IBS (irritable bowel syndrome), which is like saying, ‘There is something wrong in the digestive tract — we just don’t know what it is.”
A study released in 2009 of over 15,000 autopsies showed neuroendocrine tumors that had not been previously diagnosed in nearly one percent of them. If those statistics were accurate, there should be about three million cases of NET cancer in the United States. About 12,000 people were diagnosed with the disease last year. There are approximately 120,000 people living in the United States who are known to have the disease.
The average NET cancer patient receives three incorrect diagnoses before being correctly diagnosed.
While there are organizations working to raise funds and awareness about NET cancer, Walking With Jane was created with the goal of putting the type of cancer Dybowski died from on the same level as more well-known cancers.
“The way we do that is by putting a human face on the disease,” Proudfoot said. “That is why the organization is called Walking with Jane as opposed to anything else. I want that kind of personal feel to the disease.”
Proudfoot has set goals for the organization and its website, walkingwithjane.org.
“In the long-term, what I would like to do … is to get individual NET cancer patients and their caregivers to tell their stories online,” Proudfoot said. “The more we put real, human faces on this, the more people can connect to a human being to the disease and the more they will want to help.”
NET cancer is relatively unknown even in the medical profession. Proudfoot remembered Dybowski’s heart surgeon telling him about the rarity of the disease.
“Her surgeon said to me the night before she died, ‘We spend years teaching young doctors, ‘When you hear hoof beats, don’t look for zebras.’ A zebra killed your wife,’” he said.
Proudfoot wants to change this. With Walking With Jane, he hopes to raise knowledge within the medical community, as well as in the general population.
“When they tell someone, ‘It’s IBS, anxiety or hot flashes,’ we need to encourage patients to keep digging and to keep asking questions,” he said.
Another goal is to raise funds for research relating to NET cancer treatments.
“We need to come up with enough money to get doctors and drug companies to find ways to manage, and eventually cure, this disease,” he said.
Currently approved drugs can only alleviate the symptoms, not cure the disease.
(Begin optional trim)
Proudfoot said part of putting a face on the disease is letting people know the story of his wife and her battle with the disease. He remembers Dybowski as more than a quick-witted scientist with a strong devotion to education. He said she was skilled in several different areas.
“Each year, she would make a cross-stitch ornament that represented the two of us,” he said. “After we retired, one of her plans was to teach herself how to paint. She was an unbelievable cook, but an unimaginable pastry chef. She did topiary. We had an English ivy that she had shaped to grow in the shape of heart. Her love for tennis was indescribable. She is one of the three smartest people I ever met. She was the first person to edit any piece I’d written.”
(End optional trim)
(Begin optional trim)
Proudfoot said he remembers Dybowski’s passion for teaching trumping her health more often than not. In the fall of 2009, Dybowski caught the H1N1 flu while unknowingly battling NET cancer at the same time.
“She would say she had no time to go to the doctor’s,” he said. “She would say, ‘I’m behind with the AP kids. I can’t afford to take time off. There are kids in that class who really need chemistry.’”
Proudfoot said her students at Westport High School in southeastern Massachusetts took notice of Dybowski’s devotion to teaching, even when she was visibly sick.
“There was one kid who told her at the end of the year, ‘We all know there were days you didn’t want to come in, but you were here anyway, and I want to thank you for that,’” Proudfoot said. “She brought that same passion to everything we did — from cooking to landscaping to our marriage.”
(End optional trim)
(Begin optional trim)
Proudfoot said one of the things Dybowski was most known for was her quick wit. He remembers that humor carrying on into the hardest days of her illness.
“We were in the hospital and she had been through two comas and she had just had a permanent pacemaker and feeding tube put in — and she’s making jokes,” he said. “She said to the cardiac surgeon, ‘I know I can’t eat anything yet, but I’ve got to tell you, if there was a cow in that corridor right now, she’d be in trouble.’”
Proudfoot said this humor helped to ease the tension surrounding her last months and days alive.
(End optional trim)
“She was gifted in so many areas,” he said. “When we lost her, we lost someone very, very valuable. The most important thing we lost was someone who really cared about people.”
Proudfoot remembers going to the hospital staff on the day she died to thank them for helping his wife.
“Every one of them had a story,” he said. “There was something that Jane had done that they would never forget. I went up to one nurse from the day she went to surgery. I said, ‘I want to thank you for what you did for my wife.’ He said to me, ‘You don’t have to thank me. Working with your wife was one of the great honors of my life.’
(End optional trim)
For Proudfoot, the reason for creating Walking With Jane and the reason for keeping Jane’s memory alive is simple.
“I just don’t believe anyone with that strength, bravery and sense of humor is someone we should ever forget,” he said.
But Walking With Jane is not only about having Dybowski’s memory live on through a namesake organization. For Proudfoot, it is also about settling the score with the disease that took away his wife.
“It’s not just that I want people to remember her,” he said. “I want her to be the reason we kill this disease. I would like her to have one more accomplishment to put on that resume: ‘This woman’s death was the beginning of the end of this disease.’”
This story provided by Walking with Jane. Inc., a 501 (c) (3) non-profit dedicated to eradicating NET cancer. For more information about NET cancer or Carcinoid Syndrome contact walkingwithjane@gmail.com or visit our website at walkingwithjane.org.
–30–
