WOODBURY, Conn. (AP) - Nancy Cappello and her husband, Joseph, never gave a thought that he might need to take over Are You Dense?, the organization they founded to inform women about the complications dense breast tissue can cause for mammograms.
About 15 years ago, Nancy Cappello survived breast cancer that had gone undetected because her dense breast tissue had made it difficult for cancer to be identified in her mammogram.
Her health, her husband said, had been fine since then, and she energetically embraced the role as the face of an organization that was getting national attention.
“Healthwise for Nancy, things were going along very well,” Joseph Cappello said. “She felt good.”
But then, he said, she suddenly didn’t.
“After a very active lifestyle and doing the work of dense breast tissue, we were away on vacation down in Florida and came back and she was feeling just very sluggish and tired,” he said, “And that’s not like her; she usually jumps on the treadmill.”
After a blood transfusion and tests, it was determined Nancy had myelodysplastic syndrome (MDS), which is bone marrow cancer.
“So, her breast cancer didn’t migrate to her bones or her brain or anything like that,” he said. “It’s treatment-related, meaning the treatments she had 15 years ago are what eventually culminated to MDS.”
She died of the disease Nov. 15.
“Here’s a perfect example of the reason why we’ve been working so hard for the last 15 years to let women know about their breast sensitivity,” her husband said Wednesday. “Here’s a perfect reason why to let women know to catch cancer early and the danger of a late-stage diagnosis.”
It’s a mission Joseph said he knew needed to continue.
“We had never had a conversation of what to do if she passed away. We started Are You Dense? together 10 years ago. We started this whole movement of dense breast tissue 15 years ago. But Nancy became the real architect of this because she was the face of Are You Dense?,” he said.
“So, we never thought about ’What if something happens?’ But since it did happen, I knew immediately that I was not going to let this go,” he continued. “We did so much good for so many people. To date we have 37 states with breast density laws. That’s a lot of work, that’s a lot of states and that’s a lot of saved women, let me tell you.”
Those laws, which make it a crime for doctors not to inform women with breast dense tissue that other forms of testing might be more accurate than a mammogram, were followed by a federal law the couple had, with the help of U.S. Sen. Dianne Feinstein, D-Calif., lobbied for it for years.
Nancy didn’t live to see President Donald Trump sign it into law in February.
“Every year, 45,000 women who walk away from their physician’s office with a normal mammogram walk away also with an undetected cancer. That’s in the U.S.,” Joseph Cappello said. “Staggering numbers.”
While the legislative mission of Are You Dense? culminated with the president’s signature, the educational mission is ongoing.
And now, he’s the leader of it.
“Nancy and I worked so close together, it was just a natural step for me to take over. I was voted in by the board of directors immediately, unanimously,” he said. “I had no second thoughts about it whatsoever. I knew this is what I had to do.”
But, he said, it hasn’t been easy.
“Nancy was the day-to-day person and I’ve slowly become the day-to-day person,” he said. “It’s like buying a business and learning it. There’s a period of time you get used to the language and you get used to the protocols. It’s coming along. It’s going to take a little time.”
Donna Johnson, president of the organization’s board of directors, said while Nancy was the “face” of the organization, Joseph has brought some energy to the role to which he’s stepped up.
“Joe’s doing a great job. He’s got us all coming up with new ideas because we really want to continue the work,” she said.
“I honestly don’t know how he’s done it,” she said. “He was with Nancy every step of the way. They were so devoted to each other. What that man did for her at the end, it was amazing to see.”
Joseph said taking over for his wife has been challenging, yet cathartic.
“First of all, trying to get used to my wife of 44 years passing away - without trying to hang on and run Are You Dense? - is a terrible thing to happen for anybody,” he said. “But taking over Are You Dense? has actually been quite therapeutic for me, because I’m always busy, and if I wasn’t busy, I’d be doing a lot of thinking, and that wouldn’t be good.”
At 69, he didn’t expect to spend his retirement running a national nonprofit out of his Woodbury home - a role his wife embraced.
“We didn’t realize where she was on the prism of life,” he said. “But we recognize now, you just don’t know day by day what life’s going to hand you.”
For information about Are You Dense? or to donate, visit areyoudense.org.
Online: https://bit.ly/2ViNLnM
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Information from: Republican-American, http://www.rep-am.com
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