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'Enjoy life and make the best of every day': Nolan, daughter discuss her fight with lung cancer

Minnesota 8th District Rep. Rick Nolan and his daughter Katherine Bensen have come together over the past three years in her fight against lung cancer. (Nolan family photo)1 / 3
Minnesota 8th District Rep. Rick Nolan shared a family album photo of himself and his youngest daughter, Katherine, taken in the late 1970s during his first run in the U.S. House of Representatives. (Nolan family photo)2 / 3
U.S. Rep. Rick Nolan and his daughter Katherine Bensen. Since her lung cancer diagnosis in 2014, Nolan has fought to increase lung cancer research funding. (Nolan family photo) 3 / 3

DULUTH — The coming year almost promises to draw U.S. Rep. Rick Nolan into a battle for his political life.

He's being targeted from all sides — both for his 8th District congressional seat, which is up for election in 2018, and his deepening support of mining expansion in northern Minnesota.

But earlier this month, the 74-year-old congressman spoke with Forum News Service about a different, more personal topic. He was joined by his adult daughter Katherine Bensen in a conference call to discuss her incurable lung cancer.

Across 45 minutes, both family members exhibited a nuanced understanding of her disease, and talked about offshoot issues such as bringing better cancer care to rural America.

Bensen carried most of the conversation and addressed the bittersweet times.

"I've met so many great people who have lung cancer," the 43-year-old Bensen said. "I'll talk to them and then a month later they'll have passed away."

A successful software saleswoman, wife and mother, Bensen developed a persistent cough and went to have it checked out, triggering the events which led to her diagnosis three years ago on Dec. 31.

"I was devastated and I didn't know what to do or what that meant," she said. "And now I do."

Nolan shared the news of his daughter's fight with cancer shortly after it began. Newly re-elected, the three-time incumbent explained he was skipping his congressional swearing-in ceremony to be with family following Bensen's diagnosis.

Nolan, DFL-Crosby, continues to spend time at the Bensen home in Roseville, Minn., making it his regular first stop on weekends home from Washington, D.C.

"I had some lasagna recently that Katherine had made and brought over to Macalester College," Nolan said. "Her son is the point guard for Carleton College and we watched them with a nice victory."

Bensen a non-smoker

The youngest of four adult children to Nolan and his wife, Mary, Bensen has four children of her own between the ages of 12 and 19. Her husband owns a personal training gym.

"We are a very healthy family," she said.

Prior to developing a cough, Bensen noticed herself exercising less and less. She wondered if she might be depressed.

A non-smoker, the thought of cancer never occurred to her and, indeed, how to bring lung cancer screening to the masses is now her pet cause. Bensen was stage 4 — with cancer throughout her lungs, and also found in her lymph nodes, chest and spine — before she knew what hit her. In fact, the only lung cancer screening now, she said, is for patients age 55 to 77 who have pack-a-day smoking habits.

"They're just not looking for lung cancer in young, healthy women," she said.

Moved by his daughter's plight, Nolan has in recent years in Congress paralleled her fight with one of his own. He added a total of $5.8 million to fund lung cancer research across multiple measures which have passed the House. He co-wrote a bill calling for a study on the link between women and lung cancer.

"They don't know if it's environmental, pollution, if it's the food we're eating or what — they can't figure out why this is happening to young women who are non-smoking," Bensen said.

Nolan has also made efforts to increase the public profile of lung cancer. Though it kills more people than any other form of cancer, it trails proportionally in funding and notoriety for being stigmatized as a smoker's cancer. This fall, Nolan used the Congressional Lung Cancer Caucus he co-chairs and helped to form in 2015 to stage a "die-in" rally on Capitol grounds — with 433 people used to represent the number of Americans who die each day from lung cancer.

Additionally, Nolan has sought the influence of former Vice President Joe Biden, whose Cancer Moonshot 2020 Initiative is seeking to drive new cancer discoveries.

"I have talked with him about it at considerable length — so has Katherine," Nolan said of Biden, who has twice campaigned in the Northland in recent years on Nolan's behalf. "Biden has taken a real special interest in Katherine."

Bensen's cancer is a cunning kind, adenocarcinoma, which mutates over time as a response to the targeted therapy treatments she receives at the Mayo Clinic in Rochester.

"So, kind of the way it goes with my lung cancer is that there is no cure," Bensen said. "The best option for me, which they've been doing, is keeping me alive with target therapy drugs and treating it like a chronic disease."

She was a fortunate genetic match — one of the 10 percent at Mayo with her sort of cancer to qualify for the life-sustaining target therapies, which cancer.gov said, "interfere with specific molecules involved in cancer cell growth and survival."

"Katherine's original diagnosis was 10-12 months — unless she qualified for targeted therapies," Nolan said, before describing how doctors have had to adjust to the cancer's adaptations. "She doesn't have one cancer now, she has three cancers in her lungs — the one she started with, the one she got when the second drug quit working, and, lucky again, they found another (drug) that works for her now. She's on her third. She's alive thanks to modern medicine and good insurance."

Health care, and Nolan's support of a universalized single-payer system, figures to become a top issue in Nolan's upcoming re-election campaign. But Bensen generally doesn't talk about insurance, she said, because she's fortunate again in that regard and understands it can be a difficult topic for others who may be struggling.

Out-of-pocket costs for her two main drugs would be $25,000 per month without coverage, she said. She takes them every morning — and other drugs on top of those to combat the side effects which still make it difficult for her to get out of the house before 11 a.m.

Nolan noted the "ancillary things" with which his daughter copes, including diarrhea, nausea, mouth sores, skin rashes and more.

"She never complains — she's just a very strong woman," Nolan said. "She takes what energy she has on any given day to advocate for finding a cure and spending time with her children and family."

Bensen is sure to make it to the gym two or three days a week, too. Doing so keeps her in a right mindset as much as anything else, she said.

"I'm no longer able to do any kind of cardio," she added. "I lift weights, but what that looks like isn't anything like it used to."

Little things

Those close to Nolan say he has straddled his public and private challenges well in recent years.

"Rick's family is incredibly important to him, and he's found a way to balance being an effective legislator with caring for the loved ones in his life," said Jeff Anderson, Nolan's district director in Duluth.

Nolan and Bensen both talked about the importance of speaking up about her cancer and what the publicity can mean to others. Every time she speaks out, Bensen said, "I usually get at least one or two phone calls from it — people asking for more information about something they need."

While talking about the fight of his daughter's life, it's hard not to also consider the political fight in front of Nolan.

He is being challenged within the Democratic-Farmer-Labor party by Two Harbors native Leah Phifer, who opposes Nolan's mining positions. And should he usurp her threat to his DFL endorsement, there's Pete Stauber waiting to clash in the November midterm general election. The Duluth Republican has energized his party for the way he ticks several boxes on the checklist of what makes a good candidate. Additionally, independent candidate Ray "Skip" Sandman tends to siphon votes from DFL rolls. The hurdles make it evident Nolan's bid for a seventh career congressional term is under siege.

But when asked about it, Nolan dismissed the specifics of the race as if he were an older, wiser blockbuster movie character tossing a laser sword over his shoulder.

"I've been through so many election contests in my life — and I've won most," Nolan said. "I've lost a few. But I'm getting to feel like Katherine does: It is what it is. I'm going to enjoy life and make the best of every day."

Nolan said he's never seen his daughter so at peace with herself.

"I have five strong reasons for living — and the list could go on," Bensen said of her immediate family, before addressing her fears.

"It's a fear that I have that there will someday be no more options and my options will run out," she said. "But I still have a lot of options right now, like immunotherapy, that I have not tried yet. The doctors at Mayo Clinic told me they could keep me alive another 30-40 years."

Bensen is keen to "all those clichés about enjoying the little things," she said, recalling a day recently when she took her daughter to the grocery story. They needed bananas. The girl also asked for gingerbread houses.

"I would have said no — it was a school night — but I said yes," Bensen said, before describing her kids assembling the houses as she rested. "I was tired. I couldn't help, but I heard them singing and it brought tears to my eyes. They were singing the A-B-Cs."