Linnea’s Story: A Shift In Perspective

Linnea was no stranger to volunteering her time to an important cause. When her experience with groundbreaking cancer treatment was featured on ABC World News in 2009, she became a strong patient advocate through her popular blog, speaking engagements, and more national media stories.

But a 2017 trip to Peru with A Fresh Chapter gave her a perspective that she didn’t possess.

“It changed everything. It’s hard to explain or to articulate. But it was almost like I had an earthquake in my heart, in my soul, in my very being,” Linnea said.

When Linnea was presented with the prospect of going to Peru, aspects of the experience appealed to her – getting out of her daily environment, having an adventure, the chance to volunteer for a community in need, and especially getting to know other cancer survivors who have had shared yet different experiences from hers.

Linnea serves as a powerful voice for cancer patients before key stakeholders such as medical students and pharmaceutical leaders. She works regularly with the Harvard Medical School Executive Extension Program. She also serves on the Patient Advisory Board at LUNGEVITY and is an advisor for pharmaceutical companies including Takeda and Blueprint. In September 2019, she was a faculty member at the annual meeting of the International Association for the Study of Lung Cancer (IASLC) in Barcelona. She also serves frequently as a frequent panelist, recently for the Clinical Trials Transformation Initiative of the FDA. Linnea also participated in a U.S. Senate briefing, has been a peer reviewer for the Department of Defense’s Congressionally Directed Medical Research Programs (CDMRP) and served on the Patient-Family Advisory Council at her cancer center. She has been featured not only on ABC’s World News, but also in O Magazine, Wall Street Journal, the New York Times, Harvard Magazine, and Slate.

Still, the interpersonal exchanges between her and other people living with cancer have been the most impactful to her.

“Maybe that’s part of why Fresh Chapter just hit my heart so hard—we get to the core of things so quickly,” Linnea said. “You develop very, very intense relationships because you’re talking about life and death, and the barriers that would normally get in the way—whether it’s class, sex, gender, or whatever—they’re just not there.”

Living with lung cancer

In 2005, Linnea was diagnosed with aggressive lung cancer at age 45, learning her cancer offered poor five-year survival rates – about 14 percent.

“I’ve never smoked,” she said. “My youngest child was seven, and it never occurred to any of us that the health issues I was having might be lung cancer. It’s kind of like being struck by lightning.”

At the time, there weren’t many treatment options for her and she immediately had most of her left lung removed, followed by four rounds of chemotherapy, boosting her five-year survival rate to 83 percent.

“I was very, very hopeful that I would be cured. And then my first scan, post-chemo, I already had a new nodule,” Linnea said. “I had to switch very quickly from a mindset of being cured to figuring out a way to live with this cancer.”

A watch-and-wait scenario is an uneasy place for anyone to be, but she managed that holding pattern until the summer of 2008, Linnea’s cancer was restaged from 1B to 4.

“I knew what that meant. So I just said to my oncologist, ‘Is it time to get my affairs in order?’ And he said yes. And I asked him how much time I might have. He said three to five months.”

Both Linnea and her 11-year-old son entered counseling to learn how to cope with her death.

“My first words to the social worker were “You need to help me learn how to die.” I went on a trip back home, said good-bye to my family,” she recalled. “I mean, this was not you might die. This was you’re going to die. I just got ready. But then this bizarre thing happened where we had tried one last-ditch therapy, which was a targeted therapy.”

Linnea, a stay-at-home mom, artist and writer, became one of the first cancer patients to be treated with a drug that targeted a mutation of the ALK (anaplastic lymphoma kinase) gene in lung cancer patients. But things didn’t look promising: At her hospital, only one other patient had entered the trial and had passed away from liver toxicity.

“So, here I am between a rock and a hard place,” she said. “I know for sure my cancer is going to kill me. I hoped that this clinical trial drug might extend my life by a few months because honestly, that’s what you hoped for back then. I just prayed that it would not hasten my death.”

Linnea became the fourth person in the world with non-small cell lung cancer to try experimental therapy. The news was overwhelmingly good: She felt better within days, and a scan seven weeks later revealed most of her cancer had disappeared.

It was a cautious victory, though. The drug was helping to stop cancer from being produced – but at a certain point, Linnea’s body would develop resistance.

“I got a bye and I lived life with gusto, and also with the awareness that there was no next therapy,” she said.

Peru 2017

Part of that gusto and taking life in the moment was jumping at opportunities that arose, including the Peru volunteer trip in 2017. A Fresh Chapter offered her a fellowship that made it possible for her to make this once-in-a-lifetime trip.

“Without knowing anything about it, I said, ‘Yes, yes, yes!’”

It put her in a whole new universe. The picture she has in her mind when she recalls the Peru experience is sitting in a large room together with other participants, feeling the healing power of those connections.

“I think because we were all thrown out of our regular environment and routine and into one that was so different, the bonding was super, super intense,” Linnea said. “And, of course, you have sights, the smells, the people, the food, the intense, intense poverty of Peru. I had never seen anything like that. It gave me a fresh perspective on my own personal hardship, knowing that life is harder for so many others.”

On her refrigerator at home is a group photo from the Peru trip, a constant reminder of those connections and the impact of the experience.

“If I’m feeling like I need something from the universe, I imagine being in the middle of one of those scrums,” she said. “And I’m pleased to say that since my trip, three people I know have gone on or plan to go on a Fresh Chapter trip.”

Linnea says her work as an advocate has reached a new level of compassion, creating a stronger ability for her to hold space for others.

“I think I’ve been far more open. I thought I wasn’t very judgmental when I went, but I’ve been even less so, in a more respectful way. Because there were a couple of times I had some cultural blunders there, and it felt shameful, but it also was so very instructional to be out of place, to be out of time. And to be the one who was awkward.

“It’s just opened up my heart in an amazing way.”

*To learn more about Linnea, visit her blog https://outlivinglungcancer.com/ or see her AFC testimonial video here: https://vimeo.com/334312965.