ATHLETE PROFILE: JILL HAAGENSON

When considering what message she could possibly offer to those living with breast cancer, whether they’re in active treatment or remission, Jill Haagenson can think of only one thing,

“Get the whole picture.”

As one of the 6-10 percent of patients whose initial cancer diagnosis was de novo metastatic—meaning she was diagnosed stage four from the beginning—Jill’s journey with breast cancer has been a rather solitary one. Her story ebbs and flows between the simple determination of an inherently adventurous spirit, the kind drawn to international competitive sailing, tennis and rowing, and the struggle of one who has already lost many of the fellow stage four cancer patients with whom she shared brief friendships.

“When you get caught de novo, it’s really hard to figure out how to go on tomorrow. I was feeling great, I was doing all this stuff, and then I find out I have stage four breast cancer. It took me a long time to figure out what it was I was going to do with this.”

But Jill is the type who’s quick to find her purpose in any situation. So, following her diagnosis almost three years ago, as she went straightaway into heavy chemo, she simultaneously embarked on a new mission: To shine a light on the realities of metastatic breast cancer. This potential outcome for any breast cancer patient is one she finds too infrequently discussed outside certain circles and not strongly emphasized in popular awareness campaigns.

“I’ve been really involved in the social media stuff, where our role as advocates [has been] to go out on our Facebook, and all our social media, and get those facts [about metastatic breast cancer] out.” Though Jill herself admits to not knowing much about the truth of metastatic breast cancer until she began researching her own diagnosis, she was still surprised by the number of friends who responded to her social media outreach with a simple, “We didn’t know.”

That’s precisely what she’s trying to change.

“I advocate for two groups. MetUp, which is trying to get a lot of this stuff in Washington changed, because at no time do we know how many women have stage four breast cancer. And stage four needs more. Up until then, we have awareness, awareness, awareness. In stage four, you want a cure, or you want something to help you get along longer.” In addition to her work with Met-Up, Jill also advocates for METAvivor, a nonprofit that gives all donations to research for metastatic breast cancer and support of patients living with the disease.

Despite her passionate frustration with metastatic breast cancer and the seeming lack of awareness that surrounds it, Jill still maintains an easy lightheartedness. She resonates with delight when talking about her tight-knit family, speaking primarily of her sons, Nate and Gabe; describing them as “chalk and cheese” in their polarity, she also enthuses that both are ceaselessly supportive of her. In other moments, Jill is quick to laugh at herself when telling stories of her own mischievous sense of humor and competitiveness, characteristics that revealed themselves quickly during her comedic first run-in with ROW.

When she first joined the team in summer 2017, Jill was faced with a minor clashing of worlds thanks to her former role as a competitive sailor. “I think I acted like I was sort of a hot shot, because I knew about boats.” The playful, self-amused grin spreads across her face. “I was like, ‘Oh, well aren’t we going to rinse the boat off right now before we put it in?’ Because a clean boat is a fast boat. They’re like, ‘No, we’ll rinse it off after.’ Like, okay. I was like, ‘Oh, do we have shammies?’ They’re like, ‘No, we have rags.’ Like, calm down!”

In the earliest stages of her journey with breast cancer, Jill explored yoga and meditation, and dove into books that she thought may provide guidance. While these pursuits didn’t do much to satisfy her venturesome personality—she recalls how her brain wandered

consistently off the mat—she did find a few nuggets of inspiration that surfaced anew once she settled in with her rowing family.

“There’s a lot out there about how people are different, and how you should be kinder than you can imagine to other people. Love and kindness, you know? Love and kindness. It’s all the way we should be. But we’re all imperfect, so a lot of times we’re not as kind as could be. I feel like in ROW, we have a lot of really kind people. That was like a good added plus for me that reinforced something I was trying to get.

“[ROW] has become a major part of my life. I love the people that I’ve become friends with. Because I have brain mets, I don’t remember a lot of names and sometimes I forget words, but they’re so forgiving!” Her face breaks into a gleaming smile once more as she says it. “It’s just like this really cool, nice family, and it is very family like. People are super supportive and funny but, like a family, they’re going to push you hard and not let you off the hook.”

With exercise as her self-proclaimed saving grace, and ROW the outlet through which she’s able to maintain it, Jill has approached breast cancer as yet another adventure. As she carries on in her role as advocate, she is also participating in clinical trials and keeping her sights set on tomorrow—both her own tomorrow, and the tomorrow she may be able to help others achieve.

“I’m at the stage in my illness that, probably from here on, I am just going to be on some kind of clinical trial. I’ve already been on one. And the way I look at that, if it doesn’t work for me at least I’m giving them some information for people that are coming up. We all know that we’re temporary here. I don’t want to live forever, but I’d like to make it to the summer.”

And this brings her full circle, back to the message she has for all breast cancer patients, where she pauses.

“I often wonder, if I was in stage one or two, and I met somebody who was stage four, would I want to know more about it? Or would I kind of want to keep a low curtain on it?” But she knows the curtain is not an option. Not for her. “Breast cancer isn’t pink you know? I don’t want to put up any guards or borders to other people; they’ve got their own issues, too. But I want them to know what this is—a disease people are dying from, and are dying from as much as they were 20 years ago. If you’ve been tagged by breast cancer at any stage, you’re part of it. You’re part of this tribe now.”

For now, as Jill continues in her mission to bring greater awareness and, more importantly, research dollars to metastatic breast cancer, she’s delighting in the opportunity to connect with her still-new ROW tribe.

“I’m just trying to take it in. And then, in practice, it’s great having a coach because you just have to do what you’re told. You can just concentrate on them, and you don’t have to make decisions, and you don’t have to think about what you’re going to get at the grocery store later. I just do my job, and I just learn how to do it well. Then, I walk out, and I feel like I have something new.”

This profile was first published in the 2017 Recovery on Water annual report.

Editor’s Note: Jill passed away on June 30, 2019. A passionate sailor and rower, fiercely focused advocate, and dedicated friend, Jill was a part of ROW for two years, and throughout her cancer journey she remained a bright and indomitable spirit who was known for her enduring smile.