“My throat had been hurting for a few months, but no one knew what was going on. I got passed around a lot, told repeatedly that everything was normal, and then on my third trip to the ear/nose/throat doctor, everything changed.”
That’s how Libby Johnson found out she had HPV-related throat cancer. It was the start of a journey into tough treatment — a feeding tube, seven weeks of daily radiation, two sessions of intensive chemotherapy — and an even tougher waiting game.
“I cried,” Johnson says, tearing up a little bit. It’s the day after the House passed the AHCA, and we’re sitting down over tea. (She hasn’t been able to drink coffee since getting the tube.) “I cried and cried. Not as much as I thought, but I cried. Not knowing, it’s the most anxiety-producing thing in my life. You need to function, take care of your kids. I focused on my kids a lot. My friends just swooped in and picked me up.”
Luckily for Johnson, among the people swooping in were former bandmates and friends from the Twin Cities and Fargo rock scenes she’s been a part of since she was a teenager, including Annie Sparrows and the rest of the early-’00s Minneapolis punk band the Soviettes.
Once people found out about Johnson’s diagnosis, Sparrows says, “We just started working. A close group of her friends got together two days later and it was, ‘OK, you do the GoFundMe page, you do the Caring Bridge.’ I said, ‘I do one thing really well, so I’ll get a benefit show together.’”
Sparrows and friend Carmen Duerr asked Johnson what her dream lineup was, and after moving past the seemingly impossible (Jawbreaker) and the scheduling conflicted (Har Mar Superstar, who donated the proceeds from a separate show), the benefit was set in stone at the Turf Club. “Libby 1, Cancer 0” on May 6 featured a reunited Soviettes and a reunited Capital!Capital, as well as Birthday Suits and Blood Banks, and became not just a fundraiser but a sold-out gathering of old friends, some of whom flew into town to celebrate Johnson completing treatment.
The story of how Johnson first got involved in rock ’n’ roll as a North Dakota teenager is just too damn punk for words: “Sarah Hassell wanted an all-girl band to open for Bikini Kill in Fargo so I bought a guitar and we all learned how to play in time for the show. Sort of.”
That led to Bombshell, with Hassell and Susy Sharp (later of the Soviettes) on bass. After playing in another Fargo band, Tokyo Raygun, Johnson relocated to the Twin Cities and was soon playing guitar in Spider Fighter with Arzu Gokcen of Selby Tigers and Pink Mink.
Once Spider Fighter ended, Johnson settled in with her longtime partner, B.J. Thorkelson, had two kids (Arlo, 6, and Astrid, 2), and went back to school full-time to pursue her Master’s in Marriage and Family Therapy. With just a couple credits and her thesis left, her throat started hurting.
Johnson came into her treatment better informed than most, both professionally and personally — she’s worked in women’s health, and her mother had HPV-related cervical cancer. Even so, there’s been a ton of information to absorb.
“The HPV part of it, they know so little, they told me I could have gotten it from kissing someone 15 years ago and it just sat there until it caused my cancer,” she says. “I’ve never to my knowledge been exposed, I’ve never tested positive for it. I feel like everyone I know has. It’s extremely common. There are so many strains, so many facets that we don’t know about. We need to be vaccinating and teaching our kids that it’s much more serious than we were taught.”
Contrary to popular belief, HPV doesn’t only affect women — the majority of fellow patients Johnson has met during her treatment have been men. And it’s ubiquitous. In fact, the vaccine isn’t even available to people over 26 because it’s assumed that by that age you’ve been exposed.
Johnson’s treatment is finished, and she and her doctors are hopeful that her cancer is too. “From minute one, they were confident, saying, ‘We’re going to beat this,’” she says. “Arlo’s teacher told me today that she overheard him telling his friends, ‘My mom’s better! She can lift me up and hold me again!’”
But now come weeks of waiting for more tests and more results. “I’m not dealing right now. I’m frozen a lot. I don’t like waiting. I don’t like not knowing. And then the healthcare bill happened, which just destroyed me. All these people tossed aside — it makes me feel expendable.”
Two days later at the show, it’s impossible to catch up with Johnson — the Turf is just too packed with friends, at the bar and on stage. The feeling of community and support is palpable, and even with the crowd, it’s like all the bands are playing for Johnson alone in the front row. Blood Banks cover Jawbreaker. Birthday Suits and Soviettes deliver with high intensity. But the highlight might be the long-lost Capital!Capital, who churn out a spot-on set of angular punk as tight as the day they called it quits.
“We played our last show here 16 years ago, so it’s amazing to reunite for this,” says bassist Jacob Sharff. “Everyone’s here for Libby. It feels like an explosion of love.”
Johnson makes her way out quickly at the end of the night, exhausted but overjoyed.
“I want to do a lot more,” Johnson tells me. “I don’t know what that looks like yet with a small baby. I want to get knowledge out. Vaccination education is very important to me, health care is very important to me. So whatever I can do to get people more access to health care, however I can help people once I finally get my degree, I want to do make that part of what I do.”
Johnson plans to donate leftover money from the benefit and the online fundraisers to other cancer patients and wants people to be better educated about HPV. But she’s got her own concerns as well. Currently enrolled in an individual insurance plan through the ACA, she previously had to buy into Minnesota’s high-risk pool due to a pre-existing condition, so she’s understandably passionate about the current healthcare debate in D.C.
“I feel really helpless right now,” Johnson says. “Do our representatives get our messages? Do they even care? It’s difficult to not feel hatred when you feel so hated by the people who represent you. I don’t see how anyone in support of this new bill can live with themselves.”