A Minneapolis millennial shares the raw reality of living with terminal cancer

Awestruck kids think Graca's a real-life pirate. Kind ones tell her they hope her eye gets better. It's middle-aged men who say things like, "It's too early for Halloween" or "At least they didn't make you walk the plank!"

"If I'm in a good mood, I'll kind of joke around, too," Graca said. "But if I'm in a bad mood, then it's 'Yeah, 'cuz I have a brain tumor, Buddy.' "

Most people who meet Graca would never guess that she's making preparations for her death.

Two years ago, at age 34, the Minneapolis copywriter joined an unenviable club of young adults with cancer. She's part of growing cohort — between 1973 and 2015, cancer rates among those ages 15-39 rose by 30% —which experts attribute, in part, to improved screening, but also an ambiguous mix of environmental and lifestyle factors.

Doctors don't know why Graca developed metastatic cholangiocarcinoma, otherwise known as bile duct cancer, which stealthily spread to her brain, liver and bones before presenting symptoms. It's extremely rare and incurable. The five-year relative survival rate is 2%.

Graca has endured the trifecta of typical cancer treatments — surgery, chemotherapy, radiation — sometimes all within weeks. Since she's single and lives alone, she has navigated all this without the aid of a primary caregiver, during a global pandemic.

Being a digital native, Graca turned to different social platforms and found each valuable in its own way.

She used Facebook to share updates with family and friends. She started a blog, BetsyVersusCancer.com, for more in-depth, emotional reflections. On Twitter, under the moniker the Fighting Loaf (a friend coined the name after Graca complained she felt like such a loaf, watching shows in bed after treatments), Graca began broadcasting a rawer take. She soon gained several thousand Twitter followers, mostly strangers who are cancer patients and their caregivers.

Graca found comfort in bringing others into her experience, so it felt like they were going through it with her. Her followers have appreciated Graca putting words (and the occasional meme) to hard truths and the validation they get from her emotional honesty. Even her oncologist can't help but read.

"I feel like I have nothing to hide, and there's something really liberating about that," Graca said of her unusual decision to share so publicly. "I suppose that's part of the comfort behind it, too: just letting people know that this could happen to anyone."

One morning in July 2020, Graca woke up with double vision. She and her boyfriend planned to discuss breaking up that day, so she chalked it up to stress. The parting was amicable, but the double vision stayed.

The next day, scans revealed a tumor, which Graca soon had surgically removed. "I was like, 'Let's just get this out and move on with my life. It'll make for great story,' " she recalled.

While recovering, Graca received the results of a full-body scan: multiple malignant tumors in her liver and spine. She shared the news on Facebook — the tumors were malignant — without really understanding what that meant. "It wasn't until someone replied, 'cancer sucks' that it really hit me: It's cancer," she said.

Graca had no family history of cancer and didn't really know anyone with the disease. But she found hope in one oncologist's words: "He said, 'Our goal is going to be to keep the cancer under control as long as we can. And then hopefully one day we can cure the incurable.' "

If you scroll through Graca's social media posts from 2019, images of fluffy cats and rock concerts suggest her life was all cocktails and sunsets. Then, suddenly, the gal-about-town is wearing an eye patch.

Learning that you have cancer at 34 is very different from being diagnosed at 66, the median age at which the disease is detected. (The lifetime risk of being diagnosed with cancer is about 40%.)

It's been especially jarring for Graca to face her own mortality at a time when her friends are getting married and having kids. "It's funny, so many of the symptoms and side effects from cancer treatments are similar to pregnancy," Graca said. "So my friends will have the same energy level or back pains or nausea. But the difference is that after nine months they get a cute little baby, and I'm just fighting to live."

Prior to the pandemic, Graca was hitting her stride, career-wise. But then COVID took her lucrative contracting gig. She continued freelancing after her diagnosis, but soon found she was unable to work, which devastated her finances.

Often, young adults with cancer turn to their parents for support. Though Graca's father and two older brothers live nearby, Graca's mother — once the family's primary caregiver — had been living with early-onset Alzheimer's for years.

While Graca's two raccoon-sized cats are good for snuggles, they can't grab a fresh ice pack or give rides the way a roommate might. But the upside of taking full responsibility for managing her own care, Graca noted, is that she's become a better advocate for herself. She usually attends her appointments alone, even after pandemic restrictions were eased. "I don't want to put that burden on someone else," Graca said. "And I feel like it's more work if I have to be strong for them."

The internet offers an abundance of resources for the medical side of cancer, but little for the psychological and relational aspects: how to cope, how to tell others, how to rally them around you.

Graca found the local chapter of Gilda's Club for young adults with cancer to be helpful, along with a cholangiocarcinoma patient group on Facebook, which has allowed her to reach a small population of patients who know exactly what she's going through. Members have offered valuable information and emotional support — even mailing cards and gifts.

But since most patients are a generation older, their posts tend to be conservative in tone and religious in nature, which don't resonate with Graca. In a realm infused with sadness — every login could bring news that another member got their "angel wings" — she welcomed the comic relief in the morbid jokes or sarcasm that younger patients shared online.

So on Twitter, as the Fighting Loaf, Graca put it all out there, documenting everything from worrisome scan results to insurance hassles to a well deserved trip to Puerto Rico.

Her posts offer quirky humor: "All week I've had "🎵 I'm a chemo girl, in a COVID world 🎵" stuck in my head."

Dark humor: "Geez, the sad solo violin playing in the cancer clinic today is just a little too melancholy, if you ask me. I'm not saying a mariachi band would be better, but it feels a bit too much like the sinking Titanic in here."

And utter darkness: "Feeling scared about my future, or lack of one. Especially upon learning there's up to a 20% chance of having a fatal stroke in the next few months."

Graca's Twitter takes are less filtered than the Facebook updates for those she knows well. "If I Tweet about being up in the middle of the night reading clinical trials, that would make real-life people on Facebook really concerned about me," she said. "Whereas on Twitter, there's sympathy without triggering worry, because they're strangers and they can't do anything about it."

In the virtual world, Graca can mine hilarity from her awful enemy, to gain the upper hand. For example, after completing radiation treatments — which required wearing a custom mask, like a straitjacket for the face — Graca posted a celebratory video of herself sawing, running over, and burning the torturous device.

Graca's friend Kirsten Chepeus, of Prescott Valley, Ariz., whom she connected with through the Facebook patient group, said Graca's spunky response was a refreshing contrast to most patients' tendency to keep their suffering under wraps.

Among the hundreds of people in the Facebook group, Chepeus noted, no one had ever shared anything like Graca's video. "And I think that's really sad," she said. "Because it's so scary when it's happening to you. And if one person would just show that they got through it, and this is how, it could really help."

Cancer caregivers (both personal and professional) who follow Graca have gained a better understanding of living with the disease. Not just the pain, exhaustion and other physical effects, but what Graca describes as its less-discussed toll on mental health.

Recently, the stress of anticipating a high-stakes oncology appointment sent Graca to the E.R. with a full-blown panic attack. Despite feeling somewhat ashamed, she posted about the event to reassure others that their anxiety was normal. "I feel very comfortable putting myself out there knowing there are other people who would say, 'I've been there,' " Graca said.

Graca's openness also encourages discussions about difficult things, including death. Her longtime real-life friends say that her approach encouraged them to be more involved in rallying her support network, with everything from check-in texts to grocery gift cards.

Graca's brother, Michael, hopes his sister's experience moves people to get comfortable with the uncomfortable. "We as a culture need to get back into a relationship with death and suffering and pain and be able to help each other," he said. "Instead of reacting to someone suffering with: How does this affect me? Think about how it affects them. And be open to be comfortable listening to whatever they have to say."

For about a year after Graca's initial treatment, the cancer was under control. All her tumors seemed to be dead, and no new ones had appeared. She toured the West Coast and walked 10 miles around San Francisco. Her double vision improved. She anticipated going back to work and dating again.

But a scan this spring showed Graca's cancer was progressing. It was 2020 all over again: The eye patch returned, plus more surgery, radiation and chemo. Then, in December, Graca's mother passed away.

In spite of all this, Graca continues to pursue aggressive treatment, which could mean immunotherapies, clinical trials or "compassionate use" access to untested therapies. "I want to fight this," she said. "The fact that my case is such an anomaly gives me hope that maybe my outcome will be an anomaly."

Most of the few patients whose cholangiocarcinoma has metastasized to the brain have only lived a few months. Graca just hit the two-year mark.

And so she lives in an impossible place: acknowledging that the odds are not in her favor, while maintaining hope that she will defy them. All the while, she's aware of her role as the protagonist of a hero's journey, and the expectations that brings.

"There were times where I was looking to be a rare unicorn," she said. "I'm starting to accept that that might not be the case. And I've worried about disappointing people, as weird as it sounds."

But Graca's ability to inspire people is less about how long she might live than what she's already accomplished. Graca's "gift to the world," Chepeus noted, is sharing a story that will continue to help others long after her final post.

"We all have some variation of feelings like she has, and experiences like she has, and not everybody is as brave as she is to just put it all out there," Chepeus said. "Her story will be there for other people who may have been diagnosed at around her age and just feel lost. They could always go back and see how Betsy did it."