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Finding the Light

Jillian Schlueter, 27, seems uniquely able to stare down the worst experiences and find something of value to bring back. Despite expressing her concerns about a mass in her breast, her care providers did not listen to these concerns and chose not to investigate further. After being diagnosed with stage 3 breast cancer in May of 2021, she’s been fighting for, and recommitting to, her survival. But the fascinating thing about Schlueter is that throughout her journey, even when close to death, she’s found knowledge about the importance of life and what it takes to find light in the face of difficulty.

Early on, Schlueter seemed destined to help others. Growing up in rural southern New Jersey, she fell in love with nature, wandering around the creek behind her parents’ house. She went to school for biology to become a veterinarian, but she felt a need to connect with people—a quality that sent her to nursing.

“It would allow me the time to spend bedside with the patient and really get to know them,” Schlueter says. While training in a hospital, she became a favorite of her patients because she took the time to stop by each of their rooms on her way out. She had found purpose in life as a caregiver—which is why her late-stage cancer diagnosis made it so hard for her to accept a sudden reversal of roles. 

Prior to her diagnosis, she spent a little over a year asking her care provider to check a lump on her breast, but she wasn’t given a screeningonly to be diagnosed one week after graduating nursing school. 

“Within one moment, one sentence—‘you have stage 3 breast cancer’—everything I knew got stripped away from me,” Schlueter says. 

It’s almost impossible to overstate the challenges Schlueter has faced as a result. Battling breast cancer can brutalize the body. She has had to make incredibly difficult decisions about her treatment, and each time, she has managed to affirm the value of her life. It’s a process that too many women who don’t fit into the standard idea of a breast cancer patientespecially those who come from marginalized and underprivileged communitiesmust tackle. And, for a growing group of activists and caregivers, it may be a process that fewer have to go through if greater access to cancer screenings can be achieved.

For Schlueter, treatment has not offered relief. Her body didn’t react well to chemo and her health deteriorated. She began having seizures, and experienced damage to many of her vital organs that continues to cause her pain. But, a constant caregiver, she says her primary pain is that of those around her. “When you have cancer, it doesn’t just affect you; it affects everyone around you. It spreads like wildfire, and it burns down everything that it touches,” she says. 

That’s why Schlueter has had to rely on an inexhaustible ability to find the good in life. When she found out her cancer might make her infertile, she delayed treatment a few weeks to go through an egg harvesting procedure. The trip to the hospital, where they managed to secure three viable eggs, is something she describes as exciting, as if she were having a child. She and her boyfriend Ryan Costello even picked out names. After chemo, her formerly long blonde hair grew back curly and brown. But she says she likes it; it makes her look like a flapper.

“I am a different person and I’m in a different phase and chapter of my life, and so I think it’s very fitting that I look different,” she says. 

When she had her most severe reactions to chemo, her oncologist has offered her the opportunity to forego treatment, to potentially accept death but live without the pain of side effects. Each time, Schlueter has struggled with the decision, but then committed to continue her fight.“The alternative to stopping treatment was that the cancer would kill me,” she says. “That was something that I could not come to terms with.”  

Her capacity for endless positivity faced its biggest challenge in July 2022, when things took a turn for the worst. She had gone through chemotherapy, a bilateral mastectomy, reconstruction and radiation by then, and her doctor had already told her she’d have to take chemo pills for the next 10 years to keep her cancer at bay. But Schlueter’s body, as it had with chemotherapy, reacted negatively. She was taken into the hospital, unable to walk due to colitis. Her condition grew worse. 

“I experienced a threshold of pain that most people probably will never experience in their life,” Schlueter says. “And then one day, I approached death.”

Against all odds, she started to feel better one day. She woke up and had breakfast with Costello. But then her breathing began to slow, rapidly, until Costello could see it had nearly stopped. He called the doctors, but started saying goodbye to her, asking her for a final kiss. The doctors arrived and were able to stabilize her, but the memory has stuck with Schlueter.

“Of course, it scares me,” Schlueter says. “But what really bothers me more than accepting my own fate is worrying about how it’s going to affect the people that love me.”

Schlueter combines her positivity with an emphasis on “keeping it real,” as one of her patients once told her. She understands that if the healthcare system had worked for her, and she’d gotten a screening early enough, it could have made a difference.

“I was just another demographic and looking at me, I’m a young female, and it would be very unlikely that I would have advanced cancer,” Schlueter says. “I did feel dismissed and unheard, and looking back, if someone took me seriously and listened to me the first time, it could have saved my life.”

While young women like Schlueter can go unchecked due to their youth, a lack of access to screening can be far more severe when it comes to marginalized communities. The screening gap is a widely recognized phenomenon in the healthcare community, where populations that have less access to healthcare—particularly marginalized and low-income groups—receive fewer screenings and present higher cancer mortality rates. That’s particularly concerning in regards to breast cancer, where early detection can make all the difference. “African-American and Black women tend to be diagnosed with breast cancer at a later stage,” says Dr. Amy Leader, an associate professor at Thomas Jefferson University who works on getting healthcare out into the community. “It tends to be less treatable, and it tends to be more aggressive, too.”

For many underprivileged groups, screenings can present as a difficult task rather than a part of a routine—especially when the healthcare system does not always ultimately reward them for their behavior. 

“One of the barriers that also exists is unconscious bias,” Dr. Carmen Guerra, professor of medicine at University of Pennsylvania, says. “The doctor might think that, because this woman has multiple pressures and jobs, that she might not be able to receive the latest cutting-edge therapy, which requires more visits, or higher intensity therapy.”

In the case of cancer survivor and advocate Caroline Jones, it was a matter of a different body type: Because of her physique and the fact that she is African-American, cancer did not present in the traditional way. She never saw a rash on her skin. But Jones was insistent that her healthcare provider check her because she sensed something was wrong. Fortunately, they caught the cancer in time. Now cancer-free, she advocates for everyone to get checked, and for doctor’s offices to better account for diverse identities.

“Since my diagnosis, I reach out to people. I encourage everyone, male or female, to go get tested,” Jones says.

It shouldn’t be all on the patient, however, to insist on getting checked. And there’s a strong community of advocates and caregivers in Philadelphia who are trying to change that—with solutions such as healthcare centers in the neighborhoods that most need care and free patient navigators that make the system accessible to patients. ACS has launched a website, cancer.org/get-screened, to help people find free screening locally.  

Schlueter’s personal solution has been to focus on the present. The trauma of her near-death experience in July has given way to a revelation: In the moment where she was faced with her potential end, she was at peace. 

“No one is ready to say goodbye to their life when they’re in that moment, but I was at peace,” Schlueter says, noting it made her realize that the way she has been living life, finding the positive in each small moment, has been the right way to live. “I realized that it’s about quality of life, not quantity of life.” 

Her body’s reaction to treatment is unique enough that it’s hard to know her chances of success. She has a few sets of plans for the future: some for if she’s here in a few years, and others for if she’s not. If there is a life post-treatment, she’s looking forward to getting into nursing—perhaps in pediatrics or the birth unit. If she isn’t here (“keeping it real,” she says) she’s prepared her family. This helps her with the worst struggle that she goes through, which is thinking about how they’ll feel when she’s gone. 

“I told them I don’t know what I’ll be able to do when I pass away, but if I’m able to, I’ll come and visit,” Schlueter says. “I would love to be a little fairy in the garden.” She’s told them places where they can find her: her family’s creek, her grandfather’s home, the campgrounds in central Pennsylvania. 

“When they can’t physically hug me they can at least just feel my soul,” she says. There’s one more silver lining for Schlueter: That telling her story, raising awareness, providing guidance, might leave an impact.

“I try to focus on making the most of each moment that I have with someone that I love,” Schlueter says. “And making sure that I’m being genuine and authentic, so that whatever memory that they’re left of me is good.”