Like many women her age, 21-year-old Alexis Kaufusi’s bedroom is decorated with memories.
Pictures of family and friends scroll through on a digital frame; a signed Jimmer poster and encased basketball jerseys from her own high school and college teams adorn the wall. Finally, framed and mounted for all who enter to see, is the central venous catheter and attached purple port that spent months in her chest, delivering the life-saving poisons of chemotherapy to her bloodstream.
A cherished badge of courage, Paisley, as Kaufusi calls the port, was removed in June after doctors confirmed she had achieved what they call complete response. This means her cancer cells are not currently active, and Kaufusi’s life can return to relative normalcy, as a student and member of the BYU women’s basketball team.
Kaufusi was averaging 4.9 points and 2.8 rebounds per game as a sophomore but had her season cut short in February when she was diagnosed with non-Hodgkin’s lymphoma, a cancer affecting the immune system. This disease, most commonly found in elderly patients, compromises the body’s ability to fight infection, among other symptoms.
In the whirlwind of emotion that followed her diagnosis, there was some relief, Kaufusi said. Relief, because they had finally found the culprit behind months of unexplained fatigue that tampered with her efficacy on the court and resulted in cuts to her playing time.
“Last summer we were doing conditioning for basketball and I was having a really hard time keeping up with the team,” Kaufusi said. “I was struggling to make running times, which was weird because I’d never had trouble before. I thought I was just really out of shape, but as the season came along, I was tired all the time.”
The coaches took note, and Kaufusi spent more time riding the bench, frustrated by her own inability to perform the way she wanted to. As a freshman, she’d played in all 33 games, logging an average of 16 minutes on the floor each night.
Kaufusi initially chalked up the fatigue to living in an apartment with her three best friends and trying to balance the demanding workload of a student athlete. It wasn’t until her little sister pointed out weird bumps on her neck that she started to suspect there might be something wrong.
Blood tests requested by her trainer came back negative for strep and mono but showed her white blood cell count was just a tenth of what it should have been.
A CT scan revealed nine tumors in the lymph nodes in Kaufusi’s face and neck, and biopsies concluded they were indeed cancerous. Originally, doctors told Kaufusi she had Hodgkin’s Disease, a more common and very curable form of cancer. It wasn’t until weeks later that it was amended to non-Hodgkins — the very form that took the lives of both her grandmother and great-grandfather — and staged at the most advanced level.
The upgraded diagnosis hit hard, Kaufusi said, but it was the six rounds of chemo that really took a toll.
“Chemo is everything people say it is and worse,” Kaufusi said. “We do ridiculous things for basketball, to the point where we are literally falling down after runs, but there is nothing more exhausting – mentally, physically or emotionally – than sitting there and having poison pumped into your body.”
However, Kaufusi said not all days were bad. In fact, the first three rounds went pretty smoothly, with almost no nausea, but when days were bad, they were really bad, and they stick out more in her memory.
A bone marrow biopsy; being drenched in sweat, trying desperately not to pass out from the pain as a special round of chemotherapy is administered via spinal tap; the sick feeling of knowing the red syringe full of what cancer patients call Satan’s Kool-aid is next on the IV; being asked to serve as a bridesmaid in a friend’s wedding and ending the evening violently heaving in the parking lot of the Riverwoods; the utter loss of independence.
After her diagnosis, Kaufusi moved back in with her parents, Michelle and Steve, who is a defensive line coach for BYU football. At the height of her treatment, Kaufusi’s mom kept a baby monitor nearby at all times.
“I had to depend on so many people to do so much for me,” Kaufusi said. “I felt so helpless having to call my mom just to help walk me to the bathroom.”
One of the most vivid recollections for Michelle Kaufusi came two weeks into treatment. The busy mother of five sat in her room, cradling her oldest daughter’s head and stroking her hair in what should have been a rare and intimate moment of calm. Instead, any supposed peace was displaced by heartache and fear as huge chunks of her daughter’s thick and billowy black locks came out in her hands.
“That was probably the hardest thing,” Michelle Kaufusi said. But rather than let her daughter see her distress, she rallied the family together. “Everyone took a turn cutting her hair,” Michelle Kaufusi said. “It was better for everyone to be hands-on through the whole process.”
That dedication to involving the family meant the youngest three siblings were routinely pulled out of school to make the trip to the Huntsman cancer clinic in Salt Lake City, where their sister received her biweekly treatments.
Even her brother Bronson, who is currently serving a mission in New Zealand, was able to participate in spirit – Michelle had a life-size cutout made of her 6-foot-8 son and brought it along to every chemo session.
“Bronson is my best friend,” Kaufusi said. “Going through this without him was really hard for me. Before his mission we were inseparable. There are times going through this, all I wanted was him. But he should be focusing on his mission. I know he’s thinking about me all the time and that’s very comforting.”
Kaufusi has also been able to rely on the support of friends and teammates, who have spearheaded several fundraisers and visited when she was too sick to leave the house. Chief among them was Kaufusi’s other best friend, Hannah Millar.
“My life became more about her than about me,” said Millar, who was wrapping up her senior year in athletic training as Alexis went through treatment. “I just knew that she was special and she was going to get through it. Nothing else was that important for me. I put a lot of things on hold because I knew that she needed that support … Alexis is very positive on the outside, but when she would talk to me alone she would let me know how she really felt about things.”
Tougher than watching her friend suffer pain was witnessing Kaufusi’s very personality change, Millar said. By her own admission, Kaufusi lost the drive to do much of anything.
“I just laid around a lot, which so isn’t like me,” Kaufusi said. “I didn’t want to eat. Everything had a metallic taste. I was very short-fused.”
The only thing that kept her motivated was the desire to get back on the court, she said.
“My thought was, I’m beating this cancer so that I can play basketball again,” Kaufusi said. “It makes me happy, and now that I think about it, I think [not being able to play] is a big part of why I was so not myself.”
Unable to muster the energy to do much else, Kaufusi kept a blog throughout her journey, drawing more than 50,000 page views from as far away as Iceland and the horn of Africa. It was here where she first shared the good news about her response and thanked her followers.
“Thanks everyone for the love, support, and the prayers,” she wrote. “It’s obviously working is all I have to say.”
Since then, doctor visits have been replaced by team practices, painful procedures by exhausting workouts, as Kaufusi, whose hair has also started growing back in, attempts to get back into playing shape.
“I’ve been working out with the team and it has been really good,” Kaufusi said. “I’m starting to get my strength back and I’ve been hanging out with friends, just trying to remember what it’s like to be normal.”
She’s also spent the summer rediscovering normal with her family, traveling to California and Canada at different points.
So fresh they can hardly be called memories, the anxiety-ridden moments that have defined the Kaufusi family’s life for the past six months have gradually begun to subside. The first battle is won, but the war is not over. Because of the type and stage of cancer, Kaufusi will never be cancer free, or even considered “in remission,” but doctors hope to keep it under control with careful monitoring. Most relapses occur within the first two years after therapy, so Kaufusi will continue to meet with doctors every 90 days for the next several years.
In just a couple weeks time, Kaufusi has her first major post-treatment checkup to make sure the tumors and cancer cells are not once again growing or spreading. She said she’s hopeful everything checks out for her to play ball this season.
“Hopefully I’ll be strong enough and able to make it through the season,” she said, noting that even now, every day is different.
“Some days I’m exhausted and I can’t even wake up until one in the afternoon and if I don’t get at least 10-12 hours of sleep at night I can’t make it through the next day,” Kaufusi said. “But I’m determined and I definitely feel better now than I did last season.”