How a UT Austin student turned a cancer diagnosis into fuel for fundraising,part II
Editor’s note: Jonathan Rienstra met Neil Gustafson when they were freshmen at the University of Texas at Austin. When Neil was a junior, he was diagnosed with testicular cancer and underwent surgery and chemotherapy to combat it.
For his final project in his feature writing class, Jonathan wrote about Neil’s ordeal, which culminated in his raising thousands for cancer research. What follows is the second of a two-part version of Jonathan’s college essay — his tribute to Neil and to Movember.
After his surgery, Neil had to decide how to continue his treatment. He went to Baylor Medical in Houston, where a urologist wanted to take more blood tests to see if his levels had gone down.
The first option was surveillance, which consists of testing the blood levels regularly. The second was a surgery called retroperitoneal lymph node dissection (RPLND). In RPLND, a foot-long incision is made in the abdomen to remove all the lymph nodes.
“The idea [of another surgery] was freaking out my mom and dad,” Neil says. “It seemed almost worse than the cancer itself.”
It is highly invasive and requires several weeks in the hospital and a two- to three-month recovery time. Neil compared it to having heart surgery.
“The idea was freaking out my mom and dad,” he says. “It seemed almost worse than the cancer itself.”
The surgeon at Baylor pushed for the surgery but also told Neil to seek other opinions. His other doctors believed that, because of Neil’s low levels and early surgery, surveillance would work. He opted for surveillance.
In the first blood test after having his testicle removed, Neil discovered that his levels had gone up. This meant that there were still malignancies in his body that needed to be treated. Neil had to begin chemotherapy.
Dr. Ajjai Alva, an oncologist at Baylor in Houston, put Neil on a BEP chemo regimen in the beginning of November. BEP is an acronym for the three medicines in the chemo cocktail: bleomycin, etoposide and cisplatin. He had three cycles, each one three weeks long.
On days one through five, Neil had to sit for seven hours a day while the BEP was pumped through his body. Because his doctors were in Houston, whenever a new cycle began, he would have to return home on Sundays.
His dad would drive him, Monday through Friday, to sit in a recliner in Baylor from 8 am until mid-afternoon. His mom and extended family would bring him lunch. He would spend most of his time watching Netflix on his computer.
Neil’s fair fell out, but he had already shaved it, when chemotherapy started. In fact, his pledge brothers shaved their heads too.
The drugs made him weaker by the day. “It was really shitty,” he says. “Out of everything, that was the worst part.”
Normally outgoing and energetic, Neil lost his appetite, and his fingers and toes began to tingle with sensitivity. His fair fell out, but he had already shaved it, when chemo started. In fact, his pledge brothers shaved their heads too.
“We decided to shave our heads just to let Neil know that we were going to be there for him for as long as it took,” Chad says. “We wanted to try and keep the situation off his mind.”
While he was undergoing treatment, Neil heard about Movember, which encourages men to grow out their mustaches during November as a way to raise money for cancer research. He couldn’t grow a mustache of his own because of the chemo, but Neil put his message on Facebook, asking friends and family to donate in his name.
His ZBT brothers picked up the cause as well. That year, Neil raised more than $1,200, and ZBT collected more than $4,000.
Neil underwent chemo from November to the end of December. When he was back in Austin between BEP treatments, if he wasn’t exhausted (which was most of the time), he would go out with his friends. But because he wasn’t drinking, he felt a bit on the outside.
“I would maybe have a beer, but it was weird because I wanted to be drunk with them. It was harder to talk to girls,” he says, laughing.
Neil maintained straight A’s while he was in Houston for treatment. “It was amazing that he was able to keep up with all of his work,” his dad says. “His strength was incredible.”
Still, he kept his spirits up. The last day of his third cycle of BEP was December 28. Throughout the holidays, he kept focusing on that day, knowing that as soon as he stepped out of Baylor, he would be on the road to normalcy.
Support from school
Neil says that UT was supportive throughout the ordeal. A lot of people who go through chemo drop out of school because it takes up so much time, but the UHS and UT’s Services for Students with Disabilities (SSD) talked to his teachers for him. Neil’s professors made sure that he would be able to complete the semester.
When he went to Houston for his therapy, notes were emailed to him and tests were moved around so he could take them when he was back in Austin. He maintained straight A’s through the semester.
“It was amazing that he was able to keep up with all of his work,” his dad says. “Chemo wasn’t easy, the way it took his energy away and affected his body. His strength was incredible.”
On December 28, 2010, Neil un-reclined from his chair in Baylor for the last time. New Year’s was right around the corner, and one of his pledge brothers, David, was coming up to visit him.
Every three months, Neil underwent blood tests to check if his levels had gone up, and every six months he has to get a CAT scan to check his lymph nodes.
So far, his levels have stayed in the non-cancerous range. Neil says a small fraction of fear resides in the far back of his mind and only comes out during the blood tests.
Neil was elected the philanthropy chair of his fraternity. He put together a concert with rapper J. Cole, to benefit Livestrong. It brought in more than $5,000.
“I’m 99.9 percent certain my tests are going to come back clean,” he says, “but you also have to expect for the worst any time you’re dealing with cancer.”
At the beginning of the next semester, Neil was elected the philanthropy chair of ZBT. He says that they were normally pretty relaxed when it came to raising money, but he wanted to change that.
While he had been going through his treatment, Neil video chatted with Lance Armstrong, founder of Livestrong, who told Neil to keep his head up. Livestrong also sent Neil t-shirts and hats as a way to keep up his spirits.
When it came time to raise money, Neil wanted to put together a concert to benefit Livestrong. ZBT invited rapper J. Cole to perform at their ZBTahiti party in March and raised more than $5,000.
Neil says that one of the biggest things that got him through the whole ordeal was a concert for which he had bought tickets before the cancer was discovered. He felt that if he could make it to Ultra, a three-day electronic music festival in Florida in March, it would be like the cancer had never happened.
By the time he boarded the plan to Florida, the only reminder of his cancer was his hair. Normally straight and black, his hair had grown back blond and wavy, a byproduct of the chemo. His hair has darkened since then, but there are still traces of curls that didn’t exist before.
But the mustache is what’s important here. It’s the end of Movember 2011, and Neil’s ’stache is still stringy. He had to grow one this year, all the way. He didn’t have an excuse this time.
His personal fundraising is a little less than it was the year before, but, overall, ZBT hit the $6,000 mark. All told, UT’s InterFraternity Council raised $21,115 for men’s cancer research.
For Neil, if raising that much money means growing out a wispy mustache one month a year so that others don’t have to go through what he went through, well, even Tom Selleck has to respect that.