On the top of his buzzed head, Kenya Wheeler has a thin, almost unnoticeable line where his hair does not grow — a surgical scar that reminds him that he, as a brain cancer survivor, will always have to live with the fear of relapse.
For the last seven months, the 38-year-old UC Berkeley graduate student in city planning has gone through countless medical procedures, taken numerous drugs and has been hospitalized for weeks at a time to treat primary central nervous system T-Cell lymphoma — a rare, high fatality rate blood cancer in the brain.
“There’s not really any documented cause with this disease — it just happens,” Wheeler said. “You can’t trace it back to genetics … that was really kind of unnerving.”
Last week marked the end of chemotherapy for Wheeler, who is now recovering at his Oakland home. His recent brain scans show no sign of cancer, which will be reconfirmed through a round of tests and scans.
But nearing the end of his treatment at the UCSF Medical Center in early spring, Wheeler received the news that he had maxed out the $400,000 lifetime cap on the systemwide UC Student Health Insurance Plan (SHIP) offered by the university. As it stands, he is looking to pay $14,000 out of pocket, he said.
Wheeler’s medical journey first began when he experienced three seizures last August and was rushed to the hospital, where doctors later told him he had a malignant tumor that needed to be treated immediately. One month later, Wheeler was on the operating table at Alta Bates Summit Medical Center in Berkeley. “It came to me … that there is not much I have control over,” he said. “This is outside of my hands. I literally had to let go. Let the doctors, let medicine do its thing.”
According to Kim LaPean, communications manager at the Tang Center, SHIP will gradually align to meet the benefit requirements of President Obama’s Patient Protection and Affordable Care Act, which does not allow a lifetime maximum cap starting in 2014.
As mandated by U.S. Department of Health and Human Services on March 21 this year, the 2012-13 school year will be the last year in which SHIP will have a lifetime maximum cap. The plan will increase to a $500,000 per year cap starting in the fall of 2013, and there will be no annual limits starting in the fall of 2014, LaPean said.
“The goal is to provide the best possible coverage to meet the most needs of the students, while keeping the plan affordable,” LaPean said in an email.
But for Wheeler — whose student insurance has now been exhausted because of the current policies — the next part of his life is to find a job and insurance that will cover his medical expenses. Though he applied for the state’s public insurance option back in February, there has been no response as of yet, he said.
Since the onset of his illness, Wheeler’s girlfriend of three years Ruby Reid updates a blog for friends and family to keep track of Wheeler’s progress and donate money to cover his medical bills, raising $550 so far, according to the website.
Last month, Wheeler and Reid were driving to the hospital for his final chemotherapy treatment when the finality of the seven-month journey hit them.
“People can die from this (treatment),” he said. “It makes everything real. It forces you to be present. And she said, ‘What if we got married?’ And I said, ‘You know, let’s just do this.’”
The two were married in the hospital’s meditation room that afternoon, before Wheeler had his last dosage of radiation wiping his bone marrow clean. They bought a bouquet of flowers, borrowed a ring from a friend, and jumped over the broom, literally.
On top of marital bliss, there is the hope that Reid’s insurance will be able to cover Wheeler’s future doctor visits and procedures.
Though the issue of insurance has placed a huge burden on the newlyweds, the couple have something to look forward to. Wheeler plans to finish his master’s degree at the end of this semester after having taken a break from school while he underwent treatment.
In July, Wheeler and his wife plan to have a wedding ceremony and community celebration for family and friends.
“We don’t know how much time we have in our life to do things,” he said. “Cliche, but it’s really true. You really have to live to make every day important.”
Weiru Fang covers Berkeley communities.
A previous version of this article incorrectly stated that the 2011-12 school year will be the last year in which SHIP will have a lifetime maximum cap. In fact, Fall 2013 will be the start year of the $500,000 per year cap, and Fall 2014 will be the start of having no lifetime maximum cap on student health insurance.