After loss, parents of lung cancer patient take each day as it comes

December 20, 2022
a group of young people pose for a photo, surrounding a smiling young woman wearing a bright red scarf on her head
Kelly Bulak, center, with red headscarf, surrounded by friends at a fundraiser in October 2021, a month before she died. Photo provided

Kelly Bulak needed more … more time with her family and friends, more of a chance to pursue her passion for historic preservation and her love for travel, more of an opportunity to strike up conversations and to go to baseball games. Most of all, Kelly needed better – better treatments for the lung cancer that was diagnosed when she was only 29 years old.

In the end, the best therapies available gave Kelly one good year – a wonderful year, filled with travel and friends and learning, yet wholly inadequate when measured against the life Kelly should have lived. And then, after that good year, a couple more not-good months. Those last weeks and days haunt her parents, Jim Bulak and Pam Bulak, who are left to navigate the world without their only child.

a smiling young woman sits cross legged on a bench at the beach with a bright red scarf on her head 
Kelly Bulak traveled with friends and family, served as a bridesmaid and continued her studies during the year she was treated for lung cancer. Photo provided

Completely frustrated in her last days, Kelly lamented, “With all the billions of dollars in the world, how come they can’t find a cure for this?” Jim recalled.

Lung cancer research has been inching forward. In 1990, the year that Kelly was born, the five-year survival rate for lung cancer patients was 13.4%. By 2018, the five-year survival rate had increased to 23%. That’s progress, but it’s hardly comparable to other cancers, and much of the improvement can probably be attributed to the fact that fewer people smoke. Yet Kelly never smoked. She was part of the 10% to 15% of lung cancer patients with no smoking history.

John Wrangle, M.D., Kelly’s doctor, is intimately familiar with the statistics. He’s an MUSC Hollings Cancer Center physician-scientist who both treats people with lung cancer and runs a lab looking for new immunotherapy treatments for lung cancer. He’s been part of amazing success stories with some patients, but, unfortunately, a common part of his job is delivering bad news. The hope of spreading those success stories to even more patients keeps him soldiering onward in the lab.

This month, Kelly’s parents presented Wrangle with a check to fund more research. Much of the money came from a GoFundMe that her friends had set up to cover expenses during treatment. Pam said that by the first weekend, it had raised more than $25,000 as Kelly’s friends from all over the world chipped in. Later, they held a fundraiser at a local brew pub and raised more than $10,000 for Kelly’s expenses. But Kelly barely touched the money. She had an Affordable Care Act insurance policy when she was diagnosed, Jim explained, which covered many expenses, and MUSC covered the rest through a financial assistance program.

two men shake hands in an outdoor patio 
a young man puts his arm around a woman who leans into him as they both focus on someone out of camera range 
Top: Jim Bulak, left, and Dr. John Wrangle shake hands at an intimate gathering of friends and supporters to present a check from Kelly Bulak's estate to fund lung cancer research. Bottom: Pam Bulak leans into Kelly Bulak's friend, Bobby Sommers, while listening to Jim's recollections. Photos by Clif Rhodes

Wrangle told a small group of Kelly’s friends and family gathered for the check presentation ceremony that the money would fund high-risk, high-reward research that wouldn’t get funded through conventional sources like the National Cancer Institute.

“Twenty thousand dollars is going to fund an entire project in my lab,” he said. “I have lab scientists working on projects targeting events that are peculiar to nonsmoking-related lung cancers. This makes that research possible. Twenty thousand dollars will fund the most high-risk science that I can do – swinging for the fences kind of research.”

Besides Wrangle’s research, Kelly’s parents, following Kelly’s wishes, have used funds from her estate to donate to the Hollings patient support fund, which helps patients with financial needs, and to establish an endowment for summer internships for students in the Master of Science in Historic Preservation program at Clemson University in Charleston, where Kelly was enrolled when she died.

a smiling young woman sits in a waiting area 
Kelly Bulak's cheerful presence was well-known at Hollings. Photo provided

Working on all of these projects – determining the donations, figuring out what to do with her condo, downloading and cataloguing the thousands upon thousands of photos on her phone – has given Jim and Pam something to fill the time over the past year. Jim also joined the Hollings Patient Family Advisory Council, where he hopes to smooth out for other families what were painful experiences for him. For example, when they realized that Kelly didn’t have long, they had to scramble on their own to find an attorney who could come to the hospital to draft a will for her. Jim pointed that out to the council, and now the group is working with the local bar association to develop a list of willing attorneys.

Yet keeping busy helps but only so much with the grief. And the Bulaks, who are divorced but friendly, are each on their own as they deal with it. After the whirlwind of November 2021, Pam got sick and spent much of that December in bed. And, in fact, even when she felt well, it was hard to think of a reason to get out of bed.

“What’s the point without her, you know?” Pam said. “And it makes you relive other losses.”

During the height of COVID isolating, Pam had put herself on a list to get a puppy. As it turned out, the puppy came through just when Kelly was diagnosed. Pam was going to turn it down, but Kelly insisted that she get the dog. That turned out to be a good decision – the dog has brought her joy over the past two years.

So has connecting with Kelly’s friends, many of whom have become like surrogate children to Kelly’s parents. Pam and Jim are continually amazed by how Kelly not only made friends but kept them. She had friends from growing up, friends from school, friends from work and friends from her travels. And they were friends who showed up. They showed up for a fundraiser for Kelly on Oct. 9, 2021, when it still seemed like she might beat the odds. They showed up for her birthday after her death. They showed up at graduation, when Clemson posthumously awarded Kelly her graduate degree in Historic Preservation. And they have continued to show up, meeting with Pam and Jim for lunches and checking in with them via texts and phone calls.

“Every day is a struggle,” Pam noted. “You have to make yourself get out of bed. You have to make yourself take the dog for a walk. You have to make yourself call your friend or answer the phone. The pup and I walk a lot.”

There’s no standard timeline for grief, said Stacey Maurer, Ph.D., a clinical psychologist who works with cancer patients at Hollings. And there’s no way out except for through it.

“Grief is a very normal emotion,” she said. “Broadly speaking, the problem with grief comes when we create rules around it, like what we should feel or what we shouldn’t feel. It’s important to not judge your grief for how much it’s there or not there on a given day or to think, ‘I should be feeling this way,’ or ‘I shouldn’t be feeling that way.’”

a painting of a young woman drinking coffee looking out the window with a sparkle in her eyes 
Pam Bulak paints, though after Kelly died she stopped for a while. Eventually, she resumed painting and finished this portrait of Kelly that she had started while Kelly was alive. Photo provided

Jim and Pam have each tried to support each other as well as continue on with activities that they once enjoyed.

“Reading used to bring me joy, but I can't do it right now. But you’ve got to keep finding those things. So, getting out on my boat and fishing and hiking,” Jim said. “Walking and getting outside – those are things that can still bring you joy, especially if you can do them with friends. But, I now also realize that my heart will always have a big hole in it.”

They’re mindful that Kelly was an adventurous, generous soul who was always fun to be around and always open to life. She always said “yes,” they said – yes to dessert, yes to last-minute plans, yes to welcoming new people into her orbit. During her last stay in the hospital, she tried to impart that “yes” spirit to them, Jim said.

“She looked at me and said, ‘Now I want you to take that trip, and if it turns out to be a bad trip, you just schedule another trip.’ That was her attitude.”