Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on April 3, 2024 in AdvocacyEOY, Glioblastoma, Event Participant
In the fall of 2008, Bridget’s husband, Rich B., unknowingly drove through red lights on two different occasions, found himself lost while driving to work, and could not remember how to get to a meeting in the same office building he had worked in for 24 years. He was confused and very scared. He met with his doctor, who ordered an MRI. It revealed a brain tumor.
“We got home from the emergency room at Johns Hopkins that night, fell asleep, and I woke up in tears,” Bridget said. “I have never felt such despair because Rich was everything to me.”
Bridget and Rich’s brain tumor experience began in their early 50s, three decades after meeting and falling in love over four years at Penn State.
“When you’re that young, you’re not thinking about a brain cancer diagnosis when all of a sudden it’s there,” Bridget said. “You’re not thinking about retirement, Social Security Disability medical insurance, and FMLA. What is it? How does it work? Do I get paid? All of these are suddenly front and center. It’s scary. We had to plod through all that in addition to what the disease was doing to Rich and all the other decisions that you have to make on a daily basis. It is overwhelming.”
Rich began his first clinical trial as he wrapped up the standard of care treatment for glioblastoma (GBM). Bridget initially grappled with misconceptions about clinical trials, but they decided to move forward.
“I never really understood clinical trials up to that point,” Bridget said. “Words like placebo and experimentation came to mind — not that they said that, but these were terms I heard growing up. It was uncharted territory for us, but we trusted our doctors and followed most of their recommendations.”
The couple pursued any possible option available to Rich, ultimately enrolling in four major clinical trials suggested by his medical care teams at Johns Hopkins Hospital and the National Cancer Institute at the National Institutes of Health.
“I was hopeful my Rich would be the one to beat GBM, but we knew what we were facing,” Bridget said. “We were ready to try anything. If we reached the point where a clinical trial didn’t seem like it was working, we kept pursuing other trials.”
Caring for someone with a brain tumor can present many challenges for caregivers like Bridget, including the physical demands, emotional ups and downs, and difficulties navigating through finances and the health care system.
“Going through this brain cancer journey for me and Rich — and I’m quite confident for anybody else that’s traveling through it — is very much a team health issue,” Bridget explained. “We have the patient who gets a whole lot of attention from doctors, nurses, social workers, etc., as it should be. But we do very little for the caregiver to help them take care of themselves as they go through this.”
Through a local support group, Bridget learned valuable insights that helped ease some of the burdens she was experiencing, including trying to help her husband to the bathroom at night.
She shared, “A person in the meeting whose husband had GBM said, ‘Did hospice talk to you about condom catheters?’ Never heard of it. We got them, and it made a huge difference. I didn’t have to get up a couple of times at night.”
Learning from fellow caregivers made a difference to Bridget to ensure she honored her husband’s wishes to enter hospice at home.
“Rich really wanted to die at home,” Bridget shared. “That was so important to him, and I was determined to make that happen. He died on a Monday afternoon while my sister, my brother, my aunt, his brother, and I were there listening to jazz. He opened his eyes and took his last breath. It was very peaceful. If you can be there for somebody at the end of their life, as hard as it is, it’s such a gift to them and to you.”
How Rich lived with glioblastoma left an indelible mark on his family and friends from diagnosis through death.
“His friend said, ‘Rich showed us how to live, and he showed us how to die,’” Bridget shared. “I think that is so apropos because he brought a lot of joy to this world and certainly to my life.”
Fifteen years ago, Bridget’s cousins formed a Race for Hope DC team in May 2010 after Rich’s diagnosis.
“When we turned the corner at Race For Hope and saw 85 friends and family from all over the country, it was amazing,” Bridget said.
Their team Basehoar’s Brainiacs and Maine-iacs raised over $25,000 that first year. Since then, Bridget’s community has rallied to generate more than $230,000 in donations to the National Brain Tumor Society in his memory.
“People remember Rich in such a beautiful way — all these years later,” Bridget said. “It’s quite a legacy he leaves behind and a wonderful tribute to the great human being that he was. I miss him so much.”
Bridget continues to support other patients and care partners in navigating the brain tumor experience.
“I want to do all that I can to help the cause and, selfishly, I suppose, it helps keep Rich’s spirit alive for me in many ways,” Bridget said. “It’s very important to me to share Rich’s experience with people and give them hope. I want people to know that there really are good things that come from a terrible situation like this. It brought out the best in our family and friends, who supported us throughout the toughest time of our lives. I hope they feel the love from people.”
After years of fundraising, Bridget decided to take action at Head to the Hill, NBTS’s signature advocacy event in Washington, D.C.
“This past year was the first year I did advocacy on Capitol Hill in person,” Bridget said. “I loved it, and I will continue to do it.”
Bridget brought photos of Rich’s brain cancer journey and shared them in her meetings with members of Congress and their staff.
She shared with one representative, “Here’s what the National Brain Tumor Society is telling me that we need from you, and here’s the figure. What I’m telling you is we need more. We need more money because this isn’t working, and we need a cure. I know you have a lot of people who come to you every day, asking for something, but this is my husband, and this is our story. I don’t want anybody to have to go through this.”
In all that Bridget does as an advocate and fundraiser, she aims to honor Rich’s memory and give hope to others in the brain tumor community.
“The main reason why I am so dedicated to this cause and Race for Hope is that without hope, we have nothing, and I want to instill hope in people with brain tumors and for their families who are going through this,” Bridget shared. “When we lose somebody to glioblastoma, we have to go on, and we can. It’s not easy, but we can thrive and do great things to help other people in this community.”
Find community at the 27th annual Race for Hope DC on Sunday, May 5! Come to Freedom Plaza for a morning filled with connection, hope, and purpose as we raise critical funds to drive discoveries forward.
Your community is here. Let’s discover a cure, together.
Clinical trials provide early access to potentially beneficial treatments, advance science, and play an integral role in developing new and improved treatments for brain tumors. Often, the lengthiest aspect of the drug approval process is finding people to participate in trials, even though the National Comprehensive Cancer Network (NCCN) believes the best management of any patient with cancer is a clinical trial.
This month, NBTS launched a new campaign called MyTumorID to educate patients and care partners about the importance of biomarker testing and clinical trials in navigating one’s treatment options following a diagnosis. Together, we are working to equip more patients and their loved ones with information that empowers them to make the most informed decisions about their treatment. Sign up to receive information around biomarker testing, clinical trials, and more, including updates, educational materials, ways to raise awareness, and future action alerts.
TAGGED WITH: brain cancer, GBM, glioblastoma, Head to the Hill