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READ MOREPublished on May 16, 2023 in Event Participant, Brain Tumor, Patient, Stories
A brain tumor diagnosis in 2014 quickly grounded Dace H.’s fast-paced job at a technology start-up. The life change pushed Dace to slow down and focus on the things that mean the most to him — spending time with friends and family, being in nature, and exploring his creativity through writing and photography.
From there, he started an event photography business, eventually choosing to leave his apartment rental and build a minivan camper and travel North America.
“I’ve thought a lot about what it means to live a meaningful life since my diagnosis, and it almost always comes down to being present, appreciating where I am,” Dace shared. “It’s really hard to do that if I feel like I’m constantly piling more and more on my plate just to pay the rent, so that’s part of what led to this nomadic lifestyle. I’ve been doing it for the last few years now, and while it has its challenges, it’s been quite rewarding.”
While working for a technology startup in San Francisco, Dace’s role transitioned from in-person product demonstrations and presentations to back-end office support — spreadsheet work and data analysis – for the sales team in an area where he had little prior experience.
“It didn’t seem to matter what I was doing,” Dace explained. “I was struggling with making sense of the data, strategizing, and planning things.”
At the same time, his then-partner started noticing strange episodes where Dace would stop breathing while sleeping and then come to as if he was coming up for breath after being underwater. He also experienced a few moments of bolting up in the middle of the night from a dead sleep, yet unable to move his arms or breathe.
“I would hear this super loud buzzing in my ear,” Dace said. “My eyes were wide open — I could see my body but couldn’t move it. I was paralyzed and shaking at the same time. It was almost like I grabbed onto a live electric wire, and I couldn’t let go. Then, all of a sudden, it would stop, and I would drift right back to sleep. Looking back now, I should have gone to the doctor, but I thought I was just stressed out from my job.”
It took experiencing an awake seizure in front of his stepdad and brother on Dec. 27, 2014, for Dace to be rushed to the hospital by EMTs and undergo an MRI.
“They confirmed that I had a brain tumor, and it was going to need immediate surgery,” Dace said. “It was a total shock to me. I had never had any symptoms prior to that outside of those nocturnal episodes. Looking back and knowing what I know now about the right frontal lobe, which is where my tumor was located, it impacts executive functioning. That’s the area responsible for strategizing, planning, and trying to figure out the order of operations. It’s difficult to know how much of my struggles at work were natural growing pains from being challenged to develop new skills on the fly with little training and how much was from my brain tumor, but I know it played a big role.”
Dace underwent surgery in Phoenix, where he had been visiting family. After recovery, he returned to San Francisco and connected with the neuro-oncology clinic at the University of California San Francisco (UCSF). Their pathology team reviewed his tumor tissue sample and determined it to be astrocytoma (grade 2).
After his surgery, Dace struggled to focus on more than one thing at a time. Task switching was complicated, and he had to learn how to work with that.
“I dabbled a little bit in meditation before my first diagnosis in 2014, but it was nothing serious,” Dace said.
A few months after surgery, Dace attended a series of workshops with his then-partner, where they learned about neuroplasticity and how self-compassion meditation can help rewire the brain to relieve suffering.
“It helped me build a much better toolkit for when hard feelings or challenging situations come up, especially discomfort with uncertainty, which is something we all face but is now an especially prominent part of my life,” Dace explained.
“Discovering the power of meditation and presence of mind was about survival,” Dace shared. “I had to find a way to be OK with just focusing on one thing at a time because cognitive overload overwhelms me if I have too many things going on. It’s due in large part to where my tumor was. It was a detriment to working in a fast-paced technology environment, but it’s an unexpected gift for building relationships and appreciating life. While I still struggle with distractions and cognitive overstimulation, I’ve worked hard to reframe my challenges as a benefit — one that allows me to be hyper-present wherever I am or whoever I am with.”
For six years, Dace’s scans came back clear, allowing him to focus on living a life aligned with his values.
“With every scan I had, I thought I was further and further away from this thing,” Dace admitted. “It felt behind me until a routine scan in 2021 showed a little activity. My neuro-oncologist suggested that we do another surgery, which surprised the hell out of me. I was scared, frustrated, and angry.”
The pathology from his second surgery came back as astrocytoma, IDH-mutant (grade 4).
“For those six years that I had clean scans, I would talk about it as though it was in the past,” Dace said. “I remember talking to my friend Phoebe after my recurrence, saying that I don’t want to be caught off guard again. This is a part of my life. This is a part of who I am. I want to stay close to this. I want to do what I can now to let others know that this happens to young people. It doesn’t just go away.”
Dace actively pursued groups and events in the area to stay connected to the brain tumor community. He first joined the UCSF Neuro-oncology Survivors’ Peer Support Program, which pairs trained survivor volunteers with newly diagnosed patients. The group of trained survivor volunteers — called the UCSF Thrivers — meets weekly to continue learning, practice skills, and support one another. It was through one of their Zoom sessions that Dace first learned about Head to the Hill and the Northern California Brain Tumor Walk. It also led him to invest his time in the brain tumor community by co-creating and facilitating the peer-led UCSF Young Adult Brain Support Group.
Cancer as a whole sucks, but there is something really unique about brain cancer. A brain tumor has the ability to impact so many different areas of your life at the same time, including your identity and your ability even to be able to navigate the world in a meaningful way. It’s so poorly understood. Compared to other cancers, there is less funding, less attention, and less awareness about what the brain tumor experience is.
Attribution: Dace H.
Upon hearing about Head to the Hill from one of his fellow peer mentors, Dace jumped at the opportunity to participate in NBTS’s signature advocacy event.
“I thought it was right up my alley,” Dace said. “It’s activism. It’s action. It’s community. It’s integrating this part of my life that I had been trying to ignore.”
While undergoing chemotherapy following his second surgery, he attended the virtual 2022 Head to the Hill event. Dace and his fellow advocates spoke with their members of Congress and their staff, shared their stories, and urged policymakers to take action to meet the urgent, unmet needs of the brain tumor community.
“There’s something incredibly special about working together toward a common goal — it’s one of the most beautiful parts of being human,” Dace said. “Head to the Hill creates an opportunity to do just that with a topic that is so often saturated with heartbreak. The sense of community, connection, and the impact I felt was life-affirming.”
Following Head to the Hill, Dace joined a team a for the Northern California Brain Tumor Walk that was started by a friend in the peer support program. He started sharing openly and honestly about what he was doing on social media. Before he knew it, Dace raised about $9,000.
“I had never really fundraised before, but I knew this was something I cared about,” Dace shared. “We need more funding to try to understand how different brain tumors and brain cancers operate and develop unique and novel strategies, but there is also a critical need for psychosocial support. NBTS does both of those from different directions.”
Not only do funds raised from NBTS events like the Northern California Brain Tumor Walk help advance research, but these events bring the local brain tumor community together to honor and develop meaningful relationships.
Today, Dace and his partner Jordan have intentionally crafted an unconventional relationship and lifestyle that meets their individual desires for a balance of commitment and autonomy. They travel North America in their respective vans — sometimes together, sometimes apart. They enjoy hiking, photography, live music, visiting loved ones, volunteering, and savoring the feeling of a life that allows them the freedom to be where their hearts desire.
Come together with members of the brain tumor community for the Northern California Brain Tumor Walk at the San Francisco Zoo on Saturday, June 10, to spread awareness and raise funds to fuel the breakthroughs ahead.
“The more research and funding that we can get, the better to help impact people’s outcomes and hopefully understand how to eliminate brain tumors,” Dace said. “In the meantime, at the very least, helping us live meaningful, full lives while carrying the burden of the tumor is really, really important.”
TAGGED WITH: brain cancer, Cancer, Brain Tumor Awareness Month, astrocytoma, meditation