Ep 77: Finding Calm Waters, Chris's Experience as a Glioblastoma Caregiver-the Patient From Hell Podcast
In this powerful episode of The Patient From Hell, host Samira Daswani speaks with Chris Schuler about his deeply personal journey as a caregiver, navigating the emotional and logistical challenges of his father’s glioblastoma diagnosis. Chris shares the profound impact of neurodegenerative diseases on families—the confusion, the heartbreak, and the overwhelming process of maneuvering through the healthcare system. The conversation highlights the urgent need for greater awareness and advocacy in neuro-oncology, shedding light on the limitations of the ‘standard of care’ and the importance of pushing for better treatment options.
About Our Guest
Chris Schuler is a passionate advocate for brain cancer awareness. As the primary caregiver for his late father, Donald Schuler, who was diagnosed with glioblastoma in 2021, Chris has dedicated himself to supporting patients, caregivers, and research initiatives. He collaborates with organizations worldwide, amplifying their mission and fostering key relationships to improve patient outcomes.
Chris recently completed a year-long consultancy with the Cure Brain Cancer Foundation, an Australian nonprofit focused on advancing brain cancer research. He currently serves as a Venture Partner at Varia Ventures, where he raises awareness for emerging venture funds dedicated to groundbreaking discoveries in brain health. Additionally, he works with SageMedic, a precision oncology startup that helps patients find the most effective cancer treatments.
For Chris, caregiving doesn’t end with loss—it evolves. He continues to honor his father’s life, legacy, and memory, ensuring that his advocacy makes a lasting impact.
Check out the article Samira referenced towards the end of this episode here.
Key Moments
33 minutes:
“From that very moment, I went from being a lot of things in my life, being a son, a nephew, a grandson, a friend, eventually an uncle, a husband, a father. Now I am a caregiver. I want to say nothing prepared me for that. Everything prepared me for that. The way I was raised, everything I experienced in my life, every up, every down, every victory, every rejection, everything led to this moment where I am now my dad's caregiver with my mom. I call myself the primary caregiver because there was something she couldn't do for him, and how do you become an advocate? How do you take on what seems insurmountable? And I say to any listeners, you can do it. You have what's in you to do it, to be the very best caregiver, because all you need is one prerequisite to be a caregiver. You need to be able to love. If you can love, you are a caregiver.”
36 minutes:
“The best piece of advice I got was through a mentor through the American Brain Tumor Association. She asked me during my dad's illness, what are you doing to find joy during this journey? And I thought at first that that question was the dumbest question I had ever heard. What joy? What do you mean joy? My father is dying. I am trying to keep him alive. He's having seizures. There's no joy here. And she asked me that question and it reframed how I should be thinking about this and what I could do to find joy. So my advice is something that at first when I heard it I thought it was awful and maybe the caregiver listening today may be able to relate to that, but find joy.”
40 minutes:
“There are some really great resources out there depending on what your need is. If your need is emotional support, grief support. There are support groups tied to national nonprofit organizations and local ones if you need financial assistance. There are so many resources out there, and at times it feels like you can drown in them because there are so many. My advice is pick two or three. Don't go crazy looking for every single answer out there. Pick two or three that look good. And if I can plug a couple, Samira, I will. The American Brain Tumor Association, the Brain Tumor Network are two that stand out immediately as ones that can at least help provide some initial support when something like this happens and give you some tips on where to go next.”
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