Living with or caring for someone with a brain tumor is a confusing and difficult experience. The journey is unique because patients are confronted with standards of care including chemotherapies and radiation therapies, with known side effects familiar to other cancer journeys, yet this disease also presents with significant neurological disorders. Overnight, we have to become experts in the disease, treatment options, symptom management, and further complications that accompany this disease. The physical needs are so demanding that often the other challenges of living with a brain tumor involving our emotional and spiritual health, also daunting to deal with, are neglected. This can cause long-term consequences impacting the quality of life of the brain tumor patient and all those involved in their care.
Those who are familiar with the brain tumor experience know that there is nothing quite like it, and it can be difficult to relate to others living with serious disease or chronic illness. In order to provide more support for the brain tumor community, in partnership with the National Brain Tumor Society, we are excited to announce we are launching monthly Brain Tumor Virtual Support Conversations where patients and their care partners can talk about the brain tumor experience with others who are currently walking, or have walked, the path. We welcome patients and care partners at any stage of the brain tumor experience, from newly diagnosed to those who have lost loved ones. Calls will take place on the third Sunday of the month at 4 PM PT/7 PM ET.
Just as the disease and its treatment may progress over time, so, too, should the support for those on this journey. We look forward to learning about your experience, sharing with others, and collaborating to support you and your loved ones.
Please click here to be linked to the NBTS website for instructions on how to join!
Adam Hayden (@adamhayden) is a graduate trained philosopher, blogger, and speaker. In June 2016, Adam was diagnosed with the aggressive brain cancer, glioblastoma (GBM). Adam regularly lectures to both medical students and clinicians on topics related to medical education, bioethics, and narrative medicine. In 2018 Adam was awarded the Distinguished Alumni Award from the Indiana University School of Liberal Arts. Adam is active volunteer and state advocate with the National Brain Tumor Society (@NBTStweets). Through this affiliation, Adam attends scientific meetings and research roundtables, featuring clinical oncologists, researchers, and regulatory bodies. Adam co-moderates the Brain Tumor Social Media (#BTSM) monthly Twitter chat, (@BTSMchat).
Adam serves as a consumer reviewer for the Congressionally Directed Medical Research Programs (CDMRP) Peer Reviewed Cancer Research Program (PRCRP). He is a class of 2018 participant for the American Association for Cancer Research (AACR) Scientist-Survivor Program, and he is a class of 2018 ePatient scholar for Stanford Medicine X | Ed.
Adam documents his journey as a graduate trained philosopher living with glioblastoma at his personal blog, www.glioblastology.com. He lives with his wife and three young children, aged six, four, and two years old, in Indianapolis, IN, USA.
Lisa O’Leary (@lisaoleary524) is an attorney in California. She received her undergraduate degree from California Polytechnic State University in San Luis Obispo and completed her legal studies at Thomas Jefferson School of Law in San Diego. Since then, Lisa has had a robust and varied career, with practice areas including medical malpractice, insurance coverage, toxic tort, landlord-tenant disputes, personal injury, and workers’ compensation.
Lisa became an unwilling member of the brain tumor community when her husband Patrick was diagnosed with glioblastoma in September 2014 after suffering a seizure. Despite excellent surgical resection, chemotherapy and radiation, Patrick’s case was complex from the start due to a severely debilitating focal seizure condition. Lisa acted as his care partner and used her legal experience to be the most effective advocate she could for his care. Unfortunately, Patrick passed away just ten months after his symptoms first presented on July 11, 2015, only 48 days after their wedding.
Since losing Patrick, Lisa has become a devoted advocate with the National Brain Tumor Society where she initially served on the Bay Area Brain Tumor Walk Planning Committee. Currently, Lisa is a member of the Pacific West Regional Board, the Patient and Caregiver Engagement Advisory Group, and the recently assembled Community Editorial Committee. She is also a planning committee member/co-moderator for the online brain tumor network on Twitter (#BTSM) and blogs about her experience on this website. She became a stakeholder with the Brain Cancer Quality of Life Collaborative where the focus is optimizing palliative care for those with brain cancer. Like Adam, in 2018 Lisa participated in the American Association for Cancer Research's Scientist Survivor Program, a unique program designed to build bridges and unity among the leaders of the scientific and cancer survivor and patient advocacy communities worldwide. Additionally, she served as an eCaregiver to the End Well Project, an annual conference where the goal is to create a cultural shift to normalize conversations about mortality throughout life, and make the end of life a more human-centered experience.
It is Lisa’s hope to use her legal background and passion for the brain tumor community to improve quality of life for both patients and their care partners.