“Well suited for illness.” I was diagnosed with brain cancer while completing the requirements for my Master’s degree in philosophy. In fact, my wife, Whitney, toted books, journals, and notebooks back and forth from our home to the hospital, so I could continue work on end of semester term papers, while undergoing care. Oddly enough, my graduate focus was the philosophy of science, and my trained academic eye shifted from philosophy and science articles to peer reviewed medical literature. I’ve joked that I am “well suited for illness.” I say this with a grin because Whitney is a long-time healthcare worker, my dad is a clergy member, offering spiritual care for his parishioners through illness, my mom is the primary caregiver for her daughter, my sister, who is living with physical and intellectual disabilities, and my formal training in academia not only taught me the format and style to navigate peer reviewed journal articles, but the discipline itself, philosophy, equipped me with the skills to formulate questions about my cancer diagnosis that helped me to feel more active in my care plan, partnering with my medical team and taking ownership for my treatment and recovery.
One of the biggest motivators to take ownership in my care comes in threes, called Isaac, Noah, and Gideon, our three kids! Our youngest was only 8 months old when we received my diagnosis, and helping our kids understand and accept my cancer diagnosis reminds Whitney and me not to get stuck too much in our heads and be mindful of what our young kids, now only 9, 7, and 5 years old, are learning by watching Mom and Dad navigate really tough circumstances.
“If there were something seriously wrong.” At 32 years old, an active husband, dad, and grad student, with no major medical history, my doctors listened to the hooves in the presentation of my case, but inferred horses. It turns out, I was a zebra! Healthy on paper, it would take over a year of specialist visits to rule out common diagnoses and to finally order the scan to reveal my cancer. I was told by one clinician, “If there were something seriously wrong with you, you’d be in much worse shape.” This experience encouraged me to get involved with patient-centered organizations to share my story with others.
Paying it forward. I first learned about the world of nonprofit patient-centered organizations shortly after diagnosis when I discovered several pamphlets in an educational folder that I received from my treating hospital. My journey with volunteer service in the nonprofit sector has evolved from one of beneficiary to now community leader, paying it forward to others! Whitney and I have met with decision makers on Capitol Hill and talked about needed research for several fields of medical research. We were happy to discuss the benefits of NIH and PRCRP funded programs. We feel confident we were heard! Serving as a consumer reviewer for the PRCRP is deeply personal to me because it is a full-circle experience.
Today, I serve as a co-facilitator for a monthly virtual support group. I have served on several research meetings and summits, bringing together patients, clinicians, researchers, regulatory agencies, and industry. Whitney and I organize a local fundraiser, where we’ve raised close to $40,000 to benefit cancer research in just a couple of years.
I have served on the American Association for Cancer Research (AACR) Scientist - Survivor Program, and I am a Stanford University Medicine X ePatient scholar. I am very proud to have been selected as a speaker for the 2019 End Well Symposium, an event bringing together thought leaders to re-imagine the end of life experience to be more human-centered. For consumers, finding opportunities to share our stories to raise awareness for our communities is a shared value, and we are so appreciative of the PRCRP for prioritizing our voices!
The PRCRP has done an incredible job establishing the consumer perspective as a necessary component of sound proposal review. Respect for the consumer is baked into the culture of the PRCRP. I was struck in a recent panel when a panel chair who I had served alongside in a previous year remembered me by my first name and greeted me with enthusiasm! It is so clear that scientific reviewers do not view consumers as “just” patients, but instead, scientific reviewers treat consumers as colleagues on the panel review.
Flexibility, adaptability, and tenacity. For me, living with cancer for more than four years, I thought I was accustomed to staying close to home, protecting my health, limiting social interactions because of the fatigue and complex symptoms from my disease, but even a stay-at-home person like me, shelter in place recommendations and other COVID precautions have caused increased fatigue and distress.
I am so grateful for the rapid adoption of virtual meeting technology that has helped us maintain our social networks. The virtual support group that I facilitate, and the social media chats that I help moderate are both terrific pathways to find meaningful connections from the safety of our homes. I found this year’s teleconference PRCRP panels to really capitalize on our new modes of connection. Frequently touching base with the SRO leading up to the panel helped me to feel connected, and when we all logged on the day of our panel, it felt more like seeing an old friend than meeting a new acquaintance.
The flexibility of the teleconference to seamlessly shift to a wholly virtual format speaks to the adaptability of the program, the skills of the administrators, the dedication of the scientific reviewers, and the tenacity of the consumers.
There is no doubt that COVID19 is responsible for public health crisis, economic downturn, and exaggerated health disparities disproportionately impacting vulnerable and at-risk communities, including our communities of color. These outcomes from the pandemic demand a unified response. Thankfully, we’ve showed time and again the possibility for teamwork with clinicians, researchers, and consumers. We can rise to these challenges, meet the demands in the presence of the pandemic, and gather all stakeholders to advance the needed medical research to innovate new treatments, improve clinical care, and extend the lives of people living with cancer, today, tomorrow, and in the years to come.
Last updated Wednesday, December 2, 2020