Craig’s Story

Hi, my name is Craig Frost. I live in the San Francisco Bay Area in Walnut Creek. I am a fifty-seven-year-old father of three wonderful young men, all who are finding their way in this world. Tyler (age 30), is serving in the Navy as a nuclear submariner in Norfolk, VA.  Marcus (age 26), works as a marketing manager, developing project proposals for water engineering projects. Brett (age 25), is a recent graduate from The Art Academy University of San Francisco, with a degree in digital game design. Marcus and Brett live 20 minutes away in the Oakland Hills. 

I was raised in Barrington, RI, and graduated from Gettysburg College with a bachelor’s degree in physics and later received my master’s in engineering in technical leadership from Steven Institute of Technology. I was employed by Verizon Wireless for 23 years, holding positions responsible for the expansion of the network. I enjoy leadership, golf, ice hockey, skiing, biking, hiking, lifting weights, public speaking and memoir writing All of which I have found ways to continue doing since my diagnosis. 

In April of 2018, while working as the Director of Business development at a small wireless services firm, I started having headaches, which I could not treat. I started losing my balance and falling, and my texts, emails, and verbal communications lost their usual clarity. I attributed all of it to a worse than usual allergy season and a self-diagnosed sinus infection that was impacting my ears to cause balance issues. After a slow fall and an intense wave of nauseousness, I went to the ED at a nearby hospital.  After ruling out a stroke, a CT scan revealed a large lesion on my right temporal lobe. Five days later, I had a 5-hour craniotomy to remove a tumor. I learned 3 days later it was Glioblastoma. 

After the initial shock of the news and with a little research, I started making choices. What would my attitude be? I chose to be positive from day 1 and decided to control what I could with my diet, activity, sleep, and stress. For my physical and emotional health, walking became my main form of exercise. While I walk, I call people I’m blessed to have in my life and share with them the latest news. I meditate and pray to stay in the present. I’ve found my true purpose. It is to be of service to people in all of my communities.  

I completed standard of care treatments, including 12 cycles of adjuvant Temodar chemotherapy. Being active, having positive interactions with those around me, and with my faith, helps me handle the realities of my diagnosis, without fear or anxiety. My treatment protocol is Optune therapy. I wear an Optune daily, and for 7 years my MRIs have remained unchanged. I have intermittent left-side coordination issues, along with fatigue, and noticeably declining cognitive and executive function throughout the day. I live my life to the fullest, staying in the present, with anticipation of future marriages, grandchildren (hopefully in that order), and career milestones. 

I am active in the Cancer Support Community of San Francisco Bay Area and in the Brain Tumor support group at UCSF.  I also counsel patients who are considering (or having recently started) Optune treatment, and share how I have adapted, with tips and tricks to stay active. With the National Brain Tumor Society, I fundraise and communicate with my congresspeople and Senators to advocate for appropriations to fund research for all cancer types, including brain tumors.

Those organizations, other patients and their caregivers, my church, and all the people who love and care for me unconditionally, help me keep my eyes focused ahead. Comedy is helpful for me. I tell my friends, family, and colleagues, “Laugh at or laugh with me, just be sure to laugh every day.”

Though I rarely talk about the statistics of Glioblastoma, I know the reality of the numbers. My neuro-oncologist has told me to ignore them as much as I can. I know a cure will be found one day, and I plan to be here for it.