Reflections on Living with Glioblastoma
More than four years after a diagnosis of glioblastoma (GBM), Susan Sandler shares her experience of living with the challenges of brain cancer.
She chronicles her personal journey and revelations in her newly published book, a collection of essays titled When I First Found Out I Had Cancer.
In 2016, Sandler was diagnosed with grade IV GBM, after a series of intense headaches and nausea sent her to the emergency room. Doctors at UCSF later confirmed that the tumor was located in her right parietal lobe, an area of the brain involved in processing sensory information.
Mitchel Berger, MD, Director of the UCSF Brain Tumor Center, performed a surgery to safely remove the tumor while sparing critical brain function. Since then, Sandler has undergone a second surgery and has had success with a variety of therapies, despite tumor recurrence.
Here, Sandler describes the motivation for sharing her cancer experience, together with candid reflections on how she has learned to live and thrive with a serious illness.
“I am not sharing my story because I think I have some answer or path that helped me work through how painful this situation is,” she writes in her essays. “I don’t have an answer. But I do hope there is something in my story that some people might find relevant or helpful to their own situations.”
Q: What inspired you to document your story?
A: Having a disease as serious as GBM made me feel like I was going through a profound experience and that I should have something profound to share about life. I kept thinking that I should have these profound thoughts. I would say to myself, “Life is…” but there was never an end to the three dots where the sentence trailed off. What profound statement did I have to say?
I also avoided talking to friends because I was very anxious and fearful about my diagnosis, and didn't want to make them feel the same way. I was protective of them. Over time, I developed a comfort level with my disease.
I wanted to talk to others and help them feel more comfortable, especially if they had cancer. I wanted to let them know the steps I had taken to handle the situation, and what I was doing to help myself. That’s what motivated me to start writing.
Q: How has writing about your personal experience helped you process your illness?
A: I’m someone who really focuses on my emotional journey – what's going on inside. Not many people talk about that. So it's really helpful for me to have an opportunity to write about my interior experience. When I first shared it with my husband, I wasn't sure how he would respond. We are so close, but we just never talked about emotions at that level before.
Q: What do you hope readers will take away from your writing?
A: I feel that there is very little literature about coming to a place of acceptance of a disease with a very short lifespan. I’m still shocked that the literature is so narrow. So I hope that readers can find some kind of peace of mind with their disease from my writing.
I go back and forth on wanting to personally make a contribution in the world. I change my perspective on that about once a year, but when I do want to make a contribution, it is through my writing.
Please join us on November 18, 2020 for a special opportunity to meet Susan Sandler, as she discusses her book and cancer experience. Register for the virtual event here.
The Living Well Webinar event is sponsored by the UCSF Sheri Sobrato Brisson Brain Cancer Survivorship Program.