This One Is Rough

"This may be harsh, but living with my diagnosis has taught me that what you have is THIS. Right now. This time IS your time. Don’t wish it away. What you have now might BE the good days. So enjoy what you can of THIS."

                                                                                                -Tori Tomalia

Tori Tomalia was one of the first people I met who, like me, had been diagnosed with ROS1+ lung cancer. Well, to be honest, we never actually "met" in person, but the first time I sat down and Googled "cure for stage IV lung cancer," a link to her blog turned up just a short scroll down a page full of links to prognoses of doom. I read what the medical experts suggested about my disease and tried hard to get my mind around terms like "disease progression" and "morbidity." Things looked pretty grim.

And then there was Tori's blog, A Li'l Lytnin' Strikes Lung Cancer: Living, Loving, and Momming It Up with Stage IV Lung Cancer. It chronicled her life through, at the time, five (yes FIVE!) years of momming it up with a Stage IV diagnosis, but also reached back into earlier years, when her blog had a different name and told the story of her travels, falling in love, marrying, the births of her children, and life with her husband and three kids. 

The blog was funny, forthright, spirited, and hopeful. Her tone was so personable and engaging; it invited you in. Somehow, she could tell a harrowing story about living with cancer in a way that could make a reader laugh, or at least chuckle. Tori, it turns out, was a comedian. For real. AFTER her "terminal" cancer diagnosis, she and her husband, Jason, opened a brewery/comedy club in Ann Arbor, called Pointless Brewery & Theatre, where they made beer and made people laugh. They also ran classes and workshops in comedy and improv performance.

And she lived for eight years with a ROS1 diagnosis, surviving from clinical trial to clinical trial, treatment to treatment, as many of us do. She passed away this week.

In addition to founding a brewery/comedy club with Jason, Tori was a founding member of the patient advocacy group The ROS1ders, which supports patients and caregivers affected by this rare cancer, advocating for research, access to clinical trials, and building a community of patients, caregivers, clinicians, and researchers around the globe. I am grateful for this group every single day.

To live with a metastatic cancer diagnosis and to take up with a community of others who share that diagnosis, even an online community, means, inevitably, despite all the good things that community brings you, you'll be confronted with loss. Like lots of it. People with metastatic cancer live longer than they used to, sometimes, thanks to advances in treatment. And we are ever hopeful that the science will outpace the disease. But still, we run out of time.

I didn't know Tori. Not really. I'd never met her, except in Zoom meetings. But even without meeting her, it was easy to know that she was one of the really really good humans on the planet. She made the world better just by being in it. I miss her already.