Tori Tomalia was 37 and a non-smoker when she was diagnosed with lung cancer in 2013, questioning why the disease was striking her.
As a child, she’d had bone cancer and spent most of a year at the Mayo Clinic in Rochester, Minnesota. When she told her childhood doctor about the lung cancer diagnosis, she said they’d never seen lung cancer in a former bone cancer patient.
“I’m that one in a million,” she says.
Things have changed in the cancer world since her first stint with it: Drugs and treatments that were experimental at the time are now the norm. Chemo is easier to deal with. While her current treatment comes with exhaustion and a bit of brain fog, she spends quality time with her kids and husband — and has even embarked on a new career.
Health Central (HC): How/when were you diagnosed?
Tori: It was the typical story, where I had a nagging cough and didn’t feel well — and didn’t think too much about it. It was January, when everyone was sick. The doctor said, “Oh, it’s probably asthma.” But it kept getting worse until a CT scan showed a huge tumor in my left lung. More testing revealed it had spread through my spine, shoulder blade, hip, and liver.
I was stunned. I thought that the way you get lung cancer was from smoking, so I didn’t understand how it was possible.
HC: How did it change your life?
Tori: It changed it completely. At the time, I was in grad school and working on campus and directing a show; incredibly busy. My kids were 4, 2, and 2. I basically quit a lot of things; I was really sick, so I kind of had to put the brakes on everything.
HC: How did it inspire you to start a new business?
Tori: My husband and I had already talked about opening a theater one day, but we’d always put it off, saying maybe when the kids are older, etc. But it had been percolating in our minds again, and there was this day I felt rotten. I said to my husband, “I don’t even know why I’m putting myself through this. It feels pointless.” He turned to me and said, “Maybe everything we do is pointless — why don’t we open a Pointless brewery and theater and make our pointless dreams come true?”
Plus there were practical factors: I couldn’t work a full-time job, and my good energy, I wanted to spend with my kids. So we thought maybe we could design a life for our family where I could still contribute, but let my health be my priority. We’ve decided to make this life happen.
We opened on Dec. 31, 2015. It’s going so well that we had to get extra space for our improv classes. My husband is a co-artistic director and does a lot of brewing the beer and hosting the shows. I’m the catchall person: I answer a lot of emails, I do stuff behind the scenes like marketing and posters.
HC: How has theater been helpful?
Tori: I went to speak to a group of social workers once, and they commented that opening the theater was probably my own kind of therapy. I think it was, even though it was unconscious. It’s a way to think about the future in a safer way. My future is so uncertain, but I can imagine where Pointless could be in five years. It can exist beyond me. Whereas thinking about my family or kids is heartbreaking.
HC: What have you learned that could help someone else in your position?
Tori: It’s both a good and a bad thing, but you have to stand up for yourself and your care. There was a mix-up early on in the trial I’m in where the doctors misread one of my scans and kicked me out of the trial. I spoke up, and they figured it out. In the beginning I wouldn’t have done that. But it’s been five years; I feel like I’ve earned a degree in patient advocacy.
I also found out I had the ROS1 mutation. That was a huge lesson in being my own advocate. I started diving in to what I could learn about lung cancer and reading about mutations. I wanted doctors to test me for every single thing that exists, but I only had a little biopsy tissue left. I told my doctors that I had a hunch that I have ROS1, and I asked them to test me just for that — and it turned out I was right. There’s hopeful treatment for it, so that opened a whole new path for me.
There’s a phrase I learned from a man I knew with stage 4 cancer: “stage 4 is no time to be timid.”