Cancer can't stop Ann Arbor couple's dream of improv theater

Jason and Tori Tomalia of Ann Arbor have stopped dreaming about someday.

Since they met a decade ago, the couple imagined opening an improvisational theater together someday — after they had established careers, and after the children they wanted to have were all grown up.

Someday came when cancer happened.

Tori was 37 in early 2013; Jason was 36 when they realized their time together might be too short to wait for all that and started making their improv theater dreams come true.

The couple had just written a play together. Both were working on graduate degrees in theater at Eastern Michigan University. She was a busy teaching assistant in the arts management program at EMU; she was directing a show, and finishing her master's degree. But by spring, Tori seemed to be unable to get over a cold. She was exhausted, and growing weak.

"It was getting worse and worse," said Tori, as she snuggled one of her 2-year-old twin daughters on a sofa in their Ann Arbor home. "Doctors thought it must be asthma. So I had a whole shelf full of asthma drugs they tried, and nothing was working. Finally, they said, it's something else.

"They took a CT scan, and the tumor was enormous. It had actually partially collapsed my left lung. It had sort of taken over my whole left lung. It was just terrifying."

Though she was a nonsmoker, Tori had stage IV lung cancer. It had spread to her bones, her liver. She was dying.

"With the initial diagnosis, we knew it was not good. It was like, all right, we have maybe eight months," Jason said.

At the time, Jason was finishing up school, caring for twins Autumn and Mikaela and their 4-year-old brother, Zander, and trying to keep it together as his wife grew sicker.

He tried to do it all, to be the rock, refusing even a friend's help to mow the lawn.

"I said no because it created a level of normalcy for me," he said. "It was a place where I could go and breathe and meditate and just focus on the lines, mowing in straight lines back and forth."

Tori started chemotherapy right away, and the couple began to consider what to do with the precious time they had left.

Despite the shock, and days when Tori could hardly get out of bed, the couple started plan for their someday — envisioning a theater in their east Ann Arbor neighborhood that would incorporate Jason's passion for brewing craft beer.

Vision to become reality

Now nearly two years after that initial diagnosis, the couple has rented a former sushi restaurant at 3014 Packard and are now in the process of renovating it while trying to make ends meet, continuing to care for their children and keep Tori healthy.

As they stand together inside the space, they summon their vision to life. The stage will be over here. Seating, there. The brew equipment in the back. They hope to be able to seat 60-70 people.

"It's going to be very intimate," Jason said, adding that the plan is to open by late summer, though permits and brewing licenses may hold them up longer.

They laugh as they talk about how they came up with the name for their dream.

"I'd been having a pretty horrible day ... and I said, 'Why am I doing all this? What if I go through this treatment and it still just ends badly? It just feels pointless, everything feels pointless,' " Tori explained in a video for their Kickstarter campaign, which exceeded its $50,000 goal in April.

"And he said to me, 'Well, OK, so maybe everything is pointless. Maybe everything we do in the world is pointless. So, then let's do this. Let's open our Pointless Brewery & Theatre and make our pointless dreams come true.' And he actually got me laughing."

Hope with a new drug

Although Tori struggled with nausea and fatigue through her cancer treatments, and knew the outlook was grim, she began to feel better with chemotherapy.

"I was focused on getting through it and getting the cancer in control," she said. "I had a finish line in my sights."

"The chemo worked really well," she said. "It started taking care of the cancer, and I could breathe again. Even before we saw the test results, we sort of knew. I was walking around again and could carry my daughters. And it was like, something is different."

Lung cancer tends to be especially deadly when discovered in the later stages. For those with lung cancer that has spread to other organs, as Tori's had, the survival rate five years after diagnosis is just 4%, according to the American Lung Association.

The chemo had been effective, but Tori didn't want to rely on that alone. She scoured the Web for any tidbit of information she could find about the latest lung cancer research and treatments. She'd read about a new drug that treats a particular type of genetic mutation called ROS1 that's found in some lung cancer patients, giving them a better chance at living longer.

Tori asked her oncologist to test her, knowing there's a drug called Xalkori that has been shown to be effective in treating some patients with the mutation. She tested positive for the mutation and now takes a pill twice a day to keep her cancer at bay.

The Food and Drug Administration has yet to approve Xalkori for her specific mutation, but Tori said, "It's approved for another mutation. ... It's our cousin mutation, so a lot of the drugs that work for this bigger one also work for my tiny little subset.

"It's gotten an FDA breakthrough designation, which means they're fast-tracking it. But this stuff is changing so fast, all the policies are trying to catch up now.

"I've been on it for a year and a half now, and it's been great. On PET scans, they can't see any active cancer anymore. ... They know that almost always at some point it stops working. But they don't know when that's going to be. So it's this bizarre feeling, like OK, I'm in good health now, but one day that could all change again," Tori said.

She tries not to worry about that.

"I don't think very far into the future," Tori said. "When I focus on what's happening now, mentally, I can cope with it a lot better. But if I try to imagine what the family will look like in 10 years, I just don't know, and that's devastating."

'It's all moving forward'

Tori is tested every three or four months for cancer. She is tired more now, and among the side effects of her medication are stomach upset and pain. But still, she is hopeful.

"There's no active cancer anywhere in my body right now," said Tori, who blogs about living with lung cancer and also is a contributor to CURE Magazine. "You can still see the residue of where stuff was, but whether that's scar tissue, they don't know. They figure once it's spread, it's there somewhere.

"The hardest thing I deal with is feeling guilty for what I'm putting the family through, you know? I feel like we signed on together, to raise our kids together, to live our lives together, and then to feel like I've messed up all of that..."

She's no longer teaching, and has cut way back on work to focus on her health, and getting their new business going. Medicaid covers her treatments.

"We're kind of living off savings, and that kind of stuff," she said. "I do a little bit of writing, so we get a little help there."

They're putting everything they've got into the theater and brewery.

"It's all moving forward; there are just a lot of hurdles to jump over," Jason said. "Struggles are part of life. The tough stuff is so much easier to deal with when you're doing something you're passionate about than it is when you're not. When you're not really passionate about what you're doing, it can make the tough stuff that much harder. So you can get frustrated for a minute, and then take a deep breath and say, 'All right, let's hammer this out. Let's figure out what we need to do.' "

Making something positive

When Pointless Brewery & Theatre opens, Tori said, show tickets will be available at the door, and those who come should find it a "cozy, inviting, and creative space with a nice community feel. We want people to feel really welcome, like it's their place, too."

They'll use the Kickstarter money to buy some of the expensive brew kettles, fermenters and other equipment.

"In the kitchen, we're basically taking out the cooking stuff and putting in the brewing stuff. So it's more like tweaking than it is rebuilding," Tori said.

They'll have six taps and rotate beers, offering seasonal varieties and fan favorites.

"We'll have our go-to beers that will stay in the rotation, that will always be around," Jason said. "What we're offering will always be different. I really want to be constantly brewing."

They hope to start auditions soon for the theater's home team of actors.

"Friday and Saturday nights will be the invited, established improv groups." Jason said. "So we'll invite to groups and have our own Pointless performers, our Pointless improvisers, our home team, and we'll do a performance, too."

There will be a family series of shows on Saturdays for children and young audiences called Little Peeps, Tori said, along with workshops and educational classes.

"There's no improv stage in Ann Arbor, which is just crazy," Jason said. "We had gotten some pretty nasty news and it was like, let's see if we can make something positive out of this."

Everything else, they say, is pointless.

Contact Kristen Jordan Shamus: 313-222-5997 or kshamus@freepress.com. Follow her on Twitter @kristenshamus.

Audition information

Although plans aren't yet firm for when the Pointless Brewery & Theatre will open, Tori and Jason Tomalia are beginning to consider auditions for performers. To learn more, send an e-mail to tori@pointlessbrew.com.

To learn more about the Pointless Brewery & Theatre, go to www.pointlessbrew.com.

Facts about lung cancer

■ Lung cancer is the leading cancer killer in the U.S. — 158,040 Americans are expected to die of it this year alone.It takes more lives than colorectal, breast and prostate cancers combined.

■ The five-year survival rate for lung cancer is 54% among people who've been diagnosed early — before the cancer has spread. Yet most lung cancer cases (85%) are diagnosed after the cancer has metastasized. For people with tumors that have spread to other organs, the five-year survival rate is 4%.

■ More than half of people diagnosed with lung cancer die within one year.

■ Although smoking is the primary cause of lung cancer, exposure to secondhand smoke, radon, asbestos and pollution also are causes.

To learn more about lung cancer, go to the American Lung Association's website, www.lung.org.

Source: The American Lung Association