Praying for more time
Last month we introduced Frank Liva, 62, of Portsmouth, N.H. Frank is living with glioblastoma, the brain cancer that killed John McCain, Ted Kennedy, the president’s son, Beau Biden, along with approximately 10,000 people in the U.S. every year. Frank fervently hopes that he has the option for medical aid in dying when the tumor becomes unbearable. He’s afraid that option will not come soon enough for him, but is committed to making that happen for others. He hopes sharing his story will make a difference. You can read the first installment contrasting Frank’s outlook with that of a Vermont man who also had brain cancer.
Frank’s story is about living. It’s about the changing and sharpening of perspective, priorities, estimation of what is most valuable, with the acute sense that any given activity or experience may be the last one.
Frank Liva, his son Connor, and wife, Bonnie
“It’s a relief to know things are still good,” Frank said after his most recent MRI to check on the tumor. “But it's sort of a paradox. I should feel more confident every time - I mean I don't feel any different than the last MRI, my symptoms are the same, the side effects the same, yet you feel more anxious. I think part of it is you've done this for long enough that the longer you go the better you feel about your longevity, but the more you go the more the mathematical odds are that you're going to get bad news.”
Frank enrolled in a new clinical trial at Dana Farber in Boston after surgery, radiation and chemotherapy failed to stop his tumor from growing back about six months after the initial his diagnosis in October 2018. Ninety people participated the trial. Only six remain alive. Glioblastoma is notoriously difficult to treat; the average length of survival is estimated to be only 12 to 18 months. The five-year survival rate is less than seven percent. In Frank’s trial, the new drug did no better, and so the trial was not moved forward. Although overall the trial was a failure it has worked so far for Frank. He goes to Dana Farber every two weeks for an immunotherapy infusion. Frank watches the research for new trials he could join if/when his current therapy fails.
“I’ve learned that every tomorrow is a gift and you don’t want to waste a minute of it.”
While Frank’s life is punctuated every eight weeks with a trip to Dana Farber for an MRI, he resists defining himself by his cancer. “The pattern of my life has changed,” he says. “It’s hard for me to think far ahead. Far ahead for me is thinking about sailing and what else we’ll do in the summer. I live life in eight week blocks. That’s pretty much how it goes. This is the new normal for me.”
Each time he prepares to enter the MRI machine, he prays for more time. “The one thing we both wished for when we got this diagnosis was more time,” Frank says, referring to Bonnie, his wife of nearly 30 years. “We've been granted that wish. We’re both very grateful.”
Part of the new normal, Frank says, is his awareness of the value of time. He retired from computer engineering six months before the cancer diagnosis, but went back to work part-time with a colleague who was running a maple syrup business. It gives him structure, a brand-new learning opportunity, and engagement with others. It’s fun. He can just be himself, helping solve problems. It’s an example of what he is choosing to do. Just as important, he feels empowered to choose what to decline.
“One thing about having a terminal disease is it basically gives you a get out of jail free card for things you don't want to do,” he says. “I have not hesitated to use that so I focus my time on the things that are important to me, which are the things I like to do with Bonnie and Connor (their son) and spending time with the people I love the most.”
Frank has also experienced a shift in how he approaches time. “I was always someone who focused more on the horizon, what was the next thing,” he says. “Even when I was supposedly relaxing, like sitting on the beach looking at the sunset or moonrise or whatever, everything was ‘well what are we going do when we get back, what’s next?’ I don't do that nearly as much anymore, I’m much better at being present in the moment. I've actually learned to appreciate things much more.
“There's an underlying assumption for me for all of these things that it might be the last one - like the last really big sunrise I see or the last really great moonrise I see,” he continues. “It’s especially around holidays, things like I have a birthday coming up and am I going to have another birthday? It provides me with a sense I need to be able to appreciate more of what’s right in front of me.”
I asked Frank what he’d say to people who aren’t (yet) facing a terminal disease. “People always think they’ll have more time,” he said. “Time to spend with their family and friends and do the things that are meaningful to them. Until, like me, they find out they don’t. I’ve learned that every tomorrow is a gift and you don’t want to waste a minute of it.”