If this is my last summer . . .

Frank Liva is defying the odds. He’s lived 45 months with glioblastoma, the deadly brain cancer.  The average is 14 months.

Frank, 63, lives in Portsmouth, on the backchannel of the Piscataqua River. When he retired four years ago, he looked forward to living in the waterfront house he and his wife, Bonnie, had just finished rebuilding, plus lots of sailing and travel. In short, a huge and welcome change of pace from his long tech career in Boston and California.

That dream came to a screeching halt in October 2018 when Frank was hospitalized with a brain tumor that was diagnosed as glioblastoma, one of the most aggressive and deadly forms of cancer.

The change of pace Frank is experiencing is not what he envisioned.

Now, he describes living in eight-week chunks, which is the time between radiology appointments. Each time the question is, has the tumor changed? Earlier this spring, a new tumor was identified and started to grow after nearly three years of stability. A clinical trial he was in ended for lack of participants – out of the 90 or so patients who started, only Frank and several others remained. Many of the others have died.

For Frank, one of the hardest parts of living with a terminal disease is the uncertainty.

“I’m used to solving problems, making plans and making things happen” he explains. “I know how to deal with bad news. With product development at work it would happen all the time. But the uncertainty is really hard.”

There are some things of which he is certain. If this is his last summer, or at last healthy summer, he wants to live it fully and not compromised by the effects of treatment options. Happily, he’s working with a Boston oncologist who’s determined a radiation/chemo regimen that’s not as debilitating as some other proposed treatments. This week, Frank hopes to get his boat in the water and go sailing.

Frank is also certain of the value of medical-aid-in-dying (MAID). He knows how glioblastoma ends. He wants to avoid the physical and psychological suffering for him and his family.

“We should be able to make a  choice for a peaceful death, with our loved ones close by, and spare them the prolonged pain of watching the pain and suffering that can accompany a prolonged and unaided death.”

He tells the story of a terminally ill friend in Maine, where MAID is legal. His friend celebrated her 70th birthday with family, friends, and her dogs at a carefree, joyous outdoor party. Her physicians had given her a six-month prognosis, qualifying her for hospice and for medical-aid-in-dying, which she wanted. 

“I'm sure she knew at that point she was going to take the medicine within a week or so,” Frank says. “I talked to her [at the party] and I talked to her partner after she died. It was very peaceful. She was surrounded by the people that really mattered.”

To Frank, his friend’s ability to exercise some control over her death is critical. “The other side of uncertainty is the ability to control things,” he reflects. “The more control you have, the less uncertainty. You should be able to have some control over how you pass.”

MAID is not yet legal in New Hampshire. So Frank is exercising control where he can, especially by preparing himself, his wife, and son for his death. He wants to leave some life lessons for his 26-year-old son, Connor (“He’s still at an age where I think I have something to teach him,” Frank muses). For Bonnie, he’s leaving practical instructions, like how to winterize the snowblower and prepare the garden. He also wants to leave her the clear message that she should go on with her life, hopefully finding happiness in another relationship.  

He decided against writing letters: “They’d be too tear stained.” So, he’s scripting videos. Part of the reason, too, is that he looks hearty. That’s how he’d like to be remembered, not as debilitated, drugged, and in pain, which is how he recalls the last days of his own parents.

And that brings up another important reason for having the option of medical-aid-in-dying. As Frank says, not only is it more humane for terminally ill people, it’s comforting for their loved ones. It can lessen loved ones’ anguish by knowing that instead of being forced to suffer more and more, their family member or friend can decide when their life is complete. “They can focus on the needs of their loved one without the anger and frustration that comes from watching unnecessary suffering,” Frank says.

It’s for people like Frank that the Alliance is now preparing legislation legalizing medical-aid-in-dying in New Hampshire.

“We should be able to make a  choice for a peaceful death, with our loved ones close by. We can spare them the pain of watching the suffering that can accompany a prolonged and unaided death,” he said.

We all have loved ones who will die. And each of us will die. It’s up to us to make our end of life sane and humane, in ways of our choosing.