‘There’s no back to normal’: For people with terminal illnesses, time lost to Covid-19 can’t be made up

After Aaron Hoover found out he had glioblastoma in 2019, a new imperative imbued each day. There were trips to take, family to embrace, friends to spend time with.

What he didn’t envision, however, was a bucket-list-shredding pandemic.

“When you get that diagnosis, you just get the feeling of wanting to do as much as you can,” said Hoover, 42, who lives in Boston. “It injects this urgency into your life. And then the pandemic came along, and it’s like throwing a wet blanket on this smoldering fire. You have this intensity, but everything is shut down around you, so you can’t act on it.”

It’s become standard for some to cast 2020 as a throw-away year, something the door should hit on its way out. Plans were disrupted, celebrations postponed, everything — dating, vacations, just a dinner out — hit by flying wrenches. Some things, of course, aren’t recoverable. But many people have embraced trudging through until they can pick up where life left off, when a semblance of their former normal is restored.

But losing a year is not the same for everyone. For people with life-limiting illnesses, time is less of a nebulous concept than a pressing constraint; there are fewer chances for do-overs. When you’re told that you have a cap on your life, patients say, a switch flips that you need to make the most of the time you have left.

A pandemic doesn’t allow you to pack in the experiences like you had planned.

“There’s no back to normal for me,” Hoover said. “That notion of back to normal is just not even on the table for me.”

For Hoover, 2020 has been a bizarre convergence of a global health crisis and his very personal one. In April, just as the coronavirus was surging in Boston, he found out his brain tumor was growing again — almost exactly a year after it was first identified. It was also his son’s seventh birthday.

“That night, some friends of ours wanted to have a video call with him to sing ‘Happy Birthday,’ and I had to wait for all this stuff — the social stuff and the fun stuff I wanted to do for him — but I hadn’t even been able to tell my wife yet about the recurrence,” said Hoover, an associate professor at Olin College of Engineering. “It was just such a surreal experience being on this video call with his friends singing ‘Happy Birthday’ to him and I knew my cancer was back.”

It’s not just the dream vacations and extended family reunions that people with these conditions miss more profoundly this year. They’re feeling the loss of the small things too, like a night out with friends that isn’t just a source of support, but a fun distraction from what they’re dealing with.

“I want to go to a salad bar and scoop my own food and I can’t do that,” said Dan Keuning, 50, a former nurse practitioner and coroner who has a form of frontotemporal degeneration that’s causing worsening confusion, impulsivity, and forgetfulness. “I want to go to breakfast with the docs I used to work with and relive the old times, and I can’t do that.”

“I’m constantly like, ‘I want to live life now, in case I can’t do it tomorrow,’ and Covid’s not letting me do that,” said Keuning, of Pagosa Springs, Colo.

Keuning used to work in palliative care, and said when he was diagnosed with behavioral variant FTD in 2018 and told he had five to seven years left to live, “It was like shit, I’m a palliative care patient all of a sudden.” Since then, the father of three has done what he called “a lot of bucketlisting” — spending time with family, journaling, and going on cruises.

That’s changed. He and his family’s plan to go on a cruise next month is out the window. He was supposed to travel to the National Institutes of Health back in April to potentially participate in a study about the root causes of his condition, but the trip was called off, he said. With his medical background, he understands why public health measures are so crucial — why these limits on activities exist — but part of him “wants to go out and go hug and get together and get on the next cruise that opens up.”

But he feels lucky in other ways. He has a cousin with dementia in a long-term care facility who hasn’t been able to hug her loved ones since March, Keuning said.

“I’m so fortunate I’m at this stage right now,” he said, when he can still live at home with his family.

In Tallassee, Ala., Jennifer Lee, who has another form of FTD called primary progressive aphasia, also found herself appreciating the extra time she’s had this year with her family — what she called a “Brady Bunch” of six children between her and her husband.

“We planted a garden and we worked on our flower beds,” said Lee, 43, whose short-term memory and ability to communicate are fading. “We baked my grandma’s old recipes from scratch,” cooking up treats like pound cake, “which doesn’t sound very hard but when you’re using old recipes it’s much harder.”

“We really did have a great summer, which was so important.”

But the pandemic has intruded on her plans in other ways. She had to call off a long-dreamed-of vacation to the redwoods in Northern California because of Covid-19, after already postponing the trip once a few years ago because she had just been diagnosed.

Lee, who starts each day by writing down three things she’s thankful for and three things she wants to accomplish, had to give up her career as a high school English teacher because of her condition. She says she feels like her forehead’s been stamped with a due date, just like the books in the school’s library, though she can’t know what that date is.

“The whole thing with FTD is that you don’t know when you’re going to lose what, I don’t want to say skill set, but it affects your executive function first and foremost,” she said. “You don’t know when you’re going to lose what faculty.”

Lee is still planning to make it to the redwoods, and hopes to go when she still has as much wherewithal left as possible — really, when she’s still herself. She’s wanted to see the trees since she was a girl, to look at them and think about all the other people who have been in that same spot looking at those same trees.

“It’s just getting to see something that’s so pretty in nature and that are so big and have been there for so long,” she said. “It just puts into perspective the beauty of something that grows that large and stays that long.”

Despite additional treatments following his glioblastoma recurrence, Hoover’s cancer has kept progressing. He wants to get as much time as possible with extended family, but his mom and sister canceled their Thanksgiving trip to Boston because of spiking Covid-19 infections. With the pandemic, it’s been harder for him to feel connected to friends and to have what he called “those little social moments” that offer a reprieve.

But after the recurrence, he and his wife opted to go on the trip they had on the books for their tenth anniversary. They weren’t sure they could wait. They flew to Kansas City, where Hoover is originally from, and then took the train to Santa Fe.

“We just decided to go for it,” he said. “We had something we had planned that was going to feel good to do, so we did it.”