When Steve Julian of KPCC in Los Angeles was diagnosed with a terminal brain cancer, his wife Felicia Friesema turned to social media for solace, support, and the space to process this heart-breaking journey. (Rachael Myrow/KQED)
UPDATE: Steve Julian died on April 24, 2016. KPCC published a lovely tribute here. His wife, Felicia Friesema, wrote on the blog she's been maintaining during his last months, "He left this world surrounded by love, in the comfort of the home we made together, in his own bed." Our hearts go out to Felicia in this time of grief. We trust this story provided some measure of comfort for her when it first went up on April 1, 2016. We hope that others who encounter this story now, after Steve's death, share our profound love and compassion for those who suffer from devastating diseases, as well as those who care for them, all the way through to the end.
"My experience on social media is that it has always been a connecting fiber. I think that, like anything, you get out of it what you put into it." -- Felicia Friesema
Felicia had seen the signs of brain cancer before. Her husband Steve Julian wasn't just forgetting his keys on the kitchen counter or having another of the myriad brain farts we often associate with middle age. He'd stop in the middle of a sentence, like he'd just hit a brick wall, and that was that.
"It wasn’t that kind of gradual onset that Alzheimer’s is. It didn’t sound or feel like dementia. This was so sudden -- and it was very eerily similar to what happened to my aunt, my tia Gloria," Felicia says.
This time, it was her husband.
Over the years, they've built a cozy life together in a sweet, spacious home overlooking the 110 freeway in Highland Park. She's head of marketing for Foothill Transit. Steve Julian is one of a handful of trusted voices helping Angelenos navigate the freeways every day, as morning anchor for KPCC-FM. In his off hours, he writes plays.
Now, he was having trouble navigating his way through a sentence.
"Technically, all tumors are operable," Felicia explains. "The question that comes into play is: What are you willing to sacrifice in order to get it out? The position and location of his tumor is such that you would have to completely destroy a lot of healthy brain tissue in order to remove it. You would be creating a situation of paralysis, major cognitive dysfunction, irreversible brain damage, and ultimately for possibly very little reward. There’s no way of skirting around it: I was looking at his death."
Around Thanksgiving last year, Steve was diagnosed with terminal brain cancer at the age of 57. They decided not to try to stretch his last months with chemo and radiation therapy. Steve has less time than he might have, but he can eat what he wants, sleep with their dogs, and squeeze the last juice out of the days that remain with Felicia.
She's taking time off from work, thanks to a compassionate boss. In the 20 or more hours a day that Steve now sleeps, Felicia takes care of everything else: the meals, the housekeeping, the medicine, insurance and the emotional management.
Of course, friends and family are helping. Larry Mantle, Steve's dearest pal, comes over for company and a wee dram of whiskey. Friends have delivered dozens of lasagnas to the doorstep and whipped out their credit cards to cover what insurance doesn't. But at the end of the day, Felicia is alone. And every morning, there's a little bit less of Steve.
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Reaching Out Online
It was a few months in when I noticed Felicia's journal on Caring Bridge. She had me at "hello." The same was true for my "Love in the Digital Age" co-producer Polly Stryker.
We recognized a kindred spirit: someone else in the special club of those who have lost or who are losing a close loved one. We had to fly down to Los Angeles and meet this woman who wrote so deeply, thoughtfully, and with such compassion, about a journey no one chooses.
I know that this is treacherous ground we walk on and that time is of the essence. We wake up to the juxtaposition of joy in another day together and terror at what may come.
There is no detailed prognosis yet. But we do know that there is no outcome we like. And I have never been so scared. But I have also never been so completely full of love for him.
That was Dec. 2, 2015. At that point, Steve could still help Felicia craft a communique to friends.
I miss being at work and in the studio. I miss being with all the people I love at KPCC. I’m still good at traffic. We chose UCLA for the surgery and treatment and navigating to the westside can be tricky. The tumor can take away what I had for dinner, but not my memory of the traffic jams I've sat in.
I am sad. I feel the unfairness of all of this. But I also feel the love for my wife, which grows every day as she balances the technical work of our affairs with the emotional work of our daily life. Like making sure I eat three solid meals. And I mean really solid. Four, sometimes. She tells me I'm loved about a hundred times a day -- I remember a few of them. Larry [Mantle, host of Air Talk], my brother in all but blood, is a rock for both of us and has been by our side from diagnosis until now.
Many people facing down the gun barrel of something this awful retreat into family. But Felicia reached out from the beginning to friends online.
"We kind of had to," she explains. "We’ve kind of got a unique and peculiar situation. I mean, Steve’s a very popular radio host in a very large market. He’s also incredibly involved in the theater community here. He also used to be a cop. So, you have these seemingly disparate communities that he’s connected to. That’s thousands of people: his most intimate friends all the way down to the casual listener."
From the peace and quiet of their home on the hill, when Steve is sleeping, Felicia can write about all the medical details it would be exhausting to repeat to people in one individual conversation after another.
Felicia is also using the blog to process what's happening in her world, "to take this jumbled puzzle piece of post-it notes and ideas and thoughts and put them together into something that is like 'Oh! Okay.' Usually, I don’t know when I’m going to conclude until I start writing, and by the end of it, I’m like, 'Oh, that’s my “aha” moment. Okay. Alright.'"
On Facebook, for a smaller, closer audience, Felicia shares bite-sized missives from her daily journey: proof the bees in the backyard are making "So. Much. Honey."; the desperate wish MRI machines played Brian Eno instead of frightening clicks and buzzing; rage against the insurance company; pride in yet another crazy beautiful meal made for Steve.
And then there are the jokes. If anything, staring down death has heightened their sense of humor.
Fun with brain cancer:
Me: Yeah babe (knowing full well he was calling for me)
Steve: Oh I'm sorry. I just called you Jen.
Me: Yeah I know babe. It's ok. What's up?
Steve: (tells me some stuff he needs)
Me: No problem. By the way, (smiling) I'd like to know who the hell Jen is.
Steve: (chuckles) So would I!
The love has come pouring in from a wide variety of corners. By Jan. 4, Felicia reported that more than 100 people had made deliveries, run errands or have completed tasks around the house.
People, Felicia says, "are grateful for being included, or grateful just to know that Steve’s okay for now. Or they’re grateful for an opportunity to help. I’d been crying so hard just a few days ago. I just couldn’t stop. I was so sad and so dejected. And at the end of the day, my status update on Facebook was, 'There just aren’t enough tissues in the box.' So, the next day, what arrives on my doorstep, but a case of Kleenex? And the message was, 'We know that this isn’t enough, but hopefully it helps.'"
"One of the things we’ve been focusing on," Felicia says, "is making sure that every day is about some kind of pleasure; some kind of happy moment, some laugh, something in there that actually makes the day not a routine of care-giving."
Felicia sighs. "You know, something that reminds us that there are all these wonderful pieces to life and that living it doesn’t stop with a cancer diagnosis."
What remains online from this journey is a whole lot more than the testament to the love people have for Steve and Felicia. It's a social network, in the best sense, that will be there for Felicia, waiting to engage and respond any time she wants.
This podcast features music by Glenn Gould (Toccata in D Major), Windy & Carl (Balance (Trembling)), Labradford (Wien), Aix Em Klemm (3x2 (Exit)) and Yo La Tengo (Green Arrow). Special thanks to the California Report's LA Bureau Chief Steven Cuevas for his production support.