It started while I was on a Hawaiian vacation in May. I thought I’d just tweaked my back lifting a poolside lounge chair. Back home, my back pain became severe, and I started noticing nerve pain in my legs. For eight days I could barely crawl around the house. My wife and two daughters nicknamed me “the worm.” At 45, I’m in pretty good shape—avid cyclist, runner, weightlifter, yoga enthusiast with a resting pulse in the 50s.
So it was weird when my primary care doctor put me on a cocktail of pain killers, nerve blockers, and cortisone shots. I even tried acupuncture. But as my back began to improve in late June, I started to feel off. Sick to my stomach. Weak. Couldn’t sleep. I lost more than 10 pounds. But I chalked this up to a month of too much Vicodin after a lifetime of thinking two Advil was excessive. My doctor said I was fit and healthy and that there was no need to run any blood tests. He wondered aloud if this was all in my head.
It wasn’t like work was driving me crazy. Just the opposite. As the CEO of the startup Mighty AI in Seattle, I was on a roll and having a blast. Our company, which produces data to train artificial intelligence for self-driving cars and other applications, was racking up new customers, building new capabilities, shipping better software, and beating the competition. We were getting buzz. WIRED and The Financial Times wrote about us. There was a feeling that our growing team could do anything we needed to. Morale was high, and our company was still small enough—45 people or so—that I could chat with anybody at work about real things in life besides work.
Unfortunately, my nonwork life was getting all too real. Usually I’m pretty good at unplugging from stress. When I’m feeling down or the shit is hitting the fan at the office, I unwind by hanging with my wife, Amy, and our daughters, Anna, 14, and Elsie, 11. I’ll play some music or go for a bike ride.
But that stopped working this summer. At the office I felt guilty for not putting in 100 percent effort. At home—well, I was a worm! After nearly a month of feeling horrible despite my back getting better and being off all medications, I hit a wall. On July 26, a Wednesday, I finished my day’s meetings and drove myself to the least busy ER I know of—the one at Swedish Medical Center in the Issaquah Highlands, 20 miles east of downtown.
A couple hours later I called Amy and asked her to join me. They’d already done a bunch of tests and ruled out the obvious—urinary tract infection, epidural abscess—and were sort of grasping at straws. Over the phone, I asked Amy, who is a clinical psychologist, if she could think of anything else I should tell the doctors. “Have you told them about the night sweats?” she asked, her stomach sinking. The look on the ER doc’s face when I passed that on should have been my first clue. (Night sweats are a symptom of some early cancers.) They drew more blood and did a CT scan.
About an hour later, a doctor who specializes in hospital admissions joined the ER doc to report on their findings. The ensuing scene is seared into my brain. He introduced himself to Amy and me so awkwardly that we could not understand him. I gently interrupted his prepared remarks to ask his name, hoping this might put him at ease.
It didn’t. He went on to explain that I had many tumors in my liver, pancreas, and chest. In addition, he explained that I had quite a few blood clots, including in my heart and lungs. “What is ‘many’ tumors?” I asked. He looked defeated, saying they stopped counting after 10. I thought he might cry, and then he started in with some nonsense about how maybe it was all just bad tests, or maybe I had a rare water-borne pest infection. Amy began crying, hard. I went into silent shock and just tried to get this guy to shut up and leave.
The next few hours were a blur of tests and procedures. They finally stopped poking and prodding me at around 2 am. It’s kind of impossible to explain how I felt, let alone try to share how Amy felt. Neither of us slept that night. With outsiders gone, I was finally able to cry. I knew I couldn’t fully understand it all. But the thought of breaking the news to Anna and Elsie made it all too real. Anna is tough—stoic, introverted, methodical, deep-keeled. But still, she’s 14. Elsie is our little angel from heaven. She’s bubbly, extroverted, universally adored, extremely empathetic, and sensitive. I just couldn’t imagine her taking the news, let alone growing up without her daddy.
My head was spinning. Thinking of Amy brought fresh tears to my eyes because she and I have worked so hard to raise a family while pursuing two ambitious careers. We had promised each other that in a few years, when the girls headed off to college, we’d work less and travel more. Amy didn’t deserve to lose those dreams, or her companion, just as we were on the brink. Then I thought of my mom and dad. My mom would break. She lost her youngest son, Joshuah Paul, to a heroin overdose eight years ago. I cried and cried, and so did Amy.
Thursday we were right back at it. They had quite a lot to do—classify the cancer, measure its progress, plan treatment. They took a biopsy of one of the tumors on my liver. They surgically implanted a stent in my gall bladder, which immediately relieved my backed-up liver. The medical staff also looked for secondary impacts of the cancer. First among them was blood clots. A couple doctors examined my legs and said, “Slim to zero chance you have clots in your legs—they look too healthy. But let’s check.” A few hours later, bad news: My left leg had clots from my hip to my ankle, though thankfully not fully occlusive. My right leg had clots from knee to ankle.
We spent much of Thursday waiting for the pathology report, playing a weird mental game trying to convince ourselves it was anything but pancreatic cancer. We’re not dumb—we could see how the MDs looked away when listing alternatives and could hear how they demurred when discussing possibilities. Maybe it was lymphoma—there were swollen lymph nodes. Maybe it was colon cancer—that’s treatable, right? But little did we know that the official diagnosis would be the least of our concerns that day.
When the clock struck 10 pm Thursday night, I passed out. I’d spoken with some of my best friends during the day, but it was a bit awkward. What was I supposed to tell them? “Hey, I’m in the hospital. I have cancer. Not sure what kind. Oh, and a bunch of clots. But at least I can pee!” I’d avoided calling my mom back. She’d phoned and texted about 1,000 times. I was definitely not ready to speak with her. I needed a full plan.
On Friday the docs woke me with an urgent problem: They had found a blood clot the size of a Ping-Pong ball in my heart’s right ventricle. If it broke loose, I would die instantly, whether I was in an ER or my basement. To make matters worse, they showed me an image of the clot, and it was precariously wiggling on an already-loose attachment. Each time my heart beat, the ticking time bomb swayed precariously. The clot was too big to suck out with a vacuum, too risky to slice and remove bit-by-bit, and too large to remove from the side by breaking open a few ribs. Nope, removing it was urgent and would require cracking my sternum. Today.
Events were happening at a dizzying pace. Clearly I needed to start making some calls—to resign my role as Mighty AI CEO, to connect with my mom and other immediate family members, to alert more of my closest friends. It was around 9:10 Friday morning. Mighty AI’s weekly operations meeting would be getting started at 10:15, so I had a lot of calls to make.
I phoned our board members one at a time, sharing the news with those I reached. Each of them was supportive and encouraged me to take a leave of absence to focus on getting healthy. I asked for and got full support to name our founder and CTO, Daryn Nakhuda, as Interim CEO. That took about 11 minutes. At 9:21 I called Daryn to share the news and ask if he were willing to serve as interim CEO. He was perfectly poised, supportive, and ready to step up. I scheduled a 9:35 all-hands video meeting.
Why an all hands? Well, this was obviously big news, and I wanted everyone to hear it all at once. I wanted to share it raw and to project confidence, sorrow, and love. Why video? Well, I admit I regretted that choice a smidge when I saw myself in a thumbnail on my laptop screen with a hospital gown, an open wound at my neck where they’d fished in the stent, and arms connected to several IVs and beeping monitors.
I hadn’t rehearsed, and I don’t remember exactly what I said. But here’s the gist of what I recall:
I could see lots of tears and shock. It was so sudden—for my team and for me. The following Tuesday I dialed into the first board meeting Daryn ran. Of course he did great. As we disbanded, everyone wished me well. Every member of our board is a remarkable individual, and we’ve each bonded. So the goodbyes were emotional even wrapped in the plated armor of venture capital. As we hung up, I realized I was definitely no longer CEO. Took less than a week.
As it turns out, they decided my liver and heart were too weak to risk surgery to remove that huge clot. That led to three days of hospital inertia as the oncologists and cardiologists argued over what to do. On day five, Amy and a couple of MD friends started to question whether hospital purgatory was in my best interest (one of the hospital’s gifts to me was pneumonia!), and on day six they got me checked out and sent home.
The clot is still here. I don’t feel it. My blood pressure is excellent, my oxygen rate 99 percent, and I have no chest pain. But in my mind I know it is there, and I know that means it could detach at any second and kill me. I’ve always tried to live each day to its fullest, but this Damoclean time bomb makes saying goodnight to my girls all the more difficult.
I want to beat the odds. I intend to beat this cancer. I want to be at every gym meet and soccer game, to see the girls’ high school graduations, send them off to college, walk them down the aisle. Mighty AI has a shot at becoming an innovation benchmark in the breakout AI field. I want to help it become the standard for blending human and computer cognition. I want to enjoy (semi-) retirement with Amy. I want to become a better person, father, son, brother, friend, and contributor to society. I’d really looked forward to being a grandpa and taking all the cooing—and passing on the pooing.
So where to now?
Step one: Beat cancer. I’ve started chemotherapy. Lots of people are telling me that if anybody can beat the odds, it’s me. They mean well, and I appreciate the votes of confidence. I intend to put every ounce of my energy into proving an exception. Nothing would make me happier than to get back in the driver’s seat of my charmed life at home, work, and with friends and family.
But I need to be realistic.
Step two: Prepare for the fact that I will probably not beat this. The two-year survival rate for Stage 4 pancreatic cancer is under 5 percent—and that’s without the additional complications I have. The five-year survival rate is zero. To be part of the tail end of that distribution, I need to stay positive, rest, and minimize stress. I need to be unafraid to ask for help. This is not easy for me.
Step three: Find the silver linings and nurture them. I’m having a blast with Amy, Anna, and Elsie. I want to create special memories for them and be a role model.
Lastly: Heck, maybe my weird life can foster some positive community dynamics. It wasn’t easy to write this piece, and at first I did so intending to keep it private. But some close friends encouraged me to share it. If I get a soapbox, here’s my short shtick: We are all so fragile. Each day is precious. And the most important parts of our lives are the relationships we invest in. I certainly feel that way, as my friends and family—“Matt’s Army”—have Amy and me awash in love that feels like a mighty waterfall.
Editor's note: Matt Bencke died at home on October 18, 2017.
