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In May 2023, my husband, Mike, had a scan that changed our lives.
He wasn’t having any symptoms — no headaches, no memory issues, no slurred speech. He was 37. We were a typical busy family raising two young children. That’s what made it all the more shocking when we learned he had a brain tumor.
Mike had decided to get a full-body MRI through Prenuvo, a service that offers proactive health scans. We certainly weren’t expecting anything major to show up. But when the scan came back, the report mentioned “a large, worrisome mass consistent with a glioma/glioblastoma” in his left frontal lobe.
It came out of nowhere, and it was terrifying. At first, we didn’t even know what that meant. We had so many questions, and then we Googled “glioblastoma.” That moment was the start of an emotional rollercoaster.
A Race to Find Answers
Katie & Mike
Once we saw the results, we sprang into action. We got Mike in for an MRI with contrast right away. His scheduled scan happened to be the same day my father passed away, so we didn’t tell anybody about his tumor at the time because of all the chaos.
The first neurosurgeon we saw recommended not removing the mass and instead opting for a wait-and-see approach. Everything I researched online showed how important it was to see a specialist who treats brain tumors, so we decided to get a second opinion.
We live in the San Francisco Bay Area, so we were fortunate to be close to the University of California, San Francisco. I requested an appointment, and we met with neurosurgeon Dr. Mitchel Berger.
Dr. Berger reviewed Mike’s scans and said that the tumor was a glioma. He said, “I know that I don’t have a full diagnosis of whether it’s an oligodendroglioma or an astrocytoma, but it’s a glioma. I would estimate between grade 2 and grade 3, but it looks more like grade 2.”
We went back and forth on whether to do the craniotomy with Mike awake or not, and we decided to do it awake. We were terrified, of course, but from that point forward, we knew we were in excellent hands.
Navigating the Conversation with Our Kids
We knew we needed to tell our kids about the tumor and surgery. At the time, they were almost three and seven years old. We tried to be honest, but in a manner that was age-appropriate.
We explained to our oldest that Daddy had something in his brain that needed to be taken out and that doctors were going to help. We also told her that he may struggle with bright lights and sounds, and he may not be able to speak right away when he comes home.
Facing Awake Brain Surgery
Mike’s awake craniotomy took place in June 2023.
Before Mike went into surgery, we played a song — Starship (All I Know) by MAB — that had become meaningful to both of us during those intense weeks between when we found the tumor and his surgery. It’s about a man who launches into space but promises to find his way back to the one he loves — and that message hit so close to home. The nurses let us have our moment together listening to this song, and then I remember watching him be wheeled away. The anesthesiologist came up to me and said, “I’ve got him.” It was incredibly emotional.
I felt immense relief when Dr. Berger said he was able to do a full resection of the lemon-sized tumor.
Getting a Diagnosis
At the time, Mike didn’t want to think about the brain tumor and what it could be. He really wanted to get his money right and make sure that we were set up as a family in case something bad happened. He focused on “How do I take care of my family if I’m out of surgery? How do I run my business if I’m out for a longer period of time, or if I die?” We had to have those very serious conversations.
On the other hand, I went full in on learning all that I could. Going into our appointment to learn the pathology findings, I was manifesting that it would be the best-case scenario among the options we knew it could be. When the neuro-oncologist said it was a grade 2 oligodendroglioma, I was relieved. You’re not hoping for any type of cancer, but that’s a better-case scenario. Mike, on the other hand, doesn’t want to worry about it until he needs to. When she said, “This is a form of brain cancer,” that hit Mike really hard, and he got emotional. The two of us had very different reactions.
Adjusting to a New Normal
It was hard once Mike returned to work after surgery. Our marriage was struggling. Our interpersonal relationships were struggling. A lot was going on, and there was so much stress. One of our doctors said to us, “This level of stress that you’re working under right now where you feel like you have to do it all, and if you aren’t doing it, everything’s going to crumble, that’s not good for anybody, let alone someone who’s trying to deal with their own cancer diagnosis.”
Since then, Mike has offloaded a lot of work and found the right cadence of what he needs to be involved in versus what someone else can do for him. He’s taken on less, and we live with less. Getting in touch with our values about what we want our lives to be has made a significant difference.
My single best advice to anyone who gets a diagnosis like this is to get into therapy immediately as a family and to find a therapist who knows about cancer experiences. This news is quite a knockdown to a young couple with young kids, and then all of a sudden, you’re presented with your mortality.
Attending the Northern California Brain Tumor Walk
Last year, Mike had some friends come out, and we all walked together at the Northern California Brain Tumor Walk. He met some people who gave him good advice. It’s a nice day to remember and be a part of the community that we’re a part of. No one wants to be a part of this community, but you get to be a part of it anyway. At least, you can meet people, learn things, and help each other.
I want to be a part of the community. I want to keep my finger on the pulse of things. We were hit hard in that moment, finding out that he had it, but we are so fortunate to get the diagnosis that he got and the prognosis that he has now. We do our best to give back because not everyone has the ability to do that.
It’s important to support the National Brain Tumor Society (NBTS) because of the level of education and community building that they do. Plus, we need to keep the money coming to find new therapies.
I worry about the cuts in medical research funding. What if research funding had been cut before vorasidenib was discovered and later approved? That’s such a groundbreaking treatment for Mike’s type of brain tumor that happened because of research funding. Funding things gets things done, so we support NBTS for the research they fund and the advocacy they do to get federal research funding.
Join NBTS at an Upcoming Event
Join thousands of passionate individuals across the country for an unforgettable experience at one of our National Brain Tumor Society events! Whether you walk, run, ride, or rally with your community, your participation will accelerate critical research, fuel advocacy efforts, and provide essential patient navigation and support.
