Only Things Temporarily Hidden
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Astrocytoma Blog Chapters 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12 , 13, 14, 15, 16
Twenty-four hours ago I finally received the PET scan report I’d been waiting weeks to read. I thought it would answer the question that had quietly followed me through most of July. Instead, it left me thinking about something entirely different.
The story really began several weeks earlier.
At the beginning of July, my healthcare coverage changed almost overnight. For the first time since recovering from brain surgery, radiation, and chemotherapy, I found myself thinking less about my health and more about whether I could afford the tests my doctors wanted me to have. Nothing about my brain had changed. My MRI still showed the same slowly enlarging area that my neuro-oncologist wanted to investigate. What changed was everything surrounding it.
After years of simply showing up for appointments, suddenly I was looking at costs, wondering what insurance would cover, and trying to understand a healthcare system that no longer seemed to understand me.
Then something unexpected happened.
A research coordinator at UCSF contacted me about participating in a study involving a different kind of PET scan called FET PET. Rather than using the tracer most people associate with PET imaging, this scan used a newer one that researchers hope will eventually help distinguish between recurrent brain tumors and tissue that’s still changing years after radiation treatment. Better yet, because it was part of an ongoing research study, I could participate without worrying about the cost that had suddenly become part of every medical decision.
It felt like a door opening just when I thought another one had quietly closed and a few days later the consent forms arrived.
I expected the usual legal paperwork that most of us scroll past before clicking I Agree. Instead, I found myself reading page after page of scientific language that seemed written for researchers rather than patients.
Long before I became a science fiction author or a brain tumor patient, I spent years designing user experiences for software. One of those companies was DocuSign. My job back then was to make complicated systems feel simple enough that people could stop thinking about the software and focus on what they were actually trying to accomplish.
Years later, I found myself signing one of the most complicated documents I’d ever read… through the very software I’d helped design.
So I did what felt natural… I asked for help.
Not from another doctor, but from a handful of AI systems. I uploaded the research paperwork into ChatGPT, Gemini, Vince AI, and even AstroCare Companion, an AI I built to help people understand the overwhelming amount of information that comes with hearing the words, “You have a brain tumor.”
I wasn’t asking any of them to make the decision for me. I simply wanted someone to translate a language I didn’t speak.
What surprised me wasn’t that they agreed with one another. It was that each one explained the same document from a slightly different perspective. By the time I’d finished reading their responses, the paperwork no longer felt intimidating. It felt understandable.
I signed the forms a few days later and wondered what exactly had my doctors been seeing on my MRI?
A few days before the scan, I met a close friend for lunch.
Like my family and close friends, he already knew why I was heading to UCSF. We ended up talking about the PET scan and how different it was from the kind most people have heard of. I explained that the researchers weren’t simply taking another picture of my brain. They were trying to answer one of the hardest questions in neuro-oncology. Was the area on my MRI becoming active again, or was it simply brain tissue that was still changing years after radiation treatment?
He thought about it for a moment before smiling:
We’ve only known each other for a few years, but in that time I’ve discovered that Star Trek isn’t really something we watch. It’s something we use to think with. Living in San Francisco makes that feel even stranger, this is the city where Starfleet Academy is imagined to stand someday, and after a while the stories stop feeling like science fiction. They become another way of talking about curiosity, uncertainty, and the future.
A few days later, before most of San Francisco had finished waking up, I found myself heading downtown for the scan. The procedure itself was almost disappointingly ordinary. After the injection, I spent close to an hour sitting quietly while the tracer circulated through my body. I’d imagined that hour would be filled with anxious thoughts, but instead I found myself watching people walk through the building, almost like passengers waiting for flights in an airport. Everyone had somewhere to be and everyone seemed wrapped up in their own story.
When it was finally my turn, the scan was over faster than I expected. After years of MRIs that seemed to last forever, I climbed off the table almost wondering if we’d already finished. I stepped outside into the morning air, climbed into a Waymo, and went home.
Nearly two weeks later I returned to UCSF expecting to finally hear what the images had shown. As me and Neuro-oncologist walked toward his office, something felt different. He was quieter than usual. He kept looking down as we walked, almost as though he were organizing his thoughts before saying them out loud. It wasn’t enough to alarm me, but it was enough to make me wonder whether he already knew something I didn’t.
Once we sat down, he opened my MRI scans and reviewed the same area we’d been watching for months then, instead of opening the PET report, he looked at me and said something I never expected. He didn’t have it…
In more than twenty years of practicing Neuro-oncology, he’d only seen something like this happen a handful of times. Somehow the report from the research study had never made its way back to him. He apologized, told me he’d contact the research team himself, and promised he’d get the results as quickly as he could.
When I left the hospital, I didn’t feel frightened. I didn’t feel relieved either. Mostly, I felt suspended. Instead of going home, I started walking west through the city toward the Pacific Ocean. I called a few family members while I walked, trying to explain what had happened, but even as I heard myself talking, it felt as though I was describing somebody else’s day.
Sometime during that walk my phone rang. It was my Star Trek friend. We share our locations with one another, and he’d noticed I wasn’t heading home after my appointment. Without saying much, he got in his car, found me walking toward the ocean, rolled down the window, and asked if I wanted a ride.
For all the remarkable technology surrounding modern medicine, that’s one of the moments I remember most clearly. Not the scanner. Not the report. Just a friend who noticed I wasn’t okay before I did.
For the next several days life became strangely ordinary. I’d hike through the Presidio, play games with friends on Discord, answer emails, and lose myself in YouTube videos that had absolutely nothing to do with brain tumors. At least that’s what I told myself.
At least that’s what I told myself. One morning I was sitting on my balcony with a cup of coffee when a simple thought crossed my mind. If the report already existed… why hadn’t anyone seen it?
That question bothered me enough that I stopped waiting and started looking.
Instead of calling the hospital again and hoping someone could transfer me from one department to another, I asked Gemini if it knew of an internal phone number for the research group running the study. To my surprise, it found one. A few minutes later I was talking to someone inside the research department.
She seemed surprised that a patient had managed to reach her directly, but after looking up my information she immediately found my study. That’s when she explained something I never expected.
The reports didn’t automatically go back to the doctors. One person reviewed them before forwarding them to each patient’s neuro-oncologist.
She mentioned that the person responsible was preparing to leave for another job and had been incredibly busy.
I remember sitting there quietly for a second because after imagining all sorts of complicated reasons for the delay, it turned out to be something remarkably human. Nothing had gone wrong with my scan. Nothing had disappeared. It was simply waiting for someone who already had too much on their plate.
Before we ended the call, she told me she’d send the report to both my doctor and me as quickly as she could.
At two o’clock the next morning my phone buzzed from an email and there it was. After waiting for weeks, I finally had the report in front of me. I opened it… …and immediately realized I had no idea what I was reading.
The words weren’t frightening as much as they were confusing. So I did the same thing I’d done with the consent forms. I uploaded the report into ChatGPT and AstroCare Companion. A few friends happened to be online that night, so they listened while the AI explained what the report was actually saying.
The more I understood the medical language, the more I realized that the report wasn’t really telling me yes or no. It was telling me that there was something there, but it wasn’t able to confidently define what that something actually was and that was both comforting and frustrating at the same time.
Before the PET scan, the question had been whether the enlarging area on my MRI represented radiation necrosis, the delayed effects of treatment, or whether my astrocytoma had begun growing again. I suppose I expected the scan to settle that question once and for all. Instead, it narrowed the mystery.
The scan found activity in the same area my doctors had already been watching. One of the measurements landed just above a level that can sometimes suggest tumor, but instead of calling it a recurrence, the radiologist described the findings as equivocal. In medicine, that’s a careful way of saying, “We can’t honestly tell you what this is yet.”
This wasn’t just a report about a scan, It was also being interpreted in the context of everything that had happened over the last several years. My original tumor was an IDH-mutant astrocytoma, a type that generally behaves more slowly than many other brain tumors, and I’d already undergone surgery, radiation, and chemotherapy. Before the PET scan was ever performed, neuro-oncologist had even mentioned that he suspected the enlarging area might simply represent radiation necrosis rather than active tumor. The PET scan hadn’t erased that possibility. It had simply added another clue that still didn’t fit neatly into either explanation.
Right now, the report tells me there really is something there. What it doesn’t tell me is exactly what that something is. I only received these results about twenty-four hours ago, and I still haven’t had the opportunity to sit down with my doctor and hear how he interprets them alongside my MRIs and everything else he knows about my case.
Part of me still hopes he’ll look at this report and come to the same conclusion he was leaning toward before the PET scan was performed. That what we’re seeing is simply brain tissue continuing to change after radiation treatment, almost like a scab that has to finish its own healing before the picture becomes clear.
As I’m writing this, I’ve only had the report for about twenty-four hours. I still haven’t had the chance to sit down with my doctor and hear how he interprets it alongside my MRIs and everything else he knows about my case. Part of me still hopes he’ll look at everything together and come to the same conclusion he was leaning toward before the PET scan, that what we’re seeing is simply brain tissue continuing to change after radiation treatment rather than an active tumor. I honestly don’t know if that’s what he’ll tell me.
I suppose that’s really why I wanted to write this today. Not because I have answers. I wanted to capture what it feels like to live in that strange space between asking a question and finally hearing someone else’s answer. Hopefully, the next time I write about this, I’ll know a little more than I do today.
UPDATE August 6th
I received a call from my neuro-oncology team this morning, and it was encouraging.
They explained that some of the numbers in my PET scan report are general research statistics and not something that should automatically be interpreted as my tumor returning. There is still an area they’re watching, but based on what they know today, they aren’t treating the report as evidence that my Astrocytoma has come back but rather necrosis, a scab that is so small typical instruments can’t detect it. That’s good…
