The one thing I said I would never do is whole brain radiation. Never, ever. That was the line. I was too scared of cognitive decline, that I wouldn’t be able to write, talk, walk or remember, and there is so much good stuff to remember.
I was diagnosed after going to the ER with a seizure that could be more gently characterized as episodes of visual changes. At intake, it was about 9 p.m. I insisted to the nurses and everyone who came by that I almost certainly had brain mets, but I still had to wait until after 3 a.m. for retinal detachment to be ruled out before they would put me on the list for an MRI. The ER was mobbed, and I spent the night on a stretcher in a hallway, using my coat as a blanket. I had an MRI the next morning, and while I was on the scanner I missed a call from my boss. Good remote employee that I am, this caused my heart to pound more than the impending test results. I kept muting and unmuting myself so he wouldn’t hear the sounds of the ER around me. This was actually the most surreal part of the day. The brain mets were known, as far as I was concerned; I didn’t know how I was going to explain them.
After the scan, they moved me out of a hallway and into an exam room, and some poor innocent ER resident came in and pulled my MRI up on a computer. I could see a handful of lesions, pretty big ones, but I couldn’t get a good look because the guy was clearly accustomed to looking at X-rays of fractures and lungs and not to scrolling through slices. So I didn’t see any of the other slices, but it seemed like the size of at least one of the lesions was pushing what could be managed with SRS, which as a treatment modality of course seemed comparably benign, and I’d have no objection to using it. I didn’t have a death wish with the brain mets, just an aversion to WBR.
They topped me up with Ativan and a massive dose of steroids and instructed me to go to my clinic, go straight there, right now, and I agreed. We stopped at the house so I could take a shower and put on makeup and change into nice clothes because I wasn’t facing The Institute looking like I’d just suffered a few hours of intermittent seizure activity then spent the night in a hallway before being told I had multiple brain mets.
The main thing I learned from that first meeting was that it was a lot more than three lesions. It was probably closer to a dozen. Hopefully that ER guy has since learned to scroll. When we were alone again, I told my husband that if they wouldn’t do SRS there, and we couldn’t find another institution to do it, and I couldn’t get tucatinib, that would be it. I was calling it.
I was ready for all of this, because I’d been having symptoms. The main one being confusion with bright lights at night; I couldn’t seem to see dimension when there were headlights and streetlamps competing for attention.
Why didn’t I say anything? Because it felt like only brain mets could, ahem, bring me down. I wasn’t having it.
Months earlier, I had bought ELO tickets for me and my father. My dad shaped my deep love for oldies and classic rock from when I was an infant, and I remember listening to Face the Music on his turntable when I was 8 or 9. He saw them live a couple of times in the 70s, but anyone who knows the band knows that Jeff Lynne’s not a never-ending tour guy, and I didn’t think I’d get a chance to see him in my lifetime. I was happy to take more or bigger mets in exchange for that night. What was I going to do, get a scan and start treatment and jeopardize the concert? I waited 10 years for the brain mets, but I’d been waiting for Jeff Lynne all my life.
It was so worth it. It was one of the best nights of my life. I think my dad feels the same. Of course I never told him that I was waiting out brain mets so we could have that time together.
This is going somewhere, as much as any of my anecdotes go anywhere. When I met my radiation oncologist, he told me WBR was my best option. Number of lesions aside, the size of the lesions alone was likely to cause so much fibrosis that I may suffer more symptoms than I was having already, and it would make follow-up challenging. All I asked about was the risk of cognitive decline. His answers were good, all of them. He had stories about patients who had better outcomes than I imagined to be possible. I started to consider WBR. He seemed worried that I wasn’t processing the rest of it, like the fact I had a little army of brain mets capsizing some essential brain function. You’ll lose your hair, he warned. He showed me the Paul Brown papers on hippocampal-sparing WBR in combination with memantine. WBR became the reasonable option.
It raised a question I’d never asked before in course of my treatment, because I was always so sure I would do well: what if I didn’t deteriorate?
I didn’t. A year out, and it’s like nothing happened. I compromised everywhere here, from when I reported the brain mets symptoms to the treatment itself. Maybe it cost me, and it could cost me more later (I’ve likely exhausted most options for further brain radiation). But I did what I wanted, and my brain and mobility and independence are intact. It reassures me whenever I think about it that I’m capable of staying true to myself when it counts.
This is not the kind of blog I usually write. Drugs and science are really the only things I want to talk about. But I wanted to tell this story so that other patients know good outcomes are possible. Think about where we were with HER2+ brain mets when I started, when even without the brain mets, I felt like I was on a precipice, always pushing up against the limits of treatment. There was no space for risk. Waiting to see if Tykerb and Xeloda would be effective was one of the only times I ever felt like a patient. I didn’t know then how many rules I’d have to break to stay myself, to get what I needed.
Now it’s 2020, and I can’t even count the lines of therapy I’ve had. I just started DS-8201. We’ll check in on the HER2+ pipeline in a future entry.