Gray May
Motherhood post-brain tumor: a ghost story
I’m writing this on Mother’s Day. It’s my second Mother’s Day post-tumor. I’ve been in a real funk today, despite all the effort and moments of joy bestowed upon me by my children and husband.
The kids spent the morning making me cards. They nicely arranged pillows on a reserved VIP seat. Lydia crafted a banner in my favorite color, hung it up herself, and offered to make me breakfast. Mike gifted me loose leaf teas from my favorite local shop, along with a fancy, temperature-controlled kettle, adorned with a black and white design that reveals colorful animals when it gets hot. We went to the park so the kids could scooter and practice riding bikes, and the weather was wonderful. Everyone else went to the grocery store for dinner ingredients while I stayed home in peace and quiet.
And yet, there was a nagging feeling dragging me down in between the lovely little pockets of sunshine and hugs. I tried not to give it much weight, since I have a history of getting weird on holidays. I’ve probably cried on every birthday I’ve ever had. I haven’t kept a tally on Mother’s Days, but I’d bet at least 50%. That doesn’t mean they were objectively bad, it just means that I cried at some point in the day for some reason or another. So many unspoken expectations and emotions. The game is rigged and my tears usually win.
But why today?
Maybe it’s my new medications. I started taking an anti-epileptic drug in December, after a neuro-oncologist confirmed that I’d had a partial-aware seizure in June. Yeah, that’s a whole thing now. And then more recently I started taking another medication because my new gynecologist thinks it’s likely that I have some level of endometriosis. Oh goodie, another future medical quest probably.
Or maybe it’s because I got laid off at the end of March after nine years with the same company. This happened right when I was hitting my stride again, less than a year after I returned from medical leave. It’s hard to have a United States salary at an international company in this economy.
I’m neither a natural nor experienced at job hunting or networking, so I’m stressing about that and not sleeping well. You know, since the severance and unemployment are going to run out before I know it, and we were just about to do an overdue house renovation, and I was going to finally buy a new car since I can drive again. And at the very least I need to not go bankrupt on childcare, which I need to have lined up in case I get a job, which I need to pay for childcare…Cool cool very cool. Anyway, here’s a shameless link to my LinkedIn! (If I don’t know you in real life, please send a message and introduce yourself.)
Could have something to do with the fact that yesterday I took Marty to a birthday party at a wildly overstimulating trampoline park at the far edge of my driving radius and that’s a recipe for crashing.
Or maybe, just maybe and most likely, I’m still processing eeeeverything that I’ve been through. Reckoning with how lucky I feel to be here every day, in this world, with the people who I love. (Heck, sure, even those I don’t.) Desperately not wanting to fuck up any chances to live, and I mean really live my life.
It can get a bit overwhelming. I deserve a moment to myself to appreciate this dazzling shitshow with all its heft and figure out what to do with it. I’m not totally sure how to name this feeling I have today. A swirl of grief and guilt? Add a little splash of depression?
I wager you’d feel similar, too, if you participated in the gauntlets and marvels of modern medicine, gaining a brand new appreciation for science and spirit, winning the lottery of simply being alive, and then you had to…apply for jobs? While semi-disabled-depending-on-the-situation?
No wonder I’m having a hard time appreciating Mother’s Day, or any other day. It’s so hard to be a parent—with or without a job, in health or sickness.
Motherhood exposed in me a tug-of-war of desperately wanting to be near or far from others. I remember leaving the house unaccompanied for the first time when Lydia was a newborn. As I drove away, I suddenly understood the freedom of personal space. Prior to that, I loathed being alone. I grew up in a big family with a lot of siblings, and I started training for competitive gymnastics when I was six years old, so chaos and intensity were all I knew. Quiet, privacy, and stillness were unfamiliar and therefore uncomfortable. Parenting exposed the discomfort of solitude as a lie. I underestimated the relentlessness of parenting a newborn. I felt suffocated. I longed to be alone.
I started a new job when Lydia was six months old, making a pivot from newspaper photo department jack-of-all-trades to project management at a huge e-commerce company. At an internal networking event, someone asked me as an icebreaker what my ideal vacation would be. All I could come up with was, “Anywhere alone.” On the other hand, nearly every day after daycare drop-off, I would get on my way and have a sudden sinking feeling, an eerie realization that something was missing. No backseat passenger. Just me. Spooky. Sad.
My whole way of being changed the day I was admitted to the hospital in 2024. When I was diagnosed with my brain tumor, I had been burnt out for a while. By “a while” I mean a couple of years. Laid up in my hospital bed, I remember commenting to some of my coworkers, “I know I said I needed a break, but this isn’t exactly what I had in mind.” The part of my identity tied to my career severed shockingly easily. It snapped like a twig. Work, who? Mother, however—a fresh green sapling bending over in a hurricane, desperate to keep growing, no matter how many twigs or leaves lost.
When I was first hospitalized, I once heard, “MOM!” clear as day in the middle of the night. After we gave my tumor a name, and seeing the ways this hardship was also illuminating the breadth and depth of love in my life, I came to think of Pinky as something like another child. After all, it grew in my body and sustained itself through my blood supply, and profoundly changed my relationship with the world and life itself. I carried it within me longer than I carried my children in my womb. Sometimes I feel bad that I describe it as stupid. Then I remember how it almost killed me and still might someday. It’s complicated.
Despite these indissoluble threads tethering me to my children and this world, when I woke up after my first surgery, I couldn’t easily remember exactly how many kids I had or how old they were. Mike would spend as much time with me at the hospital as he could. One day he stepped out of the room while I called my mom and I forgot he was there, waiting to return to my side. I would count people in a room and always forget myself. Sometimes the room itself was flipped around. When I finally came home for good about a month later, it was like everything was happening around me. Everyone had survived without me. I felt like a ghost.
Today, I’m still steadily regaining ability, stamina, and strength. In November, after another clear scan, a sudden wave of emotion swelled up out of me during the follow up with my radiation oncology nurse. She described treatment and its aftermath as “climbing a mountain.” I’m still on it, and I will be for a long time. Yet I’m starting to take more risks and just do more. I go to the gym. I’ve been to two shows. I’m seeking connection in my community. I’m trying to have fun. I played frisbee with my kids in the spring sunshine and I fell over a bunch of times. It was actually hilarious.
I found a note in my phone from 1:30 a.m. on Mother’s Day. It said: The opposite of pain is not joy. The opposite of pain is no pain. Joy is something else entirely.
Did everyone else already know this? That pain and joy are not mutually exclusive? It’s been so easy to feel like a huge bummer since the tumor, even since before that. It’s been easy to feel like I’m failing as a parent and a partner, like there are so many ways I want to serve my family but fall short, everyone having to look out for me in ways I didn’t expect, not this young. Here is the mouse hole through which the grief and guilt snuck in to nibble my delicious snacks.
But on this Mother’s Day, I felt so much pride, too. Despite all the ways I can’t or things are hard, the kids are all right. They are so much more emotionally intelligent than I was at their age (and much older, and maybe even still.) I don’t by any means take full credit, as they have an amazing father and are surrounded by so many who truly care for and nurture them, too. But I really am part of that. I’m not a ghost. I am alive. Despite what it may look like sometimes, I am happy to be here.
Go Gray in May
May is Brain Tumor Awareness month. I honestly like to talk about it, so my inbox is always open, and no question is too weird or dumb. I am not an expert in the science or research by any means. I’m just living out my own experience and trying to wrap my head around it along the way.
If you want to learn more, I gathered some resources below. I am not affiliated with any of these organizations, and I have no idea if these are the best or only ones. Let me know what’s missing from my radar. I’m only starting to dip my toe into things like this because it was too hard to look at when my diagnosis was still fresh and raw.
Brain tumor resources 🩶
Sarcoma resources 💛
Sarcoma Awareness month is in July, but I don’t see any reason to limit talking about it to just one month of the year. As rare as brain tumors are, sarcoma is even more rare.
Solitary Fibrous Tumor resources 💛➕
All types of sarcoma are rare. My tumor was a Solitary Fibrous Tumor, a type of Soft Tissue Sarcoma. It can occur anywhere in the body, not just the brain. When the primary tumor does occur there, they are commonly mistaken for meningioma at first, like mine was, as that’s a very common type of brain tumor that looks similar on imaging. There’s no specific organization for SFT that I’m aware of, so for more info about that, I highly recommend following fellow SFT patient Steve’s Substack, linked below.
