The Best & Worst of (my)Brain Surgery

The best part of having brain surgery is being able to blame everything on brain surgery.

Forget what I’m saying mid-sentence? “I’m sorry it must be the brain surgery.”

Miss an appointment because I wrote it on the wrong month in my day planner? “I don’t know if I mentioned it but I’m recovering from brain surgery.”

Walk away from the stove, in the middle of cooking, get distracted, forget I’m cooking, but can’t smell the burning food to remind me I’m cooking because I lost my sense of smell during brain surgery… *pointing to head* “brain surgery.”

The worst part about having brain surgery is that I mostly didn’t do those things before. I mean it is nice to be able to blame the brain farts and appointment thing on something- because that’s not new, but the walking away from the stove thing is new. I made a bowl of ice cream 2 nights ago for myself then proceeded to get ready for and get into bed. It turned into dessert in bed as my partner reminded me (“Um honey? This is totally unlike you to walk away from ice cream, but here you go.”) before it completely melted. I’m physically different, I have a mental fog about me, and I am learning to navigate without a highly underrated sense.

The surgery to remove my large grape-sized benign meningioma couldn’t have gone better, as far as I know. Benign is a bit of a misnomer with any brain tumor just because a growing mass in the brain will eventually stop being benign. And since mine was in an ideal spot for huge tumors- the olfactory groove (between my eyes, back behind my nose)- it could’ve gotten a lot bigger before any major symptoms started showing. I’d been having symptoms for months and even years, but the brain is wild- there was no way we could know if any of the symptoms were even caused by my tumor. The headaches? Yes, for sure. But the tinnitus, vertigo, fatigue, nausea, blind spot in my left eye after exertion- those were harder to predict (complicated by the covid long haul symptoms that led to the MRI that found the tumor). Since I’m not getting any younger and my tumor wasn’t getting any smaller I went ahead and opted for surgery, praying for relief from at least some of my symptoms. I give my surgeon all the praise for getting the darn thing out because it was tucked up in there. I have a cool half headband scar (left ear to middle of my forehead) to show off his handy work- no minimally invasive technique for that one I’m afraid.

I prepared for surgery by writing my first book. I called my friend and writing coach to have what was in hindsight a dramatic conversation asking her to please write my book if something were to happen to me during surgery. Her reply, “yes, my dear I’d be honored to, but YOU are going to write your book BEFORE your surgery”. So, in 3 months I pumped out 9 chapters which I’m still afraid to look at and which will sit there and marinate while I write book two. I love you, Kristen, for making me do that. One, because it’s done. And two, because my foggy brain can’t imagine writing it now!

Coming out of surgery I was like an infant. I was home in 3 days, everything completely textbook and beautiful healing. My amazing people fed me and cared for me and made sure I was warm and happy and safe. And I slept. I woke up to take meds and eat and then I slept. I laughed with family and then I slept. Iced my face, slept. This went on for about 2 weeks with a bit longer stretches between naps. Around 2 weeks it was a bit less beautiful and textbook feeling with the pain and the swelling and the loss of smell reality and as they say, the honeymoon was over. My first attempt at writing was maybe around 4 weeks- I fell asleep before I finished my morning pages. I started cooking simple meals around 6 weeks. Slowly I started reengaging with current events and writing my pen pal, posting on social media, and attending virtual meetings (recovery and nonprofit). I can’t say I’ve started ‘work work’ yet though even at 13 weeks. Scratch that. I am parenting 5-year-old twins and a 10-year-old during a pandemic at ‘masks optional’ schools which also means I’m now homeschooling 2 kindergarteners until their school opens back up so I HAVE started work, just not organizing/nonprofit or writing work.

I got myself a pink walker. I’m 43 and I was so excited about this walker. I was fine to walk, I was just afraid of dizziness and wanted security, so I scooted around with my pink walker for a few weeks. I made it all the way to the doctor’s office from the parking garage at my 2 week follow up, and to the stop sign when I started my daily walks- with a seat just in case I needed a break. She’s still parked in the garage, trying to decide whether to pass her along or save her just in case I need a pink walker again for some reason.

At my follow-up appointment 5 weeks after surgery my Neurosurgeon was so positive. I was so proud to report that I was cooking some and walking some. But doc. “When am I going to feel like creating again?” I really wanted an easy answer on that one. I wanted him to say, “Give it another month, it’ll come back.” Or “2.5 weeks exactly”. He said “You may not want to. You’ve reached the point where you have to do things in order to want to do them again.” Probably more neurosurgeon-y than that but he was basically saying it was time for me to start pushing my limits in order to start to feel motivation to write and create art again. Now at 13 weeks I’m still very uncomfortable with my level of motivation and output- but I’m trying to give myself a bit of grace too. There is fear that I imagined my calling to write. There is fear that my thoughts won’t ever explode again into the “go write this down NOW” inspiration. I’m chewing on chapter one of my memoir but it feels way tougher than I expected it would.

There is grief. The first rain shower was the hardest. And the first bowl of flavorless spaghetti. I prepared for my loss of smell as best I could- I knew that the chance of anosmia was quite high with my tumor- it was right on the olfactory nerves. I went around Atlanta the weekend before my craniotomy smelling things: all the food, baking cookies, bread, magnolia blossoms, coffee, essential oils, gas, cigarettes, cologne, candles, dryer sheets, grass- we had a whole list. My family was patient with me running across the house “wait let me smell that!!” before they took a bite or put away their cologne or lotion or whatever. The only items I missed on my list due to lack of opportunity were rain and puppy breath. I miss smelling my kid’s hair. Food is quite the chore. Textures are as important as salty and sweet (my 2 dominant tastes) without being able to detect any flavors outside of salty, sweet, sour and bitter. I don’t think I ever truly believed them when they said, “most of taste is smell”. It is so true. If I remember to write about smells, it will be completely from memory. It’s so weird and sad. Some days I’m relieved. No fart smells. Or hot garbage on trash day walks. And kale and broccoli don’t smell or taste like anything. I have no idea what my current lotion smells like, only that my husband likes the scent and that it feels good on my skin. I love it when I go on walks with my sister and she tells me all about what she’s smelling. That makes me happy.

I forgot to mention the symptoms from before surgery? They are gone! The headaches I had are gone as well as the tinnitus, vertigo, and the nausea. Thank goodness. Well the headaches I get now are different, hopefully just the wound healing type. The surgery was worth it. I look physically different. I had a good side, my selfie side. My incision is on my selfie side. And the temporal muscle was cut so it’s all kind of… bumpy. My eye brow is paralyzed on that side. My body is different. It takes up more space than it did pre-illness and in a world that pushes thinness as the ultimate health metric that can feel hard when living with chronic health stuff. All that feels vain to write but I dig my scar, and it’s still my good side. Just different.

We use the phrase “new normal” a lot don’t we? That doesn’t feel quite right. I am getting used to this new different evolution of me. I get commended for being brave and strong through all of this and that doesn’t feel quite right either because I don’t have an option. We all have our things that shape us and grow us and mold us into the next evolution of ourselves, the next new different. I don’t want to diminish any of my hard or your hard either.

I’m excited to get farther away from my surgery. I’ll have annual MRIs to check for regrowth which is common with these boogers, I’m excited to feel what post brain surgery me is supposed to feel like, full writer, fully healed and until then I’ll keep fumbling around doing my best.

I hope some of this made sense. If not, I just had brain surgery.

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