The 'Worry Stones' I Carry With Each Brain Surgery

Yesterday was a hard and awful day. It was the worst day, if you ask me. Well at least it got off to almost the worst of possible starts.

To be fair, it never promised to be a good day in the first place. When you start your day with a new medication, a bruised banana, a hastily gulped half cup of coffee, and an 8-a.m. visit to the neurologist, where you’re forced to think about the intricacies of your life and your health and specifically, the health of your brain… well, not really optimal conditions for an easy, breezy day.

Do you ever have those days where you are acutely aware of your mortality? Where you think to yourself, This is it. This is the news I’ve been waiting for. My expiration date is almost here. What will it feel like? Will it hurt? Will I be OK? What will happen to my kids?

These were my sad and terrible thoughts yesterday morning.

Having been faced with my mortality several times over in this brief lifetime, I would say the feeling is familiar, at least, but never comfortable. Never known and never sought after. The idea doesn’t terrify me anymore. I can look at my mortality from a distance, detached, almost through a deep, persistent fog. That is my diagnosis. I have brain bleeds. Damn, this is hard. Been here before. Huh, I wonder if the next brain surgery will be as scary since I’ve already done it? Will I heal faster? Should I be less scared because I know how this ends already? Or should I be more scared because I know what the healing process entails? I know just exactly how long and enduring the process of recovery is and how my friends still remind me: “Are you ever going to stop referring to your brain surgery? It’s like you have two ways of quantifying time: before your surgery and after your surgery.”

Is there any other way to quantify time? My first frontal lobe craniotomy, to resect a cavernous angioma with multiple hemorrhages, occurred less than 10 months ago. That’s not even one year ago.

Some of my friends, first-time mothers of young toddlers, still count the ages of their toddlers in months until the child is 3 years old. That’s 36  months! Documented months with pictures and everything.

Am I still allowed to count this earth-shattering, life-changing event, after 10 months? Twelve months? What about 36?

Ten months is barely enough time to grow a new garden, let alone knit together a new skull.

I still notice the screws in my forehead from my springtime craniotomy. Daily. I see the scar above my eyebrow every time I look into a mirror. “I barely notice your scar,” my friends will say to me. When I look into the mirror, it’s all I see. I rub the scar as a sort of angry talisman when I’m nervous, and my fingers search to find the tiny screws in my skull, an unwanted constellation along my forehead. Like a worry stone, these almost microscopic screws, only these worry stones never leave my pocket.

I carry the stones inside of me. Always.

And I wonder, as I bring this up yet again and even as I write these words today: are there unspoken friendship standards, normalcy standards, of how long we are allowed to talk about our catastrophic health conditions? A sort of rule book, a book of manners, a code of conduct for the things that make us uncomfortable and the things that we can’t pray away? “You seem fine,” I hear a lot. I hear that all the time. Too much. Is it supposed to be a compliment? I’m not sure. Because you see, I’m not fine, not all healed, and not the same. Most days I make my peace with my residual deficits and the fear, after almost 10 grueling months. And some days, I miss the version of myself I perceive used to exist before surgery.

Did she ever exist? It’s hard to know.

And yet, I am grateful most days to not have the stress of one of those damn ticking time bombs. One cavernoma out, four to go. One brain surgery complete. Success.

Until eight days ago. The story arc changed, dramatically. Stroke-like symptoms on a walk with my daughter and our dog. My neighbor called 911. An ambulance ride, my first ever. Acute hemorrhage, cavernoma, left parietal lobe. Possible seizure. Hospitalized. ICU. Two CT scans and an MRI with and without contrast.

My neurosurgeon comes by and visits me in the ICU. I smile at him, weakly, though the haze of my new loading dose of seizure meds and zero sleep. Up all night with neuro checks, vitals, a chest x-ray, blood work, and a 5-a.m. CT scan. Why won’t they let me sleep? Don’t they know my seizures are exacerbated by sleep deprivation?

He walks into my room and smiles. Grimly. “Well,” he says after a long pause: “You know what I’m going to tell you to do. You need to take this out.”

I brace myself. My back and shoulders go rigid. I steel my jaw. I am barely recovered from my last craniotomy, less than a year ago. I can’t do this again.

It took me over three years to get up the courage to go through with the last major procedure. Three years of scans and bleeds and arguing with my neurosurgeon. “What are you so scared of?” he would ask me, finally with a note of exasperation, after my years of stalling.

“Um… death?” I would respond drily. “It’s the first listed side effect from the procedure. Side effects may include death. I have three little kids. I’m not interested in dying yet.”

“You’ll be fine,” he would reply, over and over. “You are young and strong and will heal quickly. Get this out and move on with your life.”

So I did. February 25, 2016. Left frontal lobe cavernoma resection. I survived, I got it out, and I was trying my damnedest to move on with my life. First walking, then parenting my girls, cooking, driving, working, and at last, trail running. Piece by piece, amidst all of the setbacks and victories. The grit and tears and determination and sheer will. All the things.

So why am I here again?

It’s like a scene from a predictable movie, where the main character is stuck in a horrible cycle of recurring déjà vu. So here I am again, in the ICU. Acute hemorrhage, this time in a different region of my brain. And the surgeon looking at me almost apologetically as he says, “You know what I’m going to tell you to do.”

And my determined yet medicated response: “And you know what I’m going to say, right?” I manage a weak, half-hearted laugh.

He shrugs. We’ve been at this same dance together for almost six years now. Involuntarily, I touch the screws on my forehead. My worry stones.

I am sent to a new neurologist. Yesterday’s appointment. I met this doctor in the hospital — kind, smart, engaging. He actually knows what cavernomas are, these rare, vascular malformations. Finally a new doctor I don’t have to explain my diagnosis to. This is a rare find in itself.

In the hospital last week, he was more conservative. “At some point,” he said to me when we first met, “you’ll have to decide how many craniotomies you’re willing to do. You have four more of these lesions. Are you going to keep taking them out? Maybe we should explore seizure medications at first.”

God I hate seizure medications, but I liked being on the stall-from-surgery plan again. I liked this new doctor. His plan felt safer.

Until yesterday. The new doctor had since been updated on my files. He looked more closely at my scans. Yesterday, he observed the motor deficit in my right hand.

Suddenly we were talking about how I had actually had a stroke during this last hemorrhage, which was news to me. I’m used to talking about bleeds. I’m fluent in the language of cavernoma hemorrhages. But a stroke? And possible seizures?

No. This wasn’t in the script. I hate improvising. I much prefer well-researched plans, thank you very much.

It got worse.

Bad bleed. UCLA, second opinion. Option of functional MRI and cortical mapping, brain surgery while you’re awake. Eloquent area. Speech and motor function. Surgery. The question is where and when, not if. “Your best option is to get this next cavernoma out.”

I googled “cortical mapping” when I got home. It is an incredible procedure. I might add, it is an amazing and wonderful procedure as long as you’re not the prospective patient.

Yesterday, after this terrible appointment with the kind new doctor, I sat numbly in the car. Figuratively and literally. I still can’t really feel my right hand after last week’s stroke, so putting on my seatbelt took extra flexibility and finessing. I thought about my expiration date as my husband eased the car onto the freeway. Is this it? Is this where my story ends? I thought about drilling and duras and MRIs and seizure medications and research hospitals. I thought about my three beautiful children and how I was just starting to feel a little more like myself. I thought about the pre-dawn 4-mile trail run I went on with my friends the same morning I had the stroke.

My hands unconsciously touched my forehead scar, and my fingers found their way to the already well-worn screws. I am not expired yet. We will do this again, and it will have to be OK.

I hope it will all be OK.

I came home from yesterday’s neurology appointment, and I cried. Hard. I slept. I looked up brain mapping and made a step-by-step plan for the second opinion. I cuddled with my kids. I walked to the ocean and saw the most beautiful sunset. I ate homemade soup.

And I remembered then: I know I am more than my scars. As terrible as it is, we have walked this messy and sometimes beautiful and distinctly familiar road before. And I remember, sometimes just in fleeting glimpses, there are many more pieces to me, more than just the broken ones.

I know I will always carry these worry stones inside of me. Soon, I might even add to the constellation of glittering screws and tiny plates across my skull, whether I like it or not. But remembering the things I love, that I would be so worried to leave behind, gave me a little extra courage and a little extra peace last night.

It was all that I could manage. It would have to be enough, for that day.

Strength for the journey.

Follow this journey on Broken Brain, Healing Heart.

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Thinkstock photo by bokan76