Vultures

My friend and I were joking yesterday about tattoos.

For some reason, it felt really important to get a tattoo before my last surgery. Something that I could physically see or hold onto- something with predictability or permanence, in a life that felt too unpredictable and chaotic and disordered.

(I should mention that I have been to a tattoo parlor many times, since my sophomore year of college actually, with every intention of getting a tattoo, and have never been able to decide on a design. I have a hard time making decisions. My husband is truly a saint, putting up with this- not the tattoo design part, but just with me in general- you know, indecisive, in life.)

I had this idea of a tattoo of a simple swallow, a bird that has a lot of significance in my life, going back to my childhood. But maybe not even in color, for the tattoo- just the silhouette. And see, swallows mate for life, so there was the tiny part of talking my husband into getting a swallow tattoo as well. We could match. I was thinking on my left wrist. I know- predictable and cliché, but I wanted to be able to see it post-op, as I was laying around recovering.

The turn-around between the January 2016 hemorrhage and the February 2016 surgery was too fast. I mentioned the idea of a tattoo a few times to the medical folks that were preparing me for surgery, and they collectively cautioned that it was not a great idea. "Poor timing- too much risk of infection," they would say. "You'll have to wait until you're completely recovered at this point. Your craniotomy is just too soon."

Well- that was sure depressing. My brain surgery was so soon, that I could't even get a go-be-brave tattoo beforehand, for risk of infection affecting the procedure?

Damn. No brave, committed, mating-for-life birds. Damn, damn, damn, about the whole damn thing.

To be fair, I did wake up with a pretty significant tattoo, above my left eyebrow. The permanent marker, with my surgeon's initials (to mark which side of the head to perform the craniotomy), would fade over time. The angry red scar would eventually begin to fade as well, but it is still always with me- my unplanned tattoo. Permanent disorder, rather than the stability and order, and a sense of control, that I was originally seeking. 

I suppose I got my wish for that tattoo after all, although in a very different way than I originally envisioned.

February 29, 2016- three days post-op- eyebrow incision, left frontal lobe cavernoma resection

And as my pre-surgery bravery project (since I couldn't get that tattoo), working up my courage to go under the knife, I decided instead to cut off my insanely long hair, long golden curls that were down to the middle of my back. Before surgery, my neurosurgeon and I had discussed two different possible types of incisions- behind my hairline (preferred by a lot of people, because of cosmetic reasons, and no facial scarring), and an eyebrow incision, since this particular cavernoma was right on my forehead, above my left eyebrow.

We agreed on the incision behind my hairline, which would require shaving part of my hair, and a lot of staples.

And so, I decided to cut off my hair- thinking it would be a lot easier to have short hair instead of masses of tangled curls while laying around recovering, and, it would be easier to keep it short while growing out the shorn portion.

And honestly- I thought to myself- Cutting my hair will be good practice in working up my courage for this surgery.

Imagine my great surprise, then, when upon waking from the four hour procedure, it turns out that my surgeon had changed course, and had opted for a minimally invasive supraorbital "eyebrow" craniotomy instead.

So now- an eyebrow tattoo, and short hair! Quite a change.

And today? We are now considering craniotomy número dos, a parietal cavernoma resection. 

This is getting so ridiculous.

Which brings me back to my friend and I yesterday, joking again about tattoos.

See, I've kept my hair short since my February surgery. It was easier, and I rather liked it. I cut it even shorter, a pixie cut. I even experimented with color a bit- first very blonde, and then very dark, with red undertones. 

Still here, still being a little bit brave, just with hair color this time.

And then I have this stroke, and the ambulance, and the hospital again, and my neurosurgeon again- "You should take this out." Another potential surgery.

Naturally, like any normal, sane person, my first thought is: Well, maybe I'll have time now to actually get that tattoo!

Except- I've gotten a lot more cynical over the last year. Brain surgery will do that to you. Don't get me wrong- I rely on gratitude, almost every minute of every day, to get by. It's how I survive.

And humor. Dark humor. Lots and lots of humor.

So my friend and I are sitting on my couch, talking about the latest plan for my brain. My friend is a planner, and a medical professional, and she wants to know the plan. I tend to freak out hearing the plan in its entirety, or at least the end of the plan- surgery- so I like to break things into tiny little bite sized pieces. First get scans from hospital. Call UCLA. Send scans to UCLA. See what they say.

That was the end of my plan. I rather liked the end- it helped me breathe a little easier.

But my friend wanted to know all the options- craniotomy here in town at our local hospital, go to UCLA or USC (the big research hospitals), recovery, location, etc.

This got me thinking about the particulars, which makes me freak out a bit. Ok, a lot.

Which got me thinking about my unintentional eyebrow tattoo, and the swallows that mate for life, and really shaving my head this time (a behind the hairline incision for the parietal resection), and how on earth am I going to cope this time, again??

So I stop my friend mid-sentence, and I toss aside her perfectly logical medical plans, and say: "I think I should get a tattoo."

"Only this time," I continue, trying to find some humor in this crazy plan for two craniotomies in one freaking year, "I think I should shave that part of my head now, and get a tattoo on my scalp, for my surgeon to find, once the medical techs shave my head. I'll get the tattoo now, regrow my hair before the procedure, and then it will be like a surprise for the surgeon to find."

My redirecting of the conversation worked. We didn't have to talk about the brain plan any longer. Now it was just laughter about my absurd scalp tattoo, the next bravery project, the way that I might survive the overwhelming fear of this next procedure.

My first suggestion was a flock of vultures.

I thought it would be pretty hilarious for the surgeon to discover a flock of vultures under my hair, circling the site of the intended incision.

My friend and I laughed about the absurdity of just everything, the vultures and brain surgery, for a good five minutes. I even showed her my idea for this blog, with the lovely flock of birds, flying away in the top right-hand corner.

The birds, in my mind, are the vultures.

I told this idea to my mother later that day, and she grimaced. I persisted. Eventually, she gave up, and even began to laugh, contributing ideas to my scalp tattoo scenario.

"How about scissors?" I suggested.

"A saw," countered my mother. This made me laugh. Hard.

"A pirate map, with 'X' marks the spot, so the surgeon knows just where to cut," I reply.

I still like the vultures. My mother thinks this a terrible idea, and rolled her eyes at me to let me know her exact thoughts on the matter of my scalp tattoo.

Maybe I will get the wrist tattoo then, after all. Perhaps something more poetic- a phoenix, rising from the ashes. A dove, wishing me serenity and peace. A swallow, like the graceful diving swallows that my grandfather and I used to watch together when I was a little girl, as we blew downy soft feathers from our hands, which the swallows would use to line their nests in springtime.

Or a flock of vultures, on my left wrist, circling a saw. To signify the absurdity of it all, the humor, and my gratitude for finding a little bit of laughter in my day, at the ridiculousness of a secret scalp tattoo.

Because the reality is- pretty soon I might actually have that scalp tattoo, staples and hardware and all, whether I like it or not.

At least the vultures will still make me smile.

Worry Stones

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 8AM 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 okay? 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 until the child is three years old. That's thirty-six months! Documented months- with pictures and everything.

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

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 that 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, bloodwork, and a 5AM CT scan. Why won't they let me sleep? Don't they know that 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 that 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" later, 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 four mile trail run that I went on with my friends, the same morning that 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 okay. 

I hope that it will all be okay.

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 that 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, that there are many more pieces to me, more than just the broken ones.

I know that 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 that 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.