Thursday, December 29, 2016

The River

I can't sleep.

It has been a rough day. I feel like I have been drowning, gasping for air, just so many tears. A river of sadness, and fear.

This brain surgery project is proving to be much harder the second time around.

I've been thinking about this a lot, which I'm now realizing, is part of the problem.

See, this time around, I've been hospitalized. There is a lot of time in the hospital. Too much time. Endless time- minutes, hours, even days. So much time. And when you are drowning in fear of poor outcomes, it can feel so very hard to breathe.

The last time that I was up for brain surgery, for my first cavernoma resection in 2016, I had no restrictions prior to the procedure. I was trail running, every morning- out in the fresh air, under the fading starlight, and daily glimpses of sunrise. Breathtaking.  I was spending time with my friends- enjoying dinner and a glass of wine, together. I was working- social justice, advocacy, feeling inspired and committed to social and structural change. I was cuddling with my three beautiful children, inhaling their sweet scent each night as we put them to bed. I was committed to weekly date nights with my husband, the man who makes me feel so very safe and loved- my very best friend. 

The last time that I had brain surgery, of course- I felt fear. But I also felt strong and healthy, courageous, and empowered.

This time around feels so different.

Multiple emergency room visits. ICU. An ambulance ride- so very unexpected. Terrifying, really. Multiple hemorraghic strokes. Seizure medications. More hospitalizations. Immediate pending surgery, resection of another cavernoma, this time on my left parietal lobe.

There were no neatly scheduled visits to the neurosurgery clinic, this time. There was no time for a second, or third opinion. This was not a measured choice, an option, or a well researched and carefully considered decision.

This was a necessity. And it is so very soon. Tomorrow, in fact.

It is 12:04AM here in the hospital. Time stretches endlessly here.

I've allowed myself a few days to grieve. I've learned over the years that tears are cleansing, cathartic, and necessary.

But oh, the tears.

I worry about everything. Not making it. Leaving my kids. Permanent disability. Losing my ability to speak, facial droop, loss of motor skills on my right side.

I've been crying for three days straight. I cry as I wait to get the PICC line placed. I blink back tears as my children and friends visit me in the hospital. Silent tears leak out of the corners of my eyes as the kind night nurses do my vitals and blood draws, and the nurses discreetly notice my tears, and worry that my headaches are too painful.

But it is my fear that is causing me the most pain. "Are you okay?" they ask. "Would you like an ice pack? You can have some more pain meds in 30 minutes." And then: "How would you rate your pain on a scale of 1 to 10?"

My head pain is a 5. I'm used to pain- I'm a pro at pain. 

But my fear? It is beyond a 10. I have jumped into it fully, committed, and I am truly drowning.

I am laying in my hospital bed, in the dark. "Get some sleep," the nurses tell me. "Your next neuro check will be at 12:30AM, and a blood draw at 4:30AM."

I toss and turn. I think about my fear. I struggle. I literally cannot breathe.

And that's when it hits me: I am swimming the wrong way up this goddamn river. No wonder I am struggling against this massive, overwhelming current. No wonder I am weary, crushed by anxiety, and literally drowning.

I am flailing. And I am failing, swimming upstream.

And I realize- I am done with the fear. It is serving no purpose. I am clearly drowning.

I sigh deeply, in the dark. I am all alone, in the dark, in a hospital bed.

I will be okay, I say to myself, so very quietly. I don't really trust it, at all. I am testing it out.

I will be okay. Again.

I will be fine. I repeat this to myself, stronger, at least twenty times. Tears slide slowly down my cheeks. Only this time, they are tears of release, not the struggling sobs of fear.

I trust my surgeon. A mantra. Mantras are healing.

I can feel my body beginning to relax. 

I trust the outcome. The waters of release are slowly beginning to wash over my weary mind and soul.

I am grateful that there is a solution to this problem. I am choosing to fix a problem.

I am safe.

I am loved.

I will be okay.

The metaphor of the river soothes me. All of this time, I have been struggling upstream. Fighting. Unable to breathe. Panicking, and flailing. Drowning.

Courage, I realize, is embracing the river. Embracing the current, the rocks, the unforeseen rapids. The flow.

I can fight and struggle and be in that fear, and that is normal, and healthy, and okay. For a time.

I have to feel those big fears. I cannot simply pretend that this isn't scary, and that there are far too many unknowns.

But at some point- for my sanity and well being, I have to face that fear. I turn around. Slowly. I hold my loved ones close- my life preserver. I embrace the river. I lay down, in the current, and notice the sky above me, for the first time.

I can breathe again. 

I will be okay. 

This might not be what I expected. Nothing ever is. I look down into the river, and my eyes rest on the bright smooth stones, perfect for skipping. For the first time in a long time, I feel a new sensation. 

A tiny ripple of hope.

I can breathe again. I will be okay. I am choosing to be in the river, and flow.

Strength for the journey.

Monday, December 26, 2016


There are no days or nights in the hospital, it seems.

It's almost 11PM on Christmas Eve, and after sleeping all day, from the aftershocks of the latest brain bleed, and just so, so many seizure meds...

Well, I am finally awake and finally ready for visitors.

Oh, timing.

Business as usual, here in the hospital in ICU, even on Christmas Eve. Meds at 1:00AM, a CT scan at 5:30AM, and a few blood draws in between- Fa la la la la- all of the biggest, worst things at the ungodliest of hours.

My tiny little Christmas tree is my nightlight here in the ICU.

Christmas Eve, 2016. My nurse helped my husband and I decorate the tree. 
We decided it was a good therapeutic exercise for my sleeping right hand, 
tying on the ornaments.

Trying to find gratitude, in the hospital on Christmas Eve, away from my sweet babies and husband, is proving to be trying.

I am so angry that this cavernoma won't stop bleeding. My parietal lobe truly just needs to chill the f#ck out.

I am so grateful for my husband and my friends, for setting up this sweet little Christmas tree. All of the nurses and techs love my little tree.

I wish my husband could be here right now. We felt it best for him to be home with the three kids, on Christmas Eve. Especially with our eldest child, who is on the autism spectrum. My husband can only leave her, to visit me, for maybe two hours at a time. She's barely holding it together, and mostly, not.

I relate. I am also barely holding it together. I told my husband last night that I am overdue for a silent, non-stressful, non-hemorrhage inducing tantrum.

I am thankful for the hospital staff, and their humor. My day nurse refers to the bright yellow socks, for patients that are at risk of falling (from seizures, etc.), as "bright-ass yellow", which makes me laugh. She brings me truffles, and even a handful for my kids. "I don't have any children," she tells me. "I always work on Christmas. I like it," she adds, after a thoughtful pause.

The nurses in the ER and the CT techs are having an "ugly Christmas sweater vest contest". Half the staff is wearing Santa hats. The sweaters are truly terrible. The ugliest. It makes me laugh.

Finally, around 12:30AM, I fall asleep, tears in my eyes. What a crappy Christmas. Gratitude and all.

My night nurse comes in at 1:00AM, to put more meds in my IV. I barely notice him- a sign that I have been here a little too often as of late. I roll over, amidst a tangle of wires and tubes and cords, and fall right back asleep. Truly a gift.

I can't help but notice the phlebotomist, however, who comes in at 3:30AM to draw more blood. "What is your full name and birth date?" she asks me.

Woman, it is 3:30 in the morning, I want to say to her- Who in God's name knows their full name and birth date on this little sleep? "I'm going to turn on all the lights," she says, in a kind voice. I am not feeling kind. I want to tell her to get a headlamp, to let me lay in peace in the dark, and she can shine a tiny spotlight on my arm instead.

She turns on every light in the room, lights that I didn't even know existed. I wince at the blinding light. A sharp sting, as the needle enters my arm. I try to breathe deeply, and I close my eyes. "Oh! And Merry Christmas!" she tells me brightly, as she removes the needle from my arm, and gently affixes a cotton ball with tape to stop the bleeding.

You have got to be kidding me.

The great Christmas spotlights are turned off, and the cheery woman with the sharp needles slowly wheels her cart out of my hospital room. I sigh, and turn my head toward my little twinkling tree. It is 3:45AM.

That is when I notice- there are presents under my tree! I am so confused, for several minutes. I groggily grill my nurse: "Did you put those there? Did my husband come back? Why didn't he come in and say hello?" I almost sound angry, like I'm interrogating this poor man.

I blink back tears. This is coming out all wrong. I fall silent. I am so grateful for my thoughtful husband, and my sneaky nurse, who somehow managed to silently put presents and a full stocking under my tiny tree, between the hours of 12:30 and 3:30 in the morning. And I wonder, as if from far away, from a great distance- Who was watching the kids, while my husband snuck in here?

My nurse is noticeably proud of himself at his part in the great Christmas present plot- giddy is the word that comes to mind.

I smile, wearily, and drift off to sleep.

At 5:30AM, Christmas morning, I am wheeled down to CT for another brain scan. I am barely awake, until, the tech repeatedly slams my hospital bed into doorways, the elevator, the walls. The poor woman does not know how to drive the hospital bed. The nurse who escorts us down to CT is kind, and very, very chatty. "Where are you from, originally?" he asks. I mutter some sort of response- it is, after all, 5:30 in the morning. He is at the end of his shift, and wide awake. "Oh, I've never been to Oregon! I've been to Washington. I've always wanted to go to Oregon. Do you have a large family? Wow, three girls! You must be busy!" And on and on. He is so sweet, and so earnest. Bang. The young tech bumps the hospital bed into yet another wall. Even the chatty, kind nurse grimaces with me. "Merry Christmas," the CT techs say to me kindly, from underneath their Santa hats, as we arrive in the radiology wing of the hospital.

I swear that I am in some sort of holiday nightmare.

The tree, the presents, the bright-ass yellow socks, and the ugly sweater vests and sharp needles. Santa hats and truffles and IVs and hospital gowns.

My phone buzzes at 7AM. I must have fallen asleep, after the 5:30AM scan. I feel like a newborn- my days and nights are all mixed up.

It's my husband. And I realize, for the fourth or fifth time already, since I've essentially been up all night- It's Christmas morning.

I FaceTime with my husband, and watch the kids open all of the presents, that I had thankfully purchased two weeks earlier. I cry silently as I watch my kids, and hope that they are too wrapped up in all of the excitement to notice.

We were supposed to be in Oregon for Christmas- well that was the plan, originally. "No altitude for you, no extensive travel, and no travel to anywhere that is far from a major medical center," one of my doctors had told me last week. Thank goodness I bought all these presents weeks ago, I think to myself as I watch the kids open their gifts, via my tiny phone screen.

I am learning that gratitude can often taste bittersweet, just like the shiny foil wrapped truffle that my nurse brings to me, and sets gently on my hospital bedside table.

I smile at my nurse, grateful for her kindness. I wipe the tears from my eyes, and smile at my youngest daughter through my tiny phone screen, as she holds up her doll for me to see, chattering brightly about all of her Christmas gifts.

Crappy holidays. And, a very merry Christmas, indeed.

Saturday, December 24, 2016

Loose Change and Oven Mitts

My right hand is still a disaster, ever since the stroke.

It's weird- I can still move the fingers, clearly, as I'm still typing. I just can't feel the fingers- specifically, my thumb, my index finger, and most of my middle finger on my right hand. 

I keep shaking my hand, thinking it has fallen asleep- maybe I just need to get the blood moving, and it will wake up. Nothing yet. The hand has been sleeping for twelve days.

Writing keeps me sane, but the typing part of the project is making me insane. Perhaps it is time to research a voice transcription program?

Imagine- I know the word I want to write, and I know how to spell it. My fingers strike the correct keys, but not with the correct pressure, because I can't feel the pads of my fingers. Almost every word has to be deleted and retyped, as I miss striking half of the letters in each word.

For example, just from the word "not", I might only get the "t" out of it. 

Delete, strike, miss, retype, retype, retype.

This whole thing is an exercise in extreme patience, which is not one of my God-given virtues, as anyone who knows me well can attest.

Delete, delete, strike, miss, retype.

My neurologist asks me if I want to do occupational therapy. "I have no idea," I reply helpfully. "Isn't that kind of your call?"

Truth serum. All of these seizure medications have obliterated the last pretend vestiges of any sort of filtering function. I am now a perpetual smart ass. More than usual.

The nice doctor tells me that he doesn't know if there's any point in pursuing occupational therapy, since we are still waiting for brain swelling to recede, and for blood to reabsorb. That, and the fact that my hand still moves- I just can't feel it. The deficit is sensory.

"I'd like you to practice your pincer grasp and dexterity with coins," he tells me. "You know, just use loose change."

"I'm not following," I reply. I am tired and overwhelmed, and I know I've mentioned this too many times- I am very medicated.

"Start with quarters," the doctor explains. "Practice picking them up from the table, using just your thumb and index finger. Move up to nickels. The last will be dimes, which will be the most challenging. Just keep practicing."


I keep dropping things. Invented exercises with loose change are the least of my worries. Knives, full blenders, and steaming cups of coffee are much bigger problems. Catastrophes, really.

I read about stroke recovery, and relearning to use the affected limb. One pamphlet suggests putting an oven mitt on the functional hand, to remind you not to use it, and to force you to use the afflicted hand instead. It's called Modified Constraint-Induced Therapy, or mCIT.

I have some choice words for mCIT, and the theoretical oven mitt. 

Although, I get it- I already want to favor my left hand, so I don't keep dropping and spilling everything. The idea is that the function in the afflicted hand will atrophy, if you don't use it. I am supposed to keep using this sleeping right hand, even though it continues to make more work for me, and infinitely more messes.

In this current state- I am messier than any of my three kids. Truly.

My dog, on the other hand, seems to be a huge fan of mCIT, since it vastly increases his chances of table scraps. I have taken to crouching over my dinner, reminiscent of a caricature of a caveman, hovering with my fork and my face just inches from the plate, hoping that I will stop spilling just everywhere. The dog is still hopeful.

So- today I sit, with my loose change, and my laptop. Practicing. I pretend that striking the computer keys is also useful, which it probably is. At least I am continuing to use the right hand in some sort of productive manner.

I had asked the doctor about playing the piano as well- which he encourages. I have the same problem that I do with the computer keys though- missing notes. Only I can't retype, when playing the piano.

The music is just not the same.

Deleting in music changes chord structure. Which changes everything.

I've been practicing with the quarters. It's so hard to pick up a thin coin from a table, if you can't feel the coin in the first place.

But, I can even sort of pick up the nickels, if I carefully scoop the coin onto my thumb with the side of my index finger...which of course is cheating, and isn't the point of the exercise. Adaptation, however, is an impressive and useful skill.

I have a lot more respect for stroke survivors, these days. I had no idea- and this is just one sleeping hand.

It was just one stroke. I am still mad that I had a stroke. I hope my hand comes back.

Delete. Strike. Miss.

Dimes are a total loss for now. I'm going to keep practicing.

Strength for the journey.

Friday, December 23, 2016


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.

Wednesday, December 21, 2016

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.