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    Rachel Gloger

    Still Feeling Anxious After Waking Up From Brain Surgery for Cavernoma

    Well, the best news of all – I made it, and I am still here. It was never doubted by my skillful neuro team that I wouldn’t make it. Call me a cynic, but it is one of the scariest things I’ve ever done, this brain surgery. Twice. Waking up was always the first question. And second, how would I be upon waking up? Who would I be? Would I still be me? The brain is a tender and responsible organ. My prayers were generally pretty simple, however: please let me wake up and please let me not be too drastically altered – as in my humor, my personality, my me-ness. So much unknown, which for me, equates to fear. “I’m just so happy you’re alive,” my husband says to me, a few days after surgery. Which of course made me break down into heaving, grateful sobs. Me, too. I am so happy to be alive. It kind of sums everything up, profoundly and simply. Today I am 11 days out from my second craniotomy, my second cavernoma resection in 10 small months. The trauma is fresh and ever-present, with medications every four hours and facial numbness and a right hand that still won’t wake up and still taking my blood pressure every morning and night to stay in my neurosurgeon’s parameters, to try and prevent any more brain bleeds. And the incision. I am still getting over my fear of showering, and cleaning it twice a day is wild and surreal. I’m still afraid to sleep on the left side of my head. One of my children lovingly refers to me as “zombie mommy,” which makes me laugh and feel sad at the same time. Grief and joy continue to overlap in this many-layered healing process. I am hopeful that I’ll feel a little more relaxed at my follow-up appointment, my first since leaving the hospital, in four more days. It’s always a relief to see my surgeon and get the “all-clear,” so to speak, and finally get these scary, spiny, black spider-leg sutures removed from my head. I think I will feel better knowing that my skin has knitted itself back together, that I can finally wash the rest of the blood out of my hair and that we are no longer watching for signs of infection or fevers or something catastrophic at the incision site. As you can tell, waking up from surgery was not the end of my fears. The first two weeks, until the follow-up appointment, might be even harder. For the first couple of days after the surgery, I kept having recurring nightmares that I hadn’t had the surgery yet. My dreams were full of anxiety and waiting and anticipation, and I would be awakened by the nurse for my vitals or blood draws or oxygen levels or medications, and my hand would automatically fly to the large piece of gauze taped to the left side of my head, and I would realize: I already did it. The surgery is over. The nurse would smile at me in the dark and affix the blood pressure cuff to my arm, amidst the tangle of the heart monitor leads and the PICC line and the IV. And I would close my eyes and breathe deeply, ever the straight-A student, trying to breathe relaxation into my pounding heart to get that blood pressure down, while still feeling very entrenched and deep in the anxiety from the nightmares. A silent tear slides down my cheek. This is hard. Even the second time around, even with the known. It is so hard and scary still. And you must know, nurses, the ultimate heroes and caregivers and loving humans that they are, never miss a thing. That tiny tear never went unnoticed. “Everything OK?” they might ask. “How’s your pain level?” I’m embarrassed. It’s 4 a.m., or 8 a.m., or any time of day or night. It was just a dream. I kind of want to be left alone and soldier through my anxiety and try to sleep. What is wrong with me? I’ve done this before. Instead, I answer honestly. We’ll blame the seizure medication, which I enduringly refer to as truth serum. I spill all things on this medication, which is well-documented by my friends and family from past bouts with these medications. “I’m having nightmares,” I venture, hesitantly. “I keep dreaming that I haven’t had the surgery yet, and then I wake up and realize I already did the thing, it’s done already. I just can’t shake the anxiety.” My nurse looks at me quietly, knowingly. She gently removes the blood pressure cuff. She doesn’t offer me a sleeping medication and she doesn’t offer to call the doctor on-call to see about adding an anti-anxiety medication to my already enormous list of medications. Instead, she bends down slowly and gives me a long, loving hug. This is my undoing. Tears and words pour out of me in a torrential flood, on the edge of my hospital bed, in the dark. My husband is at home with our three children, asleep. I miss him desperately, and know my nighttime anxiety would be so helped by his presence. Just having him near me helps me sleep deeper and feel safe. But here I sit, night after night, alone with my fear and the nightmares I can’t control. And this loving nurse reaches across my bed and enfolds me in a silent hug, and I am completely vulnerable and alone and undone. I sob in her arms, breathlessly. Sweet release. I have learned over the years that I must ride these huge tides of anxiety or anger or fear and truly feel the emotions deeply in order to move through them toward a solution or gratitude or courage or joy. This hug from a complete stranger, from nurse to patient, is my unraveling and the greatest medicine during my seemingly eternal hospital stay. The kind nurse silently and knowingly hands me a box of tissues. I blow my nose, and she talks softly and sweetly to me. We make a plan, and I give voice to my anxiety and the nightmares. And suddenly, maybe it all doesn’t feel quite as big – just a bad dream. She gives me another strong hug then quietly slips away, off to attend to her other patients. I roll to my good side, the one without the large swathe of gauze, sigh deeply and fall into my first dreamless sleep. The nightmares have faded since leaving the hospital. The nights, and sometimes the days, are still long and hard, especially alone, recovering quietly away from my husband and children. There are too many hours alone with my fears and thoughts, worrying about the incision and healing and still processing all of the trauma from three weeks in the hospital and emergency brain surgery. My alarm still chimes every four hours for pain medications I am able to manage on my own since I continue to sleep alone, by choice – I fear my husband rolling over and accidentally hitting me in the head in his sleep. I suppose I could sleep with a helmet. I do miss him. But frequently I also choose to think of how far I’ve come, even in 11 short days. The fear is real. Yet so are my strength and gratitude and joy. Two sides of the same coin – heads or tails? – both real and authentic and needing to be noticed. I am so happy to be alive. I am so thankful to be walking and talking, to kiss my husband, to hug my sweet children. I am so grateful that the nightmares have ended, even if my waking fears have not. I have done this before – and I remember, on my good days, that the fears are magnified and all-consuming now, but they will fade over time with more milestones reached and continued progress and busyness and fuller days and nights. I am out of the hospital now, for one full week. Now my phone chimes an alarm to wake me at 4 a.m. for my pain medication, instead of a nurse’s gentle touch. I continue to take my own vitals, just twice a day, with a blood pressure cuff my mother purchased at a local pharmacy. And there in the darkness, in my small moments of courage and gratitude, I sigh deeply and am grateful to be alive, and for soft sheets, freedom from wires and cords and perpetual cuffs and the end of the nightmares. For me, courage can mean the smallest of observations, a shift in perception, a tiny step toward gratitude. How grateful I am for the bigger picture – to be alive. And how grateful I am to sometimes look my fear straight in the eye, for 4 a.m. chimes, for the memory of a nurse’s love and for the small courage that sometimes comes softly in the deepest and darkest of nights – often in the most unexpected of ways. Strength for the journey. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

    Rachel Gloger

    How I Face My Fears Before Brain Surgery on Cavernoma

    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 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 getting daily glimpses of the 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 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 hemorrhagic strokes. Seizure medications. More hospitalizations. Immediate pending surgery – the 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 12:04 a.m. 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; they 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 OK?” 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 from one to 10?” My head pain is a five. 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 12:30 a.m. and you’ll have a blood draw at 4:30 a.m.” 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 OK, I say to myself, so very quietly. I don’t really trust it at all. I am testing it out. I will be OK. Again. I will be fine. I repeat this to myself, stronger, at least 20 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 there is a solution to this problem. I am choosing to fix a problem. I am safe. I am loved. I will be OK. 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, healthy and OK. For a time. I have to feel those big fears. I cannot simply pretend this isn’t scary and there aren’t 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 OK. 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 OK. I am choosing to be in the river and flow. Strength for the journey. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

    Rachel Gloger

    The Tattoo I May Surprise My Brain Surgeon With During My Craniotomy

    My friend and I were joking yesterday about tattoos. For some reason, it felt really important to get a tattoo before my last brain surgery. Something 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 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 for 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 brain hemorrhage and the February 2016 surgery was too fast. I mentioned the idea of a tattoo a few times to the medical folks preparing me for surgery, and they collectively cautioned 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 disheartening. 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 sense of control that I was originally seeking. I suppose I got my wish for that tattoo after all, although in a 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 long, golden curls that went 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 turned out my surgeon had changed course and opted for a minimally invasive supraorbital “eyebrow” craniotomy instead. So now, an eyebrow tattoo and short hair! This was quite a change. And today? After my left frontal lobe cavernoma resection just 10 months ago, 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 blonde, and then dark with red undertones. Still here, still being a little bit brave, just with hair color this time. And then I had this stroke, and the ambulance, and the hospital again, and my neurosurgeon: “You should take this out.” Another potential surgery. Naturally, like any person, my first thought was, “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 were sitting on my couch, talking about the latest plan for my brain. My friend is a planner and a medical professional, and she wanted 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 stopped my friend mid-sentence, and I tossed aside her perfectly logical medical plans, and said: “I think I should get a tattoo.” “Only this time,” I continued, trying to find some humor in this 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 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 everything, the vultures and another brain surgery, for a good five minutes. I even showed her my idea for a writing project, a new blog, with the image of a lovely flock of birds flying away in the top righthand 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 replied. 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 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, coping one day at a time, 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 screws and hardware and all, whether I like it or not. At least the vultures will still make me smile. Follow this journey on Broken Brain, Healing Heart. We want to hear your story. Become a Mighty contributor here .