A 1st person bird’s eye view journey through 7 brain surgeries and back through recovery….
A 1st person bird’s eye view journey through 7 brain surgeries and back through recovery….For me, November 17, 2010 started out pretty much like a normal day. I had no way of knowing that it would end my life as I knew it for quite a while…
I woke up early and went to a chiropractor appointment, stopping by Office Max on the way home to print out several copies of a handout for the talk I was doing that evening at a book signing at a local Borders. The day unfolded just like any other as I gathered my bookmarks, “signed by the author” stickers and other items I’d need for the signing.
I ate a light meal on the way out the door and hugged and kissed my son and husband goodbye, smiling as they wished me luck at the signing. As is my habit, that night I left early and programmed the address into the GPS in my car.
I arrived about 45 minutes early, parking in the parking garage across from the entrance to the Borders Waterfront. I armed my car alarm, noted where I’d parked and walked across the street with my “book signing” bag slung over my shoulder. I quickly stopped at the front counter to ask for Jackie, the manager, to let her know I’d arrived for the signing.
Within minutes Jackie was there, guiding me over to meet the other author who was signing that night. She introduced us, asked me what she could get me to drink and then left us to chat.
I asked the other author about her book, she asked about mine and I enjoyed the easy conversation that usually arises between two people who love the craft of writing.
Let me say now that at this point, I felt absolutely fine. No headache, only that sense of anticipation deep in my gut that I always feel before I speak or do a signing – that anticipation of meeting readers and putting my work “out there.”
I’m not sure how much time passed, probably no more than ten minutes before Jackie returned with an iced chai and set it next to me. I took a few sips and then sucked in a deep breath as the first wave of pain hit in my right temple and fanned out across my skull. Confused, I glanced to my right convinced that someone had come up beside me and had started to chisel and hammer into my right temple.
I heard Jackie speaking to someone else – an employee? Another customer was sick – possibly having a stroke? She called 911 and I let the soft hum of voices wash over me as another wave of pain speared through me and my stomach began to roil. I sat down hard in the nearest chair, and even the thought of taking another sip of chai made my stomach buck. I swallowed hard to keep from throwing up onto the floor in front of me.
My skin turned suddenly clammy and I sucked in deep breaths in between the waves of pain that seemed as if someone was drilling into my skull from the inside out.
When Jackie finished her conversation and hung up the phone, she turned and I motioned to get her attention.
“I’m sorry, something is wrong. I’m feeling like I’m going to throw up and I’ve got a horrible pain in my head – worse than any migraine I’ve ever had. Something is very wrong, but I’m not sure what. I need to call my husband to come and get me.”
I remember her answering, soothing words and soft questions. She handed me a trashcan, and my stomach immediately responded.
I grabbed my cell and hit speed dial for my husband. He answered and I told him I needed him to come and get me. I filled him in, quickly telling him where I’d parked so he could find my car, and that I wasn’t sure what was wrong, but whatever this was it was my new ‘high’ on my personal pain scale and that something was very wrong. He told me to hang in there that he was on his way and everything was going to be fine. I hung up and looked up to find Jackie studying me critically. I remember her telling me I was pale and sweaty and asking if she should call 911.
At first I recoiled at the idea. It has been drilled into me that you only called 911 in an emergency. Was this an emergency? I wasn’t sure, and I was in too much pain to think straight. Luckily she took it out of my hands. She called telling the operator she had called a few minutes ago, but now had an author who was in great pain, clammy, and had just gone pale. She mentioned that I had a history of migraines, but that this pain was off the charts and I let the words wash over me as the next wave of pain hit nearly sending me off the chair and to my knees. I reached out for the trash can again as my stomach bucked in protest and I threw up again, the convulsions of my stomach making the head pain that much worse.
Time spun out having little meaning for me beyond the space in between times I threw up and waves of pain. I was dimly aware of the arrival of the EMT’s, and softly answered their questions about any medications I was taking—none–and that yes I’d had migraines in the past and had a prescription of Immitrex at home from my family doctor, but that I’d never visited a neurologist for them.
I have flashes of memory where they swung my feet up onto a stretcher, and then of being carried. Then I was in a vehicle and it was moving. I swallowed hard against another wave of nausea, calling out to the driver to warn them, but the waves passed quickly, unfortunately followed by another hard wave of pain in my head. I know I moaned and clutched the right side of my head, rocking back and forth lightly to comfort myself.
I’m not sure how much time passed, only marked by large waves of pain and stomach clenching bouts of nausea. But then, finally, I realized we’d stopped moving and I was no longer in the ambulance. My husband’s deep voice sounded beside me and my tight muscles relaxed as I drank in the comfort that welcome sound brought. He was here! He would make sure I was all right. The fear that had begun to set in receded enough for me to think again, Then I remember only snippets – faces, lights, the sharp sting of needles in my arms, the cold touch of fingers encased in gloves against the skin of my face. Impressions, sounds, smells…
Then the pain returned, consuming me. My husband tried to calm me and kept telling me to be still. I realize now that they were trying to do a Cat Scan, but that I wouldn’t hold still. I begged him to make the pain stop. He told me if I held still, they could figure out what was wrong and make the pain stop. Irritated, I replied that if they made the pain stop that I could hold still. I heard his quick huff of breath that told me my snippy comment was no more than he expected me to say and he murmured soothing nonsense words to me telling me that the pain would be gone soon. His deep voice soothed me like little else could, but it didn’t stop the pain and I began lightly rocking to sooth myself again, ignoring the repeated requests to hold still. I may have flipped him off, I don’t remember, but it seems like something I would’ve done at that point so I wouldn’t be surprised.
Here my memory skips forward and I either heard someone say it or I realized that I’m coming out of surgery. I have a moment of panic since I’m not sure what type of surgery I had or had even needed, but I hear my husband’s voice in the next room and the panic recedes. He wouldn’t have let them operate if it wasn’t needed. Then there are a montage of faces leaning over me, people asking me questions or demanding I respond in some way, and lights overhead as I’m moved from one place to another.
I keep expecting pain—after all, surgery means pain, right? But from the sluggishness of my thoughts and the slow response of my body to my mental commands I realize there are still some heavy drugs in my system from the surgery. My first reaction is relief that there is no more pain to bear, and then disorientation as I struggle to fill memories into the great blank block of time left behind in my personal timeline from the surgery and the drugs.
Suddenly my husband is next to me holding my hand. I squeeze his hand in mine, drinking in the comfort that provides and basking in his familiar scent as I battle back fear over what had happened. I try to speak to ask him what happened, but my throat hurts as if I’d yelled too much, and I swallow hard against the discomfort.
He lays a calming hand on my cheek and tells me to relax, that it is all over.
I open my eyes and look up into his face. His expression holds relief, not fear, which calms my own growing panic. He leans close and quickly explains what happened using words that flow past me like AVM, brain bleed and others that didn’t really register at the time. He made sure to tell me that it isn’t genetic so I don’t have to worry about my son having it. He said it is like a birth defect and that 1% of the population has it. He mentions brain surgery and I study his face, expecting him to crack a smile at any moment and tell me he’s kidding.
There was no way I’d just had brain surgery…was there?
Then I was moving—possibly in a wheel chair or even just in a rolling hospital bed? Lights flash by overhead and the scenery changes on either side of me. I’m out of a hallway and in some type of foyer. I glance to the right where there are three figures who seem out of place in a hospital. All three are dressed in black jeans and denim shirts and have large, round skeletal heads that remind me of bone tumbleweeds.
I have a quick thought of “damn, those are some really good drugs they’re giving me, ” before one of the figures winked at me. I looked closer look and realized they had elongated canines – i.e. vampire teeth. The spurt of unease that had started to slip through me dissolved as I realized I recognized these figures.
The first was my brother who had passed away in 2001. The second was my stepmother who I’d lost just the previous year, and the third was my grandfather who had passed away back in 1989. None of these three would ever harm me, no matter if they now possessed vampire teeth or not.
Thin logic, but hey, the drugs still pumped through my system and my slow moving brain didn’t cry foul at my thin logic, so I went with it . :)
When I become aware again, I was in a hospital room on a hospital bed. As if summoned by my eyes fluttering open, my door opened and a nurse entered.
Our gazes met and she flashed me an encouraging smile. “How are you feeling?”
I take a moment to evaluate before answering. “So hot, so thirsty. And I have to get up and go pee.” I winced as only a raspy whisper emerged from my sore throat. I tried to clear my throat and winced against the sudden flash of discomfort.
“You had a ventilator tube down your throat for quite a while, honey, so your vocal chords are swollen and irritated. Keep trying and your voice will get better.
“And you have a catheter in, so go ahead and pee when you feel you need to.”
A quick moment of concentration centered around the discomfort of the catheter confirmed her words.
Damn, but I hated catheters! When I’d been admitted to the hospital for emergency gall bladder surgery just after my son was born, I’d left the hospital with a string of urinary track infections because of catheters. I wasn’t a fan.
My other discomfort came back reminding me how badly I wanted a drink. “Thirsty, so thirsty.”
“We need to clear you for ice chips or thin liquids, honey. Can you cough for me and clear your throat? If the liquid goes down the wrong way and you aren’t able to get it out, it will sit in your lungs and give you pneumonia. You don’t want that do you?”
“I bit back the sarcastic comment that sprang to mind. “Is there anyone who would answer yes to this question?” But I obediently cough and clear my throat, ignoring the pain as she praises my efforts.
She set a cup in front of me and told me to only take a small sip.
“What is it? I push out in a painful, raspy whisper.
She helps me sit up and I look down at the cup. A feathery web of something shiny sits just on top of the liquid. “What’s that?” I point at the water and touch a fingertip to the clear froth floating on top.
“It’s thickened water, honey. If it goes down the wrong way, it’s easier for you to clear out thickened liquids.”
I wasn’t convinced, but I was still thirsty so I reached out until I was able to close my fingers around the small plastic cup. I lifted the cup to my lips and took a small sip. Cool water hit my dry tongue an instant before a glob of a slimy substance triggered my gag reflex. I coughed and the nurse scolded me to be careful about swallowing, but I hadn’t swallowed anything yet. I concentrated and moved the tiny sip of water back toward my throat. I tried to swallow, but my throat responded slowly as if it had forgotten how to do this. I winced as pain shot down my throat and the sip of water went down the wrong way.
I coughed until it cleared as the nurse patted me on the back and encouraged me to continue to clear my throat to get all of the water out.
I cleared my throat again, the vibration of my vocal chords awkward and uncomfortable.
“Good, very good. Here’s a little ice.”
I opened my mouth and she slipped a spoon with some ice chips on it between my lips.
“Don’t chew, just let it melt on your tongue.”
The next thing I remember is sitting up. I’m not sure where in the hospital I was, but I was no longer in my room, and a different nurse sat to my left. I smelled food so we may have been in the dining room where the patients gathered to eat and socialize. I turned to face the nurse, glad to note the absence of any pain. “What’s the date today?”
There was a slight pause before she answered, “December 14th, honey.”
My pulse quickened. I’d lost a few weeks? “It’s my birthday today.”
A male voice to my right said, “No, it’s not. You’re just not remembering right because of all the meds and surgeries.
“It is my birthday,” I insisted to the man who I now realize was one of the aides.
“Check her wrist band,” came the voice of the nurse.
The man lifted my wrist and the gentle bite and slide of the plastic strips against my skin told me he was searching for the information.
“She’s right. It is her birthday.”
I bit back a scathing comment at his condescending tone.
“Do you remember how old you are today, honey?” This from the nurse.
The answer popped immediately into my mind and I winced even as I confirmed with my gut that it was correct. When had I gotten this old?? “I’m forty-two today.”
I waited for them to tell me I was wrong or recheck my wristband again, but nothing happened.
“Happy birthday, they finally said in near unison.”
“Not exactly how I’d planned to spend my birthday, I plan to fire my travel agent.”
I winced as some of my pent up snark escaped. After all, it wasn’t their fault I was here.
They both laughed, and relief slid through me that I hadn’t offended them with my sarcasm.
The nurse lightly touched my arm and I turned to look at her. “Do you remember your name?”
“Tina Marie Gerow”
“Who is the President?”
“Obama,” I answered without thinking.
“Do you know where you are?”
“Scottsdale Healthcare Osborn,” I remembered my husband saying. I suddenly wondered where he was, and resisted the urge to interrupt and ask.
“Do you know what kind of a place this is?”
“Do you know why you’re here? Do you remember what happened?”
“I was at a book signing, I began, and then told her what I remembered as she smiled and nodded.
“You look like you have a question, honey.”
“Do you know where my husband is?”
She nodded and smiled again. “He left for work about a half an hour ago. He said he’d be back around four this afternoon.
Warmth spread through my chest and expanded. He was here and I missed him?” Moisture filled my eyes and blurred my vision. I blinked to clear my vision and keep the tears from falling.
“He’s here every day, honey. Usually with your son and your Dad.”
At the mention of my son, Darian, my tear ducts went into overdrive and a few tears escaped to slide down my cheeks. He was only sixteen. How scary it must have been for him to watch me go through all this. A huge unseen fist squeezed my heart and an overwhelming urge to wrap my arms around my son and reassure him that I was all right filled me.
It took a minute for me to register that she’d mentioned my Dad as well.
“My Dad?” More hot tears slid down my cheeks to fall against my arms and the aide pressed a wad of tissues into my hand.
“Yes, your Dad.”
“But he lives in Ohio and this happened nearly a month ago.”
The nurse smiled and nodded again. “It’s great to have supportive parents. And you’ve got an entire family of support.”
The aide cleared his throat and I turned to look at him.
“Do you remember your profession?”
I smiled as the answers came readily to mind. “I’m an author, and a part time Starbucks barista.”
The aide’s expression turned dubious. “Is she hallucinating?”
His gaze was on the nurse and not me so I didn’t bother to answer even though I chafed at his condescending tone. His fingers closed around my wrist.
I snorted. “That’s not going to be on there.”
“She really is an author,” the nurse surprised me by saying. “We went to her website and read some excerpts.” She laughed. “Talk about steamy!”
The aide laughed. “Really? You’ll have to show me when we get downstairs.”
The aide tapped my hand and I turned to look at him.
“You’re also a barista at Starbucks?”
“Okay, how do you make a caramel macchiato?”
“Hot or cold, and what size?”
“Does it make a difference?”
I nodded, irritated with both his questions and his still-condescending tone.
I smiled as the familiar recipe came easily to me. After all, in my two years working at Starbucks, I’m sure I’d made thousands of them. “Four pumps of vanilla in the bottom of a Venti cup,” I began.
“Wait, don’t Venti hot drinks get five pumps of syrup?”
“Normally, but for caramel macchiatos, each size gets one pump less.”
He studied me critically and I pulled my wrist away before he could try to check the information on my wristband. However, I was pretty sure he was going to check my answer at the earliest opportunity.
“Then you steam the milk and pour it on top with some good foam to float the shots on. Two espresso shots go on top and then some drizzle of caramel sauce in a zig zag pattern.”
“It only gets two shots? I thought it got three.”
“That’s in the Iced Venti.”
He nodded without any disbelief or condescension in his expression this time.
I held out my arm. “You want to check my wrist band?”
He chuckled and shook his head.
Maybe there was hope for him yet.
Suddenly uncomfortable and very thirsty, I realized how dry and pasty my mouth was. I bit my tongue to try to create some saliva, but to no avail. “So hot, so thirsty.”
The nurse laid a gentle hand on my arm “Would you like to try some more water, honey?”
At the thought of more slimy water inside my mouth I gagged and coughed. “That stuff tastes like drinking someone else’s snot.”
The aide laughed and the nurse clucked her tongue. “Do you remember what I told you about what would happen if it goes down wrong and stays in there?”
I bit my tongue hard against a sarcastic retort, “Yeah, pneumonia”, I remembered. But wouldn’t I end up dying of dehydration first? I glanced down at my arms to confirm that there was no IV giving me liquids.
The next thing I remember, I’m lying in a darkened room, the weak light filtering in through the window enough to illuminate the clock face, but not enough for me to make out much else. From the lumpy mattress, the rock hard pillow and the stiff sheets, I assume I’m in a hospital bed, which makes sense if I’d recently had surgery.
My body aches telling me I’ve been lying in one position for too long. I roll to the right and am caught short as something yanks hard against my left wrist. Pain flares through my wrist and up my arm and I twist my wrist, surprised to find some type of cloth biting into my skin. I reach out with my right hand to explore what has me in its grip, but my right hand is caught short as well. Frustrated, I kick my feet, but the motions of both legs are stopped short as well.
I’m restrained? Disbelief spears through me. After all, I’ve spent my life as a rule follower, what could I have possibly done to warrant being tied hand and foot to a hospital bed?
“You pulled out your feeding tube and slapped a nurse.”
I startle at my husband’s voice. I hadn’t realized he was in the room, or that I’d asked my question out loud. “I did what?”
“To be fair, she was pestering you trying to get a response. After the surgeries, they turned off your sedation every two hours to get you to respond to stimuli. During one of those sessions, you pulled out your feeding tube and slapped a nurse who was bugging you. They learned quickly after that to just reduce the sedation, not turn it off.”
“That would do it,” I murmured to myself as I gently pulled against the restraints, irritation at being punished for something I didn’t even remember doing burning through me. I understood their reasoning, but I didn’t have to like it.
I must’ve dozed off then because when I woke up, my husband was gone, my left wrist throbbed from the run in with the restraints, my bladder screamed that it was overly full and a searing headache galloped over the top and right side of my head. I groped around until my hand closed over the remote for the nurse’s call button. I pressed the button and then set the remote away from me, wriggling to try to find a more comfortable position to lie in with the limitation of the restraints. I glanced up at the clock surprised to realize more than an hour had passed since I’d last looked.
I tried to relax and close my eyes, but the pain in my wrist and my head and the discomfort of my too full bladder made it nearly impossible. I know they said I had a catheter in, but it obviously wasn’t relieving the pressure. Or I’d gotten another “fun” hospital urinary tract infection that made me feel like I had to constantly go. :)
My head throbbed and I glanced up at the clock, surprised to see that forty minutes had passed since I’d pressed the nurse’s call button. I grabbed the remote and pressed the call button several more times wondering if my repeated efforts were just as useless here as they were on an elevator button. I let my eyes slip closed as the throbbing in my head went into overdrive and radiated down my right jaw. I tried to reach up to touch my face, but was stopped short by the restraint.
Frustration and helplessness burned through me and I tried to call out, but only a weak, raspy sound emerged.
Nearly ten full minutes later, fifty minutes after I’d first hit the nurse’s call button, someone finally came to check on me. She was a different nurse than I remembered seeing before and listened to me with a quiet compassion that I appreciated, and I made sure to tell her so before she left. She returned a while later with some meds for my headache and my wrist pain and loosened the restraints, although we were both surprised to find the one on my right wrist totally off. I didn’t remember wriggling out of it, but she told me with a quiet laugh that I probably had. She said the nurses on the floor called me Houdini because I had a knack for wriggling out of well-tied restraints. She also told me she would have my urine tested for a UTI, which might be the cause of my discomfort.
I thanked her for her help and for listening to me. After so many people speaking to me as if I were a small child over the past several days? Weeks? This one woman treating me as if I were a person, and an intelligent adult made all the difference and I made sure she knew how much I appreciated it. She apologized for the long wait to get someone to respond and promised she’d check on me in an hour or so after she did her ‘charting’, which I assumed was the nurse version of paperwork – after all, every job had their own version of paperwork, I knew hers was no different.
The pain receded until I was finally able to sleep and the loosened restraints gave me just enough room to get comfortable in my small environment. When I woke, the nice nurse from the night before was back, smiling down at me and asking if I was ready for something to drink.
My parched mouth confirmed I definitely was and she and I went through the throat clearing and coughing drill until she was satisfied I could get any liquid out that went down the wrong way. Thankfully she brought me a cold Sprite poured over ice, blissfully unthickened, and she helped me sit up and then sip it through a straw.
The cold liquid felt divine going down my abused throat and I vowed to ask for Sprite with extra ice the next time I was thirsty.
“Are you hungry?” We’ve got you on a pureed diet, but some things aren’t so bad that way.” She brought me the menu and I glanced over the offerings doubtfully. French toast and eggs caught my eye. Those might not be too bad, especially with syrup and butter.
She smiled seeming to agree with me. “I’ll put in the order for you. Breakfast should be up in about twenty minutes. I’ll check back in on you soon.
I glanced up to find my husband standing in the doorway. The nurse filled him in on what had happened with the restraints, the pending test for the UTI, the okay for thin liquids and the pureed food before she left.
I filled him in on the feelings of helplessness and the long wait or a nurse to respond, also filling in how wonderful the nurse who had just left had been to me both last night and this morning. He was concerned about the long wait time and understood my frustration, but said that he really liked that nurse too. She had always been really great when he’d spoken to her as well. He said she’d mentioned that I would be moving to a real room soon and had asked him if he’d like to come up and spend the night with me sometime. They could bring in a sleeper bed for him.
Excitement curled inside my chest at the idea and I asked him if he was thinking about it. He said he was considering it on a night when my Dad and Darian didn’t need him at home.
He did come up and spend a night and it was wonderful. I could reach out and hold his hand, although I know he spent an uncomfortable night on that horrible chair/bed on the floor beside my bed. I missed my own bed and my own pillow and my aching muscles agreed. My husband promised we’d both go get massages when we got home, and to hang in there.
I was soon transferred to a regular room where the days became a blur of meals, meds and visitors and I began rehab therapy sessions—physical, occupational and speech. I liked all three of my therapists. They were compassionate, made me feel listened to and like a person and not just another patient, and encouraged me toward my goal of “getting back home to my guys.” They always treated me like an intelligent adult and were never condescending or belittling.
A few weeks later one of the therapists asked if I’d like to move to the rehab floor full time where I’d have three hours of therapy a day.
I had already seen the improvements that therapy had brought and knew that the increase in therapy sessions would help me get better than much faster so I gave a quick affirmative and outlined my reasoning which earned a smile and a nod from Simon, my occupational therapist.
The move to the rehab floor was more a change of scenery than anything, but it also brought some unexpected freedoms. They removed the Foley catheter, but I still had to ring for a nurse to help me get up and use the bedside commode or go to the actual bathroom. After a week or so, they cleared my husband to be able to help me up to use the restroom and also to wheel or “walk” me around the floor with my walker after meals. We could also now have patio privileges, which included heading down to the cafeteria as a family if we liked. These new freedoms along with finding more nurses and aides who actually treated me like a person, and my increased mobility from therapy did wonders for my morale and each of the three therapists told me how quickly I was improving at each session. I was excited by the quick progress and whenever I was asked what my goals were, I was reiterate that I wanted to “get home to my guys.” I had several visitors over the next few weeks, writer friends, family and other friends, as well as a few phone calls—all of which raised my morale and my commitment to get better and back to my previous self.
One day my occupational therapist came to get me just after breakfast and as we did often in his sessions, we reviewed my goal—to get home to my guys—and he said he thought I was ready, and asked me how I felt about going home.
This was everything I’d been working for, so I was excited by the prospect. My husband worked during the day, but my Dad was still in town and came to visit daily. He’s retired and willing to stay with us for as long as I need him, so I wouldn’t be alone. My son is home in the evenings after school and very willing to help also.
Simon told me he’d talk to the doctors and other therapists and see what they thought and get back to me.
I thanked him, but was afraid to get my hopes and have them dashed if it didn’t happen, so instead I tried to take a nap.
Just after lunch I glanced toward the doorway to find my good friend and fellow writer Cheyenne McCray smiling in at me. She came inside and we visited for quite a while before Simon walked past my door again and said, “How about Thursday to go home? We could do the family meeting on Wednesday with the family training right after that?”
“Thursday is great for me,” I called out as excitement and anticipation curled inside my gut. I asked Cheyenne if I’d heard him correctly. She confirmed I had and I grabbed the phone to call my husband who sounded just as excited as I felt.
Just like any other highly anticipated event, Thursday took forever to arrive, but it eventually did.
My wonderful husband took me to Olive Garden for my first “real” food outside of the hospital and even though nothing had tasted quite right since the surgery – Olive Garden lasagna was amazing!
I’ve been home for two weeks now, and I’m doing Outpatient therapy a few times a week. I’m off the walker and onto a cane and I’m getting stronger every day. I’ve lost a little peripheral vision on the left side, but don’t really have any other functional gaps other than that. I’m very blessed and I’m thankful every day. Looking back is still jarring. I missed Thanksgiving, my birthday, my husband’s birthday, Christmas, and New Years, and I often miss my “old self” and my “old abilities”, but I’m determined to get back there and continue to work hard in therapy.
I took back boxes of signed books to the ICU nurses an the rehab nurses for being so great to me and will definitely go back and visit from time to time.
I’m so thankful for those men and women who were patient with me, compassionate and helped me on the road to recovery. Portia, Christine, Kristin, Matt, Lisa, Manuel and many more. They made a very scary and horrible situation better and I’ll always be grateful to them.