My eyes faded in and out of view as I slowly woke up not expecting to be an extra on the set of E.R., but my peaceful send off into sleep was transposed into a chaotic blur of noises (both human and machine) placed on a highway in the middle of a hospital. The Intensive Care Unit is one of the most aptly named wings of the hospital. One might think it would be the Emergency Room, but I have waited in the Emergency Room long enough to know that my concerns never accounted to an emergency in the eyes of the front desk person. Broken arm, “please have a seat”; eye laceration, “please have a seat”; seizure, “please have a seat”. It makes me wonder what an emergency looks like, and I for one am happy to not be defined as a person whom needed treatment in an emergency fashion. While I never had an “emergency” in the eyes of the ER admissions team, I had never been in the ICU either.
ICU is well, rather Intense. As my eyes tried to catch up with my body rolling through the winding halls filled with noises, my ears were quite aware of the situation as they scanned the space of despair. My body propped up in bed as if I fell asleep in a Lazy Boy; I was eventually wheeled into a shared patient room with only a thin, partially closed curtain separating me from my roommate. There was a small TV high up on the wall blaring so loud that I felt like it was yelling at me. I could not see the face of my roommate, but I could hear his subtle sounds and moans that seemed to match those of the blaring TV. I was trying to orient myself, but this environment was so foreign. I went from the only patient in a room filled with doctors to a shared room filled with sounds. The air was more desperate and my senses were filling with anxiety.
As my mind starting to wander down a path of fear, Dr. T walked into the room. He stood there smiling and holding a cup of green tea with a packet of honey. My mood started to shift and the clouds of despair began to dissipate under the sun of a kind act. We would talk for a moment and then he was gone….onto the next patient, but he made me feel like I was the only person that existed. These are the super powers of doctors. Yes, their medical skills are of prime importance, but their human spirit is what comforts and soothes the minds and souls of patients.
While Dr. T was leaving, all hell was breaking loose with my roommate. The groans grew louder and I could feel my own anxieties creeping back in. Where is my mom and Sarah?! The TV felt like it was growing louder and louder and the view of my roommate from the partially closed curtain was more and more distressing. And just as my last sense of calm was about to escape my body, mind and soul, my mom and Sarah arrived in time accompanied by a pizza and roasted olives from 2 Amys. The sight of them again lifted my spirits and gave me positive things to focus on. I was fragile…more than I knew. I needed an advocate, I needed someone to take charge, someone to assess the situation and know what to do. My superheroes were here! They wore no capes and there was no theatrical-themed entrance music when they arrived, but I could feel the winds of change. The first crushing news was the nurse coming in to tell me and my superheroes that I was only to have hospital food in the ICU. Now, I’m not sure about you, but if you just had 6 hours of brain surgery and all that comes with it and one of your favorite foods was within arms’ reach and someone tells you that you can’t eat it, your soul either dies a little or you go absolutely ballistic and shovel all the food in your mouth at once. I chose a path somewhere down the middle. I got over the pizza quickly enough, but I was growing less and less patient with the nurse.
Whereas Dr. T lifted me, this nurse seemed like she was hell bent on showing me how brutal life can be in the ICU (or hospital in general) when one does not have an advocate. There were several moments prior to my mom and Sarah arriving where she was rude to a point where it seemed like she was mad that I existed. I go out of my way to be kind to others, but in that instance, on that afternoon, I could do no right.
My roommate was now making sounds that could only be that of a dying person. Alarms were sounding and nurses and doctors rushed into the room to attend to him. The still partially opened curtain was thrown fully closed to spare my roommate and me. I had people pushing against my bed as if they were falling through a razor thin membrane. I felt like I was flying long distance in the middle seat on a value airline. The sounds of my roommate’s anguish and the barking orders and calm yet frenetic dialogues amongst the hospital staff permeated my space and fear was knocking on my door. My superheroes sprung into action and not only addressed the nurse, but the entire situation and my world returned to its normal axis and rotation. My mom, a nurse and former ER nurse of 40+ years was now taking charge. I was her son, not a patient, and someway or another, her and Sarah were going to make sure that the ICU knew that. I was not coming here to die, I was coming here to recover, but the reality is we are all trying to do just that.
The other side of the curtain eventually went quiet and I couldn’t help to feel a huge sense of remorse. My roommate was gone. It would be mere moments in the universe before I would have a new roommate. It was a reminder that I am lucky in this world and that I could have been on the other side of a curtain.
Dr. K came into the room with the surgery team. I was overwhelmed with emotion and thanked them before they could even get a word out. Dr. K went on to tell me that he felt the surgery went very well. There was a young doctor behind him constantly moving his head to peer around the heads of his colleagues as if the Macy’s Day parade was passing in front of him. Dr. K noticed this and said, “don’t mind him, he is just admiring his work.” The peering doctor turned out to be the plastic surgeon that sewed my head up. It too was a good reminder that just because one is good at their job, it doesn’t disqualify them as being an asshole. In a weaker moment, I would have wrapped myself in the cloak of being a patient, but I knew assholes prior to surgery so it was nice to know that I still had the ability to recognize one when I see one.
Dr. K continued that while the surgery went well, he was not able to remove the entire tumor. I knew that would be a possibility, but never focused on it as a reality. I must have looked shocked and I could feel my eyes welling with tears as he softly said, “this is a good thing.” It turned out that we had vastly different ideas of “a good thing.” We chatted more about it and then he told me that he would be referring me to oncology to start the early process of radiation and chemotherapy. I had yet to process the fact that I still have a part of my neighbor in my head and now I was being told that I would see yet another doctor to undergo chemotherapy and radiation. Now, I chuckle to my inner-self, because at this point my mind was melting so fast that there would be no use for additional treatment.
I saw the shape and being of Dr. K, but his words faded as if we entered outer space and only silence was present in that moment. I could not hear or process what was being said and the weight of it all felt as if it was a hammer on my head both internally and externally. Dr. K’s voice came back to Earth and we wrapped up our conversation with a post-surgery appointment in his office later that week, but what I experienced was…
”Welcome to the drive-thru, what can I get for you?”
“Uh, thanks, I will have the number 4 special, but could I modify it so that I get no pizza, no roasted olives, a stressed out-angry nurse, a blaring TV, a partial resection, some radiation and a touch of chemotherapy, an apparently “beautiful scar”, and I would like to wash that down with some hospital food.”
“Anything else, sir?”
“Uh yes, one more thing, thank you for this day because I am alive and I can wiggle my fingers and toes.”
“Pull forward, please”
…Dr. K made his way out of the room and I looked at the faces of my two superhero ladies and even they couldn’t hide from the news laced in kryptonite. I was hurting and was dosed with more pain meds and I lied there with sleepy eyes and a running mind. While the pain and physical symptoms slowly succumbed, I recall needing to pee. I hadn’t peed since 5AM (or so I thought) that morning and all of the sudden I had an urge that revealed another twist in my story.
I slowly moved my hand under the covers and felt a slight burning sensation sharper than I had ever felt before. Prior, I did not pay much mind, because I was swimming to shore in ten-foot waves, but once I made contact with my pee handle, my eyes must have opened to the size of baseballs. Sarah, calmly said, “baby don’t touch that.” I sleepily gave another little tug and again Sarah, now demanding, that I not touch it. “Archie, you have a catheter in.” My first thought was ‘when the hell did that happen?’ and my second was ‘what else did they do to me when I was under anesthesia?’ Not totally working with my full mental faculties, I told my mom and Sarah that I had to go pee, to which they responded, “just go.” There is nothing like having your girlfriend and mom tell you to stop playing with you penis and “just go.” That will be a memory I have for life, and I truly hope it is a one-time experience. If you have had the joy of having a catheter you know that it is an odd, uncomfortable, and slightly painful feeling to have a tube shoved into a hole that clearly has an “exit only” sign on it. However, it does have its benefits when not being able to stand. I was not looking forward to having to use the bedpan, so with a smile of a five year old that knows better, I just started peeing and yes, it was awesome.
Through the art of love, knowledge and persistence, my mom and Sarah worked on the Charge Nurse with such effect that I eventually was given a single room that was vacant across the hall. We should all be so lucky. If not for them, I would have submitted to the unhappy verbal abuse of the first nurse let alone be moved into my own room for the night and remaining stay. I lay on a surgery table in the hands of skilled professionals, but I recovered because of love, support and positive thought…and let’s add a dash of humor.
My new room was without a blaring TV and a roommate, so I knew that whatever the rest of this crazy day threw at me, I would not only survive, but thrive. Little did I know that the rest of the evening was a test of my belief in positive thought. My mom and Sarah were not allowed to stay the night so they had to leave for the evening, but promised to be there as early as allowed in the morning. I started to fall into a narcotic induced sleep trying to put the challenges of the day in the rear view mirror, but just as my eye lids closed and my breathing slowed, the door opened, lights were flicked on and my serene world was met with the constant chaos in the ICU. My new nurse standing there before me was checking my vitals as if it were time to rise and shine. I had no clue what time it was and it felt like only minutes had past since I last saw the nurse. We spoke for a minute and as quickly as she entered the room, she left like the wind leaving me to wonder if this was all a dream.
I looked around in the darkness of the room. There were blinking lights everywhere flashing in different colors and at different intervals. I compared the patterns in an effort to fall back asleep and eventually drifted off. Again, the door opened, the lights were turned on and yet again, my nurse stood next to my bedside checking my vitals and making sure I was still alive and kicking. I asked her how long I had been sleeping and she explained that it could not have been more than an hour as that was the time of her last visit to my bedside. In a naïve manner, I told her that she did not need to check on me so often on my account. It was then that I learned that this hourly pattern was protocol. Another fun fact about the ICU is that a patient is not there to recover; rather, a patient is there due to some need of Intensive Care and therefore, a patient received Intensive Care whether the patient wants it or not. I kindly pleaded my case that sleep would help me heal and recover, but as true as that might have been I was assured that I would be seeing my nurse in another hour.
I laid there, propped in my fancy bed that was not designed for comfort and I stared at the ceiling tiles through the darkness. I again focused on the blinking lights and faded to sleep. It was obviously not a restful sleep. It was the type of sleep where you heard your alarm go off and you hit snooze, yet you have come so accustomed to the length of the snooze that your anxiety rises with every minute knowing that the alarm will soon sound again. Drifting off, yet holding on to the reality that lies just beyond your pillow. The door opened, the lights turned on, but this time my nurse was accompanied by a colleague whom stood in the doorway. My nurse took the patterned vitals and then the colleague walked over and stepped on the brake pedals of my bed. The click of the brake pedals being released matched my question, “what’s happening?” My nurse informed me that I was to take a post-surgery MRI.
I was scheduled for surgery at 5:30AM and now it is the middle of the night. A mere 20 hours after my surgery, I was scheduled for an MRI, which I guarantee you was not in the “important things to know” handbook. I was in pain, swollen, disoriented, exhausted. I knew then I had no choice in this matter, but if someone gave me a heads up, what was left of my mind would not have been scrambled by anxiety and fear. My bed started to move as I was still propped up enough to see the hallway as I emerged from my cave-like abode. The view was like leaving a casino in daytime. The ceiling lights acted like a thousand suns and my eyes struggled to adjust as my bed picked up speed. Images came back into view, but slowly and oddly because I was being pushed so fast as if I were a character in Mario Kart. The speed was relentless, but what made it worse is the fact that I was being driven backwards trying to focus on what just zoomed by me as I was racing through the halls. I was in the way back of the station wagon with a NYC taxi driver in control of the wheel. One more turn and I could have sworn that I saw him running in the reflection of a fast moving picture frame. I can’t take it…saliva started to slowly creep from below my tongue, my forehead was perspiring with fresh drops of dew and I knew what was next. “Please stop…please stop…STOP! The light of the hallway mimicked those of the highway lights as they slowly came into view with every slowing revolution. “I have to puke.” He reached down and put a hallway wastebasket next to me on the bed. He almost held a sinister smile, but it was also a weird look of pride. I may never know what that look was, but I like to believe that he did the same race with all his patients and I made it furthest before asking for a chuck bucket. After a brief pause, he put the bed into first gear and brought me to an elevator. We wheeled in and another nurse from another floor on the elevator gave me a smile. I had no clue what I looked like and it was close to the last thing on my mind, but her smile gave me an inkling that I looked more like Dr. Evil than Austin Powers.
We arrived on the MRI floor and I stared at that machine like an old foe. I knew I would win, but I wasn’t sure how many blows I would sustain while instead the belly of the white whale. I was transferred out of my bed and on to the table most likely resembling a puppet as the nurses meticulously navigated my lines and wires along with me. I closed my eyes, drew in deep breaths and readied myself for the noisy overture of the MRI. There is no other way to describe this event, but that it hurt. It hurt everyway. My head already subject to swelling and pain thumped as if being in a night club playing loud bumping house music to the most random beats. There was nothing more that I could do but lay there and endure the sounds echoing through my skull. I felt defeated. I wanted to raise the white flag on this entire day and surrender to my enemy. I felt like a soldier wounded in battle only to be tortured upon capture. And just then, the room went silent, the conveyer started to remove me from the machine of doom and the bright lights came back into view.
I was again transferred to my bed with gentle care and the wheels clicked and my bed started to roll. As we entered the hallway and then the elevator and rounded the corners back to my room I laid there, half broken in mind and body. I had no energy and just wanted to be back in the room where I could try to have my emotions in solitude. After I was rolled back into my room, settled in with the wires and lines, the light went out and the door closed, and I stared at the ceiling with the flashing lights casting light and shadows as I drifted away from my one-hour nap.
The lights turned on like blinds being pulled open on a sunny morning. I awoke to the same routine with my nurse and smiled a small smile thankful that this was just a check in and not another field trip. Soon, my mom and Sarah would be here and while I was beyond exhausted, I counted the minutes to visiting hours. I nodded off for moments here and there, but my body and mind were starting to get used to the hourly pattern helping my anxiety to lessen, but also encouraging my desire to go home.
My mom and Sarah arrived and I instantly felt safer and happier at the sight of their faces. The first day and night in ICU were one of the darkest hours I had throughout this entire ordeal and while learning that I will need to go through radiation and chemotherapy, I did not have time or energy to process that yet. I was taking baby steps in my initial recovery and trying to focus on the now, which was enough. After talking with my mom and Sarah, the nurse came in and encouraged me to try and get out of bed, but before I was to get up, one of the doctors would come in to remove my drain. “Uh, excuse me, where is there a drain and…WHAT?” I soon found out that there was a drain inserted into my skull and brain cavity before the end of my surgery to allow excess blood to be removed from my brain.
It was a flash back to when I first realized I had a catheter in. When the hell did this happen?! I used my left hand as I slowly raised it to the side of my head. My hand was as nervous as I was to find the object protruding from my skull. It felt like a plastic box about the size of a tic-tac container although I usually keep those in my pants pocket not attached to my head. Saliva started trickling in my mouth as the sensation and imagery slowly set in. I looked at my mom and Sarah and they could only stand there with sad smiles of support. The doctor came in and we briefly chatted about what was about to go down. The basic premise was that he would grab hold of the box and wires and would pull the drain line out slowly. He told me that I would feel a slight tug and then probably some pressure and other sensations as the drain was removed. Now if you have ever had stitches removed from anywhere on you body, you might grasp the idea better than those whom have evaded the process.
The doctor started to apply reverse pressure slowly before he gave a small yank of the drain line. I guess it would be akin to pulling a boat anchor from weeds on the shoreline. There is a slight pull, but you feel resistance and jerk the rope just enough to break through the weeds. My brain was the weed bed and when the anchor was freed, it sent thousands of sensations through my head, face, arms, body and legs. An electric plug being pulled from a resistant outlet, my face must have looked like it was rebooting. That sensation was followed by one of pulling thread through a stitch; the doctors held my head and pushed slightly as he was pulling with the other hand. It was as if he was pulling a stubborn and long rooted weed from the ground. The sensation made my eyes and forehead quiver and it seemed that minutes were turning into hours. In reality, it was probably about 10 seconds in total and when it finally left my head the pressure stopped immediately and my head felt freed. I looked at the doctor now standing at my side and I glanced at this drain line. Staring at this line, which was about eight inches long, I was in utter amazement that somehow this was in my head and was now pulled out. The doctor then stitched up the opening and my head when from feeling like and anchor to a light balloon.
The first step of getting up to walk was now complete. The drain line and the other wires made it difficult for me to move around, but now my goal was to take my first steps post-surgery. I slowly positioned myself to the side of the bed and let my feet touch the floor. The sensation of my feet on the floor sent waves of shivers up throughout my body as if it was the first time I had attempted to stand in my life. I didn’t trust my own legs to hold me, but I slowly stood with help from my mom and Sarah. Surging energy and black dots quickly filled my vision as I tried to steady myself against the pressure in my head and lack of use in my legs. My nurse had left the room with the doctor just after the drain removal so my mom and Sarah went from audience members to care givers. It had been about thirty-six hours now since surgery and I never thought about what I may look like.
I stood by myself on shaky knees, but determined to stand, walk and resume the simple motor functions that I took for granted just a couple of days ago. I walked over to the sink where the mirror sat above it and as soon as I glanced at the stranger in the mirror, I realized what I had become. It is an odd thing to look at yourself and not recognize what you see in your own reflection. I had no clue and no one warned me, but for some reason I didn’t think I would look so terribly different. I did. My mouth filled with saliva like a faucet and I started to dry heave violently. The vision of myself was too much and both my mind and body rejected the view. The pain I experienced from dry heaving was the worst pain I have ever had in my life, even to this day. Sarah frantically jumped into the hallway and yelled for a nurse as I swore my head was going to split open in the middle of the room. I was assisted back into bed and my IV was filled with pain meds. I hurt. My head felt like ten thousand explosions and the pressure it applied made me fade in and out of a conscious state. I laid there a broken person, not concerned with anything but the moment I was enduring.
The vision of myself accompanied by my first bout of standing and walking was utterly too much. I had hit rock bottom. As the pain faded and the emotion of the room stabilized I stared at my mom and Sarah with blank eyes. The pain fleeting and the frustration setting in, I tried to do what I do best; I tried to talk my way through it and make sense of it all. Yet, my one remaining power of voice failed me as I tried to grasp at words like sand falling through an open hand. Most words were fine, but I came to the word “statistic.” I told my mom and Sarah that, “I refuse to be a stat…a stati…a stat…statict…” My attempt to say this word was denied by the miscommunication between my brain and tongue. The irony was that I was a statistic. I was part of a small statistic of people who had an open-craniotomy to remove cancer from my brain and now I was starting to better understand what that meant. I was frustrated by my lack of command over my own mind and body. I tried to say the word over and over again, but it did not improve. It was then that I refreshed my memory back prior to the surgery when I told myself that if I wake up and can wiggle my fingers and toes, everything was going to be just fine.
In this moment, I knew I needed to fight for my life, but prior, I only imagined what that would be like. I now knew that I was lucky and with that luck, I needed to do everything in my power to fight to regain my old abilities, but not to be the same person or hold on to that expectation. This was the start of my new normal. A version of my old self, but instead of lamenting on what I had, I was determined to be a better, more updated model…a 2.0 version of me. I had lost some things, but I gained perspective and for that, I will always be thankful.
The day went on and it turned to night as my mom and Sarah were told that visiting hours were done. That night was long, but not because I was checked on every hour, but because I started to believe in myself again. I pushed through the surgery, news of needing radiation and chemotherapy, the damned catheter, the chaos of the ICU, the MRI, the drain removal, the sickness of viewing my own self, and the lack of cognition. I focused on what I had, what I could improve and mostly that I went through all of this and I am still here. Positivity took hold of the reigns as if the Kentucky Derby was the race for my life. I could not give up, I could not be negative…I, was alive.
My nurse came in to make a check and I asked her when I would be able to leave the ICU and go home. She told me that I need to prove to the medical team that I can go home, and the most pressing of these forms of proof was to walk and be able to care for myself. She left me with this challenge and that night, I promised myself that it was my last night in the ICU. Tomorrow, I will stand and then walk out of here, but as I drifted off to a short nap, I kept trying, “Statist…stat…statist…”
Morning had arrived and I was intent on keeping my promise. My catheter was removed and I made a short walk to the toilet and for a second glance at my new normal in the mirror. I laughed as I peed, steadily holding on to the rail in the bathroom. I then looked into the mirror and found myself. I looked so hard into that reflective glass that I saw every stitch on my head, dried blood from the halo screws, the smears of ointments and fluid left on my face and head, but in all that, I saw beauty. I saw life. I saw the opportunity for improvement. I saw myself and it didn’t make me sick; rather, it made me motivated. After all, what is the point of going through all of this to just lie down and die in either physical or spiritual form. We have two choices in this instance and I wasn’t about to analyze this…I gave myself one choice…I gave myself hope.
Visiting hours had not started yet, but I decided to make the first move home. I usually try not to leave my abode looking like a train wreck, but I walked to my door, stared out at the world just beyond and I slowly put one foot in front of the other. I held the rail on the wall as I shuffled by the nurse’s station receiving eyes of worry mixed with smiles of encouragement. I slowly meandered across a connecting hallway with no rail and made my way to a big glass hallway that overlooked the hospital grounds and the river just beyond. The sun rose and I fixed my gaze on this new day for a while. I smiled, let a joyful tear fall from my eye and I turned and walked down the hall. I completed a lap around the ICU coming back to the large windowed hallway not knowing that my mom and Sarah had arrived and were looking for me, as I was not in my room. I looked over my shoulder to see them, smiling and crying at the same time. I had EVERYTHING to live for.
I eventually made my way back to my room. Dr. K came by and gave my performance two thumbs up, which was my ticket to go home. I was still unsteady, but the idea of sleeping in my bed, and truly being allowed to sleep was all I needed. I was finally discharged and I slowly made my rounds at the nurse’s station. These nurses would never leave my mind. The doctor’s may have done the surgery, but these nurses cared for me and helped me to have the faith and confidence to live. There is truly no better gift than that.
We gingerly walked out of the hospital and into a cab. My head wrapped, my face and demeanor looking as if I was leaving a fresh battlefield, but nonetheless, the cab driver sped off like he was on a mission to be the fastest cab driver in DC. My mom and Sarah tried to explain my plight, but the pleas made no difference to the madman, so just as I arrived at the hospital, I left with the same urgency. That night, I was home. My mom, Sarah and Shadow all crammed in like we were three days prior. The only difference this time was I was able to fall asleep as the watchful eyes of Sarah stared at my every breadth in hopes for a better morning.
When I awoke the next morning, I was encouraged to go on a walk to keep my blood moving and to get some fresh air. Sarah stayed behind to get some rest and to work on schoolwork she had missed taking care of me. My mom and I ventured into the brisk November air and just started walking and talking. Before I knew it, we were at the zoo, which was three-quarters of a mile from my apartment. I loved the National Zoo. It was free and I would often run through it only stopping to see the silver back gorilla whom I considered a friend. We ventured through the zoo and I was able to see my friend and I shared a smile with him and drew strength from his enormous energy. My mom and I sat on a bench as we talked about life. I don’t recall what we said, but I still harness that day when I find myself at my worst. What does a mom do to help her child in this situation? Well, she did the only thing she could…she just loved the hell out of me. We walked back to my apartment, two and a half miles later and my new journey had begun.
The next day, my mom flew back to reality and Sarah stuck around to celebrate Thanksgiving with me. We attempted to have a normal holiday and make food in my easy bake sized kitchen. It was an absolute disaster in terms of culinary delights, but there was never a more thankful Thanksgiving of my life. Sarah flew home the next day to celebrate the holiday with her family as they were kind enough to delay a day and celebrate with her, and I had my first moments of solitude.
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