Prologue Part II:
“How brain cancer showed me who the REAL heroes in my life are.”
I believe that my experience in the hospital is best defined by both the things that I absolutely hated about it, and the things that I absolutely appreciated about it (most notably all of the heroic people that I had the privilege of coming into contact with). Let’s get the “bad” stuff out of the way first, though. Probably the single biggest thing that I hated about my hospital stay, apart from, you know, having my head cut open and my brain completely F***ed with, was being put “on public display” a couple of days after surgery. As I was recovering in my room in the neuro-ICU and slowly regaining mental awareness as the general anesthesia from surgery began to wear off, my bladder suddenly felt like it was going to explode – I really had to pee and I wasn’t sure how much longer I could hold it! I realized that I could not remember the last time that I had actually gone to the bathroom since I was admitted to the hospital, and a quick visual scan of my room revealed that I had my own little private bathroom about ten feet from my bed – perfect!
As I pondered how I was going to physically move myself over to the bathroom to use the toilet, I realized that I was still connected to all kinds of heart and breathing monitors and IVs by way of a huge tangled mess of wires and tubes that I couldn’t make any sense of. I was definitely going to need some professional help getting disconnected from all of this equipment, so for the first time I pushed the big red “help” button on my bed’s wired remote control (that was conveniently positioned right by my side; the remote also controlled the recline functions of the bed and the functions of the television hanging from the ceiling in front of me – these hospital people thought of everything!). When a nurse arrived a few seconds later, I told him that I really had to go pee and that I wanted to use the bathroom that was just a few steps away from my bed – it was so close that I could almost reach out and touch the door handle. “No, I’m sorry but I can’t let you do that,” he said, motioning towards the bright yellow plastic theme park band that was securely fastened to my right wrist and emblazoned with two big, bold words: FALL RISK. Really?! This is what my life had suddenly come down to? I was an ultra marathon runner just a few months ago, I hiked the Inca Trail to Machu Picchu just last month, and now I can’t go use the bathroom like a normal person because I might fall? Are you serious right now? What the F*** is happening to me?!
“You can just go, you’ve got a catheter in you,” the nurse said to me. Umm, no, I can’t. At first I had no idea what he was talking about because I certainly didn’t remember anybody shoving a plastic straw up my penis, but then I was immediately grateful that I had no memory of that particular procedure. So there I lay, trying in vain to let myself “go” through the catheter which was presumably attached to a collection container somewhere out of my sight, but I simply could not do it. Maybe I was having some kind of mental block because I had never tried as an adult to pee while laying on my side in a bed, or perhaps it was the lack of the visual cue of a urinal, toilet bowl, or a tree trunk that I needed in order to let myself go… OR maybe I was having a bad case of “stage fright” because I was aware that I was surrounded by Ashley, several nurses, and possibly a couple of other family members, friends, and some total strangers. I don’t remember exactly who all was there, but I DO remember feeling incredibly embarrassed, humiliated, violated, and increasingly frustrated as I felt like the whole world was watching me and scrutinizing me while I struggled and failed to complete one of the most private and primal of all human acts – taking a piss.
After trying for several minutes with no success, the team of nurses huddled up together outside of the door to my room and hatched a plan to get me to urinate. When the huddle broke up, the head nurse came over to my bedside and told me and Ashley that they were going to check my bladder to see just how full it really was, then remove the catheter and let me try going without it. Another nurse then came over with some kind of ultrasound-type device, squirted a glob of cold, gooey ultrasound gel all over my lower abdomen, and proceeded to pass the ultrasound head over that area. After about a minute she proclaimed, “yeah, your bladder’s pretty full!” Uhhh… you think?! Tell me something I DON’T know!! A few minutes later, she yanked the catheter out in what I can only describe as an incredibly uncomfortable sensation akin to making a “POP!” sound by flicking the inside of your cheek with your finger (another much-hated experience that I may never forget, unfortunately). The head nurse then handed me a long, rectangular plastic bottle with a hole at one end and a handle on top and said, “here, try going in this.” Desperate for any kind of relief at this point, I took the old-school urinal bottle from his hands, maneuvered it underneath the bedsheets, located the hole and, before you could say “pee-pee tepee,” I unleashed a firehose-like torrent of urine that quickly overflowed the bottle and spilled all over myself and the bed. Luckily for me, the experienced nursing staff had the foresight to prophylactically outfit my bed with a puppy-dog housebreaking-style pad underneath my body to capture at least some of the mess.
It was at that very moment that I learned what exactly it is that nurses do for their patients, something I had never known or experienced before as this was the first and only hospitalization of my life: Nurses. Are. AWESOME! Like a well-oiled NASCAR pit crew, an entire team of neuro-ICU nurses instantly materialized out of thin air and began detaching my wires and tubes, changing my bed sheets, giving me a sponge bath, outfitting me with a fresh, clean hospital gown, and reattaching all of my monitor wires and IVs, all with a smile and a great sense of humor. These people are amazing, and I will forever have the utmost respect and gratitude for our nurses; they are truly HEROES. (I would be remiss if I didn’t give a shout-out here to my personal nurse and HERO Ashley who was also in the thick of the action, assisting the nurses with my sponge bath and helping me to get dressed afterwards).
Later that day, I realized that I had not had a bowel movement in several days either, and I was incredibly constipated from the general anesthesia drugs and the cocktail of medications I was taking to counteract the side effects of all of the other medications that the doctors had put me on to aid in my recovery. These included anti-seizure meds, strong steroidal anti-inflammatories, acid reflux meds… and now, they would add a laxative and stool softener to the mix. Enough about me trying to go to the bathroom, though – I’ll save the story (titled, “Shit or Get Off the Pot!”) about my failed attempts at pooping in a bedpan and a portable toilet/chair thingy in front of an audience for another time.
Let’s talk about other things I hated about the hospital experience, like the OTHER plastic wristband that was slowly squeezing the life out of me – this one had my name on it, a bunch of number and letter sequences, and a barcode. Yes, my own personal barcode, just like the one on a family-sized case of flushable moist butt wipes at Costco (that I had no use for anyway since I was severely constipated, but I digress). I learned very quickly that literally EVERY time something was done to me or given to me by one of the hospital staffers, my wrist barcode was scanned first with a convenient little hand scanner, and then a barcode would be scanned on whatever medication or test was being administered to me at the time. Scan me (“Beep!”), scan the pill bottle (“Beep!”). Scan me (“Beep!”), scan the tube of antibiotic ointment (“Beep!”). Scan me (“Beep!”), scan the band-aid (“Beep!”). Scan me (“Beep!”), scan the syringe (“Beep!”), and so on (“Beep!”) and so forth (“Beep!”). Every time a nurse scanned something, I couldn’t help but see dollar signs floating out into the ether. How much did THAT pill just cost me? How much was that IV injection? How much of all of this is my health insurance going to cover, if any? How much, how much, how much?? These are some of the thoughts I had as I began feeling less and less like a human being and more and more like an item in a pharmacy shopping cart with an as-of-yet unknown price tag, but I was fairly certain that it was not going to be cheap. Surely this was not what I really needed to be consumed with and worried about at this particular point in time, but how could I not be?
Oh, one more thing that I absolutely hated: being woken-up at what felt like thirty-minute intervals so that one of the nurses could either make sure that I was still alive and responsive, prick one of my fingers with a lancet to perform a blood glucose test, or to give me some of the most painful injections of my life (apparently an explosive auto-injector to the stomach is the only way to deliver anti-blood-clotting medication at three o’clock in the morning). Regardless, repeatedly waking up to a painful needle stick JUST as I was starting to get comfortable and fall asleep definitely deserves a place somewhere near the top of my negative column. Read more about my aversion to needles in “Kicking the Bucket List.” http://becomepowerful.com/2018/12/24/kicking-the-bucket-list/
I experienced the incredible display of genuine care and compassion from the nursing staff again the next day after I vomited all over myself. My father, who arrived in Durham from Puerto Rico one day earlier to visit me in the hospital, apparently wanted to feel like he was being a useful part of my recovery process, and so he decided to take over for Ashley who had been spoon-feeding me my lunch, an open-face hot turkey sandwich smothered in gravy from the hospital cafeteria. My father must have thought that the more I ate, the faster my brain would heal because he started to shovel forkfuls of food into my mouth at such a blistering pace that I didn’t have time to swallow between bites and I suddenly found myself throwing everything up all over myself, my bed, and the food tray in front of me. This, of course, did not sit well with Ashley, ever my primary caregiver and protector who was always on high alert to make sure that nobody did me any harm. Upon seeing this horrific scene unfold before her, Ashley went ballistic: “What the F*** are you doing to him?!” she yelled angrily at my father. A heated argument between Ashley and her father-in-law (about how to properly care for me) then erupted right in front of me. To say that tensions in the room were running high is a gross understatement. Somewhere in the middle of all the chaos, a small army of nurses had again seemingly materialized out of thin air, cleaned up my vomit, changed my gown and bed sheets, and brought me a fresh cup of ice water to cleanse my palate. One word: HEROES.
Speaking of hospital food, I know that it historically gets a bad rap for being unappetizing at best, but I actually thought that the ham and cheese omelette with buttered toast that Ashley ordered for me one morning from the hospital room service menu was decent, and I was actually enjoying the open-face hot turkey sandwich smothered in gravy before my dad made me throw it up. Interestingly, though, my favorite food items on the hospital menu quickly became chocolate pudding, apple sauce, and Jell-O, as they were the only soft and somewhat soothing foods that I could reliably swallow with relative ease after my breathing tube was removed, resulting in the worst sore throat of my life (I learned later that I was intubated just before I went under general anesthesia, but thankfully I don’t remember that procedure either). I remember asking Ashley one morning to pour the little carton of orange juice that came with my breakfast over a cup of that awesome hospital crushed/chipped ice so that it almost resembled a snow cone; this quickly became my new favorite treat, as it was very soothing to my raw, irritated throat.
My absolute favorite meal during my entire hospital stay was a barbacoa burrito the size of my head that my favorite HERO Ashley surprised me with for dinner one evening. She had snuck over to the Chipotle restaurant down the street from the hospital, and ordered me my favorite burrito combination: shredded beef barbacoa with brown rice, black beans, cheese, sour cream, lettuce, guac, and pico – hands-down the best meal of the week!
Back to things I hated: the drone-like buzzing sounds of the automatic blood pressure cuff as it inflated and squeezed the life out of my right arm every couple of minutes, as well as the inflation/deflation sounds of the intermittent air compression boots that were helping to push edema (swelling) out of both of my legs, which were elevated at the foot end of my bed. To this day I still have random nightmares and daymares of these sounds, and I can also still hear the beeps and blips of the ECG/heart rate and other vital sign monitoring machines in the room all around me.
I am grateful for Ashley’s attempt to get me out of my hospital room for a brief moment. Three days after major brain surgery, I found myself finally resting somewhat comfortably in my hospital bed in the neuro-ICU. The effects of the anesthesia were finally wearing off and I was starting to feel a little more mentally aware and alert. Ashley, who had been living and sleeping on a cot/bench next to me in the room all the while, got it in her head that she wanted to get me close to the windows of the seventh floor Neurosciences waiting room at the Duke Medical Pavilion so that I could catch a glimpse of the Fourth of July fireworks display that was going on outside over the nearby Durham Bulls Athletic Park. Realizing that I was physically exhausted and finally feeling comfortable in the position in which I was resting in my bed, I protested that I didn’t want to go anywhere and see any “stupid fireworks.” I just wanted to lay there and try to sleep instead of going through all of the trouble of having the nurses disconnect me from everything, somehow move my frail and weakened body into a wheelchair just to see something that I’ve seen a million times before. Ashley persisted that she really wanted me to go with her to see the display and thought that it would be good for me to get out of that room for a bit and have a change of scenery. After much back-and-forth and realizing that I had inadvertently hurt her feelings by resisting so hard while she was trying to do something nice for me and for us, I finally gave in. With the assistance of a couple of nurses, I clambered into the wheelchair and Ashley wheeled me out of the room, down the hallway, and straight ahead towards a large glass picture window at the end of the hall. There I got my first view of the world outside of the hospital since having been admitted five days prior. As we approached the window I could hear the whistles, explosions, and crackling of the fireworks in the distance, but no matter how close to the window Ashley pushed my chair, I just could not crane my neck far enough forward to see around the corner of the window frame that was blocking my view of the fireworks. I never did get to see any fireworks that day, which left Ashley visibly upset and dejected, but I did get to see my number one HERO in action and at her very best; my absolutely incredible wife and best friend Ashley who wanted nothing more than to give me a taste of freedom, to see me freed from the constraints of the hospital room and all of the wires and tubes that kept me attached to the hospital bed, and for us to have one joyous moment together as husband and wife, watching the fireworks on the Fourth of July like we always did in years past. For that (and so many other selfless acts that are too many to count), I am forever grateful to her, my most cherished, revered, and HEROIC of all of my HEROES in this story.
One of my last and most painful memories from the entire hospital stay came on the day of my discharge – a day that was otherwise unbelievably happy and joyous! We got the news from one of Dr. Allan Friedman’s Physician Assistants that I had passed all of their myriad cognitive and physical function tests and that I was cleared to return home and continue my recovery and rehabilitation outside of the confines of the neuro-ICU and away from the watchful eyes of the nursing staff. However, before they could actually let me leave my room, the doctors had to tie up some loose ends… literally. Unbeknownst to me, but knownst to everybody else in the room, I still had a couple of cerebrospinal fluid drainage tubes sticking out of my head; one just above the right side of my forehead on the hairline, and another in the back of my head at the base of my skull. Let me preface what follows with the fact that, at this point in time, any residual effects from my surgical anesthesia were LONG gone; I was now wide awake, fully alert, and capable of seeing, hearing, and feeling EVERYTHING. As I was sitting up in my now halfway-reclined hospital bed, the PA walked up to the side of the bed and told me and Ashley that he was going to remove the drainage tubes and close up the holes. That sounds simple enough, I thought to myself. When he pulled the plastic tubes out of my skull, it was a very strange and uncomfortable sensation to be sure, but I would not say that it was particularly painful. What he did next, however, was EXTREMELY painful. Without so much as a heads-up nor any kind of anesthetic, he started sewing up the open holes in my scalp with a little curved NEEDLE and thread. Did you hear what I just said?? HE STARTED SEWING UP THE BARE FLESH ON MY HEAD WITH NO F***ING ANESTHESIA!!! I know that I screamed like a newborn baby during a circumcision multiple times. “Aaaarrrghhh!! Jesus Christ, stop it!! What the F*** are you doing to me??!!” I continued to hurl obscenities at him until he was finally finished. I am sure that the whole procedure really only took a couple of minutes, but it certainly felt like an hour or more of pure unadulterated physical torture, and to this day I still have no earthly idea why he had to do it that way. So yeah, I pretty much hated that part.
Armed with a mile-long laundry list of discharge instructions that we would have to follow and medication prescriptions that we would have to fill, Ashley and a nurse loaded me onto a wheelchair and transported me to the curb outside of the hospital lobby, where Ashley’s mother was waiting for us in her car along with my own mother to take us home; home to our brand-new house that we had yet to do any actual living in, but that would become the place where I began and completed my recovery from brain surgery. Home sweet home!
During my week-long hospital stay, Ashley slept most nights on a very uncomfortable fold-out bed/bench in the corner of my hospital room. Other relatives, including my mother and mother-in-law, slept on chairs and benches in the neurosciences floor waiting room. A few close friends helped Ashley out by driving her to and from our house where she could take a shower and get fresh clothes, and also took her to nearby restaurants so she could eat non-hospital-cafeteria food. They even took her out on walks in the nearby Sarah P. Duke Gardens to get some fresh air and take her mind off of my surgery for a few brief moments. One close girlfriend of Ashley’s even cut her own personal vacation in Maine short and flew back down to North Carolina to be with her when she heard the news of my surgery. These friends and family members know who they are if they’re reading this; they are our HEROES, and we will always be ingratiated to them for their love and kindness.
Two days after surgery, a couple of my EMPOWER coworkers stopped by the neuro-ICU to visit with me for awhile, a welcome diversion at the time to be sure. With the encouragement of the on-duty nurses, my friends and teammates took up positions by my sides and helped me to stand up out of my hospital bed on my own two feet for the first time and take my first steps since having major brain surgery. They led me on a short walk out of my room, down the hallway and around the U-shaped neuro-ICU floor, parading me in front of the nurses and residents who were on duty and clapping and cheering for me as I slowly shuffled by. They even managed to take me up and down a couple of steps. Those guys are also HEROES in my story, and they know who they are if they’re reading this.
At a follow-up visit to the Brain Tumor Center a few days after my discharge, I was scheduled for an appointment to finally get all of the stitches and staples removed from my craniotomy incisions. As the nurse practitioner was clipping out the individual staples (and there were a LOT of them; see the photo accompanying this blog post) with what looked like a small medical-grade wire cutter, I clearly remember seeing the little metal staples fly across the room and hearing them bounce off of random objects in the room with each snip: “Snip… ping! Snip… ping!” Next she began removing the sutures, and I could definitely feel everything she was doing as she snipped each suture with a pair of sharp, pointy scissors. She then slowly pulled each piece of short black thread out through the holes in the raw skin and flesh of my bare scalp. I am still dumbfounded by the fact that such incredibly intelligent, experienced, and highly-educated doctors would use BLACK thread to sew up the incisions on my scalp; coarse, jet black thread that perfectly matched my coarse, jet black hair in both color and thickness. Perfect for disguising the stitches amongst my actual hair, and even more perfect for making it impossible for the nurse practitioner to FIND all of them during the removal process. That, however, was not her fault, and I am grateful for the time and effort that she put into trying to clean and tidy up the suture “situation” on top of my head – she even took some time to educate me and Ashley on how to regularly clean and re-dress the healing wounds on my scalp with antibiotic ointment and bandages. My neuro-oncologist’s nurse practitioner is another HERO in my story, and if she is reading this right now she knows who she is.
Over the course of several weeks following that visit, I would continue to find random sutures that were still left sticking out of my scalp, and each time my HEROIC nurse and primary caregiver Ashley would come to my rescue and pull them out either with a pair of tweezers or her bare fingers – a strange and uncomfortable experience for both of us each and every time to be sure. I even found a couple of the rogue sutures while attempting to cut my hair for the first time post-surgery while using my electric hair clippers. It was quite an unpleasant sensation every time one of those threads got caught in and yanked by the rapid cross-action of the clipper blades – YOWCH!! Talk about uncomfortable!
One of my fondest memories upon arriving home from the hospital was my first meal at a real restaurant. That first night home, neither of us felt like cooking; we were both exhausted from the past week of overstimulation at the hospital. While foraging in our brand-new kitchen that was bereft of any kind of food as we had not yet had a chance to stock the fridge or pantry, I turned to Ashley and said, “you know what I’m craving right now?”
“I have no idea love… tell me, what are you craving?” she asked.
“Mexican food,” I said, “but not just any Mexican food… I feel like I want to sit down and completely dominate an entire basket of chips and salsa, like just totally chow down and eat the whole damn thing, because I feel like somehow shoveling chips and salsa into my mouth nonstop might make me feel normal again, because that would be a totally normal thing for me to do. I just really want to have that experience right now.”
“Like, right now? You want to go to a Mexican restaurant right now?” she asked incredulously. It was four o’clock in the afternoon, so not exactly lunchtime, but not quite dinner time yet either.
“Yes, is that okay with you? I’m pretty hungry… are you hungry? I know you would have to drive us, but isn’t there a decent one at the mall right up the street across from REI? I think we ate there one time after visiting the house construction site.”
“Yeah, we did; I think I remember it was good! Sure, I suppose I could eat – just let me change my clothes and we’ll go, ok?”
About fifteen minutes later, my face was buried in the first of what would be two whole baskets of chips and salsa, followed by an order of my favorite carne asada soft corn tacos topped with shredded cheese, onions, cilantro, and a squeeze of fresh lime. I came; I saw; I conquered, and I was satisfied. If I remember correctly, Ashley even ordered us the churros for dessert to both celebrate my discharge from the hospital, and to commemorate our first night of living in our new home.
Speaking of food that we didn’t have to cook, in the days and weeks immediately following my discharge, Ashley and I had our first-ever experience on the receiving end of a “Meal Train.” For those unfamiliar with the concept, it is a website where friends can sign up for calendar dates on which they are supposed to either cook or purchase a meal and deliver it to the beneficiaries, with the objective of helping to ease the burden of cooking or procuring a substantial daily dinner while recovering from a major life-altering event. We quickly discovered that some of the meals were absolutely incredible, super tasty, and satisfying. Others, however, were actually pretty gross and thoroughly unenjoyable. Sometimes eating other people’s cooking just isn’t what your taste buds, brain, and body can process immediately following major brain surgery; sometimes what you really crave are the familiarity and safety of the flavors of your own cooking or your favorite local restaurant. We certainly appreciated each and every one of the thoughtful gestures and efforts that our friends, family, and sometimes total strangers made for us, but to some degree the “restaurant gift card” option was a much safer bet. I can’t stress enough how truly grateful we are for the contributions that our friends and family made during our time of need and they too are the HEROES of my story, even if we didn’t always like the way the food tasted or couldn’t remember who we had to return a particular Tupperware container to after we washed it. Seriously though, keeping track of all of that shit is a pain in the ass.