From Hole in my Top to Reaching the Top: Surgery, Seizures, and Summitting

            And so it begins…

I awoke at 4:15 in the Morning April 20, 2022, not because I couldn’t sleep, but because I was due at the hospital at 5:00 AM for my craniotomy.  I popped right out of bed, while there were some nerves, I was oddly excited.  Now that is a dumb thing to say, being excited about a hole being cut in your head and rummaging through your brain ain’t exactly Disneyland (it’s closer to Lagoon on a hot Memorial Day)?  Yet, for at least the past nine months this little brain tumor has been inching me to a premature death. Today was finally my chance to stop this timeline and start adding back years that were swirling around the drain.  Today was my fightback day and I was excited for it.

As there was no sense in getting all dressed-up just to put on a butt-less hospital gown and with no hair to comb, I threw on sweats and a ball cap to have my wife drive us to the hospital.  Like a boxer, I had prepared some walk-out music on a playlist for the drive to the hospital. Oingo Boingo’s Flesh ‘N Blood was my intentional first song on the list, not just because there would be a fair amount of flesh and blood that day but because its lyrics have been my go to during life’s little challenges for years: “When the catcher comes to take my soul; He's gonna have to fight me first; 'Cause I'm not gonna give up the ghost.”   More so than ever the words seemed apropos.  With no traffic, our drive was far shorter than my playlist and my needed processing time to take in all that was happening. 

        The receptionist handed us masks and directed us to the surgery check in floor. Dawning my mask, all I could think was that I had bigger fish to fry than Covid at the moment.  Arriving at an unexpectedly busy 4^th floor surgery check-in for 5:30 AM, they meticulously verified my identity and procedure which was much appreciated, as I did not want to wake up with a new titanium hip or have mistakenly been put through some-type of they/them reassignment. Of those milling around the surgery check-in, I perceived that I was a priority which was nice and at the same time concerning.  Taking me back to the prep room, they then gave me the infamous backless hospital gown.  I rolled my eyes, then surprisingly they also handed me some long trunks, which seemed uncharacteristically modest for a hospital.   Spoiler alert, once they knocked me out, I never saw those bad boys again, so much for modesty.  It is always unnerving to wake up with less clothing on than you remember going to sleep in, particularly when chemicals are involved.

Sprawling out on my gurney, the nurse began to wire me up with IV lines and an obscene number of sensors in places that had yet to be sensed on my body (including one sensor that I did not discover and remove until a week later).  Assuming for a surgery and recovery this long they would be catheterizing me, which I feared more than the skull sunroof.  I only hoped they would wait and do this until I was fully out.  As I was contemplating this, the nurse lifted up my layers of blankets while holding a large clear tube roughly the size of a vacuum hose, needless to say I was startled.  I closed my eyes and tried to find a happy place.   I felt a fidgeting and heard a snap, a steady flow of warm air inflated heating ducts built into the gown I was wearing.  The nurse then explained that the operating room would be very cold.  The tension in my body eased; well eased as much as possible knowing that my brain would be open to atmosphere in a matter of moments.  IV and heat lines inserted, they rolled me out of the prep room.  Where this could not unreasonably be the last time my wife and I saw each other in this life, I should have said something profound, beautiful or even funny (though graded on a curve considering the circumstances), instead I managed a lame, “See you on the other side.”    Covering my bases in an intentionally dual meaning quip; total lawyer move.

Wheeling me down the hallway, I met my operation team.  This included my anesthesiologist going by the moniker Mad-dog Murdoch (solid A-Team reference) and a surgical nurse wearing titanium craniotomy brackets as earrings.  The same brackets that would shortly be holding my skull together.   I knew I was in good hands.   After intros were completed, I was on the move again, this time for my pre-surgical MRI with coordinates to map my brain on and X-Y-Z grid allowing the doctor to dig as deep as he could without causing unnecessary permanent brain damage.  Finally, I was wheeled to the actual surgical room and the nurse was correct, it felt like a meat locker.

The room looked as much like a manufacturing lab as it did a hospital room.  There was a screen on every side of the room featuring the familiar picture of my brain with the large white mass in the right frontal lobe.  One screen to my left was a little different, there staring back at me was an unflattering 3D model of my own head – face and all.  Kind of a creepy personalized Max Headroom.  Odd that the creepiest thing I saw that morning was my own face.  As I laid there chilling, in the thermal sense of the word not the Netflix sense, the doctor and team were pulling out various cutting devices reminiscent of the pit of despair, minus the Albino. Knowing that these tools were shortly going to be used to carve out a hockey puck sized chunk of skull from my head.   It was then the genius of one of my daughter’s picks for my “Forget Ur Tumor” playlist was appreciated; at that moment Ireally did want to be sedated.  At this point Mad-dog Murdock reappeared and said it was time to get “a little drowsy.”  The plan was to just barely put me out, kind of like for a wisdom teeth extraction, and then wake me up once there was a hole in my head.  This way if I began to respond slowly, the doctor knew to stop digging. Tapping into my IV, I felt myself fading quickly. Though still pretty confident I’d make it, I had enough time to think.  “What would I see when I wake up next?”  I was hoping not a tunnel of white light, though that was preferable to a “ring of fire.”

My consciousness faded out, a momentary pause, and then faded back in. I was in a tunnel surrounded in pale blue, not a contingency I had anticipated.   Not heaven, not hell, maybe the 80’s?   As my eyes regained focus, I recognized the face of Mad-Dog Murdock at the other end of the blue fabric tunnel.  I assumed this must be the point where the doctor would be melon-balling the tumor out of my open brain.  I knew I wanted to hold very, very still, even though the doctor told me that my head would be bolted into some form of contraption at this point. Unnerving none the less, they obviously gave me something to relax me because that thought did not freak me out, like it should have. Doctor Murdoch began asking me questions and had me push and pull on his hands at different times.  Thinking I am funnier than I really am and also being loopy I was doing my best to crack jokes. I apparently was doing my best to distract Dr. Reichman as he was mulling about in my brain, not a good move on my part. It somehow came up that I could speak Mongolian.  So I gave it a go on doctor Murdoch. Trying to say “I have an excellent brain, be careful” but instead I actually said “I have a beautiful chicken, be careful,” tarkhee vs. takheaa understandable given Mongolian is a hard language… and they were digging around in my brain.

After 20 minutes of hand moving and talking which all felt very normal and promising to me. I was told that I was nearly done and they were going to put me a sleep again.  With a conspiratorial look, Mad-Dog Murdock leaned in and asked me if I wanted to see my brain. The answer was an obvious “yes,” I fortunately did not try to nod.  Leaning his cell phone over the blue drapery for a moment he brought it back and showed me a rather large cavity in my brain where the tumor had once been.  My 3D model face was no longer the most disturbing thing I'd seen that day. Still, all things had felt normal enough, I could talk and move my extremities, so things must have gone well. Murdoch again played with my IV and the light around me began to dim.

I was back and expecting to be laying in a quiet recover room.  Instead, I woke to bedlam and hustling all around me. My gurney was being run down the hallway as nurses woke me up. I was asked if I was able to slide myself from one gurney onto another gurney, I was confused why they would have me exert myself so soon after surgery.  I was pleased to find I was still strong enough to lift my body with my arms on to the adjacent gurney, my body was trailed by a bundle of wiring worthy of a rock concert sound booth. I was informed that I'd had a seizure and was being rushed into a CT scan to see if there was any bleeding in my brain.  Laying there quite chilled again, I had one of the more metaphysical moments afforded by brain surgery, I got to contemplate if I was still “me.” 

I knew who I was, where I was, and why I was there.  That is a good start.  I can’t say I mentally felt any different, but that leads to the existential question; how does one know if they are brain damaged?  Isn’t that a fundamental part of being nuts?  I concluded that my brain was fully functioning.  I admittedly am still waiting for all of my loved ones to sit me down and tell me that I really am irreparably brain damaged and they have just been humoring me for a year (or possibly for the past 49 years) just to make me not feel bad about myself.

       CT scan done, my wires and I moved back to my gurney, and I passed out again. This time I awoke a bit more gradually in the intensive care unit; my wife and parents were there though I couldn't say if they were there when I first woke up or showed up later. My time perception was off and remained so the next few weeks.  The doctor explained that I'd had a large seizure just after they screwed the chunk of skull back into my head, but there was no brain hemorrhaging. The doctor said the seizure had knocked out my muscle control on the left side of my body. While I felt fine, I noticed everyone in the room was gaping at the left side of my face. Something must not be right.  Part by part, I began a self-test of my left side, moving the left side of my mouth up and down, my left eyebrow, then flexing my fingers of my left hand, and finally snapping the toes on my left foot.  I thought that toe-snapping was somehow impressive, but no one else seem quite as excited as they should have been. It was only after someone showed me a picture of myself that I understood the gawking, the entire left side of my face was just sagging lifelessly.

I popped in and out of sleep for the next hour or two, I was understandably poor company to the family members waiting in the room and I finally managed to seize and keep consciousness from the arms of anesthesia driven sleep. It wasn't more than a couple of hours after surgery that they wanted to see if I could walk, having just recently seen a real time picture of my brain it admittedly seemed a bit early to be sauntering down the hallways. Nevertheless, loading my IV and wiring kit to a wheeled IV holder, my wife my, nurse and I walked about 100 yards down the hall and back. I was quite pleased to be walking.  More than just snapping, these toes could actually support my body weight.

Despite being able to walk, I soon found that I had lost my ability to taste, my ability to direct and keep food in my mouth, and my ability to drink without aspirating the liquid into my lungs.  I was strongly resembling Ruprecht of Dirty Rotten Scoundrels and I am sure there were discussions of topping my fork with a cork.  To add insult to literal injury, the rehab therapist would not let me use a napkin, but insisted I use my meandering tongue to clear off the pudding hither and thither across my face.  I pictured myself as the Sarlacc looking to get a hold of Boba Fett to scarf him down and it wasn’t flattering.

 Thankfully done eating and visitors tapering off, I spent the next half-hour trying to unlock my laptop with a 6 number password to watch a movie. Clearly my coordination was wanting.  I was sure I was typing in the right numbers, but the password manager disagreed.  I am sure folks on the other end of the nurse-cam were getting a good laugh at the chimpanzee trying to do algebra in the room.  Throughout life, my brain had willed my body through all sorts of injuries and pain, but now the tool with which I used to force my body into submission had the processing power of a pan of candied yams… with extra-marshmallows. Still, I was alive and grateful for that.

            The doctor encouraged me to get up every couple of hours for a stroll around my intensive care floor in my hospital gown.  As much as my head felt like mush, my legs were impatient with my lazy upper half and wanted to move.  So, every two hours or so, we loaded my collection of IVs and wire ambulatories onto a cart and my wife or nurse, and I went for a stroll around the ICU floor with my butt hanging out.  I am sure the poor Navaho patient a few rooms over regales his grandchildren with stories of the nights of the many pale moons.  I wish I could say that was the worst of it.  On an early walk with an accompanying nurse.  I mentioned that something was catching… down there.  She promptly dropped to a knee and unceremoniously lifted up the gown in the middle of the hall. Searching around for a moment I felt a sharp tug accompanied by a tearing sound. Apparently, the surgery crew taped down the catheter to the nearest bulbus member they could find and left the tape once they un-plumbed me.  After having a divot of your cranium removed and screwed ack on; a little testicular tape removal should have been a downgrade in severity, still stung though.

The ICU floor was adorned with color photographs taken by an employee of the many natural wonders of Utah. My wife and I walked the hallways and we tried to name as many as we could.  It was a good brain test, I was pleased to be above 90% and having been to nearly as many.  The second day after such a lap around the floor, I walked passed my doctor who was still recovering from recent knee surgery; effectively testing me out of any physical therapy. My doctor caught up with me in my room a few minutes later, delicately inspecting my head with his fingers, “Well, this can come off” he pronounced, ripping off a 10” piece of medical tape like a Fruit-by-the-Foot.  My wife, not terribly inclined to gore, refused to look at the 30 staples arching across my head.  I totally felt like a bond villain.  I may need to get a hairless cat and a volcano layer.

Visitors came and went between naps, or perhaps I only realize they were actually there when I woke up – deductive reasoning was returning.  I was scheduled to go home on the fourth day, I was progressing nicely so they unwired me bit by bit, allowing me unsupervised bathroom trips without pushing any nurse buttons… AND PANTS!  That was so liberating.  My last morning, I woke up, nice and early.  I had never been in bed that long my entire life. Being wide awake, I figured I’d order my breakfast from the kitchen so I could leave as early as possible.  Picking up the room phone, I pushed the “Order Food” button.  After a few rings, I got a message that the kitchen opens at 6:30, and I could call then.  I looked at my room clock, surprised I was that early.  I laid back down until the minute hand passed the bottom half of the hour and called again.  Same message. Bothered that they were late, I waited a bit and called again 15 minutes later with the same result.  This was repeated 3 more times until my nurse came in for a morning check-in as his shift started.  I inquired why the kitchen wasn’t open.   He informed me that it opened at 6:30, in another hour.  I protested that it was now 7:30, he patiently informed me that it was actually 5:30.  Scrutinizing the clock, I realized I had been up since 4:30 trying to call a kitchen that didn’t open for another 2 hours.   Obviously, this brain was not ready for prime time.

Brain smoothly functioning or not, I got released late that morning.  Wanting to be a hero, I said I would walk to my car after being wheeled to the lobby, not realizing that parking was rather full that day.  After walking for several minutes, I was feeling a little wobblier than my ego originally anticipated.  My wife kept pointing at things I should not trip on.  It would have been patronizing if it was not actually necessary.  Finally finding our pick-up, I pulled myself into the passenger seat.  I wouldn’t be driving for a while.  15 minutes later, I arrived home and crawled into bed. It was nice to be back in my own bed, though I suspect my pillow did not reciprocate the feeling.  Sleeping with a head full of weeping staples, my pillow had a bit of the Lizzie Borden house vibe.

Years ago, my father was cleaning an outdoor grill with acetone, forgetting about the lit pilot light.  Within seconds, his hands burst into flames.  Doing his best Tom and Jerry impression he ran with flaming hands to a sink fortunately full of cleaning water and doused his digits, but not before the latex gloves he was wearing melted into his hands leaving serious burns.  Wrapping his hands in white gauze, the doctors said he might not ever recover full mobility in his hands and to take it easy on them.  I visited a week or two later as my dad was trying to fix a sprinkler line with mummy hands, the bandages were covered in dirt and blood spots from overuse.  When they unwrapped his hands after a month, they pronounce his recovery miraculous which he attributed to the fact that he kept using his hands during his recovery.

Not wanting, to be alive at the cost of no longer living, I needed to get back to life as normally as I could.  Taking a lesson from my father, it was time to push myself. Cue the training/recovery musical montage, ala Rocky III.  I took regular walks around the neighborhood with a walking stick, weeded my flower beds, shot some baskets, did brain puzzles, played catch in the front yard (with a tennis ball as I took a few to the shins), tried Tie Chi and attempted and failed to memorize the St. Crispin’s Day speech from Henry V.  The folks from church kept meals coming in and it was 100% Mexican, which was fortunate, as I could actually taste Mexican food, but not much else.

A week after surgery and after being at home for a couple of restless days, I wanted to get out and try to be normal.  My mom agreed to take me to Temple Square to see the spring flours.  She offered to drive the hour down to pick me up and then the hour back up to Salt Lake.  Not wanting her to have to drive so much.  I suggested I take the Front Runner commuter train and meet her along the way. My wife was rightly concerned that I might get lost or my 10” row of cranial staples and drooling might scare my fellow riders.  I had a brilliant solution, or at least the solution a guy with brain damage would come up with.  I found a “HELLO My name is…” sticker in a drawer and completed the tag in my shaky handwriting, so it read: “HELLO my name is Ruprecht, I know I look bad, but I am actually fine.  If I do get lost, please call my wife at (her actual phone number)”. Slapping that bad boy on my shirt pocket, I boarded the train with a walking stick, leaning the good side of my head against the window I promptly fell asleep.  I set an alarm to wake me up around the time my mother would join me.  Startling back to consciousness by my alarm, there were a number of concerned glances my way, but no one had called my wife.  The name tag was successful! 

My mother joined and I now had a responsible adult to keep an eye on me.  I passed out again.  Brain surgery makes you sleepy. Temple Square was beautiful, though my mom did have to explain to quite a few people why she had Frankenstein’s monster in tow.  My Pediatrist brother was downtown that day to help at a homeless clinic and joined us for lunch.  The day I had my craniotomy, he was in his first amateur boxing match, which he won.  Not sure what prize he got, but it included a nice black eye.  Someone was going to call Child Services on my mother with boys like these.  Great day as I made it home in one piece.

Staples came out the next day, allowing me to sleep on my preferred right side.  My next adventure was to go with my son to the Zoo.  I figured he could push me around in a wheelchair because of all of the hills.  Seeing it was a charge to rent a wheelchair.  I just walked.  My son later told me that this reminded him of a certain unnamed song by the Dead Milkmen about the zoo which has not aged well in our more sensitive times.  While sitting in a room looking at the tigers, a couple of girls meekly asked what happened to me.  Now, I know I was slow, because I told them the truth.  The quicker side of me would have said “When the sign says, ‘Don’t Pet the Tiger’ they mean it!”  I so regret missing that opportunity.

               With my first adventures successful, I applied my dad’s burned hands rule and jumped full back into life, over the next four months I went to New York, The Indy 500, church youth summer camp, Lake Powell, Capital Reef National Park, my 30^th High School reunion, Boston, the Family Cabin, and my son’s wedding. Though I tried to be normal, I continually booked wrong rooms and flight days and was treated a little special. In New York, my wife flew out the evening before I did since I was going directly to the Indy 500.  That night I visited the Empire State building, catching the last tour of the night.  I spent an hour walking around the top, looking over the edge and up at the antenna on top while listening to music.  As I cued up to go down the elevator, a staff member said, “Did you have a nice night Mr. Hansen.”  Startled that he knew my name, as I was not wearing a Ruprecht tag, I nodded my head curiously “That’s right. Yes, I did.”  He smiled again and said Mr. Brett Hansen” (emphasizing the Brett) but as a statement rather than a question.  I just responded that it was impressive he knew my name. 

Though I was too startled to ask how he knew it.  I pieced this theory together.  A single male booking a last tour of the night, likely set off a suicide watch on their security system.  Tickets were purchased online with my name on it.  Seeing me with a shaved head and obvious surgery scar probably moved the suicide watch to a suicide alarm. This poor security guy was likely watching me all night to make sure I didn’t jump.  As I was heading down, he confirmed who I was so they could stand down. 

I wasn’t ready to jump as I got my biopsy result back.  It was an IDH-mutant Grade 2 Astrocytoma, which is non-cancerous and indicative of a higher survival rates.  So good news as far as tumors go, though they are not harbingers of long life and vitality at any grade.

The end of the summer brought the opportunity for one final challenge where I could show myself that this wouldn’t beat me and would hardly slow me down.  I lead the 11-13 boys at church.  One of my beliefs is that these boys need some adversity.  So, each year I plan to hike Mt. Timpanogos with them, the same mountain that had loomed over me as I anxiously waited for my first MRI, months ago.   The hike day was by chance scheduled for August 20^th, four months exactly from the day of my craniotomy.  The forecast was not looking great with scattered thunderstorms.  I have a strict no cancellation philosophy with youth activities.  We may have to abort, but we will always give it a try. 

Hitting the trail with eight boys and three leaders early in the morning, the weather was great.  We had some crying the first few miles, but some pushing and me carrying their packs got them moving.  It was great to be up there, a few thousand feet higher and the rain started.  We kept pushing the boys through complaining.   By the time we stopped at the collapsed hut near the upper meadow, we were in a dripping freezing cloud.  Deciding to push the boys to the saddle, a worthy accomplishment on any day, where you can see on the other side of the mountain, but still a mile in length and several hundred feet in elevation from the peak.  We pushed on through the damp.

Just then, my phone began to buzz with texts from my family, asking if I was OK.  My sister called right afterwards.  Curious what the fuss was about, I answered.  Apparently, my wet phone was butt-sharing my location in my family group chat with no accompanying explanation.  They were understandably concerned that their brain damaged brother/son was repeatedly sharing his location in the middle of the Wasatch Wilderness Area. Clearing up the confusion, I put my phone on airplane mode and pushed on.  As we neared the scree scramble just before the saddle, half of the boys sat down and wouldn’t go any further.  One of the leaders stayed with them and I pushed forward with three of the boys with me, one boy being with his father way ahead near the summit.       

      Arriving at the saddle, I thought I might cajole these three to finish up and go to the top, but they !were done.  And I didn’t blame them, it was cold and wet and starting to sleet.  Looking at the boys and then back at the peak, I really wanted to know what was left in me. I told the three with me to head down to the other leader a few hundred yards below us and that I was going to make a run for the top.  Well run is not what I did, I inched myself up in the clouds and heavier rain.   Nearing the summit Timpanogos has a tricky narrow switch back between two rock formations, this was nearly a waterfall at this point and was a snowy water fall on my return.  Clearing that hurdle, I knew I was nearly there.  The last stretch I had to stop every 100 feet or so to catch my breath in the thin air.  This was hard, but the end was near.  I found our other leader and son waiting for me, but I couldn’t see the little building designating the top of the mountain, suddenly through the clouds it materialized.  Full on dragging at this point, I stepped into the shelter designating the peak.

From struggling to walk and talk in the hospital now 8,000 feet below me, to standing at the top of Timpanogos 4 months later, I knew I had won my battle.  Not the full battle with the brain tumor, whether it grows back and eventually leads to an early demise is outside of my control; which the survivability data says it is more likely to than not.  What I can control, however, is how this collides with my life, my faith, my happiness, and my hope.  And standing here atop the mountain that ominously loomed over me as I contemplated if this could be the end, I can confidently say: Round 1 goes to me.