Scott Ryan

  

 

April 2007

  Scott Ryan

 

Canton, Michigan  

 

Diagnosed 3.5 cm AN in August 2004 at age 28

 Microsurgery #1 (Retrosigmoid Approach)

 October 7, 2004

 

Microsurgery #2 (Translabyrinthine Approach)

February 1, 2006

 

Gamma Knife Radiation

July 17, 2007

 

 

“YOU HAVE A BRAIN TUMOR.” My heart started racing. I could feel myself growing faint. I leaned my back against the wall of the small exam room and slid down to the floor. Dr. P continued, “IT’S LARGE AND IN A BAD SPOT, COMPRESSING YOUR BRAIN STEM, WE NEED TO SCHEDULE SURGERY TO GET THAT OUT OF THERE.” I closed my eyes and tried to regain some sense of composure. I was numb.

 

After weeks of research, testing, questions and explanations, it was as simple as that. I have a brain tumor. I’m going to need … gasp … Brain Surgery.

 

Just weeks before this, I was a healthy guy; never having been in the hospital as a patient in my life. I’m only 28 years old. I had no symptoms at all. I played basketball and softball weekly. I was active and I felt good. One day, while loading some furniture into a truck at home, a rubber bungee cord with a metal hook on the end had snapped back and violently struck me the head. I headed to the Emergency Room where the stapled up my wound and ran a quick CT scan to make sure there was no internal damage.

 

The following day the nurse called me and asked me to pick up my CT results and take them to my Doctor. My Doctor reassured me that everything related to the wound looked fine, but that the CT technician noticed some compression in some other parts of my brain. He admitted that he was no specialist, but things looked relatively normal to him. He said that it was difficult to clear me by only looking at a CT scan, and recommended that I have an MRI done and take it to a specialist, “just to be safe.”

 My Primary Doctor referred me to “the best Neurosurgeon in the area,” Dr. P. So here I am and in the process of a week, I accidentally cut my head and by total coincidence, the head scans show a totally unrelated “golf-ball-sized tumor” in my head. I’m now going from appointment to appointment visiting a ridiculous amount of Doctors and specialists.

 

My life has been turned upside down. I sit on the Internet and read horror stories about brain surgery. I read about people who can no longer hear, walk, or even blink. I read about brain stem compression and how fatal it can be if the tumor continues to compresses my brain stem. I compare my MRI scans to those online and my tumor looks much worse; my brainstem much more compressed, than those I’m reading about.

 

My family & friends continue to try to put a positive spin on everything. I’m continuously told how “lucky” I am that they discovered the tumor. “YOU’LL BE SLEEPING THE WHOLE TIME,” they explained about the surgery, but this felt like much more than a nap to me. I know people mean well, but I was so pessimistic about the whole ordeal that I just wanted someone to say, “YOU KNOW WHAT, THIS SUCKS.”

 

Dr. P and my Otologist, Dr. L., suggested that our best shot at preserving the hearing and facial nerves might be to do the surgery in two stages. “WAIT? WHAT DOES THAT MEAN?” I asked. “TWO SEPARATE SURGERIES,” they replied. TWO brain surgeries? You’ve got to be kidding me? Who has two brain surgeries? I don’t even know anyone that has had ONE! They explained that they wouldn’t know how bad the tumor was until they “got in there,” but if they felt that they were going to compromise the hearing and facials nerves while removing the tumor, they may stop and come back another time. Allowing my body time to recover in between procedures. I wasn’t exactly excited about the prospect of two surgeries, but if it could save my hearing and facial function, I was willing to trust my Doctors. The hope was still that everything could be accomplished during one surgery, but the option was there if the tumor wasn’t cooperating.

 

Choosing the treatment that is right for you can be difficult. In my experience, people who had Radiation pushed radiation and people who had microsurgery emphasized the “pros” of having surgery. This is a decision that needs to be made by you and you alone, with your Doctor’s input of course. For me, the decision was easy; microsurgery was my only option. With that, we scheduled the surgery for October 7, 2004.

 

What do you do a month before having brain surgery? “Live Like you were dying,” right? Go skydiving, go on a vacation, and see the Grand Canyon? Not so much. I cut the grass a lot.

 

I did whatever I could to keep busy and keep my mind off of things, but that was wishful thinking. Not a moment passed where I wasn’t thinking about the surgery. Am I going to be paralyzed? Handicapped? It’s got to hurt when they cut into your head and drill through your skull? Will I even be alive in two months? It’s weird how suddenly you stop preparing or worrying about your future and focus on getting through the next 60 days of your life. For the first time in my life I had to confront the thought of handicap or even death.  

I began to dread going to bed at night. Not only did I feel like sleeping was “wasting precious moments,” but at night, when I would lay in silence, all I could think about was life and my dreaded surgery. Why me? It doesn’t seem fair. I didn’t get a solid night of sleep in over a month, which only added to the misery of the days. In retrospect, I worked myself up way more than I should have.

 

It was now October 6^th, 2004, the night before my surgery. In a weird way, I was relieved that it was finally time. I managed to turn some of my fear into adrenaline and began preparing. I packed and sent some emails. Knowing that they were going to shave some of my hair the next morning, and in a rebellious attempt to feel like I had some control, I went into the bathroom and shaved my own head.

 

October 7^th, 2004   4:30am

 As my alarm screamed, I popped out of bed with no more than an hour or two of sleep. I immediately jumped into the shower. After stalling as much as humanly possible, I finally got out of the shower and got dressed. The car-ride to the hospital was very quiet. So many thoughts were running through my head that I really couldn’t put anything together. Small talk seemed inappropriate, so we just listened to radio. I felt like I was driving to my own funeral.

 

Upon arriving at the hospital a half-hour early, we were whisked directly into the admitting area where we filled out a few forms and I received my hospital bracelet. We were then asked to wait in the “pre-op” waiting room, so we found a seat and settled in. If this was anything like any doctor or hospital I’d ever been to, I’d probably be waiting for a while, so it gave me a few seconds to collect my thoughts. No can do.

 

Within 30 seconds of sitting down, a nurse swung the doors open and said “SCOTT RYAN.” “I GUESS I’M UP,” I said. I walked with the nurse back into the pre-op area.

 

The nurse dropped a gown and some weird looking socks on the bed and said, “CHANGE INTO THESE” and then pulled the curtain closed. Into the butt-less gown I go! The socks were extremely tight and pulled up to my knees. They looked ridiculous and were really tight to prevent blood clots during surgery.

 

After a few minutes the nurse returned and took my vitals. She started some sort of IV. I was freaking out internally but relatively calm on the outside. When she left, I lay there by myself and it all began to hit me. I’m about to have brain surgery and I might never be the same person that I am right now. Hell, this might be my last few moments on this earth. My eyes welled up and I tried to hold it together, but I could feel the tears running down my cheeks.

 

As my family walked up, the look of fear on their faces was evident. I think it became very real to everyone at that particular second. They examined my IV’s, the machines that were beeping behind me, and yes, my new socks. My Doctors began to arrive one by one to say hello. They seemed confident, but rushed. One Doctor asked my wife to make a mark on my left ear with a marker confirming which side the surgery was to take place on. “ARE YOU SERIOUS?” I said, “SHOULDN’T YOU KNOW THIS BY NOW?”

 

They only stayed a minute and then went off to prepare for surgery. Once they left, the nurse returned and started another IV, this is the one that would knock me out. My head was so clouded with thoughts & emotions (and a tumor); I wasn’t quite ready for all of this yet. “WAIT,” I said, “I REALLY NEED TO USE THE BATHROOM.” The nurse didn’t seem to appreciate that, but she and I both knew that she couldn’t really say no. She pointed at the bathroom and said, “RIGHT THERE, JUST BE CAREFUL WITH YOUR IV.” I pulled my butt-less gown together and rolled my little IV stand into the bathroom. This was less about using the bathroom and more about giving myself a minute to get my head straight. After I did my business I remember looking in the mirror and examining my undamaged head which would be cut open in about an hour. I also took a minute to make my peace with God and fire myself up. A deep breath, a glance in the mirror and a fake smile, “LET’S DO IT,” I said, while pumping my fist. I don’t know why I was pumping myself up, but it got rid of some of the fear temporarily. I made my way back to my bed and they continued with the IV. I knew I’d be out at anytime so I looked at my wife and parents and we continued some conversation until apparently I was unconscious.

 

Once I was unconscious, the day was much worse for my loved ones than it was for me. While I slept, they worried. They sat in uncomfortable chairs, watched DVD’s over and over again, and finished Sudoku puzzles. Every so often they would get an update from a nurse as to my condition, “he’s doing fine, they’re about halfway through the procedure,” the nurses would say reassuringly. My wife would pass the news on to everyone else, and they’d continue to try and pass the time, just waiting to hear that I would be ok. Friends and family members would continue to show up throughout the day, bringing food, support and some fresh conversation. 

As my family & friends waited for some information & reassurance, Dr. P emerged from the operating room, now 9 hours since my family last saw him, and his part, the actual tumor removal was done. Dr. L was now in charge of closing my head up.

 

Dr. P seemed happy with the progress, “HE’S DOING WELL,” said Dr. P., “WE WERE ABLE TO REMOVE THE MAJORITY OF THE TUMOR, WE DID LEAVE SOME THAT WAS ENBEDDED IN THE FACIAL NERVE THOUGH, IT WAS TOO RISKY TO TRY TO REMOVE. IT’S LIKE TRYING TO REMOVE A LOLLIPOP FROM A SINGLE PLY OF TISSUE PAPER WITHOUT RIPPING THE PAPER” He estimated that to remove the tumor embedded in my facial nerve during this surgery, there was about a 20% of losing the facial nerve function, if they came back and removed it a second surgery, the chances of losing facial function would go down to around 3%. I had made it clear before the surgery that I wanted them to do whatever was necessary to save my facial nerve, so this was the course of action.

 

They did confirm that this was a benign tumor and Dr. P said that he’d want to wait at least six months before doing a second procedure, so that I could recover. They would use the same incision with a second surgery, but a different approach. The second surgery would be about the same length, but there would be much less risk involved, the dangerous part, specifically the tumor that was embedded in my brain stem had now been removed. Dr. P. then returned to the Operating Room and my family felt confident that I would be OK.

 

Dr. P again emerged from the operating room, this time with Dr. L by his side. Surgery was over. After roughly 10 hours on the operating room table, I was now officially “recovering.” They explained how they were able to remove the majority of the tumor and that they were able to cut off, or at least slow down most of the blood supply to the residual tumor. The vestibular, or balance nerve, was the only one completely severed, but the hearing nerve was severely damaged due to the stickiness/attachment of the tumor. The facial nerve was responding well.

 

In the hours after surgery, I lay in the recovery room, unconscious for a bit longer than usual because of high blood pressure. Sometimes I feel as though I can remember voices during that time. I remember Doctors and nurses shouting words of encouragement, and someone else asking people to leave because my blood pressure was too high. I don’t know if this really happened, but I feel pretty connected to that moment.

 

Later that night, asleep on an uncomfortable couch in the waiting room, the resident Doctor in charge of the ICU awakens my wife. Snapped out of sleep and trying to comprehend what was happening, she focused on the Dr. in front of her.

 

The pressure from the cerebrospinal fluid on my brain became too intense, which caused swelling, or “Hydrocephalus.” The Dr. was waking her to let her know that Dr. P was on his way to insert a tube, or “shunt” into my brain to relieve some of the pressure. They needed her permission to go through with the procedure. “YES, OF COURSE,” she said. Per my wife’s recollection, “that was the single worst moment.”

 

I don’t remember any of this. I was completely out, and thank goodness, because per the medical notes “a small incision was made in the right frontal region and a small twist drill craniectomy was then performed”. So basically, they drilled a hole in my head with a twist drill.

 

It seems like most people remember the moment the wake up from surgery, but I had no idea. On TV people always wake up from brain surgery with their head lightly wrapped and say “honey? I love you” and then engage in some long passionate kiss with their spouse. Well, it’s not like that. At least it wasn’t for me. Sorry Grey’s Anatomy. 

 

For roughly the first six days post op, I was completely unconscious, in an induced coma. I lay motionless in the Intensive Care Unit and what felt like a long night of sleep for me, felt like weeks of intense worry for my family & friends. My wife, parents and in-laws slept in waiting rooms, ate in cafeterias, were on a first name basis with hospital employees, and were determined to be there for whatever news the Doctors had for them.

 

Because of the complications I spent eleven days in Intensive Care and it was there that I became a bit more aware of my surroundings.

 

I really had no concept of day or time, but part of being in Intensive Care is that they wake you up once every hour to check your vitals, so you really get no rest. I remember the nurses constantly waking me up and then saying, “GET SOME REST.” I was doing just fine before they woke me up. I know, I know, just doing their job. I was also lucky enough to come down with Bronchitis while I was in intensive care so they had to do these “breathing treatments” on me and do all of these unpleasant things to make me cough, so that nothing went into my lungs.

 

There were moments where I felt ready to get out of bed, and other moments where I just lay motionless, staring into space. I wasn’t myself and wasn’t totally grasping everything that was happening around me. I lay in that bed for hours, actually, weeks, without standing up once. My muscles were week. Am I paralyzed? Am I even alive?

 

At one point I opened my eyes after sleeping and there was this Filipino priest hovering over me reciting that one prayer “as I walk through the valley of the shadow of death.” In my head I’m thinking, “dammit, I died,” but I didn’t, I guess he just thought that was an appropriate prayer at the time or something. I know it was meant to help, but it scared the shit out of me. Until this day I’ll tell people that “I saw death, and it looks like a tiny Filipino man.”

 

After nearly two weeks in the Intensive Care Unit, I was finally responsive and surviving without a half dozen IV’s in my arms. I was still extremely weak, dizzy and uncoordinated, so it was decided that I should spend some time in the rehabilitation unit before I went home. At this point, all I wanted was to go home. I had planned on a three-day stay, and now there is talk of sending me to the rehabilitation floor for “a week or two.”

 

Up to the rehab floor I go, and I had no clue what that really meant. I figured there would be a bunch of people using those bars on each side of them to walk, you know, like you see in the movies. The whole goal of this floor is get people their independence back so there was much less dependence on nurses here. You get a wheel chair, and the nurses wake you up each morning around six with the bucket of water to wash. You then wheel yourself down to this room for breakfast followed by 3 to 4 hours of therapy per day. The schedule changed each day, but everyday I had Physical, Occupational and Speech Therapy.

 

Physical was all about getting my strength back and relearning to walk. Occupational was more about doing everyday things like brushing your teeth and taking a shower and Speech, besides working on your speech, which gets a little messed up after brain surgery, they also work on memory and reading and things like that. Basically elementary school all over again, but challenging for someone in my boat. In Speech therapy we actually worked on math problems and sang “row, row, row your boat,” yikes!

The therapists asked me in one of my first sessions what I enjoyed doing and I said, “I USE TO PLAY BASKETBALL,” to which they responded, “WELL LET’S START THERE.”

 

They handed me some small beanbags and pulled a large bucket over toward me. It sat no further than 5 feet in front of me and my therapist said “THERE, SHOOT THE BEAN BAG INTO THE BUCKET.” I tried to focus on the bucket, but my vision was just so “off.” And raised my hand, pointed the beanbag and flicked my wrist as I let it go, perfect form. THUD. The beanbag hit the ground about a foot short and two feet wide of the bucket. “What?” I thought to myself? It was so odd for me to be that “off.” I tried again, and again, THUD. Therapists scribbled notes as they watched, a tear ran down my face and I simply said, “THIS IS BRUTAL, WHAT HAPPENED TO ME?”  

 

 

One Broken Dude

 

I think it was at that point that I finally realized that this wasn’t the normal course of action for an Acoustic Neuroma patient. Everything I had read said 4 or 5 days, mild dizziness, facial weakness, but nothing about being disabled. I was barely keeping up physically with stroke victims and amputees. Something wasn’t right, but I’d be damned if I was going to stay like this. “TELL ME WHAT TO DO,” I told the therapists, “I’LL DO ANYTHING, JUST GET ME BACK.”

 

Re-Learning how to Walk

 

I pushed myself as hard as I possibly could, eventually taking steps with a walker and doing the things necessary to go home.

 

On November 1^st, 2004, nearly a month after I walked in to the hospital, I was released to go home. I returned home unable to walk on my own and needing much more therapy, but simply being at home provided me with enough motivation to put the work in. In the beginning of December, nearly two months after my surgery, I took a few steps on my own. Unassisted. Walking to the bathroom and the kitchen on my own was exhilarating. I was actually proud of myself for getting my own drink.

As weeks and months passed by, I could feel myself slowly improving. I shot a basketball, I walked my dog, and I drove my car. Things were coming back. I would guess that I was probably at about 60-to-70% of where I was before my surgery. Not great, but good enough. Things continued to improve with time.

 September 22, 2005

 It’s my 30^th birthday, and a week before the one-year anniversary of my surgery; my wife told me that she was pregnant. At that moment, for the first time in over a year, my mind was clear, I was happy. We were happy, healthy and starting a family.

 A month later I went for a follow up appointment. Dr. P, clipped my MRI films to the light box, I could see the bright white piece of tumor that was left behind. He examined it and explained that while there had been no growth, it was still enough that they wanted to get it out. The location made it nearly impossible to radiate so I would have to have a second, or “stage-2,” brain surgery. I had known that this was a possibility but wasn’t prepared for this news at all. I thought I had already “done my time.” This is ridiculous. Just the thought of everything I had been through in the past year, and now I have to start over and do it all again?

 I asked what would happen if I didn’t have the surgery and the doctors all told me that it could get severe like it was before, with the tumor embedded in my brain stem. That’s when you start to talk about life and death again.

Then the other factors started to weigh in. My wife and I have a baby on the way, we now know that it’s a little girl. I can’t be selfish here; I need to be here for my wife and daughter. The Doctors wanted to schedule my surgery sometime in May; our daughter was due sometime in May. “EARLIER,” I said, “LET’S GET THIS OVER WITH.” I wanted to have time to recover so that I could be there for the birth of my daughter. I didn’t want to miss out on that stuff. I wanted to drive my wife to the hospital. Dr. L said that’s the first time any of his patients wanted to “move up” their surgery date. We scheduled the surgery for February 1^st, 2006.

Preparing for a second surgery was actually a little easier than the first one, only because now, I knew what to expect. In my case the fear came from the complications that I had the first time around. I walked into that hospital at 6am the man I had become in 29 years, and walked out a month later a completely different person. What would I become this time around?

 

I’ve learned that the hardest emotion to overcome is frustration. I tried to have a positive outlook as much as possible, but as a patient, a patient that feels extremely beaten down; you’re just kind of waiting for the next thing to happen. Instead of some positive mantra like “this too shall pass,” I began to use “now what?” every time a new “issue” presented itself. To say that I felt “defeated” was an understatement. I felt not only defeated, but also defeated in a game that just wouldn’t seem to end. You can probably tell by now that I’m not a “glass half-full” type of guy. I had totally psyched myself out by this point.

 

The saving grace for me was the thought of having this all behind me after surgery number two. I looked forward to moving on with my wife and daughter and doing things that most 30-year olds do. My wife was now 5 months pregnant and my daughter provided an excellent distraction for me. We were so wrapped up in baby preparation that the wait for my surgery really flew by. Before I knew it, my surgery was only a week away.

 

Now, on the eve of my second surgery I went through my “Brain Surgery Routine.” How sad is it that I have a “routine” for brain surgery? But I did. I shaved my head, took a long shower, had some mint chip ice cream and a big bottle of water.  

February 1^st, 2006       5:00am

 

We arrived at the hospital and I jumped out of the car. It was chilly but I was really taking in the fresh air. We got to the front doors of the hospital and I stopped. Everyone else entered before me and I stood there. “ONE SECOND,” as I walked around taking deep breathes of fresh air, “OK, I’M READY.”

 

Everyone sat in the lobby of “admitting” and I paced back and forth. I kept walking over to the windows and looking outside. I couldn’t help but wonder if this was it for me. I couldn’t find any positive thoughts in my head. It felt bad. It felt scary. I couldn’t sit still. After about 10 minutes they called me into admitting to complete some paperwork and I felt like a veteran. Nothing had to be explained to me.

 

We walked up to the pre-op area and I took in everything that I had remembered from my prior stay in the hospital. “There’s where we slept,” said my wife as she pointed to a small waiting room. I entered pre-op and again, without delay, they were ready for me. “SCOTT? GOOD, WE’VE BEEN WAITING FOR YOU.”

 

I walked with the nurse through the doors and down the long aisle between rows of beds. I wasn’t nervous, I was SCARED.” I’m a 30 year old, 6’4 250 pound man and I was sweating and shaking. I could burst into tears at any moment. The nurse directed me to my bed, or as I referred to it, my “death bed,” and there was my awesome hospital attire.

 

I felt sick as I slid the tight stockings over my legs; vivid memories of lying barely conscious clinging to life were exploding in my head. This was all too fresh in my mind. This was too soon. This just wasn’t right.

 

I tied my hospital gown and lay back on the bed. I was alone. I started to cry. “29 of the 30 years were awesome,” I thought. The nurse pulled the curtain back to start my IV. “WAIT!” I said, “I NEED TO USE THE RESTROOM” Sound familiar? I knew that I couldn’t go into this nervous. I had to be stronger. I snickered as I walked to the restroom knowing that this was “my way” of doing things. I did have some control. I did my business, said “hey God, me again, we met here a few years ago,” and then stared at myself in the mirror. The fear turned to anger “THEY HAVEN’T KILLED ME YET” I said, “I’LL BE DAMNED IF THEY DO IT TODAY.” One more deep breath … “LET’S DO THIS.” I slammed a balled up paper towel into the trash can and stormed out of the bathroom.

 

I marched over to my bed and said to the nurse “HERE” as I stuck out my arm. I wasn’t shaking anymore. I was mad. My Doctors showed up to say hello. “THIS IS YOUR LAST CHANCE” I said, “I’M NOT LETTING YOU IN THERE ANYMORE AFTER THIS.” They laughed and said they didn’t want to go in ever again, and then shook my hand, “STEADY HANDS DOC” I said as they walked away laughing.

 

After they walked away I was alone. The anger and humor didn’t last very long. I looked at the machines behind me and at the IV entering my vein. I was scared again.

 

One by one my family came around the corner. I smiled with tears in my eye. They just kept saying “THIS IS THE WORST PART.” We all cried and said what we needed to say. A few surgical nurses came over and introduced themselves. “WE’LL BE TAKING YOU BACK,” and they dropped the arms of the bed. “NOW?” I asked, “I’M STILL AWAKE!” They were very nice and gave me a minute to say goodbye to my family, then they rolled me back toward the Operating Room. I noticed windows to the outside, a bright hallway, and the two young nurses who were asking about my wife and baby.

 

Suddenly, I was in the operating room with a lot of Doctors and nurses standing around me or working on things in other parts of the room. They all introduced themselves. I looked at the anesthesiologist and said, “AM I SUPPOSE TO BE AWAKE? I DON’T REMEMBER ANY OF THIS LAST TIME I HAD BRAIN SURGERY.” He laughed and that’s the last thing I remember.

 

Surgery itself, for the patient, is like sleeping, only without dreams. You’re knocked out, you wake up; and it’s over. You have no recollection of the hours of intense surgery in between that time.

 

This, my second surgery, went a bit more smoothly, I started to hear voices, never opening my eyes, but I could hear my wife’s voice vividly “IT’S OVER” she said, “YOU’RE SURGERY IS OVER AND YOU’RE DOING GREAT SCOTT,” said Dr. L. “CAN YOU SMILE?” I must have smiled because I heard my mom say “ALRIGHT!”

 

The only bad news was that some of the tumor was so embedded in my facial nerve, that they couldn’t remove it. At this point it was just “something that we’d have to watch.”

 

I started to open my eyes and focus. My wife kept talking to me about how it went and how happy the Doctor’s were. I remember a nurse standing over me asking if I could hear her, my response … “W-A-T-E-R.” I was completely parched: as thirsty as I’ve ever been in my life. She scooped a tiny ice chip from a small Styrofoam cup and put it on my tongue. It melted immediately, but felt great. “M-O-R-E,” I requested.

 

After a few hours I began to become aware of my surroundings. I noticed a television, and my wife continued to tell me about everything that had happened that day. I just listened. My voice was much too weak to speak, but I was already miles ahead of where I was after my first surgery. I was awake, responsive, and even a little hungry.

 

As the sun rises and light shines through the small window in my room, they began to remove things from me. First, a few monitors, then a few IV’s, a catheter, and a few more tubes that were coming from my arm and abdomen. They adjusted my bed to a sitting position and asked if I’d like to try to stand “HELL YEAH” I said.

 

I slowly leaned forward and stood as my wife and nurse held each side of me for balance. “HOW DOES THAT FEEL?” the nurse asked. I just smiled. Less than 24 hours after brain surgery I was on my feet. I sat back down to rest and spoke with my wife and parents. I hate to say that I felt “good,” but “relieved” might be a better word. It was over. Now I just needed to get home. I had done this before, so I knew the game. I knew I had to walk the halls, eat solid food and poop before they’d ever let me go. No problem.

 

On day two a physical therapist entered my room and asked if I’d like to try to walk, “LET’S DO IT,” I said. She helped me to slowly stand and shuffle my feet across the room “GOOD” she said, “AS LONG AS YOU HAVE SOMEONE WITH YOU, YOU CAN WALK AS MUCH AS YOU WANT.” By now I was already eating and family members were rotating turns escorting me slowly down the hallway. I continually walked by the nurse’s station so that they would notice me and put it in my charts. WALK? CHECK! EAT? CHECK! POOP? CHECK! Get me out of here.

 

By the evening of day two, I was asking when I could leave. “YOU JUST HAD BRAIN SURGERY SCOTT, IF THINGS CONTINUE TO GO WELL, YOU’LL BE HOME IN A FEW DAYS.” “NOT GOOD ENOUGH,” I thought. Why stay? “I CAN’T GET ANY REST HERE,” I told my doctor. “BETWEEN THE NURSES, MY ROOMMATE, THE CLEANING FOLKS …” Dr. L shook his head in agreement, “I KNOW, LET’S SEE HOW YOU FEEL TOMORROW.” That night I was already sick of being a 6’4 man in a 5’4 hospital bed, so I walked out and sat in the waiting room with my family.

 

Imagine, a grown man in a hospital gown, knee-high tight socks and a head wrap, walking in and sitting in the middle of the waiting room, “MUCH BETTER” I said as I sat in the chair. People just stared at me as if to ask “SHOULD YOU BE HERE?”

 

On the morning of day three, Dr. L notified me that I was ok to go home. “YOU’VE DONE YOUR TIME IN THIS PLACE,” he said.

 

Upon returning home, I felt as if the weight of the world had just slid off of my shoulders. I was done. It was over. Finally! For the first few days and nights at home, I suffered from headaches and a severe lack of mobility. I spent the days on the couch trying to sleep. And at night, I couldn’t yet battle the stairs, so I slept on the same couch. I use the term “sleep” very loosely, because when you sleep all day, you’re really not that tired at night. That, and the headaches and pain from the incision kept me on my toes. I could take two pain pills every 4-6 hours, so as the 4^th hour approached, I was waiting in the kitchen with Tylenol in one hand and a bottle of water in the other. This cycle repeated every 4 hours for about 2 days. Then, starting to feel like a drug addict, I scaled back, a few in the morning and a few with dinner. By the end of the week, the pain had subsided and I didn’t need to keep shoving these pain pills down my throat.

 

 

My incision after surgery #2

 

Fast forward to May 2, 2007. A routine MRI and follow up appointment show no growth of the residual tumor, to which I am relieved, but both Dr. P and Dr. L notice that there is blood flow to the tumor and are quite confident it will grow again in my lifetime, “99% confident,” they say.

 

They both agree recommend Gamma Knife radiation to “finish the tumor off.” I’m hesitant, Very hesitant. I’m so hesitant that at first I decline treatment. “IF IT AIN’T BROKE, DON’T FIX IT,” I say, referring to my non-growing tumor.

 

Dr. P sits in front of me and explains the recommended treatment …

 

“FOR THE FIRST TIME IN THREE YEARS WE ARE NOW IN CONTROL. THE TUMOR IS ON ITS HEALS. THIS WOULD BE A GOOD TIME TO TAKE ADVANTAGE AND KNOCK IT OUT FOR GOOD.”

 

“LOOK AT THIS IS A BATTLE,” he said. “THIS TUMOR WAS WINNING THE BATTLE TWO YEARS AGO, THROUGH THE FIRST SURGERY WE FOUGHT BACK, THEN WITH THE SECOND SURGERY WE STARTED TO CONTROL THE BATTLE. NOW THE TUMOR IS ON ITS HEELS AND RETREATING, WE CAN LAY LOW AND GIVE IT A CHANCE TO REGROUP (find a blood supply and begin growing) OR WE CAN ATTACK IT WHILE ITS DOWN AND TRY TO END THIS THING.”

 

I don’t know if it was the battle analogy or something else, but it made way too much sense. On one hand, I could let it be and cling to the low percentage of “hope” that it would never grow again, or I could go through with the radiation and really knock it out. With radiation, I was told that the percentages are now in favor of it not growing anymore instead of the other way around.

 

The thought of “watching and waiting” was appealing from the standpoint of being left alone for another six months. As I previously stated, I’ve felt as if I “paid my dues” and “done my time,” so I shouldn’t have to go through anymore. The downside to “watching and waiting” is the “waiting” part, which, for me, seemed unimaginable.

 

I came to the realization that I couldn’t walk around, day after day, wondering when the tumor was finally going to find that blood supply that it so craves. The decision became extremely difficult and I asked Dr. P for a few days to make a decision. “TAKE A WEEK, OR MORE,” he said. “IT’S NOT A RUSH, JUST BE CONFIDENT WITH WHATEVER DECISION YOU MAKE.”

 

As difficult as it was to admit, I knew what I had to do. After mulling over my decision for close to a week I picked up the phone, called Dr. P’s office and said it. “HI THIS IS SCOTT RYAN, I NEED TO SCHEDULE GAMMA KNIFE RADIATION.” That was my moment of commitment. I wasn’t going to allow myself to change my mind now. I started to justify my decision to everyone, including myself. “I HAVE TO KNOCK THIS BASTARD OUT,” I said, “I CAN’T JUST WAIT AROUND FOR IT TO PUNCH ME AGAIN, I’VE BEEN BEAT UP ENOUGH.”

 

I scheduled an appointment with a Radiation Oncologist, Dr. G. She explained the procedure in full detail and scheduled a date, July 17, 2007.

 

Dr G. made this procedure sound simple compared to the two microsurgeries I had already endured. The one part that I feared was having a Titanium Head Frame “fastened to my head.” Outside of the head frame, my only anxiousness came from the uncertainty after the procedure. “HOW WILL I KNOW IF IT WORKED?” I asked. “IF YOUR BRAIN TUMOR Doesn’t EVER GROW AGAIN, IT WORKED.” Dr G. said with a smile.

 

The eve of my treatment approached and everything already seems so much easier than in the past. I didn’t have to pack a bag to stay at the hospital, no arrangements had to made for things to get done at the house, and above all, barring any tragedies, I didn’t have to prepare to die this time around. That’s always a bonus.

 

Accompanying me to my treatment would be my wife and mom. Others offered, but it just didn’t seem necessary to have too many people there. We sent our now 14-month old daughter off to Grandma’s house for the next 24-hours. I couldn’t help but recall the feeling I had before my second surgery when all I wanted was a chance to meet my (then unborn) daughter. Now I’m kissing this beautiful little girl goodbye, for the night, and hoping that this treatment will allow me to be around for all of the major events in her life. This was truly a chance to move on.

Why do all medical procedures have to begin at 6am? Maybe it’s so that you’re so tired all day that it helps you relax, I don’t know, but with the hospital about 45 minutes away, we left at 5am. Arriving we walked into a quiet hospital and actually showed up to the treatment center before anyone else. We waited in the hallway for a few minutes, some nerves creeping in, and I took that opportunity to start my routine.

 

Since this wasn’t the typical brain surgery that I had grown accustomed to, there probably wouldn’t be a pre-op area like I had the first two times. With that, I excused myself from the hallway to make my annual pre-brain treatment bathroom pep rally. I excused myself to the bathroom, looked in the mirror and tried to fire myself up, but this time, I really wasn’t that nervous to begin with. I was probably more tired than nervous. I splashed some water in my face, looked in the mirror and talked to the mass in my head …

 

“THIS IS IT YOU SON OF A BITCH, YOU’RE DONE.”

 

Yes, I’m weird. But I guess you can say I’ve grown pretty close to this thing over the years. I walked back toward the treatment center where a nurse was waiting for me. “SCOTT? COME ON BACK.”

 

The treatment center, resembling any doctor’s office you’ve ever been to, was pretty quiet and I went to a room and sat down. The nurse took my vitals and gave me some pills to help me “relax.” I didn’t feel nervous, but I was ready to get this over with. After starting an IV, my family came back to sit with me. I knew the next thing was the dreaded head frame.

 

After about 15 minutes, the nurse popped back in and, “ARE YOU READY?” I just stood up and walked with her, “LET’S DO THIS.” I walked down the hall and sat down in a separate office. The chair positioned right in the middle of the office. I noticed the frame sitting on the table behind the chair and looked away as soon as I saw it. I sat down and was immediately surrounded by Dr. P, Dr. G, three nurses and a Physicist. Dr. P looked me square in the eyes and said, “I’M GOING TO TELL YOU EVERYTHING THAT WE’RE GOING TO DO,” and then held the frame over my head. “YOU’RE GOING TO FEEL A LOT OF PRESSURE IN YOUR EARS,” he said as he started tightening two bars, one on each side of the frame that sat in my ears. “THIS IS JUST TO HOLD THE FRAME IN POSITION WHILE WE SECURE IT.”

 

As they tightened these bars I began to feel pressure in my ears, but I expected that. What I didn’t expect was how much pressure there was. They tightened, tightened, and then tightened some more. Just when I thought my head could not possible be squeezed any more, they continued to tighten. My head felt like it was in a vice, and this seemed like some sort of inhumane treatment. I closed my eyes and bit my lip, knowing I couldn’t really do anything about what was happening. “YOU HAVE TO BREATHE SCOTT,” said the Physicist. She walked towards me and offered her hands. “SQUEEZE MY HANDS AS HARD AS YOU NEED TO, YOU’RE DOING GREAT.”

 

I accepted her offer, squeezing the hands of the poor, wonderfully generous women. “OK SCOTT, WE’RE GOING TO NUMB UP A FEW SPOTS ON YOUR HEAD,” said Dr. P, “YOU’LL FEEL A LITTLE STICK.” Still the pressure in my ears was nearly unbearable, I felt a pinprick, and then another, and two more. Almost immediately I felt the pins or screws or whatever it is that they use going into the frame. Not yet into my head, but I could hear and somewhat see Dr P. using a screwdriver to tighten these screws into the frame. “WE’RE ALMOST DONE, HANG IN THERE.”

 

There were about six medical professionals in the room and at this time they were all shouting words of encouragement, “YOU’RE DOING GREAT,” said one nurse, “IT’S ALMOST OVER” said another, “REMEMBER TO BREATHE,” said the physicist who stood in front of me offering her hands. “OK SCOTT, WE JUST NEED TO SECURE THE FRAME,” shouted Dr. P. As he turned the screwdriver I began to feel the pressure of the screws going into my head. My skin had now numbed for the most part, but I could still feel and hear, which was crazy, this titanium screw going into my head. I closed my eyes tightly, held my breath and waited. “Grin and bear it,” I think they say?

 

The Doctors worked quickly. As I noticed the discomfort of the first screw going in, they were already finishing up the second. The pressure in the ears was becoming more unbearable by the second. I could feel sweat beading on my forehead. “BREATHE SCOTT,” I took a deep breath and opened my eyes to see Dr. P just to the right of me turning a screwdriver toward my forehead. I didn’t feel as much with the front screws as I did the back, but felt an odd dripping sensation so I opened my eyes again as the physicist was wiping blood from my face. At that point I came to the realization that these people were screwing holes in my head, I wanted to panic, but knew that it would only make things worse.

 

“ONE MORE,” said Dr. G. I took a deep breath and looked at the Physicist, “THANK YOU,” I said to her. “YOU’VE DONE GREAT,” to which I responded “INSIDE I’M CRYING LIKE A BABY RIGHT NOW.”

 

Suddenly, the voices in the room became clearer, as they began loosening these bars from my ears; the pressure was relieved with each turn. They pulled the bars from my ears and the frame sat secure on my head. It was on.

 

I sat for a second, searching for pain; there was none. I just had a titanium frame screwed into my head and I wasn’t in any pain. Once those positioning bars were loosened from my ears, it was such a relief that any other pain I may have had just disappeared. I felt fine and thanked everyone in the room. I stood up and sat immediately back down into a wheelchair that they had pulled into the room.

Gamma Knife head frame

 

The nurse wheeled me back to the room where my family was and they walked over anticipating my misery. “I’M FINE,” I said. “IT WASN’T FUN, BUT I’M FINE.” “WE’RE GOING TO DO A MRI AND A CT SCAN,” the nurse told my family. “IT SHOULD TAKE ABOUT 45 MINUTES.”

 

She wheeled me down the hall and up an elevator, as we passed folks in the hall, they noticed me and looked away so as not to stare. We rolled into the MRI suite and Dr. P, Dr. G and the Physicist were already sitting in there, chatting and working on imaging computers.

 

Having had many MRI’s in the past, I knew what to expect, I closed my eyes, slid into the MRI and before I knew it, I was done. “PERFECT,” said the nurse. “NOW WE’LL DO A QUICK CT SCAN AND YOU’LL BE DONE WITH THIS PART.” She wasn’t kidding when she said “quick.” The laid me down on the bed and secured my head, just like the MRI, The CT scan itself only took about 5 minutes total.

 

With the scans complete, I was wheeled back down to the waiting room where I sat with my wife and mom and relaxed for a few hours. I watched TV, read the newspaper, had some snacks and carried on some conversation. During this time, the doctor’s, I assume, were coming up with their radiation game plan. I was told that they take the scans, map out the location of the tumor, and then decide where, and how many times to hit the tumor with radiation. While they were working on killing this tumor and saving my life, I was eating Doritos and watching E!

As the time passed, I began to think about my three-year journey and how I had hoped that this would be the very end of it. My plan was to walk back to this Gamma Knife Radiation machine, lie down, and say adios to my tumor. I don’t ever plan to look back once this is over. I’ll know that I’ve done everything in my power to overcome this gigantic boulder in the road that is my life.

 

“THEY’RE READY FOR YOU.” The time was here. For three years I’ve been trying to kill this tumor and within minutes, it may finally be over. The nurse notified me that they be giving me seven shots of radiation using two different helmets.

 

The machine itself felt similar to an MRI machine. It was tight and dark. When an MRI begins, it is very loud. I lay there waiting for this to begin and there was nothing. I closed my eyes, waiting with anticipation. After about 5 minutes, I opened my eyes. I was still deep in this machine, the roof of the machine was just inches from my face. Nothing was happening. I was in somewhat of an uncomfortable position. When the frame was secured to the machine, it left my head and back in an awkward position. I considered pushing the emergency button to let them know that nothing was happening.

 

Within seconds something startled me; it was a bell chiming. That meant that the first shot of radiation was complete. Seriously? I didn’t hear, see or feel a thing. I’m lying here in a quiet machine, with no sound or movement and you’re telling me that radiation has been attacking my brain for the last 5 minutes? I was amazed to say the least and realized that while I was thinking about it, the second dose was doing the exact same thing. Minutes later, another bell chimed. Knowing now how simple and painless this was, I closed my eyes and relaxed, waking myself here and there with a snore.

 

After a bit of sleep, the chiming bell woke me again and I felt the bed moving forward and suddenly, there was light. I had slid out of the machine and the nurse and physicist had re-entered the room. “ALMOST DONE, WE JUST NEED TO CHANGE THE HELMET.” They unhooked me from the machine and helped me to sit up, which felt great considering the weird position I had been lying in. They explained to me that I had just completed six shots of radiation and we had one more to go using a different helmet that “SHOULD ONLY TAKE ABOUT 5 MINUTES.”

 

I lay back down and they secure the frame back to the bed. Dr. G walked into the room and asked how I was doing, “I’M GREAT AS LONG AS YOU GUYS ARE IN THERE KILLING THIS TUMOR.” She smiled and walked away with the others. Leaving me for one last shot. I slid back into the machine and stayed awake for this one. I wanted to be awake when we finally finished this thing off. As I lay there, I simply said (to myself), “LATER DUDE,” again talking to the tumor.

 

The bell chimed for one last time and the bed slid out of the machine. I did it. I sat up and scooted over to the wheelchair. “LET’S GET THAT FRAME OFF OF YOUR HEAD,” said the nurse.

 

We went back to the room where hours before I had the head frame put on, and the nurse simply unscrewed it and pulled it off. It was painless. She put a few small band-aids on my forehead and wheeled me back to my family. “HANG OUT FOR ABOUT AN HOUR, AND THEN I CAN LET YOU GO HOME,” she said.

 

“THAT WAS EASY,” I said to my family. We sat and watched TV for the next hour until they released me to go home. Before I left, Dr. P stopped by to see how I was feeling. “NOT THAT BAD, HUH?” he asked. “A BIT EASIER THAN SURGERY,” I joked back. “I KNOW NOTHING IS EVER CERTAIN, BUT CAN I ASSUME NOW THAT I’M DONE?” He smiled and said, “TIME WILL TELL, BUT I CERTAINLY THINK THAT SHOULD DO IT.”

 

That was enough for me. Dr. P, the aggressive brain surgeon who always seemed to be recommending and keeping the door open for more treatment has finally said there’s no need for further treatment at this time.

 

Much of what I feared, and thought I could never overcome, I did. In many ways, the fear and anxiety of such treatments is far worse than the actual treatment itself. The “fear of the unknown” is inescapable. People urge you to keep a positive attitude though any trials or tribulations in your life, but honestly, that’s not easy to do. For those who can have a positive outlook about everything, God bless them, but I’m just not built that way.

 

I believe the worst part of any illness, surgery or treatment is the pressure, anxiety and fear that you bring upon yourself. I’ve spent months worrying over the last few years about things that were out of my control. Things that honestly were nowhere near as bad as I thought they might be.

 

Modern medicine is truly amazing. Through two brain surgeries and radiation, I was rarely in any pain.

 

The treatments themselves are the most traumatic part, but recovery is the most difficult. Getting back to the person you once were and even worse, accepting that you may never be that person again can be a hard pill to swallow.

 

The solace comes from knowing that you’ve faced a difficult unfortunate circumstance head on and regardless of the outcome, you fought it. You didn’t simply let the fear paralyze you and the tumor continue to attack.

 

After going through something like this, you have a new perspective on life. You appreciate little things. In many ways, I even appreciate that through this tumor, I have learned a lot about life and I understand the importance in the simplest of things.

My family in Las Vegas, 2007

 

It’s been roughly four years since I was first diagnosed and had my first brain surgery. A lot has changed in these last four years. When I think back to 2004, I was in full panic mode. I was basically preparing to die. I was full of fear and negativity. It seems like such a blur, and for that, I’m thankful.

 

When a person that is newly diagnosed asks me for advice, I often say, “grin and bear it,” which seems harsh, but this isn’t an easy thing to go through. It’s not fun, it’s not painless, and while you’re in that place, you want nothing more than to get out of it. But it’s the card you’ve been dealt, so play it. What choice do you have? I had to tell myself over and over again to “suck it up” and remain strong.

 

I urge anyone that is newly diagnosed to be stronger than I was. I let the fear take over and spent months feeling sorry for myself. Let me tell you, that it’s no way to live. Face this challenge head on, and then move on. Brain tumors suck, but sometimes looking inside you’re your head and yourself can be a very positive thing.