Officially my battle began December 17th, 2012. I was 2 months short of my 28th birthday when I had a baseball sized tumor removed from my brain in the frontal left lobe. The tumor turned out to be the worst form of brain cancer around- Grade iV Astrocytoma or GBM. Unofficially my battle began more than 8 months prior to my surgery in a fantastic and eventful course of events.
The first question everybody always asks me is, “What made you originally think you might have a tumor?” Well the answer is what turned out to be 8 or so months of denial, frustration, and mental uncertainty. I have always fancied myself semi-intelligent. I am in no means a genius, but I think I can say I am a little above average on the intellectual meter. At first I noticed very small things like sometimes I would be walking and just lose my train of thought. It was so mild at first that sometimes I couldn’t even be sure if I really lost my train of thought or if I just wasn’t thinking of anything at the time or if I thought the same thing along and often ended up just confusing myself even more kind of like what I probably just did to you. The first real episode I can say where I actually was 100% sure that something was going on was while I was playing a game on my phone. Long story short, I threw a grenade in this game and once you throw the grenade there is a moment where it kind of just hovers before it explodes and in those few seconds I had absolutely no idea what was going to happen next. I threw the grenade and couldn’t remember or figure out what should come from this action. I had been playing this game for a couple months and was well beyond beginner stages of trying to figure out the rules. At that moment I really didn’t put much more thought into it other than, “that was weird, I don’t think that was normal,” and back to my day I went.
As weeks and months went on there were a couple instances at work where I got lost in a conversation and had to try and re-figure out what the conversation was about so I didn’t look like a fool. As the months went by though, I started finding that I wasn’t feeling as smart as I was before. Math problems I used to be able to do in my head, were now having to be written out counting large numbers and keeping track of units became harder and harder. I also slowly began getting small dull headaches always in the same area, nothing two advil wouldn’t fix in a matter of minutes. I still never thought anything of it and being the naive 27 year old male that I was I never even considered going to the doctor, besides I didn’t have insurance so it wasn’t even an option.
August 2012 comes along and I finally land a decent job with insurance benefits, decent pay and more of an ‘office’ setting and less manual labor. I was getting onto a career path with potential to move and grow within a company, bought a new car, and was starting to finally feel like I was on track with my life. Everything was looking up and up and then one day… It was the next month and my girlfriend’s birthday. I took her to dinner on the beach and we were outside of the restaurant reading the menu waiting for our table and I experienced my first seizure. It wasn’t a grand mal seizure, but I got caught in a mental loop. I was reading the same line of the menu over and over again for about a minute. I could not figure out what I was reading and nothing really made sense. I would have probably carried on that way for a while longer had Natashia not elbowed me and inquired as to why I had the most absurd and blank expression on my face while reading the menu. I responded with “That was weird,” and pretended like nothing happened. All through dinner I kept replaying the scenario in every way I possibly could and I could not make sense of it. It was almost like my brain was an old record with a scratch on it and i would get to that one point and just start over again.
Even after this first episode, which at the time I just chalked up to a new allergy pill I had started that day added with an empty stomach and I still didn’t go to the doctor. It wasn’t until a week or two later when I woke up in my own bedroom, a room I had slept in no less than 20,000 times before and had absolutely no idea where I was that I decided maybe I should go to the doctor. Tasha’s birthday dinner was in September, I had just started a new job at an engineering company in August and my insurance kicked in the first day of October so now I had no excuse not to go. The episode of waking in my room without a clue as to my whereabouts actually scared me and I began doing some research. Through my own interweb research I came to the conclusion that I was suffering from one of two things: A) I am going crazy or B) I have a tumor in my brain. I knew for sure that there was something wrong and when the headaches began turning up daily and my shaky hands began to become more frequent I was 99.2% sure it was a tumor. Turned out I was right, thank God? So the next day I called the doctor and scheduled the appointment saying only that I wanted to have a check-up and physical since I hadn’t been to the doctor in a couple years; I figured it was easier than saying I have a brain tumor.
A few days later I have my appointment with my primary care doctor for a ‘physical,’ she checks my vision, listens to my heart and breathing, the whole 9 yards. After the appointment she confirms what I already knew, (that I was in perfect shape and no medical issues what so ever) but before I leave I say “Oh and by the way… There have been a couple random things, I am sure it is nothing, but wanted to get your opinion.” I tell her the stories and she looks at me in an odd “why did you not start the appointment out with this information” type of way. She says she needs to order a CT scan to rule stuff out and action from there. Three days later on a Friday in mid October I have my first of what has now been over a dozen brain scans.
The CT scan was done on a Friday after work. I remember going to happy hour with a few of my co-workers right after work. I told them I could only stay for a beer because I had a CT scan. Most gave me shit and said I was being paranoid and I should stay, but they understood, (good thing I didn’t give in to peer pressure!) So I drive to the hospital, go in and do my first ever CT scan. Super fast and painless, basically a longer X-ray of your head. I finish and I hear the loud voice of the gentlemen who brought me in say, “Ok were all done.” over the loud speaker and he enters the room.
Before when I met him, our conversation consisted of him asking my name and date of birth then his instructions, nothing more nothing less. Upon my exit he seemed much more friendly and interested in me. He said, “Easy, right?” And then inquired as to whether I have been having headaches or not? In my head I contemplated stating the obvious, but I simply said, “Yea, just some small ones.” To which he gestures to his left temple and says, “Around this area?” For a second my heart stopped. In that one sentence he confirmed what I already knew. I muttered a yea and I think it came out more like uh. ”Well I can’t say anything about the scan, but your doctor should give you a call in a few days.” Fuck you sir, fuck you. Now I get to spend my last “tumor free” weekend trying to wonder what the hell he saw.
Monday morning rolls around and I get a voicemail at work asking me to call back, but it was not a nurse or a scheduler calling me- it was my actual doctor and her tone did not sound like it was going to be good news. I excused myself from the office already knowing what the news was going to be. I went to the far back area in our parking lot away from any cars or people and found a little tree with some shade and sat down to make what would be the hardest phone call I have had to make since calling my dad to tell him my mom passed away.
“Hi I am returning a call for Dr. Tang.”
“Oh she is in with a patient now, I can take your name and a message and have her call you at her earliest convenience.” I remember it like it was yesterday, the way her tone immediately changed when I told her my name.
“Yea, please tell her John Ryan Coffelt is returning her call.”
“Mr. Coffelt? Oh um, please hold the line for one minute.” This is when my already sense of impending bad news was confirmed.
About a minute later I hear my doctors voice on the other end in what became a daze of a conversation.
“A large mass… Your brain… Golf ball… MRI… Neurologist… Could be cancer… Go to the emergency room…” I listened to her giving me instruction after instruction trying to follow her words like a young child trying to follow along in an adult conversation and good thing I brought pen and paper because I had to write down a lot of phone numbers.
After what seemed like an hour, but was most likely only about 5 minutes I hung up my phone and laid on the hot cement. I remember it was October, but there was a decent heat wave and the temperature was already around 80 degrees and it was only around 10am. I don’t know how long I laid there, but I didn’t know what else to do. I closed my eyes and all I could do was hear her words over and over again. “You have a large mass in your brain and I don’t know what it is. It could be cancer, but I need you to go have a neurologist look at it now. Go admit yourself into the ER and have an emergency MRI done, I will be waiting on the results. I will stay as late as I need to.” There were many other instructions, but those words would not stop the repetitive loop I was introduced to in my first seizure. My legs didn’t even feel like they would work if I tried to stand at that point even if I tried… So I didn’t bother. After about 20 minutes I realized I was still at work and I am pretty sure people will start to wonder where I left to so abruptly and I returned to my office. At the time I was sharing an office with two other people and I sat down and the second I sat down they could tell I had gotten bad news.
They inquired and I couldn’t even verbalize the news that I was just told. I think it came out something like, “Tumor? I go now? ER. um?” Once I broke the news to my boss I let my heart rate go down a bit and left.
I do not recall driving home AT ALL and in retrospect should not have drove home. I just wanted to flee and was not willing to wait a single second. I got home and started making my calls. First call was to my dad, haha that was a good one. “So, um.. I.. Um.. well.. Yea…” To which he replied, “What????” “I have a tumor in my brain dad, it’s about the size of a golf ball,” (which ended up being closer to the size of a baseball.) The silence on the other end spoke volumes. He said he was on his way home and would be there as soon his car would get him there. Then my sisters, then my girlfriend. Over and over I had to say out loud what was impossible to say and even harder for them to hear.
When I was 12 years old my parents got a divorce. It was pretty much out of nowhere and we were all exceptionally close as a family. I thought we were all happy, but I was also young and didn’t know too much about life or love. My mother sat me down and told me the news and I was broken. I was old enough to take the news without getting super emotional, but I did immediately retreat to my bedroom and fall asleep for who knows how long. When I woke up, I was 100% for sure certain that without a doubt what had just happened was all a dream. I remember thinking “Holy shit, that was the most vivid dream I have ever had, and I am so glad it was just a dream.” It was around dinner time and I walked out of my room and saw my mom at the kitchen table and my dad nowhere to be found and seeing my moms face that second I realized the actuality of the situation. Waking up the next day after finding out I had a tumor I had that same feeling. For the first minute upon my waking I was certain that it was just a dream, but then I looked at my desk and saw a barrage of phone numbers, appointments, notes and names and my reality became cemented. I have something growing in my head and my life will NEVER be the same again.
Since my new found life began it has been like a tumultuous array of awesome highs and predictable and inevitable lows. I’ve gone through chemo, radiation, 6.2 million doctors visits, 3 ER trips, about 40 or 50 blood withdraws, countless IV’s, I think ~8 MRI’s, 1 Functional MRI, all the side effects to go with it and more emotions than I ever knew existed. But I wouldn’t change it for anything. My battle set me on course to actually make something of my life. I woke up constantly wanting more for myself and feeling like I was wasting my life not truly being happy. When I got the worst news anyone could possibly get, I kinda had a sigh of relief. I finally had the motivation and no more excuses to start doing what I really wanted to do with my life weather it was for a year or for 60 years. Most people despise their cancer, I on the other hand have to thank my cancer. I like to think of it as my mom elbowing me in the head telling me to get on the right path, she could have done it in a less severe way, but I am not sure I would have got the picture had it not been so serious. So thank you cancer, I will wage war upon you until my death, but I respect you for what you did for me.
”FEAR IS FAKE LIVE NOW.” Ryan Coffelt