Seizures n things

     I had a lot of plans for 2016 ---- mostly adult-oriented. My career was looking up as I have recently been promoted to a full-time professor at work and my nonprofit organization is running more smoothly these days. I was celebrating a happy year in a great relationship with a wonderful person, and my family and I have finally become happy and healthy again after losing my sister in 2012. I made tons of new friends and kept my old ones very close. At the end of last year I felt relief and had the thought "finally, I can have a little peace and start being normal again."  Then the seizure came...

     The holidays were coming to an end and January 1st as I said goodbye to some of my dear friends who were in town from Florida. Everything seemed normal, although I was particularly exhausted, but I saw my friends off and continued to work on lectures for a majority of the day.  My boyfriend invited me to his grandparents’ house for the classic New Year’s meal and even though all I wanted to do was throw on some sweat pants and cuddle to Netflix -- I showered and headed over to see them. I must have been there for an hour or so, feeling pretty tired when something startled me. It was an unexpected tap or bump and suddenly my hand did "the spasm" as I call it. I will explain what I mean in a minute. The spasm quickly traveled up my right arm, to my chest and legs, and the last thing I felt before I blacked out was the right side of my face going numb and I remember looking at Jordan's brother-in-law and screaming "something's happening." Based on what my boyfriend and his family tell me I had a movie-grade, stereotypical tonic-clonic grand mal seizure.

     The seizure lasted for almost 3 minutes and, when I came to, I had no idea what happened. I couldn't remember what day it was, couldn't remember who the president was, had no clue where we were. But the first thing I did when I opened my eyes is look at my boyfriend,Jordan, and smile and touch his face and say "look at this little cutie!" (Of all of the things I could have said! and if know Jordan - you know that he absolutely loved that… well if it weren’t for the seizure thing) Apparently Jordan had helped someone with a seizure disorder before so he caught me before I hit the ground and knew what to do while I was convulsing. They told me I had a seizure and I didn't believe them at first --- but then the ambulance was there. And boy was I pissed. I struggled financially last year and I got health insurance through the affordable care act after losing it a few months prior because I couldn’t afford to pay for it. My health insurance started January 1, 2016 at 12:01am. My seizure was January 1, 2016 and 8:15pm. And I didn’t want to go to the hospital because I don't have any money and honestly, I was terrified. Jordan’s loving family kindly forced me into the ambulance and came to the hospital with me. Jordan hopped in the front and, knowing how frightened I was, asked them not to turn on the siren. As the time passed and I realized what was happening, memories from the seizure started to flow back and I remember the aura and the spasm moving up and across my body. 

     So there we were 10:00pm on New Year’s Day in the ER at East Jefferson Hospital in Metairie. Me, my boyfriend, and his parents all looking at each other like “wtf?!?!” The hospital asked the typical questions “do you have a history of seizures, are you stressed out, have you been taking diet pills, do you smoke or do drugs” all of which I answered honestly (and of course -- NO) to because my life has been really boring lately and I’m too old to do a lot of the fun stuff now. The hospital ran a bunch of tests including urinalysis, CAT scan, blood work, etc. and they didn’t find anything abnormal. They thought it could be caused by stress and sleep deprivation which sounded good to me because I was stressed and sleep deprived (as are most red-blooded Americans these days).  The doctor there did tell me that I should see a neurologist to figure out if something specific caused the seizure but also said it could be a onetime thing. 

     Well, I don’t know if you know this (I didn't) but a lot of specialized doctors are really busy and it’s hard for them to take new patients. And by hard - I mean basically impossible. This also happened a few days before I had to begin training for a new department I joined at work which meant I didn’t have time to find a neurologist and I didn’t really want to because I was afraid of what they were going to say. While I was trying to pretend that a seizure was no big deal and get ready to go back to work after the holiday break, Jordan spent his time calling 30 neurologists trying to get me an emergency appointment. And none of them had availability for at least a month to 6 weeks. Finally, through a family connection of Jordan, I got in with a neurologist associated with East Jefferson General on January 5. It was either that or the end of February. Of course my first thought was “shit, I have to miss training how do I tell them I need off because I’m 27 and had a random seizure” especially since I was a brand-new hire. Anyway, I took off of training and made my appointment. 

     Dr. Peterson is my neurologist and I was not excited to meet him. He is a lovely person but I didn’t think the visit was necessary -- but Jordan encouraged me to go because he knew I was really stressing out. That and having a seizure is truly exhausting … I couldn’t get enough sleep after it...I'll probably describe post-seizure feelings in another blog sometime. This is where things really start to pick up the pace ---- but before we go on, I have to back track to July 4, 2012. 

     My little sister, Mickey, went missing on May 19, 2012 and if anyone out there has experienced a missing person, you know that there are few things more hellish, miserable, and stressful. Unfortunately my sister was missing for 3 months, and, when we found her, she had been murdered the day she was abducted. I think the details about the entire experience of my missing sister is best left for another blog -- but to make a long story short I was put into the spotlight as the family spokesperson. I’m not going to lie, this was and always will be the 3 worst months of my life and I still miss my sister every single day, all day. And honestly, I would rather battle 6,000 more brain tumors than suffer through another missing person. While she was missing we didn’t sleep, or eat, or do anything but go to the headquarters and talk to police, media, private investigators, our community supporters because running a missing person campaign is a full-time job. Even when I was supposed to be sleeping I would stay up all night scouring the internet hoping to find a clue as to where Mickey could be. That summer was also the end of my first year of grad school where I was studying neuroscience at the University of Texas at Dallas (yes, I see the irony that the neuroscientist specializing in brain pathologies didn’t know she had a tumor or epilepsy).  To say the least the summer of 2012 was extremely stressful. Now back to July 4th 2012 -- July 4^th is significant because it was the first time my hand spasmed. 

     A firework went off as I was leaving my car and it startled me and my body responded by doing the spasm, tingly, clinchy thing with my right hand that I couldn’t control. "The SPASM."  I had been so stressed and on the computer so much that I thought it was carpal tunnel. I should have paid more attention to that spasm. Over the course of the next 3.5 years the hand spasms got worse and eventually started being much stronger, more uncontrollable, and lasting a lot longer. And now, when I look back on it, I knew in the morning when I woke up whether I was likely to have a hand spasm but I just never knew right when it would happen. They always seemed to happen more on days when I was physically, psychologically, or emotionally stressed --- but I have had 100s of those and thus 100s of seizures. It sounds so stupid now, but I was embarrassed of them and I thought they happened because I didn’t go see a therapist after my sister was killed - some kind of physical reaction to stress. I remember the first time my boyfriend saw it happen and I couldn’t hide it and I was mortified, I thought “great now he’s going to think there’s something wrong with me”.  Now back to January 5, 2016.

     We show up to Dr. Peterson’s office, by this point my boyfriend was “mothering” me while my parents couldn’t be here and he and was basically my personal chauffeur. Jordan picked me up from work and brought me to my appointment and helped me get all my ducks in row -- even coming prepared with a full list of questions. The neurologist asked the questions you may expect “history of seizures, family history of seizures, family history of diseases, medications, etc.” but then I told him about my hand. And keep in mind my hand spams is where the seizure started from, then he matter of factly told me that I have epilepsy. EPILEPSY? WHAT? EPILEPSY! Noooooo, I can’t have epilepsy I have only had one seizure! Just one! ---- But that was not the case. I actually had 100s of seizures for at least 3 and a half years - every time my hand did "the spasm". I was shocked and horrified and confused but my boyfriend was not. He had done some research and was anticipating that diagnosis. Because of my background, I knew more about epilepsy and seizures than your average Joe, but I didn’t know much about it other than a definition and its interaction with brain function. How can I have epilepsy? I studied brains? How can this be possible? But alas, that was the case. Now that I am aware of the different types of seizures that exist I can confidently say that I have been suffering from epilepsy for at least 4 years and I had no idea -- because most of the seizures I experienced are known as simple partial seizures (like the one in my hand) and absence seizures (where you lose your train of thought and your mind goes blank for a few seconds). I know that these are seizures because they were accompanied by an aura and other warning signs but hindsight is always 20/20 isn’t it?

     Dr. Peterson reassured me that it would be fine and that millions of people live happy, long, normal lives with epilepsy. There are also great drugs and treatments to help control the frequency and strength of the seizures. That day I opted to start pharmaceutical intervention with the anti-convulsant Keppra. If you know me, you know this is a big deal because I am anti big pharma and I think things are grossly over-prescribed before alternative forms of treatment are tried. But seizures are scary, they’re not painful, they don’t do anything to you but you can’t control them and I didn’t want to have another one. Especially since most people’s triggers are stress, insomnia, alcohol, etc. and that’s pretty much how I live my champagne-loving type A life. -- I mean COME ON! I live in New Orleans! -- So by January 6 I had accepted that I have epilepsy, started taking my medication and trying to figure out how the hell I would get around because people who have a lot of seizures aren’t supposed to drive for a while.  All of this made me so stressed I felt like my hand would do “the thing” at any moment. As far as precautions go, the doctor also ordered an EEG and an MRI to check for the epilepsy was coming from and to make sure there were no organic causes (i.e. TUMORS). 

     January 8 my boyfriend and I were back at east Jefferson waiting to do the EEG and MRI (may as well use your health insurance while you got it, am I right?). The EEG was horrible, it wasn’t really but I was a nervous wreck and sure that I would collapse into a seizure and die at any moment. That, of course, didn’t happen but it was still scary. The scientist inside of me loved it -- so to pretend to be brave I asked the technicians a lot of questions about the EEG while they were sticking like 30 electrodes all over my hair and head. It lasted about an hour and I survived the strobe-light test, seizure free. I have so much hair that it took them a while to get the results like the needed them to which pushed back into my MRI appointment. Jordan and I planned on getting lunch, but instead we shuffled from the EEG area to the radiology department in another building. Finally I got my MRI done and we were free to leave. 

     In grad school, part of my internship and job while I worked at UTSouthwestern was analyzing MRIs and other types of neuroimages as they related to addiction and Alzheimer’s Disease.  I requested a copy of my MRI images from the technicians because I thought I couldn’t possibly have a tumor. We got the disc, got some food, I called my best friend and my parents and said everything went ok. Then I looked at the disc, despite Jordan pleading with me not to. I was ecstatic, my brain looked so beautiful and healthy ... and then I saw the bright, white mass in what I thought was my left parietal lobe. Stupid me, I didn’t think it was a tumor because it looked nothing like tumors I’ve seen the past. When you see a tumor with contrast dye in neuroimaging they typically have a dark circle around them indicating edema or swelling in the surrounding tissue. My mass was small, bright, and really circular and I thought it must be scar tissue where the epilepsy originated from. I washed my hands of it and felt a small sense of relief, and I was impressed because my brain was looking really sexy otherwise. #NerdAlert

     I expected to hear back from Dr. Peterson the following week but I kind of pushed that out of my mind and got ready for school. That Monday January 11 was teacher orientation. I didn’t sleep very well the night before, and I was still on a really low dose of Keppra so I was feeling very “seizure-y”. At the same time, I was also excited to be there and start the new chapter of my life as a full-time college professor. I made it through orientation and on my lunch break I got a phone call from my doctor. -- He asks how I had been feeling and if I had any more seizures and I did have two simple partial seizures the day before, I probably hit the gym a little too hard that day. So the first thing he did was increase my dosage of Keppra from 500mg to 2000mgs. And I thought “holy shit that’s a lot of drugs dude” ----- then he tells me the dreaded words - “there appears to be a mass on your MRI, I’m going to have to refer you to a neurosurgeon”. And for the second time in my life, the earth stopped spinning and I crumbled. I asked him what he meant - a mass- and he said he was worried it was an astrocytoma, a type of brain tumor. I excused myself from work and went in the parking lot and cried in front of 50 of my colleagues -- luckily I didn’t recognize any of them. I called my boyfriend who came and got me after I walked to the park, I called my mom to tell her that her daughter had a brain tumor, and I called my best friend to tell her that I loved her. None of them could understand a word I was saying other than “tumor, tumor, they found a tumor in my brain”. 

     This is where the story gets a lot better because we got to meet Dr. Dumont - the head neurosurgeon at East Jefferson who is also the head of the Neurosurgery Department at Tulane here in New Orleans. Our appointment with him was Wednesday, January 13, two days after I heard the T word. I was exploding out of my skin! -- I wanted to know if I would live or die, would I lose my hair?!, did I have brain cancer?!, would I have to do chemo?!, were they going to cut into my brain?! He immediately made me feel calm and I let him know that I had a background in neuroscience so to lay it on me as openly as he could. He walked Jordan and me through my MRI and showed us exactly where it was and gave us a few ideas of what it could be: a meningioma, a glioma/astrocytoma, or a benign growth of blood vessels located in my left frontal lobe in what he believed was the supplementary motor area. He said whatever it was was likely low-grade and very slow growing. He ordered a few more tests but said he felt extracting the whole tumor would be the best option and that after we got the other tests done I would probably have surgery and everything within the month. 

     January 13^th I got a new identity, I was Charlie Shunick: teacher, CEO, epileptic, with a brain tumor. My boyfriend was very optimistic about everything we heard and I should have been too but I wasn’t. I was pissed. I’m not religious, but I am fairly spiritual and I just kept asking the universe “why me, WHY ME? Haven’t my family and I gone through enough shit, can’t you just give me a year of peace?!”. Regardless of how you feel about the universe, god, energy, or purpose we are all smart enough to know that life doesn’t owe you anything. And this didn’t happen to me for any reason, it’s just life. A genetic mutation. And so we pushed on…

     Classes started that Saturday and I showed up and did what I love to do. Teaching is an amazingly fulfilling career (not for your wallet) regardless of how much all of us complain about it. And I truly love teaching anatomy and physiology, the human body is top notch scientific evolution in all its glory and I think everyone should recognize how incredible we are. I got through my classes from 8-2, seizure free and thought “huh that wasn’t so bad” in fact, I felt better than I had the entire month and I’m sure it’s because I was more stressed about sounding like a babbling idiot than I was about falling on the ground in seizure that probably wasn’t coming. The following Monday, January 18 I went and got two more MRIs done to get more pictures and to look at the blood vessels surround my tumor. 

     My dad had been offshore working but he finally got back into town on January 19. The 20^th we went and saw Dr. Dumont again to look at the newest MRIs and to see if he had a clearer idea of what type of tumor it could be. He narrowed it down to a low-grade glioma or meningioma and scheduled the surgery for the following week. I knew the surgery would happen quickly, but I didn’t think it was going to be in a week. My family and friends and boyfriend were so supportive and behind me that I gathered up the courage and agreed to the neurosurgery of my big, beautiful brain.

     That week was weird. I had to tell my boss when my last day would be and explain the risks of the surgery and that I would have to take 6 weeks off. They tried to pay me but since I am a brand new full time professor I didn’t have any benefits built up, so I had to take a 6 week leave without pay. I had to arrange to get my 6 classes full time subs for a few weeks and make quizzes, and lectures, and exams and things that they would need to use while I was away. I couldn't even tell my students. Saturday, January 23 was my last day of class; it was also the day my boyfriend’s sister, Amanda, and her husband, Trent, got married. The wedding was beautiful and perfect and it was wonderful to see what a great family they really are.  I wasn’t drinking (for obvious reasons) and didn’t feel much like dancing and small talk --  it seemed pointless because all I could think about was the impending doom that was Wednesday January 27^th, the day they cut into my brain. 

     I stayed with my boyfriend and his family for the next few days and at 5:00am Wednesday morning I woke up, showered with this terrible smelling antibacterial soap I got in pre op, and Jordan and I headed to meet my parents at the hospital. I don’t think anyone slept, I thought I did but Jordan said I was crying in my sleep all night long. Talk about feeling sorry for yourself and being a liddle baby. But hey, I was scared. We arrived at the hospital for our 6:00am appointment and my parents joined us quickly after. Everything got put into motion, they checked me in, gave me Xanax and a bunch of people came to talk to me and they all laughed at my jokes. By the time the Xanax took effect, they were injecting my IV with “happy juice” and the last thing I remember is getting into the operating room and thinking “man there’s a lot of shit in this big ass room” ...... then  …   silence…

     Four hours later I’m awake, tripping on anesthesia and whatever else they gave me but I was smiling at my parents, Jordan, and his parents. The videos are hilarious (coax me enough and you might just see one). The risks of the surgery were: weakness on the right side of the body which I had a little bit of at first, trouble speaking which I didn’t have, and some fine motor skill issues which I am fixing right now by typing this. I will say this, is it 5:19am on Wednesday February 3 and 6 days ago I couldn’t have written this post. I am astounded at how incredible I feel and the excellent job the surgical team did. I still feel like me. There have been some adjustments to medication that was making me sad for a while and pain pills which wreak havoc on your GI tract and I have constant headache but I am Charlene Emily Shunick, maybe even sassier. 

     Now I have a titanium plate in my skull, and the little parasitic neural tissue causing me a bunch of problems is gone. I probably can’t sleep tonight because I should find out later today what type of tumor it is. And even though I shouldn’t be nervous, I fucking am. The good news is, regardless of if the tumor is cancerous or benign they removed the whole thing and chemo and radiation aren’t necessary at this point in time. The path now is to recover, take care of myself, be happy, and continue paying for health insurance. Of course my life will be filled with tests and checks to track the tumor and make sure it isn’t coming back but I am alive, well, and I’m so excited. 

     I couldn’t be where I am right now, even if it is 5:00am and I should be sleeping, without my family, my best friends, my boyfriend and his beautiful family. I recognize that I am loved and with that love I’m going to continue to try and inspire people in any way I can. It is a great thing to get up and say “I have a great story about that”. and believe me --- I have a story for you.

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