Auras Auras Auras... What's a girl to do?

Well, this week will make a month since I've had my surgery. This coming Saturday to be exact, and there's still no final word from pathology (ughhhhhhhhhh). And — as Jordan says "I've made a miraculous recovery.” Physically speaking, I would say that I agree. I'm walking 2+ miles every day, one day last week I even walked 4. I'm getting up and down the stairs a lot more easily and I'm able to carry slightly heavier things now. Unfortunately, doing laundry is a task that I can accomplish with no issues now... as is cleaning out the fridge and vacuuming... so I've been doing daily chores again. However, I did sneeze yesterday for the first time since the surgery and it hurt a lot. I. Am. A. Grandma. 

Psychologically, I have good days and bad days. One day I feel great and the next day I will feel anxious and the next day I'll feel seizure-y. When I wake up, I never know what I'm going to get. The neurologist said that was very common and should go away in a few months. Riding in the car is certainly getting easier. Last week I also decided to go to lunch with 2 of my friends ... by myself ... That may have not been the best decision but I didn't realize it until it was too late. I was very excited to get lunch with the two girls and the Uber ride to the restaurant was ok, but as soon as I saw all the people inside the restaurant — my heart started racing.  When I sat down we all started talking and one of the girls asked me a question and an aura hit me like a ton of bricks, and I thought "shit shit shit I'm about the have a seizure right here and I don't know what to do." I can't describe the feeling other than a sense of dread— it’s very unsettling. 

I'm going to attempt to describe what a seizure and an aura feel like ... for me ... but it is important to note that it is different for everyone. And again, since I have really only been paying attention to mine for about 2 months now I can only offer narrow insight. The first thing I notice is this "feeling" I have when I wake up. I don't know how else to describe it other than sympathetic nervous system stimulation, I feel a little on edge and my hand feels kind of weak and slightly tingly, so slight that you would hardly notice if you weren't paying attention to it. As I have stated before, looking back on my hand spasms now, I could tell if my hand would do "the thing" when I woke up I just never knew exactly when it would happen.  I have no idea when an aura or seizure are going to hit -- they just do -- and my aura is my only warning sign. The aura puts my life into slow motion and it also feels like when you're startled by something (that high adrenaline hyper aware feeling). My aura always starts in my right hand in the palm, it's a warm, tingly, prickly feeling (imagine how your face feels when you're really embarrassed). The aura spreads from my right palm, to my finger tips, and then up through my right arm, throughout my right side (to the legs and face) and then it goes over to the left side of my body. That is quick but progressive, and sometimes accompanied by hand twitch. Before I upped my Keppra dosage my hand would always spasm, always. I honestly can't describe the spasm because they're so unnatural and uncontrollable, but they're weird. I haven't had any kind of seizure other than an aura and an absence seizure since getting on 2000mgs of the anti-convulsant. Again, I don't want to go into the statistics of pharmaceuticals, placebos, an alternative therapies (maybe in another blog) but some of that could be me believing that these drugs will stop my seizures. But so far... they have. After the aura passes, if there isn't a hand spasm, the room sounds muffled and it feels like my nasal passages tighten up, like all my senses kind of dampen, except I think I also smell rubbing alcohol, I'll get back to you on that --- and then my mind goes blank for a few seconds to a half a minute - I mean really blank. Now, the worst part for me again, is the anticipation and fear of seizures which I know will eventually go away. The people I talk to say "yeah I have had seizures in lots of place and then I get up after and say 'my bad' and go home." They don't let seizures stop them from living and eventually I won't either, and I know in due time I won't fear the seize.

Luckily, at lunch, that seizure never came. The feeling washed across my body and, after a couple minutes, it was gone. I doubt my friends even noticed and I didn't mention it to them because I didn't want to stir up another aura or seizure. And other than that, lunch was lovely, we got to catch up, and I didn't feel bad after about 15 or 20 minutes of the aura happening. To be fair, there are things called "false auras" and that very well could have been one, I guess I didn't realize how stressed out I was. But according to epilepsy.com, an aura is a type of seizure known as a simple-partial seizure. To say that feeling the aura broke my heart would be an understatement. One of my main driving forces for going through with the surgery was the fact that it could have cured my seizures/epilepsy --- this was obviously before we knew the tumor was cancerous --- but it was my first true epileptic experience since the surgery. And since that aura, I've been a nervous wreck... I was just hoping I would never have one of those feelings again.

On a positive note, one of the best things about last week, that had me crying for days was that WE HIT OUR FUNDRAISING GOAL! I couldn't be more grateful to everyone who got involved and helped me out through this situation, and of course thanks goes out to Brooke and Jordan for setting it up  and to my girl Reagor for moderating it. I was very hesitant to go public with the fundraiser, but my options were limited and I really had no other choice. Also, 2 of my very best friends April and Lyndsey came and stayed with me this weekend for Monster Jam (April loves all things car and jeep related). I was pretty nervous about having them stay with me, especially after last Thursday, and I ended up having a blast and not feeling bad at all. We may or may not have reenacted the final rose night on The Bachelor. I'm so glad they came because I really love those ladies. And, one of my other best friends told me she just found out she was pregnant after she and her husband have been trying for months and months. She is going to be the cutest pregnant lady ever. This just goes to show... just because your life stops for a while... it doesn’t mean everybody else's does. It has only been 4 weeks and I have to fight the feeling of sadness that other people’s lives are moving so quickly and it feels like mine has been standing still since January. But... every time I feel really bad I think about those first few steps I took after my surgery and now I think about myself climbing up a hill or doing a little walk-run from the rain and think "wow, I'm actually much stronger" and I am, for sure. I'm also doing really well in the car, and tolerating public places and groups of people a lot better so I know in another couple of weeks I'll be much closer to normal than I have been these past few weeks. 

Some other things that are happening is that some of my stitches are "spitting" meaning my body is beginning to force them out. They were the absorbable kind so a majority of the 3 layers of stitches in my head should be gone, these are just the left-over pieces. The ones that are spitting are extremely itchy, I mean EXTREMELY. Only I can't scratch them because they hurt. I have pictures, but I will spare your eyes because no one wants to see that on someone's scalp. The numb spot also seems to be getting less numb, it is also very, very itchy.  I finally got a call from an oncologist so I will be meeting with him tomorrow, Thursday the 25. For those of you unfamiliar with them, oncologists are doctors who specialize in treating cancers. My oncologist is in the East Jefferson network so I will be going back to the hospital that saved my life and finding out what the next steps are. I still haven't heard anything about the second opinion from pathology, and by this point I guess I don't care. I just don't want to get blindsided by being told, out of nowhere, that I have to get radiation. Which honestly, is a fairly low possibility, but it is a possibility none-the-less. This Friday I plan on going to speak with my boss about a game plan about getting back to work. They did say, in the event I can't teach or don't feel comfortable teaching, they will give me other work to do for the rest of the semester. I do really want to get back in the classroom but with my current schedule and everything I don't know how practical that will be, especially since I definitely won't be driving for the rest of the semester. I do still have several weeks of improvements before that time comes so hopefully I'll keep getting stronger and healthier physically and psychologically.

So, as promised I have 2 pictures of my tumor to share with you guys. I wanted to get an image from each slice they could be viewed on but the discs the MRIs came on are just obnoxiously large and hard to navigate. Normally what doctors do to look for abnormalities in the brain is order a standard MRI which is literally just pictures from different angles of your brain and then they do an MRI with contrast dye. Both of the images I'm presenting were done with contrast dye, and what the dye does is make masses and other growths stand out more (it likes to cling to fats which is why you'll see my white matter blinging too). What you're going to see in both pictures is a bright white mass on your right side (but my left side of the brain). It's circular and goes down and kind of looks like mushroom or a UFO. It's also very close to the midline of the brain.

Without further ado, here is my brain:

The picture above is transverse slice meaning it was taken from the bottom of my brain (the portion closest to my neck) to the top of my brain. If you look at this picture you can see the mass on your right side (my left) near the middle of my brain, it is perfectly circular and kind of radiating brightness. All the other bright white bits on this picture is my beautiful, puffy, perfect white matter. The front of my brain is pointing toward the top of this photo and the back is pointing toward the bottom. That area you're looking at is the supplementary motor area of the frontal lobe. Had the tumor continued to grow, it would have gotten into the motor cortex and then we would have had some serious issues, like not being able to initiate movement, possible paralysis, not being able to use my right leg, etc. (to be fair these were all risks with the surgery I had but they would have been greatly increased had the tumor gotten into the MC, and possibly permanent). 

This picture above is a coronal or frontal slice. These images move from the front of my head to the back (really, for these it was back to front but I wanted you to get an idea of where we are looking). This is largest part of the tumor. Here, you can see how deep the tumor was located, where it was starting to project, but also how close the midline of my brain it was so it was in a relatively accessible area. The accessibility is why I believe I have had such few side effects because I didn't have to lose very much actual brain tissue. As far as places go, my tumor was in the second best place it could be in. If you look below the tumor just above the little triangular shaped space, that is my corpus callosum which in the area for inter-hemisphere communication. Had my tumor continued down and they had to cut into that my right and left lobe may not have been able to talk to each other. And for all my brain friends, look at those nice, tight ventricles ;-)... In other words, this is even more proof that I got very lucky. 

I wanted to also get a picture up of my brain post surgery so you guys could see my hole but I haven't gotten the disc yet. It is really weird to think that there's just a hole in my head now, especially one that is nearly a perfect circle...just existing in there. Glad we got that sucker out of there because like most people, I just don't have time for a brain tumor.

Hopefully when I meet with the oncologist at the end of the week I’ll have some more answers. I'm just way too impatient for all of this. I want to know what type of astrocytoma it was, how long it was there, and the percentage chance it will grow back. It will also be nice to know if I have to get radiation right now and the exact steps we will have to take over the next few years to track my hole and absence of tumor. Anyway, life is continuing to get better and I'm trying to remind myself of that everyday. Jordan and my friends are doing a great job of reminding me that I'm still me, and still really cool with really bad jokes hahaha. Hopefully I'll have some actual news to deliver to everyone come next week that will really start solidifying what exactly just happened. I hope I never have to see that little UFO-shaped tumor ever again --- and yes, I realize I am starting to repeat myself. It's just a stagnant process, a waiting game. 

Also, thank you to everyone who has been enjoying the posts. I have to admit that there are 2 people helping me edit these blogs for grammar, punctuation, and sense as I'm still putting weird words and letters in places where they don't belong sometimes.

The C Word

Brain cancer. Brain. Cancer. BRAIN CANCER. Cancer. The C word is so intense, and at the same time it's just a word. I'm 28 (now). 3 weeks later and I'm wondering how could I possibly have just battled brain cancer. How long was it growing in my brain? How did it really start? Was it all the diet coke I drank in college? All the binge drinking I did on my lagniappe year? Could it have been all the processed food and red meat that I have consumed for most of my life? My random bouts of insomnia? Or is it simply a fluke? I have no idea. And neither do the doctors... for most types of cancer. Since scientific research improves everyday --- thanks to technology --- hopefully in the future we will know where it comes from.

The interesting thing about my type of cancer (grade II astrocytoma) is that it's very rare -- only about 1,500 people are diagnosed with them in the United States every year. Most people who get this type of tumor usually survive long after treatment too, but like I have stated before, these guys can grow back. One positive thing is that this means my brain tissue, and tumor, and case will be used (anonymously) for tons of research and hopefully that means it will assist doctors and researchers with cracking the mystery of the origins of the tumor. And eventually help a lot of other people. 

Last week was a rough one. As I was finally coming off of all the medication, I started feeling pretty bad. Monday and Tuesday I had level 10 headaches, I didn't sleep for more than an hour Wednesday night and Thursday morning I threw up twice and then slept for 6 hours. I'm sure the physician's assistant is tired of my paranoid emails about every little problem, but she's probably had worse. Since then, I have actually felt pretty good. I haven't even taken tylenol in the past 2 days. My dad left Tuesday and my mom left Thursday and it was bitter sweet. I was definitely up for some alone time... I've been living alone for 4 years now and usually when I spend a lot of time with someone or someones, it's my choice. But at the same time I was very afraid to be alone and worried about what I would do if something were to happen or if I needed something. Since I still can't drive, and walking more than about 2 or 3 miles really exhausts me, how am I supposed to get bananas and water and other things? But it has been fine, and Jordan has been taking good care of me... again (if he ever has kids, he will make a great mom).

One of things that has really been bringing me down is that I realized I won't be able to play any sports for at least a year. And if you're thinking "Charlie, you're 28, what sports are you playing" I'm just going to tell you that you don't understand!!! hahahah, I play 3 or 4 different co-ed sports year round and I'm devoted to several teams (No Basic Pitches - kickball, The Dodgefathers - dodgeball, and The Chicken Biscuits - softball). I was even supposed to be a captain for softball this spring. I know it sounds silly, but it's one of the ways I stay active and socialize. Even if I could play, I would be too afraid to because my skull is still growing back together.

By the way, you can HEAR your skull growing back together. It makes a ticking noise that sounds kind of like your sinuses draining. The first week back home, it kept me up all night long. Creepy fact of the day.

Jordan and I met with the neurologist yesterday (February 16) for a post-op check up. Dr. Peterson was also very happy with my recovery and, since he and the neurosurgeon make up a team, he already heard about the surgery and my recovery. Shout out to Dr. Peterson for finding my tumor and Dr. Dumont for removing it!!!! It looks like I'll be meeting with my neurologist 2-4 times a year for the next few years to track my seizures/epilepsy. Unfortunately, he did tell me that the chances of getting off seizure medication or lowering my dose was very low, so I'll likely be on Keppra, or something similar, for the rest of my life. The only problem with that is if I ever decide to have children... which honestly is a low possibility because I'm not a kid person and never really planned on having children. - But what if I do become pregnant one day, then what? Again, I know thousands of women with epilepsy have babies every day. Anyway, if I do become pregnant, there is an increased risk of birth defects, it's low but it does exist. And I don't want to do that to a tiny, adorable, human being.

And if it seems like I talk about the seizures a lot, it's because ... in my opinion ... they're the worst part (so far)... but maybe that's because I still fear the seizures. In fact, one of my old friends who has epilepsy told me she wishes she had a brain tumor they could remove that would possibly take her seizures away. The really put things into perspective for me about how inconvenient and life changing the disorder can be. The thing is, epilepsy can kill you but more so by driving or drowning or hitting your head whereas cancer kills you in a slower, more gradual and painful process. The burden epilepsy puts on you is great but not so much for your loved ones - that burden is small (except for the people who are with you when you seize, apparently that's really scary and horrible to watch). The burden cancer puts on you is large, and what it puts on your loved ones is even larger. Neither of them are very fun — both are very stressful. I was hoping to kick cancer and epilepsy's asses but beggars can't be choosers. And I will choose epilepsy over brain cancer any day.

I may never have another seizure again, of any type, but I do still have to be on the medication. That is because before I had a lesion (the tumor) that was disturbing my brain activity, and now I have another lesion (the hole that was previously known as tumor) that will also disturb my brain activity. --- And all epilepsy really is, is a disruption of electrical signaling that makes your brain go haywire. At least when you have a really intense seizure (like a grand mal) you black out and can't feel it. Another interesting thing I learned about seizure yesterday was that the more you have, the more you are likely to have because your brain "learns" to have them. It becomes increasingly easier, and I can vouch for that because after I had my big one on January 1 --- I had 4 more just a week or two after --- To say that I haven't felt "seizure-y" would be a total lie because I certainly have since the surgery. It truly could be related to stress (which has obviously been high), and, since I can't workout, I don't have my usual outlet for it. I haven't had the feeling that I did on the days where I knew I'd have a spasm, but when I get stressed, like really stressed now, my hand "feels weird." I think I will feel that way for a long time though because of the type of person I am but also because all of this is still new. But nonetheless, when Jordan and I were running a little late to our appointment (which we ended up not being late for), I was anxious and therefore my hand felt weird and therefore I was being bitchy to him. I'm also working on the bitchy part but since the steroids have gotten out of my system, all the sassiness is just slightly heightened from the level I used to be on :-). 

Dr. Peterson also kind of filled me in on pathology and why it's taking so long. By Monday, I couldn't stand it anymore so I emailed my neurosurgeon to ask if the results were in yet (and then I refreshed my email every hour about 30 times). I mean, it's been 3 weeks and my inner diva is just throwing a fit. Apparently when they're dealing with a cancerous tumor they do things painstakingly slow for several reasons. Mostly so that they don't mess anything up or miss anything. It looks like one neuropathologist has already looked at it and confirmed it was a low-grade astrocytoma. Now they're sending it off to get a second opinion. And I do expect to hear from my surgeon today or tomorrow, with a few more details about what they know right now. 

With that, now I will meet with an oncology team sometime in the next few weeks. --- Hopefully before I go back to work, because right now I'm doing nothing. Once I'm working again, I will be grading tests and quizzes and making lectures and you know... teaching. --- There are 3 different results I can expect from pathology: 1) they got the whole tumor so with my surgeon and the oncology team we will track the space (via neuroimaging) and make sure the tumor isn't growing back, 2) there are microscopic pieces of the tumor that appear to still be present in my brain in which case we will probably opt for radiation treatment to zap the rest of the cancerous cells, or 3) the results are inconclusive in which case we may opt for radiation to zap the area to make sure no cells remain or track the growth without radiation and see what happens. In my opinion, if they aren't sure they got all of the tumor, I want to radiate it until the cancer cells are begging for forgiveness. I know the tumor can grow back, but I want to do everything possible to try and make sure it doesn't. I'm even starting a cancer-friendly diet, meaning less red meat, more fruits and vegetables, less sugars and processed foods, more whole grains. It's not very different from my current diet, but if there's cake around, I always eat cake. Now, maybe I won't always eat cake, or maybe I will hahaha. And obviously, I gotta kiss the booze goodbye. It's been great booze, thanks for all the memories, but we simply can't be friends anymore. That's not to say I won't ever have a beer or a glass of wine or the occasional martini, but I won't be staying up until 4 am, on Mardi Gras guzzling 6 gin and tonics and sipping on chartreuse ever again. 

If I can be honest, I don't know how I feel with this recent news and development. I mean, I'm walking, talking, laughing, eating, and doing things on my own now, except for driving that is... I still can't legally drive until May and well, right now I don't have a vehicle because my dad is selling my old one... And I guess I still have epilepsy. I may have to get radiation therapy or maybe I won't? I may have brain cancer again one day, or maybe I won't? All these questions are leaving me with more questions, and at the same time it's all completely out of my control. It's very frustrating but at the same time, it's not at all. I guess it's like a lot of other things in life actually.

 But every time I say the word "cancer" I feel completely disconnected from it. Like I didn't really have it — but I did. Or maybe I still do..? And once you have cancer do you always have cancer or am I cancer survivor now? There isn't a guide out there that gives you all these answers. I'm sure a lot of the things will be answered when I do meet with my oncologist though, I just wish I knew when that would be... And the bills have started to roll in, which is even more stressful since I'm not currently working, but luckily my super best friend, Brooke and boyfriend, Jordan have created a fundraiser for me to cover the rest of my medical bills. And once I am back at work, paying for an MRI here and there, and a couple doctors visits every couple of months won't hold the same weight as this recent situation. You can see the fundraiser link here: https://goo.gl/90OOKY . Brooke tells me to stop talking about and worrying about money and I know it's taboo to talk about but the first thing I thought when I found out I had a brain tumor was "OMG am I going to die and if I don't die how the heck am I going to afford this?" Which really isn't how cancer should be, it should be more like "I don't care what it costs, get this thing out of me so I can hug my loved ones and walk my dog and live until I'm at least 75."

Another thing that has happened since speaking openly about my personal struggles with my recent health is that a lot of people, some of which I know really well, have been talking to me about their health issues. From M.S. to lyme disease, to ALS, and even different types of cancer and tumors that people have battled through. It makes me realize again, how lucky I am to be alive and relatively healthy. I'm even walking 2 miles a day already. My goal for the end of February is 3 miles. There is also a situation happening in my hometown, Lafayette, making me realize that my cancer story could have been so much worse. It's the #teambrittini campaign, Brittini is suffering through acute leukemia, and just like me, she went from being healthy one day to finding out she had cancer the next, you can see her story here: http://1079ishot.com/cjs-family-can-use-your-prayers-and-positive-thoughts/. 

Again, I truly believe that without the love and positive energy I have constantly surrounding me, I wouldn't have made it through my sister's murder and I wouldn't have made it through this situation either. It never ceases to amaze me the kindness and love that strangers (and of course all my friends and family) give to me and my family. I don't know what to say other than your prayers, offers of love and support, and well wishes do not go to waste. I keep getting stronger everyday, and my anxiety and feelings of hopelessness are subsiding. In fact, I'm kind of excited to get back to work and a normal schedule, even though I still don't know how the heck I'm going to get around.  But that’s a problem for another day — and a small one at that.

Two weeks

Two weeks post op and things are not as I expected...

The real problem is that before my surgery I spent my time researching what the surgery was like, what the possible tumors were like, and what the side effects of tumor resection in the supplementary motor area would be like. And of course I youtubed a couple frontal craniotomies because I'm a glutton for punishment. For the record - those videos gave me serious nightmares and I really shouldn't have looked them up — and yes Jordan told me not to. You don't really think about the fact that they're cutting into YOUR brain and blood vessels and skull and protective covering and those videos made me realize they were. They're one of the reasons I almost didn't go through with it.

What I should have been looking into was "life after brain surgery" which I guess wouldn't have really made a difference but at least I could have prepared my family and friends for what would be different. Since I'm still waiting on the final pathology results, I can't say for certain that I kicked cancer's ass but the doctor is fairly positive that they completely removed a grade 2 astrocytoma from my brain. An astrocytoma is a type of tumor formed from astrocytes (a type of glial cell) in your brain. You can think of glial cells as the supportive infrastructure of your hardworking neurons that make you who you are. So my tumor was made up of me. There aren't clear reasons why they form...they just do. A little genetic mutation tells them to start forming a mass. That mass eventually gets big enough and people usually notice changes that take place that tells them something isn't right. My changes happened to occur around the time my sister was missing which is why I didn't pay attention to a personality change, change in sleeping patterns, change in appetite and food preferences. And of course I already talked about the hand spasms that were actually seizures that I wrote off as carpal tunnel.

The scary thing about astrocytomas is that they come in different grades (1-4) each one being worse than the previous. A grade 2 astrocytoma, if left untreated, can turn into a grade 3 or 4. And once someone is diagnosed with a grade 4 tumor they're pretty much given a death sentence (but of course, people still beat those every single day). I do recognize how lucky I am because we did catch it early, and the problems associated with them removing a piece of my brain have been extremely minor - well at least from what I can tell so far. The problem is that astrocytomas are really great at putting little feet out, and those little feet can grow more tumors. And since pathology is taking so long to confirm that the entire tumor was removed/what type of tumor it was ... I'm just a nervous wreck. I'm trying to stay positive but how would those guys feel if they were waiting around to find out what kind of cancer was just cut out of their freaking brains? AHHH!!!

But anyway, it has been two weeks since my tumor was removed and my life is a lot different than I anticipated. A lot of the problems actually relate to the medication I've been on for recovery purposes. The first 24 hours after the surgery I was in the ICU. I don't even know where to begin with that... the were catheters, about 4 or 5 different IVs, tons and tons of injections, some physical tests and they woke me up every hour to talk to me and give me drugs. Apparently they were making sure I could speak and that my brain wasn't bleeding because sometimes it takes a while for cognitive decline to present itself.

The next morning I got an MRI done and they took the catheter out, and moved me to the 7th floor. Getting the catheter removed was by far the best thing that happened. For those of you who haven't had the pleasure, a catheter feels like a permanent bladder infection and it makes you feel like you have to pee constantly except you are peeing constantly through a tiny tube that's in your urethra. Discovering there's something in your urethra while you're on anesthesia is horrifying -- just FYI. And I can still remember the first steps I took after my surgery and how hard it was to walk, a sense of dread definitely crept into me that day. But the second and third steps were much easier.

So I was finally released Friday morning, two days after my surgery. I had to pass physical therapy and talk to a couple different professionals but all of them seemed impressed with my functioning and attitude. My boyfriend came to meet me at the hospital for my release, he also wanted to sit in on the meeting with the surgeon and the physician's assistant for when they told me how to clean my incision site and how to wash my hair. They finally took the bandage off of my head that day and I couldn't believe how small the surgery site was. Just like everyone else, I was expecting half of my head to be shaved... instead it looks like I have a little skin headband. And I have so much hair that now that everything is cleaned up, you can hardly tell I'm missing any hair at all, although the entire back of my scalp is completely numb and my scalp is extremely itchy...the itchiest thing I've ever experienced. The PA also gave us a bunch of prescriptions to be filled and said that I needed to get them that day.

You can see a few of the incision pictures here, for some of you they may be NSFW... the images are slightly graphic and a little bloody. You can see that one of the wonderful PAs also braided my hair in the front to get it out of the way:

As my boyfriend and I were leaving the hospital the first thing I noticed was ANXIETY. The bright lights, seeing other people, being in traffic, but more than anything...riding in the car. I hate riding in the car now. It fills me with so much irrational dread. It has already gotten better, but it sucks. Especially sitting in traffic, it really freaks me out. We got back to my house where my parents were getting ready for me to come home and Jordan and my dad went and got my medicine and a whole bunch of water. The drugs I was prescribed were: a corticosteroid to counteract inflammation, 2000mgs of Keppra, the anticonvulsant I've been on for epilepsy, the pain medication percocet, and an anti nausea medication because the pain meds make me extremely nauseated.

I thought I would spend the first two weeks sleeping and watching movies and eating jello but that has not been the case. The thing no one tells you about steroids is that they ruin your life. Corticosteroids are a necessary evil, but they have been the single worst experience of my healing process. They make you irritable, anxious, depressed, agitated, really REALLY hungry, and they give you insomnia. They also make you retain water, and make your skin break out, they also make your joints really sore and your skin hurts when you touch it. Combine those with the pain pills, that basically stop your GI tract from moving anything through it and imagine how unpleasant I've been. EVERYTHING has been pissing me off. Literally everything. I yelled at my dad for slurping cereal and coffee. I yelled at my mom for accidentally spilling a glass of wine on my birthday. I yelled at my boyfriend for singing along with Coldplay during the Superbowl Half Time Show - please make fun of him for that. I yelled at my dog for sniffing something on her walk. I've also been crying for no reason about nothing. I cried all day on my birthday because I'm crazy. hahahaa. It's just been unreal. The doctor should have warned us like "hey, if you survive brain surgery and don't have many issues you're going to be freaking psycho for a while and you'll be really mean to everyone for no reason for a couple weeks." Thanks a lot, modern medicine. I also have some serious ADD, I can't pay attention to anything for more than 10 minutes. So getting any work done, reading, binge watching a show online, are all out of the window. I am still having a few minor issues as well with typing, handwriting, texting, and some fine motor skills. And because my joints and muscles are so stiff - walking and getting up have been tough. The physical therapist recommended I get some crutches or a cane so I got a cheap cane and bejeweled it. I have only used the cane once, and that was yesterday when I was suffering from those very bad headaches. The only other huge difference so far is extreme weakness and fatigue and my short term memory really sucks. I get winded going up the stairs and have trouble walking more than 2 miles but I know those will get better with time.

Again, it's good that I can complain about the trivial things because a lot of people who have gone through similar things definitely aren't as lucky as I am. My last day of steroids was Saturday so I'm slowly but surely coming around. I finally slept these past two nights and aside from some really bad headaches (we're talking level 10, debilitating, feeling nauseated, can't move headaches) yesterday and Monday, I haven't had to take too much of the pain pills either. Now that I'm weening off of all the drugs, except for the Keppra, of course, I'm excited to see if anything really is different. I get to meet with my neurologist next Wednesday to see what the next steps are to track my epilepsy and the final results from pathology should be in by then too. I should be hearing from an oncologist soon to figure out how to track my tumor growth (or hopefully lack there of) and I should get cleared for work from my neurosurgeon on March 9. This next month will probably be one of the laziest, most boring months of my life but it's better than having a brain tumor.

Again, thanks for reading. The amount of love and support I have received is truly indescribable and having an outlet like this blog is helping me recover and acting as a type of therapy. I also hope that some day someone going through this will come across my blog and realize that they aren't crazy and that they may have a tumor and that they can do it. I plan on updating this blog regularly so if you think these are interesting please stay tuned. 

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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Intro

My name is Charlene “Charlie” Shunick and I’m a late 20-something, nearly 30-something from Lafayette, LA — but I live in New Orleans. I’m still pretty young, but my life has been pretty weird so far and I thought you might think it’s weird too.