Awake again

Since the surgery life has been a blur. A blur in the way any stressful event is really... just so slow and also so fast, seems so long ago but it's also just happened. But man --- it's been over 9 months now. I feel like I'm finally back in the present and beginning to think about the future. And I gotta say, I do feel like a walking, talking medical marvel. I mean - I had a chunk of my brain removed less than a year ago and there is almost no change or difference in my life. Well.... my head has a huge dent actually... and I fear the day my hair begins thinning because I'm going to look so funny. And well, seems I still can't remember a lot of words, but this is all kind of besides the point.

I think the biggest adjustment I've had to make since the surgery is really adjusting to a life on anti-seizure medication. My complaints primarily revolve around the fact that I am always tired, always. It makes you feel just a hint of fogginess persistently and I'm sure eventually I will adjust and feel energized again. And to be fair, I have been extremely busy this semester. This effect does seem to worsen during certain stages of the menstrual cycle (and I'm really sorry to bring this up but I gotta put it down in case someone else who's recently had brain surgery reads this). But I know that seizures and epilepsy in general can be affected by menstruation and hormone fluctuations.

My second issue is that my temperature regulation is completely screwed up, meaning I think the drug is affecting my hypothalamus in some way... a colleague of mine "the other neuroscientist" as I like to call him, looked into it and it seems that may be the case after all. I cannot tolerate heat, I mean... at all. I feel like an 85 year old woman (no offense to you 85 year old women out there) but I have to sit down in the shade when I'm in an area that is hot. This week one of the classrooms I teach in regularly was super hot... I'm not sure why it was so hot, but it's been fixed and today it felt amazing. But anyway - hot classroom - one of these days it was so hot that I was in and out and feeling like I was going to pass out. And I did consider canceling class which sounds easy enough but these are 3 hour long labs and we only meet once a week. -- Obviously I made it through but I was definitely sweating by the end of that class. - Also, about a month ago I decided to go to an LSU game with Jordan and I couldn't tailgate. As soon as the sun hit me and I ran out of water I was out for the count. Like a post-menopausal woman, there I am sitting in front of the fan with a cold water bottle on my neck, taking deep breaths just about to lose it. My friends and Jordan had to keep checking on me and it really was just super embarrassing. I just want to have fun and be outside and live my life, and apparently I can't do that in the daylight anymore... maybe I'm becoming a real life vampire (without all the blood stuff). -- Side note... but even stranger, after this occurred my feet were so swollen, like little marshmallows and they stayed that way for hours. Edema, they jiggled when I walked... it was hilarious. (note: the edema had everything to do with my diet for the day and not drinking enough water, and nothing to do with the medication). I have a picture of my feet, but I'll spare you because it's weird looking at other people's feet.

A final complaint is sensitivity to loud noises. I cannot be places that are loud, it makes me immediately, irrationally agitated. Not aggressive, just extremely sassy and defensive. It's the weirdest sensation and I recognize, even at the time that it's ridiculous. Especially when it is a busy restaurant or grocery store. I don't really experience social anxiety anymore but I am certainly still struggling to do things that are loud and busy with a lot going on. Who knows.. maybe I'm just losing my mind. And trust me, I've thought about it... at this point in my life and stage of recovery it really is better to have a few minor side effects than to have seizures. Unfortunately I have had quite a few auras over the last few months but luckily, no seizures so it does seem the medication is working. And my stress and anxiety revolving around the possibility of having seizures has gone away for the most part. Some days when I'm feeling particularly bad I hope for a seizure so that feeling goes away and I know it sounds bizarre but the anticipation is just the worst. But as far as I know I have had any sort of partial or grand mal seizure, although apparently auras are classified as simple partial seizures. And my auras have a range of different times, sometimes it's just a few seconds, and sometimes they last several minutes... sometimes I just feel kind of buzzy all day long. Maybe a seizure disorder is also like a box of chocolates - you never know what you're gonna get.

It's been such a long time since I've written a post that I truly don't know where to begin. School started obviously and the semester is about to come to end now actually... I think we have about 2 and a half weeks left until finals begin. This has been a particularly busy and challenging semester so I can't say I'm not waiting for winter break. But I gotta say, my job really is super fun. And I get to do a lot of amazing things and meet a lot of amazing people.

I went into Lafayette for Art Walk in August and it just so happened to be the weekend the water gates opened up and flooded the entire city. I couldn't believe it when my dad woke me up at 7:00am and told me to move my car because it was flooding outside. The water kept rising, and rising and rising and by 9:30am water was coming into the house. And it just kept rushing in. I stood there and watched water come through the walls, it was so crazy. And my parents entire bottom floor had to be demo'd and reno'd and of course my family didn't have flood insurance like many of the residents in the area but, well... that's life I guess. We got off easy, a lot of families in the area lost their entire homes and all of their belongings and of course FEMA didn't provide assistance to many of the people who requested it. And because it's Lafayette the city came together, helped each other and got even stronger in the wake of the devastation. It was actually the weekend before classes started and I was extremely worried I would have to miss my first day of classes. Somehow I made it back to New Orleans in the 6 hour window where I10-E wasn't flooded through Baton Rouge.

This is their front yard.

 
My parent's backyard, and my mom's very large green house.

My bestie I told you all about who found out she was pregnant in late January had a perfect, beautiful daughter almost 2 weeks ago. Bailey and her husband Pete are so happy and filled with love and I already know their child is going to have such a fantastic life. I'm proud of you guys!

I renewed my membership at my gym again in early September, lying to myself that I would really start exercising again. Don't get me wrong... I tried to at first but now I haven't been in almost a month. What a shame. I've just been too tired and too busy and at work I walk at least 5 miles a day so that's kind of like exercise... right? I usually wear heels too, and I feel like heels burn more calories than flats -- no scientific evidence supports this theory though. I do think it's funny, all the lies we tell ourselves or tasks we suddenly have when it's time to work out. And as most of us know, you always feel pretty good after working out and think "huh that wasn't so bad" - maybe I'll go to the gym tomorrow (maybe not). I'm actually planning on baking a ton of pie tomorrow, for no other reason than I have a pumpkin and a lot of apples. And I feel like baking pies all day may be too time consuming to be able to exercise hahahaha. But seriously... I should probably start taking better care of my heart.

Not much else to report on really. It does seem my temporary period with no clumsiness has passed and I am back to bruising myself and breaking things on a regular basis. One of my other besties Jen claims there's a gene that increases your chances of being clumsy and I'm not sure I buy it but I really thought it was because of the brain tumor. But no.. it's really just a part of me, where there is Charlie there is a trail of broken, dirtied, and destroyed things. I can't say I've been sleeping very well either, which could be the true source of the clumsiness. Unfortunately I'm still really not able to garden, it's just been way too hot. And I am still having just the slightest blood pressure issues that prevent me from getting up and down. I'm hoping it will cool down the next few weeks and I'll be able to weed the garden and get some cold weather crops in the ground. I did harvest 2 really beautiful, delicious pineapples that took me 3 years to grow.

What else is there to say right now? Way to go Cubs, congratulations on your massive, astounding win! I love the Saints and Drew Brees is getting me so many fantasy points! What the hell is up with election and does anyone else have the dread cloud hovering over them? But still, get out there and vote folks.

It's been a long time

Well... I haven't made a post in a while. The funny thing is I've actually written 3 blogs over the course of the last few months but I couldn't bring myself to finish them. They were about various topics: one was about how frustrated I was about a few things that were going on, another was remembering my sister, Mickey, and the other was about dealing with remembering Mickey. Maybe that's why I didn't finish them. I'm not sure. May is also a tough month though, I can tell you that much.

But aside from not following up on a few of those, the main reason I haven't been updating lately is because I've been busy. And believe it or not, it's a great problem to have. I started teaching again for the summer semester. I was really nervous about what would happen at first but it has been amazing. I suppose the beginning was a little rocky because I had to review a few things and get back on a rhythm. Teaching anything requires a certain rhythm and movement through the material and that skill is learned. And it's kind of like riding a bike, you get back on and practice a few times and then you're riding miles and miles. I suppose that how it feels after taking 4 months off. I'm still struggling with remembering certain words, especially in conversation but it's usually more funny than a hinderance. And the good thing is that I haven't forgotten any of the material I teach in class. I actually think getting back in the classroom is helping my brain heal, I feel sharper and sharper everyday and my social anxiety has nearly disappeared. I'm also starting to complete tasks a lot quicker so I feel 99% myself again.

Someone from my surgeon's office called the other day to check in on me. I told him about a few different things that are still happening. He said as long as each thing was improving steadily, it's a great sign. He also said most people who have had brain surgery report feeling "off" for a long time after the surgery and I guess that's the only word I have to describe how I feel now. Things are just a little bit different now. But it's such a small difference that you just can't put your finger on it.

Monday is the 5 month anniversary. I can't believe it's only been 5 months since I had brain surgery and I'm like a normal human being again. My strength levels are fully restored although I am a weakling now because I haven't really worked out since January. I have been doing a bit of exercise here and there but mostly I'm still walking a lot. I'm still having slight vertigo issues which makes it hard to do exercises that require up and down motions or a lot of movement. I'm sure the more I practice, the better that will become. ....I will say this though... Jillian Michaels, I am so glad you and your at home workout videos exist. Thank you. --- My scalp is still numb and it has been really, really itchy this week. It hasn't itched in such a long time and suddenly I can't scratch it enough. I did go a little overboard yesterday though... I scratched it way too much. Last night, it was sore and painful to touch and now I have a killer headache today. Another wonderful mile stone in my health is NO SEIZURES! I haven't experienced anything even close to an aura since late March. Jordan tells me I'm crazy, but sometimes I can feel a seizure wanting to come and then it just stops. Maybe I am making it up in my head, who knows. But it's the same feeling I would get just before my hand spasmed --- I feel it building up and then at the point I would normally have a partial seizure the feeling just dissipates. It's probably the medication. Keppra is still not really affecting me in any negative ways. It does make you feel drowsy and since I take it in the morning and at night, I always feel kind of sleepy, but not really. And I have started socializing. I still get a little anxious sometimes, especially in loud, bright places but that improves everyday. It's definitely a thought I have in the back of my head now, even when I'm in the middle of a conversation I notice that something doesn't feel quite right. I don't know...

Since it's been about 2 months since I last posted, quite a few great things have happened. I've seen some old friends and caught up with a lot of people I needed to see. I'm finally getting some work for the non profit done again and we just finished an event in New York. We are also getting ready for our 3rd Annual Artwalk that takes place every August in Lafayette. So if anyone out there is interested, we need artists and crafters interested in hanging some stuff and donating a portion of their sales to the organization :-) :-) :-). Jordan bought a house!!! A HOUSE! That's such an adult thing to do. It's a really beautiful home, and he keeps it very clean... very. clean. Of course, I have already broken two glass things and spilled and destroyed a few things but it wouldn't be my life if I wasn't messing up something with my clumsiness (so yes, some of the clumsiness has returned... that's just part of who I am I guess). - Anyway, I also bought a car... another very adult thing to do. Having some freedom again has made all the difference in the world, I am so much happier. My friend is also pretty close to having her baby, I have a few other friends with kids but this is my first super best friend who is going to have a baby. I'm intrigued to say the least, and very excited for her and her husband!

I will be seeing my neurologist at the end of next month for my 6 month check up. I will also be getting the second follow-up MRI then. I'm not going to pretend I'm not a little nervous. The tumor could be growing back already, it's not a strong possibility ... but I'm sure I'll be nervous every single time I get an MRI for the rest of my life. But it's better to know, that avoid the fact that one day the tumor may come back and now we will just catch it way earlier.

I want to end this particular post by saying this... I am saddened and heart broken about the events that took place in Orlando. Our lives are too short to harbor hatred against any and all groups of people. Please hug your neighbors, support your community and love all people. And all of us really need to learn to stop being so damn offended by everything. Sending out my love to all of you, until next time...

Back to Reality

It's been a while since I've written a blog post. I've missed this blog and writing about my experience, and I do have a few updates and things to share. I didn't even realize I hadn't posted in a while because I'm back in the "real world" and it really wasn't until a colleague and a friend of mine mentioned it that I was like "oh yeah, it's been 3 weeks since I've posted" and to quote my colleague "you haven't blogged in a while, how do I know how itchy your head is?" hahahaha I can't stop laughing at that. For the record... it's still very itchy. VERY. ITCHY. And people keep catching me while I'm patting it. And on a positive note, my numb spot is becoming smaller and smaller everyday, although most of it is still very numb. Buttttt, parts that I couldn't feel a few weeks ago are recovered... and itchy.

Other people literally cannot believe I had brain surgery less than 3 months ago, I keep telling them it's because I'm a superior healer (which actually isn't true... Thanks a lot periods, I LOVE losing iron every month) and because I only lost a handful of neurons. To be clear, I'm not sure exactly how much actual brain tissue I lost but it wasn't very much. Probably no more than the amount you lose on a long weekend filled with mimosas and martinis and not enough sleep. Well, maybe a little more... but you get the point. I'm feeling a lot stronger, now I'm strong enough to be up to doing most things but I'm so out of shape and soft all over hahaha. Every woman's dream. The one thing I do notice is that my stamina is fairly low, I can go "full force" into something ... but only for about 15 minutes before I have to stop ... or get distracted. My memory seems to be getting better, although I'm still losing certain words, especially in conversation. --- Like, instead of using the word "drain" I might say "that covered hole that water goes into from the tub" and people look at me and they're like "uhhh... the drain?" and then we laugh together like it's a funny joke, because it is funny but it's also because there's a hole in my brain. That precious little hole. I do have these moments of "blankness" where my eyes basically cross and I lose complete focus. Jordan calls it "checking out" and he can tell by the look on my face when I do it. It can happen at any time - in the middle of a conversation, for instance. Concentrating and staying on task are now things that I'm working on hahaha. I don't feel that bad because these are things that people struggle with without brain surgery soooo... But I do actively have to try to pay attention. My headaches and anxiety are so much better. I rarely get headaches now, sometimes at the end of a particularly long day or in the morning if I didn't sleep well... and my anxiety only occurs in really really crowded places. I even went to the mall last week, and did perfectly fine. My sleeping seems to improving as well, although I have been taking a melatonin supplement before bed but I'm averaging about 7.5 hours a night on any given week which isn't half bad.

I worked out for the first time since my surgery last week. Well to clarify, Jordan brought me to the gym and he lifted a bunch of weights and I walked around a track and got on the elliptical for 20 minutes. But this is a huge accomplishment because the last time I got on an elliptical, I had 2 partial seizures after. So I'll take it. One of the biggest fears I have about being active again, is pushing myself. Anything that stimulates me also makes my hand feel weird, which makes me worry about losing control, which makes me hold back. And really.. the scariest thing about epilepsy is probably the fact that you don't have complete control. Hopefully I'll grow beyond this fear, and I know that I probably will but it's really tough constantly worrying about what will trigger my next episode, or if there will even be an episode again. Especially since I really don't know if my next seizure will be a full-blown tonic clonic seizure or just a little hand spasm or something else. And the truth is... if I do have another seizure... so what? I can't stop it, and I won't even know it's happening if it is a grand mal because I'll black out. But it's still scary to think about. But to try and counteract that fear I have been biking a bit (ok, really only twice), kind of walk-jogging, I got on the elliptical and now there's no turning back. I've been walking a looooooooot, a whole lot. I've been having to uber to work a lot more because it's not always easy to get a ride in the mornings so I've been walking home after work, sometimes. -- These past few weeks have been the rainiest weeks in history so it's sometimes hard to get somewhere on foot.

Well...This is my 4th week back at work, work is going well. I have proctored a few exams (meaning a literally sat there and watched adults take a test), which requires little skill but I had to stand and speak in front of a group of people -- which was one of my fears because I didn't want to black out -- or seizure out. For the first class I proctored, my hands were literally shaking as I was passing their exams out because I was so nervous about just being there.. But trust me... it's not the students that scare me anymore, nor is it the possibility of getting something wrong or not knowing the answer to the question. It's really just the fear of not wanting to lose it. I'm going to have to write about the first time I taught sometime because it is hilarious and kind of sad... To make a long story short, I didn't know what the hell I was doing and I was absolutely terrified. Prepared on the material, but no idea how to conduct a class, especially not a lab. Anyway, back to work stuff ... I also subbed for a class and taught a little bit. It wasn't about something I know intimately well but I did get to help students along the journey to find the right answer. I also couldn't give them answers because they were doing graded work for another professor but I told them some stuff I knew about muscles. This week a class is dissecting sheep brains so I am going to be sitting in on that later today! We get to dissect a lot of stuff (remind me to tell you about my office-mate with a jar of kitten heads). I scheduled my summer classes so I will be teaching!!! If anyone in the area needs to take a Nutrition class or Anatomy and Phys. II, hollaaaaa atcha girl. I'm excited to get back to teaching, it's so much fun.

A fun thing I did was have some wine and stay up a little too late with 3 of my best friends 2 weekends ago. They came in for a concert and to go skydiving (neither of which I could do) but we also got to spend a lot of time together. They got pretty tipsy and we had some wine and champagne. One thing I have been thinking about is how to pace myself and adjust to not being able to go wild anymore. And I didn't feel pressured to drink more or less... I very easily stuck to my glass and a half of wine or champagne. The good news is, I'm a VERY cheap date now. Sunday morning we had some mimosas... 1 and a half mimosas later I was drunk and they were all just looking at me like... "we don't feel tipsy at all" hahahaha. And even better... even though I had a little bit of booze two days in a row I did not have a hang over, nor did I have a seizure the next day. So I can still be a little fun, I'm just not going to be taking tequila shots or funneling beers anymore (I know, I shouldn't be funneling beers anymore because I'm 28 but I live in freaking New Orleans).

My THREE month mark is coming up next week and I can't believe it. For all the stress and tears and money and time... it's been a very steady climb back up (or back down off the mountain top, really). Luckily I am pretty young. One of my latest irrational fears is that the tumor will grow back when I'm a little older and it will be much harder to heal and get back to normal. But, truly, the worst part about my life right now is constantly worrying about seizures, not being able to drive, and not being able to take baths. As "first world problem" as this sounds... not driving is a massive burden. I don't know how people do it. I really don't. They must plan out their whole day based on when and where they can get a ride. A lot of cities have very poor methods of public transportation and New Orleans is no different, especially if there's no access to the street cars... which of course there isn't in my neighborhood. And I could take the bus... if I want to leave 3 hours before I need to be at work (that I live less than 3 miles away from). But my options right now are: asking someone to come pick me up and bring me (which my lovely friend at work does often), biking (which is probably a little dangerous), walking (which takes 40 minutes but I am lucky to be able to do), or ubering. Generally speaking, I uber in the morning... which really isn't so bad. But yesterday, there was a convention in town so my normal $5 or $6 fair was $12 instead. It's not really an issue of money though more than having no real control over when I get somewhere and when I leave. It's either a nice long walk, or waiting on a friend or Jordan, or trying to direct an uber driver around our campus. Our campus is an massive issue because none of our parking lots connect, and the uber app drops the GPS marks at the wrong building all the time. I had a mini meltdown about not driving last weekend because I'm just tired of depending on other people. It's nice but it's also hard, especially because I really like to do my own thing and now I can't... to a certain degree. And not taking baths... oh noooooo, I miss my human soup soaking time.


I finally haven't seen any doctors in about a month. They're all incredible and I respect and appreciate them, but I was so tired of going from one doc to the next to the next. I do see my neurologist in June for a general check up, and to make sure I'm not feeling anxious or seizurey but life is definitely good again. I know I'll be very familiar with hospitals for the rest of my life but I never want to stay over night in one ever again. I hope everyone has a wonderful rest of the month. For all my teacher friends out there... only 3 weeks left until a blissful summer. Unless you're teaching summer classes/school.. then only 3 weeks until we get 3 weeks off before classes start again!!

Two Months

And just like that... it's been 2 months. While everyone was enjoying their Easter Holiday (if you celebrate it), I was celebrating the 2 month anniversary of my surgery. It was an unexpectedly emotional day for me for multiple reasons. Mostly because I went back to work the following day and I was being a big baby --- But also because I kept thinking back to 2 months before and reliving some of those feelings. I had no idea what my life would be like after January 27, the day of my surgery, and I was so afraid. It's funny because the day before my surgery I was with Jordan and his family and the day before my 2 month mark I was with Jordan and his family. So I guess not too much has changed, but at the same time I do feel like a different person. It's hard to explain really... And well, my time off of life certainly wasn't a walk in the park, and it wasn't really very relaxing. But here I am 2 months and 3 days later and I'm walking, talking, typing, painting, working. I mean... WOW. Who knew brain surgery would be so... routine? But to say the least... Sunday afternoon Jordan brought me home and I cried all day while I got ready to start the work week.

I did have a very lovely day with Jordan's family for Easter, and I survived a family party with a bunch of people. And if you know Jordan, he has a lot of family. I come from a family where only my immediate family lives in Lafayette (the rest are all up north, hellooooo cousins), and a majority of his family lives in New Orleans so they do a lot together. Lots of laughing, loving, hugging, and none of it bothered me one bit! So at least I know my social anxiety only relates to strangers and people I don't know. I have a feeling the next big, human-filled event I attend will go very smoothly and be perfectly fine. Too bad I missed/will be missing all the fun stuff... R.I.P. 2016 Mardi Gras, Birthday, St. Patrick's Day, Festival International, Jazz Fest. Maybe next year.

So... yeah... I started work this week. And just like everything else, I was extremely apprehensive about going back. And it wasn't because I would be doing work again (ok, maybe it was a little bit because I would be doing work again) but it was because I was afraid to interact with people again. I was worried I would come back and have a seizure and never be able to work there again. Like they would have just thrown in the towel and been like "look, you can't teach here but can we use your health as an example in all of our classes?" And oddly enough, my quality of sleep last week and thus far this week have been very, very poor. I actually think that having to set my alarm, gives me anxiety now. How do people who struggle with a lifetime of anxiety actually live? --(on the positive side, my anxiety is rapidly decreasing every day). Back to work --- Instead of me freaking out and inconveniencing everyone, it's been lovely. My colleagues have been and still are so supportive and I've been welcomed back with open arms by everyone. And, just like every other job, everyone knows everything. To be fair, some of them read this blog and it's not like I'm keeping anything about the tumor private here. Anyway, they have my doing a bunch of different things at work that are actually really great to know... and will surely help me be a better teacher but really just a better employee at school. And I'm planning on teaching this summer, if any classes are available (we are all like class vultures, waiting in the dark for another one to open so we can jump on it).

Other than that, physically I feel really, pretty good. My incision is almost completely healed and I think my numb spot is a little less numb. I do have one big old bald spot that is really hard to cover up no matter which way I part my hair so I'm just trying to trick myself into thinking it's adorable and unique instead bright, pink and circular. Really, it's kind of cool to show people and talk about my plate. I can't wait until you can feel the plate so I can let people touch it. I think I can feel one screw ---- but I also may just have a really lumpy head. My scalp is still driving me nuts it's so itchy (and all I can do is pat it, so if you see me slapping my scalp, that's why). -- but I finally started using some of my old products again and there doesn't seem to be any problems with them. Thank God because the hair I have has to be tamed - at least a little bit - by several products. I also had a follow-up MRI 2 weeks ago and Dr. Dumont said everything looks excellent. Complete resection, signs of positive healing, no sign of tumor regrowth. I'll take it!

I have been walking at least 4 or 5 miles almost every day. I'm toying with the idea of biking a few miles this week, but of course I'm a little terrified of that. What if I fall and hit my head and my titanium plate pops off and my brain comes out of my skull and I die? I know that won't really happen, (and obviously I'm going to wear a helmet) but I never said I was rational. Ok I'm sort of rational, but I never said I think rationally... My memory still has some gaps, mostly my vocabulary, I just draw blanks -- all the time -- for the simplest words. And I have been experiencing some pretty serious fatigue, meaning the two point five days I have worked makes me want to come home and go to bed at 8:00pm. I've also had some pretty bad headaches - they feel like mini-migraines and have persisted no matter what I do... I think all of those things are probably related to: stimulation, human interaction, a schedule, having to wake up early, etc. So again, all of these things will get better over time. I still can't believe the strides I have made in just 8 weeks time. From not being able to type or get up off the couch or walk more than a mile to living my nearly normal life (thinking of you, car). And... well... I really miss taking baths. I am a bath person, human soup if you will, and when you may have seizure you can't take baths or swim by yourself. And well, I live alone.

No real updates on my friend Loren and her family and how they are doing with the discovery of her brother. The case is very high profile there so I'm sure they haven't had time to breathe or think, on top of grieving the loss of Dan. Of course, everyone there is speculating about how he wasn't found for so long when he was on their property and trying to raise flags about the circumstances surrounding his disappearance. Because a family who spent 5 years, running a 24/7 international campaign for their missing loved one definitely was responsible for the disappearance and death of their person... sometimes working in missing people becomes very, very hard again. And it's times like these where I wonder why I do this. And then I remember that I do this, so that some of the ignorance that surrounds the world of missing people will hopefully be reduce eventually. That's what I hope my legacy will be.

I want to take the end of this to thank everyone again for sticking with me. This journey so far has been very tumultuous and it has been much easier with so much love and support from my friends and family and colleagues, and kind strangers. I'm sure there will still be interesting stories to tell in the future, but for now I'm still using this as a life journal. Should that blasted astrocytoma ever grow back I'll be able to read through this and know exactly what to expect. Instead of using google as my main tool of reference. I'm also really happy I'm still young (enough) because the healing has been so much easier. I hope you all have a wonderful week, happy spring!

Life Really is Weird

Well, I skipped last week so here we are at week 8, this Sunday the 27th being my 2 month mark. Hard to believe. I really didn't have too much to write about last week because, well, I haven't been doing much. But since I didn't update last week, there's a couple things to update on today...

The pathology results are finally in and it literally couldn't be any better, unless there was no tumor to begin with. They downgraded the tumor to a Grade I Astrocytoma, which is considered benign, or at least the most benign of all the astrocytomas. The weird thing about them is that they're extremely rare to begin with and found mostly in the cerebellum (an area of the brain stem) of children and about 60% of cases have a genetic link. Well, I'm not an adult and it was found almost as far away from my cerebellum as you can get and I'm in the 40% who just grows a random tumor with no relation to DNA. To quote the radiation-onc. "I'm just not someone who likes to follow the rules". They're so rare in adults that there's not much information on them online and I still haven't met with my oncologist to get the prognosis/statistics/general 411. I had my second follow up MRI last week and there are signs of healing and improvement and no sign of tumor regrowth. In other words, this last week has been a good one. The good news is I definitely don't need radiation now. 

My incision is almost completely healed but I do have still have a few bald spots. Luckily, I have so much hair I can just cover it up. My scalp is still extremely itchy... like an itch that cannot be scratched... and it happens to be on the numb spot. I know this is a sign of healing, and I have previously read that it is a problem but I didn't understand how itchy they meant. It's painful it's so itchy. The things I want to know are.... how does a numb spot itch and how are you supposed to scratch an itch on a numb spot? It seems to be located on top of and around where the plate is. But I still can't use too many products because I'm still doing some healing. I asked the doc and he said that should stop after 6 months... sooooo only 4 months to go! Maybe the itch is one of those things you get used to -- but as I'm typing this, I can feel it. 

Other than that, everything is great/getting better. I've been walking more, painting more, reading more, and seeing some people a little more. I am still having some slight vertigo issues, but I have been feeling much more energized. My medication seems to make me colder when it's cold and hotter when it's hot. This summer should be just amazing. If you see the sweaty outline of human being somewhere, don't worry... it's just me. I go back to work next week, and all parties agreed I should not teach the rest of the semester. So I will be learning other aspects of my job that I should have been learning this semester anyway. I went out to a kickball game and saw a bunch of my friends last week. My team changed their name to "Charlie's Angels" which is adorable and I'm honored that they did that, they all feel like part of my family. Hopefully it is temporary though because No Basic Pitches is the best name ever. I also didn't feel a large amount of anxiety when socializing with a whole lot of people which is a huge improvement from just a few weeks ago. 

Anyway, I know this is off my usual topic but I wanted to dedicate the rest of this week's post to my friend Loren O'Keeffe and her brother Daniel...

I met Loren on Facebook in late July of 2012. At the time, I was getting a lot of messages from people due to my sister's missing person campaign. Loren really stood out to me, because she was the face of her younger brother's missing person campaign. We started off Facebook messaging, then we skyped and texted, and then she told me she would be in New York and I was there. Oddly enough, she isn't the first best friend I met on the internet, I'll have to tell the story about how I met a gal named Bailey and ended up being in her wedding. In fact, there were many similarities her and I shared, especially in search of our missing siblings. Loren and I are also both very sassy, and have bold personalities, and decent senses of humor. Although, I will say that she is certainly more assertive than I am and she has an excellent sense of business...both of which are things that I am still learning. I had the pleasure of meeting Loren in real life in New York city in 2013 and then I went out to Melbourne, Australia for the website launch of a missing person guide Loren designed for her organization Missing Persons Advocacy Network (MPAN). You can see her organization's website here: http://mpan.com.au/ and the missing person guide she created here: http://www.missingpersonsguide.com/. Loren is the person who inspired me to start an organization of my own, especially after seeing the amount of time and energy it took to build a website. Loren and I formed an unbreakable bond and I can't express the level of connection that we share and always will...we have helped each other through many tough times and I know we will continue to do so in the future. I have met many other people who have suffered from missing people and even some other people with missing siblings but no one quite like Loren.

You can see pictures of us here, the first was in Oz and the second was on the Brooklyn Bridge in New York:

When Loren and I first spoke it had been a little over a year since her brother, Daniel, went missing. He was struggling with depression and anxiety at the time of his disappearance and the last place he was seen was his parents’ home in Highton, Geelong. Depression is one of the most common illnesses in Australia, and estimated 45% of the population suffers from it in their lifetime. This created an ongoing battle between the family and the police. The police believed Daniel had committed suicide and the family believed he was living on the streets. For nearly 5 years, Loren has run a tireless campaign to bring her brother home safely. His case was very high profile in Australia and there have been sightings of Daniel all over the country and well... the world. Just like we ran the "Find Mickey Now" or "Bring Mickey Home" campaign, Loren created the "Dan Come Home" campaign. You can see the campaign website here: http://dancomehome.com/. The most impressive part of all of this is that Australia doesn't have missing person resources (meaning no police task forces dedicated specifically to missing people, no search and rescue teams, dog teams, etc.) the way the United States does so the O'Keeffe family has been working 3 times as hard. It was long believed that Daniel was out on the streets, living as a drifter and the possible sightings seemed to confirm that. Unfortunately, on this Monday (March 21) Dan's remains were found on the property of the O'Keeffe family. The same place where he went missing from. The oddest thing about discovering him there was that multiple police and civilian foot searches have been conducted on the property. It is possible the Daniel was gone for several months and at some point returned to his parent's property. You can read more about the story here: Daniel O'Keeffe Found. 

And this is Daniel:

From what Loren and her family has told me, it seems that Daniel was an amazing person. He was kind and gentle, smart, strong, he worked with kids and he brought a light into the room when he entered. And Loren and Daniel were very close, she is extremely protective over her baby brother. To sit here and try to describe the amount of pain I know the O'Keeffe family is experiencing right now would be impossible because the pain is impossible. When you have a loved one go missing, there is always the thought in the back of your mind "what if they're dead" but you try and push that away. Mostly because it's awful but also because people don't get as involved with missing person cases when the person is presumed dead. I haven't figured out why yet, it's just a trend. The problem is that pushing that thought away allows for terrible scenarios to manifest themselves. When I first got the phone call that Mickey was found I remember being so angry and wishing that she was just still missing. At the time I thought, surely a missing person is better than a dead one. But after the grieving period was over and I had time for reflection, I realized that knowing and having closure was, of course, the better option. 

Now that I am remembering my sister, nearly 4 years later, I am so grateful that we found out what happened to her and were able to recover her. I wouldn't change that for anything, other than having Mickey still here and alive. And I know right now Loren and her family are extremely angry --- probably about everything --- especially since Daniel has been with them the entire time. But I know in a few months, or a year, or several years from now they're going to look back on this and also be grateful that they now have peace. Living with the unknown truly is the worst part of having a missing loved one. And I don't know what happened to Daniel and I am very sad that he was recovered deceased, like many people I hoped that he was simply living on the streets or in the bush. But I am also happy for the family since one day this will bring about closure. It's so bittersweet to even describe it this way because it's such an awful situation. I don't know what else to say other than believe it or not - having a deceased loved one is better than having a tortured, starved, beaten, cold, dirty loved one. 

I know that Dan would be very proud of Loren, and probably also embarrassed about the fuss that was made over him. But she has really taken a terrible situation and channeled it into her community and country. The missing person guide and other resources she has established for other people are absolutely incredible and I am glad to see her community is putting love back into her and her family. Through this very difficult time I hope you will all join me in sending as much love, prayers, positive energy as we can muster to the O'Keeffe’s. I love them very much and I hope they come out stronger in the long run. I also hope Daniel has found his peace through the pain that he was coping with. 

Trial and Error

Well it's been another interesting week here in the Recovery Zone. Last week I did have an "epiphany" of sorts: I'm getting a second round of firsts. Every single thing I have taken for granted can now reshape itself into an exciting "first" after my surgery... I'm not sure if that even makes sense honestly. For example, I walked to this nature trail about a mile and a half away from my house, for the first time since my surgery; everything that I do now feels just a little different now... better in a way. I truly can't describe it. My energy levels have increased which means I've been a little antsy... which means I've been moving a lot more. So this past week has consisted of me trying different things and seeing what I can and can't do. There's still no word on pathology... how? Why? I also finally have some insight into my work schedule for the rest of the semester which means I'm making plans for the future!!! Bout time.

And here we are...week 6 and there are some definite changes taking place. As I stated, my energy levels are way, way up. Nowhere near my "normal" but I'm finding myself to be less fatigued than I have been. Naps are not a part of most of my days anymore. Last week I walked more than 10,000 steps every day except Sunday (well, according to my Fitbit). My walks have all been 2-4 miles straight which is such an improvement. Just 2 weeks ago I could barely make it 3 miles and soon I'll probably be walking 5 miles and so on. I definitely feel myself getting stronger as well, my pace has picked up alongside the distance. ---it's so weird being at this stage right now when a few months ago I didn't even consider walking a real exercise, more like a warm up... now it's THE exercise I do. The weather has been especially perfect lately in New Orleans and the walks have been helping me remember my love and appreciation for this beautiful city. There's no place quite like New Orleans, this city has soul.

Now on to the trial and error of things I can and cannot do (other than the things I've been told explicitly not to do - which is quite the list). I walked really far one day, like 5 or 6 miles, but to be fair I took quite a few breaks on that trip. I also listened to music for the first time since my surgery... and I gotta say: it was different. I know this sounds weird but I like music more now..? Maybe it's not really true... but subjectively... I enjoy music more now. For the past 2 or 3 years I almost completely abandoned music, with the exception of rap (maybe this is how I should have known something was up?...idk). But instead of music, I only listened to podcasts... day and night... on road trips and at the gym and on the way to work. Now, I can't stop listening to music, all music. It just sounds... better, the way I remember it feeling to me when I was younger and "music was life". It's just one of those weird and funny things. I also tried out 2 of my favorite hobbies: painting and gardening. The painting was pretty much the same, except after a while -- especially during the fine details -- my hand gets so tired that it refuses to grip the paintbrush. But I know that specific strength will develop over time. -But as far as style, feel, etc. goes, everything else is the same. The gardening on the other hand, did not go very well, I dare to say that I still can't/shouldn't garden, at all. It wasn't the physical labor part or the heat or anything. But the up and down and up and down required by weeding and planting was just too much for me to handle. On several occasions I felt like I was about to black out so an hour and a half after I started, I was inside on the couch trying to get the world to stop spinning... but I may have a reason as to why that is happening. The good news is, I didn't pass out and I did weed my 2 flower beds, the following day I got all my bulbs into the ground too. - maybe in a few weeks I'll be doing that in a more timely fashion. I also can finish lectures! It was taking me about a week and a half to complete them before and now I can finish a lecture in about 4 or 5 days. 

Last week I met with Dr. Dumont, the surgeon, for a second post-op follow up. We went through the regular thing, which is basically me using him as a factual WebMD (in case you haven't heard, don't trust the internet for a diagnosis). One thing I have noticed is pretty intense vertigo when I move from lying down to sitting up or move my head up and down a lot (hence the world spinning during gardening), or when I lie flat on my back. The doctor said that's relatively common but if it doesn't go away in a couple months, I'll have to go get my head rotated or something? (This is where I begin to lack all knowledge on random procedures). But, I can tell you that in our inner ear we have these cells that move the way we move, so I jump and those cells move up and fall back down, which is how we know where we exist in our own universes (relative body positioning). Well, during and after brain surgery, those little cells can get thrown off which makes me feel crazy when I move too fast or too much. Certain parts of the healing incision are also a little "juicy." I know that's horrible way to describe something, but I am drawing a blank on a better word here... and I'm not sure what that means. The numb spot is itchier and itchier everyday so I'm assuming it's from me scratching it. Dr. Dumont also recommended I take another 2 weeks off of work... and the real kicker is that we decided I shouldn't return to teaching until the summer. People keep asking me how I feel about it... I mean work also agreed that I shouldn't get back in there unless I'm 100% ready. But I love to teach, at the same time, passing out or losing it in front of your students probably isn't a good thing to risk. And my schedule this semester ranges from being at 8:00am one day to being there until 10:00pm another. But I will be returning back to work later this month, I just won't be returning to teaching... not yet. I haven't mentioned my colleagues much, but I gotta say that I am very lucky to have all of them. They have been so supportive and have gone above and beyond what they needed to do to help me out. And even better, I didn't feel any stress or anxiety while I was there and interacting with some of my friends for a short visit this week. I actually felt a sense of peace. Anyway, the doctor also said I need to get another MRI so next week I will be getting yet another scan of my brain, I feel like a professional now. In grad school we used to pay people to look at their brains... if there are any scientists out there who want to study me... I'm all yours.

So... pathology...where could it be? I have no idea. If anyone has any guesses, feel free to throw them out there. 6 weeks down and still no final word. It has driven me so crazy that now I can't even muster a little bit of care. But I did get some insight into why it has taken so long and the short story is... snail mail. They use the mail to send tissues to other labs and half of the time it's been out, it's been in transit. Maybe they secretly lost it? ...I wonder how many people have looked at my tumor/brain at this point, at least 5 or 6 (cool). The oncologist told me as soon as he had the answers, he would call me. We had hoped to hear yesterday but it should be sometime this week. I'm keeping all my fingers crossed because this is kind of the last piece of the puzzle. I'm tired of seeing doctor after doctor and would just like a little break for a couple weeks. But I guess that's part of the game. This actually reminds me of a TED talk one of my friends shared with me last week: https://www.ted.com/talks/salvatore_iaconesi_what_happened_when_i_open_sourced_my_brain_cancer#t-606953. This guy is an artist and he decided to take it upon himself to share pictures of his tumor with a large community of artists, friends, scientists, etc. instead of sitting around waiting on tests results. He welcomed insight and opinions from the masses and after surviving his surgery and recovery after cancer, he is sharing his experience with people. If you have a few minutes, check it out. Anyway, I think his video offers so beautiful insight into what's going on in your head during this experience; he also has a great sense of humor.

I know I still have a long part of the journey left to go and the recovery period isn't over. But I guess one of the weirdest things about this week was that I felt relatively normal...like I wasn't really being held back from anything anymore. I mean I still can't drive and I still don't want to be surrounded by people, but other than that I feel like the original me again, and I'm much less anxious. I saw a few friends, I hung out with Jordan, I maintained a very loosely structured schedule, and I did some of the things I really love to do. It's amazing how much growth has taken place from week to week since January 27. Some weeks have been fine and others have been horrible but things are moving forward. 6 weeks ago I had no idea what life would be like now, and 6 weeks has always been the goal period to be recovered. And here I am... recovering, but not quite there yet. I am actually mad at myself for not being where I wanted to be at this time, but looking back I realize that I have truly come a very long way. I won't say this has been easy, and it certainly hasn't been fun and relaxing but it has been a learning experience. And I do recognize that things could have been so much worse. But this is my life now... and that's just kind of weird.

Adventures in Tumorland

Why did I think the surgery would be the end --- it really was only the beginning. And seriously, how did I not know I had a brain tumor? Why did all of this happen now when it could have happened at any time in the the last 4 years? There could have been a worse time, I guess, but not really... I just started full time at work and I had a month-long event happening for my nonprofit. I didn't really get more than a week or two of work in and I didn't get to attend a single event for my organization, which I'm sure the owners of the establishments are like "who does that?" I also didn't get the monthly newsletter out last month, for the first time in a year and half... so as a President, I am failing right now. Shout out to my board members and team though, those girls stepped up and worked on several cases while I was out of commission (I also may or may not have worked on a missing person case while I was in the hospital... ok I did, I did work on a case while I was in the hospital. He was found safe and well).

Not much has changed since last week or the week before. Jordan and I went to see the oncologist last Thursday and he said because pathology isn't in, he can't tell us what the next steps will be. He pretty much said the same thing everyone else said. I'm not going to lie, I had a breakdown Friday. HOW CAN PATHOLOGY STILL NOT BE IN? It has been over a month, I have to go back to work soon and I still don't know anything about the tumor or what the next few months of my life will be like. --- and in all seriousness, what exactly is taking so long? It's making me very nervous. I would rather them take their time, I guess, but this is really starting to drive me nuts, it really, really is. Everyone keeps asking me "when are you going to do this?" "when are you going back to work?" "when are you going to get a car and be driving again?" "when are you going to start getting out and about?" "are you doing radiation, will the tumor grow back" and I can't answer any of those questions because I don't even know, pathologically speaking, what exactly was wrong with me... and my doctor's can't say either. The oncologist wanted us to see a radiation-oncologist Monday of this week but we pushed it back to wait for pathology. I'm tired of going to doctors only to hear "there's not much they can say because official pathology isn't in."

Other things have gotten way better, Jordan and I went to lunch in a really crowded restaurant this past weekend which would normally have given me a near panic attack (and maybe did give me a mini one). As we sat down I definitely felt the walls closing in and anxiety creeping up my back, and I even cried a little bit. But I decided to stay and we made it through. --- eventually that anxiety did subside, I just felt a little on edge. Of all the side effects... WHY does it have to be social anxiety? I like to be fun and do fun things with my friends and now I'm like "human beings... nooooooo." It is getting better though, I have to admit, a few weeks ago I wouldn't have even walked into a busy restaurant.

But what is funny, is that I realized the other day that as much as this is a blog about experiencing a tumor and seizures and finding out all of these things... this is also a romance. Even though Jordan is a guy's guy and a bit of a hardass... this has been quite the romantic situation (and he will probably kill me for writing this hahaha). Typical hero - damsel in distress storyline. And Jordan has still been taking very good care of me and making sure I'm taking care of myself. I never was the type to gush over a man/guy but this guy is just such a wonderful person, and he doesn't put up with any of my shit. He always keeps me on my toes and pushes me to be better. He's smart, and he remembers every, single detail and word that every doctor has said. And... well.... he just remembers everything in general (drives me nuts because I can't ever win a debate haha). And I'm just here to make him crazy hahaha, which he has been taking in stride, but he's also begged me to stop googling things.

Now on to the point of this particular post.. how did I miss that I had a brain tumor, especially an astrocytoma? Since I haven't had much to do but I do have a connection to the internet I would say I have spent approximately 60% of my recovery time googling things about astrocytomas. You will see that generally the symptoms for a low-grade astrocytoma are subtle but present, and those symptoms can be masked by many other problems. Also, because my tumor was slow-growing, my symptoms were also slow-growing. And as we go through my adventure with the appearance and growth of my tumor you will see that rationalized every single one of the symptoms I experienced. Most the symptoms are pretty general but some are specific to where my tumor was located: headaches (especially in the morning, or ones in the same spot that never go away), nausea, weakness on one side of the body (my right), change in personality, change in taste, short term memory issues, twitching, seizures are very very common with all astrocytomas, speech differences, change in mood --- and depending on where you look, the list can go on and on. And in case you haven't noticed, these symptoms can also be seen by people suffering from extreme stress or while they're going through mourning/experiencing grief.

As you saw from my last post, the tumor was relatively small and there were only slight signs of swelling toward the bottom (inferior) part of the tumor. Also, as we dive into this I don't actually know exactly when my tumor started growing. It could have been there my whole life, but more than likely it's only been around for 4 or 5 years and started growing a little more when my hand seizures started. Also, the biggest issue was that these symptoms occurred in a period of transition and growth in my life. I was living alone in a huge city where I had like 6 friends, I was in graduate school, my sister had just been murdered after being missing --- so a lot of huge changes were taking place all while my symptoms began.

    The headaches and nausea: I did have a lot of headaches and nausea... a whole lot actually. But I have always been a very poor sleeper, my entire life. I can't fall asleep, I can't stay asleep, and usually if I open my eyes and there's sunlight  I am up for the entire day, even if I only slept 3 hours the night before. I also have a history of a very bad (acidic) stomach --- I had acid reflux as a child that I had to be treated for and when I was 22 I suffered from stress-induced gastritis which still gives me problems now and then (mostly when I'm stressed or consume too much alcohol). So I thought the headache and stomach issues were related to those issues.

   Weakness on my right side: looking back I did experience some weakness, but it was very slight. And where the tumor was growing would have affected my right leg more --- in fact, the surgeon was very surprised that my hand was giving me more trouble than my leg (see: homunculus of the supplementary motor cortex). But when I was 12 I tore a PCL ligament in my right knee playing softball. There may be a surgery now, but at the time there wasn't. And my knee gives out ALLLLL the time. Looking back on it, it probably partially due to weakness caused by the tumor, but also because I am missing a ligament there. My hands are also funny, and I got clumsier and clumsier as I aged...I thought I was just doomed to be quirky and awkward. I would grab something or pick it up and suddenly drop it or throw it across the room. I tried to make it charming but it was kind of awkward --- especially when I was teaching (I would pick up chalk and drop it and it would shatter and I was just look at my class like "ugh, why?"). The positive thing is, I am pretty sure I'm way less clumsy now. I haven't dropped many things, or tripped over anything, or knocked anything down, or thrown anything across the room lately.

   Change in personality: Since I was under an immense amount of stress and I was going through a "growing" period I assumed my change in personality was normal. But it was probably the most notable of all my symptoms. I used to be very carefree, extremely outgoing and friendly, loud and just a total free spirit, less stressed out ...just different. I would put experiences and fun above a lot of other things. Suddenly I was quieter, more conservative, pretty shy and less talkative, less willing to go out, and just more closed-off --- and mostly I noticed that I became extremely self conscious. The positive side of the change was that I became more goal-oriented and career driven (and that has stuck around). I thought this was a natural part of growing up, and it is but it was a marked, and rapid change. I remember getting back to New Orleans after graduating and seeing all my friends here and them being like "what is wrong with you? you're different and so boring now" and I cried and cried and knew it was true and didn't know why I didn't want to do the things I used to enjoy doing. And I really didn't like some of those people I used to love. I really thought it was because of my sister and the whole experience of going through a high-profile missing person case. I met a lot of people and got recognized in a lot of places and the last thing I ever want to do is talk about my murdered sister to a complete stranger (no offense). So I figured that's why I had less of a desire to go out and talk to a lot of people in really public places. Which could very well be true.

   Short-term memory issues: this was another big one that I wrote off as other issues, which very well could have been due to other problems. As far as fact-based information and learning goes...my memory is still/has remained pretty solid. Obviously when I first got back to school after finding my sister, my memory was very poor due to stress and lack of sleep. But as time passed I noticed quite a few ongoing problems: forgetting appointments/meetings, not remembering anyone's name or face (and I mean I couldn't remember anyone at all, especially when they were in a different setting than I was used to), forgetting specific words -- my vocabulary really took a hit (and now it seems to be even worse), and forgetting small things friends and I discussed. All of those things are relatively normal and happen when we get busy and age. But the not remembering faces and names really freaked me out. I assumed it was mostly because I had met literal 1000s of people during the missing person campaign and then continued to meet more after. But it became worse and worse and this started happening with people I have known for years: high school friends, people on my teams, people I have spent hours and days with. It was bizarre and started becoming a bit of an issue... in fact, it got to the point where I was actually afraid to use people's names because I thought it would be wrong. So for those of you out there whose faces I couldn't remember and names I forgot --- I'm sorry, it was my stupid brain tumor. I have no idea if this has gotten better yet, so if I still forget you --- I'm sorry, there's a stupid hole in my brain.

   Changes in mood/taste/speech: I definitely noticed, oddly enough, that I was way more positive than I used to be. I thought I was just crazy, or delusional... but I like being positive. And now I'm grumpier and more "realistic" and I'm hoping that goes away --- because even though it's not practical, I'll take my rose-colored glasses any day.  My tastes changed a good bit, in that I became vegetarian for 2 years which is something that I never would have done before. But I will say this: becoming veggie + regular exercise cured my depression, anxiety and insomnia after my sister was killed. Now I am a meat eater, with a veg. heavy diet --- the best of both worlds. I am maintaining a heavier vegetarian diet now, though. And most obvious was my change in speech. Just like with my clumsiness, my speech also became a little clumsy. When I got excited or had to speak too much, I fumbled over all my words. I would have to literally stop and reset my mouth to rephrase what I was trying to say. Obviously, this was even more apparent to me because I talk a lot for a living. I thought this was a part of just being more self conscious, stressed, and closed off.

   Seizures: we have discussed this. If you hand spasms uncontrollably... don't ignore it. There was also a situation where I almost bit the tip of my tongue off in my sleep which had to have been due to a seizure... don't ignore that either. And hope you're with people when you have a grand mal so they make you go to the hospital.


You can see a picture of the tongue below, again it is NSFW:

I don't mean to freak anyone out, look it up, if you're experiencing some of these you probably don't have brain cancer/tumors. But also, if there are persistent things that have been worrying you get them checked out! MRIs and doctor's visits are expensive but so are funerals. Thank you for walking down the path with me through this journey. I'm still just waiting and waiting and waiting on the final word for pathology so I can start getting on with the rest of my life. Hopefully next week I will have some insight into the tumor.

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.