Two Years

On this... the day of my two-year anniversary... I vow to blog a little more (I recently watched The Godfather 1 and 2 - number 2 is life changing). To be fair, I wrote quite a few posts throughout 2017 but I felt it was best not to share them. Most of them were at times that I was very upset about various things and once I cooled off I realized there was no point in sharing those thoughts. 

TWO YEARS since brain surgery. What is happening? Life is basically normal, although last weekend Jordan, one of my best friend's Jen, and I sat around talking about the ways that I am different. Jen used the word "blunt" but what she meant is that I'm bitchier now. It's not necessarily a bad thing that I'm more assertive but sometimes I could be nicer about things probably. It's been beneficial to me at work, but I think my friends are growing tired of my sassiness. I am still way too nice to my students so there's that. 

Brain updates: no tumor regrowth! My surgeon said based on the nature of the tumor, it's very unlikely it will ever grow back but that's not a 0% chance which means I will always worry about it. You should see me when it gets close to my MRI time... anxious, nervous wreck with a string of insomnia and binge eating wrapped around it. I had a bought of really bad headaches for about a month last year (with about 3 days of constant migraine) and I was convinced my tumor was growing back. I had already created a plan about when I would have surgery so I could recover and go back to work and how I would pay for it. But... no tumor, no cries. 

As far as seizures and auras go, it's been better but some of that stuff remains. I still get the occasional aura and it's always at the worst times... like when I'm teaching or at a party with people I don't know. No big partial seizures or tonic-clonic episodes have occurred (as far as I know, because if I were alone I may not). The generic Keppra, levetiracetam (try saying that 5 times fast), at the 2,000mgs I was taking every day was impacting my life on every level. I finally sat down with my neurologist, Dr. Peterson in November and asked if I could lower my dosage. I'm now taking 1,500mgs a day and life is brighter, beautiful, and better than ever. I take 750mgs in the morning and 750 at night and the difference is so marked. Before I was always lethargic and had nearly debilitating anxiety, and no energy. Just 500mgs less and I'm back to my old self. There is still some lethargy and some moderate anxiety but with enough sleep, a decent diet, and regular exercise I can overcome that. In defense of the Keppra... some of that could have been because I was still healing and recovering. For everyone that has ever experienced true, long lasting anxiety, I am so sorry. It is horrendous and completely out of your control. All you can do is try to make it a little bit better everyday. 

I do 100% believe that if I did not have this anti-convulsant medication, I would be having at least partial seizures greater than just a quick aura. Recently, I've developed an uncontrollable thumb twitch that happens several times a day. It's only been two weeks, but this is the type of movement I wrote off as something else in the past. I can't tell if it's muscle exhaustion, stress, or neurological so I'm waiting it out. I got a new phone for Christmas (thanks Daddy) and I've been on the computer pretty much nonstop so I'm hoping it is just over use of my hands. If worse comes to worse, I will have to increase my medication again -- but I REALLY don't want to. Another issue is happening while I sleep and it's some minor tongue and cheek biting on the right side of my mouth. I know it happens to everyone, but it happens frequently for me. I just started wearing a mouth guard this week to see if that will stop the chomping and grinding. When you have a seizure disorder (that I call epilepsy as a blanket statement), you have to figure out if you're having seizures for preventative measures. If I think I'm going to have a seizure, I don't want to be driving and hurt myself or someone else. This happened to my friend Jade recently and she literally had no idea she was having seizures until she woke up and her car was in a ditch. Luckily, she was ok.

Life updates: life is good. I'm going to put the past year in a nut shell and elaborate in later posts. Biggest news: I moved in with Jordan, and we still like each other. He and I make a good team and are truly a yin and yang couple. My parents and brother have already come to stay with us, it was really fun. My parents are almost done with renovating their home since the flood in 2016. Next big news: two of my best friends (Lyndsey and Matt) are getting married and I was asked to be a bridesmaid. Something I haven't mentioned is that aside from my super bestie Brooke, I've had a group of best friends for the last 12 years. All the girls have known each other for even longer than that, but Lyndsey, April, Dani, Jen, Meredith, and I will be friends forever and ever. Lyndsey made the mistake of asking April, Mer, and I to all be in her wedding but we have been doing a great job so far (with massive help from Loo's sister (the MOH) and cousin). The bachelorette trip is in 2 weeks -- I'll let you guys know if anyone breaks any bones. We are going to a cabin in the woods in Arkansas. 

I'm kicking my own butt at work. I was given the task of creating a forensic science lab and lecture with the hopes of one day having several classes students can take that want to go on and get a bachelor’s degree in forensic science. The class started this semester and so far, my class is going well and the students seem very excited, I can't wait to get into the dirty stuff. This summer I got quite a bit of training, I even went to a "forensic research facility" (aka a BODY FARM OMG) and I will never be the same. It doesn't matter how much you prepare, you can never prepare for seeing a human body, unpreserved, sitting in the Texas sun... and I saw quite a few bodies, at various stages of decomposition. 2017 was really a year of dead bodies, and I don't mean to sound insensitive when I say that, I just don't know how else to describe it. I went to a cadaver lab with one of my colleagues and his comparative anatomy class (excellent class, you should take it) and then I went to the body farm. It gave me a whole new perspective on life... and death. We are truly amazing animals, there's a reason we are at the top of the food chain. 

Nonprofit updates: I did my first bit of public speaking at SUNO located here in New Orleans. One of the mentors that I've been working with is Dr. Pamela Marshall that runs the Forensic Science program there. When we first met I told her about my organization and some of the research we were doing with a classmate of mine in conjunction with UL and the University of South Florida (it's HUUUUGE and I can't wait to share the findings). Pam has very similar goals for her program and thus, we hit it off immediately (thanks Clint). Pam asked if I would be willing to speak at SUNO about my experience with having a missing and murdered sister and what I have learned. Jordan and one of my bosses came with me for moral support because I knew I would be a bit of a mess, but I ended up doing very well. There were minimal tears although I did end up making half of the room cry. Speaking to students going into Forensic Science and Criminal Justice as a teacher and a human being was impactful for all of us. I hope I gave them some insight into what people on the other side of the case are going through. 

Also, as a quick note, I convinced the lead detective from my sister's case Stephen Bajat, to be on my advisory board for work. I don't know if he knew I would never leave him alone but every time I call, email, message, whatever... he responds with open arms. The Lafayette PD is filled with some loving, courageous, amazing individuals and I cannot say how much I appreciate them. 

RAMP is still kicking butt, my only regret is that I just don't have to time to dedicate to the other activities of running a business outside of paying bills, doing our taxes, and working on missing person cases. The classmate I mentioned earlier is Michelle Jeanis and she is now working at UL as an Assistant Professor in Sociology. She originally approached me about using our social media profiles to do research into missing person cases in late 2015, early 2016. When I tell you that this woman is kicking ass for missing people, it is an understatement.  Michelle and her team at the University of South Florida have already completed a massive study --publication pending-- and now we are planning on starting another one. We are looking into the impact of social media on missing person cases (FACEBOOK PLEASE STOP TRYING TO CHARGE ME TO SHARE INFORMATION ABOUT MISSING PEOPLE). She has made connections for us that I never could have done on my own. The RAMP team is still strong, and we are doing what we can. Our first priority, as always, is to work on missing person cases first, and try and raise money and reach our other goals second. Maybe one day I’ll come in and say “we got a huge grant and hired someone and everything is about to blow up” but for now, we are going to come out with our research and try to change society’s ides about missing people.

I have a lot more to say but this post is already entirely too long. I’ll be back soon with more stories about myself. The best thing about a blog is that you can be as egotistical as you want, because it’s a public diary. Love everyone, hope 2018 is treating you right.

365

It's been a weird year.

Truly, just one of the weirdest 365 days I could ever imagine. Aside from my personal issues and recovery... I mean...WOW. A lot of horrible, disturbing, and disgusting things have happened across the world. And obviously my country, America, is experiencing a truly polarizing experience with the recent election. And I would say that all-in-all the general energy throughout 2016 and coming into 2017 now has been extremely negative. I am also one of those crazy people who thinks that we all will unite again, eventually. It may just take 4-8 years...

---srsly aliens, wya?

But it has been an entire year since I had brain surgery. I still can't believe it. The journey since January 27, 2016 has been so interesting. And now my life is very close to the way it was before, with just a few changes. And before I go on, for anyone reading who is not my friend on social media I DO NOT HAVE ANY SIGNS OF TUMOR REGROWTH FROM MY 1 YEAR FOLLOW-UP MRI!!!!!!!!!!!!!! I know I got very lucky and have been an exceptional patient, probably ideal really --- because well, most of the people who get astrocytomas are either lil' kids or pretty old people --- and here I am just living my life again. I'm not trying to brag here... I'm just astounded at the incredible beauty that is science and modern medicine... and I'm so happy I can use my hand and walk and remember things and just... live.

I think I said all the feeling was back in my scalp but that was a lie, I found a little numb patch today but it is very, very small. My anxiety has decreased significantly, it is at a point where I hardly think about it at all. Still in really crowded areas or high traffic areas I am kinda freaking out... And it also seems I've developed some road rage since I started driving again (I think I scare Jordan). -But have y'all driven in New Orleans??? Seems I'm a bit sassier in all aspects of my life actually which is interesting because I've never been an extremely aggressive person. Really, now, I just don't put up with other people's bullshit as much and I never pressure myself to do things I really don't want to do or have the energy for. I will say that the whole experience has put a huge damper on my social life. But I have stayed connected with most of my friends and I'm trying to make more time for them in the future.

The medication doesn't have the same effect on me anymore either, which is to say that I no longer live in a fog and I don't feel perpetually exhausted everyday...there are some days where I do have to fight myself to get things done though. The Keppra is definitely working, the few auras that I did have over the last year happened at times when I wasn't sleeping well, or when I was stressed out and I never had a true seizure. My neurologist did say to track the auras... which I have been, and that if they happen regularly enough we will likely have to increase the medication dosage (from 2,000 mgs to what? I have no idea. I can only assume my brain is very excitable). All-in-all I had probably about 15 auras in the last year and the last one I had was November 21. I think the biggest trigger for me is definitely sleep, but I also haven't pushed my limits on drinking or stress either. Dealing with having seizures will always be a learning experience, but my few friends who do have them act like they're no big deal. Maybe one day I won't be afraid of having a seizure anymore, but I still am at this point in my life. My neurologist actually recommended I see a therapist to learn to cope with the stress of epilepsy and the fact that the brain tumor could grow back at any time. I did consider it but haven't made a decision about it just yet. It's hard being indecisive.

Most of the vertigo is also gone... I am not sure it's even vertigo, it's just a dizziness that happens when I move my head up and down too quickly (which is vertigo lol). But healing has allowed me to finally be active again. Still struggling to go to the gym 4 or 5 days a week, but I have a schedule and I've been sticking to it. My hair has also grown quite a bit where the incision was... and it has been hilarious watching it grow back, especially since I have thick, curly hair. The "shorties" as I call them have a mind of their own and they're hard to manage. I can finally tuck them behind my ears. But usually it looks like I have puffy little blonde horns sticking up off my head... I catch people staring at them quite often and whole time I just think "oh god... what are my shorties doing right now" and it's usually something weird.

Work is also going very well, I do still struggle with finding words (or what a psychologist may call the "Tip of the Tongue" phenomenon except it happens constantly) but it certainly isn't like it was. Or maybe it is and I just don't care anymore. The real issue is, is that when I do have a brain fart I can't go around and tell everyone "sorry I had brain surgery and sometimes shit gets jumbled up in my brain"... and... sadly... seems I still can't remember a lot of people. To be perfectly honest, I really have struggled with recognizing and remembering people's names and faces ever since my sister was murdered. I always thought it was because we met literal 1000s of people every day, but it is just stress. Stress is also the reason I can't remember as many words. Stress is a hell of a drug.

All in all, my feelings about the recovery and seizure disorder in general is that I have control over it. I rarely have those days where I feel "seizurey" and when I do I just take it easy and the next day I usually feel better. And I really didn't think I would say that or feel that way ever in my life. But some things really are mind over matter. I know I have thanked everyone about 16,000 times but THANK YOU so much to everyone who has checked in, listened to me complain, or even just read the posts. My family, and my friends (and colleagues because they are forced to be my friends whether they like it or not), and Jordan and his family have been and continue to be such a solidly strong support system. People always ask me how I stay so strong and it's really because I have positive energy and love lifting me up... even when I don't want it to. I'll go ahead an end this post with a throw back picture from day 2 after my surgery. They had finally moved me out of the ICU and taken the catheter out... good times.

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.