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.