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.