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

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

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

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

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

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

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

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

Without further ado, here is my brain:

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

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

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

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

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