Thursday, August 1, 2013

Happpyy Augustt!

Just a quick post about today's appointments in Hershey.

We first did some pre operative paperwork then we got to meet with the anesthesiologist. He discussed most of the procedures with us in quite some detail (I 'll spare them for Mara so she doesn't pass out <3) Above all it seems pretty straight forward and the actual surgery part of the procedure will take about 3-4 hours they think. My entire team of doctors meets tomorrow to talk about my surgery. It sounds pretty cool to me, although maybe that's just me. That means they will all make sure the are on the same page, have their plan in place, and discuss the way they will go about certain details in the OR!

After we finished that appointment we went back over to neurophysiology where I was finally released from the grips of the torturous EEG wires. The use oil and acetone to loosen the glue. It helps.. a bit. The ride home I just had oil, acetone, and the super glue they had in my hair to hold the wires in place every where. Needless to say, Chocolate World was skipped again- although this time there was amazing Hershey Cake to come home to :) - so getting the baseball hat off and the gross stuff out was a much bigger priority. 3 hours later... its still a work in progress hopefully having Mindy and Mal come shampoo me like a dog tomorrow will get the rest of it out without making my head any more sensitive.

We will head to Hershey again on Monday for a functional MRI, but there shouldn't be any huge updates for a little bit!  Thank you again for all the support. I having amazing people surrounding me and I could not be more blessed <3

Wednesday, July 31, 2013

Questions Are Being Answered! (Sorta!)

So after a crazy day in the sweetest place on Earth (Hershey, of course!) I was wiped out and did not get around to writing this post. I had all intention of doing this last night, but I have about 24 wires connected to my head (we will discuss this more later) and living with these wire for 48 hours is something to master in itself. ( I DIDN'T EVEN GO TO CHOCOLATE WORLD!!!)

Yesterday answered quite a few questions that have been unanswered for what feels like ages! Surgery will be August 12th, but the exact time of it is to be determined! It will be at Penn State Hershey Medical Center. It is a 6-8 hour surgery with a 3-4 day recovery period. (Also, I'm thinking a Pre-surgery Hershey Park Day as a distraction on August 11th ... even though that might sound crazy. I like the idea.. we will see!)

The reason I say that questions were sorta answered is because, although there is a pretty high chance it is a tumor, we will not know 100% until after they remove it and the pathologist gets his hands on it. Another thing we won't know until after surgery is whats next for recovery like radiation, chemotherapy, occupation therapy, physical therapy, or speech therapy. That all depends on what they see when they get in there and what happens when I get out. There will definitely some weaknesses in my motor and language it just depends on how long it lasts afterwards. They said it can last a few hours or it can last a few days or even longer.

I also got the electrodes that watch my brain waves put on yesterday. That took like 2 hours. There is gauze, glue and way too many wires coming from my head right now. I got to see how it records waves when I blink, laugh, and even swallow. It's really weird - they will literally know every movement I made over 48 hours haha. It is worse than big brother. I have a journal and have to record when I eat and watching TV and stuff so that they can skip over those silly waves and go to the seizure waves and the sleeping waves cause those are the most important ones!

Yesterday after getting home we talked a lot about my attitude towards the whole situation. I've been very calm and strong overall. I cried over not being able to go back to school in the fall and the thought of possibly missing out on being a THON captain which I was really hoping to do this year, but not the idea of having brain surgery. There are certain things I can't control. Surgery is one thing I have no other option for. This tumor needs to come out. I don't have a voice in that. I can't tell them to leave it in there. I guess that's what has kept my attitude so positive and very much level headed. I've come to terms with surgery but the smaller things like missing a semester of my senior and THON are things that I didn't quite think about right away when surgery was first mentioned. I thought about surgery for weeks and prepared myself for it more slowly. These smaller things are kind of getting thrown at me at times when I'm not quite ready or I have my guard down. I get bad news already and then find out I cannot start my senior year- it doesn't continue well from there. Overall, I am doing well. A little scared for the actually idea of getting surgery, but ready to have this thing out of me!

Yesterday, for inspiration, I wore my THON dancer T-shirt. Less than a year ago kids much younger than me were my inspiration to raise thousands of dollars to stand for 46. Against fatigue and muscle soreness, I wanted to stand for their strength, honesty, courage, and wisdom. Now, 5 months since I stood for those amazing children, they are still my inspiration to fight and smile. I couldn't ask for a better philanthropy to be involved in. It's a constant reminder of hope and everyday it keeps me smiling. I thought as I wrote this part of my post today I would cry, but here I am smiling and honored to be a part of THON in the first place. For The Kids. For The Fight. For The Cure.

Tomorrow I go back to Hershey to get the EEG things off (YES!) and meet the anesthesiologist for my surgery! I will keep you posted on how the both of those go. I'm hoping to go to Chocolate World... Being in Hershey two times in one week without going, that's just torture!!

Thank you everyone to who has reached out to me, in any way, shape, or form, it means the world!

Tuesday, July 30, 2013

Pre- Appointment Update!

Just a quick update to let everyone know that my major appointment today is at 12:30. It'll be a long day and I have a smaller appointment after. Don't expect my major update to be until late tonight or tomorrow depending on when we get home and how things go. Keep your fingers crossed :)

Monday, July 29, 2013

Updates From July

 July has been getting crazier than ever with everything, so I'm going to try and sum it up in bullet points. It is not even over yet and I still another appointment at Hershey to wrap up the whole month. I will do the best I can so that I don't ramble on about all the changes because each day I feel like there is something new to take on. Some days its very small other days it feels like I hit a brick wall, but either way like the blog title says, (courtesy of the bracelet Tara got me that is such a great reminder) I will get through it because I'm tougher!

- July started as an adventure with the 4th. My first day time seizure! That was my first performance with people around and it felt like all eyes were on me.

- 5 days later, July 9th I was just casually walking to class, (yet another experience) while finishing up crossing the road, two girls had to help me take my medicine.

- By July 13th it became more comfortable to be helped on the side of the road. Almost second nature by this point :P

- The medicines were increasing, but so were the seizures and so were the side effects. Headaches, tiredness, irritability. It was a slippery slope.

- Soon enough I was having more than one seizure per day.

- July 19th, after meeting with a neurosurgeon at Jefferson, I had 6 seizures that day and that number has fluctuated between 5 and 9 until today (July 28th) I only had 3. Maybe my stress levels are finally decreasing.

- Meeting with a neurosurgeon was tough, but whatever this thing is I am excited for it to come out and for the seizures to just end (I know I haven't talked about what it is exactly, but we won't know for sure until it is out so its all up for debate).

-I deferred my grade for my summer class and decided to do an independent study over the next year to make up for what I missed because of the stress, medicine side effects, how all my appointments have fallen, and when my surgery may fall.

- The most recent thing to take in is that I won't be recovered enough to be back for the fall term. That is really hard for me to take in. Missing a part of my senior year is a thought that constantly makes me sad, but I know that I will not miss all of it and will be able to go back part way through to enjoy it with all my friends!

I think that covers almost everything. If I missed anything whoopssss! We can blame it on my new medicine that causes some minor memory loss ;) Thank you for reading so far. I'll update after Tuesday. Hopefully I'll get better as I go


The Beginning to June

There have been so many changes happening in my life over the past 6 months I decided to write about it. Although I am a terrible writer, so it might not be the best decision in the end :P . It will, at least, be a great way for everyone to keep up with what is going on so I do not forget anyone in all the craziness (or bananas as I more commonly refer to it.)

I feel I should apologize for this now:
1.The same word used a million times
2. Grammar- Olivia, I'll do my best without your proof reading
3. Rambling- I can hopefully keep it to a minimum

They say the best place to start a story is the beginning. At this point most people know it or have some idea, but just in case, here is the general idea for those who don't. March 10th I woke up at 7AM with right arm and right eye movements and woke up John. After a while they subsided and we began to think nothing of it. March 19th at 2AM I woke up with the same symptoms, but this time we took more concern. After an MRI of my brain there was an abnormal finding on my parietal lobe. I went to see a neurologist in Philly. I was diagnosed with nocturnal seizures and I was put on anti-convulsion medicine.

On April 24th I had a full seizure or tonic conic seizure around 7AM. I had to go to the emergency room because it was my first one. While there I was put on a new medicine. After that things seemed great a whole month with no seizures!

I saw a new neurologist after that is from Hershey and has an office in State College for convenience. He is amazing and I am really lucky to have him as a doctor. He is constantly in contact with me and is always keeping me in the loop between Hershey and State College.

June 7th, however,  the same partial seizures started all over again. Occurring in the morning every week and a half to two weeks. This lasted all through the remainder of June.