Seizures SUCK

 I guess I am now ready to share my nightmare on Emory Street.

Thie first part of the day was going beautifully. Avery is doing her senior project about me and the journey cancer has taken us on the entire year and happened to be able to skip school and join me with a GoPro for the last day of it! She followed me around, took some cool shots and I sent them home for band practice knowing mom would be there soon.

I got a little quiet time and we were all finished. I pulled the GoPro out and my mom followed me out the front door with me shooting her a big number one chemo down. I felt good and no different than normal.

About a mile away I looked at Hammond and said, “AW we should’ve went that way!” Immediately following that comment my arm started violently shaking. The next part was filled in this morning when it ALL came back to me. I was yelling go to the hospital, mom, mom and then I couldn’t talk. My entire body at this time was in horrible clenching pain like a charlie horse had taken over your entire body, but a numbness at the same time. I saw her make a U-turn in front of a silver car and then we were in stopped traffic. My mom was screaming with her hand on my shoulder, “stay with me! Stay with me!” My head kicked back in the seat, I saw a lot of light and I began choking. I couldn’t breathe and all I could think was, “I’m about to die. Wow.”

Just then a rush of pain came through me and I had air. I was aware. I could see blue lights in front of us leading the way and coming to. So much so I had my phone and tried and tried to text skip. It finally made sense and went through and I was trying for my dad. The lady with the wheelchair at the ER was yelling at me to get out, that I just had a seizure and needed to “put the phone down.” Sorry lady, I’m going to text my dad.

And then, we went in. At this point I’m a freaking mess, barely with it, fearing it would come back again. I needed anti seizure drugs NOW. They got me into triage fairly quickly, when the lady attempts to tell me, “that wasn’t a seizure. You can’t be aware during a seizure.” I told her my friend is aware during seizures. I suppose because I have perfect vitals ALWAYS, we got dropped to the bottom of the list and it just so happened they now had a FIVE hour wait!

Better yet, there is no room for immune suppressed individuals. AT EMORY!!! I was like isn’t there a major cancer research hospital on this campus?! This is outrageous. I stalled labwork as long as I could to not be out in the wait area, but it was inevitable. We all wore masks and sat literally at the sliding doors. We saw all kinds of stuff, my favorite being a 16 year old boy rush back in after their shuttle never came and his anesthesia was wearing off.

I don’t want to imagine the pain but I’ve had soe real pain and I leaned over and just tried to explain how to “pass of the pain.” It wasn’t working and me and his mother started getting REAL loud about how this was unbelievable. I had already used language at this point I would not have ever allowed to come out, but you have to understand after 6 hours, the filter was GONE. Basically, they wanted to go through the ENTIRE readmittance process!! Well funny, the un-nice lady behind the desk I think realized she too had also said some pretty inappropriate things and poof after 6 hours of waiting, we had an ER room. Yes, you read that right.

By the time the doctor came in, it was 7 hours and I not realize what this took out of me. My legs felt like I had just run a marathon for the first time. My calves were SHOT. I also at this point cannot close my eyes without seeing everything happen over and over and over. I had been up since 5AM that morning and it was approaching 1. No sleep.

I had a CT scan and another hour later we found out it showed no bleeding and that it was in fact a seizure and that we are being admitted. At 4 in the morning we were woken up and moved to an interval room. Basically, it was the area people wake up in after surgery. Thankfully I told the girl I was immune suppressed and she found us a closed room. It had a recliner for Skip and bed for me. So at 5, with one hour of sleep in 24 hours, we got two hours of sleep. I got breakfast at 8 and we waited some more. AND waited more. Around 10 I start questioning the doctor coming and find out we are the last floor for visits. ARE YOU KIDDING?! So I start calling every 30 minutes, until I told them I had to leave by noon because I was having a 1 year diagnosiversary party and that if they didn’t let me go I was ripping the IV out of my arm. (So thought of my brother here!)

Apparently telling them you are walking out is a great way to get attention. Within minutes I had an AMA form to sign and guess who walks in after Skip went to get the car? The NP. I laughed. I had already told the charge nurse how horrible our experience was and they sat in shock, shaking their heads and confirming that my story needed to be shared with leadership at Emory. I already have a number and will be discussing this weekend.

I finally escaped and Skip got me home seizure free. Scariest ride of my life and as the flashbacks continue, just when I think I’ve moved on, it plagues my mind like the worst nightmare imaginable. I fell asleep in my bed with his mom who was left to babysit me while everyone went to set up for the party.

Thankfully I am kind of OCD and when I plan a party, I have detailed details on exactly what I want. I emailed it to some crazy awesome friends and they took over. I walked in at 4:30 and was blown away. It was perfect. Better than I would’ve expected, and just felt this surge come over me. I made it. The energy kept going, my promise of sitting failed, and I gave a good 200 hugs. The cake was unreal, the food was awesome, the people were awesome, and the band knocked it out. The photobooth and wigs were hysterical, and I tried to get a selfie with every person I saw. There were SO many highlights, but I will say, the ultimate was Madison getting the courage to sing “Something Big” in front of the entire crowd! She had been SO terribly nervous and I’d even let her out of it, but her best friends kept encouraging her and she did it. She faced her biggest fear and by the end, she was comfortable and telling them, “come on one more time!” It was surreal and awesome and one of the coolest things EVER. I’m so excited for her.

I still cannot wrap my head around what all these people did for me. Skip was a total rockstar, my parents stuck it out most of the night at the hospital, my “girls” made sure this party was going to happen. I’m so grateful. I still haven’t even gone through the book or gifts but I promise I will. Thank you will never be enough for the love that was shown to us and the prayers that gave me the energy to do it.

Today was a very hard day. The dizziness got worse and worse as the day went on. My blood pressure is lowest it should go. Felt faint and fatigued all day and had two naps. I’m in bed now and thankfully able to focus on the computer. I’m going to sign off. I’m so thankful to be here. Thanking God for another day, even if it’s not the best.

God bless and with all the saints we pray for some miracle that Alimta will work. I will be moving back to Northside next week as we’ve already corresponded. I’m so excited to go back. Emory has disappointed me too many times in the last month, and honestly, we don’t need the stress. Stress can trigger seizures! So calm is surrounding the Wall home tonight. Good night.