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seizure

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Back-To-Back Seizures (Kinda)

Well toots. I had another seizure on Saturday. That’s a fast turnaround since I just had a seizure a few weeks ago. Never a good sign. I was playing with my nephew, who had just finished his peewee football game. His older brother was suited up on the field. We were swinging on tree branches, between practicing touchdown dances, when all of a sudden I felt the seizure coming on. I looked at my eight year old nephew, who didn’t even know what a seizure was, and by the tone of my voice, he knew something was very wrong. I told him, with my bug eyes, to get Dan. I slowly followed, pulling pills out of my purse. There was so much excitement, the fans cheering for the players on the field, kids throwing balls, girls taking SnapChats with their friends, laughter, yells. There was nowhere quiet to go. I put a pill in my mouth and chewed it, hoping it would seep under my tongue and enter my blood system fast. Dan came to me, pulling off my coat since I had lost control of my torso. I always overheat when there’s seizure activity, so it’s important for me to get cool as soon as possible. He gently rocked me down to the ground, supporting my neck. He then ran to get water, and ice, and a few people started to ask if we needed the trainer, or a medical professional. I was able to tell them it was nothing to worry about, that I’m epileptic, and will be fine in a minute. A big fear of mine is being put in an ambulance, and being placed in the hospital, but we were able to avoid that issue. I don’t know what I would have done without Dan. As…

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Post Seizure Update

I’m back! I took a hiatus, had to get back on my feet. The seizure was a doozy, although, it wasn’t a grand mal so I’m grateful for that. It all went down because I borrowed my mom’s carpet shampooer, and I used her noxious cleaner. (Our house is normally a low chemical zone – I’m a baking soda, vinegar, organic, kinda girl.) A few minutes into the cleaning, I started getting lightheaded. I didn’t realize in that moment that I was already in the seizure. Somehow I grabbed my medicine, and a phone, even though I don’t recall making a point to do so. I wandered out to get fresh air, I felt like I was shuffling through a chemical cloud. The smell of the cleaner was so overwhelming that my brain felt like it was choking. I went to a semi-shaded area of the yard, and although it took a long time of staring at the phone, not understanding how to work it, I was eventually able to hit redial which was my parent’s work number. At that point, of progression, all I could say was, “It’s happening! It’s happening! Get Dan. Get Dan.” I was unable to hang up the phone, and could hear them scrambling to find their cell phones. I could hear their panic, their dialog. Then I heard the dead dial tone beeping. I remember closing my eyes, and for the first time during a seizure, I started praying. I prayed to the rhythm of the beeping. “Thank you for my life. Thank you for my life. Thank you for my life. Thank you for my life.” All in all, it wasn’t a short episode, but by the time I realized that it was okay to relinquish control, that I was fooling myself by…

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The Carrolls meet THE Carroll

I’ve been up since 4:00 am and it’s all because of a seizure. I’ve had a seizure in my sleep before (according to Danny – I don’t remember it), but on September 11th, just a few days ago, just at the same time as the anniversary of the twin towers collapsing, I was jolted out of bed, screaming to Danny that I was having a seizure. He jumped into action, knowing fully what to do, but I couldn’t stop myself from screaming, “Water, pills, water, pills, water, pills, hurry, hurry!!!” It was like I was in a trance. A trance where you can’t feel or move your right side. A trance where you have no control over your body, or your mind. It was powerful, but not a grand mal. My whole right side, from the tip of my toes to my cranium was tingling and throbbing. I was paralyzed, even unable to drink on my own. Danny held a glass to my mouth as water sloshed all over my face and neck, soaking our mattress. When the seizure subsided, I couldn’t talk or think or make sense of what had just happened. So here I sit in the dark while most people sleep. I don’t sleep because I’m afraid to. I don’t know how long this fear will last, and I know it will abate, but I wonder if this new experience will stick with me forever. Will I always have a deep-rooted fear of a sleep seizure? Is this going to haunt my dreams, nestle into my subconscious? Ever since I was diagnosed I’ve been afraid to miss anything. I want to soak up life, to enjoy every moment. But sleep is paramount too. I’m not sure what I’m going to do about this new found issue. I…

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Chelan Man Triathlon Recap

Dan and I had so much fun at Chelan Man yesterday, it was AMAZING. I had always been intimidated by multi-sport races, the transitioning made me nervous. Not to mention I’ve never had a decent bicycle, or swim goggles, etc. We didn’t have the trendy triathlon gear, and we didn’t know what we were doing. We went into this race with two goals: to complete it, and have a blast along the way. But by going into this experience not worried if we’d look dumb with the wrong outfits, and nubby mountain bikes (borrowed at the last minute), by going just for fun, just to live and try something new, it removed all the pressure. Because it’s not about what other people think. It’s not about proving stuff, or worrying about trivial things. That race was for pure fun. To challenge myself and get out of my box, to try something new. As for the race itself, we fell to the back of our “wave” of swimmers to have some space, but just a few hundred yards from the shore Dan was kicked in the head and took on a bunch of water. It took us a bit to get his lungs cleared, and for him to get a good pace again. One of the volunteer lifeguards even tossed a frog floaty for us to share back and forth as we swam. We kept that for the duration of the swim leg. Yep, we were THAT bad at the race. But it was so funny! Dan and I were just laughing and swimming and enjoying every second.  From the swim we transitioned to the bike. It took a bit for me to get my rash guard, helmet, socks and shoes on, but once we both rehydrated we took off up…

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UCLA Results

I finally mustered the strength to call UCLA for my MRI results. They agreed with the UW radiologists that there is no visable tumor. The fun twist is that instead of automatically planning my next MRI with a Dopa PET at UCLA in October, they recommended that I just stay here in Seattle. If the Seattle MRI shows up questionable, then I will need to fly down for a Dopa PET. So now, all I need to do is keep fighting, stay healthy, and have no new growth in October. Not having to fly down to UCLA would be a huge relief, both financially and emotionally.  Flowers from Danny after the good news… My brain is still hazy and slow after my seizure, so this is all I have in me to write. Like an earthquake, there are aftershocks of energy throughout my brain and at times it feels touch-and-go so I really need to force myself to rest. As it always is, I know the threat will subside the longer I make it from the seizure. I just have to be patient. For now I will relax, falling asleep for my nap with relief, and a smile. I can deal with seizures for the rest of my life, I’d be happy to. Compared to the tumor, they’re just like gnats. Annoying, but I can live with them.

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Attack Followout

I’ve been depressed and I’m embarrassed to talk about it. In fact, I’ve been avoiding the topic, hoping it would just get better – but it isn’t getting better. In fact it’s getting worse. It’s not like every moment of every day is horrible, but I feel trapped. I’ve become agoraphobic due to the auras and seizure. I’m afraid of getting too hot, becoming too stressed, getting stuck where it’s too bright, too noisy, too many people, too intense of questions, of hearing a Romanian accent, the speed of moving vehicles, the list goes on. I know I sound ridiculous, and I’m disgusted with myself, but I’m just completely overwhelmed. I worked my way up to Eric and Laura’s wedding, resting the week before, mentally preparing myself. I really, really wanted to go the wedding, and I was nervous, but I made it. Originally, I felt like it might be too much, and I asked Danny to go without me, but he refused. He didn’t want to leave me. So, I pushed through to make sure I could make it. I didn’t want to be the reason why Dan wasn’t able to attend his best friend’s wedding. Everything worked out fine, we had a WONDERFUL time, but now, getting back to life with the move and everything, it’s tough.  It’s incredibly hard to understand the waves of dizziness, of the overheating and physical dynamics that happen when my body is stressed. It can come in an instant, when you’re least expecting. I’m terrified to leave the house. I’ve tried getting to the store, or for a walk or two – always with Dan, but I feel unsafe getting very far away from our home. We’ve had to cut our outings short, or the fear overcomes me as we’re just leaving…

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I’m Back!

I’ve been writing and erasing this blog post for two days. I keep trying, but there’s just so much that has happened. It’s all overwhelming. There’s so much to say, and yet I don’t even want to think about it. On the other hand, I want to purge, to barf it all out and then maybe I’ll feel better. Thank you so much for being patient with me. The past few weeks have been a blur. I’ve had an aura while shopping at Bed, Bath & Beyond and a small seizure the next day at Target while shopping for a new shower curtain and bath mat. Too bad I didn’t figure out the connection until it happened twice. After that, I was home bound. I was lightheaded, dizzy, and slept 15-16 hours a day. I didn’t leave the house for a week, and I was still incredibly dizzy and nauseous, but I was desperate to get to a counselor to talk about what happened. Instead of trying to get on two buses to get to the therapist, I scheduled a taxi. While I was riding in the taxi, we didn’t get more than three blocks from my house, I had an aura. I desperately pleaded to the taxi driver to stop the car. He had been talking, and his accent was similar to my attacker’s. I don’t know if it was the stress from the moving vehicle, the light from the sunny day, the fact that I was headed to a counselor to talk about the incident, or the accent that put me over the edge. I asked the taxi driver to slowly get me home and I had to cancel the therapy session. I also rescheduled the appointment for the following day with the detective so that Dan could…

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Keeping The Door Open

I’ve been researching, trying to decide whether or not I want to pursue this clinical trial. Can I handle another brain surgery? Danny would kill me if he knew I told, but tears started running down his face at the idea. He remembers how much pain I was in, and it took months and months for it to subside. I had so many complications, and now I’ve had a massive seizure and a few auras, albeit it was almost a year ago. Brain surgery is not a simple procedure, and the brain is a delicate beast. Also, my type of brain tumor is not like the others – most have clearly defined borders, mine is diffuse, it’s infiltrated, it’s intertwined with healthy brain tissue, it’s messy, complicated, and dangerous. With a brain surgery, I could die – anyone in my position could. Due to the location of my tumor, I could become paralyzed. I could lose the ability to process speech. Is it worth it? Here’s a video with Dr Linda Liau the neurosurgeon at UCLA who is conducting my prospective clinical trial. This dendritic cell therapy is the most effective and promising treatment to ever exist for brain cancer patients. It’s a pretty big deal. This dendritic cell therapy treatment could cure me. That concept is very appealing. According to the research that we’ve conducted, there are several supplements that could also cure me, however it’s exhausting trying to juggle the various combinations, playing trial and error until we get the results we want. I’m just getting started with the supplements, I’m taking a gazillion pills each day, and the dosing is all dependent upon my previous pill set since they’re time dependent. I constantly have to keep on my game, up on my schedule, and it’s exhausting. If…

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Warning: Graphic

Well. I did it. I went in for the “little” procedure to remove the rest of my naughty mole that wanted to turn into cancer. I kept my chin up and tried my best to joke with the DR & the assistant, telling them how bummed I am that they’re working on my smaller breast. They laughed with me, and kept the mood light. I made it through the numbing (which they warned me would cause my heart rate to increase), it took three shots of numbing stuff, and soon, we were on our way. As soon as they started cutting, I could feel tugging, and snipping. All of a sudden, as I was trying my best to power through, my hands got really sweaty, and a wave of nausea came over me and I knew I was having an aura. I tried to keep calm, knowing that freaking out makes the seizures come on faster, exactly what you’re trying to avoid in that moment. My parents were out in the waiting room with my purse where I keep my pre-seizure pills which efficiently stop the auras from turning into a full blown grand mal. I quickly said, “Guys, can you stop. I’m having an aura, I need water now – cold water – and I have a pre-seizure pill in my purse in the waiting room. I need it. Please go get it. RUN.” It was so scary. The assistant ran to the waiting room and grabbed my purse from my mom. In the meantime, the DR soothed me, helping me drink the cool water. When the assistant arrived back in the room, he took out two pills and I placed them under my tongue, waiting for them to dissolve. In the meantime, I practiced deep breathing, and the…

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Can’t They Feign Interest?

This photo is of the only thing that really put a smile on my face today. I’m down. It’s been a long time since I’ve felt this sad. Truth be told, in my doctor appointments yesterday, I didn’t even whisper a word of my “alternative” protocol. I didn’t argue, or give off any sort of attitude. I listened to what they had to say, and asked a few questions. They did not care that I haven’t had a seizure in over 5.5 months, they want me on medication. They did not care that my brain tumor had scanned as “stable.” They did not smile, they did not encourage. I’m now sure that it must say, “stubborn cuss” in my file because I have refused seizure medicine, and I have refused radiation. In my main meeting I told the oncologist that I’m not necessarily against seizure medicine, or radiation, I just don’t feel like it’s necessary at this time. He was not amused, and strongly disagreed with my opinion. The doctors do not believe in little successes in my situation. They didn’t care that I had been seizure free for almost half a year, or that my tumor has not grown in the past three months. How is that? How can they not care? Or even feign interest? How can they look at me, and handle me in such a way? They see me as a terminally patient that is going to die. How can they not throw me a bone and smile at the little victories?! They look at me and they see a dying girl, when no one else in the world sees me that way. They’re looking at statistics, not at me, and that makes me frustrated. They need to look at ME, at my specific situation. I…

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