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 the shaking and twitching waned, the emotional release of the seizure loosened tears that streamed down the side of my face. I was so relieved that it didn't turn into a grand mal. I was actually thrilled that I had managed the episode in a calm way. That it was relatively under the radar, and aside from the throbbing headache, I was able to take a group picture right before we snuck out. I was out of it - I don't even remember taking the photo, but I'll never pass on the opportunity to commemorate outings with my sweet little nephews whom I absolutely adore.

I hope that I didn't scare them. I ended up with a droopy face for several hours. It was fine if I was toothy smiling, but the half-assed smile was the dead giveaway.

I have to say that this seizure episode will not stop me from running around getting crazy with these cuties. However, I might need to spend a few minutes prepping them for a future episode so that they know what's happening, and that it isn't anything to fear. If I explain it the right way, with a nice coloring of humor, they might even think it's kinda cool. Usually, life is all about how you handle it.

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 trying to command a different outcome, I just stared up through the semiopaque leaves, observing the rays of sunshine between, while tears streamed down the sides of my face.

When I'm in a seizure, I never know how bad it will get. I've had all sorts: absence, petite mal, semi-partial, grand mal. Depending on if I'm able to get my medicine and ice water, or a little sugar, it can escalate quite quickly.

They always start in my right hand, and climb through the right side of my body. As it spreads, there are checkpoints in my mind, that signal different levels of severity that I recognize in those moments. I will think to myself, as I'm trapped, unable to control my body, "Oh no, it's spread. Oh is that my right leg? Shit. Shit. How bad is it going to get? Is this going to crossover? Am going to have another grand mal? Should I try to roll on my side so I don't choke if I vomit?" And sometimes, like this last episode, I couldn't move my body at all to roll, to protect myself. I had to submit to the reality that everything was out of my hands. In times like that all I can do is hope that I won't wake up in the hospital, which has happened.

One boundary is my right shoulder. If the seizure spreads past my shoulder I know it will spread down my whole right torso, and right leg. If it makes it up to my clavicle area, I know it will go all the way to the right side of my face and then skull. For me that's a 4.5 out of 5 alert, with a 5 being a grand mal. Those are the whole body attacks - both sides, and I lose consciousness. Fortunately, I've only had two, and by fabulous miracle, I didn't pee my pants either time, which is quite common for those types of convulsions. So, I'm at a 100% dry pant success rate. Small but happy victory!

I did not lose consciousness with this seizure, however I did blackout for the hours afterward. I don't remember Dan taking me to bed, or whether or not I woke up and talked with him about what happened. Maybe I even slept all the way into and through the night, I have no idea.

Seizures are so crazy. It's as if my body gets possessed. I have no control. In those moments, I feel like I'm a puppet. It manifests as a physical aberration, and can end with a total brain fry, loss of consciousness even vomiting, urination, defecation, and injury. So far, I've been able to have Dan drop my pants so I didn't wet myself. I've vomited during/after the seizure, and have yet to poop myself, and hope I never will. It's all quite unpredictable, and I don't assume anything.

Legally, at this point, I could drive, but I'm too scared to do so. I've been walking or jogging when I needed to get stuff, or to meet people, or graciously they come to me, and Dan just picked up a bicycle pump for my tires, so I'll be on my own set of wheels very soon. Don't worry, I'll start slow and be careful to not induce a seizure while riding. I actually didn't ride a bike for a few years after I started having seizures because the movement was seizure inducing. Once I decided to say screw it, I can't live in fear, we joked that we were going to put adult training wheels on as an added security measure. We never did, but I like that we still have the option if needed.

When you're living with active epilepsy, you have to find creative ways to continue to live your life and have fun doing it! The last two weeks have been good to be homebound, I've moved all of our furniture, we switched bedrooms, I've gotten creative with my cooking because I couldn't just get to the store whenever I wanted, or at all unless Dan was around. It's amazing how lucky we are to be mobile. I'm soon to be beach-cruising around Edmonds, rain or shine. I'll have to plan extra hours to do the same thing, like get to the grocery store, or added time to get to appointments. I'll need to learn how to attach my bike to the front of the metro bus bike rack, which is intimidating, but not the end of the world. It certainly won't stop me!

This is a whole new world of adventure. I may have dialed back on speed, but a forced change of pace may just be what I needed.

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 live life big. I laugh and jump and dance (albeit ridiculously), but I'm fearful too. I may be the happiest yet most terrified person on Earth. I'm scared every single day that the mass in my brain will grow. I'm scared every single day that I may be one of the ones who die young and I won't be able to stop it. I'm scared every single day I'm eating the wrong thing, drinking the wrong thing, putting the wrong product on my body (the toxins), that I'm too near the wifi, that our water has too much crap in it, that I'm not exercising enough or that I'm exercising too much. But what permeates the most in each moment is that I'm scared every single day that I will have a seizure. And now, to add to the list, I'm scared that I'm going to be woken up mid-seizure. It's like waking up to the fire alarm, but it's not a drill, there's a literal fire in your brain, and it's surging through your body. And when it's over, you're ravaged. You're wiped. You're almost ruined, but you know you have to rebuild. And with any disaster, it's the aftermath that takes the most work.

The irony of everything is that I was jolted out of bed with that nasty seizure on the morning I was to go to a Seahawks practice. The day I was going to meet coach Pete Carroll. Dan was temped to cancel because I wasn't making sense and my face was droopy, but I begged, and I pleaded, and he tilted his head, squinting, and said okay. The unfortunate part is that one major side effect of my seizures (although I'll bet it's common with many) is memory loss for about 24-36 hours. So, being the stubborn cuss that I am, not wanting to miss out on the opportunity, or wait one more day to meet Coach, that I will have to work very hard to remember our special time at the Seahawks practice. The whole day was surreal. I shook hands with Bobby Wagner. (What? Yep, that happened. He may be my new favorite.) I watched Beast Mode get stretched out right in front of me. He was talking - I saw it. I watched Sherman bounce around from crew to crew. I noticed Russell working on the QB stuff, I could see the smoke drafting from his ears with the laser focus. I chatted with the Seahawks crew, and laughed. I tried to push one of the things that the linemen push, the metal things with the pads that simulate the opponents, and I'm pretty sure I moved it a millimeter. When the practice was over we talked with Coach which was awesome! There's an amazing familial vibe, a camaraderie. Everyone was jovial, but dialed in. I joked about how I wanted so badly to run out there and jump in, to race anyone who was willing, but of course I stayed on the sidelines. We were the only onlookers that weren't part of the team or media. It felt crazy, and profound. I have a deep respect and love for the way that Coach Carroll handles the sport, the players, and life. He practices with the players, running around, sweating like the rest of them. He believes everyone has the chance at greatness, his motto, "Always compete."

The older I get, and especially since I was diagnosed, I don't enjoy competing as much with others (maybe it's because with cancer, we can't all win and it's not our fault - it's often out of our control), but my internal competitiveness has never gone away. It's what helped me strive to learn the alphabet, and talk, and read, and write again. It's how I was able to start walking as soon as possible, aided by Dan, and my friends and family. I always knew I could do better, that I could do more. And I still look to challenge myself (even if it turns into a hysterical near disaster like the recent triathlon). If life was a drink I would gorge myself, while trying to jumprope and cook dinner and garden and read a book and run in circles. I want to do it all as much as I can. But in order to recover from all that madness first, I'll have to get over my seizure fears, and just get some sleep.

The lair.

Wait, what's that? Oh ya, we're here with Pete. 

An O'Carroll family photo. 

My, I can't believe I'm at his press conference face. As he walked away, he jokingly said, "And any further questions to you Dan and Jess?" Ha! Good one Coach. Yep, Pete Carroll knows our names.

The TSA checking the busses, and gear so that the team can just roll up to the plane. They were flying out to St. Luis when we rapped up. Go Hawks!

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 the hill. The bike felt really weird though, and right as I pumped up to the top, my tire popped off. No joke! I called to the spectators and said, "Help, I think my chain or something fell off!" A guy came running and then another guy and all of a sudden it felt like I was in a Nascar pitstop, power tools whizzing, within (I swear) two minutes I was back on the saddle headed away. Rolling away I was low fiving spectators and hollering thank yous. I could hear Dan behind me chuckling. 

The bike ride was probably the most fun; Dan pulled up the rear and let me set the pace. There were water stations along the way and I would roll up slow and tease to tell them I was coming through the car wash, then they would spray me with a hose, or bottled water. It felt so good! There's nothing better to wake you up than being doused with icy water on a hundred degree day. Quite shocking, but it'll certainly cool you off.

When we transitioned from biking to running, we racked our bikes, drank some more water and started running, but almost immediately people started hollering because we were running the wrong direction. Ha! We are the worst triathletes! We might as well have been Abbott and Costello. The run was a little tough because the heat had really climbed. The route was out along the highway, the heat swirling up from the asphalt. There were a few times when I worried I might be in seizure danger zone, but Dan helped me take my rash guard off, doused it with cold water, then draped it over my shoulders. My icy cool cape really did save the day.

You'll see below that my mom took lots of pictures. My parents are so wonderful. They came with us to the race, and cheered us on during every leg. It was just shy of a hundred degrees very quickly and to have my parents there cheering, and laughing with us, was a lot of fun. The day was one of my favorites, one that will go down in the record books. 

I can't believe we did it. I can't believe how hard we laughed (mostly at ourselves). It just goes to show that everything in life is really fun, even when you don't know what you're doing. Even if there are literal obstacles. Dan was legitimately kicked in the head. My tire popped off. We ran off in the wrong direction, and yet it was one of the most fun days of my life. 

The Pit Crew: My Parents

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.

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 and I stay home while Dan runs errands. I wish I could explain how it feels. It's a combination of getting nauseous, feeling like your body is melting from the inside out, internally combusting. Imagine a wax figure melting down, that's how my body physically feels when I'm having an aura or seizure, or that I'm a robot that has been sprayed with water, that I'm short circuiting. 

I'm working all of these issues with my therapist, and I actually have homework - I'm supposed to get out of the house every day. There's different specific tasks, but it's too much. Even before this attack I still didn't leave the house every single day, I was too tired. The homework alone from counseling is more exhausting that I normally have to deal with. 

I feel trapped, fearful, exhausted, scared, distrustful of my body, and incredibly sad. If you've never had a seizure or an aura, I don't know how to explain it accurately. It's horrible.

At this point, I only leave the house with Dan or someone from my family. I'm afraid to try and get out and then have a seizure out on a random street as I walk. I'm terrified to not be able to call for help. I'm terrified to push it and make things worse. I had no idea that this attack would hurt me so badly, that it could effect me this much. That it would immobilize me, imprison me, and completely ruin my quality of life.

Theoretically, I know I will get better, but my soul and my heart are hurting. Sometimes, this journey is harder than I expect. 

Thank you for the birthday wishes yesterday. I am officially 32. All day I thought about when Dan turned 32. A month later, I was diagnosed with my tumor. Poor guy. He didn't exactly have the best 32nd year. Although mine is getting off to a rocky start, I'm hoping it will just get better and better. 

It was a beautiful day, and I was able to fill it with wonderfully happy things like weeding in our little garden, painting a little mirror, unpacking the bedroom, doing laundry, painting a wall, visiting with Meghan, and watching the Olympics. I did more in a day than I would usually do in a week. It was fabulous, but I'm worn down. Perhaps that's why I feel so sad. That, or the fact that I'm dealing with quite a bit. Hard to say. 

Birthday flowers from Meghan

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 join me. I was afraid that I might have an aura, or a seizure, and I needed the moral and physical support of Danny. Dan knows tricks to stop an aura from turning into a seizure. He keeps ice water near me, puts the pills under my tongue, helps isolate me from bright lights, and sounds. He gently massages my scalp or temples, and gets me breathing regularly.

So, tomorrow morning, my dad and I are going to leave an hour early for a new counseling appointment. He will pull over if I'm dizzy or sick, or if I start to get vertigo (first step of an aura). We will give an hour to get 15 minutes, but I am determined to get mental help. For the first time in years, I really need professional help to get through this.

We've postponed the UCLA tests twice because we were afraid of my health situation, the stress could induce seizures. We were supposed to fly this Sunday and I would have the tests Monday, and Tuesday with a brain surgery on Thursday, but I am in no state for a brain surgery, let alone travel. We spoke via email with my fabulous neurosurgeon, Dr Liau, and told her everything. She agreed that it would be best to put off the trial until I'm back on my feet, when I'm emotionally, physically, and mentally healthy. At this point, we are expecting to continue the testing and brain surgery sometime in the middle of October. We feel that this will give me the time to get back to walking, then running, to leave the house and make it to the grocery store with company then finally on my own. I have not left the house alone since my first aura. I have not made it to a store since the seizure over a week ago. I just walked the lake with Danny for the first time two days ago. I am taking baby steps, and I'm still dealing with an incredible amount of stress due to the ongoing criminal investigation (not to mention our landlords who are friends with the maintenance man...things have been ugly).

I appreciate all of your support, so does Danny - and of course, my whole family. I will get through this, just like all of the other little things that I've conquered in the past. No one will keep me down. I have more health issues than most, but I know how to slowly work back into a normal state. In no time, I will be independent (able to leave the home alone), healthy, and happy again.

After my therapy appointment tomorrow morning, the sexual crimes detective is coming by for my statement. Tomorrow will be a HUGE day. More than once I have wished that I didn't have to report this crime, that I could just fall into a bottle of wine and never discuss what happened ever again. But I know that if I remain silent, this pervert will attack another woman in her home. And maybe next time it'll be worse. I never would have expected this man to hurt me in any way, and that, in my opinion, is the worst kind of offender. They make you feel safe, then once they gain your trust......

I've sobbed a bunch, and have been so confused, but I know that will survive this. This trusting island girl needs to recognize that there are very bad people out there, and sometimes your flags don't turn red. It makes me sad.

After such a serious post, I'd like to share a fun text message that made me laugh...

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 I could be cured with a brain surgery and a few dendritic cell shots, heck, it sounds promising.

It costs $500 to be reviewed by the team at UCLA for the dendritic cell therapy, and in order to keep the door open, I decided to just go for it, and pay out of pocket. Luckily, this morning my mom reminded me that my insurance provides the right to get a second opinion from a new oncologist/surgeon etc. So, a few hours ago, I emailed my oncologist's nurse to get a referral to Dr Linda Liau at UCLA. I was hoping that this way my insurance would help cover a portion of the $500. Unexpectedly, my oncologist said that he wanted to read the clinical trial before he would refer me. What the hell! Are you serious? He should just refer me - it's my business. I feel like my oncologist always wants to be the one to make the decisions. I emailed his nurse back and told her the details of the trial and then gave her Dr Liau's email address. I told her that the Dr is very prompt, and that I would be contacting them again tomorrow.

It's my humble, uneducated, opinion that if I want a referral for ANY reason, my doctor should just refer me. Period. I mean, seriously, there's a chance that Dr Liau's team might reject me after reviewing my MRIs. I might not have enough tumor tissue, or my brain tumor might be too integrated into healthy tissue to safely resect. My oncologist has no right to delay my progress. This is not his clinical trial, he needs to step back. He'd better not get in my way....it's making me upset....in fact, I'm mentally toilet papering his house as we speak! No one, no thing, is going to get in the way of my healing.

I still don't know if I even want to do the trial, but at least, I want the option to be accepted. Why close a door on any treatment? I think it would be foolish of me.

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 boys calmed me down by discussing puppies. They were serious heros, so kind.

I made it through the rest of the procedure which lasted about 45 more minutes of cutting, tugging, and then two different strands of stitches, both inside and out. They separated the skin from the tissue and pulled them together, yanking, and that might have been the worst part. That or the cauterizing - one of the places they cauterized I felt a deep burn. Ouch. I honestly had no idea what I was getting into. I thought this was going to be more routine. I've learned that I can not handle awake procedures. Next time I'm going to have to tell the DR that they need to put me asleep or something.

Even yesterday, and this morning, I'm feeling completely nauseous, and ill. I feel very vulnerable for seizures right now. I can't explain it. It's just a feeling that I get. That's why I didn't blog yesterday. I'm trying to take it easy.

It will be one week before I can get my heart rate up, so I guess it'll be easy to keep things light and simple. I'm dying to run through. That always makes me feel better. When I get to the seventh day, I think I'll be like a race horse just bursting through the gates.

I emailed back and forth with a friend recently and she told me to just listen to my heart and that I'll know when it's right for me to start driving. It is painfully obvious that I should not drive for a long time. I shouldn't even think about it. Although we had been clear for the past 5.5 months of little to no auras, this one was very severe. It is a miracle that we were able to stop the seizure. What a relief. I just need to focus on being healthy, exercising, eating right, sleeping well, and worry about things like driving later. I will not put other people in danger just because I want to go to Costco to save on Dave's Bread. Gotta keep things in perspective. I'm just grateful that I can walk to PCC. A few extra bucks to avoid running someone over is quite a deal!

Here's a few photos of my little missing mole. Sorry, it's totally gross, and pretty graphic, but this is a blog to share about my journey. Hope you aren't offended:

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 feel like the kid in class that causes too much trouble, so the teacher is seating me in the back and doesn't even care if I learn anything - I'll just be bumped up to the next grade for the next teacher to deal with it, or I'll "graduate" to death.

"Minimal" & "Stable"

Oh sweet baby kitten, I have great news. We recently received an email from my radiation oncologist, and things are lookin' pretty damn awesome! Let me start from the beginning though...

Friday morning, I had an unusual calmness for an MRI day. I just felt different. I wasn't sure if it was just insane mind control, or a sign of good things to come. Before the MRI started, I asked for an upbeat radio station - they pump music into your headphones to make the experience nicer. I usually choose something slow and relaxing to calm my nerves, but last time I got stuck with a barrage of heart wrenching ballads. It's no good when you're tearing up in the machine. Anyway, this time the young tech picked 106.1 which, according to their website, is a combination of "Top 40 and hits of the 80's and 90's." I literally was busting a mental move, wanting to shake my tail feather. It was AWESOME. They kept playing all the songs I already have on my MP3 player, so I kept flashing back to runs around the lake, visualizing my favorite Green Lake memories. The final song, as they wheeled me out of the machine, and removed my headphones, reminded me of my adopted (not literally, figuratively) little sis, Kristen Linde. It was Brittany Spears, causing me to grin from ear to ear. Priceless.

The MRI took a bit longer than expected, so as soon as I was dressed and found Danny and my parents in the waiting room, we rushed downstairs to the radiation oncology department to meet with my radiation oncologist's nurse.

As they checked me in, they took my vitals and my weight, 144. Then we waited in our room for our RN to give us the results from the MRI. As we waited, we visited and laughed. I was pretty stoked to be weighing in at 144 considering the fact that three months prior I weighed in at 159. Quite the weight change. When our RN came into the room, the first thing she said was, "Wow. You look incredible!" That is music to any one's ears, but especially a cancer patient. It shows that you're doing something right. Anyway, RN said a couple of pleasantries, then asked if we'd like to see the scan. Of course, in unison, we happily replied, "YEAH!" She looked right at me and said, "Well. I'm not going to lie to you, IT'S NOT GOOD! Follow me." My heart sunk to my feet, but I stood and followed. We walked around the corner to the computer screen and watched RN flip through the scans as we asked questions.

RN pulled up the October scan, and the April scan to compare the exact same slides. That way we could see the changes. In comparing the October and January scans, it did look like Herman had grown. It seemed obvious, but later, we realized that the magnification was different! That's a massive error in comparison. As RN continued to say how bad the MRI scan was, and continued to measure Herman with the diagnostic tools, our hearts sank and we felt baffled. It was later, when received an email from my oncologist (forwarded from RN) that we realized that RN doesn't know how to read MRIs very well. PHEW!! We were so scared, so disappointed, and all for nothing! Here is a direct quote from my radiation oncologist:

"There is a nodular region of T2/FLAIR signal
 hyperintensity without enhancement along the anterior lateral margin
 of the resection cavity measuring approximately 10 mm x 16 mm x 11 mm
 on images 602/130 and 603/105 which is similar to minimally increased
 in size compared to October 2011 study where it measured
 approximately 9 mm x 16 mm x 11 mm. Otherwise the T2/FLAIR signal
 hyperintensity surrounding the resection cavity is stable. There are
 patchy foci of nonenhancing T2 hyperintensity within the lower
 medulla which are similar compared to October 12, 2010 and April 15,
 2011 brain MRI which could represent posttreatment changes or less
 likely artifact; these findings are not consistently identified on
 prior MRIs.  No abnormal enhancement. No new mass lesions."

Now, here is where things get REALLY crazy. I pulled up the radiation report from October 25th (the last MRI). In the findings it states, "There has been interval progression of nodular area of T2/FLAIR signal abnormality at the anterior margin of the resection cavity compared to multiple prior examinations dating back to 10/12/2010 that is suspicious for tumor recurrence, measuring 11 mm x 10 mm x 16 mm..." Now, if they're measuring the volume of the tumor, the order of the numbers shouldn't matter, right? And if that is the case, then the numbers match up with Friday's measurements which would mean that the tumor did not grow at all. Anyone have any thoughts on that? I'm confused, but excited and hopeful. The other thing that we noticed, was that Herman is not as bright as he used to be, showing a lack of tumor cell density. Which makes sense because I feel great! 

This coming Wednesday I will meet with my radiation oncologist, a new neuro-oncologist, and a specialist that deals with seizure medications. They're still trying to get me to get back on seizure medicine even though I've been seizure free for almost 5.5 months. Sometimes I wonder where common sense, and logic are found in the heads of doctors. No doubt in my mind, they are insanely intelligent, and I need them in my life, but they just can't seem to get out of their train of thought. Just because I've had two seizures, does not mean that I need to be medicated. I am self medicating with nutrition, exercise, sleep, and meditation, and it is obviously working. Why can't they see that? Ugh. 

Anyway, I'm so excited to share this news, I hope you find it as hopeful as I did! We are on the right track with this artemisinin and artemether. I'm still going to do the high doses of sulforaphane on my off days with the artemether, just to do a double punch. I'm so excited for the next MRI. What a change!! 

Things I've learned from this most recent MRI:

1. Don't just listen to the first person that reads your scan. They may not have enough experience or education to truly diagnose or determine. 

2. Keep your chin up, and enjoy each day, even the stressful ones. Life is about how you handle things. 

3. If you feel stressed, take a slow deep breath and close your eyes. Picture something that makes you smile. It  viscerally changes your mood. 

4. If my tumor was genetically based, no amount of dietary change or supplement would effect its growth (PS Astrocytoma tumor cells grow/replicate exponentially). According to this most recent scan, there has been minimal to zero growth. There may even be a change/lessening of density. Therefore, my tumor is environmentally based and can be treated, perhaps eradicated, with diet and supplement changes. 

I am so excited about this turn of events! This means that maybe, possibly even someday soon, I can help others eradicate their brain tumors. This is the most non-invasive and promising treatment I've ever heard of. It's cheap, and has little to no side effects. I'M SO EXCITED!!!

Here are two photos from this morning. We awoke to snow in Seattle - a rare occasion. Life is so beautiful!

I see a heart in the tree, and it makes me smile.
Put birds on a heart tree, and that's just pure bliss!

Emma dog & Jess 

Sniffle...I'm Jessica

Yesterday was awesome! Until I fell.

So, yesterday, I had another doctor appointment. After looking at a map, I decided that since the office was only three miles away, and my luck with buses hasn't been that great, I would run to my appointment.

Everything was going smoothly, my little MP3 player was all loaded up and plugged in my ears. I also had my new phone with a mapping system to show me the way.

Under I5 - Green Lake

As I was running I kept recognizing the beauty all around Seattle. The weather is so temperate, and gorgeous, even when it's gray. Seattle has the ability to sooth you. 

Ravenna Area?

The course taking me to the doctor was through neighborhoods that I've never seen. Such beautiful Tudor style homes, and fun, windy little streets. Quiet little places. 

Capturing My Love Affair With Moss

I was minding my business, according to the map on my phone I was less than a few blocks away, when my left leg gave out on me and I collapsed. I hit the ground with my left knee, then my left hip, and my left elbow, while my left shoulder made a crack. My right hand tried to help brace me, but it was practically an afterthought. Worst of all, my new phone that Danny had so graciously gifted me, was shattered.

My adrenalin was through the roof, and I felt completely confused, was I having a seizure?!? I stood up, and leaned against a concrete wall trying to get my vision back on track. Everything looked overexposed, and I couldn't tell if the ground was solid. It was weird. Right then, my phone rang and it was Jessaca - perfect timing. I sort of talk/sobbed and told her what happened, being a mother I think she wanted to come over and bandage me up and give me a cookie or something. Gotta love moms. I would have gladly let her baby me, I was pretty shaken up.

Fallen Soldier

Luckily, although the screen on my new phone is shattered, it still works! Phew. I knew I didn't deserve a super sweet phone, I'm too much of a klutz. I apologized over and over to Danny, but he didn't even care about the phone he was just glad I was okay. I'm still mad at myself though. Stupid feet! No that's not true, I love you feet, but seriously, did you not realize the cargo you were carrying?!?!

I waited at the doctor's office, and when the nurse brought me to the back room for my visit, I hobbled behind her. This was my first appointment with a possible new GP (one that my medical will cover). When he came into the room and said hello, I started crying like a middle schooler that just got teased in the lunch room. Awkward! His eyes got really big and he brought over a tissue and asked what was wrong. I told him, "I had been having problems figuring out the buses....baby sob....so I decided to run to my appointment...second sob...and just a few blocks back...sob again...my left leg gave out...sob...and I fell. I'm sorry....sniffle....I'm Jessica....it's nice to meet you."

Pause The X-Ray

Ugh....why is our health care so confusing?!?! Why is it that they'll pay for THAT but not THIS, and sometimes they'll cover 80% and other times nothing. On a whim, I called my insurance company to make sure that I didn't need a pre-authorization, and I asked what they would cover. Answer: I would have to pay the first $500, and then 20% after that. Yuck! Seriously? How much IS an abdominal x-ray?

There is a whole world of medical nuances and it can seriously make you go blind. I've been fortunate enough to have my mother match up all of my statements, and bills and argue discrepancies. She's saved me a lot of money because of coding errors and double billing. I think it's sad that it's this hard to figure out your own health care. We have amazing doctors, amazing treatments, and I love the health care available, it's just so damn expensive. Think of if I didn't even HAVE insurance. That thought makes me ill.

I recently was able to get on to Danny's work insurance, so now, instead of just stacking another $500 & 20% bill onto the stack, I've already been on the internet trying to find a new doctor on my new insurance plan that will hopefully be a good fit and maybe won't be quite as expensive. So far I've got nothing. Most of the general practitioners that I could walk to (closest is over a mile) specialize in physical therapy, or they have a small private office and they don't have access to the other therapies that I was hoping to utilize. This whole no driving thing is really becoming a pain in my ass.

It has been five months, exactly, since my last seizure. In one more month I can drive. I've talked about it a bunch with Danny, and a couple of my friends, that I'm scared. I don't know if I can put myself behind a wheel. I would never forgive myself if I hurt someone. Dan and I have a friend who was hit by a car while riding her bike. If I was driving, and a seizure came on, I might not be able to stop the car in time. What if I hit a pedestrian? What if I hit a child? What if? What if? It's a very sobering thought. I don't know how I will reconcile that fear. I'm not sure if I should ever drive again.

Ugh. In the meantime, I need to find a new doctor and see if Dan's plan covers x-rays. I hate this. I just want to crawl back in bed and give up.

Divalproex Is The Devil

The past few days have been tough. The family has been researching different alternative medicine, different unusual treatments that are being used in other countries. We're lead to them by other brain tumor patients who have had success. It's wonderful, and yet at the same time I feel overwhelmed.

In the meantime, we're trying to get appointments with a neuro-oncologist to deal with my anti-seizure medicine. The side effects are too extreme for me. I'm grumpy almost all of the time, depressed for no reason. I'm trying to keep a happy face, but I'm just having such a hard time functioning. There are lots of other anti-seizure medicine out there, so I'm hoping that we can find a better fit. If I can't find a good fit, I might just get off the medicine and elect to avoid driving and other activities that would be dangerous for a seizure ridden person. I feel crazy. I'm definitely not myself. My radiation oncologist already told me that anti-seizure medicine (for a person with my diagnosis) may not even change a thing to avoid an episode. With that lingering in my head, I'm not going to lose myself in medication at this cost.

One more thing. I'm sure it's nothing, but I had an atypical mole removed on my chest and the pathology came back positive. I now have to go back in for more digging to remove the areas around the mole and have it sent for even further testing. I'm feeling fine about the results, especially after having friends share some scary stories about precancerous mole episodes, it's just not fun.

Normally I could shake things off, but right now I'm just in a funk. I'm funky. My vision is blurry, I can't shake my head quickly, I'm groggy, I sleep over 15 hours a day/night, and my eyes are watering, but I'm not crying about anything. I'm not sad, I'm just emotional. I HATE PILLS. Specifically, divalproex (depakote).

Day 3: Broccoli Sprouts

Things are not looking very good on the sprout front. I'm actually afraid to take a photo to share...I'm going to suck it up though, and go take one. Cringe. Ugh. I don't know what I'm doing wrong. My mom said this was going to be, and I quote, "Sooo (very exaggerated) easy."

I'm so disappointed with my sprouts. Good grief. I'm capable of growing things outside! I swear! Here's some proof. It's not quite the garden from last year, but there's still a bunch of delicious and beautiful things in there.

Apparently, my wild bunny has hankering for the spicy stuff!

Last night, Danny and I were sitting on our patio when we heard a hummingbird swing through. Dan grabbed the camera, and took the follow photos. As you can see, the little guy wasn't exactly the hummingbird we were expecting...

Click To See A Larger Photo

See what you think. I'm on Team Moth. He's pretty when he's looking away, but jeez, that mug is a face only a mother could love.

This is what I do to distract myself from the unknown. I'm scared about the seizures. The other night I woke up at 3:30am and I had a sort of panic attack, or crazy headache, I'm not sure exactly what it was. I don't know how to explain it. Anyway, my mind was going a million miles per hour with thoughts, then everything went blank. I felt like I was about to have a seizure. It was very scary. I ran to take my pre-seizure pill and then laid on my back in bed, trying to practice my meditation breathing technique.

I don't know what else to do. I take my seizure medicine and I sleep as much as I can. I exercise regularly, I'm only running 10-11 minute miles for 30-40 minutes every other day, but I'm working toward going faster again. The only other key, that I can think of, is a healthy diet. I'm not sure what else I can do. I'm reading a book about meditation and trying to practice stress management. I honestly am at a loss. I think I seem completely normal to people, but I sleep so much, and I'm exhausted constantly. I try to put on a happy face, and usually that's a true feeling not a facade, because I don't want to focus on the scary stuff, but jeez. I feel like I'm continuing to deteriorate. Specifically since the seizures.

Thankfully, my parents noticed my difficulties and talked to Danny. We had all been feeling like we were sitting, waiting, for doctors to radiate my brain. They aren't proactive, their specialty is radiation. Anyway, now we're trying to take another avenue. My parents contacted John Hopkins University for an appointment. We're hoping that they'll review my medical records and they can help us figure out another step in my care. We want to do more preventative stuff. I don't want to waste a moment. It's better to stop the growth than to try and resect again, or radiate.

I know it's pointless to stress about my health, in fact it's detrimental, but those who are around me all the time (my mom, dad and Danny) can see changes in my capabilities. That scares me. And, it scares me that it scares them. I wish this whole tumor debacle would just evaporate, just *POOF* be gone. My parents should be hosting BBQs with friends, laughing and living their lives. Danny should be dreaming about having a life with babies, the family he has always wanted. Kaal shouldn't be worried about his little sister. The rest of my wonderful family, Danny's amazing family, my beautiful friends, everyone - people shouldn't have to worry about this stupid tumor. I don't want to cause stress, but I can see it in people's eyes, and I can see it in their tears. Sometimes the tears are happy ones, other times they come from heartbreak. I'm sorry that this tumor is growing. I honestly thought I would be an exception. As Susea likes to say, "Shoot. Some lucky dog has to win." It's tough to be in that 1%. There's a lot of competition.

Low Glucose?

It's amazing how not being able to drive will slow ones life. The past two days I have been sleeping and sleeping. Well, sleeping and bathing. I'm almost rested, and very clean. Yesterday, I took both a shower, and a hot bath. Water conservation fanatics would curse me.

Although the second seizure was a shock, I'm feeling better.

What does one do when their body starts doing weird things? Obviously...Goggle it! At least, that's what I do. It's how we found out about the brain tumor in the first place. Thank you internet!

According to the National Institutes of Health
Causes of seizures can include:

• Abnormal levels of sodium or glucose in the blood
• Brain injury (such as stroke or a head injury)
• Brain injury that occurs to the baby during labor or childbirth
• Brain problems that occur before birth (congenital brain defects)
• Brain tumor or bleeding in the brain
• Dementia, such as Alzheimer's disease
• High fever
• Illnesses that cause the brain to deteriorate
• Infections that affect the brain, such as meningitis, encephalitis, neurosyphilis, or AIDS
• Kidney or liver failure
• Phenylketonuria (PKU), which can cause seizures in infants
• Use of illegal street drugs, such as cocaine or amphetamines
• Withdrawal from alcohol after drinking a lot on most days
• Withdrawal from certain drugs, including some painkillers and sleeping pills

After trying to find the cause of my seizures, Dan, my parents and I have isolated the similarities between the episodes. There are only two bullets from above that work. Obviously I have a brain tumor, and the second cause is abnormal levels of glucose in the blood. Both days that I had seizures, I skipped breakfast (I know, I know, very stupid move but I was busy) and drank 2+ espresso shots.

My whole life I have been irregular with my morning meals. I've never had a problem skipping breakfast, or drinking lots of coffee on an empty stomach, but now, my life is changing, my health is different, and what used to work does not work any longer. I am not the iron horse I once was. Again, I need to be more gentle with my body.

At every turn, with this tumor adventure, my body is making me slow down. If I don't listen to what my body needs (like more glucose), my body makes me listen.

Note to self: Eat breakfast and keep a regular eating schedule. Maybe it's time to revise my diet a bit.