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February 2013

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No Business

Thank you for the encouragement. I am so incredibly disappointed that I had another seizure. And, I absolutely agree that my friends were just worried about me. It makes me sad though, that my friends are concerned, that they think it is a bad idea for me to join them in any situation – not that they’re wrong, but it sucks. It hurts deeply. I know that wasn’t the intention, but it was definitely a reality check. I don’t want to just sit on couches, drink tea and visit. I don’t want to be stuck in small groups. I don’t always want to play it safe all the time, I want to live my life. It is very hard to have to hold back, to not participate – even if it’s what’s best for me. “Liability” was my word, not my friend’s, but that’s how it made me feel. My friends care very deeply for me, and they addressed the issue out of pure concern, but it is pretty awful to have people think you can’t do something – or at least deeply question your ability. Not everyone is going to be invited to everything, we’re not all going to get participation medals. Life slapped me in the face on this one, though. It was a direct comparison to what I used to be able to do, and what now I can do no longer. It makes me feel weak. It makes me feel like I’m slipping away. None of this was the intention of my buddies, but this cancer is a wicked, evil thing that knows no boundaries. I don’t blame them for their concern, in fact I LOVE them for it, they only want what is best for me. Both sides are complicated. Ultimately, I don’t have any…

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Another Seizure

Last night, around 11:00 pm, Danny gently woke me up. Apparently he noticed my body jerking, my arms stiff along my body. My fists were clenched and my mouth was foaming. I don’t remember any of it, but after i woke I was completely confused and my head felt like it was exploding. Danny is going to email Dr Liau to keep her informed. Hopefully she will also finally give us the results from January’s MRI. The delay is because UW didn’t send the MRI disk to LA until weeks after the scan. I have been constantly checking in with them, and UCLA. It has been frustrating, and I’m so grateful that I have a low stage tumor, a glioblastoma fighter would not be able to be so liberal with their time. After discussing possible causes of the seizure, Dan and I came up with a myriad of reasons… 1. I’m stressed because I still have not gotten the results from my January MRI. 2. My body is still recovering from the brain surgery. 3. In just over a month I have flown to Germany and New York. Jet-lag is very hard on your body, especially when dealing with an illness. 4. Danny is working 12 hour days, 6 days a week. Our schedules are all messed up. 5. Girlfriends of mine are hosting an annual trail run, then they do a huge pub crawl. I had been planning on joining them, but they decided (after talking privately) that they didn’t think I should come. I was only planning on going for the run, then visit for an hour or two, then my dad would come pick me up. I know I can’t do it all, but I still want to see my friends. Hearing that my friends didn’t think…

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Capable

There are a lot of vices that I could choose when I feel sad about my diagnosis, about my limitations. And at times in my life, in other situations, I have made destructive decisions – and still do, I guess, in very minor ways (a candy, or “extra” wine). I can not do everything I used to do. Yes, that makes me sad. There is no way around that disappointment. But, what I can do is find my strengths. When I am feeling less than, or inferior, to my old self, I am the only one who can fix it. Wine, sweets, sourdough bread, prettier hair, less wrinkles, nothing is going to make me feel better than feeling CAPABLE. I just ran 7.6 miles at an 8.9 minute mile I can’t do everything, but I am still strong. I am still evolving, healing, and persevering. I am happy to be moving forward. And, ultimately, that’s really all I can ask for 🙂

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2008 vs 2012

I got stuck looking at old photos yesterday. It is bitter sweet looking at pre diagnosis Jess. I remember being so hard on myself. I was never satisfied with my appearance. I constantly listened to that mean little voice in my head – you know the one – the one that says things like, “Hey saddlebags, you look like a heifer in these jeans. No seriously. Your muffin top is massive. I feel sick looking at you. You’re making me want to vomit.” That little voice is a total ass! I’m still hard on myself, yet, oddly, I’m at a lower starting point than before. Now, I wish I had what I used to disregard. What I used to abuse and disrespect. That’s a tough pill to swallow. After surviving the brain surgeries, the heavy medications, the rehab, I think I have a slightly better perspective, and can focus on more important issues other than looks. It’s not the end-all, the number one judgement, of how I value myself. The definition of health, for me, has directly changed because of this brain tumor. No more diet cokes, no more artificial sweeteners, no five hour energy drinks, no more diet pills, no diet tricks, no diet shortcuts, no starving myself to lose a pound, no more occasional cigarettes (an old college trick which I have not indulged in for several years). I may not be pretty in the way I prefer, but I’m prettier on the inside and that’s something. Here is one of the photos that I found yesterday. The girl in that photo is gone. Now, I look more like the woman in the second photo. I really hate to look in the mirror. I barely ever take self portraits – or if I do, I cringe. I wish…

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Training

I just finished my longest run thus far, 6.2 miles. I felt like I was jogging at a nice easy pace, then when I checked my timer at the end it turned out my pace was 8.7 an minute mile. Sweet! I’m not trying to run fast, I just want to keep a nice and steady pace. My only goal is to jog as much as my body feels fit. If I need to walk, I will, but there’s a difference between having my body be tired or hitting a mental wall. I figure as long as I can talk with Emma as we jog, or I can sing under my breath, I’m at a good pace. To be honest, I thought I was running at a 10 minute mile. Obviously, I was incredibly surprised. Very happily surprised 🙂 Emma loves my running. We make a great pair 🙂 Kisses for meeee

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Soliciting Laughter

Sorry for the meltdown the other day. I’m better 🙂 Yesterday afternoon Dan and I got a nice five mile jog in. Running always makes me feel better. There’s something about being outside, about feeling the burn in my quads, of the splats of Seattle mud on the back of my calves, that makes me feel accomplished, and connected. It makes me happy, and feel deeply alive. Today is the five month anniversary of my brain surgery. Can you believe how quickly time has flown by? I can’t. Even with the occasional threat of a seizure, I feel like I’m persevering – and thriving. I have bouts of frustration (to be expected), but just as quickly as they come – they go. It’s so hard to not freak out, to not over analyze things – diet, toxins, chemicals, etc. At times, it seems like everything is out there to kill me. But that’s no way to live! It’s too stressful. Instead of constantly researching things to avoid, I’m going to take some time to only check out novels from the library. I’m banning non-fiction for a bit 🙂 As soon as I’m back running, I get things back in perspective. I am incredibly healthy, and very, very fortunate to be constantly progressing and healing. Just months ago I was under anesthesia. My brain was being explored – “cleaned” – if you will. My right hand and foot are still numb, but it’s much better. I’m not sure if the sensation is coming back so much or if I’m just getting pretty awesome at compensating 🙂 …see…I’m feeling MUCH better. Either way, I don’t care that much about the details, I’m just glad that I can put my earrings in, and clasp my bra. These are a few of the things…

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Oops

I napped most of yesterday, trying to get back on my feet. I thought that resting for a day and getting a good night’s sleep would be enough. So, this morning Dan and I went out for our 6 mile run. Half a mile into it I started to get dizzy, and nauseous. My body is so off. I can’t even explain it. If you remember, when I had my first seizure, the grand mal, I was driving alone on a highway, cruising at about 60 miles per hour, weaving along a ledge above the Wenatchee river west of Leavenworth. I had a weird sensation, a minute change in vision, like everything was slightly over exposed. I became nauseous, and dizzy, and although I had no way to know what was about to happen, I pulled over. As I put the car into park my body began convulsing, my eyes rolled up and the last thing I saw was the ceiling. I have no idea how I knew to pull over. None of the things were so severe that I was scared, it was just an odd feeling, an indescribable sensation. From time to time I get these premonitions and they’re scary. I never want to freak out, and it’s important that I know how to keep myself safe. So far I have been able to avoid any other grand mal seizures, but they still have a hold on my life. I still have to be really careful. When my body alerts me, I take it very seriously. I never want to have another seizure ever again, if that’s possible. Flash back to this morning, Dan ran into Dukes at Greenlake to get me ice water. I chugged it (ice water is what it takes to immediately calm my over…

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Home

I’m home, and exhausted. Yesterday, we had to check out at 1:00pm and our car to the airport was at 4:00pm. My body was exhausted, and I thought that taking a walk, drinking a fresh pressed green juice, then visiting at a Starbucks with Christel to pass time would be a great way to kill time. Unfortunately mid conversation, I felt a massive wave of nausea and experienced vertigo. It was the feeling of an aura. I ripped off my scarf and ran for the door, needing cool fresh air. Christel immediately ran and got ice water which I chugged and placed a lorazepam under my tongue. I didn’t know what to do. New York is amazing, but there’s not a place on the entire island of Manhattan where you’re alone, and it’s quiet. Christel and I slowly walked the half block back to the hotel where I laid down in the lobby of the hotel, put my noise canceling headphones on, and closed my eyes. Christel ran around getting things to help, she kept refilling my ice water (at least two liters), she grabbed some food, that I couldn’t eat. I was just trying to limit the stimulation. My brain was frazzled, frying. We almost cancelled the flight and just stayed one more night, but I wanted to get home. I was going in and out of nausea and sickness, along with confusion, and I didn’t want to push it, but I needed to get home and climb into my safe place, my cocoon. Ultimately, Christel contacted Delta and when we arrived at JFK we had a wheelchair waiting. I closed my eyes and just tried to avoid all of the chaos of the airport. Once on the flight we hunkered in, covering me with blankets and christel’s puffy…

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NYC – 2nd Shot

Christel and I are relaxing in our spacious, upgraded, room. (How does this keep happening to me?) We even had my friends from NYC send a town car to pick us up at the airport. Thank you Steph & John!! We are enjoying ourselves, lounging on our beds, pooped from laughing (no pun intended) after we barely survived the flight. We were pinned between a man in the seat in front of us with MAJOR flatulence, and the bathrooms which were directly behind us. I’m so glad THAT’S over 🙂 Time to relax. I’m so excited for my shot tomorrow!! Woo hooooo

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