Wednesday, February 27, 2013

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 business engaging in a pub crawl. I want to engage, though, to be included and have the option.

Either way, it certainly isn't the end of the world. Wires get crossed, intentions become misconstrued. This was a great lesson for me, to just allow some of the party to pass me by. They are great friends, and are always willing to meet up for more subtle, intimate get-togethers. I just need to focus on those, and put my expectations lower. I don't need to party, party, party. I have to do what's best for me, and I think that was what my girl friends were trying to do.

Tuesday, February 26, 2013

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 it was a good idea for me to join them was incredibly painful. The truth, in their minds, is that I am a liability. What people don't know, is that 90% of the time I pass on invites to get out and socialize for just that reason. By my girlfriends basically disinviting me, it conjured up deep rooted feelings of insecurity. I always worry that something might happen, that I might become too tired in a given situation, or that heaven forbid I have a seizure. I understand that my limitations cause me to not be the best candidate for social situations. I don't blame them though, for how they feel. That's the hardest part with your closest friends, you wish that they would want you around no matter what. That they would love to spend time with you, that they don't only want to be with you when it's convenient. My life isn't convenient. My life is unpredictable. And I never know how long my body will hold up. I should expect my friends to want me in all situations. I'm a lot of work. But it hurts. It just sucks.

I'm exhausted. It's time for a nap. My life continues to change - drastically in the past 24 hours. All I have is this present moment, and I have no idea what will become of me.

Ultimately, one could say they were right to disinvite me, judging by last night's events, but does that mean I'm supposed to just stay at home for the rest of my life? Or remain on couches. Play it safe and miss out on fun social situations? I don't have the answer, but I do know that I'm not interested in fighting to be with my friends if they don't have faith that I can conquer things. My dad offered to ride his bike as I jogged for the trail run, but it's not fun to try and include yourself when people are on the fence.

Friday, February 22, 2013


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 :)

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 I wouldn't have been so hard on myself. (As I write this I feel like history is repeating itself...perhaps I need to be more gentle about my appearance. There is a chance I may look back at this point in my life and wish that I even looked that good. It depends on if the cancer continues to progress.) From the time I was little, my grandma would tell me, "I used to think I was fat. Now I wish I had that body." I'm learning some hard lessons early. It's good for me though. 

November 2008
October 2012
Although the photo on the beach was relatively recent, I know that it's not exactly what I look like now. But when I look in the mirror, THIS is the image that I see, and it's very sad to me. I've gone through some very painful experiences, and sometimes I wish I could just flash back to ignorant, fun loving, vivacious 2008 Jessica. I've seen too much though, done too much, to feel carefree. I doubt I will ever be able to feel that way again.

There's only one thing I can involves Emma, running shoes, my raincoat and my TCU alumni hat. It's time to brave the wind gusts and sheet rain. At least I have that. And that IS something.

Wednesday, February 20, 2013


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

Monday, February 18, 2013

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 that bring me great joy.

On another note, a very VERY sincere thank you for all of the donations to my medical account! We have paid for the clinic in Germany AND the shot in New York. Thank you for the help! I am so incredibly grateful, I can't even express my gratitude. I wish I could give each of you hugs. Just imagine you're getting a hug, please :)

Also, if you haven't heard, there is a man who has been attacking women around Green Lake. Please be careful! The article I read said the attack was along Wallingford Ave N and E Green Lake Dr. A man came out of the bushes and jumped on the woman. She screamed and a male bicyclist chased the attacker away. It happened around 6:30 a.m. Maybe don't run alone? Or avoid running in the dark? Perhaps take mace? Just wanted to throw that out there.

Back to the anniversary, cheers to another five months! In honor of today, please either tickle someone or hide behind a corner and surprise someone (preferably someone you know). Today is all about soliciting laughter :)

Saturday, February 16, 2013


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 active brain - along with lorazepam), we sat for awhile, then walked home to rest.

I hate it that my body isn't as capable as others. I hate that I have limitations. I hate it that this makes me cry. I hate that my brain is working so hard, yet short circuits so easily. I hate it that I can't power through life with a coffee and tenacity. I feel so frustrated and sad. I'm lucky to be here. I'm so grateful to be alive. And I MEAN that. Deeply. But I'm also frustrated.

I probably won't be emailing or texting for a bit. I need to just gather my wits.

And mom and dad, please don't panic. I'm just venting. Seriously. And I need rest. I love you all.

And thank you Christel. You are amazing. And I am so grateful to you.

Friday, February 15, 2013


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 jacket. There were a couple of touch and go moments, but I just popped another lorazepam, closed my eyes, and mentally sang a lullaby. I know it's cheesy, but the lullaby hopped into my head, and it calmed me down. It removed all the thoughts swirling in my mind, quieted my fears, and completely distracted me. It was exactly what I needed.

I have stress induced seizures. That's why quiet is so important. I always need a safe place to go, where it's dark, quiet and cool because I just never know when my mind will short circuit. If I catch it in time it won't turn into a seizure, but it's very important that listen to my body.

Next time I have to checkout at 1:00 pm (they wouldn't let us remain in our room), I will just pay for another half day. When traveling, I need to spend a lot of time in bed. I need to avoid stimulus, especially just before a long cross continental flight. I'm still learning my boundaries.

As for the shot, it was no big deal. I did not get sick. It was wonderful seeing Dr Germany again, and of course Dr NYC. It was kind of embarrassing because when I walked into the office, Dr NYC said, "The girls in the office found your blog (with a grin) thank you for all the kind words!" I immediately turned bright red. I never really remember what I write, I just put down my experiences and feelings.

So the piece of bad news that I am very sad to report is that the treatments in NYC have doubled due to our government imposing insane taxes. Because I went to Dr NYC last fall, I qualify as an existing client, however for those who met with him after January 1, 2013, the prices are dramatically increased. I'm so sorry to those who are watching my case, and deciding from my results. I don't understand why our government would cause the current cost of the shot ($4,200 Euro) to DOUBLE ($8,400 Euro) because of an imposed tax. Obviously the government doesn't find the shots to be dangerous or they would ban them. Instead, it implies that only the wealthy should get access to the best immunotherapy in the United States. It's disgusting, and frustrating. And it makes me feel so helpless. It makes me so disappointed in my country.

I am able to get my shots in the United States under "Compassionate Care." An attorney drafted the legal documents and that costed $500. Now, the documents, drafting, and legal right to undergo the shot therapy in the US is $5000. This is insane! Why does our government want us to die?

Ok. Time to rest. It has been a long week.

I love you all.

Thursday, February 14, 2013

Happy Valentine's Day...

...from NYC :)

Will post about the trip soon.

Tuesday, February 12, 2013

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

Thursday, February 7, 2013

We're Giants!


I have been eating like a horse lately. I can't seem to feel satiated. I'm hoping it's because I've jump started running again. (Previously, I had only been running twice a week - now it's four.) Hopefully my crazy cravings and absurd hunger will level out. :)

I am having so much fun training! It forces me out of the house for a run, even if it's dumping rain. Each day that I cross off my running calendar makes me feel so accomplished. I end up feeling invigorated. Thrilled. Ready to conquer the next hurdle. And tired, and sore, but in a good way! I haven't ran a half marathon since before I was diagnosed.

My first half marathon was in 2007, and I started training because I was quite overweight. Seriously. My fattest point (and I say "fat" because the extra weight was pure lard) was 182. I'm not even joking. I'm 5'6 3/4. I haven't had a weight problem since that point in my life, I've fluctuated, sure, but I will never get to that point again. After all of the surgeries I've always gained between 5-7 lbs, but although I keep tabs, I don't go crazy to keep a certain weight. I weigh myself every week or so, just to stay informed. I have the kind of body that disperses weight pretty evenly, so I can gain 10 or more lbs and still be in the same jean size. My clothes keep secrets quite well, so well that they don't even keep ME informed. Therefore, I am one of the scale lovers. Some people hate scales, and that's fine too, I figure we all have to find our own tricks.

Anyway, this half-marathon training is such a powerfully emotional and inspirational venture. It signifies that I'm capable, that I am strong. That I am in control of my body, and my mind. That I can stick to a schedule. That I'm one step closer to living a real life, closer to proving that I can hold a job, and most of all, that I am healthy.

Each time I look at my muddy running shoes and see the wear, or feel the ache in my muscles I feel proud. It's quite possibly one of the best feelings in the world.

Best breakfast in ages, oatmeal, ground flaxseed, frozen handpicked FH blackberries from my brother

Monday, February 4, 2013

San Juan Island Marathon

I have exciting news...I just finished talking to Dan and after getting the green light, I have decided to train and attend the Kings Market San Juan Island half marathon on Sunday June 16th. I'm so excited!!!

I am so incredibly thrilled to have a new goal. I can't wait to match my longest run, only this time it will be 8 months after a brain surgery. Depending on the schedule of shots, I may have to get a shot in the days before or just after the race, I won't know for sure until May. Either way, if I'm tired, I figure I will walk if I don't feel well :)

I've already worked out the training schedule and I will be able to train during the day, during the week. This is going to be so fun!! I'm shifting the schedule so that my runs start on Monday and my long run is on Friday.

If anyone is interested in joining, I always love to see smiling faces. This is going to be a great accomplishment. And I can't wait to have it happen in my home town :)

I have this planned so that I can run in the morning then nap in the afternoon. I don't want to jinx myself, but it seems to be the perfect plan! Woooo hoooo!

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