Friday, August 31, 2012


Ok. Mom & I are flying to New York for a doctor appointment on Tuesday. It'll be a quick trip, just two days, then back home and I'm really excited! This is an exploratory appointment, and if it goes well, I might be going back on multiple occasions. This is exactly why my parents did the cherry fundraiser, so that I can go to the best doctors and get the most up-to-date treatment information. The doctor, Dr NYC, is all over the cancer community, pushing the boundaries of treatments. He's a genius who is deeply respected in the cancer world (he also specializes in fertility for those who might be interested), and is on the cutting edge of cancer research. Not to mention the fact that he "currently directs the world's largest database project on anti-cancer herbs," according to the clinic website. According to my research, and my girlfriend who is a patient, he is incredibly open minded about alternative treatments, and at the same time he has the western medicine knowledge and experience so that he combines the best of both worlds. This is so great!!

I have wanted to fly to New York to meet this man, and learn from him, but I haven't had a great sense of direction. It's always tough to make the final decisions in life, but luckily for me, this morning I received a sign! My girlfriend who is battling metastatic breast cancer mentioned Dr NYC, and I remembered us discussing how pleased she has been under his care. She was literally singing his praises when she found out I was curious about his reputation. This girl, or woman I should say, although I usually just call myself a girl - we're the same age (more or less), is one of the most well researched cancer patients, or humans for that matter! She's incredibly interesting and witty, curious, and out-of-the-box in her myriad of cancer therapies, most of which she has researched and discovered on her own (it seems). She's hands-on, and although we are an ocean apart, I feel like we're going into battle, side by side, with full armor. Hopefully L won't mind that I'm sharing our friendship, but it's important for me to include the catalyst for my new appointment.

Sometimes when I'm not blogging, actually quite often, I'm researching. This astro-hermie is never off my mind, or out of my mind for that matter :) I'm constantly planning my next plan of attack, and I've got a pretty sweet one figured out! The problem is that I can't explain it until I have all of the information from my multitude of doctors (it will take several conversations since there are so many). So, for now, please trust that I have quite the bunny up my sleeve. Things are looking better and better, and as I am able to give more information, I promise I will let you know. It could take months for me to be able to discuss, but like the youngest child that I am, I am HORRIBLE about secrets - especially my own.

I guess the biggest take-away from this post is that we are on a serious upswing, and I have a master plan. The best and most elaborate plan I've had since I was diagnosed. Fingers crossed that it will all work out!

Last night Dan and I took our nephew Casey to the preseason Seahawks game.

Holding hands as we walked through the crowd. Highlight of my night :)

I'm headed to New York!! More on that to come.....

Wednesday, August 29, 2012

My Fitness Pal


From being so sedentary the past month and a half, I've gained a few pounds. It falls somewhere between the seven to ten pound mark of pure lard. No big deal though, I found the coolest FREE app, MyFitnessPal, that counts my calories, even showing the breakdown of carbs, protein & fat, and calculates the calories that I burn. It even shows the breakdown of the vitamins and nutrients that I've eaten that day. I can check any deficiencies - it's so cool! The whole thing has turned into a game. I sound like an advertisement, but I promise you it's amazing! I use it on my phone and it's fun to add in any new food, or exercise. I thought it would be depressing, tracking every single piece of food that goes in my mouth, but instead it has been uplifting. If I eat a big meal and I feel fat, I can check my app and so far it has shown that I'm still within my range, or I realize that I need to get out for a quick walk or jog. Instead of figuring that I've already ruined my calorie count, and going for more food later, I realize that I am still in the game. I'm not sure if that makes sense, hopefully it does. I've already lost 5 lbs. I even ate homemade margarita pizza last night, and STILL lost weight.

If I keep up with my program (my goal is to lose 10 lbs), I should be at my goal weight 145 by Oct 1st. That's exciting!! At the rate I'm going, I only have 5 pounds more to go. I've always had a problem eating small amounts, especially when the food is delicious, but it was fun creating a healthy-ish meal like my homemade pizza, and still losing weight. I can literally track everything, and I know exactly how to be successful. The best part is that I can see when I've gone "negative" and I need to get out to burn some calories to stay on track. No more guessing. No more giving up. I'm probably annoyingly excited, but hey, weight is tricky and anything that helps keep me healthy is a good thing. Let me know if anyone decides to create a program - you can visit with your friends and share info. Some people like to do things on their own, but I'm more of a group kinda girl.

It feels so good to be successful. One of the worst feelings in the world is when you feel fat. It's demoralizing.

If you don't have an IPhone you can do this program on your computer at

On another note, I successfully lifted weights at the gym last night with Dan. It was the first time in two months - the first time since the attack. I am on a roll! :)

Tuesday, August 28, 2012

New Drink

This drink is so good that Danny actually craves it. That says a lot.

1 banana
2 large handfuls of spinach
2 large kale leaves (deveined)
7 sprigs of mint (deveined)
1 cup L&A pineapple and coconut juice
1/2 cup of cold water
*add ice to thicken if you'd like

The drink is 352 calories
(the entire blender) and it can serve two, or a starving person, or save it in the fridge and blend it again when you're ready to serve.

You can't even taste the greens, it's amazing! It's important, if you can't get L&A you can pick any pure fruit juice - no sweeteners of any kind, natural or not.

Enjoy!! :)

Monday, August 27, 2012

First Solo Run

I just finished my first jog around green lake! Four miles round trip. Score! Now I don't have to be afraid of having a seizure while I go out. I just needed to set a precedence. Of course, now I don't have the excuse of not exercising :) It took a month and a half to get back to running alone, but who cares, I'm back!! That loop was a huge success, and I made it through by thinking of all of you supporting me. Then, through the dusk, my face tickled by mosquitos, I sprinted out the final half mile in Ethan's honor. It was powerful.

Creating Ripples

“Remember there's no such thing as a small act of kindness. Every act creates a ripple with no logical end.” -Scott Adams

I'm feeling much better. It happened just after I hit, "Post" last Friday. Somehow, I don't completely understand it and I should never forget, blogging purges me of my pent up emotions. Yes, death is scary, but I don't normally dwell on mine. It's too morbid, too dreary, too negative, and counterproductive to my happiness (or anyone's really). All I want in life is to enjoy the good things, to fill my soul with happiness. And on that note, I'm going to take Emma on a walk in the sunshine. 

Hopefully I don't sound flippant, but if that's the case, I guess that's just how things go sometimes. The emotions ebb and flow.

Friday, August 24, 2012

Between A Hard Place & A Hard Place

Hi Friends. I am sorry that I haven't written in a bit. I've been depressed. I've been trying to get my butt in gear here and there, but for the most part I haven't had the energy to do much. I've been pretty shaken up by Ethan's death, then Kathi Goertzen's death which was technically due to pneumonia but was truly a complication from her brain tumor. A few days after that I heard that Tony Scott the famous director killed himself allegedly because he was diagnosed with inoperable brain cancer. When I heard that he jumped to his death I thought to myself, "Does he know something I don't know? How bad will this get? Will I regret this journey?" The concept of death has been swirling around me. It's in the air in each room slowly suffocating me. Each time it nudges me, I turn my head and try to ignore what it whispers in my ear, but just trying to ignore Death's comments have zapped me of all energy.

The worst part about the whole thing is that I'm incredibly healthy (other than Hermie obviously). I have EVERYTHING going for me. I have a fabulous life with a wonderful man whom I adore. I have a safe home. I have wonderful friends and a great family. I get it. Conceptually, I understand my great fortune. But, sometimes, I get torn between fear of the monster in my brain, about the projected future of my disease and denial. I can't seem to live in just one life (fear) or the other (denial). Instead I oscillate, fighting, fulling knowing that I if I don't accept the truth of my situation (whatever that means) I'll crumble. And that makes me frustrated. Life is too short to fall apart, and I hate that I'm in this predicament - not the tumor part, but the fact that I can't seem to come to peace with it these days. There's no point in being upset that I have brain cancer, I can't wish it away - but I can try and heal myself with healthy eating, exercise, supplements, and perhaps the clinical trial. But when I'm depressed, I don't feel like taking my pills. I don't feel like leaving the house. I don't feel like dealing with anything. I don't want to talk, or write, or socialize. And that's not me. I hate it when I'm not me. But I don't know how to fix it. People have mentioned anti-depressants, and I appreciate the suggestion, but anti-depressants have been linked to gliomas (they're not sure if it's correlation or causation) and that terrifies me. I feel anti-depressants aren't an option.

Ferry ride to FH

Monday, August 13, 2012

Share The Love

Just this afternoon, I found out that a high school friend passed away over the weekend. A week ago, Ethan sent me a message letting me know that he read the blog from time to time and that he felt inspired by what I write, and what I'm going through. I was shocked by the message, and incredibly moved. I have felt so vulnerable, and to get his love and support helped empower me. Please remember that in just a few sentences, a few words, a little message or note, you can completely change someone's future. I'm not saying this for my sake. I'm not asking for people to send me messages. I'm sharing this story with you so that Ethan's love can be spread to others. Please take a moment to remember how quickly life can change. Please decide to say the things that you've been meaning to say. A small kindness, that takes only a few moments, can ultimately change the direction of another person's life. Words are powerful.

Wes & Ethan Edholm

I learned that we lost Ethan this afternoon, and this evening I learned that we lost Kathi Goertzen, the local anchor woman. She had been battling brain tumors for the past 14 years. Today is a crisp reminder to cherish each moment, each friend, each love, each family member, the cool breeze, the scent of summer air, each bumblebee and gorgeous green leaf. Please take a moment to read this, then close your eyes and take a deep a breath - slowly inhaling as much as you can. Savor the smells around you, they might be sweet, of fresh air, or the pungent scent of a stagnant dinner. Either way, you're alive; remember that you're lucky. Don't miss the opportunity to relish each moment, life goes by so quickly. Instead of having regrets, share the love in your heart. You will be glad that you did.

Sunday, August 12, 2012

On The Up & Up

Things are getting better, I just have to get out of my head. I'm not sure if that makes sense. The seizure issue, for me personally, is a mind game. I can easily work myself up into a very fearful state, or I can calmly remind myself that I'm doing fine, that I'm just overheated, maybe it's very sunny, that my heart rate is up because of the conditions, not because I'm about to have a seizure.

I'm getting to the point where I feel "normal" and much more strong physically, and mentally. I still have fear, but Dan and I have been working on pushing my limits. I went for a walk with my friend Lauren the other day, Dan and I made it to PCC and Home Depot (both driving), and Dan and I have even gone running a couple of times. It might sound silly, but each time I'm out of the house is a major success. I'm excited to try and get out of the house on my own. I bet the first time I do anything will be a run around the neighborhood. So far, running has been my rock. It removes anxiety, gives me strength physically, and emotionally. It puts me back to my roots, grounds me, and empowers me. The florescent lights of the real world, the sirens and traffic, all give me (and probably a lot of people) anxiety, but when I'm out breathing fresh air, eying the various plants, birds, random pets, and vibrant people out there, I always end up smiling and feeling human, alive, happy, and grateful. I should clarify, normally, when I don't have seizure activity I am absolutely fine with sounds, bright lights, hectic situations or life in general, but when I'm on overload I have to be really careful.

Thank you for your patience as I've been horrible about emailing people back, and posting on the blog. I've definitely had a lot on my mind, not just with the attack, the landlords, and seizure stuff, I'm also incredibly nervous about the future brain surgery. The first brain surgery was not an option so I felt like I could just accept my fate, and release all (or most) of my fear. This time, this brain surgery, is optional. That is intense! What if something goes horribly wrong? It would be my fault for subjecting myself. Dan emailed Dr. Liau to see if she would prefer that I get on anti-seizure medicine for the surgery. I hated taking it last year, but if it will eliminate a complication, I will do it. I will do anything in my power to eliminate all complications. I want to get in tip-top shape, create a cancer fighting, surgery healing machine. My goal is to be running 3-4 days a week, weight lifting 2-3 days a week, and doing yoga 2-3 times a week for at least a month before surgery. It might sound excessive, but I'm not as intense in the workouts as you might imagine :) It's mostly a stress reliever, and the more you work out the more fun food you can eat :)

I've added delicious food to our diet, lots of legumes, whole grains and of course the usual veggies and lean meats. The difference, is that I'm playing around with new recipes. Tomorrow night I'm making a spinach burrito. It includes sauteed spinach, onion, and bell pepper then of course, a mix between black and pinto beans (seasoned with hot sauce), then long grain black rice (seasoned with cumin & a little turmeric), with chopped green onions, chopped romaine lettuce, and shredded sheep cheese - you wrap it all up in a whole grain tortilla and it's DELICIOUS. And it's much more fun than the typical salad and steamed/grilled veggies that I usually make us. With all of the stress in our lives right now, I'm enjoying the relaxation of food rules. Life, literally, is too short to get crazy about maximizing the nutrient content. Keeping everything in the whole foods, or whole ingredient, category is good enough for me these days. So what if a whole grain tortilla is technically processed. I'm over it. It's still whole grain (of course, you still have to read the ingredients to make sure there's nothing funky), sprouted spelt tortillas are my fav. Some may disagree, but I do believe that there are some processed foods that aren't that bad for you.

Photo of the day taken last Friday...I have a new buddy, and I keep feeding him which is strengthening our bond....

Tuesday, August 7, 2012

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

Thursday, August 2, 2012

New Neighbor

My new neighbor! See if you can find him. I thought it was someone's lost exotic bird chirping outside our window this morning, but when I glanced off the balcony I saw the culprit. An adorable little fellow who was probably looking for a furry tail to chase. I'm going to drive Danny crazy, but I think I'll need to add a couple of new feeders to our mix :) Life's not just about the birds anymore.

We're pooped - Danny much more than me. He has been working the swing shift this week. Since we've been dealing with our old landlords, packing, moving, counseling appointments, and of course switching our address & utilities with various companies (all the medical, etc.). Danny got five hours of sleep today, the day before was 2.5 hours, and the day before that it was 1.5. I think he might be more stubborn than me! I keep trying to force him into naps, but he's a big guy. I can't even tackle him, he just keeps walking, laughing all the while. Luckily, he's sleeping right now, and hopefully when he wakes up for work he'll be rested. I feel guilty though, I head to sleep while he's headed to work. I can't sleep well, I worry like my mother (sorry mom) that he might get hurt, perhaps get too sleepy to safely drive home. Soon things will settle down, and I'm excited for that point. We both yearn for a regular schedule, with great sleep, healthy home cooked food (it took awhile for us to find silverware and other necessities), weight training, runs around the lake, and most of all a cozy, stable home where we feel safe. We're getting there, little by little, and it's a great feeling! Life goes in waves, and lately we've been in the base of the trough. Now, we're headed up and things are looking bright, it's a fabulous feeling!!

On another note....THANK YOU!!!! To my Auntie Lynn, my mom & dad, Dan's brother Eric, and our family friend Larkin's buddy Justin. You all helped us move so quickly, keeping things seamless and on track. I can't imagine how horrible the move would have been without your help. THANK YOU, from the bottom of our hearts!
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