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....

Success!

Team E&J conquered two laps around Green Lake without walking. Woop woop!! Hermie still didn't listen very well, he's very obstinate, but I don't like whiners so he might just push all the wrong buttons and regret it.

Goin' for "Stable"

In the picture below, you'll notice more of Larry's fresh garlic. It's delicious, but my breath is ATROCIOUS. Luckily it's just Emma and I today, and bad breath is her favorite.

This morning, I woke up rested. I had the chance to debrief with Meghan over the phone last night. We laughed, and I cried a little bit, told her my fears, and if I heard correctly, I think she might have dropped a tear or two as well.

All in all, I feel like this is going to work; the low doses make me feel so good. Also, this protocol is great - absolutely doable. I enjoy having my last meal at 4:30 pm, then cleansing my body with only water until pill time at 8:30 pm. It takes a serious amount of discipline, but I enjoy the challenge. Oddly, it makes me feel strong. I like routine, things that I can count on. I like knowing that antioxidants are for breakfast and lunch, that every day is the same. There's no guessing, no worries, just the basics, every single day.

I'm scared to see growth, albeit minimal. I worry that somehow I won't beat this. I fear that I will continuously decline, and that this tumor will invade and take over my brain until I am no longer functioning. Those are my fears. And, if I look at the majority of cases, it's exactly what happens. BUT, I have stopped Herman's growth before, so I know that I can do this. I know that it can happen. AND, we did shrink the other areas of tumor. SO, who knows. We just have to stop Herman's growth. I'm happy - not thrilled, like I probably should be - that the other areas are smaller, but as long as Herman is growing, he's a major threat and that rains on my parade.

Herman needs to be taken seriously; he's a formidable adversary. So, here we go again, another three month period to conquer this challenge. Herman feels angry, like I've been trying to keep him down, and he's pissed. I just have to keep the low doses of artemisinin coming each night, tucking little Hermie to bed with my own version of a bedtime story.

It's weird to live like this. To be a functioning young-ish adult living with cancer. My life would not be as easy if I would have followed standard of care and done radiation, so I can be grateful for that. I can't imagine all the effects I would be dealing with. Yuck. At the doctor appointment, my mom asked when they would stop pushing for radiation, and the response was: I need to get two more MRIs with minimal growth to be considered "stable." At that point, hypothetically, I would have an entire year of minimal growth which would put the radiation discussion off the table. They would continue to monitor but not push for radiation. So there you go, that's our next goal. We not only want to stop growth, and have it shrink, we want the doctors to stop pushing radiation.

But, I'm getting ahead of myself. For now, I just need to go run green lake. My goal today is to jog two laps at once (without stopping), that adds up to be approximately 6 miles. I have never accomplished that feat before, but I need to challenge myself. Hermie and I need to have a run and a long talk. It's going to be wet, but I think Herms has pretty good hearing and can decipher my words through the wind and rain drops. He's already getting pouty. He knows he's in trouble.

Pure Exhaustion

Good morning...eer, afternoon. I just woke up from my second nap of the day. I feel like I'm sleeping my life away. I'm just so exhausted all the time. Somehow, I feel like I've been sleeping for the past two weeks. Yesterday, Dan and I forced ourselves to jog Green Lake, then I went in for a shower and a nap. I'm recovering nicely from the over dosing of artemisinin, my only complaint is the lack of energy. Hopefully there's a nice cleanup crew working overtime on my brain cancer cells. Sometimes I picture a bunch of little teeny tiny happy, yet serious, bubbles with little scrubbing brushes rubbing each cancer cell until they're so shiny that they pop and two other little cleaning fellas sweep the rubbish into dust pans.

Man. I'm so sleepy. You'd think that after sleeping 10 hours last night, then a three hour nap this morning, and then a four and a half hour nap this afternoon, I'd be revving to go. No such luck. I'm going to pull my running pants up over my feet, toss a shirt over my head, grab Dan and jog Green Lake again. It's the only thing that makes me feel alive these days. That, and when Danny makes me laugh. I'm grateful for him. He always makes me feel happy.

Here's a random picture of my favorite tree around Green Lake. It lives on Winona, on the way to PCC. It's beautiful, and I'm pretty sure that I'm not the only one who's in love with it.

Hot Dogs For Seagulls?

Man. I did not sleep well. I feel like I was in a car accident. No rest for the weary though, I had errands to run today! Finally, after living in Green Lake for the past few months, I found the perfect place to volunteer. It's an independent living facility (they also do assisted living, and full time care) right on the lake. I had my tour today, which was great, and they pricked me for a tuberculosis test which was no big deal. I should hear back from the coordinator by Sunday to figure out the exact time next week when I'll start. I'm so excited!! It's not a major commitment, just about an hour and a half a week, and I think it's going to be such a wonderful addition to my life. 

When I filled out the application they wanted to know if I had any talents, hobbies or interests. Tough one. I wrote, "Talking :) (yes, I literally drew a smiley face), listening, reading, abstract painting, and walking." Thinking back, I'm surprised by the lack of hobbies. I guess I could have added blogging, writing, running, and cooking, but those just didn't pop up in my mind. No big deal though, Donna, the coordinator and I talked and I told her I'd happily do anything - just put me to work! 

On the walk home from the living community, I encountered this fine gentleman feeding the birds. I talked to him for a bit, and he handed me a huge jar of seeds to help him out. It was so much fun that I didn't even scold him for feeding the seagulls hot dogs. GROSS! That can't be good for them. 

My Bird Buddy

HELLO. Look What I spotted Parked Along Green Lake! 

Side note: My favorite part of today was during my tour. I was introduced to so many lovely people, including a gentleman named Jim who was looking dapper, dressed in a beautiful tweed blazer, headed to do group exercise. I think I'm going to learn a thing or two about fashion, grace, and elegance in my near future. This volunteering thing is going to be a blast!

My First Article

I'm back home after a week on the island (Friday Harbor). I'm sorry for not contacting people. Sometimes I become overwhelmed by going home. There are so many people that I would love to visit, and since I can't contact everyone, I often end up hiding out. Of course, I can't drive anyway, so that makes it easy to hide.

It's nice to be back. I just did my 40 minute workout - 30 minutes of running with 5 minute warm up and 5 cool down. I didn't feel like working out, but I told myself, now that I have a treadmill in my living room, I need to take advantage of the opportunity.

While I ran, listening to my MP3 player and watching the Jets come back against the Texans, I thought to myself, "I don't live to run. I run to live." What a crazy concept. I'm literally running to defeat the grim reaper. Of course, most people work out to be healthy and live long lives, but I truly feel a responsibility to exercise. While I was on the island I went for a few walks but I didn't run. I was scared to run on the road and go too far from the house. I was worried about having a seizure and not having someone help me. It's these little fears that make me frustrated. The seizures are real, in fact just as I was running on my treadmill a few minutes ago, I had to stop and get water because my right arm started slightly tingling. After I had some cold water it was better. I only had five minutes left of running so I just dialed down the speed. I thought it was important to finish my goal, to set a precedent. It's hard to know when to push and when to back off. I don't want to be a woman living in fear. I want to conquer mountains, not lay on the couch. At the same time, out of respect for everyone who loves me, I have to sleep a lot, and take it easy. Stress and sleep are the #1 killer and #1 healer for brain tumor function, respectively.

My life has changed so much, each decision, every activity. I have to weigh each choice so much, then re-evaluate. I can't just open the door and take off for a jog. Sorry if it sounds like I'm complaining. I know it's not the end of the world, I'm just trying to navigate the new rules of my life. 

Earlier today, as I was watching the national news, a girl was talking about her addiction to sun tanning. She has skin cancer, and yet still tans. She was giggling, and shrugging her shoulders as if to say, "Yep, I'm crazy, but hey, I'm hot." I was shocked, and it really got me thinking. What are people really willing to do when they get diagnosed with cancer or other illnesses? Shoot. I'm afraid to color my hair because of the dye, and here's this crazy girl tanning with cancer. I wonder if beauty can be an addiction? That reminds me, I need a hair cut. I've only had two hair cuts since the brain surgeries. I'm nervous to have someone deal with the scar. It's such a private, graphic, intimate look into my life. It's hard to be that vulnerable sometimes.

On a side note, I my first article was published. If you're interested, you can click on the following link:

Island Guardian
http://www.islandguardian.com/archives/00004017.html