Big D Turns 34

Dan tuned 34 on Saturday, and above are the remnants from the celebration. It's fun having sweets around the house, they're so pretty! Baked goods are so feminine. They make me infinitely happy. I thought I'd be all over them like a little bunny on carrots, and that I'd have to throw them away, but oddly, after sharing two cupcakes on Saturday, I had my fill. Now, I'm sending Dan to work each day with goodies for the other boys. I used to bake all the time, but stopped when I got the big C. Ever since I learned that sugar literally kills, I've cut back in a big way. It's awesome having the cupcakes and brownies around the house because it makes me feel warm, that our home is cozy and inviting. There's something about baking that just feels right, even when I've read that it's so wrong.

Things are good over here. Like I've mentioned before, we've been more relaxed about my diet which has been a lot less stressful. I'm very curious to find out at the next MRI if the high doses of artemether & sulforaphane cancel out my relaxed diet and still shrink old Hermie. It's all such an ebb and flow, there's never definitive answers until each MRI. We're walking in uncharted territory for the most part. I'm of the mindset that if Hermie grows, it will be because of my lax restrictions of sugar (sweets, wine, carbs, or things of that nature).

We were incredibly hard core from October until January. It was precise, and calculated. I can only function like that for a short while. I have to be bad, and live like a normal human from time to time. Anyway, we'll find out if I've been enjoying myself too much in about six weeks. It used to unnerve me, drive me nuts, always worrying about my choices, but luckily, with this type of brain cancer I have a lot of leeway compared to the further stages. According to the World Health Organization, "Individuals with grade 4 astrocytoma have a median survival time of 17 weeks without treatment." Jeez. Seventeen weeks is just past four months. Death? Yikes. If I was in that situation I wouldn't even play around with cheating on my diet, but since I'm not, I'm living my life allowing some happy foods, not just eating for health, but also happiness. It has taken me a bit to relax, and I might find on April 19th that it was a mistake, but hey, if I don't try it I'll never know.

I feel confident that I can cure my brain cancer, even though it isn't often accomplished. I probably sound crazy to some, maybe even to most, but just because others have heart breakingly failed, at no fault of their own I might add, doesn't mean that I will. And when I do beat this, I will find a way to dedicate my life to help others survive.

Misery Loves Company

Beautiful blooming tree in front of the Green Lake library

It's gorgeous in Green Lake today. It's sunny and the air is crisp. I just jogged the lake with Emma, stopping by the library to pick up a book that I had on hold.

Things have been great, just chugging right along with the protocol. I've made some changes and decided to allow antioxidants to my Monday-Wednesday routine. Those are the high dose days of artemether, and I'm supposed to limit my antioxidant intake because antioxidants clean up free radicals in your body. The free radicals are what are needed for the artemether to arrive into the cancer cells. Anyway, it's a long story and I don't completely understand it, but what I do understand is that my body needs an apple or a hot tea here or there - and some raw garlic.

I'm hoping that allowing my body to have antioxidants on the high dose artemether days won't hurt the progress. Guess we'll just have to find out in April at the MRI. I just can't live off of bland, boring, nutrient sparse foods. I crave tea more than I crave wine. Is that crazy or what?!? It's true though. Never thought I'd say it.

Other changes in my life include the removal of my copper IUD. I had no idea that copper causes angiogenisis (the development of new blood vessels), which is "a fundamental step in the transition of tumors from a dormant state to a malignant one," according to Wikipedia. Ooops. Thank you to my brain tumor friend Jessica for pointing that one out. Jeez. Seriously, I am so glad that I post so much personal information on this blog because ya'll keep helping me get healthier and healthier.

There are so many things out there to know, and things that can combat (or encourage) cancer. It's impossible to have all of the information, and that's why I love you all so much. I appreciate all of the help!

In about an hour my girlfriend Jess, who is currently living in Abu Dhabi with her husband Andre (awesome guy), will be arriving for a week. For those who don't know her, she's the friend who flew across the world to be with me when I was diagnosed and shaved her head in solidarity. I'm so excited to see her!! I also can't wait for Thursday when I take my chemo drink. She's one of those girls that will totally try it - I can't wait to see her gag and then laugh hysterically. Friends like her are priceless. I don't know why, exactly, I'm so excited to disgust her with my chemo drink. It's probably because misery loves company? Or, maybe it's that I'm a sucker for a good laugh. Regardless, I'm excited.

Bone Tired

I'm sorry that I'm not posting very often. I'm grumpy and....I.am.exhausted. I can't seem to read, or email. My mind is bone tired. My body is bone tired.

Not sure why I'm so tired, but I can't seem to function very well. I'm able to work on stuff for small periods of time, then my eyes get droopy and I can't continue.

I'm not thinking very clearly and it's hard to say what's causing it. Maybe I just need more sleep, who knows. Maybe it's the artemether & natural chemotherapy working their magic, burning the straw shacks in and around Hermie village. Won't know for sure until April 19th. It's hard when I'm so exhausted. The periods when I've been the most exhausted have historically correlated with fast tumor growth. Lets hope that this is the exception.

Walking to the retirement home yesterday,  through puddles.

Favorite new sandwich:
Tuna with Dijon mustard, fresh maitake mushroom & broccoli sprouts

Sabotage

It's ironic that I pride myself on encouraging others to take care of themselves, and yet here I am a hypocrite avoiding my own life saving tricks. Sometimes I shoot myself in the foot. As I said in an earlier post, I took this week off of the high doses of artemether because I wasn't feeling very well. I wanted to give my liver a break. I had every intention of taking my high dose sulforaphane drink yesterday (the natural chemo), but as the day wore on, I kept avoiding it, deciding that I would take it just before bedtime and try to sleep off the nausea. Of course, just as it always happens, when I procrastinate, I end up falling through. And as the evening disappeared, my stomach increasingly clinched, fearful of the nausea and ill effects. In my infinite wisdom, I poured myself a glass of wine (yah, genius, because THAT'S good for my liver). Then another. Foolish girl. It was pure sabotage.

So here I am the next morning with the same clinched stomach fearful of the nausea and ill effects. Why am I delaying the inevitable?!? I'm drinking a cup of black tea (infused with sulforaphane), trying to work up the courage to try again with the natural chemo. We know that this system works because our friend shrank her brain tumor with this, so why am I still staring at the glass?

Last week when Meghan stopped by with electrolyte drinks we discussed the smell from the concoction. I think it smells like a baby's diarrhea - the kind of baby that's eating whole foods (mothers know what I'm talking about). Megs thinks it smells like burnt hair. Either way, it's horrible. I find myself about to barf, even though I haven't even drank any yet. UGH. I'm so frustrated.

As you can see, I'm not being as rigid with my diet these days. I'm acting as a guinea pig, waiting to see if this MRI will show a regression of the tumor even on a more Western style diet. I just don't have the strength or will to eat as good as I did last time. I'm scared that I'm feeding Hermie, but at the same time, I can't seem to stop myself and be a good girl.

I eat well most of the time, but I know from experience that eating well most of the time is not enough. Hermie grew a bunch from July of 2011 to October 2011. It was shocking - that's when they initially asked me to start doing radiation. Sometimes, because I feel so well, and I look healthy, I forget how serious this cancer is. If I would have accepted the standard care of radiation, I would still be dealing with necrosis. My healthy brain cells would still be dying - it takes around 6 months for the death of cells to taper off. I would be bald. I would be trying to recover from frying my brain. I look healthy because I have opted out of Western medicine's procedure. I have to try and remind myself that my cancer is very serious. It's easy to forget sometimes. I want to pretend that I'm normal, that Dan and I can laugh and talk about having children someday. Sometimes I don't want to deal with reality. It seems like this is one of those times. I need to get back up on my feet and back with the program. I'm hurting myself, and those around me whom I love. This sucks.

Roasted Portabella Mushroom, Red Quinoa & Upland Cress Salad

Upland Cress Salad

1 bushel flat leaf parsley (chopped fine)

1 English cucumber (chopped)

1 red bell pepper (chopped fine)

1 bushel upland cress (chopped)

3 green onions (chopped fine)

1 large lemon (juiced)

cracked pepper to taste

I need to be eating a bushel of upland cress every day (when I'm not on the artemether). At least a bushel. And the thing is, I know it. I know what I need to do. Why am I sabotaging myself with wine and other things? I'm embarrassed and disappointed in myself. 

These guys are fishing at Green Lake almost every single day. Aren't they cute?
They remind me of my brother. He'd be fishing every single day if his wife would let him :) 

Miracle Melatonin

Hello friends! Yesterday I was so exhausted that after my volunteer time at the retirement home, I walked back to the house, stepped into pajamas, and fell into bed. I slept for three hours. I've recently started taking 21 milligrams of melatonin at bedtime. Not only does it help your sleep rhythms, it boosts your immune system (among other things, increasing the number of your natural killer cells) and has been shown in clinical trials to extend the survival time for a multitude of cancers (including gliomas). I'm only going to take melatonin on the days that I'm not doing high doses of artemether or sulforaphane, just to be safe, but I feel like it's a great addition to my cancer fighting cocktail (for the record, I took Monday, Tuesday, and today off of high doses, I hadn't been feeling very well so I figured I'd give my body a break). 

Melatonin cleans your body of free radicals which are necessary for my artemether, so I'm pretty sure that it's a bad idea to take it during high dose times. Other pharmaceutical chemotherapies have been shown to work synergistically with melatonin. It's actually pretty amazing. It's too bad that doctors are scared to include melatonin during chemotherapy, it would increase efficacy and extend survival time. There's several research studies proving it. If you're interested, check it out. There are a few studies in the United States, but most have been conducted in Italy. 

Anyway, since I've started taking melatonin, I'm sleeping better, but I've also been pretty exhausted. I take it as a good sign though. I hadn't been getting enough sleep, and the melatonin is forcing me to sleep more. 

On the walk to the retirement home, I saw this amazing creation. I don't even know what to call it. Someone tied a bunch of red carnations into a type of mobile. It's beautiful, and such a fun surprise. What a cool act of kindness! Someone was really in the Valentine's Day spirit. 

The first daffodils I've seen around the lake!

Radiation: Simply Foolish

Alright, alright....I'll admit it....I've been depressed. I've managed to continue living, putting one foot in front of the other, but deep down inside my soul I'm not my happy self. It just happens sometimes. For those who have been around me, I'm sorry. I've been cranky. For example, I said the following during the Super Bowl: "How stupid is this halftime show, Madonna isn't even singing. This is such a freaking joke." Woah, grumpy! Yikes.

Here's a few photos taken over the past week, see if there's anything you recognize:

I am pooped. This protocol is exhausting. Basically, I'm doing natural chemotherapy. It's high doses of artemether twice a day on Monday, Tuesday and Wednesday. Thursdays are the high doses of sulforaphane. On those days I can't even eat because I'm so nauseous. I curl up into a ball and want to die. At least I don't have to lose my hair :) Then, on Friday, Saturday and Sunday I drink my green upland cress drink with daikon radish then in the afternoon I take various mushroom supplements and shark liver oil. On those three days I can finally eat antioxidant rich foods (I can also cheat if I want).

This whole thing takes a lot of work, and a lot of thought. It's wonderful to have this opportunity, but man is it draining.

I can understand why people give up and just listen to their doctors. It's hard to put in the research, the shopping, the preparation, the effort, and the day-in day-out reminder of a horrible cancer that does not have a positive outlook.

Walking home from the retirement center today, I picked up a book that I had on hold at the library and I want to share an excerpt. The author was diagnosed with a glioblastoma in '95, the most aggressive and deadly brain tumor out there:

"In the meantime, conventional medicine has its limits, and cancer patients need to explore treatment options not yet incorporated into conventional medical practice. Patients must be willing to go beyond their physicians' advice, and sometimes follow options contrary to that advice. This is not an easy road to travel. Newly diagnosed patients are confronted with a disease about which they are largely ignorant. For better or for worse, they often are at the mercy of their physicians. Some physicians will actively resist any approach to treatment other than their own, even when they concede that their treatment offers little promise. Therefore, patients need to learn how to acquire medical information on their own while exploiting their physician's knowledge and expertise." - Ben Williams (Surviving "Terminal" Cancer)

This book gives exactly the affirmation that I need. It helps remind me that I'm not crazy to avoid radiation, that I'm not stupid, that maybe I'm I pioneer. Maybe? Maybe I'm a pioneer? I'm not the first to use this treatment and have success, but maybe I fall into the category of pioneer. I like the ring of it. But as I write this I think maybe I should stop fluffing my feathers.

A final quote from the book that also makes me feel better:

"Oncology also ignores the critical distinction between diseases for which effective treatments exist and those for which effective treatments are lacking. In the latter case, the practice of prescribing standard treatments that have a known record of failure is simply foolish. Yet, for many cancer patients, the standard treatments are all that are offered." 

That quote directly speaks to me. That is exactly my journey with my oncologists with regard to radiation. It seems it would be simply foolish to do it. It has a record of failure.

Am I A Binger?

Aaaaaaaarrrgh. I'm a bad, bad girl. I think it has to do with my blood sugar levels. I'm going to blame it on that. This is my routine, I'm sure you've already heard it before, but here it goes: 4 days on high doses, twice a day. I wake up in the morning and fiddle around until I take my pills at about 8:30 - 9:00 am, then I wait three to four hours before I can eat. So....I can eat at around noon or 1:00 pm. Then, I stop eating at 4:00 pm and take the second dosing at 8:30 - 9:00 pm. That only leaves about three to four hours of time to eat. I get full so quickly that I can't even eat that much. I do that for four days then I have six days off. During the high doses I need to avoid my healthy smoothies and high antioxidant foods (they clean out free radicals which I need to help my herbs attach to the cancer cells). By day three I'm starving and craving everything from my delicious green drinks to sourdough, burritos, ice cream, wine, and artisan cheese. Ugh...my body just talks and talks to me telling me all the delicious foods that it needs, IT NEEDS, it says. On day 5, the first day I can eat normal foods, I crave eggs on toast, or a turkey sandwich (totally gross), or a burger (yuck). I crave crazy foods that I never normally eat...well, except for the eggs on toast - that's a special treat about once a month.

On Friday Danny and I ate Mexican, on Saturday I ate a lamb burger, yesterday I ate a burrito. What is wrong with me?!?! I can't seem to stop myself. Eek - am I binger?!? That's so embarrassing.

The first phase, after the October MRI, was so easy. I do well with consistency. It was easy to take my my pills each night. I could drink my green smoothies each morning, and make sure I was done eating at 4:00 pm. Each day was the same, very simple to implement. I like things that I don't have to think about, easy rules that always apply. This whole 4 days high dose, and 6 days off is very difficult to deal with. It probably sounds really easy, I mean, it sounds easy as I type it, but I promise you it is definitely not easy. I believe my blood sugar levels are fighting me. My body loves the green drinks, and for those four days it is tough to avoid them. I feel like my head is constantly spinning, always trying to figure out what I can have or what I need to avoid. It changes so much. On the 6 days off I'm supposed to eat high doses of special sprouts, maitake mushroom supplements, turmeric supplements, ginger drops, shark liver oil, and it's all so confusing. This protocol is, in my opinion, cutting edge. There are no distinct rules other than the whole antioxidant thing, and knowing when to stop eating so that pills will digest properly.

I need rules. Aaaaaaaaaah. AAAAAAAAAH.

I did manage to drink three different fresh pressed juices, full of veggies and fruits over the weekend. That should help counter act the bad food choices that I've made. Sometimes I feel completely crazy. This is one of those times. How can I cheat so badly with my food choices? I don't know. I understand that the bad food feeds little Hermie, but sometimes my body overrides my mind. I now can completely understand people in my position who just flat out don't want to change their lifestyle even though it may save their life. It's hard. It's so effing hard sometimes. When it's sunny outside, I want to walk over to Dukes with Danny and sit on the patio with a glass of white wine and a cheese burger. Or just the wine.

This morning, trying to completely jump start my digestion and apologize to my poor confused body, I made my most powerful smoothie yet. It's completely random, but it was surprisingly good! Be careful though, make sure you're hungry. The below list will make 2.5 tall glasses of goodness.

1 bushel of upland cress (roots removed)
1/2 bushel of cilantro
1 English cucumber (ends chopped off)
1 apple (core removed)
3 carrots (ends chopped off)
1 banana (peeled)
1 inch fresh ginger root (peeled)
1 inch diakon radish, skin and all

I'm sorry for complaining this entire post. It will not always be this hard. I truly believe it's my crazy fluctuating blood sugar level. That has to be it. Somehow it feels better to blame it on something.

"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 

Happy New Year

I received the perfect gift on the last day of 2011. I was able to spend the morning with my brother, his wife Courtney, and their two children Isla and Wade/Toby (mom calls him Toby and dad calls him Wade). 

Courtney, Wade/Toby, me & Isla

 Isla & me down by Green Lake

My newest nephew Wade/Toby

This year has been a serious journey. It started as I finished up my final speech therapy sessions. Then, I had the chance to visit Jess & Dre in Abu Dhabi. In February, Dan and I shared vows beneath the Eiffel Tower during a 24 hour layover in Paris. In the spring I was able to create a presentation and share my brain cancer story with three different Rotary clubs around Washington. In the summer, I had the chance to visit my Polish relatives, and hug, bond, laugh, explore, and fall in love with them. Soon after, arriving home, Danny and I signed a legal marriage certificate. He's all miiiiiiineee!! Woo hoo!! Three days later, unrelated, I started having seizures and worried that my health may be declining. The next MRI showed our worst fears were correct. Little Herman, the tumor in my brain, was getting taller and fatter, faster than most of his peers. Instead of following my radiation oncologist's recommendation, I refused radiation and immediately started an alternative supplement program with artemisinin, completely changed my diet, amped up my cardio, and added strength training. Within 9.5 weeks I'd lost 19 lbs. I'm currently feeling wonderful, and I'll find out in less than two weeks, if my program is effective in keeping little Herman at bay. 

Along the way I've had friends support me with fundraisers, loving emails, text messages, cards, photos, hugs, and laughter. Even though I know that I am a person living with brain cancer I feel happier than I ever have in my life. I have everything to live for, and I am so grateful for all of your support. Thank you for helping me have another wonderful year! I enjoyed every single day. Even the challenging ones. I hope to share many more stories in the coming twelve months. 

Please have a fabulously hilarious and awesome New Year's Eve! Please be safe, and know that you're loved. So don't do anything stupid like drive drunk! :) 

Cheers to another amazing year!!

Final High Dose Day (First Round)

I got a little nervous yesterday morning, fearful of a seizure, so I started with a 3-3-3 (butyrate, artemether, and piperine) instead of the 4-4-4. I took the pills at around 9:45 am and then I grabbed the necessities, a tall glass of water, the cordless telephone (in case of emergency), pre-seizure pill (just to be safe), several books, Emma and Mr Bingie for cuddling. The morning was quite uneventful, though. I quarantined myself in bed until 12:30 pm when I was starving and had to head down for some breakfast.

Since the side effects were nil, I decided last night to do 4-4-4. No effect, and this morning I took another 4-4-4. Tonight is the last pill set, and from then on I'm just going to focus on my diet, and exercise. I need to read up on anti-inflammatory foods. My biggest focus is on reducing inflammation so that the MRI scan shows as clearly as possible.

I'm excited about this MRI but, of course, I'm a bit nervous. My body feels wonderful, I have more energy than I've had in ages, my skin is clear, I've lost around 18 lbs (I had packed on some weight after the seizures). When I originally checked in for brain surgery in April of 2010, I weighed 151. I now weigh 141. The great part is that I still have fat on my body. I honestly didn't know that I had THAT much body fat. It has been pretty eye opening. I still wear the same clothing size, but everything fits better. That's nice. You'd think that the fat-loss of this diet would be the best part, but it's not. The most exciting part of these past several weeks has been the way that I feel. I am healthy and alive. It's miraculous.

On a side note, I had a crazy dream last night. I have a habit of having those. I dreamt that I was in a remote area down around the Mississippi sound, somewhere in south Louisiana. I was in a house on a hill, overlooking lush green trees and the beautiful water. Danny was working on an oil rig in the bay, which I could see from the living room window. On my hip was my friend Jenny's three and half year old daughter. All of a sudden, from the south east I noticed a funnel cloud over the water. I remember saying, "Look Bailey, see that funnel cloud?" I glanced over my shoulder, and when I looked back there were three, one headed directly for our house. I ran to the next room and ushered her into the bathtub with my mother. With nowhere else to hide, I returned to the living room and scrambled under a table, taking a deep breath. I was aware the tornado/hurricane, would be crashing down immediately. I took another deep breath and closed my eyes as I heard the crashing of glass all around me. I felt my body levitate in air and I sensed that I had been caught up in the whirlwind. My biggest concern was the impalement of some sort of foreign object, but I understood it was out of my hands. I didn't panic, I just hoped that everyone in my life knew that I love them all dearly. I remember the whooshing of the wind, and the centripetal force. I hoped I would survive, but I knew I had to acquiesce to the forces around me. The next thing I realized, I was waking up surrounded by debris. The sky above was a crisp blue, and I was completely uninjured. I dug around to find my mother, Bailey, and my father, and they were all unharmed. I hopped in a car (my college car, Buttercup, a 1979 diesel which I've long since sold) to head down to the waterfront to find Danny. As I was driving, people were walking, looking for people, some were crying, others were in shock. Then I woke up.

More "Hope"

The first day of 2-2-2 twice daily went great yesterday. I was dizzy and felt a little bit disconnected to my limbs, but that's no big thing. I was able to avoid eating until noon, at which point I made a homemade humus bok choy sandwich, and ate an apple. The most noticeable side affect came at 11:01 am (I'm taking copious notes). I had a sharp pain in my head, then I had a rushed taste of metal in my mouth. Within seconds it was gone. I'm hoping that it was a massive explosion of cancer cells, that all of the iron spontaneously combusted, and now my body is flushing out the debris. A girl can dream can't she?!? :)

It's nerve wracking to put myself out there with this new treatment. I kept worrying last night, what if it's a bust? But then, while we were laying in bed, I asked Danny to give me his mental illustration of the artemether as it gets digested. Of course he leant to a military analogy. He kept saying things like, "The artemether soldiers are marching through your intestines." And I asked, "Are they singing a marching song like the do in the movies?!?" It was fun to take the stress out of the situation. I'm lucky to have a man that will play along.

Today I have a break from the artemether, piperine and butyrate. Tomorrow, though, we double the dosage and take the pills twice. Instead of the 2-2-2 twice daily, it will be 4-4-4 twice daily. I'm excited and nervous at the same time. I keep telling myself, "Why not believe that I can beat this. Why not believe that the artemether will work. Why not believe that I can change my destiny. Maybe ridding myself of this cancer IS my destiny!"

I want this protocol to work so badly, not just for me, but for all of my friends that I've met that also have brain cancer. I am in the perfect position to try new things. I have a supportive husband that never ceases to amaze me. I have a great family that helps me stay on track that researches all of the alternatives. I have friends that walk hand in hand with me, that keep me laughing, and smother me in hugs. I don't have the responsibility of children. I have the drive to stay on course. I want this to work so that I can be a guinea pig to help others change their destiny too. There is no reason why we can't beat this. Doctors don't even really know what causes brain cancer. They believe it could be a wide variety of things. If there are a wide variety of causes, then it's fair to reason that there could multiple cures. We just have to figure them out! And, if this artemether doesn't work, then that doesn't mean that other things won't.

Here's a fun photo from last night's dinner.
It looks pretty boring, but it was surprising filling.
Shown: Homemade spinach and jalapeno humus, raw broccoli (for dipping), and an everything but the kitchen sink salad (purple kale, arugala, spinach, green onions, garlic, tomato, avocado, fresh cracked pepper, squeezed lime, & extra virgin olive oil)

Danny is such a sport. Often nights, dinner is a simple meal. Last night might have been the most simple meal in a long time. I think, maybe, I was trying to make up for the naughty martinis from Saturday night. Like I've always said, I have to be just a little bit bad or I get stir crazy. The little gremlin in me needs to be fed, then I can go on with strength and determination.

On another note, I have an amazing story of friendship and love. I have no idea how my life has been so magical. I am the luckiest girl. I have been surrounded with literally, living angles. Do you remember the piece of art that I made for my friend Meghan's philanthropy? It was called, "Hope." Anyway, last night, Meghan stopped by with a huge package, she had called earlier, asking for help. When she arrived, she started cutting open the package, and I just assumed she needed a bunch of cutting done for someone's Christmas present or something. Nope. She needed me to sign a few things....

Meghan bought my piece of art at the WPIG Pigture Perfect Art Auction so that she would have the rights. She then came up with the idea to contact a bunch of my girlfriends (shown below in the row boat), to chip in to start a site on Etsy.com to fundraise. It's called Hope For Jess and it's prints of my piece of art. How cool is that!?!

The girls paid for all of the prints (there are regular prints and canvas prints). Megs said that the prices are a bit dear, but that's okay. If they don't sell, maybe they can put them on sale :)

Girls Weekend 2011
Top: Libbey, Lauren, Kristin, Jenny, Michelle, Laura
Bottom: Jessaca, Meghan, Julia, Me
Not Shown: Jessica (Abu Dhabi) & Courtney

I am still, so blown away. This is exactly why I should be doing this protocol, and whatever protocol may come my way in the future until we figure this out. It is imperative that someone like me work as a guinea pig so that others that don't have the energy or time, or resources, can get well. I constantly feel love and support, and I am just so grateful for all of the friendship and generosity. I feel like we're all working together as some sort of badass team, working for the greater good. Maybe that's a lofty attitude, but it's just how I feel.

On a final note, I am happy to share that three years ago to the day, Danny and I had our first date. It was the most magical night of my life. At one point, he insisted that he carry me like we were going over a threshold, all because it was snowing and I was wearing heels. It was perfect in every way, and it makes me cry with big fat tears of joy that we came together. He makes me happy from morning to night. Even when we're cranky there's always laughter. If you've never met him, I'm sure you can tell how amazing he is from the stories on the blog. He has never wavered in his support or love. He found me sexy even while bald with 52 bloody staples across my head. He shuttled me on two hour drives in each direction to doctor appointments, to rehabilitation appointments, his dedication never wavered. When we didn't know if I'd read again, or get back to running and living my life, when I could only use one syllable words, and we didn't know if I would ever have enough energy to truly LIVE, he was happy just cuddling on the couch, or resting silently. I know that he is my soulmate, that I am the best person I can be because he supports all that is good. A partner like Danny is a miracle to come by, and I think about that every day. When I'm stressed, I just picture his face and it soothes me. He is a main reason why I have the will and desire to strive for perfect health. I know it will be an ongoing journey for the rest of my life, but with Danny by my side I know I can do it! Cheers to Danny, my love.

Pursue New Understandings

This weekend, Danny and I first stopped at my parent's house for a slumber party (when leaving, my mom loaded us with two of every vegetable available in the organic section from her supermarket - gotta love moms!), then headed to an Elves getaway over in Chelan at a friend's lake house. It was so much fun goofing around, listening to music, relaxing in the hot tub, and laughing with friends. Since I was off the artemix, I even enjoyed a couple of martinis. Friends and family truly are the best medicine.

Coming Up Over Navarre Coulee

Now, I'm back at home and I've just finished the first dosing of my artemether (9:15am). Calculating it by weight (thanks Dad & friend), I am starting with two pills of the following: artemether (40mg ea), butyrate, and piperine. I take it on an empty stomach. Then, I refrain from eating for a few hours (two or three, as long as I can manage). During the day I eat normally, but I need to stop by 4:30pm so that I can take my second dose (same quantities) on an empty stomach at 9:15pm.

I'm excited and nervous to see what happens. Today I'm starting with the 2-2-2 twice a day, and tomorrow I'll do nothing, making sure that there aren't any odd side effects. Assuming everything's okay, on Wednesday I'll start 4-4-4 twice a day.

When I first started taking the artemix, back a few months ago, I remember getting very tired and periodically dizzy. I'm already feeling the dizziness. It's probably a good time to go lay down and see if I can read or just rest my eyes. I think this week is going to be pretty subdued while I do this extra dosing. I'm only going to do this protocol for one week, then, after that I'm going to work on building my immune system. I need to clean up any cancer cell die-off that is occurring so that it doesn't skew the results of the MRI.

On another note, I've been thinking a bunch about what it means to be happy, and I read this:

"Genuinely happy people do not just sit around being content. They make things happen. They pursue new understandings, seek new achievements, and control their thoughts and feelings. They also learn from others." What a great quote.

Off The Artemix

Photo Of The Day: Sleepy Kitty - Mr. Bingie Butterbutt

I stopped taking the artemisinin last night. Phew, that's going to make life easier. It has been serious dedication to stop eating at 4:30 pm each night. There are still a few pills left in the bottle, but we stopped because there were a few signs that perhaps my liver and kidneys were getting tired. I won't get into the details - nothing scary, just a little too much information. For the next few days I'm going to try and flush my system with more of my vegan diet (especially my green smoothies), and lots of water. In a couple more days, when I feel like my body is ready, I'm going to start the high dosage of artemether. Our goal is to do a 1-2 punch on the cancer cells and see what happens. I should only be on the high dosages for 3-5 days, we're going to feel it out. After that it's smooth sailing until the MRI on January 13th.

I'm excited and nervous about the transition. I'm hopeful and excited, but at the same time, sometimes I worry that I haven't done enough. The artemisinin is shockingly non-invasive, and easy to consume, I wonder if it's even working. I try not to think negatively about this treatment, but I'm human. Things just pop in my head from time to time. I'm excited to get the results and find out. Patience is incredibly important, and yet so hard to come by. It probably doesn't help that I read Tug McGraw's book recently, which in its final chapter detailed his death from a glioblastoma which is what my brain tumor progresses into (eventually). Big mistake. I don't think I needed to know all the heartbreaking details. I've been looking to books and videos to uplift me and give me strength. The problem is that some books are just flat out sad. It's tricky stuff.

At least, if this protocol doesn't show up as effective, I still have more tricks up my sleeve. That, my friends, is what I'm so grateful for today. There are always more ways around the same problem! I'm also grateful that I only have the diffuse astrocytoma and not the glioblastoma. I'm so grateful for that!!