Balancing DHA & EPA

Vegetarian DHA From Algae (200 mg ea pill)

Bushel of Purple Kale
Banana
4 Tablespoons Fish Oil

Breakfast. Sorry for complaining yesterday. Sometimes I just need to barf out my feelings. I'm doing better though! Here's my breakfast drink. It has four tablespoons of fish oil, and I've read that it's important to balance out the DHA and EPA in your diet to maximize the effects against inflammation (a promoter of tumor growth). One tablespoon of my fish oil has 500 mg DHA and 800 mg EPA, so I took 6 DHA pills (200 mg each) to even out the four tablespoons. Not a delicious breakfast by any means, but hey, I downed it with a verbal toast to Hermie, swallowing the pills like fishy candy. The pills are vegetarian, but they taste and smell like fish. It's weird.

Anyway, little by little, Mr Herm is being knocked down by my arsenal of tricks. I have to believe that.

Dan and I were talking about it last night, as we were falling asleep in bed, we honestly have no expectations for the next MRI. It could show a massive decrease in tumor cells or an increase in tumor cells. We have no idea. That's the thing, you can be hopeful, but if I was to feel too confident I believe it would be incredibly dangerous - it could make me complacent. No one wants to be disappointed.

Grumpy Girl

When I'm in a bad mood, I figure it's a great time to get out for a run. Today was no exception. We were a perfect pair, Mother Nature and I, both cranky. The wind slapped my face over and over again like a cold fish. The rain drops soaked me through every article of clothing, all the way down to the toes.

I'm not sure why I'm in such a bad mood. I guess I'm caught up in the seriousness of having cancer. This can happen when I'm on strict mode with my diet. It's wonderful to eat supremely (why does that word make me think of pizza) healthy, but I hate the fact that my food sins literally are punishable by death. It would be nice if my food sins were just punishable by fat. At times, it's an overwhelming feeling.

It's weird that almost two years ago I was diagnosed with my brain tumor. And almost unimaginable that I have been living in three month spans ever since. My life is completely dictated by my three month MRIs, scheduled just to watch my cancer grow (Except for the last MRI. Phew!). Oddly, I find that I've been appreciating life, the daily gifts, but the big picture is lost. It's wonderful living in the moment, but there's something about having long term goals. I realize that life changes for everyone, that it's difficult to plan, but it's different when your survival is literally up in the air, and constantly shoved in your face. It's a lot.

Tuesday Night's Dinner

Tonight's Dinner

Time To Work

Started playing with my pills this morning. Not exactly the beer can towers of college days. Yesterday, at the gym, I weighed myself. YIKES. In January at my last MRI I weighed 144. Now, I weigh 150. I guess I need to take this a little bit more seriously. It was quite the wake up call. Dan and I talked about it for quite a bit last night. We are very strict right now, this whole week I'm on a plant based diet (other than a glass of milk each morning and evening for pills). We're going to take Saturday off to celebrate Saint Patty's day with friends, but come Sunday we will be back on the whole foods diet of months past. We will not be cheating again until after the MRI. It's been a lot of fun, but it's time to get back to business. I have to say, when I stepped on the scale and had to move the little black weight over further and further to the right, my stomach pulled into knots and my sweat pores started tingling. I was in shock.

Oh well, I can get this back on track. I love taking a week or so of only eating plants. You can eat whatever you want, as much as you want. It's actually a lot of fun. That probably sounds crazy, but it's fun to change it up. Damn. 150? Ugh. Jessica Lynn. I'm not so upset about the numbers necessarily, it's more the fact that any extra weight feeds Herm. That's always the kicker. But, each day, each meal, I decide what I'm going to put in my mouth and each step is a choice. I'm ready to conquer this next month and see what's going on in my brain at the MRI. I have to relax and play a little, but now it's time to work.

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.

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 

Damn it.

Top View Of My Brain

Well shit. Sorry to be the bearer of bad news, but we need to do more. You can see three areas of tumor cells in the lower right hand side of the image. We will have the official report on Wednesday which should compare this MRI with the last MRI, giving measurements. For now, we know because we've seen the compared MRIs for the past several scans, that the tumor area is growing. What we don't exactly know is how fast.

Time for a more serious protocol, perhaps the high dose sulforaphane. We're bummed, but not broken. Time to regroup and try more aggressive tactics.

Today, and tonight, maybe even all weekend, Danny and I will hide. I'll start my high dose artemether tomorrow morning until we can get our first shipment of sulforaphane pills.

It's promising, looking at the scans, that the growth of the tumor appears to have slowed down. Like I said earlier, we'll know more on Wednesday.

Lots of ups and downs, and I'm exhausted. Somehow I feel like I'm just now getting to the meat of this cancer. It's scary. I'd be lying if I said I wasn't afraid. But, I also have a calmness.

Over the past 24 hours as I was stressed, laying in bed with my eyes wide open, or in the MRI trying to be as still as possible, I kept my mantra, "We are all connected. With everything, we can give love." I still had a great day joking with the receptionist, and the MRI technicians. I genuinely smiled and laughed with the IV nurse, even when she couldn't find my vein and dug for ages. Somehow, my pain receptors were more numb than normal, and I was able to live in the moment, realizing that the world doesn't revolve around me, that with each person I came into contact with, has a life, and their own problems.

This cancer is my problem, but lots of people have burdens. I'm just lucky enough to have a rooting section. Another thing I'm grateful for.

Thank you. Thank you for supporting me. I appreciate all of the phone calls, text messages, emails, letters, comments, and all of the prayers. We will beat this. I BELIEVE!!

Photos Of The Day

Green Lake 

Fish That Remind Me Of My Brother Kaal

We're headed out to the hospital, but I needed to upload yesterday's photos. The bottom one reminds me of my brother whom I love so much. He can never make the MRIs since he lives back in Friday Harbor, but he's always with me in spirit.

No More Fishy Blender

Oh dear friends, YIKES, the MRI is on Friday!!! Danny and I are trying another fast today, we stopped eating at about 8:00 pm last night, so I'm hoping to make it to 8:00 am tomorrow morning. It's great to get another jump on things. My favorite part of fasting is not having to worry about cooking, or going to the grocery store. It's also handy because my blender is on the fritz. Here's the problems with the blender:

In Order Of Importance:
1. It stinks like old fish oil. GROSS.
2. The blades are mangled so they don't blend things well
3. Even after five minutes, there are solid chunks of bananas
4. The blender sounds like a racing motorcycle, sporadic and uncomfortably high pitched
5. Did I mention the fish smell
5. Did I mention the inability to blend even the softest of items....like a banana?!?

So, after receiving an email from Meghan (my girl friend who is managing Hope For Jess on Etsy), saying that a few more art pieces have sold, I can finally buy us a TurboBlend Vitamix!!! Yay!!!

For those who are not familiar, the Vitamix blenders (there are several types) are so powerful that they can blend whole almonds into almond butter. You can grind whole grains into a powder. These machines are AMAZING! I'm mostly excited to have superb green drinks where I won't have to gag down chunks of broccoli and kale. Kale is very scratchy on the throat, and always triggers my gag reflex. I need to eat 5-7 servings of power packed veggies each day to keep the inflammation down in my body, and green drinks do such a great job of packing the goodies. Thank you to everyone who has bought art, or donated to my account. I truly appreciate it so much!! There is such a relief, knowing that I can pay for certain bills, or purchase necessary things (like a powerful blender - that has a 7 year warranty!).

On a side note, my mom gave me a little bird feeder to place outside our living room window. I've been watching for the past two days and birds have no idea that there's a delicious treat out there. How do I get birds to swing by? Any ideas?

My Lonely Bird Feeder

We're Going To Beat This!!

Things I learned while running the lake today:

A three legged dog is just as happy running as a four legged dog
Unicycles are a surprising efficient mode of transportation
Squirrels love playing tag
Ducks are equally adorable sleeping or awake

I've been so excited about this upcoming MRI that I can't stop myself, I've ran the lake three days in a row. I'm not fast, it takes about 45 minutes, but who cares, it's a lot of fun!

I feel so wonderful, full of energy, refreshed, alive, I just feel like pinching myself. This is such a change from the weeks before the last MRI. Even if the results from this scan are poor, I'm not worried. I'm under the opinion that if I feel wonderful, that's 80% of my life. The other 20% which is the cancer is just that. Just cancer. I still have a "B" in life. That's incredible!

Although I am, still, a little nervous, I'm mostly excited, and I'm not really afraid. I'm a bit afraid (how could you not be), but mostly I'm just happy. I'm happy to have so much energy, and to have such a wonderful life.

As I ran yesterday, nearing the end of my loop, all I could think about was the little things in my life that make everything so great. I am the most grateful I've ever been, and I honestly didn't think I could get more grateful. It's what I think about all the time. I'm grateful that I have Danny, that I live in Green Lake, I'm grateful for my health, I'm grateful for my family, I'm grateful for my friends, I'm grateful for the artemisinin, I'm grateful for PCC and all of its healthy produce, I'm grateful for our home, I'm grateful for our pets, I'm grateful for squirrels, and I'm grateful for moss because it's so pretty (I could go on, but I'm afraid it'll be annoying).

This morning, as I was sprinting out my run, in the very last steps I thought to myself, "We're going to beat this!!"

90-95% Of Cancer Rooted In Lifestyle/Environment

Almost Merry Christmas! Kind of, I'm two days early. It feels like Christmas (even though we don't have a tree). It's a combination of the smells outside (it's sooooo cold), and the lack of traffic outside our living room window. This is the first Christmas that Danny and I have had, just the two of us. I'm excited! It's not going to be the homemade cinnamon rolls that my mom always makes, but a green drink in pajamas will still be fun.

I finished the 4-4-4 last night and I'm so grateful. It was starting to make my stomach upset and the right side of my body was tingly. The tingles are good, that means it's working. My digestive system is still a little bit off, so I went for comfort food this morning. My old favorite toast with Dave's Good Seed Sprouted Bread, an egg (free range of course with no gross hormones in the chicken or its food) doused in tumeric, with a massive clove of garlic chopped on top. It is the first time I've had an egg in two months.

The toast still isn't sitting well, but I'm sure it'll even itself out. I'm going to wash it down with some broccoli tea and see what happens.

On a different note, thank you to everyone who donated to Matt's Movember quest. Thank you to those who've donated to the Islander's Bank account in Friday Harbor. Thank you for those of you who have already bought from the hopeforjess site on Etsy. Danny and I have been talking, constantly, about how fortunate we are. The money that you've donated has given us such a relief. We are still getting medical bills from 2010. Isn't that crazy?!?!? My goal is to continue to get healthier and healthier, treating my body with respect and kindness. I'm excited for this MRI because I believe my brain will look better than it did in October.

I believe I can beat this, and my confidence isn't based in hope alone, it's research backed. Dan and I were recently sent a thread from a cancer post, which included several research studies. Below is an excerpt which I found encouraging (to read the full post and access the research studies please click here):

Cancer is a Preventable Disease that Requires Major Lifestyle Changes
Abstract. This year, more than 1 million Americans and more than 10 million people worldwide are expected to be diagnosed with cancer, a disease commonly believed to be preventable. Only 5-10% of all cancer cases can be attributed to genetic defects, whereas the remaining 90-95% have their roots in the environment and lifestyle. The lifestyle factors include cigarette smoking, diet (fried foods, red meat), alcohol, sun exposure, environmental pollutants, infections, stress, obesity, and physical inactivity. The evidence indicates that of all cancer-related deaths, almost 25-30% are due to tobacco, as many as 30-35% are linked to diet, about 15-20% are due to infections, and the remaining percentage are due to other factors like radiation, stress, physical inactivity, environmental pollutants etc. Therefore, cancer prevention requires smoking cessation, increased ingestion of fruits and vegetables, moderate use of alcohol, caloric restriction, exercise, avoidance of direct exposure to sunlight, minimal meat consumption, use of whole grains, use of vaccinations, and regular check-ups. In this review we present evidence that inflammation is the link between the agents/factors that cause cancer and the agents that prevent it. In addition, we provide evidence that cancer is a preventable disease that requires major lifestyle changes. A more detailed discussion of dietary agents that can block inflammation and thereby provide chemopreventative effects is presented in the following section. Most carcinogens that are ingested, such as nitrates, nitrosamines, pesticides, and dioxins, come from food or food additives or from cooking.

If 90-95% of cancers are rooted in environment and lifestyle, shouldn't we be able to reverse most them? I still believe that my cell phone was to blame for my brain tumor. I think it was the radiation. Lots of people think I'm misguided, but I don't care. They don't do the research, and most people don't know to check WHO is doing the research. Most of the studies stating that cell phones are safe have been funded either directly or indirectly by the major companies that profit from them. Anyway, enough of my rant. Back to the cancer.

My body isn't going to right itself, I need to build up the Natural Killer cells, they're the little warriors of your immune system that go out and clean up tumor cells and viruses. It's been proven in studies that people with cancer have a depleted amount of NK cells. So, just by eating "clean" food will not, alone, fix my problem. This cancer is a whole body disease, it can not be eradicated with food alone. I need to build up my immune system, and cultivate my NK cells. With supplements you can increase your NK cells, and often after a period of supplementation, your body starts to create more on its own. I just need to train my body, and give it a jump start of sorts. Anyway, I think I'm getting to technical in all of this - sorry. I tend to get really excited about this stuff.

I want so badly to fix this cancer and help others. I don't mind doing the leg work. It would be my ultimate dream to get to the point where there is no detectable cancer in my body and then help others achieve the same outcome. That would be the ultimate. I can not imagine how wonderful that would feel, to replicate the success. But, first things first, I have to start with me.

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.

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!!

I am Healthy and Strong

It took me a bit, but I finally hooked my camera to the computer. Here are a few fun photos from the WPIG Pigture Perfect fundraising event a month ago.....

Great Minds Think Alike

Mom & Dad

My Thoughtful Hilarious Beautiful Seattle Girls

I have such a wonderful life. I can't even believe it. This past weekend, Danny and I hid from the world. We watched old episodes of Sons Of Anarchy (sometimes I have to close my eyes). We walked around Green Lake. We laughed. We went and checked out the luminaries down by the water - it was beautiful even though I have no idea what it symbolized.

I am so grateful to be alive! I still get doubt and fear. It pops up just for a second here or there throughout the day, but I've started combatting it. Each time I fret, and worry about this cancer, I take a deep breath and I say, "I am healthy and strong." And it's true! I am healthy, and I am strong. I will not live in fear of this cancer. Instead of fearing this coming MRI (next month to the day), I am going to use my logic. I have not had a seizure in over four months. I can walk around Green Lake, even if I can't always run it. I have started lifting weights three nights a week. I am capable. I feel great. I am healthy. I am strong. Most of all, I'm happy.

Luminaries Around Green Lake

The Time Will Come

I'm grateful for so much each day. Things pop in my head, and then I start smiling. It can be as simple as, "My house is so rad. It's full of daylight even when it's rainy outside!" Lately, though, I've been going for the big ticket items. My mind has been full of happiness thinking about how wonderful it is that I haven't had a seizure since August 5th (the day before my birthday - I was probably just too excited!). I haven't taken anti-seizure medicine since September 27th. And, biggest of all, as Danny and I were running errands today, I realized that I could have just finished last week as my first week of radiation, but instead, I'm happy and healthy and trying to kill this brain tumor with alternative means. I realize that I might have to do radiation (eventually - if there is no other option, and it starts completely growing like an even nastier weed), but right now I'm enjoying the ability to take this into my own hands.

Yesterday, my parents, Danny and I met with the other brain tumor fighter that has been taking the artemisinin. We met with her and her husband and we shared notes. We talked all about the different protocols, the different research out there, and we reviewed both of our pathology reports and all of our MRIs. It was fantastic and incredibly inspiring. Our friends have managed to completely shrink her brain tumor through alternative means. It's unbelievable. Although we had never met, there had been email after email for the past year or so. We combined heads and together, I feel like we can conquer this.

At first I was very concerned because there are so many different types of stage 2 astrocytomas (which we both share), I wasn't sure if we were matching apples to apples. But after sharing our pathology reports, our friend has the same type, along with the "negative for loss codeletion of chromosomes 1p/q 19p/q (can't remember off the top of my head which one has which letter). Anyway, my point is that I have those two chromosomes, as does my friend, which means that our tumors are more aggressive and signify a shorter lifespan. Anyway, after watching her scans, and seeing her brain tumor shrink and shrink, scan after scan, I knew that things were looking up!

Maybe surviving a brain tumor isn't just about luck, or fate, or genetics. Maybe, just as I was hoping all along, it might be treatable or even curable by using healthy choices, and by following herbal research. There just might be a way to treat a brain tumor with diet and supplements. Sometimes the supplements are in massive doses, but who cares! It could slow, halt, or kill the tumor. Wow. This is so big. I just have to keep positive about this process. I'm taking the safe side, unlike my friend who took some pretty substantial amounts (with no serious side effects), but I figure I can still up the ante at my next MRI if things aren't up to my liking.

I'm just so grateful to have this opportunity to squish this with healthy means. I'm forever indebted to our dear friends.

It is going to be so hard to wait for my next MRI in January. I want to start seeing results now! I keep telling my overzealous soul, "Patience little friend, there is no rush. Enjoy each moment, each day, each kiss, each hug, each laugh, each smile, each apple, each salad, each green smoothie, each new smell. The time will come." Each time I have to tell myself that little mantra, my core warms, my cheeks get rosy, I start smiling, and I feel lighter than air. It's the best. It's my favorite problem to have :)

Truly, how wonderful is it that I am not headed for week two of radiation in the morning. HOW WONDERFUL!!! ! ! I know my oncologist probably thinks I'm stupid, but I don't care. This is my body and my life. I will not give up on it, or take the easy, less effective solution. I will fight, I will laugh, I will live, I will not give up.

It's Official: Brain Cancer

There's an argument in the medical world about brain tumors. A stage 2 astrocytoma often isn't called, "brain cancer" - it's just referred to as a stage 2 brain tumor. It's not until stage 3, does the world refer to an astrocytoma as malignant. That has always baffled me. I've listened to my doctors over the past year and half, listening to the voice fluctuations, the terminology, waiting for changes, trying to make sense of their words. This past appointment on the 25th was eye opening. It was the first time my radiation oncologist spoke of my brain tumor as cancer. Before that, he only discussed the "tumor."

I have brain cancer. Yikes. That sounds a hell of a lot worse than a brain tumor. I was happier with the brain tumor label. But he's right, I don't exactly have a brain tumor anymore, they removed the tumor and now I just have cancer cells all over the back of my brain. Some in nuggets, others invisible to the scientific eye. Frightening stuff.

So here's what we learned at the appointment:

Average growth of my type of brain tumor is approximately 4mm a year. From April of this year to October (this appointment), my brain tumor grew by 4.5mm. That was a 4.5mm growth in six months. Bad deal.

My radiation oncologist wants to start radiation therapy right now. Here's the information he gave about the process:

It will be conformal radiation - they will radiate the whole tumor area. It will take 5-6 weeks. It's a treatment every day except Saturday and Sunday. To start, they will create a mesh mask that they will form to my face. They will then lay me onto a table and screw that mask to the table so that I can not move. If I move, even a tiny flinch, during treatment it will damage a whole new host of healthy brain cells, killing them. The first appointment will consist of 30-45 minutes of my face being screwed to a table while they measure things. Then the following appointments will be a one hour block. They will strap me down and screw my face in to the table, then there's the 10-15 minute radiation with the beams. It will be 3-4 high powered beams going through my entire head from all sides, converging at the back of my head where my tumor mass is located.

Side Effects:
     Short Term:
          Fatigue, Edema (accumulation of fluid in the brain), Seizures, Hair Loss (very likely permanent in the tumor area, but they'll know for sure after three weeks into the radiation), Nausea/Vomiting

     Long Term:
          Second Malignancy (a second or more tumor in another area of my brain), Damage to Normal Brain Tissue, Memory Loss, Face/Neck Skin Pigment Change, Sight Loss, Language Loss, Movement Loss, Neuro-Cognitive Loss....all of these long term effects are permanent damage that will not come back.

The kicker of this treatment is that it will not add any time to my life span. None. Basically, they will radiate the entire circumference of my old tumor, and add a buffer zone where they will kill healthy cells around the area to try and kill any invisible tumor cells in the outside area. The biggest concern in my mind is that my tumor was massive. Therefore, the buffer zone around my tumor area is quite large. That's a lot of damage to a lot of healthy cells.

The doctors say that the long term effects are permanent. They believe that radiation, right now, is the right choice because they believe that all of the short and long term effects will happen anyway as the tumor grows, so they believe that zapping it right now may slow some of the side effects. I guess they're expecting me to eventually have no vision, be paralyzed, have limited speech, limited cognitive abilities, and have to deal with a second or third, or however many more brain tumors in the rest of my head. This is crazy.

I keep thinking and thinking about this radiation and it just feels wrong. I just can't do it. I can't damage my brain, and my body like that. My radiation oncologist already doesn't like me because I refuse to get back on my anti-seizure medicine. I try to keep it light and tease him, but he is unimpressed by my chutzpa. I figure, it's MY BODY. It's MY BRAIN. It is NOT his brain. When I tell him I'm not going to do it right now, I know he will act like it's some grave mistake, but you know what - it's not his tumor. This is my life, and he can shove it. Sometimes I feel like he's drooling over my brain, and that's creepy. He has bought into the "standard of care" doing radiation, and I believe that there are other answers.

So, instead of jumping on the killing machine, I've started a new alternative therapy. Some of you might think I'm crazy, but that's ok. It is widely known that our FDA is hand in hand with pharmaceutical companies, and that they fund most research. That makes it incredibly hard to get valid alternative treatments recognized in the US. If there's no money in it, it's hard for hospitals and practitioners to jump on board. It's just our system.

I'm going to find my own way, right now using artemisinin (the main ingredient in anti-malarial drugs). If this doesn't work, I will try something else, maybe the Burzinski Clinic in Houston. I will not kill my body. I have been very fortunate to have a brain tumor fighter contact me to share their fight, and success of stopping, shrinking and then killing her brain tumor. Her husband has joined my fight to help me beat this. They've shared their MRI's, their techniques, their recipes, and their research. It's fantastic!


Here is what I'm doing:

• At breakfast or lunch I have 500mg of vitamin C, 400 units of vitamin E (with mixed tocopherols), and  a D3 vitamin
• I stop eating at 4:30pm
• Four to five hours after eating dinner, on an empty stomach, I take 2 capsules of Artemix and 4 capsules of Butyrex (I might end up adding a ferrous iron supplement too, but I need more information). 
• Between dinner and the pills, Danny and I take a quiet, relaxing walk, or visit, or watch a movie. Or I'll take a bath. I try to use that time to decompress. 

The premise of this treatment is that the artemix (consisting of artesunate, artemether, and artemisinin) binds to the highly iron filled cancer cells and kills them. 

Obviously, I'm not a doctor, and I'm not recommending that anyone do what I'm doing. If you're interested in the research let me know. I'll try and figure out how to add a page to my website and include all of the reasearch documents. I'm not going to include the MRI's, but the research alone should impress.

When I received the results of this past MRI I was in shock for two days. Then, I went into a deep depression. I would wake up and head downstairs to my favorite chair. I wouldn't get up until my bladder hurt so badly I thought it would explode. I couldn't get myself to the shower, I didn't want to eat, I didn't have the energy to talk to anyone or get on the internet. I was scared if I talked to friends I would just lose it and cry uncontrollably. So, I isolated myself. Things are looking up though. I'm happy to say that I'm on an upward swing. I was so scared, and it seemed so unreal, but the more resesarch I read about the artemisinin the more hopeful I become. It's an amazing cancer fighter for many, many types. Maybe, after all, I will cure this. Maybe I will be that 1%!

Evolution Of My Brain Tumor Diet

I have to clear things up...it's going to be a little bit of a tangent, but hang with me.

From the beginning of this diagnosis I have been searching, step by step, to overcome each obstacle. Once I realized, through research, that diet was linked to cancer (duh, how did I not see that), I started changing my eating habits. I reviewed the nutritional information on all of the packages in my life and started kicking out high fructose corn syrup. I stopped drinking diet pop, all energy drinks, and things with obvious chemicals.

Then, I found the articles about the Restricted Keto Cal diet slowing the growth of brain tumors and I learned about the restriction of carbohydrates (all types simple and complex). But the truth is that I can't sustain an extremely low carb diet. When I tried, I found myself clipping right along carbohydrate free, then I would attend a big party with friends and I'd be the girl taking a bite of all of the cupcakes. Every single one. You laugh, but that honestly happened. In my defense, everyone had eaten at least one (I think).

So, between my April MRI and my seizure (which occurred just before my scheduled June 19 MRI) I had quit on my diet. I gave the diet about 50% of my effort. I've never been one to eat fast food, I don't like chips very much, I love vegetables and healthy food, but I also adore artisan bread and glorious handcrafted cheeses. I cherish homemade sweets, honestly, I love them all, lemony, chewy, chocolaty, nutty, I'll take one of each if someone's offering. I took the time between MRIs to celebrate a freedom from my knowledge of food. I ran as much as I wanted, I ate as much as I needed to run successfully, at one point accomplishing over a 10 mile run with an 8ish minute mile. It was beautiful and I felt safe in my choices. I ate ice cream and didn't feel bad. I drank delicious local red wine, I laughed with friends, and felt like a completely normal 30 year old woman.

That all changed when we received the MRI scans at the radiation oncologist's office. I sincerely believed I wouldn't have tumor growth for years. I had decided that I would probably have at least 3-4 years before we would see that lousy white mass growing. I don't know how I picked those numbers, I guess I was just feeling so great. I was drunk with power over my future.

When I saw the MRI scans it was literally a stinging slap to my face. I can still feel it, the pain is continuously palpable. I won't let it defeat me, but it sure as hell makes it easier to be healthy. From the moment of the MRI I went on a logic kick. My body tells me that it wants whole foods. It wants veggies, lots of them, all colors all sizes, the weirder the better. My body wants fun fruits like deep purple berries and apples, it wants watermelon and cantaloupe, tropical fruits too but that's not Wenatchee's thing. My crazy little body wants salmon and chicken and sometimes steak. I'm not eating bread, but my body has definitely mentioned an IPA. Weird. As a treat at a friend's house, instead of biting off all the cupcakes (one more point, they were all organic ingredient cupcakes made from scratch...ok, I'm rationalizing), my goal is to eat some cheese or have a glass or two of wine. I'm too scared to do the measly 50%, I have to do at least 90%. This transition is still hard, even though I've had the fear slapped into me. In fact, I can not have anything off my diet in the house. I can't say 'no' to myself. Zero self control. It helps that I can't drive and I've cut my social engagements by at least 75%. As an odd note, I've already lost 8lbs and I'm eating more than ever. I hadn't seen 146 in awhile.

Thanks to everyone around me. It's nice to have people that are passionate to help me succeed. My family and friends help provide fantastic foods when I get the chance to visit. If I can slow this tumor down by eating specific foods, I would love to sass my family and friends for decades to come! I'm sure I'll botch my diet a few times before the next MRI, but my goal is to surprise the doctors and have them looking in awe at a shrinking tumor. I've heard crazy stories about such things, but I also know that if there was a cure all that would shrink brain tumors, all of us patients would mortgage everything in reach to get it. As far as I've seen, there is no easy answer. It's food, it's exercise, it's genes and it's crazy stuff like cell phones (?), and not in that particular order. Who knows. For now, I'll listen to my body and see what happens. Cheers to sassing you all for decades to come!

An Extra Month

Last Thursday night, I panicked at the date, the 12th. I mistakenly thought that I only had one month before my MRI. For about an hour I thought things were moving too quickly, that I was losing time, and my freedom was coming to an end. The fear of impending radiation overwhelmed me.

I don't know how I figured out my error, but once I did, I let out a sigh of relief. The first thing I did, was go for a run. There's nothing more freeing than propelling yourself through nature. Your movement is on your terms.

Luckily, I now feel like I have an extra month! Funny how that works. The extra month was never taken away from me, only in my mind. What a powerful realization.

Mini Stewie

Two days ago, as you can imagine, I was thrilled to find a Mini Stewie in my garden (Stewie is about double the size. I don't know if it shows between the photos from the two posts). Here's a few photos. As you can see, I went a little camera happy.

Is he the cutest thing in the whole world?!?! Well. He was. Sadly, I found him dead in my garden when I got home from the speech therapist yesterday. We believe the neighbor's dog attacked him. Mini Stewie then ran through the fence and into my garden, where he died.

The worst part is that I was so excited when we got home that I was looking for Mini Stewie and I found his dead body. I loved him. It's amazing how much you can love something instantly and become attached in less than 24 hours. I was so devastated yesterday that I couldn't even bring myself to get on the computer.

Yesterday, while I was mourning for Mini Stewie it occurred to me that just because you love something, like the bunny, doesn't mean that it will live. I hoped that the bunny would be safe around the neighborhood, and grow old to have Micro Mini Stewies. Just as I was hoping to enjoy Mini Stewie for a long time, I'm realizing that my whole life is going to exist on hope. I hope in two months I'll have a clean MRI (and then the next MRI after that, and that after that). I hope that I won't need radiation and chemo therapy. I hope that the rest of my existing tumor won't grow fast. I hope that I will beat the odds for the seven year average. I hope that I never have to spend another week in the ICU. I hope. I hope. I hope. I guess that this is my life.

I realize that wasting time worrying about the "what if's" in my life is just what it is, wasting valuable time, but at the same time I'm human. Of course there will be times when I'm going to worry. Maybe I'm just looking at the word "hope" with the wrong connotation. Maybe I'm starting to associate hope with fear. I don't know. I just feel so vulnerable.