Hard Work & Healthy Distractions

Danny is going to kill me. I was supposed to tell my friends at the retirement home that I need to take a couple of weeks off from volunteering. Dan's worried that I'm overdoing it, and he wants me to focus on getting healthy. He believes that I need to focus solely on my new protocol, but while I was painting Margaret, Elizabeth, and Ruth's nails, I realized I just can't walk away. These wonderful women are so fun to be around. They keep me laughing, or at other times, we're just quiet. Volunteering feels like the only time that I'm not focusing on just me. It's wonderful helping someone with their walker, or opening a door. I love serving them juice, or painting their nails. They give me a reason to get out of the house every Tuesday morning, whether it's sunny or pouring rain. I'm afraid, that if I can't volunteer, I'll get depressed. I'm pretty terrified these days, and I need distractions. I need to help others. I need my life to not be just about me.

Yesterday was my first high dose vitamin C treatment. On Thursday, I'll return for IV curcumin and resveratrol. I'm going to be alternating those two IVs twice a week for quite some time. Unfortunately, the treatments are not covered by insurance. So, thank you to everyone who has donated money to help heal me! Thank you to Matt & AJ for Movember For Jess, and to those who have donated to the Islanders Bank account in Friday Harbor. Of course, thank you for the girls who created, and maintained the Hope for Jess website of my art work. Thank you to everyone who donated to any of the above fundraisers. You guys are AWESOME!! When it comes to medical care, hospitals are wonderful about payment plans, if need be, but when it comes to "alternative" medicine, you have to pay upfront. So, the money that has been donated to me in the past, has been incredibly helpful. I've used some to pay current medical bills, but then I got smart, and realized I needed to bank the donations for any kind of uncovered care. Because of your amazing donations, I'm getting full body, synergistic care that is not only healing my body, but also, directly targeting my cancer cells with a barrage of weapons. So, truly, thank you from the bottom of my heart!

Apparently, the high dose vitamin C, curcumin, and resveratrol IVs are synergistic with my low doses of artemisinin. They should all work together, along with my diet and supplements which have grown exponentially (shark liver oil, borage seed oil, fish oil, maitake, shiitake, lions mane, aloe vera jelly, boswellia, CoQ10, EGCG, D3 - I'm probably forgetting a couple) - and last but not least, it should all work with the sulforaphane chemo drink. I haven't been able to get started on the chemo drink, yet, unfortunately. I've ordered a yogurt maker, which should cook my chemo drink at exactly 100-110 degrees for several hours. It even has little cups, that sit on a tray. I'm pretty excited about it - the little cups on the tray will make it so that I can do a week's worth of drinks in one batch. Woop woop!! The shipment should arrive by the end of the week. Once that arrives, Hermie is going to FREAK. I'm pumped!!

Well.....I, mean, I'm pumped, and completely terrified. It's tough to keep my chin up and plow through everything, but I know that giving up would be ridiculous. I need to stay calm, ignore statistics about my cancer and effectiveness of the various treatments (30% success rate for one, 20% for another, etc.). I have to believe that these things that I'm doing are going to work together and heal my body. To put this much effort into living is risky because I would hate to be disappointed, but, of course, that's a horrible attitude to have. It's just not acceptable. That's not a winner's attitude. Maybe I need to do more deep breathing or something. Part of it could be that I feel disjointed from Hermie lately, I can't quite tell what's happening up there. I worry that he's morphing, which does tend to happen. Cancer cells don't like to die, and when they come into contact with things that threaten their livelihood, they like to adjust, change their dynamics and progress, so that the treatments are rendered ineffective. To outsmart the Hermies of this world, we have to keep the full frontal attack. It's exhausting, but it's the only way to win.

Navigating, Always Navigating

On Friday, I was walking between doctor appointments and passed a bush of wild-ish roses. The smell was intoxicating. I find that since I don't drive, I notice so many beautiful things each day, things that I wouldn't have noticed if I was whizzing by in my car. It's a much slower pace of life, and it's a gift. 

I'm completely overwhelmed lately. I have a wonderful new primary care doctor, and a fabulous naturopath, but I'm still reeling from all of the information and reality of my new treatments. Suddenly, my cancer seems painfully undeniable. I've been galevanting around Green Lake, taking care of myself with the low doses of artemisinin and diet, and I thought that I was really fighting Herman, but compared to the other cancer patients that I'm meeting, there's so much more that I could do. That I have to do, and, all of a sudden I feel catipulted into the cancer world. Before, I realize, I had one foot in and one foot out.

There are so many treatment options, and I need to exhaust them all, all at the same time. In about an hour I'll jog to a bus stop. By jogging a couple of miles, I'll avoid having to take two more busses. I'll head to my naturopath's office to start the first high dose vitamin C IV. On Friday they had to draw blood to make sure that my body could handle all the things that they'll be injecting. I'm currently downing an intense sprout smoothie which should work synergistically with the IV treatment. It's all about timing and combining, so I'm adding various things to increase the effectiveness. It's enough to make a person crazy.

I've just finished ordering some various equipment to create our amazing chemo drink, and now I'm just trying to figure out what to do next. We have to start growing a sprout farm, literally, in our house because it takes several trays to create just one morning drink, and I'm supposed to drink it every day. And that's just the sprout drink, in the evening it's time for the chemo drink. Between those two creations, I'll be going back and fourth with the IVs (curcumin, vitamin C, resveratrol), supplements, and possibly the artemisinin (it should be synergistic according to my naturopath). Oh ya, and the fun part, I need to get a port surgically implanted into my chest for all of the IV treatments.

I'm trying to be cool, but I don't even know how to organize all of my treatments, the growing of the sprouts, the ordering of pills, the busses to treatments, the management of our household, aaaaaaaahhhhh, I'm going to spontaneously combust before I've even begun. 

Poor Little Hermie

Jules and I walked the lake last night. I'm so lucky to have all these girls (Erin, Meagan, Meghan & Jules) that take different shifts to help keep me in the game :)

Today, I'm headed to a new internist appointment, trying to find a better go-to doctor for all over health. Then, this afternoon, I'm headed for my first high dose IV of vitamin C! Lets hope they can find my vein easily!!! I'm excited and nervous. I'm seriously traversing the metro today...can't wait for my new adventures.

As for the vitamin C, if you try and ingest it, your body excretes most of it, to get the massive levels, you have to get it injected. By injecting it, you bypass the stomach, the lower intestine, and liver, and the vitamin goes directly into your blood stream allowing it to travel all throughout your body. So, the IV helps bioavailability. This whole treatment is amazing. It's a great addition to any radiation, or chemotherapy. Vitamin C is a molecule off of glucose, which is what cancer and tumors live off. So, the tumors suck up the vitamin C, thinking it's delicious sugar, but in truth it's an antioxidant. In the high doses, vitamin C generates large amounts of hydrogen peroxide which is a potent free radical. A normal cell has catalase to neutralize the free radicals and protect them, but cancers DON'T. So, the high levels of vitamin C weaken the cancer cells. Also, the hydrogen peroxide aids in the artemisinin. That's why I'm supposed to walk for two hours before I take my pills every night, exercise and deep breathing help oxygenate my brain generating more hydrogen peroxide. So, literally, today with my IV, and my walking, and then the artemisinin, poor little Hermie is going to get quite a beating. It's exciting, and yet somehow I feel a little bad for him. He's done so much for me, allowed me to learn so much, but I guess I can just remember him fondly and take his lessons with me wherever I go. I guess, that's a nice compromise.

Hope all that vitamin C stuff makes sense, I'm in a bit of a hurry. If it's confusing, I can explain more later!

Armouring UP

This photo makes me laugh. I was trying to hand over my phone to Danny so that he could take a photo of Mount Rainier. It sums up my life at this point, completely sideways.

I have been exhausted, spinning around in circles, trying to take care of my body, rallying the troops against Hermie. I'm in a regrouping mode. Last week, I realized through further research, that I've been incorrectly doing the whole artemisinin protocol. Apparently, cancer cells do most of their reproduction during the night. The highest cell division between midnight and 1:00 am. My researcher who told me to stop eating after dinner, and walk in the evenings for a few hours before pills, never said a time to stop eating. He just said, refrain from eating for 3-4 hours after dinner, then take your pills and go to bed. So, being the old soul that I am. I decided to stop eating by 4:30 at the latest so that I could get to bed early. I like to be tucked into bed by 8:30 pm. Well, guess what, I've been sabotaging myself. The point of this low dose is to ingest the pills between 10:00 - 11:00 pm so that the artemisinin is at its most effective state during the replication of the cells (12:00-1:00 pm) - that's when the cancer cells are most vulnerable. The artemisinin has a half life of about 3-4 hours, so there was still SOME artemisinin getting through, but the doses would be incredibly low and quickly tapering off. Damn it! I'm always effing up things. Usually, when it's not life threatening stuff (like when I put my foot in my mouth), it's hilarious. But in times like this, I just have to roll my eyes, and cringe. I guess it's fitting that my mother's nickname for me is, our little Miss Brooks, from the old TV show. Miss Brooks was always "accidentally" getting into trouble, biting off more than she could chew - or trying to get one outcome and instead having it backfire.

So, my life is upside down ever since last Thursday when we realized that my early-to-bed routine was completely killing the successfulness of the artemisinin. It's nice to know that we can tweak things to make it more effective, but now, I'm completely exhausted. I've been walking for two hours from 8:00 - 10:00 pm every night with Danny, or with girl friends, and then I take my pills and head to bed, finally tucking in at about 11:00 pm.

My plan is to continue this schedule until next week when I can start the chemo drink. I want to keep fighting every single day, giving Hermie no breaks. My sleep is definitely hurting, but I know that I can push through for one more week. Once I get off my sleep pattern it's even harder to get rested, I can't seem to nap or sleep in, but I think this is worth it. I'm giving him a full frontal attack! Down with Hermie!!

I'm still on my whole foods diet, and I've been supplementing with borage seed oil (proven to attack astrocytomas), shark liver oil (immune stimulant), fish oil (helps heal the myelin sheath of healthy cells, increasing neurotransmission), maitake mushroom (proven to attack astrocytomas), shiitake mushroom (immune stimulant), lions mane (immune stimulant), vitamin C 500mg (antioxidant), and Vitamin E 400 IU (antioxidant). All supplements are taken in the morning, and then I'm taking the low doses of artemisinin late at night. On a side note, did you know that tumors can not use fat for fuel? That doesn't mean that I should go out and eat a chunk of lard, but it does make me happy to think about my fat supplements (borage seed, shark liver, fish, flax seed, etc.), all of those healthy fats are helping my body regenerate healthy cells, stimulate my immune system, and rejuvenating my body. That's exciting!!

All in all, the diet is working just fine. I'm happy with what I'm eating. It's lots of veggies, some lean meats like seafood, and then little bits of fruits, nuts, healthy fats and some whole grains. When I have a sweet tooth, I slice up a fuji and powder it with obscene amounts of cinnamon (which helps stabilize blood glucose levels). I'm enjoying my time before the chemo drink because I know that it's going to effect my taste buds and appetite. For now, I just get to enjoy my happy, healthy state. I'm mentally preparing for serious battle, putting on all of the armour (exercise, diet, artemisinin, supplements, breathing, etc.), so that I can come out a victorious warrior during the MRI on July 19th.

Too Large? Too Dense?

Man. What a week. I've been a busy bee. Happy second anniversary to us...for the brain surgeries, that is! April 27th and 29th (which also happens to be my mom's birthday - yay for mom!). Last Friday, I jogged over to the UW hospital to retrieve my most recent records from my MRI. I always get copies of the actual scan, and then I also get the radiology report which shows the analysis by the radiologist experts. It's important to get copies of the reports because they are constantly contradicting my nurses and oncologist. It's incredibly confusing.

For example, at the main appointment after my MRI, my oncologist haphazardly pulled out measuring instruments to compare my current MRI on April 19th, to the tumor scan in January, during which he showed a couple of millimeters of growth in a couple of directions, telling us the tumor was progressing. But, according to the current radiology report, my tumor measured the same exact size of 10 mm x16 mm x 11 mm.

What gives? Are the nurses and oncologists uneducated in accurate MRI measuring techniques? If so, maybe they shouldn't be interpreting the results in our meetings. Maybe they shouldn't be inferring results and determining treatment until they receive the official radiology report. According to the current report, there is slight growth, however the measurements have not changed. I'm not sure why they would say that there has been slight growth, and yet the measurements have not changed. We were so confused that my parents contacted the hospital so that we could talk to a MRI reading specialist. For the record, this is not a typical or usual occurrence, and it is not encouraged - but my family is persistent. I think most people don't analyze their MRIs quite as deeply as we do, but I think people should. On Thursday morning we'll be meeting with a fellow who constantly reads brain MRI's. We're hoping that he can explain why the measurements have remained exact over the past six months, over three MRIs, and yet they're saying there's growth. We're not arguing because we can see the slight changes, but we're confused as to why the measurements haven't been adjusted.

I am baffled by the contradicting interpretation of the measurements of my brain tumor. Is it really that subjective? It doesn't seem right. They're trying to tell me to do radiation and fry my brain, yet even the doctors and specialist within the hospital aren't on the same page of what we're dealing with.

It is imperative for patients to get their medical records and review on their own. Not only before you enter a treatment, but also because doctors will say there's "no new growth" when that actually means, "not much" or a few millimeters. That's what was happening to me before October of 2011, and that is a serious problem. Let me tell you why: If your tumor is growing, but you aren't aware, you don't know that you should be looking into treatments. According to my bioengineering artemisinin guru researcher friend, there is a point when a brain tumor can be too large or too dense to treat it safely with artemisinin. When he told me that, I almost vomited (he wouldn't have known - we only talk over email). It never occurred to me that the artemisinin might not work. It all started unravelling when we noticed that the three other areas of concern continue to shrink, and yet Hermie grew just a bit. I asked the guru, one of the top artemisinin researchers in the world, and he said that if the area isn't shrinking like the others, it might be too large or too dense to eradicate with artemisinin. AAAAAAAAAAHHHH! Seriously? That never, ever occurred to my simple, hopeful mind. I thought I just needed to find the correct dosing.

So, what have I learned? Well, if I would have been reviewing my MRIs ever since my surgeries, I would have seen the changes in growth, and I would have been able to start the artemisinin treatment to treat my brain cancer. EEK. AAAAHHHH. I'm so frustrated with myself. I realize that it was an innocent mistake, that I didn't realize how much I needed to be on top of my care, but that doesn't fix the problem of possibly missing my window. We won't know for sure until the next MRI on July 19th. I'm not going to lie, the idea of this treatment not working is absolutely terrifying. I'm not willing to give up though, and, deep in my heart I truly believe that it WILL work, but jeez. This is scary.

To change the subject, here's a photo from the weekend that should make you laugh. Danny, Eric (Dan's brother), Christel (Eric's girlfriend), and I went to the Huskies spring football game, and we came upon photos of the two players of the jerseys that Dan and I wear at Seahawks games. How crazy is that? Just another sign showing that we're a match made in heaven.

Goin' for "Stable"

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

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

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

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

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

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

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

Eating Away at My Core

My adorable little nephew

Well, I tried the higher doses of artemisinin, and it appears as if my body didn't prefer it. According to research, there's quite an individual variability of effectiveness. So, last night I started back on the low doses of Artemix. I'm back to doing the same protocol from Oct - Jan. I'm back in contact with the lead researcher at the UW who knows all there is to know about the artemisinin derivatives. He's originally from India where he was a medical doctor, but he moved to the states and earned a PhD, and he now researches artemisinin. He is the most kind doctor and researcher, possibly in the world. I emailed him and discussed what happened with this latest protocol and he expanded on the reasons why the low doses work so well. There's a 24 hour cycle where you eat antioxidants in the morning and at lunch, then refrain and stop eating in the early evening. You then take the artemisinin four hours after dinner with a cup of whole milk. Then you start back over in the morning with antioxidants. By utilizing the 24 hour cycle, you keep your body healthy and it cleans up any residual damaged cells, then when you take artemisinin on an empty stomach, the body creates more free radicals which allow the artemisinin to attack the cancer cells. The artemisinin works its' magic while you sleep and when you wake up, it's time to clean up all of the mess. I'm excited to be back on the low doses, it's so much easier.

It's crazy, but I never liked the high doses. It made my innards hurt. I'm disappointed that Herman grew, but I'm not surprised. I had been noticing some mental deficits, nothing too serious, but things were different up there. I didn't want to jump to conclusions because there's just no point in freaking out, but when I saw the further infiltration of Herm on the MRI, it all made sense. The growth is in my speech and language area, and although I feel like I'm progressively better at expressing myself with the written word, the deficits are when I'm speaking aloud, or processing speech. Tricky stuff. I still don't think anyone else would notice, but I notice and that's creepy enough.

The past twenty-four hours have been pretty tough. My family all returned to Friday Harbor and Wenatchee, and that's when the whole thing hit home. Here we go again, another three months of trying to stop the growth of Herman and hopefully, someday, actually see him shrink. Yesterday, as I was laying in bed trying to nap, I wondered if I was going to be able to keep up the fight. This is exhausting. Sometimes I feel like giving up. I know that I won't, but it's so tough. Luckily, my friends Meghan and Nicole invited me to run the lake. If not for that, I probably would have just laid in bed. I just need to keep one foot in front of the other, and do what I can. At least today I get to visit my friends at the retirement home, they always make me feel better and it's a great excuse to get up and out of the house.

It's so foreign to have a blob growing in my brain. And to feel it, recognizing that it's there and it's eating into who I am, deep in my core, my thoughts and processing, it's absolutely fascinating, and horrible, and terrifying.

Chubby Hermie

Other than the growth of Hermie, the meeting went relatively well. The oncologist listened to our protocol, but as he was nodding, we realized that our protocol doesn't matter. I could have inserted the name of any treatment and he wouldn't have cared. He had already looked at my scans and determined that little Herman had grown. He didn't care about the three other areas which had visibly shrunk. We are incredibly bummed that Herm grew, but the tumor cells are less densely populated, and we're looking into two new institutions for further review. We're also going to contact the researcher who tackles artemisinin to see if he will comment on the scans. We're hoping that he will expand on the typical growth patterns of tumors treated with artemisinin. In reviewing the subject, my family and I recall the possibility of the tumor expanding before it gets smaller. Here's a couple of photos for your review. 

Oct 2011 - Jan 2012 - April 2012

After the MRI, but before the meeting with my oncologist, I went to the records department and had a tech burn a disk of my MRI. We brought all of my previous disks from all of my other MRI's and we reviewed them on my father's laptop so that we wouldn't be blindsided during the appointment. It also makes it easier to figure out any questions we might have. The doctor has no idea that we did that. He never knew that we had already reviewed the scan. I don't think it matters though - he doesn't have to know EVERYTHING.

April 2011 - Oct 2011 - Jan 2012 - April 2012

After the appointment, we mailed off a copy of the scan to our friends who have already beat their cancer, then we headed to my parent's hotel. We pulled up all of the scans, and analyzed to our heart's content. We looked at them with the lights on, with the lights off, from a side angle, from above and below. We zoomed in and we zoomed out. It's important to really go through this stuff with a fine toothed comb. Our oncologist is very busy, he doesn't have the time (only 30 minutes) to review everything, so recently we started conducting our own reviews at home.

My oncologist is not impressed with my protocol, he feels that I still need to start doing radiation. He said that the growth was minimal, but it is still growth. He doesn't care that in the past six months there has been barely any growth, he's concerned about the past year of scans. I understand what he says, but at the same time, all we care about is the past six months - that's the time frame of the artemisinin. I told my oncologist that I'm not ready to give up, that I'm going to do three more months of artemisinin.

Today was exhausting and I need to go relax. We just got home and I need to put my feet up. It's a bummer that Hermie grew, but at least his friends are shrinking. All in all, at least Herms isn't growing exponentially. It could be a lot worse, and I'm grateful. I'm sad that he grew, but I know that this isn't over!

More Micronutrients

Thank you so much for the beet advice! I just made a new juice, a different recipe, and peeling the beet fixed the problem! No grit. So far I'm on my second glass and I don't have any of the dirt. What a relief! Woo hoo!! I'm totally getting nuts with the juicing. Yesterday I made three different batches each as a new recipe. Since I was on the high doses of artemisinin three days out of every week and I wasn't supposed to eat antioxidants, these juices and my blended drinks are H.E.A.V.E.N. to my body.

This recipe is amazing. I'm being good and following recipes since I have such a horrible track record. I figure I'll play around and learn all of the suggested pairings, then when I really get the hang of this I will be able to figure out fun variations of my own. Below is the recipe from today.

Beet Detoxifier
1 Peeled Beet (Include greens & stalks)
4 Stalks Celery
4 Carrots
1 Inch Ginger
1 Lime
1 Green Apple

For breakfast I created a new smoothie, and it was delicious!

Breakfast Smoothie
1 Small Head of Napa Cabbage
1 Large Banana
1 Tablespoon of Orange Flavored Fish Oil

Don't confuse the smoothies with juices. The smoothies you end up eating the entire piece of produce, unlike the juice where the pulp and fiber are removed. I like to vary between the two options. It's important for me to get a lot of the cabbage, kale, watercress, etc. But, at the same time, it's really hard to ingest a whole blender of liquid. That's why it's nice to have a micronutrient dense juice too. I've read that the juicing allows your body to absorb all of the enzymes quickly since the fiber is hard for the body to digest. Removing the fiber speeds up the absorption.

This juicing kick is such a great distraction. It's perfect timing in fact. I have less than two weeks before my MRI and I'm nervous as hell. We stopped the growth of Hermie from October to January, but now I've been on a whole new protocol. Instead of doing the trio of sweet wormwood compounds, I've mainly been taking the artemether which is the fella that crosses the blood brain barrier. We have a friend who used this protocol and cleared up her brain tumor (same type as mine), but it's still scary when you try new things. I'm mostly scared because I didn't eat as strictly as I did for the previous MRI period. It's hard not to overanalyze, and that's why I need distractions.

This morning, I woke and met up with my friend Jessaca and her baby girl. We walked over to Green Lake, and wandered to the playground. It was wonderful to see them! I miss my Wenatchee girls. After that I took a nap until 2:30 pm. I sleep a lot, but while I'm up, I need things to do to keep my mind sane. My life consists of sleeping, juicing, blending, laundry, running, showering, etc. Just the basics - but I like it that way. If I do too much I get run down, and then I get sick. I've come to the point where I'm pretty clear where my energy boundaries are, even though sometimes I still push it and wear my body out. It's always worth it though :)

Last night Meghan and I ran Green Lake, then swung into my house so that I could make her my favorite green apple, carrot, and ginger juice. She was pretty impressed, and laughed hysterically, when she saw our fridge. To be honest, it's been a long time since I've seen anyone else's fridge, so I didn't really know what the big deal was. She grabbed my phone though, to take a picture. I wish I could see what other people's fridges look like. There must be some delicious looking food or something? I still like whole real food, like normal meals, but I really enjoy cleansing my body with veggies and fruit. My body feels so much better. Especially the green drinks. Tonight, Danny has class so I'm on my own for dinner. I think I'll tackle a new green juice. I'm excited about it! In the meantime, I still haven't ran the lake yet today so I'd better get to it. I'm not going to lie, it's beautiful out and I wish I was sitting at Duke's on the patio with a large Hefeweizen and a side of their delicious cabbage salad, but oh well. Maybe later in the week.....who knows.

Pure Exhaustion

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

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

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

Just Doin' His Job

I'm on day two of sprout growing. I drained the seeds and tomorrow, I expect to see just a few sprout faces poking out.

I can't believe I only have three weeks before the MRI. This is such a huge time that happens just four times a year. I've been much more lax on the diet, soon we'll find out if my wayward ways have fed little Hermie. I keep reminding myself, each time I get tense, that it has been important for me to be able to have pizza, ice cream, red wine, sourdough bread, and other fun treats in order to test the limits. I need to see whether it's important to be perfect with my diet, or if just maybe, it's okay to eat some fun non-nutritious foods. It's scary, of course, but man has it been fun :) and delicious.

Tonight is supposed to be my final high dose artemisinin night until after the MRI, but I've decided to extend one more day and up the dosage to counteract the decrease of absorption that goes with the high doses. I'm doing a final kick in the pants to poor little Hermie. He's just been dancing around in there, gobbling up whatever I've been giving him, and I don't think he's going to see it coming. Poor guy...I almost feel bad for him. He's just trying to survive in a tumor eating human world. Just doing his job in life, which of course, is death. Can't really blame him for trying. Adios little Hermie! I wish I could say that it isn't personal, but I'd by lying.

Not Mutually Exclusive

Good morning world. I'm feeling wonderful after two consecutive days of napping. Yesterday I even napped twice. Today, apparently, I was still pretty pooped, I slept in until 10:00 am. That is a straight up miracle since I had been waking up in the six o'clock hour all week.

Danny and I have been hitting the weights pretty hard, keeping up with the running, and it's causing a delicious exhaustion of my body. It's a great feeling. It makes me feel so alive! Last Wednesday I did 90 squats with the weight bar bearing 5 lbs on each side. I don't know exactly how heavy that is, but it felt punishing. I probably sound weird, but it's thrilling to push my body. While exercising, I often flash back to the days in the ICU, and then the weeks, and months when I couldn't run or lift weights.

At the time when you're unable to push yourself for fears of seizures, or just flat out pressure on your brain, you feel like you may never get better, that you might not recover. Each time I get to push myself, each time I sprint in the final strides around Green Lake, I end up panting with deep breaths, elated, almost giddy at my abilities. I tell myself, as I wind down into a slow walk, "You just kicked ass!" There's something about really pushing your limits, and I think it's okay to fluff you own feathers. When you get off your butt and challenge your body, you should be proud! There's no shame in that.

It's Monday, so I'm back on my high doses of pills. Today, I thought I'd share exactly the brands that I use, and exactly the what the doses look like. It's 4 pills from each bottle, taken with a cup of whole organic milk. It's important to take the pills with whole milk because the pills are fat soluble.

I am writing this blog to share my experiences throughout my brain cancer journey, including my various treatments. My hope is to have step by step information to share with others who may find themselves in a similar position. I hope my new friend won't mind, but I'm very excited to share that I was contacted by the brother of a gentleman fighting a glioblastoma. He found my blog while trying to exhaust alternative treatments as he has already endured a brain surgery, radiation, chemotherapy, a second brain surgery and the placement of chemo wafers in the tumor cavity. His brother is a total badass cancer fighter. I shared with him more information about the past several months and what I've been doing. I realize that my blog isn't exactly easy to navigate, so I was ecstatic that he emailed with questions! I am so hopeful that my information might be helpful. This is my dream, to be contacted and help share what I've learned. It's FANTASTIC. I truly believe that we can beat these cancers, it's just a matter of varying the doses as we find what works best, and each body is different.

This treatment directly targets cancer cells while leaving healthy cells intact and unharmed. It's amazing! It's everything we've ever looked for, it's everything we've been dreaming of. To anyone out there, please, never hesitate to contact me with questions. I want to help. I want to share everything that I know. Yes, diet is very important, as is with exercise, and reducing stress. But, diet and life changes alone will not cure you of brain cancer. That's what I believe anyway, and statistics seem to concur. We have to be proactive in our treatment. I mean, think about it, if this treatment of mine doesn't cause any damage to healthy cells, why not try it? What do you have to lose? We've already shown that it worked from Oct - Jan between my MRI scans. No. New. Growth. None. Zero. On slides from the two MRI scans, comparing the exact slices, little Hermie appears to maybe even have shrunk just a tid. He definitely lessened in intensity. It's scary to go outside the bounds of our doctor's advice, but it's already been stated by the same doctors that they can't cure brain cancer. So, essentially, they don't have a solution for me. I'm on my own, except for my teammates in the artemisinin cancer fighting world. Thank God for them. I've always been a sucker for answers, and I have never been good at following statements like, "Because I said so." That just doesn't work for me. Sorry, doctors, you'll have to give me a better reason not to try other options.

I realize the doctors are just trying to be cautious and they don't want me to have any other complications, but when there are so few (effectively none) treatments that cure brain cancer, I would be a fool to follow their advice and avoid alternative options. Just because there isn't a clinical trial proving the validity of artemisinin, doesn't mean it isn't effective. The two are not mutually exclusive.

Her Charm

Another beautiful walk along Green Lake...

Documenting my love affair with moss

Sleeping Lovers

Last night, I was a bad girl. I can't be good all the time. It's in my DNA, just ask my grandma. Trust me, she'll know what I'm talking about. She's a little naughtier than me, and boy is it her charm. There is no one like her! Sometimes I need to turn on some soothing music, uncork a bottle of pino, pour a glass, take a deep breath, close my eyes and tell myself that everything will be okay. Last night I listened to Lana Del Ray. If you've never heard her sing, she's mesmerizing.

I keep chugging along, but I have little blurps of exhaustion. I'm in a blurp. I think it's related to the fact that I can't run. One more day. Ugh. One more day, except I stretched in my sleep, which quickly woke me up in a rip of pain. A little tear of the stitches which were healing so well. Damn. Tomorrow I'll gauge whether or not I should run. I don't want to get the incision infected. That would be disgusting!

If I can't run, I start to fall apart. I get lethargic, my appetite grows erratic, my mood dives, and I start to feel sad for no reason. It's embarrassing.

Today I started my high doses again. I'm doing a 4-6, four days of high doses twice a day and then six days off. On the dosing days, I can only eat between 11:00 am-ish to 4:00 pm-ish. No smoothies, the antioxidants clean out the free radicals that need to carry the artemisinin into the cancer cells. My fare during dosing days is quite simple. That's why I need to run, I need to feel energized. Green smoothies and running are what keep my blood flowing and happy.

Oh well. This will not last forever. I am lucky to have this opportunity to conquer my brain cancer. Most who have come before me have not been so fortunate. That's what I have to keep remembering. I'm a lucky one.

Smart Bomb

Good Morning! I just finished making my breakfast drink. Guess what came in the post yesterday......three guesses.....just kidding! It's my Vitamix!! I made a smoothie yesterday with two bushels of upland cress, and a banana. It was pretty freaking spicy, but upland cress, even in dietary amounts helps stop angiogenesis to tumors. Angiogenesis is the generation of new blood vessels, and blood is what carries the food to the tumors. No blood - no food - no tumor. It's the PEITC in upland cress that does the magic. If you can eat foods high in PEITC, your body will love you!

Just a little bit ago, I made a new smoothie - it's so much fun playing with this new toy. The Vitamix came with two cook books (Ani's Raw Food Essentials, and Live Fresh) - both vegan & raw. The recipes look amazing, and I'm so excited to walk over to PCC to pick up ingredients for my first recipe! This morning, though, I figured I'd just make due with what's in my fridge and cabinets. So here's what I did:

One banana
Three large leaves of purple kale (deveined)
Half the blender full of baby spinach
Two to three cups of water (depending on the thickness you desire)

1 Tablespoon of chia seeds, soaked overnight

An overflowing tablespoon of Barlean's Greens

My favorite smoothie glass is Dan's Guinness cup :)
The blending of this machine is unreal.
My old blender would leave chunks of banana, it was so dull.
Not this guy, the drink was so smooth - DELICIOUS. 

For my taste, this smoothie was a bit too sweet. Barlean's Greens is very sweet, and earthy. I should have omitted the spinach and just filled the blender with kale, that would have made it more bitter and balanced it out, I think. Still good though - I'm just not used to super sweet stuff.

While I was blending, I couldn't help but dance with Bingie. Life is so great! That article on www.mygreenlake.com was so wonderful, and fun. I'm so lucky to live in Green Lake, and I'm so grateful for the fact that the brain tumor has not grown in the past three months. I truly believe, that if I work hard, and take this seriously, along with my artemisinin, I can heal my body, and say good-bye to Herman. People still don't totally know the most effective dosing, or how often to administer, but researchers are getting closer and closer. Artemisinin is a natural chemotherapeutic that doesn't have side effects (unless you take an absurdly crazy accidental dosage). There are so many stories of artemisinin healing cancers - all cancers. I was forwarded a video from YouTube overnight from our buddy, and it confirms and summarizes exactly what I've been reading with research. It's so inspiring! I'm pasting it below so you can watch it if you choose.

I realize that what I'm doing to try and heal my body is considered "alternative." It's outside mainstream western medicine, and often in our society seen as "quack". The standard of care is surgery, radiation, chemo, another surgery, etc.. But, in my situation I have nothing to lose. I've done the surgery, and radiation wasn't going to extend my life so I don't see why I would fry my brain just in the hopes to slow the onset of symptoms. I've talked to my doctors, both my radiation oncologist, his nurse, a neuro oncologist, his nurse, and even a few residents, but no one seems to be able to come up with a good argument to sell me on this whole radiation thing. I'm not saying I'll never do it (it's dangerous to say never), but at this point it doesn't make sense.

For now I'm going to focus on eating healthy, healing myself cell by cell, happy thought by happy thought, run by run, laugh by laugh, hug by hug, smoothie by smoothie. If you have cancer and you're reading this blog, please know that you're worth the fight. People want you to live. Don't listen to the people that say you're going to die. Don't listen to yourself when you think you'll die. Learn from others who have outlived their diagnosis - they're holding keys that can unlock your survival. Don't give up!

Here's a photo of the lake from yesterday. It was stunningly gorgeous outside, a crisp 50 degrees with a little breeze. I walked and walked and walked, which felt amazing since I can't run yet. The fresh air, and happy faces made me smile. I've decided my favorite thing to see is people walking hand in hand. What a simple and beautiful act. It reminds me how connected we are.

"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!!

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!!

New Doctor

I'm so excited! I just made an appointment with a new doctor, a primary physician. She's at Seattle Healing Arts, and I'm thrilled to be a patient there. Look at all of the different therapies!

More About Our Therapies

Seattle Healing Arts practitioners offer a wide range of therapies for healing body, mind, and spirit, including: Acupuncture Allergy Therapy Chiropractic Energy Healing Family Medicine Herbal Medicine Homeopathy Hypnotherapy Internal Medicine Massage Therapy Midwifery Naturopathic Medicine Neurofeedback & Biofeedback Neuropsychiatry Nutrition Physical Therapy Podiatry Psychotherapy | Counseling Skin Care Sound Healing Spinal Manipulation Visceral Manipulation

I was referred to Seattle Healing Arts by a friend who loves her general practitioner, named Takla Gardney, but she wasn't taking new patients until February. So, I did the next best thing, I took the next available appointment, and let fate take its' course. Turns out, my new doctor is an MD, and specializes in Biodynamic Cranial Osteopathy. I get to meet her on Thursday.


I feel like this is the first step in a whole body healing approach. It's nice that my new doctor has all kinds of treatments at her fingertips. This is going to be great! Since she works with herbalists, I bet there will be someone who can partner with me on the artemisinin front. Very, very exciting! 


In life, we have to take matters into our own hands, especially in medicine. No one is going to fight harder than you. Never forget that. I believe that there is no one sure way to heal. When we run into a road block, we have to outsmart the disease. My goal, obviously, is to kill the tumor cells in my brain. There are a lot of different ways to support my body to make it a tumor killing machine, and I'm on a mission to figure it out. Luckily I don't like being told, "No." If I hear something is impossible, I worry, and wonder if it's true, then I get frustrated and I look for holes. I will not roll over and give up. This nasty little tumor better look out, he's in trouble!