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.

Ahead of Ourselves

Yesterday, my adorable little niece and I created our morning green drink. We added a banana, and then stuffed the blender with handfuls of kale. Then, poured some water in the base and Isla flipped the switch. We watched the drink swirl, and as it chopped, I pulled orange flavored fish oil out of the fridge. I love young children because they don't have any preconceived notions. She never said, "Gross! Fish oil?" like an older child might have. I unscrewed the top, sniffed it, and said, "Yummy! Smells like fresh oranges." I passed the glass over to Isla, and she agreed. When the drink was finished blending, we poured it into a large pint glass, adding two tablespoons of the fish oil. We stirred it together and tried a taste. Isla loved it, so I poured a glass just for her. If you look closely in the photo above, you can see the green goo on the sides of her mouth.

It's always fun hanging out with Isla. She's adorable, and hilarious, always willing to try new things. I'm incredibly disappointed that Hermie grew. The day before the MRI, Danny looked at me, smiling, and asked, "If the MRI is good, how many good MRIs will it take before we can make a baby?" Obviously, we were getting ahead of ourselves. That's hard to swallow.

Also, I should clarify from the previous post that my doctor does not agree that the tumor areas are less dense - that is just our opinion.

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!

Juggling Act

I am so incredibly frustrated. This happens lately with each reoccurring MRI, they juggle me around, calling the week prior to change things. They change up my appointments, cancel on me, or switch me to see nurses instead of my doctors, and it's incredibly frustrating! They don't even ask! We schedule my MRIs three months in advance. My parents take time off of work, travel to Seattle to be with me, and Danny takes time off of work.

This time, at the last minute (I still consider a week to be last minute in these trying times), they called to tell me that my neuro-oncologist is no longer going to make my appointment, and that I will be meeting with his "very knowledgeable nurse." I believe there are nurses that know much more than doctors, but in the past, my experience has not been good. Each MRI appointment that was held with a nurse instead of the oncologist has been riddled with bad information. I'm sick of meeting with a nurse, then having to come back to meet with the doctor to get my questions answered. I'm done paying for multiple appointments. It's unnecessary. I only want to talk to my oncologist. If I can't meet with my oncologist, I might as well just get the MRI and review it myself. The nurses always have to refer to the doctor to get my questions answered anyway, as they are very technical - or if you recall during the last MRI review, the nurse said my brain tumor was growing significantly when it actually remained the same exact size (10 x 16 x 9). I'm done with the roller coaster of misinformation. I realize that there will be errors, that medical professions are human, but I'm not going to pay hundreds of dollars to someone who may or may not know what they're talking about.

As a patient, I am a customer. I have hired my doctor to provide a service, which is to review my MRI with me and answer any questions I might have. It is irresponsible to cancel a meeting, and contract out the job to a less qualified (although surely nice) person. This cancer patient seems to get pushed around by her doctors. I hope that I'm the only one. It's overwhelmingly frustrating, right in a time when I least need more stress.

I left a message for the nurse who cancelled the appointment with my neuro-oncologist (she did it over a voicemail no less), letting her know that, "Yes, actually, I do have a problem meeting with the nurse practitioner, it's not personal, but I've hired the doctor to meet with me and review my MRI. My family is traveling from out of town, they've reserved hotels since I can't accommodate everyone. My husband has asked for time off, and in this economy, that's risky. We anticipate these appointments and take them very seriously; this brain tumor is our whole life, everything revolves around these appointments. I realize that the doctor has different priorities, but this cancer is incredibly overwhelming and I wish we would be shown a little more respect. We are willing to meet with the doctor any time throughout the day, surely there's a few moments when he can squeeze us in and honor our appointment."

If my new (yep, he's my new guy - I've only met with him once) neuro-oncologist is too booked up to meet with me, they shouldn't have allowed him to take me on as a new patient. I realize that I'm probably annoying since I'm very hands on, and that I always come with all sorts of questions, but I take my health very seriously. I mean, think about it, I've been told that this cancer is going to kill me, that I should not have children - I'm basically in a holding pattern, waiting for the next shoe to drop. I am astounded that this is how they treat someone who is fighting for their life. Although I do a lot of research about my cancer, my options, clinical trials, western, complementary and alternative treatments, etc., I also want to tap into the brain of my neuro-oncologist to answer my questions. I have a few non-negotiables: I will not over pay, or get double billed anymore (like an appointment with the nurse just to have to make another appointment with the doctor to get my questions answered), and I will not be pushed around with appointments. If they can't meet with me then I will need to find a new doctor (of course I won't tell THEM that - who knows if they'd even care).

I was so worked up just now that I had to walk into the kitchen and try a new recipe. It's was forwarded to me from a friend, and although I've tweaked it, it still has the same bones.

Turmeric Tea
1/2 Teaspoon ground turmeric (curcumin)
1/2 Lime (squeezed)
*Add agave, or stevia if you'd like
*Add milk if you'd like

If you don't appreciate Indian food, you may not enjoy this tea, but man, I swear it is scrumptious. I'm a tea fanatic, I actually have a whole drawer full of various teas, and I'm always excited to try new stuff. This drink is special since turmeric is known to kill cancer cells. It's pretty hard to ingest enough to actually kill cancer, but if you start sticking the root or the powder in everything, it sure makes it more likely! I also took two BioPerine pills (black pepper extract). Black pepper aids in the absorption of turmeric. Some people add milk to the tea, but I don't think it needs it. Another note, you'll want to continuously stir it, as the powder settles.

Sorry, for complaining throughout this entire post. I'm frustrated that I get so worked up about this stuff. I wish I didn't care, that I wouldn't have so many questions, that I didn't need to be integrally involved in my care. I wish I could just do whatever the doctors say, and be satisfied. It certainly would be much easier. The thing is, I just absolutely can not do it. I always need it to add up, I need reasons, and I need individualized care. Each cancer fighter is dealing with a unique situation. Patients react differently to mirrored treatments. Each tumor even in the same category is different. They grow differently, the characteristics may be similar, but they manifest in their own way. It is ingrained into my being that I will not survive if I am pooped through the medical system on a one-size-fits-all conveyor belt.

I believe that someday I won't need to take these MRIs so seriously. Someday my MRIs will be an afterthought, or non-existent. Unfortunately, in the meantime, I'm probably going to continue to be the friendly, yet annoying, cancer patient.

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.

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.

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.

Just A Chapter

Two days ago I couldn't stay awake for more than 4 hours at a time. If you think about it, it's kind of hilarious. I'm like a child sometimes. Yesterday I did high doses of curcumin, piperine and then followed it up with a sulforaphane drink. There's a picture below of the concoction in process. I wasn't able to finish it all, but I didn't throw up so that's progress! I took a big gulp again this morning, and almost lost it. I've saved the final gulp to finish later today or tomorrow morning. My stomach is in complete knots. The only thing I can handle right now is hot tea. I'm okay with that though. The whole point is to keep the drink down, so who cares if it makes me sick, as long as I don't barf. 

A few minutes ago, through the pouring rain, I jogged the lake. I needed a challenge. I've been so damn tired, and for a second, I started to feel a little better. Seizing the moment, I tossed on some running shoes and a hat, snagged Emma's leash, and took off around Green Lake. Oddly, my stomach loosened up as I ran. The rain was refreshing, and reminded me of how fortunate I am to be able to run again. I thought about the long journey after the brain surgeries. This brain tumor is just going to be a chapter in my life, not the whole story. 

Bone Tired

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

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

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

Walking to the retirement home yesterday,  through puddles.

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

Radiation: Simply Foolish

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

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

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

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

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

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

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

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

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

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

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

Am I A Binger?

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

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

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

I need rules. Aaaaaaaaaah. AAAAAAAAAH.

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

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

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

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

My First Video Blog

At the suggestion of a few friends, I have created my very first video blog! It is ridiculous, but I think I'll get better. This one is just a little introduction...

"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!!

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!!

Stockholm Syndrome?

I've been thinking a lot lately about this brain tumor journey that I've been on. It's crazy. What a huge diagnosis. It has completely evolved who I am.

For the longest time I've looked at this brain tumor/cancer as a fight, that I'm at war with this little growing nugget in my brain. But the truth is that Herman (my tumor) has taught me invaluable lessons. I've learned more about kindness, about love, generosity, grace, perseverance, tenacity, curiosity, patience, true happiness, and so much more. Instead of fighting Herman, I'm confused because I'm so grateful. It's such a dichotomy. I have so much love in my heart that I've been able to go through this and learn so much, and at the same time I'm at odds with the fact that the same thing that I appreciate so much is supposed to be my demise. It's confusing.

I was okay, as a person, before the brain tumor, but now I can say that I'm truly proud of who I am. I hope it's okay to say that I'm proud of myself - that it's not cocky or weird. It's just that sometimes, in my past, I haven't always been the nicest person, or the most kind, generous, or patient. I'm embarrassed to say that I went through a decent phase of superficiality while I was in college.

Anyway, I'm curious. I'm curious about how this is all going to play out. I feel more at ease with this cancer than I have ever been. But, I wonder, if I am okay with this brain cancer, is that giving up? I don't feel like I'm giving up. I'm still exercising, focusing on my strict diet, laughing, and living my life, but at the same time, if I'm not "fighting", am I accepting? And, is accepting bad?

I can't quite put my finger on this one. Is this healthy or do I have Stockholm Syndrome? I don't even know how to answer this question.

CRF (Cancer Related Fatigue)

Sorry I've been MIA lately. I've been exhausted. I'm having a hard time getting up in the morning, and just after I eat my green drink I'm back into bed. Thankfully I have books around the bedroom to continue my cancer fight, even if I'm too tired to do much. One of the things I read, surprised me. Apparently, my exhaustion has an actual term. It's called cancer fatigue, cancer related fatigue, or CRF. My brain tumor is fighting for the nutrients I consume, and usually it's the tumor who wins, not my body (according to research). Apparently the brain tumor is similar to a fetus in the womb, it takes what it needs first (at least, that's what I've heard about fetuses).

The fatigue is something I can discuss with my new GP. The doctor at Seattle Healing Arts seemed to be the perfect fit. I have another appointment with her on Thursday to review all of my MRI scans, pathology, and radiology reports. She's a wonderful western style medical doctor and yet, alternative therapy minded. The perfect combo. It's important to have a combination of both. If I'm going to beat this brain tumor I have to straddle the line of traditional, alternative and some day, experimental. I will not look down on any treatment unless it causes more harm than good.

Anyway, I'm pooped. My eyes are droopy, my body is fatigued, and there is no amount of rest to knock me out of it. This thing always comes in waves, hopefully I'm on the crest.

Radiation?

Took this while I was in our room waiting for results. Never the sight you want to see. A sober reminder of what we're going through. It's real. It's growing. It has grown a lot (for my type). They had been watching a section of tumor and it has almost doubled in size. They're also watching a different area that is a conglomerate of cancer cells. My radiation oncologist wants to start radiation. Since Danny was at work, I told the doctors that I needed to discuss the options with my husband. They were seriously upset that I'm not on anti-seizure medicine, but we held our ground (thanks mom & dad for helping my case!).

Right now, even though we all knew this was almost inevitable (other than a miracle), I still hoped I was doing enough to slow or stunt or even completely stop the growth. Apparently, I'm not.

Maybe I can't stop it. Maybe this is just my lot. It's scary and disappointing. I want to hunker down in a hole lined in down comforters. I want a thousand pillows surrounding me, and Dan engulfing me in his hug. I want the two of us to disappear and morph into a dreamland full of bunnies and kittens, and warm breezes.

Sorry if I don't answer the phone, or emails. I need to absorb this. Dan should be home from work soon and we'll need space. Thank you for understanding and thank you for all of the love. I appreciate all of the texts and emails, and posts on the blog. I'm floating above myself, blurry with confusion. What do I do next? What is right? Can I win? Can I beat this? I'm not going to give up, but I do need to regroup.

Good-Bye Anticonvulsant.

Sorry, I've been off my computer for a few days. My mind is mud. I can't think. I have had nothing to write because my brain is a slug. I have feelings and thoughts, somewhere in my gray hazy matter, but I can't connect to them. I can't even do more than basic sentences without needing a break.

Doctors don't even know what exactly causes seizures. They think it's an overactive brain (I'm simplifying here), therefore they prescribed me a drug that blocks or slows specific neurotransmitters. Now, I'm running on a portion of the firing that I usually have. My brain is half asleep. Think lobotomy.

Yesterday, it got so bad that I emailed my nurse and told her I want off the Dekopate. I asked for a schedule to decrease the medicine. It's too much. Also, over the weekend, I noticed a small rash on my right shoulder. In the Patient Advisory Leaflet (pharmacy info) under the Side Effects portion, it says, "Symptoms of a serious allergic reaction include: rash..." It continues to mention that the rash is a sign of severe liver problems. That sounds fun. All in all, I'm exhausted, mentally slow, my vision is blurry, my moods are horrible, my heart palpitates and I'm just a fraction of myself. I can't even write. I can't think.

So, today I did not take my morning anti-seizure pill. I emailed my nurse and reminded her that I want a schedule to decrease the dosage, and I mentioned the rash. 

I refuse to live like this. I might not be able to control some of the biggest things in my life; I can't drive to get to the grocery store or even a doctor's appointment. I also can't change the fact that I have the tumor nugget growing in my brain. But I can limit the bad drugs that ruin the quality of my life. It's one small step that can help me be happier.

On this pill I feel like I'm slipping away. I just want to get back to being me, even if that means a seizure here or there.