The Butterfly Effect

Holy shit I have been lonesome. I don't normally swear on here, figuring I can probably illustrate pretty well without, but, good God, I had no idea how lacking my life was until I went to camp and met other cancer fighters and survivors in person. Until I bonded face to face; until I spent time laughing about our stories; until I realized that although we have different battles, we're essentially the same. We have the same fears, the same trials, the same macabre humor, the same fighting spirit, the same heart and the same soul.

I have been on this hamster wheel of surgeries, and treatments, and applications of treatments, and with that I've been isolated to our house for well over a few years. Obviously, I get out (I just walked four blocks to the grocery store, in fact), but it's always limited, always within time constraints of the chlorotoxin. I've been conditioned to fear seizures, and seizure triggers (heat, sun, noise, thirst, hunger, emotional stress, physical stress), leading me to micromanage my life to an exhausting minutia. I just want to live, and explore, and laugh, and for the first time in four and a half years, in Moab Utah, I felt normal. I felt completely happy, blissful. They got me. They told their stories that I knew in my bones. I felt it. We were the same.

I do a great job of recognizing the beauty in life. In every single moment I am tangibly grateful for each breath, each laugh. I have a lot of fun noticing the little details each day (the fresh breeze on a new soft leaf, the color of the sky when I peek out of our bedroom window) but I am not living the way I want to live. Not because I have cancer, but because I have so many constraints. Too many constraints. I can't not do the chlorotoxin every four hours. I can't not do my immunotherapy. But what I can do is surround myself with people who get me. People that support me within my limitations. I have a great group of friends, but now I have a tribe. A tribe that feels like family. It sucks, but when you get diagnosed with cancer, all of a sudden everything changes and it never goes back. I've had to distance myself from friends because they didn't understand my needs, both physically and emotionally. I've had friends distance themselves from me for their own reasons. It's a complicated life that we live, and for the first time, talking to my peers, looking in their eyes, I realized that I don't have to entertain my apologetic internal dialog about what I'm going through. Cancer patients don't just fight for their lives, they also shelter the people they love, about their fears, about the true state and reality of the struggle. They try to assimilate, to blend in. It's just easier for everyone, but it's exhausting. It's necessary because people can't really handle our burdens non-stop. It's too real. It's too honest. It's too close to death.

I feel like I've awakened. I feel like I found an oasis, just in time to replenish my body. I don't know how this trip, this experience, will change the trajectory of my life, but it will. It always does.

Moab in Pictures

Still at cancer camp - it's even better than I could have imagined! I keep conquering big walls, looking down, and thinking to myself, "Yep, I just did that." 

And I couldn't have done it without my new friends. My tribe.

I'm living in an alternative universe of the most amazing breed of people. How have I not reached out (in person) to this community before? I've really been missing out.

Daily Routine Revamp

Thank you friends, for your patience; I finally updated my Daily Routine on the blog! People ask me, quite often, what my supplements are, what I dose, how often, the reasoning, the effects, etc. and it's such an exhaustive schedule that I've been working on this for a few weeks. Maybe even months, it blurs. 

In our house we have more supplements than food :)

I've hesitated about naming labels, and giving all of this information because obviously, I'm not a doctor, or a nutritionist. I paid a lot for most of my information, for example my spendy nutritionist, and I feel bad bypassing professionals that I respect. I realize it may interfere with their livelihood. I also don't want to endorse a specific brand, and in the past, I felt that naming my brands in turn was endorsing. But whatever, I've done so much freaking research that I might as well share and save my tumor buddies the trouble. This brain tumor life is incredibly expensive. This isn't a hobby. This isn't a business. This is our lives - it's literally about surviving - and if I can help people, I'm going to do it.

Here's the exact page copied below, with the disclaimer and all. Please let me know if you have any questions, or comments. The scheduling is based directly around my chlorotoxin, that's why it's all timed out. Some of the pills are specifically dosed apart, and similarly, together for maximum efficacy. Others are taken in the morning or around noon because they induce energy, and have to work out of my system so I can sleep at night. Remember that many of these supplements are based on my regular blood work, so don't take it as a list of what you should personally do (although *wink wink* a lot of it is also great generic tumor fighting stuff). This information is just for you to see my schedule.

Daily Routine

I work directly with a nutritionist who monitors my blood levels which dictates the supplements on my list. I have added a couple, or upped my doses, in some cases, but I continue to work with accredited individuals to keep me safe and healthy. I do not recommend following my protocol because your body may be deficient or have excesses which are different than mine. You need to do a unique protocol based on your individual bodily needs. If you want to use my nutritionist, please see the tab titled: My Doctors.

With that being said, I follow this protocol Monday-Friday. On weekends, or on travel days, I do a modified version since I'm often not home and won't have my blender, and can't carry all the refrigerated powders/pills etc. I figure that doing this protocol 71% of the time is pretty damn good. When you start scrolling down you might be overwhelmed, but it's actually a great routine. I'm used to it now, and the scheduling makes it easy to go about my day. It becomes automatic. Best of all, it's one helluva tumor killing concoction!

Please note that this schedule will change and adjust as new blood work is evaluated every three months. 




7:00 am

• 2 Bromelain/4800 mg GDU with water on empty stomach (anti-inflammatory, reduces tumor invasion/migration, boosts immunity, blocks the production of PGE2, reduces radiation side effects) - Metabolic Maintenance Bromelain

7:30 am

• 5 Longvida Curcumin/2500 mg with water on empty stomach (anti-inflammatory, induces glioma apoptosis, anti-proliferative, arrests tumor cell cycle, promotes differentiation, sensitizes glioma cells to radiation & chemo) - ProHealth Optimized Curcumin Longvida

8:00 am

• 6 grams Ip-6 in water on empty stomach (promotes differentiation, inhibits angiogenesis, chelates excess copper & iron) - Source Naturals IP-6

• 30 drops samento/1.5 ml TOA free (boosts immune system, increased vitality, great for low grades - slowing tumor growth, protective agent against chemo & rad effects) - NutraMedix Samento

8:30 am

• Chlorotoxin

9:00 am Breakfast
Breakfast Smoothie Recipe - To swollow pills with:
(Fat 27 g, Carb 14 g, Protein 13 g : Calories 297)

• 1/4 aloe vera juice (aides in absorption/digestion of nutrients) - Lakewood Organic Cold Pressed Pure Aloe

• 3/4 filtered water

• 1 tsp vanilla pure rice protein (keeps blood glucose stable, facilitates new cell growth, prevents wasting) - NutriBiotic Raw Organic Rice Protein Vanilla

• 2/3 scoop antioxidant micro-greens (promotes gene stability, suppresses oncogenes, upregulates tumor suppressor genes) - AmaZing GrassGreen Superfood Goji & Aci

• 1 tbsp fish oil (anti-inflammatory, immune booster, inhibits proliferation, anti-glioma) - Carlson Norwegian Cod Liver Oil

• 2 tsp coconut oil (aids in absorption of amino acids, minerals, vitamins, great omega-3, promotes energy, boosts metabolism) - Nutiva Coconut Oil Virgin Organic

• 9 g/1 tbsp chlorella (chelates copper, heavy metals, pesticides, and toxins, alleviates fatigue, immune booster, supports liver function, adds a little protein) - Now Certified Organic Chlorella Pure Powder

• 1 tsp matcha - green tea powder (apoptosis, anti-proliferative, anti-angiogenesis, sensitizes glioma cells, potentiates radiation) - NuSci Green Tea Extract (100% Polyphenol, 51% EGCG)

• 1 tsp taurine (seizure control, anti-inflammatory, anti-glioma) - Life Extension L-Taurine Powder

• 2 inches of peeled ginger root (induces apoptosis in glioma cells, anti-inflammatory)

• juice of half a lemon & 2 inches lemon peel (stimulate liver, induces glioma differentiation, anti-invasive, apoptosis)

• 1/4 avocado (smooths texture, pantothenic acid - helps fats absorb, fiber, anti-inflammatory, spectrum of carotinoids, lowers cholesterol, regulates blood sugar)

Breakfast Pills:

• 1 metformin/500 mg (regulates blood glucose, sensitizes glioma cells, targets cancer stem cells) - by prescription

• 1 berberine/500 mg (glioma apoptosis, radiosensitizer, enhances chemo, lowers blood glucose, anti-inflammatory, blocks angiogenesis) - Leaner Living Glycosolve

• 4 boswellia/1027 mg boswelic acids (anti-inflammatory, reduces brain edema, induces apoptosis, cytotoxic to glioma, inhibits leukotrienes) - Tattva's Herbs Boswellia

• 1/2 tsp Poly-MVA (been shown to slow/stop glioma growth) - AMARC Enterprises

• 6 drops CoQ10 (lowers blood pressure, neuroprotective, reduces headaches, boosts immune system) - Q-Gel Li-Q-sorb Drops

• 4 ashwaganhda/60 mg withanolides (stress relieving, fights insomnia, fatigue, depression, memory loss, anxiety, lowers inflammation, radiosensitizer, raises WBC, WBC & platelet counts, increases hemoglobin, stimulates immune system) - NutriGold Ashwagandha

• 8 maitake D-fraction/576 mg active proteogucan (boosts immune function, complements chemo, induces apoptosis, sensitizes tumor cells) - Mushroom Wisdom Maitake D-Fraction Pro

• 2 green tea extract/656.5 EGCG 710 polyphenols (apoptosis, anti-proliferative, sensitizes glioma cells, anti-angiogenesis, potentiates radiation) - Life Extension Mega Green Tea Extract

• 2 resveratrol/500 mg Japanese knotweed (anti-inflammatory, apoptosis, anti-proliferative, anti-angiogenic, anti-mutagenic, protects platelets, cytotoxic to glioma, promotes differentiation, sensitizes glioma cells to chemo & rad, neuroprotective, reduces seizures) - Life Extension Optimized Resveratrol

• 10,000 IU vitamin D (promotes differentiation, detoxes, balances neurotransmitters, boosts immune response, cytotoxic to glioma, increases tumor suppressor genes, apoptosis, reduces oncogenes) - Thorne Research Liquid Vitamin D/K2

• 1 vascustatin/750 mg (anti-angiogenesis, boosts immunity) - Allergy Research VascuStatin

• 1 probiotic/42 billion cells (supports the immune system, aides in digestion, stimulates the production of butyrate - a potent anti-glioma compound, supports the creation & synthesis of vitamins, protect us from yeast) - Flora Super 8 Hi-Potency Probiotic

• 1 zinc/50 mg (competes with copper, boosts immunity, induces apoptosis in glioma, enhances chemo) - Now Zinc

12:30 pm

• Chlorotoxin

1:00 pm Lunch
Lunch Smoothie Recipe - To swollow pills with: 
(Fat 28 g, Carb 16 g, Protein 15 g : Calories 317)

• 1/4 aloe vera juice (aides in absorption/digestion of nutrients) - Lakewood Organic Cold Pressed Pure Aloe

• 3/4 filtered water

• 1 tsp vanilla pure rice protein (keeps blood glucose stable, facilitates new cell growth, prevents wasting) - NutriBiotic Raw Organic Rice Protein Vanilla

• 2/3 scoop antioxidant micro-greens (promotes gene stability, suppresses oncogenes, upregulates tumor suppressor genes) - AmaZing GrassGreen Superfood Goji & Aci

• 1 tbsp fish oil (anti-inflammatory, immune booster, inhibits proliferation, anti-glioma) - Carlson Norwegian Cod Liver Oil

• 1 tsp coconut oil (aids in absorption of amino acids, minerals, vitamins, great omega-3, promotes energy, boosts metabolism) - Nutiva Coconut Oil Virgin Organic

• 9 g/1 tbsp chlorella (chelates copper, heavy metals, pesticides, and toxins, alleviates fatigue, immune booster, supports liver function, adds a little protein) - Now Certified Organic Chlorella Pure Powder

• 1 tsp matcha - green tea powder (apoptosis, anti-proliferative, anti-angiogenesis, sensitizes glioma cells, potentiates radiation) - NuSci Green Tea Extract (100% Polyphenol, 51% EGCG)

• 1 tsp taurine (seizure control, anti-inflammatory, anti-glioma) - Life Extension L-Taurine Powder

• 2 inches of peeled ginger root (induces apoptosis in glioma cells, anti-inflammatory)

• juice of half a lemon & 2 inches lemon peel (stimulate liver, induces glioma differentiation, anti-invasive, apoptosis)

• 1/4 avocado (smooths texture, pantothenic acid - helps fats absorb, fiber, anti-inflammatory, spectrum of carotinoids, lowers cholesterol, regulates blood sugar)

• 5 Brazil nuts/570 mcg selenium (boosts immune system, induces apoptosis, anti-angiogenesis, anti-proliferative, stimulates WBCs, increases lymphocytes & NK cells, reduces headaches & seizures)

Lunch Pills:

• 1 berberine/500 mg (glioma apoptosis, radiosensitizer, enhances chemo, lowers blood glucose, anti-inflammatory, blocks angiogenesis) - Leaner Living Glycosolve

• 4 boswellia/1027 mg boswelic acids (anti-inflammatory, reduces brain edema, induces apoptosis, cytotoxic to glioma, inhibits leukotrienes) - Tattva's Herbs Boswellia

• 4 ashwaganhda/60 mg withanolides (stress relieving, fights insomnia, fatigue, depression, memory loss, anxiety, lowers inflammation, radiosensitizer, raises WBC, WBC & platelet counts, increases hemoglobin, stimulates immune system) - NutriGold Ashwagandha

• 2 green tea extract/656.5 EGCG 710 polyphenols (apoptosis, anti-proliferative, sensitizes glioma cells, anti-angiogenesis, potentiates radiation) - Life Extension Mega Green Tea Extract

• 2 resveratrol/500 mg Japanese knotweed (anti-inflammatory, apoptosis, anti-proliferative, anti-angiogenic, anti-mutagenic, protects platelets, cytotoxic to glioma, promotes differentiation, sensitizes glioma cells to chemo & rad, neuroprotective, reduces seizures) - Life Extension Optimized Resveratrol

• 4 alkylglycerols/200 mg (inhibits glioma cells, improves delivery of chemo, raises platelets, slow tumor growth, immunostimulatory, anti-proloferative, anti-angiogenic) - Ecomer Shark Liver Oil

• 3 prolonged release vitamin C/3,000 mg (boosts immunity, increases NK production, inhibits glioma invasion, anti-angiogenic, regenerates collagen, inhibition of IGF-1, induces apoptosis, lowers cholesterol) - PCC Ultra Citro CEE 1000 mg Prolonged Release

• 1 probiotic/42 billion cells (supports the immune system, aides in digestion, stimulates the production of butyrate - a potent anti-glioma compound, supports the creation & synthesis of vitamins, protect us from yeast) - Flora Super 8 Hi-Potency Probiotic

• 1 zinc/50 mg (competes with copper, boosts immunity, induces apoptosis in glioma, enhances chemo) - Now Zinc

4:00 pm

• 30 drops samento/1.5 ml TOA free (boosts immune system, increased vitality, great for low grades - slowing tumor growth, protective agent against chemo & rad effects) - NutraMedix Samento

4:30 pm

• Chlorotoxin

5:00 pm Dinner
Dinner Pills:

• 1 metformin/500 mg (regulates blood glucose, sensitizes glioma cells, targets cancer stem cells) - Prescription

• 1 berberine/500 mg (glioma apoptosis, radiosensitizer, enhances chemo, lowers blood glucose, anti-inflammatory, blocks angiogenesis) - Leaner Living Glycosolve

• 4 boswellia/1027 mg boswelic acids (anti-inflammatory, reduces brain edema, induces apoptosis, cytotoxic to glioma, inhibits leukotrienes) - Tattva's Herbs Boswellia

• 2 green tea extract/656.5 EGCG 710 polyphenols (apoptosis, anti-proliferative, sensitizes glioma cells, anti-angiogenesis, potentiates radiation) - Life Extension Mega Green Tea Extract

• 2 resveratrol/500 mg Japanese knotweed (anti-inflammatory, apoptosis, anti-proliferative, anti-angiogenic, anti-mutagenic, protects platelets, cytotoxic to glioma, promotes differentiation, sensitizes glioma cells to chemo & rad, neuroprotective, reduces seizures) - Life Extension Optimized Resveratrol

• 1 vascustatin/750 mg (anti-angiogenesis, boosts immunity) - Allergy Research VascuStatin

• 4 alkylglycerols/200 mg (inhibits glioma cells, improves delivery of chemo, raises platelets, slow tumor growth, immunostimulatory, anti-proloferative, anti-angiogenic) - Ecomer Shark Liver Oil

• 3 prolonged release vitamin C/3,000 mg (boosts immunity, increases NK production, inhibits glioma invasion, anti-angiogenic, regenerates collagen, inhibition of IGF-1, induces apoptosis, lowers cholesterol) - PCC Ultra Citro CEE 1000 mg Prolonged Release

• 25,000 IU Vitamin A (anti-proliferative, promotes differentiation, boosts immune system, anti-glioma) - Vital Nutrients Vitamin A (from fish liver oil)

• 1 probiotic/42 billion cells (supports the immune system, aides in digestion, stimulates the production of butyrate - a potent anti-glioma compound, supports the creation & synthesis of vitamins, protect us from yeast) - Flora Super 8 Hi-Potency Probiotic

• 1 zinc/50 mg (competes with copper, boosts immunity, induces apoptosis in glioma, enhances chemo) - Now Zinc

8:30 pm

• Chlorotoxin

9:00 pm Bedtime
Bedtime Pills:

• 1 naltraxone/4.5 mg (apoptosis during glioma cell division, increases NK cell production) - by prescription

• 1 lg clove of garlic minced 15 minutes prior to ingestion (protentiates naltraxone, anti-glioma, anti-bacterial, boosts immune system)

• 2 melatonin/20 mg (inhibitory effect against glioma, improves chemo & radiation, boosts immune function, promotes sleep, boosts immunotherapies, reduces seizures) - Life Extension Melatonin

• 12 drops molybdenum/300 mcg (empty stomach: chelates copper, with food:inhibits absorption, inhibits angiogenesis) - BodyBio Molybdenum

• 2 Bromelain/4800 mg GDU with water on empty stomach (anti-inflammatory, reduces tumor invasion/migration, boosts immunity, blocks the production of PGE2, reduces radiation side effects) - Metabolic Maintenance Bromelain

• 5 thymus sprays (boosts immune function, inhibits glioma proliferation, boosts creation of T-cells) - Xtra-Cell Thymus nf Douglas Laboratories

Joining My Herd

My lovely, timid, garden finally produced her first cucumber! (I'm pretty sure it's my fault for under-watering.) There is nothing more delicious than snipping a warmed-by-the-sun cucumber, and taking a big ole bite. The flesh was soft, giving way to a watery crispness. Yum!

I have some pretty exciting news. Remember when I mentioned that this year, my 34th, would be a time of challenges? That I was redefining fear in my life? Well, on Sunday I am flying out to Moab, Utah for a week of rock climbing. It's through a program named First Descents. I applied expecting to hopefully make it into a program for next year, but just a few weeks ago I received an email about a cancellation so I quickly started jumping through hoops. The program I was trying to get into was surfing in Santa Barbara, and I was stoked, but after my physical and final documents made it to their medical team, it was decided that because of my history of seizures I'm not allowed in their water programs; I at least have to be seizure free for a year. (There goes the river kayaking, too!) But, as a very kind gesture, they sneaked me into a rock climbing program instead. I'm so nervous.

Oh ya, did I mention that all the attendees are cancer fighters and survivors?!? That's the part I'm most excited about. I've written about my isolation before, about how hard it can be when you're fighting tumors or cancer, that you can't relate on the same level with your friends, or even your family.

"First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same."

I can't wait to join my herd. (Does that make me a cow?) I can't wait to make friends. I can't wait to laugh! I can't wait to freak out from the heights. I can't wait to kick some rock ass. I can't wait to sweat. I can't wait for the challenge. I can't wait to earn my fear. I am so sick of shooting up out of bed from nightmares. I'm sick of nightsweats. I am sick of sensing tingles, and changes in my tumor cavity, always wondering, Is that the tumor? Am I feeling angiogenesis, a new blood vessel feeding Hermie, helping him grow? I'm sick of fearing brain tumors. I'm sick of fearing fear. It's not that I want to change how fear plays a role in my life, it's that I am changing how fear plays a role in my life. I am taking control now.

I feel guilty taking a week long vacation while Dan works. I feel guilty taking time off of my life, my research, my job helping my friends fight their cancers. There won't be an internet, or I've been told it's spotty, so I'll literally be gone. I feel guilty and lucky that I get to go on this free trip, and get this amazing experience. I feel like this will be a game changer. That it will be a catalyst, empowering me, humbling me, recharging me. In my life, at each turn, I just keep getting gift after gift. Who gets to live like this? This girl. And she's damn grateful.

Out Living

Oh I have been laughing at myself. Me and my big book. Me talking about my fancy new brain. The second I started typing about my progress, Doubt started creeping in. He's such a jerk, that Doubt. I'm macabre in nature, and can not help but wonder if this next MRI in October will prove to be the one where Hermie shows back up. Life is too good. It's going so well. When Doubt spoke up, I literally laughed out loud. The irony of life. You never know when your luck will end. All I can do is enjoy each day, seek out the big books, strive to be happy, push boundaries.

This past weekend Dan and I went camping in north central Washington. We brought friends, new and old. My cell phone quickly drained as we drove closer, and as I unplugged from the rest of the world, my vision became clearer, the sunshine brighter, the river much more blue. I took deep breaths, inhaling the dry wind. I allowed the breeze to ribbon around my neck, sparking private smiles. I'm not much for camping; I'm a girl somewhat tethered to electricity, to amenities. But, man, did I enjoy myself. I swam and swam, lap after lap, in the river. I goofed off with the kids. I sneaked away to read my books. I went to bed early with the sun, and rose with the quail as the sky pinkened. I slept hard, hard on the hard ground. I have bruises on my hips, battle scars. I look at them with pride. It reminds me that this is my year of challenges, of getting out of my comfort zone. The bruises remind me that I'm alive, that I'm out there living.

Where did the girls go!?

Dan caught us snoozing

Our campfire smoke made it a bit hazy, but what a gorgeous spot!

On another note, I've been meaning to mention that for the first time the FDA has approved a pharmaceutical CBD to treat glioblastoma. (Remember my post on CBD for brain tumors and seizures?) The drug was given "orphan drug status", here's the press release, or you can read it below. This is fantastic validation for CBD advocates! The FDA had already granted "orphan drug status" to the same pharmaceutical company, Insys Therapeutics, for two rare forms of epilepsy (Dravet Syndrome and Lennox-Gastaut Syndrome). Boy do I love it that I live in a state that makes it easier to procure, and use medical marijuana. Even though CBD isn't psychoactive, you still have to have a license to grow marijuana, even if it's industrial hemp (which still hasn't passed in the House). We're getting closer, though, to allowing us cancer fighters to do what we have to do to survive. This is our life, our future, our bodies. Ultimately, we should be the ones making the decisions, not the government. We're a unique crew, and should have flexibility, even carte blanche.