The Post-Traumatic Stress of Cancer

As you guys can tell, I haven't been posting much. I've been trying to soak up as much life as possible. There's so much to see and do and experience. Half the time it's just around my own neighborhood, but also, since I've completed the years of Chlorotoxin, I'm free to eat and drink whenever I want. I don't have to administer medicine every four hours, and it's freeing. It's been weird, and a daze and a miracle and a gift. To feel human again, and "normal".

It took a few weeks to absorb it. I kept withholding food and water because the treatment protocol had been ingrained into my system. To be able to drink water whenever I want, all day every day, has been the most exciting thing. It's not that the treatment protocol was so hard, necessarily, but to go without water for four to five hours a day when dehydration triggers seizures has certainly been a challenge over the past two years. It was debilitating. The only thing that I fear more than a seizure is a recurrence, just to put it in perspective.

Honestly, I'm literally terrified every second of every day. I'm able to shove it off and distract myself and breathe and align myself with gratitude, but that when the night falls, when silence creeps across the threshold, my mind gets louder and louder. The cracks in my brain, the hot spots, the unique headaches, start talking. They nasally laugh and tell me in their jackal voices that I can think I'm winning, but they know something I don't. They scoff and trip my walking mind. They tell me I'm dying, that everyone with this cancer dies.

So I don't sleep well. I read my books, my lids drag down. I turn off the lamp, I sigh that deep sigh, and I start to drift. And just between thoughts and fantasy, my body jerks and tenses. My pores prickle and sweat. My heart races, my head spins with delirium. I think of everything wrong that I've eaten, every supplement I forgot to take that day. I kick myself for not exercising, for not taking my care more seriously. Because the truth is that I'm not as diligent as I used to be. My diet is not on point, I am not the machine I once was. I want to live, but at the same time I want to LIVE.

I don't think I'm alone in the late night self loathing. I don't think I'm alone in the late night overthinking. I wish it was something I could turn off, and boy do I try, but it's in my psyche. It is who I was from the time I was in the womb. It's in my core, and as much as I meditate, as much has I repeat my mantra, "Thank you. Thank you. Thank you." It's not enough, this doubt, this overactive mind is on a cellular level.

So I live, and I ride my bike, and go for walks with my walking group. I garden, and laugh with friends, and play with our dog, and snuggle with my cat. I paint, and I continue to be awe of the fortune of my life, my health. But deep down, I continue to be scared. My body has memories of pain, a deep sadness, the fear of death, the throwback of when I was diagnosed, when I was awake and they were cutting into my brain. The flashbacks to the recovery, relearning how to read and use a knife. I feel great, I love my life, but I have post-traumatic stress that I live with, and can't seem to fix. And the fear is that I don't know if I ever will.

Thank you to the sweetheart who anonymously commented on the blog on the 4th of July weekend wishing us a wonderful holiday. It made me feel incredibly special. We went up to Friday Harbor our hometown to spend time with friends and family. It was magical. We even got out on a friend's boat to do some fishing and were surrounded by a pod of Orca whales. It is not lost on me that I was raised on a piece of heaven. Friday Harbor is a panacea to my soul.

Change is Coming

We are on the cusp of serious changes in the brain cancer world. Serious changes!! I can't even believe how fortunate I am to have been diagnosed during this time. Imagine, the first fMRI (a scan to navigate the brain before surgery so that doctors can avoid healthy systems and only cut out tumor tissue) was in the early 1990's. Eeeek! I'm 10 years older than the fMRI. Yikes!! If I wouldn't have had an fMRI for my first brain tumor resection, I could have come out with the permanent loss of my speech, and motor movement. Holy cow would I be a different person. A lifetime in a wheelchair? A permanent inability to speak? A permanent inability to read and process language/speech? In ability to communicate? Would I have essentially been a vegetable? Ugh. That makes me feel viscerally ill, then immediately relieved. Thank you for those who have blazed before me. And now, it is my duty to help others who may come in my path.

I can't share the super secret details about this new badass cancer fighting company out of San Francisco until it launches in February, but please know that things are about to change. This is going to blow your minds. I'm not saying this to be a jerk, or to just dangle my secret, I'm saying it because it's going to bring more hope and save more lives than anything I've ever witnessed regarding cancer care.

If you're dealing with brain cancer, you know that not much has changed in treatment for decades and decades and decades. Why? We know, YOU know that so many things can help fight cancer, and yet brain cancer has a horrible cure rate - in fact almost all cancers have a horrible cure rate. Why is that? We know that it isn't because there aren't things that work. Is it because it's hard to institute change? Because it takes forever for clinical trials to complete? Is it because clinical trials usually only use one treatment, when it's clear that to fight cancer you need to have multiple cancer fighting modalities? From my own research, and now for the past year with astrocytomaoptions.com's research, I know that there are all kinds of things that fight brain tumors. But why is it that the research is published, yet not instituted? And why don't we hear about it? Why aren't doctors familiar with what works? With off-label drugs, and diet, and nutrition, and clinical research? And meanwhile people are dying. They're DYING. For whatever reason that they don't help us, be it their fault or not, it's unacceptable. And the only way that things will change is if we institute change ourselves. Reference the fight against HIV/AIDS. They demanded change. They marched for it. They screamed at the top of their lungs because people were dying. Why aren't we doing that? Why aren't we pissed?! Oh wait, we are pissed, but it's complicated. We're tired. We're confused. Our disease afflicts our brains, our epicenters. It effects our energy, and our thought processes, our reasoning, and our logic centers - it's different for everyone, but ultimately, it makes it very hard. We don't know how to make the change that we want to see. But for the first time, I just caught a glimpse of hope about a new system of treatment, and it's going to be public in February, along with the trailer for a new documentary about brain cancer, featuring Ben Williams, PhD., also available in February. (If you're not familiar with his amazing story click HERE.)

I hope this trailer excites you as much as it did for me. Complete goosebumps. And I hope it ignites a fire. Everything is culminating in February, it's all coming together. It's time to take charge, and start demanding change, and I can't believe I'm alive, and part of this movement. Albeit a small part, but still a part. Please let me know what you think about the movie.

Enjoy. (Click image.)

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

We Are Strong Beyond Measure

I can feel it in my bones; I've turned a new leaf. I am no longer fighting this role I've inherited on Earth, this brain tumor life. I am whole heartedly embracing it. I'm enthralled with the research, the supplements, the current treatments, the treatments down the line. I am happy to eat my veggies, and down fish, flax seed, and coconut oil. I'm thriving on clove after clove of garlic and pill after pill. 

I can't believe medical professionals - educated people - said I wouldn't walk or run or read again after my hematoma. Here I am, I'm thriving. My brain is so happy it wants to kiss me. I just went down to the lake to take a break from all of the cancer research, and my light reading is on quantum physics. And I love it. It makes sense. It excites me, and challenges me, and makes me giddy. Who would have thought? Clearly not the doctors. 

The brain is miraculous, and if you treat it with kindness, feeding it the right foods, exercising it with new stimuli and challenge it, it will sprout new cells, and new connections will be made. I can't believe that I'm one of the lucky ones where my diet and lifestyle and perseverance is working to heal my damaged brain. Depending on the damage, I'm sure it doesn't work for everyone. That's the thing about life, there aren't any guarantees. All you can do is give it your best shot. And never give up. And when miracles happen along the way, whether they may be small or large, celebrate your fortune.

It has taken 4.5 years to recover from the hematoma and hardening of my duramater. It almost killed me, but it didn't. Some people like to say, "What doesn't kill you makes you stronger." I hate that saying. I think I was always this strong, just as strong as I needed to be to get to where I am today. I didn't need a disaster, a diagnosis, to make me into a new person. It was always in me. I think that's true with all people. Some may just need to dig a little, but it's there. We're all infinitely capable. We're strong beyond measure. We just have to believe in ourselves. 

It's All About Images

Good morning. Sorry I haven't written in a week, I've been dealing with a horrible reaction to one of my treatments - cystic acne. GROSS. It has been all over my entire face, and one of my saddlebags. (How is that even physically possible?!?) It was absolutely disgusting. I've since kind of gotten it under control. My friends didn't believe that it was that bad (apparently I'm always saying that my skin's broken out when I only have a zit or two - whoops, the girl called acne too many times) so I had to send them pictures. And finally, with solid proof, they relented, agreeing that my breakout was major.

I had been dealing with acne for the past month, and I wrote it off as stress related, a disappointing side effect of MRIs. But as it continued to worsen, even after the MRI, I realized that I needed to reevaluate the issue. First, I stopped all treatments except the blue scorpion venom. Then I looked back to the times I started various supplements, and I talked to Dan, analyzing if we remembered any bouts of acne. Finally, looking back to my log book (which is not as thorough as it should be, but still quiet helpful) we pinpointed the PolyMVA as the most likely culprit.

I also wracked my brain about any changes in cleansers, laundry detergents, etc. but nothing had changed. I started looking into the PolyMVA and read that it is comprised of a variety of B vitamins like B1, B2 & B12 (and some other antioxidants). According to what I've read around the internet, B12 stimulates sebum production (the oil on our skin) and excessive sebum is what causes cystic acne; it's what clogs the pores. Some people with even the slightest supplementation of B vitamins breakout in pimples, and I was doing major doses. Anyway, I'm sure you guys don't really care about acne, but I'm telling you the acne on my face was debilitating. I didn't leave the house until yesterday. Almost a whole week. Man, I'm vain. But seriously, my face literally hurt, so it wasn't actually purely about looks. I talked to another BT (brain tumor) friend who has been taking PolyMVA for, gosh, I think a year or two and she has never had any problems. But each body is different, and each body's needs are different. And I have exceedingly sensitive skin, it's practically impossible to please, so even the tiniest of adjustments could lead to a nuclear situation.

So how did I fix it? Well, I still had several days worth of Accutane, so I started taking those again. Accutane dries up sebum production. I also started putting tea tree oil on my face, a more natural way to do the same thing. For the first few days, it was not getting better, and I was frustrated, discouraged. Good thing my parents were headed over for the West Seattle all school high school reunion Friday, and my dad's 50th for West Seattle on Saturday, and mom packed the big guns for me. Gotta love moms, they're always saving the day. I've been terrified of chemicals, never knowing what contributed to my cancer, so I try and do things naturally, but sometimes in order to get things under control you have to make a deal with the devil. It took several applications of Retin-A, and several applications of Benzoyl Peroxide. Both, I believe, are known carcinogens (at least in some countries - our country likes dispute carcinogenic claims, even when well documented). But I HAD to. I have pictures to prove how disgusting it was, and I don't want to show you, but at the same time, you almost have to see how disgusting it was to understand. It's embarrassing when your skin is rupturing. It's your shell, your image. It implies that there's something fundamentally wrong with you. I'm trying to live as a vision of health, so when something like this happens it shakes you to your core. You feel helpless, disgusting, like a failure.

Okay, I can't do it. I can't move myself to upload the photos, or even one of them. I'm too embarrassed. Too proud. It's weird, I mentioned this to a friend a few weeks ago, that although I'm married, and fighting cancer, I still want to be seen as attractive. There's this thing that happens when you get diagnosed with a "terminal" cancer - maybe for any kind of cancer, I don't know - people love you, so they feel bad for you. They may not describe it as pity, exactly, but you get tossed into a different category. Almost ambiguous, and asexual. People see your trials, and know your struggles, what you're working with, and you become less human. Or too human. You become either too vulnerable to tease and flirt, or you become too scientific, too medical. Of course, here I am blaming everyone else, maybe it's me, maybe I'm just too serious. That I'm different. That's possible. I've talked to others though, in my position, and there's definitely a divide once you're diagnosed. People don't know how to handle us. It has to be awkward, I guess.

Regardless of all the above written word, I have to say that acne - although frustrating - is a great issue to have. Acne is fixable. Just a few weeks ago we were worrying about radiation, clinical trials, discussing what we would do if the tumor was back. And I wish I didn't care about being attractive. Dan has always found me sexy, even when bald and simple minded, that should be enough. Who cares what other people think? Right? I don't know why it isn't just that simple. Ego? That's embarrassing to admit.

Here's a much cuter picture than me, it's my father's senior class photo. Isn't he adorable?!? Man, I can finally see Kaal (my brother) in that face. Crazy how we grow into our parent's images. Pretty cool.

Cancer as a Metabolic Disease

I have been hounding UCLA for MRI results from my April 20th scan. (Apparently, Dr Liau has been out of town since Friday and will return on Thursday.) Just an hour ago I got a phone call from one of Dr Liau's colleagues letting me know that my MRI is being assessed tomorrow at the UCLA tumor board. That is where they decide if they're going to recommend radiation. Yikes. Although I will opt out of radiation regardless of what they recommend (at least I believe I will), it would definitely scare me if they think I am at a place in tumor growth that would warrant such a drastic treatment. Of course, radiation does not extend my life, and causes such irreversible damage, I feel it would be crazy for me to even entertain the thought. Although I don't have to be afraid of the damages of radiation at this point, I am terrified of what that recommendation would imply. I'm hoping to find out their recommendation (like watch and wait or perhaps even extend my MRIs to six months or worst case scenario - radiation & chemo) either Thursday or Friday. If I have to wait until next week I don't know what I will do.

As an aside, Dan and I had a blast camping and although I didn't eat too poorly, I did jump out of ketosis. It was totally worth it though - we had a blast and even enjoyed some of my mom's delicious cookies. To jump start my ketosis, I started a water fast last night. I'm excited about it, and feel great. It will only last a couple of days, and I'll rest and continue researching in the meantime. Water fasting is incredibly healthy for your body. I've been researching and emailing the ever gracious Dr Thomas Seyfried with questions about his research and book, Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer, and that's what has turned me into a true believer. If you have brain cancer, you truly must buy this book and learn about real research that will effect and extend your life. It's truly amazing. It's very expensive, over $100, but it's a literal text book that will not leave you hanging. It is so detailed. And, I didn't understand figure 17.1 so I emailed Dr Seyfried and he clarified within a few hours. How cool is that!?! If you want to combat your brain cancer, to do whatever you can, there is no other place to start. The science is proven, time and time again, study after study - even replicated in humans (not just in mice).

From the research of Dr Thomas Seyfried, I have purchased a Precision Xtra Blood Glucose & Ketone Monitoring System. It will help me keep my blood glucose levels low (55-65) and my ketones stable (4.0) through monitoring, which will limit the food sources of my tumor. No more guessing. Monitoring my glucose and ketones is a natural step since I've already been recording, measuring, and limiting my foods. I'm excited to see how my supplements effect my blood glucose levels, also I've read lotions and bath soaps/shampoos can spike blood glucose. I can't wait to turn myself into a little lab rat!

To be clear, the restricted ketogenic diet is not enough to stop my cancer, however, it drastically slows tumor growth.

Coffee Enema

Three guesses about what I'm about to do when I finish this post.....

Really quick, thank you for all of the amazing comments, and support for my treatment!! I appreciate you guys so much!

I have a funny, gross post today...I have been meaning to do a coffee enema for about, well, a couple of years - ever since I started researching important things to do for cancer patients. I really do want to do this enema, for the results, but I'm TERRIFIED of the process. Coffee enemas are very effective at stimulating the immune system. (Check out The Gerson Therapy.) Therefore, I figured it is now seriously time for me to buck up. I've made it this far, taken all kinds of supplements, conquered a few brain surgeries, and now I'm embarking on an immune system boosting treatment with the vaccine....I should be woman enough for a coffee enema. Right? GROSS!!! I can not believe I have to do this. I'm supposed to do it once a week. I hope this doesn't turn into a complete disaster. Wish me luck. Sorry, is that too much to ask? Sorry if you're totally offended.

EEEEEEEEEEEEEEEEEEEEEEEEEEK!!!!!!!!!!!!!!!!!!!!!!!!!

Here goes nothing. Or, more accurately, here goes my innocence and dignity...

New Supplement Recommendations

Sorry it has taken me so long to give the update on the supplements that Dr Chang recommended. I'm going to break them down below:

Lactoferrin (250mg 2xd) - Immune booster (read more here)
EGCG (250mg 2xd) - Amazing antioxidant (read more here)
Cloud Mushroom Extract (1500 mg 2xd) - Immune booster/cancer suppressor (read more here)
Thymus (4 sprays 2xd) - Immune booster (read more here)

Banerji Protocol 
Calc Phos 9X (3 pills dissolved under tongue @ 10:00am, 4:00pm & 10:00pm) - (read more here)
Ruta 6C (3 pills dissolved under tongue @ 7:00am, 1:00pm & 7:00pm) - (read more here)

I recommend researching all the different supplements on your own if you're interested in taking them. If you are concerned about quality, please check out Dr Chang's website, all of them are available there, and I trust him.

To Knife or Not To Knife

Yesterday, I walked a couple of loops around Green Lake with my friend Lauren. On the way to meet her (she lives in Green Lake like me so we meet half way), I saw this gorgeous dahlia. I mean, I think it's a dahlia. It was misting, and every plant had mother nature's glitter. It was a beautiful morning, a great day to be alive, to be healthy, to be able to walk and explore and laugh and talk. The possibility of another brain surgery reminds me of all the trials I worked through before. The first two brain surgeries were incredibly hard on me, and the recovery for months and months and months were horribly trying. But, I got through it. At times I didn't know if I'd get better. I didn't know if I would ever get my speech back together, find the words that I wanted to communicate with, my phonetics and word finding were in pieces. I didn't know if I would ever read again, or once I was able to slowly read aloud, like a child just beginning, I didn't know if I would ever be able to understand those words.

Any fears I might have about undergoing another brain surgery are definitely founded, but it still shouldn't hinder me from moving forward with a successful treatment. I used this analogy with a friend yesterday when she was picking up her cherries (thank you!), I want to hit Herman with a firing range. I want an arsenal to beat this tumor, hit him from all angles, give him no reprieve. Technically, according to the research, it's possible to cure my type of tumor in rats with various high dose supplements, and of course, our friends have already stopped theirs. But, I haven't been able to ingest the amounts that are necessary for killing doses like my friends did. We think that we're winning the fight, that the smaller amounts that I take might be holding Hermie at bay, or perhaps even reversing some of his growth, but the MRIs have not been definitive. In fact, my oncologists, and the radiologists, believe that Herman has continued to grow progressively. In order for me to be comfortable, I need to see more serious results.

At this point I take 29 pills in the morning, 24 pills in the afternoon, 48 pills in the early evening, 8 pills shortly after that, and finally before bed I take 6 pills. Most of them must be taken with whole milk so I'm tethered to a refrigerator. It's exhausting to keep up on the schedule, and I'm sick from swallowing all the pills - not to mention the fact that I feel like a cow. Literally. I find that on most days I don't even leave the house. The supplements may take years to heal me, and I need to keep on them in order to stay in front of Hermie's growth, to hold him back. It's a lot of work. If I go through with this clinical trial I might be able to aide my immune system to fight Hermie on my own. My body might be able to clean up the tumor, and heal itself. I could still take the majority of supplements, or all of them if I so chose, as my immune system also went to work. It would be an arsenal against Mr Herm. What's better than that?!?!

I'm scared to do another brain surgery, I think I've made that blatantly clear, yet I'm excited for the possibility of a personalized tumor vaccine. The freshest tumor has the best chance for success, so the surgery truly is necessary to be the most effective. Bad things can happen during surgery, I'm proof of that, and I'm actually very fortunate because I recovered from most of the ill effects of my brain surgeries. Some are not as lucky. But, this treatment could also heal me. It's a gamble, and we won't know if I'm a winner unless I go through with it and see what happens.

Love, True Love

My girlfriend Meghan just emailed this photo to both Danny and I. How fun! I had never seen it before. I can't believe how short my hair was, and how far I've come. I'm so fortunate to have such a wonderful man who loves me so deeply. I'm incredibly grateful to have such wonderful friends, and an amazing family. I am not defeated.

Last Thursday was a turning point for me. I had breakfast with Jude, and Seanene, and after I jogged home, I called So Cal Patti. I had been living on a 25% belief that I could beat my cancer, but then, throughout the day, something shifted. When he came home from work, I told Danny I was at a solid 75% which is great news because I had been tearful at the drop of a hat before Thursday. And, I'm incredibly happy to report that after this past weekend, I realized I'm back at 100% again - just like the old days. I can't explain it, it's just a gut feeling. That's not to say that I'm not fearful for my journey, but I'm more excited about the future success of my treatments.

Somehow I realized, truly absorbed the notion, that I am incredibly healthy. That no one would ever expect me to be ill. That I'm shockingly healthy, and capable, and fortunate. I have been surrounded by a loving and selfless man who continuously makes me laugh uncontrollably, and I have mounds of friends who endlessly hug me, and give me their love, constantly filling up my soul. I have family who will stop at nothing to help me beat this. I have new friends who have found me from this blog, and continue to support and love me even though they have their own challenges in their lives. I am alive, I am thriving, I am quite possibly the luckiest girl in the world.

I want to say that "cancer" is just a word, but that would downplay the reality. Cancer is serious, it's scary, terrifying actually, but life is full of beautiful relationships, of love, laughter, and kindness. Somehow, I no longer really feel like I have "cancer". I feel like I am a whole person, completely healthy, incredibly capable, and that my choice to do this chemo drink, to take all of my supplements, to exercise, to partake in the IV treatments, and to practice my deep breathing, are all to keep me healthy. I feel like I'm more in the maintenance phase than a deeply stressful fight to save my life. It's an amazing evolution, one that was necessary for my survival. People can not function in survival mode for long, not without enduring serious consequences.

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.

Bad Beet Grit

Help. I can't seem to clean my beets properly. The juice was delicious, but the grit was disgusting. I still managed to drink the whole pitcher - I just pretended I was camping. The flavor was wonderful, truly.

Beet Juice

2 Large Beets (greens, stems, roots, everything)

7 Carrots

1 Granny Smith Apple

1 Inch of Fresh Ginger

Any suggestions on how to clean the beets? I noticed that even the leaves are littered with dirt. The beets really add a wonderful flavor to the juice, and beets are known to increase the body's production of glutathione levels which help fight cancer, especially tumors, so I can't just omit the red buggers. Somehow, the body uses glutathione as a master detoxifier, and the body uses it in the cleansing of each and every cell in the body. Research shows that cancer patients are massively deficient in glutathione. There are supplements to help boost your body's levels, but the problem is that glutathione is synthasized in the body by combining three specific amino acids. Therefore, supplements don't really work. You need to use food as your supplements to truly be effective. I think that's why all of the medicine, and supplements, in the world don't seem to make you healthy if you have a poor diet. It's fine to eat bad food every once in a while, but we need to nourish our bodies daily so that we have the building blocks to fight cancers, disease, fatigue, etc. 

So.....although the beet juice was a success (minus the grit), last night's dinner drink was pretty rough. I followed a recipe called, "Immune Builder." I've been nervous about Dan since he's been doing night work. He leaves for work at about 10:15 pm, arriving home in the morning at 8:00 am. They're doing taxing work, ripping out old escalators at the airport. He loves his job, but I worry about the irregular hours, and his exhaustion. As we speak (...or as I write...), Danny is curled up in bed with the curtains drawn. He'll remain there until late afternoon or hopefully into early evening. I have my little MP3 player on, quietly blogging, and running laundry in the basement. Anyway, I digress, my point is that I thought I'd find a good juice to boost our immune systems. Obviously, I'm always in need of some extra help, and although Dan seems to conquer any bug that swims into his airstream, I figured it couldn't hurt. 

Immune Builder (you'd better like garlic - Larry, this one's for you!) - serves 2

8 Carrots

4 Garlic Cloves

4 Stalks of Celery 

1 English Cucumber

1 Granny Smith Apple

The immune builder is definitely a breath buster, but least we were stinky together. In the future, I think I'll keep the garlic in our foods, not in the beverages. It's too confusing. I wanted to chew it. If anyone has any specific juicing suggestions, I'd love to try them out!

The Time Will Come

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

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

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

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

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

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

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