Keeping Connected

Do you ever feel like you're living a movie? I do. And yesterday was the most hilarious illustration of it. I had a doctor's appointment in Ballard, so for the first time, I packed up my venom and secured it into the basket of my bike. I strapped on my too-tight helmet that I borrowed from my friend Meghan, and I started out on my ride. I had yet to ride on the street, so far I had only ridden at the park under Dan and Emma's watchful gaze. I wobbled on my squeaky bike, cool breeze on my face, passing block after block. There are probably a billion different ways to get down to Ballard from Green Lake, but being a newbie biker, I decided to punch the address into my Iphone so that she could just give me voice instructions as I peddled. I don't know if she sensed that I ate carrot cake the night before, but she picked the hardest hill, and since I was distracted sniffing all the sweet air reminding me that it's jamming season, I didn't have the opportunity to reroute, and before I knew it I was in serious trouble. Quads were burning, face flushed, a man even stepped out from his landscaping to ask playfully if I was going to make it. I hollered back over my shoulder, "I doubt it, this was a horrible idea!" I caught his big smile, and I pushed harder, lungs on fire. Luckily it was a quiet street so I could eventually wind back and forth like a sedated snake. At the top, from several blocks below I barely heard behind me, "Woo hoo! I knew you could do it!" I tossed a wave, and laughed. I couldn't help but absorb the charm of living life slow, the difference between driving everywhere and walking, or pedaling, and how connected it keeps us as humans.

That big hill was just the beginning of the trip, and as I was timid, afraid of cars, I found drivers stopping where there was no stop sign, just to let me cross over busy streets. Me on my rickety rusty buddy. It was amazing. I was having so much fun peddling all around Seattle, re-energized by the niceness of people. Other bikers probably sensed my newness, but I couldn't help but smile and laugh and soak up the experience. I checked out streets I'd never seen, saw plants I'd never known existed, read crazy Seattle homemade signs. (I love us, but we're weird up here.)

Isn't it fun how the littlest things can make you laugh for days? Even in the midst of a crazy life, even when dealing with heavy topics, life always has a way of balancing things out. It's beautiful.

Ethically Ending

How fortuitous is this article? Very fitting considering my most recent post. The article is good, but the video at the end is eye opening, and heart wrenching, and beautiful, and real. These are the things that we must ponder when dealing with cancer. It's a very dangerous topic because people tend to have polarized, strong opinions about ending your own life, even when you're terminally ill. I have a lot of emotions wrapped into the debate, but I'm not hard core on either side. My motto, though, in life tends to be, "Who am I to tell someone else what they should or shouldn't be able to do with their life, and their body."

She's young. She is newly married, and was trying for kids, then boom, life changed in an instant.

I respect her decision. I also don't think I would have the cojones to swallow those pills. But maybe I would. You never know how you would handle a situation, until you're in it.

One thing is for sure, October 30th is now burned into my mind, and my heart. I will be thinking of Brittany, her husband, and her mother for a long time to come, I can tell.

Life On My Terms

I had an epiphany last night. It was profound, and yet seems so simple, so clear. I feel like that's the story of my life. My mantra should be, "Look again, there's probably something obvious that will make you feel better."

To preface, I have to explain that I don't sleep well. Actually, I'm a horrible sleeper, one of the worst. Always have been, but of course now post diagnosis it's worse. If Kevin Hart was judging me, instead of Dancing With The Stars, he would give me a 2 out of 10 (and we all know how easy he scores). Most nights I start to fall asleep, and just as I'm on the cusp of slumber, my right hand goes numb, or tingles, or perhaps it's my right leg, and I snap out of bed afraid I'm about to have a seizure. Naturally, this is not conducive for sleeping. The other day, I shared how afraid I've been about my upcoming MRI. And how much I hate that. I hate being afraid. But what occurred to me last night is that my deep fear isn't the MRI, but what the MRI could set into motion, like another brain surgery, or radiation or chemo. But, while I analyzed those fears I thought to myself, I've already gone against doctor's wishes, and it has proved to be better for me, both mentally, physically, and even longevity wise. That I have been rogue for a few years with my treatments, and instead of being afraid of what doctors could tell me to do, I've done what I want, even though their words hovered, and have permeated my psyche instilling fear. But you know what? I'm the only one who can control the thoughts in my brain. I choose to allow fear in, therefore, I can also remove the triggers that instil the fear.

This cancer will be on my terms. I will no longer have that deep rooted fear because I will know that I will only do what I want. I will not be pressured out of fear. I will do standard treatments if that's what feels right. But if it doesn't then I won't. I'll cross that bridge when I get there. This is my life, my one shot. I don't want to regret a thing. And if that means I die young, then that's what it means. Truthfully, if I am going to die young, then it was probably going to happen anyway. But it will be my journey, and I will be true to myself.

Man it's a relief to realize the power I have. But, that power will be diminished if I stray from my heart. We all have our own paths to take, but we also have to blaze alone.

I mean, what is the purpose of this life? Could it be to remain true to yourself? Can that really be summarized in a one-liner? I don't think so. Life is vast, and minute, full of variables, and surprises, and gifts, and challenges. I don't have the answers, but I do know that when I finally fell into a deep sleep, lips upturned in a subtle smile, it was from the rolling thought of, Thank you for this life. Thank you. Thank you. Thank you. Thank you. Thank you.....

This morning, born out of the ashes of my new found strength, I made the most delicious smoothie in the history of Jess smoothies! I even made some smoothie friends.

Matcha Latte
1 tsp ceremonial matcha
warm/hot unsweetened almond milk (enough to fill the cup)

Fill the mug 1/4 full with the warm/hot milk, add the matcha, whisk vigorously. Once it looks nice and creamy, fill the rest of the mug with milk and do a final whisk or two.

Apple Cider Vinegar Aperitif 
1 tbsp ACV (with mother)
filtered room temp water

This one's pretty self explanatory.

Spicy Salty Sweet Green Smoothie
coconut water (add as you blend to the consistency you desire)
1/2 cucumber (with peel)
1/2 jalapeno
1/2 green apple
1/4 lime (skin and all)
1 large handful of spinach
2 leaves lacinato kale
2 inches of ginger (peeled)
2 tbsp fish oil

Blend it all together until it's creamy (it's the fish oil that gives the great consistency, but you can substitute flax seed oil, or coconut oil if you prefer, it may change the taste a little though). This batch fills two glasses.

Venom-ing All Over Town

Sorry I'm not posting much these days. I can't seem to get my thoughts together, which sucks because I have so many stories. It's times like this that I can't help but be afraid that the tumor is growing back. I can't remember even basic things, let alone important details. It's ridiculously scary. I realize that stress messes with the mind, and I've been doing a lot since Moab, in fact just a couple of days after I got back I flew to NYC for my most recent immunotherapy shot (it was so fun to see you Nate, Miriam, Sol & Larry!!) - but still, it feels different. But maybe it always does.

I talked to my dad the other morning (maybe it was even yesterday - it's all such a blur) and we started the process of scheduling my next MRI which, once approved, should fall on October 25th. I had a total and complete breakdown just scheduling the scan. I'm so scared. And I hate that I'm scared. So I did the only thing I thought to do, I reached out to my FD campers, knowing they would understand. And within moments I was surrounded by love and support. They get it. They know that fear intimately, an ominous cloud, the Grim Reaper hidden in its' dark folds, red eyes glowing.

My brain may be fuzzy, tired, not-connecting, sad, scared, out-of-wack, but I made a deal with my friend "Crush" (Katie) that I was going to make it to the gym every day, Monday through Friday, from now until the MRI. I only have to be there for five minutes (although so far I've blown that out of the water). It's a trick to get me moving, to distract me. A rule to get me out of the house, and out of my situation.

I used to just chill at home most of the time because of the venom, and its' applications (gotta refrigerate, have to find a spot to lay down, etc.), but when I was with First Descents, on our final long three pitch climb, our FD Instructor/Camp Facilitator/Friend "Honey Bucket" climbed up the mountain with my venom strapped to her back so that I didn't have to sit below in the car by myself. It was profound. It changed me. Somehow it had escaped me that I could stuff a cooler into a big pack and go. To get nuts and live; to live like a normal person, not a hermit. (Sorry hermits, I still love you.) So I've been off on park benches, on rocks, on anything that will sustain me, dropping chlorotoxin into my nose. I've grown thicker skin, ignoring the stares, the odd looks, the whispers.

Honey Bucket with venom in tow

Venom-ing at JFK by myself (super tricky photo op)

Venom-ing on top of Mt Si

Venom-ing on a walk with Dan

So, again, I'm sorry that I'm finding it hard to think straight, that it's hard for me to formulate blog posts, but I'm sure you understand, and I appreciate the compassion. For my sanity, I must get out of the house and move my body, or it feels like I will evaporate, or disintegrate, or spontaneously combust, leaving only fingernails and hair in my wake. (I don't know why the hair and nails would remain, it's just a hunch.) Off to bed. With love, Jess

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.

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. 

Acceptable Growth Deemed Stable

Sorry it's been a long time since I've posted, I just don't have enough time in the day to do it all! But things are fabulous. Dan and I keep noticing amazing gains in my brain. It's profound, and exciting, and it makes me feel like I'm getting smarter and smarter and ready to take on the world. Even my energy levels are increasing! My comprehension is shattering old levels. I feel like I'm finally at a point where I'm as smart as I was before all of my brain surgeries, before that hematoma seriously damaged my brain. Dan's pretty sure I'm almost there as well. Maybe he's hesitant because he has an inflated view of my smarts back in the day. Works as a compliment in my world. But man, it feels really good to "get" things. My level of research is compounding; things are coming together. There are so many ways to kill brain tumor cells, and it's thrilling!

I haven't just been researching, and such, I also had one of my best friends from college come stay with us for a weekend. Then just a few days ago some of our NYC buddies came through on their annual NW stay. Talk about refreshing. I am so lucky to have such wonderful people in my life! This is exactly what life is about, isn't it? Friendship, family, love, connection. Considering I could have died during the aftermath of my first brain surgery with that hematoma debacle, then a year later when I had that grand mal seizure while driving highway 2, I'm incredibly lucky to be alive. There isn't a day I don't think about how lucky I am to be here!

Have you guys read Grain Brain? You know I love to read, and I get really excited to share. Even with that being said, it's rare that I start soliciting people to read a book. But, this is one of those times. The book, Grain Brain will change the way you look at food, and the way you look at your brain. It pulls together all of my various research and finally makes sense of everything I've read. I'm on my third read just to solidify everything. This is a book for everyone, not just tumor fighters, by the way. It's profound, and if you let it, it will change your life.

Yesterday I met with the most beautiful young woman: body, soul, spirit. She was recently diagnosed with a brain tumor so we met and talked about stuff (along with her mother, and her buddy, and later her buddy's husband). To prepare, I went back through some of my radiation reports. It's always good going back through stuff because you catch things. You won't believe what I found out. I'm going to break it down:

4/27/10 total complete resection (they got it all out)

10/12/10 small hyperintense area found per my medical records - ie: tumor (yet the doctors are telling me no tumor)

1/14/11 mild enhancement of nodular area according to my medical records (yet the doctors are telling me no tumor)

4/15/11 Radiation oncology nurse tells me I'm stable - no tumor, then the doctor comes in and tells me I've had tumor dating back to 10/10. They recommend radiation. I decline.

I look into other options. I try various supplements and other alternative treatments.

10/25/11 tumor has grown to 11 x 10 x 16 mm according to medical records

I try extreme diets and various supplements.

1/13/12 tumor shrinks to 11 x 9 x 16 mm, possibly accountable to scanning techniques
4/19/12 tumor measured at 11 x 10 x 16 mm according to medical records (hence tumor remains unchanged for six months)

To avoid radiation, I look into clinical trials across the country. I find Dr Linda Liau at UCLA and get an appointment.

7/12 I meet with Dr Liau
10/18/12 I have my second tumor resection - a total complete resection (she got it all out). I don't make it into her clinical trial, so I opt for private treatments (think $$$$).

After reviewing the subsequent radiology reports dating back to 10/18/12, according to my medical records, I have not had a new tumor mass grow. That is almost two years. The fact that the tumor has not grown back is a miracle. It's a miracle derived from my newcastle disease virus shots, my chlorotoxin, and my excessive various supplements. The pathology from my second tumor showed that it was more aggressive, with a higher Ki67 score, so technically, my tumor should have shown up at minimum three months after the surgery. So thank you body! Thank you Dr Liau. Thank you fate, and chance, and hope, and good fortune. And god? Whatever it is that seems to be working, thank you. I couldn't do what I'm doing without all of the help from my researcher friends, and the doctors, and specialists that respond to my ignorant emails looking for more information.

The reason why I shared a basic outline of my situation is because I wanted to illustrate the importance of getting your medical records, and at each appointment getting copies from the records department. Then file it for future use. Doctors have "acceptable" ranges of growth where they will call your tumor "stable" even if the tumor is growing. It's important to have transparency, and the only way to do that is to take charge on your own. I won't make that mistake again, and I want to share my story so that others don't waste precious time thinking they're healthy when a tumor is growing roots in your body.

Leaving you with a few fun pictures from our time with my college buddy Koontz. Had to take him to a Hawks preseason game, and take him sailing with The Mahars. All the sea life came out to say hi to the Texan: porpoises, gray whales, a seal, and lots of huge jellyfish. It was pretty magical.

Dancing Through Life

Oh you guys, I feel like such an ass. The other day I mentioned that cancer bloggers seem to want to reach out, and really help others, effectively implying that people who have cancer and don't blog don't have the desire to help others. What an idiot! Obviously that's not the case. People reach out, or help out in different ways. Some are communicators, others are fund-raisers (I love a good play on words), some are connectors of people, etc. Some, of course, are barely hanging in there and just need to focus on themselves to survive. And that's exactly what they should be doing. You learn quickly upon diagnosis that no one is going to save you, but you. So in order to help others, you have to put yourself first. Good god I am a fabulous foot-puter-in-mouther. With the bloggers from this past group in NBTS I found that correlation, of wanting to help other cancer fighters, but I didn't mean to isolate everyone else. That's been bothering me since I posted. I recognize that we all have our ways of contributing in this world. 

I hate it when I say stupid stuff, it makes me feel like a complete moron. So please forgive me.

On another note, my bud Jess was in town this weekend, the one who shaved her head with me when I was diagnosed. The one who immediately flew from Abu Dhabi to be with me. The one who has seen me at my worst (shaving my legs for me when I was unable, or even wiping for me because I was out of brain surgery and didn't remember how). Jess came to extend the birthday celebration. This year is seriously chalking up to an epic start! The older we get the more amazing the friendship grows. I assume it's like a good marriage where you both grow, but grow in parallel, separately, but with mutual excitement and wonder. I'm lucky to have her. She just gets better and better, and when I don't think she can impress me any more, she does again. 

We did yoga, and barre, we went kayaking, and picked blackberries; we cooked fabulous meals, and went down to the lake to play dominos. We watched movies, and laughed, and relaxed. She will be finishing her nursing degree in December from John Hopkins, and she practiced by dressing my wounds (three more bad moles removed). I trust her with my life, and most of all, my spirit.

Energy surrounds living things, you can feel it. Sometimes, when you leave a person, you feel exhausted, drained. They pull your energy and you feel zapped. Jess is a battery charger. Our energy is symbiotic. It's an awe-inspiring thing, of which I am extremely grateful. She has a way of knowing how to handle the crazy schedule of pills, and chlorotoxin treatments, but takes it all in stride. It's 30 minutes here (pill time) let's distract ourselves with a yoga video; 30 minutes there (chlorotoxin time) let's rest for a bit and put our feet up. Being with her is like dancing through life. Tedious things become fun; responsibilities become accomplishments.

Winking at Fear

Yesterday, I turned a year older. And, it has officially been 4 years, 3 months, and 25 days since I was diagnosed. I have had three brain surgeries. I have tried almost every brain tumor diet on the planet. I have gobbled hundreds of thousands of pills. I have researched. I have exercised. I have meditated. I've dodged seizures; I have endured them. They've injected shot after shot to boost my immune system, and to fight my tumor. I've done the high dose IV drips. I drop venom in my nose, and I swish it in my mouth. I've traveled the country, and around the world, to meet with doctors for second opinions, for surgeries, and treatments. All that, and so much more, and yet I feel like an imposter, like this isn't my life.

I got the email yesterday, a great birthday surprise, that I am included with five other bloggers to be posted on the National Brain Tumor Society website. As I read the other posts I felt like a voyeur, like I didn't belong. It's confusing because I relate to so many of the things that they wrote, yet, with others I have no experience: radiation, chemo. It's as if they were long lost family members; we had never met, but somehow I recognized myself in their faces. I loved the variation of stories, of perspectives, of journeys. The voices, although different, carried similar threads of hope, fear, frustration, gratitude, and determination. Everyone had gone through a lot, whether it had been surgery, or treatments, or a combination. But some of these fighters truly astound me with what they are conquering, what they're capable of enduring. I read the blogs yesterday but I keep coming back to reread them, trying to soak it all in. When I was first diagnosed I tried support groups and they were horribly depressing. In contrast, I'm finding that those who chose to blog about their experience aren't just wanting to connect, they want to help. They want to reach others, far and wide, in the hope that their experience will save another some trouble; to help connect the dots faster.

I am now 34 and it feels old. It feels solid, grounded in my situation, in my brain tumor reality. Kind of stuck. And in my life of contradictions, I feel removed, and floating. I was emailing, the other day, with my cancer buddy Lo, and we were recognizing how you get diagnosed, then everything stops. You keep swirling through scans, and treatments, and scans, and treatments, and year after year you get older but your world stays the same. You try not to, but from time to time, you can vividly imagine where your life would have gone, the road that was washed out before you. 

This year, to distract myself from my inevitable hamster wheel of treatments, at the recommendation of my buddy who did the same for her 34th year, I have decided to do as many things as possible (within reason) that make me uncomfortable, that scare me, that push my limits. I envision lots of nervous laughter, and triumphs. Probably a good deal of sweat, and awkwardness. Living with cancer/brain tumors makes it impossible not to live in some state of fear. More so than most. I challenge myself to open my arms this year to fear, to look it in the face, cock my head, and give him a wink, then jump.

So cheers to another year! This time, instead of cancer pushing my limits, always cancer driving my fear, or cancer making my life uncomfortable, I will take control and steal away some of cancer's power. I'm ready for a different type of fear, and a better adrenalin rush.

Here's a few photos from my birthday celebration, checking out Crystal Mountain, with Dan (including my attempt at a photo bomb). The year is already off to an exciting start... 

New Blog Page

Hey Guys, I've been working on this page for a bit. I'm trying to make it easier for tumor fighters to navigate my blog, and the tumor world. I'm pulling essential information to the front page of the blog so that newly diagnosed/newly recurrent tumor fighters don't have to sift through all of the posts to get pointers. I've copied and pasted my list below. If any of you tumor fighters (or anyone in general) have suggestions, I would really appreciate it. I know that I wish I would have had this information when I was originally diagnosed, it would have saved me a lot of trouble, headache, and disappointment. That's what I'm trying to prevent for others.

What to Know About Brain Surgeries

This is a list-in-progress of things I've learned throughout the past few years of fighting brain tumors (feel free to add suggestions in the comments section):

• You want a neurosurgeon/oncologist that is incredibly familiar with your specific diagnosis (subtype of tumor, molecular abnormalities, etc.). 
• You want a neurosurgeon that performs 300+ brain tumor resections a year.
• You want a neurosurgeon that is actively involved in clinical trials for your specific diagnosis/pathology. 
• Don't be afraid to email doctors, or tumor fighters with websites/blogs to ask questions. Especially if you find a promising clinical trial, look for the lead doctor's name and seek them out and ask questions. Doctors that are conducting clinical trials are very passionate about their work and are happy to help.
• After your initial MRI (with diagnosis) but before your surgery, your doctors should require a fMRI to make sure that your tumor isn't located in a delicate area of your brain.
• What is a fMRI? Click for information.
• If your tumor is located in a tricky area, the doctors may request a partially awake surgery to keep your healthy brain in tact
• What is a Partially Awake Craniotomy? Click for information. It sounds scary, but you don't want to lose any of your healthy brain, because once it's removed you can't get it back. Depending on where your tumor is growing, if your neurosurgeon doesn't map out your brain, and do an awake surgery when needed, they can cause severe damage to your language areas, your movement, heck, it could really damage you for life.
• If you have a low grade glioma, or doctors aren't sure, they should request a F-FDOPA PET scan to determine the mass. F-FDOPA PET scans are only available at top brain tumor centers. If you ask for a F-FDOPA PET scan and your doctors aren't familiar, or if they don't have the capability, ask for a referral to a center that does. You may have to travel for it, but trust me, this is your brain. It's worth it. This is especially important for recurrent low grade gliomas. A F-FDOPA PET scan can determine whether an area on a MRI is showing scar tissue, necrosis, or if it is active tumor growth. That is imperative when doctors are wanting to do another brain surgery, or are pushing for treatments like radiation or chemotherapy. You want to make sure that you truly have a tumor growing in your head before you damage your body. I have heard of patients going in for a second brain tumor resection only to find out after the fact that the image on the MRI had only been scar tissue.
• What is a F-FDOPA PET? Click for information. ("F-FDOPA activity may identify tumor not visible on MRI")
• Before you go in for surgery ask for your tumor tissue to be flash frozen instead of being put in the standard paraffin wax. That will allow your tissue to remain viable for immunotherapy treatments in the future. Also, ask that they don't use your tissue for testing, that it remain in tact.
• What is tissue banking? Click for information. 
• My most recent tumor is being banked at UCLA. It was flash frozen. It's a miniscule amount (0.17 grams compared to the 2 grams necessary for a DCVax vaccine), but as science progresses less and less tissue will be necessary for personalized tumor vaccines. A little bit is better than none. And if your tissue is stored in paraffin wax, which is the industry standard, it is useless for immunotherapies. 

Okay, that's all I can think of for now. Please leave comments with the things I've forgotten, I appreciate the help. This list is for the sole purpose of helping other brain tumor fighters. We're a small group, and I know that I've learned a lot from my peers.

Cue The Music

Recently, I was invited to join a group of bloggers as an ongoing roundtable for brain tumor patient issues. When the email popped into my inbox, I was surprised, and honored to be included. Over the past four and a half years I've corresponded with many brain tumor fighters, and family members of fighters; a few times I've been solicited to endorse various products (which I've turned down - ironically they were mostly pharmaceuticals), but I had yet to be invited to submit a post on a specific subject regarding brain tumor patient care or patient issues. I am flattered! The deal is that I submit my post and then out of all the submissions the National Brain Tumor Society will choose a few to be featured on their national website. I don't know if that excites me or terrifies me, but I do love to write so I figured this will at minimum be a fun homework assignment, a good challenge. The topic: What symptoms do you think should be candidates for therapeutic drug development?

When I read the topic, I slouched down, disappointed. I was hoping for something else, anything else, that I could write organically and passionately about. The tricky part? I don't like to take drugs. (Which, humorously, will probably bump me out of the running of getting on http://www.braintumor.org/.) But what do I do? I wasn't about to all of a sudden flip flop my stance just for the chance to be published. At least, I didn't think I would. But as I started really thinking about drugs, I remembered my lorazepam prescription which as been a life saver. Possibly even literally. Lorazepam is what I take as I feel an aura, the premonition of a seizure, coming on. It effectively mitigates my seizure issue, stopping my seizures in their tracks. It allows me to live a semi-more-normal life. So, although I don't like to use medications, I realize that there is definitely a place for them in my life. Not only is there a place, I actually need them.

Even though the idea of taking more drugs is unappealing, I acknowledge that it is in my best interest to keep my mind open. My hesitation as been due to the traumatic side effects I've experienced from the various drugs prescribed for my brain surgeries and seizures. Sure, sometimes they were minimal and worth it, but most of the time I felt like I couldn't win, that I was stuck in some sort of medical purgatory. I've dealt with horrible acne of all kinds, moodiness, weight gain, lethargy, even thoughts of suicide - all from taking those tiny little pills. Side effects are no joking matter, sometimes they're even worse that the symptom you're trying to alleviate. So, anyway, as I've digressed, what symptoms do I think we need more drugs to combat? Huh. Tough one. I have to scan back to my situation: exhaustion, memory loss, cognitive issues, word-finding issues, extreme difficulty handling changes in routine, seizures, nerve damage from surgery, vertigo, brain pain/headaches, scar pain, sensory defensiveness or overload. I can't even think of the other random symptoms I deal with. It has all become a sort of blur that is my life.

But if I was to hope for a miracle drug that could evaporate one or a few of my symptoms, a magic pill that would help me get back to normal, that ever elusive state that we remember fondly - the time before diagnosis - I would hope for something to poof away my exhaustion without causing a seizure. Or I would poof away my brain pain and headaches. Ultimately, I wish I could poof away all of it so that I could run free like the happy little squirrel that I am, but I know that it's impossible. I can't unexperience this brain tumor life. I am forever changed. It's a shame that we can't unknow things, or unhave specific experiences. So, since I will most likely never be able to take a pill to poof all of the symptoms of my tumor, and my brain surgeries, I do wish for something that would give the illusion of health, and would provide a more enjoyable day-to-day life. If I didn't experience scar pain, screw pain, incision pain, and headaches in general or if I didn't experience such drastic exhaustion on a daily basis, it would be a great improvement in the quality of my life. It would allow my brain to heal and rest, and probably assist the recovery from my cognitive issues, even lessen my seizures. All this stuff has such a domino effect. And if the side effects were minimal, I might just get up and dance about it. Oh who am I kidding, I already started wiggling in my chair at the word dance (cue C&C Music Factory, "Everybody dance now..."). Ultimately, nothing is going to keep me down for long, not a headache, or complete exhaustion. I won't wait on a pill to live my life, but I'm not going to lie, the option sure would be nice.

The Issue of Supplements During Treatment

The information about whether or not to take supplements during treatment is confusing. The vast majority of oncologists say to avoid all supplements, especially anti-oxidants, during treatments, but I think that's a shortsighted stance. There's a plethora of research studies showing the benefits (and sometimes the downfalls) of adding a few supplements to your protocol. There are many oncologists that are anti-supplementation, but then there are lots of cancer nutritionists, and other alternative specialists who are pro-supplementaton during treatments. Not knowing who to trust, we often end up avoiding healthy supplements that can act synergistically with our radiation/chemo/etc., or we pick the wrong supplements which can lessen the cancer killing effect of the treatment. But how do we know what to do? Who do we trust? We don't have the time, or often the brain power, to sift through everything when we're dealing with a new diagnosis, or the progression of disease. That's why I was very excited to see that Ben Williams, Ph.D. updated his research on the issue of supplements during cancer treatment. You may recognize Ben Williams, Ph.D. as a glioblastoma fighter who wrote the book, Surviving "Terminal" Cancer. He's an incredible resource who is very active in the brain tumor world. This guy knows his stuff. His paper is 42 pages, which may seem overwhelming at first, but when dealing with such a complex issue you really do want exhaustive information. This is truly a fabulous resource. You can access the document below, just click. Enjoy.

The Role of Supplements (including Anti-Oxidants) in Cancer Treatment

By

Ben A. Williams

The Glass Box

I hate saying this. I hate that this is the situation; that this is how I feel. But, this is a tumor blog and it's where I go to share my journey, so here goes nothing....

Tonight I went to a couples baby shower. It was at an understated, yet trendy bar full of friends. There was laughter, and hugs, and back slapping, and smiles. The celebration was for a specific husband and wife, but half of the women there were pregnant, so by default, it was a celebration for several along side. 

I got the chance to catch up with my beautiful friends, which was lovely, and yet painful. I even cried on the drive home, which is incredibly rare.

Throughout the evening, as I got caught up with people's lives, I couldn't help but notice the disparity between who I would be if I hadn't been diagnosed (a career, the ability to drive, financial stability, perhaps children). As I listened to people speak, with a smile on my face, I felt myself mourn for my old self. I mourned the person I could have been, of who I was on track to be.

I love watching my friends deliriously happy, so excited with their life's journey. But it's also confusing. It's uncomfortable that being around friends makes me both happy, filled with joy, and yet regretful, deeply saddened. I hate that I feel that way.

Currently, I am stuck on a hamster wheel of treatments and won't be finished for years. My life is lived in 4 hour increments, and I should be thrilled by that luxury since it implies that I'm doing well. But it is also extremely taxing. I can handle the stress when I live in my bubble, when I bound around the house being silly with Dan, or off jogging with Emma. It's times when I'm social that hurt too much. That make me feel isolated within a crowd. I can't relate. It's as if I'm in the room, but surrounded by a clear glass box. Alone. This girl who used to be incredibly social, even labeled vivacious by some, has morphed into an introvert. A person more comfortable by herself.

I am very grateful to be alive, please don't get me wrong, but I don't know if I will ever get used to living in limbo. I am putting all of my energy into these treatments, all of our money, and energy, and if they don't work then I will have wasted precious time that I could have spent crossing stuff off of my (yet to be written) bucket list. 

I hate that I'm so self absorbed that I couldn't even completely enjoy such a special occassion. Lots of "hate" in this post. I hate that too.

Last Minute Cherry Sale (Short Window)

Sorry for the short notice, but I just received the call that cherries will be delivered to my house this Thursday (July 24th) and available to pick-up that day, or the following day, Friday (July 25th) any time. 

The cherries are by pre-order only and I need the numbers by the end of the night tonight. Here's the info:

Organic Bing Cherries

1 bag = 1.25 lb = $7.50

If you or some friends, or coworkers are interested, please send me your orders. You can pick them up at my house anytime Friday day, evening, or night. If you can't pick them up until Saturday, I'm sure we can work something out.

Thank you for the support, and I'm sorry this is such short notice!

Love,

Jess

PS Email me if you have questions or want to place an order. (jessoldwynttf@gmail.com)