Wednesday, December 31, 2014

SHAPE Magazine Interview

Over the holidays, I was contacted by one of SHAPE Magazine's associate editors about an article she was writing about the language we should use when we talk about cancer. If interested, you can read the article below. The hard part in being interviewed is that things always come up later, things you forgot. When I talked to Dan about it we discussed how in the past I used a lot of "war" terminology. I always used to feel like I was in battle, that my body was waging a war against cancer. I have since changed my view. It was too exhausting to think that I may be "fighting" for the rest of my life. I knew that I didn't have the stamina. Fighting is exhausting. Now I see cancer as unhealthy cells that may be in my body. I see them as damaged, bruised, weak. But I also believe that my body can heal the residual cancer cells in my body, or perhaps turn their activity "off", with my immune system's help. I don't completely know if that's a scientific fact, that cancer cells can differentiate into healthy cells, but I like to think it's possible.

Regardless of how I look at it, we all have different perspectives and they're all right. It's hard enough as it is to imagine us all having to feel the same way. I think that whatever terminology that's comfortable to you is how you should describe the experiences on your journey.

I was shocked to be contacted, and it was an honor to be interviewed. Happy New Year you guys. I love you all.


Monday, December 15, 2014

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.)

http://www.survivingterminalcancer.com/






Monday, December 8, 2014

Pick Positive

Wow, life has been in the fast lane lately, I havent even found the time to post, but here I am. I'm back!

As I rode the train to the airport this morning I thought about how much my life has changed. That it was put on hold, due to the tumor, causing a necessary pause. A scramble then a freeze. And now, like the thaw from a very long winter, my leaves are unfurling, and I may even flower this year. Do I still get scared? Hell yes. Every day. I have all the same cancer fears, but the stubborn voice in my mind says, "Don't borrow trouble." I want to live until I can live no longer. I want to laugh, and dance, and read, and hug, and learn, and share, until my last breath. Life is so freaking fun I can't even stand it. And people are so nice. Why focus on the negative? It's so boring. 

So now I'm at the airport meeting my buddy Linden. I think I've mentioned her before, but can't remember, she's fighting an AA3. We're headed to San Fran to check out a new cancer research facility. Although, I don't know if I can talk about it much yet, as it isn't up and public. So we'll leave it at that. Suffice to say that there is more hope out there than people can even imagine. So keep fighting, keep smiling, keep those negative voices down. 

It's another beautiful day.


Tuesday, November 25, 2014

Out of The Shadows

Ugh, the dread in my body in having/needing to write this post has been weighing on me for quite some time. Like months. How embarrassing! Why can't I be fearless? Why didn't I just start talking about it from the beginning? That way there wouldn't be a buildup. I avoided it because I didn't want to deal with people's opinions. I hate bringing up controversial subjects (unless it's face-to-face where there's an open dialog), and I hate to be judged - which is weird because I have been taking control of my health, no matter the cost, definitely to the chagrin and disapproval of several of my original doctors.

I've been dragging my feet because I don't know where to start. And there are so many details as to what helped me make my decision. I know that I can't include them all because it would be exhausting, and verbose, and complicated. I'm nervous because I feel like I'm not going to be able to really explain myself. Suffice to say that I have joined private groups, and read the research, and talked to, and met with, 40-50 cancer fighters who have shared their private stories about personal cures and cancer stabilization. What is it, you ask? It's hemp oil. Also known as Phoenix Tears, or Rick Simpson Oil. You can also just call it medical marijuana or marijuana extract processed into an oil. There's a lot of names out there, and they're not all exactly the same, but they're pretty similar. I have several cancer friends who are using it in very large doses (1-2 grams a day) with dramatic results, and I have other friends who take it in small amounts and they're still getting results.

Does it work for everyone? Unfortunately not. But, as a person who lives in a legal state, I figured (after researching, and talking to fighters who use it as treatment) I might as well add it to my protocol. You might think I'm crazy, or that it's overkill, since I have now gone two years without tumor growth, but I'm sure you've heard me mention the fact that tumors are crafty little fellas that weasel their way back even during treatments. It's almost as if you're never safe. The moment you think you're golden, it'll rear its' ugly head.

I'm sorry that I'm not going to thoroughly explain the facts of my decision, but I figured at least I would throw it out there and you can research for yourself to decide if it's a legitimate form of cancer treatment, or seizure treatment. Ultimately, I am embarrassed that I was hesitant to share. People are constantly telling me how surprised, and grateful they are about my willingness to open up, but everyone has their limits, including me. I would have been perfectly fine keeping this private. It would have kept me from being judged, which is incredibly appealing, but you know what? This isn't really about me. This is about an amazing seizure and cancer fighting treatment that I think everyone should have access to. (I mean, come on, why else would they be doing cancer clinical trials with it!? It's because there's something legitimate about the plant's properties.)

When I started, I was doing the Rick Simpson protocol. You start with a dose of the oil in the size of a grain of rice three times a day, for four days. Then you double the dosing for the next four days, then you double again and treat for four days, continuing the schedule of increased dosing until you hit a gram per day. I worked up to three grains of rice three times a day. It was awful. I hate feeling high. It made me unable to function. But, it was during the month before the MRI and I was really scared about the scan, so I tried to dose up as fast as I could. What I found was that, although I hated the "high" feeling, it was magic for my anxiety (duh), and stress (duh), and sleep (duh), and seizure activity, and skull pain which is invasive, and constant. I don't really complain about my pain because I feel like dwelling on it exasperates the issue. But it is real, and never used to go away, and the fact that medical marijuana mitigates those issues is amazing to me. It's not a miracle, and it shouldn't even be a surprise because there is tons of literature and research to sustain those claims. It's not just my word. As an aside, the day that I had my seizure, I missed two doses of oil because I wanted to be 100% with my wits about me as I was waiting for the results of my MRI. I wanted to be able to process the information in an objective way in case we needed to make major decisions.

I buy the oil from a co-op that rigorously tests their products, and it comes in a 2:1 ratio of CBD:THC. I currently work with a 48% CBD to 24% THC, but I want a second oil with a 0.3 % THC level because then I can take as much as I want throughout the day (don't forget that the CBD doesn't have psychoactive effects, and it's the major seizure stopper). That's the goal, to be able to dose all day long to prevent seizures. I have since stopped taking it during the day, instead I dose at night, a few hours before bed. Ingesting the oil orally takes three hours to get into my system, although for others it's different. I would still take the higher THC oil, I would just continue to ingest that specific oil before bed to avoid any unwanted side effects.

Here are two wonderful videos that I hope you will take the time to watch. They explain a lot:



I feel crazy saying what I'm saying about medical marijuana. I believed a lot of the negative hype about weed, but as a gardener, researcher, cancer fighter, epileptic, and take charge kind of woman, I have drastically changed my stance on marijuana. I am in awe of it. And I feel like people should have the right to grow and ingest a plant. I realize the complications of teens, and recreational use, and impairment while driving, etc. but I'm getting very sick of people telling cancer patients what they can and can not do with their bodies. We're forced into toxic treatments that don't have acceptable success rates. You guys know me, I follow the Hippocratic Oath of, "First do no harm." Some people debate on whether or not medical marijuana causes harm, but it is not deniable that radiation and chemo are much more destructive than hemp oil. No one has ever died from it. You can't overdose. An overdose of hemp oil is just sleep. That's it.

I have friends in states across the country who are fighting active stage four cancers and they deserve the right to try whatever they need to survive. Period. That is why I am sharing my story about my medical marijuana use. My friends don't deserve to die just because of where they live. They should get to have access to the same life saving treatments that I do. They should have the right to improve their quality of life, to abate their pain, and sleepless nights, and overwhelming anxiety.

I feel like I'm leaving out so much, and I'm very nervous to hit the "post" button. It's scary to put yourself out there to be judged, for people to have opinions about the choices you make in your life. But it is important for me to be an advocate, to step out from the shadows, and be honest about the incredibly wonderful effects that marijuana has had on my life. No one could be more surprised than me. I am exceedingly grateful that I continued my research and was able to keep an open mind so that I could benefit from this amazing plant.


Here are a few teasers, but please do your own research and decide what you think.

Multiple Cancers
"Cannabinoids could provide unquestionable advantages compared to current antitumoural therapies: (1) cannabinoids selectively affect tumour cells more than their nontransformed counterparts that might even be protected from cell death." - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1617062/

Breast Cancer
"Analyses of the tumors revealed that cannabinoids inhibit cancer cell proliferation, induce cancer cell apoptosis, and impair tumor angiogenesis." - http://www.molecular-cancer.com/content/9/1/196

Brain Cancer
"Results obtained by our group and others during the last decade have shown that THC, the main active component of marijuana, reduces the growth of different types of tumor xenografts including gliomas."- http://mct.aacrjournals.org/content/10/1/90.full

"Both cannabinoids (THC & CBD) can reduce cell numbers by inhibiting cell-cycle progression and cell growth as well as by triggering apoptosis and engaging autophagy (19), and are also antiangiogenic and antimigratory (15). The two compounds have also been combined in a preparation that is currently licensed to treat multiple sclerosis, which is now undergoing trials with glioma." - http://mct.aacrjournals.org/content/early/2014/11/12/1535-7163.MCT-14-0402.full.pdf+html?sid=c0dd7be7-3079-4308-96f2-3393d5e28e62

Tuesday, November 18, 2014

Carrageenan Conspiracy

This is random, but I'm really excited so I have to share. To begin, I have to preface that I am addicted to ceremonial grade matcha green tea (it's shade grown green tea leaves ground or milled into a fine powder). I drink a glass or two, or three each day. It's known as one of the most powerful anti-cancer compounds, and it is my crack. No kidding, when I started drinking it regularly, about a month or two ago, Dan was like, "What's the deal, you are even goofier than normal. And your energy is insane." I told him my secret, and he laughed. But laugh all you want folks, it's the most amazing mood booster I've ever had. Sure, caffeine gives you energy, but a boatload of antioxidants mixed with just a little caffeine (it's a natural byproduct of the green tea) is the way to go. Hence the matcha. A good ceremonial grade matcha smells like grass, and has a vibrant green color, and as you drink it you know you're giving your body exactly what it wants.

Now, Dan can't stand the taste, and I admit I don't love it, but I have been making it with a few dashes of hot nut milk which creates a luxurious flavor and texture. I had been using unsweetened almond milk, but then I remembered that carrageenan, which is in the majority of nut milks (among other products), is really bad for you. Like really, really bad. Cancer causing bad. So, I just pulled up a couple of notes on carrageenan as a teaser (hopefully it'll open your eyes if you weren't already familiar)....

"Carrageenan predictably causes inflammation, which can lead to ulcerations and bleeding," explains veteran carrageenan researcher Joanne Tobacman, MD, associate professor of clinical medicine at the University of Illinois School of Medicine at Chicago. She says the food ingredient irritates by activating an immune response that dials up inflammation. Her previous work showed a concerning connection between carrageenan and gastrointestinal cancer in lab animals, and she's involved with ongoing research funded through the National Institutes of Health that is investigating carrageenan's effect on ulcerative colitis and other diseases like diabetes. (Prevention Magazine)

That's the crazy thing, inflammation feeds cancer. Inflammation feeds disease. And what I find the most disconcerting is that our government knows that carrageenan is cancer causing, and cancer promoting, and they don't limit its' use. Or ban it. There is all kinds of research being done at the National Institute of Health, which is a US government organization, proving the dangers of carrageenan. They know it's bad. They know it's a killer, and yet our government doesn't protect us.  

I have learned the hard way that I have to be responsible for my own health. That no one is going to fix my cancer, that no one person has the answers or ability to heal me, but I can be an advocate for myself. I can read the fine lines and hold myself accountable. I can not expect our government to protect me. It is my responsibility to investigate what is good and what is right for me and my body. And that is what led me to create my own nut milk yesterday. And holy cow it is delicious! And it's easier than you think.

Ingredients 
1 c raw cashews
4 c filtered water
1/8 tsp sea salt
dash of vanilla extract (to taste or omit)

1. Soak the cashews overnight or at least for 4 hours
2. Rinse the cashews
3. Toss the cashews, two cups of filtered water, the salt and vanilla (if you chose to add it) into a quality blender (I use a vitamix) 
4. Turn the blender on to low and slowly increase speed. Blend until it's nice and frothy, and thick. At this point you can add part of the final two cups of water, or all of it. I like my milk to be thick and creamy, similar to whole milk or cream. If you're more into 1% or fat free milk, add in all four cups. Blend it in nice and good, then pour it into a sealable container for the fridge. Note: The milk will further thicken once in the fridge.

I love this nut milk because, unlike almond milk, you don't have to strain anything, or remove anything. You're using the whole nut, you don't remove the fiber. The entire recipe is so easy it's ridiculous! 







Although in 1972, the U.S. Food and Drug Administration considered restricting dietary carrageenan to an average molecular weight > 100,000, this resolution did not prevail, and no subsequent regulation has restricted use. Because of the acknowledged carcinogenic properties of degraded carrageenan in animal models and the cancer-promoting effects of undegraded carrageenan in experimental models, the widespread use of carrageenan in the Western diet should be reconsidered. (US Library of Medicine National Institutes of Health)

I'm not trying to preach, I just wanted to share because I'm fearful about what's happening to our bodies, and I care about you and I care about people in general. It's amazing how important it is to read the ingredients in our foods. It's especially important to research ingredients if we don't recognize them. I mean, what the hell are we eating these days?!? We're eating non-foods. We're eating chemicals, and it can't be good for us. It's not natural, but it's hidden in our natural foods - like almond milks. People think that they're helping their bodies by choosing a healthy milk alternative, but who knows, perhaps with the carrageenan the nut milk is just as detrimental as hormone filled cow's milk. I'm digressing, just ignore my little rant. I rant because I'm frustrated that there are non-foods allowed in our food supply that cause and promote cancer. It's a bunch of crap. But don't take it from me, you can make your own decision on what you think. Regardless about whether or not you agree with me, just play around in the kitchen and try this delicious recipe. I really think you'll like it. :)


Sunday, November 16, 2014

How do we celebrate?

I never thought I'd feel this way. I never thought that I would use these words, and for good reason. Doctors don't use the term "remission" for brain cancer, because "it always comes back". At least that's what all of my doctors have said (minus my neurosurgeon at UCLA, I haven't heard her speak in absolutes). But today, I feel like I'm in remission, that I'm cancer free. I'm sure I still have cancer cells in my body, like we all do, but something feels different. I feel lifted, and whole, and healed. Does that seem crazy? It feels crazy, but it feels right, like I'm on the correct path with the appropriate protocol.


 
I don't want to jinx myself, so please knock on wood, but for the first time since diagnosis, I feel human. I feel normal. I feel like an epileptic (that may never change), but not a cancer patient. I'm continuing all of my current treatments, but now I'm doing it by choice not out of duty. And I know that this shift alone will do wonders for my psyche.

I never thought that my MRIs would get pushed out to 6 month intervals. It crossed my mind once or twice, but it was like imagining a unicorn. A wonderful thing to smile about, but not a reality. But the world tricked me, see - unicorns DO exist, and I love them! 

I keep thinking about this insane tumor diagnosis and how much it has changed my life. I have gone through so many wild things, like the awake brain surgery, or the hematoma that caused major brain damage, forcing me to relearn everything from using a fork, to learning how to run again, and read again, and regain my vocabulary. There were times when I couldn't even understand concepts. My IQ was ridiculously low. I remember undergoing hours and hours of testing only to be told by one of the top neuropsychologists at University of Washington that I would never recover and read again, that I would never be capable of high level thinking or processing. I remember sitting in that same doctor's office with Dan as we went over the results, as tears streamed down my face. Man how things have changed. Not that I'm that smart, but I'm more than getting by. 

So what do I do now? How do we celebrate?!? For starters, I have decided to start training for a half marathon. I haven't run a half marathon since before I was diagnosed, and have been hesitant to push myself too far because I was afraid of seizures, exhaustion, running down my immune system, elevating my blood glucose for long periods, you name it, I was scared of it. But, I was very inspired while watching the Iron Man coverage this weekend, and I reminded myself that life is short, do what you enjoy.  So I'm starting with a half marathon in January, and my other goal is to do ChelanMan in July, the Olympic length triathlon. I don't know if you guys know this, but when I was diagnosed, I was supposed to participate in the Olympic ChelanMan that summer (I was diagnosed in April) but obviously, that didn't happen. I feel like things are coming back around full circle. I honestly never thought this would happen. It would have been too much to hope for - to live a normal (ish) life. 

So if anyone wants to join me for ChelanMan (you've got several months to decide) please please think about it. Let's get nuts. Let's get silly and have some fun and sweat, and laugh, and feel alive.

Wednesday, November 12, 2014

UCLA MRI Results!

I just received an email from my doctor at UCLA, here's an excerpt: 

"There is no evidence of tumor recurrence/progression.  So, we
have no new recommendations at this time, other than to get a follow-up
MRI scan in 6 months."

WOOT WOOT! Heck yes!! You guys, we're doing it!!!!!! We have dealt with recurrence before, but we came back stronger, better informed, more diligent, and right now we're enjoying the payoff. This lifestyle is a lot of work, but damn if it isn't worth every ounce of effort!

Thank you for the continued support, I am incredibly grateful for all of the help along the way! This feels like a huge step toward my #1 goal in life, which is to get the opportunity to grow old, and wrinkled, and grey. That's all I want in life is to get to ride that journey. And these results move me closer! 

I still can't believe this is happening. A six month window between MRIs is a very big deal. It's by far the widest spread between scans that I've ever been allowed to do.

Sometimes it's too much to think that I'm going to be okay, that I could beat this tumor stuff. I'm often only able to "hope" for things. I'm never confident because I feel it's important to acknowledge that people are often at the mercy of fate, or timing, or luck, or God. Whatever you want to call it, in this moment, it has fallen on our side, and I'm grateful to be basking in the glow of good fortune. I've been on both sides, and my fate will no doubt oscillate throughout my life. I am just so grateful, I can't even put it into words. We work so hard, my whole family, and it feels wonderful to get great results. You guys, we're doing it!!!!! YESSS!! 

Still Waiting

Still waiting to hear back from UCLA's tumor board. My doctor was out of town last Friday, and she wanted to review recommendations before addressing patients, so my results were postponed. Then I gave Monday for them to catch up, and called Tuesday, but of course it was Veterans Day, so the offices were closed. Now it's Wednesday, the day of the week that UCLA's tumor board meets, so I'm sure the offices are backed up and crazy.

I'm still just as nervous as before, but very hopeful that when we do hear my results, everything will be fine. In fact, maybe I'll call right now and see what I can find out. The waiting is the hard part. Living with cancer, and scans, is an incredible lesson in patience. :)

Thursday, November 6, 2014

Flipping The Switch

Oh you guys, it's almost here, we should know tomorrow about whether or not UCLA believes I'm "stable" or whether they'll want me to fly down for another Dopa PET. This is such a weird life, just saying those words. Do you ever find yourself stopping your gait, turning your chin up to face the sky, and just smiling with pure joy about how magical life is? I can't explain it that in this moment, this moment of uncertainty about the direction of my life, I find it amazing how deeply my soul is constantly overflowing with gratitude, and happiness, and wonderment. Half the time I just laugh at myself, at how annoyingly happy I am. It's absolutely ridiculous, yet I love it because I know what the alternative would be. I'm still logical, and analytical, and I still have bad days, or bad moments, but somehow I have a serious constant influx of endorphins.

Even though I can't really explain it, I do know that this inner joy, this ability to find silver linings in even the most dull, dark places, is the biggest gift the world has given me. I wish it was something I could bottle, wrap with a bow, and give as gifts. I hadn't really thought about whether or not my attitude is "normal" for a person with my diagnosis until I kept getting private emails from patient's families and friends, from people worried about brain tumor fighters who want to give up, are depressed, or are riddled with grief. Some have more progressive disease, others have less, but ultimately it doesn't matter how serious a situation is, because the power comes from whether or not it debilitates that person.

It hurts me physically when I hear each story, because I know that there is nothing I can do. I try to share my story, or give tips on how I trick myself into being happy even when I'm scared, but ultimately, happiness will always come from within. No one else can fix it. I've had my share of terrible times, and of course I've already had one recurrence, but instead of that overwhelming me, or derailing me, I used it to get stronger, to encourage myself. I used it as ammo. It's those silver linings that keep you going, that trick you into trying. Like this morning, I fried up two eggs for breakfast, and just the little detail of using my mom's old orange enameled cast iron skillet - her favorite, that she passed down - reminded me all about what my mom has given me, everything she has done, and continues to do. I think about the last time she hugged me, the last time she and I laughed together. In a series of seconds I'm filled with love, and it's escalating, it's like a catapult. I'm engulfed in gratefulness, for my life, for the gift of resilience, for the gift to be here on Earth, for the gift to experience all of this beauty, and love. It's easy for me to be happy, it's a place I go to often, I know the path by heart.

Was I always this way? Was it always this easy? No, it hasn't been. I've been depressed before - even needing anti-depressants, but it was long before diagnosis. But from the moment I was slapped in the face with the news of my brain tumor, life instantly became "real" and I internalized the fact that this isn't a trial run. This is it. This is all we've got. We've got this one life, and in any moment we can decide how we choose to interpret what's happening around us. We have the choice to be whomever we want to be. And we can choose how to best handle each situation. Those facts, the facts that we have great control over how we view the world gives me great strength. It flipped a switch in me, and I am so glad it did. Now I just want to love people, and laugh, and have great conversations, and hug people, and help others in any way that I can. (God, am I just obnoxious?)

I don't know why I'm so fortunate in life, or why I'm still here - a lucky one. I don't know how I became so blessed with all the wonderful people in my life, but I don't take it for granted for a single second. I know it can all be taken away in an instant.

Okay, I'm off to work more on an art piece for friend....






Tuesday, November 4, 2014

Surprise!

Who is the sweetheart that sent this package?! It didn't come with a note....


Regardless, THANK YOU!!!! :) What a wonderful thing to do! 

Sunday, November 2, 2014

WPIG Annual Art Auction

Good Evening! Thank you for all of the kindness, and patience as always during my seizure hiatus. You guys are all so wonderful!!
 
Seizures are down; I'm doing good. The other day, you might notice, I created a new box in the upper right hand corner of the blog. It tracks my progress avoiding attacks (seizure attacks, not maintenance man attacks - ha!). As Dan would say, I always have to have a competition. I love to see if I can break my own records. It's really just a mind game, a distraction. And, when you break your records, you have something to celebrate. :)

I'm disappointed that I had those two seizures on Monday; am I ever going to be free? It's really not that big of a deal, the tumor is obviously the main issue, but man, wouldn't it be nice to not have to worry about having a seizure? I hate it when I can't control my body, or my mind. And it's more than hating the loss of control, it's literally terrifying. You don't know where the energy of your mind is escaping to, but you can't access it. And seizures aren't harmless. Not only can and do they damage your brain, I also know brain cancer fighters who have died from their seizures. Whatever the hell they are, they're nothing to mess with. Like the power of the ocean, it's important remain reverent.

I have a healthy respect for seizures, but I won't live in fear, so last night Dan and I went out with friends to the Women's Philanthropic Investment Group Art Auction. You may have heard me mention it before; I donate a piece of art every year. This year supported YouthCare, to help homeless teens. I wasn't that familiar with the organization before, but by the end of the night I was really impressed. The founding story, and what they do is absolutely amazing. It didn't hurt that it required me to get dressed up and out of the house to see bunches of our friends, but it was also exhausting, and I'm afraid I picked up a bug from the crowd. My throat hurts like nobody's business. Dang it.


In general, I feel like I'm getting better and better about bouncing back from seizures, and because of my trip with First Descents, I take calculated risks so that I am out living life. I may even say that I might be getting the hang of this tumor/seizure life. Knock on wood! I feel like I probably just jinxed myself. I hope not.

I can't remember if I mentioned it or not, but the final MRI results, which is UCLA's review, will be available on this Friday. Fingers crossed they agree that the tumor is stable. Truthfully, I panicked when I read UW's radiology report where they measured my tumor area at 4.1 x 1.2 centemeters. I never want them to measure anything. It's just like how you never want a doctor to call you back quickly after going in for general testing.

Monday, October 27, 2014

October MRI Results

Of course, of course, of course, the day I go to get my MRI results, I have a seizure. (I was at 4.5 months seizure free. DAMN IT.) In fact, not to be outdone, I had two in quite close succession (a window of about 60 minutes. And it took forever to come back down from that short circuit. So stupid. It was humiliating, too. I was in the shower, and started feeling "off". I got out but was confused. I was walking back and forth in the house trying to figure out what what happening, all the while, curtains are peeled back throughout the house and I'm a drenched cat, totally naked. I couldn't think to dry off. Or manually get clothes on. Hopefully I didn't terrify pedestrians walking by. In those moments it's too difficult to even function. And the more you do the more it spurs increasingly aggressive seizures. So I made my way to the bedroom snatched a phone and hit redial. Lucky my mom answered. All I could say was, "mom, I am alone. I'm having a seizure. It's worse than normal. It's going to get bad. I may lose consciousness. Please call Dan to come home." Then I hung up. Once in bed I couldn't move, I was paralyzed. I couldn't feel my right side, then came the painful throbbing. It started in my right arm, and spread up to the brain, then it flushed out from my right hip until my whole pelvis was throbbing in pain. I had never had effects on my pelvis, so that's a new seizure detail. I also don't think I've ever had two seizures in one day. Not a record I wanted to break.

I still made it to the hospital this evening - just before they closed - with Dan's help, to get the radiology report. I had to.

Here it is:

Findings:
There has been prior left frontoparietal crainiotomy for tumor resection. A rim enhancing collection is again seen adjacent to the resection site. On today's study this measures approximately 4.1 x 1.2 cm. This is stable in size compared to previous. No new areas of enhancement are seen. There is unchanged surrounding FLAIR signal abnormality which extends to the ventrical margin.

The midline structures are central and the ventricles are stable in size with minimal ex vacuo dilation.

Impression:
Stable resection cavity and surrounding FLAIR signal when compared to multiple studies. No new enhancement is identified. 

It all looks pretty good to us, but of course we need the final analysis from Dr Linda Liau's tumor board at UCLA.

I would prefer that they didn't have anything on the report to measure (ex: 4.1 x 1.2 cm). But hopefully it's just innocuous. 

For now. I must rest for the remainder of the week. I am going on total and complete hibernation. 

We'll see how that goes. ;)

For tonight, we toast to more good health, to miracles, and hard work, and smiling, and laughter! It all seems to be working pretty well. 



Saturday, October 25, 2014

October MRI Completed


Just finished the MRI. Time in the tube really gets you thinking. To stop myself from worrying (especially when I can feel the contrast dye make its' way into the tumor cavity which terrifies me) I spent time repeating my mantra, "thank you, thank you, thank you". I forgave myself for not being able to eat healthy all the time. I forgave myself for not working out enough. I forgave myself for not being perfect. And I spent the rest of the time swollen with gratitude. I am so grateful for this life, this husband, this family - immediate and married into, I'm grateful for our amazing friends. I'm grateful to have a home to live in. I'm grateful that I'm capable of so much, like bending my body at yoga. I'm grateful to be alive, to be here on Earth. I'm grateful all the time, for everything. It's probably annoying, but it certainly makes me really happy even when life is unsure. I guess the thing I've learned recently, perhaps just now as I write this, is that you don't have to have answers to be happy. You don't have to have everything be good news, or the best life situation. Just by being grateful, and forgiving myself for my downfalls, my humanness, keeps me happy. What a cool ability, to have control of our minds. 

Wednesday, October 8, 2014

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.


Tuesday, October 7, 2014

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.


Monday, October 6, 2014

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.


Thursday, October 2, 2014

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

Sunday, September 21, 2014

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.


Friday, September 19, 2014

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.

Thursday, September 11, 2014

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

Monday, September 8, 2014

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.
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