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

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. :)

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.

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. :)

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....

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! 

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.