Monthly Archives

November 2014

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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…

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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…

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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…

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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, wehave no new recommendations at this time, other than to get a follow-upMRI 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…

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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. 🙂

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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…

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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…

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