Monthly Archives

February 2012

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Misery Loves Company

Beautiful blooming tree in front of the Green Lake library It’s gorgeous in Green Lake today. It’s sunny and the air is crisp. I just jogged the lake with Emma, stopping by the library to pick up a book that I had on hold. Things have been great, just chugging right along with the protocol. I’ve made some changes and decided to allow antioxidants to my Monday-Wednesday routine. Those are the high dose days of artemether, and I’m supposed to limit my antioxidant intake because antioxidants clean up free radicals in your body. The free radicals are what are needed for the artemether to arrive into the cancer cells. Anyway, it’s a long story and I don’t completely understand it, but what I do understand is that my body needs an apple or a hot tea here or there – and some raw garlic. I’m hoping that allowing my body to have antioxidants on the high dose artemether days won’t hurt the progress. Guess we’ll just have to find out in April at the MRI. I just can’t live off of bland, boring, nutrient sparse foods. I crave tea more than I crave wine. Is that crazy or what?!? It’s true though. Never thought I’d say it. Other changes in my life include the removal of my copper IUD. I had no idea that copper causes angiogenisis (the development of new blood vessels), which is “a fundamental step in the transition of tumors from a dormant state to a malignant one,” according to Wikipedia. Ooops. Thank you to my brain tumor friend Jessica for pointing that one out. Jeez. Seriously, I am so glad that I post so much personal information on this blog because ya’ll keep helping me get healthier and healthier. There are so many things out there…

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Just A Chapter

Two days ago I couldn’t stay awake for more than 4 hours at a time. If you think about it, it’s kind of hilarious. I’m like a child sometimes. Yesterday I did high doses of curcumin, piperine and then followed it up with a sulforaphane drink. There’s a picture below of the concoction in process. I wasn’t able to finish it all, but I didn’t throw up so that’s progress! I took a big gulp again this morning, and almost lost it. I’ve saved the final gulp to finish later today or tomorrow morning. My stomach is in complete knots. The only thing I can handle right now is hot tea. I’m okay with that though. The whole point is to keep the drink down, so who cares if it makes me sick, as long as I don’t barf.  A few minutes ago, through the pouring rain, I jogged the lake. I needed a challenge. I’ve been so damn tired, and for a second, I started to feel a little better. Seizing the moment, I tossed on some running shoes and a hat, snagged Emma’s leash, and took off around Green Lake. Oddly, my stomach loosened up as I ran. The rain was refreshing, and reminded me of how fortunate I am to be able to run again. I thought about the long journey after the brain surgeries. This brain tumor is just going to be a chapter in my life, not the whole story. 

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Bone Tired

I’m sorry that I’m not posting very often. I’m grumpy and….I.am.exhausted. I can’t seem to read, or email. My mind is bone tired. My body is bone tired. Not sure why I’m so tired, but I can’t seem to function very well. I’m able to work on stuff for small periods of time, then my eyes get droopy and I can’t continue. I’m not thinking very clearly and it’s hard to say what’s causing it. Maybe I just need more sleep, who knows. Maybe it’s the artemether & natural chemotherapy working their magic, burning the straw shacks in and around Hermie village. Won’t know for sure until April 19th. It’s hard when I’m so exhausted. The periods when I’ve been the most exhausted have historically correlated with fast tumor growth. Lets hope that this is the exception. Walking to the retirement home yesterday,  through puddles. Favorite new sandwich:Tuna with Dijon mustard, fresh maitake mushroom & broccoli sprouts

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Meal Planning

Success. There’s a billion birds at my feeder!!! Whoo hoo!! They are so cute, and so little. It’s fantastic! Bingie was drooling and talking up a storm, we were both very excited. Thanks for the encouraging words on the last post. I appreciate the support. Dan and I realize that this is very difficult. We’re trying to navigate this journey with tenacity, but sometimes it’s important to allow mistakes. The whole thing is tough though. I’m not really in a position to eat a normal diet. If I want to live, I need to eat better than anyone else. I need to fuel my body with cancer fighting foods and supplements, along with avoiding cancer feeding foods. It’s impossible to be good all of the time, and it’s hard not to hate yourself for your mistakes. The mistakes taste so good, too. That makes it even harder. Dan and I are trying a new technique this week. We’ll see how it goes. It’s a combination of suggestions from friends. We’re doing meal plans Monday-Wednesday. Thursday will be a bit more difficult because of the sulforaphane drink (which I’m thinking about doing on Fridays as well). On sulforaphane days I tend to not be that hungry. Saturdays are normal days when we can eat a more relaxed diet. Sundays are back to high antioxidant foods. So, it will look something like this: Monday/Tuesday/Wednesday (limited antioxidants):  BreakfastOatmeal or toast with almond butter LunchTuna (with or without bread) or almond butter sandwich DinnerSalmon or other fish or shellfishbroccoli or asparagus or brussels sproutsquinoa or brown rice Thursday/Friday: Whatever fruits or vegetables I want….YUM!!! Salads, slaws, whole grains, nuts, seeds, seafood…curcumin, raw garlic, onions, cayanne pepper, broccoli tea, green tea, oh the pleasures of the simple things. On Monday-Wednesday I find myself craving tea and…

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Chemo Drink Update

Bwoooohahahahaha….we did it!!!!! I drank the concoction, a gulp every 30 minutes. I created my drink with upland cress, daikon radish, and sulforaphane precursor pills. Because I used actual plant instead of sprouts, the drink was double the size. It was okay though, I did it! When my stomach hurt, I took big spoonfuls of organic hormone free yogurt (full fat). It soothed my stomach along with other little tricks. Having finished the last of the drink, by 2:00 pm, I could barely keep my head up, so I went to bed. Now, all rested after a several hour nap, I feel like a million dollars!! Thank you for supporting me. This is tough, but once it’s over I feel wonderful. It’s nice to have that behind me until next week. Now it’s time to take a deep breath and pamper myself. I think I’ll go downstairs and paint my toenails, they’re looking a bit ratty. PS I didn’t feel the Hermie burn like I have in the past, but I think that’s because I fell asleep.

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Sabotage

It’s ironic that I pride myself on encouraging others to take care of themselves, and yet here I am a hypocrite avoiding my own life saving tricks. Sometimes I shoot myself in the foot. As I said in an earlier post, I took this week off of the high doses of artemether because I wasn’t feeling very well. I wanted to give my liver a break. I had every intention of taking my high dose sulforaphane drink yesterday (the natural chemo), but as the day wore on, I kept avoiding it, deciding that I would take it just before bedtime and try to sleep off the nausea. Of course, just as it always happens, when I procrastinate, I end up falling through. And as the evening disappeared, my stomach increasingly clinched, fearful of the nausea and ill effects. In my infinite wisdom, I poured myself a glass of wine (yah, genius, because THAT’S good for my liver). Then another. Foolish girl. It was pure sabotage. So here I am the next morning with the same clinched stomach fearful of the nausea and ill effects. Why am I delaying the inevitable?!? I’m drinking a cup of black tea (infused with sulforaphane), trying to work up the courage to try again with the natural chemo. We know that this system works because our friend shrank her brain tumor with this, so why am I still staring at the glass? Last week when Meghan stopped by with electrolyte drinks we discussed the smell from the concoction. I think it smells like a baby’s diarrhea – the kind of baby that’s eating whole foods (mothers know what I’m talking about). Megs thinks it smells like burnt hair. Either way, it’s horrible. I find myself about to barf, even though I haven’t even drank any…

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Guest Blog

Here is my guest blog, posted on www.suvivorshippartners.com What does it mean to advocate for yourself? It means survival.  Unfortunately, in today’s medical maze, there aren’t many successful treatments for my type of cancer.  I’m fighting a malignant brain tumor, and the replication of those nasty cells progress faster than current healing science. According to the traditional system, my treatment plan is supposed to go something like this: brain surgery, radiation, chemotherapy, another brain surgery, maybe another type of chemo, and then an agonizing death while my body and mind degenerate.  Sound like fun?  No.  Nope, the outlook is horrible.  Is that acceptable?  No! If your doctor doesn’t have the means to help you survive, it is your duty to look toward other options.  You have to fight to survive, which is heartbreaking because those with these death sentences are exhausted and beat down already. At first, I believed my doctor’s words and thought that there was nothing I could do.  My very prestigious neurosurgeon and accomplished radiation oncologists both said that I could eat whatever I want.  They said I should live my life however it makes me happy.  It sounded nice.  I was set to sustain on red licorice, peanut M&M’s, sourdough bread and glorious full bodied red wines.  Yum! But, something didn’t sit right.  It just didn’t make sense that my food choices didn’t matter.  I mean, wait a minute, I had heard that you are what you eat?  If food is fueling my body then it doesn’t make sense to load up on junk. I realized that there was so much that I didn’t know, and I decided to figure out more about what causes cancer and what feeds it.  Then, here and there, I kept hearing stories of survivors of brain cancer.  There are only…

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Miracle Melatonin

Hello friends! Yesterday I was so exhausted that after my volunteer time at the retirement home, I walked back to the house, stepped into pajamas, and fell into bed. I slept for three hours. I’ve recently started taking 21 milligrams of melatonin at bedtime. Not only does it help your sleep rhythms, it boosts your immune system (among other things, increasing the number of your natural killer cells) and has been shown in clinical trials to extend the survival time for a multitude of cancers (including gliomas). I’m only going to take melatonin on the days that I’m not doing high doses of artemether or sulforaphane, just to be safe, but I feel like it’s a great addition to my cancer fighting cocktail (for the record, I took Monday, Tuesday, and today off of high doses, I hadn’t been feeling very well so I figured I’d give my body a break).  Melatonin cleans your body of free radicals which are necessary for my artemether, so I’m pretty sure that it’s a bad idea to take it during high dose times. Other pharmaceutical chemotherapies have been shown to work synergistically with melatonin. It’s actually pretty amazing. It’s too bad that doctors are scared to include melatonin during chemotherapy, it would increase efficacy and extend survival time. There’s several research studies proving it. If you’re interested, check it out. There are a few studies in the United States, but most have been conducted in Italy.  Anyway, since I’ve started taking melatonin, I’m sleeping better, but I’ve also been pretty exhausted. I take it as a good sign though. I hadn’t been getting enough sleep, and the melatonin is forcing me to sleep more.  On the walk to the retirement home, I saw this amazing creation. I don’t even know what to call…

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Twinsies!

Oh those little faces, are so cute! They’re even wearing a Team Jess shirt – that’s so rad!! This photo jumped into my email inbox, and instantly I started laughing. It made me feel like I could drink another cup of that disgusting natural chemo. There’s something about laughter that settles the stomach 🙂 For those who don’t recognize them (they are getting so big), these cuties are Hazel and Owen, the sweet babies of Matt & AJ (you may remember them from Movember For Jess). Thank you for inspiring me to keep my chin up! Their gesture to make me smile completely spun me around into happiness and immediately filled me with energy. You made it so easy to keep going! This morning I got the chance to meet with a new friend, Polly who consults with cancer patients and survivors. She partners with them, figuring out a plan of success. Recently, she asked me if I’d be interested in writing a guest blog. The topic is “advocacy.” She said that I seemed like a great match. What a compliment! How fun! So, the other day I sat down at my computer and started free flowing on what advocacy means to me. It was thought provoking, and a great treat sharing my perspective. It should be up on her website in the coming days. Once it’s posted, I’ll share a link. For now, if you want to check out her website, it’s incredibly informational and fun – there are some great blogs, check them out (Navigating Cancer button). Polly is a wealth of knowledge, wrapped in a warm, kind hearted shell. If you know someone in the Seattle area who has cancer, or is a survivor, her resources, education, and can-do attitude would no doubt help you jump to…

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