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July 2014

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Cue The Music

Recently, I was invited to join a group of bloggers as an ongoing roundtable for brain tumor patient issues. When the email popped into my inbox, I was surprised, and honored to be included. Over the past four and a half years I’ve corresponded with many brain tumor fighters, and family members of fighters; a few times I’ve been solicited to endorse various products (which I’ve turned down – ironically they were mostly pharmaceuticals), but I had yet to be invited to submit a post on a specific subject regarding brain tumor patient care or patient issues. I am flattered! The deal is that I submit my post and then out of all the submissions the National Brain Tumor Society will choose a few to be featured on their national website. I don’t know if that excites me or terrifies me, but I do love to write so I figured this will at minimum be a fun homework assignment, a good challenge. The topic: What symptoms do you think should be candidates for therapeutic drug development? When I read the topic, I slouched down, disappointed. I was hoping for something else, anything else, that I could write organically and passionately about. The tricky part? I don’t like to take drugs. (Which, humorously, will probably bump me out of the running of getting on http://www.braintumor.org/.) But what do I do? I wasn’t about to all of a sudden flip flop my stance just for the chance to be published. At least, I didn’t think I would. But as I started really thinking about drugs, I remembered my lorazepam prescription which as been a life saver. Possibly even literally. Lorazepam is what I take as I feel an aura, the premonition of a seizure, coming on. It effectively mitigates my seizure issue,…

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The Issue of Supplements During Treatment

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

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The Glass Box

I hate saying this. I hate that this is the situation; that this is how I feel. But, this is a tumor blog and it’s where I go to share my journey, so here goes nothing…. Tonight I went to a couples baby shower. It was at an understated, yet trendy bar full of friends. There was laughter, and hugs, and back slapping, and smiles. The celebration was for a specific husband and wife, but half of the women there were pregnant, so by default, it was a celebration for several along side.  I got the chance to catch up with my beautiful friends, which was lovely, and yet painful. I even cried on the drive home, which is incredibly rare. Throughout the evening, as I got caught up with people’s lives, I couldn’t help but notice the disparity between who I would be if I hadn’t been diagnosed (a career, the ability to drive, financial stability, perhaps children). As I listened to people speak, with a smile on my face, I felt myself mourn for my old self. I mourned the person I could have been, of who I was on track to be. I love watching my friends deliriously happy, so excited with their life’s journey. But it’s also confusing. It’s uncomfortable that being around friends makes me both happy, filled with joy, and yet regretful, deeply saddened. I hate that I feel that way. Currently, I am stuck on a hamster wheel of treatments and won’t be finished for years. My life is lived in 4 hour increments, and I should be thrilled by that luxury since it implies that I’m doing well. But it is also extremely taxing. I can handle the stress when I live in my bubble, when I bound around the house being…

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Last Minute Cherry Sale (Short Window)

Sorry for the short notice, but I just received the call that cherries will be delivered to my house this Thursday (July 24th) and available to pick-up that day, or the following day, Friday (July 25th) any time.  The cherries are by pre-order only and I need the numbers by the end of the night tonight. Here’s the info: Organic Bing Cherries 1 bag = 1.25 lb = $7.50 If you or some friends, or coworkers are interested, please send me your orders. You can pick them up at my house anytime Friday day, evening, or night. If you can’t pick them up until Saturday, I’m sure we can work something out. Thank you for the support, and I’m sorry this is such short notice! Love, Jess PS Email me if you have questions or want to place an order. (jessoldwynttf@gmail.com)

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Medical Marijuana: Friend or Foe

Since I shared out loud, opening myself up to friends and strangers about my diagnosis, I have been inundated with suggestions about adding cannabis to my protocol. Sometimes it’s been under the cloak of privacy, other times it has been aggressively splattered on my old Facebook page. It is a divisive subject with loyal believers of its’ healing properties, conversely others remain afraid of the psychoactive effects, fearful that it deteriorates lives. The first time I ever smoked pot was in high school. I think I was 15. Growing up on San Juan Island, we were taught in our fifth grade drug class that Marijuana grew naturally in our environment. We were taught how to spot it, and that we were to find an adult to remove and destroy it. As a kid, I was fearful of drugs, but marijuana seemed different. I never grew a liking toward it, though I experimented, and throughout the years would still play around every several years with friends. The pot made me unable to do my favorite things, though, like talk a lot, be quick witted, or harness my boundless energy. I still have friends that are regular pot users (which seems like such a lame way to describe it), and they’re great. They’re brilliant, and hilarious, and successful in their careers, but for me, it was like a rolling haze throughout my brain, shutting doors along the hallway of Thought Process. It was a bad fit. With that being said, when people shared anecdotal stories of shrinking tumors, the alleviation of pain, or of enhanced sleep, I listened (or read the emails) with the same skepticism I hold toward anti-seizure medications, or standard of care. I would analyze their words and feel my throat ache with the memory of my old cigarette…

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Invisibly Expensive

I’m feeling so grateful to be alive today. For some unknown reason, the sentiment is stronger than usual. It’s palpable. It feels good! I feel like one of the luckiest girls in the world. To have grown up on one of the most beautiful islands on the planet, to wander down to our pond with Kaal watching tadpoles morph into frogs, to collect beach glass on sunny days walking along South Beach. To be influenced by the gracious and reprimanding adults of the community that helped mold me. To learn from teachers who watched me grow from the time I was a toddler, pushing me to always challenge myself, to never settle. To get to experience Costa Rica as an exchange student in high school; realizing how amazingly different cultures are, yet noticing the similarities of human nature. That I was able to travel to Texas for college, experiencing the unique world of Southern Charm. That in my late 20’s I was able to explore Thailand with only a backpack strapped over my shoulders. That I was nurtured by Friday Harbor and West Seattle friends who happened to live there, softening the blow of fear as I traveled alone. I was able to analyze who I was, who I wanted to be, what I believed in, and I spent a lot of time questioning the purpose of life. It was a time of epiphanies, of self growth. Then came deep love. True love. The partnering with my soul’s mate. Which too soon, came the headache, the demanding of a MRI, and ultimately the moment that turned our lives upside down. That I survived the first tumor resection, then almost died from the blood clot in the tumor cavity. That I learned how to speak again, and read, and write, and walk, then…

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Coconut Wisteria Popsicle

It is so hot. Soooo hot. Looking for reprieve this afternoon, I decided to create a random popsicle recipe to make us happy, and distract us from our lack of AC. The 80’s are tough, and there’s rumors of 90’s next week. Ugh. I’m such a mossback. I miss my rain. Did you know you can eat wisteria flowers? They’re delicious too! Don’t eat the stems, though, or the leaves or seed pods. All those other parts are toxic, even deadly for young children, especially the seed pods. The flowers taste like butter lettuce with a tiny hint of honeysuckle. Very refreshing.  Fresh off the vine! (Second round of blooming already this year.) Ingredients 1 frozen banana (I keep them around in a pinch, you could use a raw banana too.) 2 cans of full fat coconut milk 1/2 cup shredded unsweetened coconut 1 small avocado (pitted & peeled) 1 cup wisteria flowers stemmed Important to remove stems. If you have allergies you should remove the pistils and stamens too. (We don’t so I left them in. I like the flavor, it gives a hint of honey.) Blend everything (except for the flowers). If it is too thick, add just a bit of water, little by little. Blend for a quick swirl, literally a pulse or two, leaving it nice and chunky so that you can see some flowers in the mix, along with the fiber of some of the chopped petals. Then you just pour it into the molds, and freeze them. Aren’t they beautiful, and feminine?  This recipe makes about 20 popsicles, each holding approx 109 calories.  Here’s the breakdown of macronutrients and nutritional information for one popsicle.  You could probably use a lower fat coconut milk, but why? Fat is so good for you. It gives such…

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Nature’s Heartbeat

“Life is occupied with perpetuating itself and surpassing itself; if all it does is maintain itself, then living is only not dying.” That quote is from a random book I read over the weekend while staying at George & Diane Steed’s guest house in Friday Harbor (my brother’s wife’s grandparents). I can’t remember the name of the author, but I’m pretty sure the book is titled Voluntary Simplicity, or something similar of that nature. Reading it, as it was published before the mass of home computers and cell phones, was fascinating. In fact, the Steeds are facinating. The guest house had no TV, no radio, not even a clock, and I loved it. You could hear the crashing of waves from time to time, as they’re out on the north end of the island just off the water, and it felt like a heartbeat; that I was snuggled safely in Nature’s womb. Dan would still fiddle on his phone, but I completely powered down. We played Chinese checkers over decaf coffee in the morning, and listened the birds outside our window before bed. It was glorious.  I visited mostly with Diane. She is so interesting, very well read, and curious, and happy, and kind. Dan and I noticed, as we were laying down for a nap one of the afternoons, how much of a treat it was to visit with people of the Steed’s generation. We don’t get to visit and hear stories from octogenarians very often. The stories we get are from books, or movies, or TV shows. They’re often fabricated, or embellished, or extreme, or third party accounts. To hear from real people about their experiences, is a special treat. If I lived in Friday Harbor I would want to visit them all the time. Listening to their…

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Orthoexia? What!

Holy. Cow. I have borderline orthorexia.  It’s an actual thing.  I was watching the news this morning and a story came on about a girl who went vegan and about a year into it she realized that she would stand in front of the fridge for 20 minutes, overanalyzing her food choices, afraid to make a decision. She was obsessed with picking the healthiest choice (the definition of orthorexia). Hearing her story was like looking into the mirror. The girl became malnourished, having an extreme case of the disorder. I would consider myself more borderline, but the truth is, my obsession with food has lead me to become weak, have more seizures, limited my activities, and has isolated me from social settings. It has been too much. My relationship with food has become unhealthy.  The tricky part, is that in the case of cancer many people say that their extreme food choices (orthorexia) saved their life. That it stopped their tumor growth, or even healed them. Of course, as with everything, there’s a fine line, but I’m realizing for me personally, I’ve crossed it. Analyzing food has been all encompassing. Food has come to signify life or death. It has become my god and my devil.  This realization, of orthorexia, comes just several days after making the choice to stop being so restrictive. I have stopped checking macronutrients (even though I can mentally size up grams, and ounces, and calories, and fat content and carb amounts of various foods – vegetables, fruits, meats, dairy items, oils, nuts – by memory) I no longer eliminate things from my diet. I made that decision after observing the fact that my seizures have gotten worse the more I restrict, the more I obsess and remove foods from my diet. I should say, I…

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1st Cherry Delivery (this year)

Thank you thank you thank you for buying cherries at Kings Market & Market Place!! You guys are so wonderful!! I love it when you comment about buying cherries, and the emails, and the text messages!! It’s like you’re sending me hugs, and it makes me feel incredibly special. If you take any photos, I’d love to add them to the blog! We delivered on Saturday, and the whole trip was a blast. Hanging out with Dan is my favorite thing to do. He appreciates my rediculousness. We were stressed about missing the ferry (which we didn’t) but spent the entire trip laughing. And a road trip to deliver cherries might be the best thing ever. It was so much fun! The best part was getting to thank everyone at both grocery stores. This is our third year of selling cherries, and it’s a wonderful fundraiser. More than that, though, it’s really fun to have something to provide, to not just ask for help. Usually my dad does the deliveries, since I can’t drive, and it was nice for us to take over and accomplish what he normally does since he’s away getting venom.  I can’t thank you guys enough for all of the support. I love doing the cherry sales, and I feel really fortunate that Kings and Market Place partnered with us to make this a reality.  Thank you thank you thank you thank you!! :))))))….(that’s my smiley face with a bunch of extra chins because I’m so happy).

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