Monthly Archives

May 2013

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Buphenyl (Sodium Phenylbutyrate)

I’m embarrassed. Remember back a few months ago when I was ranting about that very expensive drug that treats gliomas? (As an aside, it’s the same drug that Dr Burzynski uses to create his antineoplastons.) Well, apparently, I’m one of the lucky ones that can get it. I kind of assumed I couldn’t because my doctor said it was a long shot. So, like a defeatist, I didn’t bother to even check with my insurance. Yesterday, as I was reviewing my lists of recommended supplements and recommended medications, I decided to bite the bullet and not be afraid of hearing, “No”. After several phone calls, lots of hanging out on hold, it looks like Buphenyl (sodium phenylbutyrate) is mostly covered. If you recall, that is the prescription medication that is for people with urea cycle disorders (UCD); it is also used for off label use to fight various cancers. After a little bit of web surfing I read that Aetna health insurance (not my health insurance – I’ll be getting it though Blue Cross Blue Shield) goes as far as covering Buphenyl for UCD and also acute promyelocytic leukemia and malignant gliomas. Wow! The problem? As I try to find more proof that Buphenyl is effective to treat malignant gliomas, I can’t seem to find it. There has been one complete response that I’ve found, but that’s just one person. Shoot – that result could be as simple as tumor genetics. I feel dumb because I wanted this drug, and now I wonder if it’s actually worth the side effects and effort. I’m posting the study here for my other brain tumor fighters so that you guys have the info if you’re interested… your browser does not support IFRAMEs There’s more out on the web, but not much. Please feel…

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Winston Salem in Pictures

Downtown Winston Salem My new favorite bug. They’re red! Checking out the gorgeous Wake Forest campus My favorite flower among the gardens near campus.  Cutest farmers market in aaaall the land. It’s green. It’s lush. It’s absolutely perfect. In the heart of the Arts District. My favorite area! Setting up for live music and an art walk. This town is so cute! A proper send off near the rental car return. I buckled into our flight to Charolette and noticed a lucky quarter next to my foot. Sweet! The view while I contemplated all of my good fortune over the course of our trip, really absorbing the implications of this new endeavor.   Arriving into true humidity. It’s called rain. But clearly, Mother Nature welcomed us back with a smile. 

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Fixing The Chinks

Wake Forrest was such a unique trip. We would never have happened upon the destination, but while we flew over the Rockies, I thought about how different my life would be if I wasn’t able to explore the opportunities that pop up in my life. The majority of my success, the ability to jump at cancer fighting treatments, or subsequent programs, lay within the hands of those whom I have loved so dearly, who have supported us emotionally – but above that, financially. I am blessed beyond measure. Dan and I have dedicated our lives to creating our own mini think tank, to include the best doctors for my care. We will fight this scary adversary with support from all angles, and now we’re able to include Lindsey, my strategist who will help me understand the medical world, the research, the opportunities for treatments, and I also have the Take The Fight (TTF) resources of Andy, Dineth, Lawson, and so many others who are working toward their undergraduate degrees while literally changing the world of cancer care. It is thrilling! As a basic recap, Danny and I flew to Winston Salem, North Carolina to meet with a group of students at Wake Forest University (overseen by David Warren who was out of town helping his father fight his glioblastoma). It was for a new program called Take The Fight which will subsequently spread across the country to other universities, and further expand around the globe. It pairs students, one-on-one with cancer fighters. The student uploads all of your medical records onto an online database which is easy to access and modify for those on the TTF team and yourself. You also receive a briefcase of hard copies of everything (even all of your MRIs). Both of these systems (the briefcase…

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My Life is Changing

…and soon, you’ll see, the medical world is evolving. No one fights alone The bravest patients The brightest students Not for profit, for survivors We play to win More organized. More informed. More engaged. A new way of fighting emerges Fight Smarter. The world’s most hands-on cancer non-profit It’s not a charity. It’s an army.

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Winston-Salem

I’ve probably said this several times, about several places, but Winston Salem is definitely God’s country, one of the most lovely places on Earth with matching people. We are having a BLAST. The appointment with Dr Lesser went smashing. He and the radiologist believe there is no reason for concern. Sweet! It was wonderful meeting with Dr Glenn Lesser, he is open minded, clearly educated and interested, helpful with resources and just great to speak with. Definitely an ally in our corner. Most of all, though, has been the interaction with Take The Fight. My sweet Lindsey was out of town for a bit so Andy & Lawson sat in and helped during our appointment. It’s amazing having medically knowledgable minds to ask questions. Winston Salem is full of the most kind people, Dan and I are having so much fun. Especially with these nut yarn ball storms. SERIOUS. This is an immediate photo…

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We Made It!

We are nested safely in Winston Salem. Phew. What a day. All Dan and I can keep thinking and talking about is the devistation from the tornados. We feel really lucky to be alive. I’m so sorry for all my Oklahoman friends from TCU, and all the others whom I don’t know, that were effected. The touching stories of teachers sheltering elementary school students, praying, and trying to save lives. The stories of reunited survivors, and reunited pets, the video and images, jeez. Pretty horrific and shocking stuff. Again I’m reminded how precious and delicate life is. I have everything to be grateful about.

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Always an Adventure

Well, Dan and I flew out this morning for Wake Forrest for my appointment with Dr Glenn Lesser, and my inaugural meeting with Take The Fight. Unfortunately, Dan and I are sitting on a plane on the tarmac in a city named Rockport, IL (or some name like that). We were in a holding pattern for almost two hours, and now exist among almost 20 other grounded airplanes, refueling, at this airport alone waiting to be allowed to fly into Ohare. Apparently, though not much of a shock, there is a hovering electrical storm (pretty scary storms around the country these days). We have missed our connecting flight, and since all incoming flights were not allowed to land for the past few hours, I can only imagine that when we do get to Chicago the connections are going to be a complete nightmare.  Well shoot. At least we’re near the bathrooms and I’m next to Danny 🙂 The flight does not have a single empty seat, it’s a mess in here, but storms don’t last forever and eventually we’ll make it. And if we have to stay in Chicago, that’ll fun too! Nothing like an adventure with the guy I love. Except he’s getting really hungry. Of course this is the one flight where I didn’t pack snacks. Such a fool!!

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BG Therapeutic Range

Hells yesssss!!! I just made it into Seyfried’s range for the first time! Niiiice. For a reward, I’m lacing up the sneaks for a long, soothing, celebratory walk.  Look out ketones, I’m coming after you next. PS a butterfly just buzzed my head tower (I’m on the balcony)…butterflies hate Hermie. Moths too. I can just tell 🙂

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Little RKD Engine

Great news, my blood glucose and ketone levels are almost in the zone! According to Thomas Seyfried’s book, my blood glucose needs to be between 55-65 and ketones ideally between 4-6. My blood glucose has been consistently been at 66, 67 and the highest I’ve been with the ketones has been 2.6, so I’m getting there! It’s very exciting!! Living on the restricted ketogenic diet isn’t as bad as I thought. I’m 5’7 and currently 135 (I keep losing weight). I eat 1200 calories a day, and 80% of those calories are from fat. You’d think it would be disgusting, but it’s actually pretty awesome. I just freshly ground some decaf coffee beans, and created a delicious morning drink with two tablespoons of heavy whipping cream. Yum! Who gets to do something like that? This girl! 🙂 I’m able to eat/drink very rich foods and since the amounts are so restricted, I feel great. I feel satiated. Some days, I do get really hungry, but when that happens I eat a little extra protein or veggies. I want to be successful with this diet, to turn it into a lifestyle, and if I’m miserable it will all fall apart. I stay within the boundaries (80% fat & only 20 grams of carbs) most of the time, but I will not be ridiculous, stressed out, or miserable. That’s no kind of life. It feels wonderful to be succeeding on this restricted ketogenic diet. And, although I don’t run any longer, I have thoroughly enjoyed my new hobby of walking. Can walking be a hobby or is it an activity? Well, whatever you call it, I like it. Just yesterday, for the first time, Dan and I walked the Lake Union loop. It was a spectacular day to enjoy the six miles….

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