Monthly Archives

April 2013

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Headed Home

No major complications! I even feel okay. We’re at JFK and should be boarding in 30 minutes (never mind our plane was sequestered – furloughs). It has been a fabulous trip, I feel pretty great, and as always it was fantastic to see Dr N & Dr C. Just 6.5 (+/++) hours and I’ll be in Danny’s arms 🙂 I have had so much fun with Amy, my buddy from high school. I’m so lucky that I have such amazing people in my life! Hope you are having a wonderful day, with sunshine outside your window.

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MRI

Today has been fabulous. It is absolutely wonderful having my MRIs on Saturdays. I only saw one other patient, things are always on time, no one is stressed, and there’s more privacy. The girls that work on Saturday are really sweet, and funny, and the nurse is really good at setting IVs. My vein busted on the first poke, but try two was superb. Dan and I have been reviewing the MRI scans from January and today. We’ve been fidgeting with the enhancements, lighting, and zoom. It is so hard to tell what we’re looking at, however, in the past we have seen obvious growth at least once, this time we see no obvious growth. Dan and I personally went to the post office and mailed our copy of the scan to Dr Liau. Last time it took over a month to have my scan read by UCLA, now they should have it by Tuesday. Sometimes you just need to take things into your own hands. I’m hoping we’ll get a read on my brain by the end of this week, fingers crossed that they don’t find anything concerning. There’s still so much inflammation, but that’s to be expected. I feel relieved, and hopeful, but you never know with this stuff. For now I’m going to take a nap, then Danny’s taking me to get a steak 🙂 Hope you all have a fabulous weekend. As an aside, it always amazes me when I look at my poor sweet damaged brain. It’s so good to me, and has been through so much. It’s pretty incredible. I’m really lucky.

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Metformin, Miracle?

Yesterday was gorgeous, so I grabbed Emma, and for the first time in over a month, I walked the lake without Danny or any of my friends. I packed a satchel with ice water (a necessity if I have a seizure), aura medication, and my cell phone. It went so well that I did it again today. It’s nice to get out, walking is no running, but it’s better than nothing 🙂 I’ve also been researching like crazy. I’m trying to find additional treatments that will supplement my current protocol. One such addition is metformin. It’s a drug that regulates blood glucose in those with type 2 diabetics and is shown to cut off the food supply of solid tumors, even the hard to reach (because of the blood brain barrier) brain tumors. I had been looking into various blood glucose medications on Saturday night, while Dan was at the movies with his buddies, when *bam* in my inbox appeared an email from a friend of the blog. David’s father was diagnosed with a glioblastoma last year and somehow he happened to check into the blog again (as he had done a time or two before) and emailed me some pretty badass information about gliomas & metformin. One of the articles even referenced an increase in efficacy when combined with a low glucose style diet (hello Keto!). This is exciting! So now, I’m getting all of my ducks in a row so that I can discuss getting a prescription while I’m in NYC visiting Dr NYC & Dr Germany. I want to do everything I can to fight smart and truly target my specific tumor. I’m quite exhausted, and truthfully, I don’t feel very hopeful about this MRI or the future. I’m scared. The seizure and the numbness have really…

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New Schedule

Bad news. I had an aura on Monday. I hadn’t been sleeping well and as you know I woke to Emma pooping all over the house, I went into frantic clean mode and started a pot of tea. One thing led to another and before I knew it I was cleaning, taking care of bills, and running around the house like I was on crack (not that I’ve used crack, but I have seen a few eye opening movies). I drank four cups of black tea, and since I’ve been on my 600 calorie fast, my body was not capable of dealing with the caffeine, lack of sleep, and lack of food. Silly me. Luckily, since it was 6:30 pm Dan was home. We calmed me down (I could not use my right arm at all), then Dan scooped me into his arms, carried me up to bed, and tucked me in. He placed my eye covers on and my Bose headphones over my ears, slipped half of a muscle relaxer in my mouth (at my request – a goodie from surgery), I swallowed and continued to sleep for the next 14 hours. I now have a new schedule. I am in bed by 8:00 pm (although the past two nights it has been 7:00 pm), and it is lights out at 9:00 pm. If I can’t sleep, I play what I like to call the Alphabet Game. I use the alphabet and start with the letter A and I let the name of a person come into my mind and I think about him or her and I hope things for them. An example: Annie. I hope that Annie has had a wonderful day, that she’s being smothered with kisses by her two precious little daughters. I hope that…

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Happy Hair

Today (and everyday), I am incredibly happy to have hair. It was fun shaving my head back in 2010, however, the grow-out was excruciating. This time, I decided to just see if I could finagle a way to grow out all of the shaved areas, hoping that it wouldn’t be a complete disaster. I knew that I could always shave the whole thing later if it didn’t work out. Here are a couple of current photos of my happy, healthy short, but rapidly growing hairs. I literally just took the photos (except for the final picture which was from my dinner date with Jobi, Ashley, and Christel). I’m so excited about my hair! How fun is this!?! Remember last October….. Look what I can do now…..I call it my Snooki poof 🙂 You guys, look! I’m seriously over the stars about this. I finally feel feminine, and beautiful, and normal. I have a warrior’s clandestine life that passerbys don’t know about; I just look like a healthy, happy woman. You guys know that I have secrets about the war that I’m waging, but I don’t like to wear it on my sleeve – or on my head for that matter. That’s why I write the blog, to get things out, to share information, and also so that I can emote whenever I want and I don’t wear down my friends and family (especially my poor husband) – although, inevitably, at times I must be draining on loved ones. I know that this tumor is very hard on those around me, and I’m really sorry that life works that way. I wish it didn’t. I want my people (and everyone for that matter) to be happy. Wouldn’t that be great? All happy, all the time. 🙂 Genuinely. Just a little secret…I’m…

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Day 4

Hi guys. I’m officially almost half way through my fast. Woo. Hoo. I do not know how people starve themselves, it feels so unnatural. I have had several questions about the research and efficacy of this fast/food restriction so I have decided to post the most informative research paper I’ve found. You don’t have to understand the whole thing, skimming is almost just as good, either way I hope if you have questions or concerns this paper alleviates any doubt that I’m doing the healthiest thing for my body. An added advantage to this ketogenic diet that I’ve been on for the past few weeks, and now the restricted style fast, is that I’m down to 142 lbs (starting point hovering between 150-155). I don’t care so much about the weight loss so much as the realization that as each pound of fat evaporates from my body I am eliminating Hermie’s pantry. Bwahaahaha!! So awesome! I have had much excitement in the tumor bed, and my right arm and hand are actively going in and out of sensation (mostly out). My right side is very much in tune with my tumor so any activity excites me. It’s also scary because it could mean bad things, like growth, but I’m copying research, so it should only be positive results. I’m trying to tell myself that anyway 🙂 I’m depriving myself of glucose and that’s exciting! We know Hermie can’t eat ketones, so that’s a great start. Anyway, there is so much about this concept, like checking blood glucose and blood ketone levels, etc., but I’m not going to go into it all. Hopefully this paper is helpful. This is definitely tough, but I want Hermie out of my body. I don’t want to manage my life and just slow Hermie down….

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Seyfried’s Fast

After further research, yesterday, I started a therapeutic fast. For brain cancer, and seizures, it’s recommended to do a 7-10 day water-only fast. You can do up to 600 calories and extend the duration if the water-only restriction is too hard for you. Or for me for that matter. It is my second day, and I tried to do only water, but it hurt my stomach too badly. I decided I will start this off with the shortest duration (7 days) and the maximum allowed calories (600). Start with the easiest option for the hardest task 🙂 that’s my new motto. See ya Hermie. No glucose. No carbs like usual. Only 600 calories a day. I feel like I have my armor on and I’m headed into battle again. My MRI is in two weeks, Saturday April 20th. The results of this one are huge. If the area they’re ‘watching’ grows, Dr Liau said they will want me to do radiation. The thought alone makes me ill. So much is riding on this. You’d think it would get easier, and easier, but as things progress it ups stakes.

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Over A Decade Later

How fun is this, one of my college roommates was in town for work and we were able to meet up for a dinner. So fun! We hadn’t seen each other for 11 years. Isn’t she just the cutest!?!? Christel and Ashley joined us. It was hilarious, and fun, and I was again reminded of how lucky I am to have such a wonderful life 🙂 Yep. Those definitely ARE Texas shaped sunglasses. Thank you for all of the uplifting comments on the blog, and the helpful hints! I should clarify a few things… 1. The majority of my days are on the restricted ketogenic diet. I have lost about six pounds because of it. Some days, on the weekends or if I’m just in the mood to eat more, I eat the generic ketogenic diet. It’s very important to restrict my calories in order for the ketogenic diet to starve my brain tumor or alleviate my seizure problem, but in order for me to stay on the diet I have to allow myself days when I can eat as much ketogenic friendly foods as I want. That way I don’t feel deprived. I have been in ketosis for almost two weeks now. I have not cheated, nor have I wanted to. Not yet anyway :). I keep my carbs lower than 20 grams per day. If you want more information, as Scott commented, check out Dr Thomas Seyfried one of the foremost researchers on the ketogenic diet, brain cancer, and seizures (along with other diseases). 2. I have been taking lion’s mane mushroom (H. erinaceus) supplements in order to boost my t-cell growth and macrophages which together increase your body’s ability to fight cancer. However, thank you for the anonymous comment lion’s mane stimulating nerve growth factor (NGF), and…

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