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brain surgery

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UCLA Tumor Board Results

Dang it if brain tumor life isn’t confusing. At least in my world! I can’t be the only one who has these types of yoyo results. I mean, it’s better to have differing results than a truly horrible, obvious situation. The ups and downs, though are insane. If you don’t want to watch the whole video (3 min 44 sec), the short is: tumor is growing, albeit slowly. (Think millimeters.) I believe the two treatments I added in the past two months, are helping – who knows, maybe the tumor had grown more in the interim, and now they’re even shrinking it? Who knows! I rule out nothing. My neurosurgeon at UCLA offered a brain surgery to remove whatever she can, or she said she is “comfortable” waiting 2-3 months for another stealth (pre-op) MRI. I opted for the latter, and agreed that if I had furthering symptoms, I would move up the scan. Some people might think I’m crazy to push-off brain surgery, since I have a growing tumor in my brain, but there are inherent risks involved. Remember when I had to learn how to walk, talk, read – learn the alphabet again?! I do. We will never know for sure if the decisions that we make are the best ones, but a decision is what we have before us. For now, we try to do the least invasive approach. If that isn’t enough, we will evolve as we always have. It’s confusing because the symptoms of my seizures are the same symptoms that tumor growth would cause. The main take away right now is that it’s important for me to stay the course on exactly what I’m doing treatment-wise, and perhaps even add a few non-toxic, whole body health boosting things. And I really need to lower my…

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New Neurosurgeon, New MRI Scheduled

Just snuck and took a video in my first neurosurgeon’s apppointmet at Swedish, in Seattle. At the end of the video you can see a slice of my brain, which includes the brain tumor. Yuuuuck!!! It’s gross. Every. Time. I. See. It. The image is from back in April, so it’s not even current. On this Thursday, I have a MRI and cerebral fluid scan to evaluate the growth, and see how much blood is going to the tumor. The fluid scan tracks the metabolic activity which requires more blood than regular tissue. Will meet with a new neurooncologist after the scan. Then I will upload my images to UCLA’s system and hope I get in for next Wednesday’s tumor board. It’s frustrating that they only review cases once a week. If there’s a backlog it can take weeks, even a month, to get results on treatment recommendations. Big day today, but an even bigger one on Thurs. Fingers crossed that all of my little issues are treatment effects, not tumor growth. I believe in miracles. And in my opinion, it only takes one to change your life.

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Bus Bacteria Bad. Brain Bacteria Good.

Hey Guys, What is it about summer that causes it to go faster, and faster, and faster, until you lose your mind? Or get sick. I get sick every few years, and never in the summer, but lucky me, that’s exactly what just happened. I must have licked my fingers after touching things on the city bus or something. (Gross!) But life doesn’t stop when you get sick – kinda like cancer. I’m busy with gloriously fun things like promoting the MLD docu-series with interviews, corresponding with tumor patients/caregivers, and visiting with out-of-town friends, all peppered with doctor appointments. I’m not sleeping well because of headaches, which is a constant reminder of the fact that my brain tumor is growing again. I’m fine during the day, I’m so busy that I can’t even keep up, but at night, as soon as I’m vertical, the pressure in my head grows intense. It’s come to the point where I am back to relying on headache medicine. I hate having to do that. I’m grateful that my seizures have remained stable, though, which feels like a Christmas miracle. I like to think that the headaches are because I’m doing too much, trying to conquer too many things, maybe I’m not organized enough, anything but the mass of rogue cells multiplying in the folds of my brain. Last weekend I turned 36, and although birthday goals are a newer thing for me, I have it in my head that I want to live past age 40, and not be sporting a wheelchair/walker while I enjoy my cake (although decorating those items sound kind of awesome). That fear is based off of my horrible luck with brain surgeries. Granted the most recent one healed pretty well, but man if that second brain surgery didn’t give…

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In All The B’s

*Written somewhere over the midwest, as I flew home from NYC late last night.* I never anticipated growing up. I mean, who does, or we would choose to wear sunscreen at age 4, and I’ve never seen a child apply SPF by choice. When you get this crazy diagnosis it’s like living in an alternative universe; you’re instantly catapulted into the raw threads of life. You’re 29 and 99, all at once, wondering where your life went. My favorite part of cancer is that there’s people whom I’ve fallen in love with. They’re kind, they’re gracious, they’re real, and explosively smart. They’re honest, we quip, tease, and I can’t believe that somehow my life collided with theirs. I know that I would have crossed paths with other people in my sliding doors life, and they would have been deep, and knowing, encompassing, challenging, hilarious, so I know you don’t have to be a cancer patient, or caregiver, to be “enlightened” – yuck, I don’t even like that word in the context. I’m swirled with people of all backgrounds, different histories, and the longer I live, the happier I am – if that’s possible. Who would pick cancer? Not me. And I’m not convinced that I needed to get cancer to meet these souls. We could have met when we were in a shared taxi, at a resort, on a hiking trail, in a public bathroom. I mean, come on, you guys know me – a person is just a friend I haven’t met yet. I’m expected to do another brain surgery in Oct, and that was put off from May. I kinda want to point out what a bad girl I am, but it’s not that simple. I needed proof to make sure that when they saw into my skull…

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UCLA MRI Results: Surgery Needed

I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don’t know if I could stomach a fourth surgery, but before I can commit to that anyway, I’ve requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation. It’s confusing to hear conflicting results from two different centers, but that’s nothing new for me. At this point, I’m waiting for insurance to approve the scan. Next, we’ll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek. As always, I’ll keep you abreast. (That word always makes me laugh, so I had to throw it in there.) PS It’s my brother’s birthday today, so if you see him, please don’t say anything until tomorrow! xo

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Bacteria on the Brain Article

Holy cow this is amazing! One of my buddies sent me this article, probably knowing that not only do I love hearing about brain cancer/tumor treatments, but also I am enthralled with bacteria and viruses and how they can relate to cancer growth and treatment. If I ever have to have a fourth brain surgery, I want my brain flap soaked in Enterobacter aerogenes too – and what a surgeon! Dang. A true doctor, and true healer. I love problem solvers. If you have any problems viewing this amazing article please click here: Bacteria on the Brain. Your browser does not support iframes.

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The Post-Traumatic Stress of Cancer

As you guys can tell, I haven’t been posting much. I’ve been trying to soak up as much life as possible. There’s so much to see and do and experience. Half the time it’s just around my own neighborhood, but also, since I’ve completed the years of Chlorotoxin, I’m free to eat and drink whenever I want. I don’t have to administer medicine every four hours, and it’s freeing. It’s been weird, and a daze and a miracle and a gift. To feel human again, and “normal”. It took a few weeks to absorb it. I kept withholding food and water because the treatment protocol had been ingrained into my system. To be able to drink water whenever I want, all day every day, has been the most exciting thing. It’s not that the treatment protocol was so hard, necessarily, but to go without water for four to five hours a day when dehydration triggers seizures has certainly been a challenge over the past two years. It was debilitating. The only thing that I fear more than a seizure is a recurrence, just to put it in perspective. Honestly, I’m literally terrified every second of every day. I’m able to shove it off and distract myself and breathe and align myself with gratitude, but that when the night falls, when silence creeps across the threshold, my mind gets louder and louder. The cracks in my brain, the hot spots, the unique headaches, start talking. They nasally laugh and tell me in their jackal voices that I can think I’m winning, but they know something I don’t. They scoff and trip my walking mind. They tell me I’m dying, that everyone with this cancer dies. So I don’t sleep well. I read my books, my lids drag down. I turn off…

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San Juan Island Marathon

I have exciting news…I just finished talking to Dan and after getting the green light, I have decided to train and attend the Kings Market San Juan Island half marathon on Sunday June 16th. I’m so excited!!! I am so incredibly thrilled to have a new goal. I can’t wait to match my longest run, only this time it will be 8 months after a brain surgery. Depending on the schedule of shots, I may have to get a shot in the days before or just after the race, I won’t know for sure until May. Either way, if I’m tired, I figure I will walk if I don’t feel well 🙂 I’ve already worked out the training schedule and I will be able to train during the day, during the week. This is going to be so fun!! I’m shifting the schedule so that my runs start on Monday and my long run is on Friday. If anyone is interested in joining, I always love to see smiling faces. This is going to be a great accomplishment. And I can’t wait to have it happen in my home town 🙂 I have this planned so that I can run in the morning then nap in the afternoon. I don’t want to jinx myself, but it seems to be the perfect plan! Woooo hoooo!

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Possible Exclusion

When I can’t sleep, I read about the success of my chosen treatments. Whether it’s the results of the current dendritic cell therapy trials at UCLA (around the US, or even the globe), or the supplements and how they selectively induce apoptosis in glioma cells. When I’m afraid, I read. Last night, while trying to get more information, I stumbled upon the Exclusion Criteria for my clinical trial and right up there, first on the list, #1…….Subjects with an active infection. AAAAAH!!! My temperature is gone, my throat still hurts but it’s getting better. I have been sitting on my bum or sleeping. This is so frustrating! The whole point of this trial is to train your immune system to attack the tumor. If my immune system is down the vaccine will not be as effective, perhaps not effective at all. I understand the exclusion, and that means I have to get my act together. Looks like I’ll be laying low. I even asked Dan to pick me up a face mask for my flight. Yep, I’m going to be one of those weirdos that will be wearing a sickie mask, the bird flu kind, it’s ridiculous. Oh well. Gotta do what you gotta do. I’m sorry if I’m not returning very many texts, emails or phone calls. It’s not that I don’t think about all of my amazing friends – I do! All the time. It’s one of the things that keeps me going, remembering all of the laughter, and fabulous ridiculousness of my life. But, it’s true what they say, when you’re fighting a beast like cancer you have to focus your priorities, and although I wish it wasn’t the case, I have to focus all of my energy on resting and preparing for my trip. I’d rather…

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