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seizures

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My Biggest Medical Asset

I have something that will help the cancer patient in your life, something that has been helping me for years. Why didn’t I think of sharing this sooner? I’ve eluded to it, even directly recommended it, but I’ve never included (that I can remember) a true description with photos. I’ve been sharing this info one-on-one with patients and caregivers, but for whatever reason, it didn’t occur to me to officially write something on how I stay organized in the wild wild world of cancer. Any large accordion style briefcase will do. The more slots, the better.Spring for heavy duty, this thing will take a beating with the amount of use it will get. I get copies of every medical record, and I carry this with me to all of my appointments.I have saved many a headache, and lots of time, during meetings because I have my own copies of my various pathologies, radiology reports, etc. This is a mini case that has its own slot in the big case. It holds every single one of my MRI and F18-Dopa PET scan disks. I’m able to pull out any disk that I need, in a matter of seconds. It’s astounding how helpful these disks have been in appointments.It has been common, in my experience, that new doctor appointments often do not receive my records in a timely fashion. By carrying all of my document and disks with me,I don’t get held up with delays or partial information from my doctors, because I’m able to provide the data for review and assessment. This briefcase has been worth its weight in mom’s cookies. Recently, at a new neuro-oncologists’s meeting, the doctor even asked what I do for a living. I replied, “This.” He responded by saying, “Want a job?” For a woman who has disabilities, who…

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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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Cancer Convos: Episode 2 Fertility

I have been dragging my feet a little bit on posting Episode 2 of Cancer Convos with Crush & Coconuts, for two reasons: 1. We recorded the episode 45 minutes after a seizure that really wiped me out, so my drugged up and exhausted state is cringeworthy. 2. It’s a very personal, very raw video that is clearly difficult for me to open up out. As you know I emote, and share in written form – to expose myself in a video is much more intimidating. There’s no way to hide your face, the tone of your voice, the tears. I don’t even remember recording, as I blackout after seizures, usually not remembering anything for at least 24 hours afterward so essentially, I’m watching this new with you. Without further adiau, please enjoy our experiences with fertility as it concerns with cancer. And as always, if you have anything to add, please post comments so that others can learn from your experience. I always love comments on my blog posts, but I imagine the most beneficial place would be on the YouTube channel episode. Thank you for watching! 🙂

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Reliving the Glory Days

Morning Friends! Dan and I have our triathlon this weekend. Remember that? Yikes. Have we been training? No, not really. We’ve ridden our bikes around the block. We’ve jumped in the sound a couple of times. And we jogged two miles last night. It’s almost as if we’ve forgotten that we’re not in our 20’s anymore. Fingers crossed for no injuries! This was all a harebrained idea to relive my glory days, the days before diagnosis. When I was diagnosed in 2010 I had completed two half marathons so far, and I wanted to take it further. In fact, I literally just went back in my emails to dial in this message from two weeks before I was diagnosed: Megs, In three weeks I’m off puddle jumping from Iceland, to Sweden, to Poland, to the United Arab Emirates and back. It’s a really quick trip though, only about three weeks. I’m really excited! Going to go see the Polish family and then down to the Middle East to see one of my best friends from college – quite the adventure! You’re tiny enough, you’d probably fit in my suitcase. 🙂 The Triathalon is in Lake Chelan, and it’s called The Chelan Man and there’s a lot of different options. It’s on the weekend of July 17th/18th. There are different races on Saturday and on Sunday. I think I want to try the Triathalon Sprint: http://www.chelanman.com/index.php?page_id=302 The Olympic Triathalon looks great too though – just really challenging. Might be really fun to do as a three person relay though – but at the same time I kinda want to try an entire three-leg course. People could stay at my place, or we can camp out on the riverfront at my parent’s house – that would be fun!!! Jet skiing to get us…

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More Seizure Activity

Damn it. I had a little seizure episode last night. It wasn’t a big, aggressive, episode, but still very annoying, and frightful, and frustrating. I’m grateful that I’ve been able to quell a lot of the seizures, but even though they seem to be rarer and rarer, it’s still exhausting. It was such a freaking shame too, I had gone to a comedy show with my girlfriend Christel, and when we sat down we ran into a bunch of girlfriends from Friday Harbor. “Of all the gin joints in all the towns in all the world, [they] walked into [ours].” The show had me ripping my side in laughter, my face burning with blush from content, and doubled over in pure shock, then I noticed that I couldn’t feel my right arm, that it was numb, even though the room was very hot. The flickering of the big screens all over on the walls at the venue, the loud music and voices, combined with that heat, I felt an aura coming on and made a beeline for the exit. Thankfully Christel & Erin both knew what to do. Within moments I had pills under my tongue, enough ice water to service an international flight, and I was feeling better. We stopped the seizure from progressing, but I was down for the count. My arm eventually started gaining some sensation, but I was walking like a drunken sailor, and felt incredibly weak. Boy do seizures suck. I live in a world where even the most fundamental event of a comedy show can put me into a seizure tailspin. I still don’t know how to protect myself completely, from seizures, unless I just stay home all the time. Now I’m ruined for the day. I have a seizure hangover. My brain feels…

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Out of The Shadows

Ugh, the dread in my body in having/needing to write this post has been weighing on me for quite some time. Like months. How embarrassing! Why can’t I be fearless? Why didn’t I just start talking about it from the beginning? That way there wouldn’t be a buildup. I avoided it because I didn’t want to deal with people’s opinions. I hate bringing up controversial subjects (unless it’s face-to-face where there’s an open dialog), and I hate to be judged – which is weird because I have been taking control of my health, no matter the cost, definitely to the chagrin and disapproval of several of my original doctors. I’ve been dragging my feet because I don’t know where to start. And there are so many details as to what helped me make my decision. I know that I can’t include them all because it would be exhausting, and verbose, and complicated. I’m nervous because I feel like I’m not going to be able to really explain myself. Suffice to say that I have joined private groups, and read the research, and talked to, and met with, 40-50 cancer fighters who have shared their private stories about personal cures and cancer stabilization. What is it, you ask? It’s hemp oil. Also known as Phoenix Tears, or Rick Simpson Oil. You can also just call it medical marijuana or marijuana extract processed into an oil. There’s a lot of names out there, and they’re not all exactly the same, but they’re pretty similar. I have several cancer friends who are using it in very large doses (1-2 grams a day) with dramatic results, and I have other friends who take it in small amounts and they’re still getting results. Does it work for everyone? Unfortunately not. But, as a person who…

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How do we celebrate?

I never thought I’d feel this way. I never thought that I would use these words, and for good reason. Doctors don’t use the term “remission” for brain cancer, because “it always comes back”. At least that’s what all of my doctors have said (minus my neurosurgeon at UCLA, I haven’t heard her speak in absolutes). But today, I feel like I’m in remission, that I’m cancer free. I’m sure I still have cancer cells in my body, like we all do, but something feels different. I feel lifted, and whole, and healed. Does that seem crazy? It feels crazy, but it feels right, like I’m on the correct path with the appropriate protocol.   I don’t want to jinx myself, so please knock on wood, but for the first time since diagnosis, I feel human. I feel normal. I feel like an epileptic (that may never change), but not a cancer patient. I’m continuing all of my current treatments, but now I’m doing it by choice not out of duty. And I know that this shift alone will do wonders for my psyche. I never thought that my MRIs would get pushed out to 6 month intervals. It crossed my mind once or twice, but it was like imagining a unicorn. A wonderful thing to smile about, but not a reality. But the world tricked me, see – unicorns DO exist, and I love them! I keep thinking about this insane tumor diagnosis and how much it has changed my life. I have gone through so many wild things, like the awake brain surgery, or the hematoma that caused major brain damage, forcing me to relearn everything from using a fork, to learning how to run again, and read again, and regain my vocabulary. There were times when I couldn’t…

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Joining My Herd

My lovely, timid, garden finally produced her first cucumber! (I’m pretty sure it’s my fault for under-watering.) There is nothing more delicious than snipping a warmed-by-the-sun cucumber, and taking a big ole bite. The flesh was soft, giving way to a watery crispness. Yum! I have some pretty exciting news. Remember when I mentioned that this year, my 34th, would be a time of challenges? That I was redefining fear in my life? Well, on Sunday I am flying out to Moab, Utah for a week of rock climbing. It’s through a program named First Descents. I applied expecting to hopefully make it into a program for next year, but just a few weeks ago I received an email about a cancellation so I quickly started jumping through hoops. The program I was trying to get into was surfing in Santa Barbara, and I was stoked, but after my physical and final documents made it to their medical team, it was decided that because of my history of seizures I’m not allowed in their water programs; I at least have to be seizure free for a year. (There goes the river kayaking, too!) But, as a very kind gesture, they sneaked me into a rock climbing program instead. I’m so nervous.Oh ya, did I mention that all the attendees are cancer fighters and survivors?!? That’s the part I’m most excited about. I’ve written about my isolation before, about how hard it can be when you’re fighting tumors or cancer, that you can’t relate on the same level with your friends, or even your family.“First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing…

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Out Living

Oh I have been laughing at myself. Me and my big book. Me talking about my fancy new brain. The second I started typing about my progress, Doubt started creeping in. He’s such a jerk, that Doubt. I’m macabre in nature, and can not help but wonder if this next MRI in October will prove to be the one where Hermie shows back up. Life is too good. It’s going so well. When Doubt spoke up, I literally laughed out loud. The irony of life. You never know when your luck will end. All I can do is enjoy each day, seek out the big books, strive to be happy, push boundaries. This past weekend Dan and I went camping in north central Washington. We brought friends, new and old. My cell phone quickly drained as we drove closer, and as I unplugged from the rest of the world, my vision became clearer, the sunshine brighter, the river much more blue. I took deep breaths, inhaling the dry wind. I allowed the breeze to ribbon around my neck, sparking private smiles. I’m not much for camping; I’m a girl somewhat tethered to electricity, to amenities. But, man, did I enjoy myself. I swam and swam, lap after lap, in the river. I goofed off with the kids. I sneaked away to read my books. I went to bed early with the sun, and rose with the quail as the sky pinkened. I slept hard, hard on the hard ground. I have bruises on my hips, battle scars. I look at them with pride. It reminds me that this is my year of challenges, of getting out of my comfort zone. The bruises remind me that I’m alive, that I’m out there living. Where did the girls go!? Dan caught us…

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Winking at Fear

Yesterday, I turned a year older. And, it has officially been 4 years, 3 months, and 25 days since I was diagnosed. I have had three brain surgeries. I have tried almost every brain tumor diet on the planet. I have gobbled hundreds of thousands of pills. I have researched. I have exercised. I have meditated. I’ve dodged seizures; I have endured them. They’ve injected shot after shot to boost my immune system, and to fight my tumor. I’ve done the high dose IV drips. I drop venom in my nose, and I swish it in my mouth. I’ve traveled the country, and around the world, to meet with doctors for second opinions, for surgeries, and treatments. All that, and so much more, and yet I feel like an imposter, like this isn’t my life. I got the email yesterday, a great birthday surprise, that I am included with five other bloggers to be posted on the National Brain Tumor Society website. As I read the other posts I felt like a voyeur, like I didn’t belong. It’s confusing because I relate to so many of the things that they wrote, yet, with others I have no experience: radiation, chemo. It’s as if they were long lost family members; we had never met, but somehow I recognized myself in their faces. I loved the variation of stories, of perspectives, of journeys. The voices, although different, carried similar threads of hope, fear, frustration, gratitude, and determination. Everyone had gone through a lot, whether it had been surgery, or treatments, or a combination. But some of these fighters truly astound me with what they are conquering, what they’re capable of enduring. I read the blogs yesterday but I keep coming back to reread them, trying to soak it all in. When I…

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