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Converting the Baltimorites

Over the weekend Dan and I hosted Jess Abu and her husband Dre. Here are some of the highlights… Clearly we don’t take ourselves that seriously, which I think is why we have so much fun! From Susie’s Mopeds, with the protective rainwear jumpsuits, to all the ridiculous sunglasses we found for $2.99, to the electric boats on Lake Union, and everything in between. Jess is still here for a few more days – I wonder what other trouble we can get into?! Every day is a gift. Every laugh, every memory is just icing on the cake.

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Podcast Interview “Living With…”

I had the honor of being interviewed for the podcast, “Living With…” recently. Here is what this iTunes channel is all about (in Tom’s own words):  Description Living With… is about those living with cancer and other diseases or challenges. It’s a community of inspirational people who got some bad news, were dealt a terrible hand, a horrible diagnosis, which changed their lives forever. I have Myelodysplastic Syndrome (MDS), a progressive bone marrow disease which robs the body of its ability to produce blood cells and fight infection. For some reason the body stops making proper blood cells, leaving the body weak and vulnerable. Treatments include blood transfusions, drugs to boost blood cell production, and ultimately bone marrow transplant. My levels have declined considerably. I take drugs to keep my levels from declining even more, but no one knows how long they will work. I get routine blood tests to monitor my levels. I used to be an avid runner and have run several 5k, 10k, half & full marathons. I suffer from lack of energy and fatigue, but I’m able to work and do most things if I pace myself. Now, I am a walker, but I haven’t given up. I miss running, but I’m alive! The Living With Podcast is my way of bringing you interviews with inspirational people who are living with cancer, illness, and other challenges. I feel we can learn a lot from them, be inspired by them and ultimately live more meaningful and fulfilling lives. I hope you will listen to the podcast and will be entertained and inspired! Here is my interview: https://itunes.apple.com/us/podcast/living-with…episode-023/id975036684?i=347582559&mt=2 It’s a little bit long because, hey, it’s me – I was born talking – but you could listen to some, go take care of some stuff, then come back, etc….

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Chelan Man Triathlon Recap

Dan and I had so much fun at Chelan Man yesterday, it was AMAZING. I had always been intimidated by multi-sport races, the transitioning made me nervous. Not to mention I’ve never had a decent bicycle, or swim goggles, etc. We didn’t have the trendy triathlon gear, and we didn’t know what we were doing. We went into this race with two goals: to complete it, and have a blast along the way. But by going into this experience not worried if we’d look dumb with the wrong outfits, and nubby mountain bikes (borrowed at the last minute), by going just for fun, just to live and try something new, it removed all the pressure. Because it’s not about what other people think. It’s not about proving stuff, or worrying about trivial things. That race was for pure fun. To challenge myself and get out of my box, to try something new. As for the race itself, we fell to the back of our “wave” of swimmers to have some space, but just a few hundred yards from the shore Dan was kicked in the head and took on a bunch of water. It took us a bit to get his lungs cleared, and for him to get a good pace again. One of the volunteer lifeguards even tossed a frog floaty for us to share back and forth as we swam. We kept that for the duration of the swim leg. Yep, we were THAT bad at the race. But it was so funny! Dan and I were just laughing and swimming and enjoying every second.  From the swim we transitioned to the bike. It took a bit for me to get my rash guard, helmet, socks and shoes on, but once we both rehydrated we took off up…

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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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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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How to get into the Duke Polio Virus immunotherapy trial for GBM

Hey Friends, I received an email this morning from Life Extension (the supplement company) with details about Duke’s re-engenineered polio virus immunotherapy that is having amazing results. There are whispers of cures, and miracles. It’s not something that’s applicable for me in my stage of cancer, but I’m here to help you get the information to see if perhaps it can help you survive. There is even a phone number for a direct call to be evaluated for inclusion in the trial. I hope this works for people. Good luck! Fight on my friends. Look outside the box, ask questions, know your needs, and keep your eyes open.  Enjoy! Jess Duke Polio Trial for Glioblastoma In 2013, Life Extension® announced a discovery that added precious years to people stricken with a lethal brain cancer called glioblastoma. The drug shown effective was valganciclovir, which is typically prescribed to treat cytomegalovirus.  In 2015, CBS News 60 Minutes featured a story about research emanating from Duke University Medical Center showing complete responses in terminal glioblastoma patients who were administered a re-engineered polio virus directly into their brain tumor. The re-engineered virus prompted a powerful immune response against the viral-infected cancer cells that in some patients appear to eradicate their glioblastoma.  The Magnitude of Human Carnage  Each month, 1,000 Americans die from glioblastoma. Up until now there was no cure. Survival from time of glioblastoma diagnosis averages only 15 months.  Valganciclovir extended survival to over four years in some studies. Doctors are cautiously optimistic that this re-engineered polio virus may be curative.  How to Enroll in Duke University Study If you or someone you know suffers from glioblastoma, here is the patient criteria needed to participate in this Phase I clinical study:  You must have a recurrent glioblastoma (meaning you must already have failed at least one conventional treatment).  You can only have 1 area of tumor.  You must be fully functional, that means totally coherent and be able to walk and…

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Nasal Down Sublingual To Go

Can you see….? There is no chlorotoxin left!!! My nasal applications are completed. No more every four hour applications. No more hanging over park benches, and airplane seats with my head at the floor and feet on the ceiling. The things I have done to keep on this crazy schedule for the past few years has been wild. Everything has centered around the applications, all of my sleep, my food and drink, all of it. I still have the oral applications for a few more days, but when that’s over Dan and I will celebrate and high five, and maybe do a special dance in the living room, or maybe on the lawn. I will sleep in for once (maybe twice) and nap whenever I want. That’s the most joyous part of this new chapter. I will enter a stage of full restfulness. And it is so needed. I’m never fully rested, and it effects the seizure activity. Maybe this is going to be the end of my seizures. What about that! Why not, really? It could be the saving grace. I’m just exhausted from tracking all of this stuff. A break. Wow. A break to celebrate and all I want is to be able to sleep. I may sleep for four days consecutively when the mouth venom ends next week. Glorious. I am counting down the days. I’m coming back into the land of the living, and it has never felt so perfect. I never thought I would get back to being excited for my tens and tens of pills multiple times a day. Aaaaah the good life of pills upon pills upon pills.  I don’t know what I’m doing, but I hope I’m able to do it well. That this cocktail of approaches bode well for my body….

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To The Moon!

Do you guys remember that the year I was diagnosed (2010) I was training for an Olympic Triathlon? Well, obviously that crumbled, but this winter I decided to use my good health to take a tour of not what could have been – but is about to be. I don’t know if that makes sense, but what I’m trying to say is that I’m snatching up opportunities to challenge myself; to get back to living the life I was born to enjoy. That includes challenging myself physically like the mad runner that I always was. One thing that I’ve learned about myself is that competing, although awesome, isn’t as fun unless you don’t take yourself too seriously. Wow, how is it that I can speak in double negatives, yet I can never, for the life of me, understand it when others do. (Or maybe that wasn’t a double negative. The mystery is on). I digress. So, a year or so ago, someone stole my bike, the bike we would use for speed and comfort. But with friends like ours, it is of no surprise that my buddy Laura lent me her 6 speed beach cruiser to galavant around the hoods of Seattle. She’s rusty, but trusty, and when I hit the never expecting bump from our evergreen roots, the bell dings on its’ own. I am a sight to see, I’m sure, if not for a lesson in humility. Next month, I am coming up on the 1500 meter swim (haven’t swam since dunking myself in the sound on Saturday and it was a real in and out moment), the 25 mile bike ride (just imagine the cacophony of dings as I race around the course), and the final 10k which is about 10 times longer than I’ve been running….

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Go and Go Faster

Evening, friends! Sorry for the break on the blog, I’ve been assessing and working on my seizure issues. What I’m learning is that the less tumor work, and less technology I use, the fewer the seizures. It’s great news – to isolate the issue – and at the same time it sucks. I am not the woman I once was. I keep trying to be a woman who can do it all, chew gum, rub her belly, and walk, but I can’t. I try and try then I trip and seize. It’s an almost impossible lesson to learn. It is very hard to slow down, to cut back on tumor research. I’m still keeping up with the Cancer Compass thread which is profoundly informational, with updates daily. I’m still getting my updates from Al Musella’s website, and still looking into studies every day or two. I can’t help it, I get curious, something will pop in my head and I’ll have to find answers. And I’m still answering brain tumor emails, still helping those with recurrences, those newly diagnosed, and general questions. I’m just not actively trying to solicit patients to help like I had been. As you guys know, I don’t do this for money, I don’t get paid, I’m just trying to pay it forward. One thing that I hate about brain cancer, which is specific to our group, is the freaking seizures. As if it wasn’t enough to go through everything: the brain surgeries, the brain damage, the speech therapy, physical therapy, the recurrences, the research and constant fear of recurrence. Above all that, we get trapped in our bodies unable to trust our brains and our being. When you’re epileptic, your body is not your own. When you’re epileptic, you live in fear. When you’re epileptic you can’t…

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Eat Wild. Eat Well.

Who do you want to be? What matters to you? What do you want to accomplish in life? These are questions typically reserved for high school juniors or seniors, but they don’t have to be. It’s a question I routinely ask myself, and with time, the answer continuously evolves. But at the core, the basis of who I want to be, what matters, and what I want to accomplish is very concrete, but broad, and has no end date. I want to be a good steward of this awe inspiring Earth. I want to embody a kind heart that loves deeply. I want to learn about native plants mostly edible, but also non-edible. I want to learn about true nutrition from wild plants, how to help sustain Dan and I through gardening. How to harness local resources like grey water systems, or rain barrel water retention systems. To work toward independence. I dabble in making things from scratch, down to grinding the nuts into flour for baking. I recently made kefir from raw goat milk. I want to see how things work. I want to recognize that all foods are not created equal. That animals, especially the ones who feed us, are living creatures that deserve kind lives, not to be jailed in tight quarters with broken bones, an entire lifetime of misery. You can’t nourish your body, and soul with another living creature’s sorrow. You recognize what your body feels like when you’re stressed, with all that cortisol surging through your body. Imagine an animal stressed, and depressed for its entire life, then you eat it. The product of the meat is inferior, it’s only logical (not to mention the poor animal). There’s science to back it up. We’re making decisions, and there are consequences. That extra money spent…

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