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 the hill. The bike felt really weird though, and right as I pumped up to the top, my tire popped off. No joke! I called to the spectators and said, "Help, I think my chain or something fell off!" A guy came running and then another guy and all of a sudden it felt like I was in a Nascar pitstop, power tools whizzing, within (I swear) two minutes I was back on the saddle headed away. Rolling away I was low fiving spectators and hollering thank yous. I could hear Dan behind me chuckling. 

The bike ride was probably the most fun; Dan pulled up the rear and let me set the pace. There were water stations along the way and I would roll up slow and tease to tell them I was coming through the car wash, then they would spray me with a hose, or bottled water. It felt so good! There's nothing better to wake you up than being doused with icy water on a hundred degree day. Quite shocking, but it'll certainly cool you off.

When we transitioned from biking to running, we racked our bikes, drank some more water and started running, but almost immediately people started hollering because we were running the wrong direction. Ha! We are the worst triathletes! We might as well have been Abbott and Costello. The run was a little tough because the heat had really climbed. The route was out along the highway, the heat swirling up from the asphalt. There were a few times when I worried I might be in seizure danger zone, but Dan helped me take my rash guard off, doused it with cold water, then draped it over my shoulders. My icy cool cape really did save the day.

You'll see below that my mom took lots of pictures. My parents are so wonderful. They came with us to the race, and cheered us on during every leg. It was just shy of a hundred degrees very quickly and to have my parents there cheering, and laughing with us, was a lot of fun. The day was one of my favorites, one that will go down in the record books. 

I can't believe we did it. I can't believe how hard we laughed (mostly at ourselves). It just goes to show that everything in life is really fun, even when you don't know what you're doing. Even if there are literal obstacles. Dan was legitimately kicked in the head. My tire popped off. We ran off in the wrong direction, and yet it was one of the most fun days of my life. 

The Pit Crew: My Parents

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 into the competitive mood of the race?!?! 

-Jess

As you can imagine, I never did get to take part in Chelan Man in 2010, and the trip was cancelled. My life, from two weeks on, was forever changed. It's bitter sweet to try and compete in this race (although I use the term "compete" lightly), because it reminds me of my old life. My carefree life. That ignorance that allowed me to think that my problems were important. It's going to be fun, and hard. It's supposed to be 97 degrees as a high on race day. Dan is doing it with me, though, and we'll just have a lot of water on hand, and seizure medicine as a given. This will be tricky when sun, dehydration, stress, and heat all trigger seizures, but it's something I feel compelled to do. To live my life and try to get back on track. To be the person I once was, but better. Jess 2.0, new and improved.

I'll post pictures next week, if I survive that is. Ha! Of course I will, I've navigated tougher waters that's for sure.

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 the lamp, I sigh that deep sigh, and I start to drift. And just between thoughts and fantasy, my body jerks and tenses. My pores prickle and sweat. My heart races, my head spins with delirium. I think of everything wrong that I've eaten, every supplement I forgot to take that day. I kick myself for not exercising, for not taking my care more seriously. Because the truth is that I'm not as diligent as I used to be. My diet is not on point, I am not the machine I once was. I want to live, but at the same time I want to LIVE.

I don't think I'm alone in the late night self loathing. I don't think I'm alone in the late night overthinking. I wish it was something I could turn off, and boy do I try, but it's in my psyche. It is who I was from the time I was in the womb. It's in my core, and as much as I meditate, as much has I repeat my mantra, "Thank you. Thank you. Thank you." It's not enough, this doubt, this overactive mind is on a cellular level.

So I live, and I ride my bike, and go for walks with my walking group. I garden, and laugh with friends, and play with our dog, and snuggle with my cat. I paint, and I continue to be awe of the fortune of my life, my health. But deep down, I continue to be scared. My body has memories of pain, a deep sadness, the fear of death, the throwback of when I was diagnosed, when I was awake and they were cutting into my brain. The flashbacks to the recovery, relearning how to read and use a knife. I feel great, I love my life, but I have post-traumatic stress that I live with, and can't seem to fix. And the fear is that I don't know if I ever will.

Thank you to the sweetheart who anonymously commented on the blog on the 4th of July weekend wishing us a wonderful holiday. It made me feel incredibly special. We went up to Friday Harbor our hometown to spend time with friends and family. It was magical. We even got out on a friend's boat to do some fishing and were surrounded by a pod of Orca whales. It is not lost on me that I was raised on a piece of heaven. Friday Harbor is a panacea to my soul.

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: 

1. You must have a recurrent glioblastoma (meaning you must already have failed at least one conventional treatment). 

1. You can only have 1 area of tumor. 

1. You must be fully functional, that means totally coherent and be able to walk and do things on your own. 

If you said yes to all 3, call and speak to Brittany at 919-684-5301and press option 1. Brittany will set you up to speak with the nurse who will continue with the medical screening process to see if you qualify to enter the trial. 

Questions Life Extension Asked Duke University

Question: How many glioblastoma patients is Duke accepting? 

Answer: There are no limits at this point. People have to qualify after they provide us with their medical histories and complete all the paperwork. If accepted, they then meet the nurses and doctors for their appointments. 

Question: How long is the wait to begin treatment? 

Answer: Treatment starts after the patient meets all the appointments and completes the screening. Patients start treatment as soon as everything is in order. 

Question: Are younger people given preferential treatment? 

Answer: No. 

Question: How many people are not getting treatment because of the favorable 60 Minutes report? 

Answer: No one is rejected. We have had a lot of calls, but have been able to handle them. The pre-screening questions help to eliminate wasting time so we can continue the screening process and see if people qualify for the study after all the preliminary work is done. That is based on them meeting their appointment times, sending in the paperwork and meeting all the other necessary criteria, etc. 

We Applaud Duke University…
But More Lives May Have Been Saved 

It appears this re-engineered polio virus therapy could have been introduced sooner had it not been for bureaucratic hurdles regarding human clinical research that Congress has to fix. Glioblastoma is considered virtually 100% terminal and no human should be denied access to an experimental therapy that has a credible chance of working. 

View the 60 Minutes segment about this new treatment for glioblastoma.

To inquire about qualifying for this Duke University study, call Brittany at 919-684-5301 and press option 1. If you meet eligibility criteria, Brittany will set you up to speak with the nurse who will continue with the medical screening process to see if you qualify to enter the trial.

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. That I may heal.

It's a new era, and I will evolve with the times.

I'm still soaking it up. 

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. Not to mention this race is at Lake Chelan where it will easily be 90 degrees by early morning. Dan has gallantly decided to join me, although I don't know how seriously he is planning on taking it. He may leave me in a swirl of bubbles and dust.

From This:

To this:

My Trusty Medicine in The Basket At All Times

On Saturday, Dan trained me down to the farmers market, and back home. Everyone needs a good coach. No joke, my balance is still a bit off from all the brain surgeries, but I'm confident. Dan even made a little video, sneaker that he is, and I can't stop laughing about it. My goal to finish the Olympic Triathlon is to complete in under 3.5 hours. I'm being modest though, I really think I'm going to easily make the three hour mark. (I hope you can literally hear me laughing as I wrote that.) Set the goals high right!? To the moon!

I may not be living the way I thought I would, but good God, I'm having some freaking fun every single day. And I realize that life is more than just having fun, but sometimes it's really exactly what you need.

If you'll be in the Chelan area the race is July 18th, a Saturday. I assume it will be a zoo, but if you're around you'll know me by my uncontrollable dinging, and ahead of its' time aerodynamic helmet. (Sarcasm.)

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 just push through, when tired. That is what I somehow can't seem to imprint on my mind. My body is not my own, my brain is not my own. I can not overwork it. I can not push though. That's a tough lesson for a girl who has two speeds, "go" and "go faster (preferably with coffee)".

Anyway, I just had to give you guys that update since I've been MIA for several weeks. The good part? I joined a morning walking group, which completely feeds my soul. I've also joined a Wednesday track running group (although in a couple of weeks we will switch to trails), which keeps me laughing, and sweating, and alive. I had missed all of the human interaction. I'm a social being that needs face to face smiles, and hugs, and high fives, and slaps on the back. As you know, if I'm having seizures, I get stuck, isolated at home. By cutting back, I'm able to LIVE.

I can either be tethered to a computer, trying to solve the world's problems, and quickly disintegrate, or I can make myself some guidelines to limit my emotional exposure. I wish I wasn't so sensitive, that I didn't worry about people so much, but no matter how much I try, I can't stop it. When I talk to these brain tumor patients, trying to help them navigate, I end up not sleeping at night. I am a sponge that absorbs the fear, and anxiety. I don't know how to fix it, and I don't want to stop, and I don't know how to find a balance between the two. On goes the riddle of my life.

Please don't be afraid to contact me with your brain tumor questions. I hate even sharing that it stresses me out because I know people need the help, the information, but I have to be honest at the same time. That's been the whole point of the blog is to have place for me to vent, and explore, and be a resource for others. I'll figure out a way to help and not run myself into the ground, I promise.

A triumph this afternoon, my first cherry tomato of the season has joined the world!

With love.

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 on groceries is the best investment in your health, and your soul. 

This is part of who I am, and what I believe. I believe we're all connected, that the spinach in your smoothie when cut fresh has exponentially more antioxidants than the old stuff in the cooler section at Costco, that's wilted and already rotting. That we're being fleeced into thinking that cheaper products are equal in value. But what is the value of your health?

You don't have to think like me, or agree with what I am saying, but this is what I am recognizing as I evolve. That toxins sprayed on crops ARE a big deal. That we are damaging our water sources, and polluting our bodies, and it's such a shame. We are sold into this belief that we should work hard, climb the corporate ladder, cut costs and find the cheapest products, never miss work, go go go, and we're missing the bigger picture. That life is short. Our Earth is not impervious, or infinite. The toxins we spray on our soil lasts for eons. This is no small problem. In 1970 1 in 30 would be diagnosed with cancer in their lifetime. Now it's 1 in 3. We are allowing big corporations to conduct science experiments, and we're the rats. And the government is not protecting us. 

If you die tomorrow will you have been the person you wanted to be? Did you accomplish what really mattered? Do you have children? If the above statistics scare you, consider what it will be in 40 years. Will it be a situation where your children will not only be diagnosed with cancer in their lifetime, but even worse battle three different types? It's a real concern. And it should terrify you. Our culture, and our values are askew, and if we don't stop and assess the true crisis, and make adjustments, the issues will just continue to accelerate. 

What can you do? Take a moment and listen to your soul, your inner voice, about what you value, and what you want to accomplish. Then remember that you don't have to take these issues on as life missions, or spend a lot of time trying to move mountains. You can simply speak with your pocketbook. Support causes you believe in. Pay the extra couple of bucks for better food. If that means you don't get the next pair of jeans, who cares. Pick you. Pick your family. As you walk to the register, or to the sweet woman at the farmer's market, with your organic produce, and grassfed chicken breast, you can smile and know that you're protecting yourself the best way you can. 

Maybe I'm lofty, and perhaps even annoying about this, but life is so beautiful, and what you put in, and what you value, gives back tenfold, be it negative or positive.

A brilliant book to get your wheels turning...

TMZ Hypermutation in LGG (Low Grade Glioma)

I’ve been meaning to write about this issue for several months, and apologize for the delay in sharing. I was overwhelmed by the magnitude of the report, and didn’t know how to broach it. This is by far one of the most important research studies I've ever read regarding low grade glioma. Finally, some legitimate information which should help patients decide on treatments. I have sent the papers to my tumor friends that I know are considering, or on TMZ, of the hypermutation issue, and now I know that a post has to be written for those out there on the interwebs looking for direction on whether or not to take temozolomide (TMZ) for a low grade glioma. I’m going to embed the research study, along with the supplement, and although I realize not many are interested in reading the entire report (which is actually only three pages of reading), I’m providing a few teasers so that you can either get the gist of it, or it may even entice you into reading the whole thing. Just as an aside, if I know you already took TMZ for your low grade glioma, I did not send the documents to you. I went back and forth on whether I should say something, or not, and I decided it would only be harmful, and scary. If you've already taken it, there's nothing you can do. And ultimately, most likely, if you are a hypermutator, you would have found out with a recurrence during or around treatment. 

Mutational Analysis Reveals the Origin and Therapy-Driven Evolution of Recurrent Glioma 

(TMZ Hypermutation of grade 2 glioma induced into GBM)

“Beyond maximal, safe, surgical resection, there is currently no standard of care for patients with low-grade glioma, and options include surveillance, adjuvant radiation alone, TMZ alone, or radiation and TMZ.”

"While the initial tumors and most of the recurrent tumors in our cohort had 0.2-4.5 mutations per megabase (Mb) (21, 22), six of the ten patients treated with TMZ had recurrent tumors that were hypermutated; that is, they harbored 31.9-90.9 mutations per Mb (table S6).”

"The introduction of thousands of de novo mutations may drive the evolution of TMZ-resistant glioma cells to higher states of malignant potential (1, 23). Indeed, all six recurrent tumors that showed evidence of TMZ-induced hypermutation underwent malignant progression to GBM, a high-grade tumor with a worse prognosis (8, 9).”

"We also demonstrated an alternative evolutionary path of low-grade glioma that is largely determined by adjuvant chemotherapy with TMZ.”

“Mutation rates in each tumor pair suggested that >98.7% are due to TMZ-induced mutagenesis (10).”

"There is currently no information on whether treatment of grade II astrocytomas with TMZ confers longer overall survival (8)."

"Future basic and clinical studies must weigh the initial antitumor effects of TMZ against the potential risk of inducing new driver mutations and malignant progression.”

What I see, that is lacking in our medical system, is a complete disconnect between current research and general practice. I’d like to think that doctors want us to survive, that they prescribe treatments to prolong our lives, but the fact remains that the current system is antiquated, and dangerous. It’s dangerous because there is tons of research being done, but doctors are not aware of the changes, and new developments. When a study like this comes out, every nerco-oncologist in the world should be aware, and changes in treatment recommendations should be adjusted accordingly. People are dying because of this lack of knowledge. It’s unacceptable. 

We are not receiving “best practice” we are receiving “marginal, outdated practice”. I recognize that doctors are busy, that they have massive workloads, and we can’t expect them to be up on all the latest research (or can we) but this is our lives, we need the most cutting edge information. It is my opinion that before neuro-oncologists prescribe TMZ alone (or even in combination with radiation) low grade patients should be apprised of the serious risks of taking TMZ. That using it alone (on low grade glioma specifically) has shown a 60% chance of causing a recurrence that will present as a GBM. That is a horrendous risk. It’s well known that brain tumors recur and recur and recur until it progresses to the point where it kills you, but usually with low grades (left untreated by TMZ or radiation) it most often recurs as the same low grade. At least for the first few tumor recurrences. Living a life with a glioma is a chess game. It’s always a guessing game about when to treat and what treatment to use. You don’t want to “poke the beast” with the wrong treatments, yet you often aren’t comfortable with the standard wait and watch protocol. 

It is imperative that patients know the dangers of TMZ with low grade glioma so that they can make educated decisions. That’s why I’m writing this blog post. I hope it helps spread the word that treatment with TMZ for low grade glioma has inherent danger.

Want to know what my buddy Stephen from Astrocytoma Options says? 

"As the hypermutation phenotype has been seen in some grade II astrocytomas and also in glioblastoma (14) following TMZ therapy, by extrapolation it is likely that it also occurs in grade III astrocytoma patients. The frequency of this occurrence will not be known until larger studies are completed. This new knowledge should have immediate impacts on chemotherapeutic strategies, especially for lower grade glioma." 

One of the many things I appreciate about Astrocytoma Options is that Stephen has a way of digesting information and using it to our advantage. What I'm saying in this blog post, is not that we should throw out TMZ, but that we need to better understand it's benefits and downfalls. It may still be a benefit in a cocktail approach, but needs to chosen with care. 

"If a decision is made to proceed with TMZ chemotherapy for lower grade (II and III) glioma patients in the adjuvant setting (post-radiation) or in the absence of radiation, one strategy to reduce the risk of TMZ-induced hypermutation could be to apply a combination strategy, involving a simultaneous or alternating application of other cytotoxic drugs, which reduce the evolutionary selective pressure exerted by TMZ alone."

I hope this information lives on in the interwebs, the information must get out, and it seems as if we have to change the way we are treated, literally, by informing our oncologists.

Does Altruism Exist?

I'm sitting at the JFK waiting to fly back home and wondering to myself how I got so fortunate in life. I just spent the night (as I usually do) with my friends Nate and Miraim, and baby Sol of course, and just being around them is calming, and fun, we talk about everything. It's engaging and energizing, and refreshing, and fills me with joy. Flash to today where Sol, Miriam and I met up with our friend John (Steph was stuck at work) for lunch and again it's the most invigorating, expressive, comprehensive friendship. How did I get so lucky to live this life and be surrounded by such amazing humans? These beautiful souls who think deeply, whose hearts are profoundly touched by human suffering or the human cause. I think they all see themselves as just normal people, but I see them as the glue that keeps humanity real, and kind. I hear their words, as they talk on any subject, and they care. They have such huge hearts, it's the most lovely thing.

The shot went well, fabulously well, Dr Germany said something along the lines of, "We're on a winning team" in reference to my protocol. Man that's a fantastic thing to hear. I don't know why I get to live this - I don't even have a good word for it - blessed life, but I am grateful for every second. And along with living a life that is true to me, and my evolving views, I will also continue my mission to help other tumor patients achieve health, and longevity.

The bandaid peaking out reminds me of today's life giving treatment

The thought has crossed my mind that now I'm stable, I could say screw it and just go live my life (while obviously continuing my treatments). I could stop blogging. I could unconnect from social media and just garden, or find a career that could withstand my seizures, and time off to travel for treatments. I could turn my back on the brain tumor world and focus on anything, or everything, else. I could just spend my time in an unrelated field, or focus on other endeavors, but the truth is that I feel the need to pay it forward. I am driven, compelled, to help others who are just starting their journey, or perhaps are dealing with a relapse/recurrence. I could not turn my back on family, and that's who you all are. You are my brain tumor family, and I will not abandon you. It would be easier, probably, and less emotional, less stressful, but who would I be if I didn't help those in need? It's not the kind of person I want to be. We all have choices every moment of every day about who we are and how we're going to live our lives. I have somehow navigated my way through this crazy diagnosis, and although I'm not guaranteed tumor stability for life, with this path that I'm on, it's working for now and I know I can help others. I've done it and will happily continue. It's actually even selfish sometimes because it makes me feel good when I talk to another brain tumor diagnosees and help them figure out their own plan, because everyone is different. Each brain tumor patient can blaze their own path; they can take little bits here, and little bits there, from other patients who have been successful. When I see, or hear in their voice, the determination to live, it fuels me. When I share what I know, or connect them with others who can also give valuable information, I feel intrinsically good. Is there such a thing as altruism? I really don't know.

So, even though I worry about you guys, all my tumor friends, crying for you at times, I wouldn't change a thing about the responsibility to help. I know this is a choice. I see pieces of myself in you, I know your struggles, I know your fears. Know that I'm here, and I will help you in any way I can.

UCLA Results

I'm in a car in Queens, NYC (I'm in town for another NDV immunotherapy shot) and just got off the phone with UCLA. They agree with UW! I am considered "stable without recurrence, with an almost exact MRI scan compared to October 2014", my next MRI will be in 6 months. Of course, knowing me, I was concerned with the words "almost exact" - I wanted exact or smaller - but then I told myself to just chill out, and breathe. Things are good. Things are great. I've had the phone call in the past telling me it things didn't look good, so what am I doing overanalyzing stuff!? Sometimes I wish I was a little more "chill" in general, but then I wonder if I would have gotten the same results if I didn't panic and turn into cancer warrior mode. I look for all the hidden meanings and nuances, always wanting to stay ahead of the game. But I think I can truly be happy with these results, and focus on helping my other brain tumor friends, and continue my protocol at the same time.

Woooeeeeee! Let's keep this roll buttered!

My view as the results came in

Polar Bearing for FD

Alright, sorry for the delay. We've been inundated with friends all weekend. Yay! So we've been enjoying the company, and now it's time for the results of the fundraiser. Drum roll please.........we did it!!! We climbed 51 climbs, I believe. I knew we wouldn't be able to remember all of the climbs so we took a photo of each route we completed (many we climbed a few times). I'm uploading the photos to prove it, although we did sneak in some kid's climbs, but hey, they were still 10-12 foot climbs, and of course we had to do climbs in the bouldering area (okay okay, we did mostly bouldering to get the quota). Those count, right?

We had so much fun climbing; you can't beat that crew! And in honor of all those magical donations which I consider the equivalent to a bunch of carebear stares to hearts you've never met, nor likely will, Dan and I ran into the drink today to say thank you.

And the video to prove it:

It's far away, and you probably can't easily tell, but I pulled off a shallow dive and we both went under the water for a full dunk. We also spooked three huge rock crab. One of them was missing a pincher, poor guy.

Here's a photo with our photographer, Burke. After filming, he set down the camera and ran in too! So look at that, you inspired a whole new person to get "OUT LIVING IT".

Thank you again for the AMAZING success of this fundraiser. You all completely blew us away with the continued generosity, and support. Please know that the money that you donated is truly going to have an impact on young adult cancer people. It was a turning point for me, a huge eye opener, and one of the best weeks of my whole life. When you get diagnosed then get thrown into the medical system, it's overwhelming and your whole life changes. It's terrifying, and sad, and you have amazing friends that come together to help you, but there are others who pull away, or whom you must pull away from to avoid toxic relationships. All of a sudden your whole life is survival. Your body changes as they cut, (and burn and poison) you're told you don't have long to live. The whole process is overwhelming, shocking, dumbfounding, impossible to relate. So when an organization forms to help us young adult humpty dumpties put ourselves together, it is not only generous and kind, it's profoundly needed. Young adult cancer patients have the worst survival rates. It's scary in here, in this group, and we need support to continue to mend, and flourish. So thank you for helping do that, and thank you in joining us in paying it forward. You have all touched my heart so deeply.

Fundraising Climb

We have less than three hours before our climb. This is insane, 50 climbs in three hours between two people?! Wish us luck. We're going to need it.

Thank you for all of the generous donations!! You guys seriously brought it! We are so grateful, and excited to be able to send at least three people to camp!! That is amazing, and so fun. Thank you for helping us pay it forward. We, as a group, just did something that will put smiles on faces, and create memories for three people dealing with cancer. It's a really wonderful thing and it wouldn't have happened without your generous donations. Thank you, thank you, thank you!!

I'll do another post tonight after the climb and let you know if we made our goal, and share some photos.

Thanks again you guys, this really made me feel special. It's obviously a cause that my heart deeply connects with. Love you all. :)

Polar Bear Plunge

Good morning everyone. I posted yesterday about the fundraiser that Dan and I are doing to support  new cancer patients into First Descents cancer adventure camps. What I forgot to mention is that a donation as little as $5 is greatly appreciated. Every single dollar counts. Dan and I are going to climb 50 - count them fifty, five zero - routes in three hours. It is going to be challenging, but it's going to be amazing! I will be taking photos, maybe even video, and posting it to the fundraising page.

And if we don't meet our goal of fifty climbs in three hours next Saturday, we have pledged to do a polar bear plunge. 

Brrrrrr! You can give us suggestions, perhaps I can put a poll on the blog and you can vote on where we leap into the frigid waters.

I am so excited for this challenge, and I really hope we escape the icy Puget Sound. Most of all, I really want to give others a chance to gain lifelong friends, comrades, a true loving understanding peer group that understands them. It's just like new moms tend to reach out to other new moms, we do better, learn more, have better support when we band together. It just makes things better all around. We're here on Earth to help each other, and it's a lot of fun. Let's fundraise to envelope more cancer patients under the FD wing. Let's spread the joy, and the love. Navigating and enduring cancer is one of the hardest trials a person can endure. Let's make it easier for them.

Thank you for reading this, and thank you for the support. I wish you could see the laughter, and the healing tears, the hugs, and the accomplishment that occurs throughout these amazing adventure.

DONATE

Please, please, please be so kind as to help spread the word about our page. It would mean so much to both Dan and I.

Thank you again,

Jess

Climb-A-Thon FD Fundraiser

Dan and I found a way to fundraise for other cancer patients to join First Descents on an adventure camp retreat - by fundraising we make the camp free to the cancer patients! Here is my story from the fundraising page. I'm so excited at the idea of more cancer patients getting to enjoy the experience that is FD. It may be crazy but we're hoping to raise $3,000. In 10 days. Yep, we're crazy. PS All donations are tax deductible! (click to donate)

Hi Guys, 

Welcome to our First Descents Climbathon fundraising page! Very soon, on April 18th, Dan and I will rock climb to raise money so that more cancer patients/survivors can enjoy the life changing experience of a First Descents camp. We signed up a little late, so we only have about 10 days to raise money before we climb our hearts out. Our goal, in the three hour time slot, is to do 50 climbs between the two of us. Is that insane? Yes it is. But, if we divide it by two, that's 25 climbs apiece, then divide it into three hours and it's less than 10 climbs per hour per person. Is it possible? I don't know! But good gopher we're going to give it our all. 

My lovely blog readers, friends, and family, have heard me sing the praises of what a First Descents adventure camp did for my morale, my confidence, my soul, my spirit. It was epic. I also gained profound friendships, soul siblings. They're family. Please help us support First Descents and its mission to provide amazing outdoor adventure programs for young adults impacted by cancer. Please consider making a donation. I can't emphasize enough how excited I am to be raising money so that others can enjoy what I've already been able to experience.

As many of you know I was diagnosed with a brain tumor on April 13th, 2010 at the age of 29. I had my first brain surgery on the 27th of that same month. It was an awake crainiotomy. They literally put me under, sawed open my skull, woke me back up and dug around in my brain with electrodes, and tools, to determine what was tumor tissue, and what was healthy brain tissue. During the process I was joking with the doctors and answering their questions - it was wild! They awake craniotomies in cases where the tumors grow dangerously within important areas of the functiong brain. For me that area was speech, language, and movement. I was at risk of being paralyzed on my right side, of being unable to process or use language.

Not long after the eight hour brain surgery, my body created a blood clot in my brain along with hemorrhaging in the tumor cavity. It required a second, emergent brain surgery. When I came out of the second brain surgery, I was paralyzed on my right side. I couldn't say more than a one syllable word. I didn't know the months of the year, or the days of the week for that matter. I couldn't recognize everyday items. I couldn't walk. I couldn't feed myself, or even wipe my own bum. The doctors and nurses said I would not get better. And they were almost right. It took shy of a full year to learn how to read  again, and run the way that I used to, the way I loved. I still get better every single day. 

I have since had a second brain tumor grow, and it was resected. I have been doing active treatment ever since (two and a half years). My treatment protocol is intense and dedicated. I've flown to other countries for immunotherapies, I swollow hundreds of pills a day. One of my main treatments must be refrigerated, and it requires applications of medicine every four hours. (This is how I have to insert the medicine up my nose every four hours.)

When I went to my First Descents camp I was nervous because of my treatments. I thought  I wouldn't be able to enjoy all of the activities. But the First Descents crew, especially "Honeybucket", made sure that I had my medicine, going as far as strapping the cooler of my treatments to her back as we climbed. (My medicine is in a cooler in that gigantic backpack.)

For the first time since my diagnosis I wasn't the weirdo doing treatments, or the girl who had to stay home because of seizures. I was free. I was supported. I was normal in a sea of my peers. Just writing those words, remembering the freedom, has caused me to start crying happy tears. This is what I want to share with others. I want to pay it forward so that no other cancer patient ever feels alone, or weird, or isolated. We are not meant to be alone, solitary. It puts a damp cloth on the fire of our soul.

There is no pressure here, but if you can't make a donation at this point, please help me reach my goal by sharing this page on Facebook and Twitter. Or, even better, send an e-mail to friends you think might be interested in contributing and include a link to my page!

Thank you for loving me, for supporting me, and for helping me pay it forward.

With love,

"Coconuts" (and "Huckleberry" too!)

Want to donate? CLICK HERE

Another Seizure

Still waiting for the UCLA MRI results. Haven't been posting much, but wanted to make sure you all know I'm fine. Had another seizure yesterday. A legitimate one, not just an aura. I had forgotten how bad seizures hurt. And today, the day after the seizure, my head feels like it's exploding. Especially if I lower my head down toward my heart (is that normal?). Freaking seizures. I'm exhausted and can't retain much since wires are all fried. It's a nap day. 

Dan took this after I fell asleep. He had rushed home to help me.

It's good that Dan could come home and help me. He found the house in a mess, water everywhere (counter and floor) - I had tried to get ice water to cool me down and stop the seizure's progression. He found my packet of lorazepam (my seizure pills) on the ground crumbled by my fist as I couldn't get the pills out. I was half in and out of my clothes because I was overheating, then freezing, but couldn't get dressed again since my entire right side was paralyzed. My lips were blue and my skin purplish, from chill. It all always happens so fast. I imagine it's similar to a stroke. (Although, perhaps a little less damaging.)

My right side was paralyzed, then numb, the entire rest of the night. It's starting to get better, but shockingly this seizure has had very long-lasting side effects. It's one of the most intense seizure situations yet, without losing conciousness. 

Hope you all are well. I'm off to rest some more. Just thinking hurts. 

MRI 3/22/15 Results

The MRI results are in: "Findings: 
Compared to multiple previous examinations, contrast enhancement at the site of previous left parietal craniotomy and tumor resection is unchanged. The extent of flair signal abnormality is also unchanged compared to July 20, 2013."

                     

Woo HOO!!!! 

Still have to wait for final UCLA results in a few weeks, but with UW's results like this, I'm going to remain optimistic. Time to dance!!!

And now I can focus more on others, not me! Ha! YES!!! My ultimate goal is manifesting. I like this.