A Daughter's Love

There are so many beautiful souls that have been effected by brain cancer, and one of them, Karin, is a very special woman who loves her father so deeply that she created a fundraiser to raise awareness and money for brain cancer research in honor of her father's glioblastoma diagnosis. This woman makes things happen. She is individually an inspiration, let alone what you're about to watch and read. I meet so many people, many online, who reach out for information, or answers to various questions, and I'm happy to help. This time I was invited to participate in lending my voice (I'm in the gobs of clips at the end of the video), and excitement, and use my ability to spread news. I was honored to be contacted, thrilled to lend a hand. Instead of me trying to reiterate Karin's message, I have posted her most recent correspondence below so that you can understand the big picture. I realize as I write this that I've been posting quite a bit about things that are asking for money, be it other patients, etc., but we all have different things that touch our hearts and I figure that even if just one person signs up for the concert or donates a few dollars, it will still be a success. In fact, if no one donates, you are reading this right now and we're spreading more information about brain cancer. It's an ongoing battle, to get the word out, to get funding, to get access to research, for people to understand how little there is to help us survive. So just the fact that you are reading this post in this moment is a wonderful gift that you're giving me, and us as a whole. So thank you.

Hi there Jessica!  I am not sure if you have had a chance to take a peek at the film since completion? ....   Thanks again for participating.  I think that the film came out beautifully, and I have received incredibly positive feed-back.  Please feel free to forward this email or share the information in it in any way you see fit to anyone 

who you think would be interested!  Thanks!!  Any help that you can provide in spreading the word to anyone who would be interested in raising money for brain cancer research by watching some fantastic entertainment, LIVE STREAMED on Concert Window would be fabulous.  And so appreciated.  Happy, Happy New Year!

--Karin

Hi there,

When my Dad was diagnosed with Glioblaastoma last Spring, I immediately learned all that I could about the disease.  Just as quickly, I learned that because it accounts for such a small percentage of cancer death per year (just 2%), research efforts on its behalf receive almost no public funding.  There are over 120 different types of brain cancer which makes effective treatment incredibly complicated.  And to be effective, treatment must pass through the brain's "blood brain barrier" which has proven fantastically difficult.  Scientists are understanding more about the disease via research, but research requires funding.

I decided to do what I could to help raise both money and awareness for brain cancer.  Music is my passion, a passion that was inspired by, and is shared with my Dad.  I decided to produce a Benefit Concert.  

I sold raffle tickets this past summer to offset production costs of the effort.  I met the goal, and raised $10,000 which means that 100% of the money earned from the live event will go directly to the non-profit: "Accelerate Brain Cancer Cure" to help fund brain cancer research.  

“Our job is very straight-forward.  

It is to help move forward new treatments that can extend the lives, 

and improve the quality of lives, of people facing brain cancer.  

My definition of success would be to put ourselves out of business 

as soon as we could possibly do it.”

--Max Wallace, President and CEO of Accelerate Brain Cancer Cure

As of December 31st, all 553 seats of The Bellows Falls Opera House in Bellows Falls, Vermont have been sold.  The concert is SOLD OUT!

The concert will be filmed and streamed live via "Concert Window."  Anyone, anywhere in the world can log into "Concert Window" to make a "pay what you want" donation and then watch the Benefit Concert (on any computer) as it is streamed live from the Opera House.  A large percentage of the funds raised via the live-stream will additionally be donated to Accelerate Brain Cancer Cure.

Although inspired my my Dad's diagnosis, this Benefit Concert has grown so much bigger.  With the generous help and participation of many friends, support has swelled in my community on behalf of local, Mark Green, also fighting the disease.   When Mark was diagnosed with brain cancer he began working for Accelerate Brain Cancer Cure.  This is why all money raised will be donated to this particular organization.  In addition to providing much needed money to support brain cancer research, Accelerate Brain Cancer Cure is also an invaluable source of support, information, and referrals for anyone diagnosed with brain cancer.  

Many involved in the Benefit Concert have been inspired to participate because someone they love has, or has had brain cancer.  What began as a personal effort has grown to become a community effort.  I would love to see it evolve to become a global effort .... with participation from anyone around the world who has been affected by brain cancer.  

Once you make your donation to watch the Benefit Concert on "Concert Window" you will have the opportunity to write something in the "chat" section .... I invite you to include the name of the person who has motivated you to participate.  In that way, we will have record of  .... and send loving energy to  ... the many, many people who are effected by brain cancer.

Here are two links.  Feel free to forward this email to anyone who you think would be interested in watching the live-stream and supporting the effort:

• A Benefit Concert for Accelerate Brain Cancer Cure at The Bellows Falls Opera House on Saturday, March 28th featuring The Steel Wheels. 
• The concert will be filmed and streamed live via "Concert Window" 

The first is a link to the film that I created.  Ken Burns provides the introduction.  Carly Simon, Miri Ben-Ari, Rhonda Vincent, Mirella Cesa, The Black Lillies, Red Molly, Dr. Henry Friedman, Cure Brain Cancer Foundation (from Australia), Jessica Oldwyn, Dana Swanson, the late David Menasche (author of "The Priority List"), Tom Bodet and many others participate in the film.  The purpose of the film is to provide information about brain cancer, as well as instructions on how to watch the concert as it is streamed live on "Concert Window."

https://www.youtube.com/watch?v=DKsJziLW8t4

The second link is a direct link to the "Concert Window" listing for the Benefit Concert.  Click on it TODAY and go directly to the listing for the benefit concert.  Here you can make a donation (of any amount), in effect securing a "ticket" to watch the concert as it is streamed live at 7:30 on Saturday,  March 28th.  Once you make your donation, "Concert Window" will automatically email you a reminder to tune in and watch the concert!

https://www.concertwindow.com/shows/7900-the-steel-wheels-with-todd-roach-mac-ritchey-and-be

Feel free to share this email with anyone who:

1)  LOVES fantastic music.  Opening will be Todd Roach (Frame Drum) and Mac Ritchey (Oud) and Beth Lavinder (Hoop Dancer.)  And the main act, The Steel Wheels, are gospel- and bluegrass-influenced "Americana" music at its best!

"Music Lovers, prepare to have your breath taken away and goose bumps to cover your arms more at this one concert than any you have EVER been to.  The Steel Wheels are just that good."

--Rear Listening Room, Gando, TX

2)  Wants to help raise money for brain cancer research!

If you are inclined to watch the concert as it is streamed on "Concert Window," please make your donation today.  Thanks!

--Karin Mallory

FYI, these are some of the people in the film:

In addition to Ken Burns (PBS) and NPR's Tom Bodett and the many musicians who graciously contributed to the film (Carly Simon, Rhonda Vincent, The Black Lillies, Red Molly and Mirella Cesa) Many are people intimately connected to brain cancer. The inspiration was certainly my Dads diagnosis. It became a community one in support of local friend Mark Green. But it really is on behalf of anyone who ever has been, or will be afflicted with brain cancer.

Opening percussionist, Todd Roach's father-in-law died from brain cancer. Beth Lavinder is the hoop dancer who will be performing with Todd. I saw her this past summer at the Roots on the River festival in Bellows Falls. She hoop danced on stage while James McMurtry and his band performed. I was mesmerized and asked her if she would like to come back (from her home in North Carolina) to perform with Todd and Mac during the Benefit Concert. She was thrilled to do so. March 28th is the anniversary of her dear friend who died .... from brain cancer. I had no idea.

Within the film, there are many who have participated in honor of loved ones who have, or have died from brain cancer or are otherwise connected to brain cancer.

1) Internationally-recognized neuro-oncologist from The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center, Dr. Henry Friedman.

2) Australia's leading brain cancer advocates: Cure Brain Cancer Foundation.

3) Jessica Oldwyn, Brain Cancer Blogger and researcher extradornairre. Her blog, "Toom-ah?, What Stinkin' Toom-ah!" both chronicles her life since being diagnosed with brain cancer AND provides an astounding amount of information about brain cancer.

4) Dana Swanson. Dana has brain cancer. She is also a singer, actor, writer, comedian and the voice of SARA v3.0 for "Tooanmi."

5) David Menasche, author of "The Priority List: A Teacher's Final Quest to discover Life's Greatest Lessons" which chronicles his life with Brain Cancer. He was a teacher until a seizure from brain cancer took his vision. The movie version starring Steve Carell will come out shortly. David provided 4 "takes" for his clip before settling on this one which is of him holding up his book, "The Priority List" Unfortunately David never saw this completed film as he died a couple of months ago.

6) Tommy Harvey, the boy being held up by the elephant's trunk is from Mendon, MA. His younger brother passed away two years ago from brain cancer. The elephant's name is "Tai" ... he is perhaps the most famous "movie star" in the film as he has appeared in "The Jungle Book," "Operation Dumbo Drop," and "Water for Elephants" as well as Britney Spears' Music Video, "Circus". Tai spent this past summer at The Southwick Zoo (owned by Tommy's brother's elementary school teacher's husband.) 

7) The big group of students from The Dummerston School in Dummerston, VT participate in honor of a teacher from that school who died from brain cancer.

8) Neil Taylor, "The Blind Masseur" who lives and practices massage in Brattleboro, VT. Like David Menasche, Neil was a teacher who loved his work (at The Greenwood School in Putney, VT) before a seizure (caused by brain cancer) took his sight. He had to re-invent his life and now practices massage. We trade. His positive outlook on life is contagious!

9) Mark Green who decided to work for Accelerate Brain Cancer Cure after he was diagnosed with the disease. Mark's daughters are also in the film.

10) Miri Ben-Ari is a badass hip-hop violinist. 

11) Others in the film have loved ones who currently have, or have died from brain cancer.

For a disease that effects such a small percentage, I sure bumped into an awful lot of it. Please watch the film and then GO TO CONCERT WINDOW TODAY to make a donation to watch the benefit concert streamed live on March 28th. Concert Window will email you on the day of the show, reminding you to tune in. 

Thank you.

Supressed Dreams

It wasn't a conscious decision, but I'm noticing that I've been posting less and less about my personal life, and more about other stuff. After almost five years of blogging my brain tumor journey, I'm realizing that emoting is exhausting. Truthfully, looking back, I never really thought I would even be alive this long. I believed what the doctors told me, that I'd be lucky to have 4.5 years. It's not that I thought I would die, it's more that I couldn't conceptualize long term living. I couldn't even imagine what life would look like, and I felt that dreaming of something that may never come was unhealthy. So, instead of dreaming of the future, I've been living in the moment, focusing on each day, and day by day it has turned into years, and years. It's thrilling, and confusing, because if I'm going to actually live, actually survive, then what is my life going to look like? And that's what I've been going through over the past few months. I've been absorbing the reality that I may live. That I may be able to grow old, and enjoy all of the things that come with that.

That's the weird thing with this kind of diagnosis, is that they say the tumors always grow back. That we're never safe. But I know many stories of people that survive long term. They're not the norm, and none of them are unscathed by their brain tumor diagnosis and treatments, but they're alive nonetheless.

I guess I'm adjusting to the concept of living long term, what that would look like. Whether or not I should entertain making some goals. When I was diagnosed I was 29. Now, this year I'm turning 35. I have been trying to survive for so long, and with my MRIs pushed out to every six months, I'm getting a glimpse of what real life could be. So now, it's time to start contemplating the dreams I have suppressed, that I've shoved so deep down in my soul that I don't even know what they are.

In the meantime I'd like to share a photo of my friend Jess. In December I was able to join her for her graduation from Johns Hopkins School of Nursing. I am so proud of her, and excited for her new journey. I like to think that I was her first true patient. :)

Farts Can Cure Cancer? What?

Have you guys been hearing about the new reports that fart smells can fight cancer, and heart disease, and diabetes (among other things)? It's crazy! And gross. But absolutely hilarious! I'm not sure how it works, or if smelling farts is actually good for you like they're reporting, but this article is where all of the madness is derived from. Apparently, hydrogen sulfide (the rotten egg smell), in small doses, can actually restore the mitochonria's function. The mitochondria is essentially the digestive system of the cells in our bodies, they often refer to it as the powerhouse of our bodies. As you may recall Dr Thomas Seyfried who does all that research on the ketogenic diet and cancer, believes cancer is an issue with the mitochondria, "The mitochondria—the main power generators in your cells—are believed to be the central point in the origins of many cancers. Your mitochondria can be damaged not only by inherited mutations, but also by a wide variety of environmental factors and toxins". So, maybe instead of the ketogenic diet, perhaps we just need to smell toots. Haha! Gross!! Maybe the ketogenic diet isn't sounding so bad right now.


I hope you know I'm saying all of this tongue and cheek. I don't think you should sniff smelly toots to cure yourself, but what do I know, the research is just coming out. 

Sunday Dennis Medical Fund

I have never met a Canadian that I didn't like. In fact, all of the Canadians that I know are absolutely superb. I adore them. With that being said (even though, essentially, it's irrelevant), a close friend of my buddy Stephen (Astrocytoma Options) just forwarded me an email. It's a letter from a desperate husband to save his wife, the mother of their three young children, from a newly diagnosed aggressive brain tumor. I realize that many of my readers are fighting their own cancer battles, or they are family members who are the support system, but if you are so inclined, and capable of donating, the information is below (I will copy and paste the letter). There are so many who are fighting their own battles, so of course, there is no pressure here. I just want to spread the word and help out in any way that I can. You guys know how much I advocate going for the best medical care - even if you have to travel. That by driving the demand we support cutting edge treatments that will become more accessible for everyone, and that's a very powerful thing. To support pioneers in treatment is a win for all brain tumor fighters, current and future. So whether you can donate, or just help out by sharing their story (I think there's a way at the bottom of this post to share on other media sites), I appreciate the help very, very much. At the end of the letter is a video of Sunday, the wife and mother. She's a singer/songwriter. Let's keep her singing!

We need to get to UCLA

I can hardly believe that I am writing this letter, but I am. It the hardest letter I've ever had to write in my life.  On Wed. Dec 31st, Sunday was diagnosed with a brain tumor.  On Thurs. they sent us to Victoria General Hospital where we met with Neurosurgeon, Dr. Evan Frangou, to talk about removing the tumor.  On Fri., they ran a few more tests, did an MRI and again we met with Dr. Frangou.  He let us know that without a tissue sample there was no definitive answers as to what kind of tumor it is, but based on test results there is a high probability that she has a high grade Gleoma, a fast growing, aggressive form of brain cancer otherwise known as Gleoblastoma.  There are very limited resources in Canada for treating such tumors.  It can be removed, hit with radiation and high levels of chemo, but this is not a cure.  So it's just a matter of time before more tumors grow.

Upon learning about her diagnoses, Sunday contacted our friend Stephen Western, a patient advocate, and an incredible researcher of brain tumors and the advancements of curing these types of cancers.  He has an incredible website http://astrocytomaoptions.com/ with lots of information on these types of tumors and treatments that are being studied.  (Please take a look at his sight and make a donation to help further his research.)  He informed us about a clinical study being done at UCLA under the direction of world renowned neurosurgeon Dr. Linda Liau, M.D., Ph.D., Professor and Vice Chair of Neurosurgery, and Director of UCLA Brain Tumor Program.  This clinical study is on Dendritic Cell Vaccine.  In other words, taking some of Sundays blood and training her DC cells to destroy tumor cells and re-injecting her with that blood whereby eliminating all Glioblastoma cells. This study is being done at the UCLA Department of Neurosurgery and David Geffen School of Medicine at UCLA.  Using this technology, they have been finding incredible results killing all Glioblastoma cells having no tumors return.

To qualify for this study the protocol requires us to have the tumor removed by Dr. Liau at the UCLA Medical Center.  We have to pay for this part ourselves, then every other cost is covered by the clinical study.

This is why I am writing the letter.  I am asking for everyone and anyones help to get us to UCLA.  We need to raise funds to help pay for the cost of surgery, anesthesiologist, pre and post op care and hospital fees.  Right now our goal is to raise $300,000 by the end of this weekend.  Everything is happening so quickly so I am waiting to get a estimate from Dr. Liau but I believe this will help cover most cost if not all of a procedure of this magnitude.  Because of the kind of tumor, the size and the location, we don't have time to waste, we have to act quickly.  If we can have the funds together by Monday, January 5th, we can get ourselves enrolled and down to UCLA by the end of this next week.  If you have money or anyone that you know has money I am asking for substantial donations to be made for Sundays care.  This is my wife's life and the momma or our 3 children, so I am not afraid to ask.  Please help us in any way that you can.

Know that any contributions made will help save Sundays life and contribute to saving hundreds more, as it will help in the advancement of this kind of ground breaking technology, Dendritic Cell Vaccine, Immunotherapy.

All Canadian funds can be sent to https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=JP4A94YKEV75C

All US funds can be sent to https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=FMPMQW2DX3R5E

Thanks you in advance so so much.

In love and light,

Jason (Sunday, True, Cyrus and Ishan too!)



Here is a link to her four songs if you'd like to hear more of her beautiful voice.

We're Not Just Standard

I love this man, this doctor, Patrick Soon-Shiong. Granted, I don't really know anything about him other than this video, but I love what he's doing. I love his brain. I love his basic statement of question your treatment. Question the standard. Don't just do what your doctor tells you, ask questions. Double check the research. Is that a lot of work? Of course it is, but what is the price of your life? You deserve the best. You deserve to live. When you get diagnosed with cancer it's overwhelming, and exhausting, and everything happens at once, but things level out (usually), you just have to push through and give all of your energy to figuring out the best path - then maintain. It seems crazy to have to research what your doctors are recommending, but man is it worth it. Doctors often have different opinions about dosing, about treatments, about what is best. Also, in my experience, and in talking with cancer friends, they downplay short and long term side effects. Anyway, I'd better hop off my soapbox or you'll end up being turned off of the video and that would be a serious tragedy. This man is incredibly exciting. I am so grateful for private cancer businesses. Heaven forbid we have to rely on the government to save us; we all know how bogged down it is.

You guys, cancer is a multi-billion dollar industry. What we don't realize is that we're customers, that we can drive demand. We have power if we start speaking up with our pocket books. Yes there's the issue of insurance, and that makes it tricky, but this is and isn't about money. It's intrinsically intertwined, but it's more than that. We have to stand up and get off the assembly line, and analyze the big picture. If we're going to endure treatments, and everything that goes with cancer, let's make sure it's going to work. Let's make sure it's cutting edge, that it's the best. One of the worst words, one that gives me a visceral reaction, is "standard". Who ever wants to be "standard" in any area of life. I don't. Don't settle for it either. (Click the image for the video or click HERE.)

SHAPE Magazine Interview

Over the holidays, I was contacted by one of SHAPE Magazine's associate editors about an article she was writing about the language we should use when we talk about cancer. If interested, you can read the article below. The hard part in being interviewed is that things always come up later, things you forgot. When I talked to Dan about it we discussed how in the past I used a lot of "war" terminology. I always used to feel like I was in battle, that my body was waging a war against cancer. I have since changed my view. It was too exhausting to think that I may be "fighting" for the rest of my life. I knew that I didn't have the stamina. Fighting is exhausting. Now I see cancer as unhealthy cells that may be in my body. I see them as damaged, bruised, weak. But I also believe that my body can heal the residual cancer cells in my body, or perhaps turn their activity "off", with my immune system's help. I don't completely know if that's a scientific fact, that cancer cells can differentiate into healthy cells, but I like to think it's possible.

Regardless of how I look at it, we all have different perspectives and they're all right. It's hard enough as it is to imagine us all having to feel the same way. I think that whatever terminology that's comfortable to you is how you should describe the experiences on your journey.

I was shocked to be contacted, and it was an honor to be interviewed. Happy New Year you guys. I love you all.

Change is Coming

We are on the cusp of serious changes in the brain cancer world. Serious changes!! I can't even believe how fortunate I am to have been diagnosed during this time. Imagine, the first fMRI (a scan to navigate the brain before surgery so that doctors can avoid healthy systems and only cut out tumor tissue) was in the early 1990's. Eeeek! I'm 10 years older than the fMRI. Yikes!! If I wouldn't have had an fMRI for my first brain tumor resection, I could have come out with the permanent loss of my speech, and motor movement. Holy cow would I be a different person. A lifetime in a wheelchair? A permanent inability to speak? A permanent inability to read and process language/speech? In ability to communicate? Would I have essentially been a vegetable? Ugh. That makes me feel viscerally ill, then immediately relieved. Thank you for those who have blazed before me. And now, it is my duty to help others who may come in my path.

I can't share the super secret details about this new badass cancer fighting company out of San Francisco until it launches in February, but please know that things are about to change. This is going to blow your minds. I'm not saying this to be a jerk, or to just dangle my secret, I'm saying it because it's going to bring more hope and save more lives than anything I've ever witnessed regarding cancer care.

If you're dealing with brain cancer, you know that not much has changed in treatment for decades and decades and decades. Why? We know, YOU know that so many things can help fight cancer, and yet brain cancer has a horrible cure rate - in fact almost all cancers have a horrible cure rate. Why is that? We know that it isn't because there aren't things that work. Is it because it's hard to institute change? Because it takes forever for clinical trials to complete? Is it because clinical trials usually only use one treatment, when it's clear that to fight cancer you need to have multiple cancer fighting modalities? From my own research, and now for the past year with astrocytomaoptions.com's research, I know that there are all kinds of things that fight brain tumors. But why is it that the research is published, yet not instituted? And why don't we hear about it? Why aren't doctors familiar with what works? With off-label drugs, and diet, and nutrition, and clinical research? And meanwhile people are dying. They're DYING. For whatever reason that they don't help us, be it their fault or not, it's unacceptable. And the only way that things will change is if we institute change ourselves. Reference the fight against HIV/AIDS. They demanded change. They marched for it. They screamed at the top of their lungs because people were dying. Why aren't we doing that? Why aren't we pissed?! Oh wait, we are pissed, but it's complicated. We're tired. We're confused. Our disease afflicts our brains, our epicenters. It effects our energy, and our thought processes, our reasoning, and our logic centers - it's different for everyone, but ultimately, it makes it very hard. We don't know how to make the change that we want to see. But for the first time, I just caught a glimpse of hope about a new system of treatment, and it's going to be public in February, along with the trailer for a new documentary about brain cancer, featuring Ben Williams, PhD., also available in February. (If you're not familiar with his amazing story click HERE.)

I hope this trailer excites you as much as it did for me. Complete goosebumps. And I hope it ignites a fire. Everything is culminating in February, it's all coming together. It's time to take charge, and start demanding change, and I can't believe I'm alive, and part of this movement. Albeit a small part, but still a part. Please let me know what you think about the movie.

Enjoy. (Click image.)

Pick Positive

Wow, life has been in the fast lane lately, I havent even found the time to post, but here I am. I'm back!

As I rode the train to the airport this morning I thought about how much my life has changed. That it was put on hold, due to the tumor, causing a necessary pause. A scramble then a freeze. And now, like the thaw from a very long winter, my leaves are unfurling, and I may even flower this year. Do I still get scared? Hell yes. Every day. I have all the same cancer fears, but the stubborn voice in my mind says, "Don't borrow trouble." I want to live until I can live no longer. I want to laugh, and dance, and read, and hug, and learn, and share, until my last breath. Life is so freaking fun I can't even stand it. And people are so nice. Why focus on the negative? It's so boring. 

So now I'm at the airport meeting my buddy Linden. I think I've mentioned her before, but can't remember, she's fighting an AA3. We're headed to San Fran to check out a new cancer research facility. Although, I don't know if I can talk about it much yet, as it isn't up and public. So we'll leave it at that. Suffice to say that there is more hope out there than people can even imagine. So keep fighting, keep smiling, keep those negative voices down. 

It's another beautiful day.

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 lives in a legal state, I figured (after researching, and talking to fighters who use it as treatment) I might as well add it to my protocol. You might think I'm crazy, or that it's overkill, since I have now gone two years without tumor growth, but I'm sure you've heard me mention the fact that tumors are crafty little fellas that weasel their way back even during treatments. It's almost as if you're never safe. The moment you think you're golden, it'll rear its' ugly head.

I'm sorry that I'm not going to thoroughly explain the facts of my decision, but I figured at least I would throw it out there and you can research for yourself to decide if it's a legitimate form of cancer treatment, or seizure treatment. Ultimately, I am embarrassed that I was hesitant to share. People are constantly telling me how surprised, and grateful they are about my willingness to open up, but everyone has their limits, including me. I would have been perfectly fine keeping this private. It would have kept me from being judged, which is incredibly appealing, but you know what? This isn't really about me. This is about an amazing seizure and cancer fighting treatment that I think everyone should have access to. (I mean, come on, why else would they be doing cancer clinical trials with it!? It's because there's something legitimate about the plant's properties.)

When I started, I was doing the Rick Simpson protocol. You start with a dose of the oil in the size of a grain of rice three times a day, for four days. Then you double the dosing for the next four days, then you double again and treat for four days, continuing the schedule of increased dosing until you hit a gram per day. I worked up to three grains of rice three times a day. It was awful. I hate feeling high. It made me unable to function. But, it was during the month before the MRI and I was really scared about the scan, so I tried to dose up as fast as I could. What I found was that, although I hated the "high" feeling, it was magic for my anxiety (duh), and stress (duh), and sleep (duh), and seizure activity, and skull pain which is invasive, and constant. I don't really complain about my pain because I feel like dwelling on it exasperates the issue. But it is real, and never used to go away, and the fact that medical marijuana mitigates those issues is amazing to me. It's not a miracle, and it shouldn't even be a surprise because there is tons of literature and research to sustain those claims. It's not just my word. As an aside, the day that I had my seizure, I missed two doses of oil because I wanted to be 100% with my wits about me as I was waiting for the results of my MRI. I wanted to be able to process the information in an objective way in case we needed to make major decisions.

I buy the oil from a co-op that rigorously tests their products, and it comes in a 2:1 ratio of CBD:THC. I currently work with a 48% CBD to 24% THC, but I want a second oil with a 0.3 % THC level because then I can take as much as I want throughout the day (don't forget that the CBD doesn't have psychoactive effects, and it's the major seizure stopper). That's the goal, to be able to dose all day long to prevent seizures. I have since stopped taking it during the day, instead I dose at night, a few hours before bed. Ingesting the oil orally takes three hours to get into my system, although for others it's different. I would still take the higher THC oil, I would just continue to ingest that specific oil before bed to avoid any unwanted side effects.

Here are two wonderful videos that I hope you will take the time to watch. They explain a lot:

I feel crazy saying what I'm saying about medical marijuana. I believed a lot of the negative hype about weed, but as a gardener, researcher, cancer fighter, epileptic, and take charge kind of woman, I have drastically changed my stance on marijuana. I am in awe of it. And I feel like people should have the right to grow and ingest a plant. I realize the complications of teens, and recreational use, and impairment while driving, etc. but I'm getting very sick of people telling cancer patients what they can and can not do with their bodies. We're forced into toxic treatments that don't have acceptable success rates. You guys know me, I follow the Hippocratic Oath of, "First do no harm." Some people debate on whether or not medical marijuana causes harm, but it is not deniable that radiation and chemo are much more destructive than hemp oil. No one has ever died from it. You can't overdose. An overdose of hemp oil is just sleep. That's it.

I have friends in states across the country who are fighting active stage four cancers and they deserve the right to try whatever they need to survive. Period. That is why I am sharing my story about my medical marijuana use. My friends don't deserve to die just because of where they live. They should get to have access to the same life saving treatments that I do. They should have the right to improve their quality of life, to abate their pain, and sleepless nights, and overwhelming anxiety.

I feel like I'm leaving out so much, and I'm very nervous to hit the "post" button. It's scary to put yourself out there to be judged, for people to have opinions about the choices you make in your life. But it is important for me to be an advocate, to step out from the shadows, and be honest about the incredibly wonderful effects that marijuana has had on my life. No one could be more surprised than me. I am exceedingly grateful that I continued my research and was able to keep an open mind so that I could benefit from this amazing plant.


Here are a few teasers, but please do your own research and decide what you think.

Multiple Cancers
"Cannabinoids could provide unquestionable advantages compared to current antitumoural therapies: (1) cannabinoids selectively affect tumour cells more than their nontransformed counterparts that might even be protected from cell death." - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1617062/

Breast Cancer
"Analyses of the tumors revealed that cannabinoids inhibit cancer cell proliferation, induce cancer cell apoptosis, and impair tumor angiogenesis." - http://www.molecular-cancer.com/content/9/1/196

Brain Cancer
"Results obtained by our group and others during the last decade have shown that THC, the main active component of marijuana, reduces the growth of different types of tumor xenografts including gliomas."- http://mct.aacrjournals.org/content/10/1/90.full

"Both cannabinoids (THC & CBD) can reduce cell numbers by inhibiting cell-cycle progression and cell growth as well as by triggering apoptosis and engaging autophagy (19), and are also antiangiogenic and antimigratory (15). The two compounds have also been combined in a preparation that is currently licensed to treat multiple sclerosis, which is now undergoing trials with glioma." - http://mct.aacrjournals.org/content/early/2014/11/12/1535-7163.MCT-14-0402.full.pdf+html?sid=c0dd7be7-3079-4308-96f2-3393d5e28e62

Carrageenan Conspiracy

This is random, but I'm really excited so I have to share. To begin, I have to preface that I am addicted to ceremonial grade matcha green tea (it's shade grown green tea leaves ground or milled into a fine powder). I drink a glass or two, or three each day. It's known as one of the most powerful anti-cancer compounds, and it is my crack. No kidding, when I started drinking it regularly, about a month or two ago, Dan was like, "What's the deal, you are even goofier than normal. And your energy is insane." I told him my secret, and he laughed. But laugh all you want folks, it's the most amazing mood booster I've ever had. Sure, caffeine gives you energy, but a boatload of antioxidants mixed with just a little caffeine (it's a natural byproduct of the green tea) is the way to go. Hence the matcha. A good ceremonial grade matcha smells like grass, and has a vibrant green color, and as you drink it you know you're giving your body exactly what it wants.

Now, Dan can't stand the taste, and I admit I don't love it, but I have been making it with a few dashes of hot nut milk which creates a luxurious flavor and texture. I had been using unsweetened almond milk, but then I remembered that carrageenan, which is in the majority of nut milks (among other products), is really bad for you. Like really, really bad. Cancer causing bad. So, I just pulled up a couple of notes on carrageenan as a teaser (hopefully it'll open your eyes if you weren't already familiar)....

"Carrageenan predictably causes inflammation, which can lead to ulcerations and bleeding," explains veteran carrageenan researcher Joanne Tobacman, MD, associate professor of clinical medicine at the University of Illinois School of Medicine at Chicago. She says the food ingredient irritates by activating an immune response that dials up inflammation. Her previous work showed a concerning connection between carrageenan and gastrointestinal cancer in lab animals, and she's involved with ongoing research funded through the National Institutes of Health that is investigating carrageenan's effect on ulcerative colitis and other diseases like diabetes. (Prevention Magazine)

That's the crazy thing, inflammation feeds cancer. Inflammation feeds disease. And what I find the most disconcerting is that our government knows that carrageenan is cancer causing, and cancer promoting, and they don't limit its' use. Or ban it. There is all kinds of research being done at the National Institute of Health, which is a US government organization, proving the dangers of carrageenan. They know it's bad. They know it's a killer, and yet our government doesn't protect us.  

I have learned the hard way that I have to be responsible for my own health. That no one is going to fix my cancer, that no one person has the answers or ability to heal me, but I can be an advocate for myself. I can read the fine lines and hold myself accountable. I can not expect our government to protect me. It is my responsibility to investigate what is good and what is right for me and my body. And that is what led me to create my own nut milk yesterday. And holy cow it is delicious! And it's easier than you think.

Ingredients 
1 c raw cashews
4 c filtered water
1/8 tsp sea salt
dash of vanilla extract (to taste or omit)

1. Soak the cashews overnight or at least for 4 hours
2. Rinse the cashews
3. Toss the cashews, two cups of filtered water, the salt and vanilla (if you chose to add it) into a quality blender (I use a vitamix) 
4. Turn the blender on to low and slowly increase speed. Blend until it's nice and frothy, and thick. At this point you can add part of the final two cups of water, or all of it. I like my milk to be thick and creamy, similar to whole milk or cream. If you're more into 1% or fat free milk, add in all four cups. Blend it in nice and good, then pour it into a sealable container for the fridge. Note: The milk will further thicken once in the fridge.

I love this nut milk because, unlike almond milk, you don't have to strain anything, or remove anything. You're using the whole nut, you don't remove the fiber. The entire recipe is so easy it's ridiculous! 

Although in 1972, the U.S. Food and Drug Administration considered restricting dietary carrageenan to an average molecular weight > 100,000, this resolution did not prevail, and no subsequent regulation has restricted use. Because of the acknowledged carcinogenic properties of degraded carrageenan in animal models and the cancer-promoting effects of undegraded carrageenan in experimental models, the widespread use of carrageenan in the Western diet should be reconsidered. (US Library of Medicine National Institutes of Health)

I'm not trying to preach, I just wanted to share because I'm fearful about what's happening to our bodies, and I care about you and I care about people in general. It's amazing how important it is to read the ingredients in our foods. It's especially important to research ingredients if we don't recognize them. I mean, what the hell are we eating these days?!? We're eating non-foods. We're eating chemicals, and it can't be good for us. It's not natural, but it's hidden in our natural foods - like almond milks. People think that they're helping their bodies by choosing a healthy milk alternative, but who knows, perhaps with the carrageenan the nut milk is just as detrimental as hormone filled cow's milk. I'm digressing, just ignore my little rant. I rant because I'm frustrated that there are non-foods allowed in our food supply that cause and promote cancer. It's a bunch of crap. But don't take it from me, you can make your own decision on what you think. Regardless about whether or not you agree with me, just play around in the kitchen and try this delicious recipe. I really think you'll like it. :)

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 even understand concepts. My IQ was ridiculously low. I remember undergoing hours and hours of testing only to be told by one of the top neuropsychologists at University of Washington that I would never recover and read again, that I would never be capable of high level thinking or processing. I remember sitting in that same doctor's office with Dan as we went over the results, as tears streamed down my face. Man how things have changed. Not that I'm that smart, but I'm more than getting by. 

So what do I do now? How do we celebrate?!? For starters, I have decided to start training for a half marathon. I haven't run a half marathon since before I was diagnosed, and have been hesitant to push myself too far because I was afraid of seizures, exhaustion, running down my immune system, elevating my blood glucose for long periods, you name it, I was scared of it. But, I was very inspired while watching the Iron Man coverage this weekend, and I reminded myself that life is short, do what you enjoy.  So I'm starting with a half marathon in January, and my other goal is to do ChelanMan in July, the Olympic length triathlon. I don't know if you guys know this, but when I was diagnosed, I was supposed to participate in the Olympic ChelanMan that summer (I was diagnosed in April) but obviously, that didn't happen. I feel like things are coming back around full circle. I honestly never thought this would happen. It would have been too much to hope for - to live a normal (ish) life. 

So if anyone wants to join me for ChelanMan (you've got several months to decide) please please think about it. Let's get nuts. Let's get silly and have some fun and sweat, and laugh, and feel alive.

UCLA MRI Results!

I just received an email from my doctor at UCLA, here's an excerpt: 

"There is no evidence of tumor recurrence/progression.  So, we
have no new recommendations at this time, other than to get a follow-up
MRI scan in 6 months."

WOOT WOOT! Heck yes!! You guys, we're doing it!!!!!! We have dealt with recurrence before, but we came back stronger, better informed, more diligent, and right now we're enjoying the payoff. This lifestyle is a lot of work, but damn if it isn't worth every ounce of effort!

Thank you for the continued support, I am incredibly grateful for all of the help along the way! This feels like a huge step toward my #1 goal in life, which is to get the opportunity to grow old, and wrinkled, and grey. That's all I want in life is to get to ride that journey. And these results move me closer! 

I still can't believe this is happening. A six month window between MRIs is a very big deal. It's by far the widest spread between scans that I've ever been allowed to do.

Sometimes it's too much to think that I'm going to be okay, that I could beat this tumor stuff. I'm often only able to "hope" for things. I'm never confident because I feel it's important to acknowledge that people are often at the mercy of fate, or timing, or luck, or God. Whatever you want to call it, in this moment, it has fallen on our side, and I'm grateful to be basking in the glow of good fortune. I've been on both sides, and my fate will no doubt oscillate throughout my life. I am just so grateful, I can't even put it into words. We work so hard, my whole family, and it feels wonderful to get great results. You guys, we're doing it!!!!! YESSS!! 

Still Waiting

Still waiting to hear back from UCLA's tumor board. My doctor was out of town last Friday, and she wanted to review recommendations before addressing patients, so my results were postponed. Then I gave Monday for them to catch up, and called Tuesday, but of course it was Veterans Day, so the offices were closed. Now it's Wednesday, the day of the week that UCLA's tumor board meets, so I'm sure the offices are backed up and crazy.

I'm still just as nervous as before, but very hopeful that when we do hear my results, everything will be fine. In fact, maybe I'll call right now and see what I can find out. The waiting is the hard part. Living with cancer, and scans, is an incredible lesson in patience. :)

Flipping The Switch

Oh you guys, it's almost here, we should know tomorrow about whether or not UCLA believes I'm "stable" or whether they'll want me to fly down for another Dopa PET. This is such a weird life, just saying those words. Do you ever find yourself stopping your gait, turning your chin up to face the sky, and just smiling with pure joy about how magical life is? I can't explain it that in this moment, this moment of uncertainty about the direction of my life, I find it amazing how deeply my soul is constantly overflowing with gratitude, and happiness, and wonderment. Half the time I just laugh at myself, at how annoyingly happy I am. It's absolutely ridiculous, yet I love it because I know what the alternative would be. I'm still logical, and analytical, and I still have bad days, or bad moments, but somehow I have a serious constant influx of endorphins.

Even though I can't really explain it, I do know that this inner joy, this ability to find silver linings in even the most dull, dark places, is the biggest gift the world has given me. I wish it was something I could bottle, wrap with a bow, and give as gifts. I hadn't really thought about whether or not my attitude is "normal" for a person with my diagnosis until I kept getting private emails from patient's families and friends, from people worried about brain tumor fighters who want to give up, are depressed, or are riddled with grief. Some have more progressive disease, others have less, but ultimately it doesn't matter how serious a situation is, because the power comes from whether or not it debilitates that person.

It hurts me physically when I hear each story, because I know that there is nothing I can do. I try to share my story, or give tips on how I trick myself into being happy even when I'm scared, but ultimately, happiness will always come from within. No one else can fix it. I've had my share of terrible times, and of course I've already had one recurrence, but instead of that overwhelming me, or derailing me, I used it to get stronger, to encourage myself. I used it as ammo. It's those silver linings that keep you going, that trick you into trying. Like this morning, I fried up two eggs for breakfast, and just the little detail of using my mom's old orange enameled cast iron skillet - her favorite, that she passed down - reminded me all about what my mom has given me, everything she has done, and continues to do. I think about the last time she hugged me, the last time she and I laughed together. In a series of seconds I'm filled with love, and it's escalating, it's like a catapult. I'm engulfed in gratefulness, for my life, for the gift of resilience, for the gift to be here on Earth, for the gift to experience all of this beauty, and love. It's easy for me to be happy, it's a place I go to often, I know the path by heart.

Was I always this way? Was it always this easy? No, it hasn't been. I've been depressed before - even needing anti-depressants, but it was long before diagnosis. But from the moment I was slapped in the face with the news of my brain tumor, life instantly became "real" and I internalized the fact that this isn't a trial run. This is it. This is all we've got. We've got this one life, and in any moment we can decide how we choose to interpret what's happening around us. We have the choice to be whomever we want to be. And we can choose how to best handle each situation. Those facts, the facts that we have great control over how we view the world gives me great strength. It flipped a switch in me, and I am so glad it did. Now I just want to love people, and laugh, and have great conversations, and hug people, and help others in any way that I can. (God, am I just obnoxious?)

I don't know why I'm so fortunate in life, or why I'm still here - a lucky one. I don't know how I became so blessed with all the wonderful people in my life, but I don't take it for granted for a single second. I know it can all be taken away in an instant.

Okay, I'm off to work more on an art piece for friend....

Surprise!

Who is the sweetheart that sent this package?! It didn't come with a note....

Regardless, THANK YOU!!!! :) What a wonderful thing to do! 

WPIG Annual Art Auction

Good Evening! Thank you for all of the kindness, and patience as always during my seizure hiatus. You guys are all so wonderful!!
 
Seizures are down; I'm doing good. The other day, you might notice, I created a new box in the upper right hand corner of the blog. It tracks my progress avoiding attacks (seizure attacks, not maintenance man attacks - ha!). As Dan would say, I always have to have a competition. I love to see if I can break my own records. It's really just a mind game, a distraction. And, when you break your records, you have something to celebrate. :)

I'm disappointed that I had those two seizures on Monday; am I ever going to be free? It's really not that big of a deal, the tumor is obviously the main issue, but man, wouldn't it be nice to not have to worry about having a seizure? I hate it when I can't control my body, or my mind. And it's more than hating the loss of control, it's literally terrifying. You don't know where the energy of your mind is escaping to, but you can't access it. And seizures aren't harmless. Not only can and do they damage your brain, I also know brain cancer fighters who have died from their seizures. Whatever the hell they are, they're nothing to mess with. Like the power of the ocean, it's important remain reverent.

I have a healthy respect for seizures, but I won't live in fear, so last night Dan and I went out with friends to the Women's Philanthropic Investment Group Art Auction. You may have heard me mention it before; I donate a piece of art every year. This year supported YouthCare, to help homeless teens. I wasn't that familiar with the organization before, but by the end of the night I was really impressed. The founding story, and what they do is absolutely amazing. It didn't hurt that it required me to get dressed up and out of the house to see bunches of our friends, but it was also exhausting, and I'm afraid I picked up a bug from the crowd. My throat hurts like nobody's business. Dang it.

In general, I feel like I'm getting better and better about bouncing back from seizures, and because of my trip with First Descents, I take calculated risks so that I am out living life. I may even say that I might be getting the hang of this tumor/seizure life. Knock on wood! I feel like I probably just jinxed myself. I hope not.

I can't remember if I mentioned it or not, but the final MRI results, which is UCLA's review, will be available on this Friday. Fingers crossed they agree that the tumor is stable. Truthfully, I panicked when I read UW's radiology report where they measured my tumor area at 4.1 x 1.2 centemeters. I never want them to measure anything. It's just like how you never want a doctor to call you back quickly after going in for general testing.

October MRI Results

Of course, of course, of course, the day I go to get my MRI results, I have a seizure. (I was at 4.5 months seizure free. DAMN IT.) In fact, not to be outdone, I had two in quite close succession (a window of about 60 minutes. And it took forever to come back down from that short circuit. So stupid. It was humiliating, too. I was in the shower, and started feeling "off". I got out but was confused. I was walking back and forth in the house trying to figure out what what happening, all the while, curtains are peeled back throughout the house and I'm a drenched cat, totally naked. I couldn't think to dry off. Or manually get clothes on. Hopefully I didn't terrify pedestrians walking by. In those moments it's too difficult to even function. And the more you do the more it spurs increasingly aggressive seizures. So I made my way to the bedroom snatched a phone and hit redial. Lucky my mom answered. All I could say was, "mom, I am alone. I'm having a seizure. It's worse than normal. It's going to get bad. I may lose consciousness. Please call Dan to come home." Then I hung up. Once in bed I couldn't move, I was paralyzed. I couldn't feel my right side, then came the painful throbbing. It started in my right arm, and spread up to the brain, then it flushed out from my right hip until my whole pelvis was throbbing in pain. I had never had effects on my pelvis, so that's a new seizure detail. I also don't think I've ever had two seizures in one day. Not a record I wanted to break.

I still made it to the hospital this evening - just before they closed - with Dan's help, to get the radiology report. I had to.

Here it is:

Findings:

There has been prior left frontoparietal crainiotomy for tumor resection. A rim enhancing collection is again seen adjacent to the resection site. On today's study this measures approximately 4.1 x 1.2 cm. This is stable in size compared to previous. No new areas of enhancement are seen. There is unchanged surrounding FLAIR signal abnormality which extends to the ventrical margin.

The midline structures are central and the ventricles are stable in size with minimal ex vacuo dilation.

Impression:

Stable resection cavity and surrounding FLAIR signal when compared to multiple studies. No new enhancement is identified. 

It all looks pretty good to us, but of course we need the final analysis from Dr Linda Liau's tumor board at UCLA.

I would prefer that they didn't have anything on the report to measure (ex: 4.1 x 1.2 cm). But hopefully it's just innocuous. 

For now. I must rest for the remainder of the week. I am going on total and complete hibernation. 

We'll see how that goes. ;)

For tonight, we toast to more good health, to miracles, and hard work, and smiling, and laughter! It all seems to be working pretty well. 

October MRI Completed

Just finished the MRI. Time in the tube really gets you thinking. To stop myself from worrying (especially when I can feel the contrast dye make its' way into the tumor cavity which terrifies me) I spent time repeating my mantra, "thank you, thank you, thank you". I forgave myself for not being able to eat healthy all the time. I forgave myself for not working out enough. I forgave myself for not being perfect. And I spent the rest of the time swollen with gratitude. I am so grateful for this life, this husband, this family - immediate and married into, I'm grateful for our amazing friends. I'm grateful to have a home to live in. I'm grateful that I'm capable of so much, like bending my body at yoga. I'm grateful to be alive, to be here on Earth. I'm grateful all the time, for everything. It's probably annoying, but it certainly makes me really happy even when life is unsure. I guess the thing I've learned recently, perhaps just now as I write this, is that you don't have to have answers to be happy. You don't have to have everything be good news, or the best life situation. Just by being grateful, and forgiving myself for my downfalls, my humanness, keeps me happy. What a cool ability, to have control of our minds.