I am trying to pull myself together after watching the upcoming documentary, Surviving Terminal Cancer. Remember when I posted the trailer a few weeks ago? Its about the failures, the downfalls and the possibilities of treating brain cancer. How we have to blaze our own trails because of the broken system. I was able to preview the documentary because I was asked to attend the premier at the Lincoln Center in New York, and join the panel that follows the viewing.
Other panel members include:
Chair: John Lapook, MD (CBS)
Andrew Von Eschenbach, MD (ex FDA, ex NCI director)
Robert Hariri, MD, PhD (Celgene)
Ben Williams PhD (20 year GBM survivor)
John Boockvar, MD (Lenox Hill Hospital)
Colin Hill (GNS Healthcare)
Me
I'm thrilled, and somewhat stupefied, about the entire thing. I'm excited to be a part of this movement to demand change, to acknowledge the issues in our care, the issues in the system. I am slightly intimidated by my highly educated co-panel members, but as you know I am passionate and have quite a bit to say about the brain tumor system.
The free premier is on February 18th, a Wednesday. (There is also a London premier on Feb 4th for those across the pond). The reception begins at 6:00 pm, the showing begins at 7:00 pm, and the panel will follow the documentary. As I mentioned above, it's being held at the Lincoln Center (Walter Reade Theater). Also, there isn't a budget for a videographer to
record and stream the panel, and I'm hoping to find a way to at minimum
record the discussion and questions. I feel like it's very important to
get the discussion documented for historical purposes, and to continue
the momentum of change, to keep brain tumor fighters in the know. I've already gained permission by Dominic Hill, the producer/writer/director to record the panel, so if any of you have friends, or family, in the NYC area that have a videography background that would be willing to donate their time, and equipment, to record the panel it would be amazing! I realize it's a long shot, but it would be a profound gift. This is how we demand change, by spreading the word and working together. We know that the current treatments don't save our lives, but it doesn't have to be that way.
The charity couldn't afford to pay my travel and lodging, or any expenses for that matter, to NYC, but Dan and I felt that this opportunity was too powerful to pass up. Do you ever feel like you can't afford to do something, but in the same vein you can't afford not to? That is why both Dan and I will be flying to New York, and why we will be a part of this movement. I want change, I want to save lives, I want to stand up and be a part of the solution, even if it's difficult. Sometimes it takes risks, and sacrifice in order to help. This was never meant to be our whole lives, it was never meant to be a life purpose, but I feel like it chose me. And I know I can help. I know I can be a catalyst to redefine the brain cancer journey. Thank you to all of the people along the way that have helped pay for flights at times, donated air miles, or donated toward my treatments. Thank you for your love and your support, you have helped keep me alive, and you are the reason why I know I have to do this.
You have paid it forward to me, and now I will continue on in the same spirit. This is one hell of an opportunity. Seriously, how did I get this fortunate!?! I gotta go pinch myself...
We fell into a little piece of heaven on Earth. Literally. Dan and I have moved. And it's a little home, that we own, that is magically cheaper than renting in Seattle - and trust me we were renting on the cheap. What a blessing. Dan and I keep pinching ourselves, between smiles and embraces we say things like, "How did we get so lucky?" "Why do we get to live this beautiful life?"
I used to feel like I had to be in Seattle, in the city, the epicenter, to be functioning. I needed the metro, the walkability, the mobility on my bike - all my friends were there, and I can't drive very far. But as Seattle continues to boom, and expand, and explode, the prices and the cost of living was an uphill battle. We were struggling to maintain, and with an ever present fear of a recurrence and the expense of current ongoing treatments, we started exploring other places to live. We considered the Washington peninsula, we looked at Camano (I refuse to call it an island since it doesn't require a ferry), we looked all over the north coast of the state, and eventually we found our perfect little spot. Edmonds. If you're not familiar with the area, or the state, Edmonds is a little seaside community just 25 minutes north of downtown Seattle.
When our mail person, Michelle found out we were moving, and we told her where we were headed, she laughed, cocked her face and said, "Are you retiring?" That's the reputation of Edmonds, that it's full of blue-hairs. But as you know me and my retirement home volunteering ways, it was one of the many things that drew us in. There's still a PCC, our local co-op grocery store that I love so dearly. We have a lovely dog park right on the water, full of sandy beach, and dog obstacle courses which Emma loves. There's a train that takes you directly into the city in one stop. Talk about an upgrade, from bus to train! (And it's the same price.) The whole town has a speed cap of about 30 miles per hour which is rarely met since no one is in a hurry - practically everyone's retired. It's the perfect place for me to drive. It's the perfect place for me to rest, to find my zen, to heal, and thrive. Our little house is less than a 10 minute walk to a hidden beach. Everywhere you go there's views of the Olympic mountains, and the emerald waters of Puget Sound. When you fill your lungs, each breath feeds you with salty ocean air. For an island girl and an island boy, it's as close as we can come to home.
I can't believe we have a home. And it has double paned windows! It's unfathomable how warm we now are; we're no longer cold to the bone. We have a tub for bathing, what a luxury! I can't wait for spring, to plant a jungle of a garden, to feed our bodies and our souls. I've joined a Monday morning writing group at the public library, and well over half have published at least one book. They're inspirational, and confident. I walk around downtown and visit with the shopkeepers, all but one so far have been family owned. It's a dream. But it's not. This is real, and it's ours; we're a part of it, and I am so grateful. Life keeps evolving, and you never know where it's going to take you. Just a few months ago we never thought we could afford a home, and continue my treatments at the same time. But when you expand your view, and reevaluate your goals and dreams, sometimes you surprise yourself. It's not as easy to see friends, but we keep in touch just the same. I'm looking out our living room window at the old growth pines across the street as they sway in the misty air and I'm filled with relief, and pure joy. Even through the troubles, and the heartache, and fear, I'm constantly reminded of our fortune. It's something I will never forget because I wear it. It's tattooed on my heart, on my soul.
I just created my first marijuana smoothie!(I'm such a nerd, I should probably call it weed or dope.)
It's absolutely delicious!! I used a little less than half a green apple, a large handful of marijuana leaves, and a handful of salad greens in water. It tastes minty, and fresh. And although, because it isn't heated, there are no psychoactive effects I still felt a slow wave of calm roll over me. It was wonderful. The acid (raw) forms of THC and CBD are supposed to help with inflammation, nausea, muscle spasms, and tons of other things, even anecdotal stories of it fighting tumors and cancer. And it's just like eating lettuce, or basil. It's fantastic!
You guys know I love greens, and plants, and this is right up my alley. I am very grateful to have these fresh leaves, I wish I could afford enough, or have the space and privacy to grow forests full, so that I could eat a smoothie or two per day. I can only imagine how wonderful I would feel! For now I'm happy for what I've got.
Oh you guys it's so weird. There is this thing that I am realizing that many cancer patients go through. They have aggressive bouts of exhaustion, then they get depressed that they're not out doing things, not conquering the world. One of my beautiful camp buddies posted a dark photo of herself in the cavern of her bed. Her hair was mussed, her face pained. She was berating herself because she isn't as productive, and accomplishing as she was precancer, prediagnosis. Now this badass girl, I am not exaggerating, has had more cancers/medical issues, more surgeries/treatments/etc. than most humans will in their lifetime. The girl has been pin-cushioned, poisoned in the name of survival. She is a force, one of the largest personalities I know. I remember just watching her emitting her fearless vibes, her mastery of the rocks, the confidence in her soul, and when I saw her recent Instagram, my heart ripped for her. It still brings swells to my eyes. I had no idea how much this overwhelming exhaustion, and self doubt permeates the cancer world. It seems crazy when I look her, so obvious that she's being too hard on herself, but also I can relate perfectly. It's something I live everyday. It's so frustrating for us. And it's impossible to explain because we don't understand it either. We can't understand why our bodies and minds won't just do what we want. Is it all the cutting? The toxins, and foreign substances that have cursed through our veins? We don't know, but instead of just being patient with our bodies and our situations, we get sick of it. We get sick of being sidelined, sick of not being able to be the person we want to be, the person we once were, the person we should have been before everything changed, before it was taken away. I realize, conceptually, that I may never have the same energy, that I may be riddled with bouts of bedridden exhaustion, almost a depression or sadness, but I can't stop hoping that it will get better, that one day I will wake up and realize that I'm healed. That I'm back for good. Completely. Until then, I hope and pray that it gets better, because I know we're never going to give up and just allow ourselves to be ruined by this.
You guys are so patient with me. Thank you so much!
I hung out with a buddy this morning, and it was so refreshing! And fulfilling. There are people that just get you, that make you laugh, and understand your trials, and it's priceless. With her help, I am coming to the realization that if I take care of myself (just like you guys said - you are so smart!), I won't get worn down. That if I don't take time out each day, I will drown. That this life alone is a lot, tack on a brain tumor trial, then tack on putting your story out there online, then tack on helping people that come to you for advice, then helping others research their cancers. It's taxing, but no one is trying to tax me, it's me putting it on myself. It is my responsibility to know my limits, it's my responsibility to express that, and let others know if I'm overwhelmed. People aren't mind readers. Next time, my goal is to not get this worn down, to not let it get to this point.
It was hard to get out for a walk today, it had been weeks, but I reminded myself that I just have to put one foot in front of the other. Little by little, before I knew it, I was walking out the door. And it's all part of taking care of myself. I had been treating exercise/meditation like a luxury, not a necessity. This is my health, it has to be a priority. (Say and repeat and maybe it'll sink in.)
Thanks again guys, I really appreciate your insight, and kindness. I can't imagine what my life would be like without all of your love, and friendship.
What's good for me is good for whomever is around me, didn't you guys say that?
Sometimes I wonder what the hell I've done over the (almost) five years. What have I even done? Am I even contributing to society? Am I helping enough? What you guys don't see is that I get so tired. I get these brain flu episodes. I can't explain it; I can't anticipate it. When I don't feel well, when I can't get my brain to unfuzz, I don't blog. I don't complain about it, or write about it very often, because I figure it comes with the territory. I have had three brain surgeries, and with that comes damage of the wiring, of my thoughts. I'm missing healthy brain tissue, tissue that I'm sure the little sensors in my body are still searching for. Anyway, I usually give symptoms a period of time before I panic and post, and now it has been about a month of living in silence. I have been having horrible headaches, but they're only on one side of my head, the side with the tumor. It is just as my original brain tumor headache arrived, it started all over my head, then it shifted and it was only on the side of my brain with the tumor. I could (and can) literally feel the barrier of my midline (the halfway point between the two hemispheres in the brain) stopping the progression of pain. To have this type of headache right now is absolutely terrifying. My next MRI is in April, and I do not want to push it up sooner. If the headaches, and confusion, and exhaustion continue then I will revisit. That may seem different than the usual Jess. I'm known for not putting things off, but there's a fine line between putting things off and not being an alarmist. In the meantime I'll focus more on diet, lowering inflammation, and regular exercise, and meditation, and prayer, and rest.
I'm wondering if a portion of it is stress, these issues, or the majority for that matter. Another thing that I don't tend to write about is that I get contacted daily via email, text, phone, by other friends with cancer, and also several times a day new people find me. Right now two of my closest cancer friends just found further metastasizes. And that was just in the past 24 hours. Those two girls, along with another of my closest friends who also has active stage 4 cancer, need me. And I adore them. I love them. Then I get other people that need help and direction, and I'm happy to do so; those emails are a joy. I want to help people survive, but then I get other emails, so so so many of these emails, of people that don't tell their husbands, their parents, their siblings, their children, that they are battling cancers, and tumors, or diseases, and they come to me for camaraderie, and to vent, and to find a source of support. But the thing is that I am only one person, and I am already exhausted, and scared, and trying to remain healthy. Stack on top of that, my friends whom I adore, whom I want to save, whom I want to cure, whom I want to be around for decades and decades. I want them to be around for a lifetime. And I'm virtually helpless. I'm stuck here. I'm just me. I research for them, I brainstorm, but it's not enough. I want to do more. I want to be there. I want to take it away from them. I want to be the superhero that snags the ticking time bomb of cancer and flies it away at supersonic speeds to another galaxy, returning in the nick of time so that we can all be saved. (Sorry neighbor aliens.)
I want to help everyone. I want to give you strength, but each time I give my strength I have to be replenished too. I can not continuously give. I can not be everyone's rock. From the time I was young I have internalized other people's plights. I was one of those kids who would cry for starving children. When I read your emails, when I hear people's fear, I feel it. I can not live removed. So what I have to say right now is that I am asking those of you who reach out (and as you read this please know that there are tens of people daily, this is not singled at any two or three people) and are carrying the burden in the dark to open up to your friends, and family. Not only will you need that strength and love and support, but also, as my dad recently reminded me, it makes them feel better to be a part of the journey. They appreciate being involved. They want to help us. Of course, you don't have to do anything you don't want, but I guess this is my cry to you, I can not carry everyone else's burden. I can carry a few, but this is not normal stresses. This is life and death, and my friends are a high need group, and in order for me to be a good friend, and be able to handle the reality and research and emotional support to help them, I have to focus and know my limits.
I feel horribly guilty that I can't be everyone's friend, that I can't have relationships with everyone who reaches out. I hear the fear in your voices. I feel what you feel. I want to help. I want to fix. I am so sorry that I can't do it all. I'm so sorry that you're going through this. Even though I'm writing all of this, I hope that you still feel comfortable reaching out if you have direct questions. I really appreciate it when they're short. It's especially the long emails that get me. It takes so long for me to read and think and analyze - it zaps me. I am incredibly capable, but I have limitations, and I have to be able to triage. I can't be attached to my computer and phone all day, it isn't healthy. And the subject matter is so heavy, so dense, so dark.
I'm sorry that I had to post this message. There is nothing more that I want than to help, but I am only one woman. And I'm not trained for this. I'm not built for this. And my heart, which thankfully is quite large (probably big like my huge noggin), is reeling. It is deeply bruised, and hurting for my two First Descents camp friends who have had such horrible news. Fucking cancer.
I'll leave you with this quick video, it's about angiogenesis and cancer. There aren't any great anti-angiogenesis drugs for brain cancer that will cure, but don't forget that food does matter. We can eat things just because we're hungry, or because it makes us feel temporarily better, or we can make our food serve a purpose, to make it count. There are all these little things that we can read up on and learn about to take charge. I'm not trying to imply that diet is enough. I'm only imploring you to get curious, read up, research, Google stuff, and find what empowers you. There are so many times with cancer when we feel helpless, and scared, but there are actions that can help. Never give up. You are capable just within yourself. In any moment you can make choices to change. It's all in you.
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."
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!
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.
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. :)
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.
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.
