Please Forgive Me

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.

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.