Past The Meridian

There's something about the middle of the night, that awakens my soul. It happens every night, almost always around 1:27 am, when I arouse as if morning. Astutely alert. It's become a time of prayer and meditation, and deep reflection. 

I'm down in LA early, focusing on healing my body, my mind, and my soul/energy from the stressors and factors that I believe threw my body out of alignment which has facilitated the accelerated tumor growth. Which, ideally, should help me prepare for the March 3rd brain surgery, which lands on Dan's birthday. 

I arrived, on my own, extremely late Saturday night, and by Sunday, early evening, I found myself huddled in a ball on the bathroom floor riddled with food poising. I had asked my father for a few days by myself before he arrived, to give the illusion of independence - knowing that long periods of solitude in high stress/fatigue ridden periods, lead to seizures, and that my ultimate solitude would be a burden on Dan and my family/friends because they would worry - so I had ended up asking him to join me as a guardian. Anyway, Tuesday afternoon, my dad arrived, and by that point I was long past the ability to hold down water. I was delirious, and weak, so he ended up taking me to the hospital. Between the care I received there, and some amazing care from my friends here in LA, and some badass tinctures, within 24 hours, I was back to feeling human. I'm still on a broth diet, but last night we were able to add sautéed vegetables and tempeh, so that was a pretty awesome success.

I'm here to work on evolving my mindset, and removing negative factors. I've learned recently that in life, and relationships, I have taken on the role of a screen/filter. So when people come to me and unburden themselves with the negative/emotional things that go on in their lives, I process that information, and although, often, people feel better releasing their heavy buildup, I end up getting stuck with the sediment. No one does it purposefully. No one wants to hurt me. I just can't seem to take those things in stride. They weigh down my soul.

When your soul is weighed down, it effects your hormones, especially your stress hormones. Recently, a doctor told me that she believes that my explosive tumor growth (3 tumors, one enhancing), is because of the amount of emotional stress in my life, and that tumors actually secrete growth hormones, strengthening the cancer. She mentioned some sort of tumor growth factor - I can't remember the exact term though, perhaps one of you awesome blog readers know what I'm talking about. I'm not going to research it though, because I don't want it to stress me out. I don't want to focus on the negative. I don't really need specific proof -  I can viscerally feel that it's the truth.

Anyway, I recognize that my environment is paramount to my success in achieving true health, and that means protecting myself from negative influences. Even perceived negative influences - whether or not they mean me harm. I am the only person who can make the decision to put my health first. To make the hard choices to separate myself from situations and people and energy that will not serve my healing. It's incredibly hard to pull back and analyze these things, and focus, truly, on what I need to evolve and grow. 

So for now I have pulled back from almost everyone in my life, because I need a true period of time for reflection, and reconnection with my intuition. To truly understand what will serve me, and what kind of social load I can realistically maintain.

Yesterday afternoon, I had an epiphany. I felt like my whole life, including this cancer journey had lead up to this moment, but that I had crossed a meridian, and was now a tiny speck on a new journey, with immeasurable growth to attain. A Universe full of insight and development, full of lessons, if I so chose to embark, to listen, and to absorb. And I do! It feels so right, so true for me. It's one of the most natural things I've ever felt, to finally find what "healing" means to Me. 

I believe I needed those days huddled in a ball, guts cemented in torture, to bring my body, my mind, and my soul, back to a rebirth. A new kind of evolution. That everything in my life brought me to that bathroom floor, in a loving ground level apartment in Marina Del Rey, full of the sounds of birds, and fresh breezes, carrying the scent of jasmine from the front door. Less than two weeks from a brain surgery, at a time when I would typically be overextending myself, I found myself forcibly aware of the necessity to really recognize my role in my own healing. That if I couldn't start to pull away from the demands of this world, which was creating a proliferation of cancer, and put myself first, I was going to aide in killing myself. 

Healing myself is a choice, and I have many wonderful guides and teachers, both western trained, and others, and with the combination, I am finally finding my stride, my raw self. Once you're cut down to your most vulnerable self, you can build a new sturdy foundation, and that, my friends, is exactly what I plan to do.

Thank you for being patient with me while I revel this process. If I don't respond to your text messages, or emails, or communication on any level, it is not personal, it is not about you or anything you have done or not done. This is about me, and about me allowing myself the privilege to work on my own healing. I'm not sure if I will post another blog before surgery. And in the same vein I might write many. I'm going to feel things out and be true to my inner voice and do what feels best. 

During the surgery, my mom has offered to do updates on the blog to share information as they receive it in the waiting room. I'm sure, though, someone will post the surgery time the night before (which is when they will notify us), we'll post that info for those who may be moved to pray or send healing thoughts to my surgical team, and to me, and the family. For me, I ask you to unburden my family during that time. If you could please turn to the blog for information, instead of hitting up my family's cell phones, it would mean a lot to me. I want them to have the least amount of stress as possible. There are so many of you amazingly wonderful people that care so much about us, and we are all very grateful, but if they're on their phones during the whole surgery, then they won't get the chance to be in the moment, to take care of each other, to support and love one another. I hope for them to have some semblance of calm, and know that I am being healed. These are special moments when we get to come together, and focus on what's right in front of us.

I really do appreciate your support, your kindness, and your understanding for what we're all going through. I hope to write more again before surgery, but if not, truly know that your love and positive energy is tangible in my life, especially in these days while we're dealing with so much. I have such a huge amount of gratitude to all of you. Thank you for sharing your prayers, and for entering me into your prayer circles, and for sharing my journey with your friends, because I can feel their love and prayers too.

I recently finished a fascinating book on Hado, specifically, The Secret Life of Water, by Dr Masaru Emoto. He analyzed water crystals forming in different environments (during specific music, or words, or emotions, etc.), and what he found is that the crystals formed beautiful, symmetrical shapes during [many] times but specifically of prayer. My prayer, and my hope, is that all of your beautiful prayers, and love, and my deep gratitude, may bring my body and spirit beautiful symmetry, beautiful wholeness, as well. May I be blessed with your Hado (Baha'i, Catholic, Christian, Muslim, Buddhist, agnostic....etc.) healing. I'm very very grateful for your kindness, and your love.

Sent this to Dan the morning after I arrived. Wearing his shirt so that I could feel close.
The calm before I fell ill.
I'm wearing it every single night. Should probably wash the funk out, but in my mind,
I still smell his scent.

Thank you, as always, for reading.

Love,

Jess

Can't Mask My Surprise

Always a fan of multi-tasking, Dan just caught me watering the garden with a charcoal mask on. 

In my mind I look like a supermodel.
Pictures like this royally remind me I'm just a regular model.

 

But, I'm in a rush! I have to finish the chores and get packed for a 4 am wake-up. The My Last Days 2 premier in LA is tomorrow!!!! Cripes. That snuck up too fast! We need to scream down to the airport in the morning, and jet off like we're some sort of big deal.

Clearly, looking fly comes easy, so it should be fine. 

This is going to be one hell of an adventure! It's very gracious of Wayfarer to fly us down, put us up, and introduce us all. Let's hope my cold continues to subside. At this point I sound like a two-pack-a-day-er. 

I'll keep up with Instagram updates and try to do a blog post if able.

Bus Bacteria Bad. Brain Bacteria Good.

Hey Guys,

What is it about summer that causes it to go faster, and faster, and faster, until you lose your mind? Or get sick. I get sick every few years, and never in the summer, but lucky me, that's exactly what just happened. I must have licked my fingers after touching things on the city bus or something. (Gross!) But life doesn't stop when you get sick - kinda like cancer.

I'm busy with gloriously fun things like promoting the MLD docu-series with interviews, corresponding with tumor patients/caregivers, and visiting with out-of-town friends, all peppered with doctor appointments.

I'm not sleeping well because of headaches, which is a constant reminder of the fact that my brain tumor is growing again. I'm fine during the day, I'm so busy that I can't even keep up, but at night, as soon as I'm vertical, the pressure in my head grows intense. It's come to the point where I am back to relying on headache medicine. I hate having to do that. I'm grateful that my seizures have remained stable, though, which feels like a Christmas miracle.

I like to think that the headaches are because I'm doing too much, trying to conquer too many things, maybe I'm not organized enough, anything but the mass of rogue cells multiplying in the folds of my brain.

Last weekend I turned 36, and although birthday goals are a newer thing for me, I have it in my head that I want to live past age 40, and not be sporting a wheelchair/walker while I enjoy my cake (although decorating those items sound kind of awesome). That fear is based off of my horrible luck with brain surgeries. Granted the most recent one healed pretty well, but man if that second brain surgery didn't give me a run for my money.

Good God, I'm in a morbid mood. Must be the fever.

That doesn't mean I don't want to live a long life - obviously I do - I just want to make baby goals, which feel sustainable.

A famous Bonnie Birthday cake. Delish!

I'm scared for this next brain surgery, and unsure if I will do it at UCLA like my previous one. If I have to endure a 4th brain surgery, I want to make it count. Originally, the back-to-back brain surgeries in 2010 were at University of Washington in Seattle, then I wanted to do the clinical trial using dendtric cell therapy for diffuse astrocytoma which was at UCLA, so I headed down there. You may remember that after the surgery, I was told my tumor didn't meet the parameters of the trial (my tumor tissue was too integrated with healthy tissue). That forced me to Germany trying to get my own dendritic cell therapy. There aren't many clinical trials for my type of tumor, or grade, so we are forced to get worse before we can hope to get better. That's the system that I'm in. It sucks. So I need to continue my search for possible brain surgeons that are offering more than just a surgery. I want try something innovative, something more. I'm not sure if I'll find anything, but I kind of want someone to put bacteria in my brain.

Okay, I still have two more phone meetings tonight and I lost my voice, so before I lose all ability to think I'd better wrap this up. I do have more exciting news, though. Danny and I are being flown down to LA next week for the premier, and a showing of My Last Days. We get to go see everyone who filmed, and meet the rest of the folks that were featured. I can't wait! I mean, I can wait because I want to be healthy. Otherwise I might have to show up in a bubble so that I don't infect anyone. I will now power down my brain for a quick quiet moment. Sending everyone love, and thank you as always for loving and supporting us!

On Our Way

**************WRITTEN 6/2/12*****************

Thank you for all of the cherry sales, and donations! Thank you Susea & Sandy for helping Dan and I find a room to stay in LA!! Thank you Big Wave Dave & Sally for letting us stay in your home!! Thank you Auntie Lynn for using your air miles for our flights!! We are completely taken care of, all we need to worry about is making the correct medical decision, and I know that very soon, we will have the information to do that.

At 4:55 pm today, Dan and I fly to California to get answers. Who knows what will happen. We will keep you posted.

Thank you for all of the support, both financially and emotionally. It's crazy to think about another brain surgery. I'm finally understanding that it's not just a brain surgery, it would be MY brain surgery. They would shave my head, put me under, saw open my skull, dig around in my tissue, screw the skull back together, staple my skin back together, and then wake me back up. It's pretty intense. And that's if they don't wake me up, it's a whole new ball game if it's another awake craniotomy. But, we don't need to worry about that quite yet. We still don't know if we're going to join into the trial. First things first we'll meet with Dr Linda Liau.

If you're in Friday Harbor for the Fourth of July, please go watch the parade for me. Best. Parade. Evah!! Seriously, it is the best in the nation.

If you're interested in reading an article about a different clinical trial given by Dr Liau, please scroll down.

Personalized vaccine doubles survival time in patients with deadly brain cancer

By Kim Irwin March 21, 2011

Dr. Linda Liau

A dendritic cell vaccine personalized for each individual based on the patient's own tumor may increase median survival time in those with a deadly form of brain cancer called glioblastoma, an early-phase study at UCLA's Jonsson Comprehensive Cancer Center has found.    

Published last week in the peer-reviewed journal Clinical Cancer Research, the study also identified a subset of patients more likely to respond to the vaccine — those with a subtype of glioblastoma known as mesenchymal, which accounts for about one-third of all cases. This is the first time in brain cancer research that a subset of patients more likely to respond to an immunotherapy has been identified, said the study's senior author, Dr. Linda Liau, a Jonsson Cancer Center researcher and a professor of neurosurgery.

The study found that the vaccine, administered after conventional surgery and radio-chemotherapy, was associated with a median survival of 31.4 months, double the 15 months of historical controls in the published literature. In all, 23 patients were enrolled in the Phase I study, which was launched in 2003. Of those, about one-third are still alive, some more than eight years after their diagnosis.

The study also found that the vaccine was safe and that side effects were minimal, limited mostly to flu-like symptoms and rashes near the vaccine injection site.

"This is quite an encouraging result, especially in an early-phase study like this," Liau said. "It's promising to see patients with this type of brain cancer experience such long survivals."

However, Liau cautioned that the findings need to be confirmed in larger, randomized studies. She currently is leading a Phase II, randomized study at UCLA testing the vaccine in newly diagnosed glioblastoma patients. The patients will receive either the standard of care (surgery, radiation and chemotherapy) or the standard of care plus the vaccine. The study is a multi-center trial, and UCLA is the only site in California.

How the vaccine works

The vaccine preparation is personalized for each individual. After the tumor is removed, Liau and her team extract the proteins, which provide the antigens for the vaccine to target. After radiation and chemotherapy, the white blood cells are taken from the patient and grown into dendritic cells, a type of white blood cell that is an antigen-presenting cell.

The vaccine preparation from this point takes about two weeks, as the dendritic cells are grown together with the patient's own tumor antigens. The tumor-pulsed dendritic cells are then injected back in to the body, prompting the T cells to go after the tumor proteins and fight the malignant cells.

"The body may have trouble fighting cancer because the immune system doesn't recognize it as a foreign invader," Liau said. "The dendritic cells activate the patient's T cells to attack the tumor, basically teaching the immune system to respond to the tumor."

The individualized vaccine is injected into the patient in three shots given every two weeks for a total of six weeks. Booster shots are given once every three months until the cancer recurs. Patients are scanned every two months to monitor for disease recurrence, Liau said.

Success with mesenchymal glioblastoma

It has recently been discovered that there are at least three subtypes of glioblastoma: proneural, proliferative and mesenchymal. During the course of her study, Liau and her colleagues saw that one group of patients seemed to be responding very well to the vaccine. The researchers examined their tumors using a microarray analysis of their DNA and found that those with a gene expression profile identifying their cancers as mesenchymal responded better to the vaccine.

The finding was surprising, Liau said, because patients with the mesenchymal subtype generally have more aggressive disease and shorter survival times than those with the other subtypes. In patients with this type of glioblastoma, several genes that modulate the immune system are dysregulated, meaning they don't work properly. Liau speculates that the vaccine helped replenish the immune system, allowing that subset of patients to more easily fight the brain cancer.

"Glioblastoma remains one of the diseases for which there is no curative therapy ... and the prognosis for patients with primary malignant brain tumors remains dismal," the study states. "Our results suggest that the mesenchymal gene expression profile may identify an immunogenic sub-group of glioblastoma that may be more responsive to immune-based therapies."

Eight years of survival

Brad Silver, 41, who grew up in Southern California and now lives in a Cleveland suburb, was diagnosed with glioblastoma in 2003 and was told that he had, at best, two months to live. He was stunned.

"I was 33 years old, and my wife was seven months pregnant with my son," said Silver, a college water polo instructor. "I didn't think I was going to live to see my son born, let alone grow up."

Silver sought a second opinion at UCLA, and the golf-ball sized tumor in his left lateral lobe was removed. He underwent radiation and chemotherapy and enrolled in the vaccine clinical trial. Today, eight years later, he remains cancer free. His son, named Brad Silver II, will celebrate his eighth birthday in April.

"If I had listened to that first doctor, I would not be here today. If not for Dr. Liau, I would not be here today," Silver said. "I'm 100 percent back to being me because of this vaccine and that clinical trial. It's almost unbelievable."

This study was funded in part by the National Institutes of Health, the Philip R. and Kenneth A. Jonsson Foundation, the Neidorf Family Foundation, STOP Cancer, the Ben & Catherine Ivy Foundation and Northwest Biotherapeutics Inc.

UCLA's Jonsson Comprehensive Cancer Center has more than 240 researchers and clinicians engaged in disease research, prevention, detection, control, treatment and education. One of the nation's largest comprehensive cancer centers, the Jonsson Center is dedicated to promoting research and translating basic science into leading-edge clinical studies. In July 2010, the center was named among the top 10 cancer centers nationwide by U.S. News & World Report, a ranking it has held for 10 of the last 11 years.

Clinical Trial?!?

A random artichoke plant along the road off Green Lake. Beautiful!

I have big news, but I have to start at the beginning.......

I've been exhausted trying to navigate supplements, treatments, etc. It has gotten so bad that I haven't been sleeping well, and I'm constantly tired. After my most recent IV treatment, Danny and I realized that if we're going to fight to get healthy, we need to exercise every avenue. And yet, we don't have unlimited funds, so we have to be smart about the treatment choices. Instead of paying for IV treatments, which are good, we need to head for the hills for something great. So.......I contacted Dr Germany's clinic in Duderstadt. I've been gathering information about the various treatments available, including dendritic cell therapy, immunotherapy, and hyperthermia - all three treatments are very effective against brain cancer, especially when used in combination. After talking with Dr M, at the clinic, Danny and I were all in - incredibly excited and hopeful. We vetted the clinic and with no ill information around, we were convinced. We even started talks with family friends about acquiring personal private loans to help cover the costs.

As you can probably read, things changed. There's nothing wrong with Dr Germany's clinic, in fact we may still end up heading there, but guess what.....this is huge.....I might be accepted into a clinical trial. Let me tell you about it.....

There is a clinical trial at UCLA for low grade gliomas using dendritic cell therapy, headed by Dr Linda Liau. I would need to get another brain surgery to harvest more tumor tissue, it's important to use the most fresh tissue available. I would not have to do radiation or chemotherapy. The only cost would be whatever my insurance would not cover from the brain surgery, MRIs, blood tests, etc. Whatever the cost, it should still be cheaper than going to Germany, and with the fresh tumor tissue the treatment would be more effective. I double checked and since this is a phase IIa clinical trial, there will be no control group, no placebo, all patients would receive treatment, a dendritic cell vaccine personally created with their own tumor tissue. This is HUGE!! I still don't know if I'll get accepted into the clinical trial, but I'm very hopeful. Instead of heading to Germany, I might be headed to LA. Either way, we're headed somewhere, whether it be Germany or LA, something is happening.

I had been reading about the clinical trials in the USA, there's one currently being conducted at Swedish, here in Seattle, but it's for glioblastomas. I knew that Dr Liau was conducting a clinical trial at UCLA for low grade gliomas, but foolishly, I had assumed that I would have to do radiation or chemotherapy first, and I assumed that there would be a control group with placebos. This is fantastic, and exciting. The only reason I contacted Dr Liau is because my friend Jessica, who is also fighting a glioma, emailed me with correspondence. I figured I might as well email the good doctor in charge. I'm always interested in getting my questions answered, and thank goodness I did. I could have missed out on an amazing opportunity. Of course, I have not been accepted into the trial yet, but I'm hopeful. And if it doesn't work out, then, well, I'll just head to Germany. I have wonderful sulforaphane pills, curcumin, and all sorts of fantastic things that on their own could cure me in their own right, but truth is, Dan and I feel like we should attack everything from all directions....because....why not?!? Let's do this. Anyone interested in another head shaving........