First Night In The New Place

Not too bad. This is my idea of camping!!

Moving Out

Sorry I'm still not back to a regular posting schedule. Last Thursday, the counseling session was fantastic, and it prepared me emotionally for the appointment later in the day with the detective. The therapist helped me put the whole attack in perspective. I cried a good deal, and was able to discuss not only the attack, but also, all of the stress involved with our landlords. Unfortunately, we have to move. It has all been pretty unexpected, but step by step, it has become more and more uncomfortable to live here. All Danny and I want is a safe and happy home where we can focus on being healthy. We are moving out tomorrow. Each step of the way, dealing with our landlords, has been painful and sad. I wish I could say everything horrible that they've done, but I feel like it would be an ugly decision for me to make. There's no need for me to drag their names through the mud. They know what they've done, and how they've acted, and I'm not going to be able to teach them a lesson about kindness, empathy, or anything else. If there's one thing that I feel certain about, it's that you can't teach anyone anything. You can only be yourself, be honest, stand up for yourself, and avoid unnecessary stress/drama whenever possible.

Speaking of stress and drama, we've got only the good kind for the next two days. My parents will be here tonight, and we'll be packing today, then tomorrow we move out and into our new home. I have another counseling session tomorrow night, and I know that it will help me continue to heal. I feel like things are getting better and better. I feel relieved to get the therapy I need, the promise of a safe home with new landlords, time to heal and gain strength so that I can focus on  preparing for the clinical trial.

I need to be strong physically, mentally and emotionally. I must feel confident, yet relaxed and ready to conquer the world if I'm going to successfully undergo another brain surgery. For now I'm happy to I have the time to get back to walking the lake, then jogging the lake, focus on eating healthy, trying new recipes, stretching my limbs with yoga, and enjoying each moment of my amazing life. I'm so lucky, and happy to be alive. Even when things are tough, I'm still grateful to be breathing. Over the past few weeks, even at the lowest point, although I was scared, I just hoped and hoped that things would just get better. I day dreamed of jogging the lake, of laughing with friends, of walking to the grocery store and enjoying the little things of my daily life. All of those hopes, all of the wishing, culminated on Saturday night at our friends Laura & Eric's wedding. Finally, Dan and I were able to laugh, dance, visit with friends, enjoy the gorgeous day, the fresh air, the beautiful faces and happiness of their family and friends. It was perfect. Weddings are so much fun, especially when they're for people you love. Over the course of Saturday night I became more and more confident that Dan and I are going to pull through any hard times. I remembered that life isn't about the big things (cancer, the attack, the landlords, etc.), it's about hugs, laughter, stories, dancing, and love.

I'm Back!

I've been writing and erasing this blog post for two days. I keep trying, but there's just so much that has happened. It's all overwhelming. There's so much to say, and yet I don't even want to think about it. On the other hand, I want to purge, to barf it all out and then maybe I'll feel better.

Thank you so much for being patient with me. The past few weeks have been a blur.

I've had an aura while shopping at Bed, Bath & Beyond and a small seizure the next day at Target while shopping for a new shower curtain and bath mat. Too bad I didn't figure out the connection until it happened twice. After that, I was home bound. I was lightheaded, dizzy, and slept 15-16 hours a day. I didn't leave the house for a week, and I was still incredibly dizzy and nauseous, but I was desperate to get to a counselor to talk about what happened. Instead of trying to get on two buses to get to the therapist, I scheduled a taxi. While I was riding in the taxi, we didn't get more than three blocks from my house, I had an aura. I desperately pleaded to the taxi driver to stop the car. He had been talking, and his accent was similar to my attacker's. I don't know if it was the stress from the moving vehicle, the light from the sunny day, the fact that I was headed to a counselor to talk about the incident, or the accent that put me over the edge. I asked the taxi driver to slowly get me home and I had to cancel the therapy session. I also rescheduled the appointment for the following day with the detective so that Dan could join me. I was afraid that I might have an aura, or a seizure, and I needed the moral and physical support of Danny. Dan knows tricks to stop an aura from turning into a seizure. He keeps ice water near me, puts the pills under my tongue, helps isolate me from bright lights, and sounds. He gently massages my scalp or temples, and gets me breathing regularly.

So, tomorrow morning, my dad and I are going to leave an hour early for a new counseling appointment. He will pull over if I'm dizzy or sick, or if I start to get vertigo (first step of an aura). We will give an hour to get 15 minutes, but I am determined to get mental help. For the first time in years, I really need professional help to get through this.

We've postponed the UCLA tests twice because we were afraid of my health situation, the stress could induce seizures. We were supposed to fly this Sunday and I would have the tests Monday, and Tuesday with a brain surgery on Thursday, but I am in no state for a brain surgery, let alone travel. We spoke via email with my fabulous neurosurgeon, Dr Liau, and told her everything. She agreed that it would be best to put off the trial until I'm back on my feet, when I'm emotionally, physically, and mentally healthy. At this point, we are expecting to continue the testing and brain surgery sometime in the middle of October. We feel that this will give me the time to get back to walking, then running, to leave the house and make it to the grocery store with company then finally on my own. I have not left the house alone since my first aura. I have not made it to a store since the seizure over a week ago. I just walked the lake with Danny for the first time two days ago. I am taking baby steps, and I'm still dealing with an incredible amount of stress due to the ongoing criminal investigation (not to mention our landlords who are friends with the maintenance man...things have been ugly).

I appreciate all of your support, so does Danny - and of course, my whole family. I will get through this, just like all of the other little things that I've conquered in the past. No one will keep me down. I have more health issues than most, but I know how to slowly work back into a normal state. In no time, I will be independent (able to leave the home alone), healthy, and happy again.

After my therapy appointment tomorrow morning, the sexual crimes detective is coming by for my statement. Tomorrow will be a HUGE day. More than once I have wished that I didn't have to report this crime, that I could just fall into a bottle of wine and never discuss what happened ever again. But I know that if I remain silent, this pervert will attack another woman in her home. And maybe next time it'll be worse. I never would have expected this man to hurt me in any way, and that, in my opinion, is the worst kind of offender. They make you feel safe, then once they gain your trust......

I've sobbed a bunch, and have been so confused, but I know that will survive this. This trusting island girl needs to recognize that there are very bad people out there, and sometimes your flags don't turn red. It makes me sad.

After such a serious post, I'd like to share a fun text message that made me laugh...

Message from Dan

Hello everyone, this is Dan

Since Jess was attacked on Tuesday, she has been dealing with a incredible amount of stress inducing situations. She has been dealing with; getting our locks changed, working with police officers and detectives on the pending criminal case of her attacker, scheduling her recently approved tests with UCLA to possibly start her clinical trial, scheduling her travel itinerary to UCLA, all the while going through the process of dealing with her attack.

Due to all this stress Jess had an aura on Thursday, followed by another on Friday. The two Auras happened while shopping for replacement items for the bathroom in an attempt to change the decor. All this has lead to me declaring a technological lock down and putting Jess on 'restriction'. She will not be allowed to blog, text or email until her level of stress has sufficiently decreased. Please do not take her lack of correspondence personally, it is a necessary action to preserve her health.

Jessica is extremely worn down and needs to let her body rejuvenate itself. I will be postponing her appointments at UCLA for one week. Hopefully this will give her enough time to start healing and speak to the detective handling the criminal case of her attacker on Friday.

Thank you for all of your support and sympathy for Jess, she will be back soon. Probably sooner then I wish.

Attack

Yesterday I was attacked in my shower by my maintenance man. I am terrified. The police are involved. I might not blog for a bit. Thank you for understanding.

One Step Back, Three Steps Forward

*******This blog was written earlier this morning**********

I can't seem to figure out if Jesus cat lives in this house, or if Cali Jesus lives there.

So, I put a little poll on the blog for you to put your two cents in about my next treatment choice. I'm nervous about doing another brain surgery, but it provides the freshest tissue available which allows for the most effective vaccine. The trick with brain tumors, especially mine, is that they tend to morph. They change even within grades, constantly evolving. Brain surgeries have advanced so much, and they are relatively safe. Just typing that seems crazy, but when I went in for my original surgery they told me that there was only a 10% chance of having any complications. Of course, always wanting to be the exception, I fell into that group. You might remember within hours of my tumor resection that my dura mater pulled from my skull and a large blood clot formed in my tumor cavity. Luckily, my father who was with me in the ICU noticed that I was getting progressively incoherent. He started pushing the nurses to get the doctors, and at one point even started yelling at them when they argued. When my neurosurgeon arrived, he kicked everything into high gear, they were running me into surgery, it was very serious. It was life threatening. As my mom reminded me this morning, I almost died.

To be in the position to have to decide on brain surgery is incredibly difficult. Do I avoid it because of the possible risk? Do I opt out of the most effective western treatment because I'm afraid? I'm equally scared of doing the surgery as I am about missing out on the benefits of the treament. In my soul, I feel like I need to do everything in my power to heal my body, and sometimes that means taking one step back (surgery) and three steps forward (shots of the personalized vaccine).

I'm grateful that I'll be getting the Dopa PET scan to verify that the tissue in question is or isn't tumor. That's the first step which allows me time to make my final decision. Who knows, maybe we'll find that I've done enough with my supplements to shrink Hermie.

The trick is that, if Herman has morphed at all, the German dendritic cell therapy will not be effective. We need the most recent pathology to target my exact tumor as it is in this point in time. It is pretty much a guarantee that my tumor has changed over the past two years. Especially with all of the different supplements that I've used. Each time you attack a tumor, it tries to morph to avoid death.

In essence, I could try the German therapy, and add that to my supplements - which is exactly what I had been planning on doing. But, then, I contacted Dr Liau and found out that I could do the dendritic cell therapy here at UCLA. I've never been much of a quitter and in my gut I truly feel like I need to do this brain surgery and get the best vaccine. I can add that to my supplements. I do not want to die, obviously, but sometimes you have to risk your life to have life. I want to get better. I want to have Danny's beautiful little babies. I want to heal myself. I want to show others that we can beat this!

A few different friends have asked if we could do a biopsy instead of a full on surgery, but unfortunately, that's not how it works. The more tumor tissue you have, the more potent the vaccines are. The way this works is that they remove all of the tumor, then they divide the tissue into three equal shots. If you only have a little bit of tissue you might only get one shot (if there isn't enough to divide). You actually want more tumor in this situation - crazy and counterintuitive. It's opposite from everything we've been working toward, but hey, it's how it works.

Although I'm scared, I refuse to let fear dictate my life. I do not want to take a hundred different pills a day, remain shackled to a refrigerator since I need to take milk with most of them, and live tethered to my house. It makes it hard to go for a run, or a walk, or go hang out with friends - it's tricky to even get to the gym. I only have so much time between pills. It's not realistic, and it's not a fun way to live my life. It makes me depressed. I know that the supplements alone are not going to be enough, it will take too long and I won't be able to stay up on them. I need to amp it up or I worry I'll lose the drive to fight.

We're Back!

Sorry it's taken so long to post. We're finally back home, and semi-settled. We're still waiting for UCLA to schedule the Dopa PET scan, and Functional MRI - apparently, my insurance is baulking. Eventually, I'm sure it will all work out, but in the meantime I'm excited to be home. I missed Bingie our cat (Emma's with Grandma Linda). 

I'm excited about the possibility of the vaccine, and hopeful for the future. My pill schedule had increased to 100 pills a day - that's too many! It has been exhausting, and very limiting.

I'm so exhausted that my brain feels slow.

The view from our home away from home, Dave & Sally's in Manhattan Beach

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Appointment With Dr Liau

The appointment with Dr Liau was AWESOME. She had reviewed all of my scans, and wasn't sure if I even had any tumor tissue. She said that before she would cut me open, she would need for me to have a Dopa PET scan. It's the scan that we've been wanting, but my doctors at UW would not authorize. It's a special scan that's used for low grade tumors. The scan would differentiate between tumor cells and scar tissue.

If the results from the scan show that the tissue in question IS tumor, she is very confident that she can remove it. She would have me do a functional MRI to verify the location of the tumor against healthy tissue. A fMRI is a typical MRI except for the fact that they ask you a bunch of questions, watching the areas that light up. Then they will stick little needles in different muscle groups and watch again for the different areas of the brain that light up. My tumor is in my language and sensory location. All in all she seemed very happy with my current situation, that I seem perfectly healthy, and the area in question seems to mostly be growing out in the tumor cavity which is great! It's better if it grows into the void as apposed to into healthy tissue.

Dr Liau thinks she could remove all the tumor (if that's what it is). I would not need to do another awake surgery, unless something comes up on the fMRI (if my speech or movement areas aren't where other peoples are). I would not need to shave my whole head, she would just shave along the original incision on either side. Sounds do-able!

The meeting happened so fast, it seemed, although she answered every single question. I'm so excited, and I literally adore Dr Liau. I can't go back to UW. I'm a convert. It's going to be tricky to visit Liau for all of our MRIs and appointments, but heck, she is LEGIT. She was on board that I should not do radiation (at this point). She scheduled the proper test, Dopa PET. She is kind, and exceedingly intelligent. She's the best oncologist I've ever met.

Now I need to go, I have an appointment with an acupuncturist. I'm very excited!!

I can't believe how different Dr Liau is compared with my other oncologists at UW. My oncologists at the UW have been pressuring me for radiation since October, and they keep telling me how much the tumor has been growing, constantly freaking me out. Dr Liau was quite the opposite. And, if it does turn out to be tumor, after reviewing the Dopa PET, Dr Liau was very confident that we could remove that tissue, and use it for the personalized vaccine.

This just reiterates to me the necessity of choosing the right doctor. Thank you for all of the support along the way, this journey just keeps getting better and better!

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.

New Friend

While waiting for Dr Liau we met a new friend. Kelly is fighting a glioblastoma, and has been fighting it for the past two years. She is a total warrior!!

Appointment went great! Will update later. No surgery this week :) We should have the appointment scheduled by the end of the day. So much to report, but the WiFi at the hospital is horrible.

Dr Linda Liau is a complete rockstar.