New Drink

This drink is so good that Danny actually craves it. That says a lot.

1 banana
2 large handfuls of spinach
2 large kale leaves (deveined)
7 sprigs of mint (deveined)
1 cup L&A pineapple and coconut juice
1/2 cup of cold water
*add ice to thicken if you'd like

The drink is 352 calories
(the entire blender) and it can serve two, or a starving person, or save it in the fridge and blend it again when you're ready to serve.

You can't even taste the greens, it's amazing! It's important, if you can't get L&A you can pick any pure fruit juice - no sweeteners of any kind, natural or not.

Enjoy!! :)

First Solo Run

I just finished my first jog around green lake! Four miles round trip. Score! Now I don't have to be afraid of having a seizure while I go out. I just needed to set a precedence. Of course, now I don't have the excuse of not exercising :) It took a month and a half to get back to running alone, but who cares, I'm back!! That loop was a huge success, and I made it through by thinking of all of you supporting me. Then, through the dusk, my face tickled by mosquitos, I sprinted out the final half mile in Ethan's honor. It was powerful.

Creating Ripples

“Remember there's no such thing as a small act of kindness. Every act creates a ripple with no logical end.” -Scott Adams

I'm feeling much better. It happened just after I hit, "Post" last Friday. Somehow, I don't completely understand it and I should never forget, blogging purges me of my pent up emotions. Yes, death is scary, but I don't normally dwell on mine. It's too morbid, too dreary, too negative, and counterproductive to my happiness (or anyone's really). All I want in life is to enjoy the good things, to fill my soul with happiness. And on that note, I'm going to take Emma on a walk in the sunshine. 

Hopefully I don't sound flippant, but if that's the case, I guess that's just how things go sometimes. The emotions ebb and flow.

Between A Hard Place & A Hard Place

Hi Friends. I am sorry that I haven't written in a bit. I've been depressed. I've been trying to get my butt in gear here and there, but for the most part I haven't had the energy to do much. I've been pretty shaken up by Ethan's death, then Kathi Goertzen's death which was technically due to pneumonia but was truly a complication from her brain tumor. A few days after that I heard that Tony Scott the famous director killed himself allegedly because he was diagnosed with inoperable brain cancer. When I heard that he jumped to his death I thought to myself, "Does he know something I don't know? How bad will this get? Will I regret this journey?" The concept of death has been swirling around me. It's in the air in each room slowly suffocating me. Each time it nudges me, I turn my head and try to ignore what it whispers in my ear, but just trying to ignore Death's comments have zapped me of all energy.

The worst part about the whole thing is that I'm incredibly healthy (other than Hermie obviously). I have EVERYTHING going for me. I have a fabulous life with a wonderful man whom I adore. I have a safe home. I have wonderful friends and a great family. I get it. Conceptually, I understand my great fortune. But, sometimes, I get torn between fear of the monster in my brain, about the projected future of my disease and denial. I can't seem to live in just one life (fear) or the other (denial). Instead I oscillate, fighting, fulling knowing that I if I don't accept the truth of my situation (whatever that means) I'll crumble. And that makes me frustrated. Life is too short to fall apart, and I hate that I'm in this predicament - not the tumor part, but the fact that I can't seem to come to peace with it these days. There's no point in being upset that I have brain cancer, I can't wish it away - but I can try and heal myself with healthy eating, exercise, supplements, and perhaps the clinical trial. But when I'm depressed, I don't feel like taking my pills. I don't feel like leaving the house. I don't feel like dealing with anything. I don't want to talk, or write, or socialize. And that's not me. I hate it when I'm not me. But I don't know how to fix it. People have mentioned anti-depressants, and I appreciate the suggestion, but anti-depressants have been linked to gliomas (they're not sure if it's correlation or causation) and that terrifies me. I feel anti-depressants aren't an option.

Ferry ride to FH

Share The Love

Just this afternoon, I found out that a high school friend passed away over the weekend. A week ago, Ethan sent me a message letting me know that he read the blog from time to time and that he felt inspired by what I write, and what I'm going through. I was shocked by the message, and incredibly moved. I have felt so vulnerable, and to get his love and support helped empower me. Please remember that in just a few sentences, a few words, a little message or note, you can completely change someone's future. I'm not saying this for my sake. I'm not asking for people to send me messages. I'm sharing this story with you so that Ethan's love can be spread to others. Please take a moment to remember how quickly life can change. Please decide to say the things that you've been meaning to say. A small kindness, that takes only a few moments, can ultimately change the direction of another person's life. Words are powerful.

Wes & Ethan Edholm

I learned that we lost Ethan this afternoon, and this evening I learned that we lost Kathi Goertzen, the local anchor woman. She had been battling brain tumors for the past 14 years. Today is a crisp reminder to cherish each moment, each friend, each love, each family member, the cool breeze, the scent of summer air, each bumblebee and gorgeous green leaf. Please take a moment to read this, then close your eyes and take a deep a breath - slowly inhaling as much as you can. Savor the smells around you, they might be sweet, of fresh air, or the pungent scent of a stagnant dinner. Either way, you're alive; remember that you're lucky. Don't miss the opportunity to relish each moment, life goes by so quickly. Instead of having regrets, share the love in your heart. You will be glad that you did.

On The Up & Up

Things are getting better, I just have to get out of my head. I'm not sure if that makes sense. The seizure issue, for me personally, is a mind game. I can easily work myself up into a very fearful state, or I can calmly remind myself that I'm doing fine, that I'm just overheated, maybe it's very sunny, that my heart rate is up because of the conditions, not because I'm about to have a seizure.

I'm getting to the point where I feel "normal" and much more strong physically, and mentally. I still have fear, but Dan and I have been working on pushing my limits. I went for a walk with my friend Lauren the other day, Dan and I made it to PCC and Home Depot (both driving), and Dan and I have even gone running a couple of times. It might sound silly, but each time I'm out of the house is a major success. I'm excited to try and get out of the house on my own. I bet the first time I do anything will be a run around the neighborhood. So far, running has been my rock. It removes anxiety, gives me strength physically, and emotionally. It puts me back to my roots, grounds me, and empowers me. The florescent lights of the real world, the sirens and traffic, all give me (and probably a lot of people) anxiety, but when I'm out breathing fresh air, eying the various plants, birds, random pets, and vibrant people out there, I always end up smiling and feeling human, alive, happy, and grateful. I should clarify, normally, when I don't have seizure activity I am absolutely fine with sounds, bright lights, hectic situations or life in general, but when I'm on overload I have to be really careful.

Thank you for your patience as I've been horrible about emailing people back, and posting on the blog. I've definitely had a lot on my mind, not just with the attack, the landlords, and seizure stuff, I'm also incredibly nervous about the future brain surgery. The first brain surgery was not an option so I felt like I could just accept my fate, and release all (or most) of my fear. This time, this brain surgery, is optional. That is intense! What if something goes horribly wrong? It would be my fault for subjecting myself. Dan emailed Dr. Liau to see if she would prefer that I get on anti-seizure medicine for the surgery. I hated taking it last year, but if it will eliminate a complication, I will do it. I will do anything in my power to eliminate all complications. I want to get in tip-top shape, create a cancer fighting, surgery healing machine. My goal is to be running 3-4 days a week, weight lifting 2-3 days a week, and doing yoga 2-3 times a week for at least a month before surgery. It might sound excessive, but I'm not as intense in the workouts as you might imagine :) It's mostly a stress reliever, and the more you work out the more fun food you can eat :)

I've added delicious food to our diet, lots of legumes, whole grains and of course the usual veggies and lean meats. The difference, is that I'm playing around with new recipes. Tomorrow night I'm making a spinach burrito. It includes sauteed spinach, onion, and bell pepper then of course, a mix between black and pinto beans (seasoned with hot sauce), then long grain black rice (seasoned with cumin & a little turmeric), with chopped green onions, chopped romaine lettuce, and shredded sheep cheese - you wrap it all up in a whole grain tortilla and it's DELICIOUS. And it's much more fun than the typical salad and steamed/grilled veggies that I usually make us. With all of the stress in our lives right now, I'm enjoying the relaxation of food rules. Life, literally, is too short to get crazy about maximizing the nutrient content. Keeping everything in the whole foods, or whole ingredient, category is good enough for me these days. So what if a whole grain tortilla is technically processed. I'm over it. It's still whole grain (of course, you still have to read the ingredients to make sure there's nothing funky), sprouted spelt tortillas are my fav. Some may disagree, but I do believe that there are some processed foods that aren't that bad for you.

Photo of the day taken last Friday...I have a new buddy, and I keep feeding him which is strengthening our bond....

Attack Followout

I've been depressed and I'm embarrassed to talk about it. In fact, I've been avoiding the topic, hoping it would just get better - but it isn't getting better. In fact it's getting worse. It's not like every moment of every day is horrible, but I feel trapped. I've become agoraphobic due to the auras and seizure. I'm afraid of getting too hot, becoming too stressed, getting stuck where it's too bright, too noisy, too many people, too intense of questions, of hearing a Romanian accent, the speed of moving vehicles, the list goes on. I know I sound ridiculous, and I'm disgusted with myself, but I'm just completely overwhelmed. I worked my way up to Eric and Laura's wedding, resting the week before, mentally preparing myself. I really, really wanted to go the wedding, and I was nervous, but I made it. Originally, I felt like it might be too much, and I asked Danny to go without me, but he refused. He didn't want to leave me. So, I pushed through to make sure I could make it. I didn't want to be the reason why Dan wasn't able to attend his best friend's wedding. Everything worked out fine, we had a WONDERFUL time, but now, getting back to life with the move and everything, it's tough. 

It's incredibly hard to understand the waves of dizziness, of the overheating and physical dynamics that happen when my body is stressed. It can come in an instant, when you're least expecting.

I'm terrified to leave the house. I've tried getting to the store, or for a walk or two - always with Dan, but I feel unsafe getting very far away from our home. We've had to cut our outings short, or the fear overcomes me as we're just leaving and I stay home while Dan runs errands. I wish I could explain how it feels. It's a combination of getting nauseous, feeling like your body is melting from the inside out, internally combusting. Imagine a wax figure melting down, that's how my body physically feels when I'm having an aura or seizure, or that I'm a robot that has been sprayed with water, that I'm short circuiting. 

I'm working all of these issues with my therapist, and I actually have homework - I'm supposed to get out of the house every day. There's different specific tasks, but it's too much. Even before this attack I still didn't leave the house every single day, I was too tired. The homework alone from counseling is more exhausting that I normally have to deal with. 

I feel trapped, fearful, exhausted, scared, distrustful of my body, and incredibly sad. If you've never had a seizure or an aura, I don't know how to explain it accurately. It's horrible.

At this point, I only leave the house with Dan or someone from my family. I'm afraid to try and get out and then have a seizure out on a random street as I walk. I'm terrified to not be able to call for help. I'm terrified to push it and make things worse. I had no idea that this attack would hurt me so badly, that it could effect me this much. That it would immobilize me, imprison me, and completely ruin my quality of life.

Theoretically, I know I will get better, but my soul and my heart are hurting. Sometimes, this journey is harder than I expect. 

Thank you for the birthday wishes yesterday. I am officially 32. All day I thought about when Dan turned 32. A month later, I was diagnosed with my tumor. Poor guy. He didn't exactly have the best 32nd year. Although mine is getting off to a rocky start, I'm hoping it will just get better and better. 

It was a beautiful day, and I was able to fill it with wonderfully happy things like weeding in our little garden, painting a little mirror, unpacking the bedroom, doing laundry, painting a wall, visiting with Meghan, and watching the Olympics. I did more in a day than I would usually do in a week. It was fabulous, but I'm worn down. Perhaps that's why I feel so sad. That, or the fact that I'm dealing with quite a bit. Hard to say. 

Birthday flowers from Meghan

New Neighbor

My new neighbor! See if you can find him. I thought it was someone's lost exotic bird chirping outside our window this morning, but when I glanced off the balcony I saw the culprit. An adorable little fellow who was probably looking for a furry tail to chase. I'm going to drive Danny crazy, but I think I'll need to add a couple of new feeders to our mix :) Life's not just about the birds anymore.

We're pooped - Danny much more than me. He has been working the swing shift this week. Since we've been dealing with our old landlords, packing, moving, counseling appointments, and of course switching our address & utilities with various companies (all the medical, etc.). Danny got five hours of sleep today, the day before was 2.5 hours, and the day before that it was 1.5. I think he might be more stubborn than me! I keep trying to force him into naps, but he's a big guy. I can't even tackle him, he just keeps walking, laughing all the while. Luckily, he's sleeping right now, and hopefully when he wakes up for work he'll be rested. I feel guilty though, I head to sleep while he's headed to work. I can't sleep well, I worry like my mother (sorry mom) that he might get hurt, perhaps get too sleepy to safely drive home. Soon things will settle down, and I'm excited for that point. We both yearn for a regular schedule, with great sleep, healthy home cooked food (it took awhile for us to find silverware and other necessities), weight training, runs around the lake, and most of all a cozy, stable home where we feel safe. We're getting there, little by little, and it's a great feeling! Life goes in waves, and lately we've been in the base of the trough. Now, we're headed up and things are looking bright, it's a fabulous feeling!!

On another note....THANK YOU!!!! To my Auntie Lynn, my mom & dad, Dan's brother Eric, and our family friend Larkin's buddy Justin. You all helped us move so quickly, keeping things seamless and on track. I can't imagine how horrible the move would have been without your help. THANK YOU, from the bottom of our hearts!

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

.

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.

To Knife or Not To Knife

Yesterday, I walked a couple of loops around Green Lake with my friend Lauren. On the way to meet her (she lives in Green Lake like me so we meet half way), I saw this gorgeous dahlia. I mean, I think it's a dahlia. It was misting, and every plant had mother nature's glitter. It was a beautiful morning, a great day to be alive, to be healthy, to be able to walk and explore and laugh and talk. The possibility of another brain surgery reminds me of all the trials I worked through before. The first two brain surgeries were incredibly hard on me, and the recovery for months and months and months were horribly trying. But, I got through it. At times I didn't know if I'd get better. I didn't know if I would ever get my speech back together, find the words that I wanted to communicate with, my phonetics and word finding were in pieces. I didn't know if I would ever read again, or once I was able to slowly read aloud, like a child just beginning, I didn't know if I would ever be able to understand those words.

Any fears I might have about undergoing another brain surgery are definitely founded, but it still shouldn't hinder me from moving forward with a successful treatment. I used this analogy with a friend yesterday when she was picking up her cherries (thank you!), I want to hit Herman with a firing range. I want an arsenal to beat this tumor, hit him from all angles, give him no reprieve. Technically, according to the research, it's possible to cure my type of tumor in rats with various high dose supplements, and of course, our friends have already stopped theirs. But, I haven't been able to ingest the amounts that are necessary for killing doses like my friends did. We think that we're winning the fight, that the smaller amounts that I take might be holding Hermie at bay, or perhaps even reversing some of his growth, but the MRIs have not been definitive. In fact, my oncologists, and the radiologists, believe that Herman has continued to grow progressively. In order for me to be comfortable, I need to see more serious results.

At this point I take 29 pills in the morning, 24 pills in the afternoon, 48 pills in the early evening, 8 pills shortly after that, and finally before bed I take 6 pills. Most of them must be taken with whole milk so I'm tethered to a refrigerator. It's exhausting to keep up on the schedule, and I'm sick from swallowing all the pills - not to mention the fact that I feel like a cow. Literally. I find that on most days I don't even leave the house. The supplements may take years to heal me, and I need to keep on them in order to stay in front of Hermie's growth, to hold him back. It's a lot of work. If I go through with this clinical trial I might be able to aide my immune system to fight Hermie on my own. My body might be able to clean up the tumor, and heal itself. I could still take the majority of supplements, or all of them if I so chose, as my immune system also went to work. It would be an arsenal against Mr Herm. What's better than that?!?!

I'm scared to do another brain surgery, I think I've made that blatantly clear, yet I'm excited for the possibility of a personalized tumor vaccine. The freshest tumor has the best chance for success, so the surgery truly is necessary to be the most effective. Bad things can happen during surgery, I'm proof of that, and I'm actually very fortunate because I recovered from most of the ill effects of my brain surgeries. Some are not as lucky. But, this treatment could also heal me. It's a gamble, and we won't know if I'm a winner unless I go through with it and see what happens.

Thank You!

My parents swung by our place at Green Lake a few hours ago, and they were beaming! They were blown away by the generosity. People not only bought cherries, but also donated. Above the money that they raised in West Seattle, they were moved deeply by all of the hugs and kisses they were given. If you haven't met my parents, they're incredibly loving and affectionate. I grew up with hugs and kisses all the time, especially before bed. My parents are loving and kind, ridiculous and funny, thoughtful and generous. I appreciate everyone giving them so much love and for making this fundraiser such a wonderful success! So thank you everyone, not only for purchasing cherries or for the donations, but also for giving them so much love!! Since I'm just their child at the epicenter of the cancer without of the privilege of understanding what it means to be a parent, I can not imagine what they're going through. So, thank you! Thank you so much!! We had no idea how much love we would be given, it's been a beautiful example of love and human kindness. Thank you!

To thank you for buying cherries and donating, AND for hugging my parents and giving them kiss after kiss, I am drinking two pints of my disgusting sprout drink. I figure that, if you guys can support me emotionally and financially, I can give all of my energy to my health, even when it's incredibly tough.

Truthfully, I wish you could smell how horrible this drink is, it's created from benzyl and phenyl sprouts. Misery loves company!



Cherry Changes

EEEK. Ok, problems with weather (rain) in Wenatchee has changed the game on us. Here's what we're looking at...we now have two different types of cherries. We will have organic rainier cherries and non-organic bing cherries. As you might expect, there are two different prices. The organic rainier cherries are $9.00 for a 1.25 lb bag. The non-organic bing cherries are $7.00 per 1.5 lb bag.

To put it bluntly:

Organic Rainier Cherries
$9.00 per 1.25 lb bag

Non-organic Bing Cherries
$7.00 per 1.5 lb bag

I'm so sorry for the changes!

I'm Headed to UCLA!

Yesterday my medical files were sent to UCLA (at least the writen ones - the MRI scans are somwhere between Seattle and LA on a USPS truck I imagine), and this morning I missed a call from Dr Linda Liau's office. I thought they were calling because I had yet to pay the $500 to get my records reviewed for the low grade glioma clinical trial with dendritic cell therapy, but when I finally got ahold of the department it turns out they were wanting to schedule an appointment for first thing Tuesday morning. Em, like THIS Tuesday, July 2nd. Dr Liau only holds office appointments on one day a week, so an appointment at 8:00 am this Tuesday is the soonest appointment available. Since I'm traveling from out of state, I asked for a later appointment, and was able to push it back 'til 10:00 am. The stress alone from traveling is going to be tremendous, and I haven't been sleeping well anyway - I need to rest whenever I can. Also, interestingly, they told me that they wanted to schedule me in for immediate brain surgery for either Wednesday or Thursday. I started giggling and said, "Oh my god, I'm panicking. I'm not ready!!" The nice girl responded, "Oh, no problem, no pressure! For out of town, or out of state patients, we try and schedule surgeries immediately so that they don't have to endure any extra expense or stress. But, just so you know this isn't a rush."

So, on Tuesday at 10:00 am I will sitting in Dr Linda Liau's office at UCLA, in the neurosurgery department. We will discuss the various details of the clinical trial and Danny and I will review the risks and benefits of another brain surgery.

The idea of getting dendritic cell therapy here in the United States with fresh brain tumor and no forced radiation or chemotherapy is very exciting. The surgery is scary, but I will not make my decision until I know what I'm really looking at. I need to make sure that they would review a new MRI scan to make sure that my supplements haven't shrunk Hermie. Would the brain surgery be another awake crainiotomy? An awake is preferable since my tumor is so integrated. It's creepy to be awake while they're digging around in your brain, figuring out which is tumor and which is healthy brain tissue, but theoretically, it is supposed to ensure that they won't take very much (if any - which is impossible) of the good stuff. It's a pretty big deal. If they fail they can leave me severely impared. For the surgery, would they use the same incision location? What are the possible complications? Once the surgery has completed, how many dendritic cells are in each shot? They tend to do 1 million, 5 million or 10 million according to the other clinical trials by Dr. Liau, and I want the most dendritic cells possible. How many shots and over how long of a time period would I be recieving shots? What have been the results from Dr Liau's other clinical trials, including phase I of my possible trial? When they do the brain surgery, do they debulk the entire tumor or do they only take out what they need to create the vaccine? Would I have to shave my head again? How do they handle seizures if they occur during surgery?

I'm sure Dan and I will come up with a few other questions. If you think of any, please let me know. We can't have too much information when dealing with such a serious decision.

The wonderful thing about flying down to LA is that it keeps our options open. Just because we meet with Dr. Liau does not mean that we have to enter into the clinical trial.

If I do choose to participate in the clinical trial, I will have to cover the cost of travel, the brain surgery, hospital stay, tests, MRIs, blood work, perscriptions, etc. My insurance covers a portion of those costs (obviously not travel or any possible neccessary lodging), and yes, those costs are significant, BUT the dendritic cell therapy, which is the personalized vaccine to fight my specific brain tumor, is free!! Pretty cool!! This is a therapy that Danny and I were considering in Germany. We go back and forth, constantly balancing over the tightrope of, "Shall we spend the money on the treatment? It's incredibly expensive, but it does have great success..." If we can get the dendritic cell therapy for free, just paying for the standard care at the hospital, it will still be cheaper than going to Germany.

Now, all Danny and I need to do is figure out if the risk of another brain surgery is worth the benefit of the personal vaccine. The answer to that question is going to be revealed in time, once we have more information.

It's a great oportunity, regardless of whether or not we end up in the trial. It's just nice to have the door open, the option to be treated if I so choose. I feel nervous, yet empowered.

North Seattle Cherry Sales

Thank you Kelly for the awesome idea! New plan...after my parents finish selling cherries at Emma Schmitz Memorial Overlook Park in West Seattle from 11:00 am - 1:00 pm, they will drop off any pre-sold bags to my house in Green Lake for our North Seattle friends. You can pick them up Thursday evening (actually, any time after 3:00 pm), or anytime Friday throughout the day or evening. The cherries are $4.66/lb and the bags are 1.5 lbs each but we rounded up the penny for a final price of $7.00. So, if you're interested, please email me jessoldwyn@hotmail.com and we can set up a time for you to pick up the goodies whenever you're available.

Otherwise, if you're up in the San Juan Islands, you can pick up cherries in front of the Roche Harbor Grocery Store on Friday or Saturday from 11:00 am - 4:00 pm.

On another note, the photo below, and all of the other cherry shots on the blog have been "borrowed" from the internet. Our cherries are just now starting to be picked. Talk about fresh! :)

Organic Bing Cherry Fundraiser

Hi friends! This is awkward. I feel weird even talking about this fundraiser, and yet I'm incredibly grateful for it. It's tricky. I'm uncomfortable talking about money, then it's double-y awkward discussing a fundraiser to help me pay for my medical treatments. The silver lining is that I'm not asking for your money. Actually, that's not true - I AM asking for your money, technically, but you get something in return! You get delicious fresh organic bing cherries at an incredibly low price. So there you go, if you love cherries like I do, it's a win-win situation. Unless you eat too many at once...

This Thursday, June 28th, from 11:00-1:00 pm my parents will be selling organic bing cherries at Emma Schmitz Memorial Overlook (also known as Mee-Kwa-Mooks Park) in West Seattle. Just look for the maroon dodge truck with the maroon trailer. You will probably notice the large ORGANIC sign (Thank you Oehlerich family at the Copy Shop in Ellensbug!). After that, they're headed to Friday Harbor. On Friday and Saturday they will be selling right in front of the Roche Harbor Grocery Store from 11:00-4:00 pm. The organic cherries are priced at $4.66/lb and they're packaged in 1.5 lb bags for $7.00 apiece.


Thursday
West Seattle
11:00 am - 1:00 pm
Emma Schmitz Memorial Overlook (Mee-Kwa-Mooks Park)
4503 Beach Dr Sw, Seattle, WA 98116


Click on the map for directions





Friday & Saturday

Roche Harbor

11:00 am - 4:00 pm

In front of Roche Harbor Grocery Store

(Just added the map for giggles...you islanders know where to go!)

The plan is to sell as many cherries as soon as possible. Way to state the obivious Jess, jeez. Anyway, if for some crazy reason we sell out we will close shop. Yep. I did it again. Obvious. Sorry, I'm just being awkward.

Thank you to anyone, in advance, for buying delicious cherries or for letting us set up shop. You are literally helping me stay alive and healthy. Both Danny and I, and of course my family, really appreciate it! I can not say enough how grateful I am.

Also, a massive thank you to Debbie Sandwith for letting us post up in front of the Roche Harbor Grocery Store this weekend!! Aaaaand, thank you to my buddy Libbey who connected us with the produce manager at Kings Market & Market Place for purchasing some fresh juicy organic bing cherries. So, whether you purchase your cherries out at Roche Harbor, or in town at Kings Market or Market Place you can feel great while satisfying your sweet tooth knowing that you've helped us tremendously.

Hood Canal

I'm so happy to be alive. Literally. I think about it all the time, several times a day. Life is so much fun, there's so much to do and experience. This weekend, Dan and I headed to our buddy Burke's cabin to do some clam digging, oyster shucking and mussel grilling. It was amazing! I'm so fortunate to do so many wonderful things. I might be fighting a serious cancer, but I'm also just a girl that wants to hang with her friends, BBQ seafood, play with her dog, and laugh hysterically. It rained a bit, then the sun came out. It was gorgeous. That's the thing about the northwest, the weather shifts often, and it's all beautiful. I love it here. 

On another note, my parents have been struggling to find a way to help me. Of course, I had no idea how terrified they are, or how helpless they sometimes feel. They're incredibly good at hiding their feelings, sheltering me from the worry. So, anyway, they got to thinking, and they figured that the biggest stressor in my life is money. I'm constantly having to avoid expensive treatments (like extra IVs), and I'm always weighing treatment options by cost. To try and alleviate the stress in my life, my parents are doing a fundraiser. They have purchased a truckload of organic cherries and they're going to be selling them in West Seattle this Thursday morning (the 28th), and then they're headed to the Green Lake area in the afternoon. Next, they'll be headed to Friday Harbor for the weekend.

I don't have all of the information, in fact, I don't even know what type of organic cherries they're selling, but I'll get all of the information and create a post soon. One thing that I DO know is that they're selling them for $4.99 a pound which is much cheaper than PCC (they sell them for $6.99/lb). It's a great deal, and it would be helping me fund my medical bills - including possible dendritic cell therapy - if we raise the money, I would have no reason not to get this amazing treatment. Anyway, just wanted to throw the basics out there. I'll put more information again soon. Hope you all had a wonderful weekend!

One more thing...how amazing are my parents? Pretty flipping amazing.

Green Lake Gump

Great news. It looks like my oncologist's nurse is going to send over the necessary medical records to UCLA next week for application into the clinical trial. Wooo hoo! Somehow I feel like I'll need to follow up on that, but that's fine. As long as it gets done.

On another note, I would like to share an amazing herb that fights malignant gliomas (and ulcerative colitis, inflammatory bowel disease, asthma, arthritic, crohn's disease, breast cancer, and leukemia). I probably sound like a crazy advertisement, but I love sharing things that help! It's incredibly exciting because it's non-toxic, even in crazy high doses like 1,000 mg/kg. I've even found a study where rats were implanted with gliomas, then they fed them the boswellic acid at 120 mg/kg three times a day at eight hour increments. By day 14 the glioma had shrunk by 60%. SERIOUSLY. This boswellic acid lowers inflammation which is the environment that cancers thrive in. It's amazing! I'm very hopeful that I can get the same results. Here are a few links for my brain tumor fighters...

Boswellic acids and malignant glioma: induction of apoptosis but no modulation of drug sensitivity.

Boswellic acids inhibit glioma growth: a new treatment option?





The best part about the whole thing is that the company that makes the best quality is just a mile and a half from my house. I just jogged over there to pick up another bottle. AWESOME. This little Green Lake Gump runs all over her neighborhood to literally run her errands. It's so much fun. Choosing to avoid driving (by now it's legal for me to drive again after my seizure) has forced me to get out, get sweaty, get stinky, and gain perspective. I feel empowered.

Keeping The Door Open

I've been researching, trying to decide whether or not I want to pursue this clinical trial. Can I handle another brain surgery? Danny would kill me if he knew I told, but tears started running down his face at the idea. He remembers how much pain I was in, and it took months and months for it to subside. I had so many complications, and now I've had a massive seizure and a few auras, albeit it was almost a year ago. Brain surgery is not a simple procedure, and the brain is a delicate beast. Also, my type of brain tumor is not like the others - most have clearly defined borders, mine is diffuse, it's infiltrated, it's intertwined with healthy brain tissue, it's messy, complicated, and dangerous. With a brain surgery, I could die - anyone in my position could. Due to the location of my tumor, I could become paralyzed. I could lose the ability to process speech. Is it worth it?

Here's a video with Dr Linda Liau the neurosurgeon at UCLA who is conducting my prospective clinical trial. This dendritic cell therapy is the most effective and promising treatment to ever exist for brain cancer patients. It's a pretty big deal.

This dendritic cell therapy treatment could cure me. That concept is very appealing. According to the research that we've conducted, there are several supplements that could also cure me, however it's exhausting trying to juggle the various combinations, playing trial and error until we get the results we want. I'm just getting started with the supplements, I'm taking a gazillion pills each day, and the dosing is all dependent upon my previous pill set since they're time dependent. I constantly have to keep on my game, up on my schedule, and it's exhausting. If I could be cured with a brain surgery and a few dendritic cell shots, heck, it sounds promising.

It costs $500 to be reviewed by the team at UCLA for the dendritic cell therapy, and in order to keep the door open, I decided to just go for it, and pay out of pocket. Luckily, this morning my mom reminded me that my insurance provides the right to get a second opinion from a new oncologist/surgeon etc. So, a few hours ago, I emailed my oncologist's nurse to get a referral to Dr Linda Liau at UCLA. I was hoping that this way my insurance would help cover a portion of the $500. Unexpectedly, my oncologist said that he wanted to read the clinical trial before he would refer me. What the hell! Are you serious? He should just refer me - it's my business. I feel like my oncologist always wants to be the one to make the decisions. I emailed his nurse back and told her the details of the trial and then gave her Dr Liau's email address. I told her that the Dr is very prompt, and that I would be contacting them again tomorrow.

It's my humble, uneducated, opinion that if I want a referral for ANY reason, my doctor should just refer me. Period. I mean, seriously, there's a chance that Dr Liau's team might reject me after reviewing my MRIs. I might not have enough tumor tissue, or my brain tumor might be too integrated into healthy tissue to safely resect. My oncologist has no right to delay my progress. This is not his clinical trial, he needs to step back. He'd better not get in my way....it's making me upset....in fact, I'm mentally toilet papering his house as we speak! No one, no thing, is going to get in the way of my healing.

I still don't know if I even want to do the trial, but at least, I want the option to be accepted. Why close a door on any treatment? I think it would be foolish of me.

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........

Innately Healthy

I saw the most random sight today, my happy little turtles were hanging out with a heron. Pretty cute! I'm lucky to have such an amazing wildlife refuge right here in the city. It keeps me connected to the freshness of nature.

I took today off of my IV treatments. It's just so much money, and it exhausts me. So, instead, I started doing laundry, and fiddled around the house. I even went for a jog along green lake, stopping at a bench to rest and enjoy the outdoors. That's a first. Usually, I run from doorstep to doorstep. I always enjoy the view, but I never take the time to just sit. Just breathe. Just live.

I've been wondering lately, if maybe I'm in denial. Although I do a crazy amount of research, take a lot of pills, and focus so much on treating myself, I have to admit that in my heart of hearts I don't feel sick. I feel alive, and believe that my exhaustion is due to my treatments, not from my innate body.

Sometimes I wonder if I'm already cured. Is that weird? Is there a way that I'm supposed to handle a situation like this? How do you handle a silent monster growing in your brain?

You're In My Heart

I have a sweet, sweet friend named Libbey who is going to kill me for calling her out on the blog, but I absolutely have to share because she's so kind. Libs was shopping in Friday Harbor at Daisy Bloom and happened upon this sweatshirt. She loved it so much, she bought one. But while she looked at it, and felt how soft it is, she thought to herself, "I think Jess would like this. I'm going to get her one. This way, whenever she's tired, or sad, she will be enveloped in softness, and when she sees the heart she'll be reminded of all the people that love her." Wow. So, here I am, absolutely drained, completely exhausted, worn down from the usual, and the effects of the afternoon IV, and I'm snuggled up in love. My body is warm, my heart is bursting, and I am ready to cuddle the snot out of my Mr Bingie cat. I don't know how I got so lucky to have such amazing friends. Seriously.