14 Years Later

 

I was told I would never live this long, that I would be lucky to see 4.5 years. Today, 14 years ago, I was diagnosed with a honker of a brain tumor, and four brain surgeries later, I'm still here.

It's an endless saga of treatments, research, medicine, fear, bloodwork, MRI's, seizures, new opinions, old drugs, new drugs. Living the brain tumor lifestyle, rather than fighting against it, has given me so much more insight into what might be possible.

I remember thinking, "As soon as I get rid of this tumor, I can go back to living a normal life." But somewhere along the way, I realized, I couldn't have both. I couldn't go back to living a life not centric to cancer. That in order to thrive, I had to completely evolve my thinking and actions. 

My health is paramount, my research and ever evolving wellness is a gift that I give myself.

I don't have social media, but I will post updates here, from time to time. Thank you for the love and support. 

I can't believe I'm still alive, playing here on Camp Earth. It's fucking awesome!! 

Even if Just for Today, We Persevered

Each moment bleeds into the next, with so many responsibilities, so many tasks to complete. It's exhausting. But, today, we did it! This morning, it took walking around the UCLA campus to different departments, a lot of explaining, and some phone calls, but we completed our mission. Thank you to everyone who offered their assistance, and appointments, I didn't see all those until later, but it ended up working out! You guys are AWESOME.

Sometimes in life, no matter how creative, and persistent, you get, you run out of time and options, and I'm just thrilled that we were able to fulfill this need, this desire. 

I completed the pre-op MRI this evening at a UCLA alternative location (Santa Monica). Same style, 3 tesla machine, which was important to me, because I want my radiology reports to match. MRI machines can have different strengths (ex: 3 tesla vs 1.5 tesla), also they can have different amounts of slices (ex: 1mm, 2mm, 3mm vs 4mm). My goal is to keep everything as standard as possible between scans so that they're easier to compare. Anyway, they were able to facilitate the same pre-op scan that was scheduled for Thursday. The functional MRI is still slated for Thursday afternoon, which will determine if I'll need to do an awake craniotomy or if I just get to take a sexy little horror movie nap.

My relief is palpable, if not temporary, for the stress of tomorrow's cognitive and competency testing which will be several hours of mental acrobatics and interviewing. These test are a baseline for when I get out of surgery, to compare any possible deficits. That way they'll know what kind of assistance I may need (physical, language, and/or occupational therapy). 

Wearing Resilience socks, thinking about all the other patients out there in my same shoe....er.....socks?

I'm bone tired, but elated that I was able to follow my intuition, and find some answers in all of this madness. I'm not expecting a miracle of healing (although I never rule anything out), but I am a tangible person who needs explanations and information to feel comfortable about big decisions. 

I understand that I am living with brain tumors up in this noggin'. I'm not pretending anything otherwise, but I feel incredibly capable, and healthy, and before I can comfortably sacrifice my body to the table, I have to feel assured. Even though this is my fourth brain surgery, it has not gotten any easier. In fact, I'm noticing that everything is becoming more difficult. I'm losing my pain threshold, I can sense my body, my spirit, remembering the trauma of all these surgeries, especially the one where I almost died. That pain, that subconscious awareness surged through me today as they inched the MRI needle closer to my vein. It was in the powerful magnet of the MRI that forced every cell in my brain to shift in different degrees, to manipulate my fat cells, and water cells, the tissue forming into just the right image to see what is going on in my head. It took everything in my being to hold back a seizure. To hold back tears of how brutal my body has been and continues to be treated. 

If she [my body] was a person on her own, my poor little Body, I would want to take her by the hand, and pull her close. I would rock her, in empathy, and hum her a beautiful melody. It wouldn't change the damage, but I would do everything in my power to console her. 

She's done so much for me, and I keep abusing her. 

It's not what I want, but my choices are limited.

Can't Fly Blind

Been scrambling to get a MRI since Friday, because I know that I can't walk into this surgery blind. I haven't seen what's going on in my brain for almost two months, and things can change. I'm not saying that the tumors are gone, or that they've shrunk, or even that they haven't exploded in growth, but my intuition keeps nagging at me that I must know what's going on up there before I am at peace before the bone saw.

I don't think my request is that unreasonable, however, it's just not how things are done in medicine. Right now, if nothing changes, I'm scheduled for my MRI, and fMRI, this Thursday, the afternoon before my early morning checkin for tumor removal. The problem is that radiology reports take 24-48 hours to complete, and I've been told by my surgeon, and the team at UCLA, that we won't have that report in time for surgery. Apparently the actual radiology report (which measures changes from previous scans, and compares growth, etc. isn't necessary for surgery).

But what if there are changes? I don't even know what's going on up there. 

I don't know why I need this so badly, but I don't want to lose my surgery date, we have uprooted our whole lives, taken time off of work, set up help at our home for our cat, traveled, adjusted, planned, and now I'm told that even with a week's notice, I can't get an MRI to see what's going on in my brain.

I asked for an additional MRI to see if we could facilitate that. I offered to pay if insurance doesn't cover it. We have called facilities all over the Los Angeles area and I can't get an MRI without a doctor's referral. THIS IS MY BODY. THIS IS MY BRAIN. Why is it so difficult for me to get this simple request?? I am the customer. I have insurance. What is going on here, in medicine, that I cannot be an effective advocate for my body?? It is not unreasonable for me to get a 45 minute MRI before a surgery, to be put at ease, so that I can undergo a life or death situation. Let's face it, it's a very dangerous operation. This is not a broken bone, it's my mind they're digging into.

I don't want to push back the surgery date, I don't want to work with anyone other than Dr L. I have 100% faith in her, and I am grateful for her compassion and meticulousness. She's brilliant and I absolutely adore her. I am incredibly grateful for the opportunity to be her patient and to have the ability to get whatever amount of tumor she's able to successfully remove, but I just need to see/know what's going on in my head before I can feel comfortable. I'm even having dreams about it. The desire is permeating everything I do. My intuition is going full force. 

So, dad and I woke up in the 5 am hour and we're headed to UCLA neuro today, to talk to people face-to-face. To be clear (since writing may not convey my tone), I'm not angry, I'm just hopeful that by sharing my deep need, and being available all day, perhaps there will be some people working there that can help facilitate my needs. I know I'm being a pain, and that it's an abnormal request, but I just feel this so deeply. 

My gut has served me in the past, and I won't start ignoring it now. Even if the tumors are shockingly massive, at least I will know, and I can be prepared for what lays ahead.

I call her Mary, our Jasmine vine.
She perfumes us as we leave, and cleanses us every time we arrive.

Past The Meridian

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you, as always, for reading.

Love,

Jess

UCLA Update 2017

I hesitate to talk about it, because I don't want to exploit the beauty, but on Saturday, because of the Skid Row Carnival of Love, I had the opportunity to meet a man who lives on The streets in LA. 

Dan and I on our way to Skid Row Carnival of Love

We're down here for medical reasons, and I was supposed to spend this weekend relaxing, finding my truth, maybe soaking up some sun, following my intuition, making decisions on what to do for treatment, but when I realized I had an opportunity to connect, for life to not be about me, my own issues, I knew it would make me happier than spending time reading a book, or thinking about life or my own issues. 

Yep, again I realize retrospectively, I'm not taking care of myself. Or am I? I mean, each day we make make decisions, each moment, depending on the pace, on what fulfills us, that which can also heal us.

I wanted to do for others, for Mike my new friend from NC, what I have done for my own grandma, what Dan does for me, I wanted to wash feet. 

There's this raw humanity of touching feet. It's vulnerable, and raw, and for people to open themselves to that private pocket of their life, it's incredibly endearing. That Mike trusted me, and that I could give him human touch.

My god we laughed!! I couldn't deny his quarterback, Cam Newton (who I always refer to as a transformer - have you seen him???), and he kept hollering toward Dan, "Blue 42 - Blue 42. He's a big boy!"

It has been an insane weekend of connecting, and loving, and until last night and today, I was worried about others, and trusting that the universe had my back. That's a wonderful thing, but also dangerous, because we are the only ones who can take care of ourselves. No one can tell me what to do, no one can tell me what is best, I have to find my inner voice, I have to reconnect with what feels right in my soul.

This morning we were told that the areas in my brain are most likely resectable. My god that is GREAT news. Regardless of the reality of a brain surgery. (No small potatoes.) In every moment when I receive complicated news, we immediately spin it. I have lost so many brain tumor friends because their tumors were inoperable, and I recognize the good fortune in my life. 

For now we will focus on removing negative influences, drains, and we will be enforcing a fabulous new protocol that includes a multi-focal awesome new set of rules that focus on laughter, fresh air, connecting, and loving. Sometimes you have to bring it back to the basics, and heal before you can help others. It feels horribly uncomfortable, but I have work to do during these next few weeks until surgery. 

I want to live. I want to learn. I love to love. And to make that happen, I have to focus.

Thank you for loving us, for supporting us, and I am so sorry that I'm not able to respond to everyone - the amazing comments and FB posts, or IG posts, my phone - the texts, calls, emails - they mean SO MUCH to me, they lift me up, which lifts up Dan - because honestly, Dan gets the brunt of carrying the weight. He is the silent hero. I know you see it, you have to. I would be a completely different person without his strength.

And thank you for sending your prayers, and love, after that last post, I swear your love was absolutely palpable! I couldn't even believe it! When I receive that love, it overwhelms my body in a way that I finally calm down, and rest. I laugh more, I feel that energy. So thank you! I just need to heal so that I can give it right back to you, to everyone. 

UCLA Tumor Board Results

Dang it if brain tumor life isn't confusing. At least in my world! I can't be the only one who has these types of yoyo results. I mean, it's better to have differing results than a truly horrible, obvious situation. The ups and downs, though are insane. 

If you don't want to watch the whole video (3 min 44 sec), the short is: tumor is growing, albeit slowly. (Think millimeters.) I believe the two treatments I added in the past two months, are helping - who knows, maybe the tumor had grown more in the interim, and now they're even shrinking it? Who knows! I rule out nothing.

My neurosurgeon at UCLA offered a brain surgery to remove whatever she can, or she said she is "comfortable" waiting 2-3 months for another stealth (pre-op) MRI. I opted for the latter, and agreed that if I had furthering symptoms, I would move up the scan.

Some people might think I'm crazy to push-off brain surgery, since I have a growing tumor in my brain, but there are inherent risks involved. Remember when I had to learn how to walk, talk, read - learn the alphabet again?! I do. We will never know for sure if the decisions that we make are the best ones, but a decision is what we have before us. For now, we try to do the least invasive approach. If that isn't enough, we will evolve as we always have.

It's confusing because the symptoms of my seizures are the same symptoms that tumor growth would cause. The main take away right now is that it's important for me to stay the course on exactly what I'm doing treatment-wise, and perhaps even add a few non-toxic, whole body health boosting things. And I really need to lower my stress levels. They directly cause extra seizures, and that makes diagnosing possible tumor growth, very difficult.

With all that being said, I should go to bed. I have a big day planned with a bunch of friends tomorrow. We're doing a nature hike in an old growth forest. I'm so excited! I'll be sure to hug some trees for all of ya. ;-)

Half of the MRI Results (Swedish vs UCLA)

Basic update about our current and upcoming results for treatment.

New Neurosurgeon, New MRI Scheduled

Just snuck and took a video in my first neurosurgeon's apppointmet at Swedish, in Seattle. At the end of the video you can see a slice of my brain, which includes the brain tumor. Yuuuuck!!! It's gross. Every. Time. I. See. It. The image is from back in April, so it's not even current.

On this Thursday, I have a MRI and cerebral fluid scan to evaluate the growth, and see how much blood is going to the tumor. The fluid scan tracks the metabolic activity which requires more blood than regular tissue.

Will meet with a new neurooncologist after the scan. Then I will upload my images to UCLA's system and hope I get in for next Wednesday's tumor board. It's frustrating that they only review cases once a week. If there's a backlog it can take weeks, even a month, to get results on treatment recommendations.

Big day today, but an even bigger one on Thurs. Fingers crossed that all of my little issues are treatment effects, not tumor growth. I believe in miracles. And in my opinion, it only takes one to change your life.

Bus Bacteria Bad. Brain Bacteria Good.

Hey Guys,

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

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

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

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

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

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

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

A famous Bonnie Birthday cake. Delish!

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

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

In All The B's

*Written somewhere over the midwest, as I flew home from NYC late last night.*

I never anticipated growing up. I mean, who does, or we would choose to wear sunscreen at age 4, and I've never seen a child apply SPF by choice. When you get this crazy diagnosis it's like living in an alternative universe; you're instantly catapulted into the raw threads of life. You're 29 and 99, all at once, wondering where your life went.

My favorite part of cancer is that there's people whom I've fallen in love with. They're kind, they're gracious, they're real, and explosively smart. They're honest, we quip, tease, and I can't believe that somehow my life collided with theirs. I know that I would have crossed paths with other people in my sliding doors life, and they would have been deep, and knowing, encompassing, challenging, hilarious, so I know you don't have to be a cancer patient, or caregiver, to be "enlightened" - yuck, I don't even like that word in the context. I'm swirled with people of all backgrounds, different histories, and the longer I live, the happier I am - if that's possible. Who would pick cancer? Not me. And I'm not convinced that I needed to get cancer to meet these souls. We could have met when we were in a shared taxi, at a resort, on a hiking trail, in a public bathroom. I mean, come on, you guys know me - a person is just a friend I haven't met yet.

I'm expected to do another brain surgery in Oct, and that was put off from May. I kinda want to point out what a bad girl I am, but it's not that simple. I needed proof to make sure that when they saw into my skull again, for the 4th time, it's necessary. I now know 7 different patients who had brain surgeries for recurrence, and it was in fact necrosis, inflammation, or slowly growing scar tissue. Crazy!! No spank you. (Granted, over the past several years, I've probably talked to hundreds of patients and caregivers - so it's not exactly common.)

I should have already gone under the knife, and I know from experience that I should be panicked; I could have already lost my crap. But you know what, we will die when we die. Ya, sure, duh, if you love those around you, you don't want to let go, and I don't know what has changed, why I'm chill, but who cares, all I know is that I will live my life not in fear. And more than ever, I'm not focusing on what I do not have. We are out of treatment money, yet I have never been more at peace. How weird! I'm not going to look a gift horse in the mouth. Maybe I won't even look at any horses.

I'm literally flying home from NYC as I type, no treatment rendered. A risk from international treatment issues. My point is that I was listening to a couple (just a few) survivors complaining about the fact that we did not get our most recent treatment on time. Not all, but several, were pissed because they had vacations scheduled. Weeks off. Do they not see the projects we drive by on our way to the clinic? Every time I blow through South Jamaica, Queens, on my way to and from treatment, I think about all those apartments, those high rises. Statistically, there are people in the projects that I pass and I doubt they're getting any cancer care, in fact any medical care, and when I hear those complaints I'm floored. It's not my role to teach people, to change others, but man is it eye opening. Fuck you guys, seriously, what does it take for people to realize how gifted we are? I'm not saying we can't complain about circumstances in life, but know your audience. Put things in perspective.

We are the privileged. Yes, my treatment was delayed by several days. No I wasn't able to stay or come back. Everything is a give and take. 

Am I scared? Bheh. No. Yes. Sure, but not really. My fear is to leave Danny. I'm convinced that if I die before him, I'll haunt him in the bees, the butterflies, the bats, the butterscotch candy he sucks on. In the burkenstocks the person next to him is wearing. He will see me in the laminate countertop on the ferries as he heads back to our home island. In the whip of the wind against his face as he gets into his truck for work in the morning. He'll see a red summer dress and think about my silliness. Is silliness even enough to accurately describe? He'll see a goober dancing so ridiculously in the grocery store that I hope he'll dance with them to not leave them hanging. 

But worse would be if he left me. That would be unbearable.

See, I have it easy. :)

A photo from my First Descents kayaking & camping trip earlier this week.
No need for a filter, life is stunning as is.

UCLA MRI Results: Surgery Needed

I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don't know if I could stomach a fourth surgery, but before I can commit to that anyway, I've requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation.

It's confusing to hear conflicting results from two different centers, but that's nothing new for me. At this point, I'm waiting for insurance to approve the scan. Next, we'll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek.

As always, I'll keep you abreast. (That word always makes me laugh, so I had to throw it in there.)

PS It's my brother's birthday today, so if you see him, please don't say anything until tomorrow! xo

Bacteria on the Brain Article

Holy cow this is amazing! One of my buddies sent me this article, probably knowing that not only do I love hearing about brain cancer/tumor treatments, but also I am enthralled with bacteria and viruses and how they can relate to cancer growth and treatment. If I ever have to have a fourth brain surgery, I want my brain flap soaked in Enterobacter aerogenes too - and what a surgeon! Dang. A true doctor, and true healer. I love problem solvers.

If you have any problems viewing this amazing article please click here: Bacteria on the Brain.

The Post-Traumatic Stress of Cancer

As you guys can tell, I haven't been posting much. I've been trying to soak up as much life as possible. There's so much to see and do and experience. Half the time it's just around my own neighborhood, but also, since I've completed the years of Chlorotoxin, I'm free to eat and drink whenever I want. I don't have to administer medicine every four hours, and it's freeing. It's been weird, and a daze and a miracle and a gift. To feel human again, and "normal".

It took a few weeks to absorb it. I kept withholding food and water because the treatment protocol had been ingrained into my system. To be able to drink water whenever I want, all day every day, has been the most exciting thing. It's not that the treatment protocol was so hard, necessarily, but to go without water for four to five hours a day when dehydration triggers seizures has certainly been a challenge over the past two years. It was debilitating. The only thing that I fear more than a seizure is a recurrence, just to put it in perspective.

Honestly, I'm literally terrified every second of every day. I'm able to shove it off and distract myself and breathe and align myself with gratitude, but that when the night falls, when silence creeps across the threshold, my mind gets louder and louder. The cracks in my brain, the hot spots, the unique headaches, start talking. They nasally laugh and tell me in their jackal voices that I can think I'm winning, but they know something I don't. They scoff and trip my walking mind. They tell me I'm dying, that everyone with this cancer dies.

So I don't sleep well. I read my books, my lids drag down. I turn off the lamp, I sigh that deep sigh, and I start to drift. And just between thoughts and fantasy, my body jerks and tenses. My pores prickle and sweat. My heart races, my head spins with delirium. I think of everything wrong that I've eaten, every supplement I forgot to take that day. I kick myself for not exercising, for not taking my care more seriously. Because the truth is that I'm not as diligent as I used to be. My diet is not on point, I am not the machine I once was. I want to live, but at the same time I want to LIVE.

I don't think I'm alone in the late night self loathing. I don't think I'm alone in the late night overthinking. I wish it was something I could turn off, and boy do I try, but it's in my psyche. It is who I was from the time I was in the womb. It's in my core, and as much as I meditate, as much has I repeat my mantra, "Thank you. Thank you. Thank you." It's not enough, this doubt, this overactive mind is on a cellular level.

So I live, and I ride my bike, and go for walks with my walking group. I garden, and laugh with friends, and play with our dog, and snuggle with my cat. I paint, and I continue to be awe of the fortune of my life, my health. But deep down, I continue to be scared. My body has memories of pain, a deep sadness, the fear of death, the throwback of when I was diagnosed, when I was awake and they were cutting into my brain. The flashbacks to the recovery, relearning how to read and use a knife. I feel great, I love my life, but I have post-traumatic stress that I live with, and can't seem to fix. And the fear is that I don't know if I ever will.

Thank you to the sweetheart who anonymously commented on the blog on the 4th of July weekend wishing us a wonderful holiday. It made me feel incredibly special. We went up to Friday Harbor our hometown to spend time with friends and family. It was magical. We even got out on a friend's boat to do some fishing and were surrounded by a pod of Orca whales. It is not lost on me that I was raised on a piece of heaven. Friday Harbor is a panacea to my soul.

San Juan Island Marathon

I have exciting news...I just finished talking to Dan and after getting the green light, I have decided to train and attend the Kings Market San Juan Island half marathon on Sunday June 16th. I'm so excited!!!

I am so incredibly thrilled to have a new goal. I can't wait to match my longest run, only this time it will be 8 months after a brain surgery. Depending on the schedule of shots, I may have to get a shot in the days before or just after the race, I won't know for sure until May. Either way, if I'm tired, I figure I will walk if I don't feel well :)

I've already worked out the training schedule and I will be able to train during the day, during the week. This is going to be so fun!! I'm shifting the schedule so that my runs start on Monday and my long run is on Friday.

If anyone is interested in joining, I always love to see smiling faces. This is going to be a great accomplishment. And I can't wait to have it happen in my home town :)

I have this planned so that I can run in the morning then nap in the afternoon. I don't want to jinx myself, but it seems to be the perfect plan! Woooo hoooo!

Possible Exclusion

When I can't sleep, I read about the success of my chosen treatments. Whether it's the results of the current dendritic cell therapy trials at UCLA (around the US, or even the globe), or the supplements and how they selectively induce apoptosis in glioma cells. When I'm afraid, I read. Last night, while trying to get more information, I stumbled upon the Exclusion Criteria for my clinical trial and right up there, first on the list, #1.......Subjects with an active infection.

AAAAAH!!!

My temperature is gone, my throat still hurts but it's getting better. I have been sitting on my bum or sleeping. This is so frustrating! The whole point of this trial is to train your immune system to attack the tumor. If my immune system is down the vaccine will not be as effective, perhaps not effective at all. I understand the exclusion, and that means I have to get my act together. Looks like I'll be laying low. I even asked Dan to pick me up a face mask for my flight. Yep, I'm going to be one of those weirdos that will be wearing a sickie mask, the bird flu kind, it's ridiculous. Oh well. Gotta do what you gotta do.

I'm sorry if I'm not returning very many texts, emails or phone calls. It's not that I don't think about all of my amazing friends - I do! All the time. It's one of the things that keeps me going, remembering all of the laughter, and fabulous ridiculousness of my life. But, it's true what they say, when you're fighting a beast like cancer you have to focus your priorities, and although I wish it wasn't the case, I have to focus all of my energy on resting and preparing for my trip. I'd rather be running the lake, going to dinner, or having a glass of wine with my girlfriends. Actually, I'd probably rather be doing ANYTHING other than preparing for another brain surgery. I can't think of much I would like to do less than a brain surgery. I only have so much energy at a given time, especially when a treatment is around the corner. I imagine it's like being a mother of young children. Your children have immediate needs and they can't take care of themselves. That's like cancer. All of a sudden, at times, everything else in your life falls by the wayside. I'm sorry that I'm not a very good friend right now. I hope that you can forgive me. I read all of my emails, text messages, etc., and I appreciate them so much, I just might not be able to respond.

On Tuesday, I got a copy of the only photo we have of Dan and I at Dallas & Kelley's wedding in Chicago. I think I'm so nervous to see what I actually look like in full shots that I've stopped taking them. I need to get over myself. It probably sounds weird, but I feel happy and healthy and I don't want to be analyzing my appearance, which I tend to do. Sorry it's a little bit blurry, Jen's daughter Kai took it :) I find it absurd that I can get caught up in such trivial things when deep in my soul I know I have a serious issue. I'm a contradiction of survival and vanity. It's confusing and embarrassing at the same time. How can a girl who has her life on the line be concerned about her looks, about material things, surface stuff, or image. I'm an anomaly to myself. I guess, in the midst of all the craziness, I still want to be a woman who's attractive and put together. To look as good as I feel.

I'm juggling a lot of things emotionally, physically, even spiritually. It's weird to ride the waves of cancer. One fabulous note that I realized I haven't shared, is that after April's MRI, my parents sent a copy of every single MRI to an independent radiology reading center. They did not get any extra information. They did not get my pathology or diagnosis. They didn't know the names of my doctors, or the treatment that they were recommending. My parents did it behind my back and just recently told me the result. The specialist who reviewed all of my MRIs said that my tumor has not grown.

I'm not sure what the deal is with the University of Washington and their radiology department. Do you remember when I talked to my doctor about how my radiology reports from the MRI readers stated that the tumor had not grown, yet my doctor and the nurse were trying to prove to me by measuring the tumor at my appointment to convince me to do radiation? What the heck?!? Or what the HELL is more appropriate. Please beware of my story. I have the top radiation oncologist at the UW who also teaches at the college and works at Seattle Cancer Care Alliance. I have no idea why there would be a discrepancy between those who read my MRIs and my doctor, but something is very fishy. I'm just grateful that I did not listen to my doctor. My brain would have been long fried and who knows how badly that would have turned out. I'm not necessarily against doing radiation but I would want to do it as a last resort. If my protocol is working, why beat a sleeping monster with a sledgehammer. Just tranquilize it.

So far, from October to April I was able to stop the growth of the tumor. I skipped the MRI in July due to the attack, so six months will have passed when I have my MRI on 10/15/12. Hopefully, I've been able to continue the trend, maybe even reversed it some. Anyway, I just wanted to share that information about the MRI readings. It is so important to analyze the information. It is imperative to get copies of all of your reports and look at them yourself. And if something doesn't sit right, pay the extra money and get an independent review. The worst case scenario is that you might be wrong. That you should do what your doctor is telling you. That you might be back at step one and out a little bit of money. But so what. At least you'll know that you checked your bases. Be strong, and follow your gut. Take whatever little energy you have and put it toward advocating for yourself. Don't just follow the cattle chute. You are the only one who can find the best cure for your body. There are so many successful treatments and there is no doctor in the world versed in all of the options. Be your own general manager, please don't be afraid of taking charge, and sometimes that means giving leniency to those on your team. Back in April I told my parents that they could solicit reviews of my case from other sources, I just didn't know that they were going to go through with it :) 

Thanks mom & dad for doing that review behind my back. If you have someone who can take the hits for you, double check things, etc. it's nice to not have to field the blows all the time. If the news was bad I would never have to know, but since it was positive it ended up being a gift. They knew that I wasn't going to do radiation anyway at this point so they felt no need to stress me out or fire me up right away. They waited for the right moment, once my mom had a martini in her :) She and I are open books that way. So there you go. A huge blog today, I guess I had a lot on my plate and it feels good to get it out. I fly out on Monday, and on Tuesday morning I have my Dopa PET scan to make sure that I actually have tumor tissue not just scar tissue. Let hope for a miracle! I probably won't know the results until the 16th. Of course, I'll let you know as soon as I can. Love to you all!

My Inner Coward

My favorite photo of Chicago. Matt and my gummy bear race in his, Miriam and Nate's room. It's fun to laugh with friends that we've known since we were little. Matt & Nate lived next door since the time I was in middle school. I remember, from time to time - when I was lucky - getting rides home from school from the neighbor boys, saving me from the one mile walk along the dirt road. The Wight brothers. They were always down for a little basketball at their place, or mine, you would hear a ball bouncing and it was on. I have so many amazing memories in Friday Harbor. Sometimes I wish I could go back in time and relive it all over again. Back to a time when my biggest concern was earning my driver's license.

I'm writing another post because I can't sleep. I feel like I have adrenaline bursting through my veins and nausea, along with dread, fear, and some sadness. I am one of those girls that is walking with the weight of the world on her shoulders. One of my favorite TV shows is called Parenthood. Dan can't stand it because it seems too realistic, but for me that's exactly what draws me in. One of my favorite things in life is watching human dynamics, and relationships, ebb and evolve. I'm in a vulnerable place right now, inching toward the knife, again attending appointment after appointment, MRI after MRI, reality into reality, deeper I go. In my show one of the characters has been diagnosed with breast cancer and the storyline stirs up so many emotions. It makes me confused, and reminds me of so many things. I find myself watching with tears running down my face. It feels cathartic and yet masochistic.

I am terrified of undergoing another brain surgery. I am scared for my head, all my little happily rebellious hair follicles, the scalp, the skin, the scar, the skull, the dura mater, the meninges, my brain tissue, oh wow, my poor body. Last time I went under the knife it was not an option. This time, I worry that I might regret walking into this. It could cure me but it could also kill me. That is a heavy burden and it's mine to bear. There are craniotomies performed all the time, hundreds perhaps thousands, I'm sure, most days of the week all over the country. I love hearing success stories, but unfortunately, I hear mostly those of horror. And with my history of complications, I feel as if I have plenty of reason to be concerned. I feel as if I am in my weakest point, that my warrior spirit is at an all time low. I'm still happy and enjoying my life, I'm laughing a lot, but deep in my soul it's stormy.

I don't need anyone to fluff me up and build my confidence if it isn't genuine, but if you could be strong for me, I would greatly appreciate it. I am unable to bear more than my load, and I'm sorry for that. I wish I could be stronger.

The Pleasure of Being Alive

I'm on hold with Jet Blue, figuring out flights. I still don't know when I'll be able to fly back home, but I'm paying for refundable tickets so it should all work out. I booked different flights for Dan already too, and that makes me really happy :) Dan's taking some time off for the surgery and recovery. It's a huge relief that Dan will be with me. He makes me laugh, nurtures me, and puts me at ease. I don't know if you guys remember, but after the last brain surgery, Dan would scoop me up and put me into a bubble bath. He would gently shave my legs and armpits. He coordinated over 80 pills daily, all of them falling at different intervals, even through the night. Dan did not sleep unless I slept, and even then he was so worried about me that he would be taking care of things around the house like food, or laundry, or just laying there softly cuddling me. I never thought I would be as lucky as I am. I never thought I could love someone this much. He's the most gentle and kind human I have ever met. He's amazing. This whole thing is crazy, but I'm becoming more and more ready, not only with the planning but also emotionally.

This is an amazing opportunity. It's the treatment that I wanted, with the best results. Originally, I was going to fly to Germany and do the same treatment. The only difference is that they were going to try and use my old tumor tissue, the one from 2.5 years ago. The problem is that the tumor tissue can morph. So, to have the best success rate you need the freshest tumor tissue. This clinical trial fell into my lap. It landed via email from my brain tumor fighting buddy Jessica. I had written off the trial because I thought that I had to do chemotherapy or radiation - or both - in order to participate. And now, here I am, I'm included in the trial, with the possibility of the absolute best results (I've read that the German treatment is 20% less successful). This trial does not come without costs. There's the cost of the brain surgery, hospital stay, all the medications, all of the scans (MRI, fMRI & DopaPET), all of the testing (pre-surgery language tests, cognitive tests, & surgery clearance), in fact I can't even think of all the costs at this point. The only thing that is free is the actual dendritic cell shots, of which there will be three. And, above the financials, there's the physical cost. We will not know the true amount until after the brain surgery has commenced. I won't feel comfortable until at least 48 hours after the surgery. Last time, I was fine when I came out of surgery, but within 24 hours I started to deteriorate. That's when my duramater peeled from my skull and a blood clot formed in the tumor cavity, and that's why I had to have a second emergency brain surgery. I'm keeping my fingers crossed that I won't have the same complications, or any complications for that matter!

I have to run out the door, literally, to a hair appointment. My final trim and tint before the surgery. I'm opting to keep my hair, although they have to shave it in certain areas. I'm hoping to do a Donald Trump comb over :) We'll see how THAT looks. I might get sick of the crusty blood in my hair and the scab could prove difficult in that birds nest, but it's worth a shot. Yes, hair does grow back but unless you've shaved your head you don't understand what it's like to be bald and to deal with the horrible phases of grow-out. It's something I'd rather not experience again. I probably sound silly, but there are things that you can control, and there are things that you cannot. I like to control my hair. I like having the option of wearing it curly, or straightening it, either way at least it's there :)

Could you guys do me a favor? Could you please, after you read this, choose to go for a walk, or a jog, or do a push up, take the stairs, park further away from your destination, and then take a moment to thank your legs, your feet, and your body. After the brain surgery I will not be able to run for quite awhile. I will not be able to get my heart rate going or it will cause headaches and such. It will take time for me to heal, to ride a bike, to hike a hill, to push myself. Over the past 24 hours I've ran 14.5 miles because I'm so grateful to have the option. I've been jogging around the lake, the neighborhoods, like a complete goober smiling at the dog down the street, and his neighbor the calico cat whom I respectfully named the mayor of Green Lake. I'm breathing deeply, enjoying the pain in my muscles, soaking up life. Please join me by doing something that gets your heart going. Please take a moment to thank your body. Please take a moment to truly enjoy being alive.

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....

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...

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.