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....

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.

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.