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.

Not Mutually Exclusive

Good morning world. I'm feeling wonderful after two consecutive days of napping. Yesterday I even napped twice. Today, apparently, I was still pretty pooped, I slept in until 10:00 am. That is a straight up miracle since I had been waking up in the six o'clock hour all week.

Danny and I have been hitting the weights pretty hard, keeping up with the running, and it's causing a delicious exhaustion of my body. It's a great feeling. It makes me feel so alive! Last Wednesday I did 90 squats with the weight bar bearing 5 lbs on each side. I don't know exactly how heavy that is, but it felt punishing. I probably sound weird, but it's thrilling to push my body. While exercising, I often flash back to the days in the ICU, and then the weeks, and months when I couldn't run or lift weights.

At the time when you're unable to push yourself for fears of seizures, or just flat out pressure on your brain, you feel like you may never get better, that you might not recover. Each time I get to push myself, each time I sprint in the final strides around Green Lake, I end up panting with deep breaths, elated, almost giddy at my abilities. I tell myself, as I wind down into a slow walk, "You just kicked ass!" There's something about really pushing your limits, and I think it's okay to fluff you own feathers. When you get off your butt and challenge your body, you should be proud! There's no shame in that.

It's Monday, so I'm back on my high doses of pills. Today, I thought I'd share exactly the brands that I use, and exactly the what the doses look like. It's 4 pills from each bottle, taken with a cup of whole organic milk. It's important to take the pills with whole milk because the pills are fat soluble.

I am writing this blog to share my experiences throughout my brain cancer journey, including my various treatments. My hope is to have step by step information to share with others who may find themselves in a similar position. I hope my new friend won't mind, but I'm very excited to share that I was contacted by the brother of a gentleman fighting a glioblastoma. He found my blog while trying to exhaust alternative treatments as he has already endured a brain surgery, radiation, chemotherapy, a second brain surgery and the placement of chemo wafers in the tumor cavity. His brother is a total badass cancer fighter. I shared with him more information about the past several months and what I've been doing. I realize that my blog isn't exactly easy to navigate, so I was ecstatic that he emailed with questions! I am so hopeful that my information might be helpful. This is my dream, to be contacted and help share what I've learned. It's FANTASTIC. I truly believe that we can beat these cancers, it's just a matter of varying the doses as we find what works best, and each body is different.

This treatment directly targets cancer cells while leaving healthy cells intact and unharmed. It's amazing! It's everything we've ever looked for, it's everything we've been dreaming of. To anyone out there, please, never hesitate to contact me with questions. I want to help. I want to share everything that I know. Yes, diet is very important, as is with exercise, and reducing stress. But, diet and life changes alone will not cure you of brain cancer. That's what I believe anyway, and statistics seem to concur. We have to be proactive in our treatment. I mean, think about it, if this treatment of mine doesn't cause any damage to healthy cells, why not try it? What do you have to lose? We've already shown that it worked from Oct - Jan between my MRI scans. No. New. Growth. None. Zero. On slides from the two MRI scans, comparing the exact slices, little Hermie appears to maybe even have shrunk just a tid. He definitely lessened in intensity. It's scary to go outside the bounds of our doctor's advice, but it's already been stated by the same doctors that they can't cure brain cancer. So, essentially, they don't have a solution for me. I'm on my own, except for my teammates in the artemisinin cancer fighting world. Thank God for them. I've always been a sucker for answers, and I have never been good at following statements like, "Because I said so." That just doesn't work for me. Sorry, doctors, you'll have to give me a better reason not to try other options.

I realize the doctors are just trying to be cautious and they don't want me to have any other complications, but when there are so few (effectively none) treatments that cure brain cancer, I would be a fool to follow their advice and avoid alternative options. Just because there isn't a clinical trial proving the validity of artemisinin, doesn't mean it isn't effective. The two are not mutually exclusive.

Moan & Gripe With Me

Last night, while I was in the shower, I started thinking about how goofy I am. Instead of being excited about the jog halfway around the lake, and concurrent walk the rest of the way home, I was disappointed in myself. What the hell? How backward is that. Instantly, I started laughing to myself and changed my thinking. Exercise is exercise. I flashed back to the days I was in the ICU. I remembered the paralysis on my right side. I remember not being able to walk more than a few steps without being winded and exhausted. I remember months of slowly training to start jogging again, and eventually, my first 10k. I have everything to be grateful about. I might get tired, and yes, that's disappointing, but I'm still here. I'm still nourishing my body with nutrients, sleep, exercise, meditation, and cognitive challenges like reading. My mind and body may be tired from time to time, but they are also the most healthy they've ever been. Sometimes, more doesn't mean better. I don't have to run five miles to get the same results. I just need to do quality exercise, breathe deeply, use it to rejuvenate my mind, and be grateful for the opportunity to work my body. There was a time when nurses told me I might never jog again. I have happily proved them wrong. When I'm down or frustrated, I have to remind myself that, if there's a down side, there's always an up side. I already feel better. Still tired, but much happier! And that's what it's all about :)

Last night Danny got a kick out of my study session. I've been reading the book, Cancer: 50 Essential Things To Do, by Greg Anderson and taking notes. I'm researching the way to navigate through this diagnosis, and learn from survivors. I figure, those who have fought the cancer fight, have learned things about attitude, nutrition, spiritual well being, and much more. The only way to be successful is to learn from others and use a whole body and mind approach. Anyway, I didn't realize he was taking a picture - he thought I looked "pretty cute" all wrapped up in furry blankets. Danny calls me a pillow monster. I somehow manage a way to turn our bed into a mass of pillows, and fluffy blankets. I like my nooks to be cozy and safe.

Just before bed, after I turned out my lamp, I stretched out, closed my eyes, and pictured my body hovering above. I just wanted to picture my body and see what it looks like in my mind's eye. The moment the image appeared in my mind, I noticed there was a light blue, and medium turquoise blue color surrounding my body. It morphed and phased into white light, then pale blue, white, pale blue, finally resting on white as it surrounded my body. The colors oscillated around the peripheral of my body - with no particular section of interest. It was really interesting. It felt good. It felt positive.

I believe that I can make myself healthy, with help from western medicine, alternative treatments, nutrition, spiritual well being, stress regulation, exercise, attitude, and enough sleep. I'm realizing that there's a lot of dedication needed, but it's all for a great purpose, and it helps me excel in all areas of life. Sure, I would love to be sipping on a mammoth goblet of red wine, nibbling on truffle-infused sheep cheese, but seriously, who cares (and someday on a special occasion.....). We can't do everything we want, eat whatever we want, and have whatever we want. That's life. The most important thing to remember is that I have the opportunity to earn my health, and each time I earn something, each time I meet a goal, I'm fulfilled and proud of myself. I just have to give this more time so that I end up looking at this as a lifestyle and not a diet or temporary thing. There will be times when I can take it easy, but I need to earn it. This whole body approach is proven to improve overall health, and that's my goal. I have to stay focused and enjoy the positive effects of the changes in my life since my last MRI. My skin is clear, my weight is down to 140. I'm more calm, and my headaches are minimal. Of the 43 days since making these changes, I've only had 3 or 4 days of headaches. That's amazing.

This diet is not what most people choose to do with their lives. It's quite extreme. But, unfortunately, it's how we should all be eating. I wish it wasn't the case. I wish we could eat sourdough, homemade pizza, jelly, cookies, and all the yummy, white carb, white sugar foods that taste so delicious. The sad truth that no one wants to acknowledge (because it sucks) is that sugar (other than in whole foods) is very bad for you. White flour is very bad for you, white potatoes are bad for you, and table salt is bad for you. If there are ingredients in your foods, you should try not to eat them. Foods should be coming from the source. The problem is that people are busy, or tired, or it's expensive, or whatever. Usually, it takes someone getting sick to change their ways. Sometimes, even then, people don't change. I'm not saying that I can cure this brain cancer just with food choices. I wish that were true - and who knows, maybe I could, but the point is that we need to give our bodies a fighting chance. A platform to succeed. Even if you can't seem to give up all of the bad stuff, just try to cut back. You don't have to be as extreme as I am. Start small. Choose oatmeal over cereal. Choose a spinach salad over iceburg lettuce. Choose a quinoa salad over a potato. Choose brown rice over pasta. Choose steamed broccoli over honey carrots. Choose vegetable soup over clam chowder. Avoid the bread basket. You always have a choice. You DO have the will power if it's important to you. Make your health your priority. If I can do it (even though I moan and gripe), you can do it too. Moan and gripe with me!

My Own DNA is Fighting Me

Tomorrow is the fifth week since the second brain surgery. I'm growing exponentially. In fact, I can't believe how much I've grown. When I was in the ICU for the week during and after the surgeries, and I was starting to re-learn things I was trying to brush my teeth with the wrong end of the brush. I couldn't grip silverware, or if I could grip it, guaranteed it was the with the wrong end. I tried to read a sentence for the speech therapist and out of eleven sentences the only thing I could recognize was the word "orange." It was absolutely bizarre. I could recognize that the page was full of words, but I didn't understand what they meant. That was a shattering moment. I would lay in my bed in the hospital trying to read the posters on the wall. I would practice over and over trying to figure out what written, "University of Washington Hospital." I would try to sound out the letters, one by one.

I had been feeling depressed before I went out for our walk today and that's when Danny reminded me that I'm still pretty fresh out of the hospital. He reminded me that with my personality having to slow down, take naps, avoid work, limit stimulus, basically I feel like I'm being punished. I thrive off of multiple stimuli. I love a good challenge, and yet I can't hit this head-on in the same fashion that I normally would. I would probably just tackle my recovery like a job and bulldoze through it. Unfortunately, that is the absolute opposite technique that I'm supposed to use. I'm already feeling guilty about not being back at work, and that alone stresses me out! It's almost like my personality is attacking my body and hurting my progress. Just like it was explained to me by Dr Silbergeld, I have tumor cells in my brain that are attacking my brain. The tumor cells are created by my own DNA. So my own body is fighting me.

Mini Stewie

Two days ago, as you can imagine, I was thrilled to find a Mini Stewie in my garden (Stewie is about double the size. I don't know if it shows between the photos from the two posts). Here's a few photos. As you can see, I went a little camera happy.

Is he the cutest thing in the whole world?!?! Well. He was. Sadly, I found him dead in my garden when I got home from the speech therapist yesterday. We believe the neighbor's dog attacked him. Mini Stewie then ran through the fence and into my garden, where he died.

The worst part is that I was so excited when we got home that I was looking for Mini Stewie and I found his dead body. I loved him. It's amazing how much you can love something instantly and become attached in less than 24 hours. I was so devastated yesterday that I couldn't even bring myself to get on the computer.

Yesterday, while I was mourning for Mini Stewie it occurred to me that just because you love something, like the bunny, doesn't mean that it will live. I hoped that the bunny would be safe around the neighborhood, and grow old to have Micro Mini Stewies. Just as I was hoping to enjoy Mini Stewie for a long time, I'm realizing that my whole life is going to exist on hope. I hope in two months I'll have a clean MRI (and then the next MRI after that, and that after that). I hope that I won't need radiation and chemo therapy. I hope that the rest of my existing tumor won't grow fast. I hope that I will beat the odds for the seven year average. I hope that I never have to spend another week in the ICU. I hope. I hope. I hope. I guess that this is my life.

I realize that wasting time worrying about the "what if's" in my life is just what it is, wasting valuable time, but at the same time I'm human. Of course there will be times when I'm going to worry. Maybe I'm just looking at the word "hope" with the wrong connotation. Maybe I'm starting to associate hope with fear. I don't know. I just feel so vulnerable.