Change is Coming

We are on the cusp of serious changes in the brain cancer world. Serious changes!! I can't even believe how fortunate I am to have been diagnosed during this time. Imagine, the first fMRI (a scan to navigate the brain before surgery so that doctors can avoid healthy systems and only cut out tumor tissue) was in the early 1990's. Eeeek! I'm 10 years older than the fMRI. Yikes!! If I wouldn't have had an fMRI for my first brain tumor resection, I could have come out with the permanent loss of my speech, and motor movement. Holy cow would I be a different person. A lifetime in a wheelchair? A permanent inability to speak? A permanent inability to read and process language/speech? In ability to communicate? Would I have essentially been a vegetable? Ugh. That makes me feel viscerally ill, then immediately relieved. Thank you for those who have blazed before me. And now, it is my duty to help others who may come in my path.

I can't share the super secret details about this new badass cancer fighting company out of San Francisco until it launches in February, but please know that things are about to change. This is going to blow your minds. I'm not saying this to be a jerk, or to just dangle my secret, I'm saying it because it's going to bring more hope and save more lives than anything I've ever witnessed regarding cancer care.

If you're dealing with brain cancer, you know that not much has changed in treatment for decades and decades and decades. Why? We know, YOU know that so many things can help fight cancer, and yet brain cancer has a horrible cure rate - in fact almost all cancers have a horrible cure rate. Why is that? We know that it isn't because there aren't things that work. Is it because it's hard to institute change? Because it takes forever for clinical trials to complete? Is it because clinical trials usually only use one treatment, when it's clear that to fight cancer you need to have multiple cancer fighting modalities? From my own research, and now for the past year with astrocytomaoptions.com's research, I know that there are all kinds of things that fight brain tumors. But why is it that the research is published, yet not instituted? And why don't we hear about it? Why aren't doctors familiar with what works? With off-label drugs, and diet, and nutrition, and clinical research? And meanwhile people are dying. They're DYING. For whatever reason that they don't help us, be it their fault or not, it's unacceptable. And the only way that things will change is if we institute change ourselves. Reference the fight against HIV/AIDS. They demanded change. They marched for it. They screamed at the top of their lungs because people were dying. Why aren't we doing that? Why aren't we pissed?! Oh wait, we are pissed, but it's complicated. We're tired. We're confused. Our disease afflicts our brains, our epicenters. It effects our energy, and our thought processes, our reasoning, and our logic centers - it's different for everyone, but ultimately, it makes it very hard. We don't know how to make the change that we want to see. But for the first time, I just caught a glimpse of hope about a new system of treatment, and it's going to be public in February, along with the trailer for a new documentary about brain cancer, featuring Ben Williams, PhD., also available in February. (If you're not familiar with his amazing story click HERE.)

I hope this trailer excites you as much as it did for me. Complete goosebumps. And I hope it ignites a fire. Everything is culminating in February, it's all coming together. It's time to take charge, and start demanding change, and I can't believe I'm alive, and part of this movement. Albeit a small part, but still a part. Please let me know what you think about the movie.

Enjoy. (Click image.)

Cocktail of Treatments

I am happily full. A change from the past few days. It's hard to avoid eating until 11:00 am and stop eating at 4:30 pm. But, I'm okay, I survived again, and happily, I just crammed an apple and a handful of mixed nuts into my mouth. I'm sipping on my broccoli tea, listening to Pearl Jam (it was on the radio). It is so nice to eat an apple, they're so crispy and delicious! YUM. Ambrosias are my favorite, but I also love a good pink lady or honeycrisp.

I have a few minutes before I need to jog around the lake, the long way, and swing by PCC to pick up my  whole milk and a healthy style Gatorade (the real stuff is full of synthetic sugar and food dyes). Today I take my 20 curcumin pills & 5 piperine, then twenty minutes later I blend special sprouts along with 30 pills of xymogen (broken open into the blender) and a little bit of water. I take that drink with whole milk or heavy cream, then I chase it with an electrolyte drink that helps smooth the tummy.

Last week when I was taking the drink, my parents came by and I had them try it (along with Danny). It was hilarious! It's the most horrid drink I've ever encountered. About an hour from ingesting it causes a crazy laxative effect (GROSS), and my dad and I were passing each other back and forth up the stairs to the bathroom. It's completely gross, but it's effective and that's all that matters. This is the special drink that our friends used to eradicate their brain tumor.

It is imperative that brain cancer fighters get together and share knowledge. We can save lives. People are surviving. There aren't very many because most follow their doctor's advice with standard of care even when it's proven to have little to no effect on survival. There are various treatments that have much more success than standard of care, and the information is out there on tumor blogs. Never give up. Don't be afraid to make your own path. You have to fight for yourself, fight for your life. If you come into opposition, which is very likely, stand your ground. I believe that my radiation oncologist, if he was diagnosed with the same cancer, would start researching everything he could to optimize his chance of survival. He is outspoken, extremely intelligent, and believes he is an expert in his field (which is true). Something tells me that he dives into things head on, and he would quickly become an expert on how to save his own life. But guess what, he doesn't have brain cancer and therefore does not have the energy or time or desire to devote his time. On a related note, here's another quote from my current book:

"The current medical system does not provide the best possible treatment for cancer patients, and especially not for those with brain tumors. In my own case, I would likely be dead if I had followed the advice of my neuro-oncologist. My prognosis was dismal. Rather than simply accept this small chance of success, a patient is better advised to look beyond the standard protocol for additional treatments. Different treatments have different mechanisms of action and the laws of probability imply that the more treatments a patient uses, the greater the chances that at least one of them will succeed." - Ben Williams (Surviving "Terminal" Cancer)

I am just shocked by our cancer care in the United States. Everything is dictated by our government, specifically the FDA who favor pharmaceutical companies and their multi-million dollar trials. It's important for cancer patients to remember that just because there hasn't been a trial proving efficacy, that doesn't mean a treatment is ineffective. Cancer patients are taking their lives into their own hands, choosing to save themselves. If all of us cancer fighters band together and share knowledge, which they are doing, we can save ourselves. Screw these doctors that aren't trying to save our lives. We will just do it ourselves. I will not give up, no matter how many headaches, stomach aches, pain, frustration, exhaustion, or sacrifice. I will not give up, even though sometimes I want to climb under the covers, crying, with a 10 lb bag of peanut M&M's and a pint of Karmel Sutra from Ben & Jerry's.

Life makes me want to cry when I think of everyone dying because they can't stand up to their doctors. I am not saying that the doctors are bad people, they're just ignorant. They don't have the time to research the various options out there for cancer patients, and trust me there are many, many options. I'm continuously reminded that it's important to do a cocktail of treatments that work synergistically. It's just like health. If you just cut calories, you'll lose weight but you will lose muscle mass and you won't alleviate the initial problem of why you gained the weight in the first place. It is widely known that you need to change your diet, your life style, your exercise routine, and your mental state to successfully keep the weight off. There's no easy answer in life, success comes from a whole body approach and I believe that's true with everything.

Here's a photo from yesterday. Although my suet has not attracted any birds, my sweetheart neighbor Beth Ann moved her bird feeder out so that we can both enjoy the feathery cuties. Maybe it's time for me to take Elliot's advice and put something I like underneath my feeder. If only there was a way to hang it above our car, that would be perfect :) I bet I would quickly have a Hitchcock moment.

On another note, today is the anniversary of our vow sharing beneath the Eiffel Tower. (Our actual marriage became legal in July, when our friend Clay signed our certificate as a justice of the peace.) What a miracle of a man. Dan is a main reason why I work so hard, fight with such effort, and yearn to live. He treats me with such kindness, showering me with compliments each day, telling me how much he loves me constantly, loves me when I'm bald and bloody, and is always attracted to me despite obvious ailments (like staples on my head or stitches on my breast). He is my perfect man, and I am so grateful that I get to spend my life with him! I don't know how I am so lucky, but I will not take it for granted. He is my version of perfect. I'm so glad that I didn't settle for anything less than Danny. Now, I just need to find a way to enjoy his company for years and years and years. Danny literally knocks my socks of in every way. What a gift!