Wednesday, December 31, 2014

SHAPE Magazine Interview

Over the holidays, I was contacted by one of SHAPE Magazine's associate editors about an article she was writing about the language we should use when we talk about cancer. If interested, you can read the article below. The hard part in being interviewed is that things always come up later, things you forgot. When I talked to Dan about it we discussed how in the past I used a lot of "war" terminology. I always used to feel like I was in battle, that my body was waging a war against cancer. I have since changed my view. It was too exhausting to think that I may be "fighting" for the rest of my life. I knew that I didn't have the stamina. Fighting is exhausting. Now I see cancer as unhealthy cells that may be in my body. I see them as damaged, bruised, weak. But I also believe that my body can heal the residual cancer cells in my body, or perhaps turn their activity "off", with my immune system's help. I don't completely know if that's a scientific fact, that cancer cells can differentiate into healthy cells, but I like to think it's possible.

Regardless of how I look at it, we all have different perspectives and they're all right. It's hard enough as it is to imagine us all having to feel the same way. I think that whatever terminology that's comfortable to you is how you should describe the experiences on your journey.

I was shocked to be contacted, and it was an honor to be interviewed. Happy New Year you guys. I love you all.

Monday, December 15, 2014

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'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.)

Monday, December 8, 2014

Pick Positive

Wow, life has been in the fast lane lately, I havent even found the time to post, but here I am. I'm back!

As I rode the train to the airport this morning I thought about how much my life has changed. That it was put on hold, due to the tumor, causing a necessary pause. A scramble then a freeze. And now, like the thaw from a very long winter, my leaves are unfurling, and I may even flower this year. Do I still get scared? Hell yes. Every day. I have all the same cancer fears, but the stubborn voice in my mind says, "Don't borrow trouble." I want to live until I can live no longer. I want to laugh, and dance, and read, and hug, and learn, and share, until my last breath. Life is so freaking fun I can't even stand it. And people are so nice. Why focus on the negative? It's so boring. 

So now I'm at the airport meeting my buddy Linden. I think I've mentioned her before, but can't remember, she's fighting an AA3. We're headed to San Fran to check out a new cancer research facility. Although, I don't know if I can talk about it much yet, as it isn't up and public. So we'll leave it at that. Suffice to say that there is more hope out there than people can even imagine. So keep fighting, keep smiling, keep those negative voices down. 

It's another beautiful day.

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