Working With A Governor

You know what's crazy? You get diagnosed, you go through surgery, you recover, then the real test comes in living your life knowing that you have tumor cells in your brain, that the tumor (always) comes back (according to your doctors) then you start over again. Each time they dig in your brain you hope you wont die. You hope that the majority of your brain, the stuff that makes you you, will remain after they fiddle. That you won't be too damaged. You know before hand that you'll never be the same, no one ever is, but all you can do is hope that it's a minor shift. You go home, you fight, you research, you add treatments, you change your diet, you work incredibly hard. And at the same time, even though your whole life has been derailed, all of your dreams put on hold, except for a twinge of sadness here or there, you're just thrilled to be alive. You live your life revolving around scans and treatment, knowing each scan could be all it takes to devastate, that each treatment may not be enough. You battle fatigue, you battle the horror of seizures. And all the while, through it all, you're just happy to be capable of reading, and writing, and walking, and running, and laughing, and recognizing the beauty of each moment, of everything around you and most of all that you're able to fight. Cancer has a way of stopping the world from spinning. Everything happens at once, then not at all.

Tomorrow morning at 8:00 am is the MRI scan. Again they poke, jerking that needle into my vein, readying my body for the contrast dye that will tell all of my brain's dark secrets. Each MRI, each scan, is the biggest test of my life. Essentially, I live each day studying for this moment, for each exam. I remember my parents telling me when I was in my 20's, with admiration, that I was the consummate student - that it was my lifelong passion. We just never knew that I would be attending my own university, earning my own solitary degree. A degree in my body, my health, my survival. I love learning about the facets of tumors, of tumor life, how to outsmart them, to jump the hurdles. Sometimes it's scary. Sometimes it makes me viscerally ill. Regardless, I continue. My only wish is that I would have more energy, that my brain wouldn't shut down. Since the first brain surgery my body has a governor, and there is nothing I can do to change it. I work within specific boundaries that my body dictates. You guys know I fight it, pushing too hard at times. I keep hoping that just like with a muscle, all my mind needs is exercise to gain endurance. Doesn't seem to work that way though.

Sorry for the delay in my email responses, I'll probably be backed up for the next week - I'm still having to take daily naps to catch up after all that research. Please send a second email if you have an urgent question and I'll do my best to get back to you. For now, Dan's sneaking me off to hit golf balls (a close second to my favorite - the batting range) to de-stress.

As ever, but profoundly obvious, my fate is in the hands of the universe. Let's hope I've done enough to keep that parasite at bay.

The Most Poignant Riddle

Good morning. Been resting up from my worcation. I went to my parent's house to sleep, and meditate, and watch trashy Bravo TV (we don't have television anymore), but I got trapped in the vortex of the tumor world. Researching to make sure that you're living right, is much more satisfying than any other pastime. The tricky part is that my brain gets fatigued pretty quickly, and by Saturday it was fried. That morning Dan and I drove to the senior center where Grams lives. We brought her some goodies, and pushed her around outside. As we were driving home I had a mental lapse, I literally couldn't remember where I lived. Weird. It took several minutes for me to remember the image of our home. My mental Rolodex flipped from house to house, city to city, and finally I figured it out, but it was scary. Several moments of dementia. I don't know if it was a seizure thing - it didn't feel the same - or just lightheadedness from the CR, or worse yet, tumor growth? It scared Dan. It scared me.

I'm chalking it up to mental exhaustion. No need to panic. The MRI is near, and results will be available next week. We will know what's going on in my brain (to a certain extent) soon enough. I kind of don't want to know what's going on in there. I'd rather just keep going along with my current path. If the tumor is growing again, I don't know what my next step will be. There are a few promising clinical trials out there, and some positive off-label drugs I could add. I know that if the tumor is growing the next recommendation is radiation. I also know that as an IDH1 mutant glioma fighter, radiation is said to be more effective. That's new information that has recently been coming out in the research, anyway. It's a double edged sword because it's always great to have more treatment options, but at the same time I really, really, really don't want to do radiation. So, we'll see how it goes.

In the meantime, after last week's research, I've decided to go raw vegan for a bit. It's mostly veggies and some fruit. I realize that there are all kinds of diets out there for cancer, and brain tumors; the RKD, vegan, vegetarian, Paleo, caloric restricted, macrobiotic, you can do the Gerson therapy, or do the alkaline diet, and you can find someone who has survived from each one, even survivors who have never changed their diet and still live on SAD. It's kind of a crapshoot. There is no surefire diet to stop brain cancer, or any other cancer for that matter. These molecular aberrations will not respond to the same diet, nor the same treatments. Cancer may be the most poignant riddle of all time. But with that being said, there are direct correlations between elements of diet and tumor growth. It has been proven. For example, IGF-1 in animal protein, artificial sweeteners, sugar (of all kinds), artificial dyes, nitrites & nitrates, MSG, just to name a few. So what do you do? Do what feels right. We are all walking this walk together, but at the same time we have to use our own legs. I love learning from you guys, and I appreciate you sharing your knowledge and wisdom. I wouldn't be as far as I am without your help. When I share things, I don't expect you to jump on my bandwagon, I just want to give you the chance to check stuff out and see if it helps your situation. The IGF-1 issue in animal protein was definitely a game changer in our household. Thank you for all of the comments over the past several posts, the dialog was exciting, and very instrumental for Dan and I to adjust our lifestyle.

In one of the comments there was a mention of a couple of documentaries, the most profound being (in my opinion), Eat, Fast, Live Longer. If you enjoy nutritional documentaries, or just want to get your mind blown, please check it out below. (If you have any problems viewing it CLICK HERE.)


Eat, Fast & Live Longer HD by limoslight

Thanks again for all of the continued help as I navigate this curious journey, I can't measurably express my gratitude. There is such power in numbers.