First, I am here. My name is ***, and in June of 2010 I was diagnosed with glioblastoma multiforme. A friend of mine just tonight pointed me to your TED talk, and I found it fascinating. I wanted to offer some of what I’m doing, in the hopes that it may be useful.
I’ll describe a number of things that are part of my perfect cure, but for the most part they are not really separable as individual ingredients, but rather merely individual facets of the whole. I expect that this may make some sense to you. So, though I describe them somewhat as component parts, this is only because a description of the interconnected whole is more than I want to attempt at present.
My tumor was extremely operable and the few experts I consulted in the first few days recommended surgery. I chose it, based on these recommendations. I say “I chose it”, because it was clear to me that the best way of avoiding turning into a disease was to be a person and to choose to own my situation and what I would do. The surgery went well (roughly golfball sized, and in a good area for minimal impact to brain function. I don’t notice any difference from before.)
I very much agree with you about the potential for a cancer diagnosis to become one’s definition (as seen by others) and one’s identity (as seen by oneself). This was clear to me from the beginning, and so I quickly built up a reflex to reject any words or attitudes that equated me with my cancer. Similarly, something that seemed profoundly wrong to me was that I was shown mortality statistics over time for some population of people with GBM and I was told that this information predicted my future. I am an computer-design engineer and am therefore fairly well educated in math and science, and the fallacy of predicting the future of an individual from collected statistics for a population was glaring to me. Not only were there problems with assumptions of causality, but also problems with unevaluated differences between those in the population who had survived and those who hadn’t – did some smoke? did some not actually want to live? so many questions.
So, something I did very early was to decide that statistics about others had no predictive powers over me. And, as part of this, I decided that the people I recruited to help me in my own Healing Path, which is what I call it – I focus on the healing, which is the positive, rather than the disease, which is the negative – would have to pass a test. They had to believe that they were helping me to heal, and not merely to be shepherding me through a mill that randomly would claim some percentage of passengers, per the statistics. This led me to a team of an Oncologist and a Radiologist. My Oncologist said, in my interview of him, “I don’t believe that different types of cancer are completely different from each other. We’ve learned so much about how to treat all kinds of cancers, and there’s no reason we can’t take all of what’s been learned and apply it to helping you.”
I read a lot. Friends who are cancer survivors poured books upon me. But something that was very important to me was that I was going to focus on healing and living, and not on understanding disease. I set up an equation for myself that putting thought and energy into the disease only made it stronger. Putting thought and energy into healing and living was what I decided to do. (Even though I feel compelled to write very quickly here, I am choosing my words very carefully, as I have done throughout this process, even when just thinking thoughts quietly and to myself.)
I am not a religious person, but I do believe in a higher power. My name for it is the “Infinite Spirit of the Universe, source of all beauty and love in the world”. I cannot account for love and beauty without this higher power. To my mind, this spirituality of mine is parallel to that of many organized religions, and whether others agree with me is not of importance to me.
I do believe that we are able to influence the future in ways we cannot understand by expressing what we want and “putting it out into the universe”. So, I decided that I would focus on the positive of my Healing Path.
Okay, I’m going to need to be more brief with more stuff, or I’ll end up writing a book here.
Gratitude: I believe that gratitude is part of what gives life meaning, and it seems to me that living == healing, and therefore I immediately started and still talk and think about who and what I am grateful for.
Visualization: Particularly during radiation therapy and chemotherapy, I’ve used my imagination to see the therapy helping me to heal. I visualized my white blood cells as individuals teaming up with my radiation to make it most effective. They used scanners to spot individual tumor cells remaining in my brain after surgery, and highlighted them as on a monitor. Then they manned focusing mirrors to slightly deflect the xray beams to concentrate them on these cells, which would fall to dust. The white blood cells then, when the beam was switched off, would sweep up the remains of these cells and remove them. Each time the focused beams got a tumorous cell, they’d witness its destruction and then high-five each other.
During chemotherapy, more visualization. I used my breath, as prana in yoga, to help me heal. With each breath, I sent my breath to the area where the tumor had been. Breathing in, I breathed in white balls of health and pink balls of love. On an exhale, I breathed out black balls of negative energy and disease.
I told lots of people – family, friends, colleagues. I felt that keeping it secret only fed the negative energy. Shining a light on it put me in control and put the emphasis on the positive energy of healing. I created an email list and kept people in my life updated. This, in turn, helped them to know what was going on. And it helped them refrain from saying “everything will be okay”. I was working (and am working) to heal; it wasn’t (and isn’t) a matter of luck or a crap shoot.
One difference from what you said in your TED talk was that I chose to take ownership for what had happened to me. As my sister had done when healing from cervical cancer, I decided that if I had had a hand in inviting my cancer into my body, that meant that I had the power to do the reverse. (If I was merely a victim, then how could I be anything other than a bystander in what would happen next?)
Food: many, many things. I had already studied quite a bit about inflammation, which is a natural process in the body that cancer subverts. So, eating in a way that does not promote inflammation is what I do.
Resveratrol has been shown to be a powerful angiogenesis inhibitor. So, I drink red wine. This is also part of living.
Tea, particularly green tea. Stone fruits. Supplements.
I have gone on vacations. I don’t do it to cram them in lest I die, but rather to revel in living as a positive force for my healing.
Perspective has helped me in relating to others. If someone looks at me like I’m tainted, I say, “we’re all going to die, and none of us knows when.” This generally shifts them to being at the same level as me, rather than thinking that they were sure they’d outlive me. There is much mystery in life, and cancer is part of it. Cancer is not a certainty amidst the mystery of life.
Okay, I seem to be slowing down, so I’ll take that to indicate that I’ve covered the most important points. Something quite interesting to me was to see your list of your cure. Mine is the same list, except that my spirituality is different and mine doesn’t include homeopathy. Fascinating!
Thanks for the TED talk, and for this project of yours. I love the approach of crowdsourcing parts of your healing path. Amazing!
My scans continue to be good, and I continue to enjoy life. I’m now working on a major career change. It’s life.