Sorry for me being quiet lately. Just not much novelties to report. This is an entry about trying to decide on a question only a long-term survivor can have the luxury to ponder. I had my last MRI a year ago. actually, more than a year ago. November 2009 to be exact. Now its February 2011. The big question in my mind is: am I neglecting my disease by not getting examined? The issues coming to mind: MRI imaging is not a treatment, it will give me a heads up, should something come back. But then. Something coming back. inevitably means: bad prognosis. Recurring Glioma is pretty much a death sentence. Well, technically, Glioma is a death sentence. And so far I beat it. Here my question: what would I do, if an MRI would show, it came back? Have another surgery? I was incredible lucky to have such a devoted and talented surgeon like Dr Liau at UCLA. My life is almost normal, I am doing science (actually: just writing a paper) again and everything looking as good as one could imagine. Another surgery almost certainly would mean serious defects from the removal of additional brain tissue. Would I do it? Thank God this is a hypothetical question. Many would say: you are cured, you beat it for good, you can relax now and move on with your life. But if there are others in my situation, you may know what I am talking about: Being diagnosed with malignant cancer once and for all destroys this primordial trust in ones body. I am still scared to consider myself "healed". As if there was some magical bad spell in letting the guards dow. I WANT to stay aware, that bad things may happen again anytime. Just hoping that this awareness may be a magic to keep IT away.
I keep on drinking my magic Amazon tea "Cha Una de Gato". But I will not do an MRI anymore. It doesn't help, since even a good result does not mean it will last. I will just have faith&trust that I will live and not die from brain tumor anymore.
Maybe I should write a book about my time with incurable cancer. Diagnosis December 2004 Surgery February 2005, now february 2011, "rebirth-day" is only three days away (Feb 7th 2005) my "second birthday". Six years. And I was told: "a year, maybe a year and a half"
People out there, I am still here! Maybe I made it long enough to call myself "cured", but I am still afraid. And will be so forever. A price I am happy to pay for being still here. Life is too wonderful a gift, to not accept a price for it.
I keep on drinking my magic Amazon tea "Cha Una de Gato". But I will not do an MRI anymore. It doesn't help, since even a good result does not mean it will last. I will just have faith&trust that I will live and not die from brain tumor anymore.
Maybe I should write a book about my time with incurable cancer. Diagnosis December 2004 Surgery February 2005, now february 2011, "rebirth-day" is only three days away (Feb 7th 2005) my "second birthday". Six years. And I was told: "a year, maybe a year and a half"
People out there, I am still here! Maybe I made it long enough to call myself "cured", but I am still afraid. And will be so forever. A price I am happy to pay for being still here. Life is too wonderful a gift, to not accept a price for it.
Hello,
ReplyDeleteWe are a start-up company and are currently working on a new service to simplify how patients make medical decisions. We are specifically building a better tool for online access to the latest evidence-based treatment recommendations made by world-class neurosurgeons.
I would love to get 30 minutes of your time to help us understand your current problems in medical decision making. I'm not selling anything, just looking for advice.
Thanks,
Starr
CEO | iRapidConsult Inc.
starr@irapidconsult.com
www.irapidconsult.com
I just found your blog and would appreciate hearing about your diet. My husband was diagnosed with anaplastic astrocytoma grade 3 in Jan, 2011. He has a diffuse, low grade, infiltrative tumor. He had IMRT and TMZ -33 treatments. He is presently on TMZ 250mg 5/23 cycle. His first MRI post IMRT showed mild decrease in tumor and his second MRI in July showed more decrease in tumor. He drinks green tea, green smoothies with kale and flaxseed oil, no refinded sugar products. I am hoping that maybe his diet is contributing to the shrinkage of the tumor. Can you give me more informtion about what you think has helped you?
ReplyDeleteHi, Anonymous!
ReplyDeleteI should say, I do not keep a special diet. I am not miuch a fan of diets and , onthe contrary, I believe , one sould try to listen to the body and rather ask the stomach, what kind of food the mood of the moment is set for,. The bodys sense of appetite has evolved for a reason, and I believe it tells what the momentary needs are for: genereally: I try to stay away from ebnriched and all-too artificial food, drink lots of green tea, try to include some fresh stuff into my foodplan. Again, no diet.
I do exercise, though. Not too much but about an hour of bicycle every day (I ride to work with a bike, about 30 minutes one way). Thats about it , no big secrets. The only "magical" item on the list: I still drink that "Una de Gato" (Cat's Claw) tea I mentioned in an earlier post: about one cup per day, not too concentrated....