Tuesday, January 27, 2009

On to the Next Phase

If you have not gathered by now, my life with NF2 has become a series of phases over several years. I often consider this rebirth as occuring in late 2004 after the radiosurgery. That is when things really became serious and I was confronted with making a treatment decision due to very substantial growth of one of the tumors. The radiosurgery that I held so much promise for did not go as smoothly or as easily as planned unfortunately. As a result, I was left with some devastating side effects I had to learn to adjust/adapt to.

But when reflecting back on it deeper, my transforation dates all the way back to July 1999 at my diagnosis. Even though though the events since 2004 dealt me a heavy blow, initially there were the phases of acceptance and learning to survive being different (as I lost my hearing).

All this has been emotionally and physcially taxing and have taken their own time to heal. With a good handle on the physical and mental challenges now, I am able to focus on the next steps (fundraising for research and alternative treatments).

So I have tried out both radiosurgery and brain surgery. What else is there?

I am not to the point of desperation yet where I feel the need to try out drugs in clinical trials or chemotherapies. Call me selfish, but I am doing well enough that I do not want to offer my body for experimentation. Having gone through cancer treatment years ago and having experienced difficulty with different medical drugs, I just do not want to put myself through anymore for a reason which would not benefit me personally. I know that sounds bad but I rather run a marathon than be a martyr.

The other option which has come to light over the past year is a supplement from New Zealand which a researcher has discovered to suppress NF tumors in mice. (Propolis Bio 30)

I first read about it back in 2007 around the time of my surgery. Since then, at least 50 people in the country have been giving it a try and have not experienced any side effects. The only reactions have occured in patients allergic to bees.

So to play it safe (as I have seen the result of horrible allergies and have had negative reactions to certain drugs), I scheduled a bee allergy test which was performed yesterday. I was tested for different strengths of 5 different bee venoms. My prayers were answered as I did not have a reaction to any of the venoms. Therefore, I am very happy to report that I can also begin taking the Propolis Bio 30.

There is not enough information yet to know if the supplement will actually shrink the tumors (although in some of the mice that did happen). The point in taking the supplement is to keep them from growing further and thus protect my quality of life by keeping the tumors from compressing critical structures (resulting in negative side effects). It could very well be like every other option.....What works for one person, may not work for the next.

Yet at this point where I stand, I have nothing to lose (except money ;o) ) if there are not any serious side effects from the supplement. What I have now is worth preserving! It sure puts life into a proper perspective. So currently, I am on a path to be as healthy as possible. I just gotta kick the sugar habit like the chocolate chips I ate today! LOL At least they were dark chocolate which has antioxidants that are good for you. I gotta stop using that excuse now that I get a healthy dose of antioxidants in actual "good" things for my body (berries, purely pomegranite juice, green vibrance drink, and FRS liquid and sport chew supplements). I don't NEED the chocolate now but it sure tastes fine!

For more information on these supplements, visit the following links:

FRS energy

Green Vibrance

Purely Pomegranate

Propolis Bio 30: Manuka Health Industries

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