Thursday, March 26, 2009

I'm typing something in here so I can learn to use this crazy "appliance".
I had been thinking of starting a blog for Hispanic women hikers/mountain climbers over the age of 50. I never did do it because I would rather be hiking! Now I can add to my profile...."who have a meningioma brain tumor". So far it seems that my meningioma tumor is treatable and I am scheduled for Gamma Knife on April 8. After doing my homework (research via internet) I sometimes feel like I am the medical community's worst nightmare......I know just enough about my disease to be annoying. But I also feel it's my right and privilege to assert myself on my own behalf. My neurosurgeon initially told me that surgery is my best treatment option and explained the risks. I had researched both Cyber Knife and Gamma Knife (with a lot of help and support from my wonderful husband). So, I was proactive and suggested both procedures as alternatives to regular 'ole REAL KNIFE surgery. My case was brought before both a Cyber Knife team and a Gamma Knife team at 2 different health facilities. I was accepted by both-YIPPEE???!!! The Cyber Knife facility is in a strange city more than 500 miles from my home but seems to be a top-notch facility. They recommended the surgery with Cyber Knife follow-up to get the entire tumor OUT. I still haven't met with the Gamma Knife surgeons/team so I'm still collecting info in order to follow through with that procedure (which is in a familiar town where I have family, support and not as much financial stress). I wouldn't mind hearing from other meningioma patients who are or have been in a similar situation. I would like to hear outcomes and emotional thoughts. At first, upon diagnosis, I was terrified that I was going to die soon. Now, it seems like the medical community doesn't think I'm in any danger and I certainly don't have any symptoms (except for being a little dingee and scatterbrained-which may or may not be related!) Sometimes I feel like I don't deserve to be concerned because I am so fortunate to have such a "friendly" tumor. If I have to have a tumor, it sounds like I have the best one to have, in terms of recovery. And the tumor is located in the left occipital lobe and is well formed and doesn't seem to be invading anything important, other than a little pressure on the CPU (brain). One of my treatment options was to wait and watch. I have too many mountains to climb to wait and watch....I want the "alien" out of there so I can go on. The mountains are calling me............