Wednesday, May 27, 2009

Watch-and-research?

I spent one full day reading medical research articles on DNETs. Luckily my sister goes to a university that has a med school, so I could access these articles. I found the articles I have been reading about DNETs being "stable and surgically removable." It is not that I am looking for negative information, but these articles did not answer my questions. I found new research that were case studies of people whose DNETs grew or returned. Ah-ha what I have been looking for. My tumor pathology was not exactly like the children in the original DNET articles. Mine seemed more complicated and my tumor has already showed signs of change. I now know a lot more facts then I have been told by doctors. I now have the information that I need to ask more questions. I even emailed one doctor who wrote an article and he responded answering my questions. I do not want to drive myself crazy with BT research, but I now have the knowledge to make educated decisions and ask educated questions. Reading about growing/changing tumors initially made me want to have the surgery for fear of it happening to me. But the more I thought about it the more I decided to monitor the tumor instead. Of course I worry about the tumor growing and being able to see it on the MRI. I continue to remind myself that I had symptoms before the MRIs showed anything. I know my body, as I always listen to my body. I will have surgery when my MRIs or symptoms tell me it is time. I am not going to rely solely on MRI pictures, but how I feel. Now I have to make sure I do not drive myself insane with looking at every little sign I have. But I am comfortable with my new decision. I am going to do what I am at peace with. I chose to live with my tumor until it needs to get evicted. Although I am at peace with my choice I also decided that I should seek counseling to live my life the way I want, not in fear of my tumor. This is going to be hard for me because I was never a fan of pouring my soul to anyone, but I need to do this for my mental and spiritual health. I need to work on the total being in order to live and heal.

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