Minstrels of Mischief

Sorry the follow up is late.  I often have a rough few days after my MRIs with all of the anticipation and energy drains surrounding it.   For my MRI, I Felt like we got some good news and some not great news.  The good news is my scan looks about the same.  There is no new tumor "mass" that is visible.  Hurray for that!  I am continuing to experience an increase of seizures and they are changing a bit in the way they are manifesting.  We have Increased my medication but it has not been successful in controlling them.  They are really draining and disorienting. The doctor and seizurologist are concerned.  We will look at other medications or strategies to try to keep them at bay.  The electrical misfirings  that happen during a seizure can cause additional brain damage.   Coordinating my eyes and getting accurate basic relay to and from my brain has become more of a problem.   The Drs. say my left eye is not syncing up with my right.  This probably is one of the contributing factors to my very painful headaches that I have constantly.  Also this combined with my balance issues and memory struggles has me flotting around like a moth sometimes.  Bumping and running into things intermittently as I go.  Funny picture.  Not so fun to live though. As we talked with the oncologist about my symptoms he reminded us that there has always been tumor there and it is there now.  The tumor can change and shift in a microscopic level that would not be seen on an MRI but I would feel it.   So even through the scan looked good, it is likely that some minuscule tumor changes to the tissue around the surgical site are causing increased seizures and vision problems.  As the oncologist put it;  "it would only take a tickle within that lining for me to feel and sense changes.  It wouldn't be visible on the scan but is probably happening."  We can only do chemo and radiation so many times and for so long.  While using those strategies might slow whatever is happening we will have to save that card until later.  I don't want my body to weakened by those harsh treatments anyway.  I also want to not allow further brain damage and would like to preserve my sight.  I'm not sure how to do that.  It worries me.  I feel like if I work hard enough and smart enough I can rewire and strengthen connections.  I just need enough wiggle room to stay ahead of the damage. I am determined to find ways to make this work though.  I am learning more and more about health of the body, mind and spirit.   I am trying to learn more about nutrition.  I have pursued daily brain exercises.  Jason and I are meeting with some of the drs. At Progressive brain rehab to get some outside help and insight.   Honestly, each day is a struggle.  Sometime just really hard, sometimes scary.  But I have beautiful moments within those days and I treasure those.  Just as I treasure you, my family and friends. I get frustrated with life's challenges but Even if I don't happen to like life's circumstance I do love being here and having the opportunity to learn and grow and hopefully bring some joy and comfort to those around me.  I truly appreciate your prayers and gifts of love and service and friendship.  Thank you for being there and for caring.   ~Courtney