Disappearing

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• A few days ago, I met a new doctor.  On August 13th of this year, the FDA approved a new drug that has had success shrinking tumors and cysts that are generated by the genetic syndrome I was born with, Von Hippel Lindau. (VHL).  Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in up to 10 parts of the body.  I inquired of my nephrologist (kidney doctor) about the drug, and she has recruited all of my specialists to research this new medication.  They all met with an oncologist, as apparently, this drug is classified as a chemotherapy drug.  Since the medication in brand new, it will need to be approved by my hospital’s pharmacy to bring it in.  I would be first patient to use it in their system.  It is very expensive.  That is the last hurdle I need to cross, before I will be able to start taking the drug.  The team decided that it is worth me trying, if it can shrink tumors.  I currently have 5 new tumors growing, which is alarming since I had several removed in a surgery earlier this year, in February.  I still have not fully recovered from that surgery.  This new doctor I met with told me that a big reason that they think I should try this new medication is the danger of having another head surgery.  According to my neurosurgeon, I almost died during the surgery on February 3^rd.  This was news to me.

  It was alarming.  I knew it was a tough surgery, but I had no idea that it was that difficult.  It put some things into new light.  My hospital stay dragged on for a full month.  It seemed much longer.  During my stay, I experienced hallucinations, severe paranoia, and intense fear.  In other words, I was crazy.  However, much of that time, I now realize was during the first few days after my surgery.  Like all of my previous surgeries over the last 35+ years, I always remember coming to in recovery.  This one, I do not.  Instead I remember a long convoluted conspiracy to destroy my life by an underground terrorist group that had tried to recruit me, but turned against me when their psychotic leader rejected me.  I was desperately scared, because I was helpless in all aspects.  Because of Covid-19 protocols, I was alone.  There were no visitors.  Eventually, my family was able to see me on a limited basis, but at the time, I was waging an epic battle for survival in my head against this underground force, and apparently, in reality.  There were several points, where I was in a position to decide to stay and fight, or completely give up.  I remember giving up in these visions, and feeling peaceful and calm, but still with an underlying fear.  I began to consistently surrender in these battles in my head, until eventually, I began to come back to reality.  I never fully came back, until about the last week during my stay.

  Except that I really haven’t.  Those hallucinations are now imbedded in my mind as solid and very real memories.  I find myself often filled with fear and a disturbing feeling that I can’t trust people and that there are at times conspiracies working against me.  I have to fight off these feelings.  I mean, why would there be a conspiracy against me?  Why would anyone bother?  Now that would be crazy.  I have not yet processed this near death news, nor do I believe that there’s really anything to process.  I cannot change what happened, but I am now wondering if I was giving up, but somehow survived anyway.  I have been filled with dread ever since.  Perhaps I’m living a life, I no longer want to live.