Chasing My Sunset

 

    New Years Eve I arrived home from work with just enough time to grab Steve and the dogs and get to Brighton Rec in time to watch the sun set over the lake.  I wanted so badly to watch the sunset to say goodbye to this crazy year.  We arrived just in time to run/walk along the path until I could get a clear shot of the lake and the brilliant sunset reflected on the mostly clear ice.  

    Much of my life I feel has been "rushing towards an event",  especially when the kids were young and we always had at least 10 events a week.  I was always overbooking myself, I didn't want to miss anything, I wanted to try everything I could that sounded fun and interesting.  My friend Shalla even cross stitched me a t-shirt with a Large "NO" and then a list of ludicrous excuses why I was unavailable to do something, like "I have to shampoo my cat" or "that's my totem pole carving class night".  I think I have passed it on to another friend who needs those excuses now.

  

    To update on current events, I saw Dr. Mackler yesterday.  I went in expecting the final lab results of the DNA testing of my gist cancer and expecting to be put on Gleevec, with just the amount they were going to use being in question.  I had a great talk with the social work nurse last week about how many patients she personally knows who do well on Gleevec and she even gave me a good perspective change.  She said not to focus on the terminal part of things as I go forward.  She says I am a long way from that stage and it helps to instead treat the cancer like a chronic disease.  Lots of people have chronic diseases that they have to work through and take medicine with side effects, while they continue to live their best life.  This thought really cheered me up and I felt less sad and much improved in spirits after talking with her. 

     However the doctor did not have the expected news, nor could he offer much in the way of treatment options.  He went into great detail about the genetic mutations that cause gist cancer and how the two most common mutations both do well with the Gleevec helping to prolong life.  I unfortunately have the very rare third mutation (Steve says he knew I was 1 in a million), that does not respond to the Gleevec and is so rare that there is no drug or treatment for it.  The Dr. said the best two options I have are to try a second tier cancer drug that may slow it down, but will have harsher side effects. Or Dr Mackler had consulted with my Gist oncologist at Karmanos, and after looking into what research might be going on for my cancer, an oncologist with the National Cancer Institute in Washington DC has been found to be looking into treatments for it.  With my permission he is forwarding all of my case information to the NCI and they will review my case and decide if I am a candidate for study.  This process may take awhile and Dr. Mackler is willing to give them 4 weeks to decide before trying one of the second tier treatments.  Once I start treatment with Dr. Mackler I will no longer be a candidate for research as the drugs I will be on will contaminate the study findings.

    So we wait, again....I have no good answers.  I have tried to stay positive, and I have tried to put my best foot forward, but oh my friends it is so hard when they don't give you anything to fight with.  Everything I read on Cancer is about fighting it and working through the pain and sickness and discomfort of chemo and radiation and surgery.  I have nothing, I have the bare glimmer of hope that maybe there might be something that will slow it down.  I am sinking in the quicksand and they have told me to wait and just keep living as best I can like normal.

 

    So I am chasing my own sunset my friends, I live for this moment, for this eye-blink of time.  I can no longer count on years.  Let's just focus on this one year and what I want to see, accomplish,  and work towards in this year.  Love to all my family and friends, I will continue to Live, Love, and Learn with the time I have left.