A New Dawn

This is the view from my back deck as the sun rose over glistening snow there were a few scattered large glittering flakes that softy fell to the ground.  It was stillness and magic.  That glimmer of magic was probably really formed from the glimmer of hope my doctor gave me Thursday night.  He had news that a surgeon from the NIH (National Institute of Health) had completely reviewed my case and wanted to talk with me, he needed my permission to share my contact info which of course I gave.  Now I had been told back in December by both my primary and my second opinion oncologist that surgery was not an option so I did not want to hope too much.  

Friday Morning I had a conference call with Dr. Blakely and his 2 nurses.  He is a specialists in gastric restructuring surgery.  It will involve some extensive surgery with removal and resectioning large portions of my liver and a distal gastric bypass. But his goal is to remove most and possibly all of the cancer.  I was stunned!  Even if he is unable to remove all of it I have such a slow moving cancer that removing most of it will give me back some years of life.  Possibly a decade or more, that would give time for them to find a drug that works on my version of Wild type GIST tumor.  He has ordered more imaging through my doctor and will then conference with me on more details and specifics of the surgery.

Short term I will be going to Bethesda Maryland for the surgery.  I will need to stay in the Hospital 2 weeks.  Possibly more if any complications. Then 6 -8 weeks of recovery where I will not be able to work.  With the gastric bypass there will need to be some nutrition changes and I will need to consult with a nutritionists for the dietary changes.  Physical activity I can go back to walking/hiking in 2-3 months.  I won't be able to paddle or run or do activities with abdominal twisting for a while longer, though I will be able to do them again after full recovery.

The further good news is since this is experimental surgery through the National Institute of Health, my procedure is completely covered. I thank you greatly for this boon.  There will be some travel costs and Steve will need to stay in a hotel while we are out there but it is small potatoes compared with surgery and hospital fees.

So cheers my friends!  Here is me with a champagne glass toasting a new dawn.  A new possibility.  Here is me daring to hope again, and still I will savor each day and be grateful for each moment I can continue to marvel and enjoy this big beautiful world we live in and all of my family and friends.  Thank you to all my family and friends for your kind words of support and love and prayers.

 

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.