Book Summary

Book Summary ** Our lives, after the diagnosis and subsequent treatment, of my husband for a brain tumor, clearly have taken a path less traveled. Yet our journey has and continues to be, a journey of hope, joy and of unyeilding commitment. We invite you into our lives, a view of our childhood, marriage, a marriage seperate from convention, yet strongly bound. Join us as we recall the last twenty-five years, twenty of which have been spent LIVING with a brain tumor. Come, witness our challenges and discover our triumphs as we reinvent our relationship, struggle to redefine marriage roles, communication styles, and reclaim intimacy after illness.

Thursday, August 23, 2012

21 years and counting, may our Hope never fade

It is officially 21 years since Ron’s initial biopsy for his brain tumor.  It was 21 years ago that I insisted that he come home with me to do home rehabilitation.  He had become paralyzed on the right side leaving him with minimal function of his arm and leg.  He needed a quad cane to walk and his speech was slow and he had trouble with nouns.  Our life as we knew it had been changed.  Prognosis, all we knew was that it was a "good tumor", a low grade astrocytoma.  Of course as a nurse I looked up the stats and it was looking like 2-3 years.  They would not treat the tumor at this point because of the damage they did just taking the biopsy.  So we headed home.  I had just started a job in home health/hospice and he was going to get home therapy vs a rehab facility.  He worked hard and was able to regain most all function.
Jump ahead to the end of 1992 and he was able to get radiation – fractioned stereotactic radiotherapy.
Then in 1998 he started losing function again on his right side and he was labeled aphasic, lost the ability to name things (nouns).  Despite surgery in 1996, 1998, 2000, 2007, 2010 he has never regained this function or ability to speak.
So how do I feel 21 years later?  Oh so grateful that he is here with me.  Amazed every day at what he accomplishes despite his challenges.  Determined to share our Hope and inspiration with others.
I was reminded last evening that how you approach life is a choice.  Making the best of what you have and finding the moments of bliss is a habit you work on every day.  I have read recently that many folks have given up on Hope and that breaks my heart. 
What is Hope?  Hope to me is very personal.  I did not hope that his tumor would go away, rather I had hope that we would have the strength to face the next challenge.  I would have hope that each day I would see a smile on his face.  I do not hope that we can have a conversation like other married couples.  Instead I hope that I have the patience to understand his hand gestures and can figure out what  he is concerned with or what he needs.  I do not hope any more that he will gain function of his right hand but I do hope that he can continue to conquer everything he tries with his left.
Many, many, too many actually have recently gained their wings in our brain cancer community.  My Hope is that the family of these folks can find comfort in their memories and have taken the time to appreciate each and every day.  That they did say all the things they needed to say before the long goodbye.  I hope that they take on the charge to raise brain cancer awareness in memory of their courageous loved ones.  To all who continue to fight the battle, learn from me and never ever give up hope, whatever you may hope for.

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