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    Posted June 6, 2008 by
    Location
    Poulsbo, Washington
    Assignment
    Assignment
    This iReport is part of an assignment:
    Surviving a brain tumor

    Surviving after a Left frontal grade III glioma

     

     

    The first two images show a robust "healthy" man of 43, avid kayaker, hiker, mountain climber and then, on Saturday January 13, 2007, he suffered a grand mal seizure at home with no warning signs before that. Seeing and hearing the vocalizations spasms and finally watching as my husband collapsed hitting his head on the night stand, pupils fixed and diliated, involuntary tears streaming from one eye unable to hear me, speak or see, at that point was the single most terrifying moment of my life, until the MRI showing a 5.5cm tumor in his frontal lobe, they new it was cancer just by the size of it. By 8pm the next even we were in the Neuro wing of the University if Washington Surgery Pavillion awaiting a consultation with the attending Surgeon for the next available craniotomy opening in for days time (?!!!?). "BTW, were we organ donors?"  The timing left us one day to arrange lastwills that we signed in the hospital lobby the morning of the surgery. Most 36 year olds have these tasks at the ottom of a long list of things to do before I turn 45. Suddenly, these were 'things to do before Thursday when they remove my husband left frontal lobe'. I was alternating babbling, crying, writing to do lists, trying to contact family, close friends, bosses--being fairly new weds, not sure who was who, what to say on their message machines...after a total ressection, intensity modulated radiation for 6 weeks combined with Temodar, then 7 months of combined Temodar and Accutane oral chemotherapy, 80 mg Melatonin/ Curcumin/Boswelia 350 mg supplementation to control brain swelling and long radiation side effects, my husband feels fatigue most days, confused 1-2 days a week but is otherwise able to enjoy most activities like gardening, yard work and Sudoku puzzles, he still struggles with planned speech and communication , which made it necessary for him to retire from hishigh stress IT Management  position. None of this would have been possible with out  Full coverage medical insurance for the first 2 years. Anyone with out premium medical coverage diagnosed with a malignant brain tumor- is in dire straights. Another important factor in survival for us was the combine efforts of our mothers and fathers- literally coming over with the vacuum, paint rollers and pots of food for the last year. Finally, the collateral post traumatic stress for spouses, children, parents, sisters of  literally watching someone "losing part of their mind" is beyond comprehension for most people. Psychological support for care givers is a must.

     

     

    In summary,  

     

     

    My spouse was diagnosed with  a grade III glioma a year and a half ago in the frontal left lobe. Fortunately, my spouses relative youth, athletic lifestyle and a complete ressection are positive factors in his continued survival. Depending on several factors, not limited to the Senator's age, but also certain genetic factors that can be tested for by his neurooncology team, he may respond well to a combination of new advanced Gamma knife/Cyberknife radiotherapy, Intensity Modulated radiation therapy which is very precise and minimizes radiation exposure to neighboring healthy cells (using real-time MRI technology) and several newer or "off label" chemo therapy discoveries, such as Temodar inconjunction with Isotretenoin (Vit. A analogue, aka Accutane), Celebrex,tumor fighting antibody vaccines (Genentech) and high doses of the hormone Melatonin, just to mention a few options. There are several "Centers of Excellence" in the US such as MD Anderson, in Texas, UCSF ans Stanford, in California, Mayo Clinic (MN) and Dana Farber Cancer Institute, Massachusetts, Duke etc.. Continue giving research funding gifts and support for these and other organizations, they are literally saving lives. With the right combination the Senator's prognosis can be improved and he may enjoy additional years of quality time with few major "deficits". Adaptability, Hope and Courage are also fundamental for survival of any life threatening condition, he has shown us all of these, my heart goes out to him and his family, in support.

     

     

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