Sunday, May 24, 2015

Nine Years and Counting: The Karnofsky Scale


It was nine years ago on Memorial Day weekend that Ted stumbled on a walk and our lives changed forever.  I know how lucky I am to have this man in my life.  This last year has been a stressful one. One friend died after a 20 year battle with brain cancer and another was attacked again after eight years tumor free.  She's doing great and has beaten the GBM again, but she is a reminder of the aggressive randomness of this cancer. Ted's MRIs were a big concern this year as well, but the doctors assure us that we can hold our breath again for another six months.  

Support from my family and our friends has been tremendous over the years and our ability to travel to Arizona has been a key factor in keeping me sane and Ted healthy.  When Ted was first diagnosed, our oncologist discussed the Karnofsky Performance Scale with us. In a nutshell the scale is used to determine effectiveness of treatment and prognosis of patients.  The lower the number on the scale, the worse the prognosis.  This scale has been a driving force for me, even today, nine years later.  

Ted with KC and Zoey Memorial Day weekend 2015
Renaissance Trail, Vancouver, WA
As a caregiver, and someone who is hopelessly in love with my husband, I made it my mission to make sure Ted's score remained as high as we could get it. Exercising regularly and making sure Ted gets out of bed in the morning are daily routines. Because his frontal lobe was damaged, he has difficulty "initiating" things. Once I get him up in the morning and make sure he takes the medications that help to keep him alive and actively participating in life, he does very well.  It's that hour in the morning it takes me to convince him to get out of bed that is crucial. My schedule changed recently and it drastically affected him.  I was leaving too early to get him out of bed.  If he doesn't get out of bed, he stays there a large portion of the day and doesn't eat, or at least eat well, and he forgets to go to Tai Chi or to volunteer at the VA. He also forgets to shave and shower. 

 I'm mentioning this as a reminder to the caregivers out there who struggle to hold on to jobs while caring for loved ones.  It's never easy. Motivating someone else can be draining, I'm sharing Karnofsky Scale today for those of you who have loved ones who are successfully being treated with chemo and radiation but perhaps are having difficulty with quality of life issues. 

 For nine years, I've taken Ted to doctor after doctor, determined to find a "fix" for something there isn't a fix for, but I'm driven to keep our quality of the life the best it can be for as long as we can. Through this journey, we've discovered a cocktail of drugs to keep him alert and productive, and I've discovered that sometimes as much as I feel like pulling the covers over my head and staying in bed with him, it's not an option. I have used the Karnofsky Scale as a tool, or weapon.  I'll take anything I can get, so if any of you have suggestions or success stories, feel free to share them with me and I will pass them along.