Kenneth Whitley

Dr. Desjardins Team

In 2016 I was at the top of my game professionally physically, and I thought spiritually.  I was successfully growing a $multimillion business and had the  respect of peers, friends, and family.  I was exercising at a high level, had a new home, was teaching adults and High Schoolers at church, and had two wonderful daughters and son in laws.  In December of 2016, for the first time, in my life, I suffered migraines.  The PA gave me a shot in the bum, scripted a dose pack of steroids and sent me home.  The treatment worked and I credited the pain to end of the year stress.  On  Super bowl Sunday of 2017 life was turned upside down and my faith journey became supercharged.  I entered my brother's house for a party and he insisted I go to the hospital immediately.  While I didn't feel bad, he and others noted an imbalance in my gait and trouble with my speech. My girlfriend (Cathy) took me to the hospital and a CT scan revealed a tumor.  After admission to Neuro ICU, A surgeon removed a tennis ball size tumor from my  right temporal lobe.  The surgeon told Cathy my brain had been close to herniation and I was 24-36 hours from death; the operation saved my life.   My Journey through 2017 had many hurdles and blessings.  After my craniotomy and transfer from Neuro ICU to a regular room, I called Dellann Elliott Mydland at End Brain Cancer Initiative.  Dellann's team was factual, frank, and encouraging. The EBC team provided guidance and insight that changed my and Cathy's approach, to my treatment, and connected us with key doctors in North Carolina.  Cathy and I, however, had embarked on a faith journey no conversation could prepare us as GBM creates challenges at a fast and furious pace.   As 2017 progressed the challenges and hurdles continued to stack up like playing cards.  In March, we visited Duke to find I was NOT A CANDIDATE for the polio treatment or the CMV clinical trial (the only clinical trial they could offer). We also visited two other Cancer centers and started radiation, chemo, and a clinical trial.  In April Acid Reflux, from the drugs, inflamed my sinuses to the point of fluid was draining from my ears.  In May, a routine MRI showed swelling and midline shift.  I go to back in Neuro ICU with a dexamethasone drip and told a second craniotomy was urgently needed.  Cathy and I took a cautious, conservative, and urgent approach seeking counsel from multiple surgeons and oncologists in the Charlotte area and the team at EBCI.  We concluded it was serious and a second craniotomy was less urgent than my admitting neuro oncologist had painted.   In June, we went back to Duke where a new regimen of chemo was scripted.  Also, in June, I proposed and Cathy accepted.  Since she had been walking with me since the tumor was first found, she knew the prognosis and I was blessed with her "YES."   August proved to be a monumental month.  We found through a routine MRI, the tumor was still growing and Duke had a clinical trial showing promise, that I was a candidate!! This Duke trial was new hope as my tumor had grown through radiation, a clinical trial for Novalmab and multiple rounds of temadar.  On August 31, 2017 Cathy and I stood before God, the preacher, and many friends to say "I DO".  God blessed me with the love of a wonderful girlfriend and now He gave her the courage to enter a covenant relationship with a guy carrying a brain tumor.   While tumor growth was a concern, the hurdles GBM brought to my daily life were extremely frustrating.  I had difficulty reading as I would lose the left 2 inches of the computer screen and inch of a book.  I also lost the first 2-5 letters of some words.  Women, for example read men leaving me with two men's restrooms and sometimes a very red face.  Loss of left peripheral vision also caused me to run into doors, walls, store displays, AND people on my left side.  Most people were understanding some were offended.  Before GBM I was using reading glasses and experiencing some loss of hearing.  After the first craniotomy my vision deteriorated further and reading a shelf tag became a challenge. Deterioration in hearing, and sight were compounded by "brain fog."  I went from top of my game to can't find the game in a few short months.  I quickly identified hearing and vision declines.  I was slower to pick up the significant reduction in cognitive processing speed and it became a significant point of frustration.  Not only did I struggle with things that were once easy, everything took longer and I couldn't understand why.  With the frustration of these changes, the emotional impacts from the tumor, and emotional impact from drugs, my moods were shifting like the spring weather.  My mood may change in a few minutes or a few hours and I couldn't understand why.  My challenges were further compounded by extreme dizziness when I stood after sitting for a while.  I would get so dizzy I had to hold onto something.  A couple of times I thought I was going to fall down while holding onto the car  or parking sign.   We believe this was due to low cortisol caused by long term use of dexamethasone.   September brings the clinical trial at Duke.  On September 19, 2017 Dr Alan Friedman drilled 4 holes in my head and started a 72 ML drip of bacteria into the tumor area. Today, my journey continues and I fully expect the challenges of GBM to continue changing and coming.  I know, however, my god, Jesus walks with me and my family on this journey.  GBM is my disease, not my identity.  I am the adopted son of a loving god.    I started this journey believing I was at the top of my game on all fronts.  I am now closer to God than I have ever been and am physically stronger than any time in the past 5 years.  Through this, I have experienced the true meaning of grace (from God, friends, and family) and come to realize where my faith should rest.  In January of 2017, I relied on me and  Me LET ME DOWN. The day after each operation, I was to lethargic to feed myself, Within a couple of weeks I was doing cardio and strength training.  The ONLY thing I did was try over and over again.  Don't quit!!  THERE IS HOPE!!      Through this journey, I learned to put one foot in front of the other; keep moving forward; and trust God.  While I had trusted him with my soul, this journey has taught me to trust Him with my everyday life.    I get to face the unknown with a known god that knows and loves me. Since the September "infusion" my  MRI's have shown tumor reduction and dissipation or " no measurable change in the tumor!"  A "NON DUKE" NEUROLOGIST SAID "I HAVE NEVER SEEN GBM DO THIS. Additionally, Hydrocortisone supplements took care of the dizziness; my peripheral vision is getting better; AND I can read again!!      DON'T GIVE UP!! THERE IS HOPE!  Put one foot in front of the other; keep moving forward; Define and pursue your goals while putting your trust in God.  Doctors can treat.  They can't heal.  God does, however, work through doctors and scientists.  New GBM treatments are around the corner and Duke has the best medical team in the world.  Don't give up!  Once again, define your goals and focus on the future.  Focus determines direction and attitude!  Let someone else have an "OK" life.  Seek an awesome one.  I am hoping to run in the 2019 Angels Among Us 5k.  There is a good chance I will be wearing a shirt with either D2C7 or R2D2 on the back.  This will be to recognize the clinical trial God worked through to change my life.

 

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