52 People You Need to Meet: Tracie Abbott Langley

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What I wish I knew before my husband was diagnosed with brain cancer…



Four years ago today, my journey with my husband’s brain cancer began. For the previous 5 weeks, my husband had been struggling with headaches which we attributed to a weather change and sinus issues. You see, we had been in Florida for a few weeks and then had to rush home to Kentucky on Jan 11, 2010.  My Mom had been killed by a drunk driver on the 10th.   Mel had been having headaches, but what really made him finally go to the doctor was what he thought was food poisoning. (I was out of town with my Dad during this incident). Mel was hallucinating and vomiting for several days during this episode. Weeks of testing for swine flu, H1N1 etc., proved it was not any strain of flu.  Finally, I went to the physician’s office with him once I observed him with some balance issues and slurring of speech. Once the doc heard my concerns, he ordered an MRI of Mel’s brain.  I thought it was a mini-stroke.  I’m pretty confident Dr. Schumer knew it was a brain tumor, but bless him for not freaking us out prior to the diagnosis.  

On Feb. 16th, my husband finally had his MRI.  I was not with him as we were preparing to leave for Florida that evening at 8PM.   Long story short, he came home, invited a couple friends over for a good-bye cocktail, and dropped the dreaded news on the three of us.  He said “We’re not going back to Florida.  I have a brain tumor, it’s a bad one, and I’m scheduled for surgery Monday morning.  I’m sorry.”  

And so our journey into the horrific world of brain cancer began.  On the morning of my 51st birthday, my handsome, rugged, full of life husband had a craniotomy to remove a tumor the size of a baseball from his right frontal lobe.   I was inundated with booklets and pamphlets by the hospital, many of which were geared towards cancer patients in general, and one entitled “Living with a Brain Tumor”.  I read them all, took the advice to heart and was prepared to fight this beast with every fiber of my being. Mel was ready to do the same. Nothing in those pamphlets prepared me for what was to come.

He was fine for 3 weeks after surgery, recovering amazingly fast and jumping right back into the world of work, friends, and just plain old living.  On March 14th, my beloved had four back to back Grand Mal seizures and was hospitalized, just one of many trips to the ER.   Chemo and radiation began the very next day.  Six weeks of radiation and one year of oral chemo to try to tame this monster.  

What no one told me, what none of the literature prepared me for, was just how this disease would change our lives.  No one could give us an answer to the question ‘how long’, other than there is no cure, this disease is terminal.  It varies, everyone is different.  No one told me of the personality changes that are common from the steroids.  My beloved happy-go-lucky husband became, at times, a hateful, distrustful, paranoid person. He lost muscle tone from all the medications.  He needed help standing, walking, bathing. There were many incidents of horrible falls. I had to be on hyper-alert 24/7.  Medications were to be taken every four hours; handfuls of pills with differing requirements, food, no food, with water, etc. I had no idea how to cope with all of Mel’s needs; I was overwhelmed.  This is when I turned to the internet.  

Thanks to the internet, I found the info I needed.  I found statistics. I found treatment options. I even found a few long-term survivors. Then one day I stumbled upon a page, Cancer Compass.  Finally, I found others who were in this same battle with a loved one. Then I found CarePages, and found more women, just like me, who were struggling to cope.  I found advice, encouragement, and yes, even humor from these women.  They became my lifeline. 

My husband’s battle was short and brutal.  Every day was challenge, every day I was both mentally and physically exhausted. After 5 1/2 months, my beloved Mel was taken by the beast called Glioblastoma Multiforme.  I felt lost in the beginning of this journey, but now I was truly alone, in shock and disbelief and had no desire to live.  I was adrift.  My grief was overwhelming.  

Somehow I survived that first year without my beloved Mel.  In August of 2011, with the help of a dozen or so women that I had met through Cancer Compass and CarePages, through CaringBridge and Facebook, we started a private support group on Facebook.  One geared only towards women, only for caregivers of brain tumor patients. A secret place where we share our sorrows and share our experiences of dealing with all the difficulties of this disease. We give advice, offer support, and hold each other up when we think we can’t stand for another second.  These women have become my friends, and I’ve had the pleasure of meeting many of them in person. Our goal from the beginning was ‘no one fights alone’. We are 249 souls strong now, one of the blessings in my life since the death of my husband.

What I wish I knew in the beginning of this journey was that even though I would lose the love of my life, I would somehow continue to grow, make new and meaningful connections and become a better person because of it.   No one fights alone, and with the help and support of others, you can survive it too.  

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