First of all, I could not write this without the support of my parents and my brother who have been with me on this roller coaster.
This all began when I was diagnosed with an oligodendroglioma brain tumor on December 28th, 1989. It was my last weekend in Winchester, Kentucky before leaving to be a salesman/distribution manager for a Fortune 500 company (Leggett and Platt, Incorporated).
Well, things quickly turned when I had a blackout when I was driving to the local Holiday Inn bar and lounge for some cocktails. What turned in to lively dancing and beer on the dance floor at 8:30 pm, I ended up having a grand mal seizure. Next thing I know the local EMT’s had me to the side asking all of these questions which I clearly could not answer. They ripped my new long sleeved Polo shirt off (which really irked me) and rushed me to the local hospital where I had another seizure. I had never had a seizure or any signs of having one before.
I was then sent to the University of Kentucky Hospital. I remember waking up with parents there who drove from Missouri, my general manger for Leggett & Platt in Winchester, KY and a neurologist that told me I had a brain tumor. I was shocked at the beginning not knowing what life had in store for me and what my friends would think of me.
Do I still have a job in Phoenix? Will I have surgery? Will I die? A lot of unknown questions only a brain tumor victim knows.
Next, my brother Randy drove up from North Carolina to comfort my parents and me.
The University of Kentucky would not operate on me due to the location of my tumor (deep center of my brain) so my mom sent the MRI
results to 3 other major hospitals who also refused to do the operation. She did find a family friend who worked for Leggett & Platt in our hometown of Carthage, Missouri. We then traveled to Kansas City, MO and met with nurse Peggy Brown. She introduced me to Dr. Robert Morantz, the Chief Neurosurgeon @ Kansas City Research Hospital. He explained the options of having surgery versus radiation or a combination of both. I noticed photos of both his daughters on his credenza and then asked what he would if it were one of his daughters with this decision to make. We then proceeded with his taking 3/4 of the tumor out and having radiation at Cox North in Springfield, MO.
My dad took me every time while Leggett and Platt allowed me to continue working in customer service in Carthage, MO.
The worst part was not the radiation itself, but watching my hair fall out in clumps in the shower and at work.
Not only did my parents support me in everything I did, Leggett & Platt extended the opportunity for me to come to Phoenix no questions asked.
I moved into a one bedroom apartment with used furniture. I quickly made friends, opened a warehouse with two other gentlemen whom we referred ourselves to as ‘The 3 Amigos”. I spent time in our Whittier, CA facility learning the ropes from our seasoned sales force and working the phones in our customer service department. Meeting customers and making sales came easy for me as I love what I do.
Seizures had become a way of life at this point. It was just a matter of when and where the simple partial one would occur. I was afraid to
speak in front of a group of people, attend trade shows, check out of the grocery store or play basketball thinking I may have one. No one, I thought, understood, what I was going thru and the expressions on their faces. The doctors playing with different medications did not seem to help either.
Then in 2006 I received another scare! My benign tumor cells had formed together again! I once again opted for surgery @ Barrow Neurological Institute in Phoenix, AZ with chemotherapy following.
Just when I thought I was in the clear, 2014 came around and the tumor cells had grown together again. Again I chose surgery along with radiation and chemotherapy. I was having a tough time. My mom passed away from pancreatic cancer the same year, and Leggett & Platt closed the division I had worked from for nearly all of my life and 38 years total leaving me without a job.
I woke up May 23rd, 2019 and could not walk. After a series of tests that did not prove anything, I finally was referred to physical therapist from a friend of mine. They have been amazing and I have been walking in a matter of 12 sessions after showing up shuffling my feet and using a walker to get around.
On August 1st, 2019, a test revealed my Grade 2 benign tumor had turned to Grade 3 malignant.
I am currently weighing my options based on what is in my best interest. I always tell people as bad as it sounds “someone has it worse than I do”. I am grateful. I can never thank the endless amount of doctors, nurses, EMTS, family members, friends, Leggett and Platt, insurance companies, perfect strangers and brief acquaintances who have helped me survive this long :)
– Jeffery Long