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Struggle and Fulfillment

Published on May 18, 2016 in Share Your Story

I’m still here after 10 ½ years after a seizure and then being diagnosed with a mass just above my left ear (“left temporal lobe”), followed by surgery. We lived in Tampa, and my wife was very dissatisfied that my first hospital wanted my to wait a month for another MRI before considering surgery. Because she had two friends whose husbands were doctors at Moffitt Cancer Center. Just after getting my pathology report, I got a call Saturday morning from Steve Brem, the lead brain tumor surgeon at Moffitt (he’s now at Penn). I read him the pathology, and he said I have an anaplastic astrocytoma, that they would do another MRI Monday to set up the tumor site, and that he would cut on me Tuesday. That’s exactly what happened, and immediately after the procedure Dr. Brem gave it to me straight that he got everything he could, but because there are tiny threads on the edge of the astrocytoma, I would never be free of the disease.

Moffitt’s pathology called my tumor a Grade III, and I agreed to go through six weeks of radiation and then a five-day cycle, every 28 days for six months with oral Temodar (I wish we had done 12 months, which is the standard protocol at a lot of brain tumor centers). After that, I was followed by an neuro-oncology team at Moffitt and had MRI’s every three to six months. I was able to return to work while I was being treated, and my only losses were occasionally struggling for a particular word or name. My spelling was a little more atrocious than before my surgery. Finally, I had to get used to anti-seizure medication and to stay completely away from alcohol – not even near beer.

My goal is that my very good live for the past 10 years, thanks to my wife and daughter, family, and friends, can give people hope. I was diagnosed last November with a recurrence. Because we had moved to Charlotte in 2014 when a got a new job, I was seeing a local neurologist, but I decided quickly that I wanted a oncology team that only work on brain tumors, and I’m went to Duke, had a biopsy, and am back on Temodar for 12 cycles. If you can (or have one already), please consider a dedicated brain tumor team, and once you get there, please make sure they are doing genetic testing that wasn’t available when I went through the this. Make sure they identify what are the mutations, because today that’s the information that can tell the oncologists what are the best treatment options, as well as your possible outcomes; I wanted those for my wife and our 9 year old daughter.

We are still running the race against cancer, but so far it’s been more of a fulfillment than a struggle. Having the recurrence has fought me emotionally, especially when it give me new, additional challenges, like getting tinnitus in my left ear (it’s related to the tumor), and when I hit times (thank gosh infrequently) when I cant find the word I want to say. All of this pales in comparison to losing my wife last year to a long restrictive lung illness. Nevertheless, I still feel blessed to have our daughter now in college, my family, and my late wife’s family, and my friends. I’m still here, with reasons to be fulfilled with life, and wanting to spread that fulfillment.

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

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