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Andrea R. Sullivan: Kudos to Vaillancourts for sharing their story

Glioblastoma multiforme. There was a time when that phrase meant nothing to me. By the summer of 2004, I was intimately familiar with its devastating effects.

Our encounter began in the spring with a few forgotten words and misplaced items. It accelerated into an unsteady gait, a seizure, bouts of vomiting from unrelenting headaches and radical personality changes. The end came on a mid-August night in a room in the Hospice wing of Buffalo General Hospital as my husband stroked out. He hadn’t survived the biopsy. Mike succumbed to brain cancer. Yes, cancer of the brain.

Up until then, I assumed that brain tumors always metastasized from somewhere else in the body. Among the cancers it is rare, but ironically a glio is one of the more common brain tumors.

But in spite of this being a rare form of cancer, two years later found me reeling from an email. A college classmate told me that our mutual friend’s husband was in stage 4 brain cancer. Although our scenarios unfolded differently, by 2007 both Lynne and I were widows in our 40s. Stan went two years out from his initial diagnosis, but that time was filled with trips to the Robert Tisch Brain Tumor Center at Duke University, which meant countless protocols and surgeries, as well as the private battles from loss of reason and function.

Part of what makes this such an aggressive form of cancer is the tumor itself. Some brain tumors are encapsulated and can be removed without much harm to surrounding brain tissue. But a glio is star-shaped and can only be debulked, which means it’s never entirely eradicated. As Lynne put it, “it’s a delicate balance between taking as much of the tumor as possible while still leaving intact as much of the person as possible.”

Rarely is life with this cancer accurately portrayed. Lynne and I keep an unofficial count of how many times a glio is worked into the plot of some TV show or novel. Apparently, glio can be found listed in some writer’s handbook under the chapter titled, “The Most Horrific Diseases That Can Befall Your Protagonist.” And most of these characters do seem to “go gentle into that dark night” because they simply don’t show up in subsequent episodes or chapters. Lynne did remind me recently of how closer to reality the TV show “ER” depicted Dr. Mark Greene’s battle with brain cancer.

Glioblastoma briefly worked its way into the national media in 2008 when Sen. Edward Kennedy was diagnosed with having such a tumor. We heard about how valiantly he battled it, but did we ever read about him struggling to find the word for the eating implement he was holding in his hand? That is, if he was able to get out of bed for a meal or even felt like eating. Or hear about him expressing his frustration over forgetting the word “spoon” in nonsensical ramblings? That is, if he was still able to speak. Say nothing of his being curled up on the couch in a fetal position from one of those countless, horrendous, completely debilitating headaches.

Thanks to The Buffalo News and WGRZ, Western New York is now better acquainted with this insidious type of brain tumor from their reporting of the Vaillancourt family’s story. I’m very heartened by the Vaillancourts’ willingness to share their unfolding drama in all its wrenching details. I pray that theirs can be the miracle happy ending, and I thank them for allowing us to spend some time with them in the midst of their most unimaginable nightmare.