I’m sorry, but you have cancer.
With those six jarring words, Julia’s life was suddenly divided into two stark contrasts: B.C. (before cancer) and A.C. (after cancer). While on the phone with her otolaryngologist, who had just operated on her the day before, she fumbled for a piece of paper and a pen to write down the diagnosis, Adenoid Cystic Carcinoma.
I remember asking him to spell it. ‘A-D-E-N-O-I-D-C-Y-S-T-I-C.’ A type of salivary gland cancer seemingly arising from my sinus cavity, explained Julia.
Her B.C. life had been relatively uneventful. Julia grew up in a small town southwest of Indianapolis and attended Butler University for her undergraduate degree where she met her future husband, Andrew, as both members of Butler’s golf teams. They then managed a long-distance relationship during Julia’s two-year stint at the University of South Carolina, where she earned a Masters in Speech Pathology. She moved back to Indiana to accept a job as a Speech-Language Pathologist (SLP) at a local hospital and they married soon after.
Nine months later, she underwent surgery to remove what was thought to be a benign nose polyp. Julia, who had a special interest working with head and neck cancer patients and hoped to specialize in such care one day, became one.
Her doctor explained her diagnosis, This is a fluke. This is a really rare disease. And where yours is located is even rarer. It grows along nerves. It likes to come back. I’m sorry.
Julia’s A.C. life included phone calls and physician visits to create a plan. She had an additional surgical nose endoscopically, but the surgeons were unable to achieve negative margins (tissue samples without evidence of cancer). She then underwent an extensive surgery, a craniotomy, during which nearly all of the cancer was removed — save a tiny bit near her eye.
Next came the weeks of chemoradiation — 33 daily radiation treatments plus weekly chemotherapy.
My mouth was dry as a bone. It hurt. I essentially lived on Ensure shakes and lost a significant amount of weight with the constant threat of a feeding tube, said Julia. I swore I’d never take another bite of food for granted again.
I am well aware that I am luckier than most as my difficulty with food was acute and limited to the weeks during and following treatment. However, it was quite vexing to realize just how much of our lives were centered around eating. During treatment two important milestones passed by during which our usual activity of going out to eat was just not an option. My husband encouraging me to eat resulted in a fair amount of friction, as I usually fired back ‘you try eating something that tastes like nothing and see how you like it!’
Now, Julia lives in the A.C.T. or after cancer treatment era, the transition to which was a heck of a lot harder than she thought it would be. Once she finished treatment and things essentially returned to normal, she found herself being much more anxious, ruminating on negative thoughts, needing to fill every second of her time with something lest she be left with her own mind.
The moment I was given the diagnosis of ACC, I was immediately thrust into ‘fight or flight’ mode.
I had fought through three surgeries, one of them major, and endured six and a half weeks of grueling chemoradiation. As far as we know, the cancer is gone. Now what? I quickly found that what was left to fight was the fear, the anxiety, the mentally taxing impact cancer had and can still have on my mind, including fear of recurrence.
I will close with a passage that was written by Tim Leyden, Sports Illustrated, who profiled professional American middle distance runner Gabriele Grunewald twice during her fight with ACC. She is my guidebook for both living as a survivor and my guidebook should my cancer return. She is why I continue to work every day with patients who continue to deal with dysphagia related to head and neck cancer, whether during treatment or in the years following. She is why I have patients look me in the eye when they are so miserable during radiation that they don’t even want to lift up their heads. She is why I spend time in the exact places where I am constantly reminded of the existence of cancer itself.
So, understand this: Gabe spent the last years of her life fighting, living, running…. inspiring others… fully aware that she was not winning her own fight but fighting ever harder just the same. That is something beyond bravery. Something beyond courage. Many of us live every day in denial of our own mortality, gently nudging its presence to the perimeter of our existence. Gabe’s mortality was in her grill, and she punched at it until she could no longer lift her arms.
To request Julia for your local event, please contact us at info@headandneck.org or complete the online form.
