Healthcare Sales & Marketing Professional and Stage IV Oral Cancer Survivor; Austin, TX
Sometime in late 2013, Jacki noticed a little sore on the left side of her tongue that she thought was probably from biting it. When it was still there after a few weeks, she went to her primary care doctor and was told it was a minor ulceration and just needed time to heal. It was recommended that she avoid spicy foods and swish around this “magic mouth-wash” for the pain. Over the next months, the ulcer seemed to be resolving with very careful attention to diet, but it would then flare up and grow in size and sensitivity. Talking, eating, brushing her teeth all caused great pain.
After months of seeing a dentist and trying night guards for possible grinding, she was referred to a periodontist, who initially thought she might have an autoimmune disorder. Finally, a biopsy was performed in January 2015. The report was clear, and she was told that the tumor was benign. But, the pathology report provided no answers. Jacki still had no diagnosis, which was frustrating, and her quality of life was affected. At 5’6”, she weighed just 103 pounds after months of the diminished diet. She needed answers.
Somehow, by the grace of God, she was led to Dr. Gregory Farwell, Dept. of Otolaryngology at UC Davis in Sacramento and Dr. Nasim Fazel, at UC Davis Oral Mucosal Disease Clinic. Perplexed by the lack of a diagnosis, Dr. Fazel wanted to revisit the biopsy. When UC Davis’ lab performed its own analysis of slides from the original biopsy, the mistake was caught.
“You have cancer, squamous cell carcinoma,” Dr. Fazel told her. “It’s very evident.”
She thought, “WHAT? So, the cancer had been there all along, and, had continued to grow while she struggled to survive.”
Within a week, she was scheduled for a glossectomy. The tumor was removed, and Dr. Farwell was able to get clear margins. Had it spread just a fraction further, she was informed, she would have had to have treatment, radiation and perhaps a neck dissection. She felt very lucky.
At the same time, she felt she’d dodged a bullet, and also wondered “Why me?” She was told tobacco use was the major risk factor; she had never been a smoker and despised the habit. Nor had her cancer been identified as HPV-attributed. Why had this cancer found her?
For the next two years, she was under close surveillance at UC Davis and all was going well. Her husband and she were married in a lovely outdoor ceremony in June 2016. Life was good and they were blessed.
In April 2017, however, she was hospitalized with a severe ear infection, which eventually became a serious bacterial blood infection, requiring IV antibiotics. It was quite a stressful time as they were in the middle of selling their home and getting ready to move to Austin, Texas, due to her husband’s job transfer.
In June, at her final visit with Dr. Farwell, she had a gland that was still slightly swollen on the left side of her neck which he felt was probably still in a reactive phase due to the infection episode and stress. He suggested that Jacki follow up with an ENT in Austin, if it hadn’t returned to normal or became even larger within several weeks after their move. And that’s exactly what happened. By mid-July, she was searching for a new otolaryngologist in a new city; an inconclusive needle aspiration followed, and then surgery to remove the lymph node and get confirmation of the returned squamous cell carcinoma.
Fortunately, she was now only three hours from MD Anderson in Houston. A neck dissection surgery took place in October 2017, followed by six weeks of radiation beginning mid-November. She finished radiation just before Christmas.
“Although you’re told about the possible side effects of surgery and radiation, nothing can truly prepare you for the reality of those consequences. The ravages of radiation to the head and neck are great: the skin burn, the painful mouth sores, the complete loss of taste, the extreme fatigue. Nerve damage from the surgery caused my mouth to droop and speech to slur which required daily mouth and facial exercises,” explained Jacki. “The removal of more than 30 lymph nodes caused lymphedema, so I began treatment with a lymphatic massage therapist. I now have my own FlexiTouch machine and perform daily home treatments to keep lymphedema in check.”
In 2018, all return visits to MD Anderson for follow up tests brought positive news. Both head and neck CT scans and chest scans showed no evidence of disease. However, in early January 2019, just a few days after she had returned home from a two-week trip to California for the holidays, her chest scan showed two lesions of concern. The repeat scans in late February revealed that both lesions had grown significantly, one nearly doubled in size to two centimeters. Jacki returned the next week for a lung biopsy to confirm what she already knew: the squamous cell carcinoma had spread to her lungs. She was now a Stage IV cancer patient. And it all started with a bite to her tongue.
She completed targeted radiation to her lungs in March 2019, receiving as much radiation in one week as she had in 30 treatments to her neck. In May, follow-up scans showed that the tumors were responding to radiation and there is no evidence of spreading so far. Jacki met with another oncologist who recommends holding off on chemotherapy or immunotherapy for now while she remains under close observation. “It was good news, the best we could hope for at this point. We’ll be back to Houston every two months for two years.”
After all she has been through, Jacki feels compelled to do something positive with her experience. As a former teacher, she’s a true educator at heart and wants to share the message of prevention and detection. “Mostly, I’d like to support others who’ve been diagnosed with head and neck cancers; hopefully, my story can be of some help as they face their own difficult journeys,” she shares.