On August 15, 2015, at age 33, Jenni Lynn Rowell succumbed to mucoepidermoid carcinoma, a rare type of salivary gland cancer. Mucoepidermoid carcinoma is the most frequent-occurring of malignant salivary gland cancers. Radiation therapy, chemotherapy, and parotidectomy are common standard-of-care. In Jenni’s case, these procedures did little to save her life for the long term.
It began as an unassuming lump near Jenni’s right ear. A routine biopsy of that growth quickly escalated into extreme measures: multiple rounds of chemotherapy, radiation treatments, and seemingly endless surgeries—not to mention health insurance hell.
The gravest surgery occurred on April 8, 2013. This operation removed Jenni’s upper-right jaw, the right base of her skull, upper-third of the trapezius, and right jugular vein in the neck. Most devastating, the surgery unavoidably severed Jenni’s facial nerve, which resulted in partial facial paralysis. In total, this dramatic protocol left Jenni with a new set of challenges: an inability to move the right side of her face, limited neck and shoulder mobility, and excruciating neuropathic pain that neither medication nor an implanted electrical spinal cord stimulator could calm.
Additional treatments soon followed that agonizing April 8 surgery: Facial reconstruction--including an eyelid weight so Jenni could blink and keep her eye (mostly) closed to sleep--speech therapy, occupational therapy, and removal of a tumor near her shoulder.
Despite these physically and emotionally painful hurdles, Jenni cleared each one with hope, humor, and tenacity, and continued directing her energy toward things she loved: cooking, traveling, and live music. Spectacularly, Jenni made an impact on scores of people around the globe with her Strangers podcast appearances; and she organized a social media selfie campaign called C Me, which aims to raise awareness about people with facial imperfections and encourage sufferers to accept their own appearance without concealment.
To commemorate our beloved Jenni, on behalf of the American Cancer Society, we have founded the Jenni L. Rowell Rare Cancers Research Fund. The purpose of this fund is to donate monies toward mucoepidermoid carcinoma research as well as other rare, often overlooked cancers that need a financial springboard for scientists to develop new, effective treatments and, ultimately, find cures.
Written by: Brittany Hendrick
Links to hear Jenni, in her own words. A voice that shall never be lost or forgotten: https://alivinglife.wordpress.com/
Jenni appearing on one of her favorite Podcasts, Strangers: http://www.kcrw.com/news-culture/shows/strangers/jenni-rowell-life-interrupted http://www.kcrw.com/news-culture/shows/strangers/jenni-now http://www.kcrw.com/news-culture/shows/strangers/jenni-remembered
Current Prognosis and Treatment Methods: Most Patients with Mucoepidermoid Carcinoma have it from a previous cancer that has metastasized through the lymphatic system and is typically treated with the standard surgery, radiation and chemotherapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4821693/
Since standard methods of treatment are often less effective on rare and unusually aggressive cancers, like Jenni's, larger organizations, such as the National Institutes of Health and the Center for Disease Control and Prevention are employing data organization skills of Biostatisticians and Epidemiologist to construct databases organizing patients' genetic information, type of cancer and responses to different types of treatments, including different types of chemotherapy, for medical health professionals to assess the best options for treatment: https://www.cancer.gov/research/resources/data-catalog
Although this will become a great resource in the future, much of these databases are in their fledgling stages and thus currently aren't much help, especially to rare cancers, for which there is generally less funding to begin with. So far, this method below is the most promising, targeted treatment for mucoepidermoid carcinoma, using the body's own Interleukins present in the Immune System. The goal would be to pursue more research and promising leads like this into Clinical Trials: Anti-tumor Effect of Inhibition of IL-6 signaling in Mucoepidermoid Carcinoma https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4673202/
Please feel free to visit past efforts for fundraising for Jenni to learn more about her! Here's one organized by Carmen B. Fletcher: http://msnixinthemix.com/beat-it-jennifer-rowell-mucoepiermoid-carcinoma-cancer.html
Photos of Jenni L. Rowell by Koko Warner of Ministry of Design