Elfie’s Cancer Journey
Read about Elfie’s journey with tongue cancer and the power of support. Her struggle with cancer teaches us the importance of persistence and strength.
Elfie // 30 Stories Campaign™ // Oral Cancer Awareness
I had a sore on my left tongue for more than five years. I never thought it required medical attention. Soon, the entire left side of my tongue became raw and inflamed, as if someone had razored across the surface. It got to the point where I was chewing only on the right side of my mouth and ingesting mostly soft foods and liquids by straw. My partner finally convinced me to take action. After several routine dental appointments, I compelled my dentist to address my oral pain. He finally recommended that I visit an ENT specialist. This ENT specialist biopsied my tongue, was very concerned about the results, and referred me to an ENT surgeon.
Thus began my journey with tongue cancer, which unfolded during the COVID pandemic. As such, I had significant difficulty making an appointment with an ENT surgeon. When I eventually did, the surgeon said I needed a total glossectomy—he needed to remove my entire tongue! I had never even heard the word “glossectomy” or its implications before this appointment, and it scared me. Wanting second opinions, I sought other surgeons who told me the same thing. It seemed I was about to lose the two things in life that I enjoyed the most: talking and eating. I was terrified.
I was persistent in my search. Finally, one ENT specialist suggested that an aspect of the results was not fully lining up with the clinical narrative of cancer. Instead of jumping straight to a life-changing surgery, he recommended I see someone who specialized in the oral mucosa. So I met with an oral mucosa specialist who informed me that I had oral lichen planus, a chronic autoimmune condition that had put me at risk for oral cancer.
Get Screened
Detecting cancer early can increase your chances of survival and decrease the overall cost of treatment. Perform a self screening, find free screenings near you or make an appointment with your healthcare provider or your family dentist. Not many people realize that their dentist is trained to look out for signs of cancer in your mouth.
Nothing is too silly to bring up to your surgeon, specialist, and their medical staff. Do so promptly. Do not wait.
I eventually underwent a partial glossectomy, as it was the best option for me. I thought that eradicating the offending part of the tongue would render me cancer-free. However, I realized this was going to be an ongoing saga when my cancer recurred in March 2021. The raw, razored look of my tongue quickly returned. After visiting six different surgeons that year, I landed on an ENT surgeon that I felt I could trust. He discussed his intended treatment course with me. Contrary to his recommendation, my fear of the unknown prevailed. I opted not to undergo a second surgery at that time, exploring chemotherapy and different therapies before returning to my ENT surgeon’s office.
More than 15 months later, I realized it was imperative that I have surgery. The pain level on my tongue and in my mouth had increased exponentially. Another partial glossectomy ensued, in addition to a left neck dissection to ensure that all my lymph nodes were clear. The two months of radiation that followed were extremely challenging. It took immense effort for me to speak. Radiation seemed to be a “gift” that kept on giving. What would the impact of radiation look like in three, five, or seven years? How will it affect my speech or my ability to swallow (dysphasia)? Will the chronic dry mouth and lack of saliva (xerostomia) continue? Will it change my ability to chew and taste a variety of foods with different shapes, sizes, and textures? What other unknowns will I face?
To anyone else facing their own head and neck cancer journey, I would say: always be vigilant. Pay attention to all oral changes and any oral, head, and neck pain or details that may occur. Nothing is too silly to bring up to your surgeon, specialist, and their medical staff. Do so promptly. Do not wait. Do not allow fear to interfere with action.
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This process is teaching me to be more deeply engaged with my life on a day-to-day basis.
My ability to eat and taste is largely compromised, and it takes a huge amount of effort to speak with the clarity that I do. I am a huge foodie, so the second surgery, coupled with radiation, was an additional life-altering experience. Something I miss most is some of my comfort foods, such as a juicy burger on a bun, chocolate, or mac and cheese. I miss being able to enjoy a drink or savor the delicious tomato sauce of Italian food. Coffee is too acidic for my tongue. I no longer enjoy the taste of food or the textures as I once did. I now avoid eating my favorite foods to hold on to my fond memories of them. So much grief is involved in my journey, and there is no way to turn away from it, mask it, or sugarcoat it.
I am grateful for the cancer support I have received from friends around the globe, without which I could not have made it through each day. These friends were a huge part of my healing journey. They all showed up for me in amazing ways: snail mail, phone calls, gifts, letters. Their kindness and compassion were invaluable. My partner, who has been my steadfast support, played and continues to play an indispensable role in providing me with crucial support at every stage of my ongoing journey. I have also attended some support groups. However, at this point, I want to take a small break from facilitated cancer groups to find more time to connect with myself physically and spiritually.
After all of my experiences, I am significantly more present in my daily life. I am a planner by nature and often think several steps ahead, but this process is teaching me to be more deeply engaged with my life on a day-to-day basis. Figuratively, I find myself reaching for and tasting all the fruits of my life in all moments. I use all the energy and stamina that my new body allows.
When people approach me… I am able to use the opportunity to educate them about my experience with oral cancer.
I used to get angry when people would approach me, saying they understood what I was going through with my cancer diagnosis. I could not even bear to speak about it. For context, I buzzed my brittle hair during radiation. The “buzz” continues, as do the overt assumptions by random people as to why my hair remains short.
When people approach me now, I am able to use the opportunity to educate them about my experience with oral cancer, and head and neck cancer, as well as learn about their respective stories with cancer. Everyone has a unique cancer experience that deserves distinction. The cancer I experienced, oral, head and neck cancer, is markedly different from breast cancer or prostate cancer.
I know I have come a long way. I can be more open and vulnerable about my story in ways that previously I could not. Now I am in a place where I can put my story out there for the sake of advocacy and education.
Despite my growth, my grief continues. It is deep and it is wide. The sacrifices imposed on me were never a means to an end, but an ongoing process. This is the most challenging part of my cancer journey. However, I actively tap into gratitude. On tough days I stick by this mantra: a negative mind will never give you a positive life.
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