Dancing in the Storm: My Journey with Oral Cancer
As an oral cancer survivor, I am very passionate about spreading awareness. The message is just not out there for this cancer as much as it is for other types. When I was diagnosed back in January of 2012, it came as quite a shock. I never smoked a cigarette in my life. I never chewed tobacco. I’m not a heavy drinker. But for months I had been biting my tongue and thinking I had a sharp tooth, so my doctor ordered a biopsy. It came back positive for squamous cell carcinoma.
Dr. Arshad saved my life. He removed a third of my tongue and actually rebuilt it using a part of my forearm. He then removed skin from the top of my thigh to cover the section he took off my forearm. It’s quite remarkable, but the healing process was no easy road.
There was a point in my journey when I said, “That’s it; I give up.” This cancer is so different from others, and I felt that no one knew what I was going through – emotionally, physically or spiritually. I looked different and I couldn’t eat. The feeding tube was one of the hardest parts for me. I was born in Germany, and you can’t take bread away from a German girl! I found myself becoming obsessed with food – I would take pictures of it and dream of eating again.
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Yes, there were dark days, but I got through them. Through it all, I had to believe things happen for a reason. My awesome nurses, sense of humor, faith, extreme stubbornness and positive attitude all helped me heal. A nurse named Elizabeth even covered my mirror for me when I didn’t want to see what I looked like after surgery. Another nurse, Roberta, gave me a pink princess sippy cup, which enabled me to finally swallow. These two little acts meant so much to me. I see Elizabeth periodically when I stop in at Roswell, but I hope I can find some way to thank Roberta one day.
Now, as I adjust to my new normal, I try to help others get through what I went through. I wrote a book called Oral Cancer: My Journey, and dedicated it to my mother for giving me my German stubbornness, and to Dr. Arshad and his team, for giving me back my life. Dr. Arshad is awesome, and I try to make him laugh whenever I can! I’m just so grateful to Roswell. I actually live in Pennsylvania and drive over two hours for treatment here, but I feel so fortunate to have this dedicated cancer center within driving distance of my home.
I’ve connected with other survivors and always try to talk to patients in the waiting room when I’m at my appointments. I explain that certain things — like when you can eat again or what your limits will be — are different for everyone. (I can’t drink soda or eat spicy foods.)
But I also tell them it will get better — and it will.
Editor’s Note: Cancer patient outcomes and experiences may vary, even for those with the same type of cancer. An individual patient’s story should not be used as a prediction of how another patient will respond to treatment. Roswell Park is transparent about the survival rates of our patients as compared to national standards, and provides this information, when available, within the cancer type sections of this website.