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Survivor Interview – Ginny S.

Ginny is a tongue cancer survivor. She discusses changes to her teeth and mouth, physical and speech therapy, and deciding to make her own funeral arrangements.

A senior woman with short hair and a purple shirt

I became a cancer survivor when I was diagnosed with tongue cancer in 2001.

I was diagnosed in March 2001. I was a smoker for 30 years. I had a sore in the bottom of my mouth, and it really hadn’t concerned me, until I couldn’t smoke. I went to my primary care physician, and she sent me to a head and neck doctor. She took one look and said, “You need a biopsy, and you know what I think it is.” I had figured it out. This was cancer. But at that point, I wasn’t very concerned, because I knew nothing about cancer. The only time I had been in a hospital was when I had my children. So, I just thought I could go and have it taken out. It was when I went back to my primary care physician with the diagnosis of tongue carcinoma that it became really clear that this was gonna be a little bit more than just taking it out.

I ended up having a free flap surgery. They removed the cancer at the base of my mouth. They took out the floor of my mouth, part of my tongue, my mandible, my jaw on the right-hand side, and replaced it with bone tissue, arteries and veins from my leg. My fibula became my jaw. It sounds real concise and simple, but it’s a very brutal surgery. The first time they did it, it failed, so I had to have it twice. They explained it to me, but explaining and going through that surgery were basically two different things. I remember waking up in the recovery room. I had a trach tube, so I could no longer talk. I couldn’t move my shoulder, and I couldn’t move my leg. I realized this is serious business. I felt totally helpless and powerless in that hospital. I was very fortunate that I had a very loving and supportive family and friends around me. I ended up staying there for 15 days. When I left the hospital, I couldn’t eat by mouth, obviously. I had an NG tube. I was fed through my nose. My diet for probably the first six months was all liquids. Ensure became my staple.

I obviously had to have a lot of dental work. I ended up in a research program for implants. I have a denture-supported implant, which has made a big difference in the way I can talk and eat. Before, my diet was a lot of soft foods and liquids. I dreamed about steak and tostadas. The implants have made a big difference in my life. It was a three-year process and a couple more surgeries, but my doctors were just super. So, I thank them very much.

The primary thing that still challenges me is my speech. I’m a teacher, and I use verbal communication all the time. I work in Special Ed, so I work with people with disabilities. I got to sit on their side of the street for a while. I remember walking into McDonald’s to get some coffee very early after my surgery, and I couldn’t say “coffee.” I remember the gal on the other side looking at me and then going, “Huh, okay, whatever.” I really got a look at how it is to be in a world where you had to work at being a part of it, with speech, walking around, and having people look at you or overlook you sometimes, too.

When I left the hospital, I couldn’t talk or walk. And I wanted to get out. I wanted to communicate. I wanted to get to the Wellness Center. I believe very much in support groups. My insurance was very good. They provided a physical therapist and nurses to help me get better. I wanted to learn how to talk again. I was writing things on a tablet, and it was very frustrating. I wanted to be able to sit in a group someplace and feel included.

Finally, my physical therapist told me, “Your insurance will pay for speech therapy.” The speech therapist had these huge lists of words and sounds. I had lost the sensation of how my lips felt and how to pronounce words. The first thing she told me to do was practice moving my lips. I was doing that all the time. God only knows what people thought I was doing in my car.

As soon as I felt good enough about myself, I went to the Wellness Center and got hooked up in a support group. These guys just welcomed me. It didn’t bother them a bit how I looked, how I talked, nothing. They taught me so much about treatment. They taught me how to ask questions and not be afraid to confront the doctor and say what I needed to say and get answers from him. I wanted back what I had before the surgery, and I was willing to do whatever it took to get there, and those people helped me to do that.

I’m currently on my third support group. I joined the first one in June 2001, pretty soon after my treatment. You meet with a group of people every week, and you become like a family. As of 2004, I’m fairly sure I might either be the second to last member of the original group, or I might be the only member of my original group that’s still around. That’s when I think about grief and loss. I’ve lost people. Sometimes when you sit in these groups, you’re not gonna go down the Yellow Brick Road together. It’s taught me acceptance, because these people had a lot to give while they were here.

I’m also a member of Team Survivor. It’s a group of women that believe in health—women participating in sport-related activities, supporting each other and sharing their cancer experience. In 2002, Team Survivor had a group of people that decided they wanted to backpack Mount Whitney. I had never backpacked in my life. We all trained for about six months, and we did it. It was the most fun, challenging thing I’ve ever done. We all bonded together and got up that thing and down. I’ve also done four triathlons. I never care about how long it takes me, as long as I cross the finish line standing up. That’s my only goal. It’s just an awesome experience to hook up with all these different women, and share our experience, strength, and hope together. I am so blessed because of how I’ve been able to recover so far, and I have a lot to be grateful for. It’s nice to share that with other people.

I don’t smoke anymore, and that’s made a big difference in my life. I speak for the American Cancer Society. I’m involved in a program called Teens Kick Ash. I talk to middle school and high school kids about what cigarettes did for me. I’m very honest and very blunt. I bring pictures of how I looked and how it is now. I answer their questions the best way that I can and talk about how it’s an addiction. It was something that I just thought would never happen to me, and it surely did.

I felt guilty with my children and with everybody else in my life that had pointed out to me, “You should quit.” It was something that I never got around to. But I’ve moved on to the place where I’m accountable for my own bad choices and my own bad behavior, and let’s move on and see. It was bad choices that put me into that. I’ve been able to change and make better choices. I remember when I told my daughter that I had cancer. I watched her fall apart in front of my eyes. It was the worst day of my life. I certainly felt guilty. It was then and there that I thought, “Whatever I need to do, wherever I need to go, whatever I have to go through, I’m going to live for myself, and for all those people who love me.”

Funeral planning is not something I want my family to be concerned with ever. I didn’t want to leave funeral planning in the hands of my kids. My daughter, of course, did not want to hear that at all. She would take me home and put me in her living room or something. I had to convince them. I don’t even know now if they’re real happy about what I chose, because I want to be cremated. They don’t want to think about that, and that shouldn’t be their responsibility. That’s why I decided. I just told them what I’m gonna do, and that’s the way it’s gonna be. I want them to have fun that day, too. All they have to do is show up and wave goodbye.

I’ve been blessed. I now have the opportunity to rearrange my priorities in life. I’m more focused than I’ve ever been. I get up every day and know that this day is a gift. From the morning to the afternoon, I just do what’s in front of me with a smile on my face and an attitude in my head that this is just gonna get better. I’ve just begun.

I’m Ginny Shoren, and I’m a three-and-a-half-year tongue cancer survivor.

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