Throat and salivary gland cancer survivor: Why I finally got a feeding tube

I resisted getting a feeding tube for as long as I could. I knew I’d have to use one eventually, but I didn’t feel ready for a long time. I was afraid it would make me a lesser person or less attractive, and I worried that it would completely change my lifestyle. Now that I have one, I must admit: my lifestyle has changed. But I’ve gotten used to nourishing myself this way, and I’ve adjusted to eating seven times a day, instead of two or three. Today, I use my feeding tube as an education tool. I don’t draw unnecessary attention to myself, but I’ve started eating out in public more. I’ll sit near the back of a room and have a tray on my lap under the table. Sometimes, my 4-year-old grandson helps depress the syringe. And if someone asks me questions, I explain what I’m doing and why. I think it’s a great learning opportunity. Because I do still eat, I just eat differently. A salivary gland cancer diagnosis finally forced my hand I started having real problems eating and swallowing in 2000, about 15 years after I received chemotherapy and radiation for stage III nasopharyngeal carcinoma (a rare type of throat cancer). I’d often choke, and had to figure out ways to cough up pills or food that got stuck in my throat. I had a feeding tube installed in February 2016 to supplement my diet. But I wasn’t using it regularly, and I kept on losing weight. Eventually, I was diagnosed with cancer-induced cachexia, or wasting disease. My body simply wasn’t getting enough nutrients....

Finding my voice after throat and salivary gland cancer

I’ve been struggling to make myself understood ever since I was a senior in high school. In April 1985, I was diagnosed with stage III nasopharyngeal carcinoma (a rare type of throat cancer). And for a while, my throat was so raw and painful from the radiation treatments I received that I didn’t want to talk. Those radiation treatments gave my voice a very “nasal” quality, too, so it was sometimes hard for people to understand me when I finally did start talking again. Around the year 2000, I started having more trouble speaking due to the radiation treatments I’d received as a teenager. It became even more challenging in September 2016, when I was diagnosed with stage II salivary gland cancer. I had surgery and more radiation to treat that. Today, I am cancer-free, but I’m still struggling to be heard. Learning new ways to communicate Speech without proper tongue movement is almost impossible. And speech therapy doesn’t help much when your tongue isn’t fully functional. So I carry a notepad with me wherever I go, and sometimes, a dry erase board. Because after the last round of surgery — during which Randal Weber, M.D. removed part of my right thigh muscle and two arteries from my left hand/wrist to repair my neck — the back, right-hand side of my tongue stopped working. I can still talk aloud, but my speech is becoming even harder to understand, and Dr. Weber says it will likely continue to deteriorate. So, when a person can’t figure out what I’m trying to say, I just take a deep breath and write it...

5 ways to help a cancer patient with speaking challenges

After being treated for nasopharyngeal carcinoma (a rare type of throat cancer) in 1985 and salivary gland cancer in 2016, speaking has become a real challenge for me. I can still talk, but sometimes my speech is hard for others to understand. Because of this, sometimes people try to help me in ways that aren’t really useful. So here are some “dos” and “don’ts” for how to be an ally to a cancer patient (or anyone else) with speech challenges. Don’t treat me differently When the wait staff tried to serve me at a recent Christmas dinner, one woman at my table kept saying, “She’s not eating.” When I was offered tea, she added, loudly, “She’s not drinking, either.” That lady probably thought she was doing me a favor. But it didn’t feel that way. I might not be able to speak as clearly as I’d like to anymore, but my mind still works just fine, and I am quite capable of communicating in other ways. I wish she would have trusted me to speak for myself. At a restaurant or party, I can either say or write, “No, thank you,” when I’m offered food. Or even joke, “I’m on a diet.” Strangers don’t have to know all the gory details. Sometimes, when I go out to eat, I’ll say yes when a waiter offers me water or tea, and then just not drink it. That way, I’m not drawing undue attention to myself. Don’t confuse me with my limitations After surgery, my speech became much more limited, so people often don’t understand me. I frequently find myself writing...