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StumbleUponReader’s Digest was way ahead of the curve when we published a small item in the “Medical Update” section three years ago about the link between human papillomavirus (HPV) and some head and neck cancers. At a medical conference, I’d heard a researcher from Johns Hopkins present a report on the rise of certain oral cancers in young nonsmokers that seemed to be caused by this very common sexually transmitted virus. She called it a coming epidemic, and it really scared me.
That was around the time of the debut of the vaccine Gardasil, designed to protect girls and young women from most of the types of HPV that can cause cervical cancer. I kept asking myself, “Why are we only vaccinating girls from this dangerous virus that can be spread from any kind of sexual contact, including oral sex?” It didn’t make sense to me then, and it doesn’t make sense to me now.
After we printed the short item about this in 2005, I waited for the media to catch on to the story. But the media didn’t. I watched for more research and thought about ways I could write about it. Then, in 2006, I was devastated to learn that my friend Steve Reynolds had been diagnosed with a stage IV squamous cell carcinoma at the base of his tongue. Throat cancer. Steve, a 40-something nonsmoker (below), couldn’t understand how this had happened to him—until the biopsy showed it was linked to the HPV virus, something he didn’t even know he had.
All Photos by Shonna Valeska
Turns out that some 20 million people in the United States have some sort of HPV, and more than 6 million more get it every year. Teenagers are particularly vulnerable, as a recent report showed that 35 percent of 14- to 19-year-old girls carry the virus.
Of the more than 35,000 people who will be diagnosed with oral cancer this year, 25 percent will be related to the HPV virus. Experts say this number is likely to keep rising.
During the course of his treatment, I saw Steve and his wife, Hilary, as often as I could. During one really low phase, Steve sent a touching e-mail to many of his friends, thanking them for their love and support and sharing how he was feeling. It was one of the most honest, searing, and beautifully written accounts of cancer treatment I’d ever read. I replied to his e-mail and said, “If you’re ever ready to tell your story, I hope you’ll let me help you.”
After his treatment, I reminded him of this, and he did. See his story, “The Farther Shore,” on page 150 of the August 2008 issue or on this website.
I’m hoping we can help raise awareness of the dangers of HPV for both men and women with this remarkable story.
As for Steve, he’s working on a book about his experience. Meanwhile, here’s an update from him:
How Steve’s Doing Now
(in his own words)
My first post-treatment checkup, about six months ago, went fine. It was just a visual inspection, as doctors tend to be quite careful now about spraying you with gamma rays, even every six months. Dr. Fury had his hand in my throat again, and we got to look at the area of the tumor on a color monitor via the spectroscope in his office. All looked clear.
Now I am teeing up the next checkup, which does involve injection and dye and a full-body PET scan. But scheduling it is complicated by bad news at home: My wife, Hilary, has lost her job, so now we must switch insurance plans from hers to mine. Allegedly this will happen like clockwork when hers expires and mine picks up, on July 31-August 1, but it’s all so expensive, I am leaving nothing to chance.
I may be paranoid, but if coverage were to somehow lapse, and I get diagnosed with a recurrence, then what will happen? My guess is that the providers will do anything and everything to get out of covering me. So I may not even have my next checkup until September. This is a little dangerous in the event that I am sitting on any bad cells, but at the moment, the larger problem is money.
Steve and his son, Tynan, biking in Chatham, Massachusetts, in May.
A lot of stray post-treatment maladies still bug me. From the surgery, I have some expected nerve damage. I can't move my neck very well, and my upper back and shoulder get very stiff. I have this same pain every day, as regular as a commuter train. Every. Day. And approaching a year from active treatment, I still don't have much stamina. It's bothersome to feel frail, weak. Vulnerability is not an emotion the American male wants to get comfortable with.
My chewing and swallowing aren't all they're supposed to be, either. I can’t remember to do the mouth exercises every day now that I’m working again, and some mornings I wake up with my jaws stuck together—not good. I am consistently the last person still eating a meal. I did maintain some saliva function, for which I'll always be thankful to Dr. Lee's precision-guided nuclear medicine. But often what saliva I have seems like not enough.
To avoid recurrence, I'm supposed to give up alcohol. At a certain age, that’s just, you know, difficult. When you're tired and in pain at the end of the workweek, don’t you want a beer? A gin and tonic? I also have a mild dependence on Vicodin, as I find that on some days, the neck and back pain are too much and that I still must rely on this drug.
But these are minor complaints, and I hope that in another year they'll have tapered off. The biggest change (or perhaps blessing) is in philosophy. What I see now is so many of us wasting energy being annoyed at everyday life. I couldn’t see it before because, of course, I was such a person. Elevators are slow, a waiter gets an order wrong, someone gets a middle seat on a flight and complains all the way to Detroit. I don't do that anymore. When you don’t know how much longer you’ve got, it takes more than life's daily disappointments to screw up your day.
So I bought a bike last week, a used Schwinn cruiser with big whitewalls, fender racks, and a light. Black, five gears, rust, and the front tire rubs on something, but it rides great, and I took Tynan spinning along the Hudson bike trail last weekend. It’s beautiful.
Hilary, Tynan, and Steve at sunset, Herring Cove, Provincetown, Massachusetts.
My life has changed immensely, but it's still life—all the dirty, noisy, inconvenient, and frustrating beauty of it. I’ll keep my eyes full of it as long as I can.
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