More than 79 million Americans are infected with human papillomavirus (HPV). While it primarily affects women, studies have shown men 45 and older are significantly more likely to get head and neck cancer from the virus (Michael Douglas being the most famous example). As such, we recently talked to one cancer survivor — 56-year-old Jon Book — about his experience.
A little over a year ago, I started having a sore throat. Two weeks later, I looked into my throat and noticed my tonsil was really swollen. Then I started getting swelling in my neck. I’ve got a picture of me and my daughter at a UCLA football game, and you can see the lump in my neck. At that point my son said, “Dad, what’s with your neck?”
I went to the doctor, who measured it and said it was 9 centimeters. After a biopsy, he told me, “It looks like you’ve got cancer on your tonsil.”
“Are you sure?” I asked.
Cancer wasn’t even on my mind.
My wife was with me, and we were just staring at him. Meanwhile, he’s matter-of-factly talking about next steps and all the doctors he wanted me to see. It was like white noise. You’re sitting there trying to take in the fact that he just told you that you’ve got cancer and you have to go through chemo and all this stuff. It’s like, What the hell?!?!?
I’d never heard of HPV before. The doctor, though, explained that HPV can be a sexually transmitted virus that leads to this kind of cancer. He talked about how it’s becoming much more prevalent in males my age, though they don’t know why.
I have no idea how I got the virus. It could’ve lain dormant in my body for some time. The doctor, in fact, told me he couldn’t know where or whom it came from. They don’t get into that too much anyway. It’s all about treatment — stuff like, “We’re gonna put a feeding tube in you right away, and the radiation is gonna be really difficult the first six weeks.”
Needless to say, that’s not reassuring to hear.
My wife, though, did a bunch of research and found that the Moores Cancer Center at the University of California, San Diego, was at the forefront of this specific type of throat cancer. We went there instead, and they began treatment in December 2016 with chemo. That was to take the swelling down in the neck, which it did pretty much flawlessly — within two treatments, it really went down.
Overall, the first month wasn’t bad at all. I wasn’t feeling any negative effects until I was in the shower washing my hair a couple of weeks later, and a big clump came out. It shakes you up. You think, Wow, this is really happening.
Throughout this time, I didn’t tell people I had HPV. I’d just say that I had throat cancer. Some people would ask, “Oh, that’s the thing Michael Douglas had, right?” He’s the reference point because he says he got it through oral sex. When he or HPV would come up, I’d just say, “Yeah, it’s a sexually transmitted disease, and one of those unfortunate things.” If you tell them it’s throat cancer, they leave it at that.
Eventually, the radiation started, too. They make this plastic mask of your face and bolt it down over your head. You lie down, and this machine goes around your head and blasts heavy doses of radiation right on the tumor. I did that five days a week for seven weeks.
It was awful. You get heavy dry mouth and can’t taste anything. Since you lose all enjoyment of eating, you don’t do much of it. That’s when I lost almost 40 pounds. A couple more weeks and they probably would’ve put a feeding tube in me. I really didn’t want that because sometimes the feeding tube becomes more or less permanent. For instance, I have a friend whose brother has been battling this type of cancer for a long time and still can’t gain any of the weight back so he’s on a feeding tube again after two years.
But what made me feel the worst was going to get chemo and seeing the rows of people going through the same thing. You just go, “Oh god, I don’t have it bad at all.” At least compared to the people they bring in via ambulance — and especially the kids. I’d sit there and think, I’m not gonna complain whatsoever.
I paid for the treatment out-of-pocket for the first three months — or probably 15 or 20 grand all told. It definitely put a strain on my finances. I was an independent contractor at the time, and therefore, uninsured. I was paying for treatments with my credit card, because if you pay cash, they’ll give you 50 percent off. So rather than $2,500 for a visit, it was $1,250.
Of course, it’s not great when you say, “I don’t have insurance. I’ve got to pay cash.” They look at you like, “What do you mean you don’t have insurance, you loser?” When I went in for my fourth or fifth chemo treatment, an administrator even came in midway through and said, “We called your credit card company — it’s not going through.” She was basically gonna pull the needle out. The nurse was great, though. She said, “No, we’re not stopping this treatment. He’s gonna get it, and you guys can figure it out afterward.” Another time, one of the doctors said, “Hey look, they didn’t do too much this visit, so I won’t charge you for it.”
But overall, I’m lucky: As of about three months ago, I had a scan done and they didn’t find any cancer in my body. Honestly, I almost feel in better shape now than before all this happened. Going through the treatment breaks down your cells, and when you regrow them, it feels like you’ve become stronger internally. And no joke, when my hair grew back, it was thicker and curlier. My taste was a work in progress for a while, but even that has come back about 90 percent of the way, which is much better than for most. My weight, too, is just about back to normal. I’m not saying I’m completely cured right now, but my outlook is really good.
I am, though, sure about one thing: Go out and get vaccinated for HPV! I remember when my daughter was 10, they wanted to give her this HPV shot. We thought, Why would they give her this? She’s not even close to being sexually active. Now, of course, I couldn’t have a more opposite opinion.
— As told to Adam Elder
