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A Father's Brave Battle With Throat Cancer He never smoked cigarettes. His stage IV throat cancer was caused by HPV.
Go Into the Light For me it begins with the sea. Our annual August pilgrimage to Cape Cod is what we -- my wife, Hilary, and I with our three-year-old son, Tynan -- look forward to and look back on all year.

We arrive, pale and blinking, from our tiny New York apartment with its lone window and 15-minute patch of sunlight on some days, in some months. We've rented the same house in Chatham every year since Ty was born. It's our chance to "go into the light."

After the steep drop down from the cliff to the beach, we see rolling dunes dotted with beach grass, scrub pine, primroses. Breakers stretch north and south, the wave line churning with shells, crabs, birds, seaweed, fish. Seals float on their backs out past the surf line, playing. On the gentle bay beaches, Tynan and I play airplanes, running along the surf's edge, arms out, crashing into and through the wavelets. I have to be careful that he doesn't get too far away from me, since even these bayside waves can capsize him. I take him into the water and we float, and he laughs and laughs.

Our friends Peter and Katy are here, too, down the road. Sometimes we picnic with them on the beach, sitting in our chairs looking out toward Spain, reading the paper, having the kind of elliptical conversations one can have with an open horizon. We listen to summer music mixes: Sly Stone, War, Madonna, Mungo Jerry. There is bodysurfing and oysters and baseball and martinis, kites, lobster, Frisbees, lighthouses, kids playing. These are the best days of the year.

In our cottage with the screened porch and outdoor shower that August two years ago, I have just finished brushing my teeth and gargling with lidocaine. I've had a sore throat for several weeks, and it hurts to swallow. But now that I've had the anesthetic, I can drink some coffee and watch the silver-green shade play on the water, the wind like a rope skipping on the surface. It's my new ritual: lidocaine to start the day, maybe some more before lunch. At the end of the day, when it really hurts, I pop a Vicodin. All this and maybe a little gin to help me sleep.

"You know, this throat of mine," I say to my wife one morning, pausing amid gargles, "it's just not getting any better. I probably have cancer or something."

My beloved, who suffers no fools gladly, hands our son a sippy cup and rolls her eyes. "Hypochondria will give you cramps."

Back in New York, weeks after our vacation, I am in the office of an ear, nose, and throat surgeon. The antibiotics and steroids we tried didn't help, and nothing came up in X-rays, but my throat is hurting more and more. So this doctor puts his hand in my mouth and reaches way down my throat. It feels like his elbow is about to hit my teeth. He nods and sends me for a biopsy, and now we have the results: I have a tumor at the base of my tongue, a stage IV squamous cell carcinoma. Throat cancer.

Day One Day one is absurd, surreal. I am fumbling for my poor wife's phone number at her new office, in a job she began only a few days ago. Since our seaside vacation, I have kept the sequence of throat tests, probes, and analyses to myself. Hilary was busy being unhappy at her old job and then looking for another job and then starting the one she found, and I did not want to add to her worries.

Most biopsies of the mouth and throat come back negative. Until yours doesn't. Now I am about to become a safe and fall on top of her life, starting with the conversation we must have, something like "Jeez, honey, I know you're busy over there, but it looks like I need emergency surgery and then a few weeks or months of radiation and chemotherapy. More later -- maybe we could talk about it in the elevator before we relieve the babysitter."

This form of cancer is known to be aggressive, and the tumor is growing. Odds are discussed: chances of survival, of recurrence. The surgeon says he can remove the tumor and that we should, as soon as possible. There are decisions to be made, he adds, and there are risks. Nerve damage, disfigurement, loss of speech, problems swallowing and chewing. But William Portnoy, MD, is affable. He is a facial reconstructive surgeon for the New York Rangers hockey team. He inspires confidence.

All the while, I'm thinking, What did I do? What did I do? Everybody starts with that, I suppose, because the diagnosis seems so unlikely. I never smoked. As one of my oncologists told me, sotto voce, "This used to be a VA hospital kind of thing, you know." Smoke a pack a day for 30 years, wash it down with a pint of vodka -- that's how you get throat cancer, and maybe lung cancer too. But here I am, a 45-year-old male with a graduate degree, a business strategist in the technology industry. Someone with my profile, a nonsmoker under 50, rarely got this disease.

Until recently.

Maura Gillison, MD, a researcher and professor at Johns Hopkins University in Baltimore, was among the first to study the link between the growth of head and neck cancers among younger nonsmokers and certain types of the sexually transmitted human papillomavirus (HPV). It's the same virus that causes the majority of cervical cancers and warts. The risks are scary because the virus is really common, even in teenagers. Twenty million people in the United States have some form of HPV, and over six million more get it every year. It can be transmitted through oral sex, and both men and women can be infected. Of the more than 35,000 people who will be diagnosed with oral cancer this year, 25 percent of us will connect our diagnosis to HPV infection. As my treatment continues, I'm struck by how nobody seems to know about any of this.

There's more to the tongue than most people realize. It extends far below the part that we see, and it assists in speaking and swallowing and affects breathing. You need a tongue to whistle. Babies need to master their tongues before they can talk. It's been called one of the strongest muscles we have. It has tens of thousands of receptors in tiny openings that allow into our system the characteristics of whatever our mouth touches: a perfectly seared steak, a velvety red wine, milk gone bad, a bitter medicine, a baby's kiss, a lover's body. These conduits carry data to our brains, information that conveys "taste" in all its meanings. It's who we are, what we like, what we are like -- that experience a little too sweet, that one not savory enough, that one just right.

So what is the virus that causes cervical cancer doing in my throat, creating a tumor on my tongue, leaching into my lymph nodes, threatening my larynx and my life? According to Dr. Gillison and others, the answer goes back to the late 1970s, when the medical community began to notice the spread of HPV. "It is linked to a change in sexual habits," she says simply.

Often Symptomless, Highly Contagious Between the Pill in 1960 and AIDS in 1984, more people had more sex and more kinds of sex. These children of the '70s, who grew up with Nixon, divorce, the hostage crisis, and oral sex, are now in their 40s, and the cancer is beginning to strike. Just as HIV was sneaking into public awareness, other, less publicized viruses were also proliferating, including herpes viruses and HPV -- often symptomless and highly contagious. Millions of people over the past 30 years have been playing, in effect, the ultimate shell game. After all, no matter how many people practice safe sex during intercourse, almost nobody has oral sex through latex.

Once you hear that your cancer is linked to HPV, you review every item in the file, looking for the moment you made the Wrong Choice. But it's impossible. It's not one interaction; it's my entire life's web of meeting people, everything that took me to various experiences and relationships.

Without a singular mistake to obsess over and regret, I settle for parched fear and guilt. They say that the risk of contracting this cancer can be hundreds of times higher in people who've had more than five oral sex partners in their lifetime. How many times had I been exposed? How many times had I exposed others?

Hilary's Pap tests have been normal, but that doesn't mean she's negative for oral HPV. Will she be okay? Is someone out there dying because I went to the I-Beam in San Francisco one night in the '80s? I think about the braided capillary links between people and realize that I cannot answer no with any certainty. Living with this is as hard as living with the cancer.

The odds of my defeating this kind of cancer are at least 60-40 in my favor. I am youngish, and we are considering an aggressive treatment, so the odds are probably even better. Still, I don't know how much longer I have, and I won't have any assurances until I get through the five-year recurrence window. Recurrence is bad. The odds swing against you, and pretty steeply. They all say that, from the doctors and radiation specialists to the nurses and orderlies.

Those who claim that fear is not part of the equation are kidding themselves. I have to work through all this, find myself a position. Will I be passive and detached? Research, study, learn, engage? Do I even want to win? I don't really know how I will be affected. Will my voice change? A piece of my tongue will be lost, and who knows how much larynx and throat muscle. Will I have a voice? The clinic rooms we visit are filled with sad and frightening patients with disfiguring scars and artificial voice boxes. What will I look like? Will I be left with a life I want? I need to get to a zone in my mind that will take me through the process.

I am not perky even in normal situations. Indeed, I am already among the medicated, for depression and anxiety, and I have been going to therapy since 1990. So, taking leave of my family before surgery, I have a lot of thoughts, and not all are about the beauty of another 30 years on this planet. I am wrestling with all the things I have not gotten done and what existence is even for, or meant to be. I kneel down to say goodbye to Ty. "Are you very sick, Daddy?"

I look at our son, a three-year-old standing in front of a hospital door. I am not sure what he can know or feel in these moments, or what he will remember. He likes Derek Jeter and Hot Wheels and waffles. And the Kinks: I sang him "Waterloo Sunset" every night in his crib.

"Yes, pal, but the doctors are going to help me," I say.

"Can we play airplanes again when you get all better?"

Airplanes. Our little game at the beach. Running, arms out like wings, splashing through the surf. Crouching there on this cold November morning, I look at the face of a little boy and know what I need to do. I've got to get us back to the beach. Tynan has taken all the big, twisty, scary "issues" off the table and replaced them with one vision: my family and me, back on Cape Cod. To have that again, no matter what should happen later or in between, is something I can work for. From now on, next August is the focus. Why think further?

An hour or so later, I am lying on a gurney in my ridiculous gown, the first of the scores of IVs pricking my arms. Two circles have been drawn on my neck with an orange Sharpie: The one on the left says yes; the other, on the right, says no. Faces swirl as the drugs announce themselves. It is the first moment of everything that comes after. And lying there, I see the mixed bag of life in a piece, full of disease and pain and regret -- and my friends and that water, and, especially, playing airplanes again. What a beautiful mixed bag it is.

"Are you ready?" I hear my surgeon ask. It's the last thing I remember before my new life starts. Let's go.

A few weeks later, after the surgery, I shuffle from oncologist to oncologist, shopping for a place to have radiation and chemotherapy. One side of my neck looks like Dizzy Gillespie when he's blowing his horn. Frankenstein-like stitching wanders under my chin, across my neck, and under my left ear. I am reminded of TV maps of the Ho Chi Minh Trail. There is often blood in my mouth, and I can't move my head or my jaw very well. Getting opinions is a huge amount of work -- for the patient. Copies of my slides, surgeon's notes, biopsy report, etc., are needed by every hospital we visit. For some reason, none of these guys can talk to the others or exchange these materials among themselves. Requests for copies must be made in writing by fax, and we don't have a fax machine. I suppose it's all about privacy, and a good thing, but as a software-and-database guy, the inefficiency galls me.

One leading doctor is a bit condescending. "I never would have operated on a tumor that size," he says. There is some debate as to whether the cancer has spread through the walls of my lymph nodes. If it did not, I may not need the chemo, which would greatly ease the treatment. It's also a big question in the recurrence derby. This doctor, a diva in a white coat, tells us that he won't have an opinion worked up from my slides unless I commit to him and his hospital. "Too much work for my team," he concludes.

When I think of all I go through in my professional life to earn someone's business, I am so livid that I consider writing a letter to his hospital board.

But being treated this way finally makes me realize we are shopping for care. These people work for me. I also consider drafting an RFP (request for proposal) and sending it to the hospitals we are considering: "Here are my questions; here are my slides. Your opinion and recommendations are due by 6 p.m., along with your cost estimate." But I don't. I do vow that I will not select anybody who doesn't understand that I am the customer.

A combination of postoperative chemo and radiation is the most aggressive plan, with the most pain, but gives me the best odds. Given that I am young and otherwise healthy, most of the people I consult agree that I should go for it.

Then come the warnings. "The chemo is really tough," the radiation guys say. "Cisplatin is a very toxic drug to your system, with ringing in the ears, bleeding, nausea and vomiting, infection risk …"

"That radiation," cluck the chemotherapy oncologists. "Everyone talks about the chemo, but in the end it's the radiation that hurts -- the sores, the loss of saliva, sometimes even the inability to swallow …"

After a few appointments, Hilary sums it up better than any clinician: "First we'll hit you on the head with a hammer, then we'll light you on fire."

The First Chemo Session In late January, my treatment begins at Memorial Sloan-Kettering Cancer Center. Nancy Lee, MD, is the radiation oncologist. Without fail, each of the residents and nurses I meet who are in her charge speak about her achievements and talent in the hushed way that I recognize from sports. She is a stud. Although she is slight in stature, her demeanor and focus might just intimidate the cancer out of me.

Matthew Fury, MD, will be my lead oncologist. He is humble, quietly confident, straightforward, and infinitely patient. At one point, I see him come into the clinic to spend extra time with an elderly woman who is confused about the treatment and clearly in discomfort. He doesn't see me, but I see the time he takes with her and realize that I am in the company of someone who has found medicine as his calling.

My first chemo session is an all-day event. I report at about 8 a.m., when the clinic opens. They begin by running saline and fluids into an IV until you need to urinate. That's when they hand you a pitcher with volume markings and tell you to measure your "output." All around me that morning I see men of various ages and sizes, young and old, some with beards, MBAs, truck drivers, prostate cancer here, lung cancer there, shuffling their IVs along, murmuring a discreet number to their assigned nurse. Then every couple of hours the head nurse sweeps in for a report, and all the duty nurses call out to her from across the room with the running urination totals of their patients: "Bachman, 16 milliliters; Hernandez, 22; Reynolds, 12; Wilson, 19 …"

When you've taken in and expelled the right amounts of fluid, the nurses come back with some serious-looking plastic pouches. So serious and toxic that they wear gloves to dispense the stuff and ask you to repeat your name and patient number out loud to them; then they repeat it to each other, one reading off the name on "your" bag to the other. It's an unnerving ritual. I'm reminded of the feeling I had before kickoff in high school football, when you're about to turn downfield at full speed and smash into someone. You know what you're about to do but not sure how it's going to turn out.

For me, the side effects of all this hit the second day, just as I finish the first full week of radiation: dizziness, dehydration, nausea, ringing in the ears, lights in the corner of the eyes, even hallucinations. And I have five more weeks to go.

For the duration of treatment, we move closer to the hospital, into a two-bedroom apartment on a high floor in a new cracker-box tower. I am in one bedroom; Hilary and Ty are in the other. There are two bathrooms, which is the point. I spend a lot of time in there. Blisters line my gums and the inside of my cheeks. I have no saliva, just a preponderance of phlegm and brackish stomach acid. I am awakened as phlegm builds in my throat and halts my breathing. I get up to urinate four, five, six times a night and need to gargle each time to keep my throat clear, so I never seem to sleep more than two hours at a time.

The treatment continues, and the skin on my neck becomes singed. My hair falls out in a monk pattern at the back of my head, so I have it cut very close. Keeping the swallow function is a critical fight, but as I lose weight, the hospital urges me to use the feeding tube they've implanted with one end in my stomach and the other strapped to my chest. They tell me that I can put a Big Mac in a blender, grind it up with protein shakes, and pour it all into the tube. I don't want to have to learn how to swallow again, and I don't want to watch liquid cheeseburgers pour through my tube. I vow to keep eating no matter how much it hurts.

But anything with real flavor is torturous. Salt, lemon, sharp tastes of any kind are excruciating. I am reduced to water and protein drinks, soft eggs in the morning, and sometimes a bit of chicken potpie or the rediscovered joys of tuna casserole at night. I have so far resisted the fentanyl-based pain patches I am offered, but chewing becomes the most painful and difficult thing I can imagine. I swab my gums with lidocaine between bites of anything. Sometimes swallowing hurts so much, I almost black out.

We are concerned about Ty. He loves being in the larger apartment, running back and forth, looking out the windows, but he knows something is wrong. I am not going to work, and I am showing up late in the afternoons to collapse in my room. He wants to play with me, and I try, but some days I just don't have it and fall asleep in the middle of giving him a horsey ride. We have just hired a new babysitter as well, so he has a new sitter, a new apartment, and me acting like a limp rag. One night I am getting sick in my bathroom, and he awakes and starts to cry. My poor wife. My poor kid. All I have the energy to do is lie still and try not to bother them.

Each morning I haul myself out of bed and say goodbye to Hilary and Tynan. I try to eat something. Then I take a shower and clean my feeding tube and my mouth sores, get dressed, and, exhausted, get on the subway for yet another treatment. It is about 10 a.m. and rush hour is over. I get off at 68th Street. I will never forget walking down the slope of that street, with the February wind howling off the river, feeling hollow and broken, like a bell that swings but makes no sound.

I cave and tell Dr. Fury to give me that pain patch, which makes it a little easier to get through the day. I force myself to confront my microwaved tuna casserole every night. I force myself into the hospital cafeteria, where just the smell makes me retch, but I go through the act of chewing and swallowing and drinking by mouth rather than by tube. All the years of playing sports: Little League from ages 8 to 16, contact football from 10 to 18, lacrosse and running and lifting, tennis, boxing workouts, and sparring. My entire athletic career comes down to this -- moving my jaws, fighting through the pain in my mouth, defending my ability to swallow a little food.

I know I can make it when week four comes and the nurses say, "Still taking food by mouth? That's unusual."

Just when I think I know how to do all this -- how to wait for my radiation, and nap, and drink my two liters a day, and microwave my tuna casserole -- it's over. It is mid-March and I am finished. And then it gets worse. The chemo and radiation have residual effects, and the bottom drops out for me in mid-April. I have no energy, I'm nauseated, my ears are ringing, the skin on my neck is burned and rippled. My hair has turned gray, and I can't remember things. I have "chemo brain." My balance is lousy, and sometimes I use a cane. I've lost about 50 pounds, from my usual 200.

After three months in the two-bed, two-bath apartment, we move back to our little studio. It seems darker and gloomier than ever. Without the structure of treatment every day, I am neither here nor there. Still too sick to contemplate a return to work, I am irritable, in pain, torpid. I must wait for PET scans that will check for any leftover cancer cells. Drinking enough water is a challenge, and in late April I wind up in the hospital, dehydrated. The nausea and pain come in waves.

But I force myself to take walks. My sleep becomes less jagged, and I taper off the pain patch. Gradually, instead of sleeping in the afternoon, I can play with Tynan when he gets home from preschool. I take him to the park on weekends so he can ride his Spider-Man scooter. Neighbors and playmates do not recognize me in my diminished state, with short hair and a Foreign Legion cap.

Living with what we've all been through somehow gives my wife and me the courage to buy an apartment. In the summer we find a small two-bedroom in a neighborhood we like with pretty good schools. We deliberate and agonize. The subprime disaster sprouts as we are trying to lock in a mortgage. It takes my mind off cancer and scans.

The thought of going back into treatment if the PET scans reveal a recurrence is just awful. Finally they take the scans. On August 18, 2007, we close on the apartment. Two days later, Dr. Fury says I'm clean and can go back to work. That Saturday, we pack a car and drive out of Manhattan, headed to Cape Cod.

We have one of the best times of my life. I buy wet suits for Tynan and me, as protection against the cold Atlantic. I take him in on his Boogie Board and tow him around. We have a string of beautiful days, great afternoons with our friends on the beach. And we play airplanes in the surf. I have a strange feeling as I peer out toward Spain from under the umbrella. A flashback to the winter, to my walk down 68th Street, and I have a reverse déjà vu. I had been dreaming of this for so long. It is what kept me moving, into that cold wind, to be here, in this very moment. And when these grand two weeks are up, I find I can live with whatever happens next.

While few people with HPV get oral cancer, the number is likely to keep rising, says Maura Gillison, MD, of Johns Hopkins, if only because HPV is so common -- 20 million Americans are infected, with 6.2 million new cases each year. So far, there's no cure and just one test -- and only to detect HPV in a woman's cervix. Only a biopsy can tell whether an oral cancer is linked to HPV, but a test to spot high-risk oral infection in men and women and a vaccine for men are both in the works. What you need to know:

• Most people with HPV infections don't have any symptoms. At least half of sexually active men and women may become infected in their lifetime. About 23 percent of women ages 14 to 65 have high-risk HPV, including 35 percent of 14-to 19-year-old girls.

• Gardasil protects against up to 70 percent of the HPV types that cause cervical cancer, but it's unknown if the vaccine protects against oral infection in men or women.

• While most infections clear up on their own without patients ever knowing they were exposed, the consequences can still be severe. For instance, one type of HPV raises the risk of oral cancer by 3,200 percent.

• The virus spreads through any form of sexual activity, and condoms can't fully protect against it. Having more than five oral sex partners boosts the risk of HPV-linked oral cancer by 340 percent.
The m(oral) of this story?

Only have oral sex with a spouse you know doesn't have STD's.
From a purely natural standpoint, he and many others deserve to die and do not deserve help.
But the days of me thinking like that are long gone...

Time to lock up the TSA-approved plastic knives.

I choked when he mentioned going to the I-Beam. It is a totally skanky place. Self-respecting Gays won't even go there it is so scandalous (even by San Francisco standards).

Lay with dogs and wake up with HPV, apparently. I can't even imagine being his wife. The Brokeback Mountain supporters never seem to count the cost that the spouses have to pay.
For someone with throat cancer he sure is a cunning linguist.
lol  hahah
TheDude Wrote:For someone with throat cancer he sure is a cunning linguist.
How long did it take you to think of that one? [Image: laff.gif]
TheDude Wrote:For someone with throat cancer he sure is a cunning linguist.
[Image: afraidsmiley.gif]
ResiduumRevertetur Wrote:How long did it take you to think of that one? [Image: laff.gif]

I actually was going to use that one in my first reply, but now thanks to Dude, I won't have to take the heat from the stern faces, LOL.
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