A Regular Guy: My First Oley Conference

Stephen Alan Boyar

On board the plane from JFK Airport to Orlando with my wife, Melba, waiting to take off for my first Oley conference, I sigh. I will never overcome my anxiety about getting through Security. I remember the scene from two hours ago.

 

There’s Something Wrong with Me

Steve and Melba relax between conference sessions.

I’m certain I will be thrown in jail as a suspected terrorist. To defuse the tension I know I should announce to the TSA (Transportation Security Administration) agent ordering me to step into the body scanner that I have a feeding tube. I don’t want to. But I do—even though it’s none of his or anyone else’s business that I have a hole in my stomach and a tube hanging out of it.

Again the agent barks, “Step into the scanner.”

Either he didn’t hear me or chose to ignore me. I tell him I have a letter from my doctor. He takes it but doesn’t read it, doesn’t even look at it.

 “Move into the scanner.”

They’re going to freak out when they see the tube looped and secured by a tube holder taped to my chest. This will look to them—as it would to me—like a bomb.

Steve with his granddaughters Susannah & Allison.

Outside the scanner, the same agent demands I identify my bags exiting the conveyor-belt scanner. One bag has not come out, the one with my valuables. I tell him I want to wait for it, but he orders me to follow him, now. He needs to see the feeding tube, and so, he tells me, he’s taking me to a private room. How thoughtful.

He walks ahead of me, fast, slowing down to kibbutz with a coworker. He’s not paying attention to me. I could run back, grab my wife, and flee to the safety of home. She’s overseeing the testing of each and every medicine bottle, can of food, bottle of water, syringe, and plastic cup in my medicine wheely. She is practiced at remaining calm and checking that every item is returned intact so I won’t go crazy on the flight from hunger, thirst, or the lack of pain medicine.

I was ambivalent about going to an Oley conference anyhow because I don’t want to be identified with people who I see as disabled. I didn’t want to see myself—or allow anyone else to see me—as anything less than perfect. A gift of my upbringing.

But this year I had a change of heart. I’d been to another organization’s conference, also focused on illness, and one of the presenters has since been instrumental in changing my life for the better. I believe in education.

So, back at the airport, scratch the escape plan. I really want to go to the Oley conference—see what I’ve been missing. I say to the agent’s back, “Do I really need to be without shoes?”

He stops, looks at my feet, and says, “I didn’t know you left them behind.” It’s my fault. “Go back and put your shoes on.” What am I, his kid?

In the private room, I feel like the next step is a cell. Another agent joins us. I guess he’s the witness who will make sure the first agent behaves according to the rules. Or the two of them are in cahoots, happy for the opportunity to steal . . . what? They wouldn’t want to yank the tube out of my stomach. I doubt they could find a fence interested in hot feeding tubes.

I tell No. 2 I have a letter from my doctor. He’s less interested in reading it than the first.

 “Show me the feeding tube,” says No. 1.

This is it. The moment of truth. I understand why they want to see the tube. They need to confirm I’m not wired to blow up myself and everyone else on the flight. I do appreciate their diligence. However, if they only knew how I’ve fought for my life over the past fifteen years, they’d escort Melba and me to our gate with an honor guard.

I was treated in 1999 for squamous cell carcinoma of the left base of tongue, with metastasis to at least one lymph node in the left neck. Beam radiation, a neck dissection, and temporary radioactive pellets on the primary tumor site defeated the cancer. My team had saved my life but, unbeknownst to them or to me, they planted a time bomb that would destroy my quality of life. Eight years after treatment, I was diagnosed with late-stage, radiation-related dysphagia and dysarthria. I could no longer eat or drink safely or speak clearly. In 2007, aspiration pneumonia nearly did me in. My reward for surviving this second brush with death: a PEG feeding tube and ban on swallowing.

These TSA agents are just doing their job, and they don’t care about me, my double-survival story, or how their blasé attitude makes me feel. Like Peeping Toms, their eyes are glommed on to the shirt buttons I’m undoing. I lift my undershirt and show them my tube. They’re satisfied. I feel violated.

Melba and I allow an hour at the airport for this ignominy. Surely everyone going to the conference with a tube or intravenous port has had similar experiences. I wonder how they cope.

 

Alone No More

At the conference on Monday I join a focus group conducted by representatives of a company that makes nutritional products, including my formula. The reward is immediate. I meet a dozen or so fellow tube-feeders, as well as some of their caregivers, in a more intimate setting than the big conference meetings. I no longer feel like an outsider.

We focus-group participants are diverse—in ethnicity, age, hometown, type of tube and formula, and diagnosis that necessitates a tube. Most face significant challenges to get sufficient nutrition and hydration to survive, as well as to find healthcare providers with the skills and knowledge to help. The majority are hooked up to a feeding pump, many for the entire day. Most cannot take in enough formula the way I do, by “bolus feeding,” infusing food a few times a day quickly, using a funnel and gravity. I have to carry a can or two of food and supplies when I go out; I have pain intermittently around the tube entry site; I endure day surgery every year or so for a tube replacement. In the future, however, when I am sad about having a tube, I will remind myself of this. If I think I’ve got it bad, most of my new tube colleagues have it worse.

 

So Many Children

People for whom this is their first Oley conference gather Monday evening for fun and games and tips on how to get the most out of the conference. The atmosphere feels like a birthday party for one of the many children of all ages running around for an hour free of the ever watchful eye of a parent. There are soda and chips, pretzels and candy for those who can swallow safely and for caregivers. Balloons kiss the low ceiling, with ribbons that invite a child to claim ownership.

Three toddlers capture my attention. One, a little girl, maybe three or four, scurries under a table and then around the legs of adults. She’s playing with a boy a little older than she. Wherever she moves, so goes her feeding tube, as if it were the wire of an old-fashioned microphone following a performer. She never trips on it. It’s long enough to go where she goes and somehow stay connected. I want to find her mother and father and tell them I think it’s wonderful they don’t overprotect their daughter, and let her be a child.

The boy wanders near the table where I’m sitting with my two adult partners in a silly but effective game devised to facilitate connections among strangers. The boy tells the woman next to me how old he is, and then asks how old she is. She answers, “Fifty-three,” and he remarks how high this number is. I want to tell him I’m seventy-one—really surprise him—but he only has time to honor me with a hello and smile as welcoming as I’ve ever received. A person with a feeding tube is the same person he or she would be without it.

The third child who captures my attention is a boy in a wheelchair, or maybe it’s a customized stroller. His eyes are big and drink in all that’s happening. I wonder if he’s able to talk because I don’t hear him say anything. His mother treats him as she’d treat any child. She’s to deliver a speech the next morning in which she will share the harrowing journey she and this beautiful boy have been on to keep him in this world.

These children will probably never have the years of pleasure I had before cancer treatment—eating my wife’s glorious cooking, quenching my thirst from a water bottle, bingeing on my mother’s maple walnut cake with thick chocolate icing at every one of my birthdays, even as an adult, until the advent of the tube.

How can I ever feel badly for myself again knowing there are so many children who rely on feeding tubes for sustenance? If they adapt with acceptance and grace, so can I.

 

Eye Openers

I think I know all I need to know about my tube and its accessories. But I don’t. I learn a great deal from the talks beginning on Tuesday at the main sessions, at a tube feeding workshop, and during conversations with the people in the Exhibit Hall booths. Here are the highlights.

Melba, happy for Steve when he earns an MFA in Creative Writing.

• New tube connectors are coming (transition is expected to be complete by January 2016) to help prevent fluids from being infused into the wrong tube. Now I know to ask my surgeon if my next tube replacement will have a new connector, and my home care company if it has accessories manufactured to the new standards. I’m also happy to learn that the new connector joining my tube with the funnel piece of a 60 mL syringe for bolus infusions will no longer be able to separate. No more accidental spills.

• Swimming while on nutrition support can be more dangerous than I ever knew. To allay the worry, you can ask how often a given pool or other body of water is tested and what the contaminant level was at the last reading. Alarmed, I seek clarification from the Oley folks. Swimming is particularly dangerous for people on IV nutrition, because bacteria and viruses from the water can enter the bloodstream through a catheter. However, people with a well-healed g- or j-tube site (such as me) can swim without much worry.

• I once was delighted to have a low-profile button placed. Gone was the embarrassing bulge—I looked and felt like a regular guy. But that night, after dinner, the button failed. Failed! Formula spewed everywhere. End of dream of not looking to the world like a bionic man. Now I had the privilege of undergoing another procedure to remove the defective button and replace it with a traditional PEG. I was not a happy camper. Swore off buttons, I did. At the conference, however, I’m encouraged to learn from reps of a number of button manufacturers that failure of a button valve is rare. Two reps offer to contact my gastroenterologist to see if my hospital would offer their buttons. One of these vendors is giving away the cutest stuffed bears, each of which has a button in its belly. I choose a brown bear. One grandchild will be very happy. Or maybe I’ll put it on my desk as a reminder to reconsider my prejudice against buttons and one day have one that works under my T-shirt, too.

• One of the few regrets I have about the Oley conference is that I didn’t speak with the rep from the company that sold the faulty buttons to my hospital. I had filed a report and they promised to investigate and let me know their findings. They never did. Never apologized for putting me through another procedure. Never offered to pay for the second operation. At the time, I was busy, so I dropped it. Here, at the conference, I could have had their ear. But something held me back. I didn’t want to compound my vulnerability about wearing a tube by being branded a troublemaker. Aargh!

• My doctors and nurses had taught me not to slide my external tube bumper too close to my belly. But not until hearing a gastroenterologist’s talk at Oley do I understand why there is sharp pain from the inside wall of my stomach when the outside bumper is too tight. [Editor’s note: If the external bumper is pressed too tightly against the belly, it will compress/squeeze the tissue in-between the external and internal bumpers. This can cause a sharp pain and can lead to complications such as fluid leakage and buried bumper syndrome.]

• I never knew about the possibility of puréed formulas. I might like to try them, so I ask a presenter if Medicare covers these formulas. A fellow participant comes to the audience mic and adds to the presenter’s answer. While Medicare coverage is possible, it usually necessitates a fight—an important piece of information I learn painlessly and quickly.

• One day at lunch, I take advantage of the Oley invitation to talk with a professional sitting at a table with a sign, “Ask Me, I’m a Dietitian.” After I had learned in swallowing therapy how to do swallowing exercises safely, I was given the green light to eat and drink a little for pleasure—applesauce or a few spoons of a smoothie, for example. Starting about a year ago, I’ve been eating a small bowl of oatmeal daily. But I’ve been craving variety. So at the conference I speak with a dietitian, and she gives me some great ideas as alternatives. More importantly, she talks to me like I’m a regular guy, not someone with a disability.

• In a hallway conversation, I learn from a caregiver how to expel air from my stomach out the tube. On the flight home, painful heartburn sends me to the lavatory to try this technique. Although I unintentionally wash the mirror with a squirt of stomach water, I return to my seat heartburn-free.

By the middle of the Oley conference, I sense that I am learning more than practical information—something intangible and as important, if not more important, than the nuts and bolts of living with a feeding tube. But I can’t put my finger on it.

 

I Want to Win

Wednesday is Raffle Drawing Day, last day for the exhibit booths. In the hotel’s cavern of a lobby, I spot a man lounging near the Oley registration desk feeding himself. He’s holding up, as if it were the Statue of Liberty’s torch of enlightenment, a funnel filled with formula and connected to his tube. I smile. That could be me—is me when I can’t find a private place away from home to feed myself. Always I feel exposed, but he seems unperturbed, as if feeding himself through his PEG is as natural as eating a sandwich. I’d like to ask him if he’s embarrassed doing that when he’s not surrounded by his Oley family. But I don’t. I’m still self-conscious about my tube, still feel it marks me as a freak. And the last thing I want is to risk being asked what the big deal is. I just want to be a regular guy who’s got nothing wrong with him.

Well, at least I’m going to win one of the raffles, maybe two. Great prizes—tablets, gift certificates. While I wait for the drawings to begin, I stop by the booth of the company giving away those bears with PEG buttons in their bellies. I tell the rep my brown bear is lonely—do they have a white bear left over? The rep says the only bears left are the two on display. Someone has spoken for the white one but if I return at two o’clock and it has not been claimed, then I may have it.

I sit with Melba and watch her eat lunch. The prize I really want is to eat again. Yes, I’ve adapted well to my feeding tube, but, really, I don’t like it. I want to eat by mouth. And if I can’t ever again, then I want a new tablet, or another bear, or both.

Soon I spot the same little girl who had been running around at the event for first-time attendees. She’s dancing near her mother, who’s holding the white bear under her arm as if it were a baby. They’ve got to be the ones who came back to pick up that bear.

How could I ever want two bears when this little girl had none? I’m glad she got it.

The raffle drawings begin. Finally.

I don’t win the first.

Or the second.

Or any.

I feel empty. Why? Because I lost the perspective I had gained in the focus group and at the party for first-timers. The image comes back of the little girl with her new white bear tucked safely under her mother’s arm. My perspective returns like a movie house lens twirled into focus.

And then I get it. Every single one of us “tubers” is a winner. A big winner.

Our prize is life.

 

A Valuable Tip

I’m ready now for the rigmarole of getting through Security at the airport. I don’t care if a TSA agent wants to see my tube. I’ll even demonstrate how it works, explain why I don’t have to worry about what I eat because my formula is the perfect mix of protein, carbs, fat, and vitamins and minerals. I bet he can’t say the same about his diet.

Last full day of the conference, Melba and I are at the picnic. Again I watch her eat but my yearning to eat doesn’t have the bite it did yesterday.

Some folks I had met in the focus group sit down to chat—the sister and brother-in-law of a young man who needs constant care. I’m touched by their dedication, and reminded of how my big sister took care of me, when she was alive. The woman shares with Melba her grandmother’s recipe for pralines.

As Melba and I leave, a young woman at another table introduces herself. She’s connected to two pumps in the storage area of her electric scooter, one for food, the other for pain medicine. Her mood is up. We share Airport Security war stories, and she gives me a tip. Why not approach a TSA agent before getting on the body-scanner line and tell her or him that I prefer to be patted down?

Next morning, at the airport, that’s what I do. And it works like a charm. All the agents we have contact with are courteous and respectful. Their focus is on being careful during the pat-down not to dislodge the tube or cause me any pain. They’re not freaked-out—they haven’t been surprised by an image on their scanner screen of a tube that looks like a bomb taped to my chest. I’m not worried I will be thrown in jail.

On the return flight, I reflect. The most valuable benefit of attending my first Oley conference is a multitude of new connections. Connections with compatriots for whom a feeding tube is normal . . . with clinicians and caregivers who do not regard us tubers as disabled . . . and connections with myself, a regular guy lucky to be alive because of the tube hanging from a hole in his stomach.

If you’d like to contact Steve, email him at survivorsteve25@gmail.com. To help defray the costs of traveling from his home in New York City to the conference in Orlando, Steve applied for and received one of several first-time Oley conference attendee travel grants. These grants are made available through the generosity of several Oley sponsors, who feel strongly that the conferences can make a difference in the lives of those who attend.

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LifelineLetter, November/December 2014