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YOU’RE IN THE ARMY NOW – Diary of a Survivor of Swallowing Boot Camp

by Stephen Alan Boyar

[NFOSD note. Join author Steve Boyar on his journey through an intense ten-day swallowing boot camp at MD Anderson Cancer Center. Experience with him his hope, determination, reality, and reflection on the drive to regain what most people take for granted, an ability to enjoy a meal, coffee, or drinks with family and friends. A journey update will be posted daily over the next eleven days.]

After a long career as an advertising copywriter and marketing executive, Steve is reinventing himself as a writer of stories for children. He recently earned his Master of Fine Arts degree in Creative Writing from The New School, and is working on a picture book and middle grade novel. He also tutors kids in writing and English. Steve can be reached at stephenalanboyar@gmail.com.

© 2013 Stephen Alan Boyar

NOTE: PROGRESS WILL BE ADDED TO THE BOTTOM OF THIS ARTICLE

Click here Day #1 Session 1
Click here Day #1 Session 1 (continued)
Click here Day #1 Session 2
Click here Day #2 Sessions 3 and 4
Click here Day #3 Sessions 5 and 6
Click here Weekend Furlough
Click here Day #4 Session 7
Click here Day #4 Session 8
Click here Day #5 Session 9
Click here Day #6 Session 10
Click here Day #7 Session 11
Click here Day #8, Reflections (the end)

 

DAY 1

Session 1

Zero eight hundred hours. Let’s get this show on the road, Swallowing Boot Camp at MD Anderson Cancer Center. They will toughen up my radiation-damaged tongue, and I will swallow again—eat again—like the rest of the world.

Part of me doesn’t want to be here. I ate for eight years after treatment for cancer of the base of tongue, so it’s not fair a new enemy showed up and I have to fight another battle. Six years I’ve endured NPO (nothing by mouth) status and a PEG feeding tube. That’s what pushed me to enlist.

The Sarge appears, Dr. Kate Hutcheson. I salute and say, “Reporting for duty—ma’am.” I’ve met Dr. Hutcheson before. She did the modified barium swallow test when I flew in two months ago from New York City to Houston for consultations with her and her commanding officer, Dr. Jan Lewin. Dr. Lewin did a videostroboscopy to examine my tongue base. First time I ever had that done, which Dr. Hutcheson then used in conjunction with the swallowing test to devise my Boot Camp regimen.

My History

Today Dr. Hutcheson reviews my swallowing history. In 1999 I was diagnosed with squamous cell carcinoma of the left base of tongue, Stage IV, which metastasized to my neck. I was treated with external beam radiation, modified neck dissection, and brachytherapy (radioactive pellets placed directly on the tumor site). Seven years post-treatment, unbeknownst to me, I began to aspirate and lose weight. With thickened liquids and the omission of dry solid foods I was able to eat for nine more months until one day I landed in the hospital with aspiration pneumonia. The infection was so bad I had surgery to clean out my right lung. I agreed to the installation of the feeding tube, and took the NPO directive like a man. After all, what was more important, eating by mouth or living?

My Boot Camp Goal

Dr. Hutcheson explains how she modified Anderson’s standard Boot Camp program to match what she feels is a realistic goal for me. We will aim to improve the efficiency of my swallowing and attempt to expand the volume and range of what I can swallow safely, without aspirating.

I hear what she says but I refuse to let go the idea that the improvement will be so great I will be able to eat and drink normally.

To be continued . . .

Day 1 image (PowerPoint) v2

 

 

Day 1, Session 1, continued

First Drill

Sarge affixes stick-on electrodes to my throat, which will send signals to a computer display of the intensity and elapsed time of muscle activity involved in swallows. I swallow hard, the cursor jumps above the line representing my goal. This technology is called sEMG (surface electromyography). For Dr. Hutcheson it’s a measurement tool, and for me, a kind of biofeedback that shows me a representation of my swallows. The sEMG will also facilitate a connection in my mind between a desired, or undesired, result and what I did, or did not do, to produce it. I gather this will be a powerful agent of change, because I had biofeedback for migraines, to great effect. My workout goal today is 60% of my best swallow effort. The goal will be increased gradually in future sessions to 80%—similar to the principle used in cardiovascular training.

Swallowing training at Anderson is like working with a personal trainer, and Dr. Hutcheson uses this analogy. She thinks I did a good job with the sEMG, and learns that because of dry mouth and radiation damage, my tongue goes through a lot of movements to scare up enough saliva and muscle readiness to achieve subsequent swallows within short intervals. I thought those movements enabled swallows. I feel busted, and learn, from seeing their frantic jumps on the screen and by Dr. Hutcheson’s explanation, that the movements are like a soldier taking aim too long before pulling the trigger with an injured finger. An additional training goal is to eliminate the jumps.

Second Drill

I’m glad to move on. Dr. Hutcheson introduces me to the Iowa Oral Performance Instrument, or IOPI (“eye-OH-pea”), another kind of biofeedback device that measures the effort I make with the front and back of my tongue, and will be used to measure my performance during exercises to strengthen the tongue muscle. We’re going to beef up the unscathed, front half of my tongue, and harness that firepower to add umph to the backward thrust a tongue uses to push food or liquid safely past the airway and down the esophagus. This is like building up the upper body of a soldier who needs to compensate for paralysis of the legs.

I understand the concept but the goal seems improbable. Nevertheless, I am in Boot Camp, and will do whatever the Sarge orders.

The IOPI sensor, or “bulb,” is like a stubby plastic bullet, flat at the end and bulbous at the front. The bulb is filled with air, so it has resistance and a little give, and connects with a tube to a hand-held control box. When the bulb is squeezed, the effort registers on a column of nine lights. The top light is green, and the others are red. After learning how to set the machine to my goal, I place the bulb on top of the front of my tongue and squeeze it to the roof of my mouth, and then repeat near the back of the tongue. I’m to keep the green light lit for three-second repetitions. And I thought arm raises and bicep curls were hard.

Reality Check

Two months ago, Dr. Lewin showed me video images of my tongue base when she did the stroboscopy. The surface quivers and bubbles like a nuked battlefield. Atrophy and nerve damage, Dr. Lewin had said. The difficulty of achieving consistency with the IOPI readouts convinces me of the diminution of my tongue strength.

Before today, I understood intellectually that my tongue was weakened. Today I own it as a reality, as I own the precise dysfunction of my swallowing pattern because I’ve seen a representation of it on the x–y axis of the sEMG readout. I learn from Dr. Hutcheson that lots of other people have these late-stage radiation side effects. And now I totally understand why Dr. Hutcheson told me two months ago that I will always need my feeding tube.

Boot Camp is not as much fun as I thought it would be.

To be continued . . .

BoyarMyIOPIandme100313

My IOPI and me.

 

Day 1, Session 2

New Therapist

Sarge had said she likes changing up the coaches a private works with. Each coach has a different style, and I might pick up something from one I didn’t get from another.

Ms. Denice Perez is definitely different. I’m to call her Ms. Perez, or Denice, but not Sarge. She takes me through the sEMG exercises, spending more time on each rep than Dr. Hutcheson did. I tell her I’m having trouble doing a maneuver Dr. Hutcheson showed me in the morning: anchor the front top of my tongue to the roof of my mouth, and push the swallow off that. So Ms. Perez demonstrates the mechanics of a normal swallow—the tongue goes up, back, and down. I put this together with Dr. Hutcheson’s explanation that we want to compensate for the atrophied back of my tongue with the healthy front.

Eureka

Ms. Perez also mentions that my take-aims use a lot of energy. Eureka! I sure don’t want to waste energy. I want to use it to get more pudding in my belly. Perhaps I do have control. Ms. Perez gives me an exercise for the hotel room. I’m to swallow on command at timed intervals, with or without the help of a saliva substitute. Maybe I should call her Sarge anyhow.

I have learned more in one assessment consultation and the first day of Boot Camp than I learned in three-plus years of swallowing consultations with a famous doctor as well as with speech pathologists at two other world-renowned hospitals.

 To be continued . . .

BoyarPuddingtreat100313

Pudding—yum!

 

DAY 2

Session 3

The Sarge, the Dr. Hutcheson one, asks if I have any questions. I’m still having problems swallowing successively without excess take-aims between swallows. She says we’ll work on that.

Posture?

I tell her the instruction yesterday to sit up straight, shoulders back, head level made me aware of something I never knew. Posture has an effect on swallowing efficiency. She reinforces this. All the muscles in the body are connected, and studies have shown that good posture puts structures in the mouth and throat in proper position for swallowing, whereas slumping constricts swallowing. Bingo. The only professionals on my care team who have ever talked about posture are my physical therapists. I’m going to do a good job for Dr. Hutcheson, and hold my shoulders back and head up in a neutral position. Big lesson.

Down to Work

We start with the IOPI. Sarge sets my workout goal at 70, rather than 60, percent of this morning’s baseline measurements, which are higher than yesterday’s.

“What did you do, grow a new base of tongue overnight?” she says. “You’ll be sorry you got such high scores.” She always makes me laugh.

For the sEMG drill—which is called the effortful/adapted supraglottic, or hard, swallow—Dr. Hutcheson tells me we’re going to try them using squirts of thickened water. She has talked with Ms. Perez, who told her I did well yesterday using a saliva substitute during the workout. In today’s exercise, I do better than yesterday. And then, at the end of the session, something astonishing happens. I’m able to interrupt my tendency to take aim over and over before a swallow. I tell myself that frantically taking aim wastes energy; relax your throat, concentrate, don’t let the moving cursor on the screen pressure you; trigger the swallow with the top of your tongue pushing off the roof of your mouth. As in a session with a personal trainer, the trainer can only coach. It’s the trainee who puts everything together.

Another assignment: do one set of IOPIs when I’m off-duty, and keep a log.

 

Session 4

Ms. Perez met with Dr. Hutcheson during lunch. These people are as obsessive as I am.

Failure

IOPI first. My readings are lower than this morning’s, but the training goes well anyhow. Hard swallows with the sEMG next. My baseline readings are around half of this morning’s. Maybe I’m fatigued, something I never like to admit. Maybe I’m a failure. Ms. Perez confers with colleague Ms. Leila Little and they agree that what’s important is not consistency of baseline but working at 70% of that session’s baseline.

On to the Mendelsohn, which Ms. Perez started yesterday. Swallow hard, hold, hold, squeeze, squeeze, keep the cursor up, up, up for three seconds, relax, finish the swallow. This could strengthen what’s left of my swallow squeeze. Yesterday I could barely do it. Today, I can. I would never have as good a sense of what is happening in the mechanics of my swallows without the sEMG readouts.

Ms. Perez tells me I work really hard in therapy. I no longer think I’m a failure.

Battle-Fatigued

Back in my hotel room, I feed myself a can of formula. I am forced to acknowledge that learning new ways of swallowing and exercising my tongue are hard work. Who knew?

Time for a nap.

To be continued . . .

BoyarHardswallowwsquirt100313

Hard swallow with a squirt.

 

 

DAY 3

Session 5

I’m worried. Both my morning and afternoon sessions today will be with Ms. Leila Little. I’ve been told that although she’s the nicest person, she’s the meanest therapist—a true drill sergeant.

Forward, March

Turns out Ms. Little is nice, and respectful, and caring. She’s also tough, in the goals she sets and lack of interest in rest periods between reps and sets. What, no rest? However, when she sees me fatigue during IOPI time, she orders me to rest briefly.

At the start of the hard swallow exercises, Dr. Hutcheson comes in and asks permission to allow a visiting doctor from China to observe the session. Why not? I believe in education. And let’s see if I can maintain my concentration in the presence of another stranger. Bonus: I learn from Ms. Little’s banter with the doctor that tricks like doing a chin tuck or rotating the head before swallowing can be viewed as crutches, and don’t therefore do anything to strengthen muscle function. Those tricks are in my old repertoire, and now I know why Dr. Hutcheson doesn’t want me to use them.

With Ms. Little coaching, I achieve my 70% goal for half the reps, better than yesterday, when I did less than half. And she pushed me to 40 reps. I respond well to the drill sergeant, and she is pleased.

Then Ms. Little tells me she wants fifty reps this afternoon. I groan. She tells me I can do it.

 

Session 6

What a Trooper

I did it! Fifty reps, ten sets of five, and I met my 70% goal on all but maybe ten reps. That means, Ms. Little says, the hard swallow goal will probably be increased starting Monday. We never get to the IOPI. I guess I’d better do those twice in the hotel room.

You’re in the Army now.

To be continued . . .

Army drill sergeant push ups

Five more reps—go.

 

 

WEEKEND FURLOUGH

Saturday

Last night, before I went to sleep, I wept for the base of my tongue.

Here Come the Blues

I’ve tried so hard not to feel sorry for myself since the radiation revealed itself as a double agent. When I was made NPO and had the feeding tube installed, I was not happy. But I was so focused on being alive, I suppressed the feelings of loss, and adapted well. Pneumonia, ally of the turncoat radiation, became a new enemy, which I could defeat by not eating.

I hate having a tube hanging out of my stomach. But that feeding tube is as reliable as an umbilical cord.

I had learned from Dr. Lewin, the first time I talked with her, that if you don’t use a tongue weakened by radiation, it will get weaker from nonuse, just as any muscle will—not to mention the ongoing effects of radiation. The one thing I did keep doing, however, was chew gum to help me speak despite dry mouth. I kept swallowing my saliva, and I did not get pneumonia.

Over time I became disgruntled with my NPO life sentence, and consulted a new swallowing guru and speech pathologist in New York City. Each swallow was potential death—that was my mindset. To help me over this fear the new practitioners taught me how to close my airway when I swallow. I figured how to effectively clear pooled residue. Then, under supervision, I tippy-toed into the land of half-teaspoons of apple sauce and nectar-thick juice. I did not get pneumonia. Later I progressed on my own to pudding. I did not get pneumonia. Months later I graduated to oatmeal without asking. I did not get pneumonia. But there I plateaued, and came to the Anderson Boot Camp.

 

Sunday

I cheated again. Didn’t do my IOPI or swallowing-on-command exercises Friday night or all day yesterday. I was exhausted and fed up with hearing once again I would never be able to survive without my feeding tube. My wife and I went to a movie, and it helped. But the dent in my mood was short-lived.

Here Comes the Pain

Today I wake up with a migraine. Always starts in my neck in the area where I had surgery, progresses up the back of the neck, and digs in behind the left eye, sinuses, and forehead. Persistent are the physical pain; the disappointment knowing that the radiation is probably continuing to debilitate my base of tongue; and the sadness as the reality of the functional loss sinks in.

I never expected to be hit so hard by enemy fire after the battle with the cancer.

I don’t care. I will not give up.

To be continued . . .

BoyarTothemovies101213

To the movies.

 

 

DAY 4

Session 7

Dr. Hutcheson asks how I am and I tell her. She acknowledges the enormity of the loss, saying that eating is a basic instinct and one of our greatest sources of pleasure. Also, most patients are exhausted after the first sessions.

A New Drill

I confess I did not do my IOPI exercises in the hotel room. It’s okay to take the weekend off, she says. Phew—I thought the Sarge would give me extra IOPIs.

And now that’s exactly what she does, but not as punishment. How long can I keep the green light on with steady pressure of my tongue? I do pretty well. At session end, Dr. Hutcheson tells me I did a good job this morning. I smile like a little kid getting a pat on the back.

In the second session, she will scope me so that I can see what happens inside when I swallow. She remembers that I am lactose-intolerant, and assigns me to shop for soy milk during the break.

To be continued . . .

BoyarTryingforgreen100313

Trying to hit the green.

 

Day 4, Session 8

Reconnaissance

With a lieutenant, Mr. Ray Jackson, assisting, an endoscope used to perform a FEES (Flexible Endoscopic Evaluation of Swallowing), and monitor where I can see it, Sarge gives me a lesson on the physiology of the airway defense system and surrounding swallowing mechanisms. I learn how to squeeze my vocal cords closed, and see what that looks like in real time. This biofeedback also shows me the connection between my effort and its effect. I have an aha moment. So that’s why if I even think about speaking, I feel what I’m trying to swallow about to breach the opening of my airway.

Now Sarge instructs me to squirt 2 milliters of thickened soy milk into my mouth and swallow. “See how some of the white stuff pools in the vallecular space, in front of the vocal cords? And see how a tiny bit has penetrated the larynx?” If I don’t push out the penetrated and pooled liquid by coughing or clearing my throat, it could get into my airway and thus my lungs. And so on with unthickened soy milk and then green-tinted apple sauce.

I’m distressed to see the pooling. I want food and liquid and me to live again in peaceful coexistence.

Q&A time. “What would happen if I ate a much thicker consistency, like pasta . . . or a hamburger? Hamburger’s no good, right, because it would crumble, not cohere?” I ask.

“Right,” she answers. “But you can try some pasta with marinara sauce, if you want, at the next session, and let’s see what happens.”

Wait. Did I hear that right? Pasta with marinara sauce has been a fantasy pulling me forward on the quest to eat again. Oh, to feel the warm glop and taste the earthiness of the pasta, squish the fresh tomato, smell the garlic. Will it go down? Will it go down the wrong pipe and kill me?

Back to My Bunk

Again, I’m tired after two sessions. I nap and dream Dr. Hutcheson and I are exploring somewhere outside. I’m in search of a souvenir endemic to this region. She knows where to find it, and we walk along a path and turn down a long, dark alley. I switch on my searchlight. She says it’s only dark for awhile. We go up a flight of stairs in what seems to be an abandoned building. The shop with the item I want is on the second floor. A woman—the proprietor, I assume—comes out of a room and asks if she can help orient me in this foreign land? If you look out the window, way out near the horizon, she tells me, you can see the Statue of Liberty. We go inside the room. The proprietor is caring for a baby while another woman holds back a cat with extended claws from hurting the baby.

My interpretation: Dr. Hutcheson, like all great teachers, reinforces my wish to be in charge. She is my guide. I’ve come to a place where you can see liberty on the horizon, a place with some danger and people who help guard me, vulnerable as a baby, from that danger.

What form the liberty takes in reality remains to be seen. Nevertheless, I am excited. New assignment: bring pasta marinara to tomorrow’s afternoon session.

To be continued . . .

Iron Dome (Airway Defense System)

Airway defense system.

 

DAY 5

Session 9

Ms. Denise Barringer, Major Sergeant, this morning, Manager, Section of Speech Pathology & Audiology. I expect a tall, overbearing woman. Petite is more like it, with no trace of nastiness. I can’t bring myself to call her Sarge. She has a report of yesterday’s sessions with Dr. Hutcheson. Do these people ever sleep?

Bull’s-Eye

I do great on the IOPI and am rewarded with a “Good job” message. Then, during the sEMG exercises, Ms. Barringer focuses me, as the others have, on the pattern of swallows. Somehow, with my tongue anchored on the roof of my mouth, I pull it all together and deliver a perfect pattern—“Swallow, hard and fast; try not to pump [take aim too long] and swallow, hard and fast; swallow, hard and fast; clear, swallow hard and fast.” I see the pattern on the screen, each apex above the line representing my goal. I connect the picture of the desired result with the feeling of how I produced it.

I forget I’m in a funk.

Then another surprise. During Q&A I tell Ms. Barringer I find it difficult to motivate myself to do swallowing exercises on my own. She asks if I know about the iPhone/iPad app iSwallow. Now I do. She shows it to me and says she will confer with Dr. Hutcheson whether they want to include it in my home program. My assignment: do exercises in the hotel two times because today begins my transition to home care, and I have only one session.

Call me Sergeant Steve.

To be continued . . .

Steve Boyar (post 9) - Slide 2 sEMG

My sEMG “before.”

Steve Boyar (post 9) - Slide 1 sEMG

My sEMG “after” (perfect pattern).

 

 

DAY 6

Session 10

“I brought the pasta, I brought the pasta!” I tell Dr. Hutcheson.

“Do you mind if we keep it in our refrigerator and reheat it tomorrow morning?” Pasta dream delayed. Darn.

Deployment Orientation

Today the focus is on orienting me to my home program, outlined on a log I’m to fill in as I go. Dr. Hutcheson wants me to focus on the two exercises she believes will have the most effect on the efficiency of my swallowing—all the IOPIs and hard swallows. She thinks she’s giving me a rigorous regimen, but since she has also released me from all the exercises I had been given by others, the new regimen looks difficult but not overwhelming.

My big question for the day is If the back half of my tongue is atrophied and denervated (nerves deactivated), is it possible to restore some of the muscle function in that area with the IOPI exercises? Answer: to a very limited degree. We’re trying to compensate for that loss by building up the front of the tongue to be able to push food and liquid past the larynx (voice box) and into the esophagus. The back of the tongue I’m exercising with the IOPI is actually the back of the tongue front. I say I’ve seen the enemy, the atrophied base, and want to fight against the destruction.

Disagreement with the Sarge

“I actually don’t like the war analogy,” says Dr. Hutcheson. “I like to focus more on the function you have left and work on maximizing that.” I hear her, yet I still find it helpful to think of myself as a soldier in battle. The question remains, Is the enemy my wrecked base of tongue or remnants of the radiation that maimed it after the battle against the tumor? If the latter, a new reality hits me. It is impossible to fight an enemy that goes undercover successfully, and even if you find it, there is no known agent to neutralize or destroy radiation.

Over ten sessions, it’s been harder and harder to think of any of my Boot Camp therapists as sergeants. More like master coaches who use tough love as an integral part of their methods. But every other aspect (except being trained in a group) of the boot camp analogy holds—this is intense, tiring, designed to bring about rapid physical and emotional strength and endurance, to put me through the mill to a realization of what I can and cannot do to help my swallowing.

My poor tongue, you’re the only one I have. I’m sorry I smoked. I’m sorry you were attacked and maimed during the battle of 1999. I’m so glad some of you is healthy. I will take you to the gym three to four times a week.

To be continued . . .

Home exercise log (image - small)

Home exercise log.

 

DAY 7

Session 11

The Impossible Dream

First up, pasta! This could chase the blues away for good.

Scope in. Ms. Evelyn Anderson, Lieutenant, prepares a forkful—here it comes. Dream come true. I will hightail it back to the hotel room when the session is over and gobble down the rest of that pasta.

The pasta feels like a ball of shredded, damp rags. I cannot get the bolus out of the vallecular space—the pasta is stuck in my throat. Dr. Hutcheson asks if I want to try to take another mouthful and push the first bolus down with the second. This is called “stacking,” and, Dr. Hutcheson had explained, is the way I get oatmeal and pudding down the hatch, and why after the last swallow I cough and gargle out pooled residue. Or, she asks now, do I want to hawk it up?

I choose hawk it up. Too dangerous to let the stuff sit at the threshold of my airway.

That water dripping from my eyes: is it from allergy or disappointment? At least I tried; at least Dr. Hutcheson let me try; at least she left me in control, like in the dream. You see danger, you make the best decision you can. At least now I know, now I understand my swallowing reality completely. This gladdens me. But the disappointment hits me like a surprise attack.

Marching Orders

Sarge commends me on my progress in Boot Camp. I like that she’s proud, but I don’t want it to be over. I don’t want to be my own sergeant. I don’t want my hopes dashed.

We review my marching orders—my home exercise plan and beyond. I ask how we will measure any improvement in my swallowing efficiency. She answers by doing another modified barium swallow test and also by observing if the amount of stuck residue I cough up is less than now.

Walking back to the hotel room, I decide I need a new fantasy.

“What?” asks my wife.

“I don’t know. But it’s no longer pasta.”

I’m in the Army now. A good soldier never gives up. I will make the Sarge proud.

To be continued . . .

 Bowl of Pasta (w sause)

Pasta marinara—yum.

 

DAY 8

The Day After

Boot Camp is over. I’m on my own. I won’t miss the drills, but I will miss the drill sergeants—or should I say coaches? I don’t like being pushed, but I always do better—in the gym, studying, writing—with a coach.

Reflections

How do I feel in retrospect?

1. I’m glad I did Boot Camp even though the reality check forces me to forget pasta marinara.

2. Now I get it, why the disability is permanent and the radiation damage possibly ongoing.

3. I still respect my swallowing guru and speech pathologists in New York City. They helped me survive and get to where I was before enlisting. But I’m in the Anderson Army now, relieved to have found this cadre, and comforted knowing that they get it, the physical, psychological, and social aspects of dysphagia. They treat many people with dysphagia caused by the late-stage side effects of radiation, which gives the Anderson group, and me, the perspective to see that my problem is common. It’s reassuring to know it’s not my fault and I am not alone. Others have been blindsided by the “gift that never stops giving.”

4. I had a crash course in swallowing function and dysfunction and, in my case, what function remains and how I can exploit it. Intact is my sensation of when something other than air is about to enter my airway. I’ve seen X-ray and video images of my swallows, as well as biofeedback measurements of my swallowing exercise goals and efforts. I know what to try next  to strengthen the unscathed part of my tongue, which hopefully will increase my ability to get more mush down the right pipe and out of the wrong one.

5. Mush like oatmeal and apple sauce—that consistency is my model of safe food. No thin liquids, no solid food. With the knowledge and self-confidence I’ve gained, I can continue to improve my quality of life by experimenting with what I can eat safely.

6. I am eating for pleasure. The distinction from eating for nutrition is important, because implied are two critical things: acknowledgement that the primal urge to eat is vital, not frivolous; and, two, barring a new treatment discovery or invention of a bionic tongue, I cannot eat for nutrition safely. Sad but true.

7. The timing was good. I enlisted now because I had heard Dr. Jan Lewin, Anderson’s Section Chief for Speech Pathology and Audiology, speak at a SPOHNC (Support for People with Oral and Head and Neck Cancer) conference. And also because I was ready to face reality. A good general like me—even when he must play the role of a private—wants to know as much as possible about his army’s strengths and weaknesses so he can surround himself with the best resources he can muster.

8. I’ve got a bunch of great new friends and supporters in Texas.

9. It’s hard enough to get to the gym. I don’t really want another exercise regimen eating up my time. But I sure don’t want to waste my investment in Boot Camp. Nothing else I’ve tried has given me so much so fast.

10. The education component of Boot Camp alone is worth the price of admission.

Statue of Liberty

        At the end of the day, the dose of reality is hard to swallow. And yet, there is a certain liberty to reality. Once you’ve had a brush or two with death, any other loss with less consequence is easier to accept.

Thumbing through a guidebook to local restaurants, I find a picture of my new fantasy—pancakes with poached eggs. Mixed with lots of syrup, I think they’ll get down my gullet safely. I can smell the earthiness of the cakes and taste the sweetness of the syrup.

I will soldier on.

Statue of Liberty