Part 151 Passing the test


I struggle to tolerate the wires inside me and try to stifle the urges to vomit as day breaks. The news is filled with the desperation of Khadafy and his crumbling regime, mixed with reports of earthquakes in Virginia. Dr. Bl- doesn’t make her usual and therefore expected early morning round to see me, so I can’t beg her to pull my wires off. I am very tired and impatient to leave. My mucous is getting worse it seems. In addition, the new nurse Sandy is taking some getting used to. She is tall and stocky, towering over me, and seems to have difficulty hearing me. I raise my voice once and she abruptly says, “don’t talk to me that way”. I apologize, and after I adapt to her rhythms, we get along okay. At night, an attractive Oriental nurse comes in to oversee me as I struggle to fall asleep. When I do, my evening is filled with sexual fantasies, so I must be feeling better.

At six a.m., Jim whisks me out out of the sleep that finally came, with news that they will be conducting a series of upper GI studies ASAP. I mentally fake tossing a football to him and ask if it is real ASAP time or hospital ASAP. My nurse this morning is now a sophisticated African American lady who spends as much time tidying my room as housekeeping does. What a pleasant surprise.

Dr. Bl- comes in, clips the bridal on my nose, and once again, some blessed relief from its constraints after I choke briefly as the wire falls inside me. Then its time for the swallow study again. This time, after so many dismal trials and failures, I pass. Dr. B-, Jim, and the radiologist all say no leaks. “Perfect” is the word I have waited so long to hear. “Discharged” follows, and sounds just as sweet.

My lunch consists of cream of wheat, lemon yoghurt, lemonade, orange juice (the sweet stuff that not long ago Bl- wouldn’t let me near) and chocolate ice cream. Under the circumstances, it is wonderful.

By mid afternoon, our car is heading for home.

Part 150 “The hits keep coming”, or, back to the house of blues


Friday morning I awake with the what-has-become-usual nausea. I take a trip to the medical center to see Dr. Bl-. She has just come back from Fort Lauderdale, but takes time in her office to place a drain in my neck to attempt to alleviate my discomfort. She feels this mucous from my throat could be draining into my system and causing the nausea. She looks me over and decides that I need another stay in the hospital due to my illness and due to my apparent state of dehydration. I am instantly dejected, knowing that if I am admitted today I am in for at least the whole weekend (since everyone crucial to my case will be off until Monday).

That day, however, I get some good news. The CAT scan that was done shows no internal leaking in the esophageal area. My swallowing also looks good.

Waking alone on Saturday morning I still have no relief from the nausea, despite a change in meds. The mucous and dry heaves are becoming old, unwelcomed visitors who won’t go home. Dr. Ki- asserts that there may be leakage from my throat site that is contributing to my nausea, and a stent placed in the throat may be necessary in order to catch the drainage.

I have observed that, ironically, as soon as the nausea intensified, my feeding tube quit leaking. I look for a connection, but cannot discover one.

By weekend’s close I am improved a little, but some retching continues. More irony: just when I get cleared to eat and drink, I’m told not to do so at the hospital until this problem is resolved.

Late in the evening I move in the bed and accidentally pull out the j-tube. I push the button until a nurse comes in to assist me, but she refuses to put it back in (liability issues). Instead, we must summon a physician and wait for his orders. I tell my nurse in an irritated tone that if my wife can reposition a tube then certainly a nurse can, but she refuses. Because of the limited flexibility in my left hand that remains from the TIA over a year ago, I am unable to fix the problem myself. Finally the doctor arrives, and with little effort my tube is back in.

Monday morning means the first day back to school for my children. But I am here in the hospital, unable to see them off. Dr. Ki- and the resident Jim appear abruptly in the afternoon intent on placing the stent in my neck to divert the mucous from causing me to be nauseous. I amazingly undergo the fastest and easiest procedure to date. I am the only one in the prep room (causing me to wonder if I have drifted into an alternative universe). A few words from nurses and techs and off I go.

Dr. Bl- would later tell Becah that my entire throat looked great, along with the esophagus, and she thought the tiny hole in my throat would have healed by itself. Dr. Ki- had made the call already for a stent, though, and she would not override that.

Back in my room I am comfortable except for the wires in my nose that drop back into my throat to keep the stent in position. I must often suppress the urge to gag. At midnight I awake, cough and throw up a few times (a mixture of mucous and other strange substances). I celebrate one perk: I am on a clear liquid diet and get my Sprite, which I have been recently craving.

In the early morning hours I watch CNN televising how the Lybian dictator Khadafy is watching his country slip out of his fingers. And I thought I had problems...

Part 149 Standing (but mostly lying) on shaky ground


I wobble up the next day with brief nausea and excessive mucous after awaking twice at night to change leaky bandages. I weigh in at a disturbing 145.9 pounds. I manage to get in two and one-half hours at work before driving to the medical center to see Bl-. Brooke entertains her there (addressing Bl- as “hey baby” on one occasion). We traveled afterward to CC's house, where I rested while the others attended a party at Houston Baptist University. Back at home later I attempted eating a little cheddar soup, fighting off nausea until I went to bed.

The next day looks much the same. I try a little eggs, applesauce, and chocolate milk for breakfast before putting in a few hours at work. A speech therapy appointment follows, but I must leave early due to my feeling nauseous from excessive mucous. I lay and rest at home, taking more Phenergen in an unsuccessful effort to relieve the queasiness. The yoghurt I attempt to eat doesn’t work too well, and by six o’clock I am heaving. This condition has abated little by nine at night. Becah is upset, worrying that this far after my release from the hospital I am still in such shape.

I sleep well through the night but awake still feeling sick. I take more Phenergen, reluctantly so since it isn’t working well and just makes me sleepy to boot. GG goes to the pharmacy to retrieve a new med she had a physician call in the night before. By shortly after noon I am in the grasp of a major volley of heaves. I desperately attempt to climb out of bed to check some work emails, but still get no relief. In the midst of this, I remember it is my youngest daughter’s first day back to preschool, and I wonder how she is faring. Becah is doing a presentation at work. Everyone is off doing something useful, except me. I linger here feeling worse each minute. My weight has actually dropped to a new out-of-hospital low of 143.8 pounds. Just when I ask, “what next?”, the phone rings and my mother informs me her physicians think she has a malignancy in one lung.

Becah arrives at home later, confronting me about being more actively involved with my kids. I feel like life is kicking me around.

One bright spot, though. My blood pressure is a strong 121/85, and my voice is clear.

Part 148 The haunted tube


I get up the next morning, and with effort, manage to drag myself in to work about 8:45. I am totally lacking in energy, and I have to force myself to just get out of bed. Bathing, eating, and getting dressed, activities that we do by rote, now require some effort to complete. I tell my tales of woe to whoever will listen. At 11:00 I leave, heading with Becah and the kids to meet with Dr. Bl-’s assistant, Allison. All morning, from work to the long medical center drive, through the meeting, my tube works perfectly, even as I complain to Allison about how horrible it is and how it won’t quit leaking. We stop in at Quizno’s to get Becah a sandwich and the leaking immediately starts. Becah changes the bandage and we proceed to Dr. Be-’s office for a swallow study.

By now just the mention of this fills me with apprehension. This time, though, I experience some success – Dr. Be- reports that my throat looks good, and I am swallowing 75-80% of my food well (what is happening to the 20-25%, though?). She suggests that I practice on small amounts of smooth, creamy foods initially. She also reassures me that the hoarseness in my voice will improve in a week or so.

We stop for yoghurt before going home. I am exhausted upon returning, this being my most active day out in a long time.

Part 147 The ship leaks, the sky leaks


I may be better in the morning, but little Brooke continues to have fears whenever Becah or I are out of sight. Becah leaves with the kids for a party and takes GG back to her home. While they are gone, I listen to the Beatles’ “Yellow Submarine” and Buffalo Springfield’s “Last Time Around”. I am buoyed by the music and happy that my nausea has abated. However, the tube abruptly leaks profusely. I piecemealed a bandage as best as I could, until Becah returned with the kids and fashioned a better one.

Brooke wants to watch “Lord of the Rings” again. I watch a little with her, enjoying both her closeness with her and, despite all the times we’ve seen it, the movie. Later I view “The Man Who Shot Liberty Valance”, the greatest western ever.

Becah is feeling the stress of caring for three persons, so I prepare dinner for the family. Bree is excited by my efforts, as she remembers the days when I routinely cooked.

After a rough night getting to sleep initially, I rest well during the night (only awaking once!). I am still fatigued in the morning. After hearing a sad sermon at church, I steer the family home in my first driving effort since my hospitalization.

Becah and I lie on the bed, tensions mounting as we discuss my ability (or not) to return to work the next week. My voice is still hoarse when I talk. We take a brief nap, to be awakened by a burst of distant thunder, signaling the coming rainstorm, which is the first precipitation in some time for this arid summer.

After a bit, we start up a game of checkers with Bree. Soon I am detecting a foul odor emulating from the j-tube. GG has returned to stay with us, and she feels this could indicate an infection in the area. I can take no more of this, and make my feelings known. Breanna dances for everyone in the den to attempt to lighten the mood. At the end of the evening, I kick back with more reading of “Watership Down”, and somehow drift off to sleep in a better state.

Part 146 Joybreak

Dr. Be- announces that the procedure went “wonderfully”. Images reveal a healthy vocal cord and entire throat area. She has given me an injection that will temporarily facilitate the functioning of my vocal cord (after which time she feels the cord should completely heal on its own). If needed, Dr. Be- will perform another procedure; however, she doubts this will be necessary.

What is equally amazing with all this great news is the fact that I arrived at the hospital at 11:30, was prepped and with surgery started by 12:50, and am kicked back at home on the couch by 4:00! I watch TV with Brooke, who observes that I am looking better. CC drops by to visit. My tube is not leaking, much to my joy. Maybe the no-stick Ace bandage is doing the trick. Becah changes it at 8:30 – the first change since 10:30 this morning, and I am elated that it looks so good and that we made it this many hours on one bandage.

This is the best day for me in some time. My physical shape is improving, and my mood is downright optimistic.

Appreciate the good moments. Never take them for granted. You never know when you will be sideswiped by changes, like I am the following morning. I awake at 4:30 feeling nauseous, and throw up shortly after. The excessive mucous kicks in again a little later. I feel weaker today (but with a weight of only 142, it would be hard to feel strong). As the morning progresses, so does my coughing up phlegm and feeling ill. I pop Phenergen to attack the nausea, but it has little effect on it and really only makes me sleepier. I drift in and out of awareness (not always a bad thing). By mid afternoon I am reduced to bouts of dry heaving and battling more mucous. I feel warm but have no fever. It is heartbreaking to have such a turn of events immediately following such an upswing yesterday.

Brookie is starting to complain more of somatic ailments. She panics if either I or Becah leave her vicinity for even brief moments. All this is taking its toll on her.

I am worried that all the coughing and retching is hurting my fragile vocal cords. Becah contacts Dr. Be-, who feels that the cords should be sufficiently strong enough at this point to handle stress. Which is good, because by early evening I am heaving again and trying anti-nausea meds, desperately seeking something that will work.

Part 145 “Patient responsibility”


Overnight I am up five times, with too many things spilling out of too many body orifices. For every time I get up, Becah is up too, changing pads and probably wishing she were off by herself in a hotel somewhere. Becah gets in touch with a doctor at the medical center, who suggests we come in tomorrow to remedy the situation.

I watch a Joel Osteen talk on TV about going beyond prayers to a level of commanding in God’s name the mountains of your life to move out of your way.. I exercise a little to try to build my body strength, hoping the physical work will pump up the mental. When resting, I begin reading Richard Adams’ great book, “Watership Down”, an inspiring fable about rabbits in very human situations.

My voice alternates between clearer and more raspy, and I notice this is accompanied by (respectively) easier and more difficulty swallowing saliva. I change the bandage around the tube, which is saturated with liquid, only to repeat the process 15 minutes later.

I make the mistake of paying some bills. I am shocked and upset by the myriad of “patient responsibility” items that have been left for me as not covered by insurance/reimbursed to the physicians. I will have to contest some two to three thousand dollars worth of charges. This would qualify as a mountain that needs moving.

Later in the day bile starts flowing from the tube site. My “nurses” (GG and CC) are still over for the weekend, but they are perplexed. We contact an on-call physician, who will get Dr. Ki- (Dr. Bl-s’ colleague) to meet with the radiologist and us first thing in the morning.

We are up and off at 5:30 a.m. It is 10:00 before we are admitted to the radiology prep room, and after noon before I see my new tube – two sizes larger – installed. I am wheeled back into the dressing room, where it promptly leaks again. Two radiologists are called in to look at it, and neither has a clue of how to fix it. I am livid at this point. Becah calls Dr. Bl-, who can only sympathize. But she hears my voice sounding stronger and suggests we do an immediate swallow study.

I am unsettled at each swallow study. The tension becomes unbearable, worrying if the liquid will go down the right pipe, and how I can finally eat again (or at least drink) if it does. I sip tentatively, afraid of the possibility of failure again. What I get is inconclusive. The therapist says I didn’t aspirate and it looks much better than the last attempt; however, I still get no clearance to eat until the vocal cord procedure is done. After that she will repeat the test.

Before we leave, Jim the resident suggests deflating the balloon in the j-tube (thinking this may reduce the bile leakage). We try this, and arriving at home we find that indeed his strategy at least slowed the leaking. I am shaky and take a bath while Becah takes the girls for yoghurt. While they are gone, my tube comes out, bubble and all. GG and I work together, deflating the tube, tunneling it back in, then re-inflating it with water. Success. We tape it securely so as to not repeat this again.

The tube leaks a little overnight, and I awake very tired even though I slept fairly well. I read some more of “Watership Down”, fortunate that it holds my interest because I am really just trying to divert my mind from everything else. My mother calls with more bad news – she must have her bladder removed, replaced with a new one constructed from her intestines. The surgery will be seven hours, with projected one to two weeks in the hospital and three weeks recovery at home. Strikingly similar in nature to my (projected, at least) esophageal surgery. She will have to put my dad in an assistive car facility for the time she will be hospitalized.

I lie around much of the day with the bandage pressed tight against the tube. I am tiring of all this. I move little because I can’t bear to see the leaking and to hassle with refitting the tube when it comes loose.

The next night is interrupted by a malfunctioning feeding pump. I drag myself to speech in the morning riding on a pulse rate of only 70. Later at home I play the entire Beatles “Revolver” album, and I’m filled with joy. Music therapy. Better than anything. My blood pressure has even soared to 122/63!

The leaking abruptly resumes later as I continue my cleanup kick by rummaging through desk drawers. The problem intensifies before Becah comes in and adjusts the water level. At night, Brooke crawls into our bed and wants a back massage. She also talks about watching some more of (believe it or not) “Lord of the Rings”, but she is asleep before she can.

Part 144 Building bears and no laugh tracks


I start the next morning with diarrhea and a weight that has plummeted back to 146. The home health nurse makes her weekly stop, and the troubled look on her face is enough for me to know what my status is. Becah drives me to my speech session; I am feeling terrible. Becah drops me off and runs quickly to work to drop off a folder with a co-worker. Susan the therapist hooks the electrodes in to start, and I instantly must I lie down, my tube erupting liquid again. Becah eventually returns and toys with the water level and balloon inflation, and I am ready to try again. The tube leaks on and off again all day, but we run a few errands and hope for the best. My voice is erratic still.

The drought continues throughout our area, with perpetually sunny days guaranteed. I am apprehensive the Saturday morning of August 6, because I must successfully make it through my daughter Bree’s seventh birthday party, firing on decidedly not all cylinders. We start strong by dancing in the den to the Beatles’ “Birthday” (that will show me), before driving to the mall to have her party at Build-a-Bear. My niece arrives with big news - she is pregnant with twins. The store is closed, though, because the manager has not arrived and the staff can’t get in. They wind up entertaining 12 excited little girls for 30 minutes outside the store, as I sit and squirm, trying to act like I feel fine. In fact, I am fatigued, and feel very tentative due to probable low blood pressure and worries about the tube holding. The store eventually opens, and I make it through all the bear stuffings and dressings up, as well as lunch at the food court. I realize the three hour stint is my longest sustained outing in some time.

Overheard at the party: Brooke leans over and tells Bree she looks like a piñata and that Brooke wants to hit her and get the candy that falls out. A friend of Breanna’s asks her how old her dad is. I inwardly cringe when Bree tells her. The little girl exclaims, “wow, you’re lucky! My dad is 78”. I breathe easier and smile.

Back at home I make fettuccini for dinner while Becah slices apples and makes bread. CC and GG are staying overnight, along with Bree’s best friend Hannah. Becah has texted her new buddy Dr. Ra-, who feels my tube should be stitched to secure it better. As the laugh tracks abound from the den TV, I am getting Disney sitcom-ed out. It happens sometimes, even to someone who handles juvenile shows pretty well. I suggest they turn on “Big Time Rush”, my favorite show of theirs, because I genuinely like it, but probably at least in part because it has no laugh track.

Part 143 Adventures in j-tubing with radiologists, or, all you really need are some good Golden Triangle genes



The next morning erupts with attention-grabbing events – Becah is late for work, my tube is leaking and the site is swollen, the dog runs out the door and won’t come back, my throat is raspy. But Brett the dog eventually returns, and I have now gone two days with no fever or vomiting. I make the best of a long tube feeding session by writing a report for work. But the tube site continues to leak, and I must apply ice to bring down the swelling.

After the usual mixed bag night’s sleep, I am up at 4:30 to go to the bathroom, and my j-tube just falls out. Becah texts Dr. Bl-, then gets her by phone. Dr. Bl- talks Becah through the process of reinstalling the tube, which she successfully does. However, when I get in the bath tub, the tube promptly comes out again. It is early afternoon before it is deemed acceptable for us to leave for the medical center, and I am wasting away from lack of food. At the center an outpatient physician fills up the “balloon” that secures the tube, then checks the system with dye and considers it fine. I walk to meet Becah in the waiting room, and fluid leaks everywhere. We return to the room to find the doctor has already left, so we wait for his replacement, who tells me I need a larger tube put in but that it cannot be done today. He fills the balloon up with five CCs of water, which stings me the entire time. A male nurse comes in with some special lydocaine cream that instantly stops the pain. We call doctor three, who flashes in from inpatient. He is a handsome, studly-looking guy, and Becah is drooling. He reeks of confidence, tells doctor number two what he did wrong, fills the balloon to seven, and pronounces it fixed enough to go home. I am impressed, only until we reach the hospital exit door, where the leaking starts up again, and I go berserk.

Becah and I spend one and a half hours in rush hour traffic travelling home, me pressing a towel against me to prevent any sprung leaks. We fight and cry about our sorry two years’ plight and how much we need a break from this insanity.

We take Brett for a walk at home, only to have my tube start leaking again. We go back to the house and I lie down. Becah pulls the cord tighter, then accidentally cuts the tape that secures it. She reaches for the duct tape and fastens it back! Radiologists? Who needs them! Her blue collar gene pool from the east Texas “Golden Triangle” is all we need!

Part 142 Too weak to stand?


July 2011 is coming to a close, with hurricane Don petering out somewhere off the coast of Padre Island. My weight has suddenly shot up to a still paltry 153. I wonder how this is even possible. I sleep pretty well on the last night of the month, but still run to the bathroom on two occasions to throw up. Becah leaves in the morning to get the kids from CC’s house. While she is gone, I give myself water, electrolytes, and food. I manage to get out of bed and bathe unassisted. My voice is good. Vital signs are impressive (blood pressure 116/82; pulse 88; temperature normal). All in all, positive.

I get a call later, though. My mother must return to the hospital for bladder surgery. They are taking no chances with the suspicious particles they detected there. Not with her history.

By evening the positive vitals are looking less so, with blood pressure and pulse dropping to (respectively) 97/50 and 73. I am popping a few Tylenols to keep the temperature in check too.

I begin August in this shaky condition as I drive to the speech therapist’s office for a session. I am tired and don’t feel very confident behind the wheel. My voice is erratic, and the tube is slightly leaking. At the office, the therapist continues to stimulate my throat electrically and work with me on swallowing exercises. She looks at me earnestly, but I have a bad feeling that I am not getting anywhere with any of this.

At home I drop to my knees in front of the bedside table to move a magazine, only to realize that I am too weak to stand up. I manage to pull myself up with support. I knew I was in pretty desperate shape, but never realized how much. My j-tube starts stinging, so I lay down again.

Later I solicit Becah’s help in tossing out magazines that have accumulated for months. I am suddenly struck by feelings of the purposelessness of all the things we store up in this life, and how little they really matter. Since I’m a “keeper” by nature, Becah worries if my sudden discarding of objects means I think I don’t have much time left. I have had days where I wondered this, but today, even though I am far from my best, is not one of them.

To prove my point to myself, I work out with Becah, using meager five pound weights, which is at least something. I have no fever all day, again a positive sign.

The next day I creep onward, making a few work-related calls, doing some light exercising. I actually feel stronger today, despite my low blood pressure. Then I make the mistake of checking on our financial status. Some missing statements, and some unexpected bills. I bring all this up to Becah at the wrong time, and suddenly I find myself in combat again. Another money battle. But eventually I see we have acquired some checks that I had not accounted for in financial estimates, and it looks better than I thought. After the smoke clears, we drive downtown to meet with Dr. Bl-, Jacob, Jim, and Allison – the “A” team. They think I look great (or do they believe that just saying it will make it so?). After checking out my tube and neck, the latter which they feel is closing well, someone writes a prescription for antibiotics and Becah and I head home. The car is filled with our talk of hopes, fears, frustrations, and tears that are the remnants of all this.

Part 141 Not paralyzed just stressed


Dr. Be- gives me the right diagnosis. At least it is a more hopeful offering, and I will grab on to that any day. She feels the vocal cord is just temporarily stressed due to the prolonged swelling, and should respond positively to a procedural injection. A general anesthesia and 30 minute session should do it. She will have her staff set it up soon. Dr. Be- directs us to go to the hospital to get the process started. We are elated at the sudden change in fortune!

On the drive to our same hospital (where she, as Dr. Bl- has privileges), I notice that my voice has returned strong and clear. A premonition? Positive thinking on steroids? At any rate, hear it is. We check in for signing pre-op forms, vital signs, etc. A medical doctor who seems to be just strolling through looks me over and is immediately quite concerned. He insists that I am dehydrated and need to go to the ER. Before I know what is happening, I am in a wheelchair and being pushed out of the door. We check in, an IV is hooked up, and fluids are shooting through my body. I stay in an observation room until 2:30 a.m., after which I am taken to a semi-private room. I normally insist on a private room, but we are desperate for something. (What does semi-private mean anyway? If two people are together, it is public, not private). A young man is already in the room. At daybreak he is talking on the phone, calling half of Houston to describe his plight, which sounds like a hernia. He is released soon, though, and the place is mine.

Dr. Bl- comes around in the late morning, confirming my dehydration. She, like Dr. Be-, believes the vocal cord procedure will strengthen my voice and make me be able to swallow again. For the rest of the afternoon I periodically throw up bile at unexpected times. I am feverless until early evening. We are attended to by a kind young nurse who impresses me with her knowledge. My blood pressure is a decent 101/59, up from the earlier 79/56. We wait until evening until we tire of following protocol and discharge ourselves.

I feel better at home, but I always am better the further I am from a hospital. I think even being in a foxhole with bullets zipping overhead would be an improvement.

Part 140 Paralyzed



Early in the morning I get up to let the dog out, then walk into the bathroom, feel an odd sensation of fatigue, the room darkens abruptly, and I am on the floor. Becah leaps out of bed and grabs to support me, lifting me up.

Later I pull myself out of bed and walk a little in the den as Becah gets into her cardio workout with fitness guru Gilad on video. I check my blood pressure, which is a very woozy 78/54. I weigh in at 145. Later I check my temperature – it is slightly elevated.

A visit in the afternoon to my ENT, Dr. Co-, results in a scope that, according to her, indicates my left vocal cord has been paralyzed as a result of the surgery. She has a troubled look on her face, and responds unconvincingly to my desperate questions that it may be a temporary condition. Becah and I are crushed, after all we have endured with my oral difficulties, at the possibility that the surgery that was to have saved me could have damaged me so. The doctor reiterates that, without a properly functioning vocal cord, safely swallowing food will be impossible. The flap on the cord functions in a way that it moves as food comes down, allowing its passage into the esophagus. Without this movement, the food would instead drift into my lungs, and that would be disastrous.

We have a meeting tomorrow with Dr. Be-, the vocal specialist who checked out my mouth once before. Dr. Bl-, who frequently refers patients to her, has already suggested that we consult her expertise.

I am getting more dejected each day, with all the specialists and pros who are unable to resolve my condition. Instead, they refer me to other specialists and pros. I feel like I am caught in a loop, and I’m increasingly nervous when the best of the best are farming me out, looking for answers elsewhere.

Part 139 The dreaded j-tube


I wake at 3:00 a.m., vomiting. Quickly I hit the stop button and disconnect the cord from the feeding pump that has been distracting me all night. I am able to walk unassisted successfully to the bathroom, then return to bed, reconnecting the cord and flipping on the pump to resume feeding before I go back asleep.

Because the j-tube is attached directly to my intestine, food must be very slowly pumped in. I set the speed of intake, and if that speed is too fast, I can plan on getting sick. That means no quick feedings like I got from the g-tube, which led straight into my stomach. That also means hooking myself to the machine and running it all night. Of course, the liquid bags eventually run out, setting off a beeping noise that wakes me and everyone else up. I can augment a little food when I come home for lunch, but not enough to really meet my needs in such a short time.

This has become a miserable routine. The j-tube is this horrible appendage, constantly malfunctioning and a nagging obstacle to my improvement. The site surrounding the tube is perpetually raw and sore. I constantly rub in ointment, hoping for some healing. No matter how I tighten or twist the tube, it leaks. I am forced to often wrap a small towel around it. If I attempt to exercise, it leaks. I walk about too cautiously, for fear of springing a leak. But some mornings I am simply sleeping, still, prone in bed, and it still leaks.

I regret having initiated any of this. I had a tube in my stomach and couldn’t eat orally. But at least I could get quick nourishment, was regaining my weight and strength, had a barely detectable appendage, and it didn’t leak. I could go about my day with some semblance of normality. Not anymore. There is nothing normal about any of this.

The radiolologists, the only persons deemed skilled enough to install the j-tubes, admitted that I would experience some leaking. But they never said constant leaking. I worry that what little nourishment I am getting is trickling away. How much longer before I am whisked back to the hospital at hooked back up to IVs?

Part 138 The well empties


The next week is tentative, etched with minor improvements and sharp setbacks. The speech therapist informs me that some people experience sudden swallowing problems with onset between one and two years following radiation. She performs an evaluation of my skills and reviews some swallowing exercises with me. I am to do these exercises multiple times throughout the days. They are generally the same as the ones I was given in the hospital, and I find practicing them to be challenging and tedious. The therapist will later determine that I am an acceptable candidate for Vita Stym therapy, a technique that employs electrical stimulation of my throat. I am open for anything that will speed up this process.

My temperature ranges from normal to slightly elevated, accompanied by bouts of vomiting (mucous or dark bile) between once and three times daily. I experience dizziness often when I attempt even brief walks around the house. My best weight is a puny 146 pounds. My voice is hoarse and weak when I speak.

One day we return to the hospital to have the j-tube replaced, tired of the leaking and burning and general ineffectiveness of the current one. The process is familiar: lie down and wait for an IV, then more waiting, watching new doctors, assistants, and nurses walk by and wondering when I finally will get this going. The operating room is new to me, and this adds to my discomfort. I am awake for this procedure, and experience apprehension, although aside from a few pokes and prods and sharp stabs, I survive.

Back at my home, I walk up the stairs, assisted by Becah, to rest in the game room, one afternoon as the sun pours through the windows. We watch an episode of “Friday Night Lights”. I am unsteady, so light that I could topple over, and feeling confused. I feel as if I am returning from a long trip alone.

I am sinking into a sea of physical and mental weakness. I am ready to give up. Twice in the week Becah pulls at me, raising her voice and glaring in my face, confronting me about my obligations to be assertive in fighting all this and standing up to my responsibilities to get well for the sake of our family. But where does the strength come from? Since the beginning of all this – one and a half years ago – I always had a supply of hopes and dreams and strength at my disposal. The doctors thought I was tough enough to endure their arsenal of treatment, and they kept the barrage coming. I stood up and took it all. Now I reach into my reservoir and find it empty.

This recovery process is the hardest thing I have ever done in my life.

CHAPTER 10
THE COMEBACK TRAIL




Part 137 There’s no place like home, there’s no place like home, there’s no place like home…



Tuesday July 19 I awake to enjoy my first full day home. Although I awoke several times in the night and was dizzy when I got out of bed, and suffered a periodic low grade fever, I slept very well. I still find myself at 5:45 in the morning running to the bathroom to throw up. I take it easy all morning lying in bed, which is now elevated by bricks under the headboard legs so my body will be positioned at an angle to minimize reflux problems.

I have many visitors today. The assistant pastor from our church and her sister come by with food for the family. The home health nurse makes an appearance, saying that my lungs sound great. I have to clean myself up to look presentable for everyone (as Tina Turner said to Mel Gibson in “Mad Max: Beyond Thunderdome”, “why, you’re just a little raggedy man”). So I call up my hair stylist Shely and ask her if she makes house calls (she will!). My timing is perfect, since she is leaving for Colorado tomorrow. By the time she arrives to cut my hair, though, I have acquired a stabbing pain across my lower rib area. Shely and Becah rush me into the bathroom, and in record time my hair is trimmed. After it is over, Brooke comes in and, seeing hair everywhere, asks if a chicken has been here.

We contact Dr. Bl- by phone. She is perplexed about my swallowing problems, noting that her work was in my upper gastrointestinal area below my vocal cords and therefore should not have affected my upper throat passage for swallowing. Possibly the swelling of my neck from the tracheal intubation is impeding flow of food and liquids. She also suggests that we could have a CT scan of my head to check for possible undetected stroke that could have occurred during her surgery. I ask her when I will be able eat and drink again, but she defers to the speech therapist to make that call. After hanging up, Becah makes an appointment for me on Thursday with a speech therapist at a nearby hospital.

The network of health care professionals expands, and I still am not whole. Panic is starting to set in, and for yet another time I wonder who is in charge around here.

Part 136 Departure


Time to leave the hospital does not always mean that your physical conflicts have been resolved. Sometimes there is simply nothing more at the time that can be done.

It is Monday morning, and I have now been in this facility for three weeks. Much of this time has been a blur of unconsciousness. When I have been alert, much of the time I have wished I weren’t.

Dr. Bl- has come to give me a few wise words and to officially discharge me. I am given orders for speech therapy sessions to try to improve my swallowing skills, and there may be a physical procedure soon to try to correct my distressed vocal cords if therapy is insufficient.

Becah has mixed feelings. It has been demanding on her to leave the children, drive one hour each way, park the car, and see me in the hospital on a near daily basis. However, when I come home in my present condition, she will have to be my nurse, waiting on me and assisting meeting my needs as the children simultaneously tug on her to take care of them.

Ready or not, though, here I come. I am rolled outside as the sun streams over me. I wince, stand with assistance, and step into the car as Becah drives me finally away from this place and sends into history this chapter of my life.

Part 135 Swallow again


On my final weekend in the hospital, I am visited by Dr. Ki-, associate of Dr. Bl-, who is somewhat familiar with my situation. He refuses to fall for my begging for something wet to press against my lips (it is a shame that I am willing to risk aspirating liquid into my lungs just for a taste of Pepsi, but I am).

Dr. Bl- has approved another swallow test for me. I have the feeling that it may be premature, but my desire to eat and drink again, fueled by wishful thinking, means I eagerly return to the test room. After the usual wait (including chat TV interspersed with the standard summer “lose weight fast!” commercials), I am pushed into the test room, where once again the sadly familiar faces of the speech therapist and her physician cohort are staring at me. They are a trace more congenial this time (maybe they feel sorry for me, or maybe their bad press from my last visit returned to them), but still cautionary that I am attempting this too soon to expect a dramatic difference from last time.

I try the array of liquids as before, tilted up on a platform with my head turned slightly to the side. The monitoring staff comment quietly to each other and someone gently shakes his head. Failed again.

I am soon back lying in the hospital bed in my room. Jim is standing beside Becah, attempting condolences. I glance at the wires leading to the j-tube, realizing that I continue to be dependent on this source of nourishment. I still feel that my decision to have the esophageal reconstruction was a mistake, and I am trapped in this condition with no options. I worry that my vocal cords may have been permanently damaged from the surgical complications, and I plunge further into my depressed state. Becah has a difficult time reassuring me that everything will be alright – I can see the distress and doubt on her face. Jim explains to me that my situation is only temporary, describing it as a one step back before the two steps forward. He smiles awkwardly and wishes me well.

Becah and I watch as he leaves the room. We are at a loss for what to do.

Part 134 The swallow test and other failures


I am wheeled down to a special room to have my swallow study. Jacob has promised to meet Becah and I in the room to give us moral support and observe the proceedings. Of course, I can’t just go right in. I must first lie in the waiting room and watch as others are rolled in and out. What is worse than seeing all the other patients in front of you is having to endure the interminable daytime talk shows. This time it’s “Talk Soup”, or something, where a group of ladies like Whoopie Goldberg and Sharon Osbourne are yakking about nothing and taking an hour to do it and making me long for the good old chemo room days of CNN or the Home and Garden show. I pray for a quick exit from all this, which fills me with more anxiety than I already have anticipating the test. My grimaces and sighs are probably mistaken for physical pain, and I am assured by the staff that I will be going in soon.

An aide eventually guides me in the room, where I am greeted (to use the word loosely) by a serious looking speech therapist and a physician who has a look on his face that he is mildly put out by this and has better places to be. The therapist sets a dark tone immediately that I should not expect to be successful in this swallowing effort, since a relatively short time has elapsed since my surgery, and my larynx may not be in good enough shape to handle this. Undaunted, I decide to try anyway. I step out of my bed and onto a device that is tilted so I am leaning back but in a near standing position. Jacob enters the room with thumbs up and I feel a little better, just by his familiar presence.

An array of decidedly unpleasant looking liquid substances of varying consistencies is placed before me and I am asked to ingest small amounts of each. First is a very thin liquid, with a consistency like soda. I hesitate, knowing what is on the line here, then take a tiny sip.

The therapist, physician, and Jason are monitoring my progress, intently watching on a screen. The speech therapist shakes her head, and the physician blurts out quietly the word “aspirate”. Next we try a thicker, milky-like potion. This feels wrong going down too, and they confirm my fears. “Aspirated”, he repeats. The therapist asks if I want to continue. “Yes”, I mumble, but the depression is already settling in. I am given a spoon of a chalky, yogurt-like something which I know as I place it in my mouth where it is going, and Mr. Aspirate goes three for three with his remarks. The fight is stopped in round one.

I am devastated, almost to the point of tears. Becah and I vent our frustration at Jacob, but shift this over to Dr. Bl-, who has just come in and who I have now decided is the villain who caused me to be in this position. We are visibly angry that my situation has turned so ridiculous. Before the surgery, I could physically swallow, but foods would not pass through my esophagus. Now my esophagus functions, but I can’t swallow the substances to begin with.

I ask Dr. Bl. if she can re-implant the button g-tube in my stomach. My stomach, however, has been raised higher in my chest, and placing a tube in its present location would endanger vital organs (like my heart). Relying on the jejunal tube, or j-tube, will be totally unacceptable. This tube in my side bypasses my stomach to go directly into my intestines. I have been told that it sometimes requires suturing to remain in place. It also requires feeding via an Enteral pump, a slow process that takes hours for a sufficient amount of food to be consumed. Not the fast 10 minute lunch that the g-tube allowed. Attempting to take liquids in too rapidly using the j-tube will be guaranteed sickness.

I am truly in a hopeless predicament. Becah erupts angrily, saying “why did we go through all this?”

Why indeed.

Part 132 Inhalers and chances


Two or three times a day a nurse enters with good intentions. It is again time for my inhaler treatment. As I have said before, I never like masks of any kind placed over my face. I am told that my lungs are still recovering, and for my benefit I must undergo these sessions to clear them. A machine is turned on and a mask is placed over my face. Warm, wet mist fills my lungs. This is not as unpleasant as the smell of the added chemical that is supposed to increase the effectiveness of the mist treatments. I cannot describe the smell, but it varies from being mildly unpleasant to downright horrible. I am to hold the mask against my face for what takes about 30 minutes.

The nurse leaves the room, having better things to do than watch me grimace for half an hour. When she leaves, I try to comply, but find myself pulling the mask off for brief periods of time. I put the mask back on, take quick tiny breaths, and then remove it again. Eventually, the time expires, and the nurse returns to hear the machine quiet. After a few final sputters of mist, the session is over. I ask not to be awakened in the middle of the night when my next trial is due. The nurse says that will be fine. I realize that I should participate as directed with every doctor order, but sometimes I simply can’t. I will take my chances by slacking on this one.




Part 133 Real time vs. hospital time, or Einstein was right!


Jim drops by to check on me, and again I suppress the urge to ask him if he really wants to be a doctor, since he clearly would make a good football player. He has another procedure for me that will only take a few minutes of my time. Like most hospital procedures, the decision has already been made for me – my input is minimal. I have been able on occasion to ask that I not be disturbed at three in the morning to have more blood drawn, and sometimes my wish is honored. But today’s procedure is one that benefits me, so I utter “sure”.

This brings about a discussion of relativity. I have been in enough hospitals now to know that when they tell you five minutes, you can disregard that claim outright. Unless of course you are talking the last five minutes of a basketball game. With all the timeouts and delays in one of those, five minutes swells to a much longer period of time. In hospitals, you can’t always get a verbal response from the nurses’ station in five minutes, much less have someone come in to your room in that time.

Part 131 Negotiations, or begging for ice cubes


I have been here long enough now that the days are melting together, each one indiscernible from the next. I seem to be trapped in a place and a mood from which there is no escape.

My desire for something wet touching my lips is becoming unbearable. Becah arrives, sipping on a Dr. Pepper. I lust after it. I have been given strict instructions not to drink anything at all, lest I run the risk of aspirating. Desperate I may be, but I’m not stupid.

But I am desperate. So much that I grab the cup, take a big gulp in my mouth, swish it around, and spit it out. The taste is wonderful to my mouth.

Later Dr. Bl- drops by. As she talks to me, she glances at the extra large cup next to my bed, and remarks with a shock that she hopes I haven’t been drinking it. I relieve her fears by telling her it is Becah’s. I ask her if she will put orders in for one small Pepsi. She refuses. I ask her if I could have orange juice, to which she replies that a glass of it would be more dangerous than the Pepsi because it has higher sugar content. Any substance entering my lungs is dangerous, but sugar, I am told, is worse than the rest. I tell her (truthfully) that another physician, a lung specialist, saw me the previous day and said he saw no problem with my sipping on water, since my mouth contains saliva that will travel through my system anyway. Dr. Bl- will have no part of this, however, and nixes the water too. She informs me that I will soon have a swallow test, and if I pass it, and receive the blessing from the speech therapist, I can slowly move from liquids to blended/soft solids to more serious food.

But I must pass the test first.

As a consolation prize, she prescribes two ice cubes every 30 minutes.

I am reduced to begging for ice cubes. That’s what I live for these days.

Part 129 Not indestructible but indistractable


I decide to make myself focus on anything other than my present predicament. I have been thinking about food for so long and how I would be soon able to taste again. Dreaming of the sensation of liquid pouring down my mouth. But now I am still unable to enjoy any of this.

I slide in a DVD into my portable player. It is a concert by Elvis Costello and Louisiana artist Allen Toussaint. Dr. Bl- observed it in my room one day and commented that she was a fan of Elvis Costello. She seems a bit edgy that way. His combination of sarcasm and wittiness would appeal to her.

I watch a few songs performed and listen to the music. After a while I hit the stop button. I am unable to continue. I am feeling miserable. It could be the dryness of the lyrics. Or it might just be my mood. Whatever it is, I eject the disc, wondering if one day I can listen to it and enjoy it without it triggering these dismal feelings again.




Part 130 Code blues


“Code blue…fourteenth floor…all available staff, please report to the fourteenth floor…code blue…fourteenth floor…all available staff, please report to the fourteenth floor…”

It feels like a nightly event. Sometimes more than once a night. The overhead speaker kicks on and a bell rings. I hear a voice calmly repeating the words “code blue”, reporting the floor on which the emergency is occurring, and a requesting for assistance from all available staff.

The call unsettles me each time. I am reminded of my fragile state, and, similarly, that of every other patient in this building. Some people find comforted when they are admitted into a hospital, assuming they will receive a comprehensive care program that is impossible to get at home. What I have discovered is that not every ailment can be successfully treated quickly, or even at all. Some rooms are filled with specialists who enter with credentials and good intentions but leave rubbing their chins and calling out for second opinions. I find myself more and more to be disturbed rather than comforted by the sheer number of persons who enter my room. It is beginning to feel like they don’t know how to fix me.

Also, in the process of treatment, accidents occur. The bells that ring and voices that speak may be a reaction to an untreatable stage of an illness. Or they may be the aftermath of a well-intentioned but failed effort at correcting a problem.

“Code blue…fourteenth floor…all available staff, please report to the fourteenth floor…code blue…fourteenth floor…all available staff, please report to the fourteenth floor…”

Part 128 My new best friends the “A” team


She just appears one Saturday morning. This is a lonely day (but as I have observed, all hospital weekends are). I hear footsteps outside of my room and a few muffled voices. But the traffic is minimal. An attractive young nurse knocks lightly, and enters my room. She has light, reddish-brown hair and smiles shyly. She is Sharon and will be working a double shift today. I have been told by my mother-in-law CC to expect her, and that since CC has recently supervised her in her nursing program, I should be pleased with her skill level. I am soon to find that it is high, possibly surpassed only by the superstar male nurse from earlier. She is attentive, and like him, anticipates rather than simply reacting to my requests. She assists with my tube feedings, repositions me, and just makes a gloomy day sunnier by being there. I selfishly ask her to extend her double shift, knowing that I may be at the mercy of who-knows-who when she goes home.

Later in the day I experiment with watching clips of movies I brought, or listening to snippets of songs from CDs. Nothing works very well. I flip through a few pages of magazines or positive thinking books, but they also are not cutting it. The day drags into the evening, broken by occasional ringings of the phone or the usual x-rays and scans. I have stumbled into the bathroom as infrequently as I have to, attempting to hold myself upright, but usually cannot do this unassisted. I first must call the nurse or aide to help me get up and walk me into the bathroom. She then leaves, I stand (tentatively), pee, then pull the wall switch that signals for her to help me back to bed. I lie back, as IV fluids course through my body.

Doctors that I vaguely remember from somewhere come in throughout the day to check on me and ask me the same questions. I almost appreciate their efforts, but not quite.

My routine is similar the next day. By late afternoon the sun streams through my windows, but I am filled with despair. A friendly Hispanic lady named Maria comes in to help me take a bath. I am incapable of doing this entirely by myself. Becah has washed my hair when she has been here. I find that even if I must skip a full bath I still feel worlds better when my scalp is massaged. I try to keep certain areas covered up while she positions me in a chair to bathe me seated. The experience would be very embarrassing if not for my sheer desperation in reclaiming some semblance of cleanliness and normality in my life. She manages to help me and keep my dignity intact. I find that I am as grateful for persons like her as I am for the surgeons that operate on me (in this case, maybe more so, because I harbor, maybe unreasonably, some blame on the experts that couldn’t prevent me from being here now in this condition).

Monday morning means the entrance of the “A” Team. As dawn breaks, Jacob wakes me. He is the quick-thinking resident who saved the day when I was in trouble during surgery. He is short, with dark, thinning hair and moustache, and a youthful smile. I have decided to make him the designated contact person who I will call whenever I am in hospital distress. He leaves quickly, but promises to return, and later arrives accompanied by Dr. Bl- and two more residents. Beth is a pretty blonde resident who is quiet and serious, but polite, and when I question her, is knowledgeable. At her side is Jim, another resident. He towers over me at about six feet six inches, is stocky in build, and looks more like a tight end on a football team than a physician. He smiles broadly and seems intelligent while also somewhat hesitant in his delivery. I am having difficulty taking him seriously as a doctor, and suppress the urge to tell him to go long for a pass.

This group, under the tutelage of Dr. Bl-, will be responsible for reshaping me back into the human being that I once was. They, along with a select group of nurses and aides, will be my new best friends for the remainder of my stay.

Part 127 Still more truth


I was originally informed that I would probably spend one night in ICU for monitoring during the surgery, about six more days resting in the hospital, and then return home for a few weeks of recovery. On this moment, a the very end of two weeks thus far in the hospital, my tube is successfully pulled out of my throat as I project phlegm wildly through the air.

I am asking for Puffs Kleenex with aloe, laughing and probably delirious. I am very weak and unable to stand without serious assistance. To others, I am dangerously thin and probably resemble a prisoner of war.

I didn’t sign up for this insanity. And speaking of insanity, I find that my thoughts are crazy as I come down off the heavy drugs they sedated me with. A stern nurse has become almost demonic in my eyes. Her sarcastic and eye rolling demeanor, interspersed among her smiles and attempts at genuine concern, are seriously disturbing to me. There is an Arabic patient that apparently has refused to sign consent for treatment, and it seems that much time is spent trying to coerce him to comply (authority figures, attractive nurses, and intimidating men have all been used and no one succeeds). He seems to have many friends visiting him, but in my mind they are co-conspirators in some deranged plot – from his veiled wife who arrives after visiting hours to the husky gentlemen in dark attire that look like bouncers or bodyguards. An IV bag of his has apparently some code on it that elicits suspicion.

I have even managed to drag Elvis into all this, because I somehow see paraphernalia of his image right in the room. And the hallucinations aren’t limited to just visual – I hear suspicious street talking outside even though our being three floors above street level would have made that impossible.

There was no Elvis paraphernalia. The nurse, the Arabic man and his visitors, though, as well as the IV bag, were real (and a large group of physicians really gathered to examine it for some irregularity). The sick and dying patients in the room were real. I did frantically write notes to communicate, sometimes having trouble spelling words and sometimes writing illegibly. I was frightened because I couldn’t talk and frustrated that my writing could often not be understood. I had extreme difficulty swallowing and breathing at times, and my panic from that was real. My mind was disoriented and I was afraid.

All of these things were real. My mind, fueled by strong drugs, concocted the crazy conspiracy story.

My need to escape all this was so real that it was palatable.

Part 126 More truth


Dr. Bl- approaches Becah again in the waiting room. She was able to get the smaller female tube in my mouth – the tracheotomy is dodged. “It’s a waiting game” for the next seven days, where I will remain sedated and in intensive care for my throat to heal. Dr. Bl- utters the sobering statement “either the swelling will go down or it won’t”, and offers the odds at being about 50:50 that the swelling will subside. The alternative will be a diagnosis adult respiratory distress syndrome, characterized by a dependence on oxygen assistance for an indefinite time.

The next two days my condition worsens, with added complications of staph infection, pneumonia, and fever. I remain sedated, in stable condition. Several bronchoscopies are conducted, my lungs are cleaned and samples analyzed. I have acquired some form of staph infection, and I am given a broad spectrum antibiotic to attack it.

As the sedated days go by, my white blood cell count gradually improves. After day twelve of my ordeal, I am weaned off oxygen dependence to see what my body will tolerate (the tube remains in my throat). The oxygen level is gradually reduced, and I respond appropriately. My infection begins to clear. A series of x-rays confirm the physical improvement in my lungs.

I must be a sight to see to those passing by. I am bearded now, and my hair is shaggy. Men’s Health magazine will never pick me for its cover, and for another year I will miss being on the front of People magazine’s sexiest man of the year issue.

Even as I make this great progress, though, Dr. Bl- fears that pulling the tube out at this time (extubation) could result in a surge of swelling again. Becah detects a pessimistic edge to her usually confident tone. Nonetheless a procedure is set up to remove the tube. If it fails, they will do the tracheotomy. A pulmonary specialist has deemed it acceptable to do this bedside in ICU. A physician from Spain is at his side, along with Dr. Bl- and one of her cohorts Dr. Ki-. Becah is not allowed in the room at this time. I am told that I am awake as they do this. My mind is groggy, but I am aware enough to know that this is quite unpleasant.

Part 125 The truth bared


The following is an account of the first days of my eventful hospital experience, pieced together from Becah’s observations, my jotted down notes, and my fragmented memories after the medications finally bled out of my system and my sanity returned…



On day one, Monday, June 27, 2011, I check into the hospital at six a.m. After some early anesthesia, I doze off, having no memory of entering the surgery room.

The surgery lasts for over seven hours, with Dr. Bl- stopping during the process to walk into the waiting room to inform Becah that plan A will be abandoned. The vogal nerve cannot be saved, an essential component of the plan to remove only the constricted portion of my esophagus and piece together a new one, saving the healthier section. Instead, the entire esophagus will be pulled out. Ironically, the only section that looks good to Dr. Bl- is the upper portion which had received the bulk of the radiation during treatment. It is her belief that I had an undetected reflux condition for years that was aggravated by my inability to eat during the radiation sessions.

After the long surgery is finally concluded, I apparently cannot talk, swallow, or do much of anything. My return to reality is horrifying. I panic. They threaten restraint and re-inserting the breathing tube that was placed in my throat during surgery. In the midst of all this, a young nurse named Jessica advocates for me.

I am admitted to the intensive care unit, and Jessica accompanies me, remaining there initially as my primary nurse. I ache everywhere, especially in my throat and esophagus, and on one side of my body. They pump in megadoses of drugs for pain. I have an oxygen tube under my nose to aid my breathing. My mouth is incredibly dry, and I am craving a Coke. I speak with much hoarseness in my voice.

I am told that my stomach is now positioned higher up, under my chest. I wonder if that means I will have to wear my belt ridiculously high. And what if I acquire a beer gut? How will that look? What if I’m ever in a boxing match? Will I pull my shorts up to my chest?

Day two. Jessica has left, replaced by the night nurse. I grumble at her by-the-book approach and her refusal to swab my mouth to give me some relief. She is a pain in the ass to me. After some time, though, I adapt to her style and appreciate her good qualities.
It is very warm in ICU. Eventually someone brings in a portable fan, turns it on, and lets it blow up my gown to cool me. Sort of like the famous Marilyn Monroe picture, only
I’m lying down. I’m less hoarse today, although I still sound bad.

A new nurse comes by. She too is a little too rigid for my taste, but she turns out to be alright. She cleans the area around my nose, and I breathe more easily.

At night, a tall, handsome young male nurse breezes in, looking like he is straight off a GQ cover photo shoot. He strikes me as a real hustler, with his energetic style and aiming-to-please “sure thing, man” banter (although that is better than the “no problem, dude” that I expected to come out of his mouth). He turns out to be amazing, better than any nurse I ever had. He is genuinely conscientious, remembering to show up on the dot at the time promised, with my meds or IV fluids, and even bringing items that he anticipated (correctly) that I might need.

I watch the movie “National Treasure” on my portable DVD player to help relax me, and I’m soon dozing. I sleep several hours and wake up refreshed. It is two a.m., and I mistakenly think it is the afternoon. Dr. Bl- had called the nurse while I was sleeping, having had a premonition that something was wrong. She has been worried about me and about the possible complications from the surgery.

Wednesday, day three. I am still in intensive care, but the plan is that I will leave soon. I try to play the DVD, but it malfunctions. About six o’clock in the evening I experience a severe shortness of breath and panic. The resident Jason and several doctors are summoned. In a flash my oxygen level has plummeted to a dangerously low 70. I freak out. A mask is placed over my face. Jason thinks quickly, adjusting my chest tube and stitching it with a pocket kit he whips out, just like a Boy Scout. And all the doctors are just standing there, watching.

My breathing improves, and the machine registers a much better 90. I am calm now, and experience no further crises today. I will need to stay an additional day in ICU, though, for monitoring. Dr. Bl- feels that due to my past radiation treatments I am at high risk for internal swelling, and wants me closely watched.

Becah arrives in the ICU room after 10:00 a.m. on my fourth day and immediately fixes the DVD. She tells me that a news crew is here to do a story about a 28 year old male patient who has been given an artificial heart. Dr. Bl- has been involved, monitoring his lung functioning.

Late in the morning I am transferred to a private room. My middle brother and my mother drop by in the early afternoon. I am given another steroid injection while they visit. Ten minutes after they leave I experience another breathing attack. After a quick panic sensation, I regain some composure. Jacob comes in to check on me, and informs me that the steroids I have been receiving cause some people to feel very anxious. My blood pressure and blood sugar levels have been elevated lately due to all the meds that have been pumped through me. A CAT scan is ordered to check my lungs, even though my chest x-rays have looked good.

I have learned by now that hospitals excel at running tests. Any test. The type is irrelevant. What matters is to order every part of the body to be repeatedly examined and analyzed, whether it is malfunctioning or working just fine.

A new resident from Bl’s team arrives and is an instant irritant. He demands a CAT scan with iodine, despite Becah’s and my arguments that I am allergic to that substance when flushed intravenously and that there are iodine alternatives that can be administered. They finally decide on an ultrasound, calling a technician at home to come and do the procedure. Despite the fact that I have had numerous x-rays where they bring the machines to me, this time they insist on packing up all my stuff and hauling everything downstairs for the procedure. I endure it fairly well, although I fear another bout of distressed breathing. After returning with no difficulty, they later change me from masked oxygen to tube (nasal canula) under my nose. During transition, the rapid breathing and panic erupt again. After returning me to the mask, I finally calm down. I begin watching the terrific movie “Immortal Beloved”, a fictionalized biography about Beethoven, and fall asleep about halfway through.

I am awakened early the next morning as Dr. Bl- and Jacob perform a mini-procedure by popping in a chest tube to expand my slightly shrunken left lung. The part where they probe a needle into my chest looking for a rib is not very entertaining for me. Jacob informs me that he is not bothered by a little blood as long as it isn’t his. He hits me with the last of the steroids and they leave me on an oxygen mask until my oxygen level peaks at 100%. They leave, and my new nurse Ella introduces herself. She is very good, and I feel better accordingly. I watch the remainder of “Immortal Beloved”. My oxygen mask is removed, replaced with the tube, in hopes that it will suffice. My level immediately drops to 92. I gasp that I need more air and that I can’t breathe well, and my anxiety is rising. So the mask is back on, and the level subsequently bounces back to about 98. Later on, Becah gives me my second bath in two days, and I feel much more human.

In the early afternoon someone enters and informs me they are ready to perform a barium swallow test which will take about five minutes. The downstairs bureaucrats have determined that I couldn’t be wheeled down in my bed, so I am transported by stretcher. Thirty aggravated minutes later I arrive in the room, where I am greeted by Jacob and other residents. The x-rays and swallow tests are positive, and the normally chalky-tasting liquid actually is a pleasant sensation to my parched throat.

By 3:00 I am back in my room. The five minute procedure has taken two hours of my time. Becah returns home to see how the kids are faring. I call home after she gets there to check in with her and talk to the children, who I am missing very much. I call my friend Mike, who has asked me in my spare time to compose lyrics for a song about gratitude. I watch a little of a concert video with Chicago and Earth, Wind, and Fire, then, sufficiently pumped, write Mike’s lyrics. I drift off to sleep that night as usual.

At midnight, Jacob startles Becah with a phone call. My breathing is labored, and he doesn’t think I sound good. He has called Bl-, who directs that I return to ICU. Becah hurriedly returns to the medical center, talking on the phone to Dr. Bl- on the way. Dr. Bl- observes that my breathing airway is compromised and my oxygen levels have dropped to the low 80s. My airway is constricting, and I will need to be re-intubated. “He is in distress”, she calmly states, as Becah steps on the pedal.

Becah rushes into the ICU at one a.m, greeted by Dr. Bl-’s team. Dr. Bl- has “front loaded” the operation with a pulmonary specialist and ENT physician. I could incur complications, and the July 4th holiday is approaching. If she includes these individuals to the team now, they will be obligated to return if needed. Otherwise, I would get the on-call staff.

If the tube procedure is unsuccessful, Dr. Bl- will perform a tracheotomy. Becah is falling apart at this time – total panic has set in. Her mother is at the Bolivar beach keeping the children, so she calls her stepmother Linda in Nederland, who immediately sets off for the hospital.

Part 123 New morning


The sun presses through the blinds as I open my eyes. I am still here. The hospital is here. I look to my left and see the machines that monitor my vitals. I listen to the whirring sounds they make, the rhythmic pattern.

I realize this was the “Arabian chanting” I heard last night.

I am greeted by a new nurse, Tia has gone home. I am in private room on the ninth floor. This would be far too high up in the building to have heard street music anyway. Anyone playing it loud enough to blast nine floors up outside a hospital would have been arrested on the spot.

I am told that I have been monitored for many days in the intensive care unit on the third floor, and that I have been very sick. I have suffered from complications from the surgery to fix my esophagus, and the extensive pain medicine that was pumped through my system to help me survive all this produced some vivid hallucinations. I will be alright, though. In time.



Part 124 Back in the world


The major drugs - the ones that caused my brilliant delusions - have left my body. I can think more clearly with each passing hour. I am very tired and weak. But I feel immediate relief and much gratitude that I am still in this world.

In the next several days I sit propped up in the hospital bed, scarcely able to move without assistance. My eyes constantly look toward the breathing monitor, praying to see a reading at least in the mid nineties. When I see numbers approaching 100, I literally breathe easy, knowing I am still around.

The doctors and nurses and technicians come by my bedside, usually only stopping briefly and asking how I am doing. I respond feebly, as if they have ignored the obvious and are just being polite. A technician introduces himself and tells me he only needs a few minutes for an x-ray. He slides a plate under my back and wheels a large machine over me. True to his word, it is briefly over, and he exits. Someone will repeat this process periodically for days, sometimes waking me in the middle of the night to do so.

Becah spends hours by my side, the constant in a stream of characters that come and go. She talks to me and gradually I begin to understand what has happened…

Part 122 Angel


The pain medicine is easing its grip, and all the crazy thoughts that it induces are slowly fading as well. But traces still linger, although I am getting blessed relief from being wheeled out of the miserable ICU. I have never had a worse experience in my life, and even now I feel a lingering horror from its memory. I am rolled into a room somewhere on another floor.

I am greeted in my private room by a youthful, pretty nurse named Tia, who hails from the Philippines. She has the most compassionate and sympathetic countenance I have seen. She helps lift me onto my bed, as I experience a weakness in my body that I never have felt before. There is a soft glow in the room from a lamp in the corner. I am totally helpless to even roll over. Tia props me up and fluffs pillows under me, softly reassuring me that I am alright. I need this reassurance, because I honestly am not sure that I will survive any of this.

After I rest for several minutes, Tia asks me if I need to use the bathroom. I am profoundly constipated, and when I tell her this, she brings in a portable commode. She helps get me out of the bed and on to this contraption, then leaves me in privacy. Somehow I manage to relieve myself in what seems to be the equivalent of at least four bathroom runs. When I am finished, I push the button to signal for her return. I am embarrassed but too relieved and still woozy to really care that much.

I beg for something to moisten this parched throat, but of course am told that is not possible. They will keep me sufficiently lubricated with IV fluids instead. Tia laughs about something, and sings a line from a TV theme song on a show her young daughter watches. She dances side to side as she sings, and I smile.

Tia leaves me to rest. My mind is troubled still, though. I hear faint music. At first it is interesting, this repetitive line going through my head. Middle Eastern melody. Maybe India? Or is it Arabic? Yes, that’s more it. The progression continues, and I am finding it less intriguing and pleasant, and more unsettling. I look across the room but see no source for it. I realize it must be coming from outside, in the streets. I lie back and shut my eyes, but the sounds continue. It is a chanting of some kind, but the words, if there are any, are foreign to me. I am suddenly struck by the fear that they are a battle cry, a call to arms.

Tia returns to check on me, with a male assistant. I ask if anyone hears the music. The male looks at me, grins briefly, and remarks, “there’s no music, man”. I ask Tia if she hears anything, but she shakes her head. They soon leave me alone again.

How can they not hear this? I strained my ears before, but now it seems to be coming with more intensity. I worry that this is the work of the Arabic man from the other room. He has arranged this and is planning to attack the hospital. Maybe set off a bomb.

The song continues. How do they get the radio station to keep playing it over and over? Maybe it’s from a CD. But the people will have synchronize all their machines to play it at exactly the same time. How are they doing this? They must be relentless and brilliant and highly organized. It is a powerful conspiracy.

I wonder if they have insiders in the hospital that are aiding them.

Why did Tia and her friend deny hearing this? Are they part of it too? Certainly not Tia. I can’t believe anyone that sweet could be part of this heartless plot.

I try to sleep. I am exhausted from my ordeal. I need to sleep. But I lie waiting, for some piercing sound, some explosion to rip through. I doze off. I wake up. I doze. Wake. My eyes close.

I sleep.