Part 93 Smooth streets and rocky roads


I am on an eating ride now. For lunch, at work I have yoghurt and vanilla pudding. At night it is shepherd’s pie and peas for dinner, followed by several pieces of chocolate. Then before bed peanut butter ice cream and a side of warm milk with cinnamon and whipped cream. This may not be gourmet to some, but I am truly loving it!

The esophageal biopsy report comes back positive – nothing but esophagitis, and that is manageable. In addition, my visit to ENT specialist Dr. Co- results in the clearest throat scan she has seen in me so far! Becah and I celebrate with dinner out. She has fish while I have the clam chowder followed by bread pudding with bourbon sauce.

The next morning I practice with the choir under the direction of guest composer Mark Hayes, who is demanding but polite (not always an easy accomplishment) in preparation for Sunday’s concert. Our family dines out that evening at Escalante’s Mexican restaurant, where to my amazement I finish all of my enchiladas, beans, rice, guacamole, chips, and queso without incident, enjoying every bite. The concert on Sunday goes well, and his arrangements of spirituals like “Ezekiel Saw the Wheel” are fun to perform. A dinner later of veggie burger with barbeque sauce, potatoes, and peas is also successful.

As the week progresses I stumble more on my eating efforts. I have difficulty one night swallowing pasta, usually a fairly easy food for me to digest and my favorite meal of all. Pizza (my second favorite) dipped in sauce does not work well either. Another night I choke on veggie stroganoff before having success later in the evening with soup. Even mashed potatoes one night are too thick to swallow. It saddens me enormously to see my condition improve so much only to regress.

February is here, wearing its overcoat to break the freeze, and snow is anticipated in a few days. Brooke is sick and I stay home from work a half day to be with her. By Friday school has been called off due to predictions of between two to five inches of snow (the icy powder hits north and west of us, though, so the kids get a free day off). On Saturday I attend a kids birthday party with Brooke, now well, and the girls are entertained by high school cheerleaders. That night we have dinner out, with me chewing tiny bites of food considerably more cautiously as my insides seem to be shrinking again. Our family watches “Despicable Me” again, and I realize I like this movie more each time I view it.

We dine with my parents on Super Bowl Sunday, watching Green Bay defeat Pittsburgh. I am unconcerned about the game outcome, but quite bothered by having to pass up most of the delicious food my mother has prepared. I flashback to past celebrations and family gatherings where I would load plate after plate of food that was superior to that which you would find in many good restaurants.

CHAPTER EIGHT
DILATIONS AND CONSTRICTIONS



Part 91 On the cusp of 2011


New Year’s Eve. If I celebrate anything, it will be making it out alive through the toughest year I ever had. Becah and the kids and our previous across-the-street neighbors the Vicks are hanging out all afternoon before everyone (except me) goes over to their new apartment for drinks, dinner, and fireworks. I opt to stay and slowly drink one beer and have little spoonfuls of cheddar soup while watching “King Arthur”. I top dinner off with ice cream and a few pieces of chocolate. With the exception of the beer, these are three of the four foods (the fourth being yoghurt) that I have the easiest time with. I pick Becah and the kids up later and we spend the last bit of the year together.

We spend New Year’s Day at CC’s house, with everyone eating and drinking mimosas and watching football games. I am trying to join the group, so I sip a mimosa too. I pause. Swallow. It almost goes down. I swallow again. There, I think that did it. I’ll even try a black-eyed pea or two, for much needed good luck. I should have left well enough alone. I spend twenty to thirty minutes running back and forth to the bathroom sink spitting out bits of food but mostly mucous that is viciously flowing from my mouth.
Finally it is over, and I lie on the bed watching a game while the others get plate after plate of fruits, nuts, chips, shrimp, salads, breads, and cookies, washing it down with glasses of wine.

So I’ve crossed the annual threshold only to arrive at this state: lying on my back and dreaming of what could be.



Part 92 Button


I return to Wednesday night choir practice for the first time in a while, only to have to return the following Saturday to sing in the funeral for a fellow tenor. He had been ill for some time off and on, but his passing was still unexpected. I was particularly sad, because I joined the choir on a whim, and on the first night it was he who took me in, sat me down, put sheet music in my hands and encouraged me to participate when I just wanted to sit in and watch.

I watch NFL wild card playoff games, disappointed at New Orleans’ loss to Seattle. The following day there is another upset, reminding me why I don’t bet on football games. Bree and I go to see “Tron Legacy” in 3D, and my streak of picking enjoyable movies for us continues.

The following week at work I present a talk before a fairly large group. My concerns about struggling due to excessive mucous are relieved when I unexpectedly have a very dry mouth instead. Not typically what speakers want, but I’ll take this any day.

I am reduced these days to ingesting most of my food by tube. The chocolate milk is even not working anymore. It is clearly time to return, however much I regret it, to the medical center for some more work. I am soon putting on the hospital gown and once again (I’ve now lost count of how many times) I am lying in bed and talking to nurses as they stick my arms with needles. This time in addition to a dilation they biopsy the esophageal tissue. The real plus, though, is the replacement of the clunky, leak-prone peg tube with a tiny “button” tube. It is a very small round piece of plastic with a cap that has been placed in my stomach. The brilliance of this is that you simply flip the cap, pour liquid in via a funnel, and pop the cap back. It is too little to snag on anything, so it won’t accidentally get ripped loose. Aesthetically it’s more pleasing too – from a distance you almost can’t even see it, a plus when swimsuit season comes.

At home, I chow down on two bowls of soup and Cokes, with the ever present soft chocolates for dessert. Limited to easier going digestible foods, but still…

At night the kids ask to sleep on the downstairs couches (Bree in the den, closer to the TV, and Brooke in the study, closer to mom and dad). I lay beside Brooke for a few minutes. She asks me where she was before she was born. I respond, “with God”. Brooke asks if she was in God’s baby tummy before her birth. This is followed, out of the blue, with wondering if “God has a hangy-down thing like you do” and then capped off with, “does He pee like you do?”

You would miss so much if you just sit in front of the TV at night.

Part 89 A merrier Christmas


On Christmas eve I awaken with a new spirit of positivism and desire to be wholly present in the day. My “friend” Thich Nhat Nanh would be very pleased. I sip hot chocolate for breakfast. On cool mornings it satisfies me, and nowadays I find coffee to be too bitter. Christmas music fills the house, performed by people such as Jethro Tull, Sarah Brightman, the Eagles, Phil Spector, Tony Bennett, Brian Setzer, and whoever is singing on the children’s “123 Christmas Songs” CD. After a few quick weights, I color pictures and assemble puzzles with Brooke. Next I read books to her. Brooke has become my new best friend. Her older sister is sometimes my buddy, but she generally is too attached to mom to have much left for me. Brooke seems very concerned about my health and is always asking questions. I think this is all weighing quite heavily on her in her fourth year of this life.

We attend the five o’clock church service featuring the children. Rain starts falling while we are there. After it is over, we pick up the customary Christmas Eve Italian dinner (this time from Hasta la Pasta) and take it home to enjoy with CC and GG, who went to church with us and will be staying overnight. I attempt to eat some of my meal, but give up, realizing that at the worse possible time my esophagus has shrunk too much for any of this to pass. I do manage out of sheer defiance and desperation to eat a tiny serving of cherry pie topped with vanilla ice cream, which I have been craving to top off dinner.

It is Christmas day, a chilly morning, and it somehow is a happy day. I refuse to add “with reservations”, even though the thought hovers. We have all slept to an unheard of (for this holiday) eight o’clock. I am asked to follow a series of clues (through many blind alleys) to find my special present. It is, indeed: an original Dr. Ra- painting, which Becah had attempted to buy, only to have her check returned with the note, “Merry Christmas”, attached.

I also have some new clothes and CDs ordered from Amazon. I usually find that others don’t know what music I like, or that I possibly may already have, so I order some CDs prior to Christmas and keep them boxed, pulling them on the holiday morning. Sometimes I order them far enough in advance that I forget which ones they are, and I really am surprised! We have mimosas with breakfast, listen to some more music, and watch “Scrooge” at noon. We top off a leisurely day watching the wonderful “Horton Hears a Who” before bedtime.




Part 90 Goodbye December


December draws to a chilly close. Over the next few days we drive about town, taking in several activities. We listen to “Beatles For Sale” and “Yellow Submarine” on the way to visit Parkway Place, an assisted care community where my mother has very reluctantly decided to temporarily house my ailing father, who has been falling down, bruising himself, and generally deteriorating. She has some health concerns too, and is increasingly unable to bear the burden of caring for my dad at home. He will be here a few weeks. I hate that it has come to this. I am upset that my father’s dementia results in his frequent asking why he is here, but most of all I worry that he just wants to sleep. I have been so concerned with my own health problems that I have refused to accept my father’s decline. Now it stares me in the face.

We escape these and other realities by going to the movies. I take the Bree and a friend to see “Narnia: Voyage of the Dawn Treader”. I anticipate that we will all enjoy it, and I’m not disappointed. Another day I take Brooke to watch “Tangled”, which I do only to please her, but I find it to be delightful.

I attempt to eat various foods, generally soups, chowders, and bisques, finding it increasingly more difficult to swallow as the days progress. Cokes are not even working well. My options are few and getting fewer.

At the end of the month we visit Dr. Ly-, who says (despite my poor luck with eating) that my physical status is good. He believes I could benefit from swallow therapy from a speech therapist (just what I need, more therapy from more therapists). He suggests a biopsy of the esophagus and to consider surgery for the stricture, which he feels that I could have at any time due to my “good health”. He reiterates that the stricture was not caused by radiation, but feels it could have exacerbated a pre-existing condition like asymptomatic acid reflux. Apparently he has concerns that the procedures I have been receiving may not be enough to resolve this problem (I am agreeing with him). But full blown surgery to correct this will involve a several hour session and dangers that could entail.

I am ending this year with more options and decisions to contemplate than I care for.

Part 87 Inpatient again (old dogs and criminal minds)


Suddenly I am sick again. Where are my pills? We phone Dr. Ra- who promptly suggests that we return to the hospital. I am admitted and weighed while lying in bed, checking in at a dismal 140 pounds. I haven’t weighed this little in decades. The physicians propose that I may have a virus, or that I am experiencing some complications related to the esophagus. All I know is that I am quite ill, enough to come willingly back to this depressing place.

After several hours of surprisingly continuous sleep and, I am certain, many drugs to comfort me, I awake Friday morning feeling much better. I am on a TV watching kick and view the films “Old Dogs”, “Star Trek 2009”, and two episodes of “Criminal Minds”. One of the “Criminal Minds” is a very unsettling tale about three trapped teenagers who are forced by their captor to decide which two get to live and be set free and which one must die. The plot, like the show actually is pretty sick and I am bothered that I am watching it at all.

That evening I am discharged after the usual long bedside wait. Becah and I stop at La Madeleine and I have coffee and eggs, which I eat tentatively. As soon as we arrive home, I am retching. Becah is at her proverbial wits’ end, and in panic calls her mother (CC) to come over and give her nursing assistance. I take anti-nausea and pain pills every chance I can throughout the evening and remain in bed all day Saturday, raising my head only to ask for more drugs. On Sunday morning I drag myself up, still shaky, and sit with CC in the den, watching a Hallmark Christmas movie about a child in a small town who disappeared. My bags are still packed and propped next to my bed in the event that I must be whisked back to the hospital.

The bags are not needed, though, as I continue to improve on Monday. I watch an Eric Clapton/Steve Winwood concert on DVD, followed by a 1976 Cat Stevens concert. The children are with their grandparents in Beaumont, so I am able to lounge around uninterrupted. I am better still the following day, actually getting out of the house and accompanying Becah to several shops (including Victoria’s Secret, always good for my mood) before having some gumbo at Rockfish. At night, Becah takes a break with her girlfriends while I watch Yes in concert and eat vegetable soup, followed by peaches and ice cream.

This is as close to heaven as I have been in a while. Nothing grand or magnificent really, but then again, maybe the smaller pleasures are the things in life that really are magnificent.



Part 88 Milestone


My health incline continues. I go shopping, listening to George Harrison’s “All Things Must Pass” CD. The kids return in the afternoon. At lunch, though, I am jolted when I choke on the vegetable lasagna I am eating. I take a prescribed Dexilant for this, feeling totally discouraged at this (yet another) setback. I walk to the park with the kids in the afternoon and meet a lady who remarks that my children look like twins. I am surprised by this observation, since I think that Bree looks just like me while Brooke favors my wife’s Lavender family. Later in the evening I try cheddar soup with a little more lasagna and have better luck, feeling better in response.

December 23, 2010. An important date for me. Exactly one year ago I received my dreadful diagnosis. I am now healed from that malady. I try to fix this in my mind as it wanders to ruminating about all that has gone wrong since my original treatment regimen. We have dinner at Luby’s, where I very cautiously attempt a dinner of fish, mashed potatoes, and broccoli, with limited success. Everyone else is zipping through their meal, and I find myself being a poor sport that I cannot. Afterward, we enjoy a chilly hayride looking at the multitude of Christmas lights in the Prestonwood subdivision. At home later that evening Becah and I start another fight, finally reconciling and expressing gratitude to God for all of our blessings instead of complaining about how we’ve been shorted. I awake at two in the morning to sleep with Brooke, honoring her earlier request.

Part 85 Lost pines getaway


When you can’t fight your troubles away at home, you can always leave on a trip, forget to pack them, and hope they stay behind! That’s what we try to do by driving a short way to Lost Pines recreational area in Bastrop, near Austin. Also, we feel that we were cheated out of a summer vacation and must make some amends for this for the children’s benefit (if not our own). The weather has warmed as we near the spot, listening to the band Traffic. For some reason I associate this group, and singer Steve Winwood with Austin, so one of their CDs is a travel requirement when we are in that area.. We check into the Hyatt, where we have been given a special rate. Becah and the kids are eager to explore the place, as I usually would also be. However, the Texans and Jets football game is on, and it is very close, and there are playoff aspirations going on here. I sit and watch the Texans come from behind in the final minutes and take the lead, only to have it slip away with 50 seconds left.

The facility offers many activities for kids, including hay mazes, face painting, campfires at night, and a chilly lazy river to float on. We manage to take advantage of most of these over the next two days.

My mood is inconsistent. At times I am able to enjoy our outing, but at others I feel strangely indifferent. The place itself is nice enough, but it is nowhere near the longer, more attractive vacation that we had planned for the summer. My intermittent physical discomfort clouds everything I do. We have buffet dinners two nights, and I find side dishes like sautéed mushrooms and peas to be delicious. Other menu items, though, are either hard for me to swallow or don’t taste as they should. I see all these foods on the table but can’t enjoy them fully.

That seems to describe my life lately. I make little bits of progress but regress at every turn.

We return shortly to Houston. Thanksgiving approaches. A time to appreciate your bounty. I sincerely am thankful for so much. For so long now I have to remind myself to be thankful because of all the stress in my life and all of the problems that have amassed.




Part 86 Exit the stent


The neurologist, Dr. Su-, has me complete a few perceptual exercises, observes me walking down the hall, and decides that I am in pretty good shape. He recommends that I continue occupational therapy to work on my hand flexibility. It has taken quite a while to get this appointment with him. He has been monitoring me, however, ever since my unfortunate experience with the anesthesia. Becah is impressed with his skills and demeanor, and I find that I am also.

December arrives. In my mind is the fact that almost a year has passed since all of this began, and it is not the “distant memory” that I was assured it would be. It is the ongoing reality.

On December 8, 2010 I check into the hospital again to have my body given proper fluid levels. The following day Mary the nurse, the female anesthesiologist, and Dr. Ra- assist me into another hospital procedure, this time to remove the stent. It has not been quite three months since a stent was first placed, but I have endured enough and the doctor feels that, if it is to be effective, enough time has probably elapsed that it can be taken out now. The procedure goes well, and I soon feel much relief, both physically and psychologically, that it is out of my body.

For about a week my good feeling lasts. I swallow some foods, I walk about, I live in more peace. My inside chest does not hurt. I can put the pills away.

Part 84 Return to misery street


Regardless of how one tries, it is impossible to relate personal experiences effectively so others can understand your unique life situation at any time. I can state that I am ill, or even use the words “miserable” or “terrible”, but that still does not allow others to really step in and experience my condition themselves. Of course, who would really want to do that?

From Monday through Friday of late October to early November my residence is the hospital room. Around the middle of that time my stent is replaced. The original stent had apparently migrated, causing me to ache with pain for all those days. The new stent, in a new position, should bring an improvement. Of course, there is no guarantee that this stent will not also move, with subsequent discomfort to be expected. I ask Dr. Ra- why he cannot simply put a softer piece of PVC pipe in my chest so I don’t have this metal stent grating against me. He replies, “oh, you mean a Mexican stent?” (his being Hispanic making this remark more humorous).

The usual array of nurses and staff check in on me, but I have spent enough time in hospitals now that I am becoming jaded to even their honest efforts at making all this a more pleasant experience for me. I really just want to sleep to escape and, when awake, just want to be pain free and left alone. Of course, even when I attempt to doze off, there is the usual waking me in the middle of the night for taking vital signs or drawing blood or wheeling me out during the day for chest x-rays and other tests. For distractions the TV is here, but rarely turned on. As usual, I also have a stack of books and magazines, but they go unread. I am existing (living would be to optimistic a word) until Friday, my proposed discharge date.

Friday is chilly, and it is evening before all the papers are ready and we can finally get away, but I am at last on my way home.

Early in the morning in bed I have a crazy dream about going to England and meeting Tony Blair and having to control feeling nauseated. I wake up actually feeling sick. After this abates, though, I realize my pain has dropped considerably. Soon a crystal, cool day has evolved, and although I am shaky I feel much better. I work out for the first time in many days, an activity which itself lightens my mood. Activated, I drive around, running errands while listening to “Buffalo Springfield Again” because its freshness just seems to go with this day.

I visit my oncologist Dr. Bu-, who has reviewed my latest PET scan. There is a tiny lighted area in my groin. I have told him about the periodically swollen and painful lymph gland. He feels that this might indicate a hernia, which in light of everything I’ve previously dealt with would be a minor problem. He recommends another scan in three months.

My good fortune is short lived, though. The tension is thick over the next days regarding my unresolved health status, and Becah and I find ourselves shouting again over which one of us is suffering the most. Becah is convinced that her caregiver duties are draining her, while I am adamant that my pain is greater and I would change places with her any day. It is, obviously, an unwinnable fight because, again, no matter how you try, you cannot really live inside another’s skin.

Last year on this day

6-24-12

Last year on this day, we were preparing for major surgery for John. We were finishing a swim season, preparing for a banquet with truly no regard for how our 6 year old had done in her swim meets. Our hearts were heavy and our minds were full. The only thing that was at the center of our minds was this surgery, this 10+ hour surgery. Was it the right thing? Would it work? Were we looking at another set back? Would they just find more cancer? These were the only questions on our minds and in our hearts.

What we know 1 year later was that the surgery did work. It was a long road (September 2011) before we reaped what was carefully sewn by Dr. Shanda Blackmon. But to this day, we continue to reap and reap in the form of John eating and eating and eating some more. This was our goal and it was met. Many others blessings have come in this year in the form of peace, relief and freedom from worry along with a sound faith in God that continues to grow daily.

We are also greatly humbled tonight because we realize that the battle, or rather the war, on cancer still rages on. So we are happy tonight for ourselves and the fact that we are able to celebrate our daughter's achievements in the pool. We will watch her this year in the invitational meet rather than hearing the results via text from our hospital room. Lord, we are ever so grateful for this blessing. But our hearts are not as light as we had hoped because for us the victory flag flies but for others, some nearest and dearest to us, the battle still rages. In our hearts, we prayed that we were fighting this battle so that others we loved did not have to fight. That has not proven to be so. We are bummed about that but we also know that this is just a season for them as it was for us. Their battles will also come to victory in the end because our heavenly father will make it so.

Tonight we ask you to pray for those still battling cancer particularly Charlie, James, Shirley and Enid. Thank you for all your prayers for us.

Love,

Becah, John, Bree, Brooke & Brett


Swim 2011 (Bree is the driver!)


Swim 2012

Part 82 Brett Westie


Friday October 22, 2010 marks a momentous event for some in our household. We drive to a co-worker’s house to bring home our newest family member, Brett West Lavender Butler. He is a West Highland white terrier. “Brett” was to be the name of our third daughter, if one were to be. Instead, we opted to use the name for the puppy. “Lavender” is my wife’s maiden name. “West” is from “West Highland”, and since he’s a boy, it sounds kind of cool and “western”. West Highland terriers are often called simply “westies”. It also is a great name, because if we call him “Brett Westie” and you switch the first letters of each name around, you get something real funny.

I try to inject levity into the situation because in all honesty the last thing I need in my life at this time is a pet. I cannot even take care of myself or my wife and children decently, and now there is a dog in the mix. But Bree is an animal lover who has been begging for a pet. We have skirted the issue for months. But suddenly a friend finds herself with a litter of registered puppies that generally can go for $800 apiece, and her friend who breeds them is ill, has other litters of puppies she must find homes for, and Brett it seems will be free. He is old enough to leave the litter right now. So how can I dodge this one? We had already gone over one evening to check the pups out. Bree sat down on a chair and one pup came right up to her and sat in her lap. He stayed there the entire time as Bree stroked him. The lady told us that he was one of the more affectionate and laid back of the litter. The attachment was made.

I am truly not ready for the gate we have now installed in our kitchen, or for this small dog leaping up at me. At least it’s not a Yorkshire terrier, a microscopic dog like our neighbor’s of which the kids are enamored and want one just like. Brett is small and only a few months old, but he has a little meat on him and doesn’t look like he would break if you step on him. To his credit, he sleeps through the first night and doesn’t cry!



Part 83 Rob


In the ensuing days my condition changes little. I try to stay active, working some and attending events like a high school football game where my oldest daughter gets to guest star with her little friends in the halftime marching show. I occasionally experience a lightness and calm sensation that the pain meds can produce, but generally am just content that they keep the bulk of the pain at bay. At mid week I carve pumpkins at the table with the family in anticipation of Halloween. In the evening I take a bite from a slice of toast, gag, and throw up. I notice an abundance of mucous, thinner and more foamy in consistency since the stent has been installed.

Friday one of my best friends comes into town from his home in Colorado. His wife has treated him to a trip to see me, for his birthday (on Halloween, the same day as my father’s). Rob goes back to junior high in Shreveport, farther back than any friend I have. We used to ride around together in his Chevy, coasting through barely amber lights on bald tires that we prayed had enough tread to stop us when needed. By high school Rob’s sister had gone to college, so we had the entire second floor of his house to hang out in. His parents fortunately left us alone to listen to rock and roll as we clandestinely sipped rum and cokes. We sometimes double dated but were more likely to be found cruising around town with buddies trying to find someone to buy us sloe gin to mix up “cherry cokes”. Occasionally Rob and I indulged in pranks, like the time we uprooted several stop and yield signs, wrote words on them, and left them in his ex-girlfriend’s front yard (less funny since we weren’t smart enough to leave well enough alone, and when we went back outside to walk around later that night, the police picked us up and drove us downtown). We got a rock group together, he on vocals and me on drums, that lasted long enough for a few practices until his parents moved prior to his senior year to Houston. My parents moved there too after my first year at Louisiana Tech, and on my second night in Houston, Rob arranged a date for me with a girl that I wound up dating steady all summer. When I transferred colleges to Stephen F. Austin and Rob attended Baylor, we got together periodically. For a short time after college we both lived in Houston. When Rob was bartending at a club called Jason’s I would drop by after working my three to eleven shift at Hermann Hospital and hang out, while he would slide me over his “mistake” drinks to sample. After he suffered a broken heart at the hands of his then wife, he packed his bags and moved to Colorado, where he lives today with his wife of many years in a “log cabin” home on acres of land east of Denver.

I have mixed feelings about his being here now, though. Due to my discomfort, I am ambivalent about being around anyone at this time. Rob, despite the fact that I haven’t seen him now in years, is quickly getting on my nerves along with anyone and anything else, and I long to simply lie in my bed and groan undisturbed.

On Saturday I manage to get enough energy to go with Rob and my family to my parents’ house for a party to celebrate dad’s birthday. My dad has been around many years now and I don’t know how many times we have left to celebrate his birthday, so I will pop a few pills, put a smile on my face, and just do it. Becah meanwhile is frantically emailing Dr.Ra-’s office to get a refill of pills, as my jar is quickly being depleted.

The next day I am so miserable that I agree to return to the hospital. Nothing is working, I am rolling over and over in bed, still unable to get comfortable, and after I apologize to Rob, who still has one more day before going back home, Becah drives me back downtown. Of course, there is the customary endless wait in the ER, with me begging for strong IV drugs, strange doctors asking me again to tell my story, and other people as sick as I am groaning in the hallway competing with me for a room. Becah sits at the end of the bed and tries to be tolerant. I am admitted several hours later, and find brief solace just in having my own room.

Part 81 Vocals


Dr. Co- has found a nodule on my vocal cord that was not there before. It could have been caused by the pipe placed in my esophagus during a dilation, or an irritation from the stent that currently resides there. It is probably nothing, but she refers me to a specialist to have it examined further.

We travel to Dr. Be-’s office, located on the edge of the medical center and in a complex that apparently caters primarily to pregnant women. I feel odd walking around here surrounded by all these women who look like they could give birth any instant, and wonder if I have come to the wrong place. Dr. Be- is a larynx specialist, and in her office I see many music posters and realize many singers must be seeking her services. She examines me and determines, to my great relief, that the nodule is probably just a minor irritation from my esophageal treatment. A few liquid meds taken for a short time should resolve the problem.

For the next few days I experiment with eating different foods. The spaghetti with spinach and cheese sauce tastes good, and along with a tomato/avocado salad goes down well. But fish sticks and fries on another night don’t work.

I am battling big time with queasiness and occasional retching. Going out anywhere is risky, and I am apprehensive leaving the house for any amount of time. I return on one occasion from taking the kids to gymnastics and begin throwing up.

In the early morning one Tuesday I suffer much pain. I have been alternating Hydrocodone with Percocet for the past few days to combat the discomfort, with little success. The following night is rough again, with little relief from the pain even when taking the pills. I get out of bed and immediately retch from pain. I struggle to get ready for work, and feel terrible when I get there. I have an evaluation of a student which is due very soon, though, so I pull the student in at about 9:30 to test. I manage to get through it before leaving for home around 11:00. I stay home the rest of the day, sleeping some, but often simply turning over in bed and ruminating on how miserable I feel. I’m up at 3:00 again, retching.

Becah suggests I remove the pain patch that I have been wearing for a week, fearing that it may be contributing to the nausea. I begin taking Phenergan, an anti-nausea med, in the afternoon hoping it will help. That evening, I begin my routine of setting my alarm every three and one-half hours to wake up and take a pain pill before my previous pill expires and the pain kicks back in. I am of course exhausted by this erratic sleep pattern, but being tired is better than hurting.

Part 79 Swallow


Starting off a new week I pop a pain pill then take two cans of Ensure via peg tube and promptly throw it all up. This leads me to a trip back to the hospital for a barium swallow study. Dr. Ra- has decided that he wants to make sure all my pipes are functioning correctly after all this excitement – it is possible that the stent has shifted, causing complications with swallowing. I have heard the barium is quite unpleasant to the taste, but I am prepared. (At least I think so). I take the tiniest sips possible of the chalky liquid, hold my breath, and swallow. After a few trials, it is finished. The results show no significant disturbance in my esophagus and no need to replace the stent.

The sun shines brightly as Becah and I stop into La Madeleine for lunch. I am still feeling queasy though and the pain continues. The sensation now is more of an aching in the upper center of my back.

I am feeling much like I did back in the radiation days (sore, weak, tired, borderline nauseous). I have not made much progress, it seems.

I return to work the next morning but leave early to take my youngest, Brooke, to the doctor to get meds for her strep throat. Back home I rest a try a little soup. I pop on the pain patch to see if it will be more effective than the pills, but later I take another pill anyway because of my lingering discomfort. After two Ensures and a little more rest, I return to work.

By the weekend I am experiencing one rough night after another. I try a few bites of scrambled eggs on Saturday morning. The mucous in my mouth and pain combine for a formidable opponent, and I resort to taking pain pills every four hours. I find myself watching the clock, anticipating when enough time has elapsed to take another pill. I exercise in the morning, using a 20 pound weight (up five pounds) in my left hand and 25 pounds for my right hand. I try soup again to eat later in the day but give up – the excessive mucous ruins the taste.

I make my reverse doctor rounds again. That is not doctors going from patient to patient, but rather this patient going from doctor to doctor. Dr. Mu-, my G.P. observes that my meager weight of 155 will not be changed overnight – despite what many think, it can be very difficult to gain weight. He prescribes multiple medications for me to take to fortify my body, but informs me that I am maxed out on the strength for pain pills and he cannot give me anything stronger. Becah has texted Dr. Ra- , keeping him in the loop about my progress with which he is still calling “radiation esophagitis”. Dr. Bu- prescribes me an anti-nausea med that I place under my tongue. He also prescribes me more pain pills. I have learned that if anyone offers, you take them up on it. I have been in a sufficient amount of pain these days that I don’t dare run out of pills.



Part 80 A few words about pills


I am still leery of pills. However, I am desperate now and will try anything. There might be a magic substance that shuts off this pain like a light switch, and if I search hard enough I may find it. I am bothered by taking these, though, because of all the time spent grinding them, mixing them. It is a constant reminder of how my health is not what I need it to be. I have also heard enough tales about people addicted to pills, particularly pain pills. A fascinating memoir about singer/songwriter John Phillips (of the Mamas and Papas) relates a harrowing tale of his fascination with and ultimate demise from drug addiction. A very creative musical influence, but I’d just as soon not emulate that part of his life. And will there be complications from all the drug interactions? My body is too fragile now to handle those.

Part 78 Enter the stent, or return to lights out


I contact Dr. Ra-’s office with many questions. He will place a stent in my esophagus to widen it sufficiently and long enough to allow food to pass through for longer than just a few weeks, which has been tops to this point. It will remain inside me for “an extended amount of time” (which he estimates to be about three months). The stent is hard with edges that can be expected to cause some discomfort. “Some people tolerate the stent better than others” is his response when I ask what the degree of my discomfort might be. This will be a one time procedure “unless another one is needed” (I’m supposed to be comforted by this?). My diet will not be restricted, although “lots of water” must be consumed with meals and carbonated beverages should be included frequently to clean the stent. I am to expect a rough first few days, although not extreme pain, and pills will be prescribed should I need them.

We have a trip planned for the Red River Revel in my hometown of Shreveport, Louisiana that must be cancelled. I am sad about this, as the event is fun, I always enjoy returning there anyway, and I was hoping to get together with some friends that I hadn’t seen in a while.

On the last day of September I arrive at the hospital at 9:00, but it will be noon before the actual procedure begins. A nurse with a British accent greets me and I recognize a blonde nurse, but the other faces are generally unfamiliar. The event is (fortunately) unremarkable. I am very sleepy afterward, which is common, but there is a soreness deep down my throat about the center of my chest that is new. There is much flushing in my face but no real fever, and vomiting. The pain keeps me awake, so I turn to pills to diminish it. I find some temporary relief, but I still struggle to sleep at night, and wake up often. I prepare for a few uncomfortable days, as I was warned. But I hope my body will adjust, or I must get stronger pills.

I sleep through most of the following day with some early afternoon queasiness. The following day I do little but lie on the couch and watch football. At the last day of the weekend I double my pill dosage. I make it through the morning, but the few spoonfuls of yoghurt I try at 10:30 return at 11:00. This is not going to be easy.

CHAPTER SEVEN
ADVENTURES IN LIVING



Part 77 Michael Douglas and I


On the first day of September, 2010 Dr. Gu-, rather than Dr. Ab-, performs a surgery on me to replace my feeding tube with a peg tube. While I am under, he expands my esophagus to 12 cm. I appreciate that he unexpectedly decides to do the latter, but what distresses me is that it has shrunk so much that he has to widen it to a mere 12 cm.

For several days I am able to eat nonetheless, but by the twelfth of the month I discover that I am having serious problems swallowing again. I am now turning more to soup and yoghurt. Today I cook up one of my favorites – cheese beer soup, tasty and fattening both.

A People magazine cover grabs me the following day. Actor Michael Douglas finds himself headlining an issue after a tumor was discovered in his throat similar to the one diagnosed in mine. He will require extensive radiation and chemotherapy as I did. To make matters more ironic, he like me is married to a beautiful woman years younger, who will be by his side and struggle too through all this. And has also two young children dependent on his ability to be healthy and guide them through this life. I fantasize about being able to get in touch with him and discuss our situations and those things we have in common. That is probably where the similarities end, however, since he is a rich movie star and I am not. He also has a house in Bermuda where he can get away from all the hoopla that will be at his heels, and I do not. Of course, fame and money cannot shelter you from this disease. (It can, though, pay for the best treatment that can be bought). The villainous intruder that entered our lives is a great leveler, and cares not whether you are rich or poor or how many houses you have or whether you have none at all.

Part 76 Stents and setbacks



In late August I make my first visit to choir practice in some time, and the following evening attend my first book club dinner in months. Driving over to Chris’ house I listen to Brian Wilson’s “Reimagining Gershwin” CD. When I arrive, everyone greets me warmly, glad that I have returned to the living.

I thought the idea of a guys’ book club was goofy at first. However, these folks, mostly professionals and nerdy types, are humorous, witty, and very supportive of me. Good combination. Every now and then we actually read and discuss the assigned book. Most of the time we simply ramble on about various topics, like trips and politics, or like tonight (compliments of my presence, health). The host has prepared shrimp and cheese raviolis, which look delicious, but all I am able to eat are a few slivers of fresh pear.

Saturday August 28 my parents and brothers and all our families meet at Babin’s seafood restaurant to celebrate my parents’ 64th wedding anniversary. I try the crab bisque, afraid to tackle anything else. Taking very small spoonfuls I still have trouble eating, and almost choke twice trying. Even the beer doesn’t go down easily. I am bothered greatly, particularly on this special event, that everyone can enjoy the evening but I must struggle just to get through it.

I get up early Sunday morning to sing in the choir at church, but quickly lie back down when I am struck with bad leaking of my tube and diarrhea. The tube has been generally good for the past week or so, so I am taken back by this malfunction. We visit Dr. Ab- , one of the gastroenterologists I have seen before, the next morning, who suggests replacing the tube. It seems there is a big difference between the feeding tube (that I was given when my other tube was torn out in the hospital) and an actual peg tube, which Dr. Ab- recommends. He suggests we come back in two days and replace the tube. We discuss my eating problems and he suggests that a stent may need to be inserted into my esophagus to widen it. He also warns me that the can sometimes migrate, requiring the procedure to be repeated.

I am getting extremely tired at this point of all my setbacks. I am aware that I may require a stent placement, and that the procedure is delicate. But one of these highly professional men (Dr. Ab- or Dr. Ra-) should be able to fix my problem. I call Dr. Ra-’s office, and his assistant confirms that I may need a stent and indeed the stent may shift, requiring another procedure. Dr. Ra- will be out of town and will not have an opening to do that, however, until September.

So the waiting and the setbacks will not end soon.

Part 75 “Captain, we have sprung a leak!”


I start the next morning with a breakfast of cereal and blueberries, with fair success. At lunch break from work I have more luck with cream of mushroom soup (always easy to eat and tasty) and to some degree with a half grilled cheese sandwich. The dinner of salmon and Caesar salad is a flop, the former being too dry and the lettuce simply too difficult to swallow (they taste good, though).

On Wednesday morning I drive to the gigantic Champions Baptist Church, the site of my school district’s annual convocation/glorified pep rally. I take my seat alongside other staff members from my primary campus to listen to a Canadian speaker discuss the positive influences of the internet on students. First we must endure the cheerleader portion of the show, where each school in the district is introduced and everyone in that section stands and screams. Then we have the “heart wrenching” vocal (with band) performed earnestly by students. Eventually the speaker begins, and he is fairly interesting. When it is over, I stand to leave and suddenly feel something warm at my side. I walk briskly to the nearest exit, look down, and see dark fluid leaking all over my shirt and down my pants leg. I immediately untuck my shirt from my pants and try to hold a folder over the area as I practically run to my car. The fluid is suddenly pouring out. I drive home, which is fortunately close, as fast as I can.

I lie down in the bathroom and take off my clothes. The fluid is darker than Ensure and looks suspiciously like blood, so I am worried. Becah is calling every doctor on her list, and, since it is lunch time, no one is answering. We consider dialing 911 before we finally get Dr. Ra-’s office. They inform us that it is simply a leak in my tube, which happens occasionally, and that we should drive over to let him look at it. Fortunately, we already have an appointment with Dr. Ly- anyway, so we wrap me up and Becah drives downtown.

Dr. Ra- observes the tube, makes some minor adjustments, and I’m on my way. We walk over to Dr. Ly-’s office, where we wait for an astounding two hours (even watching the front desk staff go home for the day) before we are called in to his office (“sorry, he’s been running a little behind today”). He spends 45 minutes inspecting me very carefully and deliberately, and I am so impressed that I forget about the interminable wait. Maybe I’m just happy because he likes my last PET scan and, after inspection has determined that I am in “excellent” condition. I beg to differ with that description, but it sounds good to me anyway. He will see me again in three months and wants another scan done in six. Fortunately just routine follow up stuff.

Becah and I stop for Italian food on the way home. I order what should be easy on my throat – fettuccini alfredo. But I have difficulty swallowing even with that, and take most of it home to try later. The leaking at least appears to have stopped, so I am still in a good mood.

Part 73 You must be kidding


“You must be kidding”. This I remark to my wife when she informs me that my esophagus was expanded from 12 to 15 cm. and another procedure will be done in two weeks for the final pull to 18 or, if possible 20 cm. Of course I initially was just grateful to wake up with no complications. Being alive and healthy is always the best place to be. I also respect the fact that Dr. Ra- is being cautious and does not want to rip the organ by pulling too much in efforts at minimizing the number of operations.

A few evenings later I am back at home expecting great things from my newly expanded esophagus. I attempt pizza, one of my favorite foods of all, but find that it is so dry to my mouth that I must dip it in spaghetti sauce to have any chance at all of finishing even one slice. Eating continues to be slow and laborious. The next day is a mixed blessing. I can now feed myself completely, untwisting the cap on the Ensure bottle and pouring it into my tube, unassisted. I am sobered, though, by the fact that I must continue to rely on the tube at all for nourishment and cannot simply eat my food, any food, like anyone else.

July, my favorite month, ends. I have time to reflect, but unfortunately use this time to think of what has gone wrong in my life. I was not supposed to get ill. My treatment was to have lasted for a limited time, after which I would resume my life. Instead I inherit an entirely new problem. When I have it treated, I suffer complications that must be surmounted. Neither my swallowing nor my fine motor problems have been resolved. My birthday, anniversary, and fourth of July celebrations in Florida never happened. Here I am now.

You must be kidding.




Part 74 Fields of gold


We take Bree out to celebrate her sixth birthday on August 6. She wants to eat again at Red Robin, and I order the chowder with some confidence. However, I have difficulty getting it down. This upsets me, since I had a recent dilation and should not have this much trouble swallowing chunks of food in a cream sauce. But I am cautiously optimistic, knowing that I will soon receive another procedure that should help me. The following day Bree enjoys her birthday party, painting ceramic works with a dozen friends at Art for Kids. The next day, I continue my exercise regimen by working the machines at the gym, and am pleased with my physical progress. After one day back at work presenting a program to a group of teachers, I am ready to return yet again to the medical center, where Dr. Ra- and his now generally familiar staff manage to enlarge my esophagus from 15 to 18 cm. Dr. Ra- deems this a success, noting that the two centimeter difference between this and his ideal of 20 is not significant, and that I should be able to eat most anything. I am back presenting at work again the next day.

On August 12 I go for a PET scan while Becah meets her stepmother Linda at San Jacinto mall. She trades our kids for a Chevy Traverse to test drive for a few days. In fairness to her, it isn’t a literal trade. Linda takes the kids back to stay a few days with her in Nederland, driving Becah’s car so Becah can check out a possible new car. Becah’s dad Billy runs a used car lot and has many connections in the Beaumont area for obtaining cars, and he has found this SUV for her to try. That night Becah and I watch a Columbo together while I am actually able to successfully eat a cheese enchilada!

Becah drives to Nederland to pick up the kids, I spend some time by myself. I am getting stronger - the yoga, jogging, and pushups are working. Becah returns Sunday in the Chevy which we will be buying.

We meet with Dr. Bu-, my original oncologist, who reviews the PET scan results on Monday. The scan is good, but the radiologist noted a swelling in the right lobe in the brain. Initially distressed, we ask if that could be related to the stroke/TIA/whatever that I experienced. Dr. Bu- says he forgot (!!) about that, then calls the radiologist who will write an addendum to his report. The great news is that the radiologist had at first recommended my having an MRI again to check out this activity, but with this new information will not suggest further testing. The otolaryngologist sees me next, scans my throat, and deems it fine. We stop at the store on the way home to buy dinner and champagne to celebrate our good fortune, listening to Sting’s “Fields of Gold”. Before enjoying veggie tacos, Bree says a touching prayer about my treatments being gone.

Part 72 Let’s get to 20 and wrap this up


I arrive at the medical center at 10:30 Tuesday morning, fasting as usual. I dislike these later procedures for that reason and am always glad when they inform me I need to be there at daybreak. We wait for hours, though, and it is 2:30 before we begin, so my hunger is wide and my patience is thin. The doctor has seen me, as has a new (to me) female anesthesiologist, Dr. Gr-, who I am told is extremely good. One of the nurses informs me that this lady administered sedation to her child when she required surgery. This is good enough for me. I still remind her several times to keep the Demerol away. She will use my preferred combo of Propofol and Versed as usual, so I am pleased. I find myself less anxious this time since the last procedure was uneventful. I have been here a few times now, so even with new staff passing by, some of the people are familiar.

A room is finally ready. I have looked around, trying to decide which of the three room numbers is the lucky one. I am surprised that they have not already sedated me, as I am usually asleep before I cross the operating room threshold. But I am cognizant of all this.

Inside, the procedure room fills quickly with doctors, aides, nurses, and so many people that I am looking around for the “maximum occupancy “sign. I appreciate the familiar faces of staff who were with me in the prep room. One tall, muscular African American male is new, but I am comforted by his presence because he looks confidant and tough enough to just reach in and yank this esophagus wide open if all else fails. Wires and monitors and flashing lights are everywhere. I expected to be asleep already and I am a little unsettled (although at the same time fascinated) that I am awake seeing all this. People pull masks over faces and extend their hands through gloves. I quip something to Dr. Ra- like “who’s in charge here?”, to which he replies, pointing to a nurse, “she is”.

The anesthesiologist stands beside me and discreetly injects something into my IV. She has told me already that I might experience a stinging sensation, but I don’t. I just have the odd metallic taste in my mouth like always when the anesthesia enters. A few people assist me in turning over on my left side. Someone slips a rubber piece into my mouth to keep my tongue in place and prevent me from choking. I experience a brief wave of dark particles falling all over and a heaviness in my head. I sleep.

Part 70 Euphoria


In what seems like a flash it is over and I am slowly waking. Becah and Jeanette come by and greet me. I am happy beyond belief that it all went as planned. I joke with them and the staff, almost giddy. Dr. Ra- has told Becah that my esophagus is now at 12 centimeters dilated, with much less ulceration apparent. I should be able to swallow larger amounts of fluids more easily. I laugh and say I am ready for some enchiladas. I cannot ingest any solids yet, though, and another surgery will be necessary to reach the desired esophageal width of 20 cm. I also will need to remain overnight in the hospital for monitoring. An older Indian nurse named Ruth attends to me that evening. Her mannerisms and abrupt dialect irritate me initially, but after a while I discover that she is very professional and caring and I really like her by the time her shift is over in the morning. By afternoon I am prescribed oral antibiotics for the road and discharged. To celebrate at home, I take a sip of beer – it tastes terrible!




Part 71 Down face dog


July 21. My first day back at home, and I feel great. The water goes down easily in the morning, as does a little root beer on ice. For lunch I mix a shake, using milk and ice cream to enhance the Ensure (or is it to boost the Boost?). I must get on with exercising, so I try some yoga in the game room. Despite my malfunctioning left arm, I find some strength is returning - I am able to do yoga positions like the plank and down face dog. Some fine motor skills are also returning; I am able to grip a roll of paper towels with my left hand and tear with the right.

The following day I exercise more, adding jogging and some light weight lifting. I feel much better being able to do the physical activity, which would normally be a daily component of my life. I am keeping the kids at home while Becah works. I spend more time than I would like on the phone hassling people about medical billings for treatments and their payment responsibilities versus mine. No matter how much better you feel, another surprise bill in the mailbox will bring you down quickly. I also make some calls to set up the procedure for next week.

Taking a break, I read a book about British prime minister Tony Blair while listening to Poco, a fairly strange combination. We go across the street later to lounge at the pool for Fun Friday, and Brooke wants to swim with me, which makes me happy. I am swallowing better today and try Tawny Port, a sweet wine that actually tastes very good to me.

Saturday we go for dinner at Red Robin, where I enjoy my beer, one half cup of clam chowder, and one and one half French fries. I would love to eat more, but this is all I can do without spending most of the night at the restaurant. It is tough chewing so cautiously and sparingly while everyone else is rapidly downing their meals. Later at home Becah and I find ourselves in another raging argument and I am aware that as I inch along toward healing, she is struggling with her increasingly demanding caregiver duties.

Closing out the week, we attend the contemporary service at church and drop by Barnes and Noble for the kids to check out books and play with the train set. While there, the pain in my groin kicks in rapidly, so I suggest we head home so I can ice it down. Later in the day we watch together the delightful animated film “Despicable Me”.

I return for a half day of work Monday to find the building in disarray and the air conditioner off. Later in the morning it kicks on and by noon I am comfortable. Despite the heat outside, I am not too bothered, as I am filled with anticipation today that I will be back at the medical center tomorrow to wrap up the process of widening my esophagus so that in a matter of days I will be eating pizza, pancakes and pasta again, just like in the old days. Maybe soon even a big sandwich on whole grain bread, which I find I crave more than anything.

Part 68 Esophageal procedure: take 4 (but wait…)


Dr. Bu- tells me there is no need for any more chemotherapy! He also reiterates that my esophageal problems are not related to radiation. I continue to differ with the experts. I was there and saw the results of the diffusion of the rays. I also did not have previous swallowing problems or reflux that would indicate esophageal distress; the prospect that I coincidentally inherited this problem right when radiation was administered seems too much for me to believe. We agree, though, that I suffered a probable TIA because of the Demerol.

I wake up early Friday morning in mid July with a fever of 101.3. My neck is red and swollen. I have my fourth procedure set for this morning downtown, this time monitored in the hospital directly across from Dr. Ra-’s office. I am already anxious about this operation, now I am physically ill to boot. We call Dr. Bu-, who suggests we head downtown anyway. At 9:30 we arrive and spend some time in the endoscopy room. The nurses’ faces are different. A tall, stocky, wavy-haired nurse named Marie is very kind and, with the help of the others, including some who quickly stride by but still make time to waive to me, I soon feel more at ease. Dr. Ra- finally arrives, giving me bad news; I have cellulitis – nothing to worry about – but I will have to wait a few days for the procedure. I feel lousy, as I had almost psyched myself for all of this. I will have to stay in the hospital for IV antibiotics and monitoring. Becah stays at my side until 8:00 that night – it takes that long to get a room!

Saturday morning I am visited by the infectious disease specialist. The origin of my disease is unknown, but the antibiotics should knock it out soon. Of course, this is Saturday, Dr. Ra- will not be back until Monday, so I am here for the weekend. I am in a surprisingly good mood under the circumstances. At night I watch The Godfather 2 until 9:00, then realize I have not received any food in a while and call the nurse. At 11:30, despite repeated requests prior to that time, a quirky, absentminded, but still very friendly nurse finally arrives with my Ensure. I am starving and all too aware of my dwindling weight and how much I need the nourishment now. I require feeding assistance now that my left hand is still on the blink, or I would of course be doing this myself, but I must instead lie here while she carefully fills the plastic syringe again and again, slowly injecting the contents into the tube following, until I get a sufficient amount of liquid. Occasionally the liquid spills on me, but I have taken the precaution of placing a towel to catch the spill. I have also learned to always ask for vanilla, because chocolate stains worse and, since it is going through a tube, the taste is irrelevant. Fortunately I entertain myself by watching the original King Kong. It takes most of the movie for her to feed me. No wonder she was so late, probably envisioning having to drag through all this. I imagine other patients are grumbling right now that she has been so long in my room.

My good mood slips a little on Sunday, but I am still okay. I often have songs running through my head (some good, some bad, some positive, some sad). Today the beautiful classic “Clair de Lune” by Debussy creeps in, and I try to hold it. Becah and the kids come by in the early afternoon, and I am overjoyed to see them.



Part 69 Now, take 4


Monday finally arrives. I am to fast all day, very disheartening since the operation is scheduled for 3:30 in the afternoon (note to everyone having surgery: do it at 6:00 a.m., when you are still drowsy and not starving). Becah’s friend Jeanette returns to be her shoulder to lean on. I am scared in the waiting room, but trying to be brave. I am actually more nervous when the two of them come in to talk to me, remembering what happened last time. Although I see myself as having no choice but to do this, I am unsure that I am physically and psychologically ready. The lack of food only makes matters worse, and it is all I can do to try to temporarily distract myself from being hungry.

The new anesthesiologist introduces himself and after repeated reminders he assures me for the final time that he will not expose me to Demerol. Dr. Ra- finally strolls in, smiling confidently, grasping a hand and saying to me that everything will be fine. Marie and the other nurses have offered me their support, making small talk and joking all the while. “Clair de Lune” plays on in my head. I think about family and life and other big subjects as they wheel me into the procedure room. It is now 4:45. I am famished, my head is full, and I am ready.

Part 67 Answers, more questions


On the following days I visit the experts to try to get answers to my questions. I check in with my general practitioner Dr. Mu- to keep him in the loop with my adventures and ask him if he thinks my proposed procedure next week is safe in light of the adverse reaction before. His statement that there are always risks with anesthesia does not comfort me. He is most concerned with my maintaining proper nutrition in light of my significant weight loss. I value his opinion and have established a trust of him over the years, and he is the most stable medical reference point for me considering all that has happened and in light of all the different medical personnel that have crossed my path this year.

I return to Dr. Ni-’s office, where I already have a follow up meeting scheduled to review my status. She is highly qualified, having been educated at a trio of Ivy League schools, so I should be able to get some answers here. The leisurely click click click of her heels approaching on the tile floor is less of a sexy sound to me now; it has become more foreboding. Will she surprise me with news that I need more radiation? Fortunately, she does not prescribe this. It is her opinion that radiation did not cause the stricture, since treatment was very precisely directed at my neck only – the stricture is in my mid chest area. However, I noticed during treatment that not only my neck but much of my face was sunburned following the sessions, so apparently the rays diffused despite efforts to localize them to my neck. It is no surprise to me that she would remove blame from radiation, though, since it is her treatment specialty. In Dr. Ni-’s mind the Demerol was clearly the villain in this piece, since I had already received a different anesthesia on a previous procedure with no adverse effects (and it was closer in time to when I received my radiation, when my body could have been weaker).

Among doctor visits I go for another OT/PT combo. The physical therapy session is abbreviated since my blood pressure has crashed to a low 96 over 51 level (a second reading later is no better, at 94 over 51). I have been seriously run down lately, and this confirms why. Nana, the occupational therapist, remarks that fatigue is a common response to a stroke/TIA. She makes my fingers curl again when she stimulates my wrist with the machine. I am soon able to touch my thumb and forefinger together, which elates me.

Next it is another conference with my rehab Dr. Ki-, whose sincerely kind manner is of itself therapeutic. He is very pleased with my rapid physical improvement. He does caution me about driving, though, until both my hand dexterity and peripheral vision improve. He also agrees that my malfunctioning peg tube is an obstacle that requires replacing.

I have some answers and feel somewhat comforted. However, I still have a pending procedure which fills me with apprehension. I talk to an assistant at Dr. Ra-’s office, who tells me that my next procedure will take place in the hospital, monitored in its entirety by an anesthesiologist. The sedative of choice under those procedures is usually Propofol. I explain to her, as I will to anyone hereafter who will listen, that under no circumstances are they to allow Demerol to get within a five mile radius of me. I call an anesthesiologist who had previously given me a sedative and had her confirm that in her opinion the Propofol administered during my next monitored procedure will be safe.

I feel a little better now about having another procedure. Dr. Mu-’s cautionary remarks, though, linger in my mind. And I still feel that my weight is too low and I have not yet regained much of my former strength.

In the past I always blindly trusted the medical profession to hold me in good hands. I did not question treatment recommendations, medications, anything. I was a cooperative patient who followed orders. All it takes is one bad experience, though, and you will question everything. If someone brings me a bottle of water now I will probably want to know what spring it was drawn from.

Part 65 Turbulence


I return to work the next morning to work a half day. I come home for lunch, and notice that today as in the past days I am becoming more forgetful. I open refrigerator doors and cabinets to my left and move to the right, forgetting to close them. I turn on a sink faucet, do something else, and realize I have not turned the faucet off. I am not attending to objects in my left peripheral field of vision. These are becoming frequent events, and are marginally disturbing to me. What is less than marginally disturbing is walking into the bathroom and suddenly feeling my head spinning, the lights dimming, and finding myself on the floor.

I have never fainted before, so this feeling is new to me. I could feel myself slipping out of consciousness, and caught myself as soon as I hit the floor. I even tried to quickly jump up to pretend it didn’t happen. But Becah heard me and I think even caught me out of the corner of her eye. She runs to me, breathlessly exclaiming, “what happened! What happened!” I can’t explain, but simply shake my head, mumbling “I don’t know”.

Later in the afternoon I go for my OT and PT sessions. My blood pressure is taken and is an acceptable 107 over 65. I have no more strange events the rest of the day. However, the next day, after the kids head to Nederland with grandparents, I begin experiencing some chills and sweating after my meals. I am also having pain in the area of my feeding tube. These new developments are unsettling. I draw up a list of concerns and questions to discuss with the three physicians I am scheduled to meet with in the next week.



Part 66 The list

1. Radiation ended in late March. Are these lingering side effects that I am experiencing, that will eventually dissipate?
2. Is it safe to use anesthesia to dilate my esophagus now? Would it be safer to wait?
3. Are my physical afflictions the result of anesthesia only, or a combined effect of anesthesia and radiation?
4. Will my esophagus widen eventually on its own without these multiple (and potentially dangerous) surgical procedures?
5. Why do I feel more sick (nausea, chills, sweating) following tube feedings now when I didn’t before?
6. Why am I always so tired?
7. Do I weigh enough (at 150 pounds) for my body to withstand any more treatments or procedures? Or will I be crushed and blow away?

Part 64 Outpatient valleys and peaks


I start outpatient physical and occupational therapies today at a nearby hospital. The physical therapist is Jean, a short, somewhat stern looking young lady who asks me to walk up and down steps and balance while walking along a low pole. She has me step side to side and checks my balance and peripheral vision, which are still somewhat shaky. I am convinced that I don’t really need PT that badly, and will work quickly to end this part of therapy. My occupational therapist most days will be a rather stocky, soft spoken lady from South Africa named Nana. She has a rich chuckle that flows often following my sarcastic remarks about my abilities to do the outrageous things she requires. Like grasping little pegs and placing them in holes (using, of course only my left hand), or trying to grab a sheet of paper and crumple it using only my left hand. She also has me use the seated weights, pushing out repeatedly to develop my arm strength. Unlike my confident attitude regarding my mobility and gross physical skills, I am painfully aware of my fine motor limitations, and quickly come to feel great apprehension at the OT sessions. I am frustrated that my hand dexterity has not returned as rapidly as my leg strength and general mobility have improved. Nana manages to excite me one day, however, by attaching an electric device to my left arm which jolts me and causes my fingers to curl. I am amazed! I can’t voluntarily move my fingers but they now move nonetheless.

Saturday is a particularly distressing day. I must join the choir to sing for the funeral of fellow singer Rich, who has been so supportive to Becah and me over the past months. He finally lost his long fight with this relentless disease. He was an older man, and I guess he just ran out of strength.

Becah and the kids ride bikes in the street for a parade on a sunny July 4th. Later we join the across the street neighbors lounging in their pool, with Becah joining in a rummy card game foursome.

The following day is our wedding anniversary. Becah talks me into getting a pedicure with her at a nearby spa. I feel that I could be doing something more manly than this, but it is special to Becah that I participate. (And I actually enjoy it!) After that, we go to an African restaurant, where I sip on wine while watching Becah dine.

I love early July. What’s not to love? The birth of our nation, my wedding anniversary, followed by my birthday the very next day. That’s a triple package! This birthday, however, starts off with a visit to Dr. Ra-’s office at 7:15, downtown. His office is covered with fascinating surrealist artworks, all painted by the physician himself. He discusses another surgical procedure for me, to be conducted on the 16th of the same month. I am apprehensive about this, with good reason. My last trip under the lights was terrifying, and I would do anything to avoid that happening again. However, I am forced to go through this or face the reality of the choice between choking on food that travels through my ever shrinking esophagus, or feeding myself through a leaky tube forever. Not very good options, these. As I leave, I hear someone wishing a happy birthday. I turn, and realize it is not directed to me. Dr. Ra- smiles and thanks the person. We share the same date of birth.

Part 62 The problem with hospitals


I’m sure they mean well. Hospitals are filled with generally well qualified personnel, who have all been to college, have been trained, and have taken oaths to do no harm. Hospitals have different names, but they are basically all alike. Some are named after subdivisions and some after saints. Each has its lofty mission statement framed and hanging on a wall.

There is a problem with hospitals, though. They are not filled with superheroes, but rather just people like you and me who make mistakes (and trust me, when you are here you don’t need mistakes). You better not get attached to your nurse – at shift change she is leaving and will be replaced by someone with totally different mannerisms and work style. Like any beaurocracy, there are forms to fill out and procedures to follow. Hospitals are businesses, requiring profits to stay solvent, so don’t expect a good staff to patient ratio. This means you will take a number and wait in line, whether it is for meals or medications or emergencies. There are limited cable channels on TV. They don’t have the refrigerator or pantry I have at my house, through which I could rummage and find much better food.

But most of all hospitals are filled with sick disgruntled folks like me, not uplifting to be around in this condition, ranting and raving, who cannot ultimately be trusted for these words to be believed any way.



Part 63 Departure, I’d like to say it’s been fun, but I’ve been KO’d and I don’t want a rematch


After the pros have reassembled, I have been given the blessing to depart this place. With current medical plans, it is not necessarily that you are fine and healed, but rather just not in such a sad shape as you were when you entered. The criteria for discharge have dropped somewhat in the past years. But since I am not picking up the bulk of this exorbitant tab, I can’t complain (although I am still getting stung for a good portion of it even with decent benefits). Most importantly, I miss my home and family so much that I would sneak out and crawl home if they tried to keep me one more week. I probably wouldn’t even leave a goodbye note. I wave as I leave, though, and thank everyone for all they’ve done. I sincerely mean that.

I discover that July has arrived, and I greet it at home. We have a rainy morning, but not the deluge that was expected from hurricane Alex that hovers near Padre Island. Despite the fact that I am out of the hospital, all is not bliss. I am having problems with the feeding tube functioning right, and my swallowing difficulties mean that I must rely on the tube more than I would like. The depression is creeping back in.

There is a bit of a parenting debate going on tonight at the Butler Casa. It is summer as you all know. We love summer at our house and the last 2 summers have, well, to put it mildly...sucked. John was in the hospital the majority of summers 2010 and 2011. He is healthy for summer 2012 and we could not be happier. We are going to the beach, ALOT. We are going on vacation in July. It will be fun, fun, fun...except!

The kids are home all day and they are very messy, little creatures. Mess is good though and I want them to be creative and have fun all day long. However, when they are finished being creative and fun. I want them to clean up their mess and so does John. We agree on this one.

There are some aspects of how this cleaning will be completed that we do not agree on. So tonight when asked to clean up the play room and the living room, much whining ensued and some tear and a few "it's not fairs". This happens pretty much every time the kids are asked to clean up anything beyond their dinner plate. So I had an idea, I told them that they would be home all day, most days in the summer and whatever they got out to play with, they had to clean up...everyday. I told them they had to do this without whining and crying or I would clean up whatever they chose not to and give it to charity.

I thought this was brilliant (Heck, I still do). Bree thought it was a total injustice and ran to her dad crying about how mean I am. Brooke took is pretty well. She had a few questions like, "what if I stub my toe at the same time you ask me to clean up, therefore, I am crying when you ask me to clean up but it is not about cleaning up? then do I have to donate my toy?"

So in comes dad, his opinion is on side with Bree that this is much too harsh. He agrees that they must clean up and as a consequence for not doing so then they would only be allowed to play with toys in their rooms. I don't see that happening but he is the psychologist.

So now we pose the question to the Curve ball audience, what is the best way to get your children to clean up their mess day after day. Beach's way, John's way or other?

Thanks for your support.

Becah

Part 61 Let me just bitch and feel lousy for a while


The next morning begins another weekend in this place. Weekends in hospitals are worse than any other time. I actually have come to miss the hustle of the weekdays around here. There is little activity on Saturdays and Sundays, and when a staff member enters the room it is the weekend, on-call physicians, and that means more strangers asking the same questions. Why are you here? Do you have any allergies? What is your level of pain today on a scale of one to ten?...I mumble something like “it’s all in the folder”, or, when I’m feeling less polite, “don’t you guys ever read my chart?”. When Becah is here, she more pleasantly responds to their questions and actually engages in some reciprocal interaction with the staff. She wants the specifics of my condition, or maybe she is just hoping someone wise enough will have palatable answers to our questions. I am growing more pessimistic in my view of doctors and “experts” and hospitals in general. I am angry that I responded to one life crisis only to be met with both limb paralysis and swallowing difficulties in its aftermath. Becah will arrive later today, but for now I am on my own with this.

I am also bothered by the fact that regardless of progress I will not be discharged over the weekend. It will be during the weekdays, when the primary care providers will all be here to consult about my condition and readiness for discharge.

Late in the morning Linda, one of the physical therapists, takes me outside of the hospital to observe my gait, perceptual orientation, physical strength and endurance. I try my best, since this will be the final obstacle to my discharge. Fortunately I don’t stumble or pass out, and she thinks I have made real progress. Becah and the children come by in the early afternoon. The kids talk a few minutes, then ask to visit the snack bar or cafeteria before taking a ride on the train that runs through downtown. To them the hospital is a fun place, brimming with attractive choices. In the afternoon I have physical therapy again, and the therapists are pleased. Occupational therapy with Kathy follows, and with it continued improvement in my left arm. I feel much better making such strides in both of these areas.

The sun shines upon the next morning. Becah and the children will not be coming today. Although I long to see them and miss their company, I feel that Becah needs a break from all this. The drive from our house is an hour, and then there is the parking. When she is here, she is either just sitting or, if I am, sleeping, or is wrestling over some medical uncertainty with the staff. At lunch I chew cautiously on the meal, then choke unexpectedly and vomit. The remainder of the day is taken up by visits, first from my parents and later by Mike. I look forward to Monday, one step closer to discharge.

Part 60 Sick branches on the family tree


Dr. Ly-, my new oncologist comes by one afternoon, when my parents are visiting. He is getting more background information on my condition. I am so impressed by his determination and thoroughness that I almost forget that he is but one more of the growing list of strangers who are just passing by, intruding in my life. He asks my mother for a brief family history of persons who suffered from the disease that I was initially treated for before all these successive problems began. My mother starts with her description of her double mastectomy which she experienced years ago. I of course am familiar with this. But next she rattles of a list of Aunt Mabel’s and Uncle Lew’s that goes on and on and on. My eyes widen. I have no idea that so many people on my supposedly generally healthy family tree were so afflicted! Her side of the family is a raging medical basket case. I’ve usually been told I favor my father, but some have remarked that I have traits of my mother. I am now suddenly terrified that my medical condition could be in any way influenced by her family genealogy.

It is finally the end of the week, a Friday, and I have been in this hospital nine days. Becah and the kids come to visit me during therapy. It is wonderful to see them, but I am ashamed that they have to see me this way. The kids are great – encouraging my feeble, concerted attempts at doing what I did effortlessly in the past. But still I want them to return to my hospital room so I can do this without having their eyes on me. Bree has brought me the DVD of “Alice in Wonderland”, reminding me of when we saw it together in the theater. They stay a short while longer. I continue to experience profound ambivalence when they come. I am desperately overjoyed to see them, but minutes after they arrive I am bothered when they start squabbling. It is not the behavior itself. It is the fact that they focus on trivial things to argue about. I am too weak or preoccupied with myself to intervene. But mostly it is the reality that I am not allowed the privilege of getting upset over small things anymore. It is all about the big things. My children remind me of that. And I am saddened by that knowledge.

Late at night I have a scare when I choke attempting to swallow my food. Becah has already gone and I am alone. I have discovered that the hospital staff actually have other patients besides me and must tend to their needs occasionally. What that means though, is that just because I press the button for help doesn’t mean it will instantly arrive. I feel a brief surge of panic before I am able to swallow and breathe. When assistance arrives, I request a Vicodin to get some sleep. Being awake in this place is my idea of a bad time.

Part 59 The 17th floor (not in Florida)


They have managed to ruin even the iced tea. I don’t know how, but they did. If I were obese coming into this place, maybe a case could be made for the bad food as a prescription for weight loss. But I am down to P.O.W. weight here. I am trying to regain my ability to swallow. I need something to work with. The soup isn’t really too bad, some kind of corn chowder, but even Campbell’s canned stuff has no real competition here. There is some semi-frozen iced fruit something for dessert that I attempt; at least it feels good on my throat.

But then again, let’s be fair. I have had my neck irradiated for 39 grueling sessions. My taste buds have been slapped silly worse than a captive by his interrogator. I went months unable to eat at all. I’m not sure at this point a three course dinner around the corner at Charley’s 517 would cut it.

The physical therapists are the main show for awhile here. A curly haired, no-nonsense G.I. type named Audrey comes by my room every once in a while, and I make up excuses for not exercising. She will assist me getting out of bed and trying to hobble around down the hall outside my room. Maybe later today…how about some other time…I was just about to take a bath…She eventually ties some exercise bands to the head of the bed, so I can at least lie there and workout my right arm, which I actually am interested in doing. She is trying hard to tough love me into coming back, and I respect her and eventually enjoy her demeanor.

I am able to walk around, usually holding my limp left arm up with my right. An occupational therapist named Louisa evokes some lateral movement in my left arm. She stimulates my hand with a vibrator, and my middle finger moves. I am thrilled at some visible progress, since for days I have not had any movement in that limb. My left leg has bounced right back – I can walk now almost normally. The physical therapists have had me walking around the floor, stepping side to side or up and down on a stair stepper. One therapist works slowly, deliberately, with me. She sits me on a seat, asks me to put my right arm behind my back, and throws a balloon to me. The idea is that my brain will override my arm’s insistence that it can’t move, and it will reach out to grab the balloon. Great idea. It doesn’t work. She tries again, and again. The arm just lies there.

I realize the importance of the therapies, but I am wrestling with my moods now. The staff and I both know the more effort I expend, the faster I will recover. But I am reluctant to do the exercises because I must face my limitations. Every failure, every setback reminds me that in my present condition I really need to be here. That doesn’t put me in Florida. Let’s face it though, Florida is just a memory now. I would find just going home to be a vacation at this moment.

Part 58 Showering with another woman


The following morning I erupt into a coughing fit in my second unsuccessful attempt to eat pancakes. I keep trying to consume the solid foods they bring me, because despite the effects of the surgery I am told the doctor actually managed to successfully widen my esophagus. I am visited by an attractive young occupational therapist named Kathy, who appears to be just briefly out of college. She is to assist me in achieving some semblance of independent living. The first obstacle is getting me bathed. I undress in the bathroom, then step inside the shower, and get positioned on a seat inside the shower. I modestly cover myself and turn on the water. She enters the room. It is a scene right out of an adult movie that in any other situation I might be aroused by, but today I am simply embarrassed to be here in this way. I’m sure there are places she would rather be too. She gives me tips like pouring the shampoo on the ledge, then putting the bottle down, scooping the gel into my right hand, and washing. Fortunately for both of us, I am able to finish my bath with little other assistance needed. After I get out of the bathroom, she helps me get a shirt on (guide your left arm through first using your right to assist, then pull your right arm back through the right sleeve). Little things, but I’m sure if left to my own devices I would be wrapped like a pretzel and talking like a sailor.

A physician friend Ken drops by in the afternoon. He is an optometrist, with no expertise in my area of pathology, but just the fact that he is a medical doctor and a familiar face gives me some sense of comfort. Becah arrives later, and even though I am saddened by my situation I am always better when she is near. Loved ones heal just by showing up. She watches me eat a potato, and after we go outside to spend a little time in the sun.

Later in the day Dr. Ki- , an older, brown haired physician with moustache and glasses comes in my room and informs me that he will oversee my rehabilitation treatment, which will last until he deems me ready to leave. I will be moving tomorrow to begin this next phase of my hospital regimen. Despite his pleasant demeanor and reassurances that I will recover, my mind is flooded by thoughts of how none of this is supposed to be happening. I came to the medical center for a routine procedure, not for an extended hospital stay to fix my broken body. Besides, we have planned a Florida vacation that is to begin soon. I want to be lying in the sun and listening to the breaking waves, somewhere far, far away from this dreadful place.

Part 57 Back in the corner with glazed eyes


Two days after my accident I am recovering very slowly in my hospital room on the twenty second floor, with a great view of downtown, just across the street from where my procedure took place. My brother Craig comes to visit very early. I’m not really sure when he enters the room. I am still dazed and not tracking well, but I hear his voice and recognize him. Others come by too. Steve and Melynda are here at some point, and I even attempt some communication. My friend Mike comes by later that day (ironically, he celebrated his birthday two days ago), with gifts, a portable DVD player and some movies. He doesn’t stay long; I am dragging and probably lousy company.

I am soon introduced to the hospital staff that will be caring for me. I am immediately upset that I will have to answer a myriad of questions from all these strangers who parade into my room. Dr. Ly- is the oncologist, a tall stocky man with a slow, folksy delivery compliments of his southern upbringing that is in direct contrast to the manner of my original oncologist. To his credit, Dr. Ly- is very thorough and seems knowledgeable in his area. He is accompanied by Dr. Wa-, an female Oriental resident physician. Things brighten considerably when a gorgeous brunette enters and introduces herself as Christine, my speech therapist. After I adjust to her appearance, I realize that she is also intelligent and offers techniques and a program for me to follow to help me swallow my food better. Becah chats with her and is suitably impressed. I try the pizza for dinner that Becah brings, without much luck. After that, Becah pushes me out in my wheelchair onto the floor and everyone comments about my flashy yellow hospital socks, trying to bring a smile to my somber face. At night, when everyone is gone, I watch “Woodstock” on my DVD. I am lonely and depressed.

The next few days I try to acclimate myself to this place. I meet a flurry of new people – technicians running tests on me, nurses at shift change, physicians - but I am still in shock and in utter disbelief that I cannot even raise my left hand. Christine drops by and accompanies me for a swallow study to determine what foods I can ingest. She waves later when she sees me in the hall, and quips “here comes the miracle boy!”, encouraging my meager efforts at showing some progress. Becah is even trying to smile despite being miffed when Christine showers me with compliments while grinning all the time. “Stop flirting with my husband”, Becah says good-naturedly, but with a firm edge to her voice. Look at me, all beaten up, and two women are still fussing over me.

It is the first official day of summer. Surf’s up. Somewhere, but not here. I manage to eat the grits and yogurt for breakfast but the eggs and pancakes are beyond me. The day is most memorable when I reach to untangle a wire on the side of the bed and accidentally tear out my feeding tube. Without too much of a problem it is replaced. During the day I am weighed – an amazingly poor 143 pounds! I am wasting away! Quick, get me out of here fast!... At night I watch a Brian Ferry in concert DVD on my new portable player while an Astros game plays on the hospital set. I am not sure that either one diverts my attention from my situation.

What I cannot get over is the fact that I am here indefinitely now. I expected to have a routine procedure, not to be hospitalized, partially immobile, and falling apart. Nothing I can do gets me out of this realization.

Part 56 Re-entry/I return to the living


The first day after this crisis I am still dazed, although I am able to speak. I spend most of my time, however, lying in bed, still in a state of shock over the events that have transpired. Becah assists the nurses and assistants as they reposition me, rolling me over on my side to prevent bed sores. I am helpless to doing anything.

Becah talks to me about what has happened to me. I realize the clanging that upset me so much came from the machine sounds from the MRI. Doctors come by and offer their theories of explanation. One physician surmises that I suffered a stroke. Another doctor reports that it should be more accurately called a TIA (or transient ischemic attack). This is described as being a “mini stroke” caused by disruption in cerebral flood flow with contralateral body paralysis (in my case, the event taking place in my right brain affecting the left side of my body). Typical symptoms include dimming of vision, slurred speech and mental confusion. These effects are typically resolved within 24 hours.

Another chilling possibility is that I suffered an allergic reaction to Demerol. For some reason, the anesthesiologist opted to not give me propofol or ¬¬¬¬¬¬¬¬¬¬¬versed, commonly administered sedatives, which they had used before on me, and instead tried a drug which, while commonly used on patients in previous generations, is now given infrequently (Dr. Bu- will later tell me he was taught in school to never administer this anesthetic because of the potential for severe adverse effects).

I listen to explanations, but little is really sinking in at this time, except that I am lucky to be alive.

Part 55 Becah’s tale


We went to Baylor outpatient clinic for a second attempt to stretch John’s esophagus in order for him to eat. We got there early and he was taken back to pre-op. The procedure started on time. It took much longer than I imagined though and when I realized I was half way through a novel I had started that morning I got worried. About ten minutes after I inquired about when I would see John, a nurse came to get me and took me back to the recovery area. When I walked in, everyone was panicking. John looked like we was having a grand mal seizure to me and kept repeating over and over, “Please help me God, please help me God…” I asked Dr. Ra- what happened. He said, “he got too sleepy during the procedure and we had to give him Narcan to wake him up quickly. We think he is having a reaction to the Narcan. We have called 911. He will be transported to St. Luke’s ER across the street. You can follow in your car.” I said, “it looks like he is having a seizure to me.” I was told it was not a seizure, but either a reaction to medicine, a stroke, or a brain metastasis. These are all bad, but I was praying for a med reaction at best. We quickly left for St. Luke’s where the stroke team was waiting for us at the entrance.

There were four neurologists working on John. He was numb from the neck down, he could not see anything, and he continued to jerk rapidly and plead for God to help him. Doctors and nurses came in and out of the room rapidly. I begged for answers. There were none. He was making jerking movements too much and had begun to vomit, so an MRI was unable to be performed. Stroke protocol was not initiated because the brain metastasis could not be ruled out without first assessing the problem using the MRI. I looked at Dr. S, who would later become our neurologist of choice, and said, “what can we do”? He said, “Nothing, right now.” I said through tears, “so we are kind of screwed then, one way or the other.” He said, “yes”.

So we waited. My mom was in the room, then my best friends Jeannette and Frances joined us. We all just waited. John continued to jerk for hours. Finally the movements ceased. My mom left to go relieve GG, who was at our house with our children. Frances left too. Jeannette and I stayed in that tiny ER room, waiting and waiting. John finally slept. We had no answers. He was paralyzed and blind but he had stopped jerking. I was grateful for that small miracle. At about 10 p.m. we were told he was stable and being moved to a room on the “neuro” floor. I asked about an MRI, now that he was still. They said they would try again later that night. So we moved, waiting for the answer.

Finally, when the time was deemed right, the MRI was initiated. We would eventually have some answers.