CHAPTER 6
LIGHTS OUT


Part 54 Something has gone terribly wrong…


It is dark. What disturbs me most is the banging. This clamoring in my ears. It is incessant. Why don’t they turn it off… What is going on? I’m trying to get back to sleep…Am I dreaming? This doesn’t feel like home. I sense that I am somewhere else. Where? Am I alone?

There is much confusion in my mind. It continues for some time. I may be crying out, but maybe that is all in my head, as often happens in dreams.

It should be over by now. I don’t know how much time has elapsed. Maybe quite a while. I am awakening, very, very, slowly. I hear voices. My vision clears gradually, and the shroud of darkness lifts. The sun is diffused through the blinds in the window next to my bed. I have guests in my room, but I am uncertain who they are. I hear people talking about me (to me?). Becah must be one of them. Someone speaks to my left. I turn my head to see. It feels like everything is in slow motion. I try to raise myself up on my elbows, but something is wrong. Something is terribly wrong.

I have no sensation on the entire left side of my body. I cannot lift my left arm.
I try to move my legs. The right one moves. The left does not. I am frightened. This is no dream. This is real.

Part 53 Abbreviated summer, or prelude to lights out


GG has come over to watch the kids for a few days of the upcoming week. I must drive to complete some errands and business during the two days before my next procedure on the 16th. The day arrives, and I have the support of my wife and her mother, with me at the hospital. I am prepped by some new nurse faces this time, but they seem professional and have a sense of humor. One starts my IV without multiple jabs to find a good vein (always a plus in my book). I look for some consistency, since this facility is still new to me. The nursing staff is so important, because these are the first people who interact with you in the operating area and make an indelible impression. It will be a while before the anesthesiologist comes by. And it will certainly be a while before the pro doctor Ra- makes his grand entrance, striding swiftly in, accompanied by his residents and flashing an amiable smile with a confidence that instantly puts me at ease. But the first procedure was uneventful, so I really have no need to worry about this one. And this time all this will be taking place not in the hospital itself but in an adjacent outpatient area. Confidence is in the air.

The anesthesia slides into my tube. Before they wheel me into the procedure room, I am unconscious.

Boxers in the ring, after the fight is over, have claimed that they never saw the punch coming that knocked them out. I too was sparring with the unknown, gaining a little confidence now and then while having what I considered a healthy respect for my opponent. I try to cloak myself in optimism in general, in part because I genuinely feel that way and was raised to believe that way, but also because it is a practical strategy to function optimally in this world.

Regardless of your orientation and determination, though, life unravels in its own way, with its own bag of surprises.

Birds crapping

Last night when I went to check on Bree, the budding songwriter, she showed me her latest song, "Birds chirping". She lovingly showed it to me, very proud of all she had written. As you can imagine, I was aghast at her spelling of chirp. I quickly showed her the correct spelling "churp". I am such a good mother and teacher. :)

At least I thought I was until her daddy saw the lyrics. He quickly asked me what happened here. I said, "Oh Bree misspelled churp but I showed her the right way. Wasn't that cute?" To which he replied,"Becah, look at this! Does that look right to you?." "Uh no, oops" was my reply. John shook his head and laughed.

I want you to know it was really all just a set up to make him feel smart. Parents please do not be alarmed if someday I am assigned to be your child's teacher. I am very good at braiding hair so even it your child can't spell, I will always make sure their hair looks good.

Part 52 Summer on my doorstep


Summer is not officially here, but the first days of my summer break have arrived, and I celebrate by driving downtown with Becah to the medical center for a highly anticipated surgical procedure. It will be conducted by Dr. Ra-, whose practice is in a well known and respected hospital. The nurses have been tipped off by Becah’s nurse friend Nina, and are smiling and attentive, and together they offset any apprehensiveness I have about a procedure done in an unfamiliar setting. After the usual IV first, I joke around a little about how I expect to be treated like royalty, and yes, any meds that will relax me and ease me into unconsciousness will be appreciated. They comply, and shortly after I awake to find that Dr. Ra- has successfully widened my esophagus and has seen no signs of pathology. The catch, though, is that he too was impeded by the stricture and will need to do another procedure next week.

I have this to ponder as my family heads to Austin to visit my brother David, dodging motorcycles as they streak around us, heading for a big convention in Austin. We check into a pleasant hotel located beside a wooded area near my brother’s home on the north central part of town. A few of the bikers have also chosen this spot. We must immediately go swimming, of course, before we head off to a new shopping complex called the Domain Complex (sounds like the name of a spy thriller). I watch everyone eat what looks like a delicious pizza for dinner (no solid food yet) and we find ourselves in bed at an amazingly early (for a trip) 9:45.

After waking up the next morning at 7:45 (10 excellent hours of sleep) we drive to Round Rock to see my nephew and his family, then return to the hotel for a swim. We drive to Mt. Bonnell and take a short hike up the hill to catch a nice view of town. We head to the capital and over to Barton Springs to give the kids a quick look at Austin, only to find they have fallen asleep. We decide it’s time for my brother’s place, but first we must get past Toby the dog (not very imposing, but the girls have decided they are afraid of him). Eventually they warm up to him, and Bree throws a ball for him to fetch. My brother’s Mr. T. toy doll has everyone cracking up. It’s enchiladas all around (with one exception) and we are back at the hotel for another night.

I love hotels. I usually sleep well the first night, but I always sleep well the second. My streak continues. After drinking coffee while the kids enjoy a breakfast of scrambled eggs, biscuits and mango juice, we swim briefly again before stopping back by David’s place. Beside his 20 feet high bay leaf tree, David discusses with me his apprehensiveness about his prostate condition and his many treatment options. On the way home we grab to-go sandwiches while Brooke naps, accompanied our friends by the bikers. Outside of Houston we stop at an outlet mall and bring home lots of clothes for the kids and me (surprisingly, though, none for my wife). At home we reflect on the beautiful, sunny weekend, and although I am still plagued with a malfunctioning esophagus which certainly restricts my eating options, there are plenty of bright spots.

Part 51 Welcome to the big leagues


Buffalo Springfield Again. Another one of my favorite albums of all. It refreshes me as I listen to it during my day. After work, I jump into the present by listening to an Austin group, the Krayolas, anticipating a trip we will soon make there to see my brother. At night I sit on the couch with Brooke, who is sick, and we watch High School Musical 3, which makes her feel a little better (me too).

I have been referred to a new otolaryngologist, Dr. C- for an updated scope of my throat. Other than the part where they stick a tube up my nose to anesthetize my throat, the procedure is simple, conducted as I sit in the seat and monitor the image of my throat projected on a screen. The doctor is delighted; she sees a clear throat with only some small white particles residual to radiation. Dr. A.- calls me later with a referral for a esophageal specialist at the medical center downtown, Dr. Ra-, who apparently has the skills and courage to perform the delicate procedure next week to widen my throat without tearing it in the process. My good fortune continues. Becah is friends with a nurse who works with Dr. Ra-, who raves over his skills. He is apparently the pro that everyone goes to when all others have been exhausted. I pull up his resume online. Impressive. Although it is convenient to see physicians and be treated within a 20 minute radius of your home (the 20s again), sometimes it is necessary to expand your boundaries of comfort. If the best are downtown, you drive downtown.

Breanna has regained her confidence! She swims in the meet on Saturday morning, and does well. I am there after having slept four straight hours the night before, a feat which makes me happy. When I accomplish this a second night straight, I know I am rolling. I listen to a Cancare speaker at church and watch the choir perform their end of year informal concert after that. A choir member, Rich, who has been undergoing a medical struggle for some time (including chemo and radiation treatments), is in attendance. He has been regularly emailing my wife with suggestions that may benefit me. Sometimes these are just little things, like what kind of lemon drops are most soothing. His wife says his previous week was “not too good” for him. He is up there singing, though. I attend a contemplative service in the evening. Rich, seated near me, reaches across and shakes hands. No words need to be spoken.

Part 48 Popsicle


Starting the weekend off, Becah drives her grandmother home and drops the kids off with her mother. Later we relax and watch an episode of a favorite show, “Friday Night Lights”, then finish another “Columbo”. I lick a raspberry popsicle –the first food I’ve been able to eat in over three months – and sadly I consider this to be an important event. They said I must get accustomed to baby steps. I sleep restlessly at night, and spend some of the time on the couch. The following morning we visit the Honda dealership to test drive the CRV and Pilot (when all else fails, go shopping for a new car!), but we slip out soon after waiting excessively for a salesman to run figures on costs. Becah has lunch at the Panda Express and afterwards I have my lunch using the feeding tube, sitting in the car while she runs into a store. The kids return that evening. I manage to eat a frozen apple juice popsicle and some vanilla ice cream, before experiencing another restless night’s sleep. The next morning at church I am accosted by many people who are excited about my popsicle eating; it seems that someone posted the “events” on Facebook and now I am big news.

Becah drives the kids to a friend’s house to play with their children. I exercise at home, doing yoga, while listening to one of the greatest pop albums of all time, “Pet Sounds” by the Beach Boys. I feel stronger. Music can do more than doctors can sometimes.


Part 49 Memorial


Memorial Day is here on the last day of May 2010, and my parents come to visit. My dad continues to cognitively slip away from the world. He lives truly in the present, unable to remember what he said or heard just minutes before. I must practice being patient with him as he asks me the same questions repeatedly (what kind of work I do, when I am retiring, can he have some more coke). He has always been a leader in my life, but I cannot follow him now because he is lost. He is a veteran, so Memorial Day would normally be a poignant time for him, but I’m not sure he remembers now that this is a special day at all. I have forgotten its meaning too, because I am too immersed in myself. My day is lifted up just because I am able to enjoy a mango all natural popsicle.

After the parents leave, our family goes for a late lunch of Mexican food. I sip on Becah’s beer – my first taste of alcohol in months. It stings a little, although it is not altogether unpleasant.



Part 50 Twenties


June is normally a joyful month for me, the gateway to summer, signifying sunshine, more vacation time, and a casualness of attitude that summer allows. But I anticipated wrapping all the problems up by now and throwing them out. This was to be over by summer, at least in accordance with my timeline. I work a little today, then try to meet my “20s” obligations. That would be 20 minutes of jogging for endurance, 20 of weights for strength, 20 of yoga for flexibility, 20 of sunshine for body nutrition, and 20 minutes sitting at the dinner table for nutrition and family cohesion. There are probably other 20s to consider, but if I complete this group I feel that I am accomplishing something positive. Accomplishing the 20s has been hard these days, with my varying levels of endurance. At dinner tonight I find it difficult to sit, not just because everyone is enjoying a tasty meal of Mexican food and peaches, but also because my mucous has intensified after several days of improvement. I eventually leave the table to sit on the couch and watch baseball; I snooze off until awaking to an exciting finish when Lance Berkman singles in two runs in the last inning for a come-from-behind Astros victory.

Part 46 Swimming


I regroup, and take steps to move on. I drive Brooke to the pool to see Breanna’s first swim meet (she and her mother are already there). Bree is frightened. At last week’s practice meet, she had a false start during a freestyle race, setting off a flurry of whistle blowing that had her sobbing from humiliation. She was then asked to compete in a backstroke race, cried over this, and wound up swimming freestyle instead. The only motivation to continue in the event was to get a prized ribbon. After the meet, I take the girls to a friend’s skating party, where I spend most of my time spitting in trashcans (trying to be subtle, of course). We come home and find Bree has a fever of 103.5. Scared, we bathe her in warm water, and she improves.



Part 47 Brothers in arms


On Sunday morning I receive a surprise phone call from my youngest brother David, who lives in Austin. He shocks me with the disclosure that he will require surgery and/or chemo and radiation to treat his enlarged prostate. What are the odds!? I am devastated that he must join me on this frightening journey. He is confused about how to attack this problem, confronted with multiple options and a list of possible side effects from each.

I visit the surgery center the next morning for another scope of my esophagus. They discover that it is covered with many ulcers, and it could be up to two months before the esophagus is clean. I am required to return in another month. This distresses me, knowing that it will be even longer before I can return to my normal eating habits. I sip a little water that trickles down painfully, then I abruptly throw it up. Again I am overwhelmed by the unfairness of this all. I realize there is much more work ahead that I must prepare myself for. I, like my brother, must take up my weapons and go to battle.

My next meeting with Dr.Bu- leaves me filled with uncertainty and with more questions than answers regarding the nature of the ulcers in my neck and esophagus. I exit his office accompanied by Becah, who also is upset about the skills of our doctors. Mistakes have been made (including my initial diagnosis), at my expense. Can we trust any of these professionals to lead us along the correct path of action? Is there a correct path? We visit another gastroenterologist, Dr. A-, who has also consulted with me before. His nurse gives me a prescription for pills to be ingested with applesauce. But I can’t eat anything at this point. “Don’t they even know their patients?” Becah laments, and she begins to cry as we walk out of the office.