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.

Part 45 Treading water at the center of the universe


I return to the smaller surgery center to have my port replaced, disappointing for me as it means I am preparing for more chemo. I hoped that it would be over and I would not have to look at the port anymore, bulging from under the skin of my upper chest. I sit in the bed awaiting the surgery for an uncharacteristically long time for this facility, coughing on mucous and draining them of their Kleenex supply. It has been eight weeks since the radiation ended, and I don’t feel that I have made enough progress. I am treading water instead of swimming. Eventually the nurse comes with the injection, and I quickly drift off and escape my plight for a brief moment…

At work the next day I am exhausted despite a night of restful sleep. I drive to see Dr Gu- for a follow up visit, but he is at another office today, and I go back and forth between professional buildings trying to find his office. He has expressed doubts about his ability to correct my esophageal problem (perhaps fearful of what could happen if I retch again when he tries). Next week’s proposed chemo treatment is delayed until we can determine what to do regarding my esophagus. The following day I meet with Dr. Bu-, who admits that the “activity” on the PET scan could be the ulcers that Dr. Gu- found. My mood lightens, although he will not rule out at this time the possibility of prescribing more chemo.

At home Brooke and I walk to the park and make imaginary pizzas at the playground by placing wood shavings on round seats. I soon return to the house again after the aching groin pain suddenly returns. The ice pack treatment provides instant relief, but I am disturbed at its reemergence. I worry of course that disease could have spread to that area, but comfort myself some when I remember that my original swollen neck node was not painful, hoping they are not related in origin.

By the end of the week, a fight erupts between Becah and me. We suddenly find ourselves in a screaming match, even with the kids are in earshot. We have our arguments like any couple, but I am appalled that Becah can bring on this intensity to me now in my condition. She is being unreasonable, of course, because I need her help and support and her anger amplifies my pain. Crying, she is walking toward the door, threatening to leave.

A trial like mine dominates your world, and you see nothing that is not cloaked in this veil. You don’t understand the perspectives of others or appreciate their struggles and issues. You don’t even recognize the burden you have become to them and to yourself. Everything becomes “I”, with no room for “we” (much less “you”). I am the center of the universe, and the others must revolve their entire worlds around me. It has all become about how I have suffered, with no realization of how others are suffering as they sacrifice for me. My wife is afraid of what might happen to me, how she will manage if I am no longer here. She is exhausted, juggling work responsibilities as a consultant with arranging childcare and running me around for surgeries. The children are quite young. They don’t understand why their daddy is spending half of his life seeing doctors and, when not, spending the rest of his time lying in bed. They want me to play with them, pick them up from school, sit at the table with them and share dinner. Or at least tuck them in bed at night. I am absent from so much of their lives during this critical time, and they don’t understand why. We tell them some of what is happening to me, but shield them from too many particulars which will just scare them and cause them to have nightmares.

My world is shattering. And as the center of the universe, that cannot happen.

Part 44 When an “A” in not an “A”


Another PET scan. The procedure itself is easy, but there is still some anxiety wondering what may be creeping around inside you that the image will reveal. I don’t worry that much, but I have been overly optimistic regarding my timelines for conquering this disease, and at times am apprehensive about my future. I wait at work for Dr. N- to call with the results. It is almost time for me to leave, and I have called her five times today. She finally returns my call, informing me that I am “90% improved”, with residual problems being the swollen throat tissue which is impairing my ability to eat.

A score of 90% is usually fine with me. On a test, that is still an “A”, and I will take that and run with it any day. If an artist records an album that is 90% strong, I will buy it and endorse it. But with this frightening disease, nothing less than all clear, 100% will do. This is no place for “close enough”.

Dr. Bu – is also pleased with the scan, and thinks the continued activity could simply be the result of inflammation from treatment. He is concerned, however, about the potential for residual disease, so he orders two more rounds of chemo (is that like being in a bar and ordering two more rounds of drinks?). I am devastated at the prospect of more chemo and possibly more ensuing hospital time.

I return to the hospital to have my esophagus dilated. Dr. Gu-, one of the gastroenterologists that has treated me performs the procedure. I am finding that most procedures/surgeries require hours of your time in preparation and recovery, while the actual event is often brief. The operation itself lasts about four minutes, but I have waited and waited for nurses to come disconnect my IVs and doctors to give their blessings that I am fit to go home, and five hours later I finally can. They have discovered two ulcers in the esophagus and there is a small tear in the wall from when I retched during the operation.

It is a rainy day, the first one in a while. I continue to have trouble swallowing – in fact, I can’t tell any real difference at all despite the operation. CC comes over and we all watch the football movie “The Blind Side” (which I appreciate for its optimism). I sleep for five uninterrupted hours on the couch. I awake to another overcast day. My oldest daughter has strep throat. In the evening I go to our church to sing in the funeral service for a lady in our choir who succumbed at far too early an age to the same disease that has been knocking at my door. My life is still gray despite the brief flashes of color.

art 43 Simple surgeries and ice packs


I am back at the surgery center to have the port removed. It is early on a clear morning. I actually don’t mind this procedure, which should be uneventful. The staff is friendly and competent, and the facility itself is small, so there is a “folksiness” atmosphere that relaxes me that even the doctors’ technical jargon can’t dispel. I am there and back home in just a few hours. Riding home with my wife driving, I suggest we stop to shop for clothes at Old Navy, but she wisely refuses. I am still in a groggy, drug induced state and will barely remember later making such a request.

I work the rest of the week, tired often and self conscious again about my thinning hair, but plugging along nonetheless. I am forced to face my pressures and discomfort rather than running from them, which I guess must build character at least. Besides, someone has to pick up the tab – I can’t abandon work. At home I fix a special Cinco de Mayo meal for my family one night, dance with my children to keep myself alive and nurture their artistic leanings. I watch a bizarre but interesting rarely seen British film called “Privilege”, about media exploitation of a rock star to manipulate the public. Becah and I begin a marathon of Columbo episodes (featuring one of my favorite TV personalities) which maintains my attention and helps distract me from my ailments. I visit Dr. Mc- , who presents me with a clean scope report. I cry tears of happiness. But that night at home I experience a sharp and lingering pain and swelling in my groin, and I’m almost in tears of pain this time. We call “nurse” CC over to watch the kids in case I must be taken to the emergency room. She suggests placing an ice pack on the site, raising my feet on pillows, which we immediately try. Thankfully, the pain quickly leaves.

I am searching for some closure here that I cannot find. I feel that I have done my time and am ready for parole. Like Michael in the Godfather III, who exclaimed, “I try to get out and they keep pulling me back in!”

Part 42 White powder and black oil


I awake to an overcast sky, and stay home today. Television proclaims sad news – a huge oil spill has occurred off the Louisiana coast, and massive environmental damage is projected. The implications for the state’s lucrative seafood business are grand. And my Florida vacation this summer may be in jeopardy.

Our family has planned a trip to the white powdered Gulf coast of northern Florida, one of my favorite spots. I am already anticipating the trip, as May will be here tomorrow, which means summer, my favorite time, is almost here. I will still have to hold on until July for the vacation. But with a huge oil mass hovering in the Gulf, there are worries about what the beaches will look like in the very near future. The prospect of gobs of gooey, inky oil splotches all over that pristine area horrifies me. I long to rush there now, before the landscape is ruined for what I hear could be years. But some of us are still working, some are still in school, and some of us are still not healed yet, so the trip will wait.

Brooke is up crying at night, afraid of the geckos she sees outside crawling on the window above her bathtub. Bree has all “excellent” marks on her school progress report. The ups and downs of daily life go on. We go buy a new television the next day, since we discover we have no sound anymore on our set in the den. While out, we stop for Mexican food. Not only do I sit and watch, but I have to get up repeatedly to spit out mucous. This is miserable, and makes me want to avoid restaurants altogether. At home, we set up the new TV and watch the Astros play before checking out the Kentucky Derby. I watch a race on beautiful green grass, only to realize that it is a warm up race on another track. The actual Derby is run on a muddy turf, and I wonder how the horses maintain their footing at all. To my dismay, the sound on the new set also goes out, and I am exasperated spending time trying to find out why. At night, I sleep in bed for the first time in several days, and rest well.

Feeling refreshed the next morning, I am greeted by my family returning from church with a basket of cards and gifts for our entire family, sent by church members. I call Sony about my new set, informed that by simply turning the power strip off and on the problem is corrected. I realize I probably purchased a new set for nothing, but it is new, after all, so I simply plug the old unit into a bedroom outlet to watch in that room (the sound is fine). Sometimes there are no concrete answers for life’s dilemmas – you must simply unplug then re-plug the power strip.

Part 41 Lighter than college


On a breezy Monday morning I return to work, able to start some half days on the job. At the end of the morning I visit my doctor, weighing in at merely 155 pounds, probably lighter than even in college days. Better grab hold of something so the breeze won’t carry me away. This would be a good day to pull out some of my old tight clothes. Some of my nutritional levels are down, so I am prescribed vitamin supplements. I am told that I must practice eating in order to retrain my salivary glands. Becah buys me powdered weight gain supplements to add to milk to help bulk me up. Someone hands me a coke Icee and I drink a few sips. The afternoon is rough, because the mucous, chills, and fatigue have kicked in, as they do periodically, and there is no telling when they will leave. I walk Brooke to the park out of sheer refusal to give in to this. Returning home, we enter the kitchen, greeted by the smell of personal pizzas made with biscuit dough. A neighbor soon brings over bread pudding with whiskey sauce to top everything off. All I can do, however, is eat one bite of applesauce, and that is dinner for me.

The next morning I sleep in, well beyond my usual wake up time, and arrive at work at 9:45. I last 45 minutes before I return home. I start retching – dry heaves only, and call Becah at work to come home to rescue me. My fever is 100.6. I go to bed and sleep most of the afternoon. In the evening, Becah takes the kids to eat while I stay a home and finish reading a British novel “Absolute Beginners”, which I realize is disturbing me as being too negative. I don’t need anymore of that.

Today I stay home from work altogether, feeling better in the morning. My fever rises to 101 by early afternoon, though. Later it’s back to the center for a round of blood work, port test, urine sample, and chest x-ray. After another day of staying home from work, sleeping, and intermittent fever, I meet with my doctor, who surmises that I have a “touch of pneumonia”, probably caused by excessive mucous. My weight drops more (153.5 now). He wants the port-o-cath removed to prevent infection, and Dr. Br-, who put it in, agrees to remove it in a few days. Back home, my daughter Bree displays her batting skills with a little baseball in the front yard. I make bowtie pasta for the kids to eat and me to watch them eat. Before bed I notice more hair falling out – it has been about two weeks since the second round of chemo – which is bad since some had started growing back, and my eyebrows are actually bushy!

It is frightening when your body starts to rebel. What before seemed so familiar and predictable has become a stranger to me. I wonder now how I will look tomorrow, how I will function tomorrow, if I will ever adapt to this changing “me”.

Part 40 Honeysuckle idyll


In the evening Dr. Se- returns, prescribing me some “swish and spit” to numb my mouth (when everything else fails, just numb the whole thing!). He wants to set up a PET scan next week (which will be six weeks following the last radiation treatment). I am to get Anna (the head nurse at the chemo center) to prepare my chart so Drs. Se- and Bu- can review the results. If the scan is clean, the chemo ends.

Becah returns soon after. I read a Sierra Club article about the San Gabriel mountains outside of Los Angeles, and some more passages from Thich Nhat Hanh’s book “Breathe”, trying to practice rather than just read about its importance. Elvy, a nurse who is also from India, has been really calming, and even though she must leave at 7:00, she disconnects my IV. Free at last! I continue to read “When We Get to Surf City”. All said, despite the freedom from the IV this has been physically my worse day at the hospital regarding the mucous – my lips are now bloody! I sleep at night from 10:00 until about 1:30, awaking when a beeping noise from one of the machines goes off. After I get over that, I sleep again until 2:45 when I start choking on phlegm. I manage to sleep from 3:00 until 6:00 when the staff disturbs me to take some blood.

Friday morning is check out morning. I have been here one week, although it seems much longer. I return to my home, with lush green grass that will soon be manicured by the lawn men, and it is already beautiful. The scent of honeysuckle fills the air. I sit outside and go through the mail and instantly reconnect with the world (although some of the bills make me question my desire to be back!). I pick up Brooke from daycare and she is so happy. I get a big hug from Bree a few minutes later when she gets out of school. She lost a tooth last night, so her bright smile has a hole in it. Becah later takes the kids to a friend’s house, and I am free to do yoga while listening to Sam and Dave. I realize I have just invented “soul yoga”. The ensuing weekend days are cool in the mornings and warm in the afternoons. I play with Brooke on the backyard swing and walk her to Bree’s school (a.k.a. our park). I drive one evening to get gas in the car and to take the kids for a sandwich, my first time behind the wheel in a while. Another time I go on a long bicycle ride with the family through the neighborhood, with Brooke on a special seat to ride with us. We watch the Astros on TV, then play some whiffle ball in the front yard. Bree and I watch a part of the Narnia movie, “Prince Caspian”. All of these are special moments that I vow not to take for granted again.

All is not idyllic, though. I still struggle with serious mucous disturbance. I buy some jumbo-sized multivitamins to jump start my health, only to find that I can’t swallow them. Becah has cut a red ripe tomato and laced it with basil (both fresh from our new garden), but I can’t enjoy the dinner, and I am bummed at that.

Part 39 Which end is up and where did my wife go?


Time goes by slowly here. I sleep a few minutes, then wake up. Sometimes the room looks different to me – I seem to be having mini hallucinations from one of the meds they are giving me. At times I feel like I am on the ceiling, and the chart on the wall in front of me is on the floor. I look around and see I am wrong, and my bearings return. I lean my head to say something to Becah, only to realize that she is not there at all, but left thirty minutes ago. I drift off again, then awake to more disorientation. And the cycle continues…

At night I actually have a great sleep, uninterrupted by crazy dreams. M only disruption is from the two nurses who enter to take blood or blood pressure or some other test that they feel compelled to do regardless of time or my need for rest. They are very nice, though, and are operating off doctors’ orders, so how mad at them can I really get after all. My friend Steve drops by later in the day, discussing a book he read called “90 Minutes in Heaven” and telling me about his recent trip to the Bahamas (both of which at this moment sound about equally good places where I would rather be than here).

After he leaves I sleep again, only to abruptly awake to find my port leaking. After an inspection from medical staff, I am informed that it may need to be replaced, and they are puzzled as to why it should need replacing so soon. This means another operation, which I take as bad news. They try to contact Dr. Br- to come check it. I am especially unsettled as I am otherwise experiencing less fever and feel better in general. My blood pressure and temperature are fine. A test later in the morning, however, reveals that my port has a tear and will in fact need to be replaced. I take a quick nap only to discover another round of weird dreams. Dr. Se- interrupts them, entering in his subtle yet heroic fashion, telling me that someone probably accessed my port at a wrong angle. He orders an IV. Dr. Se- informs me that he only orders chemotherapy pre radiation and during radiation only – never post, and will confer with my oncologist about doing away with my proposed May and June treatments. I am elated at this news and the prospect of no more suffering in the name of treatment. He arranges for me to have fluids pumped through my tube and Dr. Br- comes in later and agrees to hold off replacing the port until a decision is made on my treatment plan. Then I will need only one more hospital trip – to get the port out – and I will be through with all of this.

After another good night’s sleep, I am visited by my primary physician and nurse. I am still nauseated and congested, my potassium is low, and I have so much phlegm that by 9:30 I am actually gagging. Despite all this, I am told that tomorrow could be the discharge date. I am also experiencing excessive fluids from the other end too, the first major bout of this since treatment started. I am jittery, and all these symptoms have caused me to be more down today despite the prospect of leaving soon. It is earth day. I wish I could celebrate, although I am happy to be on this side of it.

My IV is causing problems; the fluids sting when they are pushed through, so that means sticking me again to start a new one. As always, I turn my head and refuse to look at where the needle is imbedded in me. Becah comes and brings me a magazine to try to help reconnect me to the world. She also gives me an orange popsicle, and a rush of sweet intensity fills my taste buds. After a few moments, though, the pleasant taste changes to strange, and I put it down. Also, the swallowing contributes to my mucous problems, so it becomes counterproductive anyway. Soon the staff hurries in and rushes me to another room to test my port, very distressing because I must stop watching a great movie that I am engrossed in, “The Day the Earth Stood Still”, one of the few programs I’ve even bothered to watch.

Part 38

Part 38 The source of true suffering


Monday morning I find myself still in this miserable place. The place isn’t really miserable, it is just my state of mind that I have projected on to this hospital, but I’ve done it so well that the building itself and all its inhabitants are oppressive. Becah dropped by at lunch time, watching me attempt a clear liquid diet (Sprite and soup broth) which didn’t really work. A warm shower later in the evening, however, does wonders. The night is memorable for someone playing the bouncy Christmas song “Marshmallow World” (although it is April). I sip on a can of Ensure, fighting the immediate urge to throw up soon after.

I awake the next morning nauseous again with (of course) my raging wet mouth, flying through boxes of Kleenex as fast as the staff can bring them to me. My long time general practitioner drops in to see me, saying very little but lightening my mood some simply because he is a familiar face. He is followed soon after by my otolaryngologist who I unfairly regard as the person who set all this torture into motion. He informs me that the excessive mucous and instability of my salivary glands are the result of radiation, and that my condition will improve if I can just ride it out long enough. They decide to not scope me today but will instead wait until my condition improves. They do, however, wheel me out for a chest x-ray for some unfathomable reason.

Becah has called my insurance company, who assure her that they will pick up the tab for all these physicians and tests and Kleenex boxes. This comforts me greatly, and in time I will discover that true suffering comes not from all the needles and potions and rays but rather from the astronomical bills that are deposited in your mailbox and the ever present reminders that you are stuck with them should the insurance company refuse to pay.

By evening my temperature hovers around 100, dropping and rising intermittently. The mucous and mouth sores are worse today than ever. Becah is with me again at dinner time, watching TV. Suddenly a kind looking Indian physician enters the room, smiles, and sits down beside me. He leans over, introduces himself as Dr. Se- , and gently describes my status. I have apparently been administered a “kick ass treatment”, primarily in the choice of following radiation with another round of chemo (which apparently landed me here). Dr. Se- says it will be six weeks before the mouth situation will significantly improve. He suggests I gargle with water and baking soda. He likes the look of my x-ray. I find that his voice – maybe just his presence – is infinitely relaxing to me, and I wish he would never leave.

fun stuff from May

My Gram, my cousin Kasey and her twins, Bree and Brooke on Mother's Day!

My Swimmer, Breanna, and my ballerina, Brooke.

My hearts!

C.C. and the ladies!

Grammie and Poppers with the girlies!

CHAPTER FOUR

DOWN FOR THE COUNT


Part 37 Admit one


The hospital, located in north the Houston vicinity, is large, with around 300 beds. Thousands of inpatient and outpatient surgeries are performed here annually. Tens of thousands of people each year visit the emergency rooms. Somehow, I find myself being one of these visitors and lying in one of these beds.

I have read that the facility has been ranked among the nation’s best in some adult specialty areas of service. It is also within easy driving range of my home. So these factors should bring me some comfort. The problem is, though, that I simply feel miserable. I arrived last night in a blur of nausea and fever. It is Saturday morning. The chills and fever are lingering, and I have been waking and throwing up during the night. When I am not sick, I lie here listless, staring at the chart on the wall that welcomes me to this facility, proclaims today’s date, and gives me the name of the nurse who will be caring for me. Most of the day I simply do nothing but grieve and question how this happened. I wish my physicians were here – not the hospital weekend fillers who have dropped by to see me – but the ones who prescribed this medicinal combo of chemo radiation chemo that they thought I was tough enough to handle. I’d like to give them a few choice words right now. But that is only if I can gather the energy to do so.

I have a book on the table called “When We Get to Surf City”, about a journalist who covered a tour of Jan and Dean and wound up playing gigs with the band. It sits atop several magazines and beside a few inspirational books. A remote for the TV lies next to these. But I just lie in bed, feeling too bad to engage in anything.

Very early Sunday morning I awake. 2:30 a.m. I have been enduring distressing dreams of Becah cheating on me, then spending huge amounts of money redecorating the house. I don’t know which one upsets me most. I flip on TV, ESPN, and watch a boxing special on ex-champion Riddick Bowe. I am afraid to go back asleep, where more strange dreams will grab me. After my 3:30 shot I drift off again as I feel my fever weaken. But when I awake, I experience a sensation of burning bile in my mouth along with incredible mucous. After a long morning of wall staring, Becah and the kids come by and temporarily break me out of my morbidity.

Part 36 Poison in, poison out/a walk in the park


I awake at three a.m., anxious to get my final round of chemotherapy started and soon completed. I am optimistic. Becah drives me back to the center. I crank up the song “I’m Just a Singer in a Rock and Roll Band” by the Moody Blues to get my blood flowing, but Becah complains that it is a little too much for her first thing in the morning. I ask the nurse to switch TV channels, from CNN to the “home network” in efforts to avoid hearing bad news but still divert myself from concentrating on the comments of the large group sitting behind me that yaks endlessly. The next day I weigh in at 169, still lighter than usual, but blood pressure is okay and I am ready. A man from Aransas Pass named Judd sits by me, talking about his weekly drive to the center for treatment that has been ongoing for 10 years. This unsettles me greatly at the prospect that a person could have to undergo this for so long. “I’m not ready to give up”, he boldly proclaims, and I respect his courage.

For two more days I sit in chairs hooked to IVs that leisurely drip potions into my body that are intended to complete the healing process. It still puzzles me that one must put poison in the body to combat the effects of poison. My first round with this treatment in January did not cause great physical discomfort (it was more emotional), so round two is fairly uneventful. I still have symptoms from the radiation, though, and my feeding tube has strangely started leaking again since the chemo was initiated. But my taste sensation is improving – the Dr. Pepper and Sprite that I sample are not bad. And my attitude, always the key component, is generally positive.

I am determined to move on with life. This interruption for the past few months has been uncomfortable, embarrassing, at times painful, and challenging, but I will emerge victorious. There is nothing that I have experienced that I can’t handle for a little while longer. And then it will be like before. My energy will return. I will eat normally and the feeding tube and all the IVs will be disconnected. As the doctor told me, the bad days will soon all be just a dim memory.

Or so I think. Little could I realize that I have been on the proverbial walk in the park. What awaits me I could never have foreseen, and if I could have, I might have turned back and never gone down this road.

Part 35 Traveler


For a few days I go back to work, struggling to function on very little sleep at night and intensely watery mouth. A visit to my otolaryngologist informs me that a scope of my throat will be done but that my problems I am experiencing are common following radiation to the throat. I take off work midweek to make up much needed sleep during the day, but my difficulties resting at night persist. The following day I am more rested and productive early in the day at work. I drive to Tomball later in the morning and meet with Dr. Bu- , who introduces me to his friend Rob, someone who has travelled my path before and who discusses with me for 45 minutes his experiences of being treated for a diseased esophagus. I should feel better that his regimen entailed two radiation sessions per day rather than my one. But his tale about living off a feeding tube for six months bothers me (being much longer than I had planned). He and Dr. Bu- concur that it may take several weeks before the effects of radiation dissipate. I am relieved again that this aspect of my condition is normal. Rob also informs me that his treatment occurred five years ago and since then he has gradually regained 95% of his taste. The only lasting effect was that he no longer grows hair on his neck (meaning for him a quicker shave each morning!).

At the end of the work week I meekly try to get out of bed at five a.m., then weaken and crawl back into bed. I repeat this again at six. Then suddenly I dredge up some bravery and stand up. To my amazement, it works, and I drive to work and manage to get through despite the usual symptoms. Back at home, I ride my bike some with my girls at their nearby school and later find myself sitting alone watching High School Musical 3 as my children and some friends sing karaoke upstairs. Before bedtime I look in the mirror and discover my previously thinning eyebrows are getting darker and thicker.

The weekend is filled with children playing while I watch the Astros (dressed in 1965 jerseys) play the Phillies on Saturday, view Joel Osteen and listen to keyboard wizard Rick Wakeman on Sunday, and occasionally get some energy to ride bikes and soak up some sun. I am preparing myself for a farewell round of chemo that will start Monday as ammunition to preserve my body’s health and reduce the chances that the darkness can regroup any fragments to attack me again.

Part 33 Reprieve


Radiation does not simply let loose its grip as soon as treatment stops. The effects are delayed – for days, weeks after I experience the aftermath. Continued chills, fatigue, salivary problems. I wake up some nights gagging on the mucous that rages in my mouth. And these are just the physical ailments. Psychologically, I am in just as much distress. But I am amazed when I look in the mirror and see how good my face and neck look! It is almost back to normal, no need for scarves to hide the damage. I have time finally to reflect. Until now it has been a blur of doctor appointments, medical options, treatment sessions, reactions to all that by my brain and body…For a short time I have a reprieve, and brief as it may be, I will savor it.

March 28 is a bright and sunny Sunday, with a cool breeze blowing. I make my way to church for the first time in a while. Anne-Marie, one of the ministers, includes Bree in her sermon, drawing from an incident the week before where Bree had stood up in the pew, grasping for dust particles she saw in the light streaming through the window. One of the female choir singers enters in her wheelchair. She has been temporarily immobilized by disease and cannot stand. Another male singer is also back after a rough chemotherapy regimen. He looks tentative, but at least he is on his feet. After the service, our children join others outside as they ride donkeys and touch other animals in a petting zoo, brought in for the day. Later in the afternoon, I take Bree to see the new film adaptation of one of my favorite books of all, “Alice in Wonderland”. Tim Burton’s version takes some serious liberties with the material, but we both enjoy it. After we arrived home, Bree got on her bicycle and somehow learned to ride by herself! I feel much better today, although I still can’t eat. It may be due to it being a very positive day, or maybe it is just my daughter’s description of the day as being “wonderful”.



Part 34 Rough rebirth


I return to work the next week. I am quite tired each day, occasionally leaving early to go home and rest. At night, there is more coughing and gagging, with little sleep as a result. I sip a Dr. Pepper, which is tasty while not quite sweet enough. Sores have formed on the back of my mouth. The mucous seems to be getting worse, and I am still chilled most of the time. I awake on Saturday after a rough night and slap a patch on my arm. I am clearly limping along now, glad to be officially through with radiation but depressed at the lingering effects that won’t go away. I spill Robitussin all over the floor, then as Becah is assisting me with the tube, water is spilled all over me. These mishaps are becoming common, and I never get accustomed to them. After days of no radiation I see little discernable improvement in my quest for normal.

The relatives soon return to dye Easter eggs. I hop on my bike that has been newly washed and pumped with air, and join Bree in a ride around the block. It is a warm, bright day with flowers freshly blooming everywhere and for a moment I can throw off my burdens and I am immersed in this time and I realize this is as good as it gets.

Easter brings the promise of rebirth, and it has never been more poignant than today. At church I find that flowers in the sanctuary have been donated in my name– one given by my family, one donated by the choir. Later for our holiday meal at my parents house, my brothers and I watch Bree and Brooke hunt for Easter eggs in the back yard. My mother has made her usual stellar dinner and my niece Laura has made a key lime pie, but I can’t eat a bite. If there is to be a miracle this season, I see it will be subtle, incremental, at its own time and pace.

Part 32 Switch off the machines


Becah accompanies me to treatment the following overcast and drizzly day, while the kids are off to Dallas with their grandmother. More vomiting again following radiation. At home I lie around listlessly, chilled, watching shows like the 25 Biggest TV Blunders and other nonsense to try to divert my mind. Becah accompanies me again on my midweek session, where I experience a delay as the technicians try to get the machine to work. I am sick again after a sunnier and cooler Thursday treatment, returning home to rest and watch a “Vegas” rerun. I stay home Friday so the radiation machine can be tinkered with, and the children return from Dallas in time for “Fun Friday”. What a life they have! Traveling and parties. Of course, they also have to live with the uncertainty of what will happen to their battered daddy, which takes the shimmer off.

The next day - a rainy Saturday - is somehow cozy to me, but the evening is rough. Bouts of coughing wake me often at night, enabling me to taste the saltiness in my mouth. The next day I keep Brooke while Becah takes Bree to Reliant Stadium to see Selena Gomez and rising star Justin Bieber at the rodeo. My parents drop by to visit before GG comes back to stay for her “rotation”.

I eagerly greet Monday – my 38th radiation session. I am chilled and dragging from fatigue, but none of that matters. I simply have to get through until…Tuesday. This day is here at last. I wait in the chemo/IV room before my final treatment, shaking and shaking the vial. On CNN, they announce that the House has actually passed the President’s medical reform bill. My vial doesn’t clear, though, and they replace it. After eventually getting my shot (which could be stinging sharply but which I don’t feel because of my joy at this moment), I go into the waiting room for my radiation. For the last time I will see the mother and her small children, who squabble daily as they play with puzzles, waiting impatiently for their dad’s treatment. I say goodbye to a man who has been undergoing treatment for a liver disease but who will soon be celebrating the end of his sessions with a barbeque lunch (I secretly envy that he can at least eat a sandwich – something that I have not been able to do). They soon call for me. One more time the mask slips over my face, the machine arcs slowly and hazily above my head, and in 22 minutes it is silent for good.

Part 31 The light at the end of the tunnel


The new week comes with a brightness despite the rain. I am now down to my last week of treatments. But Dr. N- now claims I need a total of 39 radiation sessions! It seems that because of my fair skin they have been administering less intense rays for my protection, so I will need more zaps. I am devastated, since I was going to ask her if we could wrap all this up at the end of the week with number 33 (only two short of the intended 35, and after all, why come back next week for a mere pair of treatments?). She will hear none of this (she actually looks shocked that I suggest such an outrageous thing). I reel after this and struggle to maintain my balance like a punch drunk boxer leaning against the ropes.

At home, Bree sits in the kitchen and reads us books she wrote and illustrated, and her creativity makes me feel almost alive. The kids just carry on, as all of this madness ensues, either out of innocence or bravery, they just keep on going…

The sun warms the next few days as I break the 30 barrier in treatments. The steroid injections are probably lifting my mood along with the weather. I play music by the Dave Clark Five to and from the center, and I am positive now that I am reaching back to my childhood to help me get through this. Looking in the mirror, I find that my neck seems to be healing some (like when a bad sunburn eventually turns into a tan). The new phenergan patch that I place on me at night keeps me in and out of sleep until two a.m., with minor hallucinations as an added bonus (?).

A beautiful Friday dumps pollen all over my car, and I am excited that Spring is finally arriving. In the past, I enjoyed the cold weather and was not in a hurry to see it go. But not anymore. I drive over for treatment number 33, which I had hoped could have been my last. Dr. Bu- can’t decide between Egypt and Destin for his Spring break vacation. He is leaning toward Egypt, but hasn’t booked the trip yet (although it is next week!).

I awake Saturday morning, again with very little sleep from the night and with a salty, dry mouth, but it is a brisk, clear morning, and I go outside to wash the pollen off my car while Becah plants flowers. The children are off to Beaumont with CC. I weed and feed and water the yard, then rest by torturing myself watching FIT TV food shows. At night Becah goes out to dinner with a friend and I listen to the Moody Blues “Seventh Sojourn” CD while James Cagney (in “White Heat) acts up on TV. I sleep in the next day (gaining an extra hour from daylight saving’s time). My parents come over in the afternoon to plant a tomato garden, and late in the day the kids return. I close out the weekend by watching an old James Darren beach movie called “For Those Who Think Young”, feeling almost euphoric from my newly administered patch.

At Kingwood the next morning I see Dr. N- , who checks with me periodically to see if I am surviving her onslaught. I ask her questions about diet, wondering if poor choices in the past hurt me or if I could improve my chances with a better future diet. She, like most physicians I have encountered, downplays the importance of diet, but when asked about the nature of the virus which she thinks was responsible for my condition, she is unable to shed much light. I am learning that when I talk to doctors I often leave as I came – with a pocketful of unanswered questions. Doctors may be intelligent and well trained, but the origins of this disease are quite complex, as are the individuals to whom it strikes. The mystery remains. When leaving the building, I am blindsided by a wave of nausea, and we have to stop the car for me to be sick. At home, I suffer another attack.

Part 30 Associations


I have discovered lately that some of the kids’ TV programs are distressing to me. It’s not the shows themselves, it is my own discomfort. In the morning, I am lying under the sheets faintly hearing coming from the den the refrain from one of the songs from “Agent Oso”, a show about (what else?) a bear who is a secret agent. In the late afternoon I hear the theme song from Disney’s “ Wizards of Waverly Place”, a catchy tune, but now it grabs my brain and relentlessly hangs on into the night (“everything is not what it seems, everything is not what it seems…”). These associations between my mental state and my environment can be unbearable, and I can’t seem to turn them off. I can only switch them to other associations, but the misery continues…


I awake at the end of my treatment week at 12:30 one early morning with an awful salty taste in my mouth. The cumulative effects of this week have taken their toll. I finish treatment number 28, though, and I’m almost out of these woods. Driving home, though, the queasiness kicks in and I am rethinking all this. I grind up my pills for the first time, as swallowing them becomes too challenging. Everything – even water – tastes horrible. I fall asleep early and somehow sleep, with scant interruptions, from one in the afternoon until 6:45 the next morning! Blessed escape…

I start my weekend jogging, trying to jar some improvement into my mood. Becah’s mom takes the kids to her house, after which Becah does some yard work. My salty mouth taste is alleviated some by sipping iced tea, and I kick back on the couch and watch the TAMI show, an old concert featuring Jan and Dean and the Rolling Stones. It surprisingly grabs and maintains my interest and is enjoyable throughout, no easy task in my present state of attitude. The next morning the house is quiet and the kids are still gone and despite my adoration for them it is better sometimes for me to wrestle with all this having fewer people around. When Becah leaves for the store, I consider another Joel Sunday sermon about choosing happiness. My friend Mike comes over in the afternoon, and we reminisce about some of the music we have written and recorded together and how we must do more. Later CC brings the children back, along with her mother GG who has returned for another set of days to be our extra pair of hands. For some ridiculous reason in my present condition, I have become enamored with watching food programs on FIT TV (“Lyon in the Kitchen”); obtaining all these great recipes for stuff I can’t eat (talk about masochism). At night I lose my temper before bedtime as I first spill my ground pain pills, then watch them clog up my tube when I try to ingest them.

Part 29 Redneck


The winter is officially fading. But the skies are raining and it’s too early for Spring; anything goes for weather as March arrives. And I still feel the chill of the previous month all through my body. The pain and discomfort and redness in my neck intensify, as does the fatigue. I respond by taking more pills. On top of that, Bree now has strep throat. Sorry, but one sick person at a time is all this family can accommodate. You must wait your turn. The next morning is brighter but still cold. I discuss with my doctor having another round of chemotherapy. The radiation machine is down and I must wait even longer for treatment. But after I finally get home and have lunch I lie back and relax, appreciating this healing place called home.

The next morning, clear and frosty again, finds everyone in the house sick; Becah and Brooke are throwing up while Bree endures the end of her bout with strep. I drive to treatment feeling somewhat lucky by comparison. The Rolling Stones are singing to me on my drive and as I listen to their lyrics for a change I am amazed at how many of their songs are downright disrespectful to women. Have I never noticed this before? Or am I just now more sensitive to these words now that the women in my life are suffering?

I soon return to Tomball for an intermittent round of chemo, back to the room filled with IV poles. Abe, the male nurse, assists me during chemotherapy. When another nurse asks for alcohol, he asks, “which kind? Jack? Or Patron?”. My eyes glaze over as I watch what truly appears to be “the great wasteland”(TV). Meryl vs. Sandra at the Oscars (who cares, since the awards are all politics anyway?). Then we get Jessica Simpson complaining to Oprah that singer John Mayer said she (Jessica) was great in bed. Tiger Woods is supposedly getting more respect because his approval rating is up to 22%, and compared to other womanizers like Charlie Sheen that is good.(?) Then I get yet another drug commercial for improving some malady with a rattled off list of side effects that would frighten anyone. But at least such nonsense distracts me from real tragedies going on in the world....

Back at the Kingwood center one shiny morning, I step out of my car, wrapping the scarf cautiously around my neck. The wind is bracing, and I briskly stride for the warmth of the inside. I stop in the bathroom before entering the doctor’s office. Unwrapping the scarf I bring myself to look closely at my neck, flinching as I do so. It is relentlessly red, with what appears to be burn marks with white streaks of pus seeping through. I dab them tentatively with wet paper towels. For the last week my neck has looked like this, not just sunburned but desert sunburned. I remember a young Clint Eastwood in “The Good, the Bad, and the Ugly”, where Eli Wallach dragged him mercilessly across arid sands – afterward, Clint’s face looked a lot like my neck looks now. Immediately after each treatment I have applied Aquafor to my neck, an ointment that must really be morphine in a tube, because it instantly takes away the stinging pain. (Let me stop now and do a brief commercial and give my testimonial to this wonder drug). But prior to radiation, I can have no lotions whatsoever on my neck – doctor’s command – as they may interfere with the radiation’s ability to penetrate my skin. So I must lightly dab away the burning sensation and try to make myself more presentable, then cautiously re-wrap my neck, before walking in the office.

Each time I come here and sign in, I look around the room. I see so many tortured looking souls, waiting to see a doctor, hoping for someone to give them some good news, to remove their afflictions, or at least make their lives more bearable. I wonder if I appear as pathetic to them as they do to me.

Part 28 Meanwhile life continues…

GG, Becah’s grandmother, enjoys taking leisurely walks these days to Randalls and having coffee at the outside tables, when she is not busy washing our clothes and dishes and straightening our home and performing impromptu nursing jobs for me. Becah likes to bring home Mexican food at night for everyone (except me) to eat; I sit at the table and watch while drinking fortified shake after fortified shakes trying to regain my lost weight which has now dropped over 11 pounds. At bedtime, I get regularly interrupted as I try to read nursery rhymes to Brooke, who decides, I guess, that at age three she is big enough to read them to me.

The next few days conclude a better week in general as it warms a little outside and they have made me the new mask to improve my treatment. However, I try to eat food again to no avail, and the tube is leaking again when I eat. My mouth has gone berserk, jumping back and forth between excessive dryness and excessive moisture. My blood pressure has been so low that for two successive days I get no shots for my salivary glands, initiating fears that too much damage is being done to my system in the name of “treatment”. Becah returns GG to her apartment for a reprieve in her caretaking duties and, with the kids, meets a friend for dinner. I rest, then get revitalized watching rock concerts on DVDs and can’t stop tapping my feet despite myself.

Bright sun on Saturday morning can’t take the chill off my body – my neck is much redder now due to the radiation. My mouth is drier than I imagined it could be. We drive to my parents’ house to celebrate my mother’s 84th birthday. We stand in the backyard while my mom gathers lemon seeds for the kids to take home and plant so we can have lemon trees in our back yard. At night, our family lies down together on the couch and watches the surprisingly touching animated film “Up”. I relax the next morning at home while Becah goes to church and lunch. I appreciate the house and the quiet. Although I am strengthened by others and need interpersonal activities to keep my mind off all this, today I am content to just wallow in it, for better or worse. Sometimes I struggle to do anything, that is how debilitating this disease can be. And I don’t feel like I have it as bad as many do. The pain has been bearable.

It is probably a good thing that I can’t foresee the harder days that await me around the bend.

Envying Job continues

Part 26 The double-edged light of day


“To Our Children’s Children’s Children” by the Moody Blues is an uplifting and inspiring CD to listen to on a sunny cold morning driving to your radiation session. Don’t let the sunshine fool you, though. It doesn’t always brighten a mood. Sometimes the crystal clarity of the new day is a jarring reminder that your previous night’s dreams and fantasies are just that – dreams and fantasies. It is easy to let the dark cloak the reality of the light that I must now face. I try the eggs this morning, but they don’t work. Dropping Brooke off at Kathy’s house is pleasant, though, and now with some music (and, even though it has awakened me to reality, a beautiful day) I find that I feel alright. At the center, I weigh in, finding that my weight has dropped to 168, and because my blood pressure has dropped too low, I am unable to get my shot. This is a double- edged sword (or should I say, needle?). I am relieved to not be stabbed again in the stomach with the ever present chance of throbbing bee sting afterward. But I am also scared that without these shots my salivary glands could be irreparably damaged. It is bad enough now that I am temporarily resorting to tube feeding, but my sights are set to return to normal eating as soon as I can. I will need functioning salivary glands to do this.



Part 27 Some observations about health care, and the $834 shot


I have been watching the politicians duke it out in the debate over health care reform. President Obama is intent on leaving an improved system as a hallmark of his presidency even as he is attacked for his idealistic “something for everyone” policies on medicine. The Republicans want free enterprise to solve the problem and take everyone in its arms. Right, I think, like how the Enron leaders took care of their shareholders, and how the Wall Street brokers sold customers a pile of empty promises while raking in the profits.
I know one thing. I look over a statement of charges for my treatments. On the sheet is a billing for the cost of one (just one) of my shots for my salivary gland stimulation. $834. The shock of the amount manages to make me grimace and laugh out loud simultaneously. If that isn’t enough to convince you of the insanity of health costs, I don’t know what is. Most real people are incapable of facing up to such outrageous bills and living to tell about them. It is true that if you have great coverage, your insurance company will pick up whatever part of the tab is left over after the facility writes off the rest (as they inevitably will, realizing that nobody really finds this remotely acceptable or humorous at any level). But having done this, they will simply pass the expenses right back to us in the form of higher premiums and higher out-of-pocket ceilings. And what about those without medical coverage at all? They crumble under the weight of these costs and blow away. It is amazing how real all this gets when you are the patient and you see things from this side of health.

part 25

Part 25 Hey, this isn’t so bad – I’m almost halfway through (and other jokes)


Another day follows, with similar weather. I notice, though, that my mouth is getting sorer and mucous is intensifying, becoming quite uncomfortable, more so even than the excessive dryness. Dr. Bu- is concerned enough about my condition today that he will not initiate the erbotux drug and chemo combo to be given concurrent with my radiation. But the radiation will be given no matter what. To my surprise, I find that today will be treatment 15. I allow myself the luxury of thinking I am about midway through this process (this will prove to be a delusion, but more of that later), giving my emotions a slight reprieve. I even reflect that I haven’t really felt that bad, that this whole experience has not been so difficult after all. Driving back, as a slight whisper of reality, I experience some very faint nausea, but nothing too distressing. I am very tired, though, and arriving home in the early afternoon, I sleep a few hours. Waking up, I find I am struggling to keep going, and doze off periodically before officially retiring to sleep. I have a very rough night and wake up often, tonight with a fever.

I rebound the next morning compliments of a warm bath. Becah accompanies me today to the session, which is fairly uneventful. Back at one, I am quickly asleep again. But I get a reprieve and exercise for awhile. After watching everyone eat, Bree and I rest on the bed and watch a little TV before time to tuck the kids in and go to sleep myself.

The next day Brooke is in an uncharacteristically bad mood, demanding an assortment of foods for breakfast and unhappy with them all. Bree lets me win three games of tic-tac-toe because of “my treatments”. The bad salty taste and mucous in my mouth are getting to me, and sores will begin forming in successive days, compounding the problem. My mood is progressively declining, and quickly. I will learn that popping pain pills late at night and sitting in bed propped up with three pillows actually help me sleep much better at night, though. The slightly warming trend in the weather offsets the pain somewhat.

Saturday morning brings a reprieve from the grind of treatments, and lounging with the family on the couch is great. We go out later to a furniture store to look for a new couch. Back home, I call my friend Rob who lives up in Colorado. We go back to junior high days when all was bright in the world (or so it seems, looking back). After talking, I exercise while watching John Fogarty live at the Albert Hall on DVD. The weekend concludes with the relatives/“nursing staff” returning to help out.

The new week starts off with a quick treatment and my being in a surprisingly good mood. I am very sleepy the first day, though, and rest a good bit at home. Snow is predicted for the following day (we actually only get a few flakes), and I drag to treatment, yawning frequently. By midweek, I find myself sitting in my car in the parking lot of the treatment center. I hesitate to even get out. When I get out and start across the street, the bracing cold shoots through me, and briefly, I realize all of this is almost more than I can bear. My whole life has turned 360. I pull my scarf around my neck and quickly stride for the door. I have gone too far to turn back now. Besides, where would I go? It turns out to be a longer treatment day today, with the addition of the erbotux drug supplement. I learn they will be making a new mask for me to make for even more precise treatment in the future. This makes me optimistic and I respect their diligence at doing this right. At home finally, I pour the Ensure into my tube, spilling it in the process. I will learn that this will be a common occurrence that nonetheless will always frustrate and distress me and make me miss incredibly the joy of eating solid food like a normal person. What we take for granted…

Part 23 and 24

Part 23 “No line on the horizon”


I have now reached the one-third mark, a milestone of sorts, and I finally allow myself to look back (beyond the present moment) to what I have accomplished. I still have far too much to go, though, to anticipate completion. The peak of this Everest is still too far off. Becah accompanies me on this trip, welcomed since I usually make these treks alone. I weigh in today at 169.8, a big drop. I am on my fourth successive day struggling with a dark mood despite my reaching double digits on treatments. The shot today stings (I guess I didn’t shake the vial hard enough) and my dry mouth is worse. The techs make many alternations positioning me today, and I am getting irritated. Never mind that their obsessiveness and precision will result in zeroing in on the target that is trying to rob me of my life!

After treatment we visit Dr. Gu-, another specialist who is supposed to be the g-tube expert. He demonstrates proper use of the tube, and I must admit I feel much better now (I also am more happy that I can exercise again with this adjustment).

Despite my better status, I endure a rough night, waking hourly with dry mouth and strange pains in my stomach (in the area of the tube). In the early morning Brooke sits by me in bed, comforting me with assurances that she loves me. It is a bright, cold, clear morning as I drive to Kingwood, listening to U2’s “No Line on the Horizon” (an ominous title if there ever was one). More waiting. So much of the time I spend waiting to see doctors, nurses, staff…just waiting. It’s the waiting that drags all this out. Sometimes I think this is worse than the anxiety of meeting with the doctors, the shots, and the treatment sessions themselves. I go into a small room and pour a Boost into my tube for nourishment before I am finally able to enter the radiation room.

Back at home, after resting and after the kids return from school, the kids and I sit by the fireplace and watch the Berenstein Bears on TV. Bree and Becah return from the store and make pizza together. It looks delicious, and I long for real food again. I find that I have reached the place where they said I eventually would arrive. I struggle with eating orally and for the most part must consume a liquid diet through the feeding tube. I pop a new pain pill tonight and feel very relaxed. I have used these very sparingly thus far, but there are times when I just need one. My mood is improving today. To top it all off, I go to the mailbox and discover a huge envelope filled with letters and cards from the choir members!


Part 24 Saline flushes and other tricks


The next morning’s treatment is preceded by my low blood pressure that requires a saline flush and other tricks to elevate it. The nurse has trouble accessing my port-o-cath, and resorts to giving me an IV in an arm. That night at home, Becah is enjoying a healthy pesto salad dish, inspired no doubt in part by looking at my unhealthy self with a dry mouth and eating through a tube. At least I am serving as an inspiration of how not to end up.

After another long night, a rainy and cold morning greets me. I try to warm up by sipping coffee and trying a little oatmeal, but my mouth is rougher and drier, so swallowing is hard. I drive to Kingwood listening to music by Yes, always one of my very favorite bands. Their music is as inspiring as you can get. Songs like “Something’s Coming” and “Survival” seem appropriate for the moment. Treatment 13 sees my blood pressure in better shape today and my mood continues to be brighter despite the dark day.

At home, after resting I exercise then watch a “Prisoner” episode (I will eventually make it through the series). When Bree returns from school it’s kid TV, an episode of iCarly followed by checking emails. The many well wishes uplift me more. My dinner options are dwindling – rice and broccoli just barely cuts it. After helping Brooke bathe, I talk on the phone to a choir member, Darla, who remarks that every Sunday someone comments about me. Before bed, Bree relates the following words of wisdom to Becah: “I want GG to leave because that will mean daddy’s treatments are over and he can go back to cooking and washing dishes and you can pay more attention to me”.

It continues to be frigid the next morning and my mouth is dry like the Sahara. I try to douse it with coffee and milk. On the drive to treatment I listen to more Yes music, an album called “Magnification” which like all their music elevates my mood like few other artists can. This time in the radiation room they line me up right the first time, and I also get a roll of Transpore tape free! The little things now excite me (sad in this case that I am overjoyed at receiving gifts of special adhesives that keep my tube fitted securely). The reality though is that my tube has become a constant torment to me and I am exasperated in coming up with ways to live with it. My doctor says I am looking good, despite the fact that my blood pressure has dipped again.

Becah and the girls hang out with the neighbors and others next door in what has become known as “Fun Friday”. This is a more respectable name than its former one – “beer Friday” (when the little kids start saying, “hey mom, is it beer Friday today?” you know it’s time for a change). I opt to dodge the ladies’ gossip and instead watch a concert DVD, Moody Blues Live at the Greek Theater, which I enjoy despite everything. Positive literature is great but nothing lifts you like music.

After a very cold night with little sleep I have breakfast with the kids on the pull-out couch (an egg kolache which I manage to eat despite the dry mouth). The sun creeps out as I rest on the couch later, while Becah takes the kids shopping. No treatments today – a blessed Saturday free of all that. We celebrate an early Valentine’s Day, with shirts for dad, necklace for mom, and the “Glee” TV show CD for GG (since she never misses an episode). Roses in a vase decorate the kitchen table where Becah, becoming quite the chef, has prepared salmon and spinach salad for herself and GG while I eat eggs again (since I am able to eat little else).

I get up so often the following night that I simply sleep on the couch, lying there on a very gradually warming morning watching a cardinal in the yard. The family has left for church. I alternate between reading Wayne Dyer’s “Wisdom Through the Ages” (he discusses going inside your mind and creating a positive kingdom there, perpetuating health by refusing to be upset by outside sources) and Thich Nhat Hanh’s “The World We Have” (which reminds us that we are one with nature and how we must preserve it).
Later, as the weather warms I wash the car and with the kids draw chalk animals on the driveway. I attempt to eat ravioli, rice, and vegetables for dinner. It takes an hour to eat (because of my dry mouth), but I finish most of it and am proud of my accomplishment.

Again on the couch wrestling with a rough mouth. I enjoy brushing Brooke’s fine, long hair. I face the bright cold morning, putting on “The Remembering” by Yes because it is bold and beautiful enough to honor this day. At the treatment center I watch ad after ad for products claiming weight loss of five pounds in one week with little or no exercise! But I can top that! Just contract what I have, that will do the trick. I have, however, maintained my exercising regimen, not for weight loss but to keep my strength up. Becah continues her healthy eating (pesto and pita bread, pear and avocado salad, eggplant) and I just sit and watch.

Part 22

Part 22 Eggs and Ensure


I appreciate weekends even more now. Forget about a break from the office. Now it is a reprieve from the needles and the masks and the medical staff and the news on TV and the waiting in rooms filled with sad people. Today is also the first bright, sunny day in a while. All I can eat, though, are eggs, as the yoghurt and potatoes are stinging the sensors on the sides of my tongue and I am forced to give up on them. Despite what should be better conditions in general, I am frustrated and depressed. I question why this has happened to me. This is my third successive day to be seriously struggling with my condition. I have endured enough days with this that the reality is settling in like an uninvited guest. Becah and the kids have gone to the gym, then shopping for groceries, then off to a baby shower. I try to rest, attempting to position my g-tube so it won’t leak all over me. I walk outside in exasperation, tired of being an invalid and a complainer. That evening before bed, my youngest, Brooke, reads me a nursery rhyme. Becah tube feeds me because of my difficulty holding the tube and pouring in the Ensure, which along with Boost is becoming my new source of nourishment. Before I fall asleep I try to distract myself watching Steve McQueen in “Bullitt”, wishing I could race around the streets of San Francisco like an agent, with no tube dangling from my stomach.

Although I sleep fairly well, I awake with a dry and sore mouth. Before breakfast of two eggs, a waffle, and hot tea (no small accomplishment), I play Candyland with the kids. Everyone except me is soon off to church. A nurse calls me from Kingwood and informs me that Friday’s blood cultures showed infection. This and I am still upset about the tube. Tomorrow, though, I will meet with a gastro specialist that my physician feels can correct the problem. At night I watch the Who perform during the Super Bowl while the children perform their own halftime show for GG, who has come over that day to serve as combination nurse for me and housekeeper. Brooke is streaking naked round the house munching on pistachios while I am finding that neither the broccoli/rice combination or potatoes are working for me. Everyone else breaks into an impromptu chorus of “When the Saints Go Marching In” in encouragement of what will be New Orleans’ long awaited triumph over Indianapolis.

Part 21 People Like Us/drip drip drip...

Part 21 People like us/drip, drip, drip


The next morning is drizzly; the weather map shows a solid mass of rain covering the entire state. Nevertheless, I am upbeat this morning (I hope it’s not just the steroid injection I got yesterday). Driving to Kingwood for my seventh radiation treatment, I listen to an old Mamas and Papas CD called “People Like Us”. In the chemo room waiting for my daily shot I watch as CNN tells me about a huge Toyota auto recall because the autos are inexplicably accelerating without warning. A man receiving chemotherapy jokes about being a sex slave as a child. I really have to listen to all these things while I wait? Drip, drip, drip goes the chemo through the many IVs…I’m reading Joel Osteen, who informs me in his book title “It’s Your Time”. I also flip through another book called “Saltwater Buddha” which tells me that I should stop making assumptions about how life should be but rather accept what is. Everything changes. Life comes into being, then passes away. There is a passiveness to this that bothers me, but I choose to reframe this into watching the bad evolve into good. I also need a more active life, with less accepting and more doing.

A storm introduces the next day, and subsequently, more drizzle. My feeding tube is leaking and seems to have stopped working, so I must see Dr. Br- ,who installed it, as soon as my treatment is over, or I will waste away (achieving victory over this disease the hard way). At the treatment center I hear even more depressing news about runaway cars, Michael Jackson’ doctor possibly being indicted for manslaughter, and various people being shot around town. After treatment, I travel to see Dr. Br-, who abruptly yanks my tube out and replaces it. I am freaked out and instantly relieved, as he smiles brightly through the process. My sleep that night is disturbed by dry mouth, chills, and my new tube briefly leaking again. This combination is taking its toll on me. Only when Becah prays for a friend who is scheduled for liver surgery this morning for one of his many longstanding medical ailments do I regain some perspective that humanity involves more than just me.

Part 20 31 Degrees, or shake shake shake

It is Saturday and the morning is chilly. Bree goes to a play with her next door neighbor. CC and GG come over in the afternoon to take the kids to a birthday party, then back to spend the night with GG. Becah has gone for a night at a hotel with her girlfriends, a chance to get away for a breather from all this. I am on a childhood kick, I guess, as I watch two of the old “Prisoner” series episodes then call my longtime friend Mike up and talk about the Beatles. He holds the phone out so I can talk to Zipper, my former cat who now resides with Mike (who took her in after we realized she couldn’t handle living with my family). The following morning is the last day of the month. I wake up every hour and the temperature has dropped to 31. I am alone in the house and have oatmeal and waffles. I feel better, though. I put on clothes to wash as Cat Stevens’ “Numbers” CD plays on my stereo. I fortify my mind reading Joel Osteen, then my body by lifting weights, jogging, and doing yoga, then I nurture my artistic streak by checking on some chords on my keyboard for a song I am writing. I put on another CD – the Beatles remixed “Love” album, that at times works but also seems disjointed (like me?). Everyone is back by four, my reverie is ended. At night we do baths, then Becah reads to Bree while I read nursery rhymes, “Barnyard Dance”, and “Goodnight Moon” to Brooke. Before turning in, I fear my feeding tube is somehow growing longer and uglier as it hangs from my stomach.

A new month has arrived. I carry Bree from her bed to the couch before leaving for work (she has decided that she likes to ease into her day by being carried to the couch to sleep a few more minutes before waking up to get ready for school). At the waiting room before treatment, a loud family and blaring TV make for a distressing combination. However, when I’m called back for radiation, the ladies align me quickly, and after the first attempt I am out of the session and home before I know it. I am fatigued though, with a slight queasy feel (both of which I have not really experienced much to this point). I stay home from work this afternoon, realizing that there may well be many more afternoons like this. After resting and my children returning from school, I help Bree write and illustrate her original story “Can Ice Cream Talk?”

Groundhog Day comes and I hear we are in for six more weeks of winter. Overcast, rainy weather is projected for the rest of the week. Dr. Bu- greets me good naturedly today as I wait for treatment. He works at the Kingwood center as well as at his other office, so I will periodically see him popping in to make sure that my body is handling this medical assault alright. When he leaves I resume watching a movie. Today someone has decided we need to watch a channel “for women”. I have seen movies on this channel before, and they always feature a woman being victimized by some heartless man. In this one, the attacker gets his justice when a bear comes and mauls him. (Makes getting pierced by a nurse’s needle not seem so bad!) I wait longer for treatment, since another person is running late. I am in a room which I see will usually be crowded with others who are receiving chemotherapy. I see some younger women and men as well as the more typical elderly. Many sit staring aimlessly, attached to their IV pumps, but suddenly a slim, older man dressed in western attire steps in briskly and entertains everyone with his positive banter. He acts as if he is controlling this disease, rather than being at its mercy. Which is a good thing, since I am discovering that this disease has no mercy. A nurse breezes by, handing me a small vial of medicine and asks me to shake it continuously until it no longer looks “cloudy”. She walks off to attend to another person. I have been told that if the vial is shaken clear, there will be less chance of my experiencing a sharp, throbbing sensation (like a bee sting) in my stomach upon injection. So I shake and shake and shake…

Part 19

Part 19 The bracelet and the bear

Day one of treatment. I drive Brooke to her daycare, treasuring this experience, the normality of it. Driving off, I run my fingers through my scalp and notice more falling hairs. It is a bright, sunny day, but I am apprehensive about my first treatment. Or maybe it’s the shot. I put a colorful bracelet around my wrist that the kids made for me. In the back seat is my special bear they made for me that is to be my companion for each trip to treatment. After working until 9:30, I meet Becah and we drive to Kingwood. Dr. Bu- starts everything off poorly by surprisingly informing me with the news that I will receive chemotherapy and the experimental drug Erbotux each Wednesday in conjunction with radiation. The shot comes – actually not as bad as I feared (although I was prepped with a hydrocodeine pill and was given lydocaine to numb my stomach prior to injection). I enter the radiation room, trying to ignore all the warning signs posted on the walls of how unsafe the place is to certain persons with certain conditions. The techs greet me. I show them pictures of my children and tell them they must make all this work out right for my kids’ sakes. I lie on my back and the mask is placed over my face. I close my eyes. The first treatment begins. I hear sounds to my left, slowly arching to the right. A sensation of light accompanies the sound, like the sun moving over me. My right arm is still sore from holding it rigidly in place the day before. In about 25 minutes it is over. No pain. No discomfort that I cannot handle again and again and again. But I will think about each treatment one day at a time, never looking ahead at the number “30”, only looking back when I have accumulated enough sessions to make a dent.

I remember when I jogged up the bleachers at the high school stadium as part of my workout regimen. My way of handling the ordeal was to gaze straight ahead at the step I was on, refusing to look up at how many more I had to climb. I found this to be an effective strategy, allowing me to get through a task that I might otherwise find too imposing. If it worked under those circumstances, I suppose it could work under these.

At home, I enjoy a sandwich and find that my taste buds are just about normal. Our neighbor’s little girl comes over and asks me to re-string her guitar, which I enthusiastically do. Anything to fake business as usual.

The next morning continues to be chilly and clear. I take Brooke to daycare and play “Arizona” and “Silver Bird” by Mark Lindsey, two oldies that Bree always loved hearing and expected to hear each morning on her way to daycare. Brooke also will request these two many times on later mornings. I am ruminating on my appearance as I enter Kathy’s daycare when a parent unexpectedly complements me on my looking good. Driving to Kingwood for my second radiation treatment I pop in the gift CD by Peter Noone, and am invigorated by the energy and fun of the live recording. What I feared would be only a decent record by an aging former teen star turned out to be impressive and a real treat, no easy task for Peter in my current depressed state.

At the center I am informed by the nurse that I will be here longer today, well into the afternoon, receiving the additional drug Erbotux. In fact, they may need to break the sessions up into part today and the rest tomorrow (with required monitoring by my physician). The radiation session is fairly easy, with the only hassle being the lengthy time required for positioning me on the table. Afterward, I find myself sitting in a chair while strange medicines drip through the port in my upper chest and the TV is jabbering with “Deal or No Deal”, a game show that I am oddly interested in, probably because of the NFL stars in the audience and the fact that both the main contestant and emcee Howie Mandell are slick-headed bald (and looked great!). A man sitting beside me remarks to me that he had been given the same drug that I am receiving, casually noting that it caused some acne but little else. A lady’s cell phone goes off, playing “Ode to Joy”, adding a nice calming touch to the moment.

I read Wayne Dyer’s “There’s a Spiritual Solution to Every Problem”, trying to fortify myself with religion and positive thinking to build my strength, not easy to do when Carnie Wilson is ranting on some new reality show that someone has flipped on. This followed by “Match Game 77”, remarkable only for the dubious seventies hair styles and a statement to these desperate times that find us forced to relive game shows that were lame decades ago and haven’t improved since. This is followed by “Lingo”, another game show with people looking very sci-fi and wearing sunglasses, with rapid fire commercials braking in so often that I want to scream “stop the madness!” After a one hour observation to make sure I’m okay, it is finally freedom at 4:00. After a meal of Mexican food at home I watch President Obama’s state of the union address but am distracted by my fear that I am starting to resemble Vice President Joe Biden (hair again). I read nursery rhymes and “Goodnight Moon” (one of our girls’ favorite books) to Brooke and have trouble getting to sleep due to a headache. I drift off occasionally but find myself wide awake from 2:45 to 4:00 and, giving up, simply get out of bed and walk into another room.

After work the next day I arrive for my third treatment to find the techs waiting for me, having had an earlier cancellation. In the sitting room afterward I receive more chemo, but I am managing to keep up my spirits even though it’s another 4:00 departure. The next morning I awake having had a surprisingly good sleep despite being briefly disturbed by an early morning storm. After driving Brooke to daycare I find it necessary to keep my hat on at work (despite the no hat policy – I figure they will cut me some slack on this one). Later, I watch Obama on CNN at the center while waiting for my radiation session, then receive a parting shot (literally) to improve my bone marrow strength before returning to the office. At home, a young neighbor dons my daughter’s boots and they dance around the house. The levity is short lived, though, because it is getting colder outside, my feeding tube is leaking, food is tasting strange again, more hair is falling out, and I have lost my wedding ring! I am devastated by this final strike, and I look everywhere in the house and even drive back to work, looking in my office and all over the parking lot. Finally I return home and glance on the den rug. There it is! I had been doing yoga exercises, and apparently my hands were getting so skinny that it slipped off.

What my daughter thinks of me...

Do you ever wonder what your child thinks about when they think of you? I have often wondered this. Does she think I am smart or funny or hip?

Last night my question was answered.

The Setting: My 7 year-old's bedroom. Snuggled on the beds after saying prayers.

Bree: Mom, I am writing a musical.

Me: Wow Bree, that is so creative!

Bree: There will be some talking and about every 5 to 10 minutes, the actors will break into song. You know, like High School Musical.

Me: Yes baby, that sounds great.

Bree: I am going to need you, Daddy and Brooke to play
the parts and take turns being the audience.

Me: Ok

Bree: It is about 2 "nice" girls and a "mean" girl that bothers them.

Me: Sounds good.

Bree: Mom, I am going to need you to play the "mean" girl. I have thought about it and you have the most experience of anyone in our family at YELLING because you YELL a lot.

Me: Oh ok

There you have it folks. The secret is out. This is what my daughter thinks of me.

At least she has a patience and quiet Daddy!

Part 18

Part 18 The Life and Times of G.I. John


The next day I exercise upstairs with my wife –a relaxing yoga session ironically attained after much stress and sending the kids to timeout for their misbehavior. Savasana! After this I drive to my hair stylist and shock her by asking her for the first time ever to cut my hair radically short. When I return my family is surprised – Becah loves my haircut, while Bree is unsure. Personally, I feel that I look like I had just joined the military and got sheered with an introductory cut. While the Saints tromp the Cardinals 45-14 in a playoff game, I make many trips to the mirror, trying to convince myself that I still look good while realizing I had no choice in the matter since it was all going to fall out anyway.

Later in the evening, Brooke comes down with a fever. The following Sunday morning is sunny and I feel better despite my continued erratic sleep. Becah and Bree drive to church while I stay home with Brooke, painting as we watch Joel Osteen on television. My parents come over in the afternoon. Dad is tired and, as he has for months now, repeats himself endlessly as dementia takes residence in his brain. We talk and watch football playoffs. Minnesota wins big over Arizona but the Jets upset San Diego, fulfilling my prophecy that out of the four final NFL playoff games there is always one (and only one) upset. Back at sleep that night I resume my hourly wake ups. I’m certain that I will start hallucinating due to sleep deprivation.

The next day (Monday) is a sunny day. I return from the doctor’s office energized and positive, having just received a good medical report. U2 music is cranked up on my car system, “Beautiful Day”, “Mysterious Ways”, and “The Hands That Built America”. Returning to work the next morning I get compliments about my new haircut and I find that I am losing self consciousness about it. But by 9:00 I am experiencing pain from what I will learn is my first hemorrhoid, a side effect of the treatment. The weather is warming and I return home at noon for a sandwich and a rest. Before bed that night I run my fingers through my scalp and discover more hairs falling out.

Awaking in the morning my apprehension grows about my hair loss, even as the coffee that I sip tastes good and pleases me. At work, I am greeted by a sign on my door with the words “bald is beautiful” boldly written. I joke with the staff and develop a “suspect list” that includes most of the employees and even the president of the United States. I have a productive, energetic day and stay pumped for most of it. After work at home I do yoga exercises with Becah, trying to maintain my strength. We enjoy dinner out that night, with my taste buds firing on all cylinders. At night, my almost three successive hours of sleep sets a new record of late. I have another productive day at work, interrupted by an electrical fire that is discovered in the building (oddly just prior to a scheduled fire drill), necessitating our standing outside for some time on a clear but quite cold morning. Going home for lunch, I find it essential to soak in the tub to relieve my new pain which seems to be intensifying. Finally back at work I am greeted by many well wishers, some of whom have stories of relatives and friends who were healed of similar conditions to mine. One lady offers several articles containing treatment and recovery aids. Picking up my youngest daughter from daycare is becoming a poignant part of my day, no longer any slight inconvenience that I might have formerly felt. Again, I go to sleep quite early at night.

After a pretty good night’s sleep and positive work day, Becah and I join our friends Steve and Melynda for dinner at a nice Italian restaurant. They treat everyone to a bottle of wine, but sparkling water for me, giving me a new perspective on social drinking. I share in eating several appetizers, pasta, and a dessert sampler, discovering that what should have been a delicious dinner is merely good (my taste buds to blame, not the restaurant). We leave for home in Steve’s newly purchased birthday present, a sleek black Porsche. After a cautious start, Steve gooses the accelerator and we streak down Louetta road like a bolt of lightening, me with my heart in my mouth, as he casually remarks, with regret, “maybe I should have given the money to the church instead”. He adds that, at only seven miles per gallon, he rarely even takes it out of the garage.

I go to lunch the following afternoon with my friend Mike at Pappacitos Mexican restaurant, which is enjoyable if not right on taste-wise. After that, we go to see the new Sherlock Holmes movie, where I zero in on the theme about reasoning conquering fear. I notice in the restroom mirror that my attempted moustache leaves much to be desired…

The next day is my first day back to church in several months. The assistant pastor Anne-Marie remarks “you’re like a rock star, everyone is talking that you are back”, which makes me happy. Becah and I sit at the side section, watching the choir perform on risers with a guest artist who will perform later that day in concert. After the song, our choir director Kinley passes by me, stops, and gives me a big hug. My eyes swell up with tears. I stop by to talk to some of the choir members after the service. Mike, one of the tenors volunteers the entire section to shave their heads in my support (an act that would be more meaningful if his head weren’t already slick as a bowling ball). I ask Kinley if I look military, or more like Vanilla Ice (fearing the latter may be true). We go to Jason’s Deli for a surprisingly good sandwich, then it’s to Barnes and Noble with the kids while Becah works on taxes. On the way home we pass a beggar holding a sign that simply says “two daughters”. This strikes a little too close to home, so I stop and offer him one of the three bills in my wallet. Twenty dollars is more than I am ready to part with and represents a true test of commitment to giving. For once, I actually pass.

That afternoon I enjoy a delicious meal at my parents’ house, crabmeat imperial, broccoli, and rolls, plus rice, beans and chips from nearby favorite La Hacienda restaurant. Topping it off are baked apples with vanilla ice cream. Everything but the chips and sauce (which are a bit off) tastes delicious. On TV, Indianapolis tops the New York Jets in football playoffs. After watching a little of the following game, we return home to see the Saints defeating the Vikings 31-28 in overtime (proving that if you allow five turnovers in a game the other guys will beat you every time).

Rising the next morning, I notice much thinning of hair. Starting the next week off, I return to work the next morning for a few hours before heading to Kingwood for a “trial run” of radiation therapy (which will actually be a discussion of what I am to expect in the process). In the waiting room, I endure what will become only a preview of hours of time watching CNN as I anticipate treatment. The actual radiation session consists of my lying very still in position while listening to country music pumped in overhead. The technicians inform me at the last moment (thanks a lot) that I will be given an injection prior to each treatment that aids in preserving my salivary glands. It will be “bad”, is generally given in the stomach, and can produce whelps and possibly nausea. Welcome to the real world of radiation therapy.