Monday, April 30, 2012

Part 13 & 14

Part 13 Bags In, Bags Out

Each day they bring me bags. Some are filled simply with water, some with chemo treatment, some contain magnesium to replenish what I’ve lost through the chemo treatment – an endless parade of bags. (“Are you sure that has my name on it?”) A patient sits beside me with her cell phone playing “Amazing Grace” as she reads her bible. I learn more each day about home buying and interior design from the HGTV channel. A lady is heading to the bathroom, assisted by her walker as Abe holds her IV bag (“tailgating”, as he calls it) and walks beside her. I wonder if there are “lucky chairs” to sit in, places where the sunlight enters at just the right angle, locations that might elevate my mood. I realize of course that I am responsible for elevating my own mood (but I will take all the help I can get).

A bald lady stands behind me. She had been on vacation attending a family reunion when she developed a “weird cough”. She went to the emergency room, and shortly after it was discovered that she had an abnormal growth in her esophagus. After radiation her condition was greatly improved, and she is due to end therapy by the end of this month. As she clutches her bible, she remarks, “I will be done, and He has got plans for me”. She lives in Woodville, an east Texas community, where she has attended various churches growing up. She eventually visited one that she said “flooded all over me”. She joyously claimed that she would be baptized there on the Sunday prior to her next birthday.

It’s now 3:00. The bags are depleted. Time to go home for today.

Part 14 Reality and the arctic blast

It is early in January. An arctic blast has charged into the day. The streets will be frozen by evening. At 5:00 I awaken, feeling shaky, with some circulation weirdness going on in my arms. I feel somewhat nauseous and bloated. At 6:00 I wake up again, feeling a little better after some more rest. The soft whirring of the portable pack goes on. I feel some comfort in its rhythm, but this is mixed with the anxiety whenever I move around and the rhythm changes. I have the jitters. This is the first morning I can remember waking up and accepting my reality. This is no bad dream.

I’m still contemplating Scrooge, who only had to endure one bad night of dreams to have his life transformed to joy. I remind myself that God has healed me already – this is just clean up, custodial work now. I need to believe this, and I need an invincible strategy to attack this problem. I will start off being healed and work my way backwards through the daily healing regimen.

At the medical center, I weigh in at 197 pounds, the most I’ve ever weighed in my life! It’s all water weight, but still…My blood pressure is okay at 104/60. I am besieged with TV ads about how to lose weight and start the new year off right.

Saline flush, anti-nausea meds, steroids….

I continue to feel bloated, listless – even the HGTV channel isn’t helping. A healthy looking male patient is talking optimistically about being in remission while still having “genetic triggers” that make his situation uncertain. I must keep flipping through the pages of Joel Osteen and Thich Nhat Hanh to keep spirits up and life in a better perspective. I find myself having trouble keeping up with the possible side effects of all the potions they are shooting through my veins (although it may be better that I don’t know). Abe comments that the rum and coke bag should improve my mood. Dr. Bu- drops by to further confuse and disturb me with information, options, drug prescriptions, and his accent, causing my head to swim. That plus the threat of freezing weather makes me just want to crawl into a hole. Then Becah breezes in for lunch like an angel brightening the room to sort everything out.

After Becah leaves for work, a healthy looking male patient with a pack strapped to his waist sits by me and proceeds to tell me about his three-tear stint with this, how he can’t work out and how bad his skin condition has been – just what I don’t need to hear. I wonder what I do with all this information, what to absorb and what to toss out when it brings you down.

That night at home I experience a tightness in my chest that I am hoping is just hunger pangs. I am watching the Texas/Alabama football game in brief segments in between groaning and generally feeling bad. I am unable to eat the vegetable soup I made that seemed a good idea when I was making it. My family returns from dinner at a Mexican restaurant and for a brief time I am hungry and manage to eat some beans and rice from their to-go box. I try sleeping early, but I awake every hour or so. Snippets of songs pass through my head which I don’t want to think about. I fear that when I hear them again in the future they will trigger miserable feelings.

Finally I doze off, minutes before the alarm jars me back into reality. Soon Bree is complaining that her jeans are too tight, and in-laws CC and GG go to work reeling her in. Later Brooke joins Bree for a chorus of “Hokey Pokey” and the day rolls on. It is 22 degrees outside, but I hardly notice. I am already numb.

We travel to Italy on the HGTV channel. A Laughing Cow cheese ad asked “have you laughed today?”

(This isn’t happening to me)
(This isn’t happening to me)

Sunday, April 29, 2012


I am thankful for many things these days. The health of my family is always at the forefront of my thanks. The pictures below showcase why I am thankful so beautifully, I believe. Enjoy them. Love, Becah

My slugger

Coach John

My Bat Girl

My ability, due to the above mentioned persons, to be a softball mommy!



Part 11 & 12

Part 11 1-800-BAD DRUG and who is steering this ship?

I see a TV ad about the drug Paxil contributing to birth complications. The announcer screams “call 1-800-BAD DRUG if you have taken this drug!” Imagine, if someone is freaked out by this one drug, what about all the stuff they are pumping into me? The program then continues, people struggling to afford their new home in the Bahamas with the gorgeous room with a view. Ah, the nice dilemmas of life…now I must create my own room with a view right here. I have so much less to work with.

A man joked with one of the nurses, Leanne, as she was changing his IV, that she was the bartender. Not missing a beat, Anna the charge nurse, seated behind the nurses’ station with her back to us, corrected him, saying “I’m the bartender. She’s the waitress”. I am getting to know the staff now after a few days of being here. Anna and Abe are both veterans. But Leanne and Christy, an attractive former receptionist who went back to school for her RN degree, have only worked in this facility for one year. Great, I’m being cared for in part by interns. And trust me, now is the time for professionals only. A lady beside me remarks, “what we won’t do to stay alive”. A discussion ensues about health care. I am unsettled by Anna’s comment “a lot of doctors and nurses are going to retire because they will not do substandard care. It all depends upon what Obama does”. The conversation morphs into a discussion of job layoffs, state taxes… and life goes on. Abe displays to a patient the last available portable chemo pack for overnight therapy – it is pink. Mary is a patient sitting next to me. She tells me that she had an inherited condition that had been misdiagnosed for seven years and that has left her with little time to live. She states that when she walks her feet hurt and she feels like she walks on glass, and that she also suffers from chronic fatigue. Mary was referred to Dr. Bu-, who diagnosed her malady, and although she appeared to be depressed, his face lit up as he exclaimed, “why aren’t you celebrating? I’m going to get you cured!” Mary now sings his praises (“he’s wonderful…he saved my life”). But she worries that if some of the new proposed health care plans are implemented that Dr. Bu- and his physician brother will quit working. Mary laments, “he has to stay to keep me alive”.

I continue to ask the nurse each time if the bag they bring me is mine…I overhear, “he just lost 65 pounds”…a patient walks out, waiving, and saying “bye, see you tomorrow”…my wife is checking emails to see who is praying for me”…

Part 12 Bulletproof youth/the other side of the window

It’s tough watching young people walk by outside. Two attractive young ladies are passing by, one smoking. Their eyes don’t gaze into this place. They have other concerns. Who said what about whom at work. Will that guy at the office ask me out. When you are young, though, no physical ailments will touch you. Our maladies inside this room don’t exist to them. I have to push back the remembrances of when I was that age and on that side of the window. It’s not easy being here today, in this place. I don’t belong here. Nobody belongs here. But that doesn’t change anything. I am no longer bulletproof.

Saturday, April 28, 2012

Part 8 Becoming one with the chemo room and observations about nurses

Sitting in the treatment room, I observe that the tone is generally quiet, occasionally even upbeat. A lady sitting behind me, though, is having a not so good morning, complaining about something. I think about how I could best function in this mess. I could be a light, not only improving my mood, but elevating the emotions of others. It matters to more than just me.

Anna is an older, gray haired, no nonsense nurse. All business. She has been in this facility for nine years. She knows her stuff and she pulls no punches. She tells me in no uncertain terms that all of my hair will fall out, and once it starts, it will go rapidly. Abe is a feisty male Hispanic nurse, upbeat and energetic with a sense of humor. I ask him if the overnight drip bag issued to me will ease the effects of the meds. He replies, “it’s like if I give you a bottle of Jack Daniels and tell you to drink it all right now – it will mess you up. Better if you drink shot after shot over time…” There is another female nurse who appears to be a combination of knowledge and tact, with a positive mood (always appreciate one of those around). Then there is a “babe” nurse who is quiet, serious, and smiles occasionally. I wonder, “is she a good nurse? The way she looks, does it matter, as long as there are a few skilled ones around?” I ask each of them, “are you sure this is my medicine, not someone else’s?” Obsessive, maybe. Safe? For sure.

…and HGTV goes on…

Part 9 Living in the present moment/ when to get sick/ my greatest challenge

Thich Nhat Hanh is a Vietnamese Buddhist monk and author of many books. He is a wonderful human being who should be president of the world. He endorses the concept that we only have the present moment in which to live. We squander our lives obsessing about yesterday and tomorrow when we only have today. He encourages simply breathing in and then out, meditating on our thoughts. He encourages filling our bodies with positive substances and thoughts. I find that his teachings have much in common with the Christian doctrine. I am concentrating on making the best of this moment no matter what.

If you must get sick, don’t do it crossing from the end of one calendar year into the beginning of the new year. Not only does it really bring the holidays down, but when the new year arrives, you have to fill out all new paperwork for everyone! (I observe that you also do not have the luxury of your insurance company picking up the entire tab; it is now your dime for awhile). It’s funny that in an age where we worry that anyone can access our personal information we have to complete hundreds of forms that give permission to give this information to everyone in the universe! I discover my greatest challenge in life – embracing beaurocracy!

Part 10 Treatment options/Lose weight fast!

Writing my thoughts and observations during this period is gratifying. It helps me focus on something positive in order to hopefully have something to share with others later. Besides, I find that time races by when I write – reason enough. I am told to minimize my exercising for the next few days, which, my being an exercise fanatic, will cramp my style. I glance at an ad on TV. Carbonite, a computer backup system for $55, “because your life is on your computer”. If only I had a backup system for my physical life for only $55! I practice a mantra, saying that God has already healed me and is protecting me. A lady with a positive pet scan walks in, remarking, “things are looking up” and challenging Abe. “Are you ready for a round? Come on, let’s wrestle!” I am given more papers with the heading “treatment options”. As you see this term you feel inundated with pages of papers to sign warning you of all the possible side effects. I want to believe that I am getting the best treatment plan, but I am dizzy trying to wrap my mind around all this when I simply want this intruder out of my body as soon as possible. Another TV ad about how to lose 30 pounds fast without changing your diet! (Call now for a free trial!). A patient walks by with a Daytona Beach t-shirt – Becah says when all this is over we will run to Florida to celebrate with a week at the beach.

The cost of changing the packs going into my IV… steroids, antinausea medicines, then comes the real item. I wonder when the nurses come around. Should they tell me everything, or just administer meds business as usual. How many side effects are psychosomatic? Breathe in, breathe out… I complain to Abe, “just because they think I’m in good health doesn’t mean they have to hit me so hard with all this stuff”. An older man comes in with the pain in his mouth. Is his a case similar to mine? He seems to be dealing with all this alright. By lunch time, all the seats that day are full, causing me some distress at losing my privacy and some semblance of quiet. HGTV touts a show called “Property Virgins”, about first time home buyers. I realize that I am a novice to the chemo room, also a virgin. Abe is kidding a man who is sitting in another man’s “reserved” seat (“and he’s a boxer…you gonna take him on?”) It feels strange to kid around in here, but I really have no blueprint for etiquette in this place. I must experiment, and hold on to what feels right. None of this is a joke, but you must remove the intruder’s power. I will need to make this my daily job.

Friday, April 27, 2012

Part 6 & 7

Part 6 Vanity tumbles, and observations on the bald look

One evening soon after starting treatments, I notice the bandage on my neck is oozing some substance compliments of the surgery two weeks ago. I had replaced the bandage with a flesh colored band-aid (which looked much better), but now have to return to the bandage. My neck is improving, though, with much less swelling. I am obsessing, however, about hair loss. I ask my oldest daughter Breanna if she would mind if daddy were bald. She makes a face, replies that she wouldn’t like it, and walks away. Later she returns, smiles, and I feel somewhat better.

I soon become an ardent observer of shaved heads. Athletes on TV, commenting on the game during halftime. They smack of cool and hip – bulked up physiques, sharp suits. (ex-football star Shannon Sharpe indeed!) An African-American news commentator on CNN also looks impressive. In contrast, though, are the patients in the waiting room. Pale, skinny, hairless, hunched over and staring blankly. Fragile shadows of people. Nothing hip about that, just a sickly neon sign saying “look at me, don’t I look strange and pitiable?”

After school one day, Bree comes up to hug me but I pull away, fearful that she would press against my portable chemo pack. She leaves, tearful. When she returns, I try to explain, but she huffs and angrily walks away again. Becah enters and acts as an intermediary. I am eventually able to talk to my daughter, but it underscores her difficulty adjusting to all this, her awareness of my condition, her fears of change and her need for security and predictability at home.

Part 7 The first days of everything is different/Of pills and patience

On the night of the Orange Bowl, Kool and the Gang are shouting “Celebrate” during the halftime show. Now this is uplifting! Of course, it helps that I have always been one who feels more optimistic at night. Ever since the troubled teen years, I have always found it easier to dream during evening time of how life would work out better. It was always the cold light of day that would shake you back to reality. Despite these tendencies, I actually wake up early the next morning feeling calmer despite not sleeping well all night. I sleep on the couch now (as I will also on successive nights) because it is a shorter distance to the floor and therefore less likely that I will jump up and disconnect the chemo pump that had been going all night. I also feel fortified by having two registered nurses that are staying in my home overnight (being my wife’s mother and her grandmother).

A few hours later I find myself anxiously pacing in the doctor’s office as my pump is beeping. Do I disconnect it now? Is it running out of fluid and pumping air into me? Should I initiate panic mode? I look around at all the others who have arrived before me. They have a right to treatment too, and they got here first. But let me go in the room now! Sad that I have been reduced to this…

As I wait, there are also thoughts running through my mind regarding which pills to take and when to take them. I never feel comfortable with pills, and how they may adversely affect my one and only body. Even in the halcyon days of college, when someone approached me and said, “here, try this blue pill” I would back off. What is it? Where did you get it? How do you know what it will do? Now I was having the same concerns, no less because these are “professionals” doling out the pills. I’ve seen the tiny print on the back pages of ads in magazines. Scary. There are substances running through my veins (chemo, itself a poison ravaging the disease and my body which it inhabits) and I am ingesting prescribed pills. Some you take one hour before food, some with meals only, etc. How will all this affect my treatment? One doctor tells me not to take my biotin supplement (which I was taking to improve my skin), but multivitamins are deemed okay. When they give me meds that generate adverse secondary problems, they simply prescribe others that will counter those effects. (“One pill makes you larger, and one pill makes you small”). Straight out of Alice in Wonderland.

Thursday, April 26, 2012

Part 5

Part 5 The Chemo Room

I awake to a cold, beautiful morning. However, I am restricted from having my coffee (or even a glass of water, anything) prior to surgery to have my port-o-cath put in. Becah and I arrive at the Spring Surgery Center, where we are greeted with a smile and an outstretched hand waiting for my credit card and insurance card. The television in the waiting room informs me that plank exercises are better than crunches and that hand weights burn as many calories as a jogging. Soon I am escorted into the surgery area and am poked with a needle for the first of what will be countless IVs. The cool feeling running through my veins is, according to the nurse, a sign that all is well. I hate needles, especially when stuck in me, and I turn my head away each time (I can’t even watch someone getting a shot on a TV show). Dr. Br- comes in and discusses the procedure of placing a port below my shoulder, assuring me that there is only a one in one hundred chance of my lung collapsing in the process. Fortunately, the odds stay in my favor.

Riding over to the center where I would receive my chemotherapy, I feel the uneasiness of jumping right into this whole thing. I bring a smoothie to drink and take a seat by a window, where the sun streams through and lightens my mood a bit. I feel a little better, either due to there being fewer people in the room that day or simply from my being more familiar with the room. Then the big dilemma. What TV channel to watch? I can leave it on CNN, for a barrage of bad news. Or a talk show reviewing a book that proposes that lightly touching a person’s upper arm leads to a 30% increase in likelihood that the person will assist you on a project. Talk shows get so quickly boring, though. My other choice seemed to be HGTV, which at least is more upbeat than the news. I can lose myself in the trivial woes of the rich (whether to leave one’s Sanibel home for a residence in Cabo). If only I could have my own private room with a remote to change channels, volume, or just turn it off and read. Ah, “Dance with Juliette” on the program “Cardio Ballroom”, now that sounds exciting!

I’ve been told about a phenomenon called “chemo brain” where persons get increasingly forgetful during therapy. Now that’s what I need, an excuse!

A 19-year old young lady enters the room for treatment, greeted with “you’re too young to be here” from a nurse, a harsh reminder that this brutal disease will go after anyone, not just the older, more vulnerable crowd. I am determined though to stay positive and fortify my own experience with positive thoughts, prayers, and deep breaths. I also find that the enthusiasm of minister/author Joel Osteen and the calmly powerful wisdom and determination of Vietnamese Buddhist monk/activist/author Thich Nhat Hanh make a powerful combination. I also discover after sipping on my smoothie for one hour that I am getting a lot of mileage off that meal.

My moods, however, are shifting. I fall asleep and awake feeling somewhat grouchy and sad, and cold, but later after drifting off look out at the sunshine and feel more upbeat. I feel a soreness in my stomach from the newly inserted gastro-intestinal tube (don’t cough!) that will become both my friend and tormentor.

I begin to tune in more to the sounds in my environment. One patient complains about the rising cost of Luby’s Luann platter after the restaurant chain was bought by the Pappas chain. I hear people on TV remarking about the importance of effectively color splashing their walls. Valerie Bertonelli talks during a commercial about losing 20 pounds on her Jenny Craig diet. Why am I not concerned about these things now?

My wife attempts to fatten me by serving pasta, pizza, salad, and ice cream and cake for dessert at night. She probably does not want to look at me 10 to 20 pounds thinner (I would be a walking scarecrow).

The next morning during my chemo treatment Becah’s cell phone is overflowing with prayers and well wishes in what amounts to a rallying of a religious army intent on demolishing their enemy. The intensity of support is almost palpable, and I truly feel stronger with every soldier that enlists.

I find myself writing a journal, attempting to stay more focused on something other than just wallowing in my plight when not indulging in post-anesthesia sleep. Amazingly, time rushes by.

I should note that I am not enduring all this alone. I have my “luv ya bear” (my teddy bear dressed in Houston Texans jersey) at my side. I squeeze the feet occasionally, hearing “I love you” messages from each of my family members. Initially feeling the need to preserve my macho (it is a teddy bear, for crying out loud, though he does wear a football jersey) I explain the bear’s purpose to the staff, then decide that no explanation is necessary.

Wednesday, April 25, 2012

name changes

Pleas note that the names of all professionals used in this blog have been changed from the original names.

Part 4 I Don’t Belong Here

On January 4 I go to my first doctor’s appointment prior to starting treatment. Sitting for one and one-half hours in a waiting room until Dr. Bu- can make it in is a dismal way to begin. He finally arrives, smiling, seeming more upbeat and optimistic today (but he is talking rapidly and is difficult to understand). When he leaves, I actually feel more unsure than before he arrived. I walk into the “chemo room” – looking around I see chair after reclining chair with IV stands next to each. I struggle to maintain any optimism that is left in me. I take my seat and wait to be hooked up to the first of my combo of drugs that have been designed by M.D. Anderson Hospital as being the most effective drug treatment plan. The home and gardening channel is an innocuous distraction (actually, a welcomed one from the perpetual dismal CNN commentary going on in the entrance waiting room). A crowd of mostly older faces fills the room, people with frail bodies sitting in recliners with IVs running from their arms. My mind is screaming “I don’t belong here, I’m not like them!” (but the voice inside my head says, “yes you are”).

One man with curly hair seems grumpy, while another woman who wears a scarf to cover her bald head is cheerful and laughs frequently. Another older man wearing a hat leans far back in his chair, complaining to his surrounding family members that he does not feel like eating. He sneezes loudly and the chair lunges back almost to the floor, after which he laughs and says he feels much better.

I am soon visited by the head nurse, Annabel, a tall, stoic figure with short cropped gray hair who rattles off my medication regimen and possible side effects from chemotherapy. I sit dazed and overwhelmed by it all, barely comprehending half of what she is saying. Somewhere in the speech I hear something about one of the three drugs causing all of my hair to fall out in just three weeks time, to me the most disturbing of any of the news I receive. I will perseverate on this prediction for days thereafter.

After 16 days off for the Christmas holidays (which are radically unlike any holidays I have ever experienced) I return to work. I awake that morning at 4:00, unable to get back to sleep. As soon as I open the door to walk down the hall, I see the diagnostician Lauren and blurt out my diagnosis. She tears up slightly and told me about a relative of hers who has recently been given a similar diagnosis. I tell various others as I enter my office. A secretary rushes into my office, lays her hands on my neck, and prays for healing. I check emails and find reassuring statements (“God will help”, “prayer bombs will be arriving at 10:00 tonight”). I remember a recent statement from Joel Osteen (“I wear the breastplate of God, what can hurt me?”), and feel supported by these words.

A girl is sitting outside my office waiting to see a principal for wearing ripped jeans to school. I hear her claim that they spontaneously ripped on her way to school. I can’t help but laugh along with the secretaries. I relish the lightness of the moment and the realization that some things don’t change. Becah and I had discussed the importance of maintaining consistency during this time of incredible change.

I have been cutting my daughters more slack at home now, trying to show more patience and love. Do I still discipline them? And how do I do this without seeming too harsh?
Becah has been working hard today – running the kids around, looking after me, handling phone calls and emails – this will undoubtedly take its toll on loved ones. I long to just leave for a few months, living in a monastery high in the mountains, being treated by nurses or angels, as monks pass by chanting incantations. How wonderful would this be! In between treatments I could read, exercise, compose music on my keyboard. When it was all over, I could come back and be with my family. They wouldn’t see me suffer and physically change. But then I wouldn’t receive the ongoing family support. Where do I find this place? (And is it covered by my insurance plan?)

I am thinking of Scrooge. He suffers but is transformed all following just one night of scary dreams. I will have to endure this madness for months. Where is Tiny Tim, all healed, saying, “God bless us, everyone”.

Tuesday, April 24, 2012

Transitions and New Year's

Part 3, Transitions and New Year's

Entering into the new year brings a whole new dimension to the idea of “new year’s resolutions”, as well as dramatic clarity as to what must be overcome. There are days of hope and strength interspersed with hopelessness and tears, often brought on by thoughts of my children. A look, a wave, a “hi daddy” – just the name “daddy” can bring the tears.

New Year’s Eve. I’ve never been a big celebrator of that night anyway. Maybe if it were an opening act for Christmas, instead of a poor follow up for the best possible holiday. The night is often just an excuse for small clubs to charge a cover and for restaurants to rake in the money. I like fireworks, but more at a distance. Too many experiences as a boy watching my neighborhood friends running and crying after accidentally stepping on firecrackers or watching older teens crawling across the grass like soldiers in combat, tossing fireworks like grenades at each other. So instead, I lie on the couch and watch the nighttime explosions. Prior to that, I walked across the street to have snacks at a neighbor’s house, coming and going between houses. I am confident for short periods of time only; most of the time I am rethinking of alcohol as a possible contributor to my condition and how I would be training myself to get out of that habit. Starting on New Year’s Eve of all times. I have recently started drinking hot tea to take the chill off, so I guess now it will be “tea time”.

On New Year’s Day we go to Becah’s mother’s house for what is to be an intimate party. As the day progresses, more people enter, including those who are strangers to me. I am occasionally comforted by their condolences but more frequently unsettled by being the recipient of this negative attention. One visitor is a close family friend; her being there and cheering for LSU against Penn State in a close game helps temporarily divert me from my sadness. When family leaves, though, the reality of my condition settles in like a rainstorm.

The following Saturday morning at home I feel a lessening of my tensions regarding my kids’ behavior. I appreciate just being around them now, cherishing that privilege. When you view your children from a new perspective, the little aggravations become just what they are, very small.

In the late afternoon I reluctantly accompany my wife to a neighbor’s open house, an event made easier to attend by its being only two houses down (I can wander out the door and return home in a few steps if needed). It is chilly, with the kids inside having a tea party and the moms chatting inside while the dads hang out in the back outside by the grill watching a football game as the host flips burgers. The next-door neighbor’s daughter drops by, home from college, looking bright and attractive, talking about learning to surf at her Christmas vacation in Hawaii. Sam, another neighbor, has been taking out more time for family activities and trying to strengthen his marriage. After some socializing, I walk back home for some private time to reflect.

Sunday morning. The first Sunday of the new decade and communion Sunday to boot. How can I play coward and stay home? But I can’t face the choir. I can’t sit with them and try to perform. But if I sit to the side, will they walk over to me during the passing of the peace? Instead, I opt for the contemporary service. We arrive minutes before the service, so I only have to encounter a few friends (most of whom come to Becah anyway and offer condolences). I tear up a few times, but the stand up/up tempo atmosphere helps.

Back at home, I watch the Texans play the Patriots and try to grasp a winning season and possibly get in the playoffs. Becah and my daughters Breanna and Brooke go to the mall for a while and I work out, trying to keep up my strength and release some endorphins to lighten my mood. They return with a stuffed bear built especially for me (with “I love you” recorded by each family member, activated by squeezing the bear’s foot). My oldest daughter Bree sits and watches the game with me, remembering how the Texans play well in the first half but poorly in the second (they will prove us wrong, though, winning the game strongly in the second half).

I see that life will go on regardless of my predicament. The world still turns, the wind blows, the sun and moon still rise.

Monday, April 23, 2012

Envying Job

Part 2, Meet the Professionals

The 29th of December is a very cold, overcast day, perfectly matching the gloom that has settled inside me as we drive to Kingwood for my PET scan. The nurse that initially meets with me is very kind, but I have not have a scan like that before and am quite apprehensive. I experience some feelings of claustrophobia, likely the result of a tonsillectomy when I was very young that required a breathing mask to be placed over my head. My mother told me that as a youth at Halloween I would pull my mask back on top of my head rather than wearing it over my face, so much was my discomfort at having my face covered. Throughout the scan I remain with closed eyes, mentally singing Christmas songs and saying mantras to comfort myself.

Following this test, I meet my oncologist, Dr. Bu- , an Indian man with a thin, dark, trimmed beard and glasses. His manner is straightforward, perhaps too much. He assures me the disease is treatable (“yes, of course, otherwise I wouldn’t bother”). He chides me for my disclosure that I regularly consume alcohol (abruptly stating “you need to stop that”). At that moment, though, I decide he is right. I don’t believe that I drink enough to cause pathology, but if there is even a remote possibility, I will keep that “poison” out of my system.

Following my meeting with Dr. Bu-., I meet with an oncological radiologist, Dr. N-., a tall, attractive, youthful brunette, who wears long high heeled boots and saunters into the waiting room like she was on a catwalk. When my wife remarks how pretty she is, Dr. N- turns her head slightly and giggles briefly like a schoolgirl. Dr. N- draws some sketches of the neck (“I’m somewhat of an artist”, she says) and indicates the location of the disease as she describes the type of pathology. She gives me some harsh news about how I would feel physically during and after the proposed seven weeks of radiation that I am being prescribed, as well as the name and phone number of another person who has received a similar treatment as I would who I could call and from whom I could receive some support. Before she leaves, she touches me lightly and says “this time next year, it will all be just a distant memory”.

Driving home with Becah my feelings of depression intensify. I had hoped for a PET scan that miraculously showed nothing abnormal, or at least for a brief, painless treatment plan (how about a couple of pills I could just pop?). In the next few days I will wish for a phone call from the imaging center, with someone telling me that it has all been just a horrible mistake.

Sunday, April 22, 2012

“Now a word came stealing to me, my ear received the whisper of it. Amid thoughts from visions of the night, when sleep falls on mortals, dread came upon me, and trembling, which made my bones shake.” (Job 4: 12-14)

“O that my vexation were weighed, and all my calamity laid in the balances! For then it would be heavier than the sand of the sea.” (Job: 6: 2-3)


John Butler

Intro/One Saturday morning

One Saturday morning in August, 2009, I lazily make my way to the kitchen for a cup of coffee to drink as the kids eat bowls of cereal. I listen to them talking, acting silly, picking at each other – the usual table stuff. Leaning forward, I rest my neck on my hands. Suddenly I am aware of a swollen gland on the left side of my neck. It isn’t sore, but here it is. I rub it. No pain. I get up and go to the bathroom to look more closely. It is small, almost unnoticeable. I return to the kitchen table and tell my wife, Becah. She observes the gland and massages it. She, like me, is puzzled. We decide I should call the doctor and have him check it out. Probably an antibiotic would be all that would be needed. I am concerned, but manage to put it out of my mind.

The following Monday I call and set up an appointment with my doctor. This would be the first of many appointments over the next few months, as I am referred from one specialist to another to try to determine which antibiotic will make the swelling disappear. I am a school psychologist, and as I drive to schools at the onset of a fresh new year, I find myself frequently looking in the mirror at the swollen gland, imagining that on some days it is actually shrinking. I try to distract myself regularly by playing CDs loudly and singing along. My wishful thinking diagnosis is mononucleosis (that would explain the swelling in the neck and fatigue that I had recently been experiencing).

Part 1 There Must Be Some Mistake/Merry Christmas

On December 21, I check into a suburban surgery center. I am calm and comfortable at the center, as I have gone there in the past for lithotripsy procedures for kidney stones. My otolaryngologist, Dr. M -, is simply removing the infected area in the lymph gland, biopsying the results, and reviewing them with me at his office in a few days. It will be a brief surgical procedure and I will be home by noon.

Two days later Becah and I walk into Dr. M’s office. I am fairly upbeat, expecting a “hey, we just cleaned a bunch of bacteria out. Take two advil and call me in the morning if you have any complications”. Instead, the doctor walks in and with a solemn expression and quiet voice says, “we examined it and found that it was cancerous. I’m so sorry.”

I hear little after that. “Chemo”, “radiation”, “contact your doctors”. Isolated words. I am too much in shock to make sense out of this unreal situation, much less able to formulate a response. Becah reviews with me later that his suggestion would be a comprehensive, aggressive program involving three different types of chemotherapy followed by radiation treatment. Of course, the other specialists would have to devise the specifics of the actual plan.

That evening, I go through intense feelings of denial (there must be a mistake, they brought me the wrong records). I think of how unfair this all is, merely two days before Christmas. In following days I will even entertain the idea that it is all a conspiracy conceived by physicians acting in concert to make money off an innocent person. Maybe I should get a second opinion. How about a third? Returning to reality, I wonder who to tell about my condition. Only certain close friends? Everyone? No one? How do you keep such a thing secret? I want support and prayers from others, but I don’t want their pity. I think of my own behavior around those I know who have been diagnosed with serious illnesses, my tendencies to not say enough. Out of uncertainties of what to say, I often did not say anything. Do people appreciate your discretion, leaving them to their own and not calling attention to their plight? Or are they saddened that you do not even acknowledge their condition and how they are feeling? How would I want to be treated? Oddly, I do not know. In later days I would be comforted by well wishes from others but at times distressed by the constant barrages of “how are you feeling?”

I have been singing in the church choir for several years now. I never sang in a choir in my youth, preferring to play drums or guitar in bands and sing rock music. But I learned to enjoy the musical challenges of ensemble singing, and found it to be a good way to serve others in church as well as improving my musical skills. On Christmas Eve 2009, however, there is simply no way I can sing without choking up at the thought of my condition. I awake very early that morning, questioning the reality of my diagnosis, only to be faced with the truth. Our family attends the children’s service, where I am able to stand often and be a little more active. I avoid glances of others, tear up frequently, and offer only brief thanks when someone approaches me with condolences. Following church, my niece and her daughter come over to our house. Staying up talking with family members helps temporarily distance me from the pain. After they leave, I begin watching the 1951 version of “Scrooge”, “required “ holiday fare for me, but I stop after a short while, either too tired or too depressed to stay up.

We awake early as usual on Christmas morning, and I videotape the kids opening their presents. We watch the rest of “Scrooge”, in portions, and I cry at the end (like always). I get a keyboard for my big present, adding to my collection of musical instruments, and hope to expand my songwriting skills. But this holiday I can not bring myself to be musically creative. I wonder if any music I write during this time will bring negative associations in the future. Even listening to favorite songs during hard times can backfire and make you not want to listen to them when you feel better.

Later that day we go to Becah’s mom’s house. Surrounded by immediate family and friends, I feel a little better. I don’t talk much, but I know they are available if I wanted to. My mother is a two time survivor and has been disease free for over 30 years, a good source of inspiration. Driving back to our house that night our kids fall asleep in the car. What a very strange holiday.

Saturday, April 21, 2012

Envying Job.

Hi Friends, We have some excited news. Coming soon to a blog near you, an excerpt from John Butler's (hot, new writer on the scene) latest book, "Envying Job". "Envying Job" promises to be an interesting, griping, exciting, heart warming, and reflective view of John's cancer journey. Please stay tuned for the first part of the story. When it is posted, please join Butler Family Curve balls in order to be sent regular installments of John's book. We promise that you will not be disappointed. Love, The Curve balls

Sunday, April 15, 2012

There are a few "good" things about Cancer...very few but some nonetheless.

Before John was diagnosed with cancer, I thought cancer was scary but distant. Something that happened to your ex-boyfriend's mom whom you never met or your aunt that died when you were seven. These things made me sad but they mostly made me sad for the people that loved those who had passed and the way it had effected their lives but not mine.

Then cancer hit MY world and my thought about it certainly did change. I hated it. I hated the waiting and the fear. The first few weeks were the worst. Oddly enough once the treatment started, I felt better. I relaxed some. I knew the poison was killing the poison. At home, we begun to enjoy that John was home more and since we did not really feel like going out much, we had some great family times together. John and I spent hours at appointments just holding hands and talking. These were some of the first "good" things that cancer gave us.

Throughout this journey, there have been many, many, too many scary, horrible, frightening things that have happened BUT there have been good times and more often than not just normal times.

Now I come to the reason for this post...the "good" things. Last Saturday, we went with my dad and step-mom to a fish fry. One of the activities for the kids was a craft area with paper grocery bags and markers. Our daughters loved this activity. They made paper bag heads to bring home. Once back at my dad's house, Bree continued to add to her "head" giving it hair, a bow, red lips and eye lashes. She also made a paper bag dress to wear with her "head". Once we returned home, she kept going making two more "heads" and two more outfits. These were all made so that the three of us girls could put on a "Baggles" play. These were to be our costumes. Wednesday night, while John was a choir, Bree insisted on a dress rehearsal. We had to take advantage of the fact that our audience was gone.

We were just about to start the rehearsal, when Bree exclaimed, "Oh no, I forgot to put hair on Momma's!"

To which Brooke replied, "No problem, Momma can just be a person with cancer in the play!"

Bree said," Brooke that is a great idea" then she just moved on. She just moved on!!!

This happened because my children have experienced cancer for both the good and the bad. John is alive and well. I am so grateful that for my children cancer has had a happy ending so far. It also made me keenly aware that cancer or not, we are still a family and life goes on. My heart is heavy now for adults and children alike who have not had the happy ending. I will pray tonight that they can find the "good" in cancer, however, small it may be.

Please say and extra prayer tonight for those currently suffering the effects of cancer and their families. Also please send a special prayer to those who have lost loved ones to this very BAD disease.


Sunday, April 1, 2012

Palm Sunday

Hosanna, Hosanna, Hosanna, Hosanna!
He is coming in the name of the Lord today!

Waving the palms at church today

The Petting Zoo!

The Super Models

The Easter Egg Hunt

Happy Lenten Season!

The Butler's