Tuesday, October 23, 2012

“To every thing there is a season, and a time to every purpose under the heaven…a time to break down, and a time to build up…a time to mourn, and a time to dance.” (The book of Ecclesiastes)

Epilogue October 20, 2012

To everything….

I dream some nights that I can play guitar again. In the dream I can form chords effortlessly with my left hand as I strum or pick with my right. My left hand bends confidently around the neck, moving up and down playing progressions like it once did. I am surprised that I am able to do this, and the excitement builds as the song continues. Suddenly I am awake, and my fingers on my left hand are stiff. I bend them slightly as I return to sleep.

I am still singing in the choir, though, and intend to do some more composing using my right hand and multi-tracking on the keyboard. I will add vocals as I did before. After I left the hospital the third time my voice was a bit raspy and inconsistent, and it was impossible for me to hit the high notes like Brian Wilson or Jon Anderson of YES. Of course, even in old times on good days with a few beers in me and my inhibitions tossed to the wind, I still had trouble hitting those notes. They’re not the professionals for nothing.

I am getting faster on the computer typing with my right hand. I have experimented with a program that allows me to speak into a microphone and watch the words appear on the computer screen. The words spring across in rapid succession. As I compose a psychological report, I read phrases like “test results suggest that Mark experiences depression and agitation with periods of withdrawal”, but what is on the page is something like “the fat lady serves artichokes in the Caribbean”. I am told I periodically have to proof the report and change a word here and there that the program misinterpreted. Yes, indeed…

I enjoy eating sandwiches again. And I don’t require two glasses of milk each meal anymore to get them down. A glass of water works fine. Big multivatimins still occasionally get stuck, though, so I chop them in half.

I now have a physical oddity – on my stomach are three belly buttons (well, one is actually closer to my side). There is the real one, plus two bogus ones left over from the feeding tubes. One of them fakes my daughters out every time because it looks just like the real thing. I am amazed though that there is not even a mark on my right side from where they pierced me to open my body to work on my insides.

I think the bills have almost stopped coming in (but the credit card is not paid off).

My mom at age 86 is trying to rid her body of the last vestiges of cancer outbreaks that after so many years of leaving her alone, struck her again suddenly when my dad was in his last days with us here. She has endured chemotherapy and radiation and sickness from these and still fights hard to stay on top. She has more courage than anyone I know.

My wife Becah expects me to do everything now with energy and enthusiasm. She endured enough of my being lying on the bed and saying “I can’t”. I love her very much, and her presence beside me through all of this means more than she will ever know.

My oldest daughter Breanna is my sports enthusiast. Softball, swimming, cheerleading, basketball. Then the cycle repeats. She is so good, too. And with her constant desire to be the center of attention, she may step on the stage and turn her singing interest into a career someday.

Brookie is only marginally interested in athletics. She loves to sing too, though, and she enjoys her ballet class. She is also my TV watching buddy, curling up with me on the couch. Although she has moved on to Disney teen sitcoms, she with very little enticement will still join me for a segment of “Lord of the Rings”.

Monday, October 22, 2012

Reflection 9 Sight effects

Medical procedures can produce a myriad of negative side effects. Chemotherapy that makes your hair fall out in accelerated time. Anesthesia that causes seizure-like body shaking that leaves you with physical abnormalities. Rapid weight loss from pneumonia that makes you resemble David Bowie during his “thin white duke” phase (even with some of the drug-pale skin pallor).

I can’t even claim that I wasn’t warned. Of course it’s difficult to focus initially when you sit in a hazy stupor caused by the piercing reality of the combination of a morbid diagnosis and a pile of consent forms with fine print that explains in detail how your very life may be in jeopardy even by the therapy designed to heal you.

It’s like the advertisements in magazines for prescription drugs to fight some emotional problem. The eye-catching ads are sometimes followed by two full pages of cautionary statements about what might happen to you if these drugs are ingested. I tend to not read these pages, choosing to believe in a more optimistic outcome. (Or, more sensibly, opt to just forget about taking the drug).

But these are the negative side effects. There are other outcomes, which I call “sight effects”. These are the positives. Like restructuring life priorities. Having a new appreciation for family. Enjoying small moments. Accepting little nuisances and frustrations for what they are and refusing to let them shape our precious time. Worrying less about what others may think of us. And living our lives more boldly.

Through the darkness we get a second chance, and then we see more clearly.

Sunday, October 21, 2012

Reflection 8 Climbing the cliffs

Roughness is relative. I have had events in my life that caused suffering, times I would never want to experience again. I have been ill on occasion – a virus, or the flu can get your attention. A kidney stone has brought tears and nausea and pain that only morphine could extinguish. But my week in the hospital following the radiation and subsequent chemo combo was physically and emotionally draining. I spent each day mostly staring at walls, aching emotionally and physically, and doing little else.

When one of my early esophageal dilations went terribly wrong, I awoke to a second much more traumatic and lengthy hospital stent, having lost movement in the entire left side of my body. I anguished through the next few days with the uncertainty of when or even if I could move normally again. The two weeks plus for that hospital trial were much worse than the prior hospitalization that I thought was so uncomfortable.

But I was totally unprepared for the surprise awaiting me on my third hospitalization, awaking from a nightmare, unable to speak, with a tube in my throat and skeletal from weight loss. I was in that facility even longer, and returned periodically for brief admissions after that because I couldn’t quite shake off the demons.

When you think you can’t handle any more, you amaze yourself when you cross over that peak and discover yourself to be a stronger person when you stand again, on the other side.

Saturday, October 20, 2012

Reflection 7 Anchors

I felt untethered in the hospital – adrift and swept away from my world that I had thought was safe and real. Many days I was miserable and afraid. People were nearby, but they were strangers. I found during those times that faith, family, and friends are more valuable than fortune.

When I felt the weakest - from illness, treatment, or when I was hungry – I had many helpful staff persons if not by my side at least within a button press, or, when I couldn’t find the switch, a desperate scream away. They were generally very sweet and tolerant of my less than amicable moods. A night nurse could be a savior when he or she would bring me nourishment (even if that might be just liquids pumped in through a tube). Sometimes just someone coming in and rearranging the sheets (which I always seemed to mangle) could be the high point of my long night and might mean the difference between my drifting off for some escape sleep or staring at the walls all night long. But the people came and went in the night and at shift changes, so I learned better than to get too attached to any individual. Many doctors saw me, and I appreciated their attention, but I often received mixed diagnoses and advice. Right or wrong, I viewed this as their confusion, and not just mine. And although “on call” meant something, it was not enough.

The consistent support from my family meant far more. I could count on my wife to bring in food or wash my hair or find the lost remote when hospital personnel were busy seeing other patients. I could depend on her to correctly re-insert the tube I accidentally yanked out when a nurse wouldn’t do it for fear of some legal repercussion from me if she did it wrong (fortunately for Becah, I may gripe if she erred in replacing my tube but I wouldn’t sue her). I longed for the pictures my kids drew far more than looking at the results of another test that was run on me.

The gifts from family are immeasurable.

Friday, October 19, 2012

Reflection 6 The present moment

Meditation teaches one to focus on breathing. Breathe in slowly, hold it there, and slowly breathe out. Vietnamese Buddhist monk Thich Nhat Hanh explains that if a person focuses just on breathing, he or she can fully enjoy the present moment. This is the time we have. The past is over, the future not arrived. We waste so much of our lives regretting the past or worrying about what might come, that we miss out on the one time we have to live completely.

A serious illness will get your attention. When I was in treatment, I longed for the old days when I was disease-free. Or I hoped for the future when my burden would be lifted. It was hard to live in the present moment at that time, because that moment was not very pleasant.

That time is now in my past. It can be left there.

My advice to others is to enjoy the present moments. Play a guitar, compose a song, play baseball with your kids – whatever your choices of fun may be. Don’t put it off for tomorrow.

I have had to make adjustments to some activities due to the TIA that affected the nerves in my left hand. I must look at my guitar resting on its stand in the corner, unable to play it anymore. I must type the words on this page with my right hand only, as my left hand is splayed and I cannot coordinate it to type letters. My work and my hobbies have been compromised by an unforeseen event.

Many challenges surprise us in our lives. All the more reason to grab every moment and treasure it now.

Thursday, October 18, 2012

Reflection 5 Staying fit

There are many ways to be fit and prepared for the highs and lows of life. We exercise our bodies by running, weights, yoga, sports – many activities. We can keep our brains agile by being lifelong learners - reading books, reading music while performing, working crossword puzzles, appearing on “Jeopardy”. We eat healthy foods and limit our little powdered sugar donuts and beer. We can be financially fit by saving money, investing wisely, not ever retiring, and restricting the number of BMWs we park in our driveways and big screen televisions we install in our houses.

Our challenge is to be prepared, not as pessimists or worriers, but just prepared for possible health challenges or catastrophic illnesses. We can’t depend on government handouts or the generosity of the medical and pharmaceutical establishments, or for the insurance companies to pick up the whole tab. They don't get rich paying your bills.

You can’t hide from the mailman when the medical bills come piling up either. Eventually someone will send Vito and Louie to your house to break a few fingers and persuade you to pay (or worse, send your name to the credit department).

You can’t afford to be sick. So try your best not to be. And if you must be, fortify yourself ahead of time.

Wednesday, October 17, 2012

Reflection 4 The three musketeers vs. the three stooges

Quote: “one for all and all for one!” (the 3 Musketeers)
Quote: “and every man for himself!” (Curley, of the 3 Stooges, after Moe quoted the above)

During my treatment, I was inundated with CNN chatter between Democrats and Republicans about the health care dilemma and ObamaCare. Both sides beating their chests and pointing fingers, believing they were right. I heard medical staff in the hospitals talking about how doctors would flee in droves rather than be a part of the “socialized medicine” that would come if the Democrats passed their reforms. I was, of course, fortunate that I was sick before that happened, because I was personally glad to have the A-team working on me instead of some lettered group further down the alphabet. However, as soon as the bills started flowing to me and I looked at some of the itemized charges (including hundreds of dollars for a single injection and exorbitant fees for therapy sessions), I realized clearly that something is entirely wrong with this.
Bogged down government bureaucracy won’t be the cure. But neither will the unsupervised free market mess that permitted the Enron elite years ago to screw their own unsuspecting supporters to the wall, or the Wall Street debacle that let debt run rampant.

There must be a system that cares for the poor and trims the excess fat off of medical fees and insurance companies’ huge profits. How that system will work will depend on who is elected to office and how well that person can work with individuals of all political persuasions.

Whether that can be accomplished at all is a great mystery. Not very comforting if you are ill.

Tuesday, October 16, 2012

Reflection 3 Tangibles and intangibles, or, you need a mess of help to stand alone

When I was diagnosed, I received a battery of treatment recommendations. Surgery was ruled out as being too invasive and potentially damaging. An aggressive combination of chemotherapies and radiation was chosen as having the most likelihood of success. I also received various shots to stimulate my salivary glands, as well as medicines and vitamins to regulate my body’s general functioning. For any patient with a similar diagnosis, these tangible methods would be considered. Whatever approach employed would depend upon both the location(s) of the disease, the pervasiveness in the body, and the health of the individual. You can only be slapped silly with therapy if you are in shape enough to handle it. As I have stated, I started out fairly strong, but ended up bruised and battered by the very therapy that was meant to heal me.

There is also the reality of the importance of securing highly qualified, determined, and available medical staff. But even the best and the brightest have their moments when they look to the side, uncertain how to proceed.

There are so many of these tangibles to consider. As songwriter Brian Wilson said, “you need a mess of help to stand alone”.

Independently of these are the intangibles. Prayers, mental attitudes, positive actions – by both the patient and others – must be factored in to the mix. For those who like their approaches measurable, this is a messy business. It’s hard to weigh the benefits of prayer groups, determined positive thinking, desperate pleas to God, and many more of the ways we work outside the medical model to achieve the ultimate outcome – total healing (and with this disease, there is nothing less than total that is acceptable).

We even throw the hail Mary pass on fourth and long, hoping for the big score.

A sign on one of my hospital rooms said, “every day holds the possibility of a miracle”.

That miracle, the greatest of the intangibles, may be what we have to hold on to.

Monday, October 15, 2012

Reflection 2 Three kinds of people

There are people in this world who walk through life with an aura of certainty around them. They can speed down the highway driving a convertible, wearing no seat belt, drinking beer, smoking a cigarette, all while texting a friend and singing to the radio. They will not get pulled over by the police. They will not have an accident. When they arrive home, it will be to, if not a mansion, at least be a fine residence. An attractive spouse and children - sweet, and high-achieving at school – will be waiting.

No illnesses of significance will plague these people. Neither fast food meals, lack of sleep, lack of exercise, cigarettes, or alcohol will slow them down. They can waste their money paying insurance premiums if they like, but the coverage will be unnecessary. They will not darken hospital doors.

Let’s call these people “auras”.

A second group looks very different. These people are destined to be plagued with life’s maladies. They walk through life with genetic “kick me” signs on their backs. For these folks, it’s not a matter of “if”, but rather “when” the boogeyman will strike. A good insurance policy will ease the bite, but they will be bitten, and the hospital staff will welcome them as guests in their facility (maybe even reserving their own rooms).

The “kick me’s” are a battered lot, regardless of how hard they try to ward off predators.

There is, of course, a third, less extreme group, where most of us fall. The “it depends” majority find that eating well, exercising, getting rest, praying, using positive thinking, having a good insurance policy, and storing money for that rainy day will go a long way in blocking life’s slings and arrows. There is still the pesky genetic factor to consider, though. I thought I did a pretty good job of preparing myself in the necessary armor, and boy, was I surprised.

We do, though, have a fighting chance. I refused to give up, and in the land of wellness now, I’m glad I took that attitude.

Sunday, October 14, 2012


Reflection 1 Base of tongue

I was diagnosed in 2009 with what is called “base of tongue” cancer. The doctors have theories as to what causes this. Smoking. Of course. But I never smoked. Drinking alcohol to excess (although one doctor told me I would have to drink almost a fifth daily to contract it that way). I didn’t do this. Another theory is that it is caused by a virus. That’s frightening.

A recent Pulitzer Prize-winning novel called “The Emperor of All Maladies” offers a sobering historical “biography” of this disease that reveals the many faces of cancer and how complicated and tenacious it can be. We hear cheers about “winning the war” and making cancer history, but hundreds and hundreds of years after the first reported cases, it still lives.

Every day a friend or relative gets diagnosed; each of us has had this shocking news delivered to us. We listen in disbelief, but the news is the same. I don’t know if there are really more cases, or if people are just more willing to disclose the problem now. Years ago unfortunate victims simply suffered in silence and didn’t mention the “c word”.

Whether the problem is growing, receding, or treading water, it is still around, lurking in the shadows of our lives, or sometimes brazenly strolling down the streets defying us to put a stop to it. It now stands in the spotlight, in all its many forms. People run marathons, wear ribbons, and collect money – a call to arms for battle.

Maybe in someone’s lifetime we will defeat this enemy for good and that war will be over.