"To reverse the feeling that I was the query in an unfair hunt, I had to establish for myself that I had complete control over the situation."
Return of Cancer
It was October and my classes were well under way. Seated at my favorite table with books and papers sprawled casually about, I was studying for an exam between frequent sips of coffee and sight-saving glances around the room. I looked down at myself and tried not to think; the striped sweater I wore readily acknowledged my asymmetrical stomach, even if I did not. Whatever it was had not gone away.
Several days earlier I had noticed a certain lopsidedness to my stomach region, but not desiring to worry, assured myself that it was "indigestion complicated by gas" and would, therefore, "pass." The odd part was that it did not pass, and staring down at my stomach it was still readily apparent. "Maybe I've always been like that," I told myself. "After all I did lose three-fourths of my stomach."
I must not have convinced myself, however, because when Norm and Dad rumbled down the stairs, I asked them for their opinions. As each took his turn interpreting the portents revealed by my striped sweater, the other would say, "Call the doctor if you're so worried."
I had to agree that it was better than speculation, so I picked up the phone and dialed the doctor's office. His nurse, a brusque, dominant figure, answered. I had always been rather overwhelmed by her, and in my currently agitated frame of mind, sputtered out my name and request as would an army private to his platoon drill sergeant.
"Dr. is on vacation," she stated.
"Uh, could I see the other doctor?" I asked as my emotional ball of string unraveled a bit further. I only wanted to see a doctor; it did not matter who I saw. I just had to know that I had no physical problem.
"Lauren, Mayo Clinic is where you should go."
"But I just wanted someone to take a look. . ."
"If you have a problem, you should go to Mayo…"
"But… can't you?…"
She would not even schedule an appointment.
I had been mildly concerned about myself; now I was in a state of mental pandemonium. I hung up the phone as tears singed my eyes and the lump in my throat multiplied to twice its original size. The nurse's staunch refusal to see me was like receiving an impromptu death sentence, and implied that mine was most certainly a problem too great for a family doctor to handle.
I had not prepared for such resistance and blunt pessimism, but perhaps tact and sympathy were only smoke screens when one's prospects were assumed to be dim. The two emotionally soothing elements surely did nothing to right a physical wrong; maybe she honestly felt that she was doing me a favor.
My thoughts, nevertheless, went on the rampage after the startling conversation, and in no shape to make further calls, I gladly accepted my Dad's offer to call Mayo Clinic for me. He immediately phoned to schedule some tests and a consultation with my former oncologist; only then did my frustration wane. Unconfirmed suspicions were bad enough without the additional terror of being denied a chance to search for the truth.
My new plans for the coming weekend made various cancellations a necessity. Apart from school, I had accepted an in-store promotional for cosmetics through the modeling agency and also intended to visit a friend at college, where Halloween festivities were reportedly quite arresting. Re-routing my plans was a disappointment, but I had to ease my tormented mind; excitement seemed to be raining down on me in buckets, and added a different aspect to the expression "when it rains, it pours."
The sense of urgency which had initially wrought such havoc upon me was squelched by the upcoming clinic appointments, and the week progressed without further turmoil on my behalf. When Thursday arrived Dad and I packed ourselves into my car and rolled out of the driveway toward the unknown answers that we sought to find.
For the first time, Dad and I were traveling to Rochester on our own. Because I was having a routine set of tests for a symptom that, as yet, possessed no form or definition, Mom was going to remain at home and teach her kindergarten classes. I had no objection to this, since the entire trip was based solely on the paranoia which sprouted after my questionable discovery, and frankly I was beginning to feel rather foolish for even mentioning it, let alone pursuing my suspicions. It could be anything. . . or nothing at all.
"It's not stupid if it puts your mind at ease," Dad consoled. I felt better when he said that. The last thing I wanted to be was a hypochondriac.
The envelope of appointment cards held nothing that sounded catastrophic. There were cards labeled "blood tests" and "chest X-ray" as usual, and one card that read "cat scan," I stared at the last card with latent skepticism. The name itself held no malice; with luck, the test would prove to be painless as well.
The cat scan, I later discovered, was another means of taking an X-ray, and with this knowledge, felt sure that I would live to tell about it. As it was my final test, however, I could not help but wonder if it was worse than the rest; I had noticed from previous experience that the more detestable prodding, poking and outright sampling of one's body was reserved for last, which was appropriate, perhaps, since a main event was always the biggest fight.
I sat in my dressing room, musing over the test's infinite possibilities until I was retrieved by one of the generically-attired clinicians and led through radiation wonderland to a room housing a huge device. A circular opening in the machine appeared to devour the examination table on which I was instructed to lay. This was, indeed, something new.
Once inside the room, the door closed and the technicians scattered. I watched from my spot on the rigid table as some people milled about the machine and others remained attentive from behind what resembled a sportscaster's window. One young woman began to prepare my arm for an injection, so I smiled and seized the opportunity to talk. I always felt sorry for the staff at clinics; daily they received undeserved abuse from bitter or frightened patients, as well as a significant amount of mute apathy. I wanted to disprove the possible thought that all patients had the personality of cold oatmeal. . .and I wanted to know just what the test would entail.
"Does that hurt?" I motioned my eyes at the machine's jowl, which stood agape slightly above my body. The woman shook her head and told me to remain very still as the final adjustments were made.
"Is this all there is to it?" I asked, referring this time to the injection.
"Sometimes a patient has to have two types of injections, but you probably won't…" she said. Her pleasant tone eased my mind and instilled trust, much like a friend would have done.
Suddenly everyone disappeared to the observation window and the lights dimmed. A series of instructions were broadcast from the window and then the machine came to life, clicking off pictures of my insides as I held my breath for dictated intervals.
When the lights flashed on, the woman came to my side again. She told me it would take a few minutes to know whether or not my X-rays were satisfactory, so we ventured into a trivial conversation until the results were determined. Activity resumed shortly, signaling that a verdict was at hand, so the nurse departed, only to return with an apologetic look on her face and equipment for an IV in her hand.
"I'm afraid you're going to need more X-rays," she said. "The doctor needs more contrast."
Bad news is a strange concept. It is something one considers but seldom prepares for; even life's most inevitable pain and indignities are not taken personally if they remain hidden from view. Everyone knows that he will age, but until the strand of gray or sun-kissed wrinkle appears, aging itself can be ignored.
"The doctor needs more contrast." The statement entered my mind and closed a door. Up to that moment I did not know if anything was wrong. Now I knew, and like a 30-year-old who found his first gray hair, was not surprised. I did not live in fear of losing my health and happiness; when one deals with each day, he needs not prepare. . . he needs only adjust.
I returned my attention to the needle that was about to be inserted into my arm. "Does that stuff have any effects?" I asked. She smiled at me and hesitantly said, "Well, we're told not to mention this, but sometimes patients say they can taste it and those who have had chemotherapy are psychologically affected by it and want to vomit." I knew what that meant, and holding back a grimace of displeasure, said that I had experienced the effect she described.
"Thanks for telling me," I continued. "I hate not knowing what to expect." If I was anticipating the worst, the test's actual pain and discomfort did not seem so bad. With the needle in place, the nurse turned to me and said, "I hate to have to stick needles into nice patients like you."
When the solution began to drip into my system, I felt my stomach perform an involuntary flip-flop. The hateful taste and sensation had not changed and I had to wage an intensely conscious battle against a powerful urge to gag and rid myself of the distasteful invader. After receiving a compliment such as the one just given to me, however, vomiting was unthinkable.
Once again I found myself beneath the scanning X-rays, wondering if the second search would uncover any answers. If so, I would be enlightened when we met with Dr. E.
The only information I was able to extract from the consultation was that I had an enlarged liver.
"An enlarged liver?" I spoke the words with a hint of amusement. For me this was a great curiosity. Liver was something most people refused to eat; beyond that, it was of little importance.
Apparently there was much I did not know about the body's dire necessity of the liver, but the doctor said nothing and accepted my light-hearted reaction without comment since he was unable to provide further information anyway. Testing had proven inadequate; beyond the enlargement, he remained mute regarding the possible interpretations of the X-rays. Perhaps he did not wish to instill premature fear by offering stab-in-the-dark diagnoses.
It was clear to me that I had no option but pursuit; a liver biopsy, scheduled after the consultation, would hopefully solve the mystery.
I was nervous. My anxiety could not be shaken, for the thought of a biopsy engendered memories of the bone marrow test, a test which I vowed never to take again. What terror had I willfully agreed to undergo this time?
It was a relief to hear my name called on the loud speaker; the timeI'd spent in the waiting room was of no benefit to my peace of mind.I could think of nothing else but unbridled pain, and mulling oversuch thoughts tended to have few positive effects.
After disrobing and donning a hospital gown, I was led into a waiting room used by other patients and soon began a conversation with an older woman who also had an enlarged liver. Over the fact that she was enlarged I did not argue, however, I could not resist asking myself how much of her enlargement actually had to do with her liver. Whether her mistake was due to self-deceit or a lack of awareness did not matter; concern and uncertainty were two elements we shared, and we wished each other luck as a nurse ushered her from the room.
I spent a brief while surveying the floor before I was called. A nurse directed me to a room and instructed me to lay down on a hard examining table, whereupon I was left in darkness for two hours before a doctor arrived. Meanwhile my state of mind deteriorated rapidly as I listened to the sounds emanating from the surrounding rooms. Most were only voices trailing off into the maze of corridors and finally disappearing behind various doors of anonymity. However, with my mind housing its unarrested and nameless fears of the forth-coming biopsy, other sounds were transformed into horrendous tortures, the likes of which I would surely undergo. One such fanciful flight of imagination was set off by the unimpeded verbalizations of an old man whose room was across the hall from my own. Since my door was propped open, I had noticed him sitting in his wheelchair and muttering complaints or idly sucking his gums. Eventually the door closed and his tests began, leaving me to interpret the activity behind the door through his vocalizations. There were garbled grumblings, which I had expected, but then groans replaced words and I began to worry. They were awful. They were the cries of horror shows and nightmares, scaling a full octave and attaining a tonal quality which rivaled professional sound effects. I was impressed; so much, in fact, that my stomach had managed to tie itself into a perfect knot by the time the doctor arrived. I appraised the old man's throaty outbursts as the sound track to a liver biopsy.
Luckily I was wrong. Whatever were his trials, whether real or imagined, they prepared me for optimum punishment, to which I was never exposed. Although I was horrified in my solitude and misinformation, perhaps my final opinion of the test's severity was buffered by the old man's wailings.
After my long wait, the nurse who had initially shown me to my room entered, and finding me lying in the darkness, flicked on the lights with a round of apologies. She explained the unreasonable delay was due to an inability to obtain the CAT SCAN X-rays. Generally Mayo's system worked quite effectively. Considering the large scale of the facility, I was amazed that things ran smoothly at all.
The X-rays and doctor arrived in unison and the test commenced after a brief series of questions on my part. Naturally, I desired to know if it would be painful and was informed that it "could be." I was then given a local anesthetic and braced myself, recalling that the pain killer did little during the bone marrow test.
"Did that hurt?" the doctor asked.
"What do you mean?" I countered.
"I've taken the biopsy," he returned.
"What?" I was astounded. "I didn't feel anything!" The doctor instantaneously became my best friend.
I remained on the table to await the results of the biopsy which had been whisked away to the laboratory. Since the doctor had to judge his targeted area through the X-rays, there was no guarantee that he would hit an affected portion of the liver; if the lab reported finding normal tissues, the doctor would have to try his luck once more.
As my luck would have it, another biopsy had to be taken. If that one failed to produce answers, my condition would have to be determined through alternate means; cutting into the liver, as in a biopsy, created the risk of hemorrhage, and therefore limited the number that could be performed at one time to two biopsies.
The doctor posted my X-rays on the light box and studied them intently. I wondered what information he drew from the strange transparencies; the X-rays told me nothing at all. If I had not known it was my liver, the mottled shape would have been no more than a nameless abstraction.
"Are livers supposed to have spots?" I queried.
The doctor shuffled his feet for a few seconds, then admitted they did not. I guess it was a stupid question, especially since the elusive spots were the intended targets in the test, but I had to know all of the available facts. The truth was my comfort and my ally; it was the cure for fear born of ignorance.
The second biopsy was also determined normal. After the long day my knowledge was still limited to the fact that my liver was enlarged and spotted; it was information, but it did not satisfy. To Dad the normal tissues found in the biopsies were good news; i.e., if biopsies in two different areas were clear, I could not be seriously afflicted. To me, however, the findings punctuated the necessity for more tests and promised to prolong the unhappy state of emotions which accompanied a dearth of solid facts. Thus, as I laid on a hospital bed waiting as instructed for four hours to protect myself from internal bleeding, and having worried excessively and learned relatively little from the former expenditure, I could not look upon the day without thinking of the expression "much ado about nothing."
Relatively little testing was done at Mayo over the weekend, so my dad and I planned to go home for Halloween and two days of normalcy. Because of my biopsies, however, the doctor recommended we remain in the city over night to avoid excessive movement and possible complications. Homebound Saturday morning we planned to return to Rochester on Sunday evening, at which time I would be expected to check into the hospital; Monday's agenda would include surgery. Having exhausted all the other less radical options, an exploratory operation was the only manner available to determine the mystery concealed beneath my flesh.
I was glad to be home. Holidays were made to be spent at home, in my opinion, and Halloween was no exception. That weekend, though, was especially important to me. Like my trip to Colorado before the operation for cancer, coming home was quite possibly my last taste of the life which I had lately enjoyed; I needed not kid myself that the operation's results could change my life in such ways that it would never be the same again. The present was all that was mine, and nothing was certain but the few hours of autumn sunshine and jack-o-lanterns which graced the days. Those were the elements which I embraced with all of my enthusiasm until it came time to leave for Rochester.
The drive was memorable for many reasons. Dad and I were, once again, traveling alone to the clinic; the three of us would have gone, but since Mom had employment obligations in the form of parent/teacher conferences, she decided, for the parents benefit, to remain at home. It was the year's first conference and no one could have substituted. With my car's heater useless, it was also the first time we drove the truck. Because the truck had a manual transmission, steering and brakes, and Mom's blood pressure rose at the mere thought of having to drive it, we presumed it would nullify her nightmares if she retained use of the family car. Finally, it was the first time we had ever driven to the clinic by way of the prolific back roads that skirted the northern farmland; though we stopped at various intervals to assure our progress, only once did we find ourselves on the right highway traveling the wrong direction.
All things considered, it made an interesting drive, and between eating lunch in a small town and buying M and M's at a gas station and watching Iowa's flat land slowly transform into the more hilly dairyland of Wisconsin, I did not burden myself with the essence of our trip; I found more importance in enjoying the seven hours than stewing in the ignorance of my health situation.
When we reached the outskirts of Rochester, Dad pulled into a gas station to fill up the tank and I jumped out of the truck for a stretch. It had been a beautiful autumn day. The buildings now etched long shadows upon the sunny landscape; soon shadow would meet shadow until all was covered by darkness. I turned slowly to face Rochester and my eyes locked on the two familiar buildings which towered above the city. The clinic buildings, old and new, represented an integrity in medicine which commanded respect; they could bear the happiest or the most solemn news, and remain untouched, for in those two buildings illness and death were more commonplace than health. Brothers of the same mind and purpose, the buildings formed an entity of themselves, daily inhaling and exhaling patients irregardless of whether the patients actually survived.
I took a deep breath to still the sudden, wrenching nervousness which clenched the pit of my stomach. The two buildings defined the reason I was there even if they, as yet, gave me no real answers. It was then that my joy ride ended and the unhappy reality of retiring for the evening in a hospital room created waves in my mental calm. Even my so-called "last supper" was clouded by anxiety.
One's natural reaction is to run from a threat, and to postpone less palatable situations as long as possible. For me, however, there was always a point at which flight and postponement no longer satisfied my emotional needs, but instead created agony in their own right. When I reached that summit, I grew intensely nervous and within minutes made a 180 degree turn which boosted me into an entirely different mode of thought. That which I had fled, I sought, and if I was denied the pursuit of my goal, I would experience an inner explosion of panic. To reverse the feeling that I was the quarry in an unfair hunt, I had to establish for myself that I had complete control over the situation. In effect I did not "give in" or surrender to a stronger authority; my flight came to an end through a deliberate, conscious decision on my behalf.
And so it was that I finally decided to check in to the hospital and surrender my body to a world of white. Once I was clad in the gown, my identity became synonymous with scribbles on a chart, and color, the brilliance of life on the outside, drained away. Hospitals robbed me of something; I could be happy and possess a positive outlook, but the energy and vitality of life was inaccessible. Perhaps this blandness in my soul was a way of coping with adversity, for if I had little passion from the outset, no ill tidings could evoke a particularly heated or irrational reaction.
Dad left relatively early for his motel, or maybe my feeling of isolation only made it seem that way. Had I been able, I would have left also; sterile atmospheres are rather nerve-wracking, and I knew Dad was nervous enough without the added pressure of whiling away the twilight hours in a cramped four-bed hospital ward.
The room had no T.V. so I turned my attention toward the window. Tiny dots marked streetlights and houses, but the vast darkness prevailed over most of the scene, creating a solitude which mirrored my own. During hours such as those in the hospital, I realized how terribly insignificant I was as compared to the entire world. A person could lose himself in this world.
The morning held no delights. I would not even receive a breakfast tray. I looked forward only to a day of anticipation in which I was fourth in line to leave for the operating room. I could do little but stare at the walls and wait for the morning to ripen into afternoon.
By mid-afternoon I began to wonder if the operation would be cancelled due to the lack of time, but finally several people retrieved me, whereupon I was taken through the hospital corridors on a gurney and given a different perspective of the building than I was accustomed to seeing. (Unlike some public buildings, I was pleased to note there were no spit-balls on the ceiling.)
Riding along the hallway, I also perceived a difference in myself. I was in the spot-light, the main attraction in a frightening event. . . and yet I was not worried. A relaxant had siphoned off my excess nervousness and the remaining anxiety drained away because my waiting was over.
In a partial dream-state, I watched as blue frocked workers rushed about, preparing for my operation until I was wheeled into surgery. There, bright round lights shone overhead and doctors and nurses craned their necks to see their next patient.
"You're going to feel a stick," the nurse warned.
I watched as the doctor placed the needle in my vein. For the first time I was aware of my surroundings up to the moment I received anesthesia, and it was truly an enjoyable experience. The relaxant had full control of me, and a loaded gun would not have evoked duress. I looked at the kind and gentle nurse and began to drift away, little by little, until reality faded and then plunged into a sea of darkness.
I woke up in a ward which housed three elderly women. My bed was crammed in a corner of the room with a curtain serving as the only form of privacy; from my vantage point, I was able to view an extensive portion of the hospital roof through the window.
The first person I saw was my father who appeared to be stricken with concern for my condition. Immediately I asked, "what is it?" to which I was given a sober reply of "It's cancer again." I was quiet for a moment, and then thought dryly, "It figures."
Reactions to drastic news are manifold and multicolored. To say there is a specific process through which each grief-stricken individual shall pass parallels the statement that all people look alike. I cannot regard emotional turbulence with simplicity, for each individual possesses different levels of consciousness, or awareness, which likewise renders his ability to cope with a given situation as singular as his character itself. Though one individual's coping strategies may closely resemble those of another, they still are unique.
To avoid categorizing I will remark upon some of the various reactions I have encountered, including those in myself, family, and friends as "possible reactions" rather than referring to them as "steps" and thereby applying on them a more definitive and absolute quality. While it is possible for people to experience each "possible reaction," not everyone shall.
If I was asked to name a frame of mind in which one can best cope with adversity, I would unhesitatingly say, "acceptance," for it is the most pleasant manner of greeting and harboring a potentially grim reality.
Attaining acceptance gives one the ability to objectively view the hardship and cope, in a very real sense, with the final outcome; this means there is no longer a fight for life, but an enjoyment of it. There are no more bouts of pervasive anger, fear, or depression; when these emotions do occur, they rapidly pass as do the tides of emotion in the healthiest of people. The problem is seen and understood in realistic terms, rather than as a boogy-man in the night contesting for one's life. There are no more superstitious pleas for help, and while hope is maintained, no more does one cling to blind hope.
Acceptance does not imply that the individual is happy with his health disorder; however, it does allow him to live in peace and embrace those facets of life which he holds meaningful. Once enabled to accept reality, the individual is secure within himself and can similarly project that ease upon those who are close to him.
Unfortunately there is no prescribed method of gaining acceptance; while some individuals can grasp their difficulty outright and begin to redefine their lives, others require time to work through the various stumbling blocks which often accompany trauma. Still others are never able to attain acceptance and die in turmoil.
Two factors which I feel can greatly serve toward the goal of acceptance are awareness and communication. One's reactions cannot be altered unless he is aware of them; once able to note irrational behavior (such as anger directed toward a wife rather than at cancer) he can with time change his actions. Communication's effect on adversity is that of purification, for conversation purges minds of fear and lonliness and gradually filters irrationality from one's thoughts into non-existence. In the following pages I hope to illustrate the importance of communication and ironically, perhaps, the few instances wherein communication should be squelched.
"It's cancer again!" A mere three words, and yet the impact is great, and the repercussions greater still. It is strange, somehow, to think so few words could alter the course of a life, and profoundly affect countless others; yet once imparted, dreams give way to reality, and agony can filter deep. Plans once one's own must be fulfilled by another, and the future in which one had pictured himself, shall be clipped short and uncertain. Losing all that one holds dear is rarely a kind image, for despite religion or a lack thereof, death is life's greatest mystery, as it ever shall be.
The initial reaction to a terminal illness is often that of undiluted shock, especially cases wherein the patient had demonstrated no drastic changes in health or felt no persistent pain. Perhaps the dismal news was revealed after a slight, but disconcerting health symptom; the doctor was visited with hesitant anticipation, with the hope that the abdominal protrusion was only persistent gas, or the cough was merely the stubborn remnants of last winter's cold. Although some poor souls cannot release themselves from the notion that it is "only a mistake," or "a dream," most individual's stupification will subside, allowing them to face up to the situation and deal with it as a factual absolute.
Because I had sought an appointment with the doctors at Mayo Clinic of my own accord, I was prepared for any diagnosis which the test results would uncover. Noting that my stomach region appeared lop-sided I knew there was something amiss despite my seemingly good health; thus the result of the exploratory surgery was disappointing, but I cannot say it was a shock.
I felt no need to question the test results or wildly seek second and third opinions. Viewing the pictures taken by the CAT Scan of my liver, I had nonchalantly asked, "Are there supposed to be spots on it like that?" Before the doctor had given an answer, something within my mind yelled, "Of course not, you idiot!" The doctor responded likewise, although considerably less profound.
That which helped me deal with my verdict, coupled with my suspicion that life, for me, had been sailing along a bit too smoothly and the fact that I had cancer previously, was an unusual strength to adapt to adverse situations. From early in my childhood I was able to have the objectiveness to realize that things don't always happen to "the other guy"; actually, if something could go wrong, it probably would. If there was a log poised between two opposing banks of the creek, the odds were that I would fall off of it in crossing. In a world of "other guys" I was just one, yet that in itself proved I was immune to no adversity. Thus, instead of "why me?" my question was generally, "why not me?" I happened to be one of the cancer statistics, and I was far from alone in my plight.
Mine was no easy burden, yet it was mine to deal with as best I could; wallowing in a murky pool of self-pity would accomplish nothing. When I felt a wave of pity tempting me with its utter worthlessness, I would accommodate it for a brief period and then cast it away to pause and reflect upon those whose health involved more horrid complications than my own.
In keeping with some individual's idea that everything happens to the other guy, often the same people will feel that they are alone in their suffering. The person who cannot empty his mind of envious jealousies toward the healthy only further torments himself, and subtracts from his capacity for peacefulness. Although those who yet possess their health should appreciate it, they should not be made to feel guilty for their fortune. Every mortal being will one day find himself confronted by life's ultimate reality, death.
My dad, characteristically pessimistic, was not overly surprised by the news that my cancer had returned. After all, he was quite used to bad news. It was just one more undeserved bombshell to fall upon our family. One might assume that time and past anguish would have provided a natural immunization to further emotional rending. Still, somehow he felt the pain; I saw it in his eyes. For Mom, the news was emotional heartburn and swept like a roaring fire through her chest. After Dad phoned her she caught her breath, walked to my old bedroom and stood in the doorway for a long while. Then a feeling of anger added fuel to the fire; she had remained at home for conferences, giving her time and effort for the children of other parents, yet some never bothered to attend their scheduled conferences. It had been a slap in the face; coupled with my poor health report, however, Mom felt victimized, as if by traitors. She stayed home. . . she "should" have been there.
Mom stared at the lime green walls through a transparent screen of tears and remembered me as a little girl, long-limbed and skinny. It was happening again; the impossible had returned to deal its final blow.
The pain of reality is not solely one's own. If an individual's relationships with family members and friends are of foremost importance in his life, the news of his illness will have a profound effect on everyone. Their reactions play a significant role in determining the patient's sense of emotional stability and well-being; he must witness the emotional pain felt by his loved ones, evident through tearful outbursts, inappropriate anger, or pervasive gloom, as each person thinks of the future and the way in which the loss will affect his own happiness. I feel it is crucial to share the internal suffering openly and honestly between family and friends, for a health difficulty, although borne by one, is a burden felt by everyone personally involved.
Though I had prepared myself for whatever the outcome might have been, I had not been certain that the enlargement necessarily predicted the presence of cancer. There were, after all, many other disorders that could cause the liver to enlarge. My haunting emotion that I had not overcome cancer was now parallel with reality; my "balloon of health" was beginning its descent. I focused my eyes on three flower arrangements which were blooming profusely on my nightstand appearing, it seemed, out of nowhere. They formed an odd contrast to the bleak and antiseptic atmosphere, as if to say that life can continue even in such places as hospitals where dim hopes and faltering heartbeats evoke a sense of gloom which permeates entire corridors.
I began to barrage my father with questions, many of which he was unable to answer since he had not yet conversed with the doctors to any great degree. He could only tell me that the surgeon opened my mid-section and took a biopsy. Seeing that the cancer was widely distributed throughout my liver, he was not able to operate and therefore sewed up the incision with best wishes.
Because the cancer was the same type as I'd previously contracted, the doctors believed that it had never actually disappeared in the first place, and spread without their knowledge to the liver. This might have occurred at an early age, lying dormant, or more probably, spreading slowly until it had touched numerous sites. Leiomyosarcomas, presumably, are considered primarily "older women's cancers" which may spread to the lung; this baffled the doctors to such a degree that they placed me on research after the initial bout, at age thirteen. To find that it had again defied their previous knowledge as to the behavior of the average leiomyosarcoma, recurring in the liver without so much as a trace in the lungs, was considered absolutely mystifying and unique.
Despite the uniqueness of the cancer, the fact remained that I was a young woman with a dreaded disease. . . one that had supposedly been "cured" by the lengthy operation and chemotherapy treatment. I reflected how my oncologist (cancer specialist) had reassured the permanence of my cure by saying, "There is more of a chance of your being killed on your drive to the clinic than of having a recurrence of cancer." He was that sure.
I do not envy the doctors. Daily they encounter sickness and health, yet are limited in their ability to heal and assure their patients of continual well-being. They are accused of being incompetent when they cannot act as God. They are assumed to be uncaring and detached, when in all actuality they would lose their sanity if they were subject to emotionally react to each individual sadness. When they deliver the truth to a waiting patient, they are often called tactless. They are blamed for finding a health problem and thus disrupting their patient's happy-go-lucky lifestyle. Personally, I'm content with doctors and feel a need to demonstrate that gratefulness. When the surgeon visited my room after the operation, I greeted him with a smile and attempted to make him comfortable. I knew it wasn't easy to face me; we looked at each other like old friends and he took my hand in his own. What could have been said that had not already expressed itself in his eyes?
I questioned Dr. Telander about the various specifics of the operation, and casually inquired as to the reason they did not "simply rip the sucker (my liver) out?" He then informed me that one cannot live without the organ. Slightly embarrassed, I said that I had never been much of a biology student and continued with other questions. I truly was not aware that the liver was an organ of such consequence.
Although I never encountered Telander again, I was assigned to a doctor who made one or two rounds daily to note my progress. I bombarded him with any questions which happened to cross my mind, no matter how stupid they seemed.
Earnest conversation between a patient and those with whom he interacts, whether doctors or family members, is a necessity. Although the truth is often painful and frightening, I am a faithful advocate of knowledge over ignorance, and feel it is to one's benefit if he can receive the news of his illness in a manner which is, at once, tactful and concise.
Rather frequently I have heard accounts of close relatives of a terminally ill patient begging the doctor not to divulge the full implications of the patient's health. The plea, usually something to the effect, "Oh no, Doctor, you can't tell him. . . the truth would kill him!" is somewhat curious in the context it is used, for doubtlessly the patient will die whether he knows all of the facts or not. For those who doubt the beneficiality of telling the truth, let me further illustrate my assertion. After receiving a clean bill of health, a person who has, unknowingly, contracted leukemia continues with increasing difficulty to do the activities which he formerly accomplished with ease. This individual is not ignorant; despite any clever lies that initially might have given comfort, it will be evident that something is wrong as symptoms gain momentum. Withholding information depletes the individual's right to spend his time as he wished and, I might add, to work through the possible stress that is associated with such devastating blows.
The most terrifying part of a horror story is when the killer is yet at large, faceless and unknown. This general prefix applies to any fear, I feel, because once the unknown is brought into the light and understood, it can no longer evoke the terror it had when it rampaged through the mind as a veiled monster. A person is not afraid of the dark, but rather, what lies concealed within it. Similarly, illness can evoke feelings of terror as the body degenerates before an unseen attacker. If a person is educated about his illness, I believe a great deal of trauma could be avoided. Instead of presuppositions, one had facts, and as in the horror story, once the killer is recognized, the audience is given the hope that the victim will see and overcome the horrid pursuer. With regard to the patient, this could mean hope instead of futility; when described symptoms do not appear, the patient assures himself of more time to enjoy his redefined life.
If a patient is led to believe his life is far from ended, he may put off preparations for those who shall survive him. When, through misguidance, he discovers that he no longer has the time which he was "allotted," he may feel frustrated and foster deep regrets. Preparations cannot be made without a previous knowledge of one's illness and should one fall rapidly into his demise, there shall be no time for the assumption of his rightful choices.
Many people have confessed their more precious moments were spent after the knowledge of their forthcoming death. Life was lived to its fullest, since unimportant worries fell venomless before meaningful concerns. There can be rediscovery of those aspects of life which are so easily taken for granted; one can relearn to see the world other than through the tunnel vision of self-preoccupation. Look up and drink in the sight of a star-filled night; peruse the ground for the tiniest flowers, and catch and return a stranger's smile. Savor the smell of an orange and feel the cool rain pelt upon bare arms. Often the most elemental of things bring the utmost pleasure.
I had only two objectives to accomplish while in the hospital; education and recuperation. With regard to the latter objective, I pressured the doctor, to a certain degree, to note my rapid rate of recovery so that I might be able to sample hospital food. I wanted to make certain that I ate solid food in days, not weeks, as had been the case on my initial stay at St. Mary's. My body cooperated with my scheme, and I was soon eating voraciously. I didn't care what everyone else said… I thought the food was delicious…. even though my first meals were made up of liquids or soft food. It was a joy to be able to eat again, and my body was in dire need of replenishment; I was never nauseous following a meal… perhaps my stomach was too starved to concern itself with the extra energy it would have consumed in making me sick.
The ward in which I was recuperating was rather small for the four of us who slept there, and I was more than exuberant upon receiving the information that I would soon be moved to a semi-private room. The ward was buzzing constantly with activity, as the elderly women were given various medications, mental awareness quizzes, and frequent visits by the physicians. Visits by nurses would occur throughout the night and therefore afforded little true relaxation. Privacy was also a difficult matter, since curtains were the only form of separation from the crowd; I often wished to speak with my father, but felt undeniably hindered to do so, as I did not wish to evoke an atmosphere of secrecy nor did I want to impart to the general public one of my personal concerns of fear. Another observation of my surroundings, which I might add, I found more humorous than disturbing, was the fact that my roommates doubtlessly felt quite at ease due to their obvious lack of consideration for the more lady-like behavior customary in other social situations; they freely gave full reign to any of numerous gastro-intestinal noises which plagued their comfort, creating a laughable facet of hospital living that perhaps few would appreciate. True to character, I tried my best to squelch any roars of hilarity and enjoyed the entire affair silently in the confines of my corner. My move to a semi-private room was a remarkable improvement, and I found my roommate to be amiable and very sensible. A middle-aged woman, she was hooked up to at least two machines to drain impurities from her system. Her unpleasant state was further increased by her husband's bland concern; she was alone at the hospital, which was made even more apparent when her call to home spurred less attention than did the football game her husband was viewing on the T.V. Although she chuckled about the brief episode, I am sure the apathy on the other end of the line must have hurt.
Shortly after my placement in the room I was allowed to eat "regular" food. To be quite candid, I was elated upon hearing the news and asked when I would be receiving the first sampling of solid fare. Surprisingly, I was able to procure a snack that very evening and feasted royally. My nurse cautioned me, not wanting me to have difficulties later with indigestion, yet no such ill consequences occurred and I contentedly slept the entire night.
Having been placed on solid food, I rapidly gained strength and proceeded to exercise my body to further aid in its full recovery. I still tired easily, however, and found myself obliged to nap on a regular basis; in this I have always been fortunate. . . I have an ability to sleep despite adversity. Sleep is the only drugless manner in which to temporarily release oneself from a troubled mind, providing of course, that the subconscious does not wreak its own havoc through the presence of nightmares.
The day came that I had been working toward with such intensity and fortitude of spirit. . . that being the day of my release from the hospital. When the doctor made his morning visit he informed me that I would be able to depart early the next morning. I asked whether I would again see Dr. E. before leaving, and learned that a visit was in his plans. As it happened, he arrived shortly, and before my father had eaten breakfast; this allowed a one to one confrontation which I truly preferred.
Whether through avoidance or mere circumstance, the doctors never paid any visits when my father was present. They would make their daily rounds early in the morning, long before he had arrived, or at night when he left for his motel. This seeming "avoidance" could have been due to the fact that I was no longer of child status, and the doctors felt that decisions should lie heavily on my behalf rather than confusing matters by including the emotionally wrought inclinations of my relatives.
Personally, I was relieved that I was able to confront the doctors alone, thereby allowing a fluid question and answer session, uncomplicated by concerned family members who might have misunderstood information, or in their excitement, failed to hear other facts and necessitate repetition; these group encounters are seldom low-key when they do occur, and thus I found myself ill-prepared to deal with such intense conversation while still drained from the operation itself.
When Dr. E. entered the room I had prepared myself for ingesting a fair amount of information and sat upright in my bed with a pad of paper and a pen to capture all that he was about to tell me. Moreover, the days which I had just spent in the hospital were not simply taken up in leisure time activities such as watching television or browsing through magazines; I had devoted a great deal of time to serious thought.
I feel that everyone has a limit as to how much he will endure, both in the physical and emotional sense. Since physical well-being reflects one's emotional health and vice-versa, the body will set its own limitations if one is but aware of them, and of course, heeds them.
It is not living, but the quality thereof, which for me determines my capacity to endure physical or mental pain. Life with excessive pain is merely existence, and it is precisely that mode of existence which I shall always wish to avoid. Life for the sake of life is merely the fearful abhorrance of death, the final cycle in earthly existence.
Undergoing a full year of chemotherapy was sufficient time for me to grasp a clear idea of the drugs and their side effects. I knew at 14 years of age that I would never again be placed under such physical duress; I knew that my emotional health would be in turmoil. To once again attempt to prolong life through such dreadful means would be a price too high to justify.
If one cannot say "Enough!," he is reduced to a mere shell of his former self through treatments which cannot cure; the illness itself is not so cruel. Moreover, one who accepts treatment without a hope for a cure dies in pain multiplied by the lack of peace which reflectance would have brought.
When cancer was once again found to be the culprit behind my distended stomach region, the decision whether or not to accept treatment was virtually incontestable. My only objective was to leave the hospital and return to my redefined life; I desired to regain my strength before it waned as a result of the cancer itself, and this was possible only if I had no treatment. I felt that this was the beginning of the end of my life, and I did not wish to relinquish any of that time toward the pursuit of impossibilities; treatment is a poor word to bestow upon an ineffective poison which would deplete life's quality.
The doctor wore a distinctly business-like air as he proceeded to explain the details concerning my general state of health. I methodically wrote his words on paper so that I would not forget any relevant details in my later discussions with my family and friends.
The available treatment was chemotherapy, and although there were different drugs in addition to the former lot, he professed that none would actually cure my type of cancer. The result of undergoing treatment would be the temporary shrinkage of the tumor, with the hope perhaps, that a new and promising drug would be discovered in the near future; the side effects would echo those which had so delighted me on the previous encounter. I could not help but wonder if the time lost during the administration of treatment is subtracted from the days which one supposedly gains from having it.
Seeing that I was not reacting to the option of treatment with feelings of great joy and anticipation, he then turned to the more sober issues of death via liver encroachment. Listening attentively, I made certain that all of my questions were adequately answered before he fled from the room.
Liver cancer, he said, was usually painless; if pain was a factor, my doctor could prescribe a remedy which would lessen the discomfort. As the liver dysfunctioned, it would lose its ability to metabolize body chemicals; unable to rid the body of poisons, lassitude would set in while the appetite decreased. Finally, sleepiness would overcome any effort to remain awake and eventually result in a coma until death.
I felt sorry for Dr. E. as he told me these facts. I could tell that this visit was extremely difficult for him since his eyes did not often meet with my own and he seemed eager to sprint from the room. I had been a "five years and cured" case; the fifth year after my first operation he dismissed me with a clean bill of health. We had given each other cordial good-byes, never thinking the next year would bring such disappointment.
Before he exited the room, the doctor restated that the chemotherapy treatments should commence within a month if they were desired, perhaps his way of punctuating the option which he knew I did not wish to take. I nodded in acknowledgement. It must be difficult for a doctor, one whose profession is that of helping people live, to find he is unable to offer a cure; it brings to the surface the fact that medicine, although miraculous in many ways, is not omnipotent. Once again we said good-bye, yet this time, I knew it would be our final farewell.
One of the more difficult tasks I had to perform was expressing to my family my wish to forego treatment. They needed to cling to the hope that there was something to be done for my malady, and were not pleased upon hearing my steadfast rejection of chemotherapy. Since I had foreseen, somewhat, their probable reaction, I was prepared for a lengthy duel and had therefore decided to write on paper the key directions that I wished the conversations to follow.
The two discourses which ensued were emotional, yet controlled. I knew I had a weighty task to perform if I was to gently but thoroughly bespeak my desires to my worried father, and later my mother and sister, and further persuade them to accept those decisions. I candidly explained my repugnance toward chemotherapy, punctuated by the facts that it had not worked previously and the doctor had related that although there were new drugs, none could cure my type of cancer. With all sincerity, I said I did not know how long my life would prove to be, yet I wanted to maintain a life of quality, for that best equated my idea of what life should hold for each individual; I desired to own a sense of peace which could never be attained if I continually chased the spectrum of miracle cures so prevalent in a world whose main objective, for many, is the procuring of wealth. Time itself meant little if it did not also have the amenity of joy, and in my 19 years I had experienced more quality than some individuals realize in a lifetime of 80 years; I stressed that my family was an important part, indeed, and inherent part of that quality.
I hoped that my family would be satisfied with my judgment, although their disapproval would not have altered my stance; I feared they would attempt to force treatment upon me through relentless conversation and in so doing, make life at home unbearable. This, happily, was not the case.
After receiving my dissertation, my father needed time to think and sort out the information he had just heard, and decided to take a lengthy walk into town for the duel purpose of eating lunch and trying to digest the disturbing truth which cancer brought to the surface; mortality does not concern itself only with the aged. While he was gone, I replenished myself with both food and rest. My mother was to arrive in the afternoon, and I fully realized I would have to repeat my performance for her and Sharon, my older sister. I wished to appear as normal as possible. I had curled my hair and applied my usual dose of eye make-up to improve any pallor which might have been visible due to the operation; I did not want my appearance to evoke unnecessary amounts of gloom or despair. Satisfied that I had done my best to improve upon myself, I settled back in the bed, clad in the glorious hospital garb which resembled pillow ticking and decided that I coordinated rather nicely with the rest of the decor.
When the entire group arrived it was already late in the afternoon. My father accompanied Sharon's family on a tour of the area, leaving only my mother and Sharon to visit with me directly. I noticed that my mother had lost weight, underlining the worry that was inscribed on her face; Sharon's face echoed that emotion, and I knew I must speak with care. It can be difficult to avoid mechanical speech when one is trying to maintain control of his emotions, yet to do so can prove to be less injurious to the listeners if they share one's feelings on the topic being discussed. Cold facts divulged without the benefit of a warm heart will only multiply the pain; there is no sense in hurting loved ones through callous explanations.
It was with painful resignation that my family members then present at the hospital accepted the future which I so desperately needed to control. More than my resistance to treatment, (for they too had witnessed the drastic effects which are inherent characteristics of chemotherapy) the family was besieged by the inevitability of my death. There was now the real possibility that I would die long before my parents, and in this they felt little capacity for contentment. At the close of our discussions, I believe everyone derived a handful of solace through the hope that "miracles DO happen"; there were reports of complete remission and cases in which the cancer inexplicably vanished, leaving no trace of its former habitation in the individual's body. Continuing research in the realm of cancer treatment was also a source of emotional sunshine to my family, and allowed everyone to look toward the homeward journey with anticipation.
I felt exhausted. Though I truly enjoyed seeing my mother and was grateful that my sister's family had made the time-consuming trip, I was happy to grant their leave to partake of supper. As they departed, I sunk back into the bed with a sigh of relief. It had been quite a day… and it was not over yet. I attacked my dinner tray as if it was the only food I had seen in days; it is amazing how an emotional strain can deplete one's energy as thoroughly as participating in a rigorous activity.
While I was alone with my roommate, we opened the curtain which separated the two halves of the room so we could talk and feel more in tune with the world. I felt extremely lucky to have been placed with such a personable lady, as television is a poor excuse for companionship (unless one is sharing a room with an unpleasant and irrational whiner!) After my family had departed, she expressed that she had been rather awed by my duo performances. She said she "admired" my strength and ability to verbalize my feelings, and although I graciously accepted her compliments, I told her it had been a topic about which I felt quite strongly. When one's decision is incontestable, and is fueled by past experience and anguish, the future can quite easily be foreseen.
I believe that one has made the correct choice if, after his decision has been voiced, he feels an overall contentment and freedom from excessive amounts of mental duress. Everyone must live with a patient's choices, but only he dies with them; this is why it is crucial for a patient to voice, and the family to heed, his personal opinions regarding his future.
Later that evening the troop returned from their meal and converged on the room. Since it was rather small to comfortably house six visitors on one side, we made our way into the hospital corridors to see those sights which happenstance would reveal. We eventually found ourselves in a quiet waiting room which boasted several comfortable and very accommodating couches, as well as a few tables upon which the numerous fragments of jigsaw puzzles were scattered. At this point, any form of diversion was welcome, especially for Sharon's kids who doubtlessly felt a trifle suffocated in an atmosphere where everything squeaked with cleanliness and relentless order; I'm sure they were not the only ones who felt intimidated as they passed through the marble hallways.
We entertained ourselves as best we could, electing to remain in the vicinity of the carpet and couches until it was time for them to leave. Engaging in small talk and battling with the jigsaw puzzles until totally infuriated at our lack of progress, the night fell away. When the visiting hours had reached their end, my parents and company bid me good-night and left memories of the day which had just elapsed, as well as renewed excitement for my release from the hospital. I reviewed the day's events as I lay tucked between crisp sheets and a mound of pillows; it had been an exhilarating experience, yet one that brought little actual joy except the knowledge that one has been understood and has found peace with himself.
I greeted the morning with exuberance, and the physician in a likewise manner; it was as if I radiated undiluted joy. I watched as he methodically checked my lengthy incision, and then assured him that I felt fine when he quizzed me about various details concerning my general recovery. Well aware of my excitement, he cleared my passage for dismissal and had me sign any necessary papers bearing witness that I had indeed left the ward on that day. As I rattled off my happiness for going home, he smiled, knowing the elation was no personal reflection on him, and said, "Home's always the best place to be."
When breakfast arrived, I attacked it with customary glee and then turned my attention to packing. I also took great pleasure in making myself presentable through the application of some eye make-up and donning civilian clothes; it seemed that my release from the hospital was not final until I had my shoes, instead of bedroom slippers, on my feet. I am sure that it is quite psychological, but I think that white smocks make an individual feel worse than his physical health should dictate!
I did not wait long before the family arrived and the time had come to be escorted from the building. Amid the rousing excitement, I wished my roommate a speedy recovery and presented her with one of my floral arrangements; it filled the space where her husband's bouquet should have stood. Looking back, I hope it brought more happiness than sorrowful longing for those unforgettable considerations which were never hers to enjoy.
My dismissal was something akin to a landmark affair for me. Although I was in the hospital for only a week, the freedom to walk in the cold November wind embellished my spirit with a feeling of vitality. Standing amid the elements of nature, it was not difficult for me to accept the cycle which bonded my existence to all living things. To be consciously aware of life's complexities was living in its truest sense; in life is both urgency and tranquility, yet when viewing life as a whole, there is little difference between the two. Thus the cycle is congruent; though it changes, it remains the same.
It was in this state of mind that I left Rochester, Minnesota. Later that day I was welcomed by my brother, Norm, who then received the "news" with the added support of my parents. We were generally in good spirits, which evoked a rather frustrated, "I don't see what you're all so happy about!" assertion from him; that we should be pleased when no remedy was available was disconcerting. . . with time, however, he was able to understand the importance of quality in life. He also was one who did not do those things which would bring turmoil to his life. If one continually succumbs to the notions and desires of others, his own thoughts are rendered meaningless, and likewise, is his existence.