Apart from the presence of drugs, I was able to eat tremendously for the first few days. The grayness in my complexion was fanned into a spark, and the return of my smile (which seemed to parallel my homecoming) added a small glow to my features.
My stomach muscles, which had for five days, been exceedingly over-worked, gave up their tenderness, and the needle marks disappeared. For two and a half days life leaned toward normalcy.
It seemed a ridiculous idea to purchase a wig; as yet, my hair appeared fully intact.
The weather had been magnificent upon my return, with autumn"s splendor at its peak. The skies were flawlessly blue, the deep sapphire blue of mountain lakes, and the oak trees sent down their wealth of acorns, grown ripe in the heat of long sunny days. The leaves were yellow, golden and red... the harvest was being gathered from the fields, and gourds were pulled from the vines. I rested in a lawn chair on the carpet of gra.s.s, while the northern breezes cooled the sun"s touch on my face and wafted through my hair. I ran my fingers through its length; feeling the resistance of a snarl, I applied more pressure. It loosened and I glanced at my hand with the dull realization that I was losing my hair. Inter-woven between my fingers were countless strands of golden brown. I opened my palm to the breeze and let the winds scatter them on the ground. I gathered my hair together, draping it over one shoulder, and inadvertently harvested another golden handful.
"It"s happening," I thought. Rising from my chair I slowly climbed up three cement steps and entered through the front door, then threaded my way to the bathroom. My hair was detaching itself from my scalp as if embarking on a ma.s.sive exodus to some other destination. I opened the medicine cabinet and extracted a comb, thinking that I would remove the loose shafts of hair to avoid snags and major entanglement.
I combed, peering into the gla.s.s before me and looked on helplessly as my scalp began to take shape between the strands of hair, and a circular bald spot formed on my crown. Setting the comb on the sink"s porcelain edge, I turned from myself to find my parents, who were busy outside. They felt sickened at the horrifyingly malevolent blow which the drugs had bestowed on me, but there was little to be said, and nothing to be done. It was no surprise, yet the reality shocked the eyes and afflicted the heart with pity.
Feeling emotionally removed from the situation, I decided to save their eyes further anguish and re-entered the house, taking a seat in the kitchen. I was not particularly sad, nor was I angry or embittered; instead I was entranced, and oddly fascinated by the sudden change in my appearance. Reminded of a certain tree which, in autumn, boasts its splendor for many days and then suddenly abandons each of its leaves almost simultaneously, creating a barren ma.s.s of timber in one day; I felt certain that all of my hair would fall out by evening; I had never dreamed such a transformation could occur. It was happening so fast.
Mom came into the kitchen and studied me with shadowed eyes. Within two hours, the shine of my hair had been replaced by a deadness, a gray lifelessness, which prevailed over both the detached and sagging strands of hair as well as the healthier group whose roots as yet remained firmly implanted in their polluted ground. The invisible reaper moved stealthily through its crop, mowing random stalks with a keen-edged blade and littering the malignant, gray harvest aimlessly and chaotically above their once-healthy roots.
The sheared strands slid down my head, and converged into a heavily inter-woven ma.s.s of hair at the nape of my neck. It was matted and thatched, the dead clogged with the dead and dying. It was impossible to restore order with a comb; the only hope rested in the jaws of a pair of scissors. Mom took the clotted ma.s.s in her hands and clipped the length to my shoulders, discarding the ashen-gold into the waste basket. "Hair couldn"t be dead," I thought,"but I have just witnessed it die." Why else would hair suddenly lose its shine and lapse into a gray-sheened, death-like shadow? Cut hair reflected life; my hair had been poisoned, robbed of its shine. It was different than the curl pressed between the pages of my childhood memories; no book wanted these lifeless strands, nor would any memory desire to recall them.
After supper Mom and I dashed to the shopping center to look for an appropriate wig. I wore a handkerchief about my head in an attempt to conceal my rapidly balding scalp, for baldness was not as easily accepted in a girl as in a boy; some men shaved their heads at the onslaught of summer heat; while others did likewise for sports.
When we arrived at the wig department, it was obvious that we had waited too long. I selected several styles that appealed to me, and removed my scarf, to sit self-consciously before the mirror as the customers filed past. Some glanced curiously at me, wondering about my noticeable sparsity of hair; I now had sympathetically few hairs left, and my part revealed an inch-wide swath of white skin. Donning a wig, I studied myself with amus.e.m.e.nt. The wig had so much hair. I never had that much hair. I lifted it off, replacing it quickly with another and adjusting the new one back and forth. I wanted something which was as modest and natural as possible. Why did they all have so much hair?
This one stood two inches off my head; it felt like a hat. I tried another. Not bad. How about a blond one? Well, it was worth a chuckle or two.
I finally decided on a shoulder length wig which sported bangs and a slight curl. It was promptly boxed while I replaced my handkerchief around my head. I wasn"t bald... yet. I"d have plenty of time to wear the wig. It was a relief to escape the peopled store. The wig would prove to be my ally and my foe in the months ahead, being both a concealment of the truth and an object of mockery and bewilderment.
The next morning I woke to find hair on my pillow, and rising to look at myself in the mirror, saw plainly that I could consider myself bald.
No hair remained except for a few stubborn wisps which clung fiercely to my scalp like December leaves that refuse to fall even after winter"s icy blasts. My lashes, brows... everything... had been depopulated. The mirror seemed to reflect incredible youth and fragility. Painfully thin and hairless, I resembled the gaunt and disciplined Buddhist student. Withdrawing from the mirror, I went in search of a pair of scissors to bob my wisps to a more reasonable length of one inch, then took my wig from its styrofoam head and placed it on my own. I peered at myself with disgust; "It couldn"t be much worse," I thought, and headed toward the kitchen for breakfast.
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Chapter 13 Year at Home and Diary
"Chemotherapy ravaged the body and tainted the mind just as the cancer against which its debilitating powers were supposedly aimed."
CHAPTER THIRTEEN
Year At Home And Diary
Due to my poor and unreliable health, I never re-entered junior high; it would have been both risky and impractical. I would have forever been involved with past homework because of frequent absenteeism, as well as further depleting my energy level through normal, daily activities. Individuals having good health were often taxed at the day"s end; I knew I could not have kept the steady pace that school demanded of those desiring to succeed.
Standing 5 ft., 8 ins. I weighed, at times as little as 75 pounds. My eating was sporadic; on certain days I wouldn"t recall having eaten at all. When I did eat, my nauseousness would span 20 minutes to several hours. Sometimes my only relief would come after vomiting, although that seemed a rather drastic and unpleasant measure, I found this voluntary vomiting to be more agreeable than sitting motionless in a chair for the entire evening to humor my stomach, when the eventual result was to be the same anyway. I was soon quite practiced at manipulating my stomach, as well as determining whether my nauseousness would irreversibly result in oral elimination or if it would finally subside without an event.
Ideally I was to eat several small meals throughout the pa.s.sage of the day; this would better allow my stomach to process food, as well as give my body the sustaining energy it so desperately needed. I was not overly thrilled at this proposition, as eating seemed only an open invitation to sickness and discomfort. To facilitate my obedience to a greater degree, my dad offered a monetary reward for drinking a quart of milk each day. I accepted the offer, yet remained wary of food.
Although there was nothing which did not, at one time or another, turn my stomach, I discovered that certain foods disagreed less than others.
One of the "sure things" was bread... the more refined, the better.
So called "health foods" were always a mistake, as were foods rich in fat or sugar, such as salads tossed with mayonnaise or pies of any concoction. Oddly enough, I seemed to be able to eat cake; I determined that this was due to its bread-like consistency. Perhaps other successes such as my apt.i.tude for chocolate, were based more on luck than digestibility, yet chocolate was eaten quite frequently throughout the year in which chemotherapy treatments were administered.
My eating habits and general health depended on the schedule of chemotherapy. Directly following my last treatment in the five day series, I could eat voraciously, (or so I thought in comparison to my usual appet.i.te). Then, after three or four days, I would again return to "normal," fostering nausea after each morsel of food. Needless to say, my l.u.s.t for food disintegrated upon the arrival of nausea and I had to force myself to eat, which quickly became tiresome, for I realized that only sheer luck would save me from sickness.
Furthermore, I actually became weary after a meal accompanied by stomach complaints; my body, I rationalized, was trying to relax itself to dispose of nausea, or the nausea caused such inner chaos that my body wore itself out during the conflict.
Soon after the chemotherapy treatments had commenced, my sister offered her a.s.sistance with the latest family concern and expressed interest in monitoring my progress and general state of health. Through mutual agreement, a plan materialized in which, on our way home from Rochester, Mom and I should stop at Sharon"s house after about five and a half hours of driving, where I would then remain for three or four days while my parents were at work. In this way, I was not alone when I felt the weakest, and could easily obtain help if I needed it.
Sat.u.r.day morning my parents would bring me home.
I enjoyed the post-treatment arrangement, for I had always liked spending time with my sister and, at a distance of 80 miles, few were the occasions in which this was possible, especially since she had two young children and a home of her own to maintain. Although the circ.u.mstances under which I stayed with her were not the most appealing, we still found time to shop on good days or amuse each other through the situations that life itself readily provided. Several most unforgettable hours were spent laughing hysterically in front of the bathroom mirror. Since I had lost my hair, Sharon sewed two bonnets from scratch, cutting circles of material and fitting elastic within the perimeter, to warm my head when I slept or simply did not care to wear my wig. Having no pattern from which to judge an appropriate size, however, the bonnet was large enough to conceal my entire head; trying it on evoked immediate wails of laughter from us both. Of course, I could not let the matter rest and continued with further antics, shoving it over my ears and acting like an old woman who couldn"t hear for the voluminosity of the hat, and then pulling it over my entire head with the elastic about my neck and p.r.o.nouncing that I was a lollipop. Amid our slap-happy howls (for the hour was late), her husband must have wondered if we had lost our minds; moreover, we were trying our best to stifle our laughter so as not to disturb her sleeping boys, which, in such a hopeless situation, only served to escalate the humor reflected in the mirror. I was able to eat ravenously for three to four days following my treatment; this meant, of course, that I ate well until I had to return home, by which time my body had restored itself to a reasonable degree and no longer tolerated food to the extent it had initially. Mom soon developed a complex about her cooking, which persisted until summer when I went directly home after receiving treatments, instead of sojourning at Sharon"s, and ate my Mom"s culinary offering pa.s.sionately.
Upon my return to Moline I had to appear at the hospital for weekly blood tests to a.s.sure that my white count was not "low." If the test results were unfavorable, however, I had to have daily blood tests until my count was determined as normal again. A low white cell count paralleled a higher susceptibility to germs, as the immune system did not possess its usual fort.i.tude; although, physically, I never felt any different when I had a low white count, emotionally it paralleled a fleeting cantankerousness on my part since I was not overly thrilled at the prospect of enduring more needles. I was fortunate that I never contracted any serious maladies; perhaps if I had been plagued by viruses I would not have viewed the routine blood tests with such disdainful inappreciation. As it was, my only health problem was cancer; all or nothing must have been my system"s motto.
One week before the next series of injections, I would begin to feel better. My appet.i.te improved despite the lingering after-affects, and energy was on the rise. This period of time would have been thoroughly enjoyed had it not been for the upcoming event, after which my improvements would again run foul. The pretreatment week was also the time at which I felt most able to venture out of the house, and would accompany my aunt or my sister-in-law on small shopping sprees during the day. I began to feel human and part of society, yet as I licked my wounds, I could envision the battlements to which I would willingly march to surrender my waxing health.
Despite frequent bouts of nausea and marked fatigue, the foremost reason for my absence from school was my body"s severely depleted immune system. It was deemed more sensible to remain apart from the various germs circulated by the students than to place myself in possible jeopardy by direct contact. Should I have sustained a severe infection, the results could have proven fatal. The chemotherapy killed healthy cells as well as cancerous cells; it is a grave wonder that one can withstand such violent treatment.
After several series of chemotherapy, I recalled my thought which viewed cancer as the enemy against which many wars were waged, and discovered that my a.n.a.logy was not complete. Chemotherapy ravaged the body and tainted the mind just as the cancer against which its debilitating powers were supposedly aimed. I felt that the war did not exist only between cancer and the body, for there was also a constant struggle between the drugs and the body. As the body fought for life, cancer fought for death.... of this, there was little doubt. Yet as for the drugs, I became uncertain as to the side on which they actually adhered, and the voice murmuring "It"s for your own good" became an indifferent noise at the base of my consciousness.
Although I was unable to return to Jr. High throughout 8th grade, I soon acquired permission to study at home under the instruction of a tutor, and in this way, maintained my level of educational curriculum as well as my status as a "student." Receiving instruction on a one-to-one basis was definitely one of the more favorable aspects of my new life-style. I fully realized the impermanence of this enjoyment; upon my recovery, I would once again be hurled amid the mob and mainstream of society.
My tutor, Mrs. Kruse, was a.s.signed to me for the entire year. Together we covered the realms of English, math, social studies and science with the help of a collection of text books which she obtained from my "would-have-been-teachers." Several times each week she would stop to teach and collect previous lessons. Since she was amiable, highly intelligent and challenging in nature, I looked forward to her visits; the time always pa.s.sed quite rapidly. In addition to prescribed lessons, Mrs. Kruse suggested reading material which she deemed of interest to me, and as a highlight to one of the social studies chapters, drove me to a local museum. The trip was a memorable occasion, if simply due to the fact that I spent the majority of the days alone and at home. She also demonstrated interest in my extra-curricular activities as well as the regular academic subjects; I would sometimes show her my various crafts and "works of art" with which I involved myself to abort any loneliness or dejection I might have otherwise encountered had I not kept occupied.
My projects included anything which was not overly monotonous, and time thus spent would often encompa.s.s more than one casual employment to a.s.sure that my interest would not shrivel up and die before an object"s completion. Occasionally one of the lovely ladies from church would include me in crafts, and consequently, I turned out decoupaged eggs and quilted pillows by the number. I attempted a painting of a rural scene, and on other days I would draw, sew, or macrame; at times I would pinpoint my interest in the creation of gifts and culinary delights.
A prominent aid to my artistic whims came to me by way of my father"s love and craftsmanship; he spent hours of his spare time constructing a shadow box for miniature arrangements. Through the same five days, during which time Mom and I were in Rochester for my treatment, he also repainted my bedroom. I was awestruck upon my return to think of his feverish, love-wrought labors; through work he was able to ease his internal suffering which accompanied my physical trials. If nothing more, he was at least DOING SOMETHING, which seemed to allay one of his foremost grievances toward my illness in a temporary fashion.
I felt relieved to stay at home that year; it would have been difficult to feel comfortable when I was sporting a wig. At this age, so many kids allow themselves to be governed by popular opinion, whether or not that opinion has been justly founded. One may be treated kindly only to be defaced later in private discussions. When fear based on one"s acceptability governs his actions, it is his convictions and conscience that sustain punishment. While many students may have attempted to understand the unpleasantness of my situation, others would have taunted malicious threats or voiced insensitive remarks; physically I was to weak to withstand such cruelty on a daily basis.
That which I most detested surrounding the aspect of baldness was the wig itself, for although I was grateful for the mask it provided, I abhorred its artificiality. Wearing a wig was unnatural, especially at my age. People failed to recognize me. Moreover, it presented inherent problems of its own. It would shift precariously in a stiff wind, and a bl.u.s.tery day brought visions of it cartwheeling tumbleweed-style, across a street. I began wearing headbands, though definitely not in style, simply to a.s.sure that it remained atop my head. Another dilemma was the well-meaning oldster who still enjoyed pulling a child"s locks; unaware and full of only good intentions, what would he have thought if his teasing gesture unveiled the entirety of my hairless skull? The wig, therefore, was mainly a social impairment, for it was during group situations that I experienced the majority of my embarra.s.sment.
Aspects which aided social interaction were my att.i.tude and a light-hearted countenance. It is essentially one"s appearance that opens the door to conversation and eventual relationships; and despite my different visage, I wished to remain approachable and self-secure with my health problem. I tried to nurture realistic, yet humorous outlooks toward problems, for a sickly person wearing a smile appears more inviting to others than one who shrinks within his ailment while displaying steadfast displeasure for his predicament upon his face. If one is open and jokes about his health situation, he is also less apt to evoke fear and hesitant inquiries from friends, and for that matter mockery from the ignorant; it is no fun to insult an individual who fully accepts himself and his problem, for there is no fuel to evince an emotional fire.
I felt totally secure in my baldness only with my family and select individuals who neither balked nor poked s.a.d.i.s.tic mirth at my loss.
The wig was worn on all social outings, of course, just as it was generally donned at home as well. Certain days, however, I elected to prance through the house without it; the wig was tiresome and hot, and my head needed to escape its smothering imprisonment during the day in addition to its nightly freedom. Happily, my parents did not seem to mind the sight of my head, claiming it was "kind of cute"; a more appropriate manner of expressing my parents" view of my loss of hair was to say it was a necessary evil which had been part of the "insurance plan," and therefore deemed as acceptable as it could have been under the circ.u.mstances. I was initially amazed that they could love a child having no hair, since appearances rated so incredibly high on the scale of societal importance, and my best feature had been obliterated. To think that people found me tolerable and remained a loyal friend touched deeply upon my heart.
Thus at home baldness posed no problem for me, although I would sometimes hold back tears when I discovered a long strand of hair woven inside a sweater or glanced at an old photograph. The image of myself reflected in the mirror contrasted dreadfully with the girl I viewed in the picture alb.u.ms to such an extent that physically I felt myself to be an entirely different person. Unfortunately, I felt less of a person when I compared my selves, past to present; I therefore tried to limit these recollections by keeping occupied with crafts or other mental detours from reality.
By January I was completely used to my way of life. There was comfort to be had in monotony and sameness of routine, and while I would sometimes feel alienated from society, my solitary existence provided me with emotional security which would not have otherwise been possible.
Each day was very much like the next, and time melded the days together into oblique obscurity. When I was not occupied with my lessons or crafts I would sit, allow my mind to empty itself of all thought, and then drift to other places, beyond my own stunted life, and there catch a glimpse of reality as others saw it to be. Were it not for vivid daydreams, my year of chemotherapy would have doubtlessly provoked more duress, yet through fantasy, I was able to surpa.s.s my physical limitations. Moreover, while public interaction would often degrade my self-image, thought would instill confidence in my unseen strengths. I found that the mind possessed more beauty than any bodily attribute, no matter how brilliant the eye might perceive it to be.