Monday, November 2, 2009
It's harder and harder to get up for the game, as they say, after getting beat up for so long scrimmaging with cancer and now GVH with its attendant side effects. None of us have the training for it, certainly not the endurance; no matter what attitude you come up with from one day to the next. Resignation I think. The realization I had today that I'm going to have to go through this re-enactment for the next 5 years...
I really don't have anything inspiring to say about that. Maybe when the results come back I'll be a better cheerleader.
Wednesday, October 21, 2009
"A real human is somebody who feels and who expresses his or her feelings. This may sound easy. It isn't.
A lot of people think or believe or know what they feel---but that's thinking or believing or knowing: not feeling. And being real is feeling---not just knowing or believing or thinking.
Almost anybody can learn to think or believe or know, but it's very difficult to learn to feel. Why? Because whenever you think or you believe or you know , you're a lot of other people: but the moment you feel you're nobody -but-yourself
To be nobody -but-yourself in a world which is doing its best night and day, to make you everybody else -- means to fight the hardest battle which any human can fight; and never stop fighting."
I woke this morning with my usual exuberance and zeal, catapulting from bed with gymnast facility. Purpose and Prednisone torqued with instant abundance, kinetic now with anticipation and efficacy that dismisses sleep; a mere inconvenience of necessity. It feels as though Prometheus himself had handed me the fire of enlightenment in my dreams, elucidating inquiry, now incandescent with resolution, ablaze with certainty; stay out of my way! Caffeine and unpredictability brew urgency and exasperation. And soon innocuous conversation eclipse the promise of contentment that sunrise usually brings me. Suddenly the proximity of my invective and derisive stridency turns aggressive and devolves into animus, becoming malicious and entertaining, cat-like in execution; my prey overwhelmed by intensity and volume.
Once again my humility goes unrestrained. Its indiscretion belongs in the wilderness, howling in the wind with out an audience to placate it. My defiance goes unrewarded there,as it should, unable to wield conceit and acrimonious scorn. I'm always expecting satisfaction for my misguided hubris. Oh! the pathos of ego.What halcyon do I aspire? Is this a Ruse? This adolescents prank, whose sophomoric impulsiveness surges toxicity, its turmoil vexes my sensibilities and threatens my preservation. Reflux with convulsive force, undifferentiated like the corresponding cancer that has taken residency in me. How do I ventilate this caustic accellerant I persecute myself with and everyone else, vilifying the world because of it.
Unfamiliar depression looms somewhere out on a horizon that doesn't beckon the sun, the tide doesn't swell there, only accountability and I fear, dreaded consequence awaits. Is that where I vanquish this discontent? Barter compromise and offer gratitude, where none is to expected? Expectations, always aspiring preeminence and soars so close to its desire, spewing illumination, thrust centrifugally, like magnetic attraction to solar gravity and light. Like Daedalus my newly crafted wings of ascendancy become incinerated in a swirling updraft of my own infatuation and eventually in my descent, dripping melted expectation that burns with frustration. I grow tired of this illusory flight plan.
Sweaty futility leaves me dehydrated, my wings are heavier and burdensome now. I surrender to depression's darkness. It grabs at my ankles with the vengeance of that dreaded consequence, unforeseen, perhaps not. Its unfamiliarity tingles electric on the bottoms of my feet, sharp needles where I no longer feel the ground beneath them. Just air, stagnant with my own breath, crackling with foreboding.
The pressure in my head amplifies indistinct murmuring that intensifies, shouting entreaties for forgiveness. Guilt reveals itself from the cacophony, a shrill voice poised with glowering satisfaction that shatters in my head, erupting with shards of kaleidoscopic glass, freeze-framed in inanimate old bargaining chips worthless now with overuse. I wince at my own memories, indistinguishable now, veiled in diaphanous confusion of past and present. The future no longer exists, I fear. This feeling reverberates with concussive frequency, helpless in hypnotic submission, slack-jawed and limp; impaled with the shrapnel of despair. It crystallizes into sadness and regret shredding what's left of my tenuous confidence and fledgling resolve, only newly commissioned, not yet battle tested for this.
Solitude tastes bitter and metallic. My consciousness slips deeper,I long for sleep and the promise of morning seems so far away now. My ascendancy that was mine gasps under the weight of my own mass, choking in viscera and phlegm. Panic conspires opportunistically with the Chimera who totes fear and the instruments to exact my acquiescence. How much more must I surrender? I've relinquished flesh and bone, my blood eviscerated, and my marrow doesn't belong to me entirely. Haven't I earned it yet? I traded my my dignity for it, must I give up my soul as well?
Free falling I flail about reflexively, a wounded carcinomorphic creature;still incomplete, defensively prostrate, no longer predatory for truth but whimpering for absolution to avoid depressions appointment, attendant by doubt, discharged in darkness, all its abstraction undercover. For all intents and purposes, I've been discarded with barely my instincts intact exsanguinated by apathy.
I look into your eyes always nearby,watching. Vigilance disguises the wreckage your tortured with. The enigma of denial so difficult to verify with the illusion of improvement, that often blood work and pretense belie. Our endurance slips away slowly, not conditioned to scrimmage this struggle indefinitely. The assault too wearisome and bewildering ." How much longer must I be assigned this awful trust?"(...till death do us part) Death by attrition? Even my force of will, stubborn and headstrong as it is isn't strong enough without the buttress of support she braces my determination with. "How can you not know that?" My impatience is only jaded intractability, fearful of losing my supremacy and relevance. Suddenly an old man too soon, effectively useless, with too much time to resent this violation wrought on me, so cruelly inflicted; who do I blame for that? In disenchantment I sip the poison of hope, beguiled by it's seductive possibilities. But whom, may you ask, grants this reconciliation? Isn't a positive attitude enough?
I bludgeon away at delusion when I can, it's tantalizing allure tastes bittersweet though and disappointment isn't that nourishing. I had not intended for the narrative of my experience to be so self-indulgent; full of white noise and disillusionment. But it's hard to be on someones' to do list, harder still to be reminded that I still need to be.
I yearn once again for the insecurity of spontaneity, the blissful callow of my youth and it's incumbent ignorance. Answers that alluded me then, still do. Questions remain as they will with lives not yet lived. I should find contentment in that and rejoice in the adventures still to be had. Unfortunately, all my insight is corrupted by a half century of dispatch and practical stubbornness. Coping skills honed by a lifetime of crisis, myriad experience, and bad luck. Chiseled from my own intransigence and deluded invincibility. Finely burnished with the perspective of time and the wisdom of character, pieced together haphazardly to construct a foundation of principles that with steely grip I clutch to so protectively still. But to live with something is to become oblivious to it. I'm learning to resist that temptation only now. Upheaval will do that. One at a time, I'm abandoning those propensities defined to a large extent by default.
There is no exclusivity to this purpose for anyone. No single path to follow. There is no mandate, but oblivion is yours that relegates themselves to apathy. Evolution is in your grasp. It is not mine alone.
I am but a glimpse into possibility. A representative from cancer's netherworld and the purgatory of self-examination; a soldier of the ghosts of survivors past. Armed with the practical skills that will secure my transformation, gleaned from science, reason, and introspection; not surrender, as it must. I aspire for truth, faith and the certainty in the opportunities that my evolution has brought about. Not passively to be sure (ask my wife!), but with passion and persistence that will not dissipate or wane as long as I have breath. Hey! I'm fighting cancer, what have you done lately? So please.... forgive my trespass.
forgive my tortuous mania and frenzied exuberance, my selfish zeal that trespass on your increasing burden.
And while I accelerate towards some as of yet undisclosed destination, slamming into everything and everyone along the way, I look to you for steady resolve, for guidance I'm unable to give myself.
Everyday I bask in your peace and kindness. You give to me of yourself so completely, so inwaveringly . I could do more if you would only ask!
You are my light afterall. I'm drawn to it as inevitably as a moth to flame. So be still my gentle heart, if for only a little while. I will be strong again to sweep you off your feet, away from this madness that besets us both, with all the love and adulation that I possess.
Always at your side, I believe we will be in a better place for it, in the end, because of you!
With all my love...forever and ever.
Thursday, October 15, 2009
I ride my wife's bike at least every other day, or more if I can, weather permitting. I don't have my own bike yet. I wanted to make sure I could, after all, it's been a long time. Then of course, did I have the requisite discipline to follow a regimen. Isn't that every one's Nemesis? I think I had the resolve, definitely there's necessity, so it wasn't that surprising that it quickly became an activity I looked forward to the most everyday. The exercise is incrementally transforming and empowering, but there's also therapy in the late afternoon revelry I experience like anesthetic, a calming respite in exhausted stupor or maybe that's hyper-ventilation. All very meditative, except for the frenetic "Brownian Motion" that spontaneously combusts with epiphany and revelation mercilessly in my head. It's like the burst of understanding you discover in the shower sometimes, but frequently lose to some other selective priority in your brain; an override that started in my late 40's. I don't think my brain is full any more, it was lobotomy like inactivity, with a memory as ephemeral as the water circling the drain of the shower.
On the road ideas lubricated my mind with the improved circulation of cycling. Resolution become hi-def, I couldn't wait to get home to write it all down. I resisted the temptation, deciding that I would remember the good stuff. NO, I forgot! So I bought a tiny digital recorder to supplement my faulty memory, at least until the chemo damage wears off. Is that going to happen? Now I could breathlessly pant anything that came to mind without interrupting my ride or my reverie. The ride was my muse. I delighted in fanciful exploit. I railed against ideology and dogma and rode with exaggerated vigor gritting my teeth at inaccuracy. My own stridency was sublime. I examined the state of my dysfunction; Why hadn't chemo destroyed some of that? I considered that ten months ago was the genesis of my deconstruction, unraveling piece by piece into undifferentiated parts. Now in Resurrection my twisted tendons uncoil and brittle ligaments loosen still undisciplined without muscle. No longer conditioned with everyday movement.
For months I was devastated by chemo and side effects some both familiar and clandestine still. My extremities engorged with fluid unrelenting without the circulation to abate its swell. What malignancy infiltrates my viscera now? The sprocket of my bike spins with confidence, the sinew of my thighs dictate the rhythm of my ascendancy, measured one breath at a time. I am where I belong I can assert with conviction. My mantra reassures: " be still your beating heart, breath in, breath out, exhale with contented resolve". My presevation is all that matters. I must secure that by whatever means.
My intuition is keener now, my perception acute. My conceit no longer commands my observation, it is uninhibited by oversight. When I first started riding I had difficulty maintaining my wistful musing. I was disconcerted by my relatively new overture into the neighborhood. In ten years I only observed it in passing from the anonymity of my car at 35 mph. I only saw buildings, rarely people; I seldom acknowledged with more than a perfunctory wave.
From the outset I was uncomfortable with the portrayal I advertised. The specter of a man racing by purposely, menacingly in dark glasses, gasping for mouthfuls of air, in training perhaps or escaping or worse still, being pursued, but looking suspiciously like a burgling interloper ( casing the neighborhood ). My salute met trepidation, hard faces and a concerned eye. I would genuflect my contrition at each street, please forgive my trespass. And so it went until eventually came acceptance with regularity and a wave. I knew I would win their hearts with persistence. Their dogs apparently were going to be harder to convince of my benevolence. I'm not sure I frighten them more than they do me. It took awhile to stop thinking about what would happen if I was to be bitten and how deadly that might be. Every so often one would get out. The dog was more curious than it threatened as it approached or maybe it smelled the rot of chemo and determined I was inedible.
My introductory recording came from an incubus reflection I saw on the windshield of a truck. I had stopped at the busiest street I needed to cross. It's always treacherous during after work traffic. They sped by obediently in single file. There was a military urgency about the procession, you only notice from this vantage. I felt exposed and the vehicles seemed more imposing as they hurtled by in a burst of compression, squall like and deafening. Inadvertently, I looked into expressionless faces with scant awareness there, many inattentive with phone conversation. Moving headlong joylessly and blank; snapshots of humanity in slow motion when I turned my head and synchronized their passing. Blink. An instant of distraction. Atmosphere convulsed the miasma of inevitability in the vacuum of backdraft. It's void echos the murmur of pulse, kinetic now with momentum, suddenly chaste and then ethereal with the short breath of recognition; sanguine with the reassurance of prescience, somehow elegant and painless without the sound or the fury of anticipation. Never feeling ,tearless,breathless, lifeless.
I stepped back judiciously after witnessing my own demise with such dramatic violence. When I listened to my recording later I was reminded once again how our lives are always in peril (one way or another). What is the calculus of my longevity, the risks to my mortality? Death has no preeminence, only inevitability. That isn't fatalist recoil. It provides clarity and context. the clarification of self-proclaimed apostasy; fear has been my only apprehension, my Achilles; the arrow has been in my ankle all along, only needing to be excised by me.
I fear at times my language has assumed obsessive rapture, an ecumenical artifice I had not intended. But , is it so unrelatable? I know my occasional invective is fraught with apocalyptic fervor. In my angst to find truth I have discovered a crisis of faith, a loss of meaning. We should all examine our state of being, perhaps we can find improvement there. I do not endeavor to judge. The formidable task of recalibrating the extent of my own relevance, defining my sense of purpose is all I have the strength for. Recreating myself; adapting, coping, harmonizing as evolution dictates we must. And yes, at times with mordant irreverence I'll remind you that "everyday choice is presented to us in a thousand different ways; to live up to the spirit which is in us, or deny it". My spirit is intact, I see that now. I listen closely to the sound of the thinkers own thoughts; " I am the way, the truth and the light". So, please forgive my trespass, I thought you might enjoy my odyssey.
"It takes strength to survive, It takes courage to live! May you find strength and courage in everything you do. And may your life be filled with Friendship and Love!"
Wednesday, October 14, 2009
I was reading someones blog recently from a survivor adorned with gratitude, accoutered as such with trinkets of cliche' glibness. Banner slogans with all too familiar wisdom delivered convincingly with waxing pride and certitude as the piece swelled. The lack of humility was only surpassed by its triteness and questionable intention. Has my cynicism grown so acerbic, that I'm compelled to diminish the experience of others going through the same thing I am? I'm not questioning their sincerity, I have a problem with the tedious language they employ. My glass is neither half full nor half empty, in fact, I don't have a glass, and it did not come in a box.
These metaphors oversimplify the magnitude of misfortune and the crisis that ensues as a result. Maybe I have the wrong disposition for this disease. This Cancer, this disease that isn't a disease, defined by the wreckage and the toll it exacts. I know how hard that is to confront, but increasingly we speak to one another in code. A synthesis of euphamism and idiom, that doesn't express emotion, lacking sensitivity,and bereft of real meaning. I understand its attempt to impart encouragement and optimism, and maybe that's enough? Not for me. When did it our words become so pedestrian in its own banal sanctimony? Next we'll be communicating in grunts and short bursts of mono-syllables, or worse still, remarks condensed and pre-recorded, then numbered 1-? on the key pad of our phones. Isn't that like texting now? digital-phonetics, I hope not! We've all invoked this kind of pithy logic before; I think I was at an AA meeting!
I'm not sure I can abide the sensibilities that only allows for two choices. Life is rarely either/or. Where's the romanticism of a myth with its parable of hope for transcendence. I want to discover meaning and embrace its symbolism and nuanced interpretation I can identify with; exultant in the possibility of retribution, resplendent with fabled sacrifice and august faith, executed with uncompromising determination and force of will against an apocalypse of principle, a struggle that inspires ones conviction and ultimately salvation.
I want my epiphanous moment. A story that comes with door prizes, dolls and talisman, colored beads. I want to rejoice in superstition. Voodoo is more inspirational than the volume of a glass of... What's in the glass? I better not have to climb out of a box to find out! Is there alcohol in it? I'm on a special diet and I'm still undergoing physical therapy.
Why should any of us deny ourselves the luxury to wallow in our own self-absorption and acquiesce to everything that is disconsolate in us, whatever that may be; when the glass is ostensibly half empty? It's therapeutic and why can't I refill the glass later! Fear and loathing is how I measure acceptance. Denial must be characterized first to thwart its pall. Despair and anxiety is the Rubicon we all cross to find sanctuary. I'm searching for unassailable authority for guidance. I don't want my ambivalence besieged, surveyed or measured half full or half empty by amateurs who don't see that these choices require a little more introspection than that.
False contentment in abstraction has been tantalizing to me, to us, jenel and I. Fraught with expectations and hope, we overlooked the obdurate laws of matter for just some microscopic concession that wouldn't involve any apparent sacrifice of principle or physical law. We weren't asking to win the lottery, but hope nonetheless, is for gamblers and fools. We must avail ourselves instead to expose that which constrains us and confront the beguiling violence that threatens our survival. I don't think the tears I've shed over that assault will fit in that glass. I've just had my back against the wall of annihilation, there won't be much reconciliation from me about my propriety and I like my attitude just fine.
For this I've been rebuked that "I must be careful how I project my optimism, there are some who take exception if they don't think you are doing it right". I've become suspicious of those who suborn compromise and extol approbation in a glass, like some all-purpose elixir that never works, but we keep buying it. Well thanks for the prayers, but I don't have much patience for those who proselytize "That which doesn't kill you, makes you stronger..." Nietzsche is dead and gone. I don't feel stronger, it's not purifying, it's not enabling. Where's the meaning! It doesn't make me a better human being! Just somehow marginalized and invalidated.
The problem with metaphors; they don't come with directions. So they're misused all the time.
"We shall not cease from exploring, at the end of all our exploring will be to arrive where we started I know the place for the first time."
I almost titled this "vicissitudes", because it describes the manic frequency of my disposition from high to low. I tried to interpret my depression; it was the first time I had experienced it. Each part of the trilogy will be published over several days and will end with an epilogue I thought was appopriate. T.
Saturday, October 3, 2009
I've grown tired of hearing how good I look. Surprising as that sounds, cancer has distracted me somewhat,it's hard to appreciate the sentiment. And compared to how I looked a mere 10 months ago, it's hard to believe there's no artifice there either. But, more importantly, who doesn't want to hear that? I know I should, especially now that I have this $300,000.00 make-over; the haircut really defines the look, don't you think? It must be generating some buzz, I see people looking at me funny all the time. I thought I saw more concern than envy though.
"Hello,... You look so good", a typical response to introduction really, innocuous even, often said offhandedly! Pretty rare for me to have heard that kind of thing in the past, even from my wife; with coaxing! What gives? Shouldn't I be a little suspicious, wouldn't you? Is it so surprising, how I look? I think we should prepare ourselves for this look for the foreseeable future. Our delinquency is apparent, the trend is accelerating; "cancer, that disease that is not a disease, that wave of undifferentiated function, the orgy of the lost cells." I wouldn't worry about how I look, we're all in peril!
Hey,I'm looking for any validation, even where none is to be had, but superficiality doesn't address my immune system. It needs more help than my vanity. Let's talk about that. I realize it can be vexing, cancer is scary , sometimes scarier looking! But, you won't appease it with compliments, nor me.
Do I look so different? I worry about that you know. A little emaciated maybe, cadaverous to be sure; the chemo was brutal on the metabolism. I've lost 25 lbs, it may look like a lot, but it feels so good, and now I can use words like svelte and lithe to describe myself. The diet doesn't work for everyone though, it can be deadly! Is it what you expected? Expectations can be awkward you know, you really should have an exit strategy in advance to avoid that. Or, you can try cancer awareness; I wasn't prepared either.
I don't know what the etiquette is, genuine would suffice, I should think. There are books on every kind of protocol of diplomacy and decorum since Louis XIV, certainly we could design a pamphlet. It probably should include shaking hands and embracing too. Most of us who've been transplanted are immune suppressed. It's hard to stop someone gracefully, who gets the first step and already has the momentum to grope a cancer survivor. An homage to survival I think, or maybe an act of contrition. I need an exit strategy to avoid that.
Nevertheless, hearing a pleasant refrain from time to time, is after all, comforting and tantalizes my already vainglorious nature (something I really should keep an eye on; without a mirror) But, I must say, it's easy to forget how badly I feel when everyone is always complimenting me on how good I look. I'm afraid I'm getting used to the attention and given the state of my self esteem, I'm not sure it's not therapeutic.
Some days I have this ebullience about me, I'm not sure it's of any notice to anyone else. I look a little anemic perhaps, not quite a sallow glow, but perceptively radiant I think. I asked my wife if that was jaundice, she assured me; no. What does she know, she doesn't even tell me I look good anymore; everyone else does! I am also disappointed that my bald scalp doesn't shine like I've noticed on other men. Is that wax? A rub and shine would sure go a long way to improve my disposition some days.
I admit that I do concern myself with looking good, now more so than ever. My self-confidence is a little worse for wear recently. Affectation of my lost virulence dictates my wardrobe to some extent; my fashion is more subterfuge than necessity. There are only certain colors I'll wear, not everything goes with with my pallor; mostly yellows and greens, black for those days, and I'm experimenting with red; broadcasting my defiance feels empowering sometimes; but I still have to wear a hat. I placate my skin ardently, it needs a lot of rehabilitation; chemo devastated my skin--my face now belongs to Marla; my estetician, and SkinDeep Cosmoceuticals.
And finally, I mustn't forget the accoutrements; the requisite cancer paraphernalia: wristbands, water bottles and such, I'm not that thrilled with the t-shirts though (I'm working on my own) all of which I feel my duty and responsibility to advocate. A testimonial to all those who did not survive. Without whose sacrifice I may not have survived, almost certainly, just a few short years ago; when treatment was more experimental than it is now.
Alas, rapprochement I should think, is the better strategy after all. Reconciliation with a wink and a nod, or better still, some salute, acknowledging that as good as I might look and as bad as you might feel about the treachery of my circumstances, that nevertheless, my survival is a glimpse, that triumph is conceivably at hand. So I thank all those well intentioned, gentle hearts that with their kind words have advantaged my state of mind or perhaps, I should say, my inner beauty. Next time you see me, comment on that.
"I'm tired of all the nonsense about beauty being only skin deep. That's deep enough . What do you want, an adorable pancreas?" Jean Kerr
I have had the layers of my identity stripped away until left naked and exposed. I feel distorted and unrecognizable, helpless with the few choices imposed on me; or so I thought. I resolved myself to reconsider faith and whether it was reasonable to entrust my soul to its fatality. My own faith, as it were, was born out of rebellion and irreverent indifference. I disdained sanctimony and acquiesced to existentialism. Uncertainty? What's that? I believed in the invincibility of reason. Disregarding the suspect fallibility of certainty and its insidious influence, nevertheless, I could dispatch ambivalence, fear even, with a mere gesture. I'd scowl at its suggestion even now, if I could keep a straight face.
Well, my affliction is no longer audacity, is it? And if you reevaluate that alone, indeed, there is more at stake than just my physiology. What would be left of my soul? Has it become so twisted and schlerosed by a half century of objective and dispatch, conscripted in the regimen of conformity defined for me and accepted by my own dereliction or default? It doesn't matter really, it seems I abdicated those choices long ago, when I submitted my imagination for complacency!
Perhaps, for that, there is retribution in illness; a chance to confront my transgression and, to that end, avoid my own annihilation. A life endured without purpose only directive is surrender, no longer sustained by the creativity I revere so. I fear the insipidly pedestrian, the vapid conformity that is the contented rhythm en masse, as predictable as the tide; back and forth with hypnotic inevitability. Cancer hasn't done that to me! It appears I've been giving that away all by myself!
For all my peregrinations,as of late, if I can address that alone; my survival is assured, regardless what happens to my body. To that end I want to create a new imperative; to be well, to rejoice in immediacy, to feel joy in spite of my circumstances and even because of them.
I want to reconcile the fear and doubt we all experience and need to share. Conditions common to us all, that only varies in intensity for some of us, for others, too much to endure; alone. Collaborative voices with a language determined to tear away the mask of ambiguity and expose that it is only apprehension that we torture ourselves with. That in fact,our dignity, and yes, even our soul is intact and together we can revel in self-discovery.
My exclusivity is cancer, but discourse will reveal commonality amongst a vast collective struggling to find understanding and faith and acceptance and ultimately survival.
Monday, September 28, 2009
"Life on earth will always be Hell. The antidote is not a hereafter called Heaven, but a new life below. The new Heaven and Earth; born of the complete acceptance of Life."
Like everyone else, I cope with abstraction and uncertainty every day. It might have been unemployment if hadn't been cancer. And like you , I would vacillate between dread and opportunity with metronome indecisiveness. Everyday, I reinvent myself stronger and more determined, but with Sisyphean inevitability tumble backwards without the sense of purpose I had set out with. Yet, I begin anew, With increased vigor and a little more experience, I should hope, having learned that maybe , I just need different shoes.
Still, uncertainty will not relinquish its abstraction and shadowy guile. We struggle with it repeatedly, it defines our character and tests our faith. For some of us it is a plague of consciousness that is so debilitating we actually fear it more than the physical pain we anticipate. Stifled and unable to act, we succumb to it and wash it down with denial and self-delusion.
And yet again, in others it provides the possibility for a new beginning, as it has for me. New steps taken with trepidation and reticence at first, but overcome by the exuberance that discovery and adventure brings, we savor... " the sweet confection of possibility"; that I'm not sure I know where this is going, but I can't wait to get there!
Affirming that I will Survive! And although my will has been exceeding tested, as of late, I will persevere. There is purpose in that alone. Perhaps not so revelatory for some , but many of us are constricted with doubt. I have been. We are tethered, without the confidence or the imagination to wrestle the tentacles of ambivalence. It constrains us and with seemingly insurmountable challenges, we often submit our determination.
Conceit disguises our solitude. Stoic silence in the face of denial, render us unable or incapable of confessing that which is so common to all of us. We're all sinking to some extent. But fear not. We will resurface from this bottomless quicksand and I for one will be dragging my fear behind me, vanquished by reason and conquered by faith, reminding myself that my frailties won't be my downfall nor my illness or even my own mortality.
We live to die after all. We were assigned its inevitability at birth. The ultimate test is that we won't fear Life! Learning to embrace it with each breath. Discovering the potential of each moment, defiantly shouting to the heavens; I'm not afraid to die! I'm afraid of complacency; as should we all.
My son, Zack, lives in China. I talk to him every few days and I think about him all the time. I revel in his potential and I'm full of pride and conceit that I had something to do with that. His character has grown perceptively with the ambivalence and bewilderment he has known, annealed by experience. Undaunted, nevertheless, by the discoveries that come with an adventurous spirit. Ah, his spirit, I think his mother had something to do with that.
I marvel at the notion that it really wasn't so long ago that I too was imbued with wanderlust and exploit, unrestrained; in pursuit of adventure without uncertainty or mortgage payments. I travelled the world and read books inspired with fantasy and ardent purpose. Kierkegaard whispering in my head and Oscar Peterson improvising its urgency. I was invincible then, confident in who I would become and resolute to get there.
"Sea Fever", poem by John Masefield
Saturday, September 19, 2009
This started out as a simple postulation of the extraordinary work TNT does. Acknowledgment of the impact it has had on me and the gratitude I have for their efforts. This , of course, precipitated an examination of choice. Diagnosis has compelled me to reevaluate my predisposition on that. Considering, ironically, that when seemingly given no choice, you have a lot of choices to make
With that understanding , my objective is clearer. That with definition of purpose and single-minded determination my choice is no longer equivocal. I have been on my knees until now. I have chosen to rise up and genuflect the restoration of faith, inspired by the enlightenment of universal truth and the strength of purposeful action: Train, Endure, Achieve, Matter.These are empowering words indeed; a mantra for their imperative.
"...nor does your happy vagabond expect any monetary reward for his efforts. He doesn't know the meaning of effort. No one can be paid to give of his joy, it's always freely given."
Henry Miller, 1961
Friday, August 21, 2009
My experience has been at times abstract and strangely experimental in its execution. A relatively new science administered and paid for in human life, money, and support. Not so long ago, statistically, I would not have survived bone marrow transplant treatment. It has been through the efforts of so many, like yourselves, that endeavor to sacrifice and raise money and just as importantly awareness, the impact of which, has been incalculable to me and so many others like me. Among the many revelations of my experience is reciprocity and participation. I'm grateful and indebted for the overwhelming support I've received from so many, including many people in this room, who have so many times refilled my glass when I started to see it less than half full....
Upon reflection of my comments, I don't feel I conveyed my conviction; to bring awareness and provide support wherever I can in reciprocation for the care and uncompromising effort given me by my family and friends, but just as importantly all the health care professionals whose dedication and compassion never considered anything less than success. Eight months later I celebrate remission and rejoice in the increasing success of my bone marrow transplant. It will be some time before I can claim victory, or some acceptable version of that, perhaps next year or the year after that. I can say with certainty that for now detente has been achieved.
Tomorrow, opportunity is mine and I have endeavored to embrace what is availed to me each day. Inspiring words indeed, but a concept more easily said than done. Intrinsically, illness hasn't changed me that much, chemo has disrupted how my mind and body operates to some extent, to be sure. But, I haven't metamorphosed into someone or something else, at least for now. The revelations of recent months have given me some perspective that has caused me to reexamine the choices I have made. Many of which were predisposed by cynicism, obstinacy, or expediency.
That evaluation had caused me some consternation when back in March I serendipitously discovered this small tome in the book store. A little gem* that has since had some impact on me. Without too much preamble, the author describes the concept of choice, and how so many of us have relinquished the freedom of choice through default. ...."being conscious and aware enough to choose what you pay attention to and to choose how you construct meaning from experience... ones' default is the belief that I'm the center of the world and that my immediate needs and feelings are what should determine the worlds priorities".
In default one gives up freedom, imprisoned in individual compartments of thought and ideology, rather than the pursuit of what is truly important...." that which involves attention and awareness and discipline and effort and being able truly to care about other people and to sacrifice for them over and over in myriad ways every day". For those of you who sacrifice and participate for that which is truly important in myriad ways everyday I hope will be reciprocated with attention deigned with generosity and charitable hearts.
Thank you T.
*"THIS IS WATER" by David Foster Wallace.
Wednesday, August 19, 2009
Yesterday, a friend of mine passed away. We weren't close and I really didn't know that much about her. In fact, we had never met, but I felt an unusual connection to her. She was also suffering from cancer. What kind? I don't really know. The more I learned of her resilience and stoic dignity, her intractable perseverance ( for almost 5 years I was told), the more intense my admiration for her became.
Her inspiration to me was imperceptible at first, as I struggled with my own cancer. I had not yet experienced the revelations that prospective brings. It has taken time, time that continues to unravel to reveal that the spectre of uncertainty isn't so unrelenting, if only for a little while; my friend reassured me of this.
Throughout the last eight months I have met many cancer patients experiencing the success of remission. I have been inspired by their insights and rejoiced in their determination and good fortune. I have also shared my treatment experience with many others in the hospital, while I was there. We rarely exchanged words, only knowing glances and a nod with the understanding, in that moment, that this wasn't going to be the same for both us. Would we see each other again? I feared not.
That fear is still an abstraction. It won't seem to release its steely grip. My friend could always give me solace. On occasion I would hear of my friend, doing well, seemingly not constricted with fear and I imagined to myself, with an elegance that we all aspire to, that I aspired to.
With gallant dignity, I had heard, she confronted each day undaunted by her irreconcilable future; content with the comfort that pride in her children brings. I am blessed to know this pride, it comforts me everyday.
I've known my friend's son for a fairly long time, and as I learned of his mothers' condition I couldn't help thinking of chivalry and other anachronisms. Endeavors that inspire imagination of such an overwhelming order, to the extent upon which we are seldom tested. Quixotic and extraordinary, reminiscent of ones' steadfast commitment to someone else in the most desperate need, stalwart and undeterred by impossibility. Qualities rare indeed these days.
Alas, I think of my lovely wife, a handful of friends, and my own family; perhaps not so rare after all, and I'm thankful for that. Today I'm most thankful for my friend, who I only knew as Jim's mom. She meant so much to me when I didn't think I could survive, or felt frightened and uncertain. She provided me illumination and faith, her light is divine.
Thank you Jim's mom... T.
Saturday, April 11, 2009
Consistently, Jenel and I stayed focused on what's happening to me now, in the immediate. Since my diagnosis an understanding has emerged that's not necessary or even productive to know more you have to. In the immediate context up to this point, we're scholars of my ongoing treatment and Jenel is familiar with all the nomenclature she uses as an oncology radiation therapist. We are only cursorily versed on what comes next; something like, " ignorance is bliss" was the contrivance. We determined that hypothesis and speculation wasn't very helpful, as we had learned so many times before with disappointment.
But, we regroup, recalibrate our focus, optimism is reset and we move on.
My itinerary has been long and at times excruciating, the waiting interminable, but I'm finally in complete remission. I know, I said that before, the distinction being that it was only presumptive then, now it's unequivocal. However, only for a little while. I have AML: type monosomy 7. It is a very tenacious, chemo-resistant cancer, and for that reason, I require a bone marrow transplant.
Reinforcements are on the way. My brother Sean, donor designate, comes in Monday night. My biopsy is conclusive, doctors have been convened, and a plan has been made. After a flurry of preparations and logistics, I'll be returning to the hospital for transplant therapy; April 21.
Before all this, Jenel and I met with the director of bone marrow and stem cell transplantation at UNC; the czar of bone marrow oncology there. Dr.Tom Shea exudes paternal wisdom and speaks with the requisite calm and restraint that comes with a life time of dedication. Anxiety and fear dissipates, even though the prognosis isn't that great. What? He continued with measured geniality and just enough ambiguity to be both positive and frightening;..."the treatment plan to date has been successful"..."a unanimously regarded protocol, etc."..." within the acceptable range of error"..."statistically speaking and with all probability and given the cytogenics of you Leukemia"..." there is only a 40% to 60% chance of success"... provided my colon doesn't fall out!
I can't describe the side effects resulting from transplant therapy, too many possibilities and writing them down would only make my eyes glaze over with dread. Needless to say, improving health and the hubris that comes with familiar surroundings that I'd grown accustomed, hadn't prepared for that revelation. Until now, I felt I was winning this fight, or least some of the battles; already planning for life after cancer. To be sure, these were considerations that are empowering , essential to a positive attitude; delusional nevertheless. I had expectations, UGH! when am I going to learn. ...Next.
Recalibrate, reset and move on!
Whining is good, I always say. But it hasn't had the same allure as of late, or given the same satisfaction. It can get old complaining about the same thing all the time. My audience seems to have diminished lately, maybe that means; "keep it to yourself". I hope not! If so don't tell me, I don't want to know. There are notable exceptions of course; to those who don't have a choice, I apologize.
Morbid curiosity aside, at a certain age any insight into cancer can be helpful; it has been to me. I'm thankful to those who have shared. Or perhaps it's redundancy. There are so many people afflicted with cancer these days, we can't attend to all those that are close to us. Before this experience, I never knew anyone with cancer , now sadly, I know too many. I hope I'm not becoming maudlin. I strive to enlighten and share my frailty and inexperience with some conviction and perhaps a little brevity, where I can. I realize, of course, I have a penchant for examining the darker side of my own condition in some Machiavellian effort "know thy enemy". I appreciate your indulgence, it has been abundantly helpful to do this.
Well, for now detente has been restored. We'll recalibrate our focus accordingly, reset our optimism, and move on. I 'll be gone for 3 or 4 months this time. At first in the hospital and then in halfway house for recovering patients, those who need to be near the hospital for regular monitoring or in case something starts to go wrong, generally meaning... I can't be left alone, while I'm there. So , I need to organize a calendar where we can recruit people to spend the nights with me and allow Jenel much needed time to spend with her other cancer patients at work. More to follow soon. Always remain generous and charitable to others as you have been to me.
Wednesday, March 25, 2009
What's happening is that I've been sick for so long good news doesn't always register to me, I've become indifferent and resigned. My most recent biopsy shows that I have responded well to treatment. Well, that's apparently the guarded vernacular or a euphemism for remission. Jenel chants with cheerleader zeal how positive the results are. Reluctantly I ascede. My blood work improves with regularity every other day blood is drawn.
I've been resisting transfusion, even when my red blood cell count is low enough to require it, in the delusional belief that without the irradiated blood assistance, I'll get better on my own; Like I can promote my own blood production. While research has shown that bio-feedback is valid in some applications, unfortunately with me , I won't be having much of an impact on my own psychoneuroimmunology. With that being said, I know my disposition, neurotic as that may be, has been proven to be beneficial.
From recalcitrance comes great strength and implacable optimism. For now, I obediently hook up t0 IV antibiotics for 5 hours every day, take handfuls of pills to support my immune system, and visit a clinic every Mon., Wed., and Fri. to check my blood. Not exactly exciting but it gets me through the day without losing my mind to Fox News. For those of you who doubt my potential that was just some of my best optimism.
Subliminal commentary aside, I'm also defiantly walking every other day with Jenel. We're up to 2 1/2 miles now. My defiance isn't with Jenel (although she has quipped "that it's taken cancer for me to walk with her") it's in my effort to do it whether I feel like it or not. The recent peculiarities in the weather has been a wardrobe challenge for me . It's difficult to regulate my body temperature without hair. How many layers in conjunction with a variety of head dress I'm not familiar yet. Even in the house, I'll sometimes turn up the heat before I realize, all I need is a hat! A minor adjustment, I know, but one of many I'm learning to make every day. It's rather like a glimpse into old age,I suspect, and I only say that with the utmost reverence and perhaps a little sadness and I hope temporarily.
At the risk of being too optimistic, we're relatively comfortable planning for an April transplant. Doesn't that sound surreal? so unceremoniously contemplating the dates of what will be the most important day of my life. Well, perhaps, in time for my birthday on the 25th. A Rebirth, if you will. No details as of yet, too soon to speculate. We'll know more after an April 7th bone marrow biopsy that's been scheduled.
Maybe we'll have to start a pool, instead of March Madness, we'll have Auspicious April! The criteria could be determined by date and hematology. Maybe someone can come up with a strategy for a fund raiser. Have your people call my people. Meanwhile, The team in training program (The Leukemia and Lymphoma Society) is holding a golf tournament May 2nd in Magnolia Greens. If you haven't received a flyer with the details to register, please call me or Marylou. The efforts of this organization has helped to save my life. Again, remain as generous and charitable to others as you have been to me and please give blood.
Saturday, March 14, 2009
The plot thickens, as it were. I began to explore my fundamental nature at home now. I considered how much more catastrophic this could become for me. Would my soul be intact? This was a call to arms.
Home, to be at home; transcendent as the promise of spring. I'm just euphoric! At once afrenzy with delirious emotion but still strangely ambivalent. A sense of urgency ad persistent anticipation hangs ominously in the air here. A life of regimen and supervision, for all my resistance in the hospital, seems now indispensable; at home without a net. A version of X-games: Neutropenic cancer patient goes home. A little neurotic, I know, that's why they sent me home with anti-anxiety medication. Its convergence comes with a welcome respite, no matter what madness I can imagine.
Some stripes never come off, even with chemo. Anxiety is my affliction and my salvation, in fact, I'm not sure its not my best character trait. It's has provided some really good entertainment for the nurses at UNC at my expense, a little comic relief watching me struggle. Nevertheless, it has served me well and the acute self-awareness and anxious persistence I torture myself with has helped me survive. At least Ive kept my wits about me, hopefully, not at everyone's expense.
Aside from being sent home, there's not much to report. Ironically, the significance of this only really demonstrates the versatility of the doctors. My status is as excruciatingly unchanged as the length of my hair. I continue to recover from two consecutive rounds of chemotherapy. My immune system is non-existent. My bone marrow isn't producing any of the blood components essential to protect me from an infectious environment. So, operating on the assumption that you don't always get better in the hospital, I can stay at home to recover provided I can stay fever free until my imminent biopsy. After which, it will be determined what strategy will be employed in the weeks to come to prepare for transplant.Nel and I are always reticent of our infatuation with hope, we have to resist it all the time. For now, we won't speculate on the direction of my treatment.
Home brings new immediacy, both revelatory and provocative; that while alone without distractions can leave me raw and enervated, and since pacing isn't an option for now, I'm compelled to write innocuous observations amidst MSNBC on TV, and the stereo on shuffle mode, loud enough to let the neighbors know I'm home and alive. Observations about my experience at no particular time, revelry in some effort to codify the reality of one or another moment. To give context to what, at times, seems so unreal. This experience has catapulted me to a whole new level of anxiety; translating unfettered streams of conscience. Although cathartic, it's more easily considered than done, and not without the dread that accompanies self-indulgence performed in public. For the intolerant; these things(I mean your computer) comes with a delete button.
Kierkegaard was an existential and transcendental influence for me many years ago. I quoted him yesterday to a friend, a fragment of an oft remember line ..."the sweet confection of possibility"... Right now or even then I can't recall the context in what specifically. For me, this simple fragment embodies the transcendental nature of choice alternatively absolute and abstract. A reconciliation not to be gnawed on with gnashed teeth in futile discontent, but to revel in delectable anticipation, fanciful and resolute. Tom Jackson; cancer patient, not who I am, just what I've been doing lately.
I've been single minded in my effort to battle cancer in me and for any others I have the strength to advocate for. And yet does cancer define? I've only just now begun to embrace it. The inexorable specter of tragedy, its destructive path through humanity. This is a battle with a history of indifference and death. A battle I know I don't fight alone, whose carrion call I answer with optimism and perseverance; transcendent with the "sweet confection of possibility".
Thank you for thoughts and support. Remain generous and charitable to others as you have been to and Nel. And to my Nel ...forever and ever.
Tuesday, February 24, 2009
Well, again my brother demonstrates that his hubris and supreme confidence is as much prophetic as it is so many times bluff and bravado. Perhaps at cross purposes to one another at times, but reassuring , even comforting , at others. Sean is frenetic and irrepressible . He brings manic chaos where ever he goes; that can be both inspiring and frustrating, but his passion and execution is always uncompromising.
We Jacksons have all been beneficiaries to Sean's generosity and his relentless determination to rally for the call to battle. There is no mistaking that the fury of his conscription would be Quixotic and charged with intensity, contentious and brazen with purpose, but, ultimately his intellect and deep sense of fairness constrains that impetuous tenacity. Order and peace are restored and left dormant for now until, inevitably a banner is raised and call sounds and once again Sean is leading the fight, willful and indomitable. He is beloved.
And so it is today, Sean proves, once again, his unflinching dedication to his family with the chivalrous sacrifice that exemplifies his true strength. That at times he can seem bigger than life. Sean will be my bone marrow donor! This is no small contribution, considering what he'll have to go through to do it. Sean predicted that he would be a match from the very beginning, with his usual Promethean assuredness , but I dismissed it at once. After all, there was only a 25% chance for match and that's not enough to indulge in hope. Nevertheless, Sean diligently prepared for the donor kit and expedited its return. The match is all but perfect; meeting 8 out of 8 of the criteria required.
The consequence of this is incalculable! We now have a much better chance for success given that a sibling donor presents the best results. In addition, having a donor this early provides for a faster transition to transplant therapy, virtually eliminating the long excruciating search through the donor registry, that often takes up to 4 months or more. We're far from completing this long arduous journey and it's too early to to have any expectations.
I remain optimistic as always with Jenel at my side, reminded every day of the sublime love and support all of you send to me. I also want to acknowledge Betty, my transplant coordinator, for letting the cat out of the bag. Thank you Sean w/ love Tom.
I'm increasing better each day, "waiting for the other shoe to drop" as the doctors say in their best clinical vernacular. I haven't reached my nadir , or low point, so I won't be producing new blood cells. They say 4 weeks, which is approximately how long I'll be without an immune system. My Hickman port is healing. It looks more a knife wound than a piece of shrapnel buried in chest. The doctors are pleased, for whatever that,s worth. It's not always clear what makes them happy from their expression. My brother and sister received their respective donor kits. We anxiously await those results. Even though either one of them would provide a better match, it's a long shot. Jenel reports the donor drive in Wilmington flourished and exceeded all expectations. As an unwitting representative, I thank those who participated.
Jenel created a Facebook account for me, I'm still a little reticent to contribute to it. I appreciate those who do. I'm still navigating email and the diversionary potential of the Internet. It's starting to make sense to me and I have plenty of time coming up.
Again, I appreciate all the cards and emails, more than I can describe. We never close here and there's always someone here to receive your calls: 919 966-2190 rm# 6223. Skype is also available for those technocrats out there, you know Oprah uses it and it's free! And, of course, visiting hours are by appointment only ( due to overwhelming demand). Be advised: no children and shoes are required. By the way, I started writing random thoughts about my experience here, just after my second round of chemo. The prospective is a little dark, at times intimate, and perhaps self indulgent. The catharsis proved to therapeutic. I hope they're insightful.
Friday, February 20, 2009
So much has happened since my last correspondence. Continuity is a bit of a challenge after my second round of chemo. My reality is more schizophrenic. At once hovering in rambunctious anxiety or free falling into mind numbing oblivion, that I'm content to remain. Oblivion, however was only one of the stops along the sinewy umbilicus I'm connected to; inexorably pumping toxic elixir into my jugular. I have this apparatus filled with pharmaceutical alchemy suspended overhead in small teet-like bags. Persistently monitored mechanically, almost noiselessly. Sentry like, always by my side, without the maternal empathy and comfort you yearn for, only steely equanimity... Forgive the irrepressible self-indulgence. It's what you do with free time... that, or Oprah!
There is much activity though. Procedures are administered with redundant ceremony and clock-like regularity. It's very difficult to sleep without drugs. Drug and patient are confirmed with the exchange of proprietary information. all of which fits on a small card attached to your wrist. For the most part your person is rather superfluous, you become an observe while many functions are carried out without me; in the hospital, check your dignity at the door. I tried clinging to my vanity as best I could. It's all I have, really. But, alas, I relinquished that too...one hair at a time... then one handful at a time. Until, although defiant to the end, I had Jenel shave it off. New identity; Tom Jackson: cancer patient. Until then, I hadn't really felt that way.
I'm essentially incarcerated in prophylactic neutropenia. The door to my room incongruously protects me from a virulent river of bacteria and infection, that apparently flows just outside my door. It's hard to reconcile these inconsistencies whose ambiguities only codify my bewilderment. Here, they call that chemo brain, the consequence of which is drug induced forgetfulness and confusion. A little too glib an explanation, I think it's more neurological, but no one's talking.
My new friend, Carmac McCarthy so succinctly writes " you forget what you want to remember and remember what you want to forget". I started reading McCarthy's "The Road" in a morbid effort to define some context for my circumstances against his apocalyptic survival story I thought would be worse. It was a respite that was only temporary, I'm afraid.
Thoughts remain remote and unclear, scattered about like so much clutter you don't care to organize anymore. Survival is sacrosanct and irrepressible, nevertheless. The instinct for self preservation, the vestige of some primordial chromosomal mandate, compels me to horde sugar packets and little wrapped butter cubes. I've accumulated all manner of things I don't really need; gum and candies, tic-tacs and such, that many of you have sent me, which I appreciate of course, but I'll never eat them. I save them though, just in case. There might be a commerce angle, certainly bribery; the nurses love sweets.
When I described my condition to my sister over the phone she quipped, " It kinda like the human experience without the chemotherapy", It's universal. When you've reached a certain age and realize your many limitations. I feel like I know what 85 feels like, except with the immune system of a newborn. I've been reassured that eventually I'll be transformed to some alternate reality, perhaps transcendent and strengthened by this experience. It's too soon to speculate.
I am certain of one thing. I'll never convey my appreciation all the cards and emails, phone calls and visits from so many of you, who have rolled up their emotional sleeves to keep me elevated. Where to be to survive this, I think. There aren't enough words in my arsenal to describe my love and gratitude, thank you.
There are a few other people I must acknowledge. We have the doctors, of course, we refer to them collectively as the "gaggle". They awkwardly file into my room every morning, strangely quite and austere in manner, rarely harbingers of good news. "We're just waiting for the other shoe to drop", observes the attending physician(their leader), followed by a turrets like exclamation that reverberates down the halls; he enjoys his favorite observation and he emphasizes his perceived cleverness with a maniacal laugh, as if everyone understood, telepathically, whatever he heard in his head. The same questions and few answers beyond generalities relative to models that don't always apply to me. It's the context for the practice of medicine, it's frustrating and tedious and we all know it's experimental. There are doctors that have proven to be human, actually. They become your liaison to the gaggle, but all to abruptly, they're rotated out of circulation, as everyone is eventually, in a teaching hospital.
The nurses are the real care givers. Their wisdom and abundant experience is enlightening, and with enlightenment comes advocacy. To be an advocate, you have to participate as I see it, otherwise, things are done by rote, oftentimes, without regard for the patient. Sometimes a nurse will forget the humanity their employed to preserve, infrequently they need to be reminded and only gently so. For the most part, the nurses' vigilant dedication is unwavering.
Uncertainty is absolute here. It is the absoluteness you must embrace, or all your left with is the bittersweet confection of hope. Well, it melts in your hand. Hope is the currency of gamblers and fools. It's what Jenel an I bandy about with irreverent derision, like so much anecdotal fodder. You know Murphy's Law and all that. Be careful what you hope for. That's not just cynicism, it's the new paradigm in a world of disappointment, where the best strategy is accepting that things don't always the way you want or according to plan, at least not one I'm aware of. That's not to say that I'm not optimistic, intransigence won't allow me to be content for very long, if circumstances aren't going my way. Ironically that's the definition of delusional. It's not enough to hope you'll get well, you do the work it takes to get well emotionally, psychologically and as much as your capable, physically, It's a commitment and I'm really not that strong, I admit, at least not as strong as you give me credit for.
Jenel and others have reached down and pulled me out of what is alternatingly defeatist and nihilistic self pity. Jenel's stalwart vigilance and uncompromising care and dedication transcends love, at least none that I thought that I would ever know or imagine. You only think you know what love is until it's challenged. Some battles anneal the armor of love and redefines its intensity, its durability, portends its longevity... forever and ever.Love inspired poetic revelry, it's good catharsis, a therapy in which, perhaps we should all indulge.
...Different day, different vibe. Unhooked at last! Free after 5 days of inconsolable inertia. A complete reconfiguration of reality has occurred, where none of the blood in body belongs to me. My taste buds are so unreliable, the most comforting food becomes detestable and food I couldn't previously endure becomes ambrosia-like confection and as necessary as the new blood they infuse with every few days. My palate only cooperates in the extremes; salty or sweet without the nuance of flavor. The intrinsic nature of taste and smell converge only as part of some cruel joke, it seems. I craved anything I thought wouldn't make me sick. Hunger was a riddle I needed to to decipher every day while chemo assiduously scoured the inside of my stomach with roto-rooter precision. Nausea revolved with clock like inevitability 3 times a day; hospital time 7:00am, 12:00, and 5:00pm. It's a daily struggle played out in surreal hallucination, where cardboard and cigarette smoke are some of the flavors. And by the way, I thought you had to be 65 and over to eat at 5:00...
Tuesday, February 10, 2009
To those of you who visited me this past weekend, thanks so much. My spirit soared all day aloft a tempest of joviality and laughter. We were at times raucous and irreverent, uncomfortably loud , fueled by cookies and sweets until, and just for a little while, I felt I had been transported somewhere else. Sunday I crashed in glorious exhaustion, the depths of which only comes when you have an incredible time.A combination of Jenel's saintly care and alternative sources for lunch and dinner I had recuperated by Monday. My hair finally started to fall out. I was reluctant to embrace the inevitable, but Jenel and all the nurses convinced me to shave my head. Jenel had a little fun with it as you can see the photos we sent. So far the consensus is positive. I'm not so sure. Time to move on; not much I can do about it.
Today is an auspicious day. It's Tuesday; time for my day 14 bone marrow biopsy. For those of you who are unfamiliar with this procedure let me tell you. Essentially, the doctor (a fellow- specialist in the field) inserts an instrument similar to a tire repair tool and plunges it into the backside of my pelvis with the same force required to penetrate a truck tire. This instrument is hallow and once in place another instrument is inserted to retrieve a core sample of my bone marrow. The only reason this all works is because a sufficient amount of morphine and ativan are administered before he starts. Interestingly, I was fairly lucid throughout the procedure. But when it was all over I was gone for about an hour.
I should get the results from the biopsy by tomorrow. The results will indicate 4 different possibilities, none of which we'll go into right now. Jenel and I try to maintain equanimity about these things so as not to concede our tenuous optimism. When we receive the results and it's corresponding prognosis we will follow with another update. Jenel and I want to thank all of you with all our hearts for the notes and cards, the calls and goodies. I look forward to your generous thoughts and ebullient spirit every day. By the way, I'm bald now but I really haven't changed that much. If anyone needs to ventilate any madness going on in your world; do tell. Whining could be good for both of us.
Wednesday, February 4, 2009
I have a two car garage that has been so packed full of crap for five years you could barely walk in there. I finally cleaned it out this summer(it three weekends), and set up a ping pong table in there. Which reminded me endlessly of your and Mar's house in Santa Monica and all the ping pong we played in the garage. those were good times, simpler times.Zack was born, Liza and I coupled up in that stretch of time. Good things both.
When Marla wrote me a week ago about your diagnosis, I wrote there are a few people I know who could handle this beter than you . Whenever I saw you faced with adversity --from someone you to fire at Chicago Pizza Works , to when Zack had a cold as a baby and Marla couldn't handle that suction thing for his nose , to when you couldn't find matching wood for the floor at my house in Santa Monica, big or small, signicant or mundane , my picture of you in those moments is always with a smile on your face. I think you understood way before I did that this is the stuff that makes us who we are.
The requisite cancer success story. My sister Cathy was diagnosed with a cancerous brain tumor on halloween '07. Before they could remove the tumor, they discovered lung cancer as well, and gave her six to twelve months. She said to me, "they don't know everything". The lung tumor was too big for surgery they said. She had brain surgery, had no brain damage, a clean tumor removal and was up and laughing two hours after surgery. "That wasn't bad", she said to me.All the doctors were amazed by her recovery. Radiation on the brain, and two rounds of chemo for the lungs followed. She had an unbelieveably upbeat attitude and outlook through everything. It was that attitude, and recovery that convinced the doctors to change their minds, and go in and surgically remove the lung tumor. A day before the lung surgery they discovered colon cancer. A week after the lung surgery, they removed eighteen inches of her colon. Then another round of chemo. 9months after the process began, the doctors told her she was cancer free. A year after the first diagnosis, she returned to work, and is now dating her nuerosurgeon. Before the first she said to me, you know it's been awhile... what if he wants to...I said Cath, he had his hands in your brain, it doesn't get more intimate than that, let him do whatever he wants. She has a 60% chance of it returning,but most of us walk around with odds that aren't much better than that.
In the middle of all that, I had a good friend from New York send me a Sloan Kettering study. Sloan is the big cancer hospital in NYC, and the top oncologists there had been quoting what percentage of ccancer survival was due to attitude to their patients---but just making it up. Some said 15%, some said 20%, some said 25%. A new chief came in said, hey, we're Sloan Kettering, we can't just be making this stuff up. So they did a 7 year study on the role the patients attitude plays in cancer survival. Turns out they were all lying. It's 35%.
You have always had that positive attitude, which is just who you are naturally, and I know that will serve you, and those around you, well. It's my experience in life that in the end, the good guys always win. It's also my experience that you are a nuice guy.
This a.m. the gaggle told me I was the least sick person on this floor ( amongst the cancer patients), but they still won't let me leave. Yesterday was my last day of chemo, but I understand the fun doesn't stop there. For now, I take whatever pleasures come my way. The door prize for chemo completion is I.V. disconnect. Untethered, unhooked, free to roam about as far as I can go in an hour and get back. That's right, there's a catch. You can't go very far or for very long, otherwise they put an APB out for you. Some insurance thing, I suppose.
For all intents and purposes, I feel pretty good. If it weren't for the plum colored, golfball sized hematoma above my clavicle and the plastic dredlocks coming out of my chest, you wouldn't know I was sick. There are less obvious side effects, but I don't know a lot of you well enough to talk about them. Now that I've completed chemo, we wait for my blood values to fall. When they get too low, they infuse more blood or platelets as needed, to bring them back up. I know, the myth of Sisyphus comes to mind.
The hardest part of this, recently, is finding food that doesn't make me nauseous. The choices aren't very auspicious. Hospital food is every bit as bad as you've heard. But, somehow I've found some item or combination of things that have given me sustenance Sweets, apparently, I can eat in abundance, but that too has side effects ( graphics deleted) in the end. There are a few things as of yet that bring me down. I'm grateful for all your cards and emails ( I love cards) that imbue strength and determination. I look forward to them everyday. Finally, I must say, that without my wife's help, I wouldn't get through this. I'm eternally grateful, ...forever and ever. Love Tom.