Friday, February 20, 2009

Musings from a cancer patient

This is a collection of random observations. The continuity of thought is a little more intimate. I began to explore how I felt about the new world I had been relegated to.

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 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...

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