JOURNAL OF A CANCER YEAR: (Excerpts)

Pain has an element of blank;
It cannot recollect
When it began, or if there were
A day when it was not.

It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.

-- Emily Dickinson

Dear Readers:

Today, July 15, 2008, marks the one-year anniversary of this blog. Last night as I was drifting off to sleep, a question came to me. Did this really happen to me? I swim, I lift weights, and I’m healthy again. Was it me who was diagnosed with cancer and underwent chemotherapy? Of course, I know this happened, but a curious thing about being healthy is that the mind expunges memories of fear and pain and displaces them with the joy and happiness of being alive. But it is also true that gaining an awareness of the distinction between facing one’s mortality, that fragility and uncertainty we are hard-wired to deny, and the blessedness of understanding life is not to be taken for granted, provides a more expansive understanding, and appreciation of being alive. So, while in some ways it’s hard to believe I went through this, I also know that this can really happen, and that rather than being just a trying memory, pain and sickness are very real aspects of living that none of us can escape. I don’t say this with the intent of sounding grim or pessimistic, I say it as someone who is grateful for a life lesson that showed me survival is always fleeting, a temporary aspect of being born and dying. In truth, I was diagnosed at a time when I was psychically drifting, or better perhaps, running from myself without looking back; but suddenly, and it was only a matter of time, disease tripped me up, and I couldn’t run away from myself anymore. This blog is the raft that a once cocksure drowning man has clung to in a world where doubt is the only certainty.

Randy and Kirk Osoinach, Cross Village Beach (7/11/08)

Here are some excerpts:

I suppose I should talk about my disease: about prophylactic chemo injections that reinforce the blood brain barrier; about gazing at the galaxy of twinkling tumors that is me; about the unknown compatibility of the Rituximab and Hepatatic deities; about gig-friendly self-injectable Tour de France blood enhancers; about the distinctive differences between bone and bone marrow; about quixotic hopes and experimental studies; and about wooden stakes through the hearts of lymphomaniac vampires. (7/20/07)

We don’t really believe that “shit happens” philosophy. Admit it, you asked for it. You brought this on yourself: He smoked, she drank, bad diet, immoral living, overweight, philanderer, atheist, communist, non-Christian, Christian, pacifist, agnostic, Satanist, homosexual, out of tune, and so on. The cancer personality persists in a culture of psychology. It’s the ominous, opposite side of the pop culture coin of the realm: the power of negative thinking. I’m a cancerous being; my thoughts and habits are malignant; I’m diseased. Self-Help, the New Age Gospels, they can be of no help without asking, why me? (The Existentialist would say, why not?) Curiously, we don’t adopt this sensibility with animals. No one asks why Poofy died. (7/30/07)

Did I mention that my hair has begun to fall out, not in giant clumps or anything like that, (at least not yet) but in gentle wisps and strands. (8/7/07)

Last Friday at midnight, after having been up for twenty hours straight, I looked out over a crowd of happy dancers reveling to the music of George Bedard. I was tired and angry. A feeling came over me that I had yet to experience: “I’m exhausted and sick,” I thought. “Why don’t you all go home and let me do the same?” But then I realized something: Why shouldn’t they all be having fun? They don’t know how I feel, and I can’t blame or resent them for my misery, or for being happy, or for wanting GB&theKPins to play all night. We jog, eat granola, do yoga, etc., all with the idea of staying healthy, but when it comes right down to it, we take our health for granted. And why shouldn’t we? We’re hard wired that way, we’re programmed to survive, and by golly that’s what we’re going to do. And that’s a good thing, because when the shit hits the fan, and the cancer, gout, hemorrhoids, mange, mouth sores, and aching gums come a courting, it’s best that we didn’t spend a lot of time anticipating them. There lies the way of psychotic anxiety at best, and madness at worst. But while it may be good that we never truly contemplate our own mortality, we are ill prepared when the axe comes down. When the specialist walks in bearing grim news, no one wants to hear it. (8/10/07)

The emotional swirl of being sick, researching the disease, bringing attention to the cause, and lobbying for better health/cancer care is slowly fading into the mundane, day to day reality of morning elation, mid-day optimism, late afternoon malaise and evening resignation. Life goes on. Someone gets cancer, there is a pause in their worldview, and life moves on, with or without them. I’m 10 days into the second cycle. So how’s it been? While I only have the first treatment’s experience to draw upon, I can draw some conclusions. The ten day point signals the beginning of an emotional period in which the late day fatigue and stress of life (finance, family, romance, health) conspire to thwart all optimism. The depressed feeling that one is ill becomes inescapable. Not accidentally, the 10 day depression point immediately follows the cessation of the 4 day steroid regimen. The energy affected by the prednisone gives way to an emotional crash where, in the words of Hamlet, life seems “stale, flat, and unprofitable.” Yesterday my tongue and throat were sore, the gums and mucous membranes in the mouth, rough and irritated. The same crazy bald-head in the mirror who’s ready to save the world now sees through sad eyes. Nobody knows what it’s like. (8/24/07)

I had a bad night. Around 4 PM yesterday I began to feel feverish. I had sweats, cold chills, and my temperature was 101….Allow me to briefly explain what I mean by “bad night.” Finally, the fever, chills, and night sweats predicted by the literature on chemo and its side effects were upon me. Along with the drenched linens and fever dreams comes that futile attempt to use those same wet sheets for warmth. At around 5 A.M. the fever broke. (8/29/07)

The dread of death and the overwhelming nature of life, that tragic dichotomy of being we strive to ignore, to neatly compartmentalize, manifests itself most concurrently in that moment when one’s mortality is made concrete, the moment of diagnosis, the close of the real. The collision of mortal dread and life’s absurdity and fragility produces a chain of recognitions that are otherwise impossible, unthinkable, and unimaginable. Why, because abstraction is the balm of denial. It’s not me this is happening to, it’s that gaunt, bald woman crossing the street with her walker. And then it’s you with the swollen lymph glands and night sweats. (10/25/07)

Infusion number 4 served to contradict this disease of reckless romanticism by refusing to conform to Oscar’s expectations. During the second of the three-week treatments, Oscar’s temperature began to rise. His body began to shake, his bones began to ache, and the sweat poured from his feathers, drenching the straw below his perch and mightily worrying his fellow owls. After making it through a feverish night, Oscar reluctantly called his vet (please excuse my intermittent use of doc and vet) at which point he was ordered to the emergency room and given a 3 hour infusion of antibiotics. The throat was sore, the toes were numb, and the bones ached, but he decided if this was as bad as it got, no problem. Now one of his owlish problems from the beginning was his insistence on carrying on as if he wasn’t sick. Where other sick owls had pared down their activities to accommodate their infirmities, Oscar was adamant on living life as usual. Where he had always been the lead hunter as they tracked down mice and snakes, he saw no reason to change that now. If a guard was needed to alert the flock to hunters, Oscar was the Owl for the job. The trouble was, Oscar’s affliction was of a different mind than Oscar. As his beautiful feathers slowly fell out he could no longer escape the inevitable side effects of the medicine, nor could he give up his alpha-owlish qualities. He lost his speed, stamina and, perhaps most important for an owl, his shrewdness and never failing wisdom. And so came the fourth chemo. With the exception of the numbness spreading from his wings tips to his talons, he had an easier time of it. True, it was painful for him to achieve his daily constitutionals, and the mangier and mangier look he was displaying were a blow to his owlish pride, the actual fact of a brief respite from the accumulating side-effects were a welcome relief. Number five was next. Make no mistake about it, Oscar was still intent on leading the parliament, while the spirit was willing, the flesh was weak. His throat constricted to the point that his mighty call went from an owlish pride to a dovish coo. His garbled sounds became unintelligible to the other birds and he tried to keep his larkish tears to himself. He could no longer hide the fact that he was a different bird, an ailing owl. He tried to avoid making droppings of any kind to avoid the burning and murmured sympathies of the other owls. (11/21/07)

Cancer is a humbling experience. One of the things we have in common is the way our ordeals have made us aware of is why we love others, why judgmental attitudes, anger, and negativity are wasted energies/emotions. A silver lining to the cloud of my cancer has been the kindness I feel toward others. I think those around me see it and return the feelings in kind. Goodness comes to those who are good. (12/17/07)

The whole camp, about 200 strong, lined up to watch the ritual. They were dressed in shabby orange work suits. Their faces reflected a kind of hopelessness that can only be described as depressing. A look of despair. We, the loved ones who showed up to collect our men and women children, looked on as the sound of marching feet and shouted cadences slowly came within earshot. M.D.O.C. (Michigan Department of Corrections) guards, dressed like low budget storm troopers, looked on as the graduates stepped out, identified themselves, stepped back, and stood at attention. The last question asked was, “Are you ready to go home?” A loud and clear ”Sir, yes sir” was strongly echoed in unison. With that, the Trainees were dismissed into the arms of their families. Tears ruled the day. (1/15/08)

Curiously, when in the final throes of living the chemo, I wrote less about the side effects than early on. One of the less painful, but madly frustrating, consequences is neuropathy. What happens is this: nerve cells are wiped out and muscle atrophy sets in. In practical terms, everyday living is affected in various and mundane ways. Some examples: the resistance that must be overcome in turning over the car’s ignition is so great as to require either both hands or a fist-like grip; the quickness required in sliding the card in and out of the gas pump’s credit card reader is so compromised as to necessitate a trip inside the station; holding the guitar pick with the thumb, index, and middle fingers is only possible for brief periods; buttoning clothes becomes difficult to the point that one either leaves the garment fastened enough to slip it over the head, or enlists the aid of a confederate to button the shirt. Tying and zipping also present challenges that I’ve discussed earlier. (2/24/08)

Does the fact that others might be secretly happy that they can’t get cancer, mean that I might secretly wish that they had it. After all, common wisdom tells us that it is not contagious. The word “contagion” has a repellent ring. We take it as an article of faith that cancer is not infectious. But if cancer is not a virus, some scientists see an association between viruses and some cancers. Similarly, chemical exposure has been linked to cancer, but we don’t think if it as a kind of poisoning. Unlike renal and coronary diseases, which are marked by organ dysfunction, cancer is the result of cellular reproduction gone haywire. What’s interesting is that the single tumor-of-origin is produced by the victim and not by some outside source. These replicant mutations, cells run amok, are obsessed with wildly reproducing to the point of ignoring the host organism (yes, like a parasite). Which brings me back to the hidden glee of the contagion free. So far, medical research confirms the comforting belief that cancer is a solitary phenomenon. It is the self-originating character of the first rogue cell that sustains our faith in science. And so, too, do cancer’s victims suffer in the solitude of knowing cancer can’t be caught, it is ultimately, and inexorably, the victim’s fault. (3/19/08)

For me, having cancer has been an epiphanous, depressing, exhilarating, distressing, and, to coin a descriptor of Anatole Broyard, “intoxicating” experience. Broyard’s point is that the diagnosis is analogous to be inoculated with a dose of truth. The abstract, and untenable, idea that death comes to us all is banished and is replaced by the knowledge that existential enlightenment is only achieved by embracing our finitude. What Broyard calls, the ‘nausea of the uninitiated’ is replaced by the comfort of rejecting homey truths and ontological delusions. And with this curious comfort comes the intoxication of a heightened desire, which in turn produces a lightheartedness, and hence, reproach to reality. It follows then, that those dear to us who care, who rally around us like “birds rising from a body of water into the sunset” fumble with “pious and inspirational” conversation, with sobering responses to our refusal of seriousness. Over time, the diagnosis directed my attention to the real, and has proved itself to be, as ironic as it may seem, salvific. My narrative has a beginning, middle, and end, and while I can’t predict future agonies, I am learning to accept that anxiety, like time itself, is ever fleeting. As the wisdom of the Lear’s Fool has it, the worst is never the worst as long as we can say it’s the worst. (4/23/08)

So, Shadow Hussein, why does god allow suffering? Well, Master, three reasons: 1) suffering is a test of character that results in spiritual redemption. For instance, when you suffer excruciating thumbnail pain after eating truculent pistachios, the Man-Whore God is punishing you for drinking too much. Or say, when you’re the Magic Poetry man, and you convert to Catholicism, that circumcisional pain at losing your squid ring, or, if you’re Jewish, Shmuck, is redemptive. Your throbbing penile discomfort just got you into heaven, buddy!; 2) Suffering is punishment, ass-wipe. Remember that time you puked on me? That’s why god gave you cancer. And what about that electric shock collar? That’s at least worth a dose of unbearable anal pain, the red-hot Phillips-head up the ass feeling you know you love. And how about the time you put the cat in the dryer, she didn’t forget that. That’s why you couldn’t swallow, and talked like an idiotic neo-teenybopper with multiple tongue rings. I just sent our electronic bids press pack to Chemofest. Will everyone who took the brown acid please report to the infusion center. Shane, come back; 3) You silly-billy, suffering is a sign of god’s impending return, where she will vanquish evil and establish her kingdom of peace and harmony. At the last judgment, she’ll throw the Bushwacker into the big lake of fire, and restore all them dead babies he’s responsible for killing. I’m working on writing a song about it right now, “Season of the Chuckys.” Wait a cottin-pickin minute, you write songs, Shadow? Yes, I do. That’s why I’m changing my name from Shadow Hussein to Dog…I mean, Cat, Stevens.

That’s enough…. (7/1/08)