As in a tasty mix of talk

Saturday, February 27, 2010


with copious bowing and scraping to Allen Ginsberg

I see the best minds of every generation metastasized by madness, running burned slashed and poisoned through doctor ghettos with desperation prayers for a cure that never comes,
angelheaded children with bald heads begging for the heavenly connection to feeling better for just one night, just one hour of release from the clinking, clanking machines of half-life, so Mommy and Daddy will stop crying and the doctors will stop telling lies
to hollow-eyed grandparents waiting in darkened rooms smoking one last cigarette before the ambulance blasts its banshee song, and delivers them to operating rooms
where every last scrap of poetic sexual bravado and emotional mercy meets the tip of a scalpel and dies,
and dreams of lingering youth float across the tops of burning roofs where even the fire escapes collapse
while bodies fry, and insurance perverts count heir money count their money count their money tapping clipboards made of human hopes and needs, skin stretched tight across their holocaust of greed,
and priests stand on corners rattling thin tin cups, taking contributions for the cause the cause the cause collecting millions, billions, trillions of dollars to save us all like Salk did for a dime, before compassion dried like tears on homeless faces invisible to the suburban mass of dittoheads turning their radios up and thumbs down.

We who walk hospital halls in paper gowns hiding insane beliefs that stepping up to the programmed punishment for our crime of cancer will redeem us, crack open the door to a heaven where we will celebrate the Gods who metastasize their arcane tests of worthiness, wearing hair shirts announcing the Avon 5K for Cancer, the Susan G. Koman Walk for a Cure, the Puscilanimous Scam of Pretending to Find a Cure, when the misery mills better suit their justified ends, and from somewhere far, far away we hear the money jingle as we lay down to submit to fate, dutifully chastened, spirits professionally broken, grinding our teeth because we think we hear the sound of champagne corks popping through the walls, of cruiseliners booming on their way to Dubai, to the Senate Supermarket, to Rodeo Drive, to the fire sale in carpeted rooms where Picassos hang and lobbyists smile at their own reflections in the bloody sheen of Mission Accomplished, inborn rights abolished, selling miniature pink and blue coffins and reusable urns that are converted to wine carafes after the ashes are scattered and the mourners gone, quoting Ginsberg’s Howl that “I'm with you in Rockland where you bang on the catatonic piano the soul is innocent and immortal it should never die ungodly in an armed madhouse.”
But it does.

I rise like an angry Phoenix from the ashes of everyone's treatment, transformed by living within futile systems, ennobled by clinging to thin shreds of beauty still visible through drugged-out, impossible days, choosing between more of the same insane choices for staying alive to feed insurance schemes, and see from this perspective how the healthy are twisted with fear, too delicate and trembling to demand a cure for a lynchpin disease that twirls the world on its scaly finger, to insist upon the defeat of a monster that may never darken their lives, even though its steamy breath permeates liquid walls between home sweet home and right next door, and I say I understand the fear the fear the fear but hear this while I can tell it: we will drift between the boundaries of heaven and hell until we use the cure that is out there in X-Files black and white, curling in hard-copy folders, waiting to be invited into the light of a brave new wave of implacable life.

Sunday, February 07, 2010

Every Day Is Saturday

There is no substitute for adventure. You’ve heard this adage since childhood, right? If, like me, it resonates with your impulse to bypass that office job and head for Europe with a backpack, you probably assumed it originated from one of those pillar-of-thought guys like Socrates or Plato or Aristotle.

Not so. It was penned by the otherwise unremarkable, 20th Century journalist Mel Ellis, who gilded his lily of a phase by continuing to write: “It is as fundamental as hunger. It is as compelling as love. It is as necessary as air. It is as exciting as Saturday.”

We get it, Mel. But adventure isn’t necessarily a set-your-hair-on-fire and jump in where angels fear to tread event. It can be multi-faceted, tempered with an impulse for self-preservation. It can be an effort to save your life instead of risking it. That’s how I see my participation this past January in the Immunovative Clinical Research FDA-approved cancer drug trial. For me, it really was as exciting as Saturday.

I have great friends and family members, so none of them tried to talk me out of choosing the drug trial instead of leaving my fate in the computerized hands of City of Hope. But I know that some wondered why I was willing to defy conventional medical protocol by becoming a drug trial subject. Well…

For those who are too busy to click the Immunovative Clinical Research link to learn how the trial works, here’s the “For Dummies” version: It educates one’s own immune system to recognize cancer cells and kill them. If this sounds too good to be true, or too easy, be assured that it is a truly radical approach. It is the only drug trial currently in existence that seeks to train the body to kill its own cancer cells instead of poisoning them (and the host) with chemicals. Not surprisingly… there isn’t one dime of American drug money funding the trial. That, for me, was a no-brainer inducement to participate.

The trial organizers keep a low profile. I found Immunovative Clinical Research accidentally, while researching cancer-suppressing herbs on the Internet. I clicked their modest link and went straight to the fireworks: The creativity and stunningly simple logic of the Immunovative concept triggered my sense of adventure and, yes, stirred my hope. I admit that hope is not the most objective filter for decision-making. But neither is despair.

Some of you may remember my recent poem (the prior post on this blog), “There are no plastic bottles in heaven.” During my initial interview at the Immunovative Clinic, when I quoted this line to Dr. Har-Noy, the M.D. who conceived the Immunovative method and designed the trial, he looked into my eyes for several audible clicks of the second hand on my watch before saying, “My hope is that you write many more poems about your life on earth.”

Know how it feels when you are stopped short by an unexpected display of beauty, such as a smog-free night in Los Angeles when a few fierce stars shine through the light pollution? That’s how Dr. Har-Noy’s compassion made me feel. When is the last time a doctor inspired you with his or her empathy? Yeah, me too: I was six years old and got a sucker for not crying after my shot.

Unlike the many clinics where I have undergone cancer treatments ranging from surgery to radiation to chemotherapy, where I have shared space with brave but often waxen souls who looked more like their own ghosts than patients, the atmosphere at Immunovative Clinical Research is upbeat, as if everyone is participating in a hopeful new approach with the potential to revolutionize cancer treatment, eliminate the misery of chemotherapy and save countless lives (we are). The doctors and nurses and staff laugh a lot, and interact with patients on a frank, personal level. (I know which staffer hides a tattoo and where. I know who calls President Obama President Obummer. I know who conducted impromptu philosophy classes for his college frat bros so they could pass mid-terms and remain on the football team. I know who has a photographic memory and could unexpectedly repeat my idle reference to Burbank as “Borebank.” I know who comes in at 4:00 am to answer emails. I know who works until midnight. And everyone, and I do mean everyone at the clinic, knows how sensitive I am about my weight, and politely deducts two pounds of “boot weight” when I step off the scale.)

One of the things I most appreciated about the clinic is that I never felt like a number there. (Although, I later learned, I DO have a number: I am the 25th subject). Not once did I feel rushed. The intake orientation alone lasted five hours and answered all of my questions, including some the doctors encouraged me to ask. And I never felt hustled. As part of the orientation I was repeatedly asked if I understood that I had other treatment options. And, just to make sure I didn’t proceed because I thought I had nowhere else to go, the clinic required me to visit an unaffiliated local oncologist to discuss those options.

Although potential side effects were disclosed at each step of the trial process (fever, chills, aching muscles or joints), the effects I experienced were so benign that an Alleve and a good meal made them go away. Word, brothers and sisters! (During the trial I think I also re-grew most of the hair I lost while taking oral chemo last November.)

If all goes well and the trial succeeds, I will announce well in advance the date of my appearance on the Today Show Special that proclaims a cure for cancer (I will be the one wearing homemade jewelry and smiling like I have just won the Powerball Lottery). If it doesn’t, I will move on to the next life-affirming option for treating my disease, which may be a second go-round at the clinic. If nothing else, participation in the trial connected me to a level of personal courage I didn’t know I possessed: I had to trust my instinct that I could recognize a promising concept when I saw one. I had to overcome my misguided belief that courage consists of “taking one’s medicine,” as in submitting to the punishment of chemotherapy, as if there were some inherent virtue in suffering. (There isn’t, no matter what the Pope says.) I had to say, “no thank you” to the established medical protocol for cancer treatment, not caring how the computer at City of Hope rated my decision. I had to stop being a good patient and become a bad girl, one with the stones to choose adventure.

I will know by mid-March if my immune system has responded to the treatment by “reducing my tumor burden,” a cool, clinical phrase that sidesteps the assertion of a cure. So, how do I feel about my medical adventure so far?

Like every day is Saturday… even Monday.

Dr. Har-Noy, this poem is for both of us:

There is no sane reason to
Fall in love again, to sail to that
Flat edge of earth where
Touch and desire still shimmer on the
Bent horizon, and the drift of
Someone else’s breath feels like
Everything, yet nothing at all. But
I can’t ignore him, the way he
Possesses his nature with
No intent to impress, how he
Overlooks his own virtues as if
He is comfortable without them, but
Always notices mine. I love the way
He suggests I open a door between
Memory and this instant, dismisses
the prejudice of mind over flesh, so I
Remember what any genius but no
Madman could ever forget: How
Love reinvents the world, how it curves
The dead-end edge of not enough into the
Starrier sphere of tomorrow,
And lets the flattened day slip away.