You're…numb…then, that’s for sure, fear long-since abated. Cancer and your body will do that for you. Even abject terror, or the most frightening thought of a man's life, must eventually give way to something approaching sleep.
You don’t know if it's all the drugs you've been given, or simple relief over finally taking the first step towards discovering what it's been that's kept you exhausted, never hungry, weak as a last breath for days upon days upon days. But you sleep for four solid hours and awake finally to an apparition.
A man stands naked at the foot of your bed, staring at himself in the mirror half a coffin's-length away. From the back he resembles the sun-shot corpses you've seen in ditches on the sides of foreign roads. There's a pair of radiation targets tattooed across his shoulder blades. His skin is swollen, red, desquamated by x-rays powerful as the sunrise on the day you die.
He sets about his ablutions, swabbing clean, as easily as you brush your teeth, a tracheostomy fixture—a silver disk, like an exotic piece of Chinese currency pasted on an uncooked steak—that neatly bisects his throat. The swelling and discoloration of his neck and jaw would terrify any child and not a few adults. There are lesions all about his face, purple, emerging like Brussels sprouts imagined by Van Gogh. His cheeks are the size of regulation softballs, red and yellow and veined like an old Martian's.
But for all of this, he has the tall and crew-cut bearing of a soldier keeping himself clean in the field, and his eyes are identical to your dead father's. His reflection nods good morning, and it occurs to you that in some strange and important way it is you yourself that you behold.
The thick unpleasant smell that fills the room you share brings it all back, the events of the past two days: The ambulance ride to the big V.A. hospital in West L.A. after a surprisingly brief 10 AM consultation. The long sojourn in the ER; vitals, EKG, confusion, admission papers, a dinner of Teriyaki chicken and peas.
230605 - 1200 hours
There were three primary care physicians, a trio of oncologists, the chief of staff, and half a dozen blood tests (bottles—not vials—the size of extra large Red Bull cans). A pair of nurses failed to push a tube up another man's nose. They shoved it down his throat instead. He wore a Mighty Ducks hat and resembled Bruce Dern with a blonde 60's 'stash.
There was Jerry, your first roommate in "B" Pod/Intake, a dyspeptic Navy corpsman, younger than you but seemingly older. He drank from a half-gallon bottle of something he said tasted like salt water. His colon was bleeding he said. At one point he disappeared and you didn't. It didn't.
The past, present, and future somewhere somehow became confused. Time, in other-worldly alternation, both flies—a jet plane, truly—and lies there, like an exhausted and self-medicated whore.
Look at your .9% sodium chloride drip. A sliver of moonlight falls photogenic along its smooth plastic swell, Penthouse Pet of the Month-style. Welcome to the Drip Trip, G.I. Needles are our friend. Dehydration is not an option.
Television sets hang from ceilings everywhere. The Senate Armed Services Committee holds hearings. Rumsfeld sickens you, one who is already sick. You want to destroy him utterly, one-on-one in a no-holds-barred full-contact flurry of retribution. Like Robert Strange McNamara before him, half (or maybe all of) a lifetime ago.
But divinity smiles upon San Antonio who win the NBA finals in a beautifully-played seventh game.
There's a Heparin injection to thin the blood, back of the right arm.
Allopurinol, white tablets to clear the kidneys as lymph cells disintegrate and evacuate. Lysis. Another new word in a forest of new words.
You choke horribly, fearfully, helplessly, on the first allopurinol, vomiting into a towel placed by a thoughtful nurse. Your biceps are clenched so tight they're sore in the morning.
Sleep. They give you something for sleep, all the time, and magically one day turns to another….
240605 - 0600 hours
Look at the little yellow plastic machine nurse Kathy has given you to keep your lungs clear. The sun falls full upon it, expensive as a Pentagon toilet no doubt, like possibility, like it's the One True Path. Inhaling, barely pulling 1200 ml when a healthy adult your size hits 3500, you are depressed and bewildered. You have never been weak before, except in the presence of women you've loved.
Sonogram, a cold breakfast. Plastic eggs. Well into another bag of sodium chloride.
There's thirteen solid hours of activity; being wheeled by black men in purple smocks through the huge facility, past veterans of the Battle of the Bulge, Inchon, the Central Highlands, Grenada, Tora Bora, Fallujah.
Waiting. Always the waiting.
Three chest x-rays. A Peripherally Inserted Central Catheter (PICC line), introduced into your left arm by a beautiful woman in dreadlocks, snakes through the basilic vein into your heart. Another x-ray assures it is not inserted too deeply, but it is, and—like Penelope herself—the beautiful woman waits, on her own time, unpaid, on a Friday afternoon, during rush hour in Los Angeles, to tug that tube ten centimeters north. You feel nothing but admiration and gratitude.
Time. It all takes so much time.
An Echocardiogram lasts an hour. The room is subterranean and cold. You thank God your heart is strong, like your stomach.
700 ml of fluid the color of flat homebrew is removed from your left pleural cavity. The splendidly able pulmonary fellow, Dr. Chang, intones to his attentive interns as his canula scrapes your ribcage: "I'm a real bastard."
Vitals are taken half a dozen times throughout the day. Blood pressure. Temperature. Respiration. A hundred beats a minute resting pulse, like you've been running a marathon on empty. 80% of your lung capacity is gone, like that of a new old man now, waiting for Charon's ferry, running early on the return trip.
At some point, back in the room you share, Jerry discusses his blood-streaked watery bowel movements.
It's tough being sick.
And somewhere there in the middle of this river of change, doctors descend like doves with a diagnosis, thanks to a ten thousand dollar bone marrow biopsy from the week before:
Stage-4 Indolent B-cell
Follicular Non-Hodgkin's Lymphoma.
And here we are, like a scene from Firesign Theater:
"A" Pod. Chemotherapy. The Real Deal.
There's a different brand of nurse here, somehow, though it's hard to put your finger on it exactly. They're short-tempered. Busy. They're short of equipment. The ice machine doesn't work. You've been here an hour and a half and you still don't have a pillow.
"Captain Newton! How are you feeling?!"
It's the dumb-stump nurse, calls herself Bettina, the only one you don't like, the lazy one, the one who told you she doesn't know which drug they've given you affects blood sugar. (It's Prednisone.)
Captain Newton grunts through his tracheostomy, resigned as only a man in his condition can be. You notice that Captain Newton has TWO PICC lines, one in his arm, like yours, and a big mean ugly one high in his abdomen. They must be shooting him up with some pretty special stuff.
Bettina squeezes her more-than-ample Trinidadian booty past your bed, her crash cart full of pills, hypos, crowned with a wireless laptop. She draws the curtain for privacy and speaks to Captain Newton the way some people talk to the deaf—too slow and too loud.
The game is going bad. Freeway series. Cesar Izturis, amazingly, has dropped a fly ball to ruin Jeff Weaver's perfect game. Jeff Kent boots a ground ball to ruin the shutout, and the Angels take a one-run lead.
You scribble in your notebook like it's the last thing you'll ever write. Your Mont Blanc ballpoint, a Christmas gift from years ago, appears to be dying too.
Bettina has finished with Captain Newton, who's lying quietly. Morphine is such a blessing. They should give terminal patients as much of it as they need. Really. What's a little addiction against a painful death?
Bettina tells you they could have gotten started with your chemo hours ago, but they're waiting on the Benadryl. Benadryl?! Can't you, like, pick that up at Save-on?
While you (yes) wait, you watch the Dodgers get taken apart. It just hasn't been your year. McPherson hits a three-run homer and it's 7-0 in the eighth as the party finally gets started with a Benadryl drip and 2 Tylenols at 9:15.
You are, you're told, fortunate. Your particular brand of (say it loud) cancer responds beautifully to a remarkably-engineered monoclonal antibody called Rituximab (Rituxan), which was developed through stem-cell research in the 1990s. (Leave it to you to come down with a disease that has political ramifications.)
Rituxan was at first considered a sort of magic bullet, and it was given to patients all across the cancer galaxy, with initially disappointing results. When the data were finally collated, it became obvious that the drug attacks the CD20 protein on B cells, which are a type of white blood cell.
Lymphoma patients (people like you and Charles Lindbergh and Jackie Kennedy Onassis and Roger Maris and Mickey Mantle Jr.) have healthy and unhealthy B cells existing cheek by jowl with each other. Rituxan connects to the CD20 protein in both types of B cell and basically smothers it. Scientists believe that the binding of Rituxan to the protein may activate a "switch" in the immune system that causes the cell to kill itself. The idea is that the body may eventually "learn" to do this on its own. It's an exciting time to be a cancer researcher, but for the Christian right-wing lobby.
Rituxan, in really fortunate patients, may be the only chemotherapy necessary. This is good news, because there are virtually no side effects for those who tolerate the drug well in the first place. No nausea. No vomiting. No hair loss.
Traditional chemotherapy utilizes drugs that target fast-growing cells, which include cancer cells as well as those found in hair follicles, the stomach lining, and the inside of the mouth. It's a baby-with-the-bathwater approach to treatment, and some things about it are predictable—your hair falls out and you're often sick as a Mexican Hairless in Fairbanks in February.
Drugs like Rituxan are at the cutting edge of modern cancer treatment, and it is instructive to consider their modus operandi: they embrace the specific, individuated problem (like a lover might embrace a troubled beloved, let's say) instead of blasting, like a homicidal maniac, every damned cell in the human body that moves fast (like, say, the U.S. Marines in Fallujah). Yes. Instructive.
But enough liberal jabber. Rituxan's no magic bullet for you because you're Stage 4, end of the line, tumors in both lungs, your spleen, and your liver; cancer in the very marrow of your bones. You're going to need a more traditional cocktail of drugs, which includes
- Cyclophosphamine, an alkylating agent which slows or stops the growth of cancer cells. Its use is commonplace in chemotherapy.
- Vincristine, which is also used for treating leukemia, breast cancer and lung cancer. It's a powerful little drug with what one might consider a poetic name. It has about a dozen side effects though, ranging from cramps and constipation to hair loss, susceptibility to infection and nerve damage.
Finally comes what may very well be the most over-prescribed drug in all of medicine:
- Prednisone. A corticosteroid, Prednisone is used to treat arthritis, skin disorders, kidney disease, colitis, asthma, and allergies, among other things. A quack prescribed some to you once, for eczema, and you wound up in a Wilshire Boulevard intersection behind the wheel of your new Mercedes, wondering how you'd gotten there.
To give us all an idea what prednisone does to you (besides, one hopes, shrinking cancer cells), on the days you use it, you write ten or fifteen pages. Your output on a good day, without Prednisone, is more like four.
This may very well turn out to be a perk: it ain't a bad thing to write a lot, you know? Especially when time becomes foreshortened and you can hear the ferryman's bell in the fog.
Anyhow. You've been sick, and you're ready for all these drugs. The Bad News is: the Rituxan will take at least six hours to administer. They've started the drip at some time after ten o'clock at night. You're gonna be up all night, loaded, without even the shadow of a love to hold your hand.
And so it goes in a busy cancer ward in a big Veterans Affairs hospital that's had its budget cut every year that George W. Bush has been in office. (During a WAR, one might add. It doesn't take a Democrat to figure out what's wrong with this picture.)
With a Rituxan drip, they gradually increase the speed of the infusion. About an hour and a half in, after a couple of speed increases, you're feeling practically euphoric. Mostly, it must have been a matter of help at last, thank god, help at last!
But around midnight, things start to go south. You get a flushed feeling in your face, like you're allergic maybe. Then the chills hit. You begin to shiver, like a dog who's crapped on the carpet for three nights running and's been banished to the backyard in the rain. Rigors.
This goes on for over an hour. You're OK with the whole thing though; you'd been warned about this reaction and were prepared to ride it out, because you really wanted this miracle drug.
Throughout the episode, the night nurses chatter in the hallway like mindless birds. Captain Newton has The Tonight Show on. Too loud. This is Jay Leno vampire chemotherapy, and you might laugh out loud if only it were Owen Wilson here in this bed, with Vince Vaughn waiting in the wings to make his entrance.
The rigors are odd. No chills, no immediate perception of cold and discomfort, merely the strangest sensation of trying to make sure your heart continues to beat regularly in surreal syncopation to your body's outward arrhythmia.
But suddenly a new face appears at your bedside. Tuh Dah! The Intern. It's his first night on the job. (Memo to self: don't get sick the end of June. All the med schools in the country expectorate their latest products right around Bloomsday. Thus ensues the stuff of nightmares.)
This kid is scared, you know that. Which makes two of you. You catch a glimpse of him reading the brochure they've given you about Rituxan and you figure: no good can come from this.
Sure enough, after a ten second consultation with the resident (who looks pretty new too; she doesn't even stay in the room), they pull the plug. It's one-thirty AM. You'd've done the same thing.
250605 – 0700 hours
The upshot, however, is that you feel great. You are relaxed and breathing well for the first time in a month. Your primary-care physician, pretty Doctor Sheinkopf, comes in around eight AM and doesn't seem perturbed by the night's events.
Then the rest of the "team" drops by around 10:15 and, ironically, remarks "We don't know too much about these cancer drugs."
Captain Newton nods solemnly after they leave. You decide you'll leave him a shred of dignity by communicating through gestures instead of words. Things go better that way it seems. Some things don't need words.
It is clear you'll be needing an oncologist in here ASAP, because you don't want them to chicken out on the Rituxan, which you irrationally somehow see as your only hope.
It's ten-thirty. Ding Dong School would've been over by now. Time and you and I are wasting. We've had French Toast, Sausage, Cranberry Juice, Coffee, four pees and a most excellent dump.
WE WANT TO GO TO WORK!! Why START at midnight?!
A new nurse comes in. This must be the weekend crew now. She has a Russian accent. She is nice. She loads us up with the preliminaries, the Allopurinol, the Heparin, a stool softener, a stomach relaxant.
Are they proceeding with the rest of the chemo cocktail WITHOUT regard for the failed Rituxan drip?
We've read in the LA Times that Arlen Specter has Hodgkin's. Of course, he's 77 years old. The disease was not well-explained in the story. He's got five weeks to go on his chemo, and continues his schedule as before. Of course that's Hodgkin's. Treatable. Manageable. Curable.
As we ponder the words curable and incurable, a new nurse arrives with a crash and informs us—despite what we've been told by the oncologists, basically that when complications ensue during an infusion of Rituxan, the procedure is to reinfuse at a slower rate—she has talked to our doctor and the word is she needs to get further permission. It's 11:30 AM on a Saturday. We have visions of plaid trousers on golf courses in faraway places containing the keys to our kingdom of health.
Why did they start so late yesterday? It's messing everything up.
This cancer is messing everything up.
Our sugar level is twice normal, the prednisone probably, says the Russian Nurse, whom we're beginning to like. "If they're using the Prednisone primarily as an anti-inflammatory, why is the dosage so high?" she asks, half to us, half to herself. "500 milligrams? It seems like a lot."
All we can think of is how many pages we'll write, how many typos we'll be catching for days later….
The Russian Doll gives us two units of insulin. Our blood sugar is up to 195. Anything over a hundred is abnormal.
Captain Newton, our Chemosabe, has been surprisingly quiet all morning. Asleep, mostly. Now, four VERY YOUNG doctors, female all of them, come in and tell him they need to draw some blood.
All hell breaks lose before our astonished eyes. Captain Newton is drawing crazy half-breaths, wheezing through his tracheotomy. There's blood streaming out of the picc line in his chest. The four girl docs, like a mercy-bent hydra with conflicting impulses, don't seem to be getting the job done, whatever the job ultimately is supposed to be.
I think, personally, I would have let the poor man sleep. They've managed to calm him, somewhat. He lies there, gurgling mechanically. They've called surgery to inquire what's up with the picc line. It's 11:43. I wonder how long THAT will take. There's blood everywhere, including the front page of my LA Times.
And—perfect timing in our surreal little world—our lunch has arrived.
Why are we here again?
A man who resembles a pipe-fitter, burly, thick-necked, wearing low-slung jeans and a teeshirt, arrives. His cell phone plays "Raindrops keep falling on my head," as he strides past our uneaten Salisbury Steak. He ignores his phone. The pipefitter speaks with the remaining Girl Doc like he knows what's going on. One might conclude that he must be a surgical resident with expertise in bleeding picc lines.
They don't have gloves big enough for him. He curses Bush's budget underneath his breath.
I have to pee. I need to eat my lunch. I need my Rituxan.
A couple of the other girl docs reappear. I may have nodded off. They wonder aloud if there's a clean shirt somewhere for Captain Newton. Apparently Captain Newton's son has arrived for a visit. Along with Newton's mother. "Not the best of timing," mutters a girl doc, as they leave the room in agitation.
Captain Newton shuffles back to the mirror, exchanging the briefest of exasperated glances with me. He's drenched in blood, like the ghost of Banquo. He swipes at his trach tube again, his particular fetish, I suppose. The idea of depending on such mechanical intervention is unpleasant to me. And BLEEDING from a tracheotomy tube?! What can that possibly be about?
Russian nurse comes in, bright and solicitous. She has a clean shirt, helps Captain Newton into it. He nods gratitude, proceeds to open the door to the head. And all is become quiet. I realize happily that Russian Nurse has somehow taken over the whole shooting match. Where are the other nurses? What can they be doing? And why aren't they on my case either?
So Bettina, the absent Latina RN, has finally started the preparatory drips. It's 12:45 PM. She tells me she's been hassling with the pharmacy over last night's Rituxan. Apparently the 750 mls is only good till 9 PM, and this infusion will take longer than that, because of yesterday's reaction.
I ask her if she had spoken with my oncologist and she says "yes, her and two others.” So what's with Bettina? My doctor's a "he?" Bettina seems to be the major impediment here today, this anxious Saturday.
As for Captain Newton, our Chemosabe next door, well, it's a conversation nobody should be privy to.
The latest Girl Doc has only been on the case in consultation with Newton's main doc for a week. Captain Newton had radiation in San Diego for some huge chest tumors. They are not shrinking as the Docs had hoped.
Main Doc has gone off the case and girl doc has—basically—taken over from close to zero. We can see the pretty curve of her back in the mirror as she sits primly at the foot of Captain Newton's bed.
“Did Doctor Brand tell you about this bleeding?" she asks matter-of-factly. Remember, Newton can't speak. He's got a tracheotomy tube where his Adam's Apple ought to be.
"Did he mention that this is how you'll probably die?"
I wonder if Newton is as flabbergasted as I. There is nothing but silence on his side of this conversation. No rustling of bed sheets or frantic telegraphic queries on the side-rails.
"I'm sorry," she says. "I didn't…well…if we can't stop the tumor's growth, it will basically take over those blood vessels, weaken them, and you'll bleed to death through your trach tube."
Happy Saturday, Captain Newton. Saturday, Bloody Saturday.
"Do you want me to talk about this with your son?"
"Shall I speak with your son separately?"
"Both of them?"
"You want to bring both of them in here?"
We can see the edges of Captain Newton's yellow legal tablet in the mirror, moving furiously as he responds to her.
Captain Newton's son enters. Bearded. Smart. Sort of a biker-type, but sharp. His grandmother follows close behind. She is 92, we soon discover, and sharp as a PICC needle.
Girl Doc lays out the scenario. Her phrasing is awkward, but she finally gets to the point:
"And we have very little hope we can shrink the tumors"—she interrupts herself; there's an awkward beat—"well, there's hope, there's always hope…"
"But I have to know," say's Newton's mother. "I have to know."
"Of course you do. And we're doing everything we can to keep him comfortable. I was worried that the bleeding was from the trach tube…he was sleeping so peacefully…and when we woke him…well, Dr. Bosch from surgery says it's just the skin, so we're trying to keep his blood thick, controlling the pain, so…that doesn't happen again.”
All in all, it's not been a very good half-hour for Little Girl Doc. Russian Nurse is in there now, noisily suctioning out something as we write. Docs are all theory. Nurses are blood and vomit and shit and piss. It's quite an amazing thing to watch.
Have we slept? What day is it anyway?
Captain Newton is back at our mirror, cheeks red as apples like an alcoholic chipmonk's. Are those purple pustules on his neck and chin a by-product of the chemo do you think? A different sort of tumor? The mind boggles at what can happen to the human body turned loose on itself.
Ah. Right. Remember now. Mom/Grandmom has come over to help him with the snaps on his tunic.
"Joe and Valerie walked Sam and Bill," she says gently. "He says she's a man's dog."
Thus the unthinkable impossible slips into the quotidian. Small talk is the only coping mechanism available to us now. The old lady helps her son back behind the curtain.
"Here's some mail for ya."
"She took that picture with her cell phone. She didn't have her camera with her."
"You know what Bill did? Spit all that avocado on the floor."
"And he slept in my bed last night, says the son of Captain Newton, who must have been dozing in the corner there out of sight. "He thinks that's his bed."
There's an uncomfortably long silence in the room. I can hear traffic in the corridor outside our room, life going on anyway.
"Wasn't such a great birthday this year, was it?" says Mom.
She sits erect in her chair now, just visible around the curtain. She has one of those aluminum canes with four little legs for support. It sounds like Captain Newton is having difficulty handling his newspaper. She rises and crosses to him, the way a new mom might rescue a toy tossed impetuously from a play pen.
"That's some guy in Washington that's going to pray for cancer patients," she says. Is she talking about Arlen Specter do you think?
And in comes Russian Nurse, hands full of liquids for Chemosabe. Lunch.
Late in the afternoon it has occurred to me that my Take Two Infusion (reinfusion) probably won't happen till Nurse Bettina's shift ends. I surmise that the stall must have something to do with, also, this being a weekend crew or some such. I'm reduced to the role of Observer/victim here. Ennui and unexpected human drama waddle uncertainly together before my eyes. A high point of the post-lunch wait has been watching Chemosabe—after finally tiring of no one answering his bell—WALK out to the nurse's station to ask for more pain medication. In personal healing terms, however, this has been a totally wasted day.
Maybe, though, this, this thing we're writing and reading and reacting to together, maybe this is the healing—this constant parade/dance/effusion/river of words across, over, on, down the page. Maybe this whole life has only been an exercise in penmanship, in preparation for words writ larger and better another time.
There's far too much mindless chatter coming from the nurses' station. These are personalities better-fit for harvesting coconuts and fermenting milky-white drinks served late in the day. These are not scientists or truly caregivers. They told Chemosabe to stop buzzing at one point. How can that be? Without him they wouldn't even have a job.
Chemosabe's watching All in the Family. I can't bring myself to turn up the sound. I remember the day I met Carroll O'Connor, somewhere between the end of All in the Family and the beginning of In the Heat of the Night, before his adopted addict son OD'd. He'd bought a book. He thought he was a "producer." He was behaving badly. Screaming at some poor production assistant who probably didn't want to be there any more than I did. Why do we treat each other so badly do you suppose? How do we recognize and treat these holes in our souls?
6 PM. A new shift has come on, three nurses from the B Pod, a world of difference. That silly goose Bettina left me with an empty IV for three hours. My PICC line was clogged and unclean, a new nurse tells me, shaking her head. Potentially disastrous.
There's a Nigerian medication guy on board now. A Guatemalan R.N.. An experienced Filipina nurse who exudes confidence and care. I feel like my chemo luck is about to change. Another Filipino, Manny, will be in charge of my chemo.
Twelve hours I've been sitting here today. Waiting. Noting that four women GIs were killed in a single attack in Iraq. Missing the Dodgers, I guess, cause maybe today's was a day game.
The Nigerian man tells me my prednisone dose is 100 mg, not 500, which is what they said they gave me yesterday. How does all this compute?
Carmen Basilio fights Johnny Saxton for the Welterweight Championship in Syracuse in 1956. I believe I saw that fight the first time, as a kid, though maybe it was one I watched when I did that documentary on Latin boxers. I always liked Basilio.
Chemosabe likes boxing too, he lets me know with an enthusiastic nod. And it's plain to see we're both in fights right now, so that may have something to do with it. He's throwing up like crazy, though, in really bad shape. I think maybe he needs to be in some sort of ICU or something. At least watch him, you know?
What a difference! At ten of nine, Manny (Emmanuel to his momma) starts the damned Rituxan drip. I become aware that Chemosabe's got some uncontrollable diarrhea going, poor bastard.
The Dodgers are down 3-1 in the 6th. This new young Angels pitcher, Santana, is throwing a one-hitter so far. A beautiful job.
Spots are beginning to appear on my face. My back is itchy. So the difference with the infusion tonight is we started at 25 mg instead of fifty and increase 25 every half hour instead of fifty.
But this definitely feels like a reaction. Reactions to a drug that is supposed to kill cancer cells is, I suppose, a good thing.
Is? Are? Is my writing starting to go the way of my body? Are there mental components to this disease?
Yeah. Hives. So Manny is going to run it by the doctor. I do so hope he doesn't shut this down again.
400 cc of urine; from the very expensive bag of saline hanging above me to my left, through my wrecked and distressed body in no time, into the plastic bottle, purposefully ubiquitous hereabouts.
What a long day in the hospital this has been. It's five minutes to midnight; we're halfway through the Rituxan. We've gone MUCH further down the chemo road than we did last night
260605 – 0005 hours
Once again, I'm feeling vampirish. But the doc on call's come by and said I look fine. "After all," he goes, "it's poison you're taking. Your body doesn't like it."
He checks my chart: "B-cell Follicular," he notes and nods, as if I needed reminding. He leaves, like a character in Scrubs or—even better—The House of God, a wonderful book written by a guy I went to school with, used the pen name "Shem."
Manny has decided to stay an extra half-hour past his quitting time. "We want to keep the infusion rate right where it is till we finish," he says, and I love him for it.
The Rituxan drip is complete. A true milestone if I've ever seen one.
The new night nurse is Indian. Completely masked and gowned, as though she's hunting for E.T.. The next couple of chemicals she'll be pushing into my heart are caustic when applied to the skin. My tired brain attempts to make sense of this apparent contradiction, but the fact is: I don't really care. Gimme everything you've got. Kick this fucker's ass.
I consider whether I think the word cyclophosphamine is a beautiful word or not, and decide: yes, it is, though not as graceful as vincristine, which the Indian lady pushes manually for one minute at 5:25 AM.
260605 – 0530 hours
And that does it. On Sunday, the 26th of June, in the 2005th year of some peoples'-but-not-everybody's Lord, two weeks to the day from the night this whole horrible thing got started when I couldn't breathe and couldn't sleep in my very own bed, alone and afraid, I've had my first round of chemotherapy. The cost, in round numbers, of these two weeks exceeds eighty thousand dollars. Next to the quagmire
that is the Middle East
, I conclude that Universal Health Care
is the most important issue in America today. Because if you're poor, basically, you die. As a good friend said to me, waggishly, as is his wont, after another $16,000 round of chemotherapy three weeks later: "Aren't you glad you went to Vietnam
And my answer to that is simple: Yes and no. Yes, because I'm an unreconstructed hippie freak who doesn't need to listen to anybody's bullshit about the "necessity" and "nobility" of war. No, because this is full-blown Agent Orange cancer. The government will soon grant me a one hundred percent service-connected disability and, monthly, a check will arrive that amounts to less than a single week's pay. One presumes my funeral will be free.
Kiss my ass, Richard Nixon. Fuck you, Robert Strange McNamara. Rot in Hell, all you cowards in Congress and the electorate who let THAT one and all the other ones since go down.
Though I am really in no position to notice it particularly, Captain Newton has had an awful night and an even more dreadful morning. Our bathroom as a result is perfectly unusable. I'm feeling my oats. I decide I'm going to explore the place, sans wheelchair for a change. I head back to B Pod, my original billet, because there—at least— they've got daylight. Curious, isn't it, that they put the sickest patients in the darkest ward?
By the time I return to our room, the Dodgers are beginning to unravel against the Angels again and I am hit with my first bout of diarrhea. Very chemical-ly, burning and unpleasant, but there you have it. You know you're alive. I can certainly sympathize with Captain Newton and especially these nurses, who are all saints, even the dumb ones.
It has taken three or four nurses a couple hours to pull Newton together today, and it seems like there's always one nurse in there doing something. HOW is treatment like this possible in the private sector?
Anderson hits his 1000th RBI. Angels 5-3, top of the ninth.
I contemplate the extremely difficult task of calling my brother back in New York. What a burden this will be for him, after going through years of watchful-waiting with our father who art in heaven. My cell phone is dead. I have no charger. Task deferred.
Enduring another bout of diarrhea
, I contemplate this whole process of lysis
, the breaking-down and excretion of the lymph nodes and cancer cells. We have here a tricky proposal because of possible damage to the kidneys.
Bettina has left for the day. I've seen her for less than three minutes all day, and the ward's a mess. I don't think the other nurses respond well to her attitude, and it takes the night crew their whole shift to pull things back together. It occurs to me that she is the sort of person a good manager would fire in a heartbeat. Interestingly, she walked out just as Chemosabe's bell went off. She rushes back in, acting all panicky: "Don't move your hand too much!" she screams at the helpless man. "So this doesn't go off!" Is she talking about something so simple, yet essential, as his PICC line?
Chemosabe's breathing is very heavy.
Yet another clueless young girl doctor has been working with Captain Newton for a very long time. She seems to be talking herself through the procedure, and even I am frustrated by the way things are going. Suddenly Newton's bell goes off. A nurse calls in from the ward and Newton responds with many sharp raps. The nurse comes quickly, leaves quickly, and comes back with Manny the Magnificent, who rolls his eyes at me before settling in to explain to the young doctor how to do whatever it is she's trying to do. At one point Manny has to leave the room for supplies, and the girl doc apologizes to Newton. The poor bastard. He's had a horrible, no good, very bad day.
Captain Newton awakes vomiting. He's begun to tire out the nurses. Even Manny is slow to respond, based on the fact that Fidelis, the Nigerian, is giving me a sugar test and informs Manny what's going on. Manny eventually takes the extra step of ordering an IV treatment from the pharmacy, which will necessitate Newton's cooling his heels even longer.
Two things happen that please me greatly:
The beauteous Ursula visits, later than I thought she might and thus true-to-form. I make sure to recount my perceptions of the infamous day crew, led by the villainous Bettina, in front of Manny and the others. I want them to know that they are appreciated for what they do and who they are. The fact that, but for Bettina, I'd be out of here at least a day earlier, and thus would have saved the taxpayers some money, is probably lost on no one.
Iceowl, steady Joe, veteran of filial cancer-watch, compadre, calls. I make it clear that I think Newton is terminal, and he quite sensibly notes that I need to get out of this place, and quick.
Tell me about it! Because the smell alone is and has been unbearable. I have no idea how they ever manage to clean up after the Captain (and how many more like him?) day after day after day. It's just simply extraordinary.
And I must say, I don't know how I'd feel if it were me in that position of being totally dependent on the ministrations of saints for the simplest life-sustaining things.
And how is it that the system allows this double standard for doctors and nurses? How is it that medical school doesn't prepare a young physician for the essential reflex action in an emergency, which I have witnessed at least three times today?
270605 - 0300 hours
I awake with a wet bed. Get up to take a ripping pee. 400 ML on top of what's already on the sheets. I ring for the nurse. In eight minutes she finally arrives.
"I wet the bed."
"Why?" she says.
"Why? Why!?" Cause I've got cancer! I just finished chemotherapy, am undergoing lysis and they gave me a sleeping pill you stupid…
But of course I didn't say that. I just thought it was a goddamned thoughtless stupid thing to say, and me with a liter and a half of piss already sitting there unemptied since the shift change.
I just took off my pants and waited for her to bring me dry ones. She did. Five minutes. Size XXL. I'd have to have a hardon the size of a baby's forearm to hold them up.
That silly nurse has awakened me from my dreamless sleep:
"I'm going to put a catheter on you."
"You already wet the bed two time." (Can you say Jamaica?)
"No. One time."
Another nurse comes in:
"No! No! Captain Newton!"
Now they're confusing me with my new best friend. Give me Manny and Mom for Chrissakes. Get me out of here!
A new nurse comes in. The regular week day girl I figure. It feels like my weekend from hell is well and truly over. Incredible boredom begins to settle in, as my latest CT scan and other tests are scheduled and postponed. A young Dr. Yu comes in. He's concerned about "masses" he tells me. He tells me I may be in for a long week. He is especially concerned about hoarseness and will schedule a consultation with a head and neck doc.
"Just throwing darts at this point," he tells me, but—shit, man—throw them at somebody else.
It has become obvious that they've forgotten my breakfast. I can hear two nurses arguing over whether I get it. Once again, they've confused me with Newton.
There is good news, however. Dr. Romero, an oncologist, arrives and reports that I'll get out tomorrow. Oh my. Let's knock this stress level back a bit, shall we? Relax, pilgrim. Even the Duke had his day. Dad. Paul Allen. Steve Jobs. Jackie O.
Four Girl Docs troop in like Brownie Scouts to observe a heavily sedated Captain Newton. He hasn't made a sound or moved since I've been up, and I've been up—as you know—for hours. They gather informally around the bed for—yes—less than ten seconds and troop back out, avoiding my gaze. I wonder what their medical degrees cost them anyway? Will it be worth it to the world?
I need a shower. I want to wash my hair. I'd like to brush my teeth.
People are trying to arouse Newton for his radiation therapy. They're gonna need some heavyweight help, cause he's not moving. A fat black nurse is yelling at him. Now she's arguing with a couple orderlies out in the hall.
A more reasonable nurse enters and begins to make things happen. A second new nurse comes in. They are unaware that Newton can't talk. I can't believe it.
"I haven't read his chart," says nurse number two.
A. Nice. Slow. Shower. Soap products, all very soft, water impossible to get too hot. The little plastic razor doesn't work too well. The toothbrush is too soft to remove the accumulated gunk. I note, however, that this cleaning up seems to constitute an awful lot or work. I am feeling very very weak. As I exit the bathroom, I become aware of how truly awful the room smells.
The rest of this day is filled with procedures and waiting for procedures. I tour the far corners of the ward, attached to my IV pole. I eat my lunch and an afternoon snack in the patients' lounge, far from the stench of "home." I've begun to feel independent for the first time in a week.
When I return to the room around four in the afternoon, I discover that Captain Newton has been moved, the room has been cleaned, and there's a new guy sitting there, worried.
"Just getting started," he says to me. He's got the look, for sure. He's got a cigarette-sounding voice. A nasty cough. Mr. Garcia. He gets interviewed by a Girl Doc, Dr. Lee:
Two months sore throat. (No, he corrects, five months. More like five months.)
Lost ten pounds.
Shortness of breath since last week.
"Always had that feature in the middle of your tongue?" she asks.
"Some fullness here."
And so it goes. Out with the old, in with the new. Mr. Garcia's gonna get a one-time IV drug and go home tomorrow. He may be lucky, or he may be headed down the same combat trail as Captain Newton, and isn't that the fun of this god-awful disease?
"I stopped smoking when I found out I had this," he says to me after the doc leaves. He's got early throat cancer. I don't mention that it took ten years for throat cancer to kill my old man. He smoked unfiltered Luckies for all ten of those years, so…yeah.
280605 - 1300 hours
By noon this day I've had my CT scan, which shows massive tumor-shrinkage throughout my entire body, and I've learned to shoot myself up with a daily dose of Filgrastim, a "recombinant human granulocyte colony stimulating factor" that will help bring my white blood cell count back to normal.
My "Palliative Care" team (that's a euphemism best gone into another time, for this will be the gang that sees me through the ugly days and finally buries me) has decided that my "minimum" level of existence requires me to be able to continue to write. So that's the
Immobile perhaps. Drugged, certainly. But popping out my four pages a day, something—to tell you the truth—I've always looked forward to.
I've said goodbye to what seems like hundreds of people. We've all been smiling a lot. I navigate under my own steam to the elevator, anxious to see the sun up close. An amazing thing happens:
As I'm waiting for the elevator, a familiar-looking man steps into my field of view. Just as I recognize him, Captain Newton's hearty, bearded, burly son brightens and says:
"Hey! You're getting out, hunh?!"
"Yeah! How's your dad?"
It's a wonderful world, isn't it?