May 6, 2003 -- In his 2003 book, "Lessons for Dylan" (PublicAffairs), Good Morning America's Joel Siegel passes on life lessons to his son, Dylan, who was born just as Siegel began his battle with cancer.
Siegel was 54 when he was diagnosed with colon cancer. Only two weeks later, he found he was going to be a father for the first time. "I knew my father pretty well; I was almost 40 when he died," Siegel said. "I faced the very real possibility that Dylan would never know me unless I wrote a book."
Now, Siegel shares all the things he wants his son to know — about life's pleasures and sorrows, his Jewish heritage, and the challenges of growing up — in case he's not around to tell the story.
Of course, having a movie critic for a father has some advantages. Lessons for Dylan is punctuated with great stories, featuring Orson Welles, Marlene Dietrich, Brad Pitt, Stevie Wonder and the Beatles.
Siegel candidly addresses the end of his marriage to Dylan's mom and other difficult passages of his life. He offers wit and wisdom, favorite holiday recepies, and some fatherly advice on sex ("Ask your mother.").
The Following is an excerpt:
1: The Cure Can Kill You
They are words you don't easily forget, "I don't have good news." Especially when they're said by a doctor who's just finished giving you a colonoscopy.
It was the summer of 1997. One week before we'd had very good news. The in vitro had taken. Ena, your mother, my wife of one year, was now officially pregnant. The baby, that's you, Dylan, was due in February. The American Cancer Society said, all things considered, I had a 70 percent chance of being alive to witness the birth.
I had surgery one week after the diagnosis. It was supposed to be easy. It wasn't. The lesion (the word even looks like a euphemism) was lower than the doctors anticipated. To lose the cancer they had to tie off my colon. They gave me a colostomy. There were nodes; the cancer might have spread. The protocol would now include simultaneous radiation and chemotherapy. The odds of my seeing you born dropped to 60 percent.
One day, as Ena was leaving my hospital room I noticed, for the first time, that she was starting to show. I started to cry.
I remember looking out the hospital window at a tree, a tree that had somehow managed to grow large and lush even though its seed had somehow taken root on a two-foot wide spit of land between the FDR Drive, one of the busiest highways in America, and the East River, one of the most polluted bodies of water in the world. And I remember thinking about the impossible coincidences that come together to create the miracle of life.
I began charting the coincidences that had brought me, in the words of a Jewish prayer, to this season. I thought of the things I'd been able to do, the places I'd been able to see. My grandmother crossed the same river I was looking out at each day to work in a sweatshop, I'd been invited to the White House and met three Presidents — and hadn't voted for any of them. If whoever had given this to me wanted to take it back, I decided, I could do it. I could give it back. And somehow knowing I was able to give life up gave me the strength to hold on. As for miracles, until I saw you being born, Dylan, I didn't have a clue.
I missed a lot when your mom was pregnant. We didn't do Lamaze, I barely read the books. I was there for your first sonogram, but I was too sick to pay much attention to you or your mom. Your profile on the black and white print-out looked exactly like the special effect of the God-like baby from 2001. I didn't think it was real. I thought they printed these up and gave the same one to all the parents.
The morning you were born, Dylan, maybe it's because we're used to machine-aged hard edges, polished steel, right angles, I wasn't ready for the glop and the imperfections and the organicness of it all. "My God," I muttered under my breath, "it's just like the movies." And, of course, it is: the slap, the cry, the pride, the kitchy-kooing.
A woman in labor produces a hormone that allows her to forget the intense pain. But she doesn't forget much of anything else. A few days later Ena frowned and said "Just like the movies?!"
Almost 30 years of doing live television has taught me to edit myself. I didn't tell Ena till months later than what I cam very close to saying was "My God, it's just like Alien."
When you were born, I did a quick count: hands, arms, legs, fingers and toes. Two, two, two, ten, ten. It's a guy thing. And your profile looked exactly like the sonogram. It still does.
I told my friend, Rabbi Larry Raphael, whom I've known since he was your age, "I have no secret ambitions for Dylan to star in the NBA or win a Nobel prize, I just want him to be normal."
"Normal," Larry told me, "but not average."
He also told me, about kids, "the days take forever but the years go by in a minute."
He's right, of course. But when you're reminded of your own mortality every morning when you literally watch your hair fall out in clumps, days that take forever aren't so bad. And average would be OK, too.
The day we took you home from the hospital was my last day of chemotherapy. There's a picture of me carrying you. I look like s--t. Ten years older than I look today and I should look five years younger.
OK, I'm old. I'll be 68 at your Bar Mitzvah, 73 when you graduate high school. But my dad was 42 when I graduated high school and for all he related to me he might as well have been 73. Age is not a liability. In fact old age can be an asset. When I'd ask my dad for money he'd pretend not to hear me. But he really was in his 40's. When you're old enough to ask me for money, I really won't be able to hear you.
One of the few negatives of being an older parent — I had no idea what my mom meant when she would look at an infant and say "She looks just like so-and-so," when so-and-so was close to 50 and even closer to 300 lbs. When you were a newborn and looked just like my baby pictures I finally understood. She didn't mean the baby looked like so — and — so looks now, she meant she looks like so-and-so did then. And, the tough part, when I finally did figure it out my mother wasn't here for me to tell her.
Because you were an in vitro baby we actually have a Polaroid of you when you were six cells old. I have no idea how you'll be able to assimilate that when you see it and realize what it is. But every time I look at that picture I can hear my mother say,"Looks just like cousin Shirley." And I hear the punchline to the Thermos bottle joke. "It's the greatest invention ever, better than fire, better than the wheel. Keeps hot things hot, cold things cold, how does it know?"
How did those cells know to become you and not a tree or an Oldsmobile? And what I really hear is John Glenn, when he looked down at the earth from deep space saying, "It's impossible to look at this and not believe in God."
The first thing I saw after I came to was this huge Lichtenstein pop-art poster. If it had been a Raphael Madonna I might have thought I'd died and gone to heaven. But Lichtenstein? I died and went to the Museum of Modern Art?
It was the recovery room at New York Hospital, I figured that out. There was a clock near the poster and it must've been a big clock because I could read the time without my glasses, 4:25, and I wondered, "Where is everybody?"
Save for some guy at a computer terminal at the opposite end of the room I was the only person there. "I've had the only surgery in New York Hospital?" I thought to myself. "Will they still charge me extra for a private room if I'm the only patient?" I really did think these things.
I was bandaged, belted in, there were tubes coming into my nostrils and clear liquid being pumped into my arm. I could barely move but I wasn't sure I wanted to. I did wiggle my toes and they wiggled back, which is the reason this book isn't called Where's The Rest of Me.
"Hey," I shouted at the guy at the computer terminal, "where is everybody?"
Where, I wondered, was my wife, Ena? My cousin Ronnie the Doctor, an LA gastrointerologist who flew to New York to make sure they took good care of me? My friend Jerry Imber, a plastic surgeon on the staff of New York Hospital who promised to come by and make sure the scar didn't show.
"I'll tell 'em you're up," he said.
"My wife should be in the next room," I said. One of my first wife, Jane's, memories coming out of brain surgery twenty years before in this same hospital was hearing the recovery room nurses buzzing about Joel Siegel waiting in the hallway. Three years later Jane would die in this hospital, too, when her tumor came back. I tried not to think about that.
"Nobody waiting," the guy grumbled and went back to his book.
He could have told me it was 4:25 in the morning.
I'd gone in at 7, the morning before, for what was supposed to be routine colon cancer surgery. Snip out the bad stuff, check the nodes, glue the two pieces of the colon together, and he goes home in a few days as good as new.
Ena and Ronnie and Imber had been there, waiting, at 5 in the afternoon when my surgeon stumbled in, stoop shouldered and exhausted, after six hours of surgery.
The lesion was on the cusp between the colon and the rectum. There was barely enough tissue left to staple the clean ends together. To give me time to heal he had to, as they say, cut me a new asshole, a temporary colostomy two inches due right of my belly-button. There were nodes, evidence that cancer cells had escaped the initial site and might have been and probably were roaming through my vital organs, looking for a vacancy sign. If these cells grow and metastasize, the cancer would then spread, most likely to my lungs, my liver or my brain. Cancer metastasizes in organs that use a lot of blood; the lungs, the liver and the brain fill the bill. The heart isn't an organ, it's a muscle, which is why we're spared heart cancer. Chemotherapy and radiation are the guns oncologists use to kill these rogue cells to keep them from spreading and, suddenly, things weren't so simple.
I learned later, much later, that the surgeon told Imber he would have to make the colostomy permanent, he wasn't sure he could leave enough margin-free tissue to reverse it. Imber urged him to do his best, give it another try, work a little harder. He did. Thank God. It pays to have friends in low places.
Cancer is infantilizing.
You're no longer a grown-up.
You can't take care of yourself.
After surgery, while living with the side-effects of chemo and/or radiation, you need help walking, dressing yourself, even feeding yourself. You lose control over bodily functions you'd learned to control when you were a child. Your hair falls out, your muscles give up, you grow decades older in weeks or months. (I kept thinking of those pictures of FDR taken during his presidency, how old he got from 1932 to 1945 and how he never got younger.) And, on top of all of that, no one can tell you with any certainty how long you have to live.
I don't remember how or when I was told about the colostomy. I was on a morphine drip, felt no pain, and don't remember much of anything. I do remember meeting the colostomy nurse a few days later. This has got to be the worst job in the hospital. Maybe in the world. I remember a moment from a Shaft kind of movie where the tough gang-leader gets shafted, and as they're dragging him, bullet-ridden, into the emergency room he's screaming "Don't give me the bag, doc. Kill me before you give me the bag."
I got the bag.
A colostomy is an ingenious idea. They really do cut you a new opening, called a stoma, somewhere on the right side of your navel. They glue a kind of Tupperware ring around it — they come in a series of sizes in the department of your drug store you've glanced at ever since you were a kid and prayed you'd never have to buy anything there. You glue the ring to your skin, skin-tight, you hope. You attach the bag to the ring, air-tight, you hope.
Before plastics they made the bags of silk, raincoat material, all kinds of things, and tried to hold them in place with metal and bone. They didn't work well, and it wasn't just the smell and the leakage. This is an open wound, prone to infection. They are much safer since antibiotics, the appliances really do work like Tupperware, you press till you hear the "snap." They sell reusable bags you wash out between uses. They also sell, at a much higher price, disposable bags you only use once. I figured, go for broke, I'll allow myself this little indulgence. Hugh Downs tells a story that when he was a page at the NBC radio station in Chicago back in the '40's, Paul Reimer, who wrote Vic 'N Sade, a comedy so big it ran on two different radio networks at the same time, was walking down a hallway one day eating a Milky Way. As he passed young Downs, Reimer saluted him with the half-eaten candy bar and said, "I make big, I spend big." That was going to be my answer if anyone asked about the disposable bags.
My aunt, Barbara, a long-time colon cancer survivor, sent me some issues of a magazine for colostomy patients filled with fun-in-the-sun-even-though articles and colostomy bag fashion spreads. Honest. Al Geiberger, it turns out, played the PGA tour wearing a colostomy bag, giving new meaning to the phrase "hole in one," something I truly did not want to know. I believed my doctors when they told me this was temporary for me, not a life-style change, and I was helped by the reporter's syndrome: disassociation. Every reporter I know has done things he or she would never do in real life because when you're reporting you're the perfect observer. You watch, you make notes, but the real you isn't there, it's just watching. That's how reporters can ask ridiculous questions of people in obvious pain, and insult world leaders and would-be Presidents. I once spent half-an hour sitting on a foot-wide ledge, thirty stories above Times Square. In real life I'm afraid of heights but Joel Siegel, reporter, fears nothing.
Shrinks call this "denial." My shrink, Olga Silverstein, said to me "No wonder you're doing so well, you're in complete denial."
I answered so quickly I stepped on her last word, "No, I'm not."
OK, I was, probably still am, but it works. I learned to change the bag, of course. You're supposed to pull off the ring that holds the bag and clean the stoma once every two weeks. That I wouldn't do. I went back to New York Hospital and had the colostomy nurse do it. I hired private duty nurses to do it. In Connecticut, where we have a weekend home in a town called Lakeville, I hired the visiting nurse service. I didn't want to look at it, I didn't want to know from it, and that went on for months.
I learned two old friends had gone through similar experiences — both because of diverticulitis and not cancer — two friends I'd known since Louis Pasteur Junior High in West LA. Bill Ginsberg, yes, that Bill Ginsberg, Monica Lewinsky's lawyer. And Chuck Plotkin who's work you know even if you don't know his name; he's Bruce Springsteen's record producer. Both had had colostomies, both had had them reversed, both had survived.
(Chuck is one of the calmest, most centered, most competent people I know — he always was, even when he was 11 — and he, just by being himself, gave me the confidence to know I could live with this thing. Bill, it turned out, knew an awful lot about s---ing in a bag perhaps because his legal specialty is medical malpractice. (And whatever shenanigans he pulled during the Clinton scandal, he did keep his client out of jail and succeeded in making us believe she was the aggrieved party, certainly against the White House's best wishes and most fantastic spins.) What helped most, though, was having friends I could laugh with. The worst, we agreed, was changing your bag in an airplane. You become a member of a very different kind of "Mile high club." That was the worst. We also agreed there was no best.
There's no feeling in the stoma, there aren't any nerve-endings there, so the only way you can tell if you're going is by feeling the bag. I developed a nervous habit, my right hand would brush against the bag to see how full it was, the way my left hand tends, unconsciously, to brush against the bridge of my nose to make sure my glasses haven't slipped. If I hadn't become a movie critic I could've been a hell of a third-base coach.
One morning, on Page Six of the New York Post, the tabloid's gotta-read gossip column, I read that I'd thrown a tantrum at a movie screening, demanding an aisle seat and threatening to walk out if I didn't get one. Richard Johnson writes the column, he'd called me the day before to check the item, an awfully nice thing for a gossip columnist to do. I'd told him the studio people caused the fuss, there was no aisle seat but I'd offered to stand while I watched the film, which was the truth but he didn't believe me and ran the item anyway. What I didn't tell him was that the reason I needed an aisle seat was because I was afraid my bag would fill, and pushing my way out of the middle of the row in a crowded theater, would jar itself loose. If Oliver Wendell Holmes convinced the Supreme Court it was dangerous to shout "Fire!" in a crowded theater, what would he have to say about the riot that would cause?
I'd travel with a kit: baggies, wipes, paper towels, Lysol spray. You know how they say "After a while you get used to it?" After a while you get used to it. It becomes the new normal and it's no big deal, it's what you do to get by.
One of my first days doing the news, in 1972 on hippie-radio KMET-FM, 94.7 in Los Angeles, I read a story that came over the wire about a so-called enema bandit in Springfield, Illinois. He would tie up women, give them enemas and leave them in their bathrooms. The last line of the story: "He has yet to leave a clue or a trail behind him." I thought of that story every time I cleaned up the trail I left behind me.
The colostomy, it turned out, was the easy part, one of the side-effects of the disease. The hard part is the cure. If you're not careful, or a little lucky, the cure'll kill you before the disease will.
I liked my oncologist right off. Dr. Jeffrey Tepler. My cancer was common enough that I didn't need cutting edge treatment; thousands of people every year got what I got, and, I knew, when the year was over some lived, some died. What Dr. Tepler had going for him was that he genuinely seemed to care which of the two would happen to me.
In his book-filled office, plastered with water-colors his kids had painted, Tepler recommended a course of radiation at the initial site and chemotherapy to kill any of the rogue cells that might have traveled through my lymph nodes.
5-FU with Leukavorin is the chemotherapy of choice for Grade 3 colo-rectal cancer. 5-FU is the chemical that kills the cancer cells, Leukavorin is a vitamin that amplifies the kill-rate. It had been the chemotherapy of choice for ten years which, my reporter's instinct told me, was a good thing. There are few arenas as cut-throat or as competitive as the search for a cancer cure. Every once in a while a scientist trying to cure cancer will get caught lying in a paper or keeping a second set of books in his lab and make the front-pages, the stakes are that high. The prize they're fighting for isn't grant money or even the Nobel prize in medicine; the real battle is for immortality. Salk, Einstein, Newton, Galileo, how many scientists' names does the average person know? Find the cure for cancer, you're on humanities' short-list for a thousand years. So, I figured, if the finest minds of my generation couldn't find anything better then 5-FU with Leukavorin in ten hot years of research, that was the stuff for me.
The way it seems to work the best is through infusion. My surgeon had dug a port into my chest. Plastic tubing connected the port to a pouch about the size of a box of Grape-Nuts I would have to live with 24/7; it was, literally, part of me. Inside the pouch a computer-controlled, battery-powered pump would dribble just the right amount of chemical through the tubing, into the port which connected to my jugular vein. The pouch even had a belt-loop so I could attach it to my slacks, hide it with a sport-coat, I'd been told. But it was a bit too bulky for that and the plastic tube would kink if I ran it under my shirt so I ended up running the tube up my shirtsleeve and carrying the pouch full of chemo in my left hand like an attaché case from Hell. That's the way I went to work, that's the way I interviewed Brad Pitt, that's the way I interviewed the stars of The Lion King, that's the way I appeared on network television. I have no idea how I did it.
Two nurses came to our apartment to hook me up to the chemo. They pried open the layer of skin that covered the port with a rather large needle and pumped it with saline to make sure I wasn't backed up like an over-used drain. They told me if something should happen and the chemo should leak or spill, DO NOT, UNDER ANY CIRCUMSTANCES, TOUCH THE CHEMICALS!
They gave me 24-hour emergency numbers to call. They would come and clean up the mess, it is that toxic. And that's on the outside. What was it doing to my inside? I found out fifteen minutes after they hooked me up. I got sick.
I ran a fever, I was nauseous, I had diarrhea. All expected, they assured me (assured me?), though not usually this quickly. But, one of my mantras, pain is God's way of telling me I'm not dead yet.
Somehow I learned to sleep on my right side, the chemo pumping into the port on my left, and three mornings every week I dutifully showed up at Memorial Sloan Kettering for radiation.
I'd gone through this when they treated my wife, Jane's, brain tumor. They radiated her brain, they radiated my tushie, the symbolic difference did not escape me. First they did a dry run, focussed three green lasers at me and built a computer model from which craftsmen molded a three-dimensional, plasticene copy of my backside. The overwhelming number of colo-rectal cancer reoccurrences happen at or near the initial site and radiation is the best way to ethnic-cleanse the area so there's no cancer left to come back. Because it was a dry run I could watch them line me up and see my tushie take shape in green parabolic arches on the computer monitor. It looked amazingly like the computer models I'd seen doing behind-the-scenes stories on the use of computer animation in Toy Story and Beauty and the Beast.
"That's right," my radiologist told me, the world renowned Dr. Bruce Minsky.
"The same people developed this for us. First." Dr. Minsky really is world renowned. And he was right about the computer program. A year or so later I interviewed the president of Pixar for a behind-the-scenes story on Toy Story 2 and he confirmed it.
"We couldn't get any money to make any movies so we looked around for other applications and created a program to make 3-D models from Cat-Scans." He was very flip about it, couldn't care less that he might have saved my ass, movies most obviously being the far more important part of his business.
Once the model was finished, Dr. Minsky marked the model exactly where the radiation needed to hit. I never saw the model, never wanted to. Hey, I'm glad I can't walk behind me. But a couple times a year I'm solicited for personal items for celebrity auctions and I think about calling Dr. Minsky.
Next step, he duplicated the mark on my real tushy and gave me three tiny tattoos he'd use to pin-point the lasers. A perfect idea except for one small detail: Jews aren't allowed to have tattoos. There's a nice reason for this, really. Because we're all equal in God's eyes, we're all supposed to leave this world exactly the way we came into it. No jewelry, no signs of worldly wealth. Orthodox Jewish coffins are held together with wooden pegs, there's no metal on them. A European affectation, I think, because in Israel there aren't any coffins, Jews are wrapped in a shroud and slid into the sand, which is why there are no "Treasures of King Solomon" exhibits paralleling the Treasures of King Tut. No mummies, no gold, no treasure, no tattoos.
Lenny Bruce used to do a routine about how his mother screamed at him when he came home from the Navy with a tattoo on his arm.
"Now you can't be buried in a Jewish cemetery," she screamed.
"OK," Bruce went on. "I'll be buried in a Jewish cemetery, they can bury my arm in a Catholic cemetery."
Look for my tushie next to Lenny Bruce's arm.
The major side-effect of radiation is exhaustion but the effects are cumulative and, at first, I was kind of peppy about the whole thing, smiling my way through it even though it took me a long time to get dressed and undressed because I had to loop my clothing around the chemo tube that was attached to my chest. Once the lead doors slammed shut and the humming of the x-rays started, I had to lie as motionless as possible for twenty minutes. I didn't move, the x-ray moved, computer controlled to come at me from three different angles.
Joanna Bull had been Gilda Radner's therapist when Gilda was fighting cancer. Joanna studies Eastern religions and taught me the Zen trick of self-hypnosis. She told me to create a picture in my mind of something beautiful, positive, serene, something that would protect me, make me smile. It's not hard, once you uncluttered your mind, and I recommend this technique, it kept me positive and serene through days of discomfort.
I pictured my grandmother. I'd see her face, I'd try to feel her hands, her long fingers, wrinkled as if she'd spent too much time in the pool. She, too, had colon cancer. She was diagnosed at 80 and lived till 90 and died of something else.
The exhaustion eventually began to show. I'd prepared for the worst, at least I thought I'd prepared. I remember a friend, Michelle Cossack, who died of breast cancer, telling me about the depths of the chemical depression caused by chemo.
"No matter how depressed I am knowing I have breast cancer, knowing I've lost my breasts, knowing I might die," she told me, "the chemical depression is worse."
The exhaustion caused by the chemo and radiation is also unimaginable. I have one memory of lying on our couch, staring at a glass of water. I really wanted that glass of water. Really wanted that glass of water. I was on the couch, it was on our coffee table, maybe a foot away. I could've reached it easily, all I had to do was extend my arm and I probably wouldn't even have had to extend it all the way. But I couldn't do it. I couldn't even lift my arm. I was too tired.
I'd been warned that chemo and radiation would also cause me to lose my appetite.
I write "chemo and radiation" because as each symptom developed my oncologist would assure me it was caused by the radiation and Dr. Minsky would assure me it was the chemo.
But I didn't just lose my appetite, food became demonized. Another scene out of a movie and, this time, not a very good movie, I was living on rice pudding, supermarket rice pudding, bland, sweet, comfort food everybody I ever knew who had AIDS lived on. And the kernels of rice became like maggots in my mouth. When I spit them out I could see them writhe. Eating dry toast was like biting into a two-by-four. Like chewing sand. They had given me pills for nausea — $40 a pill. I had pills for diarrhea. I'd put my colostomy bags in baggies, put the baggies in a garbage bag. One morning I weighed the previous day's output. 10 pounds. When the pills didn't stop it they prescribed tincture of opium.
"If you'd given me this thirty years ago," I told Dr. Tepler, "I could've paid for my entire college education. And bought a car."
When rice pudding turns to maggots in your mouth, the last thing you want to do is experiment with opium. I followed the prescription to a T. It didn't work. I knew what would.
I called my friend Jerry della Femina.
"Jerry, is there any reason for you to think your phone might be tapped?" "No," I think he thought this was the set-up to a joke like "Do you have Prince Albert in the can? Well let him out, Queen Victoria's horny!"
"I don't think my phone is tapped either," I said. "I need some marijuana."
"I'll be right over."
Jerry della Femina is, of course, the advertising genius. Part of his tummling has always been how the kids in his agency get stoned in the bathroom. I called him on it. An hour or so after the call Jerry showed up with three very tightly rolled joints and a word of advice: "This s--t is a lot stronger than the stuff from the 60's."
I waited until the nausea hit and tried some. Two hits, the nausea was gone. I had some toast and tea and a bowl of cereal, put on my Grateful Dead albums, turned the stereo up to a Spinal Tap-11, ordered a pizza, baked a batch of brownies, tie-dyed my T-shirt and spray-painted "Free Huey Newton" on the side of my apartment building.
No, I didn't. But the nausea was gone, and I could down the toast and tea and the cereal. It's also an anti-depressant and that helped, too. But the stuff was an awful lot stronger than stuff from the 60's. Like so much of everything else, innocence has disappeared, even from dope-smoking. In the 60's everybody was an amateur. Even Owsley who may have invented LSD and who permeated Berkeley with five-dollar drops on blotter-paper called "Owsley blue" wasn't in it for the money. Today's dope farmers hybridize seeds and titrate percentages of THC and the stuff is dangerously strong and, because of that, not so much fun. But it worked.
I had radiation the next morning, an interesting concept. Lie here motionless, we're going to burn your insides, make you sicker than you've ever been in your life, zap your gonads with so much poison that if you are able to have children they'll look like the Creature from the Black Lagoon, and we expect you to wake up early, hail a cab, and come in every Monday, Wednesday and Friday for the privilege.
That morning I told Dr. Minsky about the marijuana.
"You know," he told me. "The laws of the state of New York don't allow me to mention marijuana, but it is the best drug we know about for the side-effects of chemo and radiation."
I smoked only when I needed it. I'd lost so much control over my body — my hair was falling out, I couldn't control my bowels — I didn't want to give up any more. In fact I never finished the three joints.
The second time I smoked dope the phone rang and it was my cousin Felice. Felice is a customs officer, she carries a gun, she and her husband are building a log cabin in the high desert south of Tucson. You didn't think nice Jewish girls did this, did you? In the family we call her "Felice de Police." I've never asked her exactly what it is she does for the Treasury Department but, well, she was raised in East LA with a bunch of kids who speak Mexican Spanish, she's dark complected, she lives near the Mexican border, you figure it out.
I talk to Felice maybe once every couple of years and I was stoned out of my mind when I picked up the phone. When I heard, "Joel, it's your cousin Felice," it was all I could do to keep from shouting, "It was Jerry della Femina! It was Jerry della Femina!"
Then I got too sick. I don't know how Ena got me off to radiation or to Tepler's but both doctors agreed it was dangerous for me to continue treatment. Tepler took me off the chemo, the pouch was gone, they kept the port "just in case." (Just in case, even in my altered state I understood, they ever needed immediate access to my jugular vein.) Minsky told me I needed a few weeks away from radiation. I wasn't so worried about that. The radiation schedule had built-in hiati, the docs and technicians would take Labor Day and Thanksgiving and Christmas off and Minsky showed me the numbers, a significant number of patients needed time off and it didn't seem to effect the cure rate. But the chemo was something else. Tepler had told me that it would be easy, he'd told me many people got through it with no side-effects, that the odds were my hair wouldn't even fall out. So I figured, My God, I'm too sick for the treatment, I'm going to die. When he about-faced and tried to convince me my reactions to the chemo were normal I not only got mad, I got an apology.
"Just tell me the truth," I told him.
"Look, if you were climbing Mount Everest would you want the sherpas to tell you, 'This isn't as hard as it seems. If you can do two miles on a treadmill you'll make it easy'? Or would you want them to tell you, 'This is probably the hardest thing you've ever done but we've been here before so listen to us and we'll help you make it.'"
Then he fessed up to the almost random, very unscientific way the medical community decides how much chemotherapy over how long a time a patient should receive. You really can't do a large, double-blind study because that would mean people with cancer would get placebos and they'd die. So, Tepler told me, they try out a new drug on a small sample, in the case of 5FU with Leukovorin it was fewer than 20, and they give them as much of the stuff as they could stand until they get so sick they couldn't stand it anymore and that became the standard dose. Which means the doctors and the pharmaceutical firms and the Food and Drug Administration have no idea how little a person with cancer needs to stop the cancer. They do keep lists of how many people live or die so they know, at least for the first few years after the treatment has ended, how much chemo you have to ingest for it to be effective. Tepler showed me I was still on the plus side. After a few weeks off, he told me, they'd restart the 5FU, dripping it into my arm in his office, one hour a shot, three times a week.
Of course this entire time Ena was pregnant with Dylan. I made very bad jokes about not knowing which of us was throwing up more. I was not a good going-to-be-dad. We found a dula, basically someone who'd be there at the birth to do what the daddy should do: she knew when Ena should walk, when she should stand, when she should push, when to head for the hospital. The difference was the dula had assisted at hundreds of births and new daddies hadn't assisted at any. And I was completely useless. I was too sick.
The dula timed things so perfectly Ena came within minutes of giving birth to Dylan in the entranceway to New York Hospital. (If they had a Frequent Patient program, we could all get our appendixes taken out free).
The day we took Dylan home from the hospital was my last day of chemotherapy. It should have been a double victory, a cause for a double celebration, but stopping the chemicals didn't stop the side effects. My hair had begun to fall out in earnest. I didn't go completely bald but it came out by the handful and got so thin the best I could've done on my own was a half-Giuliani. I found a great wig-maker, Broadway's best, if you've seen Hairspray you've seen his work, the work the folks who wear 'em don't mind you knowing about. You wouldn't believe the folks who wear his stuff who don't want it known. I won't tell and you can't tell.
When I did a pre-Oscar interview with Billy Crystal, whom I've known for years, his manager, whom I've known almost as long but hadn't seen in years said "At least you've kept your hair."
"Do you want it?" I asked. I took it off my piece, grey, bushy and perfect, and handed it to him.
I did an interview with Chuck Close, whom I consider America's finest living artist, at his one-man show at MOMA. He is in a wheelchair, paralyzed from the waist down and has virtually no movement of his hands below his wrists and he's still America's finest living artist. He's bald as a rock. He did want to give it a try so after the interview I took off my rug and put it on his head.. What we shared was the camaraderie of people forced to live lives they never imagined they could and surviving in spite of it, getting on with the pieces of our lives that are still whole.
In 1968 I did a story for the Los Angeles Times Sunday Magazine on Mickey Mouse's 40th Birthday. I interviewed Ward Kimball, one of Disney's "nine old men," one of the original animators on Snow White. He created Jiminy Cricket, among other things.
"You can recognize my house," he told me when he gave me driving directions. "There's a railroad car out in front."
I was expecting a cast-iron caboose with geraniums growing out of it, a two-foot tall planter behind a white picket fence. It was a full sized railroad car. He also had two working steam engines in the back. A mile of track. And a guesthouse filled with toy Mickeys and Plutos and The Goof (old-time Disney people always call him "The Goof").
I took my friend Terry Gilliam who was interested in learning about animation — this was long before Monty Python — and the first thing Ward showed us was how to get a cat looped on marijuana. If you're interested you put the cat in a paper shopping bag, blow some smoke into the bag and crunch up the opening.
He told us about Walt (old-time Disney people always call him "Walt").
"He wasn't much of an artist," Kimball said. "In fact he couldn't even sign his name. Not the stylized way it was drawn on the cartoons and the comic books."
When kids would ask for his autograph, he told us, Walt would say, wait, I'll do you one better, and get a photo of him and Mickey that one of his artists had signed.
Of course I put this bit of trivia into the story, and Kimball got into all kinds of trouble for it. I don't know, but I got the feeling that if he hadn't been the guy who created Jiminy Cricket he might have gotten fired. This is the kind of family secret you just don't tell the LA Times. I ended up writing a note saying I messed up just because I felt bad and didn't want anything to happen on my account to this very nice man who'd created Jiminy Cricket.
Kimball also said that Walt's genius was as an editor and a story-teller. This is true. When they brought Snow White back for a 50th anniversary release, I saw it twice in the same day, something I've never done before or since. I just couldn't believe it was as good as I thought it was. It is. Story telling so perfect Disney cut The Soup Song, a very funny bit that's one of the add-ons on the DVD. The song is funny, a Bavarian drinking song about soup instead of beer, the animation-almost complete, everything but cleaned and colored-is even funnier, Kimball directed the animation. It got laughs, it would get laughs, the easy decision would be to finish it and keep it in. But Disney, under incredible pressure and close to bankrupt, had the courage to cut it because he knew it hurt the story.
"I remember story conferences, Walt would act out all the parts, do all the voices." Disney's secret to great story-telling? Kimball knew the exact words. "'Just when things are going well,' he told us, 'bring back the witch.'"
I had about three great months. My hair came back. Darker. My colostomy was reversed. That was nice. It took major surgery and I had to figure out a new diet and relearn muscle control and Easter Sunday at friends I ran out of my diapers and had to borrow one of Dylan's, but life was getting better. My CT-scans were clean, I was getting better.
When Dylan was nine months old Ena had her first one person show. At Robert Miller, one of the top handful of New York galleries. The New York Times called her work "exceptional." The New Yorker, very impressed, described her delicate images of flowers and fauna as "the last things Ophelia might have seen."
Dylan was learning to walk and to talk. One thing I noticed, when I was able to notice, he didn't have much baby fat. He was long. He was the first person in my family, including second and third cousins and people who died in Pinsk whose pictures I'd seen but whom I'd never met, who could be called "lanky."
Dylan was happy and gurgling. Ena was painting. I was feeling good. Things were going well.
And the witch came back.
Excerpted with permission from Lessons for Dylan by Joel Siegel, Copyright, PublicAffairs, May 2003.