Pirates of the Caribbean: Dead Men Tell No Tales
Been there, plundered that.
Joel Siegel wrote the following for an American Cancer Society newsletter:
You probably know me as the movie critic on "Good Morning America."
What you probably don't know is that I was first diagnosed with colon cancer in 1997.
The cancer was much advanced and more serious than the doctors had anticipated. It was followed by a horrific bout of chemotherapy and simultaneous radiation (treatment has improved tremendously since then) and a temporary colostomy. Two years later it showed up in my left lung, a year after that in my right lung. I've been through five surgeries, four different chemotherapies, two bouts of radiation, two emergency hospitalizations but I've worked and been on the air through most of it, and I'm still here.
If you're reading this you're either beginning treatment for colo-rectal cancer yourself or your very close to someone who is, and I'm pretty sure I can help. I can't offer any medical advice, I'm not a doctor (and I've never played one on TV). But I have been there, done that, most likely more than once.
RULE NUMBER 1: TRUST YOUR DOCTOR
Which means you're responsible for finding a doctor you can trust. Rule number 1 supersedes all other rules and every anecdote and piece of advice in this note.
RULE NUMBER 2: BE A GOOD PATIENT
After all, it's always a good idea to be nice to someone who may be coming at you in a few hours or a few days carrying a knife and wearing a mask.
But try to remember to be a good patient, too, to the nursing staff and the people who come in to take your blood pressure and help you to the bathroom.
They know you won't always feel like it, but when you can a smile and a "thank you" can mean a lot.
WHY DO DOCTORS MAKE THEIR ROUNDS SO EARLY?
Because they work the rest of the day.
Family members, if you have questions to ask — and you will — ask at the Nurses' Station when your doctor usually makes rounds and do your best to be there.
It's OK to write your questions down on a piece of paper. Doctors, residents, nurses, interns won't think you have no memory, they'll look at this as a sign of how much you care.
But keep in mind one of journalism's most important rules: never ask a question you don't really want to know the answer to.
WHY IS MY TREATMENT DIFFERENT THAN MY FRIEND'S OR THE FRIEND OF MY COUSIN'S WHO ALSO HAS COLON CANCER?
It may be as simple as when you are treated. Treatment really has improved tremendously in the past ten years. There's another reason: medical science has learned that cancers are like snowflakes.
No two are the same.
OK, you're thinking, he's gone too far this time. I never really liked his movie reviews and now he's trying to tell me cancers are like snowflakes?
But, as far as we know, each person's cancer is unique. Even though you all have colo-rectal cancer yours is not exactly the same as anyone else's.
Chemotherapies may affect your individual cancer differently; one reason doctors may alter dosages or even change protocols (a word they use to try to confuse us that they use to mean the specific amounts of chemo and other meds you're being treated with).
It's also the reason when people tell you, and people will, "My aunt had a friend, I think she had colon cancer, too. She found this great tea in a health food store, swears by it!"
Listen politely, thank them for their concern, and return to Rule Number 1.
After the first few, or dozen, or hundred similar pieces of advice you probably won't be so polite.
FIRST QUESTION: WILL IT HURT?
I've got very good news. It won't.
That's also one reason so many cancers are so difficult to detect. Most cancers, of and by themselves, don't cause pain until they grow large enough to push against a nerve or push against a bone or muscle that will push against a nerve. I told you this was an insidious disease.
If you do feel pain, move immediately to Rule Number 1, do not pass Go, do not collect $200.
Pain is very easily treatable. In fact most hospitals have pain management teams filled with people who truly know what they are doing.
Keep drinking. In the hospital and especially at home. Your immune-system needs all the help it can get and this is one easy way to help it.
I don't like water, I don't know why I don't like water, maybe because I grew up in Los Angeles where tap water tasted like it was pumped directly from the La Brea Tarpits.
I drink Gatorade and its clones, Vitamin Water and its clones, I drink a whole bunch of diet supplements because my appetite is shot and my taste buds are shot and I know I need the nutrition. And the hydration.
One afternoon, after lunch yet, feeling just terrible, I had to lean on my friend Mikey because I wasn't able to walk three blocks to my oncologist's office.
The doctor took a look, took some blood and called an ambulance. I spent six days in hospital being re-hydrated. I haven't let that happen again.
Usually lives up to its reputation. If you're the patient you may not care, you'll be getting most of your nutrition through IV and your taste buds may be shot, too.
But if you're family the food will drive you crazy. Or to the nearest drive-thru, which is OK, too.
My hospital of choice decided to outsource its patient food services a few years ago.
Everything comes prepackaged, even breakfast. You can get a muffin, you can get cereal, you can request just about anything that can be packaged between two pieces of plastic. But bacon and eggs? Fuggedaboudit. And even to us Jewish guys there's something comforting, something that says "everything is going to be allright," that can be devined from the sizzle and smell alone of bacon and eggs, first thing in the morning.
Most hospitals allow food deliveries. Ask at the nurse's station.
And ask where they order in their dinner.
YOU'RE GOING TO HEAR AN AWFUL LOT ABOUT HOW HEROIC YOU ARE. AND BRAVE. I FEEL MORE LIKE A HOSTAGE.
Good friends, people who've known me 50 years and who know it's not true tell me how brave and strong I am, how I'm a hero in their eyes.
What I want to say to them is: If I'm so strong and brave and such a hero, why did you always make me play right-field when we played baseball?
In a conversation with another long-term cancer survivor whose kind of cancer forced him to go through a lengthy and painful series of facial surgeries, we agreed on how we honestly think about ourselves. As hostages.
"Hold out your arm."
"I'm going to pump you full of lethal chemicals and make you sick as a dog and you're going to lie there and take every bit of it. And do you see that 15 foot plastic hose? Guess where it's going to go!"
And we do what they tell us because we figure it's our only hope of getting out of there.
Remember the early news footage when Hurricane Katrina struck? ABC News had it live and must've run the videotape a hundred times: a fat lady on the roof of her house, a Coast Guardsmen in a SCUBA suit being lowered from a helicopter via steel cable. He hits the roof, right on target and grabs the fat lady who holds on for dear life as the cable is raised and they're pulled into the chopper.
Well, I'm the fat lady, holding on for dear life.
I've been doing it pretty well, too. Though maybe there are some things it's better your friends don't know.
WHEN FRIENDS ASK "WHAT DO YOU NEED?" AND YOU DON'T NEED ANYTHING, MAKE UP SOMETHING.
It's tough for friends and family, people who love you, to watch you go through this and not feel like part of the process.
The truth is, of course they are. Having someone to kvetch to, seeing a familiar face, just hearing the sounds of human activity when you're sick and tired and half asleep is some of the best medicine you will receive.
But asking someone to pick up some tea, or some soup or pie from this out-of-the-way joint or bring you a DVD of a movie you missed makes them feel so much better.
THE POWER OF PRAYER
No theology. a statement: next to holding your newborn child, there is no experience like fighting a life-threatening disease to create absolute awe at the miracle of life.
And two stories:
Shortly after we discussed my cancer on "Good Morning America" and a story on Dylan and me ran on "20/20," I flew to Los Angeles. When I got back to New York there was a letter from one of the stewardesses on the flight. Her eight year-old daughter had seen the stories and added me to the list of people she prayed for every day. I was very moved.
The mother had to know I wasn't Christian, it didn't make any difference.
I've since received a number of prayer cards, notes from church-goers who've lit candles for me. They all mean so much.
One afternoon I was trying to hail a taxi at 58th and Park. I have no idea why I remember the intersection. What happened was a cab with a fare who was getting out stopped just in front of me. The fare, it turned out, was a Roman Catholic Priest. I'd had a tough morning at the doc's that day, introduced myself to the priest.
"I recognized you," the priest said.
"Then you know I'm not Catholic."
"But I've had a real tough day today and, Father, could you say a prayer for me?"
I'm sure he did. And he called me "Son."
No theology. I believe what I believe and I truly want you to believe what you believe but ten years ago I would have bet anything I'd flap my arms and fly before I'd ask a priest to say a prayer for me.
THE CHEMOTHERAPY COCKTAIL
That's what doctors call the mix of meds they drip into your veins. I love that phrase. "It's not the chemo, Joel, that's not even tough part. The real tough part is getting that tiny paper parasol with the little piece of pineapple on the top into your bloodstream."
Truth is, even if they did that, for me, at least, it wouldn't have been the tough part.
You may not have any. I've met people who just breezed through their course of chemo.
I wasn't that lucky.
Not that I'm complaining. What they gave me worked. I'm here.
But it wasn't easy.
The way I understand it, most chemotherapy is designed to attack the fastest-growing cells in the body. Cancer cells are very fast growing.
But so are hair follicles, certain cells in our mouths and much of the "fauna" in our GI tracts. Which may explain some of the following. Or may not.
SIDE-EFFECTS I'VE HAD TO DEAL WITH
These may affect you, they may not. Don't forget Rule 1, but don't forget that your doctor can't possibly predict what side-effects you'll face, when you'll face them or how severe they may be. Even people on the same dosage of the same drugs won't have the same response.
Me, I seem to get everything.
Some of the side-effects are so innocuous you won't connect the symptoms with the chemotherapy. Hmm, broke another nail.
But it's got to be better to know than not.
My hair never fell out. It thinned out. It turned orange (OK, so I dyed it brown and the brown turned out orange).
The first time around, on 5FU with Leukovorin, the only chemo effective against colon cancer in 1997, I wore a wig when I was on TV. I interviewed Billy Crystal, who even back then I'd known for years. His manager said "At least you kept your hair!" I said, "You want it?" And took off my wig and gave it to him.
This last time around my hair turned snow white and very thin. It's bad enough when you look in the mirror in the morning and your father looks back, this time it was my grandfather. I wouldn't have been surprised if I'd started speaking with a Yiddish accent.
The good news was I didn't have to shave every day. Or every week.
The better news was: it always came back. And it came back thicker and darker.
Be prepared to be frightened, maybe sickened, the first time there's more hair on your hairbrush than there is on your head, but you do have options.
If you decide on a wig, get the best wig you possibly can. Perhaps there's a cancer organization that can help.
The HIV folk have made baseball caps over bald-heads OK for sick people and well people.
You can shave your head close.
You can go bald.
The last two options have become fine for women, too.
We've come a long way, baby.
"Why is your hair so short." I asked. "Forgive me but aren't you a little old for Joan of Arc?"
At least I got a laugh before I got a very matter-of-fact, "I'm on chemotherapy."
I was embarrassed. She wasn't. And this was 1991. And she was Jessica Tandy.
OH, OH, I BROKE ANOTHER NAIL
As a matter of fact I did, the afternoon I wrote this, while I was obviously putting the forefinger of my left hand in harm's way, putting my hand in my pocket.
I must've broken half-a-dozen fingernails before it occurred to me that it might have something to do with the chemo. Turns out it does. (And a drug called Erbatux is notoriously hard on nails.) But, come on, who among even the people who love you most is going to say, "And on top of everything else he's going through, he broke a fingernail!"?
I'm sure your local drugstore has an aisle filled with nothing but potions to strengthen your nails, glues to mend them and plastic prosthetics to replace them if you're so inclined.
I didn't bother.
I LOST MY SWEET-TOOTH, I CAN'T DRINK ANYTHING FIZZY AND WINE TASTES LIKE WORCESTERSHIRE SAUCE
It's the taste buds. The chemo attacks them and there's no way to predict how that's going to affect you. Here's what's happened to me:
Instead of cool and refreshing, any kind of mint flavoring tastes bitter and sour.
No more Crest or Colgate, I brush my teeth with Dylan's Sponge Bob Square Pants Bubble-gum Flavored Toothpaste.
I can't eat anything spicy, I have no desire to eat anything sweet. That I really don't understand. I love dessert, at least I used to. Fruit, ice cream, cake? Uh-uh. And I want to eat this stuff because I've lost too much weight.
Tea with honey is the last holdout. And rice pudding, but I think that's because of the texture, not the taste.
I can't drink soda, I wouldn't try to drink champagne. The bubbles sting.
I was warned when I started one type of chemo that a common side-effect was an increased sensitivity to heat and cold (see Rule Number 1), to the point where I was advised to have a pair of gloves or a potholder handy when I took something out of the refrigerator. My hands stayed OK, but the day after I began that chemo I sipped a diet Coke at a restaurant and damn near screamed. It wasn't just cold, it felt like Peter Billingsley, the kid in "A Christmas Story," when he stuck his tongue on the flagpole in the middle of winter. Wow.
A year later I can drink right out of the bottle, right out of the fridge, but it took a year.
And to prove what an insidious disease this is, to me wine is one of life's great pleasures. I have a cellar. Nothing fancy, it happens to be a real cellar, but it has a lot of wine that's been sitting in it for 15, 20 years. To me it really does taste like Worcestershire Sauce.
What's the proper toast when you lift a glass of Worcestershire Sauce?
Skoal? Le chaim? Cheers? A votre sante? Salud? How about "Feh! This '82 Mouton tastes like Worcestershire Sauce."
It's medical talk for "running nose." Do ask your doctor if it happens to you. And find out what you should take. I didn't ask, I didn't take, I figured it was no big deal and it became a big deal. Everything dried out. You've got mucus? I had stalactites and stalagmites.
It's easily treatable but it's one more inconvenience you shouldn't have to deal with.
And neither should I.
And because our resistance is so low and our immune systems are so fragile, healing anything — even a running nose — can take weeks instead of days.
(And it's especially uncomfortable and uncomely on a guy with a mustache.)
It's going to happen, be prepared. And don't let yourself get dehydrated.
Some of it's because I haven't been well enough to exercise, some of it's because I've lost so much weight (about 50 pounds), some of it's because I don't get enough nutrition and some of it is caused by the chemo, some by the disease, but sometimes I am so weak I can't open the cardboard cartons from the Chinese restaurant.
Don't be surprised if you try to lift a box you put on a shelf before your treatment started and you can't lift it. Assume everything is three times heavier than it looks. Coming home with the groceries is going to be a chore. And try to do some back stretches each day. I do the simple stretches in a book called "No More Aching Back" by Dr. Leon Root and, thankfully, haven't had any back problems in years.
Also I keep a pair of pliers in a kitchen drawer and a screwdriver I use as a lever to pry open plastic packages. And I have two jars of Tiptree Little Scarlet Strawberry Preserves and one jar of quince preserves I can't open. I'm too embarrassed to ask anyone to open them for me. Now, when no one is looking, I make sure I can open a jar in the supermarket before I take it home.
According to the dictionary it's a "disease or dysfunction of nerve endings that causes numbness." It's common among diabetics, caused by poor circulation.
With us it's not dangerous but it's absolutely the most irritating, aggravating and annoying side-effect I have to put up with. And I've been putting up with it for two years now, ever since they started me on a chemo cocktail called FolFox. The "ox" in FolFox stands for Oxyplatin, a very successful chemotherapy that shrunk my tumors down to almost nothing, but Oxyplatin more often than not causes neuropathy, tingling and numbness, in your hands and feet.
You feel like your feet are "asleep." I feel like I did when I was a kid at State Beach in Santa Monica and would bury my feet in the sand. Except I feel like that all the time.
I have trouble walking. I've fallen down in public places (it's only happened twice) because I couldn't feel the floor under my feet and didn't know where the step came.
My last flight to and from LA I kept my shoes on because my feet feel the same whether my shoes are on or off. I've rearranged my bedroom furniture so if I wake up in the middle of the night, stand up and start to stumble because I can't feel the floor beneath my feet (this happens regularly), I'll be able to put my left hand on a bureau and stop the fall.
WHY NEUROPATHY IS THE MOST ANNOYING SIDE-EFFECT
It's certainly not the most dangerous. In fact, in the abstract, it's kind of silly, except my feet aren't numb in the abstract, they're numb all the time, every minute of every day.
Denial had been one of my best weapons against my cancer. I went about my life and just didn't think about it. I'm good at denial, ask my wives, I'm great at denial. I think most reporters are. It's very easy for me to adopt a completely different persona when I'm working. I become an observer, not a participant. And as an oberver I'm invulnerable.
The real Joel Siegel, for example, is afraid of heights. But as a reporter I've interviewed billboard painters standing on flimsy scaffolding 60-feet high. On New Year's Eve I've sat back and leaned over the edge of the 1 Times Square Building. and I'm certain it's true for most writers and reporters. "Disassociation" is the psychological term and I'm not sure whether it's cause or effect but I think most reporters — and writers — do this. Perhaps it's one reason the mortality rate for reporters is so high in war zones like Iraq.
But I can't deny my neuropathy. It is there all the time and it's getting worse. My feet are numb from the soles to mid-calf and my hands are starting to tingle — the waking up after they've been asleep feeling. The other side-effects are temporary, some permanently temporary, but the neuropathy will not let me forget I have cancer.
Medication? Like most meds that deal with the side-effects of cancer medication, they are "step-meds," developed for similar symptoms caused by other diseases. Virtually all cancer research funding goes to find a cure for the disease, which certainly makes sense. It's triage, set up a priority, first things first.
There is a med, used by people with shingles, that can stop the pain neuropathy causes. My problem is my neuropathy doesn't hurt, it tickles. There are no meds to deal with and I'm fairly certain there won't be for a long, long time.
Even though it is my worst side-effect I'd rather have the drug companies and the cancer community spend their research dollars on curing lymphoma and leukemia and lung cancer. My feet are numb, not my head.
You get tired, you take a nap. Get a good night's sleep. Take a vacation.
This is different. An unfortunately common side-effect of chemotherapy and radiation, this is tired beyond tired.
When I was in the Army I did my basic training at Fort Bliss, Texas, near El Paso.
One morning the sergeants screamed at us "All you guys you hate Texas raise your hands!" It was July. It was hot. We were carrying 40-pound packs and entrentching tools and wearing steel helmets. When it got to be above 90 the army let us unblouse our boots and unbotton our sleeves. It was above 90.
We all raised our hands, cheered, screamed, hollered, shouted — and learned why the army rule is "never volunteer for anything."
That day we marched to New Mexico.
Oh, yeah, I was tired. The fatigue caused by chemotherapy and/or radiation is worse.
Not even in the same league.
This is a tired, an inside-out kind of tired, a too tired to breathe deeply kind of tired, a tired like Luis Bunuel's "Un Chien Andalaou," a dada film classic, where the character is trudging across a room dragging everything he'd ever owned tied to his back — read his soul. It's meant to be an illustration of Freudian psychology. It's just as valid an example of chemo-induced fatigue.
A shrink I know says it took her a long time to understand; when a patient told her he'd wait on a corner and pray for the light NOT to change because he wasn't sure he could make it across the street, she began to understand.
I fancy myself a pretty natty dresser, but I will, of a morning, wear a shirt I really wasn't planning on wearing because it's closer than the shirt I wanted to wear.
I love browsing through bookstores — and buying books. ABC offices are directly across Columbus Ave. from a very inviting Barnes and Noble. In a one year period I made it into the bookstore twice.
I have yet to be too fatigued to go to the bathroom but, just in case, I'd be careful walking behind me.
The great comedy writer, Larry Gelbart, said "They tell you when you get old the knees are the first things to go. Uh uh. It's the word for 'knees.'"
And that's for normal people. With chemo brain, multiply normal memory loss by a factor of, oh, I forget how many.
A few weeks ago I ran into my ex-mother-in-law (ok, one of my ex-mothers-in-law) at the movies. I could not remember her name. And I like her.
I have no memory of us putting in a hospital bed to help with the 24/7 infusion of my first bout of chemo.
Because I'm on television it's not unusual for people who's names and faces I don't know to come up to me and say "Hello, Joel," and ask how I'm doing. These days more and more of those people whose names and faces I don't know are people I've been working with at ABC for five or ten years.
The New York Times did a piece on it so it must be real. Some of the chemicals they give us to kill cancer cells also destroy brain cells; memory loss is the most common symptom. Following the "never ask a question unless you really want to know the answer" rule of journalism, I have not asked my oncologist if the cells regenerate and the memory returns because I don't want to watch him hem and haw over the best way to phrase "We don't know because no one has lived long enough yet."
When I started Folfox with Atavastin, which had become the second line of chemotherapy for colo-rectal cancers, my oncologist hand-wrote a list of 14 prescription drugs I was either on or should have available if the drugs I was on weren't effective. Four were to combat nausea and that didn't include a fifth anti-nausea drug that was given to me intravenously as part of the cocktail.
Maybe I'm allergic to parasols.
The drugs work differently on different folks, which is why I was prescribed four different drugs, some of them hugely expensive. One of them made me twitch uncontrollably. I called a friend who's a doctor, turns out Parkinsonisms are known to be a possible side-effect of that drug.
The drug that did stop the nausea took about half-an-hour to kick in, then it would put me to sleep. (A common side-effect of all the anti-nausea drugs is tiredness and fatigue.)
When the drug wore off I'd be nauseous again. What stopped the nausea was my going off the heavy chemo that caused it. Though I only vomited twice (which my doctors took as a good sign) I was so consistently nauseous I slept with a pot next to my head for more than a year.
I've lost 50 pounds in the past year, and the weight loss was as painless as could be. I wasn't hungry. I couldn't taste much, I didn't enjoy food, I had to remind myself to eat anything at all.
First time in 100 generations anyone in my family had those problems.
I figure the diet would do gangbusters business in Hollywood: the chemotherapy diet. OK, there is a 10-20% chance it'll kill you, but you can lose 50 pounds in three months!
They'd wait in line. They'd cause traffic jams on the 405.
To me I look like an extra out of "Schindler's List" but people tell me how great I look.
Advice: it helps to be 40-50 pounds overweight when you begin chemotherapy.
I'm on a drug called Erbatux. It's not chemo per se, it's one of the series of newly developed drugs that mess up the specific proteins the cancer cells need to multiply.
It works best in conjunction with a heavy-duty chemotherapy drug, the third line against colo-rectal cancer, but I decided to take myself off of that drug, it made me too sick, the side-effects were too severe.
It was possible, maybe even likely, that the Erbatux would not be effective on its own. I didn't want to know so I didn't ask. Turns out I'm lucky. On my cancer, at least, it is effective on its own. My numbers are down, my scans show either shrinkage or no growth.
Erbatux was developed by Sam Wachsel's company. He went to jail for stock manipulation. I ought to send him a cake with a file in it.
This was the stock that Martha Stewart, a friend of Wachsel's, was arrested over.
She'd bake the cake.
I go in once a week, the IV infusion takes an hour, the major side-effect here? Facial acne. Pimples.
I figure they make me look younger.
THE BEST SIDE-EFFECT OF ALL
A few weeks ago, in a fit of unbridled optimism, I went to see my opthamologist.
A few months before I spent 15 minutes in the drug store staring at the razor blades
trying to decide if I'd live long enough for it to make sense to buy the 12-pack, now I figured I'd be around long enough to get my eyes checked.
"A Miracle Man," my opthamologist called me.
A few months before my interenist had called me a "Wonder Patient."
All my doctors know each other, they're all at the same hospital, and I could only come to one conclusion. I called one of my closest friends, a surgeon at that hospital, and said "I'm supposed to be dead, aren't I?"
"Yes." He answered.
"When was I supposed to die?" I finally wanted to know the answer.
"Two to three years after you were diagnosed."
As I write this I'm two months away from ten years.
I've been through five operations, two bouts of radiation, four bouts of chemo, I've lost half my left lung, a third of my right lung, had the paracardial sack around my heart drained of fluid which turned out to be diseased. I was hospitalized on two other occasions, once because my white-count had dropped to dangerously low levels and once to fight an infection they think was a form of pneumonia. I lost 50 pounds. I can't walk up a flight of stairs without panting or open dinner from a Chinese restaurant without a pair of pliers. My feet are numb, my hands tingle, my fingernails break, I've developed a world-class case of jock itch, I've got worse skin now than I had when I was 14. My eyes burn, my nose runs, I'm able to function maybe 12 hours a day on a good day without collapsing from exhaustion.
When Dylan was three and four the post-op steroids they gave me managed to inflame my vocal chords and I was unable to read aloud to my son. I went through the entire year of 2006 unable to focus hard enough and concentrate long enough to be able to read to myself. But, my God, I'm here.
I've celebrated Dylan's birth and bris and nine birthdays so far. And I mean celebrated.
I know why Tony Snow, George W's press secretary, called his bout with colon cancer, "the best thing that ever happened to me." And why my friend, Gilda Radner said about cancer, "If it wasn't for the downside, everyone would want it."
The best side-effect of fighting a life-threatening disease is learning how to live.
When you're made frighteningly aware of how little time you may have left, learn what is important: family, friends and helping others.
Tell you what, let's make a date, I'll see you in ten years. We'll share a bottle of wine and go to the tailor's to get our clothes let out.
This message came to me from a reader named Peter Svensland. He and a fr...
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