I just read Mike Celizik’s three poignant posts about his battle with cancer on msnbc.com. He is facing the end of his life with courage and grace. He loves life but has found some measure of peace in his final weeks. I hope you find inspiration in his essays as well.
ADVENTURES IN CANCERLAND
PART ONE: THE DIAGNOSIS
Mike Celizic is TODAYshow.com’s ace morning news reporter as well as a sports columnist for msnbc.com. He is known for his ability to write compelling, accurate stories at lightning speed, as well as for his trademark hat, which he never removes, even when appearing as a guest commentator on MSNBC.
This week Mike was diagnosed with T-cell lymphoma. As a dyed-in-the-wool journalist, his first instinct was: Report on it. Thus he is sharing this cancer journal with TODAYshow.com and msnbc.com readers as he turns his reporting skills to one his most difficult subjects: himself.
“Sloan-Kettering? How do you spell that? What city is it in? It’s not showing up in our system.”
This is not the way I wanted to begin my Adventures in Cancerland.
The diagnosis had been confirmed on Monday. That big lump in my groin that the doctors insisted on calling a “mass” was not, as initially suspected, a hernia. It was instead an enlarged lymph node, a manifestation of non-Hodgkin’s T-cell lymphoma: cancer.
Now it’s Tuesday, and I’m calling my health insurance provider, UnitedHealthcare, to find out if they cover treatment at Memorial Sloan-Kettering Cancer Center in New York City.
My doctor friends told me it’s the only place to be treated. It’s world-famous. So I’m more than a little flustered when the helpful representative keeps asking me if I can be more specific. It makes me wonder what reply I would have gotten if I’d asked about a really obscure hospital like, say, the Mayo Clinic.
When I got my diagnosis, I e-mailed Bob. We hadn’t exchanged more than a note or two in years, but he slathered advice and help on me, for which I can never adequately thank him. A good man.
He suggested I tell everyone that when you go into Cancerland, there are four keys to treatment. They are:
- Always get staged properly first. Not doing so leads to the wrong treatment countless times.
- Always go to an NCI (National Cancer Institute)-designated center. You find the best trials, protocols and experience there. Countless lives are lost otherwise.
- The first step is the most important. Some local doctor may give you a well-meaning treatment, but totally disqualify you for trials.
- Biology is everything. It’s much more important than stage. The biology tells you everything about how to treat — and how hard it is to treat.
So far, so good. I know what’s wrong with me, I know where to go to get it fixed, and I’ve got a friend sweeping away the red tape. Now on to the icky stuff.
Lots of questions
As I told Dr. Robert Feldman, the most excellent surgeon who rooted around in my “inguinal mass” (that sounds so much nicer than “groinal lump”), I’m not going tofight cancer — I’m going to get it treated. It’s the same thing I’d do if the transmission dropped out of my beloved Alfa Romeo Spider: Find the best mechanic and get it fixed.
Still, there’s fear. A lot of it.
Despite the spectacular advances in treatment since I was a kid — when cancer was, more often than not, a synonym for “get your affairs in order” — the word still has chilling power. Just having someone with a stethoscope around his neck tell you that you have it changes everything. You go from thinking about how good you feel to how miserable you’re going to feel.
You find yourself diving into Google and Bing, trying to figure out which of the many varieties of lymphoma you have and what the odds of recovery are. (To save yourself time, go to cancer.gov — the site of the U.S. National Institutes of Health’s National Cancer Institute, and the single best starting site for cancer of every ilk.)
You send out e-bombs to your friends, searching for anyone who knows anything about cancer. Sleep doesn’t come as readily nor last as long as it did before you heard the dreaded word.
You’re filled with questions. The first is “Mother of mercy, is this the end of Rico?” although not in those exact words. Is surgery involved? Chemo? Radiation? Can I keep working? Can I wear my hat in the CT scanner?
You hope that if things don’t work out, you’ll have time to do a bucket list, and then you worry about what to put on it. I decided it would be negative thinking to start one. But if it comes to that, the first item is a round of golf at Augusta National and another at Pine Valley. (I’d throw in Pebble and the Old Course at Royal St. Andrew’s, but I don’t want to be greedy.) Feel free to issue an early invite. All offers will be leaped upon.
Quality of life
What makes it so jarring is that once you learn you have cancer, you suddenly realize you’ve had the symptoms for a long time. In my case, I balance that out with the knowledge that even if I’d gone to a doctor earlier, there’s little chance the early symptoms would have raised any warning flags. It showed itself in its own time, and there’s no use in wondering what I might have done differently. All that matters is what I do now.
A few months ago, other than an annoying and itchy case of eczema, I felt remarkably well for a person who schedules a doctor’s appointment every 10 or 12 years whether I need it or not. Then I woke up one morning with a lump in my right groin.
I called my doctor, Dennis Scharfenberger, and scheduled an appointment. He’d last seen me in 1997 after I’d finished treating a case of prostate cancer into submission. I had the prostate surgically removed, and having had no real ill effects and no other obvious problems since, I hadn’t been back.
Yes, I know that’s stupid, but it’s also the way it is. You can change it in your own life, and I recommend that you do. And I’ll deal with it in my life without beating myself up over things I can’t change.
Dennis is one of a dying breed — a small-town primary care physician in a world of specialists . He works incredibly hard, and genuinely cares about his patients. He’s at the bottom end of the health-care system, where the pay isn’t all that great and the malpractice premiums are crushing. He keeps at it because it’s important work. He makes a real difference in a lot of lives.
He doesn’t lecture me about my health habits, even though there’s plenty of grist for that mill. He knows I live by the philosophy of the late Charles Kuralt, the great chronicler of Americana and star of the CBS feature “On the Road,” who once said, “The Interstate highway system has made it possible to go from sea to shining sea without seeing anything.”
Kuralt, the story goes, was told by his doctor that he had to quit smoking, cut out the martinis and stop eating so much rich and fatty food.
“Why?” Kuralt asked.
“Because if you don’t, you’re not going to live much longer,” the doctor told him.
“Why would I want to?” he replied.
Kuralt died in 1997 at the age of 62 — not much older than I am now. He might have lived longer had he listened to his doctor. He would not have lived better. There’s something to that.
Anyway, Dennis palpated my mass, which is what doctors call it because it sounds nicer than “felt it up,” and agreed it could be a hernia. He also sent me for an echocardiogram, did a bunch of blood work, put me on blood pressure medication, and did an EKG.
Everything came back normal, which is what I expected. I didn’t feel sick. Why should I be sick?
Dennis also referred me to the surgeon, Dr. Feldman, who finally slipped me into his schedule in early June.
I had the biopsy under local anesthetic on June 10 in our local hospital, St. Anthony’s of Warwick, N.Y. The following Tuesday, June 16, Feldman called me to tell me the preliminary diagnosis was lymphoma. There are a number of brands of the disease, and he’d be able to tell me more in a couple of days.
As a contributing sports columnist for NBCSports.com, I was going to Long Island to cover the U.S. Open the next day, so I had to put off a return visit until I got back. The lymph node, which wasn’t happy about having been surgically violated to start with, really didn’t appreciate my traipsing up and down the hills of Bethpage Black. My thigh swelled up to about twice its normal size, but at least it didn’t hurt.
That’s another problem with this thing: I don’t intend to lie around in bed all day just because I might get tired more easily. I’m also not begging off work. I like my job, I like the people I work for and with. Despite what my wife might say, I don’t like sitting around doing nothing.
I guess it’s fortunate then that idleness looks neither likely nor possible. Diagnosis Monday. Authorization Tuesday. Consultation probably before the end of the week. Time sure does fly when you’re not having fun.
One more thing. I considered keeping this to myself. That was the Celizic Way when I was growing up. But where’s the fun in that? Usually, I write about other people’s misery. Why cheat myself out of a chance to write about my own?
Of course, there are disadvantages to telling people. One is that you get a lot of well-meaning advice along the lines of, “Not everybody dies of that, you know.” It’s not really helpful.
There are also advantages. By coming out, you gain the freedom to tell people what you really feel. Making everyone happy just doesn’t seem that important any more. Being honest with them does.
And the best parts of getting cancer?
I’ve already found that I have remarkable and wonderful friends. The people I work for and with are among them.
I’m also getting a lot more hugs. I used to think I didn’t need them. I was wrong.
ADVENTURES IN CANCERLAND
PART TWO: LUST FOR LIFE
You know how you get this incredible rush of adrenaline when you ride a roller coaster or drive really fast or look at danger in the face and don’t blink?
Cancer can do that to you, too. If there’s been a total surprise in the month since I’ve been diagnosed with non-Hodgkin’s T-cell lymphoma, it’s the night I realized how much it energized me.
The realization came, as so many brilliant insights do, after several beers. It was on Wednesday, June 24 — darts night at Yesterday’s Pub in beautiful downtown Warwick, N.Y. An old darting buddy asked me how I was feeling, and I decided to tell him the truth: I had cancer.
That brought the darts to a screeching halt, which was a good thing for me; I couldn’t hit the inside of a barn with a handful of gravel that night and was glad for the break. My friends were concerned. I needed to talk. So we ordered another round and talked about life — and the possibility of it ending.
Lust for life
“I know this sounds weird, but I kind of like the feeling,” I heard myself saying.
They looked at me as if I had just said, “I think I’ll retire to North Korea.”
I was as surprised as they were. The thought had hit me just that moment, like a sledgehammer. And at that moment, I meant it. Knowing that I was facing a disease that could kill me had given life an immediacy and clarity it hadn’t had for a long time.
I had been noticing the symptoms, but hadn’t put it all together and slapped a label on it.
I found myself standing on the porch at night looking at the fireflies blinking in the darkness with a fascination I hadn’t felt since I was 4. Going to the grocery store was an adventure. Old familiar scenes took on new depth and richness. Everything I saw was etched in exquisite relief. Everything I did was as if for the first time.
Cancer, in those early days just after my diagnosis, was a rush. I wasn’t thinking about the months of tests and treatment I would have to undergo, but about how I’d let the weeds and creepers overtake my life.
I’m what you could call indolent (that’s a procrastinator with an overblown sense of self-importance). My jobs are deadline-driven, and when the stories are in and published, I tend to fall back into something of a torpor. There weren’t many things that couldn’t be put off until the day after tomorrow.
It’s nice to talk about living each day as fully as we can, but that’s harder for some of us than for others. We look at the future and see too many tomorrows and tomorrows and tomorrows creeping in their petty pace to the last syllable of recorded time. It’s called a rut, and I’d fallen into one.
I enjoyed my work and my home and my family, and smoking ribs and salmon and chicken in the backyard on long, lazy Saturdays. But I was just ticking off the days instead of really living them.
Don’t get me wrong. “Exciting” and “fun” are not synonymous. Cancer is not in any way fun. On the whole, I’d far rather be in Philadelphia.
The adrenaline rush didn’t last. There was a full day of testing — PET scan, CT scan, bone marrow sample, consultation. Then a trip to the emergency room because the contrast agent for the PET scan didn’t agree with my kidneys. (Lesson learned: Any time you get injected with something that arrives in a lead box, it’s not always going to be good.) Another day, another trip to the ER for blood tests.
I’d actually felt pretty good right up until I walked into a hospital. I went from never seeing a medical professional to personally interacting with at least 11 in one day. The various people poking at me seemed to be going in different directions, too. My kidneys were scanned twice in the same day for no particular reason other than that somebody thought it was a good idea, which it wasn’t. Doctors were conducting turf wars, and I was the turf.
I’m not going into any more detail than that. There’s nothing more depressing than the play-by-play of medical procedures. Suffice it to say that within two weeks of telling my pals how energized I was, I was actually starting to feel sick.
I should be. Dr. Ariela Noy, my oncologist at Memorial Sloan-Kettering, told me if I did nothing to treat my cancer, I’d be dead in six to 12 months. So the clock is ticking. I should be getting sick.
The road ahead
I start treatment on Monday, July 20. Chemo.
Bad news: My hair will fall out.
Good news: That includes ear hair.
Bad news: Nausea.
Good news (don’t tell anyone): Medical marijuana.
Meanwhile, I’m reminded every day that next year is no longer important, at least not to me. What matters is the instant, the eternal now that I last regularly inhabited when I was an infant and everything was new and endlessly fascinating.
It’s going to be expensive, even with pretty good health insurance. I can’t worry about that.
I might miss work — and paychecks. Can’t worry about that either.
Instead, I’m going out to Vegas today for a long weekend. A good friend is celebrating his 50th birthday and got a great rate at a nice resort in Henderson, a short ride from The Strip.
Last year, I probably wouldn’t have gone. I would have come up a lot of very good reasons to stay home.
But with chemo around the corner and months of what the doctors call “discomfort” and you and I call “pain” ahead, I decided I’d better go. I’m taking the golf clubs, and I’ll figure out a way to swing them.
I gotta live today. It’s the only day I have.
A HAPPY BIRTHDAY DESPITE GRIM NEWS
The lymphoma we’d thought we’d beaten into remission back in May came roaring back last month. We threw some really nasty chemo at it. The cancer ate it up and came back for more.
And so I’m going to die, and not in four or five months. I’ve got probably a couple of halfway decent weeks left. Then the lymphoma will take over my bloodstream and kill me.
I don’t have to die that quickly. I could undergo months of brutal and debilitating chemo that will leave me racked by pain and barely in control of what few senses I have.
The chemo itself could kill me. And even if it didn’t, I wouldn’t have a single day when I’d feel even vaguely normal. I would then have to get a bone marrow transplant — if a match could be found. There’s about a 10 percent chance that I’d survive, and a smaller chance that I’d be cured.
Taking that chance might be worth it to some, but not to me.
The object isn’t to live as long as you can, but as well as you can. I’ve lived very well; had a grand and glorious life. I’ve done everything I’ve ever wanted to do except meet Al Roker. I’m not afraid to die. But I don’t want to die, and there’s the problem. I love life, love this glorious planet, love simple pleasures, love living.
I learned my situation Wednesday. I’ve spent a lot of the time since crying like Glenn Beck, only for real.
But there’s no other choice for me. It’s about controlling what life I have left. Enter treatment, and you surrender all control for a tiny chance of survival at a diminished capacity.
I already tried that. I’m not going to do it again.
So I’ve made the most personal decision I ever will make. It’s taken every ounce of my courage and 40 years of philosophizing and thinking and reading and traveling and learning to make. The easy choice would have been to go into chemo. For me, it would also be the wrong choice.
I’m writing this because I owe it to all the wonderful people who started reading the blog I started when I began treatment for lymphoma last year. It was called “Adventures in Cancerland.” I wrote two really swell entries, I say with no modesty at all, full of insight and humor and perspective.
Then I quit.
Sorry about that. It wasn’t that I didn’t want to write; it was just that I was waiting for an adventure, and one never presented itself. Getting treated for lymphoma turned out to be as tedious as picking cat hairs off a cashmere coat. It was not exciting. The painful parts weren’t that painful. Nothing gruesome happened.
I left the hospital in December, spent three months in isolation at home, and was cleared to return to real life. Sometime in May, I was officially in remission.
But it didn’t last long. The cancer came back in July, and this time it’s not messing around.
My oncologist, Dr. Ariela Noy, came into my room early Wednesday here at Memorial Sloan-Kettering Cancer Center in New York City. She’s an extraordinary doctor and person; tenacious, dedicated, talented, caring — name a quality you want in a doctor, and she’s got it.
It was my birthday, and she fidgeted as she told me the situation. We’d talked about this scenario, and she wasn’t surprised at my choice. I did promise to sleep on it, and then we had a good hug and cry. (I’m not usually given to crying, but this has opened the floodgates.)
I called my wife and told her. I promised to sleep on it, and she promised to come in today to collect me and my belongings.
I sent some e-mails to some close friends. One, Joe, e-mailed telling me to hide the nurses and be ready for an 11:30 a.m. visit. He showed up with major contraband: a huge bacon cheeseburger with wedge fries, an ice-cold Corona and cups and plates. My nurse, who should probably remain nameless, thought it was pretty funny.
I could only manage about four sips of beer, but the first one was the most perfect beer experience of my life. After six weeks without one, the hops exploded on my palate. There was barley, a perfect, cold crispness; it was the best beer I’d ever tasted.
It was the same for the burger. Juicy goodness with bacon and tomato and lettuce, salt and pepper. I only managed about five bites, but after three weeks of pudding cups, I was in heaven.
We went up to the 15th-floor terrace to sit in the sun. I smelled cigarette smoke — a good smell for me — and it was coming from a cancer patient in the farthest corner. I had given up smoking when I was first diagnosed a year ago, but there’s no point to that now, so I bummed a smoke.
For a day that started out with “You’re going to die,” this was turning out all right.
I went back to my room, Joe went back to work, my nurse grinned at her naughty boy. About an hour later, she came back in carrying a birthday cake, leading all the nurses and aides on the floor as they sang “Happy Birthday” to me.
I totally lost it. When she came back later with a bunch of birthday balloons, I was reduced to a soggy mess.
When I could talk, I told my nurse friends, “This is one of the best days of my life.”
I never thought I’d say that about the day I learned I would die, but it’s the absolute truth. The big things are great and memorable, but it’s the little, unexpected pleasures that make life so wonderful.
I’m going to miss it. Terribly.
Mike Celizic passed away September 22, 2010 at the age of 61.
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SEE EVERY MOMENT AS A GIFT
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