I'm ready for a battle with cancer
Posted: Wednesday, June 24, 2009 1:11 PM
“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 which 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-Hodgkins T-cell lymphoma: cancer.
Now it’s Tuesday, and I’m calling my health insurance provider, United Health Care, 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, and 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 the Mayo Clinic.
Order is shortly restored, I am referred to United’s Cancer Resource Services, and I learn that Sloan-Kettering does, indeed exist. More important, I can be treated there. Within five hours, Cathy Schadel, a registered oncology nurse, tells me I’m good to go. She’s helpful and concerned and makes sure I have a chance to ask any and all questions. She asks if I need to talk to a counselor. I tell her I don’t. I’ve had cancer before. I know it’s not going to be the most fun I’ve ever had with my clothes off – or on. I also know I was born with a terminal disease called life. This is just one of the adventures along the way. It’s not one I’d choose, but here it is, so let’s have at it.
Besides, I’ve got a great friend in my corner, Dr. Bob Arnot, a.k.a. “Dr. Danger” and the former medical and foreign correspondent for NBC Nightly News. Bob and I were classmates at Notre Dame and spent a year together at the University of Innsbruck during our sophomore year abroad. I’m not saying when it was, but I will say that in those days, a liter of beer cost 24 cents.
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:
1-ALWAYS get staged properly first. Not doing so leads to the wrong treatment countless times
2-ALWAYS go to an NCI (National Cancer Institute) designated center. You find the BEST trials, protocols, experience. Countless lives are lost otherwise.
3-The FIRST step is THE most important. Some local doctor may give you a well-meaning treatment but totally disqualify you for trials
4-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.
As I told Dr. Robert Feldman, the most excellent surgeon who rooted around in my “inguinal mass” (That sounds so much better than “groinal lump.”), I’m not going to fight 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 and 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 you time, go to cancer.gov, 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 it. 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, “Can this be 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 CAT 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 the list. I decided it would be negative thinking to start one. But if it comes to that, the first item is cadging 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.
What makes it so jarring is that once you learn you have it, 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 have had no real ill effects and no other obvious problems, so I hadn’t been back. I know that’s stupid, but it’s also the way it is. You can change it in your 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 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 do because it sounds better 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.
I’m a contributing sports columnist for NBCSports.com and 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.
This is another problem with this thing. I’m not going 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.
That 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?
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 becomes more important than ever.
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.
