A Singer-Songwriter Fights His 14-Year Battle Against Leukemia with Chemotherapy and Humor
10/03/1983 at 01:00 AM EDT
Folk-rocker and songwriter Steve Goodman's hallmark has always been his humor. The Chicago-born son of an auto salesman father and housewife mother, Goodman is the creator of such sardonic tunes as Chicken Cordon Bleus, in which he takes pot shots at health food faddists, and A Dying Cub Fan's Last Request, an ode to his beloved but beleaguered hometown baseball team. Though commercial recording success has eluded him (Goodman's biggest hit was City of New Orleans, which scaled the charts only after being recorded by Arlo Guthrie in 1972), his live shows have been consistent sellouts, and over the years the 35-year-old performer has earned a reputation as a funny, astute observer of the contemporary world.
Lately Goodman's world has revolved in great part around hospitals. Diagnosed in 1969 as having leukemia, he had a 13½-year remission before suffering a relapse last summer. As a result, he quips, his concerts are now "booked around chemotherapy and the baseball season." The treatment resulted in temporary baldness for Goodman, which inspired the title of his latest album, Artistic Hair. Recorded on his own label, Red Pajamas Records, the LP is distributed from the Seal Beach, Calif. home Goodman shares with his wife, Nancy, and their three daughters. "Send me $7 and I'll send you a record that doesn't tell you a thing about leukemia," he cracks. In a recent talk with PEOPLE'S Susan Champlin, however, he discussed, with characteristic wit and candor, his life as a victim of the disease.
The leukemia was first diagnosed when I was 20 years old. I was a part-time student, had worked for a year as a postal clerk and was singing a couple of nights a week at this bar in Chicago. My father had had a coronary event of some kind, and I went to visit him in the hospital. I happened to run into some cousins there, and they told me I looked even worse than my father. I'd been feeling tired, so I went to my dad's doctor, who spotted it right away. It snuck up on me. I thought it was mononucleosis or something like that. I knew I wasn't hitting on all six.
What I have is acute lymphoblastic leukemia. Usually people much younger than me get it, so it was a real surprise. It's a disease of the bone marrow, of the cells that produce blood. It affects mostly the production of the white cells, then the platelets, then the red cells, in that order. Anemia and all the things attending anemia are symptoms: bruising, weakened immune system, lethargy, joint aches. I had all those symptoms.
I was referred to Memorial Sloan-Kettering Cancer Center in New York which, at the time, was one of the few places where they had an experimental drug program to treat this disease. Pretty much from the beginning, everybody was very straight with me. I asked for any and all information that could be made available. A fellow in the oncology program told me that it really didn't matter how much I read about it, that by the end of the first course of treatment, I'd know as much as any layman could know and maybe even more—because of my firsthand experience.
I was very fortunate. The doctors figured out what to do in my case. There aren't a lot of graduates from the class of January 1969 with this stuff. I was put on chemotherapy immediately. It was fairly easy to get me into remission. They did it in two months with several drugs—including L-asparaginase, vincristine and prednisone—in an attempt to kill all the cancer cells in the bone marrow. But they can get anybody into remission. The trick is keeping you there. Remission means no discernible sign of the disease. It doesn't mean it's gone. They know it comes back unless you set up an incredible defense. So I had five and a half years of outpatient chemotherapy to keep the cancer in remission. It was a seven-drug protocol, a rotation of three different kinds of pills plus four injectables.
All these drugs have side effects which in some ways are really as mean as the disease. Some cause hair loss and vomiting, but the hair grows back and you do stop vomiting. You just have to follow the rules. If they tell you to drink extra water this week to keep things moving, then you do. If they tell you to take the pills with Maalox, then you do. There were times when I thought, "This can't be good for me," but there were never times when I didn't think it was worth trying. The drugs weren't pleasant, but the alternatives are unthinkable to me.
I went through the "why me?" stage, but then I got to "why not me?" I'm sure my folks felt an incredible amount of pain. My mom was very brave. So was my dad; he's gone now. And my brother, David, was great. Nobody turned into a vegetable and had to be helped from the room. They were always right there in my corner.
I was dealing with all this when I met Nancy in September of '69 in a bar where I was singing. She was a waitress. We got married in February of '70. If my situation ever frightened her, she never expressed it to me. I don't have the slightest idea what I would have done without her.
The people at the hospital encouraged me to do as much as I felt I could. I was forever testing the limits of what I could do physically. I went out, made records, drank brandy and toured the country, mostly just to see if I could.
I had chemotherapy treatments until the end of 1974. I'd fly from Chicago or wherever I was on the road to New York to do it. How often depended on the side effects and how long they took to wear off. It varied from every 10 days to once a month, depending on the drugs and how much of them I had to take. Every Thursday I would get a blood count. I'd walk into the emergency room of some hospital wherever I was and say, "I'm a leukemia patient from Memorial Hospital in New York, and I need a count so I can call my doctor and find out how many pills to take." Jaws just dropped, because it wasn't common for oncology patients to be walking around and traveling. It's more common now. After the five and a half years of chemo I had an incredible seven-and-a-half-year vacation. To be honest, coming off the drugs was mentally as difficult as starting on them. As much as I disliked the side effects, I'd grown psychologically dependent on the idea that these things were working. I was still here after six years, which was something of a miracle. I realized they were toxic. Some have specific limits on the amount you're allowed to take during your lifetime.
I began feeling crummy again in the winter of '81-'82, but I never thought I was relapsing. By that time I thought I was out of the woods and looked for all kinds of other things, like back problems or kidney problems. I felt fatigued, lost the feeling in the bottom of my right foot and put on weight. By the time I got to the hospital, I was pretty sick. You couldn't tell by my blood count what was going on because my bone marrow was still in remission. But a spinal tap revealed that I had the central nervous system version of the same disease which meant I had cancer cells in my spine. I also got meningitis. I almost bought the farm then.
I have a couple of bionic parts to help me get the medicine this time. There's the Ommaya reservoir, a bulb—it looks like a turkey baster—located at the top of my head which they shoot the medicine into. I have a broviac catheter, a tube in my chest that's attached to a vein. After years of chemotherapy, my veins were basically wrecked. I began a course of intrathecal or spinal chemotherapy, which means I receive the medicine by spinal taps and through my Ommaya reservoir, as well as whole brain radiation. On top of that I get systemic chemotherapy, which is oral or through the broviac catheter or both to prevent any recurrence of the disease in my bone marrow. None of these procedures is that time-consuming. They really only hurt while they're happening. The current plan is to cut off treatment by Christmas, though they may continue the intrathecal therapy for another couple of years. They'll never really know if they got it. They don't throw the word "cure" around much.
I really don't think the leukemia has affected the kinds of stuff I do as a musician. It's sharpened my sense of humor. If you can't laugh at it, then it becomes bigger than you and you're in trouble. You get a pretty good read on what's important and what isn't when faced with a real dilemma like this. The day-to-day vagaries of show business—like "Why isn't my record selling?"—don't seem important enough to get you down. I've been lucky to be hooked up with my manager, Al Bunetta. He managed to save enough dates between chemo sessions so that we were able to eat. Any success I've had businesswise, I owe to him.
My kids understand the situation. They've been unbelievably brave, asking all the right questions and never reacting negatively. I get a lot of strength from them. And their mom's been amazing. She has great strength. She handled it like it was some pop fly.
I never intended to trade on this. I'm talking about it now to help others with the same problem. A lot of people—I think it's something like one in four in this country—will have some experience with an oncological situation. What's important is to stay on top of the game. I've had less depressing things happen to me, but I never once thought I was alone. There are too many people on my side. I couldn't fail. We overwhelmed it with numbers. We haven't won yet. The game is still on. But it's great to be in the game.