Bill Snead, 53, is a photographer for The Washington Post. In 1982, he was treated for an extremely rare cancer of the blood called hairy cell leukemia. For seven years, his cancer was in remission. But 18 months ago, it returned. Last fall, he decided to become part of a California research program to test a new experimental anti-cancer drug that has had promising early results. What follows are excerpts from the journal he kept.
Dying or the threat of dying is not novel to me. There were years when I didn't think I'd live to be 30, and figured there was little chance I would see 40. I've been a news photographer for 35 years, divorced for the last 15. My personal behavior and some of my professional assignments mirrored my skepticism about the the future.
I remember Vietnam and the first time the rockets started coming into Saigon as part of the Tet offensive.
I remember all the years I was drinking and all the times I prayed not to wake up in the morning.
I remember the vague symptoms of malaise and the fatigue that led to my first diagnosis of cancer nearly 10 years ago. That's when the doctors told me I had one year to live.
It turned out I had a different kind of cancer than the doctors first thought: hairy cell leukemia, a very rare cancer of the blood and bone marrow that is diagnosed in about 700 people annually. It's a slow, debilitating cancer that is inevitably fatal. The one treatment then was surgery, which is successful in about 50 percent of cases. In May 1982, doctors removed my 10-pound spleen -- not one of the body's essential organs -- and I became one of the lucky ones. My blood count returned to normal, and I went into remission for the next seven years.
I also went a little crazy and started drinking with a vengeance. My two grown children, Mark and Sally, live in the Washington area and watched me fall apart. In 1987, they took me to the Betty Ford Center in California, where I spent 28 days, in treatment for alcoholism. I stopped drinking, started going to meetings and haven't had a drink in nearly four years.
Now at age 53, my life seemed to have settled down. I was living in Adams-Morgan. Two years ago, I met my friend Laura DeArment, a widow from Peru, who lives a few blocks away. She's a chef for a catering company and has a 14-year old daughter. A year ago, we started seeing one other regularly. I was working hard again at my job, exercising three times a week, going to meetings.
There was just one problem: My cancer had returned.
About 18 months ago, my doctor discovered that my white blood cell count was rising. That meant the fatal hairy cells were back; they're called hairy because under the microscope, the normally round white blood cells look as though they're sprouting hair. Hairy-cell leukemia is a disease of the white blood cells, the key cells in the immune system that fight infections.
I wasn't prepared for this. I still felt okay, but I knew it was just a matter of time. My oncologist, Marjorie Voith, a handsome, warm woman, assured me I had time. Since my spleen had been removed, there were only two treatments to attack and, hopefully, kill my cancer: alpha interferon, a genetically engineered compound, and a powerful and toxic anti-cancer drug called pento- statin. Neither had really good track records, and both had grim side effects. But I was literally sick and tired of watching my white count go up and wanted to get this monkey off my back. I pushed for interferon, but Voith held me off. Why rush? she asked. Something new might come along.
In the winter, I went to Europe on assignment to photograph the new Germany and Eastern bloc countries after the dismantling of the Berlin Wall.
When I got home, Voith had good news. Something new had appeared. Researchers at the Scripps Clinic in La Jolla, Calif., announced a new drug that seemed to have a dramatic effect on hairy cell leukemia. It was a highly experimental drug -- only 12 patients had tried it so far. But the study was being expanded to test the drug on more patients. It sounded right for me. By this time, my white count was really shooting up: It was 55,000 -- that is the number of white cells per millileter of blood -- far above the normal count of between 4,500 and 10,000. My count had been going up about 1,500 every three months, but now the increase was accelerating ominously.
I flew to San Diego for an hour-long interview with Lawrence Piro, the oncologist and chief researcher who developed the drug. He looked over my records, my CT scans, X-rays and the results of numerous blood tests. On September 28, I got a letter telling me that I was being accepted into the program.
That meant spending two weeks at Scripps, located in the gorgeous beach community of La Jolla, as an outpatient. The cost of the treatment and extensive testing, excluding travel and living expenses, totaled about $8,000.
Laura was excited for me. She said she'd come to California to be with me. I reverted to my bad old macho habit of John Wayne-ing my way through a bad time as a loner and said to her: "If you want to come, fine -- but I don't want to take you away from your job and your family. Besides, I'll not be up to a lot of sightseeing." That was my way of saying I can do it all by myself. Thank God, Laura saw through me and understood that I needed her.
Before leaving for Scripps, Dr. Voith asked me if I was frightened. I understood what she meant. My new treatment, after all, would be an experiment. Sure, the first results had been good -- but would they hold up as more patients got treated? And what were the odds that the drug would work for me? "Consider the alternatives," I told my doctor. "What are my choices?"
By this time, my white count was up to 78,800 and 90 percent were hairy cells. Fatigue was beginning to be a real problem.
The night before I left for Scripps, I had dinner with my children. We were all a little tense. They put their arms around my shoulders. They remembered the last time I got on a plane to California to get treated at Betty Ford. "We know it's going to be all right," said my daughter. I liked her optimism.
On October 10, I checked into the Scripps Clinic to become the 96th patient with hairy cell leukemia to undergo this experimental treatment. I knew that the next two weeks would determine who won: me or the hairy cells.
Wednesday, October 10
I decide to treat myself to a vacation rental instead of sitting in a hotel room sucking my thumb. It's an affordable place -- $550 a week, two bedrooms and a hot tub, perched above Ocean Beach with a view of the Pacific Ocean, a 20-minute drive up the freeway to Scripps.
Many of the people entering the outpatient clinic are as pale as the building, a three-story stucco and steel hospital complex spread over three blocks.
At the hematology lab, I get a computer printout of my treatment program. The drug is 2-CdA, short for 2-Chlorodeoxyaden- osine, a reformulated compound that had already been used to treat some cancers.
The doctor, Alan Saven, is a Peter Lorre look-alike, a pleasant man of few words with a cat-that-ate-the-canary smile. He goes over my chart. My white blood cell count is analogous to a glass of beer. The good cells are the beer and the hairy cells are the foam. My white blood cells are mostly foam. Saven explains that the experimental drug attacks the hairy cells and will likely destroy all my white blood cells in the process. That will leave me without an immune system, and I'll be at high risk of getting infections. If all goes well, a few weeks after treatment the bone marrow will start producing normal white blood cells and my immune system will be replenished.
Here's the experience so far of the first 12 patients in the program: 11 are still in remission. They have normal bone marrow and blood counts. The treatment has no effect on heart, lungs or kidneys. During the therapy, there may be some gout-like pain in the joints. And a 50-50 percent chance of being hospitalized with high fever. No deaths have been linked to the drug.
"So you came all the way from D.C.," Saven says, reading my chart again. "I'd come this far too if I had blood counts like yours."
He's ready to begin treatment right away. First I get my heart checked out. As the technician sets me up for the electrocardiogram, she jokingly asks: "What's your disease of choice?"
"Hairy cell leukemia," I reply.
"Aren't you lucky!" she responds.
I guess I hadn't thought of it that way. Everybody here is excited about Dr. Piro's results. It takes away some of my pre-game jitters.
Next I get a long catheter in my arm. That's the job of Debbie Allen, the IV nurse. She leads me to a bed and asks if I want to watch television, to take my mind off what's about to happen. I watch the final innings of the American League playoffs as she finds a vein she likes and starts threading the 23-inch long blue tube up the vein. Its target is the superior vena cava, one of two large veins to the heart. I feel a few twinges but no pain.
Once I'm wired, it takes three minutes to attach the pump filled with the drug to the catheter in my arm.
It's hard to believe this is life-or-death treatment, it's so simple. I wear a pump the size of a Walkman that is going to drip 2-CdA into my blood for seven days. I'm to come here every day to be monitored. Otherwise I'm told to just hang out, drink lots of water and hope the side effects aren't too bad.
The outpatient lobby is empty when I leave after eight hours, with my newly designed left arm, the pump in one hand and a paper bag full of containers for urine samples in the other. Not exactly GQ material. I get in the rental car and place the pump beside me. The number 99 blips on the pump's screen. The countdown on the drug dose begins. The goal is zero.
Thursday, October 11
Sleeping with the pump is like sleeping with a Polaroid. When it pumps every few minutes, it makes a sound like the camera pushing out the print. I don't sleep very well. I'm afraid I'll roll over and turn off the pump.
I walk on the beach but keep my shoes on to avoid stepping on a shell or rusty nail. A little cut could put me in the hospital. I eat early and alone in the beach house to avoid the crowds and any unnecessary germs.
Friday, October 12
I finish my 24-hour urine sample and carry it carefully through the clinic lobby. Then I get into the "blood line" -- a long row of chairs outside the hematology lab where patients wait to have their blood work done. From my right arm, the technicians take one to three test tubes of blood each day to monitor the effects of the drug. The talk is usually about who's taking blood that day. A little, gray-haired lady walks by and pats me on the knee. "Don't worry, this guy's good today," she says.
Saven asks me how I feel (good) and if I'm having any problems (no). My white count has dropped from 78,000 to 72,000.
"You won't see any dramatic change until the end of the weekend," he says. "Remember, if you get a temperature of 101, call this number."
"Can I take vitamins?" I ask.
"No, they might interact with the drug," he warns.
The man who developed the drug, Dr. Piro, stops by. I tell him about the beach house. "You can pretend you're on vacation," he says.
I tell him Laura is arriving tonight.
"If she has a cold, wear a mask," he says. He smiles; I don't.
Saturday, October 13
Laura comes with me to Scripps. I tell her this is where I would go if I run a high fever. I ask the nurse what the treatment would be? "We hook you up to an IV and fill you full of liquids," she explains. I promise to keep drinking a lot of water to keep the chemicals moving through my body, preventing a fever.
Laura and I stop in a health food store on the way home. I figure I need all the help I can get. We buy brown rice, cereal, low-fat yogurt and lots of bottled water. I'm a sight with my left arm covered in mesh and the pump hooked to my belt. People stare at my arm and let us go to the head of the checkout line.
Sunday, October 14
I wake up feeling warm. My temperature is 99. Laura and I have a quiet day. I nap from 4:30 to 9 p.m., wake up, eat a little and go back to bed. I dream about covering an event at the French Embassy and being pelted by tomatoes.
Monday, October 15
Aching joints today. Bathing is a chore with the pump outside the tub and one arm sheathed in plastic.
I'm drinking at least a gallon of water a day. The number on my pump reads 15. Just about all the drug has been dripped into my veins.
Tuesday, October 16
This morning sitting in the blood line, I talk with another patient from Los Angeles. He was diagnosed three and a half years ago with hairy cell leukemia and started taking interferon the next day. For six months, he gave himself a shot of interferon every morning -- at a cost of about $4,000 per month -- and his blood count did not change. He was also depressed and had difficulty concentrating.
I tell him I feel a little queasy this morning and have a slight fever.
"How would you like to feel like that on your best mornings?" he asks. "I could not be having this conversation with you if I was on interferon."
There but for the grace of Dr. Voith, I thought, remembering how I almost insisted that I take interferon.
Wednesday, October 17
Today the catheter comes out. My left arm has been itching for a couple of days. (It turns out I'm allergic to the tape.) The vein in my right arm where they've poked day after day to take blood is black and blue and swollen. There's a lot of talk, sitting in the blood line, about fevers. My friend from Los Angeles says he had a miserable night -- sweats, spiking fevers. He called the hospital and was told to take Tylenol and wait and see. I remember that, just in case.
The nurse ushers me into an examining room and hands me an electronic thermometer. "Boy, the patients are restless -- wonder what position the moon was in last night?" she asks.
My temperature is up slightly. But that's not what I'm worried about. The key is my white blood count. How much has it come down from its peak of 78,800? I hope for a count of 20,000 or less.
Saven comes in, his head bowed, reading my printout.
"White count is 12,400," he says.
I'm stunned. I can't believe it's so good. He hands me the printout. "That white count is wonderful," I say.
"It's wonderful and the drug's wonderful," Saven deadpans. "Are you impressed?"
He smiles and continues: "The drug is really kicking in . . . Your count could go to zero. You'll have no immune system."
I know that means I'm in danger of getting an infection that could kill me.
"If you have a temperature over 101, call the hospital or me," he continues. "No crowds and don't go farther than an hour from Scripps -- you could regret it. Any pains or problems you wish to tell me about?"
I think of all the little aches and slight fevers, the restless sleep and nausea. And then I think: It's worked, the 2-CdA has worked!
"Nothing worth reporting after hearing that white blood count," I say.
Saven gets up, shakes my hand and heads for another examination room.
I sit there alone and feel like crying. Maybe someday I'll learn how to do that. I hope so. I return slowly to the huge waiting area where Laura is waiting. I hand her a printout with my blood count. She bursts into tears for both of us.
Around midnight, my ears start burning. It must be a fever. The thermometer reads 102. I take two Tylenol tablets. Laura thinks we should go to the hospital. But I'm so tired, drinking water seems like a better idea.
Finally I begin to sweat . . . profusely. I soak through the sheets, the blankets, the matress pad. I get wracking chills. Then it all stops, and I fall into a deep sleep. I dream I am in Brussels on a food assignment and get lost.
Friday, October 19
I'm so tired I can hardly make it up the stairs at the clinic.
"Your white count is 1,800," Dr. Saven says. "That's great," I say.
"How's your appetite?" he asks. "Not great."
"You're running a slight fever?" he asks. I tell him about last night.
"You bent the rules," he says, adding "I probably would have done the same thing."
All I can think about is that the drug is working. The sun is shining. Laura and I celebrate with a frozen yogurt. But I know that I'm not out of the woods. With my immune system obliterated, I'm a moving target for every virus in California. I don't know if my fevers are caused by the drug or by an infection.
I have chills again, so I pull on a sweatsuit and get under two comforters. I still can't stop shivering. After an hour, I start warming up; hot flashes in my ears. My temperature is 101 and I feel weak. I joke to Laura that the car ride to Scripps would probably kill me now. She doesn't laugh. My temperature goes to 102. I've been drinking so much water, I slosh when I walk around the house. Temperature 103. Then the fever breaks. I start to sweat. I have a craving for chocolate chip cookies. I eat two and lapse into an exhausted sleep. When I wake up eight hours later, my temperature is a blessedly normal 98.6.
Saturday, October 20
I sleep until noon. No aching joints; my back pain is gone and I'm starving.
Hot flashes off and on in the ears.
Sunday, October 21
Laura is preparing to return to Washington. Eight years ago, the first time I had cancer, I John Wayne-d it through and said I didn't need anybody. This time, I think, 'I couldn't have made it without Laura.' I tell her before she leaves.
Monday, October 22
Saven flashes his best Peter Lorre smile. He doesn't want to hear the details of Friday night. I've already broken the rules. Besides, everything now depends on my white blood cell count.
Good news. My white count has bottomed out and started to go back up: it's 1,300. This means the drug has killed all the cells it's going to and now my bone marrow is producing new cells, the kind that fight infection.
Tuesday, October 23
I get up late and walk on the beach. I'm physically and mentally shot.
Wednesday, October 24
I go to Scripps for the last time. My final white count is 3,700.
"Considering what your counts were when you came in here, they could not be any better," says Dr. Saven. I couldn't agree more.
Thursday, October 25
The 7:45 a.m. flight to Washington is packed. I don't feel great. At least I'm on an aisle and there's an airsickness bag in the seat back in front of me. I grab another from the center seat, just in case. I make the trip home without using them.
The last six weeks have been uneventful.
I'm back at work, still slightly anemic. I've started exercising again. I see Dr. Voith weekly to get my blood counts checked. The results are mailed to Scripps. In three months, I'll have a bone marrow biopsy. That will be a key measure of whether the treatment has worked.
I think of the last photo assignment I had before going to Scripps -- a boxing match at the D.C. Boys and Girls Club in Anacostia. As I left around 10 p.m., I walked past the police and ambulance crew hovering over the body of a drug overdose victim in a dimly lit parking lot. Another reminder of how quickly fate can change, of how little control we have over destiny.
Last week, Dr. Voith gave me more good news. My white count is up to 4,300, and none of the white cells are hairy. I'm just about normal.
It will be a year before I become a definitive statistic in the Scripps study, but I'm home at last -- Patient Number 96 -- my body full of chemicals infused by strangers 3,000 miles away in an experimental program that was only made public last April. It has given me another chance.
I pray that it will prolong my life even more. Maybe. Maybe not.