Meg stopped pacing and talking into her headset.
The interns were no longer holding cue cards.
The audience sat mesmerized.
And my stomach relaxed, my peanuts and Diet Coke intact. The Oprah adrenaline was in full force, and for a few moments I forgot about RA. Talking to Oprah really was like talking to my best friend, and, in this case, it was like talking to a friend who knew I was in trouble and was there to bail me out.
When a TV show taping is over, it is over. The audience is quickly moved out. The bright lights dimmed. The host magically disappears, and the guests are promptly led back to their dressing rooms to pack up and move out. Cars wait outside to take them to their next destination. But this time, they couldn’t end it fast enough, because they were already working on the next show. This show was in the can, and everyone involved was done with it. When you were new in television it could be shattering. A quick “good job” if you’re lucky but most of the time just a hasty “thanks.” It was very anticlimactic after the adrenaline rush of the show. I asked if I could thank Oprah, and my producer Meg looked at me as if I was asking her to personally drive me back to New York. “Oprah is already out of the building,” she informed me, as she waited impatiently for me to gather my things. “Becca, please get Christine to her car,” Meg grabbed a young intern who walked by. “I have to get back to work,” she said leaving the room.
“I should say good-bye to the other experts,” I said to the pacing intern. “I really never got to talk to them.” “Oh, they left,” she answered. Of course, everyone had left.
Back in the car riding to O’Hare I realized I had not spoken to Amy all day. It was now six o’clock. Not sure if this was a good sign or a bad one, I dialed her number.
“How’s it going?” I shouted into the phone, hearing the background noise of blow dryers in the New York salon.
“Going good, how was Oprah?” she shouted back.
“A long story that I will share with you later. Did they get the auburn color for her hair?”
“Yes, it looks good. I checked it under the spotlights in the salon to make sure it’s not too red. They’re blow-drying her right now,” Amy said in a relaxed tone that confirmed everything was fine. “You have a safe flight and relax. This has been a crazy day for you. I’ll see you in the morning.”
“Thanks Amy, you’ve been great. See you tomorrow.”
I had pushed my RA to the back of my mind during Oprah in order to get the job done. Between the adrenaline rush of live television and my controlling need for professionalism, I was able to do this. But now, back at the hotel, relief and fatigue took over.
I wanted to call Shelly and tell him about the show. I tried to reach for the phone on the nightstand, but my hands and arms were too weak to even support the handset, making me get up and lift the phone onto the bed. It was all I could do to hold the receiver to my ear.
“Hi, gorgeous, I’ve been waiting to hear from you. How was your flight to Chicago?” Shelly asked.
“You would have loved to be in my seat. Some athlete was sitting next to me. He had a big Superbowl ring and was so tall he could hardly get his legs behind the seat in front. The flight attendant called him Mr. Frazer.”
“Frazer? It had to be Walt Frazer from the New York Knicks. That was an NBA championship ring! He’s an All-Star. I would have loved to have been on your flight.”
“And Oprah, wait till you hear about the show . . .” I interjected, reaching for a pain pill to dull the stress that the day had taken on my joints. The adrenaline was gone, the reality back in full force.
“Walt Frazer was one of my favorite players when I lived in New York. Did you tell him I’m a Knicks fan?”
We continued talking about Walt and the Knicks. Shelly dealt with major problems all day long. His escape was talking sports, and after the day I had it was fine with me.
“Oh, how was your Oprah segment?” he finally asked.
“Great, just great.”
14
Rejected for the Rat Cage
NOVEMBER 1996
After a frustrating summer experimenting with various combinations of the same drugs, my RA was no better. We were in Laguna, where we had a getaway town house. What better place to spend Thanksgiving we thought, making our holiday plans. We didn’t factor in spending part of it in the emergency room at the Laguna Beach Hospital after a call from Dr. Kalunian.
“Sorry to call on a holiday, but I got your labs back and your liver functions are elevated again, this time even higher. You need to get to a lab and take them again.”
“But it’s a holiday,” I said, trying to figure out how I would juggle my houseguests and my lab work.
“Go to the emergency room, and have them fax the results over to me. This is important. You need to get right on it,” Dr. Kalunian insisted. Dr. Kalunian was not an alarmist, but he was very conservative when it came to health. It seemed as if I was always redoing lab work.
Shelly and I drove to the emergency room, leaving family and out-of-town guests at home thinking we had a business emergency. Thank God everyone was busy catching up and didn’t ask what kind of emergency. At the hospital, the ER was packed with crying babies and sick-looking people. One young boy sat waiting to be seen with blood dripping through a makeshift bandage on his arm.
Five hours later we left, with corrected and more positive lab results in hand. Now if only the turkey in the oven was doing as well.
A week later I was on my way to UCLA. I had a ten o’clock appointment at the research center. I had waited for this appointment for months. It felt like the only hope I had left. Today I would find out what it was like to be a medical lab rat.
“Christine, we have to keep you going until this new group of TNF drugs becomes available. They look promising,” Dr. Kalunian told me over and over when I lost hope, which over the past few years was often. He even set up the appointment at the London hospital, when in desperation Shelly and I visited in hopes of getting into their research program. In a thick British accent the doctor informed me in no uncertain terms that I was ineligible for a London trial when I was a U.S. citizen. He thought I was coming for another opinion. Dr. Wallace had said beg, borrow, or steal to get the new drugs, but in this foreign environment, with a doctor who looked at me like “why did you make this trip?” I knew that all options were off the table. I would have to wait until testing happened in the United States.
Finally, back at UCLA, the testing was under way and I was desperate to be a part of it. UCLA had the new TNF-blocking drug, Enbrel, that I had unsuccessfully tried to get first from the manufacturer and then from the research program in London. TNF stands for Tumor Necrosis Factor, a normal protein that plays a role in the immune system. Patients with rheumatoid arthritis usually have too much TNF, which causes inflammation, and that can compromise the immune systems. Enbrel was one of the first drugs being tested that offered the hope of reducing TNF levels.
Dr. Kalunian had set up the meeting. The research center was a few streets off the main campus of UCLA. Driving up to the address I saw an old building squeezed in between a fire station and the veterans’ cemetery. Once inside I realized the outside looked new compared to the sterile, crumbling interior. The waiting room had furniture that had to be from the sixties and tattered medical brochures that had been read too many times. I didn’t care. Enbrel might be the new miracle drug. I was in dire need of a miracle.
“Christine Schwab?” the assistant called as she walked into the reception room where I was the only patient.
“Good morning,” I answered with all the positive energy I felt.
“Fill out these papers and Dr. Bulpitt will be with you shortly,” said the nurse as she handed me a thick stack of questions about my health.
How long does it take me to get dressed in the morning? On a good day, no time at all. On a bad day, way too long.
Did I need help? My pride would never let me ask for help. I was not old.
/> Could I open jars by myself? No, Shelly knew to open my jars so I never had to ask.
Where on a scale of one to one hundred would I rate my daily pain? It was all over the place. I guess I would rate my average day of pain around eighty five.
On that same scale where was I emotionally? Much lower than I would ever let on.
Did I believe I could be helped with medications? Yes, with THIS new medicine. I had given up hope on all the others.
I took my list of medications out of my purse and began, prepared for what would be one of the most important days of my life. Azulfidine, methotrexate, oral gold, imuran, Plaquenil, Cytoxan, cyclosporine, penicillamine, steroids, and Azulfidine again. Seven years of toxic drugs that either didn’t work or worked but with complications too severe for me to continue taking them.
The assistant escorted me to an examining room, even more dismal than the waiting room. The only place for me to sit was on a cold, steel exam table. Everything in the room was white, beige, or green, but over the years it had all turned gray, even the pillowcase on the worn, flat pillow for my head.
In walked Dr. Bulpitt, a tall, imposing man in his mid-thirties. Between the two of us, we took up almost every inch of space in the room. He carried my thick, six-year UCLA medical chart, and the questionnaires I had just filled out. We sat facing each other, me on the bed with my legs hanging over the side, he on the small rolling stool in front of me. I went into my full-blown sales mode about how glad I was to be here. How I went to London to try to get TNF only to be rejected because I was a U.S. citizen. I chatted nonstop about my up-and-down journey with RA. This man had medicine that I needed. This man would determine if I was accepted in the program.
He sat there listening, no readable expression on his face. The more he listened, the more I talked, in rapid, anxious sentences. I knew how to sell, and today I was selling my body for research, willingly.
Who knew the risks? I was beyond caring. I had lost the quality of my life. The fear of my disease being revealed had shaken my professional confidence. Something on Dr. Bulpitt’s face told me he wasn’t hearing me. His acknowledging nods of the head were polite but not absorbed. I stopped the sales pitch.
“Christine, I’m sorry you had to come here today. Had I read your chart earlier I would have called you and canceled. You’re not a candidate for this research program. You’ve been treated unsuccessfully on too many drugs. We need patients who have only been on a few drugs, because we need positive results.”
My brain heard what he said but my heart couldn’t believe it.
“But I’m a compliant patient. I have a great attitude. I know I’ll do well in the program. I’ve been waiting for years . . .”
In a quiet, nonemotional voice Dr. Bulpitt continued. “I’m sure you are, but we only have so many openings, and you’re too risky. You have failed on too many drugs. If you fail on this drug it lowers the chance of the FDA approving it. FDA approval would allow it to help millions. The animal research so far has been very positive. We can’t risk you lowering the odds.”
“But that’s exactly why I need this.” By now I was pleading. “I have to get in this program. Dr. Kalunian has told me about TNF for years. I’ve waited for years. I tried to get it from the manufacturer. I even went to London to try to get into a human research program. Please . . .”
Dr. Bulpitt never changed his expressionless face. To him I was one of the experimental rats in the cages, one that didn’t make the cut.
“I’m sorry. Like I said, I wish I’d looked at your chart earlier. I could have saved you the trip.”
I felt the tears well up. I saw on his face that it didn’t matter what I said or how I begged. He was a research doctor; it was all about numbers and stats. He didn’t see me as a person, a desperate person. He saw me as a patient who most likely wouldn’t do well in his new test. I was tainted with dozens of combinations of drugs that UCLA doctors had given me over the past seven years. Drugs that had played havoc with my life and failed, and now that failure would prevent me from a drug that could potentially help. Where was the fairness in this? My built-up hopes and frustrations burst out in tears as I grabbed my purse and ran out the door, down the hallways, and out to the parking lot. I sat in my car for twenty minutes, trying to stop crying and to figure out how it all went so wrong. I felt hopeless.
Dr. Kalunian’s answer machine picked up after the first ring, indicating that he was on another line. I waited for the beep, “Dr. Kalunian, Christine Schwab, I just left Dr. Bulpitt’s office, and he said I’m not a candidate for the research program because I have failed with too many drugs,” my voice cracked as I choked out the painful words.
My phone rang before I could even start my car: “Christine, Ken Kalunian. I’m so sorry. Just hold on, let me see what I can do. I’ll get back to you.”
I couldn’t gather any hope or enthusiasm. How could I tell Shelly? His expectations were as high as mine. Together we waited for this day, this opportunity. What did I do now? I left all my hope in that dismal research building. A wave of depression froze me behind the wheel of my car. I couldn’t even turn the key in my ignition. I didn’t know where to go and so I sat in the parking lot as people drove in and out. People filled with hopes and fears, looking for answers. Patients involved in the many research programs going on in the building, offering hope that I had been denied.
I cried myself into a stupor, then into sleep. Just like my childhood, enough tears, and I could put myself to sleep where the pain wasn’t as intense, if only for a short time. My phone woke me up.
“Sweetie, I thought you were going to call me after your appointment. How did it go?” Shelly asked. Looking at the clock on my dashboard I realized I had been sleeping in my car for almost an hour.
“I’m not a candidate for the program. I’ve been on too many drugs and failed. They want people who will get good results,” I answered, all the emotion drained from my voice and dried up like the streaked tears on my face.
“Oh, Christine,” was all Shelly could say. He held as much hope as I did. He went to London with me to try to get TNF. He helped me write my pleading letter to the manufacturer trying to get into the early research. “Where are you?”
“I’m in the parking lot.”
“At UCLA?” he asked.
“Yes, at the Veteran building.”
“Let’s meet at the Hamlet Gardens and have lunch and talk this through. I can be there in thirty minutes,” he said with forced optimism.
“No, I’m not hungry, I think I’ll go home. You don’t have to come all the way over the hill from the valley, we’ll talk tonight,” I said, trying to sound positive.
“You have to eat. I’ll see you at Hamlet Gardens. Get a table and order some wine. Christine, I love you, we’ll be okay.”
I wasn’t so sure. Chronic pain wears on a person. I could see it in my face even if others couldn’t. My skills with makeup helped cover the signs of pain. A sparkling eye shadow will draw attention away—I had taught that to all my viewers—now I used it for myself. Almost seven years of chronic pain. Almost seven years of hopes and dreams dashed with failed drugs. Complications of thinning hair, hearing loss, and a constant sensitive stomach were reminders. The biggest reminder of all was the daily pain of moving from place to place. My feet, knees, shoulders, elbows, wrists, and hand joints were now inflamed, ravaged by RA. The hope of the research program had kept me going. Hope kept my fantasy world alive enough to move me forward. And now that hope was gone.
Hamlet Gardens, right around the corner from UCLA, was one of our favorites. Fresh guacamole made right at your table. We had celebrated many events there, enjoyed many pre–Geffen Playhouse dinners. I could leave my car in this lot and walk, it was that close. Shelly had to drive all the way from his office at Universal Studios in Studio City. In a trance I got out of my car, locked the door, and slowly walked toward the restaurant.
How would we be okay? Shelly never lost hope as each year of liv
ing with RA took its toll on my body and my mind. He was the one who kept me going, moving forward, searching for answers. How could we be okay when I had lost all hope? When the only answers now were different combinations of drugs that have already failed me or desperate, questionable, unorthodox treatments like draining and cleaning my blood or healers who ran their hands over my body making vibrations that had no logical origin. My reflection in the passing store windows was of a tired, worn-down, defeated woman. What happened to the vibrant, healthy, energetic television reporter? What happened to the healthy, toned, and exciting woman my husband married?
15
Just Do It . . .
JANUARY 1997
I swallowed the pain pill with a glass of water as I sat in the plush chairs of the American Airlines Admirals Club, watching the beehive of activity as businesspeople worked on computers and cell phones arranging their work schedules while we all waited to board our planes. Shelly and I were headed to New York for a hectic week of work. I wondered how I would get through it. My new regime of medications was yet another combination of old drugs, the hope being that the new combination would make the old ineffective drugs work. Sort of like rearranging old furniture in the same room in the hopes that it will look new. Dr. Kalunian tried to keep me encouraged that it was just a matter of finding the right combination for me. I was still feeling the rejection of being too tainted by failed drugs to be a candidate for the research program. I tried to figure out how I could maneuver through the New York week, both with my attitude and my pain, and for once I couldn’t come up with any new answers to my old problems.
As Shelly read the paper I sipped lukewarm coffee and ate a miniature bagel to coat my stomach for the pain pill.
Take Me Home From the Oscars: Arthritis, Television, Fashion, and Me Page 14
