“Yes,” I answered, quickly trying to swallow a Dorito.
“Your Enbrel kit is ready for pickup.”
It’s a good thing I wasn’t in the room with her; I would have jumped up and hugged her with my robo arms, probably knocking her out cold.
My Enbrel kit, full strength, was ready and waiting. I couldn’t get dressed fast enough. Hope, once again, filled my aching joints.
I entered the windowless room No.202 at the UCLA research center, the one room dedicated to patient labs and treatments for those enrolled in research projects. Today I looked at the room differently. Today it was a room of hope, for sure, real hope. For the first time I really noticed the worn Barcalounger chairs, paper towels covering their tattered arms. Metal trays with needles, alcohol, Band-Aids, and cotton balls were ready and waiting. Four white refrigerators were placed around the square room. Each one had sign-up sheets on clipboards hanging on the front and a padlock on the door handle, tightly secured to protect the valuable experimental medicines used in the various programs. The counter held centrifuges, where vials of blood were turning upside down, around and around, to separate and test for levels of disease. Patients of all ages, races, sizes, and genders sat in the various six chairs, some with IVs dripping into their arms. Others filled out questionnaires about their well-being, their pain, their progress or regression. A few with their heads leaned back, eyes closed, waited for the unproven medications to settle in their bodies before they were allowed to leave.
I was now a regular, like Norm on Cheers. I knew the routine. I had practiced my first injections here, my hands shaking as I squeamishly tried to put the needle through the skin of my upper thigh. The sight of blood, needles, and centrifuges no longer intimidated me.
Tina, the technician, took a blue nylon insulated box with handles out of the locked refrigerator and handed it to me. An expensive Hermès alligator bag couldn’t have looked as good as this little blue one.
“Here’s your kit, same as during the double-blind test. You mark the diary with the date and time of each injection. Note anything that is different or unusual to you. Save the used needles in this red plastic box and return them on your next visit. Keep the medicine refrigerated. If you travel, pack it in ice. If it’s not kept cold it will affect the treatment.” Tina’s demeanor never changed. She had seen the highs and lows of medical testing too many times to let emotion come into the equation. Today her somber facade couldn’t diminish my expectations. I walked out carrying my latest and hopefully greatest accessory.
Over the course of my years at UCLA I had left the medical center in many moods. Total depression, total euphoria. In pain and in relief. Accepted and rejected. Today, I left feeling positive. In my new blue plastic bag I held the hope of more control over my health. I no longer thought about the what-ifs; would it work, would I have complications, would I be allergic? I had traveled that road of ups and downs of chronic illness. I had been swollen with steroids, green with nausea, watched my hair fall out from Cytoxan, lived with constant ringing in my ears because of penicillamine and almost died in the hospital from metho-trexate. I had hobbled instead of walked, lived with my joints stiffening after any prolonged sitting position, and watched my hands age almost overnight. I had given up hope, but only for short periods. I had to believe I would get better, but it was becoming more difficult. On some days I had even turned my Believe rock over, all hope gone. For more than seven years I had vacillated back and forth between hope and despair, and lately despair held the lead. Uncertainty. My life was uncertain. Even with my desperate grasping for control, control was always outside my reach. Shelly never gave up hope, at least not openly to me. Dr. Kalunian never gave up hope. I wished I could have said the same.
“You’re doing amazing. Really, look at you. You’re beautiful, nobody would know anything was wrong,” Shelly would say every time I dressed for an event. “Beautiful.” That’s when I knew my denial worked. I could even fool Shelly. But more and more I saw people looking at my hands, watching me slowly rise from a table. Even with my clothes adjustments, my movements were wobbly and deliberate. The fear that my cover-up wasn’t working haunted me. How long could I hold onto my career? Who would I be without it?
I felt safer in my marriage. Slanted hands, swollen joints, Shelly didn’t seem to care. He had passed the ultimate test. He was staying. If only I could see myself as he did. And I tried. Really, every day I tried to see myself through his eyes but my mom’s critical vision always crept in.
“Chrissie, who did your hair for TV this morning?” she would ask me on my routine phone call to her after a national segment. “Did you pick out that dress?” She didn’t have to go into details, she could trigger my insecurities with just one question in that special tone in her voice. “I did my hair mom, and that’s my favorite new dress,” I answered, trying to stand up to her. I sounded strong through the phone but inside my fears of not being good enough, not looking good enough roared, fighting for space inside my RA-riddled body. I wanted to believe Shelly’s words, but my mom still had the upper hand.
But now, leaving the UCLA building that had been the focus of my life for more than seven years, I was living two lives. The life of a chronically ill research patient, praying for hope, and the other the life I dreamed of, the career and marriage the movies and books had always promised. I never took my good life for granted. I knew it could go away in a minute, just like my mom always went away in my childhood, regardless of my begging and pleading. But I also knew that the disease could go away at any moment. I could go into remission. I could be normal.
With each step I convinced myself that Enbrel was going to work. Today I thought only about the possibilities. In my strong moments, I always believed anything was possible in life, or at least almost anything. Today I felt these possibilities even in my eroded bones and worn joints and in my slightly broken heart from the expectations and disappointments of too many treatments. I felt it in my soul. It was possible because I had believed it could be possible in the research program. It was possible because I rose above and past my childhood. I survived the insecurities of living with people who didn’t care about me. I survived the insecurities of a career where security was not in the equation. I survived because I now had a man who loved me, damage and all. Today, walking toward the UCLA parking structure, seeing the patients all around me, I smiled. I had come to terms with the knowledge that it wasn’t what I presented to the outside world that defined who I was, it was who I was inside that mattered. Today I knew I would survive.
Shelly and I outside the Universal private jet-crop
18
The Enbrel Honeymoon
NOVEMBER 1997
I closed and locked the door to my bathroom, unzipped my new blue insulated medicine bag, and took out the two needles, one for drawing the water from my purified water bottle and then inserting it into the tiny glass vial with the white Enbrel powder and pink plastic top. The two alcohol cotton squares were wrapped individually. I remembered the first time I injected myself during the double-blind study, thinking it was Enbrel, but later learning it was nothing but purified water. My hands were shaking then as they shook now. The only difference was my hands are now distorted. They don’t work like they used to. They don’t look like they used to. And I am now medically jaded. I’m a skeptic. I’m a realist. I knew from the test results that some people did well on Enbrel, some got a little relief, and others continued their spiral into arthritic deformation and pain. Part of me was on a high that I had been able to weather the program and was entitled to the drug years before it became available to the public. Another part of me thought, what would be distorted next if this medicine didn’t work? How long did I have before my secret was out and my career was over? Fear and hope, fighting for space in my head.
Shelly knew not to bother me when I was doing my injections, especially on this day, the first day of my full-strength Enbrel. He was upbeat and positive. He had planned a two-week vacati
on to Italy. We had talked and talked about going to Italy and now it was a reality. The travel executive at Universal had made all the arrangements. The trip of a lifetime. Venice, Florence, Rome, and Positano. I needed to feel good. The timing of the start of the full dosage of Enbrel and the trip wasn’t exactly perfect because I only had a week of the new Enbrel before we left on the trip. I had now become fearful of not only being too far away from my doctors but also of the complications from starting any new medications. We began planning the trip in April when I had only been in the research program for a few months and thought I was moving toward remission, which later turned out to be just the positive results of stopping all the toxic drugs I had been taking over the years. I didn’t know then that I was injecting a placebo into my body instead of any medication. I had no idea that soon the good health I was feeling as the old medications exited my body would soon be replaced by the arthritis army starting their march through my joints all over again.
Now the trip was almost here, and I was starting from square one with a new medication. What if the medicine made me sick like methotrexate? What if I couldn’t walk or stand like at the Oscars? What if I ended up in bed, the drugs eating away at my stomach like at the NATPE convention in New Orleans?
Slowly and deliberately I pushed the needle through the skin of my upper thigh and watched the medicine go in as I pressed the plunger down. I could feel the medicine enter my body, slowly, making a raised white area as it lay under the skin, ready to move into my system. There, it was done. My first injection of the real, full-strength Enbrel. I pulled the needle out and looked at it, now empty of all liquid. With my slightly crooked index finger I rubbed the now red injection site, helping the medicine to disperse into my system. The rest was in the hands of who? God? The pharmaceutical company? Or would my own body decide if this drug would work or not? I didn’t know, the doctors didn’t know, the manufacturers of Enbrel didn’t know. That’s what research is. I had made the cut to this point. The question remained: How much further could I go? Would I be a good statistic or a failed one? Would I have to start all over with new combinations of my old drugs as I awaited more research drugs or would I be in remission? And why had I ever agreed to go to Italy with all of these unknowns ahead of me?
The next week I visited UCLA for my checkup. They took my blood. I filled out the same questionnaire: How has your health changed over the past week on a scale of one to ten, list all the things you are able to do on your own (buttons, open car doors, open jars), overall rate your health on a percentage chart, one hundred percent being perfect. And then came the release forms, the disclosures. Someone died from cancer, someone committed suicide, someone had a heart attack. Of course, they stated, these things could have occurred without the drug, but they had to inform us, government rules. We had to sign that yes, we knew what had happened and we still wanted to continue in the program. I signed willingly.
“Go on your trip, you’ll be fine. I’m a phone call away if you need me. I think this is going to be your drug, Christine. So far you’re tolerating it well,” Dr. Kalunian told me. He wasn’t in charge of my progress anymore. I was under the care of Dr. Bulpitt who was running the research program, but Dr. Kalunian knew me. He knew my history. He understood how hard I had fought to get this far. All the necessary lies I had had to tell and how desperate I was for relief. And in the end, Dr. Kalunian was right. I did just fine. I still packed my sneakers in my suitcase, included pain pills just in case, and took the emergency numbers of all my doctors. For the first time I also included a pair of small heels and a pair of loafers, in the hope that I might be able to squeeze into them. Sneakers just don’t look very good with everything, regardless of how creative the outfit.
My first week in Italy was good. My second week in Italy was great. In Italy I carried my blue insulated medical bag as if it were the crown jewels. It became my own personal designer bag. I placed my medicine in the refrigerator at every location. I kept my ice packs to keep the medicine cold during travel in the freezer. By my third week back at home, if it wasn’t for the damage in my hands, I was beginning to forget the chronic pain. I didn’t have to fake Sparkle Plenty. I was in remission. I was feeling good. No problems, my pain was subsiding, my swollen and inflamed joints were returning to normal. My hands didn’t shake anymore as I injected the Enbrel. I couldn’t wait to get it into my body. Two shots a week brought me closer and closer to normal. Closer and closer to the life I had lost.
Right after I got back from Italy, I went to UCLA, where my labs were improved. I filled my chart out with high marks in how I evaluated my health, and then Dr. Bulpitt, in his serious and sullen way, gave me the same high marks. Was he afraid to say this drug was working? Would something change during the trial? What did he know that I didn’t know? Or was he just sullen while I was ecstatic?
Thinking back, Dr. Bulpitt was always sullen.
19
Nightly and Me
LATE NOVEMBER 1998
Did I still have rheumatoid arthritis? I would have to pinch myself to remember my pain, my frustration, my seven-year fight with arthritis, because now I was in remission. The only reminder was my slanted hands. I had a full year of pain-free, back-to-normal living. Part of me thought maybe I’d wake up one morning, and the dream would be over, arthritis would be back. Fear still reserved a small space inside my head. Anxiety still could make my stomach rumble. My closet full of sneakers seemed to look up at me when I opened the closet door and say, “We’re here, we’re ready if you need us.” But I didn’t. Damage had made my feet still sensitive and four-inch stilettos would never be a part of my style, but I was able to wear low heels, stylish flats, and oxford lace-ups that had gathered dust in my closet over my arthritis years. My feet had grown a full shoe size from damage, and my workout sneakers still required custom-made inserts to take the pressure off where the arthritis had eaten away at the padding on the bottoms of my feet, but overall? I was healthy. I took Celebrex, an anti-inflammatory drug, along with my Enbrel shots, and between the two of them I was pain free. Dr. Kalunian was sure that at some point I would be able to wean off the Celebrex.
Reminders of past pain and difficulty in doing simple things would pop up in my head as I opened a milk carton for the first time and it didn’t hurt my fingers, or I would write out a thank-you note without my hands cramping and dropping the pen. And I no longer had to stand up and adjust pretend wrinkles in my clothing in order to get my balance. I popped up like the Energizer Bunny, batteries charged and ready to take off. It’s amazing how fast you forget pain. Like childbirth, once the pain is gone, it fades in your memory, because you have the beloved prize of a baby, only this time my beloved prize didn’t cry and wake up for two o’clock A.M feedings.
The call came the morning after Thanksgiving. Our home was filled with Shelly’s visiting family still sleeping. The holiday table was still decorated, the tablecloth still in place, now stained with gravy and cranberries. The leftovers stacked in their plastic containers and ziplock bags in the refrigerator, waiting to be warmed up for that anticipated lunch, the second turkey feast.
I was awake when the phone rang.
“Christine, it’s Magalie, from the Fox morning show. I moved over to Nightly and never had a chance to say good-bye. Anyway, today I’m working on a story about the biggest shopping day of the year, and I’d like to use you as the fashion authority.”
Because Magalie, my former producer at the New York Fox local morning show was gone when I was there last and nobody seemed to know, or want to tell me, where she had gone, I hadn’t talked to her for six months. Poof, the magic television disappearing act. One day you’re there, and the next day you’re gone and nobody seems to know what happened to you, good, bad, or indifferent. Television is notorious for pretending someone has vanished when they leave for another show.
“What’s Nightly?” I asked, trying to put the pieces together.
On the other end of the line Magalie cracked up,
“Nightly is NBC Nightly News. I’m a producer here now, and it’s the greatest.” The national network news? I have worked on local news, but never national.
Magalie interrupted my thoughts, “I’m doing a story on the day-after- Thanksgiving shopping. Are you available this morning? I know it’s late notice, but you know the news business, we always decide on stories at the last minute.”
I looked down and realized I was in bed, still in my robe, coffee cup in hand, and the latest copy of Vogue open in my lap. My hair hadn’t seen a comb since the day before. It was 8:23 A.M.
“I’d need you at the Glendale Galleria at eleven o’clock. You’ll hook up with the reporter there. He’ll have questions to ask you and basically you take him through some stores and talk about why this is such a huge shopping day,” Magalie said.
Glendale Galleria. I was in our new Newport Beach home. Glendale was over an hour away, and I had no idea how to get there. All I knew was I would have to leave by nine thirty to get parked and inside the mall by eleven o’clock. I glanced in my bedroom mirror and looked at the condition of my hair. It wasn’t looking like a good hair day.
“Well?” Magalie prodded.
“Sounds great,” I answered, taking the phone into my closet to see what I would wear as Magalie filled me in on my contact and the location for the meeting. “We’ll turn this around, and it’ll be on the evening news tonight.”
I was reeling. What to wear? No time to wash and blow out my hair. I had one hour to get myself together, print out driving directions to the mall, and get on the road. I could do this. NBC Nightly News. Yes, I could do this. Quickly I ran downstairs to get cottage cheese to coat my stomach for the daily vitamin regime I now must rush to take without breakfast. I grabbed a protein bar to put in my bag for the drive.
Take Me Home From the Oscars: Arthritis, Television, Fashion, and Me Page 17
