by Amy Baker
My brother said he saw a band of dogs once that were really skinny and had no hair. They were about a foot tall and had big eyes. He said they were sniffing cars’ tires but quickly trotted away when they saw him. I laughed when he told me, picturing a bunch of lanky, pink-skinned dogs running around. I laughed—until he said that they had a disease.
I had never heard much about Parvo virus before. I thought it had to do with dogs and cats and tapeworms. I wondered if Parvo was the disease the dogs had that made them lose their hair. Someone told me animals die from Parvo. Their dog had it, and it stopped eating.
We had the same dog for nearly fourteen years. She was a gorgeous golden retriever. People used to stop us on the street and tell us how beautiful she was. People think dogs can’t smile, but she could. We would scratch her back and examine her teeth, and come to the conclusion that, “Yep, yep, she’s smiling.” We didn’t treat her like a human, but she thought she was one. She was always healthy and fairly energetic, and then she got a tumor and died. It wasn’t because of the Parvo disease—it was cancer.
The word reminds me of death. Perhaps it is because my dog died of cancer. Perhaps because my dad had cancer, though he didn’t die. I think of a little girl I know cheerfully reading a picture book with her parents on the third floor of a Hollywood hospital, while the invisible cancer grew inside her. She had no hair.
I began to get bruises on my legs in February of 1996 after I went skiing for the third time in my life. I was confidently flying down a blue diamond run at Sundance Ski Resort near Provo, Utah. I heard a groan from behind me and then a “Whooooaaah” and a man barreled into me. My skis flew, and so did I. I finally stopped after thirty feet of sliding. The man who crashed into me was near the bottom of the mountain. I guess he was sorry, though he was too far away to yell it. My legs throbbed as I began the search for my skis. I knew bruises would follow. I just didn’t know they would be massive.
The bruising on my arms was worse than on my legs. I went to a church activity at the park and played grass volleyball one night. Our team won. We laughed and slapped each other high-fives. Later that night, my entire forearms were dark blue and covered with tiny red and blue dots. Playing volleyball had never done that to me. People would gasp at my arms, and I would show them and laugh about it because they looked a lot worse than they felt. I even took a picture of my bruises to send to my family in California.
I thought my family would be surprised too, and laugh, because that is what I did. They didn’t. My mom first asked me if I was eating. She suggested that I go to the doctor when I got home. I flew home to California after finals in April. When I took a shower that night, I noticed huge bruises on the back of my thighs. They were from sitting on the airplane seat.
The next day I went to see a doctor out in North Hollywood. She asked how my year at college had been and then checked my ears with those pointy ear-lookers that have little lights. She asked if anything else was wrong. I showed her my bruises. She looked at them and acted nonchalantly, as if everyone went in there with serious bruising. She told me to have a few blood tests done and to go home. I shrugged, concluding that I needed more iron in my diet, and left the clinic without answers. on the way home I thought of my boyfriend, Matt, who told me that they thought he had leukemia when he was nine. Matt was hospitalized for three weeks. His mom tells of how when she touched his arm it left a bruise in the shape of a handprint. His body had nearly stopped producing platelets, the blood-clotting cells. He had to have a bone marrow test where they stuck a long needle into his lower back to penetrate the spine. The tests came out negative for leukemia. What he did have was idiopathic thrombocytopenic purpura—commonly called “ITP.” That’s a very long name for a platelet-destroying pathogen in the body. (Originally, I had thought Matt made the word up!) Doctors don’t know what causes platelet destruction with ITP. (ITP is different from hemophilia—with hemophilia, at any given time your body doesn’t produce enough platelets; with ITP something in your body destroys platelets you have already produced. Both diseases cause severe bruising.)
I had severe bruising. Within three hours of the time I arrived home from the clinic, the phone rang. It was Dr. Baer.
“Guess what,” she said and sighed. “I have news for you.” I sat Indian-style on the blue carpet of my room as my heart beat faster. I leaned forward, as if trying to get closer to the doctor’s voice. “You have something called ITP” she said.
I almost laughed. “You mean idiopathic thrombocytopenic purpura?” I said. “My boyfriend had that when he was little.”
All I could think about was how Matt was never going to believe me when I told him this one.
“You are going to have to come in tomorrow and the next day for eight hours of IV in the oncology department.”
Oncology means cancer, I immediately thought. My attention heightened. I felt as though someone had snapped their fingers in front of my face. I grabbed a pen and the nearest piece of paper I could find to write notes.
“Your platelets are being destroyed and we don’t know why. We are expecting to receive tests back soon to find out if a virus is causing this or if we’ll need to do additional tests for leukemia.” I took notes furiously. She said that a normal person has between a 150,000 and 250,000 platelet count. If the platelet count falls below 10,000, internal organs can begin to bleed and there is no way to stop the bleeding—the patient dies. She said my platelet count was 13,000.
I froze. “What’s this IV deal?” I asked. Thoughts of HIV and contracting other diseases from infected blood transfusions saturated my brain. She explained that it was gamma-globulin, a man-made substance that would coat and protect each individual platelet cell. She explained that having the IV treatment tomorrow was crucial to my staying alive. With my platelet count at 13,000, if I bumped into anything the internal bleeding would likely nor stop and I would have to be hospitalized. I made arrangements with her to arrive at the oncology department at 8:00 a.m. the next morning and asked if she could be reached later. I knew my parents would want to talk to her.
Joanne, the nurse, typed my name into the computer and told us we could wait in the treatment room. The first thing I noticed were the room’s big window’s. The walls and floors were white. My mom and I each sat in one of the purple reclining chairs that were against the walls below the windows. Hey purple chairs! I remember thinking. These chairs are the same color as my bruises!
That’s all there was in the room, lounge chairs and small television screens clamped onto the ceiling. The rest of the room was open space. Out the windows, beyond the chaotic city streets that were under construction, I could see the ocean and Santa Monica beach. Catalina Island would have been visible, if it weren’t for the smog.
My eyes shifted from the window when Dr. Sleight emerged from his office. He was tall and bald. He wore a bright blue Hawaiian shirt with gaudy flowers and white pants. I thought the shirt was humorous, though I remember thinking, Are they allowed to wear things like that?
He smiled and shook my mom’s hand, introducing himself. He began to explain the intravenous procedure. He said there was no risk of transferring any diseases during the treatment because the gamma-globulin was man-made. The IV was imperative, he said. He reminded me that my platelet count was 13,000 and if it dropped below 10,000, I would have serious problems. My mom and I still felt apprehensive. Everything had happened too fast. The day before, I had gone to the doctor thinking she was going to tell me to eat more bananas or vitamins. Now I was going to have intravenous treatment. I had never even broken a bone before.
We believed the doctor, though, despite his casual Hawaiian shirt that somehow made him seem less professional. I guess he just had a good sense of humor. He immediately called the lab and asked them to send up the bottles of gamma-globulin. The procedure would take about eight hours that day and eight hours the next. Great, I thought. Sixteen hours in purple reclining chairs with the beach out the window to long for.
The nurse said the IV might make me sick initially. She was right. After eight hours, Joanne removed the needle from my hand with the care of a gentle mother. I winced as the blood poured out. I couldn’t handle the sight or thought of blood and injuries.
My mom drove me home. I was achy and dizzy and almost couldn’t walk. I threw up fourteen times when I got home. My dad and our neighbor, the former bishop, gave me a priesthood blessing that night. I wanted to go to sleep and stop throwing up. I remember feeling that the blessing would give me relief for at least a few hours. It did. I fell asleep.
The next morning I awoke with another eight hours of IV and throwing up to look forward to. Dr. Sleight greeted us in the treatment room with a smile and white pants identical to yesterday’s. He was wearing a yellow Hawaiian shirt this time. I wondered how many pairs of white pants he had and how many times he had been to Hawaii.
“Good news, Amy!” he proclaimed. “You have a virus.” My mom and I sat confused as to why that was good news. “With ITP we don’t usually know what is destroying platelets,” he said. “Bur your blood has tested positive for a virus, so we have a better idea of the nature of the beast. You have something called Parvo Virus B- 1 9.” Parvo! That is the dog disease that gives them tapeworms or something. Dogs die from that. They stop eating. I wondered if they lost their hair. My mom must have been thinking the same thing, because she immediately spoke.
“Isn’t that the same disease that dogs and cats get?”
“No!” the doctor said, nearly shouting. He seemed almost offended. “They are completely different! Humans cannot get the Parvo disease that animals get.” My mom turned to me with
a “sorry-I-asked” look. He nodded seriously. “It is not the same disease, and Amy will not die from it.”
The second day of IV treatment went better than the first. I had a severe headache still, but I didn’t throw up. The doctor suggested that I come in tomorrow for a third consecutive day. I would only have a blood test, though, to ensure that the gamma-globulin was working. I then knew where I would be spending my summer—at the hospital.
I began to go to the hospital each week for a blood test to determine my platelet count. If my count was under 50,000, I stayed for eight hours of IV that day and come back for eight hours the next day. I ended up having an IV treatment every third week.
I did not realize at the time how serious it is when platelets are destroyed. During the time that I discovered severe bruises my freshman year at BYU, I made my roommate, Mandy, come with me to donate plasma. (They pay you for your plasma.) The assistants at the plasma center first checked our veins to see if they were big enough. They then told us that they were sorry, but we would have to come back another time. The electricity had gone out.
Mandy and I walked the six blocks home, disappointed not to have gotten paid, but secretly relieved to be getting away from long, sharp needles. What I really should have felt was lucky. If they had stuck a needle in me at that time to remove blood and plasma, I probably would have had to have been hospitalized. I am sure my platelet count was low at the time because my arms and legs were covered with bruises. My body would have had no way to stop bleeding. I could have bled to death.
I didn’t feel sick. I had a virus in my blood, but I didn’t feel different. I got up early and ran two to three miles every day, even on IV treatment days. I lived my normal life, working for my dad’s exchange student company every morning and going out with friends at night. I even went on a four-day backpacking trip to Yosemite National Park in late May, though I probably shouldn’t have. (I didn’t tell my doctor about that one.) The thing that slowed me down was fatigue. I was tired all of the time. I would fall asleep everywhere. At times I lacked the energy to get up, and I would doze off.
My nurse suggested that I not run everyday. She said I needed to allow my body to rest. I had played sports and been active my entire life. I didn’t want to stop running. It seems like such a small thing, but I didn’t think I could live without exercising.
I lived. I was lucky. Some children who regularly received treatment in the purple-chair room of the hospital have already died of cancer, mostly leukemia.
Besides myself, there were nine other “regulars.” They were children who were receiving their treatment at the same time as me. We would smile and say hi, though we didn’t talk much to each other. The only way we knew each other’s medical stories was through observation. There were two boys who always got a mustard-yellow liquid through IV. They were receiving platelets. I wondered if they had hemophilia. I never asked them about their diseases or their lives, nor did they ask me. We just smiled.
I remember one day, when there were only a few people in the room. There was a beeping sound and the nurse gently took the needle out of a little girl’s hand. The nurses loved the children and grew attached to them. One nurse, Joanne, said it tore her heart to work there because children suffered and died a lot of the time. Joanne was a master at IV needle-removing. She could do it with one quick sweep and it didn’t hurt as much as when the other nurses took needles out. Joanne was careful, but the little girl whimpered softly when the needle was removed. She clenched her mother’s arm and tears streamed. The mother stroked her daughter’s hair. Joanne put a soft gauze pad over the puncture wound and smiled.
“Is that your favorite book, Sophia?” The girl nodded, her bottom lip jutting out, and she sniffled. She was reading it the last time I came. The girl s sobs died down when Joanne kissed her forehead. Joanne said it tore her heart to work there, but it must have also fed her soul.
I sat across the room that day with an IV needle in my hand. It was secured with large amounts of tape. I had brought several books to read, but I watched Oprah and Montel Williams talk shows for an hour or so. I seemed to forget about viruses and treatments and leukemia while I watched daughters bring their mothers on the talk shows to get makeovers.
Finally I turned off the television to study Spanish vocabulary words. I was enrolled in Spanish 345 class for fall semester and was nervous that the class would be difficult. My dad gave me the vocab words. He is a high school Spanish teacher.
My IV beeped. Joanne came to push buttons on the digital flow regulator. I asked her how much longer she thought the treatment would take that day. She checked the amount of fluid left in the bottle, looked at her watch, and told me it would be another three to four hours. I smiled and thanked her. I remember, at that moment, wishing I was at the beach.
I am sure all those little children that I saw in the treatment room also wanted to go to the beach instead of the clinic. But they couldn’t. Much of their lives was spent there at the hospital receiving IV fluid or having tests done. Many of them went to the hospital at least twice a week; some went everyday. They did it to stay alive.
Many times I would sit in the purple armchair and count the hours that I had left of IV treatment. I knew that my Parvo virus would go away after it “ran its course” and I would be better. If the virus didn’t leave, removing my spleen would solve the problem. Dr. Sleight didn’t want to do that though, because it would be a major operation and I would have to take pills everyday for the rest of my life. He said he was hopeful that the virus would eventually leave, though it might take two years.
The little children that I shared the treatment room with did not have that comfort. They did not know when they were going to ger better. Many probably never would. Some would not live to see their next Christmas.
One day a girl named Sandra came into the clinic. She was probably about twenty years old. I had seen her previous times, but she never got IV treatment. Most of the time she just sat in the room and waited to see the doctor. One of the nurses paused to look at Sandra on her way to check a boy’s IV flow regulator.
“You got a new wig!” the nurse said. “It looks so good!” Sandra was beaming. I smiled too. It did look good. I didn’t know Sandra wore a wig. I supposed she had lost her hair from chemotherapy.
I sat in the purple armchair and watched the school-age children receive IV while doing their homework. Two brothers always did math together. Their parents never came to the clinic. They probably just dropped them off and picked them up. The process had become a routine, a part of their lives. I thought of their mother asking them later that evening how many math problems they had finished that day at the clinic.
The armchairs were big and comfortable. I remember the feeling of their fibers on my skin and their stale smell, like they’d been taken out of a home’s front room that the family rarely used. You could almost fit two of me in one of the chairs, three of the little kids. I had difficulty falling asleep in them, though. I was afraid I would move around too much in my sleep, and the IV needle would come loose. One day I did fall asleep and the needle slipped. I woke up and the top of my left hand was swollen almost an inch and a half higher than normal. There was a big bubble under my skin. I looked at it and felt like I was going to faint. The nurse hurried over and quickly removed the needle. She said the gamma-globulin fluid had seeped into my tissues, but that the swelling would go down within a few days. I was relieved.
I began to feel more grateful for good health. My body was not completely healthy, but I was glad to be alive. I was able to run and hike and do things that I loved. I could breathe without a respirator, and I could walk. I had forgotten that health and our very lives are such blessings.
Dr. Sleight began to be concerned about what would happen in the fall when school began. I had planned to go back to BYU and was registered for September classes. I was greatly looking forward to it. The question was how I would receive my IV treatments. The closest hospital that accepted our medical insurance was in Denver. One plan was to fly to Colorado every three weeks to receive treatment. My mom suggested that I fly home, though, because I knew the California hospital and staff well. We discussed the subject a bit more and tentatively decided that I would get a blood test to determine my platelet count each week in Provo at the BYU Health Center. I would have the Health Center fax the results to Dr. Sleight. If my platelet count was low enough, I could take some special steroids or fly home for a weekend of IV treatments.
As my mom and I talked one afternoon about plans for the school year, Dr. Sleight went back into his office. He emerged a few minutes later with a lei of artificial flowers around his neck. He was grinning. “How about transferring to BYU-Hawaii?” he said in a salesman voice. “We have a clinic in Hawaii that accepts your insurance!” I laughed. Going to Hawaii sounded like paradise to me. But I shook my head. Everything had been arranged for me to return to Provo. I had paid my tuition and my first month’s rent. My friends were there. I was going back.
I left for Provo two days after an IV treatment on August 24th. My platelet count was high due to the gamma-globulin boost. I said goodbye to my family and then stepped on the plane, wondering if I would be back three weeks later.
I didn’t think much about platelets while at school, though I went to the Health Center each week. At first my count was a high 125,000 from the recent IV in August. Then it began to drop. One week it was 69,000. Dr. Sleight had set the rule that if my platelet count went below 50,000, I would have to fly home. However, after a month my platelet count began to be stable. The lowest it got at school was 65,000. I never flew home. I concluded that the virus had left.
I wonder sometimes at the curiousness of the experience. The electricity went off in the plasma-donating center before I knew I had a virus. The virus gradually went away after I returned to school. I know people prayed for me. Older ladies in my ward’s Relief Society came up to me and said, “Hope you get better sweetie. We’re prayin’ for you.” I appreciated that. My brother wrote to say that his entire missionary district held a special fast for me. They included me in their prayers. I was instantly grateful to them. I think all those people are why the virus left my body and I got better. (Actually, I don’t know if the virus has left. It may still be in my body. My platelet count has gone up, though, and I consider myself better.)
I continued to have my platelet count monitored. I began to go to the BYU Health Center once a month instead of once a week. My count remained steady at 80,000 or higher. I remember the day my count rose about 100,000. I gave the nurse who drew my blood a high five.
One night in Janu ary, my mom called. It was near midnight. “Amy, I have to tell you something,” she said. I sat Indian-style against the wall in my apartment in Provo, Utah. I was in the living room and the lights were off except for one small desk lamp in the corner. “Amy, Joanne called me,” she began. Joanne was the nurse from the oncology department in California. “She said that you can’t fax your platelet count results here anymore.” My curiosity heightened. was the hospital’s fax machine broken? Did I need to start seeing a doctor in Provo instead of Los Angeles? Was I all better? My mom began again. “Amy, I just had to call you really quick and tell you this.” She was silent for a few seconds. “Dr. Sleight is dead.” I gasped. The sound was so loud that my roommates woke up and came into the room.
“What? How did he die?” I asked. Thoughts of diseases ran through my head: AIDS, Parvo, cancer. He had lost all of his hair.
“He was killed in a car accident,” my mom said. I was stunned. I could see Dr. Sleight smiling at us with his bright Hawaiian shirts, suggesting that I transfer schools and go to BYU-Hawaii.
My mom and I spoke a little more and then she had to go. I hung up the phone and was left in shock. My virus had come unexpectedly. I went through a summer of painful and seemingly tedious IV treatments, the last one being two days before I returned to BYU in September. I had not had another treatment since. The virus seemed to have disappeared. And my doctor was now dead—not cancer, not Parvo, but a car accident.
On the third floor of the Kaiser Hospital on Sunset Boulevard in Hollywood, Joanne still tends to the IV’s and needs of bright-eyed children. I know she loves them and their families. Many of the children that were there when I was probably continue to visit the clinic regularly for treatment. They do so to stay alive.
I attend BYU. I have not been to the oncology clinic for a year and a half. The last time I got my platelets checked was four months ago. I have a jogging class and run twelve to eighteen miles a week. I count myself lucky to have good health.
But I remember well the oncology department. I admire our nurse, Joanne. She became a part of our lives. More than once, I remember a little child who died of leukemia, and Joanne had to call and tell their family. I think of the children there. Although I don’t really know them, I feel drawn to go back and visit. I cannot begin to know what it is like to deal with the physical and emotional difficulties of having cancer. But I want to tell the children that I love them. I want to tell them that they inspire me. For two short months, we seemed to share a common understanding because we sat fighting diseases on the threads of purple armchairs.
Sometimes people do not know how to act around those who are different. Before I had a virus, I was never afraid or nervous around people who had illnesses, but I was ever aware of their disease or handicap. I would observe how they acted and performed tasks that I took for granted being able to do. When I spoke with people who had a disease, there was a little cuckoo clock in my brain that, every so often, would come out and say, “Oh remember that he has cancer,” or, “How remarkable that she does all of these things even though she has AIDS.”
What I learned was that the illness is a part of their lives, but it is nor their whole lives. I went to the doctor every week when I had Parvo virus. I had to stop doing some things I normally loved to do. I went to the doctor around the same time each week because I had to. Then I went on with my life.
I think of people with illnesses differently now. I still admire many of them, but my little reminding cuckoo clock is gone. People may have tubes in their noses or have to pull an oxygen tank, but I see them as I see everyone else. I do not think of them as different anymore.
I cannot imagine what it would be like to have cancer. I think of how I sat in a purple armchair next to children with cancer, each of us with an IV needle in our hands. I remember feeling selfish because I had already grown up. I was nineteen. My disease would go away. They were little children, beautiful and full of energy. Many would probably die soon. But they didn’t think about that. They were kids who wanted to play as every child does. Their parents cherished each day.
I think of the day I will return to the clinic. I imagine myself driving through the busy streets of Los Angeles on a warm Friday in June to visit a room full of big windows, purple armchairs, and young children receiving treatments. This time I will no longer feel beckoned by the beach out the window, but by the smiles and silent courage of a stalwart group on the third floor.