ITP Personal Stories

The Odyssey of My Life

What is the odyssey of our lives? What events shape the person who we are, the person we will be? Is life just a journey, to a destination point we may never reach? What is the significance of our experiences in the greater scheme of the great odyssey of our lives? I don’t know the answer to all these questions. I won’t even pretend. But I can tell you that the knowledge I draw from my experiences have brought me closer to solving these questions with no answers. This is my odyssey.

My eighth grade year started out well. I was satisfied; I had a group friends, straight A’s, and I was second singles on the middle school girls tennis team. I was a typical prep school girl; every day I’d go to school, flaunting my Tiffany’s jewelry and Juicy shirts, signs of status in my niche of society. Everything was perfect; I was in control.

I awoke one crisp fall morning to the smell of banana pancakes. It was a Saturday; I loved Saturdays. There was no school, no obligation, just a bright new day ahead of me. I slid out of bed slowly and trekked down the stairs. My father was in the kitchen; he put three delicious looking pancakes on my plate, and ruffled my hair. I smiled up at him and asked him what time did we have to leave for my blood test. He told me fifteen minutes.

I had a blood test scheduled for eleven o-clock. No big deal, I just wanted to see if my iron pills were still working. The previous spring the doctors discovered I was extremely anemic due to iron deficiency; I was feeling tired again so I was going to check my blood counts.

I remember putting on a navy blue tennis skirt and matching white shirt; I played tennis on Saturdays. Taking a look in the mirror, I opted to add warm up pants and a sweatshirt to my outfit. I had a million bruises, and it looked like I was being abused. One in particular above my elbow stood out; it was the size of my fist and a nasty shade of purple. I vaguely recalled hitting myself with my tennis racket, but could not exactly recall when. I shrugged my shoulders and went to meet my dad downstairs.

It was a thirty minute ride to my mom’s medical group in Summit. I slept most of the way there; god was I exhausted. You know how it feels like when you’re still up at six o-clock in the morning doing your homework? That’s how I felt all day long. Just standing up would cause my vision to go blurry.

I walked hand in hand with my dad into the center’s elevator. We stepped out and signed in at the desk. I walked up the stairs to find my mom. I brought her down to lab. When they finally called my name for the blood test I gripped my mom’s hand and pulled her into the small white room the phlebotomist led me to. My dad followed. I buried my head in my moms white lab coat and cried as they drew the blood. I screamed and it was over.

Later that day my father called me to his study and told me that I had to retake the blood test. Nothing to worry about, he said, just some glitch with the numbers. He gave me a smile that did not quite reach his eyes. I stamped my foot in frustration; needles scared me back then. They still do. The idea of anyone sticking things into my body that don’t belong there makes me nervous. How in god’s name are you supposed to know they’re actually doing to you? There could be poison on the needle for all I know.

The second blood test I screamed and kicked and cried even more than the first time. My mother asked for the results to be back right away. She went into the lab to ask for my platelet count. What were platelets, I thought, and what do they have to do with me? Five seconds later, my mom walked out, arms crossed, paler than I can ever remember seeing her.

She said simply “It’s real.”

And I am sitting in a chair thinking, what does she mean, “It’s real.” What’s real?

She said to my dad, “Her platelets are at fifteen thousand.”

“That’s better than five thousand,” my dad answered.

I thought, what do these numbers mean? Why is no one telling me what’s going on? The only thing my parents told me that first day was not to bump into things, or cut myself. They spent over an hour locked in my mom’s office, calling around asking for pediatric hematologist. Why are they talking to a pediatric hematologist? Is there something wrong with my blood? Do I have cancer?

We drove home in near silence; once in a while my mom would look anxiously into the backseat to make sure I was still alive. When we got home, my parents spent another two hours in the study, talking about me I presumed. My older brother David remarked that they were doing a lot of work me. All I could think was what is happening? What’s wrong with me? Why is no one telling me what’s going on?

Early the next morning we went to the emergency room. A friend of my parents had helped find me a doctor. My mother anticipated a long wait, so she bought me a book I had been wanting. It’s called Squire; it’s now one of my favorite books. I read it whenever I need an escape from the outside world.

I think about four doctors interviewed me before the pediatric hematologist came in to talk with me. He introduced himself as Peter Cole. He asked me the same questions as the rest of the doctors. Had my gums been bleeding? Did I get frequent bloody noses? Was I pregnant? Did I use drugs or alcohol? Did I bruise easily? I shook my head yes or no to these questions. I remember not wanting to reveal too much; I didn’t want him to find whatever symptoms he was looking for.

He explained to me the intricacies of the immune system using the analogy of firemen and the fire station. When there is a fire, he said, the firemen come out to put out the fire. When the fire is extinguished, the firemen go back to the fire station. He said that my immune system is like the fire station. It sends out antibodies to kill invaders; when it is done the antibodies go back to their “station.” The problem, he said, was that my antibodies were killing my platelets instead of the invaders. The antibodies were “confused”; they thought my platelets were the enemy. He said that I probably had idiopathic thrombocytopenic purpura, or ITP. It is an autoimmune disease in which the body makes auto antibodies to destroy its own platelets. Symptoms are bruising, petichae, and frequent bleeding episodes. The good news, he said, was that most children recover without treatment within two months, and it never becomes a problem again. The bad news was that until my platelet counts rose to a safe level, I would have very restricted activities. I would be allowed to go to school, but I could not play tennis, or even walk up stairs. He said that he preferred the method of watching and waiting, because the treatment for ITP has many adverse side effects.

The next two weeks were a blur. It was as if I had no emotions; I had neither pain nor joy. I withdrew myself from my social life; it was as if I forgot how to talk. The only time I showed anything but psychological monotony was when I went for my blood tests. Only then did I scream and cry and act as if my world was ending. The only activities I did were going to school, sleeping, and eating. I went through the motions of living, yet I was dead inside.

Two weeks after the diagnosis, my platelet counts were not improving. In fact, they were getting worse. I now only had four thousand platelets, a dangerously low level. Normal levels should be between two hundred thousand and four hundred thousand. Anything under twenty and one’s considered at high risk for internal bleeding, including brain hemorrhage.

I went to see Dr. Cole again, this time in the pediatric oncology clinic. It was only then that I fully realized what could happen to me. I sat in a soft blue chair and looked at my surroundings. There were about a dozen kids; half were bald, all looked sick and had IV drips. They all looked so…surreal. It’s as if they were ghosts of their past selves. That’s what scared me the most; they looked almost empty, as if they could not see beyond the red walls of the oncology department. One of the nurses pushed an IV into my elbow, making my whimper. As the hydrocortisone seeped slowly into my veins, the emotional pain of the past two weeks began to sink in. Then I made possibly the biggest mistake of my life up to that point; I held that pain inside me, not even allowing a tear to fall out of my tired eyes.

The chemotherapy room is one of those rooms that I will never forget. It was smaller than my bedroom; the high backed chair placed in the center of the room rose out the floor, seeming small yet forbidding. The walls were white, the cabinets blue. There was a tray next to the chair with a variety of syringes on it. The nurse selected a syringe, and administered what is referred to as an IV push. As she “pushed” this medication called WinRho into my veins, I had a weird sensation that I will never forget. It felt as if I was being filled to my full capacity, that if one more drop and I would explode. That’s the best I can describe it.

I went to school the following day feeling very tired. That’s the side effect of the treatment: headaches, nausea and fatigue. This “treatment” that I received tries to “trick” the immune system into killing my red blood cells instead of my platelets, which is quite an interesting trade. But this trade worked; three days later my counts were over a hundred thousand and remained that way for four week! After a month, my platelets dropped to eighty-five thousand. After all, the treatment was only supposed to last four weeks. But luck was with me, and my counts rose to over one hundred thousand and stayed there. Dr. Cole declared that I had reached a spontaneous remission, and that I was cured unless I became pregnant.

The winter that followed is the darkest in my memory. Although I was physically recovered from my disease, I was still emotionally unstable. I do not talk in entirety about that dreadful season that passed, but I will say that those months were filled with the emotional agony of my disease that I had refused to release.

In March the sun began to shine again; the winter finally ended. I began to pull myself out of the dark hole I had dug myself into; I was ready to start anew. But with this newfound hope came curiosity; unable to let go of the past, I began to wonder about my cured disease. I had so many unanswered questions. My parents had told me very little about ITP; I didn’t even know the mortality rate. I began to do research on the Internet. The gentle hope that had been growing inside me diminished as I read stories of patients who had fallen out of remission after many months or even years of being “cured.” I read stories of patients who had died from brain hemorrhages or excessive blood lost. Apparently for a healthy thirty year old, I read on one website, ITP chops off an average of twenty years of life. With this knowledge came pessimism; however, I assured myself that I truly was cured. My doctor said so, hadn’t he? A good doctor, well educated with lots of experience.

I was taking out my earrings one day during spring break when I noticed that my ear was covered with clusters of little red dots. I froze. I inspected the rest of my body. There were bruises on my thighs and stomach. I scraped my nails across my chest to test myself; the little red dots came up. I stared at myself in the mirror, panicking. What should I do? I had two choices: go in for a blood test, or ignore the symptoms. I chose to ignore the symptoms. The doctor said I’m cured, there’s no reason to panic, I concluded. Better to enjoy my vacation than get a blood test.

I went to Puerto Rico for a week. The sun was brutally hot, with UV ratings of 10+. I was burnt, and blood blisters formed on my nose. More bruises appeared on my body, but I disregarded them, saying that I must just be clumsy.

I sat in the airport with my family, sitting next to my older brother David. He was pointing out my blood blisters. Suddenly I could hold it in no longer; I told him I was bruising again. He informed my parents. I denied it, feeling betrayed. It wasn’t possible that the ITP was back. I’m cured! The doctor said so! Spontaneous remission, remember? Nevertheless, the day we got home I went in for a blood test. My platelets were down to twenty thousand again. I have expected this, but it didn’t minimize my fear that perhaps this ITP was more serious than originally thought.

Dr. Cole pronounced that my ITP was chronic, and that I may have to deal with my yo-yoing counts for the remainder of my life. He again suggested watching and waiting. I agreed with him; I didn’t need all of the side of medications that do not work in the long term.

Since that March, my platelet counts have been up and down, a constant yo-yo. I have been as high as one hundred fifty thousand, and as low as eleven thousand. I have learned to live with the day to day roller coaster rides and trepidation of new platelet counts. I will never “triumph” over ITP; its existence will shadow me for the rest of my life. But I have triumphed over this experience and my former self, because I have changed for the better.

I would like to say that I have learned to live every day to its fullest. But truth is that I don’t. Tomorrow is just as important as today; it is necessary to prepare for our future. I don’t live every day as if it’s my last for the same reasons. But I have learned to live life with no regrets, and to take advantage of the opportunities given to me. If I died tomorrow I would want to know that I could look back on my life and say that I had made the right choices, that I did always did the right thing. I want to know that I took advantage of every opportunity, that I gave help to any person who asked for it. This outlook on life has led me to be the person I am today, one different from the materialistic, adolescent girl I was before ITP.

I make an attempt to change the world in little ways, whether it is smiling at people in the hallway, tutoring disadvantaged kids, or donating money to charity. I am determined to leave my mark on the world, to not be forgotten. I have a better understanding of people; I am more sympathetic to other people’s needs. My ears not only hear, but they listen and comprehend.

ITP is part of my coming of age experience. It forced me to grow up fast. I am not fully mature yet, but I know that when I am, ITP will always be a part of my identity. Had I not had ITP would I be a different person? Probably. I can say without a doubt in my mind ITP changed me, and it changed the course of my life. I would not take back the knowledge I have gained from this journey for anything. But now it is my duty to help others learn from my experience by sharing my accounts, and by sharing my life in a book. If I reach one person with my story, then all of my suffering I endured to get to this point in my life was worth it. But my journey with ITP is only a part of the great odyssey of my life. My odyssey has only just begun.