My Life with Tumors & Cancer

By Brian Soto

This book is about life, a life lived with struggles, surgeries, pains, hospitals, and needles. Throughout this journey, the author’s mom and family have been by his side. He has faced many obstacles, dealt with adversity and the effects of his fight with cancer that has had on his body.

• Language: English
• Publisher: Page Publishing, Inc.
• Release date: Nov 16, 2017
• ISBN: 9781640827462

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My Life with Tumors and Cancer

Brian Soto

Copyright © 2017 Brian Soto

All rights reserved

First Edition

PAGE PUBLISHING, INC.

New York, NY

First originally published by Page Publishing, Inc. 2017

ISBN 978-1-64082-745-5 (Paperback)

ISBN 978-1-64082-746-2 (Digital)

Printed in the United States of America

My name is Brian Soto. I was born on July 19, 1987, in White Memorial Medical Center in east Los Angeles. When I was just a year and four months, my mom started to notice that I was unable to hold my bottle and that I kept bumping into walls. And then she noticed that I was unable to walk. So she decided to take me to the doctor. The doctor checked me over by checking my heart, my reflexes, my ears, my breathing. The nurse told my mom that it was OK to take me home, so she did. Then, she noticed that it kept happening, so she took me to the doctor again the next day. The nurse told her, Why did you bring him back? I told you he is OK.

My mom told her that I was not OK, and now I was unable to walk. The nurse just told her that I was just being lazy, and my mom told her that she did not know me like she did. All the nurse could say was, Fine, we will take him to take an x-ray.

My mom took me to the doctor two or three times before the nurse got mad. And when the x-ray was taken, that’s when the nurse found out that I had a brain tumor on the right side of my head.

When the nurse told my mom that she was right, my mom was mad because the nurse thought that she knew better than her. The nurse told her, Go home and pack your bags for you and your baby. We are transferring you to Children’s Hospital in LA. Your son has a brain tumor.

We got to the hospital, and by time the doctors found the tumor, it was the size of a baseball. And thanks to that tumor, I was unable to see out of the corner of my left eye. And that was why I was unable to hold my bottle, and that’s why I kept bumping into things. When we got to the hospital, they rushed me to the emergency room for the operation to remove the tumor. And they did. After all that, I was OK. After I had my first tumor, I had a shunt put in my head. The shunt allowed me to go to the bathroom without any problem. Without it, my head would fill up with water and get very big. I still have the same shunt today, and I never had any problems with it.

Then, at the age of four, that’s when I had my second brain tumor. In the exact, same spot as my first one. But this brain tumor was different. Unlike the first tumor that affected the corner of my left eye, this one made me sleep a lot. This tumor made me sleep so much that it made me sleep like I was in a coma. But the only difference was that I could wake up. But the only time I would wake up was to eat or go to the restroom. After that, I would just go back to sleep. And then as soon as I went back to sleep, nothing would wake me up, not even my mom. Every time she tried to, I would just tell her that I was too tired. And so she would just let me sleep. But even if she managed to wake me up, I would just go back to sleep anyway. That’s when my mom decided to take me to the doctor.

She told the doctor that there was something wrong with me because I have been sleeping a lot lately. The doctor just told her that I may just be tired. My mom told the doctor that it could be, but that it was not normal for someone to sleep as much as I did. The doctor said, OK, we’ll give him a checkup and see what’s wrong.

Again, like the last time when I had my first tumor, all they did was check my heart, my eyes, my reflexes, and breathing, and when the doctor was done, he said that I was OK. My mom said, No, he is not.

And that’s when my mom told him about my first tumor, and the doctor said it could be it. My mom said, How do you know that? What makes you think that if he had it once, that he could not have it again?

You’re right. We will give him a full examination, the doctor said.

And that is when the doctor found my second tumor. That’s when the doctor told my mom that she was right, and that she should take me to the hospital. So she did. It was my mom, my two brothers, two sisters, and I. They had to come along with us because they were still too young to be on their own. So my mom drove us to the hospital where she checked me in and got ready for the operation. But like the first tumor, it was just a basic tumor. So it was easily taken out.

But then again, at the age of seven and a half to eight years old, that’s when I had my third tumor in the exact, same spot as the first two tumors that I have had. But like the other two tumors that I had, they affected me in a different way. This tumor was not any different. But this one gave me very strong headaches. And the only way they would go away was if I threw up. Yeah, the headaches were that strong that they made me throw up. And as soon as I threw up, the headaches would go away just like that. And that would happen to me every day, sometimes more than once a day. I always got sent home from school because of the headaches and throwing up.

It was happening so much that my mom decided to take me to the hospital. The doctor took an x-ray of my head and found out that I had another brain tumor. But this time, it was different. It was cancer.

But the doctor did not find out that it was cancer until the operation took place. And then, that’s when the doctors found out that I had cancer, but the cancer was too advanced to take out. Then, the doctor had a meeting to decide what to do. The meeting took seven and a half hours. Meanwhile, my mom was wondering what was taking the doctor so long to tell her anything. Finally, the doctor came and told my mom that he had bad news. That I had cancer, and that it was too advanced just to take it out without causing any brain damage, and even if they did take it out, it would just grow back.

But that’s when the doctor also told my mom that the cancer was also rare and unknown, and that they did not know what could kill it. So what the doctors decided to do was to cut off a piece of the tumor and run tests to see what would work to kill it. Then, the doctor told her about a new treatment that might kill it, but the treatment had not been tested, so he asked my mom what she wanted to do. My mom just asked if we had any other choice. The doctor just said no. So if they didn’t use the medicine, I could die, and if they did use the medicine, I could either be saved or be killed anyway. But it was a chance of saving me so that we took it after my mom gave him the OK.

Soon after, I started my treatments of chemotherapy and then radiation. But in order to get the radiation treatment, I had to go to another hospital because Children’s Hospital did not have it. So my mom and I had to take an ambulance from Children’s Hospital to Kaiser Hospital, which wasn’t that far. It was just a couple of blocks away. The first time I went to Kaiser was fun because I’ve never been in an ambulance before, and one of the ambulance men did a magic trick on me and pulled a coin out of my ear and let me have it.

And that’s the way it was, going back and forth from one hospital to another for almost a year. The treatments were so strong that I started to lose all my hair, but at the time, I did not know that I was losing my hair. So one day, my mom slept on the hospital bed with me, and I told her to move her hair because it was itching me, but my mom told me that it wasn’t hers. It was because I was losing my hair. The treatments also made me hallucinate. I would see people walking past my bed.

I would also see all the scary movies that I had ever seen playing right in front of me without a TV or VCR, and that really scared me, but it was due to the radiation and chemotherapy, but then, it stopped. But one day, the chemotherapy and radiation made me so sick that I started to throw up. But the only thing I threw up was the medicine and old blood. I also had a very high fever of 103 to 104. But inside my body, I was freezing. My fever was so high that the doctor put me sitting in a big tub full of cold water and ice to try to lower my fever, but nothing worked. Meanwhile, I was still throwing up medicine and blood. The doctor hooked me up to another machine to give me new blood, and at that time, I got so scared that I asked my mom if I was going to die. She said, No, you are not.

And then I told her that I was cold, and that’s when one of the nurses got some blankets and put them over my body to keep me warm. After I finished the chemotherapy and radiation treatments back in 1997, the cancer was gone.

But chemotherapy and radiation damaged all my body. It damaged my throat, and I was unable to eat, but the nurse did not believe me, and she said that I was just being a brat and in front of my mom. My mom got so mad and told a doctor of what happened, and that she did not want the nurse to take care of me anymore. When I did try to eat, I would only take one bite and get full. I would try to eat hospital food and fast food, but it was the same thing. When I started to lose weight, the doctor decided to run tests and give me liquids through my IV. The doctor also decided that they should put me to sleep and stick a very small camera down my throat to see what was wrong with me. That’s when the doctors found out that my throat was very burned and swollen, and that I was not lying.

That same day, the doctor came to see me and told me and my mom that I was right. My throat was burned and swollen, and that’s why I was unable to eat. I was so mad because the doctors were just thinking that everything was OK when it wasn’t, and he thought that I was lying. Due to my throat being damaged, I also had gas problems, so I had trouble burping. So to help me burp, I have to take medicine for it for the rest of my life. Without it, I would have very bad heartburn.

Due to fact that my throat was burned and swollen and that I was unable to eat, the doctor said that I would need to have an operation to fix my throat. He also said that I should not eat anything hard, like chips, because the sharp ends would cut my throat and cause me to bleed. But it was hard not to because my throat would get so itchy that I could not take it, and the only way it would go away was to eat chips. The kind of chips I would eat were Lays. The chips would scratch my throat, and the itch would go away. But every time the doctor came to see me, my mom or I would have to hide the chips so the doctor would not know, and I would not get into trouble.

But one day, I got caught eating chips. And the doctor asked me what I was eating. I said chips. And I told him about the itch in my throat, and eating chips was the only way it would go away. And it turned out, by not doing what the doctor said about eating chips, the chips helped in healing my throat, and I did not need to get the operation after all.

And due to chemotherapy and radiation, it made my skin very dry and made my veins difficult to see, and it was hard for the doctors to find my veins, and I had to get poked more than once in order to take out blood. That’s when the doctor decided that he should put a line, but first, I needed an operation to put something in my chest. It was like a little block that the line was attached to by a needle. It was put on the left side of my chest, but I only had it for a month before it got infected, and the doctor had to take it out and put it in the right side of my chest. It was placed over my heart. The needle would connect to a block over a vein that led to my heart. It made it easier to take out blood and for the doctors to give the medicines I needed.

I had the line for two years before the doctor decided to take it out so they could put a new one in. This one was a short tube sticking into my stomach, and I only had that for months before they switched it to a button sticking into my stomach to make it easier for me instead of dealing with a tube that kept getting in the way. But first, I needed a small operation to make a small hole over my bellybutton that led to my stomach. That way, the liquids would go straight to my stomach. I had the G-tube for a long time. But once I was able to eat, there was no need for me to have the G-tube anymore, so the doctor took it out. The doctor said the hole should heal on its own, but it didn’t. I spent months dealing with that because every time I drank something, the hole would leak, so my mom took me to Children’s Hospital to close it. But to close it, I had to get an operation, so I did.

The chemotherapy also burned my skin and made it very dry, and it was hard to live with my skin being that dry because during the winter, my skin would get very itchy and very dry. And sometimes I could not take it. It was even hard for me to take a shower because the cold air would make my skin itch. But during the summer, my dry skin would fall off; it was the same thing every winter and summer, even now, but I learned to live with it.

And it also stunted my growth, and at the age of fourteen, the doctor said that I needed to start getting shots every day so I could grow. So the doctor showed my mom how to give the shots. Once she learned how, she gave me the shots three times a day—morning, noon, and night.

When I was still a kid and I was still sick, I remember telling my mom that if she ever left me in the hospital by myself that I would kill myself, and I happened to say it in front of a doctor, and he thought that I was suicidal, and they called in a therapist to come and talk to me. But I would tell him to go away because I was trying to watch cartoons, and then he would ask me what I was watching just so I would talk to him. And he even started to watch cartoons just so he would be able to talk to me. But the fact was that I was not suicidal. I was just scared to be alone.

When I was younger, I hated the way I was born so much that I wished that I was never born. So what I did was just stay in my hospital room, watching cartoons on TV, because I didn’t want anybody to see me. I stayed in my room so much that I forgot how to walk. So the doctors said that I needed to relearn how to walk. And to relearn how to walk was hard. I first needed to learn how to support myself then balance. As time passed, I got better and better, and soon, I was walking again, but my feet do not line up straight. My left leg points to the left, and my right leg points a little to the right, but that’s OK. That’s just the way I learned to walk. I was just happy that I was able to walk at all.

There were also times as a kid that I wished that I was dead because I could not take the pain anymore. But I was sure glad that I was still alive because of