Jose Gutierrez

Jose Gutierrez is a hepatocellular carcinoma survivor.

They diagnosed me in August of 1979. The type of cancer that I had is called hepatocellular carcinoma. It was an accident when they diagnosed me. A few days before I arrived at the Children’s Hospital Los Angeles, my mom was taking me to see various doctors in the community. I had a stomach ache and nobody could calculate what it was that I had. We all thought it was something that would go away, that it wasn’t very serious and it would just take time and would pass. My mom didn’t accept that. She kept trying to find out what the problem was. One day we went to see a doctor. The doctor was from another country. He was seeing patients. He was examining my stomach and told my mom, “I don’t know what that child has but it’s something very serious and what I want you to do right now is to go to the Children’s Hospital in Los Angeles and arrive at the emergency room and have them look at the boy.” That same afternoon we went to the emergency room at the Los Angeles hospital. There were a lot of people and I didn’t know what it was that was happening. I remember being in the lobby and later being in the room where they were examining me. What I mostly remember is that doctor after doctor came in. My mom and my dad didn’t understand English very well and I, being only 6 years old, understood that they were going to hospitalize me. I thought that they were going to do surgery and that’s when I began to cry and cry and cry. I was very scared. The fear came that what I have is very serious. They hospitalized me and I was in the hospital for 2 or 3 weeks. They did a biopsy to confirm what it was that I had and they found 7 tumors on my liver.

The treatment was chemotherapy. There were 3 different kinds of chemotherapy but I don’t remember very well which they were. I had already gone through more or less 1 year of being in treatment. After that some time passed and another treatment followed. At the end of the chemotherapy treatments the doctors thought that there was still a tumor that the chemotherapy wasn’t affecting. They wanted to do surgery because the chemotherapy wasn’t having an effect. They wanted to do surgery to take out about 30% of my liver where the tumor was. It was a very big surgery. For my father it was very emotional that I would have surgery. They took me to various healers and various churches and to talk with various priests. The day before the surgery we went to a mass. All the kids were there because of health problems and I remember that he told my parents not to worry, that everything was going to come out alright and that the doctors weren’t going to open anything. The following day they took me to the hospital and we went ahead with the surgery. I remember being there waiting in the room before the surgery and just waiting. When I came out of everything, some hours later, I had tubes all over the place. I was thinking that they had cut out 30% of my liver. It turned out that when they went in to do the surgery they didn’t see anything and that what I had was a stain that was left by the tumors. So they didn’t have to do anything. They just went in and looked around and confirmed that there was nothing remaining there. I think that, my dad also thinks that, they shouldn’t have done that surgery, that it was an error. But that is what the doctors had to do to confirm and to be sure that there wasn’t anything.

I’ve had effects as a result of the treatment. Recently I came to the Children’s Hospital to have a complete physical. That consultation opened my eyes to what was happening to me being an adult now. Three years ago they diagnosed me with a heart condition, which is called cardiomyopathy, and the condition weakens the heart. It is not very serious but they gave me heart medicine and told me that I would lose weight. After that I began on my own trying to find proof to confirm whether all this was a result of the chemotherapy. When I came to the clinic in the hospital they told me that’s one thing that can result from the kind of chemotherapy that I had. They also want me to begin to give them the results so they can follow it, too. What has happened to me is something really big, and it’s completely changed how I feel. I’ve lost like 40 pounds but I have another 50 pounds to lose. That is what I have to do to be able to improve the condition that I have and to not continue weakening my heart with all the weight that one carries around.

Apart from that, I feel a little depressed sometimes. It turns out that some hormone levels also are affected by chemotherapy. There have been times when I start to feel a little depressed, a little alone, and I imagine that they’re also the results of the chemotherapy and the treatment. I start to think and what helps me when I get like that. Thinking about everything I suffered when I was little, and later on my depression, all went away, because thank God that I’m here and I have my health and that helps me a lot.

When I feel a little depressed what’s always helped me a lot is to reflect on what has happened to me. When I was younger it was a little harder because it was very emotional for me. At times I didn’t want to remember everything that had happened and my mom’s emotions and all that she suffered. Those memories were a little difficult when I was younger. Now, as an adult, I take more time to think about that and to talk about the experience that I had and it has helped me a lot. It’s helped me in that when I tell a story to someone who is suffering with something, whatever it is, it doesn’t matter if it is cancer or something else, it gives them a feeling of hope and when I can give a little hope I feel good. I feel good about what I had.

In sharing the story, it gives me hope. This story may be able to help someone and give them hope, too, so that they keep going and trying to go forward and stay positive and see that light in the tunnel for them. One day they, too, will be chatting and telling their story to other people.

Thank God that I didn’t have cancer where my image would change much. Personally, I changed a lot. Physically, I still have all my hair and the only thing I have is the scar from the surgery on my stomach. Other than that, I don’t have anything that puts a negative image in my head. When I stop to look at all my companions who have also survived cancer, there are some of them that you can tell had cancer, there are some who you can’t tell they had cancer, but thank God a lot of people don’t have any idea that I suffered from cancer. When I tell them they are surprised. They say, “How can it be that a person of your size? How can it be that you’ve had such an ugly cancer?”

One of the things that affected me very negatively was to lose my hair. Going completely bald, just seeing that your hair is falling out, feels really ugly. Our family would get together in the house of an aunt or uncle and I remember we were eating dinner or having lunch together and we sat down to eat and sometimes I felt that my plate was full of hair. That’s what hurt me the most. I think that the experience of not having my hair was what hurt me the most. Besides the fact that I saw my hair falling out, I lost a year of school for all the treatment. I returned to the school in a different class. I no longer had the same friends that I had when they diagnosed me. I returned to a class with completely new kids, with kids that didn’t know what was happening with my health and my body and I remember that a kid that loved to take off my hat. I didn’t want to go to school because it made me afraid that other people would see me bald, without hair and this kid, it seemed that he went to school just to take my hat off my head. That was one hard thing for me. Kids, their intentions are innocent, but they affect you very badly if they are negative. It’s something that I remember very well and I didn’t like it. I didn’t want to go to school for that reason.

When time passed they began to understand what was going on with me and that’s what cancer was. Once they understood they began to realize that what they were doing wasn’t something very nice. Then things weren’t the same. It was easier for me to go to school and to get along with the kids. But a lot of times I’d stay by myself or I’d spend time with my cousins. I didn’t hang out much with other kids at that age. For many years in school I was always very independent and alone. Now I like to share life with lots of people and be social. But I think that was the biggest emotion I felt - to see my mom suffering was first, and after that losing my hair and all the jokes the kids made at my expense in school.

One of the most difficult things, besides the cancer, was communication. My parents are from Mexico and immigrated here. They don’t know the language, especially 29 years ago. They had just arrived in our country, but the most important thing for them was work and then the family, but never English. One of the most difficult things was the communication between them and the doctors. One of the things that my mom talked about was that she doesn’t understand how a child of 6 years could interpret between the doctors and them. She says I matured a lot. I developed very rapidly because everything that was going on around me I had to understand and then explain to them the best I could. A lot of things I didn’t understand or I didn’t even know what they were. I was interpreting between them and the doctors and it was very difficult. I think that out of that have come a lot of programs in the hospital for people who can’t communicate very well in the English language. It was very hard, very difficult for everyone. I didn’t even understand it in English, and then to have to explain it in another language - it was something very strange.

My family suffered a lot. Because my mom was so involved with my treatment and my health and my dad working, there wasn’t a lot of time for my brother. He became very bothered for a long time. He was always getting into things he shouldn’t have, not serious things or dangerous, but he was more mischievous.

All of that was a more than 10-year experience, and in those 10 years that attention they gave more to me, that’s what he saw and the attention they gave him wasn’t enough for him. For a long time he did the things he had to do to attract attention, whether it was negative or positive, and a lot of times it was negative. He got very mischievous but now he is my best friend. Every weekend I’m with him or with his family and I spend my time with them. I think that he was the only one who suffered a lot because he stayed apart from everything that was happening. He didn’t understand the things that were going on and nobody had time to try and explain it to him. He spent a lot of time with my grandmother. That connection that he had with her was very strong and really great. My grandmother was the person who always took care of him and they were always very close with each other. But today we’re best friends.

Thank God we had insurance. My dad worked in a company that offered them good insurance. Besides the insurance, the program that helped us a lot was CCS. What the insurance didn’t cover, the other program covered it. Besides those two things, we never had any big problem with insurance. Thanks to God and how great that my dad had the opportunity to work in a company where they could offer such good insurance.

One of the things that I try to do is to spend time with other people, other children and young adults who have had cancer, who have suffered some kind of cancer. One of the things that I do is to be part of a group at the Children’s Hospital in Los Angeles. That group connects me with different people from different cultures and it gives me an opportunity to come and give them a story. I imagine that hearing the story and seeing me, now an adult, it’s going to give them that hope that sometimes you need. It gives me a lot of pleasure to tell them that story and to be able to give them that hope. I like to connect with that group a lot. Sometimes I think that it’s that group that is helping me to stay positive on the days I’m depressed or that I feel bad. This is the group that always straightens me out and makes me feel good. Of all the bad that I do that group is the one that I seek out to do what I think is good. It’s a balance.

The advice that I can give you would be to be positive, live together with your family, because your family and the people that surround you are going to be one of the most important things that you will think about. Those are the people that are going to help you survive. They are the ones who are going to push you until you don’t want to hear them. They’re going to keep on and keep on and that is one thing that you will be thankful for. Family is what’s most important. So have that in your head that the people that surround you are what’s going to help you in this fight. Always be positive, share life with other people who are suffering from the same thing, don’t be afraid to talk, don’t be afraid to make new friendships, don’t feel bad about trying to find help apart from the support groups. Help from other people that suffer from the same thing is something really great. I was very independent for a long time. I didn’t want to associate with anyone from the hospital. I felt it was a negative thing and I didn’t want to be part of that group or a group, whatever group it might be. As I matured and as an adult it’s very important that you always have to share life with people and with other persons who are suffering from the same thing. There are so many positive things that you can absorb and it results in positive thinking. One thing you have to keep having is positive ideas and positive thoughts so that you keep fighting and never lose hope and believe that everything is going to keep going well and that it’s going to come out alright.

My name is José Gutiérrez and I am a cancer survivor