I will die in a few weeks, but life is still beautiful
Ayşe Arman - ISTANBUL
I think of Ronan and Zeytin, their daughters. One of them is 5 and the other one is 9. In a couple of weeks, they will have no mother. Right now she is at home with them, but she’s dying.
Ann has terminal ovarian cancer. Despite surgery, chemotherapy and medicine, there is nothing more that can be done as it was diagnosed too late. It is the end of the road. The next step is death... And there are only a few days or weeks left...
Her doctor says: “There are two options: The first one is that we continue on with your treatment at hospital. However, I don’t think that it will be helpful. The second option is that you stay at home with your husband and your children. There, you can give your last breath and pass away in peace...” She chose the second option.
I have been speaking with a woman who knows that she is going to die very soon. I didn’t know if there is anything that can be called a “beautiful death,” but I have just spoken to a woman who said death could be beautiful...
A woman who is preparing to die... A woman who is trying to make life easier for people that she loves after she is gone... A woman who is facing death… A woman who is even telling her children that she is going to die... This brave woman is so young, 38 years old...
I’ve talked with her devoted husband, Özgür. These are people that I now know very well. Özgür is the son of our newspaper’s publications coordinator, Fikret Ercan, and Nesrin Ercan, the head of Mikader Association. And their wonderful bride Ann...
Oh Ann... She is extremely clever and talented, she speaks Turkish very well. They lived in Turkey for a while before they moved to the United States. We heard stories of Ronan and Zeytin from Fikret Ercan.
She had a marvelous job working at a school. Everything was going well for them. And then one day, Ann felt a lump in her belly...
This story hit me like a ton of bricks. We are not used to this, it is not a part of our culture. We wouldn’t want someone who has a few weeks to live to know they are going to die. People around her will know but she wouldn’t. We would think that it would for the best if she didn’t know. It is a theater for us, we would hide it.
But there it is; here is woman who says “I’ve lived an open life and I am going to die the same way!”
I cried while asking them questions. At the same time I was amazed by their bravery. There is a lot we can all learn from their story. It can be a novel, a film... which will be followed by a flood of tears.
I wish them strength and patience, I don’t know what else to say.
What exactly are you experiencing?
Ann: I am in the final stage of ovarian cancer. We’ve stopped the treatment. There is no use for it anymore. And I am dying...
It is so sad what you are saying! You are only 38 years old. You have two little children. How do you manage to be so strong?
Ann: Do I have a choice? Maybe I won’t be alive in a couple of weeks. Actually, there is no maybe: I just won’t be alive. But I am alive today. And life is still beautiful, and so are my kids. One of them is 5, the other one is 9. I am trying to make the best of my last days with my kids and my husband Özgür. I’ve lived beautifully and I am dying beautifully. Hiding your head in the sand is not the solution. You have to face it, even if it’s death...
When did you learn, how did they tell you?
Ann: That I was going to die? They told me a couple of weeks ago. My doctor is an expert on the subject. He said to me clearly: “Ann, you have to make a decision. You have two options. Either you will spend your last days at the hospital and have chemotherapy again. However, I don’t think it will be helpful. Or we will stop the treatment; you will go home to your family and die by their side...” So I decided that I wanted to die with my family by my side and spend my last days with them.
(2012)
Usually we tell the relatives when someone’s sick, but we don’t tell it to their patients. Wouldn’t it be easier not to know?
Ann: Never! It is a decision about my life and I have made that decision. Hiding something like that from me is like stealing my freedom away from me. In America, you tell the patient. I think that hiding it doesn’t help anyone. Yes, I am going to die. I have to face this and accept it. It is a fact. How can I ignore it? Even if I did, what good does it do?
Özgür: Here in America, cancer is seen as something that affects the whole family. When Ann was diagnosed, the hospital appointed us a therapist. The kids, Ann and I went to a therapist for two years. It helped us tremendously. Sometimes things happen where you need support. You can’t cope with it alone. Ann has lost 50 kilograms during this whole process. She hasn’t been able to eat anything since New Year’s Eve. She lives on fluids. She can only take 200 calories a day. She is melting down before our eyes. Of course, everyone reacts to it differently. The first thing you do in therapy is to find and discover yourself. When Ann was first diagnosed, I felt like I was going to jump off the third floor of a building. I feel so powerful that I said “I can protect my family from death! I can do anything for my wife!” But six months later, my body and my nervous system collapsed. I felt sick. After that, I realized that this disease affected us all. In therapy, they are trying to minimize these negative effects. For example, I was furious; I was being impatient and intolerant with my children. With the help of therapy, I’ve realized something: if something happens to Ann, I can’t just walk away and because of this, I am unconsciously angry at my kids. But of course it isn’t their fault that their mother is dying. On the contrary, we have to find the strength we need in each other. Believe me, if I didn’t get therapy, I would either be in a ridiculous relationship with another woman or I would be an alcoholic...
Even though we know that were mortal, we live as if we are never going to die. However, if someone told you: “You have this much time left!” What’s that like? What do people feel when they hear it?
Ann: Of course, it’s hard. It’s difficult to accept. However, I’ve always been an open person and I would want people to be open with me. I am a person who lives openly and I am dying openly. I wasn’t shocked. I didn’t experience a tantrum. I am not mourning. But I am sad. We are still so much in love with one another. I won’t be able to experience this love. I won’t be the mother of my children anymore (She cries). However, there is nothing else that I can do aside from accept it.
Özgür: Now that we have a few weeks left, we want to spend the time as well as possible. The reason why we are telling you this is to warn people about this disease known as the “silent killer.” It would be a great consolation for us if we could protect one’s family; if we could stop another family from going through what we are going through. Only then could we slap cancer.
Is there something called “dying beautifully?”
Ann: There is, it’s me.
(2014)
How about “preparing for death?”
Ann: There is that too. I’ve been preparing for it for a while. I went to a camp last autumn. With other women who also have ovarian cancer. We listened to each other and talked about our situation. Some of us were closer to death then others and now some of them are no longer alive. There I understood this: talking and thinking about death and preparing yourself for it is an important and necessary thing. It’s not that frightening. At first, I was afraid too, but later I got rid of that feeling and decided to spend my remaining days meaningfully. And the more I can take the burden off of my children and my husband’s shoulders, the better. By doing this you can make the lives of people that you love much easier.
Özgür: Now, I found out that after that camp, she found a lawyer, wrote a will and talked to her close friends. She made plans for before and after her death. Responsibilities were distributed to see what should be done logistically. She really made life easier for us.
Have you ever said “I will survive!”?
Ann: How could I not? I was thinking about it while making those preparations. But still I was taking precautions. It is similar to this: your house is not burning, but there could be a fire and we are taking out insurance in case of a fire. The reason why I faced everything is to live my last days with less anxiety.
Have you ever revolted?
Ann: I did a little bit. But even at the first diagnosis, it was obvious that we were facing a very difficult situation. My cancer was in its third stage, one away from the last stage. The chance of living for five years with this type of cancer is 30 percent. So the situation was a bit hopeless.
Özgür: The weird thing is this: The average age of someone being diagnosed with this disease is 62. But Ann is 38. At such a young age, a tumor this serious is really one in a million.
Wouldn’t someone cry out and say “Why me!”?
Ann: That I never did! I had such a wonderful life! I’ve found the man I loved when I was 19. We had a great love for one another. We had beautiful kids. We are a loving family. I had a very good career. I’ve always been a lucky person. While all of this was happening to me, I never said “why me?” Then, how can I say it when something bad happens. It sounded stupid. I say “It’s not fair,” but not for myself, but for my children, because it is a huge trauma and they are so young. But there is nothing to do. This is their reality.
Did you tell them?
Özgür: Yes, we took the children to a hotel by the ocean last week. And we told them: “Your mother won’t continue having chemotherapy because it will damage her even more, now she will be at home with you...”
Ann: We didn’t lie. I looked at them in the eye and said, “I am going to die.” Of course, they don’t want me to die, neither do I, but in our hearts we are always together. They asked “When will you die?” I said “I don’t know.” I didn’t say anything about timing. “I am alive now. Forget about tomorrow. Let’s live life now to the fullest.” We all went for a swim in the ocean.
Özgür: Ann is a great mother. When she was working at kindergarten school, she was so attached to those little children. And I was a man who wanted to be a good father. Apart from being in love, we were two people who really wanted to have kids. It was as if the universe brought us together to make Ronan and Zeytin. There is a documentary that I watched years ago. Elephants in Africa were walking hundreds of miles to find water. Their only chance of surviving was to finish their journey. But one of the baby elephants hurt its foot. Instead of going on without that elephant, the whole herd starts to walk slowly. That huge herd risked their lives for that baby elephant. Our children are very important to both of us. I will continue with this journey even if it’s without Ann and I will make the baby elephant reach the water.
Your friends...
Özgür: Everyone is extremely supportive. There is a website in America, people become members and create support groups. Around 200 of our friends came to support us. They are giving an unbelievable amount of support. For example, we were miserable during Christmas, as Ann was having surgery. They said, “We will prepare Christmas for your kids!” And a trunk full of toys arrived. After that they started sending food. One of them cooks on Tuesdays while the other cooks on Thursdays. You don’t have to host a relative at home like you do in Turkey. They leave the food at the door and then leave. Someone comes and says, “Let me mow the lawn,” someone else says, “Your dog’s hair has grown, let me cut it.” They take the children for a walk. They are really incredible!
Do you do anything to make your children remember you more? Things such as making boxes or writing letters...
Ann: Yes, I made two huge wooden boxes. I’ve separated a lot things saying “These are for Zeytin, these are for Ronan.” I wrote letters too. Lately, when I feel well, I shoot videos on my phone. I sang the songs that we love and sing together. And I asked two of my friends who lost their mother very young: “What would you want your mother to leave for you?” They’ve told me that they wanted to hear stories that they can only hear from their mother about their birth and childhood. So I’ve made a list. I am shooting some films. They will watch them many years later. It might sound strange but I give answers to questions, such as what “would have I asked my mother if she was alive” about life and sexuality. I want to do everything. I am in a hurry!
Özgür: Ann has a collection of scarfs and foulards. Now two artists are making special duvets from them for both Ronan and Zeytin. Their mother will always be by their side on their bed and she will always hug them.
Do you think about “What will Özgür do with the kids after me?”
Ann: No, I have so much confidence in him. He will handle it. He will make the baby elephants reach the water.
Özgür: After Ann, half of me will become Ann. I will take her in me. In me, the children will experience both me and their mother.
How did this disease progress? When did you realize?
Ann: There was a lump in my belly. And I was having constipation. I don’t normally have that. I talked to my doctor. He looked, but he didn’t take it too seriously. Ultrasounds, X-Rays, blood tests, everything seemed normal. I was still saying “I know my body, something abnormal is happening!” I then changed my doctor. However, the disease is so sneaky that there are almost no symptoms and it is very rare at my age. Probably because of that the doctors didn’t think about the possibility of contracting ovarian cancer. Meanwhile, months went by. But I still had the same problems. Unfortunately, only 18 percent of patients are diagnosed early enough. If you are a bit overweight, it gets even harder to diagnose. By the end of the disease, I found the right doctor and had surgery. We did everything you could think of, including chemotherapy. I even used medicines six months before they came out. However, it was too late.
We thought that doctors didn’t neglect patients in America. As it turns out, it isn’t true…
Özgür: In medicine, possibilities are considered all around the world. The chances of someone Ann’s age having this disease is very low, therefore the doctors didn’t think it was possible that she could contract those types of diseases. Despite Ann continuously saying “There is something wrong with this.”
Ann: There is a message that I want give to people. The only solution is early diagnosis. Know your body well and take changes seriously. I am a person who regularly had pap smear tests. Apparently, it’s not enough. Vaginal ultrasonography is necessary. Things like swelling, indigestion, constipation, weight loss, gaining weight seems very ordinary, but please take them seriously.
How did you guys meet?
Özgür: At university. It was my first year. I was friends with her roommate. I fell in love with her at first sight. But I only knew her name and there was no Facebook back then. After we became friends and after a short while, we started dating. We’ve been together since 1992. We must have been separated for at most 18 hours. We grew up together.
Does it feel as if a love is also ending with a life ending?
Özgür: No. It was as if we had this love before we even met, before we were born in these bodies. We felt as if we’ve always been together and always waited for each other, as though it is beyond us. Our souls were always together. Why wouldn’t they come together again? Why should death be an end? Maybe this is a defense mechanism or a consolation, but we believe in it.
Ann: Love doesn’t end; we will be reunited in different forms sometime in the future. Maybe as a flower or a butterfly. One way or another, we will be each other’s again.
Özgür: Now I think of life as a day. We live it to the fullest until that day is over. At any moment, I can say, “Kids, your mother is sick, I will take her to bed and come back” and she might die. Of course, I will miss her and feel her absence. But I am so grateful for the 23 years that we’ve spent together. Ann is my lottery. A lot of absurd things happened to me and she was always by my side. And from this love, two wonderful people were born. We will always make her live. I know that Ann will always be in the eyes of our children.
During chemotherapy, Ann told her husband to cut her hair in punk style to entertain her kids.