Never lose hope
The 4th of August in 2001 was a beautiful summer Sunday. The sun was shining, the air temperature was 27 °C, the sea was as warm as a bath, at least 25 °C, as can happen from time to time on Paralepa beach. I had been on holiday for two weeks and was enjoying swimming. As an Aquarius, I am especially a water-lover. Everything should have been wonderful, but some nagging inner feeling said that it wasn’t so. Furthermore, I felt that something was very wrong.
This feeling started to swell when I came back from the beach, when my head started to ache. At home, I took a tablet, but it felt like the pain intensified. I lay down, but the headache became worse until I started to vomit. Then I was hit by chills. Outside, the sun shone but I crawled under a duvet. My mother, who was visiting me at the time, took my temperature and couldn’t believe her eyes: It was 35 point something. This completely frightened my mother, so she went to the emergency room of the local hospital to call me an ambulance.
The ambulance came immediately and took me to the hospital. There, the reason for the headache and vomiting became clear – my blood pressure, which was usually around 130, was over 200. Intravenous fluids were administered and my headache began to subside. When I woke up in the morning, I was in a good mood and feeling energetic. I rushed home as I had to travel to Scotland the next day. But I was not allowed to go home immediately. First, the nurse came and took a blood sample. I was waiting for the result, but the nurse said that I must wait a while longer as the doctor had ordered a repeat analysis.
At last, I saw the doctor who said that the number of white blood cells was abnormally high. He said that I should not worry too much, to go on my travels, but later I have to see a haematologist in Tallinn. The doctor made me swear that I would make an appointment.
I didn’t really let myself worry too much. I thought that I really had to travel, I couldn’t let this opportunity go, especially since there could be something wrong with me. But since I felt well again, I really didn’t believe that something could be wrong with me.
The journey was exciting; I still remember it. I came back and made an appointment with a haematologist, who confirmed the excess amount of white blood cells and referred me to the Department of Haematology at Tallinn Central Hospital (now called East Tallinn Central Hospital) in September. Several samples were taken, including bone marrow, which was a different procedure than I had expected because it was not taken from the spinal column or something but from somewhere below the throat. But enough of that.
The doctor came on the third day or thereabouts, sat on the edge of my bed and said, yes, the Philadelphia chromosome has been found, which means chronic myeloid leukaemia, which means that I have only three to five years to live.
I interrupted the doctor and said that I plan to live longer.
The doctor looked at me compassionately and continued to give instructions. I had to start injecting myself, including administer myself chemotherapy for ten days every month.
I came home and only then began to comprehend what was really happening. Is it possible that I have this awful disease? Only other people have such diseases. How did I have it now?
I worked all the time; this kept my thoughts elsewhere for a while, but I cannot deny that I became more and more nervous. I yelled at my colleagues, picked quarrels about every little thing and, conversely, everything made me cry. I remember that I visited my general practitioner and the cloakroom attendant said something, I don’t remember what, but it made me cry hysterically. I had hiccups from crying when I entered the doctor’s office, although there was no reason for this.
The doctor took a pile of case histories from a bottom shelf – back then they were all on paper – and started to explain to me, of course without naming any names, that this lady has been diagnosed with acute leukaemia, but she has lived with it for three years already. She manages by herself, only sometimes visiting a hospital for a blood transfusion. From the pile of case histories, the doctor found another comforting example for me. I calmed down. The doctor gave me a mild antidepressant which I took for a month. It helped.
The next week, I had a doctor’s appointment in Tallinn. As I waited for my turn, a lady sat next to me, I think she was over 70 years old. She started to talk to me. She said that her life is already over, but she feels sorry for younger people. Her disease had been diagnosed in 1992, i.e. 9 years ago. This made me think that 3-5 years is not so absolute, especially when taking into consideration the fact that medicine has developed at lightning speed during this time. 1992 was positively the Stone Age!
I asked my doctor why she was so resolute about the years ahead of me. Could it be said that there is a high probability that this is the case, but variation is possible? The doctor said that I was an intelligent person; there was no need to beat around the bush.
When I was back at home, I thought about my situation calmly. Maybe the antidepressant had helped, but I believe that it was mostly my inherent optimism. If I have been given only three years, there is no reason to waste it waiting for death on a sofa. On the contrary, action should be taken! If a thought or wish occurs, it must be executed immediately – tomorrow may be too late! That autumn, I wanted to go to Lapland. I contacted my favourite tourist agency and at Christmas time I visited Santa with my small nephew. My own son was already an adult and lived his own life.
And so life started to roll. Today, it is certain that if you live until a new drug or treatment option becomes available, you have a new chance. It was this way with me. At the end of 2006, it seemed that things were beginning to get worse. And then Marge Valdmann, with the support of doctors, made available a new, unprecedented medicinal product named Glivec. A drug which found the damaged cells and destroyed them. I didn’t know her personally but I will never forget her! My doctor said that Glivec couldn’t help everyone, especially those who had previously used other drugs, but it did help me.
My results became better and better and, at the moment, I feel that I am completely healthy.
Here, I want to talk about Juhan Paju, a writer from Haapsalu, who is not especially known right now, but he wrote a series of crime novels that were translated into Finnish. There was a moment where he and Friedebert Tuglas were the Estonian authors most translated into Finnish. He also had some kind of blood disease and he was told that he wouldn’t survive for more than five years, but he lived for 24 years. And those only five years of life were predicted in 1979, when progress in medicine was much more modest, but this didn’t mean anything.
What does it mean? Above all, it means that changes are possible, but also maybe that something depends on attitude. Juhan said that he has no time to die as his next novel is not yet complete. When he finally died in 2003, he had just finished his last novel Mudasegaja armuke (Mud Mixer’s Lover). He completed it in bed when he was no longer able to stand. He didn’t live to see it published. A couple of years before his death, he said that wanted to visit Capri very much but feels unwell. At last he decided to go. He commented on his decision: “Well, I feel unwell in Capri, but at least I can see the island I have wanted to see my whole life.” He stayed there for almost a month and also wrote a book there. “And I didn’t feel unwell there at all,” he said when he came back.
He was a good friend, there was a good deal to learn from him and I still miss him. I believe that even today people have a lot to learn from him.
For a long time, I told almost no-one about my disease, only my family and some close friends knew about it because I didn’t want to be looked at with pity. Now, I would have completely forgotten about my disease if I didn’t have to visit my doctor once every three months. I have thought a lot about the reason everything has gone so well. One thing is for sure, a guardian angel sits on my shoulder and is alert, otherwise my disease would not have been found so early. One reason for my ‘longevity’ is that the process was under control early on. But the other reasons? Did I do something good in my previous lives?
Who knows?
Ene