I was very fortunate in life
"When I first learned about my disease, I thought my life was over. For me it was a death sentence."
How did you learn about the disease?
I had frequent colds. My family doctor was becoming increasingly concerned and she decided to run blood tests that revealed very high white blood cell counts.
Your life has changed in that moment…
Indeed, a new chapter has begun. When I come to think about it now, I feel I've been very lucky in so many ways.
It is a strange thing to say for a patient suffering from chronic leukemia for the past 10 years...
It’s a blessing in disguise. I have always been very fortunate in life. Now, just as back then, I am taken care of; a guardian angel has been watching over me. Very importantly, I was lucky to meet top-notch doctors. An amazing doctor has been taking care of me from the very beginning of my disease. Also, I was qualified for a novel treatment and my therapy has been successful so far. Besides, my husband has been supportive the whole time. Still, I’d never believe it if you had told me a decade ago I would be saying this. When I first learned about my disease, I thought my life was over. For me it was a death sentence. I once even dreamt of my own funeral. I thought I would die soon. Not only was I terrified, I was ashamed of the diagnosis.
When you first learned you had leukemia you thought it was a death sentence. Do you still believe it?
No, not at all. I have been living with leukemia for so long. I’m not sure I use the right words, but my condition has become so normal for me. It has become a part of my everyday life and I sometimes don’t even think about it. I’d never expect I would feel so good. Even the treatment hasn't been so hard to tolerate. I started my chemotherapy soon after I was diagnosed: five sessions, five days a month. I went to the hospital, had my intravenous infusion, and then went back home. I was tired during the first days. But I didn't experience hair loss or vomiting during my chemo.
What scared you most: treatment or the disease itself?
The disease. This was because I had no side effects during my therapy. But then again, I had my guardian angel right behind me as it turned out the disease relapsed just in time, so to say. An opportunity has arrived to introduce a novel therapy here in Ciechanów. I was the first patient to receive it, and my doctor still reminds me of this. When I arrived at the hospital for my first intravenous infusion, I felt like a queen. All the doctors came to see me. The therapy was a bit more difficult to endure, but the results went back to normal after six sessions. I was ready to get on with my life. There wasn't anything to worry for several years. Two years ago my blood tests indicated the disease was getting worse again. But once again I was lucky.
This time I had genetic tests in addition to blood and bone marrow screening. My doctor told me I had a TP53 deletion that carried a poor prognosis. After all, this was good news. It turned out I had the chance to receive one more novel therapy. It was designed specifically for my type of leukemia. Again, my doctor didn't waste any time. She learned of a new therapy introduced in Warsaw and sent my papers to the Hematology Institute. She hoped I might qualify. I was invited for a series of tests in Warsaw and I waited for the final verdict. After several weeks, I received a positive decision. I was lucky again as I was told later I was the last or last but one patient to qualify to the program to receive the treatment.
How do you see your disease now?
This new treatment gave me hope. I realize that I can live with this condition. I have been living with it for 10 years now and I hope I have 10 or more years to live. Now I consider it a chronic condition. Some people have diabetes, others have asthma, I have chronic leukemia. And I want to tell these people that it’s not the end of the world. You can live with a disease like mine. My condition has become so normal for me. It has become a part of my everyday life and I sometimes don’t even think about it.”