It’s been nearly ten years since Zhenya first fell ill. Zhenya has graduated with a degree in Journalism, joined the staff of the Podari Zhizn Foundation, and conducted all the interviews for our anniversary calendar. Today, we share her story—her victories, her recollections… and her tears.
At 15, at the end of Year 8, I was hospitalized at the Kaluga Oblast Hospital with kidneys inflammation. I was suffering from major edema of the legs, the eyes, the arms… After three weeks of treatment, I wasn’t getting any better—it was, of course, not a kidney issue at all, but oncology. Cancer often masks itself beneath the symptoms of other diseases.
I kept getting worse, and then one day my mum saw an enormous lymph node on my neck, which the doctors decided to remove at once. After surgery, I got sent to intensive care. The doctors understood by then that they had no way of treating me, and so my parents started to look urgently for somewhere in Moscow that could. That’s how, one ambulance ride later, I ended up at the Russian Children’s Clinical Hospital, and found myself in the oncohematology ward. And I wasn’t scared anymore. I felt much worse back in Kaluga—I was getting treatment, but nothing helped. I just really wanted to know what was wrong with me and how one was supposed to deal with it. That’s why I’m very grateful to the doctor who immediately talked to me about it, honestly, forthrightly and in detail.
I learned that my illness was called Hodgkin’s lymphoma, that it was very dangerous, and that I was about to go through four to six blocks of chemotherapy, as well as radiation therapy.
The test results came and they were bad: I turned out to be on the fourth stage of the disease, not the third. So I needed urgent hospitalization. But first they had to work on my kidneys that were in no shape to endure chemotherapy. For a few weeks, I just had to wait for the tests to come back better. Then one day the doctor in charge of me practically soared into the room, glowing with joy, saying that the indicators had finally gone up. That was when, filled with encouragement, we started chemotherapy.
My dad really helped me, because he told me from the start, “You just have to keep putting one foot in front of the other”, that the most important thing is to keep moving forwards, no matter how hard it is. It also helped that the ward, which I assumed would have to be quiet, peaceful and gloomy, was in reality filled with activity and life. Little bald kids raced through the corridors, older children chatted, reclining on the sofas… My ward-mate Madina, who’d been there for three months when I turned up, did her best to prepare me for everything. She explained what I’d experience when things got bad and when things were normal, and what I should fear. She told me a thousand stories, and made me laugh so much. I was very lucky to encounter so many people who knew more than I did. The first two months were grueling. I lost 20kg, going down to 38. I hardly walked and I spent a lot of time crying.
But one day I was leaving the ward in a wheelchair and realized that this was it—I’d finally reached my limit, the line that must not be crossed. I couldn’t get any weaker. I had to do something, to take up arms against the disease, to keep going with the treatment and to look out for the friends and loved ones who were watching all this.
At some point I began to walk, and go outside the ward, and I started to feel better. My test results began to improve, and they even started letting me spend time at home. It gave me new strength.
Everything was great, except that people’s reactions were unpredictable. I’d go down into the metro in a hat or headscarf, stick-thin, with a huge mask over my face and burning eyes… I must have looked like an alien. Some people stared in surprise, some had teary eyes, and some tried to help. There was a funny incident once where this woman caught up to us and offered something to my mum. She said she didn’t have anything, but she wanted to help us, so she gave us a rhinestone keychain for luck. It was very touching. But then, once a man came up and asked what I was being treated for—it wasn’t the plague, was it? That kind of mocking question hurt my mum more than it did me. I figured that people were simply scared, and protecting themselves in this incongruous fashion.
I generally tried to turn everything bad from when I was ill into something good. Or something remarkable, magical… One day I felt ill on the metro and they had to carry me on a stretcher. I imagined myself as an Oriental princess. And this is great, but it’s also normal! People generally tend to remember the good, whereas the bad gets smoothed over with time. I don’t remember—or don’t want to remember—the hospital as something terrible, as a place where children get treated or where they die. To me, it was a part of my life, and everything had a place in it: joy, sorrow, friendship, happy things, and misery. Just like ordinary life.
Nothing in a person’s life passes without leaving a trace, and that goes double for a severe, debilitating illness. I have tears in my voice now, but these aren’t tears of fear or self-pity. This is a sign that, so many years later, the illness still makes me mentally and emotionally aware of the fragility and preciousness of human life, of time spent with the people one loves. It’s not like I spend every day talking to the people I know about my feelings from eight years ago. But sometimes, even if not very often, I think about these things in order to remind myself what it was all for.
Treatment finished eight months later. I went through six blocks of chemotherapy, then radiotherapy, and on the 30th of December they sent me home. I was overjoyed! I knew that my dad and my sister had prepared a surprise for me. They’d redecorated my room, changing all the furniture and painting the walls bright green, a very lively color. But more than anything I was happy that we were all together again. It was easier for my mum, since I was never out of her sight, but my dad came to us on Fridays, and then left on Sundays and spent the week living on his own. He was very anxious. He lost weight just as I did, and he had heart problems, so my mum and I had an agreement not to tell him if I was feeling worse, to protect him, he’s so wonderful.
After half a year of home schooling, I passed the Primary State Exam, and then came back to school in 2010. I graduated with top grades. But I didn’t know how my classmates would react to my reappearance. When I was being treated at the Russian Children’s Clinical Hospital, they came to visit me, but I was too embarrassed to come out and see them—I was very thin and looked awful. They spent a little time with my mum and went away again. For a long time, I didn’t write to them and didn’t get in touch, because I thought it wouldn’t be entirely fair. I had no idea what could happen to me, and I tried to keep people at arm’s length so as not to hurt anyone if things went wrong. I tried to focus on the treatment, on myself. But when I returned home, they came to see me, all 30 of them! We had tea, and they told me about life at school, and didn’t ask me any questions, and it felt really nice. It seemed like any day now things would go back to normal, to how they used to be. Before the illness I had a very active school life. I performed at concerts, as a drummer for a rock band. I went snowboarding! And I really wanted it all back.
For the first year, I had fairly harsh restrictions on my diet and my lifestyle, but later it was my mum who tried to limit me, and I fought back every way I could. I told her that I wasn’t disabled, and I wasn’t a hospital patient, and I couldn’t spend my whole life as a prisoner of my diagnosis. I got my dad to side with me too. But of course, I don’t blame my mum for anything! I understand full well what she had to go through. When you’re sick yourself, it’s not so tough, but when someone close to you is sick and you don’t know what to do or how to help, that’s far harder and more terrifying.
I really wanted to go back to my ordinary life, but it didn’t all go my way. In hospital, you see things very differently. You develop values you didn’t have before. That’s why at first I got very irritated when my girlfriends started talking about some idiotic problems with school or boys. How could you even call something like that a problem? I felt like an adult woman at 16, grown wise with experience, and it seemed like the girlish troubles and sorrows they could go through were forever beyond me. Like I was a completely different kind of person who knew what really mattered in life and what wasn’t worth worrying about. But a year passed, and I started talking about the very same things! And everything went back to how it should be. I think it was a sign that I’d recovered from the illness psychologically. I started to be concerned with things other than my health, and I started to think about not just how to get better, but what I should wear to the party tomorrow.
Illness can turn even a little child into an adult. I developed a different system of values, and the most important things in it are life, friends and family. I think I must have become stronger. But I don’t divide my life into two parts—before and after the illness. Life goes on, and the illness was a trial given to me, for reasons I don’t know. Perhaps it prepared me for challenges that still lie ahead.
While I was studying at university, I kept in touch with the Foundation. When I was ill, the Foundation really helped us. They gathered half million rubles for my treatment! In addition to that, I’m very grateful to the volunteers who would come to see us. I participated in their photo project, and had a go at visiting hospitals. So it seemed entirely logical to ask whether it was possible to do some work for them. They invited me for a full-scale interview and immediately made it clear that I wouldn’t get any kind of free pass. I completed a four-month trial period and am very happy and very lucky to be able to work here. I really want all my activities, my work and my daily life to benefit the people around me, my friends and my loved ones.
Being needed, useful, important—these are my priorities. But just like any ordinary girl, I also want to get married and have children, and for everything to be wonderful!