Illness Is An Adventure: How I Live After Removing A Brain Tumor

A life 2023

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Illness Is An Adventure: How I Live After Removing A Brain Tumor
Illness Is An Adventure: How I Live After Removing A Brain Tumor

Video: Illness Is An Adventure: How I Live After Removing A Brain Tumor

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Video: Shane rebuilds life after brain tumour 2023, January
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Astrocytoma is a brain tumor from cells called "astrocytes". Astrocytomas can be of varying degrees of malignancy: in children they are often benign, in adults they can take an aggressive form and grow rapidly. Polina Bakaryuk has the first case: a neoplasm was found in the girl's optic tract when she was six years old, and over time it was almost completely removed. Now a resident of Taganrog is fifteen: she has difficulty moving the right half of her body and has impaired cognitive functions of the brain, but she believes that this simply makes her special. Polina told us about rehabilitation, homeschooling, friendship, and the importance of a stable condition.

Text: Ira Kuzmicheva

Style: Daria Chernysheva

Photos: Lyuba Kozorezova

Makeup: Sofia Petrova

Hand on vacation

I was an ordinary child, went to kindergarten. When I turned six, my mother noticed that I was acting strange. For example, I only use my left hand and do not give my right: my mother wants to take me by her, and I say that my hand is on vacation. My mother also told me how I fell asleep on a bench in the park for no reason at all, and that I was sick all the time. The right side of the body weakened, the arm hung down, the leg began to drag.

We went to a neurologist. She immediately realized by the hanging hand that I had a brain tumor. After MRI, the diagnosis was made - a neoplasm of the brain. The type was determined after the operation (for this, a histological examination is carried out, that is, the affected tissues are studied under a microscope. Polina has a piloid, or pilocytic, astrocytoma of the left optic tract - a benign formation. Approx. ed.). The doctors said that the tumor had grown greatly due to the heat, and that summer we went to the beach almost every day. In Taganrog, no one wanted to treat her, we basically have no neurosurgeons. The operation was undertaken by a cool doctor from Moscow, he was then the director of Burdenko (National Medical Research Center for Neurosurgery named after academician N.N.Burdenko. - Approx. ed.). In October, my parents and I went to Moscow for an operation.

I remember a cool train. I love to ride trains. This was the only time when I went somewhere with my dad and mom, and not with each separately, as usual. Before leaving, family friends gave me a teddy bear - I named it Marmalade. I was even allowed to leave him in the recovery room. He is my talisman, he still travels with me in a backpack. So that I would not be afraid to be left without mom, dad said that he was a wizard and turned mom into a fluff. I believed that she was sitting on my leg during the operation, and therefore I was a fine fellow. She behaved calmly in the intensive care unit, did not scream, did whatever was asked. The doctors said: "We would all like such patients."

So that I would not be afraid to be left without mom, dad said that he was a wizard and turned mom into a fluff. I believed that she was sitting with me

on the leg during the operation, and therefore was well done

After that, parts of the tumor remained in the brain, so a few years later they operated on for the second time. The second operation was more complicated and time consuming. I got out of anesthesia for three days. When the doctor said that I was awake, my mother ran to the store and bought a Moxie Avery doll. I opened my eyes, and here the doll is delight! But immediately fell asleep again. And so for three days - groundhog day.

What they could not remove was irradiated (two months after the operation, Polina was given a course of radiation therapy. Approx. ed.). What is left inside does not need to be removed. Doctors say that now I have a "stable condition without negative dynamics." It sounds like a lovely melody.

For me, illness is an adventure. And indeed not a disease. I love hospitals: doctors are tall and handsome, they walk in white coats. I was treated in a large hospital, such a tall whopper, a very beautiful hall.I like the atmosphere, only the smell of alcohol is a little scary. As a child, I was afraid of injections in the ass, but I was often given them.

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I am now in a creative crisis

I have a disturbed vegetative system (the autonomic nervous system controls unconscious processes in the human body: heartbeat, digestion, sweating, etc. - Approx. ed.). I sweat a lot, it's very, very unpleasant. Orthopedic shoes need to be worn in socks, and by the end of the day they are completely wet. All my life I will have wet palms and everything. Until I was thirteen, my mother washed me, she was afraid that I would fall. Just imagine, I'm a teenager, and my mom washes me. It's a shame. But I'm great, I started to wash myself when my parents put in anti-slip rugs and made a special seat.

The left side of the brain is responsible for the right side of the body, so my right eye cannot see and can sometimes roll sideways. The hand almost does not move, the hip joint is distorted. I walk on my own - my mother persuades me to walk with a cane to make it safer, but it seems to me that with a cane I will look like an old woman. I wear orthopedic shoes: the sole of my right shoe is two centimeters higher than the left. In a few years, it will be possible to undergo surgery and heal the leg. I'm happy about it. Recently, an orthopedist said that perhaps after twenty-five years it will be possible to correct the skewed joint.

After the first operation my right arm and leg began to move better, but after the second I learned to walk again, there were problems with speech, my face twisted (Polina's doctors say that the first time the situation changed, because the tumor stopped compressing the motor centers of the brain. Approx. ed.). But we do not complain about the doctors, on the contrary, they did everything they could. The brain is unpredictable. At first it was very offensive, but then it didn't matter. I retrained from right-handed to left-handed, but because of this, I write very badly. No one can read my handwriting, not even myself.

I walk on my own - my mother persuades me to walk with a cane to make it safer, but it seems to me that with a cane I will look like an old woman

I am 155 centimeters and will not grow any more - my growth zones are closed (cartilaginous areas of bones in which growth occurs; they usually mineralize after puberty, when growth stops - Approx. ed.). Because of radiation therapy, the brain areas that are responsible for puberty were activated too early, and I am twenty kilograms overweight. You need a diet and physical activity, there is an ellipse simulator at home. Today is a day off. Some have Thursday and some have a day off. I have to do exercise therapy exercises, but I am not doing anything. I am now in a creative crisis. Because recently I spent two days with a friend, my regime was violated, and I cannot restore it in any way.

In 2013, I felt the urge to break my right arm. If I broke the left one, I would eat the right one alive - so I hate it. I broke it like this: I was happy with the roll. A regular roll with a filling, I don’t know which one, but delicious. I jumped, my legs tangled with joy, I fell. The wrist was broken, and now the wrist is bent down. I have always felt my hand: if it doesn’t work, it doesn’t mean that I don’t feel it. I want her to get stronger. She will lift the bottle of water, but with difficulty - it is unpleasant for me to do this. If I take objects with my right hand, then only with two fingers - index and middle - and I cannot twirl the object. And the hand does not know how to do little things, for example, to tie laces, so all my shoes are with Velcro. And sometimes, I put something in my hand, and then she does not let go, if she is very tense. It is also difficult for me to put my hands behind my head, although I dress and undress myself. There is a signal from the head, but it is lost along the way.

I don't really like to read, although I should

I never went to school, I was left homeschooled. But it was still difficult, I missed a lot because of the treatment. At first, I didn't even really study, I was glad that I was alive. Mom did homework, and I copied. My parents thought it was hard for me to study after the operation.Yes, and the teachers who came from school did not particularly try, rushed, put three at once: I did not understand - and okay.

When I was in the fourth grade, my mother complained to a neurologist in Burdenko that it was hard for me to study. After the first test, it became clear what the problem was. I do not hear some of the sounds, my brain cannot imagine a picture when I read a text - I just put letters into words and that's it (Polina's cognitive functions of the brain, such as memory, attention, speed of information processing, spatial-coordinating imagination, are reduced. - Approx. ed.). A neuropsychologist began to study with me. Classes with him are like a game: here is a picture, remember, turn it over, tell what is shown, then another one. I also go to the Russian Field rehabilitation center for children with cancer (for such patients, the center is equipped with special neuro-trainers. Polina is also included in the neurocorrection program, which implies special physical activity and graphomotor trainings. - Approx. ed.). There, my parents and I immediately noticed: the more the cognitive functions of the brain are restored, the easier it is to move the hand. The more you move your hand, the easier it is to learn.

Until the sixth grade, I had home education. I also studied drawing, Russian, mathematics and a psychologist via Skype with teachers from the boarding school. Mom says that then a decree of the Ministry of Health was issued, in which home education was canceled for many - people like me were sent to a general school. It was impossible for me. I withstood half an hour of classes and got tired, scared of loud noises. Then my mother forced to collect a commission, proved that the school was not equipped with left-hand handrails, a special toilet, showed a bunch of extracts from doctors, scared that if someone pushed me, I could hit my head, and asked to transfer me completely to distance learning. And everything worked out. I was given a computer, webcam, printer, scanner, digital camera, microscope, everything for practicing robotics. When I go to rehab, I take my laptop with me and study on the spot. Such a regime is already within my power.

I don't understand geometry at all. I can't imagine a picture: a triangle or a circle, and a square is inscribed in it. And maybe that's why mom does the homework for me or explains three hundred times

Now I study according to a regular program, just at home and on a computer. Classes begin at eight thirty and end at lunchtime. Two more girls from Rostov study remotely with me, and the algebra and geometry teacher lives in Novoshakhtinsk. The head from sitting at the computer does not hurt, probably because I like it. And homeschooling is pleasant. You don't need to get dressed and stomp somewhere every morning.

I read syllables and write words in a row, without punctuation marks - I do not catch intonation. In March, we studied with a speech therapist, learned to hear commas, distinguish voiced and deaf sounds, for example, "b" and "p". Until there is no result, it takes time. I can still read some story, especially interesting, about myself. In general, I do not particularly like reading, although I must. But I don’t want to. I tried audiobooks, but I don't want to either. I don’t understand a teacher if she speaks quickly, and I don’t understand anything in textbooks, especially in history.

It is difficult for me to understand which school subjects I like and which do not, because my mother does almost everything for me. She helps me from the first grade - it dragged on until the eighth, I just graduated. I can solve the quadratic equation, and the rest - sorry, I'll go. I don't understand geometry at all. I can't imagine a picture: a triangle or a circle, and a square is inscribed in it. And maybe that's why my mother does the lessons for me or explains three hundred times, draws.

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Rehabilitation

I get up at seven in the morning, accompany my mother to work and return home. At the same time I learn to cross the road. I am confused, who is green, who is red, which light should go. Therefore, most often I look at what others are doing.

I have breakfast at eight. At nine I train on the ellipse trainer.If it is a bath day, then while I am practicing on an ellipse, a bath is being typed. I worked, bought. Ten thirty - eleven snack. At twelve thirty I do exercise therapy, I don't want to, but I have to. You have to do an hour, and I do all the exercises in half an hour. Then lunch. Then I rest and enjoy life - I sit at the computer. I watch the series "Team B", "Phineas and Ferb", "The Last of the Magikyan", occasionally watch "My Game", I like it. At four o'clock I have an afternoon snack, at six-thirty dinner. At ten I start going to bed. The alarm clock tells me everything, because there were situations when I forgot to eat. In general, I like to organize everything according to the schedule. Probably, the effect of trips to rehabilitation centers, where every day they give out a schedule of procedures and everywhere you have to be in time.

Once a year we go to Burdenko to see a radiologist to monitor what is going on in my head. I also undergo rehabilitation in two medical centers in turn. In the city of Chekhov, near Moscow, there is a treatment and rehabilitation scientific center "Russian Field", I call it a sanatorium (State Rehabilitation Center for Children with Cancer. Polina is given treatment twice a year for two weeks. - Ed.). Second place - the International Institute of Psychosomatic Health in Moscow, treatment there is paid for by the Konstantin Khabensky Charitable Foundation. They do exercise therapy with me there, restore my spatial-coordinating imagination. And in April on

Biofeedback therapy (biofeedback. - Approx. ed.) were engaged in the restoration of the vegetative system. Finally I felt dry hands - this is delight. The right hand also began to turn, palm up, and stability appeared in the legs.

I dreamed of being special

I have a problem with my friends. I want to be friends, and I don't know how - I quickly get tired of communication. You need to spend a lot of energy on friends, to entertain them. In addition, I dropped out of communication with other children at the age of six. Yes, and in the kindergarten she loved to play herself, maybe it's just such a character. Now I have two girlfriends. Recently I walked with one of them and realized that the evening had gone down the drain. I was bored, we are on different waves. But when everything is going well, it's a lot of fun.

My best friend Ulyana will soon be eleven years old. Due to the fact that I do not know my classmates and almost did not communicate and do not communicate with peers, I cannot stand them. I have never really seen them, but from cartoons I can assume that they think about one thing, and I - about something completely different. For example, they follow fashion, trends, but I don't. I like that I am different from my peers and do not strive to be like them. I also have a second friend, Ksyusha. For some reason, her parents do not allow her to come to my house, swim in my pool. And they don’t let me in, as if I’m contagious. It seems to me that if I went to school, half of the class would be wary of me. I came across unpleasant comments a couple of times, no more. They didn't even hurt me. I remember only one case when I was called "one-armed". I replied that I do not respond to name-calling. Otherwise, everyone treats me well. More often they ask if I can feel my hand.

Two years ago I took part in the Winners' Games (international sports competitions for children and adolescents who have overcome cancer; the games are organized by the Grant Life Foundation. Approx. ed.). She won gold medals in swimming and walking with support. In table tennis, she took fourth place, losing to a girl from Turkey. It was a shame, I trained all year, went to classes. But in general it was cool. I played Lego Friends for several years. Parents bought different sets, and from them I built a village with a magical forest. Thirteen girls and two boys live in the village. Someone works in a restaurant, someone in a store, there is an airplane and an airport, there is a mobile two-story house. Life is in full swing there.

Some doctors scold us - that, they say, you do not work well with your hand, others, on the contrary, praise us - your hand is alive, it moves.Medicine does not stand still, everything changes. I do what I can and come what may

I cannot drink alcohol, sunbathe, baths, steam rooms, and physiotherapy with warming up are generally prohibited. It is advisable not to fly an airplane, you can not ride a horse or jump on a trampoline: shaking can move a small remnant of the tumor in the head, and removing it completely is difficult and dangerous. I’m better off not doing this. The neurologist also said that I shouldn't go to parties. I do not mind, loud sounds are unpleasant to me, I do not like to be in a party, I feel uncomfortable.

Despite all this, there is a whole list of cool pluses in my situation. Firstly, it is additional money for parents. Secondly, I don't go to school. Third, new acquaintances. There is such a boy Tyoma. If not for hemiparesis (weakening of the muscles of only one half of the body as a result of brain damage. - Approx. ed.), I would never have met him. So hurray! We have similar situations, only he slows down and grumbles like a grandfather. Finally, I got a lot of all kinds of emotions, visited new places, for example, the city of Chekhov.

Ulyana has an older brother, Yegor. We were friends with him when I was still little. Now he is very tall, and I am very short, I look at him and think: "How beautiful you are." This is the only boy that interests me. I like him now, but it won't matter in the future. With Yegor we have very few chances, he lives in a different world, does not understand what it is like to be with one hand. And I need a person like Tyoma, because he can understand me.

Now I have no hobbies or hobbies that can hint at my future profession. I will make a good psychologist, or maybe a politician. I rush from one extreme to another, I hope that by the eleventh grade I will decide who to be - it is advisable to meet another guy by that time. I am praised, they say, I am stubborn, strong character. Mom and Dad know that when I need to, I will do everything. I am not forced or controlled - for this I love my parents. Here Ulyana washes the stove and dishes every day. I can't imagine - not life, but a nightmare.

Mom says that doctors have optimistic forecasts. The body is young, it regenerates itself. The more stable I am, the better. At the last consultation, the radiologist was very pleased with the state of the brain. Once a neurologist from MIPZ said a phrase that became our motto: “You don't know what it would be like if you did nothing. Do not stop. Even after ten years after the operation, the body can recover. " Some doctors scold us - that, they say, you do not work well with your hand, others, on the contrary, praise us - your hand is alive, it moves. Medicine does not stand still, everything changes. I do what I can, and come what may.

As a child, I dreamed of becoming special, and my dream came true. At first I did not understand why I was limping, why my arm was crooked. Over time, I realized that I have a disability. I was not upset, but, on the contrary, I was even delighted: I am not like everyone else.

We are grateful to the Konstantin Khabensky Foundation for help in organizing the interview.

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