Get to know Ana Maria living with and beyond her cancer experience– from her achievements in academia to her passion for dance, gaming, and spreading positivity. Discover the elements that define her, from her infectious smile to her love for magical tales and Minions.
What is your name? How old are you? Where are you from?
My name is Ana Maria Totovina. I’m 29 years old and I’m from Romania.
What’s your diagnosis?
Acute lymphoblastic leukemia.
How and when did you find out about your diagnosis?
I was diagnosed with acute lymphoblastic leukemia at the age of 16.
I had been dancing since I was 6 years old, and at some point, I began experiencing excruciating pain in the joints of my knees and ankles. Initially, I thought the pain was a result of dancing, but later, after more detailed tests, I found out that it was actually leukemia.
I remember the doctor coming into the ward and informing me and my mom that the diagnosis was indeed leukemia. He mentioned that I would undergo further specialized tests to determine the specific type of leukemia and the treatment required.
What has the cancer experience taught you?
There’s a movie named Collateral Beauty, where there’s a quote that I liked so much: “Just make sure you notice the collateral beauty”. I started to see the positive side in a negative situation, to be calmer and more rational in my decision, to help more and be more empathic with the people. It makes me stronger, but at the same time more emotional. I have a joke with my friends, every time when they receive their blood test, I tell them that I learned to read the numbers, because of my many blood tests during the treatment.
What helped you the most during the treatment process?
During the treatment I had a lot of support from my family. Especially my mom, who stayed by my side throughout the treatment. My dad and other family members were coming almost every day to visit me and bring me cooked food. Also, my classmates came to visit me all the time and told me about what happened at the high school. And there was also Little People, the special trained volunteer that visited me daily, and asked me if I needed any peer support, or just get out of the ward to draw, or craft, or read something. Little People gave me the chance to feel happy at a time when I was mostly sad, bored, and weak.
What has changed in your life since your cancer diagnosis?
Since my cancer diagnosis, I have had the luck to have not too many chances, or maybe this is what I feel now.
I remember, the first time I received the diagnosis, I had to learn from the hospital or home. By that time it was a big tragedy for me, but now it doesn’t look that bad. I managed to finish my study at the same time as my classmates and finished studies at the college that I desire.
Another change that happened was that I had to stop dancing. It was again a big tragedy for me, because I wanted to be a dancing teacher for children. But by that time, I started to volunteer in the hospital, and work with children, and I started to dance again, as a hobby. So, I learn to adapt my goals in life and still do what I like.
What would you like to accomplish within EU-CAYAS-NET?
Within the EU-CAYAS-NET I would like to make a change in my country, bring together more young survivors and advocate for our rights. I would like the position paper about the minimum standards of care for AYA people with lived experience to be considered a start of change for each country in Europe and abroad. I, as an AYA survivor, can say that during the treatment I felt that my place was not neither in the children ward, nor in the adult ward. It is not necessary to start with big changes, but small changes can be made, and I hope that our voices will be heard.
What are your achievements to date (formal or informal, education or hobby)?
I finished my master degree in management and leadership, but this is not exactly an achievement for me. The achievement is that during my college and master study I managed a charity project. With a team of 10 students, every year around holidays, we do fundraising for the children that are in the hospital for treatment and make packages and deliver them. Even though I finished the studies, this charity project is still running and managed by the actual students, and I have the opportunity to help them with the contact from the hospital.
Every year, I’m going to talk about the project for the new students, bring awareness about the situation in the hospital and advocate about what is right and good to do.
What do you do in your free time?
As I said before, I like to dance. So, this is what I do in my free time, 4 days/week, 3 hours/day. I take kizomba, bachata and sometimes salsa classes. I also like to participate in dancing festivals. I’m a bit of a gamer, so every time there’s a new game on the market, I like to try it and spend some time playing it. I like to go to the cinema, in the past I had a rule of going to see a movie every week. Now I’m still trying to find time to follow that rule, but it is hard when you have that many dance classes, not that I complain.
What is the best piece of advice you’ve ever received?
“Everyone thinks differently. Try not to understand everyone’s thoughts and try not to have high expectations from people.”
What makes you instantly light up?
Music always makes me light up. If I had a bad day, music would give me energy and happiness to finish it on a good vibe, always.
What defines you as a person?
I’m kind and always smiling. I’m childish sometimes, and I think I will always be. I like to help people, to meet new people, to learn new things, to be a good example for others. I’m a calm person, and it is hard to get me mad, or nervous. I don’t like spiders and snakes, and I love both cats and dogs. I’m a big fan of the Minions, and the magic word of Harry Potter. And I always say that I will visit Disneyland in California, because I’m in love with fairytales and happy endings.
What is one book you would definitely recommend to read? Or a movie to watch? Or a song to listen to?
Book would be: The Fault in Our Stars
Movie would be: Collateral Beauty
Song to listen: All of me – John Legend
Editor’s Note: Embark on a journey of strength and support! Join our thriving online cancer survivorship community on Discord. Connect with fellow survivors, share stories of triumph, and find comfort in a network that understands. Together, we are resilient. Click here to join and embrace a community of hope and healing. 🌟
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