Eva's Story

My disease history

I have already experienced many beautiful moments in my life, but also had to overcome some challenging situations. I discovered my disease in late 2000.

And so it began…

During a semester abroad in Spain, I noticed a swelling in my right eye. Back in Germany, it turned out in early 2003 that it was a tumor that required surgery. The surgery went well. Until then I was feeling positive, fit and healthy. Five days later, however, came the news that the tumor was malignant and highly aggressive. SHOCK - PANIC. "You have a highly malignant non-Hodgkin's lymphoma. We need to start chemotherapy”. My first reaction was, "I'm doing my diploma, not now!". But then my professor looked at me gravely and said: "I'm sorry, this is about life and death, forget your degree now."

The chemotherapy in the clinic ran from June to late August. A hard time, but then I recovered quickly and starting in October 2003, I was able to continue my studies. I felt immediately at home in my new class and met many nice people. Shortly before graduating in September 2004 I applied for my dream job at FOCUS - and who would have thought that with the study-break I would be taken – but I was! - and I was incredibly happy and grateful for that.

Late 2004: the second time

At the end of 2004 I noticed a tiny dot besides my eye. "Don’t get crazy, that's nothing”. Relatively unworried, I did an MRI exam. Then the doctor told me in his consulting room. "I can see something. Please contact your supervising professor, it looks like a setback”. PANIC - this cannot be true! In contrary to all expectations my blood counts were good - just like the first time. But there was this shadow on the MRI, and the dot besides my eye grew. For now, I just went ahead with my life, but after the tumor had grown back, I had to undergo localized irradiation – and the tumor disappeared.

A few weeks later, back at work at FOCUS, I noticed a knot again, this time below the ear. Dread – and fear. Friends reassured me, "that can have many causes," and I went as planned on holidays on Sardinia. There, however, I noticed more swellings in my face. My doctors were baffled – they weren’t familiar with this disease symptom. Through a good friend of my parents, I came into contact with an oncologist at the Children's Hospital in Ulm. The symptoms sounded familiar to him, the disease had a childlike expression with its course as well as the good blood levels. Whether I liked it or not, I had to stop working and put myself through chemotherapy again; there was no other choice. The second chemotherapy ... and again I lost my hair, I felt sick and so on.

Since March 2007 I have been working again with my dear colleagues at FOCUS. They have always supported me incredibly - THANK YOU - this gave me so much power! The disease was completely healed and all the doctors were pleased with me. I have recovered relatively quickly and was again as fit as before the illness, had realized my dream of riding, I was snowboarding, playing volleyball, traveling ...
In 2008, besides my job I even began to study towards a degree in commercial mediation. I had a healthy and happy life with many lovely people and enjoyed it to the fullest.

Today

A big trip to Australia was followed in April 2009 by a routine follow-up. "Why do I still have to do that?" I asked myself on the way to the routine follow-up. Unfortunately, the blood tests were not good, a virus from Australia was suspected. Many weeks later, after the blood tests did not improve, a bone marrow punctuation was initially all-clear. The final results two weeks later, however, revealed the terrible diagnosis: myelodysplastic syndrome. My bone marrow is damaged, probably caused by previous treatments. Your stem cells stop working properly, so blood levels are consistently getting worse. I could not do exercise anymore, and can only survive with blood preservations in the short term - and only with a bone marrow transplant in the long term. This message was and is a big shock for me - and my loved ones.

"Why can’t I just be healthy? Why not?" But these questions bring nothing. I have long resisted the idea of a bone marrow transplant, because I’m afraid of this brutal and dangerous surgery. I have fought, hoped, and engaged all my self-healing powers to try and get well without this intervention. But today, six months later, the situation has unfortunately deteriorated further. Now I have to look reality in the eye ... and I know: I WANT TO LIVE! The goal of the bone marrow transplant is to be again completely healthy and enjoy life with my family, my goddaughter, my dear friends and colleagues from FOCUS.

I HAVE THE CHANCE TO FIGHT, SO I’M FIGHTING!