Reflecting on a Life with Mesothelioma
Update: George Schottl, a late-stage mesothelioma patient in Sweden, lost his fight against the cancer Wednesday, Jan. 14, 2015. He was 46. This is the second installment of a two-part series he wrote for Asbestos.com. We have faith his personal story can inspire hope and strength in others walking along the same path. Read Part I about Schottl’s treatment.
Despite my mesothelioma diagnosis, I gained the strength to be happy. I decided to limit my emotional spectrum by temporarily locking out weak emotions such as fear, grief, anxiety and anger.
I turned toward my inner self and became a survivor.
The only emotions I wanted to keep were hope and strength. Although it may sound strange, I would let my hate grow, and I would treat that hate. I would hate my cancer intensely. Hate everything about cancer. Hate all that was hurting me and my body. The hate would be my main weapon against the cancer.
The rest of me would just love the world, my family and everything that remained.
Going online was not good. All the information I read on the Web explained clearly that I would die soon, that it was not worth fighting for my own survival. That also was the constant message from nurses and doctors. I felt like a walking dead man who was still breathing.
But they were so wrong.
My wife, Sara, and I bought our new house, although doctors told me there was no reason to do it. I switched to Lund University Hospital. I participated in a worldwide clinical trial, thinking if it didn’t help me, it would help future patients.
I had no great hopes at that point. But before leaving for the new hospital, the tests showed some tumors on my right lung had grown, but later many of those had shrunk or thinned out.
The new clinic was so different from the first one, where I had received my grim notifications and where fear was the dominant emotion. This hospital was bright and pleasant. The nurses and doctors smiled.
One man in charge of thoracic oncology introduced himself as Dr. R. Ohman. He talked with me for an hour, looked at X-rays, and my liver and kidney tests. He told me something I’ll always remember: “It is not how long you live that matters. It’s about how you live.”
His words filled me with new power and renewed energy. All the stress and anxiety poured out of me.
I started the clinical trial on chemotherapy drug vorinostat the same week we moved into our new house in the horse district of Flyinge. It started with plenty of tests. I had to go to the hospital every week for samples, tests and interviews.
One day, my doctor informed me the tumors had not grown anymore. I was surprised, almost in disbelief. I started crying. I didn’t know what to do, say or how to act. In the past, I only had been told I was getting closer to the grave.
In 2009, when my tumors had been inert for two years, my wife asked me about the possibility of children. It was something we had talked about before my diagnosis.
Now it seemed like we began to live again. Knowing that cisplatin treatments would damage our chances of having children, we made arrangements earlier to save the necessary sperm in case this day ever came. Doctors allowed me to save “my little soldiers” for future use.
After a long dialogue with psychologists, counselors, doctors and behavioral scientists, they agreed we were mentally strong, healthy and ready to have children. The requirement was that you would be expected to live at least two years after the child is born.
A Miracle Baby
Because the tumor cells were inactive, we started the process of bringing a child into the world. Nine months later, the most beautiful child was born: A wonderful daughter named Freya. She was named after a goddess of Norse mythology.
She was not only beautiful; she was extra beautiful because she was ours. She was the promise of life, a promise of the future, as well as the promise of many dirty diapers and sleepless nights.
She is the one we asked for and dreamed about, and the one we never thought would come. Today, she is four years old.
Uncertain About the Future
Instead of the original prognosis of less than 11 months to live, I was given an expected life span of 45-72 months. I now have lived for nine years after my original diagnosis.
Recently, I’ve had some complications from an infection and continued fluid buildup in my lungs, but I go to the hospital every six weeks to have it drained.
It’s unclear how much longer I have, but I ask myself, “Why am I still alive? Is it my age?”
Doctors seem to think it’s my will and view of life. I refuse to go down easily. I refuse to give up my happy life. I refuse to give up my hatred of this cancer.
I believe the cause of my longevity isn’t just from will power, but mixing happiness and serenity, seeing the beautiful things in life, like the rain, a storm or a sunny day. I use the word living, and not surviving, because surviving on its own is not an option.
I have Sara who shows that she loves me, treating me the same way as she did before I became ill. Sara and Freya are the air I breathe. They are my everything. I just want to do good for them, for others, helping the needy and relieving those who suffer.
They are the ones who have kept me alive, however long that may be.
George Schottl, from Gardstange, Sweden, was diagnosed with malignant pleural mesothelioma in 2006 at age 38, a stunning revelation for someone so young and strong. He died Jan. 14, 2015, just two days after Asbestos.com published this first-person account of his journey. He was 46.