It All Started With Bone Cancer
My journey to being an amputee has been a long one, in several stages, drawn out over almost two decades. In this first part, read about how it all began: A bit of pain in the knee, a cancer diagnosis, a year-long fight.
As a kid I loved sports. Track and field, skiing, skateboarding, surfing, volleyball - you name it and the chances were high that I liked it. You normally found me running around somewhere. And in my teens this somewhere often meant on the volleyball court. That‘s what I was really passionate about.
"A Bit Of Pain, That's All", So I Thought
Until one day when my left knee started to hurt. Initially nothing too annoying. The pain only occurred when I was very active and trained a lot. At that time - I was fifteen - I was still growing. And so the doctor wasn‘t too worried. At my age, given all the sports I played and still growing, so he said, the joints sometimes find it hard to keep up. „Just take it a bit slower for some time and the knee will sort itself out!“, so his advise.
And that‘s what I did. I took it a bit slower. I even stopped my volleyball practice as volleyball seemed to be the very activity that caused me the most pain. But still, the knee got worse instead of better. That wasn‘t the plan. And after some weeks I decided to see my doc again. By the time I had my appointment the knee was swollen and seemed to get bigger by the day. Something just wasn‘t right. I sensed it. And looking back, I think the doc sensed it, too. He just wasn‘t admitting it at the time.
Instead he referred me to a specialist. Someone with better equipment, being in a better position to come up with a better diagnosis. A computed tomography scan was scheduled, hoping to bring about a result we could then base a therapy on.
The scans showed some unusual growth in or around my upper tibia. And that in itself was worrying enough so that the specialist referred me to the next hospital to have a biopsy; i.e. a small surgery to take a sample of body tissue for further examination. I wasn‘t told then, but I am sure he already knew there is a high chance that the unusual growth in the upper tibia was actually bone cancer.
From the day I went for the biopsy onward, things happened very quickly. The tissue they extracted showed that I had an osteosarcoma in my upper tibia. So instead of being discharged after the surgery, I was immediately transferred to the teaching hospital of the University of the Saarland in Homburg/Germany. The children‘s oncology ward would be my second home for the months to come. And while I initially thought being admitted to the children‘s ward was a real bummer - I turned sixteen the week I first set food onto the ward - I think it actually saved my life.
Surviving Became A Long-Term Team Effort
And that is mainly due to the team around Norbert Graf, a well known and immensely committed cancer specialist with a great sense of humour who always seems relaxed even in the most stressful of situations. Norbert and his team are the most amazing group of people I have ever encountered. And looking back at my forty-something years and having lived on four continents and worked in more than two dozen countries, I think I have met more than my fair share of amazing people from all around the world.
Norbert isn‘t a sweet talker. He was open and honest, explained what I was about to face. He stressed that the months to come would be a journey that will take it‘s toll on the whole family and that everyone needs to pull his or her weight. Things would be rough and with an uncertain outcome. But he also made it clear that we could rely on him and his experience, on his team and the commitment of each and everyone in the clinic to do whatever is possible to beat the cancer. And while the odds weren‘t the best, I felt I had a good base to start this journey from. Norbert‘s way of taking me and my family serious in our worries and our fears, his way of being franc and not beating around the bush and the fact that he was always approachable made all the difference. We got along well from the very beginning - and are still friends 30 years later.
I started chemotherapy immediately. Some wild cocktail of three different drugs (while they were household names for me back then, I actually can‘t recall them anymore), to be administered over three consecutive weeks before my body was given a few days off to recover. Then the cycle would start again.
And while I was puking my guts out, lost my hair and almost 15 kg, I never lost my spirit. My family was great and the best support I could have wished for. And the hospital team did what they had promised in the beginning; that is they did what ever possible to beat the cancer. And they were good at it. The tumour responded well to the chemotherapy. The sarcoma stopped growing. It even shrank a bit - at least I think it did; it‘s amazing how memory fades even on facts that were so essential in my life.
After a few months it was time for a major surgery. The idea was to take out almost all of the tibia and replace it with an endoprosthesis. An endoprosthesis in my case was basically a metal bone replacement, starting two inches above the ankle going all the way up to the knee. The actual knee joint would be fixed into the femur with a metal pin. And while I would not be able to run and do sports with the new knee, I would be able to walk and live a normal life on two legs. Not too bad, I thought.
If the surgeon could implant the endoprosthesis, that was. From what he could tell from the x-rays, he wasn‘t sure that was actually possible. So by the time of being rolled into the operating theatre I had a 50/50 chance of leaving it with two legs a couple of hours later. Or of losing my left leg then and there. But being an almost naive optimist, I had it clear in my mind that losing the leg wasn‘t an option. It just wasn‘t going to happen. Not then, not there, not in this way.
Beating The Odds
And luck was on my side. Luck and a very skilled orthopaedic surgeon. He managed to implant the lower end of the metal rod firmly into my ankle and anchored the upper end firmly into my femur. A few hours later I woke up, happy. A few days later I saw the long wound for the first time, held together by almost 50 stitches - and it looked good. Another few days on, I started simple physiotherapy exercises. And soon it was back to the chemotherapy.
While the battle was not yet over, I was confident that I was on my way to recovery. There were ups and downs, my body had more and more problems handling the side-effects of the drugs, for some time I had to be fed by a tube through the nose and I felt weak and exhausted. But by about spring I just knew: Dying isn‘t part of the options anymore. Not then, not there, not in this way. Norbert and his team kept their promise to do their very best. My family kept its promise to create the best environment anyone could ask for for healing and recovery. And I kept my promise to never give up and keep it together till the last round of drugs was pumped through my system.
So after almost a year of battling cancer, of dealing with the side effects of chemotherapy, after weeks over weeks in which the children‘s ward was a second home I was able to slowly close this chapter and move on. Not from one day to the next. I still had to go for regular check-ups. But the intervals in between them grew longer and longer. The leg was healing well. I went back to school. I started a daily swimming routine to get fit again. I worked on my bike so that I could ride it with one leg. For almost two decades I lived a normal life. And while the leg wasn‘t fully functional, it was a trusted companion for a whole range of adventures.
Read more about my recovery from cancer in part II of 'My journey to losing my leg'.
Post by Bjoern Eser, the creator of The Active Amputee.