The Good, the Bad and the Ugly

So what happened after my big surgery? Well, after 10 days in hospital where I started to make my first steps slowly get used to the ghost pain, I was able to finally go back home. Within 2 weeks my wound was healed, and the staples were removed (yes the wound was closed with staples and not with strings). I immediately had to continue with the chemotherapies as I had 4 more cycles ahead (same process & sequence as describe in my other blog). I knew this would be another 5 difficult months, but things seemed to be looking good and promising.

On the same note, I have to mention that whilst I was preparing for the amputation one of the MRIs showed some spots in my pelvic bone.

One of the days in hospital

Hence, the doctors wanted to conduct a biopsy to ensure this was not metastatic cancer (which means cancer that has spread into other body parts). Before the amputation surgery, the doctors tried to conduct a core needle biopsy under a CT-scan machine. How does this work? With the needle the doctors can obtain a sample from the tumor tissue, and in order to hit the right area, they conduct this procedure under the CT-scan. I only had a local anaesthesia, so I was awake the entire time. However, we were facing a big problem: my pelvic bone was too hard, and the needle not strong enough. With a small hammer they tried to hit a hole into my bone, which was very uncomfortable. I didn’t feel any pain (due to the anaesthesia) but the sound of the hammer and the pressure on my bone was not pleasant. Unfortunately, we had to stop as it was pointless to continue. For that reason, we decided to inform the clinic where my leg was going to be amputated to prepare a incisional biopsy at the same time.

My biopsy result came back clear, and it was a relief to know that the cancer hadn’t spread. I was extremely happy and there was finally hope to have a chance at healing!

My meds: 20 pills / fizzy tablets in one day

The next two months were hard, because I felt the chemo’s were getting stronger with more side effects. During Easter I had such a bad mouth infection that I was no longer able to neither eat nor drink. I got intravenous nutrition for a week whilst I was in hospital. Approximately, at the same time I had one of those standard MRI scan check ups to ensure the cancer is not coming back.

One morning in April (2015) after my MRI, my doctor came into my room and officially declared me as cancer-free.

Finally, all the suffering from the chemo, the sacrifice of loosing my leg, and my hair would pay off . There was finally a light at the end of the tunnel!

My joy and luck were short-lived, as the next morning my doctor came back to room to inform me that the radiologist (who reads the MRI scans) was still uncertain about the spots in my pelvic bone, and strongly believed that something was not right. She insisted to do another core needle biopsy, but this time with a surgeon and a general anaesthesia. The rollercoaster of feelings, emotions and fears had started all over again.

And indeed, what else – the result was metastatic (cancerous) bone tissue. My dream of finishing my chemos soon vanished, and I was confronted with the fact this would be a long journey ahead. The first reaction of all my doctors was that the metastasis in my pelvic bone have to be removed with a surgery in order to have a healing chance. But how do you do this? I already have an amputated leg on the left side, and now a resection of the pelvis on the right side?

An artificial pelvis was rejected due to the infection risk because of the chemos I had to continue. What alternatives did I have then?

Specialized orthopaedic surgeons suggested removing the right pelvis, and placing the femur (thigh bone) at the coccyx. This however, would mean not having a proper hip anymore and my right leg would be shortened by 6-7cm.

To me this sounded like a stupid idea. Undergoing such a surgery would mean I would have to remain in bed for months, and even sitting would be an issue at the beginning. To obtain a second opinion I also drove to Bologna in Italy, where one of the most reputable orthopaedic clinics in Europe resides. They told me the same thing as in Germany, and I was pretty disappointed for having such limited options.

I slowly started to accept the fact that I would have to undergo a number of upcoming operations when another option was proposed: ion beam radiation.

One more fact about Osteosarcomas: these tumors are normally radiation resistant. (not to be confused with Ewing’s Sarcoma which can be well treated with conventional radiation).

So why all of a sudden radiation becomes an option in my case? Well, I am not talking about conventional radiation but about “ion beam radiation”.

However, before commencing with the radiation at the pelvis, we also decided to change the composition of the cytotoxic agents. So all of a sudden I have new chemo cycles and radiation ahead.

PS: My cat “Winnie” enriched my life during these tough months. I got the kitten as a present from my parents after my amputation. I originally planned to get a kitten in Bangkok after my business trip in Europe, but as you know this didn’t happen.

When I was searching for little kitten at animal shelters around Stuttgart, I noticed that 3 little sister kittens were found on the streets and brought to the shelter on 22 Jan 2015. This was the day I had the amputation; a date that has a significant meaning to me. That’s when I decided that it will be one of these kittens that would be coming home with me.