Before I could start with irradiation on the pelvic bone we decided to conduct two cycles of chemo with two new cytotoxic agents: Etoposide and Ifosfamide.

Basically, this is a new protocol we were about to experiment with which is designed for reoccurring sarcomas. My doctors had come to the conclusion that the previous protocol most likely prevented developing new metastasis, but didn’t work for the existing ones. For that reason, we decided to change my chemo type.

On 3 June 2015 I went back into hospital to start my first cycle.    Continue reading

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.

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This topic is a bit more sensitive, and I would like to explain things a bit more in detail. Most people react shocked or feel pity for you when telling them that you had your leg amputated.

How do you react when the doctors first tell you that because of your illness a leg amputation may be required in order to survive?

The first time it was said by my doctor was after my second diagnosis in Bangkok: “I don’t think that an amputation is required yet!”

What the hell does “not yet” mean? How is it possible that things go so much out of control within such a short period of time? I have to be honest that that evening back at home I cried and I kept saying that I do not want to live anymore if my leg has to be amputated. I seriously rather wanted to die than being suddenly legless. However, I calmed myself down, since the term “not yet” was still something positive. It means all is still under control and a limb salvage surgery was still possible.

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My doctors informed me that the treatment period would be long, tough, and energy draining. Before starting with my therapy, I got a “portcath” (also just simply called port) implanted beneath the skin on my chest. It is basically a catheter that connects the port to a vein, through which drugs and the chemo itself can injected or even blood samples can be drawn.

This small surgery was conducted with a local anesthesia, and I was totally awake and even chatting with the surgeon.

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Following my travel blog about Nepal, I should mention that I purposely wrote this in chronological order as I started to notice another swelling during my trip. I blamed the increased pain in my knee on the long rides in the car as well as some walking during the day and thus u[on my return to Bangkok I arranged another doctor’s appointment.

My last selfie with long hair

On 1 October 2014, one day before I had to take my flight to Germany for my mother’s 60^th birthday and a business trip in Europe, I went for my x-ray in the evening. Again my doctor had this weird look on his face when I returned into his office, and he confessed that it seemed to be like a recurrent tumor. I was sent immediately for an MRI, but at this point I was already not able to straighten my leg and I kept having cramps. This time it was really hard to lie still for 30 minutes; I had tears in my eyes from the cramps and pain.

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Recovery time from surgery! I was meant to rest and keep my leg lifted to avoid swellings. Unfortunately, the month of May is an important month at work with loads of deadlines. I ended up working constantly from home, and had to attend important meetings.

On the one side I was facing lots of pressure at work due to the deadlines (if you don’t adhere to them it will affect the company’s business for the next year), on the other side I was in pain, pumped with medication and I was psychologically affected.

Bloody hell, try to get used to the idea you have a bone tumor with a high recurrence percentage!

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