The Amputation

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.

After my official biopsy surgery in Germany, the clinic professor told me for the first time that an above-knee amputation may be required depending on how my tumor reacts to the chemotherapy. I started to have this thought in the back of my mind, but I also knew that I have to focus on the chemotherapy first before I rack my brain about it. The surgery was planned for mid January 2015 after finishing my first two cycles of chemo.

On 22 December 2014, two days before Christmas eve, I had my appointment with the surgeons to plan the operation based on the most recent MRI images of my knee. In the few weeks leading up I had already had a gut feeling on how the whole scene would unfold, and when the doctors walked into the room I already knew from their look in the face what the news would be. Initially, they delayed breaking the news and examined my leg again with a special ultrasound machine, which shows the blood flow of your vein and artery.

How do you tell someone who has put all their hopes in your hands to save his or her leg and want to justify why you have taken this decision and why there is no other possibility? This is exactly how they told me.

They showed me on the ultrasound that the tumor had grown around my blood vessels and the nerve was making the surgery too risky.

Now you may wonder why it would be risky? It’s actually quite simple: in order to have a chance to be cured, the tumor needs to be removed completely. The surgeons need to avoid any injury to the nerve, which can cause the parallelization of the leg, and hence they need to maintain a “safe distance” from the nerve. However chances of not being able to remove the entire tumor and leaving tumor cells behind were still extremely high. I would have a 100% reoccurrence chance and it would be only a matter of time if  didn’t go ahead with the radical removal of the tumor. So here I am with the latest news: an above-knee amputation is no longer evitable.

Surprisingly, I remained calm as past week’s gut feeling was confirmed. I think I used those two months during my chemotherapy to read lots about it on the web and to start accepting my possible destiny.

Only a day later I started to ask myself so many things and to feel depressed.

What were the things that crossed my mind? Let me give you a few examples.

• I will never be able to do sports again, especially my hobbies such as tennis, golf, skiing !
• I will walk around with a prosthetic leg and everyone will stare at me!
• I will never look good and appealing in a bikini anymore!
• How can I polish my toenails?
• Which guy will ever be attracted to a woman without a leg? Will I ever find a partner who accepts me the way I am now?
• I will never be able to wear flip flops again!
• What if I have children one day… I won’t be able to swim in the sea and hold them in my arms, as I wouldn’t have enough balance!

You may think these are all stupid things that come into someone’s head, but it’s the reality. It is part of the process accepting the “new me” and realizing the obstacles that will cross your way.

But for those of you going through a similar situation, don’t get depressed or feel you want to give up on everything. It is normal to have all those questions, and step-by-step you will find the answers.

I have to be very honest that I have an amazing family and friends by my side that helped me so much to find these answers. Every time I had one of my doubts, someone immediately had the right answer or was quick to research in order to give me a suitable answer.

For example: after some research my mum discovered that there are silicon covers to cover the prosthetic leg and feet, and the toenails can be even polished. Also there are prosthetic legs / knees that allow you to jog, run and even ski.

With time I realized that things would actually not be as bad as I initially thought and that I still will be able to do many things. I started to see things with a bit of humor and tried to outline the positive sides of being an amputee, e.g. when I go for pedicure, they can only charge me half the price or when I go for a message they can spend more time on my back. Some people may think this is a grim sense of humor, but I would rather see this as something positive. It is a bit like the question if the glass is half empty or half full. In my case I see it as half full! J

Small lump on the left of my knee is part of the tumor

Exactly one month later, on 22 January 2015, my leg got amputated. The night before the surgery, after all check ups and test were conducted, I was allowed to leave the hospital for my last dinner outside. My parents, who accompanied me to North Germany, and I went to an Italian restaurant: my last meal with two legs in public. It felt strange to know that the next time I would be having dinner, I would have a missing leg.

When I was back in my hospital room I took a picture of my leg, where you could see the tumor growing outside of the tibia bone, and I decide to send this picture to some friends and my family writing “Say goodbye to this little fucker”.

You should know that the last 4 weeks, since my doctors broke the news about the amputation, I became impatient and couldn’t wait to have the tumor removed. I had started to call the tumor “little fucker”.

The next morning I was picked up at 7am: I was the first patient on the schedule for the day. I was very calm, peaceful and couldn’t wait for all to be over. I was taken to the OR (operations room), where I was welcomed by a very chatty anesthesiologist who gave me an epidural anesthesia. I was then greeted by my surgeon, and shortly after I dozed off.

The next thing I remember is waking up briefly in the anesthetic recovery room: I couldn’t feel my legs anymore… I couldn’t move my legs anymore… and all I wanted to know was if it is over. A very friendly nurse answered in the affirmative, she stroked my hand and I fell asleep again.

Suddenly, I am in my hospital room surrounded by my parents and what is the first thing I do? I look beneath my blanket to ensure my leg is gone; to ensure the tumor is gone. I can still feel my leg, but it’s not there anymore.

I feel pins and needles everywhere in my amputated leg… it feels so surreal. I was warned that this is what I would feel after the amputation but I never imagined it this way. I was 100% sure I would cry after the surgery when realizing that all is over, but I didn’t. All I emotionally felt was relief… a big relief that the tumor, my little fucker, was gone. I can tell you it was the best feeling I had since my diagnosis!

Believe it or not but I asked my doctors to give me a picture of the tumor, as I would like to know what it looked like.

Here you go… now you know how a bone tumor looks like.

Upper tibia bone

Bone Description:

Green: Bone cement that was used when my first tumor was removed in Bangkok
Dark Yellow (surrounding the green): tumor / cancer tissue . The top part (outside of the actual) bone is the lump you see in my above leg picture, where you notice the tumor grew outside of the bone and infiltrated surrounding muscle tissue.
Bright Yellow (on the right): healthy bone tissue