Category: Osteosarcoma (Page 2 of 3)

I have been contemplating for a while if this blog should be a travel journey story, and I have decided not to do so. What to write after spending 10 amazing days in the Maldives? How beautiful the beaches and waters are? What an amazing resort I have stayed in? Well, I don’t think this would be very interesting to read and anyway pictures and videos give a much better insight to what heaven on earth is like!

But what I guess is more interesting for you to read is how I coped walking on sand, and what a life changing experience this has been for me. It’s not the fact of having spent a holiday in the Maldives (yeah, who doesn’t dream to visit one of those islands at least once in a lifetime), but it helped me to overcome my “weaker self”.

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Almost a month has passed by since my latest treatment updates and I can finally say things have sort of paid off. I don’t have good news, but no bad news either. So let me tell you what has happened in the past 4 weeks.

I have done 2 cycles of chemotherapy, which means I have done 2 times of 4 days with a break of 21 days in between. Additionally within 3 weeks I have done 13 irradiation sessions on the spine and 8 sessions on the two big lung metastases. Surprisingly, I had no side effects throughout the entire 4 weeks, besides some crazy low blood values. As we had expected my white blood cells were low for a few days, but this time I had low hemoglobin, in short HB, and platelets values.

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I have decided to tell you a bit about the various challenges I have faced since my illness, as bureaucracy in most countries can be insane and extreme.
If you think the illness itself is the biggest challenge, you are wrong! It is actually the entire paper work involved in the process for insurance companies and citizen centers. I totally underestimated this part and I am so thankful I got my parent’s help with all this.
So let me tell you a bit about my experiences…

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I woke up this morning thinking about the things I have been doing over the past years, and the things I haven’t been able to do since I got sick.

It is incredible how much such an illness affects your day-to-day life, and how you suddenly have to adapt with the situation.

I would simply like to share a few thoughts that came into my mind in the past two years, and perhaps someone who may be in a similar situation or may understand what I am trying to say.

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I am finally getting to the most recent treatments that I am currently undergoing. As my doctor always says (and I quote): “Let’s see if we can find another option in our grab bag”. And indeed he did.

After the diagnosis of my last CT-scan my doctor immediately suggested to do irradiations of the 3 larger metastasis to slow down their growth. Additionally, a chemotherapy with new cytotoxic agents was suggested by several doctors and I immediately agreed to go ahead. Within 24 hours we had everything planned for the new treatments.

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Prici’s 30th birthday

Upon my return from Berlin, I started with my second cycle of chemotherapy and was handling it very well with almost no side effects. Besides losing my hair again I was feeling fit and energized. I was able to celebrate my friend Prici’s 30^th birthday and attend her family brunch, as well as her party in the evening. Being able to do the things I like, like visiting friends I wanted to see and having a little bit of independency made me feel immensely fulfilled again.

At the same time my orthopedic technicians realized that the rental time for the provisory leg was expiring and we needed to look at the final prosthetic leg for me. However, there was one more issue to overcome with the health insurance company. They insisted on me doing the rehab where I would have to have specific walking training and test different legs. Since I was handling the chemo well, I decided to start with an ambulant rehab simultaneously.

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Well, where are we at now? After my new diagnosis, we had to come up with a new treatment plan, and I anxiously waited until a final decision was taken.

Having now several new metastases in my lung (and not single ones that we could remove surgically as before), I was told for the first time that at this point I don’t have a “healing chance” anymore, a nice way of saying “sorry, you are not going to survive your cancer illness”.

What emotions go through someone’s mind when being told such a thing? To be very honest, I don’t really remember how I felt and what I felt. I do however remember that I neither cried nor felt sad. I was still pumped with all that positive energy that I had absorbed at my birthday, and I was more motivated to fight than ever! I told my doctor here in Stuttgart: “Give me the tools to fight, and I will do so!”

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After my birthday celebration, I turned back into the old “me”, filled with positive vibes and energy. I was recovering from the surgeries and could feel I was getting stronger day by day. When I kept relooking at the images and videos of my party, I decided that I did want to share these moments with all my friends around the world and decided to build a website for that purpose.

However, my der friend Tara kept telling me to start writing a blog, and use this website to share my experiences … not only my cancer fight but also my travels. In the end, she convinced me and I started building the website with a friend in Vietnam.

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Many of us have mixed feelings when making the change from the 20s to the 30s, and originally I was very excited to plan my 30^th birthday. Already in 2014 when I was still living in Bangkok I was making plans on how to celebrate my 30^th (even though it was 2 years away). I had this idea of inviting my closest friends and family over to Thailand and perhaps booking a small boutique resort for a weekend.

Already in September (2015) my family started asking me what I wanted to do for my 30^th birthday in January, and to be honest that’s when I realized my plans were not feasible anymore and my disappointment was increasing. I started pushing the thought of my birthday aside, and I didn’t want to talk about it.

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Weeks went by and I was recovering from the surgery: the chest pain was getting less and less, day by day, however, my coughing remained.

In early December I got a call from my dear friend Danilo who recently got married and had baby girl twins in August. His Moroccan wife and family organized a sort of wedding and baptism ceremony for their girls in Marrakech, and invited me as I am honored to be one of the godmothers of the baby girls. I was totally excited to make a trip to Marrakech, but I required the permission of my lung surgeon first. Hence, I sent him immediately an email and shortly after he responded with positive news that I was allowed to take a flight.    Continue reading