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!”
Instead of freaking out and getting depressed again, I decided I’ve simply got to change my objective / goal. Previously, the goal was to be healed and be declared as cancer free. If I can’t have that now, then I have got to change my objective to “gaining time and survive this cancer as long as possible”.
Someone who used to be close to me before told me: “Mind over matter”. And I have to admit there’s some truth in it, as it is all in our mind set what we make from a situation.
With this new diagnosis I realized that I have no other option than to avoid another chemotherapy and my guess was confirmed. I was lucky to be able to do my chemotherapy ambulatory, which means I go into hospital in the morning, get my chemo for several hours and then I am allowed to go back home. I was glad to have to stay in hospital overnight, as I had spent too many months there during 2015 and frankly I had had enough of it.
My new cytotoxic agents were: Gemcitabine & Taxotere (also known as Docetaxel). Both of them in combination are used for several metastatic cancer types, especially for lung metastases. Taxotere interferes within the cell division, which means the aim is to disrupt or slow down the process of metastases growth and further spreading. The objective of this chemo type is increasing survival time in patients with certain types of cancer, and one of those is in metastatic sarcomas.
So how does one chemo cycle look alike?
Week 1: Gemcitabine
Week 2: Taxotere and Gemcitabine
Gemcitabine is an infusion given via my port catheter within 90 minutes on one day only, e.g. a Monday. Exactly one week later (week 2), 8 days later I received Taxotere, a 30-minute infusion followed by Gemcitabine given within 90 minutes. So spending those several hours in hospital was quite bearable and I was extremely happy to be able going home after.
In week 3 I had a break and no chemo was given, whilst in week 4 the next cycle began following the same schedule as above. What are the side affects? It could be any of the usual side effects depending from person to person, but in general this treatment is considered as light and compatible. I was lucky, as I was untroubled by nausea, vomiting, fever and fatigue. However, I started loosing my hair again and my blood values dropped as usual. I had again neutropenia (low white blood cells – but not as bad as during my previous chemos), and thrombocytopenia, which is a decrease in blood platelets. The function of those platelets is to stop bleeding by clumping and clotting blood vessel injuries. Hence, when there aren’t sufficient platelets the blood gets too thin and you can have internal bleedings without noticing. A normal human platelet count ranges from 150,000 – 450,000 platelets per microliter of blood, and shall the count be below 50,000 per microliter an emergency treatment would be required. At some point I had mine at 12,000 and received a thrombocyte transfusion. It is quite common to receive red blood cell or blood platelets transfusions whilst doing chemotherapy treatments, especially after several cycles. The oncologist team doesn’t really freak out in occasion like whilst you house doctor (if you do let him do your regular blood tests) might freak out wondering why you are not bleeding internally to death. No joke, my house doctor called me once after receiving my test results and asked me if I want to bleed to death?
The aim was to do 3 cycles in total until another lung CT-scan would be taken to see if this therapy is helping. As I was tolerating the chemo quite well, I was also able to do things and travel in my free time.
Katha and I on the Spree Cruise
For that reason in between my chemos I headed to Berlin during ITB (one of the largest tourism trade shows) to see old work colleagues and business partners. I took the opportunity to catch up with lots of people I hadn’t seen since I stopped working and stayed at my close friend Katha’s place. I had a pretty great 4 days in Berlin: besides visiting the tradeshow on two days, I went on a cruise on the Spree river with Katha as we had lots to catch up on.
Talking about Berlin, I got another funny airport story to tell. As I mentioned in my previous blog “Facing Reality and Lung Surgery”, traveling on planes requires good planning and you have to allow for more time at airports. When I was at Stuttgart Airport going through security, I was pulled out and taken into a separate private cabin, as they needed to look at the prosthetic leg. Most times they do an explosive test of my prosthetic leg, which has always been negative in the past. So this time they decided to do two tests: the first sample was taken from my shaft (being plastic), which was negative. The second one was taken on my foot (being metal) and turned out to be positive for explosive. Now I was stuck in this cabin with two security guards waiting for the police to come. On one side I started getting annoyed on the other side I started making jokes such as “do I really look like a person going to blow up a plane to Berlin?”. The security guards didn’t find this very funny though. At first a policeman arrived, looked at the test result and had no clue what to do with me. He then called another colleague and a few minutes later another policewoman arrived. She looked at the test result, looked at me and then asked: “Have you been using hand cream or liquid disinfectant not too long ago?”. I confirmed that I use alcohol liquid to put on the prosthetic leg as it helps to slide in properly and finally I was allowed to continue to my gate to board my flight to Berlin. I really have to learn now how to be patient at airports, as I will be facing these issues every time I travel. Who knows maybe one day I have a story to tell about being arrested?
My brother and I