Round one of the second level

Dear friends,

I am at home right now. Watching the worst movie ever probably 'Ghost in a shell'. I figured while I have the time I might as well watch some movies and catch up. I wasn't going to write. I wanted to share my thoughts when I had something positive. A new reason for all of this. But this movie is just so bad that I wanted to do something worthwhile.

The first time I got lymphoma I used this period of chemo and recovery to go into new directions, to think about what I had been doing and if I wanted to continue on this path.

Last Wednesday I started immunotherapy, and until Saturday I had chemotherapy. Now I am recovering and waiting for my body to get into a good enough shape for the next chemo. In the mean time I have been on the look out for a new reason. But I can't find one. I have to wait until this is all finished and keep an open mind. Even more than before. Because my body might change too much because of the chemo. Or not... I can't tell.

All I know is that I have to deal with this treatment day by day. Deal with the nerve and ear damage that might take place. Deal with the overwhelming nausea, the muscle loss and cramps. Trying to exercise, eat and sleep.

I will try to keep playing the saxophone. But at the same time, I am not sure whether I will still play sax in one year.

To be continued....

All the best,
Ties

Update chemo therapy: 3 months of recovery

Three months now. More than three actually. Without chemotherapy. My last chemo pill was on December 21st 2015. It feels like a long time ago. I have hair again, I lost most of the weight. I look normal. But I don't feel normal. My biggest complaint is the tiredness. My energy is like the battery of my phone. It works fine until it's empty, then it goes off. Before the chemo I would feel my energy level going down slowly. The moment that that energy is gone I can hardly predict. I know it's earlier when I had a late night or a bad night. It varies from around 13:00 to around 18:00. I had a very busy week last week and I still have to regain my energy. 

It's costing me effort to write about this period. I want to be normal again. But I am not. I am sliding back into my 'normal' life and this causes friction with the way I am now. I've changed. Personally and musically. One of my fellow patients who is one year ahead of me told me that is effect wore off after half a year with him. But I don't want it to wear off. Besides all the shit this chemo and the cancer gave me, it also gave me an opportunity. A chance to stop, to look around, to contemplate at an age where I should be running around. I've had a sort of sabbatical. Let me stress this 'a sort off'! Because if I could choose, well, you know. I had the chance to reevaluate everything. And it seems that so far my life is ok. I have a wonderful family, great friends, who take care of me, I have enough fun work (playing the sax)... But what I need to learn is how to focus: what do I really want? And how can I get there? When I was younger, at the conservatory I had an attitude that covered up my insecurity. Now I am insecure and full of (self) doubt, and I feel this covers up yet another layer. The layer that is real, that is me. The layer that wants something very clear and has a passion.

I keep a journal nowadays to write down what I feel, want, experience, etc. I try to stop myself several times a day to feel how I feel, what is going on. I chose a small number of projects that I want to work on the coming year and I try to stick with those. I need to do things that give me energy, instead of only take energy. Things that stimulate me and keep me going. Otherwise I will be too tired to work. A good way to get myself to limit myself and to do things that are worth my while.

Yeah, that chemo has some upsides.

Photographed today at Sloterdijk Station