donderdag 24 september 2015

My body

Things are happening to my body. You know, the chemo is like poison, blah blah, kills the bad cancer cells, but also lots of good ones. That's why my hairs falls out for example.

Tonight I woke up and realized that I lost part of the feeling in my left pinky. It's a side effect of the vincristina, the medicine I get in the second week, which I had twice now. The medicine can give nerve damage, not always, but in my case it apparently does. Usually you first lose some feeling in the outer parts of the nerves, finger tips and toes. It could also give some damage to my fine motorics. Usually it is reversible, from what I understand. But doesn't have to be. I already had some weird feeling in both of my wrists, which started with one wrist last week, which I thought was because of the infusion.

It's al very vague still. A non musician might not even have noticed yet. But I am very focussed on it. I want to get as much of this medicine in as we can, but at the same time I do not want to run the risk of damage to my fine motorics, especially in my hands...
I  am not sure what the consequences for my sax playing will be. Probably not so much, but we'll have to see. 

In the mean time I am playing the sax every day. Technique mostly. Scales, patterns for jazz, etudes to give the specific fine motorics I need the play the sax exercise and to know if something is going on with the nerves. 

I spoke to a patient of my doctor who had the same treatment and is finished now for half a year. He feels good again. Actually, he has been feeling good for some months again. This summer the neuropathy did not bother him anymore. Half a year and it was gone in his case. But... The chemo is different for everyone. The nurses cannot and will not give any predictions about how the chemo will affect someone. 

I got quite panicky tonight, feeling my pinky. It's all out of my control. When I have the flue I stay in bed. But I cannot do anything in this case. All I can do is create the best environment to minimize damage, in general. 
My body is still mine. But things are happening. And most of these things, if not (almost?) all are reversible. No reason for panic.

Let's see what the doctor says. She's dealt with this before. She should know.

Next week I have a pet/ct scan to see how the therapy is affecting the cancer. I can already feel the glands shrinking when I feel in my neck and chest. I think it's working. 

dinsdag 22 september 2015

Substance and tranquility vs or and entertainment?

I gave myself off for some weeks, off from everything. I gave myself permission to do or not do everything I want. Well, of course I am there for my family when I can, but other than that I did whatever I wanted. I did not play the sax for two weeks. Until my onco-physiotherapist said I should practice my  fine motorics to handle the neuropathy that might be a side-effect of on of the chemo medicins. I am doing etudes, scales every day now, well I try to... It feels like meditation. But it's hard to not always feel I need input, entertainment, music, series, radio, books. To sometimes let go...

This is one of the nurses putting a needle for an infusion in my arm. They don't always hit it the first time. Like last week when my veins were protesting...

Last week I noticed I needed something more. Substance and tranquility. I started meditating again yesterday. With the help of some mp3's. My onco-psychologist gave me some apps and audio to help me.

It feels good to have the time to let these needs seep in. To not always feel obliged to do something that's 'good' for me. After watching all of 'Breaking Bad' in three weeks, starting 'Fargo', a few seasons of ''Modern Family' I started watching documentaries, more public broadcasting, it came by itself. But now I need more. I started this blog, to create something. To publish some photos. I am starting small. Let's see what will follow.

I am thinking about composing, have a new ensemble in mind and I'm doing photography.

Even before I got cancer I felt the need to create something more than before. This might be my chance to start something, with music. I started with photography some years ago and I am expanding. At the conservatory I feel I missed this. To not have created something, to not having learned the tools to make something myself. Even at high school. School in Holland is practical, you're preparing for something that is set-up. Even at the conservatory, although it's more free there. But still, to create something from nothing is magical. Like this blog. Or the picture below. I remember when I took it, right before a concert. I didn't realize it would be something, but it turned out to be this. I love it.

Thanks Wouter de moor for posting this quote on FB in reaction to this post:

maandag 21 september 2015

They blew up my face!

I got an allergic reaction to one of the medicines. One of my best friends apped me that Isis called. Isis? I asked. To claim the explosion of my face....!

The second cycle is heavier than the first one. My body and mind are saying no. The allergy to one of the medicines, but also my veins are closing for the infuse it seems. The nurses couldn't find good veins in my left arm. I want the left arm, because the right one is the one that has nerve damage from my accident in 2008. In the end they had to do the right arm, in the hand itself, which I didn't want either. Because of playing the sax. But it seemed there was no other choice. 

The nausea was quite overwhelming this time as well. But at least I know better what to expect after the first cycle. 

Today is a better day. Slight naesea. But I feel like eating and some tranquility. The despair in the first cycle was tough. To be honest. 

I woke up Monday night at 2:00 with his face. Can you imagine? Red eyes and 39,5 fever, even with the prednisone. The worst of this cycle is over at least. 

12 hours later my face was back to normal with no fever. The next bag of medicin was ready to go in.

I am trying to train my saxophone technique every day to train the fine motorics, as adviced by the onco-physiotherapist (yes, this is a profession!). On hand it feels very good, practicing only technique, like a meditation, but on the other hand, I am not sure how my technique is now. It doesn't seem to be as fluent as before he chemo. Not sure why, fatigue, neuropathy (possible nerve damage because of one of the medicines), other things. I want to just focus on doing it. The medicines will have to go in anyway....

That's something new for me: I have to take these medicines because otherwise I will die... Sounds dramatic, but my onco-psychologist (also a profession!) pointed this out to me today.

Again, I will get better, and stronger than before. With some scars, physical and emotional, but hey, I will be able to play the blues better!

zaterdag 19 september 2015

I won the main prize at the Fotogram competition!

My photography professor gave me a heads up that she wanted me present at the award ceremony of the Fotogram competition (
I told her that I couldn't be there because of my resistance. The chemo therapy I am getting now kills my resistance to virus's and bacterias. I can't be in confined spaced with a lot of people. So my parents picked up the prize. They just called me: the main prize. I can't believe it!

These are some of the pictures I won with:

It made me kind of emotional to be honest. I am making photos since 2011 now and have developed quite a portfolio in the last years. I won something before but this is much bigger. When I started I loved to make something out of nothing. A thing that I have always missed in my musical practice. I made the promise to make photos for myself i the first place. But you know, it's tempting to enter a competition and have your work compared to others. Something I have done many times with my music. And of course one can ask what the extra worth is of having your work compared to others, especially when one makes it just for oneself... But still, couldn't be prouder! I am making something out of nothing and there are at least some people that like it, see something in it....

I would have loved to be there, but my main focus is my health....

It's not a fight

I have been getting chemo therapy for five weeks now. And I'll tell you: it's not a fight. It's not something I can beat. It's something that happened to me. For no apparent reason. I live quite healthy. And moreover, this type of cancer is not caused by anything I could have prevented. 

Other than that I am trying to find several things in my life:
Routine (getting up, breakfast, etc)
Sports (to keep my muscles in shape)
Play sax (to monitor my nerves that might be damaged due to one of the medicines)
Pass time (series, movies, books)
Tranquility (meditation, mindfulness)
Substance (photography, documentaries, composing)

But the priority goes to things that I need to survive. 

I am sitting this one out. Getting through my days. Making walks, watching series. Maybe starting some composing. Making photos. Sleeping, trying to get over my nausea. Rides and walks to the hospital. And trying to remain as healthy as I can. The medicines are starting to take effect. My muscles are getting less, concentration, tiredness. At the end it will be the worst. And again, there's nothing I can do. There are cancer patients who gave up and came back, there are the ones that were really fighting and didn't make it.... It's all luck. It's shitty. It's teaching me to let go more. That's what I'm hoping to get out of this. 

When I feel well I love my time with no deadlines with my partner and the kids. That's my greatest enjoyment.

Here's a photograph I made yesterday. A still life:

woensdag 16 september 2015

Cancer, really?!

In the hospital taxi on my way to the VU Medical Center for the third day of chemotherapy in the second cycle. 
Each cycle lasts three weeks. I started 24 August. In July I was in Mexico to visit my father in law with our family. I got a massive on pain on my chest there and went to the doctor. She had a ultra sound done which showed some swellings in my chest and under my armpits.
This is the advice the radiologist have after the ultra sound. Of course I was immediately alarmed. We all were. But the vacation was good in the end. 
When we came back my Gp send me with urgency to the Lucas Andreas hospital where I had to stay for some days. After several punctions that were not succesful they removed one of my glands. It could still be an infection. But in retrospect I think if they had to put money on it, they would root for cancer. After about two weeks the word was out: lymph node cancer. They told me that it was relatively good news. This is the 'best' type of cancer you can get. And they were afraid for methastized muscle or thymus cancer. That would have been very bad.
After one week more they told me it was Hodgkin's disease. From all lymph node cancers the 'best' type you can get. With a heavy chemo (beacopp escalated) there is a 90% chance of getting better. 
I like to think that my chances are even better because I am relatively young, have good blood values, am relatively fit and do not have diabetes or anything. 

In the end, well fuck, I got cancer... Shit.... On good days I try to see as a sabbatical. On bad days I try to get past the days, hours. 

I'll be back. Better than before.

More later.