Alas, no Aberdeen for me

Today I decided not to go to Aberdeen after all. I'm afraid the chemo is taking a heavier toll on me than I dared to admit. This Sunday we had a very nice birthday party for Nuria with 10 children going by train to Amsterdam, taking a tiny ferry grip across the IJ waters behind the railway sation, and then walking to the Muziekgebouw aan 't IJ, a wonderful concert hall offering mainily contemporary, alternative and non-western music (in the past few years, we cooperated with them on several Chinese music series). There is a seperate floor there with a 'sound-playground' where they conduct workshops for children from seven up, who can experiment with all kinds of newly invented music machines. For instance there's a kind of huge mushroom with all kinds of coloured patches. Each patch you touch or tap produces a different sound. A group of children are asked to stand around the machine and invent a soundscape together. There's a floor with light patches that give different sounds when you step or stamp on them, so you can dance your own composition. Then there are computers on which you can draw sounds (!), or compose pieces of music. It was a great success. But of course, on the way back I was pretty exhausted... I had another rather full day yesterday and woke up feeling sick and tired. So even though my acupuncturist had kind of given me the green light (apprehensively), I realized my body simply isn't up to travelling at the moment.
Ah, how I'll miss all those friends - an the Scottish music!!! I'm going to try to reach some friends through skype these days. If any of you happens to be on the conference with a skype-connected laptop, or if you're at home (or at work..) feeling like a small chat: the skype account name of my laptop is frankchime. Hope to see you there!

Another month has passed, how time flies! Nuria started school again on the 15th of August. Feeling quite energetic, I enthusiastically brought her to school those first days. She's happy with her new teacher, and skipping a class was the right choice for her. Two other boys also hopped over to grade six, so she's not the only one. And she's in a class with grade 5 and 6 kids together, which makes the pass-over much less harsh. A week later, Elias started middle school. He has chosen a classical upbringing in a modern jacket: grammar school in a brandnew school building, with possibilities for computer classes and the like. He came home the first week with enthusiastic outcries like 'mom, this school's really super-cool!', and on Friday he sighed 'It's almost a pity that there will be no classes tomorrow...' Of course after two weeks, he's getting a bit apprehensive about all the homework, but overall speaking he likes the place, the teachers, and especially his new schoolmates. He brought home two new friends at the end of the first week. An absolute novelty! (During his entire primary schooltime, we had to push and pull to get him to play with classmates...) It's great to see both our children grow and mature like this!
As for myself, I overdid it a bit in those first weeks. I felt so good that I ran around like a mad cow let loose in the meadows in spring... My acupuncturist started to notice that I was tired, and gave me very earnest advice to ease off. After some time, I realised he was right. So I wrote the word 'rest' in my agenda on every day of the week, and undertook some 'serious sleeping'.
Last Wednesday I had another bout of chemo. The oncologist could not give me very encouraging news: the blood tests show no signs of improvement, and I might have to change to a different treatment next month if the CT scans give reason for that. But I'm not going to let my mood go down by some bloody blood tests! I still feel pretty well, so that's what I concentrate on. Just a bit sick from the chemo, but that usually lasts a week at the most. In my 'energetic period' I took the bold step to register for ESEM in Aberdeen (the annual European Seminar in Ethnomusicology, which Frank and I have been attending ever since the late eighties, and of which we took over a lot for our Chime conference format. It's a circle of friends, and I have been missing them a lot since I had to miss the last two conferences.) I HOPE we'll be able to join, but I realize that it might not be, if I don't feel fit enough. I'll simply let my acupuncturist decide next week.

During the dark summer months of which I spent most time in hospital, there was another very special person who 'fell into my lap' just at the right time. This was Peggy Huddleston, a researcher from Harvard University, who happened to be visiting a friend of ours in Amsterdam for a few days. Peggy has done groundbreaking research in the field of mental preparation for surgery, which makes patients heal faster and feel much better. She's also a healing practitioner. I had not heard of her (and knew nothing about 'healing'), but when this friend of ours proposed to let her come and have a session at my home I responded with a thankful YES! She sat next to my bed for more than two hours and we had a wonderful talk and unforgettable experience together. She gave me a tape with a relaxing text, during the second half of which she leads me to heal myself by thinking of my loved ones, and thinking of / experiencing some of the things she taught me during the session. I meditate with the help of this tape twice a day. There are times when the feeling is very strong, and other times when I'm a bit distracted. The best of times are... the weekly acupuncture sessions! When I lie down there relaxing with the needles, I run the tape in my head, at my own tempo, and somehow, the tears start floating automatically. These tears are like dew, like a refreshing shower that cleans and rejuvenates. I'm extremely thankful to both Peggy and doctor Tjong who opened this door for me. (For more information on doctor Tjong, see www.tjongtjintai.com. For info on Peggy's work, see www.healfaster.com)

This has been an awfully long silence. With reason. I have been in hospital for almost a month, and was not well. I simply had zero batteries, my body was a wreck. Luckily enough I remained mentally as strong as a redwood tree. But it was scary to see my body deteriorate. I felt permanently sick, so food and drink were causing me a lot of trouble. My weight slowly dropped to an all-time low of 47 kilos, and I stayed in bed so often that walking became difficult. I saw my oncologist on the 1st of August while sitting in a wheelchair, pushed by Frank. She told me I had to get back to chemo, or give up. I felt rather hopeless, since at that moment I had the idea my body would not be able to stand another round of chemotherapy.

Mum's home again!

But then a miracle happened. I saw a 70-year-old Chinese doctor on the 2nd of August. He treated me with some needles, and wrote out a receipe with lots of Chinese herbs, roots and other goodies from nature. The first time I drank the broth, I could suddenly eat a full meal again! My nausea vanished like snow under the sun, and I could stop taking pain killers and anti-nausea pills the next day. Since then, I felt my body going uphill like Tom Smallthumb wearing seven-miles boots! Yesterday I weighed 51 and a half kilos, my face has a normal colour again (for more than a month I had looked like a ghost with hollow cheeks). I took my chemo two days ago without any trouble. I went through it singing! I can walk around again and even went into town for a whole afternoon with Nuria last Tuesday!

There was one friend who sent me such a lovely 'present' that I'd like to share it with you. It was David Hughes, researcher of Japanese folk song, and long-time friend since the 1980s. To give me something to cheer me up, he sent me a link, or actually two links with a song he had written and sung himself during a housewarming party recently. It was this song that gave me that little bit of energy to get through my difficult hospital period last month. He gave me permission to put the links on my blog. Enjoy!
www.youtube.com/watch?v=9vmvrj_pIhM
www.youtube.com/watch?v=1s-r_VhBFOE

Today is not only the 90th birthday of the Chinese communist party, it's also my 49th birthday. And boy, do I have something to celebrate. Two days ago I was saved by surgeons who performed an extremely urgent operation: my intestines were on the brink of bursting. I'm extremely thankful that the operation was successful, and that I'm still alive!

The past few weeks have been difficult, even critical, and I know that there's another difficult period for me ahead, but at this moment I mainly feel great relief. The operation came in the middle of a new round of chemotherapy, not exactly ideal. It remains to be seen how I will get back on my feet. But it seems imperative now to live by the day, by the hour even, and to tread in small, careful steps! I do feel very sad about having to miss yet another Chime conference, organized by our good friend Szhr Ee and her colleagues in London...

Happy to eat my first (and only)
birthday biscuit after a week of
vomiting and constant nausea

The nurse came in this morning with clourful paper guirlandes and lanterns to cheer up my hospital room. At 11 o'clock, my parents came over. They just passed their 80th and 83rd birthday last month, but hadn't celebrated that in fear of too much stress and hassle. So now I finally had the opportunity to make up for that. I sang a song for them and together we celebrated the occasion that the three of us today reached the respectable age of 212!

Sorry for the long silence. I'm not that good in bringing less happy news. Tests in the last few weeks have shown that the illness did not vanish, notwithstanding the operation which I had in March. It means I will have to start a second round of chemo therapy this week. The treatment will take place once every four weeks, six times, till the end of October. We have scheduled it in such a way that I will be able to attend the upcoming CHIME meeting in England, and hopefully we can enjoy some vacation there as well. The good news is that I'm still feeling very well, and do all the things I like to do. Another positive note: one of the CT scans seemed to indicate suspect spots in one breast, but this turned out to be 'false alarm'. At least one worry less...

The tokens of attention of some of you are like soothing spring showers on dry soil. Thank you sooo much! I'm absolutely convinced all your positive thoughts have a healing effect.

Photo made by Frank, 29 March 2011

When Frank suggested to me in January to set up a blog about my health, my first reaction was quite hesitant. Put news about myself online? Specifically news about something as personal as my own health? It felt like a weird kind of exhibitionism, something totally against my nature. Questions of concerned collegues and friends however did start to get in the way of our daily Chime-correspondence, and I decided to give it a try and go with modern times. Frank helped me with the first message, and after that (read: after another month of hesitation) , I finally found the courage to write my own messages.

Now I'd like to go a step further and report in some detail about my last operation. This is in total contradiction to my upbringing: traditionally, within my family, talking about ilnesses is simply 'not done'! But the story is actually pretty exciting, and I'm sure some of you will enjoy reading it. In the end, you're reading this blog to know about my health, isn't it? If you're not interested in medical details, simply skip the rest of this message.

When the first CT scan was made after the big operation last year, the doctors told me with some reluctance that it had shown a piece of disputable material somewhere on the top of my liver. Their first idea was to wait and see how chemotherapy influenced this spot, and perhaps stop the chemo treatment halfway and operate first, if scans showed this was urgent. Nothing had changed halfway down the treatment, and chemo was continued as planned until December. Scans showed no change, and the urgency of this 'detail' seemed to be forgotten. In February, I decided to call the oncologist myself and ask whether it wouldn't be a good idea to get rid of this piece of meat (knowing the liver can be pretty vulnerable)! She reacted enthousiastically and immediately made an appointment with my gynaecologist and a liver specialist to get the job done. So I went into hospital on 15 March thinking that I would come out with a, perhaps a tiny bit smaller, but healthier liver.

The operation was quite heavy, quite successfull and quite surprising. It turned out that the nasty bit of material was not on my liver, but on my diaphragm! So there they were, a liver specialist and three gynaecologists cutting away at my diaphragm. When I woke up, the first thing they asked me was to take a deep breath. Ouch! That hurt! But I did it, and survived. Like a newly born, taking its first breath... The days that followed, to my vague surprise, I was treated like a lung patient: I was on oxygine, had to inhale some kind of medicinal steam three times a day, was visited by physiotherapists who gave me 'swimming' and breathing excercises, and had to practice my lungs with a little plastic cup with an orange ping pong ball in it which I had to get floating for five seconds by inhaling deeply (of course the kids were eager to try this toy too!). Nobody at the gynaecology department (where I was nursed) could explain to me clearly why all this was necessary, all they told me was that the surgeons had cut a hole in my diaphragm which they had neatly sewn up again. Finally my own (much admired) gynaecologist came to see me just before I left hospital again. He explained that the diaphragm is a kind of muscle which regulates your breathing (so it's a moving life force, like your heart!) And it's the boundary between your ventral cavity and your breast cavity. Normally, there is a vacuum between the diaphragm and the lungs, so that the lungs can be properly effected by the pulling force of this breathing muscle. During the operation, by making an opening in my diaphragm, this vacuum was lifted! I have no idea how they restored it (or perhaps my own body did this), but they made several lung photos to be sure that everything was all right. And my body has been doing a lot of recovering since. I must admit I have my hi and lo days, but over all speaking I'm quite proud at the way I'm coping. I was told it takes about six weeks to heal from a biggy like this.