a teeny weeny world

Well, about five minutes after I published my last post, the frst wave of nausea set in, so I took my pills as advised and was basically knocked out for that night. Wednesday was okay for the first part. Got up to help get the kids get dressed in the morning. Managed to answer some emails. Had to get my neulasta injection at the hospital in the afternoon, which pimps the production of white blood cells. I got over-confident and persuaded Isabelle, who took me, to have a coffee and a sandwich, as we were out, but I then was caught by a very sudden and unsuspected wave of nauseau, including a few hot flashes, so we had to go home straight away. Back to bed. Thursday was just not very good at all. I bascially lay in bed all day, watched the film Factory Girl, which wasn't great, but it certainly got mixed up in my drug aided dreams, which also included massive objects being pushed through my window, me trying to pick Jip up from school, but not being able to see anything clearly, strangers walking in my house, Lizardy escaping: all very peaceful. The evening was better. And now it' s Friday. I am feeling nauseous again, and lying in bed - HEY, when is this going to stop?!! - my teeny world is being kept that way by the elements. It is raining. Tick Tick Ticking. My intended walk in the fresh air must wait. I think I will surrender now and watch Showtime.


S1

Chemo week 1

Dear sisters,

I have just arrived back from the hospital where I have spent rather a long day having my first chemo treatment. I had been gearing up to this day (meaning I got the washing done AND folded it AND put it away, all in one week) as if the world was ending on Tuesday, October 9 2007. It didn't.
Hear I am, feeling a bit woozy, but still fine. But then again according to my fellow patients I probably won't start feeling ill until tomorrow evening. It was a jolly bunch at the infusion centre. I can imagine we will be having lots of fun together in the coming months.

I started on the 2nd floor with the nurse and my doctor, who did a quick rerun of all the chemo drugs I will be taking, their side effects and the medication I should take for the side effects and finally the medications for the side effects of the medication for the side effects. I will learn.

A big disappointment was the fact that I have shrunk, so it seems. My passport says I am 1.73 m and so I have believed for years. According to the measurement they took today, I am barely 1.70 m. This really is not good for my BMI index.

The infusion centre is on the fifth floor and consists of several rooms with lazy boy type chairs, six to a room and a chair for a guest. The busiest hours are between 9 and 2, which is why there was - yet again- a bit of a wait. When you get allocated a chair, the nurse - mine was Irish, they keep popping up everywhere in this city - look for a good vein on your hand to put the i.v. in and get you started with an anti-nausea medication, followed by another anti-nausea medication, which is actually a steroid which explains why I am feeling a little wired. The first chemo drug -A - is bright red and a so called push drug, meaning it has to be pushed in by hand. They have to make sure it goes through the vein, because if it misses your muscles and skin could be permanently damaged; nice detail. This takes about twenty minutes. The second chemo drug - C -comes from a drip and takes about an hour. A flu shot on the way out and I was done. Allard came with me in the morning and Isabelle sat with me in the afternoon. By the end of the treatment I am sure Isabelle will be able to watch the injections without looking away, much to the amusement of the other patients. A good conversation starter though.

And now I am waiting, a little pale, with my four bottles of pills, two in each hand, for the slightest hint of nausea.

Will keep you posted.

Love, S1

friday night's delight

Dear sisters,

Complain as we might about living in the Low Countries (everyone does it, it is a local sport here) there are times that you can feel immensely lucky to be here in this space and time.

(photo: dick sanderman)

Yesterday a special treat for my ears: I decided to go to the polyphonic concert at Grimbergen Abbey by the Huelgas ensemble. Sheer bliss: the singers were singing in a circle on a platform in the middle of the cross formation made by the architecture of the church; the audience members were sitting in the cruciform directions around this centre, and the conductor moved around with the singers after every three or four songs so that each audience member would have the full panorama of acoustic experience. The singers, as soon as they came on stage, in their concentration, stopped being ordinary people, and instead became performers. It was like a silent ritual brought on by the concentration needed to sing these pieces. Every chord the voices made that dropped into silence resonated for a while and made the cavernous space more palpable.

It takes a while sometimes for your ears to open up. When it happened my ears started buzzing with delight. It was like I was constantly feeling different textures in my ears, going from the pale green to the very bright white. It was music by Jacobus de Kerle, a Belgian polyphony composer (born in Ipres and d. Prague in 1591) and it was performed in a building and formation it would have been composed for. After the concert an exhibition opening: Cesare Pietroiuisti was present: if you stared at his gold leaf drawing for 3 minutes and 30 seconds, you could have it. The 20 euro notes that you could have if you looked at them for 14 minutes (7 minutes each side) were already gone when we arrived; I am sure some of them ended up in the dish with sulphuric acid in which the artist molested any twenty euro note you handed him; only to return it to you, faded, with a certificate stating it is a work of art, in a folder..

These things make me think of concentration, beauty and silence.

There was a satisfying work by Marcel Broodthaers comprised of designs for a museum on a desert island to be built on the Rhine close to the Lorelei… a very beautiful idea…just think what that would mean for visitors’ numbers….and Guillaume Bijl presented his Souvenirs of the 20th Century; a hilarious yet carefully assembled collection of objects chosen to relate to celebrities. He has a deranged sense of composition which he imbues with his sense of farce and the ridiculous..
And here for your predilection, for something totally different, I present to you Angie Reed, who is very cool. Read more on the myspace bio part or visit her website. I particularly like the song “Habibi”…
love to you from me!
Sister two.

rats roll across the pavement here

Rainbow greetings to all from the wild east ! It has only taken me 17 days to settle back into my little nest. After a twelve hour bus drive with one Yetti, one plastic box filled with chilli con carne a la mama and having the whole five back seats to myself to lie out on i can only say it was a luxury ride. We were greeted by Prague orange skies in the early morning and it was rather lovely. I then dashed off to my flat to find that all my plants were still alive thanks to my flatmate, but i had no time to small chat as i had to rush off to a little village 20 km from Prague to do a puppetshow in a breadbox (ofcourse) with my accordeon musician friend theatre partner. It was a sunny and warm day and we were greeted by lots of green trees, dancing celtic ladies, sausages, ceramicstands, traditional blown glasses, woodcarvers,beer and more musicians.We huddled into a little tent that was meant only for all the performing artists to prepare and as my accordeon player was unscrewing his instrument to deblock some chords i was eating a fresh figue from Turkey that he had given me and then also some belgian chocolate which i had given him. It was a good exchange and soon enough we were out of the tent and ready to go onto the little grass to do our thing but the organizer put a microphone into my hands and i started speaking very loud czech ( i think that was the loudest i have ever spoken in this language !)
The show went well , despite my two month absence from speaking czech, thankfully my musician was there who saved me a few times with a few words, cheers ! We then went with the flow, got our pay for the day and went to drink a beer in the shade of a tree where there were lots of kids climbing in it from all sides, it really did look like the tree of life. We met some other nice musicians and spent the afternoon in sunny indian summer bliss.
When we got back to the city we went our seperate ways and i went to meet some other goodfriends and was spoilt to a delicious evening meal, we caught up on summerstories and had a lovely evning,Eventhough i was extremely tired from the whole travel and day i still decided to go and meet some other friends at a party somewere in the outskirts of Praha and there i was , completely pooped surrounded by all these czech people singing beutiful folk songs with a violin , guitar, accordeon, cello and flute. I hardly knew anyone but that didnt matter and there was a fire going as well in a little container in the middle of everyone.And there were lots of pear and apple trees around us.
Somehow i got back home and it was already sunday and it was again sunny and i relaxed in ultimate style, strolling through sunday streets of Prague and having lunch with Yetti under sun shady trees. We ended the day with friends, cheese, wine and watched the film "24 hour Party people " which was quite amusing and a few Allen Partridge sketches.
The next day i went to enroll in my brand new school and for some strange reason i had a million butterfliies in my stomach.Yes i was nervous , but it went well , we had to sit in this strange wooden aula where the seats and tables are stuck together in a staircase architecture. All the teachers then went on to say important things like how to extinguish a fire and the differences between the different ones. I also learnt that i had to enroll in atleast one sport and could choose between swimming, basketball, running , gymnastics, hockey or volleyball. I chose basketball reminiscant of my youth but then i remembered how the fingers can sometimes be put into danger with this sport, and my hands will be my tool for the next six years! ( i hope longer too )
After that we went to meet our personal tutors and we sat in the sunshine cracking walnuts open with a little hammer and eating them talking of what we would be doing as work up until christmas. Apperently we will have an egyptian week but im not sure if i should take this literally and turn up next week wrapped up in bandages. Or maybe i could wrap up my paintings...mmmmm i will have to ponder about this a bit longer. In any case the day passed very fast and i was quite tired from all the nerves.But no time to waste, I rushed home to prepare to go to the Slovakian high Tatras ( thats mountains for you and me ) with one Yetti, sleepingbag, tent, knife, food and lots of courage to face the wild bears.
We had one week before the shool really started so we thought we would enjoy the last of the indian summer and the light was amazing as we travelled by train at midnight arriving early morning to the pale yet bright mountains shining.
I was slightly taken aback at how beautiful it was ! pale pinks and light oranges and soft lime greens
We walked around the mountain village and found a good wooden pub where they served brilliant Slovakian food and we stayed there three hours preparing ourselves mentally and physically for our long treck through the high Tatras.
Eventually we rolled out and caught a bus through breathtaking green views and got off and started to walk.
And we walked for three days up and down along foresty hills , then rocky pebbles and the air was really fresh and clean
and wherever you looked there were amazing colours. The moss growing on the back and blue rocks was electric salamander green ! And there was a deep green of the forests around us with an occasional bright red tree sticking out like a light house.
Yellows and oranges and purple flowers everywhere. After sleeping in our little tent in freezing temperatures amongst the mountains and forest bears( i heard them growling in the we reached our highest point which was 1984 metres ! and it was brilliant ! We then slowly descended to a magic lake which was a dark turqouise colour and i thought of you all as we sat at the edge amongst the red trees. It had something of Japan yet still it felt very unigue to Slovakia. This is a country i would definately want to return to. I reccomend it to you all !
On the way back to Czechistan we stopped off at Yettis birthplace and met up with the oldies, friends and family and went for yet again breathtaking walks through very windy hills and after two hours we arrived at his local pub ( thats what they call a short walk! ) Anyway i warmed myself up with some local liquors and after singing and chatting we ended up in the local disco and there they played the song by Karel Gott that i posted before and i swear we were King and Queen of disco !
I wish you could have seen me, I made yet another complete fool of myself but i had fun.
The next day we went cycling but being a lowland native i found it quite challenging to get up the steep steep eastern hills.
I grumbled a bit but when the road went down hill i enjoyed it thoroughly, weeeeeeee ! I felt like i was paragliding through air. And then we really did have to go back to the city of Prague to prepare for the official school inauguration
which is a story in itself :
we were told to come dressed smartly and there i entered the main room where all the important people and professors were sitting on a sort of podium with golden chains hanging round their necks and then the national czech anthem started playing from big loudspeakers and everyone stood up so i did too and then after the tune we sat down and the director read out from a paper that we promise to be good and faithfull students and promise to work hard and then one by one they read out our names and we had to go to the front and place our right hand in the peace shape infront of this large golden staff that had a golden ball with a lion on top of it and say " i promise "
I was a bit dazzled by all the gold and i think i stood there a bit too long as the guy holding the staff said i could go now, so i went to shake hands with the director and he told me "congratulations" and gave me my student book identity called an index, then i had to sign something and then i was told i could sit down. And that was it ! All those nerves for that, oh and i think i blushed a bit as well just to add a bit of colour to the whole event.
Now i must get some beauty sleep as i start drawing life model at nine tomorrow morning. Oh and the rat thing happened yesterday in my street as i was walking along a little rat crossed my path and did a rolley polley infront of my eyes, amazing ! I send you both lots of love. Will write soon! Hugs and mountain courage! Peace sistar Three

Conversation with cab driver

(With a heavy East European accent):

- This is country music. Do you like country music?

- Uh, yes, it can be good.

- yes, yes.

Chemo lesson

New words in my vocabularly:

Adriamycin (Doxoburicin)
Cyclophosphamide (Cytoxan)
Ondansetron (Zofran)
Prochlorperazine (Compazine)
Lorazepam (Ativan)
Aprepitant (Emend)
Dexamethasone (Decadron)

I start next Tuesday with my chemotherapy and was given a lesson in chemotherapy today. It was an informative event.

The first two names on the list are the chemotherapy drugs -"AC" as they are fondly known together. I will be receiving those for the first four sessions. The last five are the anti-nausea drugs I will be taking in various combinations, depending on how I react to the drugs. I will spare you the two pages of possible side effects we went through.

Tomorrow a PET scan and then some wig shopping.
New York? I can't recall.

S1

NEW YORK

Dear sisters,

I will not bore you with how much I love this city. Yes, I will bore you with how much I love this city. I love this city. An honest attempt is made to run you over in this city.

But you know all this.

Unfortunately I have been and am now back. For four days and three nights, I did not think about hospitals. My old but still so beautiful friends, Dagmar and Juliette, flew in from Amsterdam. We shared a corner room on the 16th floor, with glass on two sides, on the Lower East Side. We could have stayed in the room all weekend and watched the view as the sun came up and the sun went down, and been perfectly happy.



Up



Down

That is different to the hotel A. and I had the first time we came to NYC to visit you S2. You had so kindly booked a room for us, somewhere on Broome street if I recall correctly. The room was good, huge by NY standards. With a nice enough view of a wall. And that for $50. (a long time ago.) It was the very pale, stone faced receptionist sitting behind bars that got to us after a while. She did not smile once, although we did our best. It was scaaarry.

No stony faced receptionists at our boutique hotel this weekend. We also did not pay $50 a night.

We did eventually venture out onto the streets, after we had decided which sensible shoes to wear.




We did the art bit, saw a movie, shopped ourselves into a zombie like state, and had ourselves taken care of, but most importantly we just talked within arms length distance of one another.



We did not engage in NY night life much, this time, but made plans for later. First more babies and less cancer (me).



On the way home I listened to the voicemail from the hospital confirming my appointments for the coming months. Chemo starts next Tuesday.


Love, S1