Down-time

Autumn has really set in. The beautiful red leaves have brutally been blown off the trees and we have had quite a few wind storms. Christmas is approaching and the days are dark and gloomy. I hate the approaching winter and am craving a little sunshine. I have to make do with my daylight lamp, I'm afraid. Kiara's musical has been rather energy consuming, to say the least. But what a wonderful time she had. It was worth every effort to see her shine like that. She has 4 more shows to go this year and will get one of the girls roles after Christmas. Frankly, I hope that she won't be quite as busy the next 3 months. In the meantime, I am on a roller-coaster ride trying to find a way to deal with the Nexafar/Sorafenib. Currently I am off the cure for a short while. I got so sick at one point, that I needed my intestines checked. I decided to stop until the coloscopie. I was off the Nexavar for 2 weeks when I started my Kleenprep...which is actually a Barium solution that totally cleans out your bowels. I wasn't allowed to eat for a whole day. The worst part was actually the stress. Colon cancer does occur in my family, and I had been bleeding for a few months. I had also been struck by severe colon cramps the past few weeks. I was litteraly worried sick. I got tired, pale, and on the morning of the test I had a bloodpressure of 160/116. This is the first time that I got this worked up about a test. I couldn't face a new form of cancer.

Mom came to stay with me and on a monday morning we drove to Amsterdam. They put in in a mild state of sleep and carried out the -not so comfortable- test. I was able to follow everything on a screen and couldn't see anything. I had to wait at least an hour for the results. My intestines were clean! The bleading was something to look at though. The pain department has cut down my dose of painkillers. This does mean that I am in more pain. The last weeks I have actually been feeling awful. I have been extremely tired, my whole body hurt, I have had hot flashes and basically, I have been feeling subdued and anxious. I have dark rings under my eyes and have lost my hair as well. People still tell my I look great, while I am coming to terms with my new headpieces Roslyn and Halle. Every day on the news there is someone dying of cancer. What happened? So many people and so many young ones too. It gets harder and harder to watch. I particularily felt bad when Patrick Swayze died. He seemed to keep up the same spirit as I do and he still died. I don't work with prognoses. They are seldom correct. I do have my own vitality meter though. (Intuition) The readings have been lower than I would like them to be.

I still don't know if the Nexavar is working. I will have to take it until januari at least to know the effect. In the meantime, I have stopped so often and have not had my Iodine treatment.

Last week the pain in my body concentrated in one area as I had started to take my pain medication again. It was the rib on the left hand side again.

This week I went to Van Triest at the AVL. It was really comforting to hear that the last radiation session on the ribs, they actually targeted another rib. This can happen as it is not always clear exactly where the problem is. I had radiationtherapy on the area that I was actually experiencing pain in.

Already, the pain has died down in comparison to last week. I had worried about the last session not working...it was in the wrong place.

Little succeses like this, do make me feel a little better.

For now, I am resting alot. I have almost finished rehab. Just one week to go. I can walk very short distances without my crutches! I believe that those distances will increase. The bottom line is that overall I am still improving and beating the odds. I hope to make a mental leap the next months by focussing on what to do with the rest of my life.

The general

A few years back, ...infact it's 10 years back my colleagues called me the General. I hated it at the time because they singled me out of a whole group of event organisers, each and everyone equally hands-on and bossy. Well the general is back! Illness does not only effect yourself, it also effects the people around you. One example is my mother. She has been here for me more than once for at least 2 months at a time.























After her own back problems 5 years ago her life too, came to a screaching halt when I got sick. That and several other reasons resulted in her putting off the renovation of her study. This past summer she mentioned to me that a make-over of her study was a huge wish of hers. I set up the Pimp Granny's Den operation, with my siblings, nephews and neices and my auntie Tirza. I did the co-ordination from my bed (and 2 short trips to Zevenaar) and the others worked in shifts. Yesterday we all went to Zevenaar to finish off the job. It was done in a jiffy, and Granny's Den looks superb! Anyone need an interior designer? ;-)

luctor et emergo

Which is latin for ‘I struggle and emerge’ seems to be the correct description of my life at the moment. After starting the cure again it is now the 3rd time that I stop for a few days. Despite the fact that I have lost most of my hair, I seem to be doing OK. I managed to get through the past 10 days or so which have been crazily busy. Kiara had her première in the Royal Carré theater last week on Saturday the 25th of October. It was a huge bash with many famous Dutch politicians and celebs. Kiara and I spent almost the whole day getting ready. It was Kiara's moment to shimmer and shine. I bought her a Gala dress through this nifty online store. A lady in Nijmegen buys second hand dresses from oil sheiks in Saudie Arabia and resells them in Holland at a reasonable price. We kept it a secret until the special day and the added tiara completed the look entirely. I took my dress out of the storage. A dress that I used to wear when I was working at the AVRO on special evenings. In the evening we met up with all the kids and their parents at the town hall in Amsterdam and the kids were given red carpet instructions by...guess who! It payed off as you can see.

Aldith had joined us that evening. She has been helping me out tremendously with Kiara's transportation. It was great for the three of us to be out that evening. Kiara did not have to perform that evening. First it seemed like a disapointment to her, but after a while she noticed that there were benefits. The kids working that night missed a large part of the party.

It was a wonderful show and also the first time Kiara saw it herself. People were dancing and singing in the crowd. Meanwhile the Dutch television was transmitting a live report. Before that, a fragment of one of Kiara's shows was on the News. The evening ended with a huge party. The next day Kiara had to perform. We had a wonderful time. I have to say though that it is rather demanding to do all of this during chemotherapy. However...the energy that it generates is tremendous. It's not back to normal yet. Kiara still has 12 shows to go this year. It is amazing how well she does in school.