Queen's day

Today is Queen's day in Holland. A national holiday to celebrate the Queen mother's birthday. Everyone gets a day off and The whole country turns into a free market. We too got up early and went to Laren to sell our junk. It was hard work getting there, but Myriam and Jacqueline helped me with my stuff.
There we stood, 3 moms and 4 kids, selling old toys and other stuff we no longer need. We didn't sell extremely well like we did in Amsterdam 2 years ago, but the mere fact that I was able to do this was kinda cool. Each kid made about 10 euro's and it was a perfect opportunity to clean the attic up. It is now half past three in the afternoon. I am pooped, so I will have a sleep before I head out to Purmerend where Marcus is singing with Dutch rappers Lange Frans en Baas B. (Watch the video on AT5 of the release party we attended).

Assen Superbikes races

This weekend, finally, after a long wait since November, we headed off to Assen where the superbikes races were to be held. We booked a nice hotel to be able to see the races both days without having to drive all the way home again. Assen is a 2 hour drive which for me is very strenuous. Marc invited his friend Roberto and his girlfriend Elsa along too.

Getting ready was hard enough for me. When we were finally on our way there was a traffic jam in Baarn, only 5 miles from here. This is where my luck ran out for the rest of the weekend. I was in a foul mood too which did not help. The stress of the last week just was too much to handle. Especially all those people telling me I looked good or asking me if I was better yet, they really got to me. After a long drive Kiara and I arrived in Zuidlaren where the hotel was. I had specifically chosen this hotel so the kids

could have a swim. We soon found out there was no swimming pool, that really ticked me off! You see, there were hotels nearer to the circuit which were alot cheaper. We got settled in and drove to the race.

There were supposed to be facilities voor invalids.

Well, this became an endeavor which turned into a nightmare! We were sent by one official to the next. Not being able to reach the track. This was so aggrevating! After 2 hours on the road, you really

want to reach your destination. The answer was to disobey every single one of them. Finally we parked right near the gate. Our fun was already spoilt so we tried to pick ourselves up. The rest of the afternoon was OK though I noticed that this was an activity that was really not within my reach.

That night we had dinner at a Chinese restaurant, which was far from Chinese. After being showered by orange juice which the waitress dropped on me we had to wait forever for our meals to be served up. When it finally came, everyone thought it was delicious. They must have been starved. That is my opinion. ;-). By this time I was starting to feel like a real whiner. Luckily, the hotel rooms were very nice and it seemed like we had the best rooms in the house. All the stress of the day resulted in an anxious evening. I have those every once in a while.

On the second day, we were prepared for the hardships of being a paria. Even so, the hard-headedness of the officials nearly had me irritated enough to go home instead of watching the races.

After having been sent on a site seeing tour of 38kms rather than showing me where to park, I tried again, this time without stopping for the officials. I made my way to the front of the parking lot where I was able to park. After Marc picked me up with the wheelchair we were set for a nice afternoon. The rest of the day was worth it. We were there just in time for the first superbike race, and left after the second one. Marcus' favorite driver won both races. Leaving early allowed us to get out of there before the major traffic jams. Well that was that! Life for me is all about trying things. What can I and what can I not handle. Luckily, up to now, I think about 8 out of 10 things do work out. Some things do not. Next year, I will not go to the race. The town of Zuid-Laren, however is really rather quaint and I would recomend people to go and have a look there. Kiara and I secretly got a sneak-peak at the statue of a man selling a horse and the Hunebedden.

Berend Botje ging uit varen

Met zijn scheepje naar Zuidlaren

De weg was recht, de weg was krom

Nooit kwam Berend Botje weerom

Een twee drie vier vijf zes zeven

Waar is Berend Botje gebleven?

Hij is niet hier, hij is niet daar

Hij is naar Amerika

Amerika, Amerika

Driemaal in de rondte van je hopsasa!

Dutch tradional song.

Numbers don't lie

Yesterday I was back at the VU hospital for my test results. The Thyroglobulin count has actually gone up to 4340 from 2601. A sign that the amount of cancer cells has actually increased. This is bad news as the Iodine treatment should actually be bringing this number down. A quick analysis of what is going on is that the Iodine is working but that during the periods in between the treatments the cancer is actually finding a way to grow. The trouble is that the Iodine treaments can not be given more frequently as this could cause further damage in my body. The largest tumor is in my head, so we are looking into a possible operation (craniotomy). I had also had an MRI scan made of my shoulder. A tumor in the bone of my right shoulder joint has emerged. I have requested radiation therapy for that.
I believe that if we can get to the tumor in my head, it will be easier to manage the growth. I am now waiting for an appointment with the neuro-surgeon.
This actually a new loss to deal with. I am trying to keep my cool and take things one thing at a time. As things are, the May school break lies ahead. I will just concentrate on that for now.

Flower Power

You know how when you live in a country you never bother to visit the local sites?
How you always think, "Well, that's next door, so I can go anytime"!
The availability of the attraction conceals its originality and in the end you never become the eye-witness to the Earth's tiny treasures. Such was the case with the Keukenhof, Holland's floral exposition of World fame for me. People come from all corners of the World to see it. I have been living in Holland since 1987. Twenty-one whole years, eighteen of which, less than an hour away from the Keukenhof. Up to today I had never visited it.

It so happens that Marcus who grew up in Amsterdam, less than half an hour away, had never been there either. We decided to go there. Armed with Sunglasses, my Quickie (which Marcus calls my Chicky) wheelchair, and camera's we made our way over to Lisse, the village where Keukenhof is situated.

The weather was beautiful as a hint of summer was in the air. Finally, the Sun has been showing its face, but it has not been warm at all. Infact, the evenings are very cold for this time of the year!



The park was beautiful and certainly worth-while seeing. The size of the park was just right though the variation of flowers was a little disappointing. It was a great day out. Everything actually felt quite normal!

Happy Bird Day!

Yesterday, precisely 1 year ago, I was told that I have cancer. Once again the days coming up to the anniversary were hard. I spent the day going to the dentist and getting my shoulder scanned. Getting scanned brought back memories of my very first scan. It was this picture that was shown to me when I was first informed about the tumor.

At that point it wasn't clear to me yet that that was just one of many tumors, but I do know that in a split second I decided to not let it get the better of me. From a prognosis of 2 to 3 months, to now 10 years, is a magnificant improvement. Though it is inevitable that this illness will most probably lead to my death at some point or other, It has become clear to me that beating the odds is not impossible.

So how did I feel yesterday? I have to say that it was not as hard as March 17, when a year had passed since I broke my back. What came to mind mostly was the pain involved in having to tell my family and especially Kiara.

This is a good time to thank family and friends, in particular my parents, my siblings and their spouses, my nephews and neice, Jacqueline, Tineke and Henk, Saskia and Henk, Ineke, Myrugia, Rachelle, Jocelyn and Matt, Dr. Scott, Myriam, Gert-Jan, Tirzah, Carla and Henk (Henk is a common name in Holland!), Nanette, Hugo, Anita, Willemijn, Collin. Basisschool 't Kruispunt, Trappenberg and all of you who have helped out throughout the year. And then there are all of you out there from Pricewaterhouse Coopers,Tunis, Rosemead and the rest of the UK-clan, the USA, Surinam, Venezuela, Afghanistan, Greece, etc. etc. who have given me their continued support.

Since starting my weblog it has been visited 5115 times by friends and family in 27 countries. Please keep saying all your prayers you Jews, Christians, Muslims, and non believers...as your transcendant energy is working miracles!

In particular, thank you to Kiara and Marcus, your patience and selfless love keeps my heart ticking everyday. You bring me so much joy!












And now...off to year number 2!

A capital case

In one week's (April 17) time I will have survived cancer for 1 year. Time does fly. Do I subtract that year from my prognosis? I think not! As long as I keep feeling OK I have not started counting down yet. A full year does call for an evaluation, such as the bodyscan that was made last month and my request to be given a prognosis. I have therefore taken the time to take a good and detailed look at the scans made since december. In this picture of my head, for instance, you can see the tumor on my head. The bump being fluid which they think has accumulated there because of the irritation in the bone. What a precarious place to have a tumor! Our fear has been the possible infiltration of cancer cells throughout my brain. When I say 'our' I mean friends and family. Instead,the doctors are only worried about the pressure on my brain in a rather 'lucky' area, as too much pressure in that area would give me balancing problems rather than other complications. As a matter of fact, when I was in the hospital, this WAS actually a problem which seems to have diminished. We have been watching this area but it seems to be stable.
The last 2 weeks I have a feeling that the treatment is getting to it. The bump has decreased and I am sure that new bone tissue is developping in the area. How do I know this? After the 2nd treatment when I scratched my head near the tumor, I could hear a hollow sound. When I scratched elsewhere on my head the sound was different. The area producing a hollow sound is now much smaller! I have deduced that the porousity of this area must be deminishing, thanks to bloody Bonviva and Calcichew D.
The bonescan has given much clarity about the effected areas. WIFIWIG (What I feel is what I get)! Good old intuition! Speaking of intuition...apart from the bump on my head, it seems like I am still improving in other areas. I have gained just a little confidence.
Two weeks ago I finally joined a discussion group. It was horrible because I don't seem to have any real peers. All the other patients had the cancer found in either a preliminary stage (near the thyroid) or with one metastase. I have stopped counting at 10. There is actually no-one going through the same thing. I suppose Gerritsen knew what he was talking about when he said they had never had a case like me before. To think that the last few years I thought I was feable! How silly of me!

They can't keep a good man down

Always keep a smile when they want me to frown

Keep the vibes and they stood my grounds

They will never ever crown

Who Jah bless I say no man curse

Things gettin' better when they thought it would be worse

Here comes the officers askin' for a search, they found no weapon just a only draw

Cause I'm so solid as a rock they just can't stop me now

Even when they set up there traps they just can't stop me now

People will say this and that they just can't stop me now

Even when they set up road blocks they just can't stop me now

Sizla

Back-lagging and adjustments

I have received a few complaints from readers that the frequency of placing new posts is of some concern to them. I think that they got the right idea if they thought that I might be cocooning somewhat. Infact, despite my progress, the last 2 or 3 months have been the hardest. As I try to get adjusted to life again I am confronted with the moment when my life actually stopped on a daily basis. It was much earlier than I realized. Working through my back-lagging administration so much becomes evident. No wonder I kept procrastinating the last couple of weeks. 2 weeks ago Aldith, my sister helped me start up, by filing all my papers in the attic room, as I tried to clean up the mess that had accumulated in my storage area. These 2 days were more or less a rite of passage. Each piece of paper that passes through your hands reminds you of what happened, what you missed, and what you were unable to keep up with. Scattered amoungst the papers we occasionally came across photographs, many of which were taken in the period of my depression or after my divorce, a period well documented. But as far as my memory goes, flashes come back to me...like watching a movie...but the memories seem so distant to me, as if I am looking at someone else's life. Remote because, even then I wasn't able to really feel. In retrospect it seems that my history of depressions (since I was 15 years old) must have been caused by the malfunctioning of my thyroid gland. What I don't understand is that my thyroid gland was tested at least 5 times throughout the years, but nothing was found.

So anyway, I am in the middle of getting my life back in order, which is a strenuous endeavor. Years ago I was able to pick a weekend and work though my stuff non-stop. Life has changed. I need to spread the tasks and work on them a few minutes at a time. A procedure that takes days to complete. I have almost reached my goal. I expect that I will need another week or so.

In the mean time, life goes on, and it is such a pleasure to see Kiara growing up.