A short get-away.

With a Kiara away from home, and tired of running in and out of hospitals, Marcus and I decided to get away from the havoc for two days.
I booked a night in De Koperen Hoogte, a hotel that was built in an old water tower.
It was a short drive so I wasn't too exhausted when arrived there. After checking in we had to wait a while until our room was ready so we drove into the Calvinistic town of Staphorst. It was time for lunch so we settled into a café. I was suprised at all the glum faces, which started me laughing. Each new face I looked at was a little bit worse, but by the time I was finished looking at every one I was in hysterics, laughing so much that tears poured over my cheeks! It was miserable weather. The place turned dark and water gushed out of the sky. But when we were finished eating the sun came out again. We made a small tour of the area including the Ten Cate motorbike shop. While we were driving around the area I recognized the scenery; it looked like the place where I stayed at summer pony camp when I was 10 and 11 years old. Low and behold, only about two miles further on we drove past the farm. I couldn't believe that I had recognized it after 30 years!

After our tour we checked out the shops in the hotel. They were quiet nice and n0t too expensive. No purchases this time! Instead we went to settle into our very luxurious room.

Dinner was at the top of the tower in a rotating restaurant. The food was good. Then we had some coffee on the terras downstairs overlooking the private lake.

The next day we toured the area, visiting Zwolle and Kampen. It felt like a real holiday. We should get away more often.

Time flies

Wow, life is moving along at a very fast pace. Time is passing by so quickly that I am hardly able to keep up with the facts. I suppose the easiest thing is to sum up the highlights.

Monday was pretty much a normal day. I attended work and rested the rest of the day.

Tuesday I paid a visit to the VU hospital's nuclear department where I had a shot to test if the Octreotide treatment is an option for me.

Wednesday I had a scan to check the outcome of the test. The test proved to be very positive. This is good news as it means that this, more experimental treatment, is an option for me and will hopefully substitute of be administered in addition to the Iodine treatment. This treatment works in a similar way to the Iodine treatment and is used mainly for cancer of the intestines. Dr. Lips will try to get me into the programme in Rotterdam now. -Hair begins to fall out.

Thurday I had a few chores lined up. I had the plumber over, the Car Glass man and I also waited for Kiara's new cupboard which did not arrive. The deliverer called me to let me know that it would be delivered Friday. In the afternoon I joined Marcus in Amsterdam and we did a little shopping. I also went to the lab for a bloodsample for the evaluation of the Iodine treatment. - A hand full of hair in the morning.

On Friday I waited for Kiara's cupboard. I took the occasion to tidy up her room as she is away with her father now. I also made an overview of my tumors in preparation of my meeting with the new doctor in the AVL later next month. To my shock, there are and have been 28 areas in my body where tumors have spread to. This wonderful excel-sheet should offer some insight.

I had lunch with my cousin, Preciosa and saw her lovely son Björn for the first time. I had to hurry to the Pupils inspection as I had a meeting with the man that was going to decide if Kiara gets time off in September. Hip Hip Hurray! She does! so we will be off to Jamaica on the 24th of September. I haven't told her this time and won't do so until we are ready to leave. She has had too much disappointments to deal with. It wasn't easy to get her out...but I persevered and won. I didn't dare comb my hair that morning as I had a dinner date with Willemijn, Karlien and Dideke. I was sure it would all fall out.

I met them in Muiden in the Doelen, where we had a splendid meal, the company was excellent. My company that is (the ladies). I had no idea that I was being taken out so I was very suprise to hear that I was being treated. This gesture had some strings attached. Something about weddings?....- When I was home I combed my hair. I yielded two hands full. I am officialy bald. And seeing the bump now....well if my doctor had seen this a year ago he would have moved real quick. And to think that this has already deminished by at least two thirds.

I have deliberated about posting this photograph but it is part of my story and it would be incomplete if I did not add it.
On Saturday I went to Amsterdam to have my head shaved. I took the opportunity to check out the real hair wigs. I found one and picked it up monday after work. In the evening Sidney spent the night here. I made fish sticks from scratch with Pangasius fillet. I can really recommend that!

Sunday I splashed out and went shopping on my own in Almere-city. I did really good for little money. I finished the afternoon by treating myself to high-tea. Mmmm that was delicious. At night I got back to my chores and did my ironing. Boy do I hate ironing. Especially now, as it hurts my shoulder.

Today is monday. I went to work with Shakira and my co-workers made me feel really relaxed with my new look. Shakira is pretty warm so I was happy to be able to pick-up my other real hair wig. After a pedicure I went to my sister Angélique who was just back from her trip the the West Coast (USA). She and her husband Hugo have baptised my new wig; 'Candy'. Candy (as in Candy girl) isn't as long and as warm to wear as Shakira. It's nice to have an option!

Kiara turns 9

Kiara turned 9 years old last Saturday. Since I took ill, birthdays just aren't the same anymore. I thank God for every year that I can experience with Kiara. Time with your child is the most valuable thing in your life. The thought that haunts me the most is that I will not make it in the end and that I will have to leave such a young child behind, especially in our case, where she grew up without siblings or her dad in the house. I any case it was a real time of celebration. Last year I did not see Kiara on her birthday. She turned 8 years old in a summer camp while I was in the hospital. On Saturday when she woke up I gave her her presents. She was lucky this year as she was spoilt rotten. The family bought her a brand new BMX bike. She had many phone calls and cards. Thank you for that! In the afternoon we had a few kids over from the neighborhood come over to play. We didn't have the party yet, but I served poffertjes and we went to the ice-cream parlour in the afternoon. On or way there we picked up the Birthday cake. I used to make them myself but it is so much work that I decided to order one instead. This year''s theme was karting which is what we did on Sunday with a very select group of children. But before it was time to do that, Marc, the kids and I went to Nam Kee, a well known Chinese restaurant in Amsterdam.

On Sunday we headed to Utrecht to go Karting. I had found a pretty cool place called De Fabrique (the factory) where they catered to kids parties. I have to say that the service was excellent.

We had a really relaxed party, very different to the parties which we used to have in the woods with 25 odd children. Crazy! The kids got short course in karting by one of the employees,

a student that had not expected to work that day and had been out partying the night before. We were pleasantly suprised about his dedication.

After putting on their clothes the race started.

They were given their own secluded area to race in. Sidney was to small for the Karts so he was allowed to flag them.

The race took off to an exiting start.

Kiara and Dilara both stranded once.

Collin, our champion won of course.

But Kiara was awarded the medal as she was the birthday girl. After the race we headed for the restaurant where we were served fries, lemonade, and deep-fried goodies.

We topped it off with cake.

After the cake we were through. I brought the kids back to Hilversum and took Kiara and Dilara to Zevenaar to my parents. They stayed there two days. Wow what a party! Everything we had to miss last year was well made up for this year.

Hairloss versus wiggain

The inevitable has come into action. My hair is falling out in bunches for the third consecutive day. At the rate that this is happening, I will be bald in no time. The actual baldness doesn't bother me too much, but seeing that amount of hair fall out at once is kind of creepy. It is not actually a sign of vitality. This here is the harvest of a single day. I don't know where this will end. This event resulted in me going to the black-hair shop as I knew they sold wigs there. Wigs are big business and to get the right one you need to do a lot of fitting. I will also need a letter from my specialist to get my insurance to pay for it. I expect that will take another 3 months before I have that all arranged. So I have decide to buy an in between wig. I found the Tyra wig which looks pretty good on me. Imagine! Here's me going into the shop looking for a short Halle Berry style and subsequently leaving the shop with a long Tyra style. Anyway, the wig was as cheap as € 35 giving me a solution if the rest of my hair falls out over night. Thank God for China being a huge player on the World economic market. I love the way the box from Sleek had all the fashionista cities written on the side. In their view the places to be were London, Paris, Accra, Johannesburg and Lagos. They are definately targeting the black market, don't you think?

Kiara was at my mother's, so when she came home I made sure I had the wig on. To my suprise both of them and also Kiara's friend Dilara, liked the wig. I told Kiara we need to baptise the wig. She has named her Shakira! How about that! The hairstyle isn't exactly me, but it looks cute anyway. So, you had better get used to the temporary look. Looking forward to all the Tyra- (or Shakira-)mail!

Pear-size to grape-size

It's been a tiring week. I practically slept all weekend. I certainly needed that. Monday was the last day of the series of radiation therapy. The tumor seems to have reduced from a pear-size lump to a grape-size nodule. This is excellent news. Especially
as I am entering a new fase of treatments. Friday I got the bad news that the uptake of the Iodine submitted during treatment is deminishing. Normally this is supposed to be bad news. Taking all factors into account, we believe that the bad news is relative. It does offer me a chance to start with a new programme. I will be seeing Dr. Jan Smit of the LUMC (Leiden University Medical Centre) later this month. He is working on experimental treatment, a medication which is supposed to boost the Iodine treatment. Frankly I still feel like I am getting better all the time. I am happy to examine newer treatments though.

As I try to rest a little, Kiara has started a course in Sailing with her two friends Bo and Dilara. Luckily they are having heaps of fun! More news later this week.

Radiation therapy

So, I haven't been on here for a few days now trying to get accustomed to my new treatment. Last week I thought that my radiation therapy was supposed to start. In the frenzy in which I read the letter I overlooked that the first actual radiation session was a week later. I have problems focussing at times, but this time Marcus missed it too. The good part was that I asked my mother to come with me. This turned out to be a great support as having the mask fitted is not exactly fun either. It became apparent that my new choice of hospitals was already paying off. The efficiency was marvelous which made the whole procedure like clock-work.

I have now started with my series of radiation sessions to my head. (5x a dose of 4) This is a very high dose to the head but we seem to be skimming the brain and the higher the dosage the better.

Also, if more radation is needed a second series will not be a problem. Yesterday was the first day and I must say that I felt a little tense going there, as I do not like the idea of being fried alive. I was rather relaxed though as I made it a sport to not think about it until I was actually there. I noticed that Marcus was very tense though. I was happy that he came with me as he managed to get my mind off the whole process.

The actual therapy went by quickly. While the radiation is in process you can hear a buzzer. The first one scared me, but by the time I had the fifth one I was used to it already. I was happy to be able to take off the clausterphobic mask. It left tiny bumps on my face (from the mask pressing down hard)which disappeared rapidly. Though they tell you that you cannot feel anything, I have to say that I felt a burning sensation right where the tumor is. Good news, I suspect. I got through the night without too much pain, hardly any nausea, but feeling very winded. I will have to go easy the next couple of days.

Day two was easier with less pain. I am not supposed to notice anything yet, but honestly, the area of the tumor has already decreased. The height has increased though, as expected, due to the extra water retention. Usually results can only be noticed after about 2 weeks. We will see!

Out now

I just want to share with you that Marcus' first single 'Jij' is out now. You can listen to it here. You can also help Marcus get a hit by voting here.

Ready, set, go!

I thought that my first radiation session was to be held last monday. This was not the case, but all preparations have been made. I will be starting on the 8th of July and will have 13 sessions as far as they can tell now. These sessions will be held 5 times a week. I can feel the difference between the two hospitals already. To start with they are much more efficient in the AVL. This gives you the feeling that they know what they are doing. I can't wait to transfer all the treatments. Right now, I am feeling OK and very confident that this procedure will get me where I want to be.
This week, for the first time, I really enjoyed work. I think that my level of energy is pretty high. Who knows what I will be able to achieve in the near future? What ever the case, I am moving in the right direction.
This MRI is the most recent one taken in May.