Mixed feelings

Last week was a roller-coaster ride. I was up and down on the emotional ladder. It was a week filled with a lot of bad news, on the other hand it was also a week of celebration. I turned 40, a target I couldn't even dream of last year. But I also had radiation therapy on monday, and heard from the orthopedic surgeon that the tumor in my arm is so big that he couldn't even do a joint replacement as there would be nothing to attach it to. Hospital calls are starting to frighten me and as time moves along it is becoming harder and harder to drag myself into the physician's office. On the lighter side of life, I have plunged into an ACST revival mode. ACST was my school in
Tunis, Tunisia and apparently there is going to be a reunion next year. It has been really exciting getting in touch with old, dear friends. It is delightful to see what life has brought everybody. It has become a new incentive for me to keep fighting, I have to be healthy enough to travel next year. Thank you everyone for latching on, I never forgot all of you throughout the years. How precious can one's youth be. Being able to look back in glee is a treasure in itself.

Then there was my birthday! I had not planned anything yet as I intend to hold a Feest for Life party somewhere in November. Mom and Ineke managed to convince me that I could not let my birthday pass without celebrating now. I ended up meeting up with my Hilversum friends in town for some coffee, tea and snacks. That evening a small portion of the family went to have a chinese wok dinner. Thank you for the endless amount of phone-calls e-mails and tekst messages! It took me over 2 hours to respond to all of them and I am not finished yet!

This week, Tuesday, I will have my meeting with Dr. Lips to talk about my further treatment. I will keep you posted.

The big dip

This week has been a horrible one. I finally had my meeting at AVL with Dr. De Boer. I was hoping he would take over the coordination of my treatment.

As we sat there it soon became apparant that I was going to have to do with Lips and the VU hospital. Dr. the Boer found a way to tell me up to 5 times that there was nothing he could do for me anymore. In actual fact he told me nothing new but his intention was to get through to me and he did. As he did this I felt my control on life slip away. This was the very first time that I broke down crying in the hospital. There is only one thought that runs through your head at that time...and that thought is: "What about Kiara? She needs me in her life"! Losing me is simply not an option. Marcus, as always, supported me through those horrible hours. We had a drink and he insisted that I made an appointment with Dr. Van Triest, the radiologist to get me back on track.

She actually made time straight away and her approach was fantastic. I have now been scheduled for radiation therapy for my shoulder again on Monday. My shoulder is a wreck at the moment, so I am happy something is being done to it.

When I got home, a minor situation made me blow up. I ended up throwing jacket potatoes around my kitchen in a rage. Luckily nothing broke....but my arm is disfunctional for at least 2 weeks now. The last time I turned aggressive was August 19, last year. I suppose that a yearly outburst isn't too bad considering my situation, so I have decided to pardon myself for it.

I turn 40 on Wednesday. What a special birthday! Last year I didn't have a clue if I would be around now. I hope to reach many more. I am not holding open house on wednesday as I will be off doing other things. I will be throwing a party somewhere in the fall when everybody is back. You will hear about that later!

Socializing more

The last two weeks or so have been pretty action packed. Not so long ago, meeting with friends was an energy consuming activity. Not only do I have to get myself to the place where we decide to meet. Simply trying to concentrate on the conversation is difficult. Infact the physical aspect of going places is becoming easier each month which on a whole makes me feel like there is some improvement in my physical state.

With Kiara away for a two weeks I found the time to make my little tour d'amis. I started by visiting Rachelle and the kids and particularly my God child, Valentijn, after having had lunch at Warchild . It was nice touching ground with everyone.

Later on that week I went to Bloemendaal aan zee near Haarlem. A beach that generates alot of human traffic. I went there to meet Frank and Bernadette. Counting back the years, I have known Frank since 1986 which is now already 22 years. We met at Woodstock which was once beach bar of the year; a neo-hippy culture which was a nice quiet place to meet on a very rainy day. Unfortunately I forgot my camera so no pics of that! Only a 50 odd yards away, Marc was doing recordings for his video. Before we knew it we were watching a hiddeous fashion show. A rainy day like that can bring you lots of suprises! We ended up having dinner in a restaurant in Haarlem.

A couple of days later I went to London for just one day to meet my friend Jocelyn, her baby Zara and brother Anthony. Jocelyn was over for just one day and I figured that by flying back the same day I would at least be able to sleep in my own bed. I had a wonderful day with a price to pay. The next two days I had to hang low to recharge my furnace. Thank you Jocelyn for a fantastic day. What cancer has taught me is not to procrastinate. In the past I would never have gone to London for the day. But what is more important that meeting the friends we treasure the most. I have known Jocelyn since I was 7 years old. We met in Tunisia while both our fathers were posted there. Unfortunately my flight back was delayed by an hour. That just about put me out. Oh well, Carpe Diem!

So, how am I? Well, I believe that despite all the bad figures, I am doing pretty good. My strength is still improving after a year, and I am actually starting to worry about my extra pounds, which is a topic that seems really trivial when you have cancer. I am in no man's land as far as treatment is concerned, but I hope to turn that around on Wednesday when I finally have my meeting with Dr. de Boer at the AVL hospital. Kiara came home today and is starting school in the morning, this means that I am back on my daily, energy burning regime. Having to wake up at 6.30 each morning is tough and I wonder how I have managed to keep that up the past few years. The mornings are the most painful. I suppose I will managed.

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.