Postponed Party

The princess' party was postponed, as when parents become patients the party is sure to be pooped. 21 july became 29 september, but we made it in the end! And that's what counts.

10 kids, a party of mostly boys, and 3 adults (my aunt Tirza, Gert-Jan and myself)headed for Snowworld in Zoetermeer for a snowboard party. Well call it a very expensive boarding arrangement as except for the lesson and the food there was not much entertaining or guidance on their end.

One wrong turn on the way there and putting on their boots took up so much time that half of their lesson was wasted. Snowworld is extremely commercial and not flexible at all. Even though there was no lesson after Kiara's, it was not possible to extend the lesson.

Fortunately Gert-Jan came to the rescue as he lead the troopers through the artificial snow, up the mound to come gliding down as original pro's. Check out my girl, she's looking pretty hot!

As for me, well I made it. A drive of an hour there and back. I'm improving every week. And happy to be able to do this.

Only a while back I could not have even know that I would even walk again. I believe that that was less than 2 months ago.

Anyway, I am happy that this party actually did take place in the end as Kiara did not want to go ahead with it with me in the hospital. I have to say that despite the rugged choice of activities Kiara picks her friends well. Our boys and girls were all very well mannered and civilized! Who's complaining about our youth?

Beddy-byes

The bed is exit! I had had it with the bed. It was a huge obstacle in my home and represented illness and fear.

The first thing that needed taking care of in order to find back normality in my own home was irradicating the bed thang.

Yesterday I made the call to Vitaal to ask them to come and collect it. Somehow I was worried that everyone would say it might be too early. I don't know why I got that idea, but it had never been my own idea in the first place. I have to say it served it's purpose, but I hadn't planned to go there.

Not only did the bed go, so did the bed pan and the bed table. As I reclaimed land in my own home a space began to grow in my head.

I managed to attend to some vital administration the whole morning and came to the conclusion that I was still pretty organized as I managed to find all my papers rather rapidly. A clearer head has consequences. My body did not agree, and therefore pain played a role today. Like I said yesterday, "something has got to give".

Back to rehab tomorrow! Last night I did not take my Clonazepam (a rather addictive medicine designed to calm wobbily legs). As I have been taking it for over a month I thought I might just see if I can do without it. I am not sure if that has caused the pain which I felt today, but I believe that playing ping-pong (a rehab exercise) for 23 minutes yesterday most probably was the actual cause of my pain.

Here goes another night without Clonazepam! Being off this stuff will make it easier to get an OK stamp in my driving license. (A procedure which is not compulsory but which puts me in a better situation if I were to have an accident, legally). Just a few more weeks until I get my stamp, hopefully, as I spoke to the man from CBR (the equivalent to CMV in the US) who is almost certain that I will be granted my stamp.

This afternoon I picked up Kiara from school and she played with her friend Bo. It is a blessing to have her be able to be around me. She was thankful for being able to jump in the shower with me as she said,
"I am so happy that this is possible again".
I guess that despite all the tragedy, Kiara has already learnt a very important lesson in life:To cherish the small things we take for granted each day.

In the evening Paul came to visit me. I hadn't seen him in a long time so it was great to have him here. Slowly, but surely I will find my way back into my own social circuit. At the moment interaction is overwhelming, as nature forces me to concentrate on getting well.I must use my energy well. "Something has got to give". Bear with me, I will come around and reply my e-mails, phone calls and tekst messages eventually. The funny thing is, that as I spoke to one of my rehab gang, we both noticed that coming home, socializing amongst our peers (i.e. the other invalids) feels much more familiar than socializing within our own environment. I suppose it is all a matter of time.

Something's gotta give

As things slowly but gradually are starting to return to normal, I am attempting to realize that something has got to give. There is too much to attend to in a 24 hour day. Where do I start? The house, my administration, the job I got from work, deciding what I want to do with my future, interior decorating, writing the book I want to write etc. etc.. Most things I look at seem impossible whether there are physical limitations or a mental ones. Finally, I just give up.

There is plenty to do without even starting any of the above! 3 days of rehab, bringing Kiara to school every morning and picking her up, doing the groceries, cooking, cleaning up the kitchen washing clothes etc. etc. It all sounds so simple...but every action is a major effort. I notice that it is hard to get around to meeting friends. Sometimes I am tired, sometimes I am concentrating on Kiara, and sometimes I am simply depressed. I frequently let the phone ring without picking it up. The extra impulses seem confusing at times, so I illiminate them. On the other hand...it's quiet here and I miss people around me.

It felt great to be able to bring Kiara to her soccer practice (another one of those Earthly activities). That was certainly the last thing I expected to do anytime soon. A fine activity with consequences. Pain in the evening.

I don't know where to start as almost anything I really want to do requires help, which requires people around me which results in fatigue. Today I have decided that I will concentrate on making my home my own again, as feeling at home should also make me feel better. Apart from that I will try to figure out what I want from life. Getting a second chance is great, but remember that feeling of being a kid in a toy store? "What should I pick?"
or "What if I miss something?" It's risky business making choices.

Sometimes fate just takes over. Then it becomes confusing whether life is living me or whether I am living my life. As my mind explodes, something has got to give. But what?

Some progress is being made

I am improving. For instance, I have moved from inside the house looking at the garden to being outside in the garden. Yes, the improvement is there.That is for sure! But don't be fooled. The outside looks much better than the inside. It is interesting how human's brains work: I look good, therefore I am fine. Such is the viewers perception. The truth of the matter is that I have just gotten a tiny glimps into the my own future. A future that only a few weeks ago was non-existant in my mind. This is a measurable phenomenon. I used to plan ahead 5 years and I had a life expectancy of 75 years in my own head.

When I got sick I didn't dare look further ahead than 2 years, but I only had the security of a life expectancy of several months.

Now that those months have gone by and I am obviously recovering, I don't look ahead more than a few days and I expect to reach the age of sixty.

So what next? I am a changed person. All my values have altered. My dreams have been adapted to fit reality, and I know myself better. I have a clearer understanding of who I am, what I am capable of and what my task here on Earth is. My past being a given, it is a challenge to give shape to this new future. While I am still working very hard at surviving (the fight is not over yet) and regaining my validity, I am tempted to sort out the questions that fill my mind. Having the energy drained out of your body to recuperate does not help the thinking process. Thus leaving me puzzeled and tired.
Many forces are pulling at me at the moment. For instance; I need to be alone but I hate the loneliness. I have found love, but I cannot have it. I would like to get my home in order, but I am incapable of doing it. I want to concentrate on myself, but I have gained more wisdom to help others.

Boy I can't remember, but birth must have been really hard! I guess babies have the luxury of sleeping and eating all day. I in turn am learning to pick up the tasks that my responsibility is made up of.

It’s a tug of war
Though I know I mustn’t grumble
It's a tug of war

But I can’t let go
If I do you’ll take a tumble
And the whole thing is gonna crumble,
it’s a tug of war

Pushing, pushing
Pulling, pulling
Pushing, pulling

In years to come they may discover
What the air we breathe and the life we lead are all about
But it won’t be soon enough, soon enough for me
No it won’t be soon enough
It won’t be soon enough, soon enough for me

Tug of War by Paul Mc Cartney

Coping with stretching pain

As a result of my operation and lying flat on my back for 6 weeks, my hamstrings and quadriceps muscles were shortend. Basically, before I went into the hospital, my legs were in shape and my back wasn't...and after I came out the reverse was the case. In rehab the primary aim was to get my muscle strenght back to normal. Seeing as the strength in my muscles was 4,5 on a scale of 5 when I started rehab, much of my physical therapy has been aimed at lengthening my muscles to enable normal movement.

Stretching your muscles to lengthen them is without a doubt a matter of "no pain, no gain". There are different techniques for this such as active stretching and passive stretching. (The first is self induced, the later by external force). It is the passive stretching, that causes the bad pain. One type of treatment (proprioceptive neuromuscular facilitation) involves the therapist applying resistance. This technique is applied to my hamstrings and quadriceps. The same evening and the next day are killing. The pain is bothering and gets in the way of your daily activities. The question is where does one find the balance between trying to get on at home and trying to get back in shape? I am the type of person that tries to deal with both. Perhaps that is the reason for my quick recovery. Resting in between helps but pushing yourself is also a mental effort. As for today.....OUCH!

Autumn sets in...a new life begins

After a Spring and Summer of pests and illness,
(Or of the disease which takes men in the dark, or of the destruction which makes waste when the sun is high. Bible in Basic English) Autumn emerges filled with a promise of life.

Only a week ago I struggled to find faith. Faith in the fact that I will indeed live longer.

Between the Grim Reaper, the nearly apparition of H.I.M. Emperor Haile Selassie I and my rodent infested home whom did not make life easy, it was not hard to keep the faith and fight for my life. Once you manage to arise from the maelstrom of negativity, you suddenly wake up with the World lying at your feet.

There is a fear of picking up opportunities, but also the opportunities themselfs seem to have morphed into new ones. Subsequently, there is only one way to take those opportunities and use them to your benefit. The key is having faith. As we can not buy faith at the corner store it is up to an individual to figure out where to find it. In some cases it is given to us. Whatever religion or non religion you have, faith is always a matter of believing.

The choice I made on April 17, 2007, just after I heard that I had cancer, was a choice to live. It is that choice that saved my life. In order to live, one must have faith and when you loose it, ask others to help you find it again.

"Luctor et emergo"

Job 5:22 "You will laugh at violence and famine, And you will not be afraid of wild beasts".
Psalm 91:10 "No evil will befall you, Nor will any plague come near your tent". (NASB ©1995)

Thyroglobulin down from 22550 to 3540

Finally some measurable results! During my visit to Dr. Gerritsen I finally heard the results of the blood tests concerning my Iodine 131 treatment.

In order to determine whether the amount of cancer cells in my body have deminished. A blood test is done to measure the amount of Thyroglobulin, an enzyme produced by thyroid cells (The Thyroglobulin acts as a marker). In other words, our aim is to reduce the amount of Thyroglobulin in my body to a minimum. Hence the conclusion will be able to be drawn, at a certain point, that there are no longer any Thyroid cancer cells in my body. Seeing as the Thyroglobulin output has been reduced to 1/7, one can quickly conclude that the therapy is truely working at a rapid pace and in an effective manner. These values were measured on 7 June and 4 August. A new blood sample has been taken today.

This is the day that I can finally, without a doubt, say that I am beating the cancer. It is the day that I am able to tell Kiara that I am really getting much better. It is the day that I can let some of my worries go. But it's still a long way to go.

And it's a long way there, it's a long way to where I'm going,

And it's a long way there, it's a long way to where I'm going.

Hey everybody, don't you feel that there's something, but you know

in a moment it is gone.

I live for the day when I can hear people saying that they know and

they care for everyone

But I feel like I've been here for the whole of my life, never knowing

home.

It's a long way.

It's a long, long, long way there,

I'm gonna keep on tryin',

I'm gonna keep on tryin',

Yeah,I'm gonna keep on tryin',
I'm gonna keep on tryin', ah!

Little River Band

Home again

Home again c 2003 Mara Friedman

So, now I am home again. You'd think that that would be a time to party. The truth is that it is scarry as hell.

Though I have made immense steps forward in my record time rehab, I find myself at home, an invalid for the time being, not knowing what the future holds.

I am very greatful to be back home with Kiara. Getting her to school in the morning is a major task as it has been the passed years...only now I am allowing myself to feel it. Allowing myself to feel pain, discomfort and anger are a major part of my rehab. I blocked these feelings the last 6,5 years because I had to get on, take care of Kiara and make sure that I was earning enough to get by.

In the process I set myself aside for the time being. I figured I could manage that until Kiara finished her elementary school. If I had not had a daughter I would have left the country after my divorce to seek my happiness elsewhere. Finding happiness was difficult here in a post Fortuyn era. Seeing as depression and pain were a part of my illness (I did not know which one at the time) I also preferred a warmer climate.

Now that I have gone through rehab it is time to evaluate what I have been doing with my life. It is time to figure out how to better my QOL, now that I know that I have even more limitations. My time management was fantastic! The problem is that my pace has decreased. It is the time to figure out how to maintain my life in the best possible manner. It is the time to incorporate more fun.

Right now I see many obstacles. Getting around them is energy and time consuming. Coming home, for me is just the beginning of getting better.

A mental process with many 'downs' and here and there a few 'ups'.

Leavin' the Trapp

10 minutes to go and I will be picked up by Marcus at the Trappenberg. Going home today, hopefully to stay. I will be coming in for therapy on a daily basis for the next 4 to 6 weeks. Let's hope I keep improving.

I go home with mixed feelings. Will I manage?
Tomorrow morning I will try to get Kiara to school.

Tough cookie

I pulled through the weekend well despite the 3 glasses of beer and 2 glasses of Rosé I had last night. The only thing I noticed was a little bit of thirst which wasn't strange as I had hardly touched my water on my bedside table.

After waking up at 8.30 in the morning I went back to bed at 10.30 to rest. I had expected a visit from Aldith, but she postponed it to catch a bit of shut-eye herself. This gave me the opportunity to stay in bed a little longer. I had fallen asleep and woke up around 14.30 to another one of those terrible dreams. I was hot and sweaty and my heart pulse was at a all time high.

Adrienne came in shortly after and I told her about my dream which helped me get things out of the way. It seems like there is too much to deal with while I am awake and that somehow my fears find an exit in during my sleep.

I had some lunch and watched a children's movie about monsters and wondered if Kiara was watching it at her father's. It was very funny and the dialogue reminded me so much of Kim K. in S.A.. I did my ironing and packed my bag for the next two days. When I was done I did a few more chores that needed tending to before I left the house.

Adrienne, Jacques and I set off to Amsterdam to pick up Kiara, who had indeed watched the monster movie. Afterwards we went to Nam Kee. I finally was able to eat what I had craved for in the hospital. Kiara ate like her life depended on it and once again, I proved to myself that going out was not a problem.


LOVE HEALTH AND HAPPINESS!









Off to the Trappenberg for my last two days!

Dutch night out

Last night, I went out at night for the first time since the evening I spent with Willemijn and Karlien in Loosdrecht which was on June 14th. It is now September 9th. Wow, that is 3 months....a pretty long time ago!

Marcus, with whom I used to sing in his Reggae band has reverted to Dutch chanson and is trying to break though. His first CD is expected in November, and last night he was introduced to the Amsterdam public.

The Dutch chanson, is called 'het Nederlandse Lied' and finds its origin in de Jordaan, the former working class neighborhood (now yuppee) of Amsterdam. Every year two significant festivals are held. The festival on the Elandsgracht (not too far from the Anne Frank House) and the Jordaan festival on the Westerstraat and Lindegracht. Marcus made his debut at the Elandsgracht festival last night and was placed second to last in the line-up. The Elandsgracht is traditionally the place where the Dutch stars are discovered. Johnny Jordaan, Tante Leen etc. Also made their debuts there.

Adrienne, my eldest sister and her husband Jacques had

told me that if I wanted to visit anywhere I ought to mention it. We went to the festival and it was great to see Marcus on such a significant stage! Despite the huge mess-up of the sound technician who had lost the soundtrack and an MC that was obviously jealous of Marcus' talent, he really pulled though excellently. His hard work is showing results and I am baffled at the speed with which he has made the switch to 'het Nederlandse lied' and the quality of his sound.

It was a great night! I was happy to witness it, and Adrienne was also back in her old neighborhood. Therefore it was also a bit of a trip down memory lane. We closed off the night at a fantastic Thai Restaurant called Rakang. Where I said 'hi' to Leco, the Dutch celebrity make-up artist, thinking that I knew him. Actually, I do know him from my AVRO years...but I don't think he knows me. It suprises me how make-up artist can become celebs too. Anyway...I guess that anywhere Leco eats, must be good enough for me. ;-)

It was fabulous to be out doing normal things. I was able to do this all using my wheel chair and crutches. It is really strange; sometimes you see people in wheel chairs where your focus is on the wheel chair. Sometimes you see a person and then realize that they are in a wheel chair. In my case people don't seem to really see the wheel chair at all. I wonder how long I will need my chair. Perhaps for ever, perhaps not. All in all, my body did not resist a great night out with a few drinks. Stage 1.

Demanding and necessity

My release from the Trappenberg is on September the 11th. How great it is that September the 11th will have new meaning to me for the rest of my life. I will carry on with my therapy but as an external rehab-patient. For the next 4 to 6 weeks I will try to adjust at home and go in for my sessions two to three times a week.

Though my rehabilitation is physically demanding, I have to say that the psychological aspects are much greater. I have been through a roller-coaster the past 8 months. First not knowing whether I was going to make it. Then a period in the hospital which had me managing my own specialists, and now the acceptance that I shall indeed live longer.

Giving that new life (as I see it) meaning is probably the hardest part as I have been forced to re-assess the life I was leading before. This, in order to make the best of my future life. Two things seem to be evident to me: The fact that I am able to take care of Kiara myself and the fact that I shall return to PWC to finish what I started. I still have many dreams though, such as living abroad for a few years, or working in the field for an NGO, or perhaps even being part of a thinking machine. The problem is that I can not do all those things at once.

At the moment I am wondering if I will remain in this invalid state. My house is being adjusted, I need my crutches, wheel-chair and will be getting a scoot-mobile. I am also in the process of applying for an international invalid parking pass and a confirmation from the CBR (the Dutch organisation in charge of issuing driving licenses) that I am infact allowed to drive in my car.
My doctor has fortunately told me that my physical state should not cause a problem as the strength in my legs is sufficient and improving.

All these matters make me vulnerable. When I got sick I reallized that I have spent the larger part of my life, helping others. The balance of giving an receiving has always been out of proportion for me. I had promised myself to concentrate more on myself and to look for that balance. The last 8 months I have learned to ask things. Things for myself. And here are my requests to anyone who cares:

• If you see an opportunity to help me...please go ahead and do so.
• If I tell you that I have reached my limitations...please believe me.
• When I say 'no'... I mean 'no'
• If I want to do something on my own...please allow me.
• If I irritate the hell out of you...then get out of my life.
• If you care about me...tell me.

I had decided to write down what I need from others and this is it! It wasn't as hard as I thought. These rule should apply for everyone and it is actually rediculous that there is a necessity to spell it all out.

Thank you to all of you who have supported me through out my illness. I have not recovered yet but shall be starting my new found life this coming week. It is now that I will need the most help.

Baby K spends the night

It was a big suprise for Baby K when she heard that she was allowed to take a day off from school and visit me at the Trappenberg. The object of the game was for her to experience what I am going through.

If you are not aware of what is going on here, the place looks like a health spa, a totally wrong impression

for a kid which has had to miss her mom on a daily basis since February 12th this year.

It was an even bigger suprise when she found out that she was allowed to sleep over too. After falling asleep much too late, we woke up at the crack of dawn to go to our swimming session followed by breakfast and a fitness session.

After lunch Kiara had her own little session. As far as she is concerned she went to play, but in actual fact we are trying to asses how she is dealing with all the changes. It is quite wonderful that all these things are possible and I am learning more and more that most things you ask for you can somehow get.

At the end of the day Kiara was so tired she could hardly stay upright. I am hoping she now understands what the purpose of my rehab is.

Limitations and boundaries

If my body is the vessel with which I must travel through life, then it is wise to not only take care of it's maintance. Being aware of it's capacity is perhaps even more important as to not wear it down whilst living life in the fast lane.

Two weeks of hard work in rehab have been comparable to training for the Olympics (if you put it in the right perspective). At the end of the week my body is so extremely tired that I can hardly do my exercises. The question is: "how much exercise makes you better and how much sets you back a couple of days". It is a matter of knowing ones boundaries! I have not been too good at that the past years. I lived in pain, accepting it as a part of my life.
Pain is something you get accustomed to.

The trick right now is to learn to feel when I have had enough. Crossing this boundary actually results in me feeling pain that only a little while ago I would not have perceived. My limitations are becoming apparent to me.

My physical therapy session turned into at psychology session yesterday (Friday). When, worn out after a whole week of exercise, I finally realized how I had managed to deal with the pain all those years. The trick was compensation!

If you tighten your muscles around the area where the pain is...you instantly relieve the pain. If you tighten your muscles all day long it leads to a continuous waste of energy. (No wonder I thought I had ME).
The realization that I have been doing this for years on end hit me like a ton of bricks. The pain that I could no longer deal with this week was much less intense than what I have been handling for the passed 3 years. Right now this pain is almost unbearable.

I am still managing on minimal medication though. And slowly, I am coming to terms with the fact that there may be many things which I will never be able to do again. I seem to be able to accept this, but all the things Kiara and I wanted to do together in the future (hang-gliding, snow-boarding, entering pyramids etc. etc.) will have to be re-evaluated. Today I tried to explain this to Kiara who did not understand how her mother could break a promise, as a promise is always a promise in this house-hold. I tried to tell her that we are lucky. Lucky enough to celebrate life, which a little while back was not quite certain. It is the bitter truth. When I asked her if she had cried about me in the past months, she said she had not. Tonight she came downstairs after I had put her to bed. She came to tell me that she had cried about me being sick tonight. I told her crying was a good thing to do. She looked at me in a puzzled manner. I then explained that you often feel better after you have cried.

How ironic! Now that I am accepting my fate, my daughter is not.