26 August 2007

Life at the Trappenberg


Life at the Trappenberg is pleasant. It feels great to be amongst other severe cases. At the hospital I was a 'back patient' though I knew very well I was a cancer patient in an advanced stage. By the time I had left the hospital I felt like a jigsaw puzzel, chopped into pieces. (One back, one leg, another leg etc. etc.)
The coordination of my case (between the different departments) at the VU hospital was literaly killing and I was so fatigued that it took me over a week to reboot and get back on track.

On tuesday 14 August I had a meeting with Dr. Gerritsen, the doctor who had done my 2nd opinion at the VU hospital. I told him that I wanted him to be in charge of my file from now on and then proceded to tell him about everything that went wrong in the hospital. I also told him about all the situations that were potetially hazardous that I was subjected to and after a meeting of more than an hour I was granted my wish. I was lucky to be in the VU hospital because the level of knowledge is grand. But being at the Trappenberg is a major relief as communication seems to be one of their strong points.

A day at the Trappenberg is geared at progression. I have different types of therapy ranging from ergo therapy, to psychotherapy, to hydro therapy, to physical therapy, to activities etc. etc.. The best part is that the therapy which I am receiving is just like the therapy I would have prescribed myself.
The only down side here is that the food is terrible and that meals are obligatory. Today, for instance I was in the middle of an inspiring art (therapy) session when I had to stop for lunch. Argh....
In the picture you can see two of my table mates. We are actually appointed a place where we have to sit during our meals. It puzzles me which criteria they apply whilst deciding on our seating. Somehow they seem to have placed me at the "Enfants Terrible" table, which is a blessing after all as we do have fun. At least I don't have someone across me that pukes after every other bite.

Tomorrow I will be getting my own room in a wing for the more independant rehab patients. I had complained to my psychologist that I did not rest enough because I felt like I was a burden on my room mates. (3 old ladies that sleep before me and wake up after me). I relax when I call my friends and I could not do this while they were trying to sleep in the daytime.
I will now be moving to a darker but more private room which suits me well. Hopefully nobody will be joining me for the time being, as it is officially a room for 4 people.

When I came here I told the rehabilitation doctor that I expected to be here three weeks. Everybody laughed when they heard this. I have worked hard though, and he believes that I am moving on to the next step. Going home.
I think I will be here for another 2 weeks or so....from then on I will remain in rehab but come here on a daily basis and be at home with Kiara at night.
That way at least her life will return to a normal situation.

The power of thought is truely amazing!

24 August 2007

Mom has reached the big "Seven O"


Happy Birthday mom! 70 year old! What an honorable age! Not to mention; how well you have spent those years. For the most part serving others. If it wasn't helping out when you were a child, because circumstances made it necessary, it was taking care of 5 children. You were a teacher for part of your life... and you have always taken an active role in your close environment. Even now you are taking care of Kiara.
If everyone wonders why I am the way I am, well maybe my mother being my mother is part of the explaination.
When I saw Kiara after the hospital (and six weeks seperation) I was taken aback by her perfection. Not only how stable she is but also her physical state. It is a strange idea that she is the fruit of my womb. Little miss sporty actually came out of me, and here I was, only two months ago a deteriorating body. I am proud, to be Kiara's mother. I do believe that what she is becoming is for a large part the result of my own hard work. Therefore I feel proud of the job I did up to now. And proud of my own mother who has always been an inspiration.
Our children are our future.

22 August 2007

You talk too much

This morning at physical therapy my fitness apparatus talked back at me. I had my first half an hour of fitness on apparatus somewhat like in the picture. (Do notice this man is old! Pfff! And this is advertising material. It does not feel right to be using this apparatus as I am obviously not part of their target group.) Talkative as I am I was conversing with my therapist when suddenly my machine told me to stop talking!
My therapist was totally suprised. She had never seen this happen before. I carried on my exercise and once again I was told to stop talking!
I have always had a loud voice and suggested to her that the machine must be voice activated and that the wave length of my voice is at a pitch which triggers the machine. She checked the booklet and indeed; the machine was voice activated. (A special function for people who are unable to turn off the machine by hand).

At the Escola Americana do Recifé (Kindergaren through 2nd grade) I had the honour of being the school bell's substitute. I was given a voice which I should use for singing....another one of those things I should pursue more in my future life!

Apart from all this excitement, I was visited by Kiara, Mom, Marcus and Theo Prinsen (whom, to my suprise, I already know for 15 years). Feeling happy here and making huge strides. Tomorrow I have a busy day with 7 sets of therapy. I suppose they took me seriously when I said I intended to get out of here in 3 weeks time. We shall see!!!!

21 August 2007

Fast forward

The pace of time is perpetual at the Trappenberg. Once you catch the ride you are on the move. Yesterday alone, my intake day, I already moved around and sat up for a record length of time. This morning when I woke up at a quarter to seven I wondered how I was going to make my meeting in the pool at 7.30. I exercised my legs in bed and got up anyway.

Hydrotherapy felt most liberating. The hardest part is the psychological aspect of not trusting your body. I fought the tears (of joy) as I slowly realized that the validity of my body was much better than I had expected. I did many exercises in the water and was even able to perform the balancing exercises. It felt great and the water temperature was fine. I had a huge breakfast (3 slices of yeast free bread) compared to what I am used to and after a short rest of about half an hour to phone home I was brought to physical therapy. I was suprised once again to find out that working on my own fitness before my hospital period was actually paying off. My therapist measured my level of strength. He said that 5 was normal and that I already had a strenght of 4,5! This is certainly stimulating. Bird is laborious and makes sure she reaches her targets.

This afternoon I will have my first session of ergotherapy and that is it for today. I have invited my friend Hugo to visit in the afternoon and tonight Kiara, mom and Aldith will be visiting.

Incidently, I have more time on my hands than I expected, so please do visit. Please call in advance.

20 August 2007

Easy acces to computer

So once again I am hospitalized! This time in rehab. This place feels like a 5 star hotel after the hospital.
I am so happy to have easy acces to an albeit outdated, computer. This way I can keep you all posted about my progres.

Today I have had my intake with the doctors physical therapists etc. I have been placed amoungst the fighters at the dinner table and was happy to meet Lakmé. Apparantly she was an old collegue of Aldith's but she is my kinda people so I have already found some companionship in half a day's time. Tomorrow I am expected in the pool at 7.30 in the morning....let's see how this goes.

I hope Baby K pulls through this final time of mom being away from home. I hope my stay will be short but my targets are, as usually, very high.

Off to a better life! Happy birthday to me!
And thank you all of you that took the time to wish me a happy birthday. There are too many of you to contact to thank.

19 August 2007

Rehab commences

Tomorrow is really my birthday. Rehab starts then. I will be staying at the Trappenberg. Visiting hours are from 10.00 until 21.00 hours as long as I am not in therapy or during lunch or dinner. If you wish to visit me give me a call so I can let you know if I will be available. The address is:
Revalidatiecentrum
De Crailoseweg 116
1272 EX Huizen
Telefoon 035-6929620
Fax 035-6929699
E-mail: voorlichting@trappenberg.nl

You can reach me on my cell phone as usual. I have no idea if I will be able to continue my weblog while I am inside. Will keep you all posted.





39 and still living

So today I am 39 minus 1 day. My family is coming over today to celebrate. I had promised myself to celebrate my birthday each year from now on. I am celebrating today because tomorrow I start rehab. I was tempted to stay in bed and sulk all day as I had a bad night's sleep, tossing and turning, thinking about a concept I had not had the chance to think about for a while. What to do with my life from now on. A ongoing subject is: who will I allow to be a part of my life and who should I keep at a distance. Very difficult indeed.





When I got up to shower, I thought about Nel. One of the first people who shared a room with me in the hospital. She had cancer of the bone-marrow with the same amount of cancer spread throughout the body as myself. She died last week monday. Frankly...two months ago, I was not sure if I was going to make it to my 39th birthday. Had I had another form of cancer, they would have given me less than half a year to go. I cried and let the shower wash away my tears before facing my entire family for the rest of the day.


Happy birthday to me! And many more years to come!

17 August 2007

Wounds of war

On the exterior you will find my body art. A surgical scar made by the mystical
Dr. Jiya. In the photograph you can see the scar on my back which I feared so much before the operation. I was more concerned about the scar than what was to happen on the interior.
This is exactly what I told Dr. Jiya who is black as night.
(Dr. Jiya is a fine specimen of animal who causes every female to drool. Hence the volunteers to accompany me when I go for my check up)
We negro's have a thing with impecable skin. So when I found out that he was to be my surgeon I spoke to him as one of his peers. He certainly took my words into consideration, as I now look upon my scars as wounds of war which make me proud. Proud that I won the battle.
The battle seems to really have been won at this stage in time, though I am reluctant to say this. The "what if" question will pass through my thoughts frequently the coming months, maybe years. I have finally managed to get a clear prognoses. I have 10 years or more to live.
When I mention this to people they are startled. I am thrilled to pieces! Kiara will be 18 by then. I also believe that if I make it to 10 years, the following years should be peanuts! They say life begins at 40. Monday I will be 39... it's time to reap what I have sown.


"What a piece of work is man!
How noble in reason!
how infinite in faculties!
in form and moving,
how express and admirable!
in action how like an angel!
in apprehension, how like a god!
the beauty of the world!
the paragon of animals!"
William Shakespeare (Hamlet)

16 August 2007

An uplifting message from Ans

Bird
It was passed from one bird to another,
the whole gift of the day.
The day went from flute to flute,
went dressed in vegetation,
in flights which opened a tunnel
through the wind
would pass to where birds were breaking open the dense blue air
-and there, night came in.
When I returned from so many journeys,
I stayed suspended and green between sun and geography
-I saw how wings worked,
how perfumes are transmitted by a feathery telegraph,
and from above I saw the path,
the springs and the roof tiles,
the fishermen at their trades,
the trousers of the foam;
I saw it all from my green sky.
I had no more alphabet than the swallows in their courses,
the tiny,
shining water of the small bird on fire which
dances out of the pollen.


Pablo Neruda
Thank you Ans de Jager!

15 August 2007

Anatole arrives


Coming home was a major disappointment. Like a small child I couldn't sleep the night before because I was so excited. I am afraid that at this moment in time I cannot sit up long enough to elaborate, but I am sure I will a little while later. To cut a long story short, I spent my whole afternoon doing more tests (a mammography) and I went for radiation therapy. My experience in the hospital has been painstaking. I have had to be alert continuously to ensure mistakes weren't made. More on that matter later. Anyway after a long horrible day at the hospital we finally made it home at nine in the evening. It was a hot summer day so we opened the doors to the garden. This allowed Anatole to come in. I slept in the living room with Adrienne my eldest sister and in the morning I was brutally startled by a noise in the corner. Quick investigation on Adrienne's part concluded that the droppings found under my bed were definately not mice droppings. At 7.45 (much too early for them to be open) I phoned the Terminator. I found their name in the yellow pages and their name appealled to me. They set a trap with peanut butter which trapped the rodent when evening came. Adrienne who had been so brave to be in living room all day with the rat, somehow could not bear living with a dead rat. Henkie the rodent hero came to save us and put the beast outdoors.
The rest of the week was also terrible. I was insecure about what the cancer was doing and more so...what the doctors were doing about it. I was in pain from the radiation therapy which set me back more than a week. And later on in the week I was terribly disappointed in love as well, thus my being incommunicado this first week at home.
Adjusting to my own environment should really have been enough to deal with. Action had to be taken: I had to sleep, rest etc.. So I spent my weekend at my parents and started over this week.
I finally really "came home" on Sunday night when my friend Frank (since 1986) drove me home and Saskia and Demi awaited me there. They had lit all my candles. Some gifts are truely priceless.

06 August 2007

My new insides

Just a few more hours before I am out of the hospital! I got my newest scans today and thought I would share my insides with you. I have always been an open person!


This is my back. They have attached L1 through L5 skipping L3. This is supposed to give me stability. The stapels in the back have been removed. Between my back and my thigh they removed 50 stapels which I have saved in a container to one day allow a jeweler to be inspired to make a nice ring. The next picture is of my right thigh:




Estimations have been made of the value of my newly acquired titanium.
Well, guess what; it's none of your business! I must make sure that I get to the notary's office soon.



I am totally excited today...so much going on! I get to go home and Kayzee (Jocelyn and Matt's baby) came home with them yesterday.

There is much more going on which I will elaborate on later, but all in all I am ready to embrace my new life in which I intend to focus on my own needs much more. I feel like a child in a candy store!

By the way...this was the best diet. Unfortunately it is literally killing!

05 August 2007

Anticipating my release

Sunday, August 5th.
Happy Birthday André (my eldest nephew)! Well the best present I have to offer is that I am going home tomorrow. There are just a few things to be taken care of such as a mammograph to ensure the pain in my breast is only the new hormones roaring through my body and tomorrow at 17.30 I will have the first of my new (but very short series) of radiation therapy tomorrow as well.
The operated areas will be treated as a preventive measure and my sacrum (tail-bone) will be treated in order to cure the terrible cramps in my left leg. All in all I am very happy that despite the pain I have been able to mobilize myself to the point that I am able to go up and down one flight of stairs. I can also manage to walk out of the hospital my means of my what shall we call it: rolly-polly machine. Kiara, Aldith and Angelique have been torn at their seams laughing at me walking around like a granny. I will laugh at them when my ride is pimped next week! I hope that the parrot (Ara) at the shopping center has finally learnt to call me Granny as I have been practicing with him. No sound, so far!
Anyway looking forward to home sweet home. The next post will be made from home! Off to a rapid recovery...hopefully!

03 August 2007

The warmth of the sun

August 2nd 2007, I saw the sun. For the first time in 4,5 weeks time I went outside the hospital. With a wheel chair I managed to sit with my face in the sun for 45 minutes. I guess that this was the light at the end of the tunnel that I was waiting for.

Today I managed to climb up and down a flight of stairs. On monday after radiation therapy I will be going home for a few days before rehab starts. Visitors will be welcome from tuesday through Thursday from 11.00 - 14.00. More about my stay at the hospital the next couple of days.

"For I have the warmth of the sun
(warmth of the sun)
Within me at night
(within me at night)"
The Beach Boys