Easter Holidays at VUMC

It's funny because I seem to spend a lot of time in the hospital during the holidays. I've been here on New Years Eve, Springbreak, The Dutch Queen Day, and this time round it was Easter. During a holiday a people miraculously recover. I find that an interesting concept. Suddenly about half of the beds are no longer occupied and the hospital turns into a serene and forgotten resort.

This being the case it was instantly benefitting to me as I had a large 4 person room all to myself. I claimed 2 cabinets and set up office with my 3 phones, computer, and camera. It has been a constant stream of visitors making me feel proud of my own capacity to make friends. The first round of visitors were my family of course. I believe it was Tuesday that everyone came by. Many tears were shed and everybody's reaction is different but equally painful.
Kiara was obviously my main concern, as my new handicap, which is litteraly that I am unable to walk and drive, has a direct influence on her life.
Progressive cancer has the characteristics of a monster that keeps attacking you. Each fase presenting a new challenge. It requires flexibility and stability of mind to turn each situation around to a workable solution.
This has been a week of acceptation, fine-tuning, mourning, but most of all programming my mind to meet the new standards of being.

































Up to now my survival technique has been to focus on a goal and to work hard to achieve it. This worked because my goals were in a mechanical field where there is a lot of space for personal progression. Now, however, the problem that has occurred is a disfunction in my electronics. (Neurology).
Chosing a goal and working hard to reach it will not yield any progression what so-ever.

It was painful to experience this this week. After the radiation therapy my doctors gave met the corticosteron called Dexamethason. When radiation therapy takes place, the cells break and fluid comes out. The immune system then sends extra liquid to flush it all out causing a temporary build up of pressure in the area called oedema. This pressure could have caused damage to my spinal cord which was adjacent to the tumour that was being treated. The steroids were supposed to decrease the amount of fluid in the area but also had a secondary effect on the tumour in my tail bone which is causing the problems in my leg.

After extensive testing of my abilities Dr. Hoefnagels had come to the conclusion that my muscle-power was still OK and that the damage to the nerve at this point is only to the sensitivity (I can't feel parts of my leg).
I was put on a strickt regime to train my muscles and me being the top sporter that I am I did just what the Dr. ordered. In the course of the week I started to walk again with walking aids and to sit up sraight again. Then everyday I started to feel a little bit more in my leg. On Thursday they stopped giving met the Dexamethason. Things are running really smoothly in this ward and I don't even feel the need to monitor the nurses when they bring my tablets.
On Saturday afternoon the Dr. and I had a plan to let me go away from the hospital for a few hours. Suddenly, on Friday, within an hour all the sensitivity that I had regained during the week disappeared. I had hoped to believe that my progression that week had come from my hard work but it turned out that it was 100% a chemical matter. This came as a terrible psychological blow which put me off track and made a whole week of extremely hard work seem like a waste of time. It was very painful and confronting, to learn that my survival skills which I have so succesfully applied the past years just weren't going to cut the deal.
I had to re-adjust. With many calls to loved ones, talks with doctors and nurses, I managed to regroup. A decission was made to take a smaller dosis of Dexamethason and to gradually build down the dose so I can get used to the change slowly instead of having to deal with the shock effect. I felt that hanging on to the medication that I fought the doctors about having to take it earlier in the week, just until I have a new plan, was more humane.
They agreed and I am now doing just that.

This Easter weekend I had 2 other goals. Leaving the hospital for a few hours on Saturday to have dinner at home with Marcus, and going out with Melvin and Marcus on Sunday. Both were huge challenges but we succeeded feeling rather chuffed with ourselves that we accomplished our survival trip.
Marcus is increadible, a constant haven and support. He is solid as a rock and gives me the confidence to go out there and face the World.

So, what's next? Right now we are waiting for information to make a treatment plan, a process in which I am personally involved. The object is to try to find a way to decrease the size of the tumour in my tailbone on S1.
There are 3 types of methodoligies that we are looking into.

1. Embolisation
2. Heat therapy
3. Surgery

Then there are other types of treatments that I have to think about with regards to my general state of health, like my radioactive Iodine treatment and bone strenghtning therapy.

Embolisation is stopping the blood supply to the tumour. This would theoretically suffocate the tumour and make it shrivel up and die in the course of a few weeks. The trouble is that it is hard to find the right arteries an the tumour will fight back trying to create new arteries. Taking my chemo should counter-act that.

Heat therapy would mean that they would electronically burn away tumour tissue...a dangerous enterprise as there are many things that they could accidentaly damage in the area and they woud be the same things which we are trying to protect.

Surgery would mean cutting away the tumour, with the same risks as with heat therapy.

And then there is the chronology. What can be done first to leave options for the future. For instance, if we do the heat therapy now, then I won't be able to have the surgery later.

We are taking our time to fix this puzzel and are making sure that the Top Dogs are getting all the necessary information at the moment. This is causing the long wait in the hospital.

Luckily Kiara is in good hands. She has been with Martin and is now with her best friend Martine. Kiara is increadible and has learnt the skills of dealing with disaster and disappointment. She has the composure of mountain basking in the sun, breathing in day tot day life like it's going out of fashion.
I am so extremely proud of her!

Tuesday arrived and it was D-day....what was to happen next. But Tuesday came and went and I still don't know if the doctors in Leiden dare to operate on me. Instead I went about planning other things like how am I going to go home, when will I have the bonetreatment, what can I request the Trappenberg, how can I adjust my house. I also made sure that I tested to see if I will be able to go up and down the stairs at home. This resulted in a extra strenuous session with the physical therapist leaving me knackered for the rest of the day. The verdict being....."Yes you can"!

I have to say that the strenght that I have to go through this is because of you. I couldn't have done this without your support, and there are a few names which I would like to mention here:
Mom, Dad, Kiara, Marcus, Sidney and Collin, My brother and sisters, Hugo, my neice and nephews, Mercedes, Jacqueline(my self selected sister), Tineke en Henk, Jocelyn, Matt and Zara, Helena, Goran and kids, Mieke and Ad, Annelies, Bart and Martine, Ineke, Sander, Myrugia and Jermaine, Saskia and Henk and the Kids, Gülzen, Myriam and Sylvester, Rachelle and Remco, Baby Valentine, Frank and Bernadette, Birgit and Peter, friends from Mandela, friends from PwC, Madelon and Robert, the Twitter posse, Tirza, Ronald de Moor, Martin and Vanessa, and many more of you....for making this medical production work.