31 March 2010

Storm clouds they gather

I promised to post about what is next. I have been told that I am not to expect to be able to feel the bottom of my leg and my foot anymore. This has great implications...I will again need to learn to walk, which should be possible as I still have the strength. This problem and several other potential problems like bladder retention etc. are being caused by a tumor on my tailbone which in a month's time has more than doubled in size. This tumor has has its maximum share of radiotherapy and therefore doctors are looking for another way to reduce the cancer mass. Each possible solution in very invasive and a possible threat as this area of the body is an meshwork of intricly woven arteries and nerves. It's a very specialistic field for neurosurgeons...they are looking into the possibility to operate on me. There are two more ways to try to treat this, heat therapy (burning) and embolization (blocking the bloodvessels).

life as I know it is going to drastically change. Right now I am overwhelmed by the speed at which things have gone (Thyroglobulin count from 6K to 20K in one month). Obviously I am worried and wondering if I am counting my last days....My doctors don't seem to think so because they want me up and walking again and are working very hard to find the right solution for me. My attitude the last 3 years is paying off, herds and herds of doctors in 3 different hospitals are working together, listening to me and providing the best care. I am scared.

First thing in the morning is radiation therapy of TH6. In the course of the day I hope to hear what the dream team has decided.
Telling my Marcus, my family and friends about this hurts so much.

29 March 2010

A turn for the worse

I have so much to catch up on like Kiara's last show....

but once again,my
...health is getting in the way. I was admitted to the VU hospital again last night with back problems. The problems are rather serious....two new tumors...one on th6 and one on S1 which is actually an old one but is giving severe problems right now. I am in the neurology department now in room 2b 44. For more info about visiting hours please go to www.vumc.nl. Tomorrow I will be reporting on what this means and what is going to happen next.

20 March 2010


I see that I have loads to catch up on. But just for now, I am off to turn into a chocolate wrap. Relax-day with Tineke!

06 March 2010

Post Op

A week has passed since my operation and things are gradually picking up. I had great support from my family which is very helpful in these situations.
I suppose you can say that the operation was succesful despite the fact that my bone broke in two. So how are things now? My recovery is almost supernatural. I am already using my arm a little bit and the pain is not too bad. I do however get back aches, probably from compensating for my arm.
When they place the pin, theoretically, the cancer material is pushed down the inside of the bone to the bottom part where the pin ends. Radiation therapy is therefore necessary to prevent the cancer spreading to that area.
I will be going in to get beamed sometime next week. Then after that we are resuming the Iodine treatment to be on the safe side. I am giving the chemo a break and actually intend on firing my oncologist to subsequently try to get with the program in Leiden LUMC.

This whole thing has been really disturbing. I was just moving along when my last limb lost way. It worries me to think what is next.

As all this is happening I am still focussing on the future. I'm not through yet. I am trying to figure out what to do regarding my company (hoping to find a way to work on a more frequent basis) and am looking into where to live after this house. Because my career came to a screeching halt, it will be impossible to stay in this house for more than a year and a half or so. There are many new building projects around and I hope to take part in one. Figuring out what is best for myself and for Kiara is tough.

As for Kiara, she seems to have bleeped this operation away. When I told her about it all she said was 'you're turning into a robot'. Luckily she had her holidays while I was in the hospital. She stayed at Martin's and was able to get her mind off things. When she came back on Sunday night, I think it must have been as if nothing had happened.

It's one of those sleepless nights. I will post some pics in the morning.