23 September 2009

Lots to do again

Back from Stockholm it has been pretty chaotic. Monday morning I was right back at the Trappenberg. A little while ago I was mentioning that the doctor at the Trappenberg was getting ready to release me and that I was against it....well, ...my original goal was to be able to walk without crutches. They said that was an unrealistic goal in the beginning. Now that I've gotten past the arm/shoulder problem, they have focussed on relaxing my muscles in my back, the bone in my hipjoint is healing, I am feeling much stronger. My physical therapist decided to put my goal to the test. The good news is that she has applied for an extension of my stay as she believes that my goal can be achieved! Yes! I will remain at the Trappenberg until at least mid November. It was a busy week and I did not get much time to rest from Stockholm. Kiara had practice sessions that week and I had to get her there. I also had a meeting with Dr. Lips who was able to tell me that the last head and torso scans were excellent, showing no decline in my status.

Saturday I took a tiny break from things that I have to do and had lunch in Laren with my friends Tineke and Kirsten. It was a formal lunch with formidable weather. I had to dash away as I had to make my way over to Kiara's first try-out.
I met my mother and father in Zwolle (More than 1 hour from Hilversum). We had a lovely dinner in a very nice restaurant which we thought was the theater. There appeared to be 2 theaters, so we ended up arriving there in the nick of time. Kiara did a wonderful job on stage, playing Justice, Nelson Mandela's cousin.(The child version). She will be playing all over the country on various stage. She sang beautifully and made almost no mistakes. Not bad at all for a first time on stage in front of 900 people. She really seemed to be enjoying it, which she later confirmed. Kiara also played the role of a little boy in the mob. My instinct got to my sentiment when I saw her being shot dead with a riffle. I wish she had told me in advance! It totally shocked me. She played a very convincing dead person. A little musical star is born. I must say....the other kid were fantastic too. But permit me to dote a little!

Extra Stockholm pics

As promised, a few more Stockholm shots.

14 September 2009

Stockholm rocks!

After (2009)
Before (approx. 1979?)

I've done it again. I made a trip on my own that has really been long due. Finally, after knowing Helena for 34 years, I made it to Stockholm to visit Helena's wonderful family of 4 children. Helena and I go way back! We got to know each other in Tunisia in Ms. Brown's 3rd grade class. Helena was the one with the beautiful handwriting which I tried to copy, but never, ever succeeded. The Stockholm area resembles Holland but is much more spacious. Stockholm is a beautiful, modern and elegant city. The art deco buildings adorn the alleyways with lush-green and old trees forming a canopy above the pedestrian paths. Design is a big thing in Sweden, and so is food. Helena lives in the town center with everything close at hand, including a brother and a sister, both of whom I also still knew from Tunis. Johan came in every day and was so kind to push me around a large part of the town center on Saturday, while Goran and Helena dashed around town to get their 3 kids, Alexander, Anton and Anna to each of their soccer games, whilst Clara, the youngest of the 4 had to go to a birthday party. Running such a large family is like a military operation. Having known that from my own family it was really fun to watch in a contemporary setting. Later on Helena joined us for a 2 hour boat trip which gave a really good idea of what Stockholm was like. Saturday night Charlotta and Johan also joined us for dinner. I was making long days so I did not get to bed too late.

Sunday morning we had a lie in. We hit the shopping mall after breakfast and then headed out to the television tower. A restaurant was located at the 28th floor where Helena treated us to a wonderful lunch. Time flew by and it was time to head for the airport again. I have many more pics but I will load them later.

05 September 2009

New fase

It seems like I am entering a new fase. The damage of the surgery seems to be fixing itself gradually and despite the pain I must say I am still progressing. All in all my mobility is much better than I had expected beforehand. I kept wondering as time went on if my motivation was up to notch.

I tried to compare my situation to 2 years ago, but our wonderful mind tends to erase tragedy and pain. I therefore have little reference but now that the rehabilitation Dr. has set his mind on discharging me already I think that I am doing rather well. Two years ago, I made my trip to Washington DC 3 months after I started at the Trappenberg. I can walk much better than I did then. This time round I am dealing with a fracture with is causing a lot of pain.

Once again, the orthopedic department of the VU is pissing me off. How is it that an endocrinologist can find a fracture and the head of the orthopedic department can't. The fracture in itself does not have to be a real problem, practically, as I have the pin in my leg. But it is an indication to take is much more slowly with regards to the rehabilitation plan.

So it seems like these are probably the last 6 to 8 weeks at the Trappenberg. I still have the ambition to walk without my crutches and don't see why I wouldn't be able to in the long run.

Ending the rehab is OK, as long as they give me just a little more time. I am now in the process of a series of tests to evaluate my general state of health in order to be able to move forward to the new treatment with the Sorafenib.

I had my regular scans made last Sunday and I am not expecting to see any major changes. These pictures were taken at the VU hospital on a Sunday afternoon! We were waiting for my new headscan.

Kiara and I had a strange Sunday, getting up really early for a reasonably cheap fotoshoot for Kiara. Seeing as is is her ambition to be a part of showbizz, I thought she could use some professional fotographs.

They turned out very nice. Here is one to prove it. After the shoot we went to Laren and had Poffertjes for lunch. The sign indicated that they were closing down for the winter in 2 weeks time. Just made it with Kiara. We always go there a few times in the summer. At the VU was OK. The radiologist let Kiara in. He showed her how his keys went flying through the room towards the magnetic machine (MRI) and he allowed her to look inside my head. Kiara knows my scans from my head because I showed them to her when the incredible progression was visible. She had asked me if my treatments were working. I wanted to give her something palpable to stop her worrying to much. She seemed pleased after she had seen the new scans. I guess I am doing well!

Thursday we met with Dr. Van den Eertweg, my new oncologist. After running all my tests we will start the new cure. We will wait until the 16th of september to administer the first dose. I have managed to manipulate the dates and all seems to be going according to a plan that I feel comfortable with. I have the intention to defy statistics once again. After all I am much younger and healthier than the people tested in the trials.