24 October 2009

Kiara's première tomorrow

So, people wonder what's keeping me busy. Well I keep replying, Kiara's musical, Amandla! Mandela. After a long series of tryouts the show is ready for it's première tomorrow in Holland's renowned theater Carré. To give you a small impression, I have uploaded a beautiful series of photo's by Bob Huitink. Enjoy!

Yes, I am a very proud mommy!

Doing OK

After stopping the cure for 6 days I started again with an altered dose, taking 1,5 tablets each time instead of 2. I seem to be okay now apart from going almost entirely bald again. The pain is manageable and the rash has stayed away up to now. I do feel extra sensitivity in my fingers and toes though. All in all, after my check-up this morning, I knew that this is the path we will continue, at least for the time being.

My intestines are giving some problems though. To rule things out a colonoscopy will take place soon. Eventhough it is supposed to be a horrible test, I am happy about it als my intestines have been a source of stress and worry to me. Within 4 weeks my first bloodwork should be coming through. We are hoping to see a drastic drop in Thyreoglobulin, but my doctor told me that an increase could signify that the treatment is working too as levels usually rise tremendously first, then drop later on.
Kiara had gone to Martin for mid-term. This gave Marcus and I a chance to get away for a few odd days. We took the ferry-boat Ameland one of the Dutch Wadden islands. We relaxed alot taking sauna's and dining, but the very most exciting thing that happened was that I actually cycled about 4km on a large tricycle, with a little tugging and pushing on Marcus' part every now and then. This newfound ability allowed us to view the lighthouse from up close, rather than from our hotel window. I was totally exhausted but I managed to get up the next day without feeling too sore. We got home wednesday after a lovely wok meal. Despite the many interruptions on my cellphone, it was wonderful to have some time together.

14 October 2009

A novelty...I quit!

The side-effects of the Sorafenib got so bad that at last I ended up in bed all day. The rash spread all over my body, it was painful and itchy. By last week monday I phoned my doctor to ask him what to do. He prescribe a cream with painkiller Lidocaine in it and some kind of cortisone. It took 2 days to reach me which was to late. I gave up on the cure for the time being. Right here on the left, I look half decent. That is 2 days after stopping the cure. A lot of make-up and a careful selection of pics, does the job. So, I stopped the cure without further advice from my doctor. He had said that if the cream did not work, I should stop for a few days until the rash dies down. The next thing to do was to start again with a lower dose.
I stopped until monday of this week and with huge apprehension, I continued the cure taking 3 tablets rather than 4. I am not convinced that this is going to work out. Because 2 days down the road, I am starting to feel the effects again.
The short break allowed me to feel a little bit better. I took Kiara to her show on Saturday. She is getting better all the time. It is nice to focus on something that refreshing. Kiara is loving her role in Amandla Mandela. I am very happy that she has been able to do this, it has proven to be a dream come true.

Kiara and Derick before the show.

07 October 2009

The cancer or me?

So, I've been a little out of touch the past two weeks. Rehab continues. I didn't know what I was setting myself up for when I prolonged my stay.
As you already know, I started my Sorafenib cure. It is extremely tough. As usual my reaction to the medication is way over the top. Here's what's happening to my body:

  • The first 10 days I had diarrhea which led to an 8 pound (4 kilo) weight loss.
  • The there's the hair loss
  • A major loss of energy
  • Hand and foot syndrome
  • Tumor pain
  • I have a rash all over my body
  • Mysteriously, my menopause seems to have been reversed.

    All of which are alarming. I am keeping my doctor (Dr. vd Eertwegh, Oncologist) busy with worried calls, and I also saw him last Friday. He seems pleased with my progression. Pain=Gain with this drug, so we are hopeful.

His advice is stick with the programme.

Sticking with the programme is proving to be a real problem for me. Trying to combine this with rehab is almost impossible.

The side effect of my treatment are keeping me from sleeping. And yesterday the pain and itch was so bad that I decided to take a break today.

They say that if you stick to the poison long enough your body adjusts. I bet they never tried it! It is particularily difficult doing these as there was no acute reason to start this. However, this drug might give me back my future, who knows. I don't have much to go by, and I am trying to find out how other people within a range of 35- 45 do. This led to me contacting Dr. Marcia Brose of the Abramson Cancer Center at the University of Pennsylvania who led the first trials on Thyroid cancer. Ms. Brose gave me a rapid response, but I seem to be ahead of the business.

She was able to tell me about taking little breaks when the side effects get unbearable. I suppose my hunch was right. We will see how it goes. For now, I seem to be stuck at the bottom of the valley. This is one of the hardest battles so far.

One more thing that I really have to get off my chest: Bayer has a monopoly with this drug. They have their own farmacy which provides the pills, with suplementary nurses who visit your home to inform you about the drug. The price for 112 tablets is a shocking 3768,90 euro's. And my own farmacy cannot order it! I refused the nurse. I wish I could have refused the pills.

"Ohh you want to talk around them, talk about me, talk about what this that and everything Every way I been f***in you but you don't have a clue How while you sit there pointin' fingers at, imagine that, I'm the real vision of the person that you want to be It's never been you it's always been me

Isn't it funny? When every money's What you're trippin' over, leaving a paper trail ".

Tantric, Monopoly