One thousand and one hundred people lined up to pay 90-250 dollars each to see a live interview with astrophysicist Brian Greene in Sydney. Full house. I was there and I loved every minute of it. Science is more and more fashionable. And, in addition, science and art are always mixed at these events. Art is used to communicate science.
Being in Sydney, with Nicole, gave the opportunity to enjoy the – just started – Biennale as well. If you go, don’t miss Grayson Perry (MCA) and Camille Henrot (Cockatoo Island).
Bharti Kher, Six Women. Cockatoo Island. This work alone was worth the trip from Brissie.
Emma McNally, Choral Field; an amazing collection of virtual map lookalikes.
Nina Beier, Allegory of Peace and Happiness of the State, 2015, MCA. Nothing beats contemporary art.
Sol Lewitt’s ever presence observed by Nicole
A cruise ship moored near the Sydney Harbour Bridge is being photographed by a tourist
If you fly all the way down from Europe to Australia you have to see kangaroos in the wild before heading home again. Lots of’e,m in the yards and paddocks of Tamborine Village.
Brisbane’s got just over two million inhabitants. But during the third of three events I visited at the inaugural World Science Festival I was seated at a chair next to a very good friend, Vanessa and her husband Ross. Living just off the mountain. 800 seats, and I was on the one next to them. Mind you…. at each of the first two events I also met friends from the mountain… the world is small when you live on the mountain and love science.
Liz is getting better every day, but is still very tired and has some pain from the surgery.
Boris is fine, but gets older by the day… still happy to go for his daily walk and car-trip.
I had a good talk with my hematologist. The blood indicates that the medication is working. That means that it is possible that the disease can be put on hold. Contrary to chemotherapy it will not lead to remission, but to a stop of further development. Therefore the symptoms of the disease will continue. Night sweating, and coming and going rashes, are the worst symptoms right now, so that is pretty much okay.
We also discussed prognosis. Doctors don’t like that, because it is of course a topic based on science, and chances, no hard facts. For instance: the disease is expected to continue with 50% of patients after 30 months. Even though that is only probability, it does say something. So far I have responded in a sort of average way, therefore it is rather likely that the leukemia will not further develop for about 2.5 years. It will after that, and at the current state of affairs life will last another 30 months after that. All of this depends on availability of the treatment. Right now I receive it ‘on compassionate grounds’. It is very uncertain how long this will continue, mainly because I cannot afford to buy it. I am grateful for every month I receive it.
Of course, no certainty, and many, if not most patients would not like to know all of this. The uncertainty is not pleasant, nor is the fact that life is finite.
But I like it.
This knowledge has given met reasons in the past to fill in my life in a way that suited me best, and also fitted that sort of timeline. It helps me with taking decisions about what to do next, and when.
It gives me a framework for life. As it stands now I am seriously planning a 4 weeks trip to Holland in July/August. In 2017 a longer trip with Liz to an overseas destination is certainly on the menu.
I think that the real challenge is to use the next 5 years as good and fulfilling as reasonably possible.
The three of us are going well.
Liz is getting back on her feet, slowly but steadily. The side effects of my treatment are minimal (if any), but the effects also are so far non noticeable. Hopefully that will improve.
I keep enjoying our night walks very much: great activity, beautiful rain forests and a very pleasant crew.
The crew at work: Lumart, Peter and Michael
Mountain brush tail possum
Small mottled scorpion
Mating stick insects
Liz is improving and will come home on Saturday morning.
Liz is still in the process of recovering from the surgery. Still rather drowsy, but she did walk a few steps. She does not feel like talking a lot, so phone and computer are not used yet.
It feels good that she is in good hands at Allamanda Hospital.
Liz was a bit better today, but still drowsy because of the pain killers. Despite having wi-fi she is not using her mobile phone or internet because she simply is too tired. I visited her twice, but both times for a short time only for the same reasons.
The surgery seems to have gone well and we hope that she will start standing/walking tomorrow or so. No discharge date has been set yet.
As far as my own health is concerned, the current treatment has so far not lead to noticeable side effects, but also no real outcomes in the sense of reduction of measurable symptoms I learned today. But it could easily take a few weeks for that to happen, so fingers crossed.
Worldwide only a few dozens of these bushes exist, all of them on Tamborine mountain. Zieria Collina is the name. Four populations are found in national parks or nature reserves, eight populations on Defence Force land and five populations on private land. I photographed a little tiger moth sitting on one of the very typical ‘three fingered’ leaves of the bush.
Zieria Collina is endangered, the moth isn’t.
PS be cautious if you google for ‘tiger moth’….. you might end up in the aviation industry!
Today Liz received a ‘new hip’ at Allamanda Hospital in Southport. I happened to be there when she came, still pretty drowsy, back from the recovery room. The operation is rather standard, according to the nurses, and as far as they know it’s all good. Tomorrow she will already stand on her legs and the next few days will hopefully show that it has been successful.
Today she still had – of course – quite some pain and she was still very sleepy. I didn’t stay long, but it seems to be okay.
We can’t wait for the day that she will be able to walk normally again without pain.
In an exhibition in 2011 I presented a series of five works about dimensions. It included the ‘fourth’ dimension, depicting my Cube in universe, flying over gravitational waves. I am very thrilled about the recent detection of them!
We’re still going well. Liz is waiting for surgery, my health is actually improving quite substantially. In line with that I have decided that I will join Liz for a short while during her Europe trip in Winter (Summer in Europe). We expect to spend some time in July in Holland. Liz will also go to France and Russia.
I don’t have many side effects, so far, of the treatment. The symptoms of the cancer get worse, but all of this was to be expected. I spent time in the forest today taking photos of critters.
If the treatment works well, then I might go to Holland for a few weeks in July or so. Liz has never been to the Netherlands, but it is never too late to fix that omission!
No therapy option stays untested
This morning the journey uphill started: 3 tablets, with a glass of water. I will continue to take this medication every day till either the disease does not respond anymore (progresses), or the side effects are too bad. That might happen after a week, a month, a year or a few years. That uncertainty, by the way, is one of the main challenges for each and every cancer patient.
So, how does this stuff work?
Researchers found that the cancerous white blood cells are equipped with a specific chemical on the outside of the cell, called Bruton’s tyrosine kinase. This ‘enzyme’ has changed due to a genetic mutation on the X-chromosome, and therefore helps immature white blood cells to stay alive and spread through the body, without brake. That is the essential characteristic and cause of this cancer.
Ibrutinib, the drug I am using, binds to this enzyme and stops its action. That binding kills the cell. In other words: the drug is very specific and only acts on the ‘badies’. For that reason this form of medication is not called chemotherapy, but ‘targeted therapy’; the side effects are much smaller than with chemotherapy.
The impact on daily life should therefore be rather limited.
Of course it is very important to keep living in an active way, meeting people as usual, staying active and eating healthy food. And travelling, if and when possible, domestically and overseas. Essentially the same as we did since the first treatment eight years ago. All of that helps to stay sane, healthy and happy. And not only for me, but also for Liz (and Boris).
Life ogles. And I give in.
The past few weeks have been a challenging roller coaster ride, both for me and for Liz. I sincerely thank our friends and relatives for sharing some of that with us. And Boris for his levelheadedness.
On the 22nd of November 2007 I wrote on my blog that “the chemotherapy I undergo is expected to lead to a remission of the leukemia of seven years”. In November 2014 the leukemia relapsed indeed. Medical science is pretty precise; and it gave me seven years of quality life, three of those exploring Australia on board of a bus!
In the past year the relapsed disease was rather inactive, not requiring any treatment, despite deteriorating health. But in December it got rapidly worse and now, in January, it is running out of control. Without treatment most patients in this situation do not survive for another year.
Currently, the options for treatment of this incurable disease (called CLL) are very limited, certainly after relapse. Since two years a new drug, called Ibrutinib, has been developed by a pharmaceutical company in Belgium, Janssen Cilag. This medication is not generally available yet, because governments and insurers are still assessing whether the very high costs can be justified against the still unspecified gain of length and quality of life. It is, for me at least, outside my financial reach.
For now, though, the great news is that my hematologist Dr Stylian and the producer are helping me out to get access. I am very grateful for that and therefore receive the treatment now!
Ibrutinib does not lead to cure (CLL is incurable) or remission (full suppression of the disease), but it does put the progression of the disease on hold. Trials show that after thirty months the disease is not progressing in three quarters of patients using it. That is much better than any alternative.
I will regularly update this blog on the progress of the treatment and the disease; I will not write about it on Facebook. So, if you’re interested in how it goes, please follow this blog.
For now: life, here we come again!