I use Google Spreadsheets to let everyone interested how my blood test results look from week to week. It’s so cool that you can just publish them for everyone to see. Today I have been playing with charts and as a result of that, you can see how my white cell count looks since I have started taking Glivec. It would be nice if the chart could be created as a separate sheet but it’s really a minor thing. From the first moment that I started using Google Docs it was pretty obvious that feature-wise it will be very hard to replace full blown desktop applications. Unless… there is enough added value that desktop apps cannot offer. For me there are three things that provide exactly enough additional functionality to dump desktop spreadsheet. First of them is the collaboration tools (sharing the document with others for editing), the second is the possibility to publish the document as a website for everyone to look at and the last feature that is rather hard to manage on desktop is revision management. So, I’m a complete convert - I’ll never buy M$ Office (not that I ever have).
On the leukemia-side-of-things - seems like currently I’m slightly below the norm but it also looks like my blood is stabilising and I hope that in coming weeks it will climb up a bit.
Amazon selling DRM-less mp3
Good on ya, Amazon! I have gone straight in and bought an Elvis Costello’s album (which I highly recommend) with songs that I already owned on CDs but didn’t bring them over from Poland. It will be nice to listen to them again. I have paid US$8.99 for 22 songs which is a lot of bang for a buck… In order to download the whole album you’ll have to install the Amazon mp3 Downloader - currently available for Windows and Mac with a Linux version coming soon. After songs are downloaded they are automatically imported into iTunes and are ready for upload to the iPod. Theoretically the service is limited to US but it’s not verified otherwise than by a zip code matching to a state. So, if you’ve ever seen fabulous adventures of Brandon and Brenda, you’ll have no problem coming up with a zip code that you can easily match with appropriate state. Anyways, seems like Apple will have to rethink their ugly monopolistic strategies. Cool stuff…
My progress with leukemia
Well, if you look at my results it seems like I haven’t got it any more. Of course it’s not that simple. The Philadelphia chromosome is still there and if I stop taking drugs it screw my blood picture back again. The only real way to get completely cured is getting a bone marrow transplant, but that is not really possible at the moment. But the drug works fine and hasn’t got any really sever side effects. From what I noticed so far I’m getting tired very quickly. Usually around 2 p.m. I am so sleepy that I have problems keeping my eyes open. Also, if I don’t eat enough before taking the drug I feel pretty sick, but that is easy to avoid. The problem is that a lot of food together with a constant feeling of being tired doesn’t really improve my fitness.
Immigration stuff
I have finally decided that I haven’t got much energy to spare and decided to get a lawyer and allow him (in this case her) to get it sorted for me. It’s going to cost a bit but at least it’s one monkey off my back. That should give me some peace of mind. I hope it’s worth it because if I get kicked out I’ll find myself in a real financial black hole - with no income and a lot of things to pay for.
Hacking on Psycho
Yes, I’m back to it. Again… Currently I’m working on a style manager and at the moment I’m writing it as a separate application. After I figure out how exactly I want it to work I’ll plug it into the rest of the project. I just wish I wasn’t so tired in the afternoon so I could focus a little better and do some more work.
CAD on Linux
This is something that, because of my job, interest and education, I really care about. That topic appears here and there (and even here - btw, some really stupid comments here) from time to time and then disappears without any constructive result. In my opinion this whole thing boils down to two separate issues. No proprietary CAx (CAD/CAM/CAE) system running on Linux (Solaris, BSD, whatever) being one of them and no free and open source CAx that could replace (not even remotely) proprietary applications on the other side. Big dry desert and no hope for rescue. On top of that there is one more battle to lose. DWG seems to be the standard format for CAD data. Everyone who wants to exist in CAD has to work with DWG. Now, rumor has it that Autodesk has DWGx file format in works. Basically CAD equivalent of Office Open XML. The problem is that there is no ODF in CAD, so if Autodesk decides to standardise it they will have a much easier job then MS with OOXML. OK, enough about that for today. I think that I have a long post about it coming pretty soon…
Update:Â
Seems like Amazon has done something to restrict mp3 downloads to US only. I get a “geographic problem” message when I try to download anything.
I have received the first installment of Glivec today. It’s this supposedly amazing drug that targets tyrosine kinase and prevents uncontrolled production of white blood cells. A week from now I go for a blood test to see if there’s any change although it’s more likely to show first signs of improvement after at least 2 weeks. For the next 10 weeks I’ll be having blood tests once a week. Yay!
Also, our application for residence in NZ is finally logged with the Immigration office. Now we have to wait and see what they say. There’s a good chance that we will have to put up a big fight to have a right to stay in NZ. It’s probably not what I need most at the moment so I hope it’s not going to be too bad. I’d rather spend my energy on other things right now.
News coming from Poland are moderately optimistic. Only 20% of people who could be treated with Glivec actually get it. I wonder if that’s true…
Since my last post I’ve received a great deal of support from a lot of people but also a lot of questions about what’s exactly going on. How does CML (Chronic Myeloid Leukemia) work and how do you get it? Of course, it’s almost impossible to say what causes it but it seems like we know pretty well how it works, so below is a simple compilation of facts and pictures that I’ve found all around the internet.
Every cell in the body has a nucleus that contains chromosomes. To be more specific, 23 pairs of chromosomes.
The most important cause of CML is a translocation of two of them: chromosome 9 (the ABL gene) and chromosome 22 (the BCR gene).
During the division of the cells, these two chromosomes criss-cross, break, and fuse to each other. In doing so, they create so called Philadelphia chromosome.
Philadelphia chromosome is made up of two parts and is also called BCR-ABL.
This new gene produces a specific new protein called tyrosine kinase.
Tyrosine kinase stimulates uncontrolled production of abnormal blood cells by the bone marrow.
Normally, white blood cells grow and divide in an orderly and controlled way, but in leukemia the process gets out of control and the cells divide too quickly, and do not mature. In CML, too many myeloid cells (one of the main types of white blood cells) are produced. The myeloid cells are released into the blood when they are immature and unable to work properly. These immature white blood cells are known as blasts. The immature cells fill up the bone marrow and prevent it from making blood cells properly. As the leukemia cells do not mature, they can’t do the work of normal white blood cells, which leads to an increased risk of infection. Because the bone marrow is overcrowded with immature white cells it also can’t make enough healthy red cells and platelets.
As you can imagine that causes all sorts of problems but that is a story for completely different post…
Over three weeks ago, after long procrastinating, I decided to get my act together and complete all documents needed for my residency application. One of the things that I needed was the medical and chest x-ray certificate. So, on Friday I have taken a day off and went to a medical center to complete all tests. Everything went smooth and after all the measuring, urinating in the cup, blood sucking and a few other procedures I was through with it. At the end I was told that I should expect my results by Thursday, the following week. Sweet as…
Monday morning I received a call at the office. A nurse from the medical center asking me to come to see the doctor about my results. Oops… The red light went on. Something must be wrong. They didn’t do any fasting tests so the usual suspects like cholesterol and sugar where off the hook this time. Liver? White blood cells? Maybe I’ve some minor infection and they are slightly raised. I’ve made an appointment for the afternoon and pretty much spent the whole day worrying what it could be.
When I got to the doctor, he didn’t beat around the bush too long. He told me that my white blood cell count is raised and there are there are immature forms of white blood cells present in my blood. His initial diagnose - leukemia.
Oops! Where’s the air? I can’t breathe!
Everything that he said from now on seems blurry… He said that additional diagnose from a hematologist is required and made an appointment for me for Thursday. From that point it all went pretty quickly. Repeated blood test on Thursday, bone marrow test on Friday (NO! It doesn’t hurt! It is a funny feeling but it doesn’t hurt!), abdomen ultrasound on Monday. Next Thursday, another visit to the doctor. The diagnosis is confirmed. They have found the Philadelphia chromosome (more on that in the next post) which pretty much leaves no doubt. Final diagnosis - Chronic Myeloid Leukemia, probably in an early stage.
The same day my doctor applied to Health Funding Authority in Wellington for a drug called Glivec. It’s a new generation targeted drug that is supposed to allow for controlling the disease and getting the blood picture back to normal. The nice thing was that, even though the doctor said that we should expect the answer within a week or two, they called her back the next day saying that the application is approved and the treatment will be covered by them. So, this Thursday I’m starting the treatment and probably within the next two weeks it will be possible to say what is my response to the drug. There are different options and various opinions on how to treat CML but for now I have some more immediate concerns to take care of…
Everyone says that because I have leukemia, it is really hard to expect that my residency application will be approved. I simply refuse to accept that. I hope that the immigration service will show a little humanity and let me stay here. They have to understand the fact that I have been living and working here for 2 years and my whole life is New Zealand - my home-country of choice. I have a job, a car, a couch and a bloody oil heater that keeps us warm in our cold apartment.
I can’t imagine that I could get kicked out and lose all that (especially the heater :-) ). I would also lose the access to Glivec which poses a serious risk for my health. There is no guarantee I could easily get it in Poland.
So, I’m trying to keep positive and focus on things that need to be resolved in order of immediacy. More news to come as the situation unfolds. Words of support are welcome. :-)
