Well, for my first use Perl journal, and blog(-like), entry ever I thought I would have written something more perlish. Instead it's all just about me. Whatever, the main event in my life for the past week is that I've been to Candiolo for a preliminary visit with a doctor there, for the second phase of the terapy for my disease.
Now, to be explicit about it, I have a tumor. It's a multicentric osteosarcoma. Actually, it's the first time I mention it publicly, although I've spoken freely about it with friends and relatives.
I've now undergone six cycles of chemotherapic treatment with typical sarcoma drugs. However, chemotherapy is not enough for this kind of tumor. This is why I went to Candiolo, near Turin: because there's a centre there where they apply a cure that's not standard and that they're not doing in my city, Milan, notwithstanding the fact that it's the second biggest city of Italy, so they transferred me there.
Not only did I get a disease that strikes two or three persons in a million, not only in a form that occurs in less than 1% of cases thereof, not only does it affect the skeletal apparatus, whereas I'm a judoka, I even got it at 31, whereas it's a typical childhood tumor... for such an unusual disease the cure "must" be unusual too, in fact this second part I was referring to above is experimental, but of course they think it is appropriate for my case: indeed the doctor told me I will be about the one hundredth individual in the world taking it.
Said all this, the question that I've been repeating to my self every single day since the whole story began, on May 31st, remains: "why me?" And I still don't have an answer. So the feeling of an adverse fate knocking down on me is strong. OTOH I still consider myself to be lucky to live in a country where I have access to these advanced and supposedly expensive cures, whereas it's tormenting to think that the vast majority of this planet's population not only doesn't have access to cures for severe and rare diseases, but not even for light and common ones, and often is to die for them...
Re:Loki can Indeed be Cruel
blazar on 2006-11-13T11:11:10
I'm not sure if what you have is genetic or it's just blind luck.First of all thank you for your kind words, which I take as an encouragement. Speaking of genetics, as I like to say I'm not afro-nippo-scandinavian, for example, but I'm still confident I should have a faily rich genetic pool, as I'm for one half from the south of Piedmont (Alto Monferrato, Acqui Terme, http://en.wikipedia.org/wiki/Acqui_Terme) with a known great-great-grandfather of Ligurian origins, one fourth Emilian, one eighth Slovenian and the remaining eighth Austrian.
Actually, one sad thing about my disease, but then (I guess) about virtually any rare disease, is that there are no known causes. I don't take drugs. I don't even smoke. But it hardly matters, since it doesn't constitute a risk factor for this tumor. Indeed it's strange to not even know whether you did something potentially risky in this sense. A doctor keen on martial arts with whom I made friend even told me that there are studies indicating that the bone stimulation in Judo does prevent some diseases, like osteoporosis...
The doctors talk about simultaneous factors. However a former girlfriend of mine with whom I got back in contact because of the disease and who works as a biomolecular researcher in a medical field (actually she does staminal cells sorting) was at a conference some weeks ago, where they were talking about biobanks with samples of tumors of all kinds: the alarming datum is that in 2005 there have been 11 millions new tumor cases in industrialized countries, and that based on current trends they expect them to grow up to 75 by 2030 due to enviromental causes!
Re:I second that.
blazar on 2006-11-13T17:09:14
Thank you for your kind words too. Of course not only do I plan to stay with you all for quite a long time, but also to start training again, although I am aware that it can't be anytime soon, and that I will have to modify my practicing ways. Unless the doctors unconditionally prohibit me to, I certainly will.
Re:I second that.
jk2addict on 2006-11-13T17:41:06
Just for giggles, how are you dealing with the side effects of your chemotherapy?
The Mr's used to do pediatric oncology, and her dad had chemo, so I've heard all of the horror stories. I hear (in countries where you can do it), that smoking marijuana can help dramatically deal with the side effects.Re:I second that.
blazar on 2006-11-13T22:48:25
Just for giggles, how are you dealing with the side effects of your chemotherapy?You just have to live with them. Hair falling is probably on of the slightest after all. Actually mine used to be very short, but I used to wear a beard in a form or another since many years. (See http://en.wikipedia.org/wiki/User:Blazar) Other than that you also feel a general weakness and get easily tired. Around the tenth day since the supply of drugs your white and red corpuscles tend to drop down, and so do other blood corpuscles, so you have to take exams to keep the situation under control just in case they fall to low, and more generally you have to be careful those days.
The Mr's used to do pediatric oncology, and her dad had chemo, so I've heard all of the horror stories. I hear (in countries where you can do it), that smoking marijuana can help dramatically deal with the side effects.Indeed nausea is nothing ever proved before. I've heard stories about some people getting sick on some alcoholic beverage and being disgusted by that beverage ever since, but I did happen to get so drunk as to have to puke, a few times, yet it didn't result in that type of aversion. OTOH after the first few cycles I began feeling nausea solely on entering the department, on a psychological basis.
As far as marijuana goes, indeed it's well known for its antiemetic propertis, but no it's not legal in Italy and IMHO there's far too much hypocrisy, because it may be a good drug in these situations, whatever you think about it as a recreative one. AFAIK there are no protocols but possibly experimental ones. Speaking of which the last government with a sort of trick managed to approve more restrictive laws, that are likely to send into jail some dude for a joint and leave out some big criminal. Interestingly they published the new threshold values over which one is considered a pusher and not a consumer, and that for cocaine is comparatively higher than that for cannabis. Go figure!
