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blazar (7356)

blazar
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Journal of blazar (7356)

Sunday November 12, 2006
10:36 AM

Back from Candiolo, and the future of my therapy

[ #31582 ]

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...

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  • (trying extremely hard to not put my foot in my mouth)

    I'm not sure if what you have is genetic or it's just blind luck.

    But chance can indeed be the most strange and wonderous and cruel of things.

    It seems so counter-intuitive that you can say, with great certainty, that you will never win the lottery, but that someone will always win the lottery.

    And that it continues to be true that you will never win the lottery, right up to the moment that you do win, at which time it's STILL not surprising because somebod
    • 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 [wikipedia.org]) with a known great-great-grandfather of Ligurian origins, one fourth Emilian, one eighth Sloveni

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      -- # This prints: Just another Perl hacker, seek DATA,15,0 and print q... ; __END__
  • You are far braver than I would be in this situation, in both dealing with it and publicly talking about it.

    I salute you. Here's hoping that things go as planned and you're with us for a long long time.
    • 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.

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      -- # This prints: Just another Perl hacker, seek DATA,15,0 and print q... ; __END__
      • 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.
        • 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 [wikipedia.org]) 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 c

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          -- # This prints: Just another Perl hacker, seek DATA,15,0 and print q... ; __END__